Friday, May 1, 2009

Update on SmallDaughter

Being a mom is always an adventure. However, being the mom of a child with special needs takes adventuring to whole new levels. Watching SmallDaughter is like watching childhood in slow motion. BigGirl and LargeBoy learned and grew so fast that you didn't really notice how much work they put into it.

With SmallDaughter, everything comes after so much work that you savor EVERY milestone, every goal met. For instance, we have been working on a physical therapy goal of learning how to bend the knees and then jump! This has been one of our PT goals for six years now! And, finally, the other day, she jumped out of the van for me! YAY!

We had her IEP meeting with the school on Tuesday. For those of you who are (luckily) not in the "alphabet soup" of Special Needs Jargon, an IEP is an "Individual Education Plan" and is supposed to be a meeting of all of the teachers, therapists, school administrators and parents to plan how best to meet the child's needs. It often ends up confrontationally as parents are frustrated by the lack of care for their child or downright disregard of previous goals and objectives. However--this time for us, was a love fest! SmallDaughter has awesome teachers, who are helping her achieve, while staying within her realistic abilities. I am really grateful for them.

She can be incredibly hard to live with. I don't think anyone can understand how exhausting it is to live with special needs 24/7 for days and weeks and years until they are in it (just like you can't get the reality of pregnancy or child rearing from a book). She is about 2 1/2 developmentally. When I hear moms complain about the "terrible twos" it makes me laugh--we have been doing it for 5 years!

Plus--she has no sense of self preservation at all, no sense of aversion (so she eats horrible things like bananas in the peel, raw pork chops and boiled eggs with the shell). Dinner is always a race--me to get the food into the pan and into the oven before she gets it and runs away laughing.

On several occasions I have thawed the meat in the microwave, only to find that she has opened the door, cut open the package and shared it with the Wonderdog (who is her Service Dog)--no wonder he loves her so much! She pours, dumps and ruins things(mere words cannot express what an understatement this sentence is!). She has written on every surface in our house--using every imaginable media--pens, markers, crayons, gluestick, deodorant (which will write on ANYTHING--glass, wood, carpet!)

Every door, cupboard and drawer is locked. The fridge is locked. Anything you can write with is stored at least 6 feet high (you think I'm kidding!). She watches to see when anyone leaves a lock undone. She loves sharp objects--scissors, knives, and will stash them so she can get them later! She loves to cut her hair--and her clothes.

She has also lost another tooth. This is a MUCH less dramatic affair than it was for the other kids. Unlike BigGirl and LargeBoy she doesn't believe in or care about the Tooth Fairy (no understanding of abstract concepts), and she can't tell you when one is loose. So, I suppose she swallowed it--last night I just noticed there is a gap that didn't used to be there! That is all. No fuss, no complaints (unless you try to wiggle it for her!)

She is such a bright spot in the life of anyone who comes in contact with her--especially once they get past her surface "differences". She is incredibly funny! It still stuns me how someone non-verbal can joke so well. She is bright and smart and stubborn. She loves getting to choose and express an opinion. She loves getting to help and be useful. She teaches us about simple, pure love, and the importance of each soul. She reminds me to laugh.

As crazy as she makes me, I am so blessed to be her mom.

1 comment:

  1. I am a friend of Patrice's and read your post about her and then saw this post and had to read it. I have a son who is almost 6 who is autistic. I laughed so hard when I read about your daughter writing with all sorts of things including deoderant. My son loves drawing with deoderant as well. The worst was when he fingerpainted the house with his own poop. I literally thought I wasn't going to make it through that stage! Recently he decided to spray all my furniture with hairspray. It left a sticky residue all over everything, but at least it smelled good. Anyways, I enjoyed reading your post about Patrice as well as your post about your daughter. Thanks for sharing.