The Difficulty In Planning With An ASD Child

I find planning Michael’s future very hard. We have so little idea of what he will be capable of in the future. But even among the constant chaos, it’s important to find time to relax and just go with the flow.

“I never get to relax,” a special needs mum told me recently. “I’m always stressing about the future. Or trying not to think about it. I’m planning for every eventuality. And I never know if I’m doing too much or not enough.”

It’s a story I have heard from many people, since my son’s ASD diagnosis. Apparently special needs parents are under the same amount of stress as soldiers in combat. I read it somewhere so it must be true. And I am totally like that too. But I have been working on allowing myself to relax lately, and this is why you should too.

We Can’t Make Certain Plans

We can’t relax for many reasons. One is that we can’t plan ahead with certainty so we make up ten different plans for ten different situations.

We don’t know what our child’s abilities and needs will be even twelve months into the future, let alone twelve years.

Other children’s parents get general guidelines. Milestones that they can count on to generally come at a kind of sort of similar time. If they start baby swim classes from six months old, swimming 50m by five years old is probable. Learning to follow two step directions by the time they are 24 months old, learning to read simple books around age 6. Start school at five, finish age 17, then on to tertiary or an apprenticeship.

Putting aside unforeseen events, or a GAP year, their lives are pretty predictable.

Juggling While Blindfolded

If you’re a special needs parent, depending on how these special needs impact on your child, these shadow plans are gone. Planning Michael’s future to me is like juggling knives while blindfolded and hopping on one foot.

Let me tell you for an obsessive planner like myself, this has been, to put it mildly, difficult. My criteria are so different now for everything – sports, other activities, are all out the window as we complete therapy. He needs one on one support in everything he does. And don’t even get me started on schools!

The School Conundrum

I’ve got him in a really private one, a kind of private one (private but not as expensive), and as soon as I can he’s going on a waiting list for a special one as well. I have taken him to playgroups and attended seminars all in the search for the perfect learning environment. I am also asking everyone I can about every public school in the area, although I suspect that may not be an option for us. And I know that no matter how hard I work, or how hard I plan – he will still have huge challenges his entire life.

I will have to plan not only for his school, like all parents do. There is also the question of what I am aiming for – is it an apprenticeship or sport? Or should I just concentrate on basic life skills, like catching a bus or going shopping?

Weighing Up The Options

Every question I weigh up five times a day and change my mind every time. There are many factors in favour of a special school. They will be able to provide the one on one support he needs. A good special school will include OT, speech, ABA, and it is very possible he would learn academic thing like reading and writing faster there. On the other hand, my child is extremely sociable. He loves spending time around other children. At an ABA based school, he will mostly be around other children that have autism and who for the most part in my experience ignore him completely.

At a mainstream school, as long as he can have sufficient support, he might still be able to learn and might have the social environment he really enjoys. He will have a better shot at graduating and joining the workforce, if that is something he is capable of doing. Or learning to play a sport, because he definitely has a good build for rugby, as well as great sprinting skills, and boundless energy. Yet he might also disturb the learning of the other students and may never be able to concentrate sufficiently to learn himself.

What complicates all of this further is that I have no idea what Michael will be capable of when he goes to school, and how that will change throughout his experiences while there. He surprises me every day. One day he is struggling with a shape sorter and can only put one shape in. Sometimes that can last for three months. Then suddenly he can do it, and not only that one – but any other shape sorter I can find.

Our Decisions Can Make a Huge Long Term Difference

And why do I care? The reason all autism parents are so stressed out about therapies and schools is because for our children it WILL MAKE A BIG DIFFERENCE. To make it clear – usually it doesn’t. For most children, they do not need as much as society tells us they do. There are twin studies and adoption studies that show over and over that the kids will be alright. Whether you put them into public or private school, whether you take them to five different kinds of swimming lessons every week or send them to daycare, whether you work full-time or not. While some approaches will involve more fun and others involve more skills, in the long run most kids will be ok.

This is not so with special needs parenting. The decisions we make for our kids can and do impact them for life. Whether we find the right approach for our child, and teach them the way that they learn, or if we fail to do so will affect them hugely. It can be the difference between them growing into young adults that can’t work, can’t volunteer, can’t cook their own dinner (ok so that’s most young adults) or go to the grocery store for themselves. Or someone that can do all of these things. Most importantly, it can be the difference between them being able to have meaningful, deep relationships (whether it’s with fifty people or two) or not.

There are no guarantees

Sadly, sometimes we can make all the ‘right’ decisions or just not have the resources to make them, and  although we try our best, our child still ends up in a bad place. At least for a time. That at least is something we have in common with all other parents. Autism parenting can often feel like you’re swimming as hard as you can just to stay in place, like salmon swimming upstream. But we know that all the work we put in, will come back to us one day. That is why I am always planning, always hoping, and even if I rest I don’t give up.

So far I have three different plans for three different scenarios. Scenario one: he has high support needs all his life. I have just the special school picked for that. Scenario two: he has fairly high support needs but does not need to be in a 1:1 environment the entire time: I have the right school picked for that as well. And I have a few for scenario 3: the unlikely but always welcome scenario where he magically moves down to having low support needs and angels dance and sing.

All of these thoughts pass through my mind every day, usually around 11 when I should be asleep because my child will be up at five.

The Need To Relax

The one thing I have learned this year is that all of us (me included) just need to relax sometimes. Therapy is important of course (see above). And these few years of early intervention we have are the key. But we also need to chill sometimes.

So many parents of ASD children are stressed all the time. They wonder if they are doing enough, they wonder if they are doing too much. And always we compare ourselves to other ASD parents.

This is a mistake – although admittedly a mistake most of us can’t do much about. We are doing enough. Every day. Even the days that we let the kids sit in front of the iPad while we binge on Netflix. Yes, even those days. Because the most important thing is that we are ok ourselves, otherwise they’re going to have a deep and meaningful relationship with a walking shell of a human being.

The Difference Between Resting and Giving Up

The important thing is to distinguish between giving up or needing a rest.

Giving up is when you decide that your child is irrevocably broken, you can’t do a thing about it, and just concentrate on your other children/rest of your life. Rest is when you shut your brain down for half an hour while watching a trashy TV show.

Here’s a newsflash. Everyone rests. Ever super mum you see on instagram making flashcards for her child at 12am does rest sometimes. She just might not post about it, because a video of her eating mini m&ms in her yoga pants is not part of the image. But we all do it. We read books that aren’t related to autism sometimes (I’m a big fan of Terry Pratchett). We go out with our partners or our friends. Some of us are lucky enough to have great supportive partners/families/respite care workers/babysitters that help us when we can’t handle our life alone.

Rest is necessary for basic functioning. I have days when I just take Michael’s shoes off for him, feed him dinner without making him carry the fork himself, and let him run backwards and forwards while banging his shoes for an hour if he wants. Do I make sure he gets about 30 hours a week of therapy? Yes I do. Do I stress and plan and worry about how he’s ever going to learn to drive? All the time. But once I’ve made all the plans that I can realistically do anything about, I stop.

I have spent an hour today watching Doctor Who and I dare all the other parents reading this to do the same. And take the time out from your planning to relax, just for a while.

P.S. It doesn’t have to be Doctor Who. Gilmore Girls is also really good.

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