“I think the worst thing we did at the beginning was to completely withdraw from everybody else because we couldn’t deal with all the questions from family and friends. We didn’t have the answers, we were struggling to cope, let alone begin to help those close to us understand what was going on.”
Claire Smyth, mum to Daniel aged 5, is telling us how she and her husband Jonny felt when doctors first told them they had no diagnosis for their son.
“Years ago,” she said, “at the very beginning, when we didn’t have a diagnosis, it was kind of like you didn’t know where you fit – I didn’t actually know if Daniel was disabled for a long time, if that makes sense. If he’d had a diagnosis of Muscular Dystrophy or Cerebral Palsy we would have known where we belonged – we would’ve easily been able to find some support because there are many, many families in that situation already. But we didn’t have that because he didn’t have a diagnosis.”
None of the doctors were giving them any indication of what their son’s condition or limitations might be, which must have been terrifying in itself, but neither could they tell them what he would be able to do, starving mum and dad of anything they could begin to process or anticipate or prepare for.
“We were still trying to get our heads around what this meant, what the future would hold. We didn’t know where to look for help. We had no idea whether he was going to walk, going to talk, whether he was going to have any self-help skills. We had no other children to compare him to because we didn’t know which kids to look at.”
And sometimes, well-meaning but ill-informed people made the whole situation worse.
“It was so difficult explaining that he didn’t have a diagnosis to other people, because they were constantly asking us: ‘do you know what’s going on, yet?’ Having to hear “no, we don’t know, all the tests are coming back normal” kind of took the seriousness away for other people, they would say stuff like -
Oh, he’ll catch up eventually
Don’t worry, he’ll be OK - I know a wee boy who didn’t walk until he was two-and-a-half and he’s at university now!
“We knew things were far from OK and a Doctor saying, ‘We don’t know what the future might hold for your child but it is likely he will need life-long support ‘ was a very defining moment for us, we knew things were likely never to be what we had thought, hoped and dreamed for with our first born child.
But we had a happy, ‘normal’ looking little boy and people continued to dismiss our concerns and on occasions suggest we were worrying too much.
Five years later we still don’t have a diagnosis but its something we hope for every day and continue to search for. We don’t get as many questions any more but even with no speech, no mobility and no self help skills at almost 6, we still get bizarre comments like ‘is he going to get better then?’ when we say he doesn’t have a diagnosis. We know that a diagnosis probably won’t change what we’re doing on a day-to-day basis with Daniel, a diagnosis might be able to show us a little of what the future might hold by giving us the opportunity to meet families with older children with the same condition. A diagnosis will provide us with certainty on the risks for our other son, Charlie in passing the condition on when the time comes for him to have his own family.
While the waiting and the battling with Clinicians goes on, Claire and Jonny continue to help Daniel develop, and they’ve been using the Upsee to help them do it.
“We’ve been able to work with the Upsee for about a year now, and his progress has been absolutely mind-blowing, without any exaggeration.”
“Probably around the time we were first asked to trial it, we had given up hope of Daniel ever being able to walk. He was four and I thought ‘right, this is it’ – he still wasn’t weight-bearing with any real effort, even if I held him under his arms he would barely put his feet to the ground, let alone weight-bear.”
“So then we started using the Upsee and, yeah, initially he still hung quite a lot and I was moving his feet, but very slowly and surely you could actually start to feel him weight-bear, which was amazing. And then you started to feel him initiate the steps, which was the next stage and that was crazy. And then quite recently he started to initiate where he wants to go. Now if you turn him away from the TV you can feel him pulling you back towards it. Just the fact he’s trying to do that, you know, it’s amazing.”
“He’s definitely still progressing. He can now stand in front of me without the Upsee, fully weight-bearing, and all I have to do is hold his shoulders. He is initiates his own steps and moves forward. This from a little boy who, this time last year, wouldn’t put his feet to the ground.”
They aren’t waiting around to be told what their son can achieve in future, instead they are giving him every opportunity to determine that for himself. And the progress they’ve seen in the past year has taken them from the brink of losing hope to now being more determined than ever.
“The fact that he has made such great progress in terms of his gross motor skills has just made us happier and more hopeful and more positive again.”
The wait goes on.
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