If you’re the parent of a newly diagnosed kiddo, you’ll recognise and relate to the incredible stress you feel when it comes time to choose early intervention therapies for them. It feels like a fearsome responsibility to do all the research and choose wisely on their behalf, knowing, that the wrong decision could negatively impact them. Even worse, all the experts tell you that the best shot you have at making meaningful progress is between the ages of two and four – they call it ‘The Window of Opportunity’. So the pressure is immense, to make the right choices for your little one.
I think all parents feel this type of pressure, around a lot of different things! But not every parent is pressed for time to choose a methodology and treatment track that could take their kids all the way into their early teens. It’s not like choosing the wrong haircut for your toddler – hair grows back. It’s not like choosing the wrong nursery school for them – because schools can be changed. Choosing therapies for your autistic child will either build crucial neural pathways at a critical developmental stage of their lives – or they won’t. Beginning a particular therapy requires commitment because taking kiddos right of centre out of therapy can cause a massive regression, and possibly the loss of time already spent learning and making progress. Because ultimately, kiddos on the spectrum take a long time to adapt to change, and the sameness of routine in their environment gives them the security they need to overcome overwhelm and anxiety. Big changes can cause significant setbacks, we’ve experienced a few of the for ourselves. So if you find yourself needing to change therapies, it’s best to slowly transition your child out of what they’re currently in, and that can take months.
Knowing how important this decision was, we agonised over what might be right for Aidan from the time he was 18 months old. We researched as widely as possible, and watched endless YouTube videos, read countless articles, and visited thousands of websites. We really wanted to be as informed as possible as to the pros and cons of each methodology. But we were pressed for time, as Aidan headed up to this second birthday, and we needed to make a final decision.
When we decided to go with the ABA service provider we chose, we did so for a number of different reasons. Firstly, we felt that the bulk of Aidan’s challenges were behavioural. He was always a super smart kid with a thirst for learning, and we weren’t as concerned about him falling behind academically, as we were about his sensory sensitivities hijacking him to a point of not being able to have anyone over to our house, or leave the house for an outing. I’d read books by other special needs moms who vividly described being trapped at home, eating dinner by head torchlight, because their sweet kiddos were practically agoraphobic, and didn’t want the lights on at night. I didn’t want us to follow that same path, if at all possible. I wanted to teach my son how to cope with things that were scary for him. I wanted to equip him with a tool set that would set him up for success, no matter the location or situation. I felt very strongly – and still do – that this was the only way to stave off lifelong care, and help him to become independent of us someday. Even if he still needed some few supports in place for him in the future! When we chatted with the organisation about setting up Aidan’s program, it was clear that they were very experienced, favoured cutting edge techniques, took a lot of data, worked from a lot of data too, and tailored each of their program’s to their specific client’s needs. The programs were highly adaptable, could be tweaked at any time, and had the added benefit of providing Aidan with 1:1 learning and intervention. Each program was systematic, with each skill being learned incrementally, and therapists only introducing news ones once each one had been mastered. It essentially meant that Aidan himself would set the pace of the program and that hugely appealed to me. I do not believe that children struggling to keep up, learn anything of value. Best yet, the program was holistic, and tackled a number of different areas of learning and life. It seemed ideal for us and for Aidan, and we decided to pull the trigger on it after their Program Director spent five days with Aidan showing us how the program would work in practice.
We were excited, but extremely nervous. Because our beautiful boy had only just turned two, and we were talking about putting him in intensive therapy for six hours a day! Something, that the average two year old who still napped for two to three hours in the afternoon, wouldn’t be able to manage. And we had to drop those naps way early, in order to prepare Aidan for his new daily schedule. We also had to drop all of his baby and toddler classes he loved so much. And curb the relative freedoms of his days. It truly felt like we were bringing his childhood to an end. And that alone weighed heavily on us for many months – particularly on me. On the one hand we knew it was necessary and would be of the greatest benefit to Aidan. On the other, we felt a kind of grief that he had to go through it at all. It was a really really emotional time for both of us. And it required enormous trust without foundation, to put our vulnerable and very young child into early intervention therapy that required so much of him.
Of course, in the beginning Aidan pushed back against it all quite fiercely. There were hours of tears and meltdowns for those first few weeks of his program. And we struggled to remember why we were doing any of it in the first place. We battled to trust that the organisation knew what they were doing. It took enormous strength to stay the course. But I’m glad we did. Despite some challenges with our service provider at times, the progress they’ve made with Aidan has been truly outstanding. And I feel he is a far happier little boy overall now. But wow, has it been the toughest thing we’ve ever been through in our lives. I can’t actually understate how hard it’s been at times. So I feel so much empathy for any special needs parent who is considering what to do for their own child. I really do understand what you’re feeling and going through. Choosing early intervention therapy is a step into the unknown, a journey without a map, a future without a crystal ball, living on a wing and a prayer, hoping for the best outcome, and a gigantic leap of faith.
