He turned 8 in May. That means 7 years ago, inside the pediatrician’s exam room, we answered “no” to all of the common development and milestone questions. You know the ones, “Is he crawling? Is he walking? What words can he say? Is he pointing at things? Is he sitting up?”. We answered no to so many of them that I think the pediatrician gave up on asking any more. We were referred to Ohio’s Help Me Grow program and the snowball began.
We had evaluations and home visits and it was determined that he needed therapy services, so because he was so young, we could go somewhere local and get him involved in a group setting and have weekly home visits to work one-on-one. That first visit at home, I was shown how to help him get on his hands and knees and to help keep him in that position, to encourage him to crawl. Yes, at 13 months he wasn’t crawling yet. But then he did. Four hours after that home visit, he crawled all on his own. Again, the snowball kept on rolling.
Through the years, we have gone to weekly therapy appointments, a number of tests to try and find a cause (and we have no answers still), group therapy, different therapists, schedule changes. It’s been SEVEN years of this.
We’ve also done the IEP thing.
Now, I shared the speech therapist issue so if you’re a regular reader you understand all of that. But what I haven’t shared is much more personal and deep.
This time around, we pursued the testing to see if Brenden qualified for an IEP because of a specific learning disability. It turns out, he does not. Because of the testing, which is more involved and includes adaptive behavior skills and IQ testing, we learned a good number of things about him. Things that will help him in school, at home, and in the community.
We learned that Brenden qualified for a new IEP because he has a cognitive disability.
Cognitive disability (mental retardation) is a term used when a person has certain limitations in mental functioning and in skills such as communicating, taking care of him or herself, and social skills. These limitations will cause a child to learn and develop more slowly than a typical child. Children with cognitive disabilities (mental retardation) may take longer to learn to speak, walk, and take care of their personal needs such as dressing or eating. They are likely to have trouble learning in school. They will learn, but it will take them longer. There may be some things they cannot learn.
It’s easier to share the definition than to write it out. The snowball is now so big, that it’s just a bone-crushing avalanche. Reading the new eligibility category was like having thousands of pounds of weight pressing down on top of me, smothering me.
For so long we’ve been under the classification of “speech/language impairment”, which is so simple (definition wise) to understand why: because of the articulation problems that he has. But now that we have IQ tests, and know there are several areas of social and self-help needs that need assistance, I feel like… I don’t know.
I’m not a bad mom. I can’t be. I’ve spent 7 years going to and from therapy. I let strangers come into my home in those early days. We’ve taken him for blood tests, x-rays, brain MRI’s, EEG’s, genetic testing. We took him to horse riding lessons because we were told it might help him. We’ve dealt with this stupid speech therapist issue and IEP’s.
But I feel like the worst mom ever. How did I not know sooner? Why didn’t we test for this sooner? Did I do something when I was pregnant? Did something happen during the birth? Yes I know there are things out of my control, but maybe if I had done X, Y, Z, or A, B, C didn’t happen…
So anyway.
I’ve said it. I’m “out of the closet”. My 8 year old, who made me a mom, is mentally disabled.
But mentally disabled is not who he is. He’s a LEGO building, video game fanatic, a top-bunk sleeping, NERF gun shooting, dog chasing, brother wrestler. He drives me nuts one minute, and then makes me so damn proud with his LEGO building (as in, finally following the directions to build real things – a helicopter, a golf cart). I’ll dig out from this avalanche (this emotional mess that I am) and we’ll take this on. I’ve said it a million times, but “God will never give you more than you can handle”.