On the day my son was given his first diagnosis, I believed that at last we had found the answer.
The condition was diagnosed as dyspraxia, or developmental coordination disorder. It provided an explanation for some of the difficulties we were observing, in particular those relating to coordination, movement, and everyday activities.
After I was given a diagnosis, I did something that a great many parents do.
I tried to find out as much as I could and read material on the symptoms, the difficulties, and the various ways in which dyspraxia could impact a child’s everyday life.
In my research, I found that actor Daniel Radcliffe had also mentioned having dyspraxia.
The fact that I had made that small discovery gave me hope.
There was a man who had encountered the same sorts of difficulties and yet had become a successful actor known worldwide. This fact reminded me that a diagnosis might account for a difficulty without saying what my son could achieve in life.
Yet, although dyspraxia accounted for some things, it did not account for all of them.
I Still Felt Like Something Was Missing
As my son got older, I kept observing behaviors, developmental differences, and difficulties that didn’t seem to fit properly within the initial diagnosis.
I wasn’t always able to explain precisely what seemed to be missing.
I knew my child.
I was aware that there were still some parts of the puzzle that we had not found.
It didn’t mean that I didn’t love my son or that I was unwilling to accept him; rather, I wasn’t looking for anything wrong with him.
I was looking for some information.
I wanted to find out why some things were so difficult for him. I want to discover what support he requires. Above all, I wanted to make sure we were not missing anything important.
So, I kept asking questions.
I kept attending appointments.
I kept researching.
I was always pushing for more answers.
The Answers Came Slowly
Our journey did not stop with one appointment or one diagnosis.
As time went on, we gained a better understanding of my son and the way his brain and body functioned. Each assessment contributed another piece to the overall picture.
Eventually, genetic testing found a distal 16p11.2 microduplication.
Being like so many other parents who received a genetic result they did not understand, I decided I needed to carry out some more research. The terms sounded complicated and overwhelming.
By then, researching had become one of the ways I dealt with uncertainty.
I picked up as much as I could. I asked questions and made an effort to understand what the results might explain and what they could mean for my son.
Each answer helped us get to know him a bit more.
Then One Day, the Searching Was Over
I was finally informed that there was no further testing that we ought to carry out.
We had found out everything the experts thought we needed to know.
It was odd to find out that the journey was over after having spent so much time searching for answers.
We felt relieved to have done our best.
There was also a feeling of things being concluded.
For a long time, I had been wondering if there was another missing piece, and I had considered whether I should carry on pushing, asking, or searching.
I was finally able to stop wondering.
The chapter of our lives was brought to an end.
The Diagnoses Never Changed Who He Was
My son was no different as a child before than he was after each diagnosis.
The diagnoses weren’t what caused his difficulties; they didn’t alter his personality, his strengths, his interests, or the things that made him special.
They provided us with a better set of terms for describing what we were seeing.
They helped us see that certain tasks would require more effort on their part. They provided professionals with more information regarding the kind of support he might need. They also led me to the conclusion that my concerns were well-founded.
There were, in fact, further parts to the puzzle.
Parents Should Be Allowed to Keep Asking
There is a possibility that parents will be concerned that the professionals will think they are being a bit over the top.
We might even question ourselves. Shall we be looking too closely? Are we imagining things? Ought we to just accept the first explanation that is given to us?
I think parents should have the right to ask questions when an explanation isn’t completely clear.
We spend more time with our children than with anyone else, observing their difficulties at home, during everyday routines, and in those instances which might never occur during a brief appointment.
It doesn’t mean that we have all the answers.
That is to say that our observations are important.
The fact that we carry on searching doesn’t show that we are attempting to change our children; it shows that we want to understand them thoroughly so as to give them the support they deserve.
From Searching for Answers to Moving Forward
I am thankful that our search for a diagnosis has now been completed.
I no longer feel that I have to keep searching for the next missing answer; instead, I can now concentrate on helping my son develop his skills, build up his confidence, and become as independent as possible.
There will continue to be difficulties.
Questions will still arise.
The fact that evaluations have been completed does not mean that parenting a child with special needs suddenly becomes easy.
There is a sense of peace in the fact that we have followed the path as far as it was possible for us to go.
If you, as a parent, think that a single diagnosis isn’t sufficient to explain everything, then have the confidence to ask questions.
Note what you observe.
Talk to your child’s doctors, therapists, and teachers.
If you don’t understand something, then ask for more information.
You aren’t searching since you think your child is defective.
You are carrying out the search because you care for your child and want to understand the whole person in front of you.
The initial diagnosis may well be the solution.
The journey has only just started.
Dyspraxia was the first clue for us. It wasn’t until many years later that we got to the stage where we could step back, look at all the things we had learned, and state:
We have the answers we need.
Now, we can move forward.
