The Worry Of Them Growing Up

The Worry Of Them Growing Up

The Worry Of Them Growing Up

 

When J was first diagnosed with autism, and I was at the very beginning of this journey, there was very little ‘real life’ information about. There was the odd leaflet and paragraph in a medical journal, but it was hard to find first hand information from people, as there was no Google, no online forums, no online groups, and as he was so young, he only attended a mainstream nursery, so I didn’t get to meet other parents who were in the same boat as myself.

There were no groups to attend for his age, as the only specialist horse riding group was for ages 8 and up, and as he was 3, five years seemed a long wait for any social input.

The very sparse information I gathered from various sources was always quite daunting and even scaremongering at times.
I’ve mentioned before that the first professional we saw, for a very brief meeting, diagnosed autism within 15 minutes, and handed me a leaflet about it. This leaflet was doom and gloom. The author had nothing positive to say. The basis of it centred around what your child with autism won’t be able to do or achieve:-

 

  • No marriage.
  • No children.
  • No career.
  • No friends.
  • No social life.
  • No real life.

 


It was tough reading, and for such a small leaflet, it crammed in as much negativity as it could.

As we moved soon after, our new GP disagreed with the diagnosis, and said 15 minutes was not sufficient time to make such a sweeping statement.
We ended up attending a weekly session at a centre that had trained staff who interacted and observed J and the other children at this gathering, and over the course of a year, a firm diagnosis was made.
Yes, it was autism, but this time it was based on extensive observations, and not a rushed, brief chit chat.

During this year, I got to meet other parents, with children who had similar difficulties as J.
I was new to this, but it was good to share fears and worries with others who were in the same boat.

One conversation we had was around the worry of when they turn into teenagers and beyond.
The strength, inappropriate behaviours,and violence they could have.
It was discussed about teenage boys masturbating in front of family or in social settings, and how to encourage them to keep it to their bedroom. I dreaded the day this happened.

I shall keep it brief and without too much graphic description, but it is safe to say I have not had anything like this happen. Yes, J does ‘pleasure’ himself, but it is always in his bed, under his cover, and never in front of his brothers, or myself. He has learnt a natural human act that brings pleasure, and has the understanding (from his own thought, not having been told) that it is a private matter, kept away from others. It may be hard for some to understand what I’ve written here, and why I am so blase about it, but J has no interest in finding a partner, and will more than likely remain a virgin, so for him to find a normal, human response for physical pleasure is a good thing in my eyes.

I mentioned the conversation above, about violence too, and had prepared myself for his behaviours to escalate into dreadful incidents of me having to try and restrain him, and being too weak against his strength to do so.
This too has not materialised. Yes he is a tall (he can touch the ceiling without going onto tiptoes), broad shouldered young man, and yes he has strength (he opens bottle lids that I can’t, and carries heavy boxes for me), but he doesn’t hit out, doesn’t hit me or his brothers, doesn’t deliberately break things, or smash up the house.

He isn’t anything like the scenarios I had been filled with fear about.
He is noisy, and as he has such large feet, you can tell what room he is in, just by the thumping of his feet on the floor or staircase, and the echos of Barney the purple dinosaur’s “I love you” tune on a constant loop, emanating from his iPad. These are easy to live with, and I am thankful he is such a laid back young man (yes he does get stressed from certain things, but I do my best to either eliminate certain triggers in the first place, or anticipate and intercept them, and use diversion tactics to minimise the impact). Every day is a learning curve, and I have to keep my eyes and ears alert for any trigger, but it’s worth it to keep him calm and happy (which directly impacts on his brothers too, so keeping a harmonious house keeps everyone happy).

Going back to the doom and gloom leaflet, I can see that J isn’t going to have most of the things they said he wouldn’t, but on the flip side, and keeping with my positive attitude around autism and learning difficulties, he is :-

  • Happy
  • Contented
  • Safe
  • Stress free
  • Loved
  • Respected

These are important and should be celebrated, rather than looking for all the negatives. It can be hard to accept the things your child may not achieve or to live the life you wanted, but look to what they can do, look to what they enjoy, and keep positive that their path may not travel along everyone else’s path, but this is their journey, and their life, and we have to do our best to enrich it, and support them, and most importantly to love and respect them for who they are.

 

 

Epilepsy And Autism

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