Pages

Friday 18 October 2019

The Diagnosis that we were waiting for!


5 years ago we decided to withdraw William from school and home educate him.

It wasn't a decision that either of us took lightly. We thought deeply about his wellbeing and decided it would be for the best.

William didn't take to school. He was a stereotypical child who would do better outside of a schooled environment.

When he joined school in Reception he was top in the class academically. However, one whole academic year passes and everything had changed.
He had made no progress academically in that year and was subsequently near the bottom of the class, he was showing aggressive tendencies around other children and was screaming and fighting us every morning on the way to school.

Ultimately, the child in front of us was not the boy that his mum and I knew.


As a Teacher and qualified in child development and psychology  as well as knowing our son’s true character, I knew there was an underlying cause outside of behavioural issues.

William didn't like being touched, loud noises upset him, didn’t like being in crowds, struggled with social communication and seemed to "snap" when things changed and went wrong.

He also seemed to struggle physically; he was the slowest runner, was short for his age, clumsy and found balancing difficult.

These were the main signs among little every day things that stood out.

For me it yelled ASD and possibly, like me, FSHD.

The clear decision was to see if we can get a diagnosis.

But, here lies the problem: He was home schooled.

We saw the Paediatrician twice. Each time we presented the child that had these signs. Yet, each time they dismissed ASD because he could make eye contact. They deemed everything else as "neglect and behavioural issues due to being home schooled".

I can tell you that this was incredibly frustrating and upsetting.

As his parents we knew that wasn't the case but how do you convince someone who has clear prejudices against Home Ed and missing some obvious signs?

We, admittedly, gave up for a bit and decided to carry on home educating him the best way we could.
Yet, we still had the physical traits.

He showed enough markers for concern and subsequently we were able to get him tested for FSH.

A few months went by and we were told that it was all clear and he does not have it.

This gave us a confusing situation.

We knew he showed physical markers of something. We knew he showed them enough to warrant the doctor and specialist to pursue a blood test but it wasn't FSH. However, we were incredibly happy that he hasn't got the rubbish debilitating condition.

The only option to get a diagnosis was to put him in school, let him kick off, let the school record and then seek a diagnosis with the possibly of breaking William further and him becoming a school refuser.

So where do we go from there?

Well luckily the Paediatrician situation changed and we could have another shot at trying to work out what the "X factor” was for William.

We had the appointment and we were right.

This entire time all the things we had thought were diagnosed by this Paediatrician in one way or another.

He was diagnosed as High Functioning ASD. His eye contact was spotted as a subtle lie. He looks in the eye direction but doesn’t actually make eye contact. Subsequently masking that he struggles in that social situation.

Along with ASD he was diagnosed with Hypermobility. It wasn't FSH but the symptoms are and can be similar.

He was also diagnosed with some behavioural difficulties as well as learning difficulties; especially showing educational barriers within Maths.

We sat there relieved. Relief that we were believed. Relief that we, as his parents, were right this entire time. Relief that we actually did know our child as well as we thought we did.

We expressed the previous Paediatrician comments and this doctor opposed that concept.
He said "Home educating William was the best thing you could do". We gave him a tailor made education in a 1:1 set up which a school wouldn't have been able to do for a long time. The gap in getting William the help he would need would subsequently have been made larger in a school setting; something that home education corrected.

It's taken us 5 years to get this diagnosis. 5 years where I've questioned myself and what I know or feel is going on. Yet, we've been shown that we have given him everything he needs.

Many might find that all these conditions hard to get your head around but I am happy. We have the diagnosis we wanted, the validation that we needed and a plan going forward to best support our son.
All we need to do is wait for confirmation from the Paediatrician. Then we need to get the ECHP for him. He will need an educational assessment as well as an OT assessment but once those things have happens we can get him the correct help he needs and look at how we can help William going forward. It’s still a journey ahead but it’s  start.

No comments:

Post a Comment