Friday, 17 February 2017

When does it stop?


I've been asked on quite a number of occasions by parents who have newly diagnosed children as well as individuals who have very little to do with the Autism world "when does it stop? When do all the endless specialist and therapy appointments cease to exist?"

I would love to say that I have the answer. But the truthful and honest answer is that I don't know. I truly do not have an answer, or a solution in fact, to this question.

What I can tell you is this..........

Since we received L's diagnosis in January last year, the specialist appointments for L have become few and far between. With L we are at the stage of follow up appointments and these are usually six to twelve months apart.

L's therapy has been consolidated into one place. We're no longer having to visit two or three different specialists. All the therapy that he requires is provided during one time slot, on one day a week.

At the beginning of this year we were lucky enough to be provided with a lovely support coordinator through the Autism Association who liaises with all of L's service providers. Our support coordinator does all the leg work for us and comes to us with solutions. It is wonderful. Mind you there is a fee involved but her work behind the scenes is well worth the monetary value.

The Autism Association are, in our eyes anyway, experts in the Autism field and as such we are drawing on their expertise and knowledge to find the best service providers to assist us with helping L, and eventually O.


I can't stress enough the importance of early intervention and keep in mind that early intervention services can come in many different forms. The way that we see it is if we are able to provide L with the therapy now in his early years of life, as he grows older he is already going to be equipped with the skills that he requires to navigate through life.

L's therapy is fairly extensive at present but I would imagine that in the years to come as he better learns how to manage his autism, the therapy may slow down. I simply can not see the therapy ever stopping but I can see that he may not need as much.

The same can be said for O. If we are able to assist her now to gain the skills and knowledge that she so desperately needs to manage her anxiety and social awkwardness, then later in life she is going to be much better equipped. O may still need some therapy, but again fingers crossed not so frequently.

Now in saying all of this, the level and intensity of therapy required really depends on the diagnosis level. I simply can not imagine how much more difficult life would be with a child who is non-verbal. I would imagine that the therapy involved would increase ten fold.

Autism never goes away. It isn't something that can be cured with a  magic pill.

What I have realised is that we are learning to manage life with autism. Life doesn't stop because of an autism diagnosis, we had to adjust. We have had to put other items on our family agenda on hold for an indefinite time period but life hasn't stopped completely.

We may have to constantly make adjustments on this Autism journey and we do this because my little superheroes are worth it.

6 comments:

  1. I get all this. MY daughter has ADHD, and although we've asked over and over again if this is something she can grow out of, or even learn ways work around, this is not the case. It's okay though, we do what is needed as parents and she still leads a completely normal life, except for hearing "calm down" a little more than others.

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  2. I salute you, Momma. Your little superheroes are a blessing, and they are so lucky they have a supermom like you. :)

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  3. Thank you for sharing this! A lot of people don't consider this side of an autism diagnosis.

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  4. I needed to read this. My son is 3 on the 20th and is going in for Autism testing along with a few other things in the fall, once he starts his special school. He was born 16 weeks early and has some moderate to sever delays but they are thinking that he also might be on the autism spectrum as well. I needed to hear that its ok and it does get less wild from a mom who is also going through all this.

    Thanks

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    1. Hugs to you and your little man. It is okay and it does become easier. I'm always here with a friendly ear if you need one xxx

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