Finding Help for ASD Babies

Part 2 of the autism parenting series

Keegan got started in ABA (Applied Behavior Analysis) when he was around three years old. Prior to getting him into an ABA program, we did a handful of visits with the people of ARC of the South Shore (early intervention). Lovely, caring souls who come into your home with a tackle box filled with toys and a three ring binder tucked under their arm ready to help.

Both of our boys needed some extra care. Jake, who is developmentally typical, had torticollis, a condition where the muscles on one side of the neck are tight as guitar strings, causing a “stuck” head tilt. This gave him a flat spot on his head and 12 weeks in a molded helmet for 23 hours a day (we almost never made the full 23). The relief he felt from getting out of the sweaty bucket to have his head scratched was so beautiful that it was heard to resist taking it off. Two weeks into the treatment, that helmet smelled like a hockey bag.

Those newborn and infant days feel like 40 hours each, but they start to stack up and become weeks and months. Jake graduated from his helmet, his neck muscles balanced out to support his beautiful giant noggin, and he was back on track with his peers. Keeg needed more help.

Finding service providers was daunting. Cait and I had no idea what we were doing. If you’ve ever tried to hire someone to work on the HVAC equipment of your house, it’s like that but with higher stakes. You can’t seem to get anyone on the phone and when you do, they are all jammed up for months before they can get to you. This waiting period is coupled with relentless pressure from well meaning doctors, specialists, and others who never stop talking about the importance of early intervention. The sooner the better, the sooner the better, the sooner the better. We enrolled Keegan in the first facility we could find without a waiting list. All decent places have a stout waiting list.

I should have found the facebook groups for parenting kids with autism back then. I’ve since found many nuggets of help in these groups. We didn’t know anyone else who had been down this path before so I just made a ton of calls and got him started at the first place that I could speak with a human. If you have the means in the early days, hire an advocate that has done this before. You can’t climb Everest without a skilled Sherpa.

The experience at his first program was mixed. Everything is mixed. It feels impossible to interview and evaluate different providers. How are we supposed to know what solid care looks like? The facility and the leadership of the facility matter but not as much as the actual humans that are providing the services (BCBAs and the technicians assigned to your kid). Like all professions, there are people that are so good you want to slip them wads of cash and there are people that stink at the job. The only way to evaluate the humans seems to be to get involved and pay attention. Cait and I would show up and sit on the floor to watch sessions and ask questions.

I made a mistake not moving him out of this place sooner. The people that we really liked and Keegan bonded with started leaving to go work at other places. We were told that it’s incredibly hard to hire and retain staff. This is probably true, but if all of the people you like leave, maybe you should too. The replacement staffers did not inspire confidence.

The main evaluation tool that we have as parents is results. Results take time. Soul crushing chunks of time. Anytime you change providers, you can expect a long frustrating period of starting over. The therapists need time to build rapport and trust with your child. During this time, you can expect progress to grind to a halt. For us, progress has been anything but linear. Keeg has shown solid momentum with his communication iPad only to have it vanish weeks later. This part has been hard. We love the people at Proven in Norwell (where he is now) but it’s hard to know if he should be “doing better”.

I’d be a real a-hole if I failed to acknowledge how hard this job is. The people that choose to go into this line of work are special. Only certain ones are capable of doing it well and I don’t know where they come from. It’s not like getting a job waiting tables. If it weren’t for the people who work with Keegan, I would have had a nervous breakdown by now. Being able to leave him in the hands of people we trust gives us the space to go away and recharge the parenting batteries that are often deep in the red.

The most daunting part of Autism is that there is no set playbook to run. The spectrum seems infinite and there are lots of experiments. You try some stuff and see if it works. Then you do more of the stuff that seems to be working while shedding the stuff that doesn’t.

I often wonder about people who are less fortunate than us. Even though we are facing the challenges from two separate houses, we’ve been lucky to have a deep bench of people ready to jump in to help us as well as the finances to be picky about providers. I don’t know how you’d do this in tougher circumstances.

If you want to join the 3000 people who read the first piece about Keegan, it’s here:

Keegan Joe