What getting a diagnosis means to me 26


Tomorrow see’s our final autism assessment and diagnosis appointment for Hayden. Something I am really struggling to get my head around. On one hand, I have been waiting for this day for the past 3 years, but on the other, I’m scared, really scared.

 

Getting a diagnosis

Don’t get me wrong, I’m not scared because I think I might be told he is fine, and we are just really poor parents.

We know what is coming. There is no doubt about it.

Hayden is on the spectrum. And it is Autism.

But what else will they tell us? What else could he be going through that we haven’t already discovered. There are so many different ‘disorders’ on the spectrum, he could have autism &…., well anything. Or maybe its Asperger’s and we haven’t looked into that much. You know, it’s just really daunting.

The other thing I’m scared about, is how I will take it. Yes, i know it’s coming but does that really prepare you? I really don’t think it does! I have no idea what will be going through my head at 5pm tomorrow once we have received that diagnosis. One doctor telling me, my precious little boy could well suffer with general daily ‘stuff’ for the rest of his life. It is bloody scary!

But all that aside, I need this, he needs this. We, as a family need this diagnosis. Desperately!

I think, in fact I know, the level of support and care for autism sufferers pre-diagnosis varies hugely across the country. I know some parents that have had a wealth of support, guidance and advice whilst waiting on what is one huge waiting list that for some, is years and years. But I also know other parents that have had nothing.

We are somewhere in between. Whilst we, as a family have had no support at all. The school have been amazing at getting him the right support there. But to be totally honest, if they hadn’t have got the support they had, I expect I would have been asked to put him into a specialised school. There is no way he or his class would have survived this first half term without full time 1:1 care, and the school knew that!

Knowing he has amazing 1:1 support at school is helpful, of course. But that doesn’t help us at home.

Ellis’ face has been scratched to pieces, I am still cleaning up at least 2 poo’s a day 4 months after starting potting training, we still have a regular night time visitor that sometimes falls back to sleep, sometimes doesn’t. We still battle every single night getting him to bed any time before 10pm. We still have a little boy that will run into a road without thinking, we still avoid social situations because we don’t know how he will react, my heart still breaks every day when I pick Hayden up from school and he can’t tell me about his day. I can’t be spontaneous and take the boys to the park after school, because it will be expected every day. And the older he gets the more obvious his differences are going to become. Something that kills me inside.

We will still face those problems at 5pm tomorrow. But we won’t be alone.

We will have some support, some guidance, some options. Some hope!

And as a mother to a 5 year old autistic little boy. That is all I need.


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