Navigating the Storm

Sunbul Rai and ABA Therapy saved our children’s lives. I hope she one day reads this as it still brings tears to my eyes as I write this, and I am sure my wife would feel the same way.

 

I don’t take this lightly because the truth is, that finding ABA (applied behaviour analysis) therapy was the number one most important thing we did as parents. It is the reason our children are not on feeding tubes, it is the reason our children do not have colostomy bags, and it is the reason that our children currently have a voice through technology. This was the only therapy that I found made a real difference in both our children’s lives and ours.

 

For a quick introduction, think about it this way – imagine if every time you did something requested from you at work someone handed you money. It takes something that is forced, in this example the work, and then reinforces the act with something that you want, the money. This is a very rudimentary explanation, but in a nutshell, this is how we run our lives at the moment. And I wouldn’t have it any other way.

 

 It started with feeding therapy. The first session took around three hours to get our youngest to take a sip of milk out of a peds dispenser. Think of five adult therapists sitting around a kid’s table yelling “shot, shot, shot” every time Trystan would touch the cup. Just out of reach were his favourite crackers and chips, let’s call them the reinforcers. For some this seems easy, take a drink, and eat your prize. For him, it was the hardest step he would have to take on this very long journey we have had with ABA. 

 

Today, our kids will eat more foods than we ever thought imaginable. It takes a reinforcer unless they prefer the food, but they are eating it. And this is considerably better than the feeding tube the experts told us we would need (sorry, had to take that jab). Feeding in our house is not family dinners at the table, it is one kid at a time, one bite at a time, and everything is reinforced. But I promise you that my wife can tell you exactly how many ounces of fruit, vegetables, proteins, and fats our kids eat per day.

 

The second place ABA became important was for our boys to create a voice. They are both non-verbal, aside from the screams in the middle of busy spaces that always get us frowned at, but they are making strides with technology. It was funny the first time our oldest Ashton picked up my wife’s iPhone. Within minutes he had learned to swipe, was getting into apps, and had changed her background somehow. Even today I believe he is more fluent in technology than Amy is.

 

So, this is how they talk. Both children have an iPad, or several, that have programs with hundreds of pictures in them. When Ashton wants something, he simply picks the picture and taps the button to say, “I want crackers” or “I want to go in the hot tub”. As long as the item is preferred, he will utilize it all day. Trystan is not so fluent but get him into a Tim Hortons and he knows to hit the donut picture over and over and over again until the entire place is looking at him. 

 

The reason ABA works is that we reinforce the use of the technology every time they do it. We did not ignore them or say no, we reinforced them for using it. This is the key; you must work at it, so they learn it. Everything takes time.

 

I still remember the days when it took hours to get them to try new things. My wife would sit with the therapists for an entire afternoon just to get one bite. It feels like ages ago as this has become second nature for us, and most of our family. But the other day we sat in a buffet as Ashton picked the skin off the fried chicken and ate it with strawberries. This is a win, disgusting, but still a win.