So, in my last post I talked about the process we went through in regards to how little Mr. had autism diagnosed. In this post, I wanted to follow on from that, so that you have a full picture. At least, the full picture in regards to us.
It was a bit of a whirlwind
So, we went through the process as talked about in the post here (if you’ve not read it yet). You get the diagnosis. So, what happens next you may wonder? Well, it can be a bit of a whirlwind as you get fed so much information to go over. There are so many things to apply for and there are so much help and support to get on the list for.
The great thing about getting a diagnosis is that you get so much support and help that you can apply for. I’m not sure if little Mr. would be where he is today without a lot of this help and support.
The first thing that we did was to get him down for all the specialist groups and help we could. Some of these were part of the NHS CDC and some of the external groups. One, for example, was called Portage. You get assigned a support worker from them who worked with us and little Mr. They visited once every 2 weeks and spent around 2 hours. They gave us help and advice on how to interact with him as well as working with him.
Over the time with them, it was around a year in total, they helped us progress from no play or real interaction with little Mr. to understanding how to communicate to a final point of him interacting and playing with us. We even started PECS with them.
They do only have a limited time though. As they have so many children to work with and only limited staff, you get around just 1 year of their help and support. What a year though.
As well as they, we go entry to courses such as the Early Birds Course. We got some help and support from Speech and Language. Help and support from Sensory experts. He worked with some Music Therapy. We had lots of time with OT. There were most likely some other groups and visits in there that we did.
As I say, it was all a bit of a whirlwind.
Apply for everything
One bit of advice I would give to anyone that is in that position. Apply for everything. Apply for every support group, every group, every specialist you can. Get all that help as its amazing how much it does help.
The other thing to make sure you apply for things such as Disability Living Allowance (DLA). You may think, why would I need something like that? Well, for us it has given us the extra just to buy items for little Mr. The thing you notice is that as soon as the worlds ‘Special Needs’ is added to an item it increases in price. An example is something like the Click Clack car track – that can only be bought in the US (for the good one they use when diagnosing) – and it’s as much to import it as to buy it. Things such as the DLA give you the cash to buy that.
There are also many other things you will have to fork out for and need help with. So, as I say, apply for everything. There are also cards such as the Max card that we applied for and may want to. When you go places, with a diagnosis you can often get extra support or reduced price. This comes in handy again at some themes parks where you can get free express entry to rides – helps some children with ASD can’t-do the waiting game.
Your journey may be different
So, this post is really about our journey and what we did. Your journey may be different. You may require different support or help. However, I hope my message of applying for everything got through. That’s the real thing here – you need to make sure you try everything because you’re not sure what will help and what won’t.
For example, we only tried music therapy to see, and he loved it. It’s not something we would have tough of at first – but as we saw it available, we applied, got into it and it was a great hit.
Try and apply for everything and, hopefully, your journey after the ‘Autism diagnosed’ message will be a happy one. We have fun every day. We have learned that we can still live our life the same and we have all the support we got to thank for that.
I recently came across the following quote
“If you are always trying to be normal, you will never know how amazing you can be.”
― Maya Angelou
This is my new goal in life. Not to conform to be normal, but to be amazing and I hope to inspire you to be amazing too.