I guess I should give up and just say I'm and occasional poster. It's not that I don't have stories to tell or things to say. It's just at the end ofthe day I'm so burnt out I'd rather just goof off. 4 days a week I'm running until mid afternoon. Sundays I can take it slow but I have to work in the evening. Saturday has been birthday party day whether or not Ken has a wedding to shoot. So Friday is my one day to chill, which I can only kind of do with two kids in the house. Not getting dressed until noon on Friday is one of my small pleasures. I can hop online for 10-15 minute stints during the day but that's not enough time to do anything but read mail and catch up on other people's lives. And when monkey boy is in the house I can't concentrate on much of anything, he knows two volumes loud and screaming. Boy I miss nap times. Then again I cry everytime I think about him starting Kindergarten in the fall.
Anyway what got me to finally post is the munchkin. I took him to Kennedy Kreiger's CARD(Center for Autism and Related Disorders) for follow up testing. Last October we were given a diagnosis of PDD NOS. But the doctor felt he was still a bit young to pin down an exact diagnosis. Friday we were told Autism. I know this seems like a worse diagnosis and even though I was kind of expecting it I was still crying. The doctor was able to put things in perspective for me. She said there is a lot of argument in the field about diagnosis and criteria for the various spectrum disorders. So until things are changed she goes by the criteria listed in the DSM IV. There is specific criteria for both Autism Disorder and Asperger's Syndrome, if a child doesn't fit either one they are given a diagnosis of PDD NOS, kind of a catch all. Within each disorder there is a scale of how severe it is. Any where from severely mental retarded, and needing full time care, to very bright and fully functional. She did say based on the progess he's made, the program we have is a good one. If we find we need more help or different help to let her know and she can help us contact the right people.
This whole thing makes me worry so much for my sweet boy. I know he's bright but I also know he doesn't learn things the way school districts like to box kids into. I'm not worried so much about elementary school, it's when he gets older, middle and high school. Heh I worry about both of them getting to that age. I fear monkey boy won't be challenged enough, in the middle years. I know our high schools have very good advanced and AP classes, it's making sure he gets there.
Well while I was pondering all this I realized what my complaint of lack of creativity the last year really was. My output in 2008 was only slightly down from 2007. What I missed was the easy flow I had from shortly after the munchkin was born until early 2008. It was about this time last year that I started thinking something was wrong. He had his 15 month appointment and was barely walking on his own, only had three words, and had lots of trouble with fine motor skills, didn't turn when his name was called. Our pediatrician suggested hearing testing and if things didn't significantly change he'd suggest additional testing. So basically my head has been in a whole nuther space the last year. I guess knowing for sure is a starting point, and we can figure out where we need to go along the way. But it may be a while before my flow comes back.
2 comments:
I have always wondered how my mother survived. Back in 1970, no one had any idea about autism or asbergers. My brother was labeled as retarded at first and then just slow learner after that which did not fit at all because he knew more than all of us.
He is 11 months and 11 days older than me yet I hit all but one milestones before him. That had to be difficul for my parents.
He is 41 years old and still lives at home with my parents. It just works for the three of them. I do wish he could have had some of the early intervention that is avaliable today as I think he would have been able to live on his own and be able to do more for himself.
He has a full time job. He works at a small tool and dye company. He's worked there now for nearly twenty years. It is a wonderful place for him.
He has 8 nieces and nephews who think he is the greatest. I know he enjoys them as well.
I wish you the best of luck and am happy that there is so much information and ACCEPTANCE out there now. You will have a better go of it than my mom did.
-Woodsy for DSP
I can only imagine what this means to you. The good thing is after the initial shock you can get down to business and help him succeed. It is not the same but I can still remember when the doctor finally told me Benjamin had asthma, I knew he did, he had 5 bronchitis in 6 months but the finallity of the label was hard. But now he is succeeding because of the label. Anyway will pray for both of you.
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