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 
   

Valid Fears

My entire world changed on March 30. I know that other parents of special needs children, children with disabilities, parents who have lost children, children born prematurely will all say that they feel the same way. All three of my children were preemies and all three were in the NICU. I know what it is to have fears and concerns when it comes to your children. I think that if they are your fears then they are valid, no one can push them aside and say "that's silly". Just like an opinion, everyone is entitled.

Thomas has outbursts. He's autistic and I don't think that I have read about or encountered many autistic children that at some point have not had an outburst of some kind. Lately he is very taken with his older brother and wants to do everything that he does. This is ok for the most part, but his brother needs some time too. I've said before that I really think my other two children need an outlet, friends. Yesterday we went to the pool. Thomas loves the pool and he enjoys the water. Luckily in the morning there was a friend for Thomas and his brother. This worked out great and Thomas left his older brother alone so that he could have some time to himself. I got along great with only a minor meltdown in the beginning. I decided that the pool was going so great the last couple of weeks, we'd go back yesterday evening. Only this time there was someone for Thomas' brother and sister but not for Thomas. This happens, right? Of course it does! Only problem is that Thomas doesn't understand, receptive language is low for him. Explaining to him why his brother needs a moment or can't play with him right now causes a meltdown. He doesn't get it. He began thrashing in the pool and screaming with about 15-20 other people looking on. We attempted to calm, many times over. We took him out of the pool, my husband swam with him, the end result was more screaming and us leaving.

My fears are.... well there are many. I fear that someone will see this and call the police, lucky for me I know them all. I fear they will think we hurt him when in reality, it's just how every day life is. I work with him to help him understand but if I could show you his IQ score you would see that he is extremely intelligent until you get to his receptive language. I fear that other people will not want to associate with him, with his siblings and eventually with us. Silly.....yes, but my valid fear. Have you ever heard someone say "oh my daughter has an autistic child in her class or a handicapped kid in her class, etc" ?  Now don't get me wrong because there is nothing wrong with this, but I have to say that I wonder if the mother's from last year have said that.....and Thomas is "that kid".

Maybe I'm not saying everything the way that I'm feeling it, it's harder when you try to write it. I don't care what others think, I'm past that point. However, yesterday what was so gut wrenching was the look on people's faces as I tried with all my might to help him and even I as his mother can't do anything. I have to watch him violently thrash in the pool and scream. No, I didn't care what they thought, not about me anyway... the thought running through my mind was what will happen when he's older, what happens to him one day when I'm not there, will people just turn and stare at him. My fear is any negative things they may think of him.

A dear friend told me yesterday to write my thoughts down, the good and the bad, and then I can see how things lie. She said that this will certainly help me to focus on the good and to also see where Thomas is having the most trouble and hopefully be able to pinpoint some triggers. I think she is smart! I also hope that by writing here I'm helping someone, I'm educating someone who doesn't know what Autism is or that I'm just helping myself by putting out there what's on my mind. The Team Thomas fundraisers are not only about raising funds for the Autism Society, but about raising awareness this summer. Sometimes it's not all about us, it's about the journey we are on.

Share the Experience

This blog I've thought a lot about writing, mostly because it's a two part thing. I'll start with the first part and hope that I can make the two sort of flow together.... I'm not always very good at that. In fact I think that this is rather sad. I've always written that I often had ideas about how I pictured Thomas being when he was first born. I think all mother's do. When you first see them you think all these wonderful thoughts about how they will grow up to be, sort of a flashforward of sorts. We all like to share those moments with family, friends and loved ones. All of your most exciting moments in life, tragedy, birthdays, huge events, etc are all shared with someone. Of course when you are married you share those all with your spouse. Most people have a best friend to share those moments with as well. Growing up I had a best friend. We did everything together, went everywhere and literally shared all of life's ups and downs together. Now as an adult I don't have that anymore. Yes my husband is my best friend, but a best "girl" friend is much different. There is no one to share these moments with, no one to call when I'm having a bad day, no one to go to the movies with, no one to have a cup of coffee with, go for a walk with, no one to pick me up when I'm down or the biggest thing.....for me to help them!

When you have twins they often share a lot. They are together all the time and they just know how to fix things for each other. My daughter does that for Thomas. She has always been there for him and she knows how to solve the problems. However, she has no girlfriends. She doesn't get invited to play dates, she doesn't have a best friend, no one comes over to play with her, etc. I feel bad for her because I remember how wonderful it was to have someone in my life. I hope that by splitting them apart next year and getting Thomas the help he needs, she will be able to form friendships and possibly even find a best friend! Maybe Mom will too....

As for getting Thomas everything he needs, I'm really feeling the need to go to work. I'm feeling very drawn between leaving them but helping to supply our family with certain things. I won't go into great detail here but it's very sad for me and very hard to think that I can't do everything for Thomas that he needs or that we constantly have to ask for help. I really wish that I could find something during the time they are going to be in school and then I can still devote myself to being with him when he's home. It's very difficult to try to "teach" someone else how to deal daily with everything. Not to mention there are still Dr's appointments and therapies, etc. I could work at night but I guess sleep is important. I've thought for years that getting this certain certification was going to solve everything but I now know that it isn't going to fix anything, there isn't going to be anything for me to do.

I'll end all this by saying that I don't know who reads this, I think someone must! Thank you if you do and for today just be there for someone and share their experience, joys, happiness, sadness and most of all love!

Prayer

I think that in life it's all we have sometimes. One Sunday morning our preacher did his sermon and told about how we pray when we are in a jam, pray when we really need something, pray when you want something to go your way, etc. Do you ever truly pray when it's just the right thing to do ?

I have said that for the last year through this struggle that I pray as soon as my feet hit the floor. I have to or I won't make it through the day. I have to pray for Thomas and my other children. I pray for myself and for my own freewill shall we say. I pray for the others around me. I have to pray many times during the day. I often just have to stop and take in a deep breath and call God's name, he knows what I'm doing and then go on. I also pray just before I go to bed. Now I'm not talking about drop to your knees like when I was a kid and kneel beside the bed. I'm talking about taking moments to myself when I can with God.

Recently on Facebook I've been asking for prayer for Thomas. I notice that not so many people respond to that. I'm wondering why that is? Let me go on though about Thomas. We are on his 4th medicine for tantrums, a mood stabilizer that can (a very very low %) have some side effects. He is also on something to help him sleep. I'm feeling anxious and nervous myself, praying and praying that I haven't given him something that is going to harm him in any way. I'm praying that this will help him. I'm praying that none of those terrible things she told me about will happen because....... I'm not sure I could live with myself. I then have to remember that I'm just doing the best that I can and the best that I know for my son as the present time. I'm doing what a Dr, with more education in this area than myself has advised me to do.

So for today I'm praying!

Father's Day!

Happy Father's Day!! I hope if you are a father, have a father or a husband or even someone in your life that is like a father that you will let them know how much you love them today! I'm blessed to have a great husband who works very hard so that we can have what we need. If I haven't nagged hard enough before he works for the Police Department as a CSI.....technical term Forensic Analyst. He does a lot for us though and I'm very grateful! Not to mention that he loves me with all of his heart and I couldn't ask for more than that.

I have a wonderful step father who loves my kids. He comes by nearly every single day. He and my mother live very close (within walking distance) and he does a lot for us too! He has been in my life since I was about 11 or 12. Of course at that age it was much harder to accept him, but I have come to love and respect him as an adult. I even call him Dad on occasion.

My biological father isn't in my life and hasn't been for about 3 years now. This has been very hard for me because I don't understand how you just let one of your children go like that. I look at my children and can't imagine doing that. He knows nothing about Thomas. I have a niece and a nephew that I use to spend all my time with when they were little that I haven't seen in years. I can't even begin to tell you how that kills me. I don't think my nephew even knows me anymore. I have a sister that I haven't heard from and a brother. These are not my mother's children, these are half siblings. They all live within 5 miles or so of me. Yes I could pick up the phone but for many years I did pick up the phone and was the person who often initiated contact even when I felt they didn't want that, I grew up and decided that I needed to see if anyone would contact me. No one has and ...... well all this is to say tell people you love them if you do. I look at my 3 children (just like there are 3 of us) and I just can't imagine how they can't always love each other and want to be together or help each other.

I had a wonderful grandfather who was probably my best friend and like my father. He died 2 years ago. I miss him terribly. Thomas is a lot like him, in many ways. Very smart and always knows exactly what he wants. My grandfather was a brilliant civil engineer who came up from pretty much nothing and graduated top of his class at NC State. He was my hero and on Father's Day I would always call him.

One day my boys may be father's and I hope they know how important that is! I hope they will still let me be a part of their Father's Day and continue to make a fuss over their Father! Enjoy your day!

One Step Forward

We take so many backwards. This is a vicious cycle. I feel like I'm on a roller coaster. That's it, it's like being on one of those hideous rides at the fair that goes sideways, upside down and loops around and you want to get off as soon as it starts but you really can't and you know it. Mind you.... I don't like those rides and don't get on in the first place!

For anyone who knows me, I'm snappy, sarcastic and I don't take stuff from people. I'm a very personable person, don't get me wrong.....but I just lay it out there. I'm very honest and open I guess you'd say. However this experience with my son has humbled me I'd like to think. I'm still sarcastic, yes (I can hear my friends reading this now....) but now my main response to everything is just grow up.

 So back to my point, I'm getting a little off track and when I explain you will know why. The new medicine isn't working either. Today is only day 2 and it has made him sick. We had a Dr' s appointment this morning in Greenville, NC and saw the Social Worker that we've been seeing for months now. I told her what we've been doing and trying. She wasn't happy with the new med they just put him on. I thought GREAT, what am I supposed to do now? So I take him back on Monday morning, bright and early. Mind you I got up late this morning, drove in the pouring rain, but she got to experience what we've been experiencing.....

Thomas is now chatty, no not just chatty, he is talking non stop and stuttering. He then flips and says Don't talk to me, Don't look at me and then the next thing you know he's screaming, yelling or crying. Talk about frustrating. So this morning he had no contact with her at all, but talked constantly to me about everything under the sun. All the way home he talked and talked and talked until he got sick about a mile from home. He hadn't eaten anything at all and took the medicine on an empty stomach.

He's refusing to eat more often than he's eating. He has trouble sleeping and if any of you are on my facebook page.... you know we lost his My My Mommy. This would be his blanket. It's gone and we've torn apart two houses looking for it. It is just pieces of a blanket now that we've knotted together, but none the less it's gone! We've asked him numerous times where he put it, did he throw it somewhere and he has no recollection of where it could be.

I'm exhausted, my husband is tired and he works constantly and is rarely home. I work part time and am working hard to get a certification that I've wanted for years! It's hard to explain this to family and friends and have them truly understand what is going on or what we need help with. Right now I just need support, friends and lots of encouragement because when I step forward I constantly have one foot lingering behind somewhere

Hope......

where would I be without any? I'd be lost and I'd never make it through a day. I have to have some kind of hope, at least a little. I've had to have a lot of hope the last several years. I had to have hope I wouldn't die, hope I'd have more children, hope they would live, hope I wouldn't die again, hope that Thomas would be ok and now hope that each every day, each and every minute we can make it through. That's also Faith! I have a wonderful church family that has been supportive. I'm not sure anyone ever truly understands the depth of what happens here on a daily basis. Even blogging about it can't give you a day to day, play by play. Some have been more supportive than others but I always find myself "feeling alone". I just read an article in a magazine where the woman describes her Autistic son and says that in the beginning she had the hope that she could cure him, teach him all those things he was lacking. One day she just realized, you just have to accept that this is how it is and while he can learn to do things he will never be cured. You just have to have hope that you can teach them all they need to know, that no one is going to take advantage of them and that you are making all of the right decisions.

Last week we found out that Thomas will attend the Autistic preschool next year. This means separating him and his sister. This is a huge deal for me and strikes me right in the center of my heart. Let me back track and start by saying that when they were born I had this image in my mind of how things would go.... don't we all? They would go to school together, play together and be best friends. That image is gone. Many people will say (and have said) well that doesn't mean that won't happen. Now this is true, but what I envisioned is no longer there. Any mother of a special needs child can relate. I have hope though that he will do the very best he can and when in Kindergarten he will blow them away. I have hope that his sister will make friends and finally be invited to play with other children her age. I have hope that she will no longer feel the need to watch out for her brother every single day. I have hope that when they come home, they will be each others best friend.

My mind often goes and therefore I can't remember if I mentioned the battle with sleep and medication. I have discovered that for children with Autism and on the Autism Spectrum this is a constant battle. Thomas is one of those. We are in the sleep battle now, not sleeping very well. At age 4 1/2 he can get up multiple times during the night and walk around the house. We have tried some different medicines that are to help with both the tantrums and the sleep. So far they have not been right for him. We are now trying something else, but I have hope. I have hope that we will find what works. I have hope that he will sleep like a normal child or at least all night very soon. I have hope that we will get his behavior calmed down, maybe not completely under control, but better.

If I've learned nothing else through this entire process thus far, I've learned this: Autism is ever changing, it doesn't magically go away and if I had that magic wand I can't tell you I'd use it. Thomas is who he is and who he should be. People are ignorant, but we have the resources to educate them. When it comes to my son, I have hope!

What It's All About?

Tomorrow is my 10 year anniversary and I've often wondered what is life all about? Not the meaning of life per say but life should be what you make it right? What about when things and obstacles get in the way of those dreams and ambitions you have set for yourself? Can you still keep your eye on the prize?

From the time I was a teenager (and this is because I don't remember much of my life prior to that) I've been very head strong. I always do what I want to do and typically don't let anyone or anything stand in my way. I will find a way to get something done when I want it badly enough. Here's a little background history on myself so you will know a little more about me....

When I was 15 years old I was dating a guy who I thought was ok but I was wrong. About an hour before my softball tryouts he raped me. It took me a very long time to tell anyone and by the time I did, they couldn't find him. I was a teenager who hated high school because I was overweight, not just overweight, but fat. I got picked on a lot. However, I did have a boyfriend from 16 to about 17 1/2. Again someone else I thought was a winner who turned out to be a loser! He beat me frequently, put me down and was just mean. He convinced me to leave home for 9 days and during that time he and his brother tattooed my arms with a sewing needle and ballpoint pin ink and thread. It was the most painful thing I think I've ever been through and as you know I've had three children. They put two things on one arm and one on the other. It wasn't long after that I went home and then left school. There was too much going on. I got my GED and walked the same year my regular graduating class did even though I finished long before they did.

I had already met my soon to be husband and we got married when I was 19. Exactly 10 months later my first son was born. Not long after having him they discovered that I had Endometriosis and would have to take Lupron which nearly killed me. It left me confined to my bed for months. I was determined to have more children but was told it would be nearly impossible. I decided to lose weight and lost about 115 lbs. I met every stubborn doctor along the way too. I finally went back and begged to have more children and was given one try. As most people know.... I had twins! But that wasn't going to be easy either. They were born at 35 weeks because my liver failed and platelet count dropped. Then the babies were in the NICU.

Thomas was in for 22 days and his sister was in for 15 days. When they were about 5 months old I had to have a partial hysterectomy. I should also mention that from 1999 until the present day I've had 10 surgeries. They are all for various things and various reasons and various parts of me. After getting everyone settled I continued on with something I had already started, my Bachelors Degree. I was doing this online! I had started just after I got sick from the Lupron in 2004 and I finished in 2007. I got a BS in Criminal Justice. I desperately wanted to go and walk across the stage, but that wasn't going to happen either....

There are so many other things that have happened in my life and I could keep going on. I guess my point is that life can always be worse and it's all about what you make of it. If you make it bad then chances are it will always be bad. If you keep a positive outlook and remember that sometimes you aren't in charge then good things will happen. I firmly believe that God has a plan for everything and one day I will be there with him and he will let me in on the secret, until then..... Life is good!

Put your walking shoes on

I have to say that I always a struggle with the title of these blogs for the longest time before I actually start writing. I could sit here and write forever, but coming up with a title takes a long time. One day I may just put a bunch of jumbled letters up there. Don't be surprised....well for those of you who know me, I'm just sayin.
Let me start this off by if you are a praying person, please stop for a moment and send one up for all of those 3, 4, and 5th graders taking the EOG's today. My 3rd grader is one of them and while he doesn't know it, I'm nervous for them!

So "put your walking shoes on" means just that. We are walking on October 9 in Raleigh, North Carolina in the Autism Walk. This is going to be a great event, I already know it. We are building a team called Team Thomas. I know, very original. It was my idea if you couldn't tell. We are in the process of having shirts made that will say All Aboard for Autism Awareness. We are going to be fundraising all summer and really hoping to get the community involved and raise awareness for Autism.

The walk is a 5K (3 miles) you can walk or run. You register online at http://www.kintera.org/faf/login/teamPageEdit.asp?ievent=425835&lis=0&kntae425835=E62CE36064844746BE41F240998D542D&page=view
It's $25.00 for the registration fee and they will send you a shirt as well, but like I said we are having our own TEAM shirts made! We would love to have an outstanding number of people there that day. There is also a kids walk.

All of the proceeds that we get from any fundraisers and the registration fees go directly to the Autism Society of North Carolina. Autism now affects 1 in 91 children. That number is falling still. It affects more boys than girls.

I've always said I don't know who reads this, who steps into our world, but if you are I hope you will consider joining us on October 9 and even this summer. Join Team Thomas!