I was recently looking at Michael’s schedule for this year. At the time I was reflecting on how scary it would look to anyone else. And yet an intensive, evidence based early intervention is all that I have to help me teach my son important life skills. We will do whatever it takes. But we will make it fun as much as we can, as well.
Michael’s schedule goes like this. He wakes up at (I’m being optimistic here) 5am. He has breakfast and goes to the park (yes at 6am he goes to the park. That is our life). After spending roughly an hour at the park he comes home and does a two or three-hour therapy session. Every morning. Including weekends. Unless he’s unwell or has a family event on, he does therapy every single day.
Then he has lunch, has a nap, and does another two or three hours of therapy. Again, that is nearly every single day. Then dinner, another walk to the park, bath and bedtime.
He gets one afternoon off a week to play with his cousins. One morning a week instead of therapy he will be going to playgroup (which includes OT, music therapy, and some group play time). One other morning he will be going for his occupational therapy session which may be combined with speech therapy depending on what works better for him.
If you count up how many formal hours of therapy he has scheduled (and I count playgroup, because it is an intensive early intervention playgroup) it is close to 40 hours.
This doesn’t show the full story of course. In one sense, it overestimates the real amount of hours he gets because therapists are often away, on holiday, or unwell. If they are, my husband and I step in or we often instead take him out to try a new experience. Last time we took him to a trampoline park. Next time we may try Livvy’s Place – an inclusive playground in Five Dock. It might be the pool or the beach, or any other place I can think of that Michael might enjoy. Other times Michael has a cold, or sleeps badly, or is unwell. In those cases therapy is also modified or just cancelled.
We Do Therapy All The Time
In other ways this count underestimates the amount of therapy he actually gets. For example, this morning before his ‘formal therapy’ Michael wanted to go for a run outside. So I took him for a walk around the block. He loves doing this, and we spent a lot of time practicing him holding my hand when we were on a busy street. Michael has a tendency to dash off and always into oncoming traffic so that is something we are working on. It’s not ‘formal therapy’ but it is still therapy.
When we came back from our walk, I asked him to take his own shoes off and helped him do it by breaking it down into smaller steps. Then rewarded him. Also therapy.
Then when he was having breakfast he wanted me to change his cartoons, and I made him ‘ask’ for it via PECS. Also therapy.
We do ‘therapy’ with Michael all the time because we are teaching him important life skills all the time. And every other parent does the same things we do. The difference is that they might have to show their kids a few times and that’s it. Michael’s imitation skills aren’t at that level yet so we have to break every action in to at least three components, teach each one by repeating it and prompting it over a thousand times (we counted!), reward each attempt no matter how small, and then move on. And keep it up, because if we leave it for a week he has forgotten it.
Good Therapy Doesn’t Feel Like Therapy
And here’s the main thing. Michael LIKES therapy. He enjoys learning life skills. And the reason is that most of the time he has no idea he is doing therapy. Often if you watched us you wouldn’t have any idea he is doing therapy either.
So how do we make therapy fun while keeping it effective?
1. Therapy Happens Where Michael Wants To Be
Well, one important thing is the location. We always try to do therapy in the part of the house/backyard/park that Michael wants to be. It might be in the bedroom jumping on the beds. Sometimes it’s on his high chair, the beanbag, the backyard, or when we’re at the park. Often it is in his therapy room because he likes it in there. I always tell my therapists that they have the run of the house and there are so many programs they could be working on, that they can just work on what fits his current location best.
2. Regular Breaks Are Important
Another thing we use is regular breaks. Michael has a GO card that he can use any time to leave his ‘therapy mat’ or whatever ‘location’ we are doing it in. It is on the PECS book that is next to him at all times. And we never ‘bring him’ back in, he comes back to his mat when he wants to. We do have all the most fun toys/food/iPad on the mat and if he wants them he has to come back. But there are other toys around the room and if he wants to run backwards and forwards he can.
3. Use Rewards
Our rewards are of course the main thing that makes therapy fun. We look at what Michael wants and for three hours we constantly reevaluate. It might be a snack, it might be his iPad, or a piggyback/bounce on his yoga ball/time on the swing. Whatever it is, we use it A LOT!
We also follow Michael as much as we can. If he shows an interest in puzzles, I get him so many puzzles they don’t fit under the house anymore. What kind of toys does he like/show-a-very-slight-interest-in? He has 1,000 of EVERYTHING. We rotate things, try to use sensory toys, light up toys, musical toys. I have them sorted into categories in his therapy room. If he looks like he is in the mood to sit down and do quiet play, we do matching or read books. If he wants to run around, we get him to travel for PECS.
4. Don’t Do Too Many Hard Programs Together
Another good technique is picking the programs carefully. My technique is to go ‘easy’, ‘hard’, ‘easy’, ‘hard’. So he’s always getting pushed, but never does something frustrating for long. If I know something is hard for him at the moment, I will only do it two or three times and move on to something easy. Then I might come back to it in an hour for another two or three times. Sometimes if he is in a ‘good’ mood I will do a few ‘harder’ programs, and if he isn’t feeling it I will do lots of easy ones. I also modify the rewards to match how hard something was for him to do, not necessarily how successful he was at doing it.
5. Jump In With Help Sooner For Harder Programs
I will also jump in with some help much sooner with something that he finds frustrating and difficult. As a rule I try to leave Michael to figure things out for himself, even if it takes a while. Of course this only works for toys once he knows how to physically do it, so first he has to be taught through prompting and repetition then eventually through ‘figuring it out’. But some toys he’s happy to ‘figure out’ for a minute without getting upset, and others he cries after five seconds. I know what toys/programs do this ahead of time though and jump in with a prompt much sooner. I will then of course fade these prompts over time like with everything else, but it’s at Michael’s pace.
6. Respect the Sensory Needs
Another technique we use (which is pretty obvious probably) is to take care of the sensory needs. Michael is a sensory seeker. This means we help him seek the sensations he is looking for. This flows naturally from the ‘follow Michael where he wants to go’ technique. If he wants to run, he runs. If he needs to jump or bounce we do that. Other times I give him foot massages (seriously) or calming deep hugs. We are always trying new sensory toys. We are also starting occupational therapy with him soon to see if we can get some help with this bit, mostly because Michael doesn’t actually know how to regulate himself yet and therefore following his lead sometimes doesn’t help.
7. Always Re Evaluate Your Rewards
This one is a bit technical so for non ABA therapists, you can zone out. But with Michael, quite recently, we noticed that he started crying a lot during therapy. And it wasn’t during the ‘demand’ bit, it was during the ‘reward’ bit. The reason was that he didn’t want the reward we were giving him and he was (rightly) annoyed at us for making him work so hard and then giving him this rubbish.
So I emphasise. Re evaluate your reinforcers every single time. Every time. What I do when Michael starts to get restless (every time!!) is to offer him the things I think he wants and make him point to the one he actually wants. Then if it’s something like iPad, I put his PECS book in front of him with the ‘I Need Help Card’. I do this because most of the time he doesn’t want the cartoon I put on for him. Even if it’s a cartoon he loved five minutes ago. Thirty seconds ago! His way of communicating that is to give me his ‘I Need Help’ card until I find the one that he really wants. Then once I am sure that he is in fact working for something that he wants, then I can make my demands.
Other people may have more accurate ways of telling. Michael can’t discriminate pictures very well so I can’t just put ‘pictures’ of his favourite cartoons on the PECS book but that is a way to do it. He also changes his mind about what he wants fifty times every five minutes. Other children are not like this and you will know your child. But really the main aim is to always make sure that your rewards are worth working for.
8. Don’t Ignore the Crying
Let me be clear with what I don’t mean here. I don’t mean that you ‘reward’ crying by giving your child what they want every time they do so. I don’t mean ‘oh he’s crying because he doesn’t want to look at books, I’ll do something else instead’.
But do look at WHY. If you’re an ABA therapist, you’ll be writing everything down anyway and then discussing it. For other people though, the best thing is to make sure you always try to figure out why are they crying? Is it at a particular skill? Maybe it needs to be broken down more, taught more slowly, or you need to help more (while always fading of course).
Is it at the reward? See step 7 above. Remember ABA therapy is not just about not rewarding ‘bad’ behaviour, but about facilitating good behaviour. And the behaviour that is considered ‘acceptable’ should be very much tailored to what the particular little one can realistically do. It needs to be at their level.
Does the child know what the ‘right’ way to communicate is, and do they have easy access to it? The entire POINT of ignoring crying is to encourage a little one to communicate in an appropriate way. Something like giving you a PECS card, pointing, maybe talking, whatever they are currently up to. It is not about breaking your child’s spirit.
Always Keep The End Goal In Mind
The thing that keeps me going through all this therapy is the main aim. My aim is to help my son get to a stage where he doesn’t need me. That is in fact what all parents are (or should be) trying to do. Where he is completely independent and has some important relationship/s in his life. Preferably can catch the bus by himself, dress himself, and buy his many girlfriends some ice cream.
He doesn’t have to choose to use all the skills I am teaching him. Maybe his girlfriends will be buying him the ice cream. (I’m partial to ice cream myself so…) Maybe he won’t want any girlfriends, and will only ever have one close friend. It should be because he chooses to do so though, not because he doesn’t have the skills to get to where he wants to be.
Whether this is all achievable is completely unknown at this stage. Some things he may never learn. Others might come by themselves without any therapy. About half of the progress he has made this year has been ‘natural’ and unprompted, and may he have many more such breakthroughs. But if he gets twice as far with therapy as he does without, I will be very happy.