by Maryanne Nugent, Director of Marketing & Family Support, AHSS
Five and a half years ago, I was fortunate to happen upon the founder of Autism Home Support Services, Steve Kaufman. I was impressed by his idea for the company, wished it had been around when my son was little, and wondered if he would hire me – I needed a job! When he did hire me, some of my family was concerned that I was going to work in the field of Autism. Didn’t I get enough of it at home with my son? I’d been volunteering in the field for years; would it be too much? I suppose they wanted to know “Why do I do what I do?”
When I took the job as a Family Support Coordinator, I hoped it would be a way for me to “pay back” all of those who had supported me during the early years after Drew’s diagnosis. My responsibility as a Coordinator was to help families through the intake process, verify their insurance coverage, gather documentation, and match them with a therapist. However, I think the most value I brought to the families that I touched (over 100!) was to simply listen.
So often, parents were desperate to speak to someone who actually understood what they were going through. Many of these parents didn’t have anyone who knew Autism; many didn’t even tell friends and family about their own child’s diagnosis. So of course, they wanted to know about my son and his story and I willingly shared all that I could.
- Is he talking?
- Does he go to regular school?
- Does he have friends?
- Do you have other children?
- Do they have autism?
They wanted what we all do – a glimpse into a possible future for their child. They wanted hope.
And as the saying goes, when you meet one child with Autism, you’ve met one child – every family was different. These children struggled with a variety of issues: eating, flapping, spinning, sleeping, biting, aggression, toileting, and on and on and on. Some children were mildly affected and some very severe but their families were desperate to get them help.
There is one family that I’ll never forget. I met this family in my first year at AHSS. Their beautiful little boy, age 6, was mildly verbal and struggled with repetitive behaviors as well as severe tantrums. He was particularly obsessed with “triangle pizza”. The BCBA and I spent about 2 hours in their home and the little guy must have asked for it 100 times. After our assessment visit ended it was about 8:30 in the evening and the little boy kept asking his father again and again for triangle pizza. He was becoming more and more agitated and Dad felt that he was about to explode.
I asked Dad about the pizza and he explained it was Pizza Hut pizza, (they cut them in triangles). Unfortunately, Pizza Hut didn’t deliver and so dad was going to pack the little guy in the car (it was January) to go get the pizza. When I asked Dad where the closest Pizza Hut was, he explained that they were actually driving to one about an hour away because they had a drive-thru. His son’s temper tantrums were so severe and Dad was too scared and embarrassed to take him into a restaurant, even for a few short minutes to pick up a pizza. He explained that they are often so exhausted from his persistence about the pizza that they sometimes make this drive 3-4 times per week!
I knew that our therapy teams could reduce the child’s behaviors, increase his communication, and get him to a point where he could walk into a restaurant to pick up a pizza – or even stay and eat one!
However, my big WWDWWD realization was that:
- I wanted to see progress in this boy so that his dad, tired from a long day of work, didn’t have to drive over an hour to avoid a tantrum.
- I wanted the lives of parents of children with Autism to be a little easier.
- I wanted to help kids sleep in their own beds so that mom and dad could get a good night’s sleep.
- I wanted to see a child participate in a family birthday party so that mom and dad didn’t have to miss it as well.
It’s these little things in our lives that can give us hope.
I am so lucky that over 5 years at Autism Home Support Services, I have seen many, many of these small victories for children and most especially their parents. That’s why I do what I do.