Despite all my efforts to find a “label” to apply to Harry’s delayed motor skills, I can’t seem to find one. It is not a common issue; he is one in 20,000 with a congenital profound hearing loss, and even less has issues with balance. It appears that it is a “bi-product”(and that is my own term) of his Deafness.
As you can imagine Readers, having followed this journey for the last year, I have discussed this need for a box or label with which to understand his issue with a number of Specialists- from our ENT, our Paediatrician to our Physiotherapist. But no-one seems to know exactly why Harry has these delays and he is struggling at the moment to stand on his own.
One consistent comment that has emerged through these discussions is that Harry is unable to work out where his body is in space. He requires a lot of sensory input to let his brain know that he is standing, the ground is beneath him and he can move up or sideways or go straight ahead in this space.
Our Physio appointments were only monthly and in between it was up to me to make things happen. It was only Physio that was trying to assist with his gross motor skills. It is like that with everything though- really the parents are the key to the child’s success. What you put in, they get out! I was trying as hard as I could but really everyone was waiting for it to just click into place for him.
So we have been bumbling along since January with Harry cruising around, and slowly getting more confident, but never really being able to go on his own as he couldn’t stand. Every time he stopped he fell, either on his face or onto a vertical surface he could lean against.
He never starts from standing- he begins his walking experience by leaning against a person or a surface and then launches from there. And this is how he stops. There has to be something there to break his fall. He has not mastered the STOP by STANDING.
This is still where we are at the end of April. So between me, the Physio and the Paediatrician, we decided the only therapy we hadn’t really looked at for this issue was Occupational Therapy. I know nothing about this field. The Physio warned me I might find it “woolly” but quite frankly so was Physio. I was recommended a particular practice not far from home and set about to get Harry started. It took nearly 4 weeks for them to find a therapist that was experienced enough to tackle Harry’s issues. I now know why, as in between I randomly surfed the Web to see who else in Melbourne may have had experience with hearing issues and balance in Kids, phoned around and dragged us all off to see what they had to say. I spend endless nights drawling through reports on the Web about sensory issues and most notably Sensory Integration Disorder. It was the only thing that seemed to be close to what Harry was experiencing. It talked about the use of Occupational Therapy to assist with kids who couldn’t work out where their body was in space. It was not easy reading, as there were a lot of other social issues linked to this disorder, which Harry wasn’t displaying.
Did that mean they were to come- was there still more to unravel? I don’t think so. I think it was an exercise in learning not to self-diagnose. It can be really soul destroying and ultimately damaging to all the work you have put in thus far.
The story ends well. I have found a lovely lady who is an OT and has worked with kids with hearing impairments and she seems to know what she is talking about. She spent nearly 2 hours with us on the first visit to assess what may be the cause of Harry’s lack of equilibrium. In that 2 hours Harry had moments of walking without a wobble and it was enlightening for me. By the time I came to see the OT I was at rock bottom. I had convinced myself Harry was suffering from any number of disorders and was not making enough progress. I guess this is what comes of seeing so many Professionals- conflicting advice and opinions, when actually most of them, like us, don’t always know “Why” something is not clicking.
She then requested that we line our hallway , which Harry had stopped attempting to walk down, with rubber mats. The hallway was a means to get around most the house and he either crawled or pushed an object to get down it. When we tried to get him to walk down it alone he belted his head on the hard Jarrah floor so many times he just stopped trying. And who would blame him. This is because he seems to be missing the basic reflex of putting his hands out to save himself when falling. His head always hit the ground first. And with the delay in walking came enough age( or maturity) to know that it was a painful experience and not worth doing anymore.
I have some video with the mats down in our hallway and Harry’s sheer glee at being able to manoeuvre himself solo for 12m. The first evening he walked up and back about 15 times just to make sure he wasn’t dreaming. The OT made some other requests which I have been doing and altogether I have seen a vast improvement in his steadiness and confidence over this week.
I will add a page into the Blog under Useful Links all about OT so if you think it might be something useful for you to read then it will be there. We will be going weekly until our trip to the UK in June and so we will see what happens.