Get a cup of tea or cappuccino and get comfortable – this post is going to be long… This has been a very busy summer. I’ve been on a lengthy paperwork trail. It’s tedious and time consuming – but a necessary evil.
One of the things we had to accomplish this summer was another psychological assessment for Henry. I had suspected as much when we began to apply for colleges. Henry’s previous assessment was 10 years old – he was 8 when we had it completed. First, let me tell you about that journey….
I’m often asked, “When did I know something was “wrong” with Henry?” I don’t think that the word “wrong” is accurate. I can tell you this…. I knew that he was a very difficult baby! He never seemed to sleep – except on top of me! When I tried to lay him in his crib, he would wake up and bellow – whereupon, the whole rocking, trying to fall asleep business would start all over again. When he woke from naps or in the morning, he would cry for at least 30 minutes – nothing could soothe him. And he wouldn’t take one of those soothers – every time I desperately tried to plug him with one, he would spit it out! He hated transitions… (enough said on that subject!) He didn’t seem to feel heat or cold… or pain – which really freaked me out! His food sensitivities seemed to start when I cut off the bottle. He was obviously a late talker – you really couldn’t understand anything until he was 5. But did I know something was wrong? Not really… until preschool.
His teachers expressed concern… He was apparently staring off into space while the rest of the children were engaged. There were some incidents of him acting out (that’s politic speak for hitting, tantrums, etc.) It got to the point where I sometimes dreaded picking him up from preschool – with one of his teachers approaching me with a quasi-smile to tell me of the latest incident. So – I started with some consultations. Before preschool, I had consulted some specialist because he was in his hitting/biting phase (at that point, hitting and biting me when he was frustrated – which was frequently). I had no idea what to do. The books were useless… There was no internet. I received some excellent advice at this time. Then after he began preschool, I was referred to the public agency that “does” assessments. But before they did that, there was a hearing test administered (something that Left Brain has insisted I do recently because I can’t understand his mumblings…) It was actually pretty funny watching him behind the glass – he couldn’t say yes or no or lift a finger but he kept looking left and right for the sounds. The good news was – his hearing was perfect. But you might be horrified to learn that I almost started crying. Because if his hearing was okay, then what was wrong? They then saw him (after a lengthy wait list to get in), for a total of 30 minutes – this with a break in-between… I was given a one-page, 3-paragraph report that stated he had a speech disability. No shit Sherlock… Not helpful.
We decided that Henry was not ready for elementary school at that point and enrolled him in another year of senior kindergarten. Henry was born in September anyway, so wouldn’t be that behind his peers. I consulted an educational consultant to try to find an appropriate school for him. I basically quit everything that year… I used to play competitive tennis – not only was it a wonderful respite, but I enjoyed the social aspect of it and hey – it’s fun to be good at something that’s only about you. She did not give me any kind of diagnosis, but was helpful in finding us some options. Now to get those schools to accept him – but that’s another story….
By the way… just so you know? This has been an incredibly hard blog to write – I’ve been taking breaks constantly… It’s hard to relive this and to try to accurately describe what this time was like. So I’ll pick up the story in another instalment…
I am feeling a little bit of what you must have been going through. Having worked in the “field”, the anxiety parents feel while trying to figure out the puzzle, when even professionals are baffled, is truly overwhelming. I read every word you write because it is so truthful and heartfelt. good luck with the next chapter
Thanks… It’s a difficult process, but sooo necessary. It enabled us to move forward and try to find some solutions.
Christie, This must have been so hard to write. I can’t imagine what that must be like to have a very young child that you know something is going on with, but somehow no matter where you turn you are left in the dark. I found this post really riveting and heartbreaking. I know it is difficult to write, but you have such an important story to share. Thank you for writing!