“Diagnosis is not the end but the beginning of practice”

“Wow, he doesn’t stop does he? He’s been running around all lunchtime. Superstar.”
The statement was uttered by a slightly out of breath teaching assistant Oscar had apparently been giving the run around that lunchtime. I’ve been picking Oscar up from school every day at 1.20pm, which has meant he’s had his lunch, enjoyed some outside playtime with his peers, then gone home to relax so as to not push him too far, too soon with longer days. On this particular day, Oscar’s actual teaching assistant was away on a Makaton Course so her position was being covered by another member of staff (a lovely lady, I might add). And she was absolutely correct in her statement. I don’t doubt for one second, that at school, in the playground, he does not stop. 
On my walk up to the school, I could already feel a lump in my throat and my bottom lip starting to wobble but I’d held it in. But on my arrival for pick up that day, her comment, although well-meaning and a positive in her eyes, felt like another blow to my already heavy heart.
I’m being dramatic, I know I am, but earlier, sitting in the paediatrician’s office with Oscar, she had suggested that in another year, we might like to do an assessment on Oscar to see if he has “ADD” (Attention Deficit Disorder). I would say it was a shock but she is the third professional in the space of a few months that has uttered these three letters to me. Three letters that every time, seem to cut a little deeper.
The paediatrician’s office was sparse. Lots of space, a bed, a few chairs, a device for measuring your height and a chair to sit on to measure your weight. As the doctor and I discussed Oscar’s progress and any medical issues that may have arisen in the last 6 months, Oscar jumped up onto the bed, standing on a conveniently placed box to heave himself up. It wasn’t done with any sort of grace or decorum. More like a bull in a china shop. He sat there for a while but then jumped off and started playing with the device to measure your height, clumsily knocking it over as he moved on. He flitted from one chair to another and if I’m completely honest with you all, he wasn’t still for much longer than a few seconds at a time.
“It’s not something we’d be thinking about yet,” she said, “more so when he’s around 5 or 6 years old. He’s still so young, it could be that it’s an immaturity thing. There’s not that much in this room to keep him occupied. But I’m noticing today, nothing’s really holding his attention. What do you think, Mrs Roberts?”
She was right. I knew she was right. He wasn’t sitting still at all and if I was her, I’d totally think he had ADD. And to tell you the truth, it’s been something I’ve been thinking about for a long, long while now. But equally I genuinely had thought, that in the last few months he had calmed down. He seems to be playing with toys at home more than he ever did before. He now enjoys sitting and listening to a story being read to him (he would have never have done that 6 months ago). A while back if he’d been watching television, he’d never actually sit and watch it… he’d be watching but invariably doing some sort of acrobatics off the sofa. And that had definitely stopped. So what I thought truthfully, was that because he’d calmed down considerably, the niggling thought at the back of my mind, might have meant that I was wrong.
We talked for a while. I told her she wasn’t the first to have said it. His thyroid consultant had asked me much the same thing a month or so ago, when he’d climbed on the bed in her surgery and intermittently played with the curtains. His OT attributes his energy levels to his sensory seeking and says if we can find ways to manage that, then she’s certain he’ll calm down. But who knows who’s right here?
What I do know, is that day in the paediatrician’s room, my heart hurt again. It didn’t hurt the way it did when I got the potential Down Syndrome diagnosis. That was another level type of pain. But it hurt at the thought of Oscar having yet another diagnosis against his name. I felt cross that this kid has had enough to deal with in the 4 short years he’d been on this planet. He didn’t need another label surely? She reassured me that it may not be the case at all and that it might just be that he’s young and him being a “typical” boy. But she said that we needed to be on top of it, if it turned out he did indeed have ADD from an education/learning point of view. She said before our next appointment (in 6 months’ time), she would ask the school for a report from their perspective. She’d ask how his focus and attention was, how he was learning, how he was getting on generally. But listening to her I realised that the other kids I’ve been around who have DS, are probably not as lively as Oscar. Maybe my fears, however deep routed they were, were about to be confirmed?
I guess what I’m most gutted about is my reaction. I’m going to be honest. I have always vowed I would be honest on here. But I’m cross with myself because I have done exactly the same as what I did when I found out Oscar had DS. I panicked, imaging all the things that that label meant, without really knowing much about it. I had an image in my mind about what having a child with DS meant and could only think of that. That awful image when the reality, I later found out, is so far removed. But I’m now doing the same thing with ADD. In my head right now, all I can think of, when I think of a child having ADD, is them charging around, out of control and unmanageable. I’m thinking about despairing frazzled parents, trying desperately to control their child but to no avail. I have an image in my mind about ADD, a fear about what the title means, before I’ve even understood it and what it means for Oscar… and for that I’m annoyed at myself. 
The paediatrician’s words to me as we concluded were, that IF Oscar did have ADD, it could be managed with medication. I of course knew that and did feel some relief that there would be help out there, should he need it. If his focus and attention was better, surely that’d mean his learning would progress more? That could only be a positive. But I felt sad that day, walking to school to pick him up because I realised this could potentially mean, MORE medicine. MORE intervention. MORE challenges, I guess.
I know that whatever happens, there’s no point worrying about it now. A lot can change in 6 months to a year and it doesn’t sound as though she’s going to be assessing him anytime soon. It doesn’t change anything really, he’s still my gorgeous little boy and if he happens to have ADD too we will tackle it head on, like we always try to do with anything that gets thrown at us. The thing I’ve realised is that life has a habit of throwing us these curveballs from time to time. It doesn’t change Oscar as a person at all. He is loved and that’s all that matters ultimately. But perhaps it changes me again. Despite priding myself on trying to look on the brighter side of life and at the bigger picture (there are worse things to worry about in the world, right?) it feels like another setback, another grey hair or wrinkle (to add to the rest), another dent in my already bruised heart.
I’ve said it before though but THIS IS LIFE. The life I’ve been given. Regardless, we’re gonna live it in the only way we know how. And just as I take in all the things all the professionals say, worry and mull them over, I must also remember what Oscar’s TA said when I picked him up that day. She said “Superstar” … “He’s a superstar” and she was right about that one. Diagnosis or not, he’s still exactly the same person he was yesterday

1 comment

  1. Anne Higgins   •  

    Love your blog. When our son was growing up we were told he was disruptive,terribly badly behaved and thousands or it seemed like thousands other things not one positive about him. We moved town and enrolled Simon in a different school. I thought i should be honest and tell the headmaster all of terrible things that had been said about our almost eight year old and he said to me, there is no such thing as a problem child but a child with a problem which is another matter all together. It was an aha moment. I never looked at it like that? I know it’s not the same thing with your son but it made the problems seem less and we all blow things out of all proportion when it’s our children and we also think the worst. Good luck, I am sure that your fears are groundless and remember mothers instinct. Trust it.xxx

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