I think the hardest decision you make as an autism parent is how much to push. You make this decision not once but hundreds of times a day. You make it both now and when planning activities/outings for the future. If we push, we may have to deal with very difficult behaviour now. If we don’t push, we get relative peace (for now). But in the long run our lives may be much harder and more rigid. And our children may be less able to live independent lives.
There are so many mundane but very difficult decisions in a day. Do I accept that my child will never eat a variety of foods? If I push, I will have fights, meltdowns, and maybe ruin their relationship even with the food they do eat. For months. If I don’t push I may have peace and quiet now but there may be other (health) consequences in the long term. Not to mention tummy issues now.
Do I push him to wear a hat, even though he hates it? Do I put it back on the 900 times necessary and live through the 400 tantrums before this becomes consistent? Can I push him to take his own shoes off, to put his food on the fork, to change his own cartoon, to give me a PECS card for every item he requests, to hold my hand every time we walk along the street? Or spend a bit more time this week next to his cousins than he did last week? When I am at home do I sit down and have my lunch once he’s eaten or do I take him out straight away and chase him up and down the playground? Do I push him on the swing for half an hour or encourage him to go on the slide first?
And all of that goes on top of all the other stuff I do. The cooking, cleaning, laundry, and trying to figure out what Michael wants. Yesterday Michael screamed for two hours straight. From 4:45-7:00 when my husband carried him (also screaming) to bed, he was almost in a continuous tantrum. I am still not sure over what. Maybe he was just tired – he was fine this morning. But in those circumstances I chose to ‘rest’ all other demands and just concentrate on not reinforcing bad behaviour and on reinforcing good behaviour. Giving him a bit of what he wanted every time he calmed down by himself. The problem of course was that I didn’t know what he wanted so finding an appropriate reinforcer was really hard. This is why pushing is not always top of the agenda for an autism parent.
Michael has therapy for three hours this morning, where they will address many of his goals. Then the therapist will come out of the room, have lunch, go to uni, study, see her friends, and have a good night’s sleep. I will look after him for the rest of the day – from 11:15 to 6:45 when my husband gets home, I will be doing this alone.
There are always thousands of things I could be working on with Michael. This is why we have therapists coming and going for (theoretically) 29 hours a week, going up to 35 hours in a couple of weeks. Everything we do with him is on top of that.
But just like my therapists, I have to prioritise. I choose a few behaviours to work on (usually the main therapy goals, like PECS, have precedence) and work on consistently reinforcing those. I find it’s not about how much pushing you do. It’s about how consistent you are about the particular behaviours you are pushing in.
Pushing, but in a loving, consistently reinforced way, is the most important thing a parent can do for their children. Whether or not they are autistic. Because pushing works. I can change his dietary patterns (and I have), I can teach him to use PECS (and he is making great progress in it), and one day I can teach him to wear a hat. The important thing is for me to know my own limitations (how many goals i can consistently reinforce, given how tired I am that week and how Michael is feeling that day). There are weeks, now that I am pregnant and often exhausted, when I just choose one or two. But those two (this week I chose PECS and hand holding) I will always work on no matter what.
And I need to emphasise to all the other parents out there, pushing or resting are both legitimate choices. I never feel guilty for not doing any PECS or not making him feed himself if I know this is one day I just need to survive. I just make sure I decide to do that straight away, and not after a tantrum.
But if you can push, it’s worth it. Don’t give up. When we started Michael’s food program and he was on bread and milk, we presented his first ‘new’ food 900 times. Ten times a day over three months. Before he really could be said to ‘eat’ it. We have done probably thousands of PECS trials before he really started to ‘get’ it. But it’s there now. It will work. Even on a really bad day, I keep that in mind. We rest. We sleep. And then we carry on.