When I started Michael at his therapy centre, I went to a wonderful talk by a woman that was at the time its director. She also had an autistic son, but hers was fully grown and graduated from high school.
She talked a lot about the importance of early intervention and therapy hours. But she also said something equally important. She talked about the need for all of us to relax. The kids will be alright.
Then she told a story about how she knows one set of new parents that were actually Skyping all their son’s sessions at the centre. And um, well, that was US. Guilty as charged. For the first two months of my son’s therapy, I watched all his therapy sessions from the waiting room via Skype. Yep we were the poster children for unrelaxed, an example to other parents.
I was skyping his sessions so that I could learn to do ABA myself and start increasing his hours while we were still looking for a junior therapist. The reason I couldn’t sit in them and be trained officially at this point (I did this about six months later) is that his senior therapist was still pairing and learning what he was like herself, so my presence would have distracted him.
Benefits and Price of Not Being Relaxed
There are benefits to being unrelaxed. If I had been a chilled parent, my child wouldn’t have been diagnosed in four weeks, at the age of twenty months. If I had been a chilled parent, he would not have been doing ABA therapy. Nobody throughout the diagnosis process even mentioned it to me. It was only through reading lots of research papers that I knew a thing about it, and was able to find a provider quickly. If I was a chilled parent, my child would just be going to OT and speech once a fortnight. Which means his skill level now would be likely half of what it is, if we’re lucky.
But being unrelaxed has a serious price as well. It means you are always thinking of what else you could be doing, and never enjoying the moment. It means that you can be very unproductive. Your child doesn’t need you to change your mind fifty times about their future school, when they are two years old. It doesn’t help. And it can put you in danger of a serious mental illness.
Why We Find It Hard To Relax
I know I’m not the only parent that is like this. The reason many of us can’t relax is three fold. 1) We often blame ourselves for our child’s autism. 2) we believe (especially in the early days) that the autism will affect every aspect of our and our kids’ lives. 3) we believe that this ‘tragedy’ will last forever and nothing can ever make it better. Unless we spend every waking minute right now addressing every issue that exists.
All three of these things are wrong. And once we realize this, relaxation is just fifteen minutes of Netflix away.
Why the voice in our head is wrong
- it is not our fault. Genetics is a lottery. That means any of us or our children could get any combination.
- Autism will not affect every aspect of our lives unless we let it. I have found many meaningful things in life that are not about autism. And for Michael, most of his life is not about autism. It is about being a three year old. And even if I looked at it as something that did affect every aspect of his life, it doesn’t affect every aspect negatively. Some effects are good, some are bad. His life overall is perfectly happy. I have no idea what aspects of his personality are autistic, and which ones aren’t. He is just Michael. And he is just wonderful.
- Autism is not a tragedy. Some of its co-morbid conditions and its aspects can be tragedies. Things like severe epilepsy are pretty tragic. The way our son was at the age of 18 months was tragic. He was unhappy, frustrated, unable to communicate his needs and unable to eat a proper diet which led to gastrointestinal problems. But these days he’s a happy little toddler that is absolutely certain he is the centre of everyone’s universe and will get a big surprise about that any day now.
How I Turned Parenting Into An Extreme Sport
Ever since Mikie was born, I have been very unrelaxed. I turned ‘parenting’ into an extreme sport. Now I don’t regret this at all. I had to. It was what my child needed. When he was a baby, he needed me to sing to him, read to him, play with him and keep him in constant motion. Without this he may not have the pretty high level of social skills that he has today. Without the work I put in, he may not have been as happy, as securely attached, and as ready to start a 30-hour a week therapy schedule as he is.
And in many ways I didn’t have a choice. If I relaxed, Michael cried. I couldn’t go to a coffee shop and chat to a friend. Or put him in a pram next to me while I studied for my masters. If I stopped reading to him, playing with him, and moving him, he cried.
So I read for an hour and lost my voice. I took him for endless walks in busy shops. He never sat still anywhere ever. He never missed a nap, even if it meant I rocked him for two hours straight. Many days I would spend six hours just getting him to sleep. Then back to sleep in fifteen minutes when he woke up from a slight sound. And again. And again. Yet everyone (unhelpfully) told me that I parented this way because he was my first child, that I would be more chilled with my second. But it wasn’t that. I am a very lazy person. I did it because I was a special needs parent even if I didn’t know it.
Anything that Broke the Equilibrium Would Break Me
All this work meant that I was walking a fine line between keeping my child happy and having a nervous breakdown myself. Me! I had done my entire HSC year with a very high result and almost no stress at all. I had managed to get through one of the most challenging degrees in Australia, while working two jobs and volunteering at a domestic violence service. And all that actually made me really happy, I thrive in high-pressure environments. Working full time after that while beginning my masters was a walk in the park. I was just not an anxious person.
Yet here my baby actually reduced me to tears. If anything changed the equilibrium. A cold, an exam for my masters, a missed nap. If any of these things happened, I would completely break down.
And I had my reasons. A cold meant a week of rocking Michael all night in a slightly raised pram because if I stopped for a minute he would wake up. An exam meant weeks and weeks of having to study every time Michael was asleep, which meant doing all my chores when he was awake or when my husband had him. A missed nap meant a baby that cried for no reason for a week. He got so tired from a too short nap that he would bang his head against a window.
It is Not Helpful To Just Tell Others to ‘Chill’
I can guarantee you that none of the people that told me to chill, had ever had to deal with any of these things. If their baby caught a cold, he would be up every two hours. Boo hoo. They could do chores while their kid played quietly in a playpen. And if their baby missed a nap, he would just sleep longer at night. None of this ever happened for me.
It all came to a head one weekend when I cried while telling my husband that I got 68 for an essay for my masters. I think that was the first time I had cried in front of someone else since…probably my mother’s funeral. And it wasn’t really about the 68 (although I was working with a distinction average and was NOT HAPPY). To be clear I have never cried about a mark in my life. And 68 was very far from my lowest ever mark. It was about living an unhealthy life.
Learning From My Husband
It was my husband that snapped me out of it. He put an end to the unrealistic screen time limits I had set our son. My husband made me accept that if I needed to hire more therapists, I should do that. That if I needed to cook dinner less often and get takeout, I should do that. He said I should have time every day to do something that made me happy and completely relaxed. Men are very good at these things. That’s why we should learn from them.
And it’s stuck with me. Now that Michael is older and the therapy has been working so well, I have been relaxing. I think the reason that autism parents get so obsessed with doing more and more, is that they imagine a different child inside this one. That the more digging they do, especially at an early age, the more they will help this other child come out. Otherwise they are worried he/she will remain buried forever.
Early Intervention is Super Important – but so are you
But this is all both wrong and ultimately destructive. Yes, early intervention is important. It may mean your child’s IQ is 15 points higher in the long run. That they learn how to drive seven years earlier, that they can cook for themselves, that they have a best friend. It is worth the effort to get to those hours. I put in a lot of time to make sure they happen. This is why we advocate for more support. Yes our child needs 30 hours a week of therapy. But if we provide all of it ourselves, our child may not have any parents left.
No matter what that instagram account you follow looks like, nobody is doing it all alone all the time. And nobody expects you to do it constantly.
Parenting even without therapy is exhausting
Most parents find looking after little kids exhausting. Just doing the ‘bare minimum’ – getting them places, keeping them fed, warm, more or less clean, and out of obvious danger, is a huge effort. All of these things can be even harder if you’re an autism parent. Especially if you have more than one child.
So I started to keep track of my own sleeping and eating habits the same as Michael’s. I made sure I wasn’t hungry or tired before I started any chores. I only did the chores that actually needed doing for health/hygiene/allergy reasons not the ones that are simply there for appearances. For example, the kitchen bench top needs to be clean so we don’t all get gastro. But the candles don’t have to be perfectly arranged from biggest to smallest. And if I felt my stress levels rise, I prioritized leisure. Even if that meant Michael had to entertain himself for half an hour.
On Setting Ourselves Limits
We have to set limits for ourselves. Make ourselves relax until we learn how to do it again. Stop just reading autism blogs and autism books. Except mine. Mine is great. Watch Gilmore Girls or Game of Thrones. Get Netflix. We all need to stop stressing about things we have no control over and stop planning things that aren’t going to happen for at least three years. Long-term planning for an autistic child is twelve months. Yes I’m talking to myself here. I bet I’m not alone though. And once therapy is over, just take our kids somewhere they are relaxed and happy, and just watch them BE.