Change Is the Only Constant

According to Heraclitus of Ephesus (c500 BE), life is flux, everything changes and “no man ever steps in the same river twice” (Wikipedia page). I can attest it is certainly true for this family. During the annual review of Tom’s educational needs provision I was offered a slight possibility that he could move into the special needs unit attached to the school next academic year for some if not all of his lessons. This was what we had originally applied for last year when we were planning his transition from primary school to secondary school but we were told at the time that there were no places for him in the unit. Now there may be a place or at least the possibility of squeezing him in for some lessons.

There are some definite positives to him moving across: a more relaxed environment where he won’t be held to a standard of neurotypical learning that he has to work incredibly hard to maintain; lessons tailored to his needs and his style of learning; peers who perceive the world the same way he does and could be easier to socialise with; greater emphasis on achievements not related solely to learning, with more frequent rewards. It’s the environment I wanted for him originally and one that will be better suited to helping him achieve his potential.

It has become a question of identity

Unfortunately Thomas does not want to go. He wants to be “a mainstream boy”. He is at a critical stage of forming his identity as he matures. Presently he is in mainstream lessons, albeit he attends a booster “foundation group” for English and maths and he has some one-to-one sessions and small group sessions a couple of times a week instead of the regular curriculum lessons on his peers’ timetables. His friends are a mixture of mainstream and special needs friends but he wants to fit in with and socialise with the mainstream children more and is already struggling with that and feeling frustrated. Now school is proposing to put him in the unit where he will be a “special needs boy” in his eyes. No matter that he will be still part of the school, still wearing the same uniform and will likely do some mainstream lessons with his mainstream friends. No matter that his form class won’t change and that he’ll only attend the unit for lessons. To him, he’ll have crossed over from the mainstream world to the world of special needs and difference. He is resisting strongly. I’ve suggested that he visit to see how lessons are conducted so he can see if he would enjoy the atmosphere, I’ve explained that the lessons will be easier for him to follow, that other autistic boys that he knew at primary school are there, that he will get rewards more often, but still he is resisting. It has become a question of identity and I don’t know how far to push this.

I don’t want him to feel “less than” his friends by moving to the unit, I don’t want to undermine his confidence and self esteem but at the same time I’m aware that part of his autism is a strong resistance to change, even change for the better. He can’t see the educational benefits and social benefits of moving; all he can see is the label. As much as we’ve discussed him being autistic, as much as I’ve encouraged him to be himself and be confident in who he is, he is still a tweenager wanting to be like everyone else.

Do I force him to become “special needs”?

School has such an enormous influence over any child’s life and a child with special needs even more so: the quality of education, the friendships, the relationship with teachers and other staff, how bullying and difference is handled. The timing is unfortunate, now that he has settled into the mainstream school. Do I override his wishes for the sake of his potential future and hope that he settles in and comes to terms with his perceived drop in status? Do I force him to become “special needs” because I think he would perform better and be more relaxed and so hopefully happier overall? He already is a special needs student but he doesn’t see it that way thanks to the work his primary and secondary schools have put into integrating him into school life.

This is something I will have to decide over this last term of the school year. I’ll keep you updated.

I made a video!

In other news, I made a video! I have been contacted by an organisation preparing a course to be launched this month for parents of children who have recently received a diagnosis of autism. I was asked to produce a two minute video on “having a positive mindset” for the course. Being theΒ Chatty Cathy that I am, I couldn’t get it shorter than three minutes!

This blog page doesn’t support video currently so I can’t post it here but this is the transcript:

“Hi, I’m Vicki. My son Thomas is eleven years old and he was diagnosed with high functioning autism at five and a half. Thomas loves acting, re-enacting scenes from DVDs and TV shows, with props – usually hats – and he likes to rope us into whatever he’s doing. He also likes to set up displays of his toys and he will sit and admire them for hours, inspecting them minutely. His latest fad is to watch people conducting pranks on the public on YouTube and then conducting pranks on us, his poor unsuspecting parents, going into his room and giggling behind his bedroom door until we find whatever it is he’s done. They’re usually harmless and he gets a great deal of joy out of them. And so do we; we enjoy seeing his reaction.

The thing is, we are a family and we do family stuff. We go on holiday to the coast, we go on day trips out, we watch DVDs together, popcorn gets everywhere; it’s just ordinary family life, just with autism as part of the mix. It may feel when you first get a diagnosis that you’re facing this huge mountain to climb but the fact is you will climb it. You will climb it together as a family. You will learn to dip into reserves of patience and understanding that you never knew you had and you will learn to see the world through your child’s eyes in a way you’ve never seen it before.

Each new stage brings new challenges and sometimes it is very hard, I won’t lie. I’ve found with Thomas that the things he does usually resolve themselves in time although he is still an incredibly picky eater. You pick your battles. What’s important is that your child is happy and healthy and that is it; that they feel loved and they feel comfortable and that your home is a place of safety and security and love. Everything else is a bonus. I’ve found now that Thomas, as he is approaching teenagehood, he wants to be a normal boy like everybody else. He knows he’s autistic; we’ve discussed it with him and when he was younger he didn’t really care because he just wanted to do what he wanted to do. But now he is beginning to understand the effects of peer pressure. So this, for us, is a new challenge. We’ve got used to dealing with his autism when he was a small boy, then as he got older; now he is approaching teenagehood and everything is going to change.

We will learn about it as he does and we will support him because we’re a family and that’s what families do.”

Being a person who prefers to express myself through the written word, talking to camera was painful and cringe-makingly difficult. It took two hours to record a version that didn’t include me stumbling over my words, forgetting my lines, not looking weird in some way, not looking dead-eyed and robotic as I recited the same thing for the twentieth time and so on. Two hours! Two hours of pacing around my room with frustration, jumping up and down and psyching myself up for my “piece to camera”. It gives me new respect for Thomas’ ability to riff with ease when he makes his game review videos. He certainly doesn’t get his acting skills from me!

We are now on our Easter school holidays for a fortnight (two weeks for those of you unfamiliar with this English term). I will be back soon with further news of our exploits, including me getting an actual social life and Tom conducting endless pranks upon us.

Until next time, adventurers, remember to go with the flow. Ta ra!


2 thoughts on “Change Is the Only Constant

Add yours

  1. So many times I’ve wanted to throttle someone in the school system! Ugh! It seems like once everything is finally settled into a routine, they have to change something. But, then again, that’s life. You are in a tough spot with Lord Thomas. Those teen years… I barely survived my daughters and I’m not looking forward to King Ben’s journey. Of course Ben always has, and probably always will be in special needs since he’s considered “severe” (hate that word). Peer groups are THE most important thing to most teens. I wish you much luckπŸ€πŸ€πŸ€πŸ€πŸ€


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