The stares. I'm still not used to the stares. And it's not kids; it's adults; it's other parents. We were surprised by this part of it. I suppose we shouldn't have been though. Three weeks ago, Darling 1 got two casts from below his knees down to his toes. He isn't hurt; he isn't in pain. He is a toewalker and has been since he began walking at 10 months.
I've been working on treatment for this since that time. Finally, he's getting treatment. He's growing new muscle in his calves that will give him more range of motion. We have a remedy. Every Tuesday he gets new casts, slowly, but surely changing the angle of his foot.
The new casts each week is the fun part of this process. He is being very brave, and we are very proud of him. He has had only a few melt-downs about not being able to wiggle his toes or being itchy, etc. But he knows what the casts are doing, and he wants to be able to walk flat-footed. So, he endures.
His friends, classmates and teachers have been wonderful about it. They love to see what colors and designs will show up each Wednesday. They are totally accepting of his new look. Darling 1 gets around perfectly fine; he just can't run, but he can walk really fast.
Mind Your Own Beeswax
The adults we come in contact with, or merely pass by, are the ones who stare and ask questions; questions that make Darling 1 cast a fixed gaze to the ground. The stares have gotten to me. I stare back. I answer the probing questions from strangers with terse, vague answers. Darling 1 hasn't noticed that anyone is rubber-necking as they drive by as he happily walks along next to me on our way home from school or as we amble into the store from a parking lot or as he easily makes his way up, over, under and through the playground equipment at the park or while we wait to be called back for our appointment at Children's Hospital. Thank God.
I know these strangers don't mean any harm; they don't mean to be rude; they're simply curious. "Two casts?" "Wow, two broken legs?" "Oh, that must hurt?" "What did you do?" Well, when you're 5 years old and just want to fit in and you see the differences, those questions can be hurtful and perplexing.
I won't pretend to know all the heartbreak, the difficulties or the joys and the pride of raising a child with extreme disabilities. I'm sure they are many. But I now have a new appreciation for the outward appearance of something different from others, i.e. helmets, leg braces, etc.
IDEA Part C
If your young child has developmental delays or disabilities, you should be aware that on Friday, October 28, 2011, new, updated Individuals with Disabilities Education Act (IDEA) Part C regulations will take effect. IDEA Part C applies to the youngest of those at risk; birth to 2 years. Part C has been around since 1986, but has not been fully updated since 1999 (there was a statutory update in 2004).
Well, a lot has changed in our world since 1999. Check for specific information or topics in this side-by-side comparison of new and old text. There is a lot of text (over 900 pages); so, I suggest looking up the subject you are interested in and viewing those parts, as opposed to reading through all the regulations.
There are agencies trying to wade through these new texts and get summaries and outlines out. Here are a few websites to watch for more information: National Dissemination Center for Children with Disabilities (NICHCY), idea Partnership and the U.S. Department of Education.
IDEA aides over 340,000 children and infants. This federal grant program provides over 400 million dollars to State run IDEA programs. This program assists States in facilitating early intervention programs for infants and toddlers with disabilities and developmental delays. The objective is to prepare as many of these kids as possible for preschool and kindergarten to ensure a greater rate of educational success for these high needs kids.
If your child falls into these categories be sure to monitor the changes on the sites listed above. I also don't pretend to know much about the laws governing special needs and disabilities, etc., but the sites listed above specialize in these areas. And if your child does not fall into these categories, remember... please don't stare when you see a child who is different in some way. Over and out...