Monday, December 8, 2008
Diagnosis
We have an official diagnosis. Brevan has Aspergers Syndrome. We always knew he was somewhere on the autism spectrum, but somehow in my mind I just figured that if we loved him enough and taught him the skills he lacks, that it would all go away. I'm feeling so conflicted. We spent many hours today at the KC Regional Center, where he was evaluated and I was asked hundreds and hundreds of questions. It all led up to the moment when the nice lady told me that he has Aspergers and qualifies for state aid. Every year we will have $3,200 to spend on medications and therapies that he needs. That should make me excited because I have been overwhelmed just thinking of the what/how/where of these therapies. For years I have known that I needed to do something about his issues, but I have not known what to do. Now that I have some answers, I should feel relieved. Instead I just feel like crying. I'm hurting for my son, and I'm embarressed to admit that I'm hurting for myself. My sweet boy is going to have a tough road ahead of him, and it breaks my heart. The lady who evaluated him today has a son who is 30 and has struggled with Aspergers all his life. I asked her how he has adapted, and she said (with a big smile on her face) "He is finishing up his residency in medical school because he is absolutely brilliant!" And then the smile faded as she said, "But he has been married and divorced 3 times because he doesn't understand how to connect with others and have concern for their feelings." When I dropped off Brevan at school, I talked to the counselor at his elementary, who is very aware of the situation. She has been with him every time he is sent to the principal's office for inappropriate behaviors. She started rattling off words to me like "IEP" and "special-ed resources." I stopped listening after a minute and just stared. I should be grateful that I am being pointed in the right direction, but instead I'm just in tears.
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7 comments:
Ali - I don't know what to say to help the situation but know that you are in my thoughts! Remember the Eltiste-Smith family? Their daughter Allison also has that - they found out. Michelle dove into it head first to find out all she could - if you want I'll give you her information and I'm sure she'd be happy to give you all that she knows about it. Let me know... Love you Ali! (D&C 98:3)
I have a book that might be good to read. You know I am here for you. I've been through it....twice even...FUN! haha! Honey, I love you. I adore your sweet family! And you know I confessed to you my utter love of your sweet boy back when I was his Primary President (not sure if you remembered that or not.) Brevan is so incredibly unique and special. Yes, the road will be hard for him in some aspects and easy in others. He couldn't ask for more dedicated parents! I can tell you that! I'm here...an ear, a shoulder, anything...
Big hugs to you and your sweet boy! I'll have to call you tomorrow. =)
I am sad to hear that you have been in tears today. We went through this 3 1/2 years ago when my son was diagnosed with High Functioning Autism Spectrum Disorder (basically the same as Asperger's, except that he developed his speech after three and Asperger's usually develop speech before 3). I remember being in tears so many times before his diagnosis because I just didn't know what was wrong with him and I didn't know how to help him. Ever since his diagnosis, I cannot tell you how much better things have gotten!!! There are so many resources out there and so many people that are willing to help. We put him in a special needs preschool right away and then main streamed him for Kindergarten and first grade. His teacher is fully aware of his Autism and works side by side with me and his IEP team. The IEP team is wonderful. They are there for you and your child and they listen. I love it. Recently, Corbyn's teacher recommended that he be put in Resource for 30 minutes a day and at first I was thinking, I just don't want him to be made fun of, but I agreed for the sake of his education. He has done so well and is finally learning how to read (phonetically even, which is difficult for Autistic children). I will be the first to admit that he does struggle socially. It tears me apart at times. I watch some of the kids in the neighborhood treat him like crud sometimes and it is the hardest part for me!!!! He tries to fit in and some of the rougher boys just don't cut him any slack. I read a really good book called, "A parent's guide to High Functioning Autism and Asperger's Syndrome" and it suggested getting him an older peer group that will basically take him under their wing. We are probably going to try that sometime and see if it helps. He is happy though. He has a couple friends that are really understanding of him and they treat him really well. Most of the time he just stays home and hangs out with me, but he's happy and that is the most important to me. I am convinced that he is going to live a normal life and have the same opportunities as my other children. Whether he struggles socially or not, we are helping him with that everyday. I know that if we are always there for him and always aware of his needs, he will progress leaps and bounds. As we have been working with him these past 3 1/2 years, I have seen significant changes and I know that he is going to continue to progress. He is the sweetest boy and when I get to see the "real him" at times, I feel so optimistic for his future. (Most people can't even believe that he's autistic.) I am so sorry this has been a hard day! I remember those feelings and I remember those tears, but I also remember that my son's life only got better and better from that time forth. I wish you the best!!!
It is so hard to see our children struggle and not be able to take that away from them. It sounds like you have some good friends with this kind of experience and some good resources, but my thoughts are still with you. So sorry.
I'm so sorry, Ali. I can't imagine what you must be going through. I had no idea that he was having those issues. I would imagine the resources available today would be great. I wish you the best with this.
Wow- life is always full of ups and downs. Luckily we are SO blessed with so many resources, state aids and ever growing research these days. But, I'm sure that doesn't make it feel better YET. I do know that Brevan is so blessed to be in YOUR home. You and Ryan will give him everything and more he needs. What a blessing for him! WE love you guys.
I don't see anything wrong with crying and being sad. You should have some good crying moments. But, then remember all the good:)
My father in law in Liberty is a conselor. He has dealt with Aspergers before. just a thought:)
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