I missed a day of posting for Down syndrome month but I have my reasons. Yesterday was Down syndrome day for me. I went to T.’s IEP (individual education plan), which determines his therapies for the next year. Basically, it’s a meeting where you hear about everything your kid can’t do. It’s done in a very kind and supportive way and everyone knows the score – you are securing services for your child. Sure, you also hear what a great kid your kid is – and, I know it was sincere. He is loved. But, it’s hard. I can’t remember what this one thing is that he does but he does it like an 8 month old. I have completely blanked on what it is – I will have to ask next week. And – then I will figure out how to get him to do it like a 4 year old, which he will be on Monday.
Later I watched the HBO documentary Monica and David – which I loved but it scared me, too. It is about two people with Down syndrome who marry. Yay! That’s the great part. They were very much like a typical couple. Monica thinks she does everything better than David and David is very patient with her observations. They are both in their 30’s and struggle to convince their parents they could do more – they want to learn to cook and get jobs. They want independence. Their mothers are great but scared. What if they fail, what if people make fun of them, what if no one will ever love them like they do when they are gone. David says that sometimes he has Down syndrome and sometimes he doesn’t.
I told my husband we are getting a toddler bed for T. – no more crib. I am going to stop worrying he will hurt himself because he is little. We all get hurt when we learn. He is not going to be in a high chair anymore because he needs the stability of a contained chair. We can order a chair like they have at school. He is going to learn to cook later in life but my husband will have to that because I can’t cook.
Bottom line I have fears and T. doesn’t. Why give him mine? Sometimes I feel defeated by my fears and sometimes I am inspired by my fears.
Today I discovered someone who is my new role model. His name is Tim Harris and he has Down syndrome. If you want to learn about a person who gets it go to: http://timsplaceabq.com/
Read the section “About Tim”.
Oh, those meetings . . . they can be such bummers and so frustrating to listen to the weaknesses. There’s gotta be a better way to do it. Meanwhile, I say “play to the strengths”.
Such a great story about Tim! Very inspirational. Do you mind if I “re-blog” it?
You are a perfectly awesome mom for T.
Thanks! Please re-blog – I love the Tim story.