Friday, December 30, 2011
Christmas Eve Party= Success!!
Christmas time this year flew by! I swear I blinked on Black Friday and next thing I knew it was Christmas Eve! We did our usual Christmas routine, we went to Uncle Jake's house for his Christmas Eve party which this year JJ went inside!! Yes you read that right I am so happy he actually went inside! We have been going to "Uncle Jake's Mommy and Daddy's Christmas party" for 3 yes 3 years now and never once have we made it past the front room. Every year we walk in and go about 3 steps in the door to the first couch and that is where we spend the night, away from the crowd, away from noise, away from fun. But not this year! This year John decided that it was cold right next to the door and maybe we could find another corner that was still quiet but maybe warmer. So off we went for a warm corner we walked threw all the people over to the living room next to the fire place. John took off his coat (one thing about John is he WILL NOT take off his jacket if he is uncomfortable. I swear it's so he can run out the door at any given second if he doesn't like whats going on) but anyway he took off his jacket.... then his shoes. My boy was VERY comfortable! One thing you have to understand is Uncle Jake (Uncle Jake is Andrew's best friend, he met JJ when JJ was about 2, right after JJ was diagnosed with autism) is that Uncle Jake is one of the most sincere, nicest people you will every meet. Also Uncle Jake loves JJ and Julia, in a way only and Uncle could. And of course Uncle Jake gives the best gifts... electric drum sets for a 3 year old.... yes those kinds of "best gifts" but we love Uncle Jake! Uncle Jake has always went well out of his way at his Xmas Eve party to make sure JJ is comfortable. This year JJ fell in love with Jake's dad... who well he tried to get JJ to call him Uncle Leo will always be known as "Uncle Jake's Dad". JJ spent most of the night letting Uncle Jake's Dad know when the fire was low. He talked to Uncle Jake's Dad, he played with a little girl about his age and just had the best time!!
Tuesday, December 13, 2011
Autism.. a family diagnosis.
On nights like tonight it's thrown in my face that autism really affects the entire family, especially Julia. At John's school tonight they held their annual family holiday fair. Last year John LOVED it! Well this year was a much different story, I don't know if it was the classroom change, the star he couldn't have, mommy talking to the other adults, Julia having a blast, or hell maybe the stars were just not in alignment tonight whatever it was made it a disaster.
I should have know when we walked in and John wanted to go right into his classroom which was not one of the open rooms, but I thought we could power threw.... how wrong I was. We started upstairs in his old classroom and they had the star of the day star hanging on the bored.... John wanted it.... and no was juts not working so we left that room and tried the arts and crafts room (Julia's favorite!) John wouldn't step foot inside. Julia went ahead in with Andrew she looked so proud, so happy to be in school! She sat down at the table with all the big kids and painted her tree. She would have stayed there all night had she be given the choice. After about 10 minutes we attempted the movie room again (passing the music room which is something Julia would love), John was not having it so again Julia went in with Andrew and when I say "went in with Andrew" really she walked in all by herself and Daddy followed her so she didn't get lost. She went up to the teacher she never met and asked if she could please have a water, sat down and watched the movie with the kids. She had a blast!
Like many other things it was cut short. John could not deal, we had to leave knowing full well it was not fair to Julia. Knowing Julia could stay and play till it ended, we put on her coat and left promising that when we got home John would be going to bed and Julia could stay up and paint. John cried all the way home while Julia talked about colors. At home John screamed in bed while Julia painted her little heart out and I watched and couldn't help but question how much will she miss out on in life?
I should have know when we walked in and John wanted to go right into his classroom which was not one of the open rooms, but I thought we could power threw.... how wrong I was. We started upstairs in his old classroom and they had the star of the day star hanging on the bored.... John wanted it.... and no was juts not working so we left that room and tried the arts and crafts room (Julia's favorite!) John wouldn't step foot inside. Julia went ahead in with Andrew she looked so proud, so happy to be in school! She sat down at the table with all the big kids and painted her tree. She would have stayed there all night had she be given the choice. After about 10 minutes we attempted the movie room again (passing the music room which is something Julia would love), John was not having it so again Julia went in with Andrew and when I say "went in with Andrew" really she walked in all by herself and Daddy followed her so she didn't get lost. She went up to the teacher she never met and asked if she could please have a water, sat down and watched the movie with the kids. She had a blast!
Like many other things it was cut short. John could not deal, we had to leave knowing full well it was not fair to Julia. Knowing Julia could stay and play till it ended, we put on her coat and left promising that when we got home John would be going to bed and Julia could stay up and paint. John cried all the way home while Julia talked about colors. At home John screamed in bed while Julia painted her little heart out and I watched and couldn't help but question how much will she miss out on in life?
Thursday, December 8, 2011
Beating Autism.
Alone. Being alone always sounds like a great idea and the first 2 hours are great, I can lay around and watch TV without being asked a million questions. But after 2 hours its just lonely. John started his very first day of typical school today. It felt like it was his very first day of school (he's not even changing buildings just a different class room.... its even on the same floor) but I was so nervous, and to make matters worse I let his dad drop him off and pick him up. It shouldn't have mattered he's been to that school, walked in that door hundreds of times but today was different, today he was in the typical class. Two years ago I had this dream for him to go into a typical class by the end of elementary school, he did it less than 2 full years.
John is growing by leaps and bounds every day, I know he will do great things in life, but as he grows it's becoming more and more clear he was misdiagnosed with autism. I hate the term "misdiagnosed with autism", I don't feel it's far or right. He has (and still has to a much smaller degree) problems, but he has worked his tail off for over 2 years now, when other kids were on play dates John was stuck in rooms with specialists, other kids went to the zoo John went to early intervention, aba, floor time ect. He's worked so hard to come so far and to be told sorry kid it was all for nothing. No I don't accept that. I was at John's IEP meeting last week and the principle and teacher both suggested maybe John was misdiagnosed. No we were lucky, damn lucky that we caught John early, that we had the resources to get all the therapy he needed, that I made a choice to do everything in my power no matter what the cost. And let me tell you the price tag was high, my first marriage went up in flames mostly over not agreeing on how to handle autism, we lost our home because I had to be home for John's therapy, hell even when I remarried our wedding day was effected by autism, we gave up our dream wedding to be married earlier and have better support for the kids. Our entire life for the last 2 and half years has been autism, it consumed us just like a cancer patient's family is consumed with a diagnosis. But when your in remission your considered to have "beat it" but if you no longer fit the autism spectrum your misdiagnosed.. not in my book in my book John "beat it". So when we go back to the neurologist in a few short months and John is reevaluated and if he does not meet the "spectrum" anymore I wont be mad that he was misdiagnosed, I'll do the same thing I did when my best friend "beat cancer" I'll throw a party, I'll pack our bags and go wherever John wants to go. I'll be prouder than I've ever been and I'll hold my husbands hand and say "we did it".
John is growing by leaps and bounds every day, I know he will do great things in life, but as he grows it's becoming more and more clear he was misdiagnosed with autism. I hate the term "misdiagnosed with autism", I don't feel it's far or right. He has (and still has to a much smaller degree) problems, but he has worked his tail off for over 2 years now, when other kids were on play dates John was stuck in rooms with specialists, other kids went to the zoo John went to early intervention, aba, floor time ect. He's worked so hard to come so far and to be told sorry kid it was all for nothing. No I don't accept that. I was at John's IEP meeting last week and the principle and teacher both suggested maybe John was misdiagnosed. No we were lucky, damn lucky that we caught John early, that we had the resources to get all the therapy he needed, that I made a choice to do everything in my power no matter what the cost. And let me tell you the price tag was high, my first marriage went up in flames mostly over not agreeing on how to handle autism, we lost our home because I had to be home for John's therapy, hell even when I remarried our wedding day was effected by autism, we gave up our dream wedding to be married earlier and have better support for the kids. Our entire life for the last 2 and half years has been autism, it consumed us just like a cancer patient's family is consumed with a diagnosis. But when your in remission your considered to have "beat it" but if you no longer fit the autism spectrum your misdiagnosed.. not in my book in my book John "beat it". So when we go back to the neurologist in a few short months and John is reevaluated and if he does not meet the "spectrum" anymore I wont be mad that he was misdiagnosed, I'll do the same thing I did when my best friend "beat cancer" I'll throw a party, I'll pack our bags and go wherever John wants to go. I'll be prouder than I've ever been and I'll hold my husbands hand and say "we did it".
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