A friend of mine over on Facebook shared this post from Scary Mommy's site. For those who don't feel like clicking through, it's a wonderful "heart to heart" post regarding labeling children and how, whether you like it or not, if you kid needs a label, your kid needs a label.
And I'm 157% behind her on this. Because I've dealt with the system both with and without a label and let me tell you, having that diagnosis, that "label" makes a world of difference.
I remember the days before Pete got his ADHD diagnosis, even before he got his SPD diagnosis. Days of wondering when the next phone call would come because of his bad behavior in his Parents' Day Out program. Wondering why he didn't like almost any food. Worrying about temper tantrums whenever we went out, or worrying that he would take his clothes off in the middle of the store. Afraid that I was a bad parents because his behavior was so bad, and desperate to know what I had done differently between Teddy and Peter. The fears that he'd never be successful in school because he was so far behind, academically and socially, what other kids his age were doing and how they were acting. Despair that I would have to figure out how to home school him, because it would be his only option.
I remember the hope I had when we got into the Regional Intervention Program. The tools they gave me made me feel so much more secure in what I was doing, even though the behavior problems were still there. He was actually worse behaved on our last day at RIP than we were on our first. But, even though there were the fears that he would still have problems in school, I knew that I was doing my best at home and I knew how to best let him know what was expected.
I remember talking to his doctor next about how far behind he was developmentally. He wasn't holding a pencil as well as his peers, he wasn't quite as social, and didn't have the knowledge that he should have by then. An evaluation at the Children's Rehab was in order, and that's where I found out about Sensory Perception Disorder (SPD). I worked with his therapist on ways to make him more comfortable, to find where his limits were and to give him a little more of what he needed for starting school.
I remember being convinced that I had everything I needed to get him the help he would need at school. I had a diagnosis, I'd requested a teacher both he and I already knew and I was ready to fill out an IEP for him. But the SPD label wasn't enough. The AAP (American Academy of Pediatricians) didn't recognize SPD as it's own separate disorder. Because it was seen so often with children in the autism spectrum and children with ADHD, they bundled it as an effect rather than a disease itself. So I had to fight to get his IEP meeting set up. He had to go through a lot of the same testing again to get the considerations that he needed, like having speech therapy or having certain items in the classroom to help when he had sensory overload. The school wanted to help, but their hands were tied because I didn't come in with the proper label. (Though his teachers were fantastic in keeping in touch with me and helping work out ways to help him be in a position to learn.)
I remember his first suspension, when his lack of impulse control caused him to poke a friend in the chest with a pencil. Not because he was angry or out of control but because he wanted to find out what would happen. The anger fits, the taking off his shoes and chewing on his toes while sitting on the rug became worries of another time. I knew that something more needed to be done. That the IEP we had and the label of SPD wasn't enough.
I remember hearing back from his doctor when I told her about this and hearing the words "He may have ADHD. If you and his teacher will fill out this paperwork, we can find out." There was fear there. ADHD brought visions of children drugged to zombiehood to mind, memories of "Ritilan Kids" when I was a girl. I didn't want my wonderfully creative boy to lose that creativity and become someone other than himself. But I knew that something needed to be done. So I passed the paperwork on to his teacher. I filled out the paperwork myself. And I turned them all in to his doctor, waiting to hear the verdict.
I remember a small sigh of relief, interspersed with the fear of "what now?!" when she told me that, based on the answers from his teacher and I, that he was ADHD. And that we would need to meet to talk about the best medication to put him on.
I remember how much easier things got after that. I was able to show the school an official diagnosis of ADHD and have it put into his file. The label would follow him all through his school career, but it would mean he'd be able to get whatever help he'd need instead of having to fight over and over for it. I was able to get him on Adderall, a drug that slowed his brain down enough that he became a fantastic student but didn't dull the creativity in the least. Finally, we'd found the answer. And if the answer came with a label, that wasn't what was important. What was important was the answer.
We all have labels. One of Pete's is ADHD. One of mine is Depression Sufferer. One of Teddy's is Gifted One of Rich's is Funny Guy. But labels are just one part of what makes us who we are. I can also label Pete as Creative. Mine as Mommy. Teddy's as Quick Tempered. Rich's as Trivia Master. The individual parts don't matter as much as the whole does. And if anyone feels like that one label can define my child, me, or anyone else, they aren't someone whose opinion matters anyway.