David is working on basic concepts like 1:1 correspondence- he still struggles with counting items past 7.
David is able to read, but not often able to tell you what he read without prompting.
David is able to know enough to be aware that he needs to use the toilet, but either not able to recognize the need to go, or not aware of when he is going. Instead of asking for help however, something many 2 and 3 year olds will do, David has recently started hiding his pullups that have poop or hiding his soiled underwear. We talk about the reasons this is not a good idea. I implore David that when he has an accident I am not mad, I just want to help him clean up, and yet this weekend I have found 3 pairs of soiled underwear or dirty pullups in David's bedroom.
I know in many ways it is hard for parents when their children have a disability that is visible. That said, I often wonder how life would be different if David and Matthew looked more disabled. It took me until Wednesday night to shop for David''s birthday presents, not because I wasn't excited for his birthday, but because his list hasn't changed in 7 years. For David's birthday, we bought him a train set and a 1000 piece puzzle. We bought him Mickey Mouse Duct tape, Sponge Bob duct tape and a cook book. He is still in the phase where he loves Mickey Mouse, Brio trains, and stuffed animals. Most 11 year olds are into sports, or science, or chapter books, so it was hard to emotionally ready myself this year to once again shop in the preschool department. For some reason, this year it was harder than in years past.
The decision has been made that David will be staying in 5th grade next year. He has an awesome teacher, an amazing team and is in a fabulous classroom. That said, his buddies from preschool are all moving on to middle school. David is not ready for middle school. I know this. However, I have been David's mom for 11 years. After 11 years, including 6 in Elementary School,kindergarten-5th grade, he is supposed to go on to Middle School. My friends will be touring Middle School this summer with their kids. There will be school dances, parties and other life experiences that I thought we would be a part of, and we won't. David won't notice. This decision is good for David. It just is hard for me. Essentially this is a precursor for me to go through as there are more and more phases of life when my friends children are entering independence, and we are still functioning at a younger level.
In many ways this younger level is great- he still snuggles with me, watches Mickey Mouse, and goes to bed at 7:30. However, my hopes and dreams for him; to play a sport, learn chess, win the spelling bee, and more have all had to be altered. I have had to readjust, and most of the time, I have done so, with little problems. I love David's youthful innocence. I love his childhood passions. I love that he still sleeps with 2 Mickey Mouse stuffed animals. That said, I would love to see what he would be like as a typical 11 year old. Would he be the star catcher on his team? A track athlete? Would he be in theatre? Would he love the arts? Who would he be if his DNA had come together as it was supposed to? Who would he be if he didn't have the duplication on his 15th chromosome?
I know at the core he would be lovable, gentle, kind, and sweet- he is all these things already. But the other pieces of his puzzle, will remain unknown at least for now.