Someone told me the other day that I hadn't blogged in a while which was true. While I've had plenty to write about, that seemed to be the problem...there was too much going on. I've had some time now and things are settling back down (believe it or not) and I can gather some thoughts together. It's been a roller coaster of emotions, fear, patience, waiting and so many other things for 5 weeks straight. For 5 weeks I went with a lump in my breast that I was told could have been as simple as a cyst but possibly cancer and it was not known what it was. My mammogram showed a second spot as well and it was determined that the first spot would be removed because it was "questionable" and the second spot would be "watched". For 5 weeks I had to talk to my husband about the possibility of what was happening when either of us could talk about it, what we were going to tell our children, what we were going to tell our oldest about the surgery, etc.
The day of the surgery came and I'm still holding out Faith that she will remove it and tell us that everything is simply fine. She comes out and tells my husband that ....I've never seen anything like that before and I don't know what it is, I'll send it for pathology. So it's at this point that we begin to wonder if something could be wrong, maybe it wasn't a simple cyst after all. For 5 days we worried, I cried, I didn't sleep and I waited and waited and waited. Finally getting a phone call that in fact it was not cancer but Necrosis which can mimic a malignant tumor. Nothing else needed to be done except to heal from where she did the surgery and watch the other spot.
Those were almost the scariest 5 days of my entire life, next to nearly losing my twins. I can't explain the feeling of someone telling you they don't know. The worst part about that was that while my husband and I were trying to deal with this and I am healing we had a couple of visitors, one friend brought dinner but none of our friends called us. We heard from our family, my preacher went to the hospital and so did a good friend. It really made the two of us wonder.....
Maybe it's me, or my husband or our children. Maybe we don't do enough for other people or our friends, maybe we have expected too much, not given enough of our time. I'm not sure the reason.
I have to end this by saying that I am thankful to the people we did hear from and to our scouting families who spoke to Mike. It was so thoughtful even for those who didn't know us well to ask him how we were doing. We appreciated that more than they know. To quote two things I read on Facebook today: "Friendship is showing love" and "be thankful for what we have" That sums up a lot in a small amount of words.
Tuesday, November 30, 2010
Wednesday, October 20, 2010
AHHHHH
That's the sound of me screaming! I'm sure many of you can share in my frustration and anxiety. Let me start by saying that for me (I can only speak for myself) writing, blogging, journaling, any of these is a great release for myself. Some people choose to keep a journal and write all of their thoughts down in it. Others write books and I choose to write here, on my computer and let other people read it because it doesn't bother me and I truly do hope that it helps someone else. Perhaps we have something in common, going through something similar or I can help you and you can help me.... or I can just make you laugh at some of the things that go on in my life. My kids are funny, funny things happen, etc.
So with all of that out of the way, my mammogram report is still not back. So will you join me with the screaming because I would seriously go in the front yard right about now and just sit down in the grass and scream!! WHAT??!!!! Ok so several things come to mind... did they lose it? Are they lazy? Is it bad?? What the heck people...... My appointment with the surgeon is next Thursday. You know the saying, hurry up and wait. Yes that's me, dying for next Thursday to just get here. I think I may go stir crazy. Days like today when the house is empty, I'm needing to do some cleaning (blah) and I hear "toot and puddle" on the TV. You can laugh, I should be!
I find myself at odd times when I feel like I just may not be able to breathe. I find myself sitting down and not knowing how I should feel about all of this. I don't really have a feeling, good or bad, just scared. I find myself crying at times. Contrary to popular belief.... I'm going by myself next week too.... Yes yes I know. But I want to go alone. Don't throw anything, I can't run that fast! I do though, my son needs to go to OT and so my husband is taking him (that's important) and then someone needs to stay with his sister and that's my mom and so I'm taking myself. I'm fine, everything will be fine and the Dr will be there. If I need someone that day, I'll call someone. Sometimes it's better to not have your family see you be a complete basket case all of the time.
Ok so moving completely away from this topic, but this is just something I have to get off of my chest because like I said this is my place to be.... me. Last night we said Goodbye to a wonderful person. It was hard she fought with dignity and spirit and she will be missed. As most people know I don't see my biological father or that side of the family..... I really have no idea what I did. Well my sister was at the funeral home last night. She saw me, looked right at me several times and each time turned her head. She never spoke, never raised her hand to wave. I just would love to know what I could have done to make them hate me so much, that even there at that moment she wouldn't even speak.
I just have to say with everything going on, the things with Thomas, the medical stuff with me (all the years), losing friends to cancer, car accidents, etc, losing family members too, it's just nice to know where I am at this exact moment. I'm walking with God every step of the way, growing more and more as a Christian and learning more than I ever thought possible. I'm involved in things that I never thought I could do or maybe would want to do, but am having the best time every single week. My kids are happy and for the most part healthy. My husband and I are good and it's been 11 years which is amazing to me as to where that time went. I have a wonderful mother and dad who live very close by and help out so much when I need them to. I have great friends that I can count on. Even with bumps in the road, sad times and hurtful things, life is good and there is so much to be thankful for.....even when I want to scream!
So with all of that out of the way, my mammogram report is still not back. So will you join me with the screaming because I would seriously go in the front yard right about now and just sit down in the grass and scream!! WHAT??!!!! Ok so several things come to mind... did they lose it? Are they lazy? Is it bad?? What the heck people...... My appointment with the surgeon is next Thursday. You know the saying, hurry up and wait. Yes that's me, dying for next Thursday to just get here. I think I may go stir crazy. Days like today when the house is empty, I'm needing to do some cleaning (blah) and I hear "toot and puddle" on the TV. You can laugh, I should be!
I find myself at odd times when I feel like I just may not be able to breathe. I find myself sitting down and not knowing how I should feel about all of this. I don't really have a feeling, good or bad, just scared. I find myself crying at times. Contrary to popular belief.... I'm going by myself next week too.... Yes yes I know. But I want to go alone. Don't throw anything, I can't run that fast! I do though, my son needs to go to OT and so my husband is taking him (that's important) and then someone needs to stay with his sister and that's my mom and so I'm taking myself. I'm fine, everything will be fine and the Dr will be there. If I need someone that day, I'll call someone. Sometimes it's better to not have your family see you be a complete basket case all of the time.
Ok so moving completely away from this topic, but this is just something I have to get off of my chest because like I said this is my place to be.... me. Last night we said Goodbye to a wonderful person. It was hard she fought with dignity and spirit and she will be missed. As most people know I don't see my biological father or that side of the family..... I really have no idea what I did. Well my sister was at the funeral home last night. She saw me, looked right at me several times and each time turned her head. She never spoke, never raised her hand to wave. I just would love to know what I could have done to make them hate me so much, that even there at that moment she wouldn't even speak.
I just have to say with everything going on, the things with Thomas, the medical stuff with me (all the years), losing friends to cancer, car accidents, etc, losing family members too, it's just nice to know where I am at this exact moment. I'm walking with God every step of the way, growing more and more as a Christian and learning more than I ever thought possible. I'm involved in things that I never thought I could do or maybe would want to do, but am having the best time every single week. My kids are happy and for the most part healthy. My husband and I are good and it's been 11 years which is amazing to me as to where that time went. I have a wonderful mother and dad who live very close by and help out so much when I need them to. I have great friends that I can count on. Even with bumps in the road, sad times and hurtful things, life is good and there is so much to be thankful for.....even when I want to scream!
Monday, October 18, 2010
Where to start?
I'm not sure if I know where to begin because I'm so full of so many emotions, but I feel the need to write because it's often the best thing for me. Right now I feel sad, scared, angry, terrified, numb, frustrated. Just so many things and often I don't even know which one I am at the present moment. This whole thing started last week and originally I had decided that I would just not tell anyone except for a couple of people that I had to tell. However, I'm not good at hiding my emotions (not a bad thing) and I feel very strongly about this because I think what I happen to be going through is extremely important. Just like with Thomas and his Autism, sometimes you just have to stand up for what you think is important!
I'll just start at the beginning. Last Wednesday evening while going to bed I happen to do a self breast exam, something I tend to do quite often because there is a history of breast cancer on both sides of my family that I'm aware of. I was quite shocked to actually find a lump in my left breast. I was so shocked that I literally shook my head, rolled over and felt again. I wasn't mistaken and thought I was going to be sick. In all of the years that my GYN has preached to me about checking my own breasts and the fact that I've never felt anything and neither has she, I was floored.
I got up Thursday morning and let my mother know. She thought I should have it checked. I couldn't bring myself to tell my husband. By now, I was completely terrified. I finally told him before he left for work. I drove Thomas to his OT appointment an hour away and drove back home before going to the Dr to have it checked out. The Dr could feel the same thing I had felt, she said that they would have it checked ASAP. She said I needed to have a mammogram and an ultrasound and they would be sending me over to the hospital. By now I'm thinking what the heck is this thing? She assured me that if it was nothing she would let me know, she wouldn't let it linger and if there was anything to be concerned about they would send me to the surgeon. I left in tears. I was scared.
My appointment was the next morning and I had to have the mammogram first at one place and then go over to the hospital for the U/S. My husband went with me. I didn't really talk much, didn't have much to say. The lady doing the mammogram was nice, she tried to make me feel better. She told me my results would be there Monday morning and she hoped everything worked out. The U/S tech just told me to have a good weekend. I was still scared.
My husband and oldest son went camping all weekend and Thomas and his sister hung out with me. I can honestly say it felt like the longest weekend ever. First thing this morning at 8 AM the Dr's office called me. The nurse said they were sending me to the surgeon for a surgical consult. My heart dropped when she said it. She said that all they had back was the U/S, the mammogram wasn't back and that all the report said was "appears to be a cyst". She said she would call at 9AM for the mammogram, she would make my appointment and call me back. I got off the phone and cried again.
The nurse called me back in a couple of hours and asked how I was and when I said Ok she sort of sighed, the mammogram had not been read yet. Of course I'm thinking... why not? She gave me my appointment time for the surgeon, I asked a few questions. She said they were all praying for me (I know all of the staff there) I cried again, I'm really scared.
Some people may say, well this isn't bad news, you'll be fine! You may actually be right, in fact I hope you are right. BUT this isn't happening to you right now. This is me and no one has said to me yet that everything is 100% fine, so until then I'm absolutely terrified. I think I have every right to be. My 30th birthday is tomorrow and I certainly didn't see this coming, this , I keep saying this like there is some word I just can't bring myself to say. I didn't expect for my 30th birthday that I might be sitting here wondering if someone may say to me that I might have cancer, there I said it. It's terrifying, absolutely and utterly terrifying.
I'll just start at the beginning. Last Wednesday evening while going to bed I happen to do a self breast exam, something I tend to do quite often because there is a history of breast cancer on both sides of my family that I'm aware of. I was quite shocked to actually find a lump in my left breast. I was so shocked that I literally shook my head, rolled over and felt again. I wasn't mistaken and thought I was going to be sick. In all of the years that my GYN has preached to me about checking my own breasts and the fact that I've never felt anything and neither has she, I was floored.
I got up Thursday morning and let my mother know. She thought I should have it checked. I couldn't bring myself to tell my husband. By now, I was completely terrified. I finally told him before he left for work. I drove Thomas to his OT appointment an hour away and drove back home before going to the Dr to have it checked out. The Dr could feel the same thing I had felt, she said that they would have it checked ASAP. She said I needed to have a mammogram and an ultrasound and they would be sending me over to the hospital. By now I'm thinking what the heck is this thing? She assured me that if it was nothing she would let me know, she wouldn't let it linger and if there was anything to be concerned about they would send me to the surgeon. I left in tears. I was scared.
My appointment was the next morning and I had to have the mammogram first at one place and then go over to the hospital for the U/S. My husband went with me. I didn't really talk much, didn't have much to say. The lady doing the mammogram was nice, she tried to make me feel better. She told me my results would be there Monday morning and she hoped everything worked out. The U/S tech just told me to have a good weekend. I was still scared.
My husband and oldest son went camping all weekend and Thomas and his sister hung out with me. I can honestly say it felt like the longest weekend ever. First thing this morning at 8 AM the Dr's office called me. The nurse said they were sending me to the surgeon for a surgical consult. My heart dropped when she said it. She said that all they had back was the U/S, the mammogram wasn't back and that all the report said was "appears to be a cyst". She said she would call at 9AM for the mammogram, she would make my appointment and call me back. I got off the phone and cried again.
The nurse called me back in a couple of hours and asked how I was and when I said Ok she sort of sighed, the mammogram had not been read yet. Of course I'm thinking... why not? She gave me my appointment time for the surgeon, I asked a few questions. She said they were all praying for me (I know all of the staff there) I cried again, I'm really scared.
Some people may say, well this isn't bad news, you'll be fine! You may actually be right, in fact I hope you are right. BUT this isn't happening to you right now. This is me and no one has said to me yet that everything is 100% fine, so until then I'm absolutely terrified. I think I have every right to be. My 30th birthday is tomorrow and I certainly didn't see this coming, this , I keep saying this like there is some word I just can't bring myself to say. I didn't expect for my 30th birthday that I might be sitting here wondering if someone may say to me that I might have cancer, there I said it. It's terrifying, absolutely and utterly terrifying.
Monday, October 11, 2010
It Matters
Some things just matter and no matter how hard we try to forget or we try to erase the hurt, pain or the memory, it matters. It may not matter to anyone else, but it matters to us. We are all entitled to our feelings, opinions and so forth. Again, I say that it may not matter to anyone else, but it could matter to you!
On Saturday we had a wonderful turn out for the Run/Walk for Autism. 24 wonderful, dedicated people left their homes and came to join us in honor of Thomas. It was very emotional and very wonderful to see these kind hearted people show up and support him, support us and love him! It mattered to them to be there and they proved that. We had children walking with us, even a few that walked the whole way. Thomas' older brother ran the entire 5K! I was so proud of him. On the flip side of that, there were a few people who had said over and over how much this meant to them and how much Thomas means to them but they didn't show up. They really proved to us that perhaps this doesn't mean as much to them as they had proclaimed some months earlier and that Thomas and Autism doesn't mean that much to them after all. What a saddening feeling I had that day to really feel that for him. What an eye opener as well, it has nothing to do with me, but this little boy who cannot speak for himself and whether or not he will or may ever know if you were there.... it has nothing to do with that. Someone said that they would show up, said they would be there and that this was "their thing, their platform, they were excited..." then nothing on the day of the actual walk. I'm sad for Thomas because he will have to encounter people in his life who may build up his hopes and then tear them down and it's my job to teach him to be able to deal with that.... you would think that people who claim to love him wouldn't do that to him at 4 years old. I'm very saddened and very hurt for him. It matters.
We raised over $5,000 by the end of Saturday for Team Thomas and while we were not the team with the most money raised, we did very well. We had lots of people to give money that day, we had some late comers to sign up and walk with us and somehow some of the workers from the Autism Society had heard about Team Thomas.... so it matters. That matters a lot. That money will be used for so many good things. It will be used to help someone who needs therapy, whose insurance won't pay, and so many other things for children and adults with Autism. To learn more you can visit the Autism Society of NC's website and read more.
So many things are happening in our little corner of the world. It seems that good friends are hard to find, things are always happening, something always needs to be done, kids are going here and there, someone always has something to say. In reality the only thing that matters is making it through the day in one piece and worrying about what God has to say. His opinion matters and no one else's. I've been thinking about writing some of this into a book, have no idea where to start, or end. Is this the life I would have chosen for us? Probably not. Would I trade this life with anyone else? Not for anything else in this world! Each day matters to me in some form or another and when I hear someone say "I'm glad it's you and not me", I'm glad it's me too!
On Saturday we had a wonderful turn out for the Run/Walk for Autism. 24 wonderful, dedicated people left their homes and came to join us in honor of Thomas. It was very emotional and very wonderful to see these kind hearted people show up and support him, support us and love him! It mattered to them to be there and they proved that. We had children walking with us, even a few that walked the whole way. Thomas' older brother ran the entire 5K! I was so proud of him. On the flip side of that, there were a few people who had said over and over how much this meant to them and how much Thomas means to them but they didn't show up. They really proved to us that perhaps this doesn't mean as much to them as they had proclaimed some months earlier and that Thomas and Autism doesn't mean that much to them after all. What a saddening feeling I had that day to really feel that for him. What an eye opener as well, it has nothing to do with me, but this little boy who cannot speak for himself and whether or not he will or may ever know if you were there.... it has nothing to do with that. Someone said that they would show up, said they would be there and that this was "their thing, their platform, they were excited..." then nothing on the day of the actual walk. I'm sad for Thomas because he will have to encounter people in his life who may build up his hopes and then tear them down and it's my job to teach him to be able to deal with that.... you would think that people who claim to love him wouldn't do that to him at 4 years old. I'm very saddened and very hurt for him. It matters.
We raised over $5,000 by the end of Saturday for Team Thomas and while we were not the team with the most money raised, we did very well. We had lots of people to give money that day, we had some late comers to sign up and walk with us and somehow some of the workers from the Autism Society had heard about Team Thomas.... so it matters. That matters a lot. That money will be used for so many good things. It will be used to help someone who needs therapy, whose insurance won't pay, and so many other things for children and adults with Autism. To learn more you can visit the Autism Society of NC's website and read more.
So many things are happening in our little corner of the world. It seems that good friends are hard to find, things are always happening, something always needs to be done, kids are going here and there, someone always has something to say. In reality the only thing that matters is making it through the day in one piece and worrying about what God has to say. His opinion matters and no one else's. I've been thinking about writing some of this into a book, have no idea where to start, or end. Is this the life I would have chosen for us? Probably not. Would I trade this life with anyone else? Not for anything else in this world! Each day matters to me in some form or another and when I hear someone say "I'm glad it's you and not me", I'm glad it's me too!
Tuesday, October 5, 2010
Helping Hands...
It's been 6 months since Thomas was diagnosed with Autism Spectrum Disorder, Aspergers Syndrome. So many times I've wanted to say how I feel, what I feel, but there is no one to tell.... Tonight is our first Autism Support Group. I feel like this is a very important thing because the families of children and adults with Autism need someone to talk to.
When all of this first started we had a lot of support, a lot of friends that were willing to do anything they could to lend a helping hand. Now, it's not that our friends have disappeared so much as that we don't hear from them as much. We don't get phone calls checking on Thomas or us, we don't really get asked how things are going. I can hold my head up, but that only works for so long before I nearly drown... Sometimes we just need a helping hand.
We did an article in our local newspaper. The point of the article was to help people better understand Autism and what our life is like living with Thomas. We don't want pity, we simply wanted some help. When someone sees us in public and he's throwing a fit, not to give us the look. You know, the look like "Oh no, that poor child must not have gotten his way when he wanted something...." no that's not it at all. As much as I would like to think I could do this by myself, I can't. I also never heard from my other family members after doing that article.... funny how some people we are around just can't get with it.
I have a great mom who helps a lot. If it wasn't for her being so close by I wouldn't be able to do anything. Thomas would be forced to do many things that he either didn't want to do or simply can't do. Often he just doesn't "feel" like going with me to get my oldest son from school. His twin sister will ride with me and one of conversations in the car a few weeks ago went like this: Me "You and Thomas will be here next year" Her: "I know!" Me: "Do you think Thomas will be ok?" Her: "Yes I think so" Me: "You take care of Thomas don't you?" Her: "Yes" Me: "Do you think one day you will stop taking care of Thomas?" Her: "Maybe......one day"
She is my little set of helping hands quite often at 4 1/2 years old. She helps me more than anyone else ever does and she really shouldn't have to. It's very difficult here sometimes and often some days I'm not sure how I will make it to then end of the day. It's hard for a 9 year old and a 4 year old to understand what is going on. If they had a set of helping hands as well then they might could make it through a little easier too.
When all of this first started we had a lot of support, a lot of friends that were willing to do anything they could to lend a helping hand. Now, it's not that our friends have disappeared so much as that we don't hear from them as much. We don't get phone calls checking on Thomas or us, we don't really get asked how things are going. I can hold my head up, but that only works for so long before I nearly drown... Sometimes we just need a helping hand.
We did an article in our local newspaper. The point of the article was to help people better understand Autism and what our life is like living with Thomas. We don't want pity, we simply wanted some help. When someone sees us in public and he's throwing a fit, not to give us the look. You know, the look like "Oh no, that poor child must not have gotten his way when he wanted something...." no that's not it at all. As much as I would like to think I could do this by myself, I can't. I also never heard from my other family members after doing that article.... funny how some people we are around just can't get with it.
I have a great mom who helps a lot. If it wasn't for her being so close by I wouldn't be able to do anything. Thomas would be forced to do many things that he either didn't want to do or simply can't do. Often he just doesn't "feel" like going with me to get my oldest son from school. His twin sister will ride with me and one of conversations in the car a few weeks ago went like this: Me "You and Thomas will be here next year" Her: "I know!" Me: "Do you think Thomas will be ok?" Her: "Yes I think so" Me: "You take care of Thomas don't you?" Her: "Yes" Me: "Do you think one day you will stop taking care of Thomas?" Her: "Maybe......one day"
She is my little set of helping hands quite often at 4 1/2 years old. She helps me more than anyone else ever does and she really shouldn't have to. It's very difficult here sometimes and often some days I'm not sure how I will make it to then end of the day. It's hard for a 9 year old and a 4 year old to understand what is going on. If they had a set of helping hands as well then they might could make it through a little easier too.
Monday, October 4, 2010
Timing is Everything!
I haven't written anything in a while, not that I haven't had anything to say but the simple fact of the matter is..... I live with an Autistic 4 year old. Getting to sit down and write about what is going on in our world is not a top priority. Timing is everything.... I have to find time to answer the phone, time to take a shower, time to sit down and eat, time to do the laundry, time to go to the bath.... well you get the idea. Thomas takes up a lot of my time. So do a lot of other things I am involved in so that my other two children don't feel left out. Often I'm asked the same question "I don't know how you do it all?" Well if I stopped I'm not sure I'd know what to do then either.
Monday's are scout nights, my oldest son is moving his way right on up to Boy Scouts and he thoroughly enjoys it. I go because I'm a part of the scouts in one form or another doing things for them and helping out, getting advancements, doing fundraisers, etc. Eventually they won't need me anymore and then it will be time for Thomas to try scouts and I'll be prepared to go through it with him as a parent. Again... timing is everything. On Monday evenings Thomas and his twin sister go to dance for an hour and a half and this is a very good thing for both of them. Their teacher is very familiar with them both and this is truly a good thing. I'm looking forward to the recital early next year and to watch the two of them on stage! Yes you know... it's all about the timing.
Tuesdays now are a slower day and I've decided that I would like to start a support group for families who have Autistic children or family members. I'm thinking that once a month is a good amount for us to meet. So for one hour I will get together with a group of individuals dealing with the same challenges that I am and we can help one another to face those challenges head on and deal with them the best way we can as well as passing on information for other local support. There is that timing again, funny how it shows up when it's needed.
Wednesday evenings I work part time with my mother and this is a little "free time" sort of because I'm away, I envy my husband because he gets to work all day and be with other adults while I'm home. I love my children, don't get me wrong, but I do wish some days that I could be out and I do wish I could work a little more. We do group therapy for substance abusers and it's great and often very inspiring. Timing.....
Thursday I take Thomas to OT in Raleigh for sensory therapy. This is great for him and he often needs this by Thursday. He does very well and usually doesn't even need me to be in the room with him. We are very fortunate to have been told about this therapist and this place. They work well with Autistic children and seem to know how to help him with many areas he still struggles in..... she is right on time when we need her.
Friday is another sort of free day for us. Thomas and his sister are in preschool M, W, F and this has been very good for them. They have excellent teachers who are very understanding. They are wiling to work with him and be there for whatever he may need. I was very lucky to find this preschool and to know both of these teachers, man that timing again is everything......
Speaking of timing, maybe it's not always just the timing or being in the right place at the right time but maybe it's the hand of GOD putting us where we truly need to be when we need to be there. Things here aren't easy, we struggle every single day to make it through and often it's hour by hour. I don't have many friends that just check in and I'm by myself the whole day, but just knowing that there are little things that can get him through to the next day and that there are other people who truly understand makes it easier and all worthwhile because my life wouldn't be the same if it wasn't this way
Monday's are scout nights, my oldest son is moving his way right on up to Boy Scouts and he thoroughly enjoys it. I go because I'm a part of the scouts in one form or another doing things for them and helping out, getting advancements, doing fundraisers, etc. Eventually they won't need me anymore and then it will be time for Thomas to try scouts and I'll be prepared to go through it with him as a parent. Again... timing is everything. On Monday evenings Thomas and his twin sister go to dance for an hour and a half and this is a very good thing for both of them. Their teacher is very familiar with them both and this is truly a good thing. I'm looking forward to the recital early next year and to watch the two of them on stage! Yes you know... it's all about the timing.
Tuesdays now are a slower day and I've decided that I would like to start a support group for families who have Autistic children or family members. I'm thinking that once a month is a good amount for us to meet. So for one hour I will get together with a group of individuals dealing with the same challenges that I am and we can help one another to face those challenges head on and deal with them the best way we can as well as passing on information for other local support. There is that timing again, funny how it shows up when it's needed.
Wednesday evenings I work part time with my mother and this is a little "free time" sort of because I'm away, I envy my husband because he gets to work all day and be with other adults while I'm home. I love my children, don't get me wrong, but I do wish some days that I could be out and I do wish I could work a little more. We do group therapy for substance abusers and it's great and often very inspiring. Timing.....
Thursday I take Thomas to OT in Raleigh for sensory therapy. This is great for him and he often needs this by Thursday. He does very well and usually doesn't even need me to be in the room with him. We are very fortunate to have been told about this therapist and this place. They work well with Autistic children and seem to know how to help him with many areas he still struggles in..... she is right on time when we need her.
Friday is another sort of free day for us. Thomas and his sister are in preschool M, W, F and this has been very good for them. They have excellent teachers who are very understanding. They are wiling to work with him and be there for whatever he may need. I was very lucky to find this preschool and to know both of these teachers, man that timing again is everything......
Speaking of timing, maybe it's not always just the timing or being in the right place at the right time but maybe it's the hand of GOD putting us where we truly need to be when we need to be there. Things here aren't easy, we struggle every single day to make it through and often it's hour by hour. I don't have many friends that just check in and I'm by myself the whole day, but just knowing that there are little things that can get him through to the next day and that there are other people who truly understand makes it easier and all worthwhile because my life wouldn't be the same if it wasn't this way
Monday, August 9, 2010
Rough Road Ahead
This week is going to be a rough week in this house. On Wednesday I will have my 4th knee surgery. It's the 3rd one on my right knee. I tore the cartilage in it. I have no idea how I did that. Not to mention that last week I slipped and fell on the stairs coming in the house and might have messed it up even more, but that's ok they are fixing it! I don't have a time yet, just the day.
Thomas will not understand what is going on. This will rock his little world. Sure I've had surgery, actually more than one since they've been born but not since we've known about the Autism. Not that that makes a difference but things now are more rigid, the schedule is more set and he has a routine every single day that really does not vary or change by much. On Wednesday I'm probably going to mess that up for several weeks. The house is going to turn upside down and then on top of that everyone is going to start back to school.
All of them are going to different schools and starting at different times. Thomas doesn't realize that he will not be with Sissy next year nor do I think that she really has grasped the concept that he will not be with her. My oldest will be a 4th grader and everyone goes and different times during the day. Not to mention that into the mix of that we are going to throw mom who just had knee surgery and needs to go to orientation, IEP meetings, get Thomas to OT, drop off and pick up, etc. Our typical day on a Monday after everyone has started will go like this: My oldest will have to be at his school by 8 so we will leave the house around 7:45 ish. Thomas then needs to go across town to his school and be in by 8:30 and finally Sissy needs to go a short distance from there and be in her preschool by 9. Mom can then come home and clean, relax, run errands, whatever until the pickup process begins which will be : Sissy is picked up at 1 and can come home because we don't pick Thomas up until around 2 and then we need to book it across town to get brother by 2:30-3. This will be the biggest issue because I can guarantee that Thomas will be hungry and thirsty so I will always need to be prepared with a snack and drink (Yoohoo) so that we can go get in line for brother because the line there gets long, quick and you don't want to wait in the very back of the line especially with Thomas who is ready to get him and GO!
I'm just praying that this week goes well for me, for them, for everyone! I hope and pray that everything with each of them and their schools goes well. I'm very worried for Thomas and Sissy being separated. I know it is going to be difficult for me, I will be very emotional. Due to my surgery I have had to cancel some appointments for him that we really needed to get to and I just could not get there. So if you are a praying person, send one up for Thomas because sometimes change is the hardest thing to accept.
Thomas will not understand what is going on. This will rock his little world. Sure I've had surgery, actually more than one since they've been born but not since we've known about the Autism. Not that that makes a difference but things now are more rigid, the schedule is more set and he has a routine every single day that really does not vary or change by much. On Wednesday I'm probably going to mess that up for several weeks. The house is going to turn upside down and then on top of that everyone is going to start back to school.
All of them are going to different schools and starting at different times. Thomas doesn't realize that he will not be with Sissy next year nor do I think that she really has grasped the concept that he will not be with her. My oldest will be a 4th grader and everyone goes and different times during the day. Not to mention that into the mix of that we are going to throw mom who just had knee surgery and needs to go to orientation, IEP meetings, get Thomas to OT, drop off and pick up, etc. Our typical day on a Monday after everyone has started will go like this: My oldest will have to be at his school by 8 so we will leave the house around 7:45 ish. Thomas then needs to go across town to his school and be in by 8:30 and finally Sissy needs to go a short distance from there and be in her preschool by 9. Mom can then come home and clean, relax, run errands, whatever until the pickup process begins which will be : Sissy is picked up at 1 and can come home because we don't pick Thomas up until around 2 and then we need to book it across town to get brother by 2:30-3. This will be the biggest issue because I can guarantee that Thomas will be hungry and thirsty so I will always need to be prepared with a snack and drink (Yoohoo) so that we can go get in line for brother because the line there gets long, quick and you don't want to wait in the very back of the line especially with Thomas who is ready to get him and GO!
I'm just praying that this week goes well for me, for them, for everyone! I hope and pray that everything with each of them and their schools goes well. I'm very worried for Thomas and Sissy being separated. I know it is going to be difficult for me, I will be very emotional. Due to my surgery I have had to cancel some appointments for him that we really needed to get to and I just could not get there. So if you are a praying person, send one up for Thomas because sometimes change is the hardest thing to accept.
Monday, August 2, 2010
Letting Go
I've learned that you have to do a lot of this. Lately I've had to let go of the thought that I'd ever have my father in my life or that my children would have their biological grandfather. One day I will have to sit down and tell them everything, but that's one day, not today! My oldest son will have questions and I will address those with him when the time is right. For now I'm letting all of that go. It's not good for the soul to hold onto things. God does not want us to be angry beings.
The same holds true for Autism. While dropping my oldest son off this week for camp my grandmother told me a story that someone in our family had told her. They teach in the public school system and just had a boy with Autism to graduate and his counselor had come in when he first started to teach them about Autism and what to expect. The counselor said to imagine that you are going on the best trip of your life (most people would say Hawaii) and you are all geared up and ready to go and the plane lands in Kentucky. You think to yourself this is terrible, this isn't what I wanted or expected at all. This is not what I had planned for. Then you realize that Kentucky isn't so bad after all and you adjust and make the best out of it. That's Autism!
When Thomas was born he wasn't supposed to make it. He was grey and little and his chest was caved in. He had tubes everywhere and he couldn't breathe. In the NICU he had blood drawn multiple times a day and he went back and forth between a CPAP and being intubated. He had a spinal tap and had staph infection. He was not supposed to make it. BUT HE DID! He came home and was not doing things on time, he had a right sided tremor and had to go to a neurologist. He had to have a bronchoscopy at 11 months old and was diagnosed with not 1, BUT 2 respiratory conditions. He went another year and was diagnosed again with Asthma. He went yet another year or so and BOOM Asperger's Syndrome - Autism Spectrum.
I've been through all the anger emotions. I've had to let go of a lot. I can't be angry anymore because he needs me! There are things much bigger than I am, more powerful than I. Sometimes we just have to learn to let it go!
The same holds true for Autism. While dropping my oldest son off this week for camp my grandmother told me a story that someone in our family had told her. They teach in the public school system and just had a boy with Autism to graduate and his counselor had come in when he first started to teach them about Autism and what to expect. The counselor said to imagine that you are going on the best trip of your life (most people would say Hawaii) and you are all geared up and ready to go and the plane lands in Kentucky. You think to yourself this is terrible, this isn't what I wanted or expected at all. This is not what I had planned for. Then you realize that Kentucky isn't so bad after all and you adjust and make the best out of it. That's Autism!
When Thomas was born he wasn't supposed to make it. He was grey and little and his chest was caved in. He had tubes everywhere and he couldn't breathe. In the NICU he had blood drawn multiple times a day and he went back and forth between a CPAP and being intubated. He had a spinal tap and had staph infection. He was not supposed to make it. BUT HE DID! He came home and was not doing things on time, he had a right sided tremor and had to go to a neurologist. He had to have a bronchoscopy at 11 months old and was diagnosed with not 1, BUT 2 respiratory conditions. He went another year and was diagnosed again with Asthma. He went yet another year or so and BOOM Asperger's Syndrome - Autism Spectrum.
I've been through all the anger emotions. I've had to let go of a lot. I can't be angry anymore because he needs me! There are things much bigger than I am, more powerful than I. Sometimes we just have to learn to let it go!
Friday, July 30, 2010
A Story for Thomas
I was asked to write a story for a magazine to be published in August for the September/October issue. It's about Thomas and what our upcoming fundraiser is and what our efforts have been. I haven't sent this to them yet, but I did send it to my family. After my previous blog I have a feeling that some "other" people read that so if they are reading this.... READ this story, truly understand what is going on here. This is lifelong, every day, every second and it affects not just Thomas but all of us. Here is Thomas' Story
On March 30, 2010 Thomas Summers was diagnosed with Aspergers Syndrome, a form of Autism. For his family this meant that life would forever change. Thomas is a loving, sweet 4 year old little boy with a twin sister and a 9 year old brother. His mother decided that there should be more awareness for Autism and decided to raise money for the Autism Society of North Carolina by doing fundraisers. Right now 1 out of 110 children are diagnosed with Autism and it is four times more common in boys than girls. With the help of her friends and family they formed “Team Thomas” to walk in the upcoming Run/Walk for Autism in Raleigh on October 9 in Moore’s Square. The team got together and started going to local businesses and asking for donations for t-shirts and seeing who would allow them to do fundraisers. They were pleasantly surprised by the amount of support that was shown not only to the cause but also to the Summers family. “Team Thomas” has had a Partylite fundraiser, Chick-fil-a Spirit Night, an ongoing 31 Gifts fundraiser and they will be at three of the First Fridays on the Lawn. All of these combined were great but they all had one big one in mind. Heather Summers, Thomas’ mother, contacted Steve Raper owner of the Doghouse Grill and asked him if he would be interested in helping out. Steve ran with the idea and an enormous event was created. On September 11 from Noon-Midnight “Team Thomas” and the Doghouse Grill will have an Autism Fundraiser. Starting at Noon we will have games, face painting, the start of our silent auction, music, candy and much more! Stop in and have lunch and see what we have going on. We will have our t-shirts, lots of information to hand out, Autism Awareness bracelets, pins and magnets. The team is all there to answer questions, play and have a good time. The Easy Street Band will be there to play around 8pm until Midnight and “Team Thomas” will still be going strong. There will also be a bake sale and we would love to have the community involved. Stop by the table and sign up for the walk while you are there.
Finally, Mike and Heather would like to thank our friends and family for their love and support. We want to thank the businesses who have donated their time, effort or money to us or the Autism Society. We deeply appreciate all of the prayers and concerns from our community!
*”Autism Spectrum Disorder (ASD) refers to a group of developmental disabilities—including classic autism, pervasive developmental disorder-not otherwise specified (PDD-NOS), and Asperger’s Syndrome—that affect a person’s ability to understand what they see, hear, and otherwise sense. It is a brain disorder that impacts communication, social interaction, and behavior. Individuals with ASD typically have difficulty understanding verbal and nonverbal communication and learning appropriate ways of relating to other people, objects, and events. No two people with ASD are the same. As its name implies, ASD is a spectrum disorder that affects individuals differently and with varying degrees of severity. Additionally, ASD is often found in combination with other disabilities.” (Autism Society of North Carolina)
On March 30, 2010 Thomas Summers was diagnosed with Aspergers Syndrome, a form of Autism. For his family this meant that life would forever change. Thomas is a loving, sweet 4 year old little boy with a twin sister and a 9 year old brother. His mother decided that there should be more awareness for Autism and decided to raise money for the Autism Society of North Carolina by doing fundraisers. Right now 1 out of 110 children are diagnosed with Autism and it is four times more common in boys than girls. With the help of her friends and family they formed “Team Thomas” to walk in the upcoming Run/Walk for Autism in Raleigh on October 9 in Moore’s Square. The team got together and started going to local businesses and asking for donations for t-shirts and seeing who would allow them to do fundraisers. They were pleasantly surprised by the amount of support that was shown not only to the cause but also to the Summers family. “Team Thomas” has had a Partylite fundraiser, Chick-fil-a Spirit Night, an ongoing 31 Gifts fundraiser and they will be at three of the First Fridays on the Lawn. All of these combined were great but they all had one big one in mind. Heather Summers, Thomas’ mother, contacted Steve Raper owner of the Doghouse Grill and asked him if he would be interested in helping out. Steve ran with the idea and an enormous event was created. On September 11 from Noon-Midnight “Team Thomas” and the Doghouse Grill will have an Autism Fundraiser. Starting at Noon we will have games, face painting, the start of our silent auction, music, candy and much more! Stop in and have lunch and see what we have going on. We will have our t-shirts, lots of information to hand out, Autism Awareness bracelets, pins and magnets. The team is all there to answer questions, play and have a good time. The Easy Street Band will be there to play around 8pm until Midnight and “Team Thomas” will still be going strong. There will also be a bake sale and we would love to have the community involved. Stop by the table and sign up for the walk while you are there.
Finally, Mike and Heather would like to thank our friends and family for their love and support. We want to thank the businesses who have donated their time, effort or money to us or the Autism Society. We deeply appreciate all of the prayers and concerns from our community!
*”Autism Spectrum Disorder (ASD) refers to a group of developmental disabilities—including classic autism, pervasive developmental disorder-not otherwise specified (PDD-NOS), and Asperger’s Syndrome—that affect a person’s ability to understand what they see, hear, and otherwise sense. It is a brain disorder that impacts communication, social interaction, and behavior. Individuals with ASD typically have difficulty understanding verbal and nonverbal communication and learning appropriate ways of relating to other people, objects, and events. No two people with ASD are the same. As its name implies, ASD is a spectrum disorder that affects individuals differently and with varying degrees of severity. Additionally, ASD is often found in combination with other disabilities.” (Autism Society of North Carolina)
Tuesday, July 20, 2010
Faith
Hebrews 11:1 says Now faith is being sure of what we hope for and certain of what we do not see.
Yesterday I took Thomas for his appointment with the social worker and we discussed the fact that it seemed that aspects of his Autism may be getting worse or regressing. I knew that there were things I wasn't able to control anymore. There were parts of this that I wasn't able to help him with and I'm having a very difficult time communicating with him. He seems to have numerous meltdowns during the day that even I can't control. It becomes a very daunting and frustrating task even for me, the one person who is with him all the time. I get advice thrown at me left and right, but the reality is that he is my son and I know what is best for him. It's not herbal remedies or punishment or spanking or grounding or any of that. He needs what is best for him, he is Thomas. He is not the Autistic child next to him or a mold of someone else. He is himself. This is what I want someone to understand and believe. He is ever changing and this is what is so extremely difficult. Like the verse above.... it's not what I had hoped for, but it's what I got and I'm certain that I have faith even when I can't see it.
The outcome of the his appointment was this: We are going to start teaching him some simple sign language again. Luckily I have a friend who is a sign language interpreter and she agreed to come and work with him. Hopefully when he cannot verbally communicate then he can sign some simple wording to get out what he needs to. I also have bought him a weekly chart so that he knows what his schedule is day by day. Routine is very important for him. He has also gotten very stuck on his brother, so we will incorporate time during the day that he can play with him while not overwhelming his brother. I'm also going to get him flash cards that have feelings, moods, etc on them and attach them to a key chain so he can wear them and be able to express himself that way hopefully without screaming or hitting or throwing something. We are also supposed to check into a case manager and /or CAP worker for some help and guidance. Finally I'm supposed to finish filling out his paperwork for TEACCH. So if I didn't have anything else to do I now have many things added to my list!
I also found out today that I may (possibly) really hoping it's not, need knee surgery. I'll go next week for an MRI on it to see if there is a tear. If so then it must be repaired. Of course this will put a bump in the road with Thomas and his daily routine and schedule. I have been having so much trouble with walking, sitting on the floor, moving, getting around, etc though that I'm almost hoping they will just fix it because I don't know how long it can go on like that and with him needing so much from me!
Faith: being sure of what we hoped for and certain of what we do not see. Sometimes you just have to have a little faith, hope for the best even when you can't see what's right in front of you!
Yesterday I took Thomas for his appointment with the social worker and we discussed the fact that it seemed that aspects of his Autism may be getting worse or regressing. I knew that there were things I wasn't able to control anymore. There were parts of this that I wasn't able to help him with and I'm having a very difficult time communicating with him. He seems to have numerous meltdowns during the day that even I can't control. It becomes a very daunting and frustrating task even for me, the one person who is with him all the time. I get advice thrown at me left and right, but the reality is that he is my son and I know what is best for him. It's not herbal remedies or punishment or spanking or grounding or any of that. He needs what is best for him, he is Thomas. He is not the Autistic child next to him or a mold of someone else. He is himself. This is what I want someone to understand and believe. He is ever changing and this is what is so extremely difficult. Like the verse above.... it's not what I had hoped for, but it's what I got and I'm certain that I have faith even when I can't see it.
The outcome of the his appointment was this: We are going to start teaching him some simple sign language again. Luckily I have a friend who is a sign language interpreter and she agreed to come and work with him. Hopefully when he cannot verbally communicate then he can sign some simple wording to get out what he needs to. I also have bought him a weekly chart so that he knows what his schedule is day by day. Routine is very important for him. He has also gotten very stuck on his brother, so we will incorporate time during the day that he can play with him while not overwhelming his brother. I'm also going to get him flash cards that have feelings, moods, etc on them and attach them to a key chain so he can wear them and be able to express himself that way hopefully without screaming or hitting or throwing something. We are also supposed to check into a case manager and /or CAP worker for some help and guidance. Finally I'm supposed to finish filling out his paperwork for TEACCH. So if I didn't have anything else to do I now have many things added to my list!
I also found out today that I may (possibly) really hoping it's not, need knee surgery. I'll go next week for an MRI on it to see if there is a tear. If so then it must be repaired. Of course this will put a bump in the road with Thomas and his daily routine and schedule. I have been having so much trouble with walking, sitting on the floor, moving, getting around, etc though that I'm almost hoping they will just fix it because I don't know how long it can go on like that and with him needing so much from me!
Faith: being sure of what we hoped for and certain of what we do not see. Sometimes you just have to have a little faith, hope for the best even when you can't see what's right in front of you!
Sunday, July 18, 2010
Lifes Not Always Perfect
It's been a few days, well several days since I've written anything. My mother and I took the twins to the beach. My husband and oldest son stayed here because they both had commitments that they had to keep. I really needed a break, prior to leaving my feelings had been incredibly hurt by several people and I could really feel myself losing control. Not the kind of control where you have to "be in control" but just control in general. The insurance company had gotten me, someone I thought was a friend (maybe not a close friend) had hurt me and my husband. There were probably others in a 2 week time period but that's not here or there.
So a vacation was in order and it was amazing. Thomas did very well considering we were in a new place, new people, new things. He had been to this beach house before but he was out of his normal routine and his things. He got up early every morning and at least two times a day had a severe meltdown. Sometimes it was much more...but I take what I can get so that we can survive. One day down there it rained and not just a sprinkle it down poured. We decided to take them to the aquarium and of course there was about a million other people there who had the same bright idea that we did. I could tell that this made him extremely nervous to be confined inside with such an enormous amount of people. He stayed close to either his sister or one of us. He often got very upset because someone would be in his way or he couldn't get to the glass to see. He never quite understood why people wouldn't move along after a few minutes of looking and give someone else a chance. All in all he did well there until it was time to walk to the car, walking is not his strong suit and it often results in someone carrying him. I typically carry him but can't do this much anymore. I am considering getting a stroller for him to save both of us, physically and mentally.
Since being home things have pretty much gone back to the way that they always are. Thomas is back in his routine. He wakes up about the same time every morning. He wants breakfast not long after waking up, he doesn't want his siblings to bother him, only when he approaches them. He has a need to be in control and he wants to know where we are going and what we are doing so that he can plan this out in his mind. He has to know who is going to be somewhere, if it will be a lot of people, etc. He wants to know if it will be loud or what we will do and what time we will leave. One new question now for him is what time is it? He is infatuated with these questions and you have to answer him. His twin sister is at the age of a little bit of antagonizing him. She can be quite the Diva sometimes.
Life is not always fair or perfect and if you have a child with Autism then every single day is not perfect. It's just that every single day can be a good day or a bad day. That's what they are.... you have good moments and bad moments. You have milestones that you meet and breakthroughs that you accomplish. You have victories and for us these are things that are perfect! This makes life perfect!
So a vacation was in order and it was amazing. Thomas did very well considering we were in a new place, new people, new things. He had been to this beach house before but he was out of his normal routine and his things. He got up early every morning and at least two times a day had a severe meltdown. Sometimes it was much more...but I take what I can get so that we can survive. One day down there it rained and not just a sprinkle it down poured. We decided to take them to the aquarium and of course there was about a million other people there who had the same bright idea that we did. I could tell that this made him extremely nervous to be confined inside with such an enormous amount of people. He stayed close to either his sister or one of us. He often got very upset because someone would be in his way or he couldn't get to the glass to see. He never quite understood why people wouldn't move along after a few minutes of looking and give someone else a chance. All in all he did well there until it was time to walk to the car, walking is not his strong suit and it often results in someone carrying him. I typically carry him but can't do this much anymore. I am considering getting a stroller for him to save both of us, physically and mentally.
Since being home things have pretty much gone back to the way that they always are. Thomas is back in his routine. He wakes up about the same time every morning. He wants breakfast not long after waking up, he doesn't want his siblings to bother him, only when he approaches them. He has a need to be in control and he wants to know where we are going and what we are doing so that he can plan this out in his mind. He has to know who is going to be somewhere, if it will be a lot of people, etc. He wants to know if it will be loud or what we will do and what time we will leave. One new question now for him is what time is it? He is infatuated with these questions and you have to answer him. His twin sister is at the age of a little bit of antagonizing him. She can be quite the Diva sometimes.
Life is not always fair or perfect and if you have a child with Autism then every single day is not perfect. It's just that every single day can be a good day or a bad day. That's what they are.... you have good moments and bad moments. You have milestones that you meet and breakthroughs that you accomplish. You have victories and for us these are things that are perfect! This makes life perfect!
Tuesday, July 6, 2010
Seeing Red
Red tape, anger red, just red! I'm so mad at the insurance company right now I'm still shaking, screaming and crying. On Saturday I opened a 6 page letter from BCBS telling me that they were not going to cover Thomas' Occupational Therapy because they say it is "not medically necessary". Now he had a prescription from the pediatrician for this not to mention the therapist and social worker in Greenville both said he needed it and I have documentation of that in the report for his diagnosis. BUT insurance says, NOPE he doesn't need it.
So let me just tell you why I'm so upset, so angry. This is a child who clearly is developmentally behind. I believe that his Autism is developmental. Some people believe that Autism is behavioral. For Thomas we were beginning (slowly) to do some of the fine motor skills that he lacked or had trouble with. He has trouble feeding himself, but his therapist there had made a spoon and a fork for him. They were also going to order him a special plate. They were getting ready to work on buttoning, snapping, zipping, etc. Yes these may be things that I can do with him, but I also have two other children that need me and Thomas doesn't always listen as well to me as he might to someone else. He was doing well and the progress was small, but still progress. Now, nothing, he gets nothing. Many people have said what about the school system. Yes we are going to get OT through the school, but first you have to have an IEP. We went for that last week and Thomas wouldn't or should I say couldn't understand what they were asking of him when he had to do the hearing exam. So now today we are going for a hearing test at the Dr's office. MORE MONEY! He may not be able to begin speech and OT with the school until September. He will lose a significant amount of time.
We can't pay for this out of pocket, although I don't know how much it is for OT. Also on his report and what was suggested in Greenville was double OT and double speech. So that was what I was going to do. Private and through the school. BCBS has just taken that away from him. So now when he is still lacking certain skills, when it's taking him forever to do something, when he is still so frustrated..... thanks to the insurance company for allowing a child with a diagnosis with a prescription and with a report saying what he needed to go without proper treatment!
Yes I'm seeing red and I'm so angry and upset!
So let me just tell you why I'm so upset, so angry. This is a child who clearly is developmentally behind. I believe that his Autism is developmental. Some people believe that Autism is behavioral. For Thomas we were beginning (slowly) to do some of the fine motor skills that he lacked or had trouble with. He has trouble feeding himself, but his therapist there had made a spoon and a fork for him. They were also going to order him a special plate. They were getting ready to work on buttoning, snapping, zipping, etc. Yes these may be things that I can do with him, but I also have two other children that need me and Thomas doesn't always listen as well to me as he might to someone else. He was doing well and the progress was small, but still progress. Now, nothing, he gets nothing. Many people have said what about the school system. Yes we are going to get OT through the school, but first you have to have an IEP. We went for that last week and Thomas wouldn't or should I say couldn't understand what they were asking of him when he had to do the hearing exam. So now today we are going for a hearing test at the Dr's office. MORE MONEY! He may not be able to begin speech and OT with the school until September. He will lose a significant amount of time.
We can't pay for this out of pocket, although I don't know how much it is for OT. Also on his report and what was suggested in Greenville was double OT and double speech. So that was what I was going to do. Private and through the school. BCBS has just taken that away from him. So now when he is still lacking certain skills, when it's taking him forever to do something, when he is still so frustrated..... thanks to the insurance company for allowing a child with a diagnosis with a prescription and with a report saying what he needed to go without proper treatment!
Yes I'm seeing red and I'm so angry and upset!
Friday, July 2, 2010
Is it good enough?
Have you ever sat and wondered if everything you are doing is good enough? Lately that's all I do.... Especially yesterday which was a horrific day. I do the very best that I can on a daily basis and sometimes that goes hour by hour, minute by minute. This is not to say that other people are not doing the best that they can, I'm just talking about me.
I try very hard to get the kids out when I can. Typically that has meant the pool because we are members so I don't have to pay to get them in, they love it and I don't have to worry quite so much about them. Until recently anyway because Thomas is so wrapped up in his brother. Of course his brother has seen friends there and wants to be with them. Now I don't expect that people are going to sit and talk to me at the pool, even if they are people who know me. I've come to realize now that a lot of people sometimes shun away from us and that's ok. Yesterday we had an incident where a child at the pool took a toy out of Thomas' hand (after Thomas threw one) and threw it in the big pool. Of course to this child one bad turn deserves another, however as this child began to explain to my Autistic son that his horrible behavior deserved for that toy to be thrown in the pool was where my emotion began to run. Thomas cannot understand things like this when you tell him. To him he saw the action of the toy being taken away and my oldest son tried to come between the other child and Thomas to no avail and however was unclear on the right thing to say knowing Thomas was extremely upset and could not comprehend what this older child was saying to him. I of course made my children leave (it was time to go anyway) and was later "scolded" in an email by this parent.
I do get very emotionally involved when it comes to Thomas and most of the time I can't separate myself from that. I am very involved and I am on a mission to give out as much information about Autism and Autism Awareness as I can. I tried very hard to get help for my son when he was 2 and no one would help me. It took me 2 years to get anyone to listen to anything I was saying and to really hear me. I'm not saying we could have fixed anything, no he would still have Autism, but maybe just maybe some of the things he has going on might not be as severe.
To the parents that think I go to far with awareness, try having your child not look you in the eye when they speak to you. Or when you are sitting at the dinner table have them tell you "don't look at me" "stop talking to me" Have your child throw a tantrum for hours on end with no stopping, nothing you can do to console them. Be in a restaurant and they must get up and jump behind their chair, run around the table or just "stim" in some way while the people around you just watch. Be in Walmart, Target, etc and he has a meltdown screaming bloody murder at the top of his lungs. It feels like at any moment the police or DSS will show up. Have him bang his head on the furniture because he just has to. Or have a 12 month old that won't talk and just grunts and is taught sign language because they can't tell you if he will ever speak, but they can't tell you why.
Those are all the reasons that I am doing this and pushing so hard and because I care, I love my son and I hope it's good enough!
I try very hard to get the kids out when I can. Typically that has meant the pool because we are members so I don't have to pay to get them in, they love it and I don't have to worry quite so much about them. Until recently anyway because Thomas is so wrapped up in his brother. Of course his brother has seen friends there and wants to be with them. Now I don't expect that people are going to sit and talk to me at the pool, even if they are people who know me. I've come to realize now that a lot of people sometimes shun away from us and that's ok. Yesterday we had an incident where a child at the pool took a toy out of Thomas' hand (after Thomas threw one) and threw it in the big pool. Of course to this child one bad turn deserves another, however as this child began to explain to my Autistic son that his horrible behavior deserved for that toy to be thrown in the pool was where my emotion began to run. Thomas cannot understand things like this when you tell him. To him he saw the action of the toy being taken away and my oldest son tried to come between the other child and Thomas to no avail and however was unclear on the right thing to say knowing Thomas was extremely upset and could not comprehend what this older child was saying to him. I of course made my children leave (it was time to go anyway) and was later "scolded" in an email by this parent.
I do get very emotionally involved when it comes to Thomas and most of the time I can't separate myself from that. I am very involved and I am on a mission to give out as much information about Autism and Autism Awareness as I can. I tried very hard to get help for my son when he was 2 and no one would help me. It took me 2 years to get anyone to listen to anything I was saying and to really hear me. I'm not saying we could have fixed anything, no he would still have Autism, but maybe just maybe some of the things he has going on might not be as severe.
To the parents that think I go to far with awareness, try having your child not look you in the eye when they speak to you. Or when you are sitting at the dinner table have them tell you "don't look at me" "stop talking to me" Have your child throw a tantrum for hours on end with no stopping, nothing you can do to console them. Be in a restaurant and they must get up and jump behind their chair, run around the table or just "stim" in some way while the people around you just watch. Be in Walmart, Target, etc and he has a meltdown screaming bloody murder at the top of his lungs. It feels like at any moment the police or DSS will show up. Have him bang his head on the furniture because he just has to. Or have a 12 month old that won't talk and just grunts and is taught sign language because they can't tell you if he will ever speak, but they can't tell you why.
Those are all the reasons that I am doing this and pushing so hard and because I care, I love my son and I hope it's good enough!
Wednesday, June 30, 2010
And the greatest of these is Love!
Today is our Team Thomas meeting to discuss our fundraisers for the summer so that we may prepare to walk in October for the Autism Society. In January I celebrated the 4th birthday of my twins and I did not think that just before my own birthday I would be walking in the Autism walk for my own son.
I'm reminded today of how much love is surrounding us by so many people. The Beatles song said it well "All you need is love" Of course we need a little more than that. My favorite is Faith, Hope and Love and the greatest of these is love.... Another says "so much of what we know of love we learn at home" I hope that is true! I hope that I'm teaching my children a lot, but most of all how much they are loved!
Back to the outpouring of love that we are receiving, there is an overwhelming number of people showing up tonight. We have our first fundraiser on Saturday and so many people have said they are coming, or if they can't come they are willing to purchase something to help out! We already know when a few fundraisers will be and people are willing to help wherever they are needed. We are also up to 8 walkers in October and I'm sure we will see that number grow! I'm simply amazed how the love and support from people, some that we have just met, some we don't even know and others we've known for years is just overflowing! We truly are blessed and it makes my heart feel good. It also gives me hope for Thomas' future, that he will be surrounded by people who love him.
I just want to thank everyone who has been reading and who is helping in some way. I want to thank those who are praying, the phone calls, any notes or emails. I have to say that the journey is lifelong, hard and treacherous, but with friends, family .... faith, hope and love we can get through anything!
"To love another person is to see the face of God."
-Les Miserables
"Spread love everywhere you go: first of all in your own house. Give love to your children, to your wife or husband, to a next door neighbor... Let no one ever come to you without leaving better and happier. Be the living expression of God's kindness; kindness in your face, kindness in your eyes, kindness in your smile, kindness in your warm greeting."
-Mother Theresa
"If you judge people, you have no time to love them."
-Mother Theresa
"We come to love not by finding a perfect person, but by learning to see an imperfect person perfectly." -- Anonymous
I'm reminded today of how much love is surrounding us by so many people. The Beatles song said it well "All you need is love" Of course we need a little more than that. My favorite is Faith, Hope and Love and the greatest of these is love.... Another says "so much of what we know of love we learn at home" I hope that is true! I hope that I'm teaching my children a lot, but most of all how much they are loved!
Back to the outpouring of love that we are receiving, there is an overwhelming number of people showing up tonight. We have our first fundraiser on Saturday and so many people have said they are coming, or if they can't come they are willing to purchase something to help out! We already know when a few fundraisers will be and people are willing to help wherever they are needed. We are also up to 8 walkers in October and I'm sure we will see that number grow! I'm simply amazed how the love and support from people, some that we have just met, some we don't even know and others we've known for years is just overflowing! We truly are blessed and it makes my heart feel good. It also gives me hope for Thomas' future, that he will be surrounded by people who love him.
I just want to thank everyone who has been reading and who is helping in some way. I want to thank those who are praying, the phone calls, any notes or emails. I have to say that the journey is lifelong, hard and treacherous, but with friends, family .... faith, hope and love we can get through anything!
"To love another person is to see the face of God."
-Les Miserables
"Spread love everywhere you go: first of all in your own house. Give love to your children, to your wife or husband, to a next door neighbor... Let no one ever come to you without leaving better and happier. Be the living expression of God's kindness; kindness in your face, kindness in your eyes, kindness in your smile, kindness in your warm greeting."
-Mother Theresa
"If you judge people, you have no time to love them."
-Mother Theresa
"We come to love not by finding a perfect person, but by learning to see an imperfect person perfectly." -- Anonymous
Tuesday, June 29, 2010
Valid Fears
My entire world changed on March 30. I know that other parents of special needs children, children with disabilities, parents who have lost children, children born prematurely will all say that they feel the same way. All three of my children were preemies and all three were in the NICU. I know what it is to have fears and concerns when it comes to your children. I think that if they are your fears then they are valid, no one can push them aside and say "that's silly". Just like an opinion, everyone is entitled.
Thomas has outbursts. He's autistic and I don't think that I have read about or encountered many autistic children that at some point have not had an outburst of some kind. Lately he is very taken with his older brother and wants to do everything that he does. This is ok for the most part, but his brother needs some time too. I've said before that I really think my other two children need an outlet, friends. Yesterday we went to the pool. Thomas loves the pool and he enjoys the water. Luckily in the morning there was a friend for Thomas and his brother. This worked out great and Thomas left his older brother alone so that he could have some time to himself. I got along great with only a minor meltdown in the beginning. I decided that the pool was going so great the last couple of weeks, we'd go back yesterday evening. Only this time there was someone for Thomas' brother and sister but not for Thomas. This happens, right? Of course it does! Only problem is that Thomas doesn't understand, receptive language is low for him. Explaining to him why his brother needs a moment or can't play with him right now causes a meltdown. He doesn't get it. He began thrashing in the pool and screaming with about 15-20 other people looking on. We attempted to calm, many times over. We took him out of the pool, my husband swam with him, the end result was more screaming and us leaving.
My fears are.... well there are many. I fear that someone will see this and call the police, lucky for me I know them all. I fear they will think we hurt him when in reality, it's just how every day life is. I work with him to help him understand but if I could show you his IQ score you would see that he is extremely intelligent until you get to his receptive language. I fear that other people will not want to associate with him, with his siblings and eventually with us. Silly.....yes, but my valid fear. Have you ever heard someone say "oh my daughter has an autistic child in her class or a handicapped kid in her class, etc" ? Now don't get me wrong because there is nothing wrong with this, but I have to say that I wonder if the mother's from last year have said that.....and Thomas is "that kid".
Maybe I'm not saying everything the way that I'm feeling it, it's harder when you try to write it. I don't care what others think, I'm past that point. However, yesterday what was so gut wrenching was the look on people's faces as I tried with all my might to help him and even I as his mother can't do anything. I have to watch him violently thrash in the pool and scream. No, I didn't care what they thought, not about me anyway... the thought running through my mind was what will happen when he's older, what happens to him one day when I'm not there, will people just turn and stare at him. My fear is any negative things they may think of him.
A dear friend told me yesterday to write my thoughts down, the good and the bad, and then I can see how things lie. She said that this will certainly help me to focus on the good and to also see where Thomas is having the most trouble and hopefully be able to pinpoint some triggers. I think she is smart! I also hope that by writing here I'm helping someone, I'm educating someone who doesn't know what Autism is or that I'm just helping myself by putting out there what's on my mind. The Team Thomas fundraisers are not only about raising funds for the Autism Society, but about raising awareness this summer. Sometimes it's not all about us, it's about the journey we are on.
Thomas has outbursts. He's autistic and I don't think that I have read about or encountered many autistic children that at some point have not had an outburst of some kind. Lately he is very taken with his older brother and wants to do everything that he does. This is ok for the most part, but his brother needs some time too. I've said before that I really think my other two children need an outlet, friends. Yesterday we went to the pool. Thomas loves the pool and he enjoys the water. Luckily in the morning there was a friend for Thomas and his brother. This worked out great and Thomas left his older brother alone so that he could have some time to himself. I got along great with only a minor meltdown in the beginning. I decided that the pool was going so great the last couple of weeks, we'd go back yesterday evening. Only this time there was someone for Thomas' brother and sister but not for Thomas. This happens, right? Of course it does! Only problem is that Thomas doesn't understand, receptive language is low for him. Explaining to him why his brother needs a moment or can't play with him right now causes a meltdown. He doesn't get it. He began thrashing in the pool and screaming with about 15-20 other people looking on. We attempted to calm, many times over. We took him out of the pool, my husband swam with him, the end result was more screaming and us leaving.
My fears are.... well there are many. I fear that someone will see this and call the police, lucky for me I know them all. I fear they will think we hurt him when in reality, it's just how every day life is. I work with him to help him understand but if I could show you his IQ score you would see that he is extremely intelligent until you get to his receptive language. I fear that other people will not want to associate with him, with his siblings and eventually with us. Silly.....yes, but my valid fear. Have you ever heard someone say "oh my daughter has an autistic child in her class or a handicapped kid in her class, etc" ? Now don't get me wrong because there is nothing wrong with this, but I have to say that I wonder if the mother's from last year have said that.....and Thomas is "that kid".
Maybe I'm not saying everything the way that I'm feeling it, it's harder when you try to write it. I don't care what others think, I'm past that point. However, yesterday what was so gut wrenching was the look on people's faces as I tried with all my might to help him and even I as his mother can't do anything. I have to watch him violently thrash in the pool and scream. No, I didn't care what they thought, not about me anyway... the thought running through my mind was what will happen when he's older, what happens to him one day when I'm not there, will people just turn and stare at him. My fear is any negative things they may think of him.
A dear friend told me yesterday to write my thoughts down, the good and the bad, and then I can see how things lie. She said that this will certainly help me to focus on the good and to also see where Thomas is having the most trouble and hopefully be able to pinpoint some triggers. I think she is smart! I also hope that by writing here I'm helping someone, I'm educating someone who doesn't know what Autism is or that I'm just helping myself by putting out there what's on my mind. The Team Thomas fundraisers are not only about raising funds for the Autism Society, but about raising awareness this summer. Sometimes it's not all about us, it's about the journey we are on.
Thursday, June 24, 2010
Share the Experience
This blog I've thought a lot about writing, mostly because it's a two part thing. I'll start with the first part and hope that I can make the two sort of flow together.... I'm not always very good at that. In fact I think that this is rather sad. I've always written that I often had ideas about how I pictured Thomas being when he was first born. I think all mother's do. When you first see them you think all these wonderful thoughts about how they will grow up to be, sort of a flashforward of sorts. We all like to share those moments with family, friends and loved ones. All of your most exciting moments in life, tragedy, birthdays, huge events, etc are all shared with someone. Of course when you are married you share those all with your spouse. Most people have a best friend to share those moments with as well. Growing up I had a best friend. We did everything together, went everywhere and literally shared all of life's ups and downs together. Now as an adult I don't have that anymore. Yes my husband is my best friend, but a best "girl" friend is much different. There is no one to share these moments with, no one to call when I'm having a bad day, no one to go to the movies with, no one to have a cup of coffee with, go for a walk with, no one to pick me up when I'm down or the biggest thing.....for me to help them!
When you have twins they often share a lot. They are together all the time and they just know how to fix things for each other. My daughter does that for Thomas. She has always been there for him and she knows how to solve the problems. However, she has no girlfriends. She doesn't get invited to play dates, she doesn't have a best friend, no one comes over to play with her, etc. I feel bad for her because I remember how wonderful it was to have someone in my life. I hope that by splitting them apart next year and getting Thomas the help he needs, she will be able to form friendships and possibly even find a best friend! Maybe Mom will too....
As for getting Thomas everything he needs, I'm really feeling the need to go to work. I'm feeling very drawn between leaving them but helping to supply our family with certain things. I won't go into great detail here but it's very sad for me and very hard to think that I can't do everything for Thomas that he needs or that we constantly have to ask for help. I really wish that I could find something during the time they are going to be in school and then I can still devote myself to being with him when he's home. It's very difficult to try to "teach" someone else how to deal daily with everything. Not to mention there are still Dr's appointments and therapies, etc. I could work at night but I guess sleep is important. I've thought for years that getting this certain certification was going to solve everything but I now know that it isn't going to fix anything, there isn't going to be anything for me to do.
I'll end all this by saying that I don't know who reads this, I think someone must! Thank you if you do and for today just be there for someone and share their experience, joys, happiness, sadness and most of all love!
When you have twins they often share a lot. They are together all the time and they just know how to fix things for each other. My daughter does that for Thomas. She has always been there for him and she knows how to solve the problems. However, she has no girlfriends. She doesn't get invited to play dates, she doesn't have a best friend, no one comes over to play with her, etc. I feel bad for her because I remember how wonderful it was to have someone in my life. I hope that by splitting them apart next year and getting Thomas the help he needs, she will be able to form friendships and possibly even find a best friend! Maybe Mom will too....
As for getting Thomas everything he needs, I'm really feeling the need to go to work. I'm feeling very drawn between leaving them but helping to supply our family with certain things. I won't go into great detail here but it's very sad for me and very hard to think that I can't do everything for Thomas that he needs or that we constantly have to ask for help. I really wish that I could find something during the time they are going to be in school and then I can still devote myself to being with him when he's home. It's very difficult to try to "teach" someone else how to deal daily with everything. Not to mention there are still Dr's appointments and therapies, etc. I could work at night but I guess sleep is important. I've thought for years that getting this certain certification was going to solve everything but I now know that it isn't going to fix anything, there isn't going to be anything for me to do.
I'll end all this by saying that I don't know who reads this, I think someone must! Thank you if you do and for today just be there for someone and share their experience, joys, happiness, sadness and most of all love!
Tuesday, June 22, 2010
Prayer
I think that in life it's all we have sometimes. One Sunday morning our preacher did his sermon and told about how we pray when we are in a jam, pray when we really need something, pray when you want something to go your way, etc. Do you ever truly pray when it's just the right thing to do ?
I have said that for the last year through this struggle that I pray as soon as my feet hit the floor. I have to or I won't make it through the day. I have to pray for Thomas and my other children. I pray for myself and for my own freewill shall we say. I pray for the others around me. I have to pray many times during the day. I often just have to stop and take in a deep breath and call God's name, he knows what I'm doing and then go on. I also pray just before I go to bed. Now I'm not talking about drop to your knees like when I was a kid and kneel beside the bed. I'm talking about taking moments to myself when I can with God.
Recently on Facebook I've been asking for prayer for Thomas. I notice that not so many people respond to that. I'm wondering why that is? Let me go on though about Thomas. We are on his 4th medicine for tantrums, a mood stabilizer that can (a very very low %) have some side effects. He is also on something to help him sleep. I'm feeling anxious and nervous myself, praying and praying that I haven't given him something that is going to harm him in any way. I'm praying that this will help him. I'm praying that none of those terrible things she told me about will happen because....... I'm not sure I could live with myself. I then have to remember that I'm just doing the best that I can and the best that I know for my son as the present time. I'm doing what a Dr, with more education in this area than myself has advised me to do.
So for today I'm praying!
I have said that for the last year through this struggle that I pray as soon as my feet hit the floor. I have to or I won't make it through the day. I have to pray for Thomas and my other children. I pray for myself and for my own freewill shall we say. I pray for the others around me. I have to pray many times during the day. I often just have to stop and take in a deep breath and call God's name, he knows what I'm doing and then go on. I also pray just before I go to bed. Now I'm not talking about drop to your knees like when I was a kid and kneel beside the bed. I'm talking about taking moments to myself when I can with God.
Recently on Facebook I've been asking for prayer for Thomas. I notice that not so many people respond to that. I'm wondering why that is? Let me go on though about Thomas. We are on his 4th medicine for tantrums, a mood stabilizer that can (a very very low %) have some side effects. He is also on something to help him sleep. I'm feeling anxious and nervous myself, praying and praying that I haven't given him something that is going to harm him in any way. I'm praying that this will help him. I'm praying that none of those terrible things she told me about will happen because....... I'm not sure I could live with myself. I then have to remember that I'm just doing the best that I can and the best that I know for my son as the present time. I'm doing what a Dr, with more education in this area than myself has advised me to do.
So for today I'm praying!
Sunday, June 20, 2010
Father's Day!
Happy Father's Day!! I hope if you are a father, have a father or a husband or even someone in your life that is like a father that you will let them know how much you love them today! I'm blessed to have a great husband who works very hard so that we can have what we need. If I haven't nagged hard enough before he works for the Police Department as a CSI.....technical term Forensic Analyst. He does a lot for us though and I'm very grateful! Not to mention that he loves me with all of his heart and I couldn't ask for more than that.
I have a wonderful step father who loves my kids. He comes by nearly every single day. He and my mother live very close (within walking distance) and he does a lot for us too! He has been in my life since I was about 11 or 12. Of course at that age it was much harder to accept him, but I have come to love and respect him as an adult. I even call him Dad on occasion.
My biological father isn't in my life and hasn't been for about 3 years now. This has been very hard for me because I don't understand how you just let one of your children go like that. I look at my children and can't imagine doing that. He knows nothing about Thomas. I have a niece and a nephew that I use to spend all my time with when they were little that I haven't seen in years. I can't even begin to tell you how that kills me. I don't think my nephew even knows me anymore. I have a sister that I haven't heard from and a brother. These are not my mother's children, these are half siblings. They all live within 5 miles or so of me. Yes I could pick up the phone but for many years I did pick up the phone and was the person who often initiated contact even when I felt they didn't want that, I grew up and decided that I needed to see if anyone would contact me. No one has and ...... well all this is to say tell people you love them if you do. I look at my 3 children (just like there are 3 of us) and I just can't imagine how they can't always love each other and want to be together or help each other.
I had a wonderful grandfather who was probably my best friend and like my father. He died 2 years ago. I miss him terribly. Thomas is a lot like him, in many ways. Very smart and always knows exactly what he wants. My grandfather was a brilliant civil engineer who came up from pretty much nothing and graduated top of his class at NC State. He was my hero and on Father's Day I would always call him.
One day my boys may be father's and I hope they know how important that is! I hope they will still let me be a part of their Father's Day and continue to make a fuss over their Father! Enjoy your day!
I have a wonderful step father who loves my kids. He comes by nearly every single day. He and my mother live very close (within walking distance) and he does a lot for us too! He has been in my life since I was about 11 or 12. Of course at that age it was much harder to accept him, but I have come to love and respect him as an adult. I even call him Dad on occasion.
My biological father isn't in my life and hasn't been for about 3 years now. This has been very hard for me because I don't understand how you just let one of your children go like that. I look at my children and can't imagine doing that. He knows nothing about Thomas. I have a niece and a nephew that I use to spend all my time with when they were little that I haven't seen in years. I can't even begin to tell you how that kills me. I don't think my nephew even knows me anymore. I have a sister that I haven't heard from and a brother. These are not my mother's children, these are half siblings. They all live within 5 miles or so of me. Yes I could pick up the phone but for many years I did pick up the phone and was the person who often initiated contact even when I felt they didn't want that, I grew up and decided that I needed to see if anyone would contact me. No one has and ...... well all this is to say tell people you love them if you do. I look at my 3 children (just like there are 3 of us) and I just can't imagine how they can't always love each other and want to be together or help each other.
I had a wonderful grandfather who was probably my best friend and like my father. He died 2 years ago. I miss him terribly. Thomas is a lot like him, in many ways. Very smart and always knows exactly what he wants. My grandfather was a brilliant civil engineer who came up from pretty much nothing and graduated top of his class at NC State. He was my hero and on Father's Day I would always call him.
One day my boys may be father's and I hope they know how important that is! I hope they will still let me be a part of their Father's Day and continue to make a fuss over their Father! Enjoy your day!
Wednesday, June 16, 2010
One Step Forward
We take so many backwards. This is a vicious cycle. I feel like I'm on a roller coaster. That's it, it's like being on one of those hideous rides at the fair that goes sideways, upside down and loops around and you want to get off as soon as it starts but you really can't and you know it. Mind you.... I don't like those rides and don't get on in the first place!
For anyone who knows me, I'm snappy, sarcastic and I don't take stuff from people. I'm a very personable person, don't get me wrong.....but I just lay it out there. I'm very honest and open I guess you'd say. However this experience with my son has humbled me I'd like to think. I'm still sarcastic, yes (I can hear my friends reading this now....) but now my main response to everything is just grow up.
So back to my point, I'm getting a little off track and when I explain you will know why. The new medicine isn't working either. Today is only day 2 and it has made him sick. We had a Dr' s appointment this morning in Greenville, NC and saw the Social Worker that we've been seeing for months now. I told her what we've been doing and trying. She wasn't happy with the new med they just put him on. I thought GREAT, what am I supposed to do now? So I take him back on Monday morning, bright and early. Mind you I got up late this morning, drove in the pouring rain, but she got to experience what we've been experiencing.....
Thomas is now chatty, no not just chatty, he is talking non stop and stuttering. He then flips and says Don't talk to me, Don't look at me and then the next thing you know he's screaming, yelling or crying. Talk about frustrating. So this morning he had no contact with her at all, but talked constantly to me about everything under the sun. All the way home he talked and talked and talked until he got sick about a mile from home. He hadn't eaten anything at all and took the medicine on an empty stomach.
He's refusing to eat more often than he's eating. He has trouble sleeping and if any of you are on my facebook page.... you know we lost his My My Mommy. This would be his blanket. It's gone and we've torn apart two houses looking for it. It is just pieces of a blanket now that we've knotted together, but none the less it's gone! We've asked him numerous times where he put it, did he throw it somewhere and he has no recollection of where it could be.
I'm exhausted, my husband is tired and he works constantly and is rarely home. I work part time and am working hard to get a certification that I've wanted for years! It's hard to explain this to family and friends and have them truly understand what is going on or what we need help with. Right now I just need support, friends and lots of encouragement because when I step forward I constantly have one foot lingering behind somewhere
For anyone who knows me, I'm snappy, sarcastic and I don't take stuff from people. I'm a very personable person, don't get me wrong.....but I just lay it out there. I'm very honest and open I guess you'd say. However this experience with my son has humbled me I'd like to think. I'm still sarcastic, yes (I can hear my friends reading this now....) but now my main response to everything is just grow up.
So back to my point, I'm getting a little off track and when I explain you will know why. The new medicine isn't working either. Today is only day 2 and it has made him sick. We had a Dr' s appointment this morning in Greenville, NC and saw the Social Worker that we've been seeing for months now. I told her what we've been doing and trying. She wasn't happy with the new med they just put him on. I thought GREAT, what am I supposed to do now? So I take him back on Monday morning, bright and early. Mind you I got up late this morning, drove in the pouring rain, but she got to experience what we've been experiencing.....
Thomas is now chatty, no not just chatty, he is talking non stop and stuttering. He then flips and says Don't talk to me, Don't look at me and then the next thing you know he's screaming, yelling or crying. Talk about frustrating. So this morning he had no contact with her at all, but talked constantly to me about everything under the sun. All the way home he talked and talked and talked until he got sick about a mile from home. He hadn't eaten anything at all and took the medicine on an empty stomach.
He's refusing to eat more often than he's eating. He has trouble sleeping and if any of you are on my facebook page.... you know we lost his My My Mommy. This would be his blanket. It's gone and we've torn apart two houses looking for it. It is just pieces of a blanket now that we've knotted together, but none the less it's gone! We've asked him numerous times where he put it, did he throw it somewhere and he has no recollection of where it could be.
I'm exhausted, my husband is tired and he works constantly and is rarely home. I work part time and am working hard to get a certification that I've wanted for years! It's hard to explain this to family and friends and have them truly understand what is going on or what we need help with. Right now I just need support, friends and lots of encouragement because when I step forward I constantly have one foot lingering behind somewhere
Tuesday, June 15, 2010
Hope......
where would I be without any? I'd be lost and I'd never make it through a day. I have to have some kind of hope, at least a little. I've had to have a lot of hope the last several years. I had to have hope I wouldn't die, hope I'd have more children, hope they would live, hope I wouldn't die again, hope that Thomas would be ok and now hope that each every day, each and every minute we can make it through. That's also Faith! I have a wonderful church family that has been supportive. I'm not sure anyone ever truly understands the depth of what happens here on a daily basis. Even blogging about it can't give you a day to day, play by play. Some have been more supportive than others but I always find myself "feeling alone". I just read an article in a magazine where the woman describes her Autistic son and says that in the beginning she had the hope that she could cure him, teach him all those things he was lacking. One day she just realized, you just have to accept that this is how it is and while he can learn to do things he will never be cured. You just have to have hope that you can teach them all they need to know, that no one is going to take advantage of them and that you are making all of the right decisions.
Last week we found out that Thomas will attend the Autistic preschool next year. This means separating him and his sister. This is a huge deal for me and strikes me right in the center of my heart. Let me back track and start by saying that when they were born I had this image in my mind of how things would go.... don't we all? They would go to school together, play together and be best friends. That image is gone. Many people will say (and have said) well that doesn't mean that won't happen. Now this is true, but what I envisioned is no longer there. Any mother of a special needs child can relate. I have hope though that he will do the very best he can and when in Kindergarten he will blow them away. I have hope that his sister will make friends and finally be invited to play with other children her age. I have hope that she will no longer feel the need to watch out for her brother every single day. I have hope that when they come home, they will be each others best friend.
My mind often goes and therefore I can't remember if I mentioned the battle with sleep and medication. I have discovered that for children with Autism and on the Autism Spectrum this is a constant battle. Thomas is one of those. We are in the sleep battle now, not sleeping very well. At age 4 1/2 he can get up multiple times during the night and walk around the house. We have tried some different medicines that are to help with both the tantrums and the sleep. So far they have not been right for him. We are now trying something else, but I have hope. I have hope that we will find what works. I have hope that he will sleep like a normal child or at least all night very soon. I have hope that we will get his behavior calmed down, maybe not completely under control, but better.
If I've learned nothing else through this entire process thus far, I've learned this: Autism is ever changing, it doesn't magically go away and if I had that magic wand I can't tell you I'd use it. Thomas is who he is and who he should be. People are ignorant, but we have the resources to educate them. When it comes to my son, I have hope!
Last week we found out that Thomas will attend the Autistic preschool next year. This means separating him and his sister. This is a huge deal for me and strikes me right in the center of my heart. Let me back track and start by saying that when they were born I had this image in my mind of how things would go.... don't we all? They would go to school together, play together and be best friends. That image is gone. Many people will say (and have said) well that doesn't mean that won't happen. Now this is true, but what I envisioned is no longer there. Any mother of a special needs child can relate. I have hope though that he will do the very best he can and when in Kindergarten he will blow them away. I have hope that his sister will make friends and finally be invited to play with other children her age. I have hope that she will no longer feel the need to watch out for her brother every single day. I have hope that when they come home, they will be each others best friend.
My mind often goes and therefore I can't remember if I mentioned the battle with sleep and medication. I have discovered that for children with Autism and on the Autism Spectrum this is a constant battle. Thomas is one of those. We are in the sleep battle now, not sleeping very well. At age 4 1/2 he can get up multiple times during the night and walk around the house. We have tried some different medicines that are to help with both the tantrums and the sleep. So far they have not been right for him. We are now trying something else, but I have hope. I have hope that we will find what works. I have hope that he will sleep like a normal child or at least all night very soon. I have hope that we will get his behavior calmed down, maybe not completely under control, but better.
If I've learned nothing else through this entire process thus far, I've learned this: Autism is ever changing, it doesn't magically go away and if I had that magic wand I can't tell you I'd use it. Thomas is who he is and who he should be. People are ignorant, but we have the resources to educate them. When it comes to my son, I have hope!
Wednesday, June 2, 2010
What It's All About?
Tomorrow is my 10 year anniversary and I've often wondered what is life all about? Not the meaning of life per say but life should be what you make it right? What about when things and obstacles get in the way of those dreams and ambitions you have set for yourself? Can you still keep your eye on the prize?
From the time I was a teenager (and this is because I don't remember much of my life prior to that) I've been very head strong. I always do what I want to do and typically don't let anyone or anything stand in my way. I will find a way to get something done when I want it badly enough. Here's a little background history on myself so you will know a little more about me....
When I was 15 years old I was dating a guy who I thought was ok but I was wrong. About an hour before my softball tryouts he raped me. It took me a very long time to tell anyone and by the time I did, they couldn't find him. I was a teenager who hated high school because I was overweight, not just overweight, but fat. I got picked on a lot. However, I did have a boyfriend from 16 to about 17 1/2. Again someone else I thought was a winner who turned out to be a loser! He beat me frequently, put me down and was just mean. He convinced me to leave home for 9 days and during that time he and his brother tattooed my arms with a sewing needle and ballpoint pin ink and thread. It was the most painful thing I think I've ever been through and as you know I've had three children. They put two things on one arm and one on the other. It wasn't long after that I went home and then left school. There was too much going on. I got my GED and walked the same year my regular graduating class did even though I finished long before they did.
I had already met my soon to be husband and we got married when I was 19. Exactly 10 months later my first son was born. Not long after having him they discovered that I had Endometriosis and would have to take Lupron which nearly killed me. It left me confined to my bed for months. I was determined to have more children but was told it would be nearly impossible. I decided to lose weight and lost about 115 lbs. I met every stubborn doctor along the way too. I finally went back and begged to have more children and was given one try. As most people know.... I had twins! But that wasn't going to be easy either. They were born at 35 weeks because my liver failed and platelet count dropped. Then the babies were in the NICU.
Thomas was in for 22 days and his sister was in for 15 days. When they were about 5 months old I had to have a partial hysterectomy. I should also mention that from 1999 until the present day I've had 10 surgeries. They are all for various things and various reasons and various parts of me. After getting everyone settled I continued on with something I had already started, my Bachelors Degree. I was doing this online! I had started just after I got sick from the Lupron in 2004 and I finished in 2007. I got a BS in Criminal Justice. I desperately wanted to go and walk across the stage, but that wasn't going to happen either....
There are so many other things that have happened in my life and I could keep going on. I guess my point is that life can always be worse and it's all about what you make of it. If you make it bad then chances are it will always be bad. If you keep a positive outlook and remember that sometimes you aren't in charge then good things will happen. I firmly believe that God has a plan for everything and one day I will be there with him and he will let me in on the secret, until then..... Life is good!
From the time I was a teenager (and this is because I don't remember much of my life prior to that) I've been very head strong. I always do what I want to do and typically don't let anyone or anything stand in my way. I will find a way to get something done when I want it badly enough. Here's a little background history on myself so you will know a little more about me....
When I was 15 years old I was dating a guy who I thought was ok but I was wrong. About an hour before my softball tryouts he raped me. It took me a very long time to tell anyone and by the time I did, they couldn't find him. I was a teenager who hated high school because I was overweight, not just overweight, but fat. I got picked on a lot. However, I did have a boyfriend from 16 to about 17 1/2. Again someone else I thought was a winner who turned out to be a loser! He beat me frequently, put me down and was just mean. He convinced me to leave home for 9 days and during that time he and his brother tattooed my arms with a sewing needle and ballpoint pin ink and thread. It was the most painful thing I think I've ever been through and as you know I've had three children. They put two things on one arm and one on the other. It wasn't long after that I went home and then left school. There was too much going on. I got my GED and walked the same year my regular graduating class did even though I finished long before they did.
I had already met my soon to be husband and we got married when I was 19. Exactly 10 months later my first son was born. Not long after having him they discovered that I had Endometriosis and would have to take Lupron which nearly killed me. It left me confined to my bed for months. I was determined to have more children but was told it would be nearly impossible. I decided to lose weight and lost about 115 lbs. I met every stubborn doctor along the way too. I finally went back and begged to have more children and was given one try. As most people know.... I had twins! But that wasn't going to be easy either. They were born at 35 weeks because my liver failed and platelet count dropped. Then the babies were in the NICU.
Thomas was in for 22 days and his sister was in for 15 days. When they were about 5 months old I had to have a partial hysterectomy. I should also mention that from 1999 until the present day I've had 10 surgeries. They are all for various things and various reasons and various parts of me. After getting everyone settled I continued on with something I had already started, my Bachelors Degree. I was doing this online! I had started just after I got sick from the Lupron in 2004 and I finished in 2007. I got a BS in Criminal Justice. I desperately wanted to go and walk across the stage, but that wasn't going to happen either....
There are so many other things that have happened in my life and I could keep going on. I guess my point is that life can always be worse and it's all about what you make of it. If you make it bad then chances are it will always be bad. If you keep a positive outlook and remember that sometimes you aren't in charge then good things will happen. I firmly believe that God has a plan for everything and one day I will be there with him and he will let me in on the secret, until then..... Life is good!
Tuesday, June 1, 2010
Put your walking shoes on
I have to say that I always a struggle with the title of these blogs for the longest time before I actually start writing. I could sit here and write forever, but coming up with a title takes a long time. One day I may just put a bunch of jumbled letters up there. Don't be surprised....well for those of you who know me, I'm just sayin.
Let me start this off by if you are a praying person, please stop for a moment and send one up for all of those 3, 4, and 5th graders taking the EOG's today. My 3rd grader is one of them and while he doesn't know it, I'm nervous for them!
So "put your walking shoes on" means just that. We are walking on October 9 in Raleigh, North Carolina in the Autism Walk. This is going to be a great event, I already know it. We are building a team called Team Thomas. I know, very original. It was my idea if you couldn't tell. We are in the process of having shirts made that will say All Aboard for Autism Awareness. We are going to be fundraising all summer and really hoping to get the community involved and raise awareness for Autism.
The walk is a 5K (3 miles) you can walk or run. You register online at http://www.kintera.org/faf/login/teamPageEdit.asp?ievent=425835&lis=0&kntae425835=E62CE36064844746BE41F240998D542D&page=view
It's $25.00 for the registration fee and they will send you a shirt as well, but like I said we are having our own TEAM shirts made! We would love to have an outstanding number of people there that day. There is also a kids walk.
All of the proceeds that we get from any fundraisers and the registration fees go directly to the Autism Society of North Carolina. Autism now affects 1 in 91 children. That number is falling still. It affects more boys than girls.
I've always said I don't know who reads this, who steps into our world, but if you are I hope you will consider joining us on October 9 and even this summer. Join Team Thomas!
Let me start this off by if you are a praying person, please stop for a moment and send one up for all of those 3, 4, and 5th graders taking the EOG's today. My 3rd grader is one of them and while he doesn't know it, I'm nervous for them!
So "put your walking shoes on" means just that. We are walking on October 9 in Raleigh, North Carolina in the Autism Walk. This is going to be a great event, I already know it. We are building a team called Team Thomas. I know, very original. It was my idea if you couldn't tell. We are in the process of having shirts made that will say All Aboard for Autism Awareness. We are going to be fundraising all summer and really hoping to get the community involved and raise awareness for Autism.
The walk is a 5K (3 miles) you can walk or run. You register online at http://www.kintera.org/faf/login/teamPageEdit.asp?ievent=425835&lis=0&kntae425835=E62CE36064844746BE41F240998D542D&page=view
It's $25.00 for the registration fee and they will send you a shirt as well, but like I said we are having our own TEAM shirts made! We would love to have an outstanding number of people there that day. There is also a kids walk.
All of the proceeds that we get from any fundraisers and the registration fees go directly to the Autism Society of North Carolina. Autism now affects 1 in 91 children. That number is falling still. It affects more boys than girls.
I've always said I don't know who reads this, who steps into our world, but if you are I hope you will consider joining us on October 9 and even this summer. Join Team Thomas!
Thursday, May 27, 2010
There are just some people
I have known since Thomas was about 18 months old that he was "different and unique" and I embraced that and even tried to get him help at that age. Of course as some of our friends and family know the verdict of that help was deemed inconclusive. I grew up with a mother who has worked her entire life in the mental health profession. I have a BS in Criminal Justice but the majority of my elective classes that I chose to take were in mental health. It's a passion for me to embrace that and to teach others that you don't shut out people because they are different. The world doesn't revolve around you.... with that said, you also can't fix stupid. I'm just sayin.... So I'm going to hop on my soap box for a moment because there are some things I just need to say because in this world there are just some people.
Why is that when you try to ask someone to help you out with a fundraiser or you are ASKING FOR HELP (this will be a repetitive key phrase) they are going to try to get their 2 cents worth? Now what is that about? Someone please explain to me how it is if you come up with an idea and ask someone for a little assistance then suddenly it becomes something that is going to take up their time and therefore will cost you money.
Why is it when you are constantly telling people that you need HELP, I mean outright doing everything but screaming from your front yard, they will help everyone but you? They will send an email to your inbox telling you that you need to go and help someone else because they are in crisis.....like you have nothing better to do and there is not a thing going on in your life. Yet no one has come to your door (yes I mean mine) and offered to lend a hand, ask how things are....and I have 3 children
Why is that a neighbor must walk over here and when she finds out that your son has Autism that she feels the need to offer you pity (I don't want your pity) and then when asking what you are going to do when it's time for school..... I say he's going to the public school, has the audacity to look at me and ask: "What you are going to Mainline him?" WTH??? Seriously? I mean this is the kind of thing that I want my child to have to put up with? Yes I am sending him to school with his sister, he's smart, he talks, he knows things....why in the world would I not send him to school?
If this is the kind of thing that I have to deal with from people then what will it be like for him when he does go to school or gets older? How will people treat him? If I can't get "so called friends" to help or be there for me, him, us then who will be willing to be there for him in his life?
There is serious need for education on Autism, Autism Spectrum and what it is, what it does and how children are different, not retarded...not incapable....not handicapped.....just DIFFERENT!
Off the soapbox now and off to horse therapy!
Why is that when you try to ask someone to help you out with a fundraiser or you are ASKING FOR HELP (this will be a repetitive key phrase) they are going to try to get their 2 cents worth? Now what is that about? Someone please explain to me how it is if you come up with an idea and ask someone for a little assistance then suddenly it becomes something that is going to take up their time and therefore will cost you money.
Why is it when you are constantly telling people that you need HELP, I mean outright doing everything but screaming from your front yard, they will help everyone but you? They will send an email to your inbox telling you that you need to go and help someone else because they are in crisis.....like you have nothing better to do and there is not a thing going on in your life. Yet no one has come to your door (yes I mean mine) and offered to lend a hand, ask how things are....and I have 3 children
Why is that a neighbor must walk over here and when she finds out that your son has Autism that she feels the need to offer you pity (I don't want your pity) and then when asking what you are going to do when it's time for school..... I say he's going to the public school, has the audacity to look at me and ask: "What you are going to Mainline him?" WTH??? Seriously? I mean this is the kind of thing that I want my child to have to put up with? Yes I am sending him to school with his sister, he's smart, he talks, he knows things....why in the world would I not send him to school?
If this is the kind of thing that I have to deal with from people then what will it be like for him when he does go to school or gets older? How will people treat him? If I can't get "so called friends" to help or be there for me, him, us then who will be willing to be there for him in his life?
There is serious need for education on Autism, Autism Spectrum and what it is, what it does and how children are different, not retarded...not incapable....not handicapped.....just DIFFERENT!
Off the soapbox now and off to horse therapy!
Wednesday, May 26, 2010
His Biggest Advocate
There is a lot to be said for the relationship between siblings, even more so the relationship between multiples. Thomas' twin sister is his biggest advocate. I don't think we always give her enough credit for the amount that she understands. I've worried about how this is affecting her, I think it will be most detrimental to her. Even though she is the "youngest" I think she may always feel the need to be the protector or the guardian in some way. When we can't understand what Thomas is saying you can fully rely on her to tell you. If he's upset, you can ask her why. If he hurts her in some way, you can give her a moment and then she will simply say "it's ok..." He has often locked her in her room because he's mad at her or thrown all of her stuffed animals on the floor. She may try to help him in some way but he doesn't want the help and this frustrates him. However, she remains steadfast his biggest advocate. She continues to stand by his side, she continues to help him, she continues to understand what he says and feels and she keeps saying "it's ok..." I think a lot about the future and what his future will be like. I also think about my other two children and their futures, but not in the same aspect. We really want Sissy to have her own personality and to be able to learn to play and grow in her own personality. However when thinking of Thomas and his sister I often have to wonder how all of this will impact her life as she gets older. I can only hope that when they are both my age she is still sitting with him somewhere eating lunch telling him "it's ok..."
Tuesday, May 25, 2010
Baby you don't know what it's like....
Many times my friends or my family members have said to me or to my husband "you know I just don't know what this is like". Oh how true that statement can be. There is no way for us to show them what Autism is like.... or when asked "well what is it like?" What do you mean? I don't know what to tell you. I can explain to you what a typical day here is like, but every single person is different and unique in their own way, especially when it comes to Autism.
A typical day in our home would start with Thomas getting up somewhere around 6-6:30 in the morning. He immediately needs a diaper change (yes 4 years old and still in a diaper at night) you wouldn't want to change the sheets either! : ) He then has to tell David about a million things followed by breakfast....which is usually the same thing, Cinnamon Toast Crunch and a Yoohoo. YUCK! Now sometimes he differs, sometimes he just wants cinnamon toast, yes I see you laughing, I'm laughing too or I'd be crying. Every so often I bake a butterbraid and we eat that, although it takes him much longer to eat that. Morning routine is pretty much the same every day, watch some cartoons, get dressed and play. This also depends on what we have scheduled for the day. For instance, is there preschool? errands? appointments? etc...
Lunchtime, oh lunchtime... well they love chicken nuggets and fries. I mean what child doesn't, right? I just can't supply that every day. He will tolerate a PB and J, by tolerate I mean if I ask him first and he knows that is what he is getting then he will take a few bites and drink a Yoohoo and that's it. He'll ask for a snack later. He does like grilled cheese and macaroni and cheese. Wow, seems there is a theme here. If you haven't noticed, all he drinks is Yoohoo and occasionally water.
The afternoon, after their brother is home from school then they have "rest time" and I use the term loosely. The only one resting is me and sometimes their older brother. It usually results in a little play time in their own room with a movie! I'll take what I can get. I see you Mom's nodding your heads. Dinnertime I will cook something, whatever I can find or have taken out. I would say 50% of the time he will sit and eat it and the other 50% of the time we have to coax him in some way. He is very visual , so pictures work very well. We may draw it on the whiteboard in our kitchen and try to get him to just take a few bites. By the way, he is at a perfect height and weight, so he does eat during the day, just snacks that he picks and wants to eat.
During other times of the day he can have tantrums, sometimes they last a few minutes, sometimes hours. He does hit and throw. He is a screamer, he does stim (you can look that up), they change, he has done visual stimming, spinning, jumping, rocking, head banging, etc. Never once (praise God) has he hurt himself. I think he will always do the stimming, it will just change as he changes. He scripts (you can look that up too) which is basically where he repeats things, for instance a play our oldest son was in. Thomas knows the entire play verbatim. Sometimes he is content to just play by himself and he will say leave me alone, he will say don't look at me, go away. Other times he wants you right there in his room playing trains, reading books and doing whatever is on his mind right then.
He is incredibly smart and intelligent and looking back and a blog I wrote last year where I described my children I should have known then. I described him as a child who plays alone but knows things and speaks in long sentences. I talked about his fascination for cars, trucks and trains. I just wish I had known. He's fascinating, tiring, loving and just incredible!
A typical day in our home would start with Thomas getting up somewhere around 6-6:30 in the morning. He immediately needs a diaper change (yes 4 years old and still in a diaper at night) you wouldn't want to change the sheets either! : ) He then has to tell David about a million things followed by breakfast....which is usually the same thing, Cinnamon Toast Crunch and a Yoohoo. YUCK! Now sometimes he differs, sometimes he just wants cinnamon toast, yes I see you laughing, I'm laughing too or I'd be crying. Every so often I bake a butterbraid and we eat that, although it takes him much longer to eat that. Morning routine is pretty much the same every day, watch some cartoons, get dressed and play. This also depends on what we have scheduled for the day. For instance, is there preschool? errands? appointments? etc...
Lunchtime, oh lunchtime... well they love chicken nuggets and fries. I mean what child doesn't, right? I just can't supply that every day. He will tolerate a PB and J, by tolerate I mean if I ask him first and he knows that is what he is getting then he will take a few bites and drink a Yoohoo and that's it. He'll ask for a snack later. He does like grilled cheese and macaroni and cheese. Wow, seems there is a theme here. If you haven't noticed, all he drinks is Yoohoo and occasionally water.
The afternoon, after their brother is home from school then they have "rest time" and I use the term loosely. The only one resting is me and sometimes their older brother. It usually results in a little play time in their own room with a movie! I'll take what I can get. I see you Mom's nodding your heads. Dinnertime I will cook something, whatever I can find or have taken out. I would say 50% of the time he will sit and eat it and the other 50% of the time we have to coax him in some way. He is very visual , so pictures work very well. We may draw it on the whiteboard in our kitchen and try to get him to just take a few bites. By the way, he is at a perfect height and weight, so he does eat during the day, just snacks that he picks and wants to eat.
During other times of the day he can have tantrums, sometimes they last a few minutes, sometimes hours. He does hit and throw. He is a screamer, he does stim (you can look that up), they change, he has done visual stimming, spinning, jumping, rocking, head banging, etc. Never once (praise God) has he hurt himself. I think he will always do the stimming, it will just change as he changes. He scripts (you can look that up too) which is basically where he repeats things, for instance a play our oldest son was in. Thomas knows the entire play verbatim. Sometimes he is content to just play by himself and he will say leave me alone, he will say don't look at me, go away. Other times he wants you right there in his room playing trains, reading books and doing whatever is on his mind right then.
He is incredibly smart and intelligent and looking back and a blog I wrote last year where I described my children I should have known then. I described him as a child who plays alone but knows things and speaks in long sentences. I talked about his fascination for cars, trucks and trains. I just wish I had known. He's fascinating, tiring, loving and just incredible!
Monday, May 24, 2010
The Diagnosis....Thomas
So we've switched gears here and moved from focusing on myself to focusing solely on my now 4 year old son, Thomas. Before I used no names, but want you to really get a feel for who he is. He is one of my twins (the boy in the set) and from the get go, the sicker of the two. Thomas was diagnosed with Autism Spectrum Disorder on March 30. His diagnosis is Aspergers Syndrome. You will find that now I will probably (try) to blog every day because I have a lot to say about Autism. I am on Facebook, but there you can't always express how things are going or what you are feeling. Raising an autistic son is not easy. It's demanding, time consuming and literally sucks the life out of me. He needs me for just about everything right now and I say right now because my main goal is to help him to be able to function normally (whatever that may be) and do the best he can for himself.
Right now in the world Autism affects 1 in every 91 children. That is an astonishing number and it's growing. It affects more boys than girls. For us, I believe that it is genetic.....I'll leave it at that for now. I believe in the theory of developmental instead of behavioral when it comes to Autism. I think that the brain has not developed properly instead of the fact that his behaviors are dictating what is going on.
His twin sister is his biggest advocate. She loves him, even when he hits her. She takes up for him. She speaks for him. She goes and finds him when he leaves the room. She loves him unconditionally...... if we all could be like that.
My oldest son is doing the best that he can. He is learning to cope with having a brother who often must get down from the dinner table to jump up and down or spin in circles. He often doesn't quite get why Thomas must flap in public, or scream out loud, but he's trying to. He loves him and he wants to work with him.
Autism is neurobiological and until just recently was a very rare thing that you just never heard about it. My goal is awareness, my goal is to help Thomas succeed, my goal is to help others see the world a lot like his twin sister sees him.....loving unconditionally!
Right now in the world Autism affects 1 in every 91 children. That is an astonishing number and it's growing. It affects more boys than girls. For us, I believe that it is genetic.....I'll leave it at that for now. I believe in the theory of developmental instead of behavioral when it comes to Autism. I think that the brain has not developed properly instead of the fact that his behaviors are dictating what is going on.
His twin sister is his biggest advocate. She loves him, even when he hits her. She takes up for him. She speaks for him. She goes and finds him when he leaves the room. She loves him unconditionally...... if we all could be like that.
My oldest son is doing the best that he can. He is learning to cope with having a brother who often must get down from the dinner table to jump up and down or spin in circles. He often doesn't quite get why Thomas must flap in public, or scream out loud, but he's trying to. He loves him and he wants to work with him.
Autism is neurobiological and until just recently was a very rare thing that you just never heard about it. My goal is awareness, my goal is to help Thomas succeed, my goal is to help others see the world a lot like his twin sister sees him.....loving unconditionally!
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