Being a parent for a special needs child can feel like getting run over by a bus, over and over, for years. For sure, it’s a very cute bus with gorgeous blue eyes but it is still remarkably good at breaking your spirit. I’m pretty sure one of the main perks of being a child is that you get to watch your parents’ will to live slowly dwindle away. Or maybe that was just me.
Nevertheless, despite the long nights and early mornings (5:30am for me today, and that was a sleep in!) research shows that the more parents are involved in their children’s early intervention, the better the results.
My husband and I were trained as junior ABA therapists at the Lizard Centre as soon as my son was diagnosed. Up to this point, we have probably done about half of his hours and been able to witness so many of his new skills.
Don’t get me wrong, it’s not easy. Early intervention is hard, and extremely energy intensive. Coffee (or in my case, green tea and chocolate) comes in handy.
You have to pay attention. You have to get their attention, which is roughly on a difficulty level with stopping a moving train. You have to patiently show them the same thing thousands of times, and reward the tiniest steps. You have to not lose your temper, as they stare at the window or the ceiling instead of the book in front of them, and err on very simple programs over and over.
You have to not lose faith, even as you look at how hard it is for them to complete the simplest tasks that their 9-month-old cousin did without any help. Sometimes you have to concentrate on the immediate present, so you don’t despair about the future. Sometimes you have to think about their future twenty years ahead, so you can start preparing them for it now.
In many ways these things are harder for you, as a parent, than they are for a therapist. An outside therapist gets to sleep at night. They get to go to bed early, or late, and sleep through the night. They get to wake up in the morning not worrying that their child will never be able to learn at school, or get a job, or have kids of their own. They do therapy all day because that is their nature, and they love doing it. They are, of course, very special people.
I freely admit that I am not as special. It is not in my nature to spend all day with a small child that ignores me. I get bored if I am away from my book or smart phone for more than 2 seconds – when I was 15 I used to read while walking from the train station to the bus stop, it is a miracle I am still alive.
I am patient and I love watching my son learn, but I would much rather be at work, speaking in full sentences and dealing with clients, than right here looking at Michael’s folder and printing off endless data sheets. It is hard for me to get the energy to do even two hours of therapy with him per day, let alone the 25 hours minimum per week that I would need to do. Thank you to all my therapists for lightening this load for me.
Yet I still do it, and so does my husband. I can tell you for sure he would rather be watching the cricket and I would rather be re-watching Gilmore Girls or House of Cards. Or more likely doing another load of laundry.
These are some of the reasons why:
We know our child better than anyone
One great thing about ABA therapy is how much it can be tailored to your requirements. Our supervisor will always ask us what we need our son to learn right now, and put in programs that help. There is a program for everything. Cutting toe nails. Taking a bath. Learning to eat. We know what skills he needs every day, and what he is struggling with. We know what prizes are likely to work better, we know why he cries at that cartoon, and we know how much he can be pushed without working him too hard.
Some programs with Michael he gets stuck in. He just can’t seem to learn it even after we’ve spent weeks trying to break it down into bite size pieces. That is when it is our time to shine! In several programs, it was myself or my husband that made the ‘break through’, we figured out the ‘trick’ to teaching him that particular program. After that it is plain sailing, and he suddenly goes from 0 to 100%. But we know when it is ok to gently guide his head to make sure he is looking at the cards he’s matching, or when you just need to wait for him to look at you before you ask him to do something. We know when he isn’t paying attention and will learn nothing, and when it is safe to try.
We already have a relationship with our child
Establishing a relationship with a child can take months for a new therapist. We have a relationship built in, as parents, and ABA therapy can improve it – so it is win win for us.
I love spending time with my son. And he loves being around me, if his massive grin and constant hugs are anything to go by. In therapy, I never have to force him to do anything. He loves being with me, so he comes to me. I ask him to do something, that is maybe slightly challenging for him but not too hard, and then I give him the reward he wants – often all he wants is hugs and kisses. And since that is all I want too, it ends up working out very well for both of us!
We can generalize skills
Any kind of early intervention works best if it is done in the child’s natural environment. This is why ABA therapists come to your home, to their preschool, and even take kids shopping. Generalising skills is something that children on the spectrum can struggle with – luckily Michael finds it very easy, so that once he can do something in a room, he can do it anywhere. But it is still great to be able to know all his programs, so we can practise them in different locations, and without a ‘therapy’ tone
We are extra motivated
While sometimes being totally and utterly in love with a child can make it harder to do therapy with them – because you are so busy feeling sorry for how hard they have to work, at such an early age – it can mean you have more motivation than anyone else. Therapists are lovely human beings, but they will never care as much as you do that he can’t match 3D-3D shapes yet, or that she is having trouble with her PECS. We know that if they don’t master catching the bus, we will be the ones driving them everywhere when they are 25. We know if they aren’t potty trained now, we will have to change their nappy at the age of 18. And you can’t get better motivation than that!
This worked very well for us when we introduced a feeding program. We are the ones that had to deal with the sore tummy and the constipation when he was only eating bread, so we were very motivated to make sure that he learned to eat other foods. And now he eats a large variety of fruit, vegetables, meat and even fish!
We can do therapy all the time
I’m not sure about other approaches, but ABA therapy is a lifestyle. It is not limited to five hours per day, or whatever our folder says. It may say we have done 25 hours that week. In reality, we have probably done 50. 25 might be in the room, but as trained therapists, we do it as naturally as breathing.
We do it when he wakes up, to feed him breakfast. We do it if he suddenly develops a fear of his bath, despite loving it only last night. We do it at the playground, at the shops, or at his grandmother’s house to teach him to be near his cousins.
We have natural teaching opportunities all day. Maybe we’ve taken the little one to play group and everyone is singing ‘Old MacDonald Had a Farm’ – even if he knows how to do this, we can’t encourage them if we don’t know how. Being a trained therapist means that we can take advantage of real situations and turn them into a learning experience.
It gives us the skills to be better parents in general
A parent told me recently that all a child with autism needs is love, hugs, and acceptance. It’s true that these are super important. We apply hugs liberally in our early intervention approach. But that is not all you need.
An ordinary child, will flourish with approaches like those used in Montessori preschools, where they are allowed to do what they like and teachers take advantage of their interests. A child like Michael needs a lot more direction and guidance, a lot more pushing to encourage him to try things that he may initially strongly dislike or be completely indifferent to.
As a therapist, I know how to talk to him. I know to use one or two words. I know when he’s understood what I’ve said and when he didn’t even hear it. I know to encourage him to communicate his needs in other ways. I know how to react how to handle problem behaviour, and what he is likely to understand in the world around him. I know what he is capable of learning – it may seem like he doesn’t have the capacity to learn, but with my experience I know he can learn anything, if taught correctly.
If I look at my son, outside therapy, sometimes I can despair. I look at him next to other kids his age, who are playing together, talking, telling funny stories and asking questions. Michael doesn’t respond to anything I tell him and seems totally uninterested in toys or books.
Yet I have seen him learn amazing things in therapy, master programs that I at first thought he had less chance of learning than I have of flying. I know how to encourage him to spend an entire minute looking through a book. I know how to help him sit near a peer and play with him. I know how to break down a task and teach him myself, without requiring a separate program from his therapy centre.
To an autism parent, I have this advice. It can be extremely daunting, especially straight after a diagnosis, to consider also doing therapy for your own child. You might have a mountain of paperwork so high you’re getting altitude sickness just looking at it. You might have other children that also need attention. You might be recovering from a diagnosis, and have five books and three websites that you absolutely have to read. By tomorrow.
Wait for six months before deciding whether or not it is for you. Sign your child up for early intervention first, get some therapists, and use the breathing space to recover. Then start. Even if you are simply a relief therapist, someone that is available when someone else is sick, on holiday, or drops out suddenly, you can make a big difference. But even if you simply don’t have the resources, whether in time or emotional, to do actual therapy – keep up with it, read the programs. Together with the great team you’ve got, you can do this.