Life Without Therapy or, Hell on Earth

funny-mum

Michael has been sick this week and it’s been awful. He was sick enough that he couldn’t do therapy, but not sick enough that he did anything lovely like sleep in or relax in bed. He was active and actually in a pretty good mood most of the time, just totally refused to do anything useful. I even had to stop put his ‘trying new foods’ program on hold because he would just vomit up most things that I was trying to introduce immediately (suspicious? Very.)

What made it worse is that of course my husband and I were sick as well. So we had this awful household of sick, tired, irritated people that just wanted to tear their noses/chests out and leave them on the shelf for a while.

I did get one wonderful, ray of sunshine moment out of it though.

You see ABA therapy is a lifestyle. It is not something that you do for five hours or six hours a day and then turn it off and live your life.

We do ABA therapy from when he wakes up to when he falls asleep.

We use it to feed him breakfast – encouraging him to try new foods, increase the amount of new food he eats, fade the prize etc.

We use it at the playground, to make sure he tries something other than the swing or running backwards and forwards.

We use it to encourage him to play with/somewhere in the vicinity of/other children.

And of course there’s the usual five hours a day six days a week variety.

So this week we gave him lots of time off and it was interesting to see what life may have been like for us without therapy.

I remember when my husband and I first saw the movie ‘Inside Out’ it made us cry. I’m sure that happens to everyone but with us it was an unusual scene – it was the scene with the little girl making happy memories with her parents. She was learning hockey – happy memory. She was playing with her mum – happy memory. So many happy memories and we cried because we didn’t know if Michael would have that.

This was right at the beginning of his therapy so many things were unclear but we were pretty sure that he wouldn’t be spending much time playing outside with us or learning hockey.

What would his ‘happy memories’ be, we wondered? If he ever does remember this age (he’s two, so that’s pretty unlikely) what will he remember? The five hours per day of sitting in a room imitating ‘touch your head?’ The ‘kick ball’ procedure that he wasn’t remotely interested in? Doing the ring stacker over and over?

I knew it was the right thing to do early intervention, I just thought of it as ‘long term happiness over short term misery’.

And after a week of no therapy and total rest I can tell you I was wrong.

It was fun to just be able to go to the park with no pressure. To just go to the plaza and let him run around for as long as he wanted, or let him sit and watch cartoons while eating his favourite food.

But he was so difficult. It wasn’t because he was unwell, because he was his usual sunny self most of the time. He just wasn’t interested in anything and he got so incredibly bored! He didn’t feel like trying new things but when he wasn’t trying new things he would get over the old things very quickly and then have nothing to do.

You know when you put on the TV and your partner doesn’t like anything and starts to change all the channels and you end up hitting them on the head with the remote and staying at your mother’s for a week? This was like that, but all day, every day, for a week!

We’re getting back into therapy slowly again, and I can now see that there will be many happy memories of this period when I look back at it. Probably when Michael hits puberty and I’m really trying to remember a time when I was happy and he liked me.

I will remember the look of pride and huge grin he gets when he makes progress on a new program.

I will remember the laughter when we do ‘giddy up horsey’ or play ‘hide and seek’.

I will remember him lying down in my lap and trying to get me to do ‘Incey Wincey Spider’ by staring at me as hard as he can.

I will remember one of the many times we played ‘aeroplane’ with him and he laughed so hard he nearly fell over.

And I will remember how irritating and bored he was when he stopped doing it for a week, and got to do whatever he wanted.

I will hopefully also remember to build a shrine to all the therapists that have helped me make him so happy. And maybe canonize them. I think you have to do that first.

Thank you guys!

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One comment

  1. Hi Chloe I have read all the articles trust me. Way before I started it. And Michael loves ABA. He’s happy and content, and has actual skills – I have seen children with severe or moderate or whatever you want autism that are now completely happy members of society. They are still autistic but they are happy. I have also seen people that say they are doing ABA and are doing awful things to children – they scream at them, lose their temper, hit them (well I didn’t actually see them doing it of course or I would have done something, but I’ve heard stories). Sounds awful and those people shouldn’t be near children generally. I have also read about these things happening, to a greater extent, in special schools that don’t use ABA, and in normal schools, and outside the school setting.

    This is the only way that my son, and many people like him, will ever be able to sit down and read what you have just written or write something of his own one day. Otherwise he will spend a life locked in his little world staring at his fingers and crying. When we started he cried all the time in therapy. It was awful. He also cried if I left him totally alone, because he got so bored and frustrated but couldn’t stop what he was doing. And he cried if I tried to insert myself occasionally, or actually at any approach I tried. Now he doesn’t. Most of ABA is me trying to find something he really likes and giving it to him as soon as he turns around, or matches an object to a card. He has a ‘GO’ card right next to him on his mat, that he can use any time. He just takes it, gives it to me, and can go anywhere else in the room. There are toys there, he’s not quite up to the stage of playing with them, but he can climb on things and look at his fingers to his heart’s content. And he comes back whenever he wants. Or we do something similar outside, or wherever he wants to be. There are no signs of PTSD. These days if he cries in a session, I get very surprised. Last time it was because he didn’t like the cartoon he was watching – even though he liked it enormously about ten minutes ago. We changed it. Problem solved.

    I’m a mum of course I read everything i can to make myself feel guilty! Who do you take me for? But I have in my entire life disregarded anecdotal evidence, of anything. It is crap. It is not evidence. If the evidence FOR ABA therapy was purely people writing in blogs (like there are about camel’s milk, or gluten free diets, or any of that vitamins rubbish people put into their poor kids) I would ignore it too. I don’t know what your situation is, I don’t know what caused your PTSD, and what about your therapy did it. All I know is all these people can write a blog. They understand sentences and went to school, and a lot of them write very inflamed things about situations that sound nothing like ABA therapy. My son, without it, will not be able to do any of that.

    I love him very much, more than anyone without kids, can possibly imagine. I know when he’s happy and unhappy (he’s pretty easy to read, being two and not having a theory of mind yet.) He gets these huge smiles and laughs like crazy, or he cries. Not rocket science. And he spends most of his time, inside therapy (and outside) being upset to a roughly similar degree – not very much. He might occasionally get frustrated that he doesn’t get a reward in therapy because he is up to a more difficult level in a program. He still needs to be pushed sometimes whether or not it upsets him. He gets just as upset outside therapy when I try to bring him inside when it’s getting late and he wants to stay in the park. As does every other two year old. I doubt their parents are considering that they are traumatising their children by making them come back early, or put on their shoes, or change their nappy.

    I am not making light of what you or other people you know have gone through. But until I see a long-term study with a fairly good sample size and good methods that actually shows specifically ABA therapy does something like that I intend to continue using it. I have seen the other kids in therapy, they are behind clear glass in one of those open plan office things. I doubt you and I will settle that debate here, or anywhere. Opinion is opinion either way, that’s why people DO studies, so that they can have an impartial approach that compares what long term outcomes would result to similar people in different situations. At the moment I can only look at my son, and since i know the moment he is a little uncomfortable, a little unhappy or might potentially want a hug, trust me that i will know if he is being affected badly by something. The fact that he runs towards his therapists, and gives them endless hugs and kisses both before, during, and after therapy, is one potential give away. The fact that he only started noticing his dad after his dad started doing therapy with him, and that he is now his favourite parent (yay!) is another giveaway.

    But you know, you and I will just have to agree to disagree. And we can maybe work together to arrange one of those studies. And then we can settle the debate won’t that be great? Otherwise it’s just people arguing about different things over and over. Pretty useless isn’t it?

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