I've come to realize that there are a LOT of people in this world (sadly) who know nothing about Autism or what it is. While it may not be my job to educate them on what it is, it's my job to love and protect Thomas and do the best I can for him. If that means educating a few people along the way....then so be it! So I thought I'd write a few series of blogs, maybe one a day or a few a day depending on time starting from the beginning. Everything is based on my belief and what holds true for Thomas and what we have seen. Granted his situation is different having a twin, all Autistic children are different and he is unique within himself. So I'll start with the day he was born:
January 30, 2006: This was 5 weeks before their due date and they were scheduled for a c-section on Valentines Day. I however woke up that morning with a numb face, some slight drooling, bad headache and it wasn't getting any better. We arrived at Pitt Memorial Hospital about 35-40 minutes away from my home to meet my Dr who was going to just check me out. Of course, my BP was slightly elevated so I had to stay. When the labs were redrawn apparently I was in some trouble and so it was go time. At 10:32 and 10:34 PM Thomas and his twin sister were born. Thomas was first, but he was taken away without either of us seeing him. They bagged him immediately and took him to the NICU where he stayed for 22 days. In the NICU he was stuck numerous times with IV's where he got fluids and antibiotics. He had IV's in his hands, feet and even in his little head. He weighed all of 5lbs (large for twins) but he was so sick even from day one.
We brought his twin sister home on Valentines Day. Not long after I got her home the NICU called to tell me that Thomas had spiked a fever and no one knew why. They informed me that they needed my consent to do a spinal tap. I asked if I should come back to the hospital (45 minutes away). They told me they wouldn't allow me in the room with him and that the Doctor would call after it was performed. I sat and cried for probably a good hour, part of me felt guilty that we had brought his sister all the way home. If we had just waited a little longer I would have at least still been at the hospital with him when this was done. He had a Staph infection from changing the IV's and drawing blood so many times. When he finally got to come home Thomas had just come off of room air, but was breathing well on his own.
This was just the beginning of his story and there is much, much more. Many people believe that vaccinations have a lot to do with Autism. I for one don't believe that because I had both Thomas and his sister vaccinated at the same time, sometimes at the very same time and she is perfectly healthy. Neither she nor Thomas ever had a side effect from vaccinations. Instead I believe that it is genetic and that he also had such a difficult delivery, lost a lot of oxygen and struggled those first few days. I think that all of those things played a big role in who he is today. Would I have changed a thing about going to the hospital knowing what I know now? I don't know, I can't say. Thomas is who he is, I wouldn't change that or him. If keeping all of the bad things away meant going back and risking my own health and life, then I'd go back. But we hope for the best and often prepare for the worst. This is just the beginning and the best is yet to come!
Sunday, May 1, 2011
Tuesday, April 19, 2011
All about Thomas
I think I've decided that from here on out all blogs will just be about Thomas and the journey we are on. Can I get an AMEN!
So I went and deleted some older ones, left some really old ones that had some previous meaning for me, but from here on out, it's all about him, I love you T, this is for you!
Love
MOM
So I went and deleted some older ones, left some really old ones that had some previous meaning for me, but from here on out, it's all about him, I love you T, this is for you!
Love
MOM
What's Right For Him?
Well it's been a week already and it's only Tuesday! Do you ever have weeks like those. I'm going to say that this week actually started on Saturday because we had a destructive tornado rip through our town. It flipped cars, trucks, tractor trailers. It tore down buildings and picked up one and threw it 40 yards away. It snapped trees, uprooted others and tore down the power lines. It went up the street that runs parallel to my road and was pretty much a block away. I was in South Carolina when this happen, while my family was here, needless to say my heart stopped as soon as I found out. So now there are many efforts being made to clean up the tragic mess.
This Friday I have to take Thomas to Duke, this is an appointment we have known about for months but I've dreaded the entire time. He has a mole on his ring finger that has changed in color, size and shape. His regular doctor here has shown some concern in the way it looks telling me that it could possibly be something that could turn into Melanoma and should be checked by this Dr at Duke. This poor kid has suffered with something since the day he was born and I fear for him that there is a pattern forming. I just want him to be ok, of course and want what is best for him. For anyone that does keep up with this, I'll do my best to let you know what the outcome is of his hand after Friday.
We met last week with the Case Manager who was great, very nice and Thomas talked a tiny bit to her before completely shutting down. She signed him up for the CAP program and we will go before the Beacon Center in about a month or so to present his case. All of this I knew, but it just seemed different when doing it and filling out the questionnaire on my own son. I had to answer some questions that I really did have to think about and she really did have to tell me that I had to separate my heart from it. For instance is there the possibility of him ever being institutionalized (it was worded slightly different)... Well yes if he doesn't receive any services at all from anywhere or we aren't able to pay for anything for him, then yes the possibility is there. The only reason I can say that is because Thomas can become violent with tantrums, throwing, hitting, etc. Then there is a safety issue not only for him but for his brother and his twin sister. I'm not worried about my husband or myself, but I do have to think about my other two children as well as Thomas. What's right for all of them? What's right for him?? I want him here with us, ALWAYS! I told her I didn't think I could ever, ever put him anywhere. It would have to be the most extreme of circumstances, but I knew what she meant by separating my heart from it. If he never gets any services, things would be bad, it would only get worse and then that question could be very real. It made me so sad to think about.
What's right for Thomas? Are we living in the best place for him? I don't know, it seems to me that he gets judged a lot here. It's probably like that everywhere. I'm not sure that the services are the best here, then again they may be like this everywhere. Neither my husband or myself make enough money to be able to pay for all of the things that he NEEDS and I do mean truly needs to help him. He needs sensory items at home, he needs therapy and we've already seen insurance deny that once. We would love to see him get an Autism Assistance Dog. All of these things costing thousands of dollars. How do people do it, especially with multiple children?? I wonder if public school is the best option for him next year, I worry about him. Who will look out for him while I'm not there? They don't know him yet, so they don't know little quirks, tics, etc. Is it easier to keep him at home and homeschool him? Don't get me wrong, I'm not saying these are necessarily things I'm going to do, just things that daily go through my mind depending on what kind of "thomas" day we are having.
So how do I know what's right for him, I do the best I can. I pray often. I ask God for guidance, for good days, for the right people in our path to help us find out what is available. I'm hoping we are living in the right community for him, I hope that I do enough in the community to help educate and make people aware of Autism so that when he is out in the community people will know who he is and they won't look at him differently but instead truly see him. I hope that my husband and I can somehow pull together to do enough for him where insurance and other resources don't kick in that he gets what he needs. Most of all I hope all three of my kids are happy, because I know none of this is easy and all we can do is take it a day at the time and do the best we can.
Thomas is who he is and we love him for every ounce of that person! I wouldn't change a thing about him, about how our life has been. It is very stressful and I do still feel like crying at times, but I wouldn't trade him for anything else in this world, he has blessed me more than he will ever know.
This Friday I have to take Thomas to Duke, this is an appointment we have known about for months but I've dreaded the entire time. He has a mole on his ring finger that has changed in color, size and shape. His regular doctor here has shown some concern in the way it looks telling me that it could possibly be something that could turn into Melanoma and should be checked by this Dr at Duke. This poor kid has suffered with something since the day he was born and I fear for him that there is a pattern forming. I just want him to be ok, of course and want what is best for him. For anyone that does keep up with this, I'll do my best to let you know what the outcome is of his hand after Friday.
We met last week with the Case Manager who was great, very nice and Thomas talked a tiny bit to her before completely shutting down. She signed him up for the CAP program and we will go before the Beacon Center in about a month or so to present his case. All of this I knew, but it just seemed different when doing it and filling out the questionnaire on my own son. I had to answer some questions that I really did have to think about and she really did have to tell me that I had to separate my heart from it. For instance is there the possibility of him ever being institutionalized (it was worded slightly different)... Well yes if he doesn't receive any services at all from anywhere or we aren't able to pay for anything for him, then yes the possibility is there. The only reason I can say that is because Thomas can become violent with tantrums, throwing, hitting, etc. Then there is a safety issue not only for him but for his brother and his twin sister. I'm not worried about my husband or myself, but I do have to think about my other two children as well as Thomas. What's right for all of them? What's right for him?? I want him here with us, ALWAYS! I told her I didn't think I could ever, ever put him anywhere. It would have to be the most extreme of circumstances, but I knew what she meant by separating my heart from it. If he never gets any services, things would be bad, it would only get worse and then that question could be very real. It made me so sad to think about.
What's right for Thomas? Are we living in the best place for him? I don't know, it seems to me that he gets judged a lot here. It's probably like that everywhere. I'm not sure that the services are the best here, then again they may be like this everywhere. Neither my husband or myself make enough money to be able to pay for all of the things that he NEEDS and I do mean truly needs to help him. He needs sensory items at home, he needs therapy and we've already seen insurance deny that once. We would love to see him get an Autism Assistance Dog. All of these things costing thousands of dollars. How do people do it, especially with multiple children?? I wonder if public school is the best option for him next year, I worry about him. Who will look out for him while I'm not there? They don't know him yet, so they don't know little quirks, tics, etc. Is it easier to keep him at home and homeschool him? Don't get me wrong, I'm not saying these are necessarily things I'm going to do, just things that daily go through my mind depending on what kind of "thomas" day we are having.
So how do I know what's right for him, I do the best I can. I pray often. I ask God for guidance, for good days, for the right people in our path to help us find out what is available. I'm hoping we are living in the right community for him, I hope that I do enough in the community to help educate and make people aware of Autism so that when he is out in the community people will know who he is and they won't look at him differently but instead truly see him. I hope that my husband and I can somehow pull together to do enough for him where insurance and other resources don't kick in that he gets what he needs. Most of all I hope all three of my kids are happy, because I know none of this is easy and all we can do is take it a day at the time and do the best we can.
Thomas is who he is and we love him for every ounce of that person! I wouldn't change a thing about him, about how our life has been. It is very stressful and I do still feel like crying at times, but I wouldn't trade him for anything else in this world, he has blessed me more than he will ever know.
Thursday, April 7, 2011
Things are going to change
Things with Thomas are about to change. Hopefully everything will be all for good changes and he will be able to handle all of these changes. Anyone who knows anything about Autism and Aspergers knows that it will be difficult for him to accept change, but I'm willing to work with him because I think these changes are going to be good for him and for all of us!
First, he is getting a case manager. This person will be someone who can go with me into the schools when I need her, she can help me to get him services he needs and navigate through the system for things I'm unsure about. She can go to Dr's appointments if I need her to, etc. I am really very excited about having her come in our home and meet Thomas and I so hope that he is receptive to her. I have heard nothing but good things about her and just our first conversation she seemed very nice and very knowledgeable.
We are going to try to get Thomas CAP services. My only concern here is the fact that he is a twin. This is, of course, a unique situation for them because for the last 5 years they have been nearly inseparable. So I fear that this would be a huge change for him to go off with a worker and Emma to always be "out of the loop" so to say, but also I think it will be very good for both of them. It's always hard to know when you are doing the right thing, but of course all of these things are trial and error with him to know what will work best to help him for the long haul!
I am desperately trying to get him SSI which if anyone out there knows anything at all about that, it's a very long process. So far they have put off my appointment 3 times. Wasn't too happy about that, but it is what it is.
I have also started the process of moving his sensory therapy from Raleigh to here in Wilson where we live. This will be much better next year when he starts Kindergarten and hopefully we will not have to pull him out of school during the day. Routine and stability are what he needs and this will be a good change for him.
Finally, for the last 9 months or so we have really wanted to get Thomas an Autism Dog. You can read about them online. The down side is the cost. They are thousands of dollars. The upside is that, just like a seeing eye dog or dog for epilepsy, he can take the dog everywhere he goes. Thomas is a runner and he has meltdowns so the dog would be able to assist him with that, keep him from darting out in traffic or parking lots, etc. The dog could potentially go to school with him as well and I've read stories about that which I find fascinating.
I'm looking for suggestions and help from anyone who has any ideas or has been through any of this already. Most of this is new to us and even though it's been a year already since he was diagnosed, every day is different and we are still learning and on this journey for lifetime! I wouldn't change a thing about my Thomas. I love him just the way he is.
First, he is getting a case manager. This person will be someone who can go with me into the schools when I need her, she can help me to get him services he needs and navigate through the system for things I'm unsure about. She can go to Dr's appointments if I need her to, etc. I am really very excited about having her come in our home and meet Thomas and I so hope that he is receptive to her. I have heard nothing but good things about her and just our first conversation she seemed very nice and very knowledgeable.
We are going to try to get Thomas CAP services. My only concern here is the fact that he is a twin. This is, of course, a unique situation for them because for the last 5 years they have been nearly inseparable. So I fear that this would be a huge change for him to go off with a worker and Emma to always be "out of the loop" so to say, but also I think it will be very good for both of them. It's always hard to know when you are doing the right thing, but of course all of these things are trial and error with him to know what will work best to help him for the long haul!
I am desperately trying to get him SSI which if anyone out there knows anything at all about that, it's a very long process. So far they have put off my appointment 3 times. Wasn't too happy about that, but it is what it is.
I have also started the process of moving his sensory therapy from Raleigh to here in Wilson where we live. This will be much better next year when he starts Kindergarten and hopefully we will not have to pull him out of school during the day. Routine and stability are what he needs and this will be a good change for him.
Finally, for the last 9 months or so we have really wanted to get Thomas an Autism Dog. You can read about them online. The down side is the cost. They are thousands of dollars. The upside is that, just like a seeing eye dog or dog for epilepsy, he can take the dog everywhere he goes. Thomas is a runner and he has meltdowns so the dog would be able to assist him with that, keep him from darting out in traffic or parking lots, etc. The dog could potentially go to school with him as well and I've read stories about that which I find fascinating.
I'm looking for suggestions and help from anyone who has any ideas or has been through any of this already. Most of this is new to us and even though it's been a year already since he was diagnosed, every day is different and we are still learning and on this journey for lifetime! I wouldn't change a thing about my Thomas. I love him just the way he is.
Monday, February 28, 2011
The Vacation From ......
Hello Dolly! This blog is long overdue, but with some very chaotic moments happening in our lives recently it has taken me a while to be able to sit down and write it. Anyone who knows me knows that I volunteer with scouts (cubs and girls), devote time to Autism and the Autism Society, work two part time jobs, then of course there is my family and children so there is homework extra activities, doctors visits.... the list goes on and it doesn't end. Someone mentioned something to me the other day that I had forgotten and I really hadn't forgotten but it is on my list of "to do" and just hasn't been checked off yet. Sadly some of the things that I do work or volunteer in have gone south and will have to be delegated elsewhere... but that's another blog and another day or maybe not at all.
Now, my trip that was supposed to be a great vacation and birthday extravaganza for our kids all rolled into one. If you know my husband (lucky you!) you also know that getting him to take time off of work is like pulling teeth. So this was an accomplishment on my part. I had also gotten all of the outside activities, my own job and his to all line up for the exact same week so we could be gone. I was thrilled, excited and we were all more than ready to be gone for a week. We really needed this!!
We left on a Friday afternoon and drove half way. This was better for Thomas since the drive was so long. The first night was not so bad. My daughter had started coughing a bit, but we thought perhaps it was the change in the weather and it was raining quite a bit. By Saturday she was coughing more and it was raining and dreary. I was giving her things like Sudafed and Motrin and hoping that it was just the change in the weather, I should mention that when we got to Florida the ground there was covered in pollen. We were all quite shocked! By Sunday evening she was running a fever and to our knowledge there was no immediate care close by. Lucky for me, a doctor here called her in some medicine on Monday and we were able to get her an antibiotic and cough syrup at the CVS in Florida for a sinus infection. In about 24 hours she was much better and her fever was gone! Little did I know that by Monday afternoon my husband would be down though.....
Monday afternoon we were eating at a restaurant and my husband who had been feeling "funny" all day was feeling worse. We thought perhaps he had a stomach virus. He went back to the room and was sick the rest of the day. That evening the children and I (me of course an emotional wreck) went to the front desk of our hotel and asked for a separate room so the rest of us would not get sick. By this time I'm fighting back the tears and I think they felt sorry for me. Luckily they were able to give us another room in the same building on the bottom floor. We walked the long walk to our building (30 some buildings) and got in our new room. I went up to where my husband was to get our bags and clothes, medicine for Thomas, etc. When I picked up the bag for Thomas his medicine fell out and busted all over the concrete. I immediately began to cry, there was nothing else I could do. I took several trips and got everything in our room, got everyone bathed and in the bed.
The next day we went out, just the 4 of us because my husband was still sick. We went to breakfast and I went and got Thomas his new medicine that I broke. I took the kids out by myself and we did the very best that we could! Every part of my body hurt, we encountered some very rude people when it came to Thomas' guest assistance pass or when he would tantrum in the middle of a park. I found myself in tears on a ride a few times, especially if it was a ride that was dark so the kids wouldn't see.... I tried very hard for the stress I was feeling to not be put on them. I wanted them to have a good time no matter what. I should mention that on this day.... I dropped my Blackberry on the concrete... yes it still worked!
On Wednesday night my husband finally was able to go to the onside immediate care that the front desk was able to tell me about. The verdict there was that he most likely had food poisoning. He was miserable, I was miserable, the kids as far as I could tell were still enjoying themselves! I was really trying!! My oldest son had some disappointments, some things I just couldn't do by myself with all 3 of them. I felt terrible for him. It's difficult to be the older sibling of an Autistic brother, and even harder when often that means that you have to give something up. I'm hoping that soon we can make that up to him!
Late Wednesday afternoon my husband was able to rejoin us as he was finally feeling better. I was finally able to breathe again and we were all able to sleep that night. My husband slept in the other room one more night just to be sure. Thursday morning he came out with us and the day went fairly well, until Thomas went into a full blown asthma attack that day and all we had were his inhalers and no nebulizer.
Friday was our LAST day there and it went pretty much like this, Thomas had on and off asthma attacks all day everywhere we went. I dropped my blackberry on the concrete again. The kids had a blast because they got to fight Darth Vader, which was finally something they had REALLY wanted to do. I cried a river.
Saturday we packed up to go home and my husband fell off the back of the car! By now I knew that Disney was NOT the most magical place on earth and certainly not the place for us to be anymore. I gladly checked out and told my husband to hit the road and make it a days drive, we were getting home in ONE day!!
If anyone has ever questioned the fact that I'm a strong person or determined this should be enough to prove that I am. Give me a situation and I don't back down, but push through. Just like with Thomas and his Autism, just like with the medical obstacles thrown at me, just like the many other situations I've been faced with... I don't back down but P.U.S.H, pray until something happens!
Now, my trip that was supposed to be a great vacation and birthday extravaganza for our kids all rolled into one. If you know my husband (lucky you!) you also know that getting him to take time off of work is like pulling teeth. So this was an accomplishment on my part. I had also gotten all of the outside activities, my own job and his to all line up for the exact same week so we could be gone. I was thrilled, excited and we were all more than ready to be gone for a week. We really needed this!!
We left on a Friday afternoon and drove half way. This was better for Thomas since the drive was so long. The first night was not so bad. My daughter had started coughing a bit, but we thought perhaps it was the change in the weather and it was raining quite a bit. By Saturday she was coughing more and it was raining and dreary. I was giving her things like Sudafed and Motrin and hoping that it was just the change in the weather, I should mention that when we got to Florida the ground there was covered in pollen. We were all quite shocked! By Sunday evening she was running a fever and to our knowledge there was no immediate care close by. Lucky for me, a doctor here called her in some medicine on Monday and we were able to get her an antibiotic and cough syrup at the CVS in Florida for a sinus infection. In about 24 hours she was much better and her fever was gone! Little did I know that by Monday afternoon my husband would be down though.....
Monday afternoon we were eating at a restaurant and my husband who had been feeling "funny" all day was feeling worse. We thought perhaps he had a stomach virus. He went back to the room and was sick the rest of the day. That evening the children and I (me of course an emotional wreck) went to the front desk of our hotel and asked for a separate room so the rest of us would not get sick. By this time I'm fighting back the tears and I think they felt sorry for me. Luckily they were able to give us another room in the same building on the bottom floor. We walked the long walk to our building (30 some buildings) and got in our new room. I went up to where my husband was to get our bags and clothes, medicine for Thomas, etc. When I picked up the bag for Thomas his medicine fell out and busted all over the concrete. I immediately began to cry, there was nothing else I could do. I took several trips and got everything in our room, got everyone bathed and in the bed.
The next day we went out, just the 4 of us because my husband was still sick. We went to breakfast and I went and got Thomas his new medicine that I broke. I took the kids out by myself and we did the very best that we could! Every part of my body hurt, we encountered some very rude people when it came to Thomas' guest assistance pass or when he would tantrum in the middle of a park. I found myself in tears on a ride a few times, especially if it was a ride that was dark so the kids wouldn't see.... I tried very hard for the stress I was feeling to not be put on them. I wanted them to have a good time no matter what. I should mention that on this day.... I dropped my Blackberry on the concrete... yes it still worked!
On Wednesday night my husband finally was able to go to the onside immediate care that the front desk was able to tell me about. The verdict there was that he most likely had food poisoning. He was miserable, I was miserable, the kids as far as I could tell were still enjoying themselves! I was really trying!! My oldest son had some disappointments, some things I just couldn't do by myself with all 3 of them. I felt terrible for him. It's difficult to be the older sibling of an Autistic brother, and even harder when often that means that you have to give something up. I'm hoping that soon we can make that up to him!
Late Wednesday afternoon my husband was able to rejoin us as he was finally feeling better. I was finally able to breathe again and we were all able to sleep that night. My husband slept in the other room one more night just to be sure. Thursday morning he came out with us and the day went fairly well, until Thomas went into a full blown asthma attack that day and all we had were his inhalers and no nebulizer.
Friday was our LAST day there and it went pretty much like this, Thomas had on and off asthma attacks all day everywhere we went. I dropped my blackberry on the concrete again. The kids had a blast because they got to fight Darth Vader, which was finally something they had REALLY wanted to do. I cried a river.
Saturday we packed up to go home and my husband fell off the back of the car! By now I knew that Disney was NOT the most magical place on earth and certainly not the place for us to be anymore. I gladly checked out and told my husband to hit the road and make it a days drive, we were getting home in ONE day!!
If anyone has ever questioned the fact that I'm a strong person or determined this should be enough to prove that I am. Give me a situation and I don't back down, but push through. Just like with Thomas and his Autism, just like with the medical obstacles thrown at me, just like the many other situations I've been faced with... I don't back down but P.U.S.H, pray until something happens!
Tuesday, January 4, 2011
New Year...New Trials...
What made me think that a new year would mean that anything would be any different? I suppose I thought that starting off 2011 would mean a fresh start for our household. Perhaps we would put 2010 behind us and get a new perspective. Wrong!!!!
Just before the New Year Thomas had his first Dr's appointment with his new family doctor. We discussed his Aspergers, Asthma and Respiratory condition. All of which she seemed very comfortable with and with treating. We scheduled an appointment for this month to get his hearing rechecked to make sure that he doesn't have any hearing loss. I know there is a possibility that he does and I'm prepared to deal with that. If that's one thing we are looking at then it is probably minor and he can certainly live with it. I just hate to keep adding to the mounds of issues that seem to pile up for this (almost) 5 year old child.
Then as she was doing his physical exam she noticed the mole that has always been on his right ring finger. She asked about it and I explained that it's been there since birth. She asked me about the size and shape as well as the color. I told her that I hadn't really taken much notice because like I said it was part of him and something that had just always been there. She suggested that we go to Duke to see a Pediatric Dermatologist to check out the mole. The mole is rather dark and asymmetrical. It has also gotten much larger, the edges are jagged. She said to me that there is the possibility of it later turning into Melanoma and should be taken care of immediately. I'm not sure I really had a response for her other than "OK". The first available appointment at Duke is in April. We've had one cancer scare already in the last several months and I'm not prepared to have one with my 5 year old. I'm not sure how to take it that he could possibly have something like this on his hand so I'm trying to just not think about it. However....as any parent would know that's nearly next to impossible to do.
So this is how the New Year has started here and I'm just trying to remember that everything happens for a reason. I'm not meant to know what the reason is, but to just follow the plan
Just before the New Year Thomas had his first Dr's appointment with his new family doctor. We discussed his Aspergers, Asthma and Respiratory condition. All of which she seemed very comfortable with and with treating. We scheduled an appointment for this month to get his hearing rechecked to make sure that he doesn't have any hearing loss. I know there is a possibility that he does and I'm prepared to deal with that. If that's one thing we are looking at then it is probably minor and he can certainly live with it. I just hate to keep adding to the mounds of issues that seem to pile up for this (almost) 5 year old child.
Then as she was doing his physical exam she noticed the mole that has always been on his right ring finger. She asked about it and I explained that it's been there since birth. She asked me about the size and shape as well as the color. I told her that I hadn't really taken much notice because like I said it was part of him and something that had just always been there. She suggested that we go to Duke to see a Pediatric Dermatologist to check out the mole. The mole is rather dark and asymmetrical. It has also gotten much larger, the edges are jagged. She said to me that there is the possibility of it later turning into Melanoma and should be taken care of immediately. I'm not sure I really had a response for her other than "OK". The first available appointment at Duke is in April. We've had one cancer scare already in the last several months and I'm not prepared to have one with my 5 year old. I'm not sure how to take it that he could possibly have something like this on his hand so I'm trying to just not think about it. However....as any parent would know that's nearly next to impossible to do.
So this is how the New Year has started here and I'm just trying to remember that everything happens for a reason. I'm not meant to know what the reason is, but to just follow the plan
Tuesday, November 30, 2010
Friendship is Love
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.
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.
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
Subscribe to:
Posts (Atom)