I have to make a confession. From when Michael was a newborn, I was jealous of all the other mothers. The ones that got to actually be a part of a mothers’ group. The ones that got to sit around chatting and having coffee while their babies slept in a pram by their side. Or study, or exercise, or get all their housework done. Even though I could see that raising a baby isn’t easy for anyone, it always seemed extra hard for me.
At first I thought, it’s just colic. I’ll have a rough three months and then it will pass. And it was colic, and it did pass. But it was not ‘just colic’. It was screaming every minute of the day and night. It was a baby that only slept in a sling while hanging off me, so that I did a wrote whole essays on international tax law with a baby hanging off my chest. If I put him down, it would take me an hour and a half to get him to sleep, and then he would wake up in five minutes. So on he hung, like a (very cute) little pear. It was good for forehead kissing, and good for always knowing that baby was breathing because I could feel it against me, but not very good for sanity or for rest. Very bad for eating or showers, or even basic things like cooking and cleaning.
Then after three months, it got slightly easier. I could now put him in a pram and he didn’t scream. Immediately, that is. I could even rock him to sleep in a pram, even though it usually took at least an hour and I would then have to rock him back to sleep every five minutes. And the breastfeeding had sorted itself out by then, which was great since I had eight solid hours of not screaming every day to look forward to. I did most of my breastfeeding lying down in bed (no pillow, no bedding, but you get used to it quickly) so I got plenty of rest.
Despite all of that I continued being jealous. When Michael wasn’t eating, he was still screaming. All the time. If I dressed him, or undressed him, or changed his nappy. Got him in the bath or out of the bath. He had respiratory issues so every cold was a major life event, that involved me not sleeping AT ALL the whole night as I rocked him in a half inclined position in the pram. Constantly. If I stopped rocking him even for a minute, he would wake up. I got through The Godfather though – good show, I recommend it.
The only times Michael was not screaming was when I was walking him in the pram, outside, in a busy place with lots of lights and lots of things happening. Quiet pram walks along the water? Couldn’t happen. My baby would cry the entire time. I did get lots of rounds of our local shopping centre done though. I still remember the exact order of all the shops, and all the cafes that the mothers groups used to like hanging out at. And the thoughts that kept coming back through the boredom, ‘I worked my butt off at school, got a score in the top 0.3% in my State, did six years at uni, so that I can spend six hours a day rocking a screaming baby? I think my brain has actually melted…how do you bring your mind back from the dead?”
Then after he hit six months old, the allergies started as well. I already knew about dairy (had to cut that from my diet as it passed through in my milk) but I added eggs, lentils and almonds to the mix. So all Michael’s meals would need to be prepared by me, separately. No take out for baby!
Being a Super Parent
The biggest challenge though was one I set for myself. It was the level of intensity that I exhibited as a parent. Now looking back I realise I was just responding to my baby’s needs. I had to read to him, talk to him, sing to him, and press buttons on toys for him, all day long. Never could I just leave him on a couch – he needed constant stimulation for me. I spent my time walking around and around that shopping centre, reading those books and singing those songs until I lost my voice.
This had many good points. I loved spending time with Michael and I knew that what I was doing was making him happier. He actually spent very little time crying – most of the time he started crying, and I would fix everything. At least while he was still a baby. But it was exhausting. And it meant I had to give up on many things that had been very important to me – things like my career, my studies, and a lot of the time even basic sanity.
My Husband Was Exhausted Too
If I make it sound like it only affected me, it didn’t. My husband would take Michael early in the morning while I caught up on sleep. He would then deal with the screaming as best he could (and Michael screamed way more with other people than with me). Then go to do a full day at work, and come back to a child that was still screaming, a wife that was very close to doing so, and maybe dinner if he was really lucky. Then he would take care of Michael while I had a shower (lots more screaming) and help me put him to bed for the night. At which point we all crashed as well.
We knew babies were hard, but we didn’t know our lives would be transformed to quite this extent. I knew other mums. They exercised, studied, got degrees and went back to work with young children. It was hard for them too, being a mum is always difficult, but it was just a whole other order of difficulty. Let’s just say it’s easier to go to work when your child doesn’t get up every five minutes all night long.
The Toddler Stage Begins
When he started walking at 15 months, the ADHD really kicked in. He ran around like a crazed well…toddler I guess. You know your toddler, the way they get after a birthday party where they get lots of cake and sugar, they are totally hyperactive, they’re tired, but they definitely don’t want to go to sleep? That was Michael all the time. He wouldn’t stop moving, and he didn’t do it around me. He just ran straight ahead. It’s a miracle he survived this stage. And of course this was the age he started to get sick and woke up every five minutes all night long, with the blocked nose and general hyperactivity. I often spent six hours out of any twenty four just getting him to sleep. And then listening to make sure the ventolin and prednisone were doing their jobs and he was breathing.
Eventually, the regressions came in too. Not that he had much to regress from, but even the few skills he had were going. And he was becoming more removed from us, while at the same time he started narrowing his food down until he was left with only bread and milk. I think that was the final straw.
So the autism diagnosis at 20 months, if anything, was a relief to us. I now knew that I had been right the whole time – it was harder, and he did need a different approach to other children. It was traumatic too, of course. I would have preferred that he had been diagnosed with almost anything else. Some treatable form of cancer? At least that would have only lasted for six months. Something that just affected his motor skills and left his intellect alone? This was for life, and would affect every single important skill.
There were plenty of web sites and blogs that were out to tell me this attitude was wrong. They promoted something called autism acceptance. There were standard inspirational quotes, like their brain doesn’t work worse it’s just different. Or the only thing that stops an autistic person is society, not their autism. But all of those blogs and books were written about high functioning children. They had nothing in common with my child except a sensitivity to light.
I could see Michael as a sixteen year old, weighing 70kg and 170cm tall, still running backwards and forwards around the room, still deliberately crashing into the couch or the walls, looking for sensations. Unable to understand pictures or writing, able to speak maybe twenty words and understand something like 100. Very happy, undoubtedly, because he always has been and because we would put in every effort to make sure he was, but living in a completely sensory world. And they were telling me his brain was different, not less?
Still Jealous of Everyone
And what made it worse, is that I was getting jealous even of parents of other autistic children. Once I saw them, I understood the logos and the ‘different not less’. Their brains WERE working fine. It WAS just a different mind, not a worse one. They could play, and occasionally stim, whereas my son just stimmed and occasionally played (if I bribed him to do it). Many weren’t delayed at all, just had some social and communication problems. Others were slightly delayed but catching up quickly. I knew in my logical brain that they had plenty of challenges, and happiness didn’t come from maths ability, but my heart would just think – why us? These other kids can do everything, and their parents are broken hearted because of their lower executive functioning skills. I am worried that my kid doesn’t have ANY kind of functioning skills.
Even though I would never go down that road, I understood why other autism parents in my centre tried alternative treatments.
To be clear all of our problems weren’t due to autism. Some of it was allergies, some was asthma, and a lot was just the luck of the draw. But most of it was either directly or indirectly due to autism. Not the autism in the ‘different not less’ posters – the bright kids lining up toys or obsessed with dinosaurs. The other type that never makes it into the promotional videos. The type with the crashing into walls and the mental level of an 18 month old at 18 years old.
Seeing the Good
It wasn’t all bad of course. Michael was the cutest and best looking baby in the world (in my completely objective opinion as his mother). He was extremely affectionate, a total flirt, and all the breastfeeding and intensive parenting meant that we had the kind of connection most other people couldn’t even dream of. None of that went away with an autism diagnosis. Even when I did the first month of ABA with him myself, all the screaming didn’t ruin the connection. We have always been very close – and the ABA helped my husband develop a similar (or maybe even stronger) bond with Michael as well. We loved him very much, and he knew it. He was a very securely attached little toddler.
Anyway, I promise I have a point with all my reminiscing.
It was Michael’s third birthday recently. Yes it was different to how I thought it would be. He is developing much more slowly, some skills he may only get many years after other children and some he may never get at all.
The End of Jealousy
But I had a realisation recently. I am no longer jealous. I used to feel a pang every time I passed a mother playing with her kids in the plaza, or a family out together at the park. And then I would tell myself that I have no idea what challenges they were facing, and move on. But now I don’t have to tell myself anything. It took over a year, but it is gone.
You see while I was busy stressing about his future, organising therapists and enrolling him in every typical/special school within a 20km radius, Michael was busy growing. Somewhere along the way he became a loveable, easy-going, well-behaved, happy little boy. He also learned to sleep and eat and will now eat everything I give him. How little we really need for happiness!
How did this amazing transformation happen? Well, I think mainly it was fixing Michael’s sleep that helped. It is impossible to be even close to rational, or close to happy, when you are sleep deprived. On some days with Michael I have been so constantly sleep deprived, I was worried that I had depression. I looked up the symptoms, and I didn’t have it. But I feel for the people that do suffer from it, it must be extremely rough. I fixed it with melatonin and Nasonex for his allergies. It’s amazing how much more optimistic you can feel when you’ve had a good night’s sleep.
Therapy has, of course, helped tremendously as well. Seeing your child learn things is amazing, and seeing them apply those skills outside of therapy is even better. He can communicate with us, ask for what he wants, direct us where he wants us to go. In many ways he is better at doing this than most typical children. He even hugs and kisses us when we do something he enjoys so I’m not really sure who’s doing therapy with whom. We can see his cheekiness, and his loving, affectionate, kind nature. We have always seen him as a treasure but now he’s a treasure with personality!
I still firmly believe that without therapy what I saw in my nightmares would have happened. The sixteen year old crashing into the walls. But luckily for us it will not be Michael’s reality.
I am so lucky
And in many ways I have realised I am extremely lucky with my little boy. He is sweet and kind, happy and loving. Because of the therapy and because I am now better at meeting his needs, he is very well-behaved. Most times at a party, it is someone else’s child throwing a tantrum or refusing to eat. Every child has problems in their lives – it is very hard work being so small. But Michael, along with us of course, has become much better at dealing with his own, individual, challenges.
He is the most loveable child in the world. I would still take away his autism in a flash if I could. I am not at that stage of acceptance yet. But I am starting to accept that both he and I may still have a great life, even though it will stay. It will be a different life to the one my mum friends have. I have no idea if he will ever be fully independent, be able to go to a mainstream school at any stage, or even understand full sentences. But his life will be full of meaning and many loving relationships, and that is what matters.