The winter my son Nat broke our playroom window with his head was an endlessly snowy one. He was home on school break and on sensory overload — rocking too wildly on a rocking chair, too close to the bay window. A nauseating shatter, like the crack of thin ice underfoot.
Miraculously, he was not hurt.
Nat has fairly severe autism, and back then he struggled with all the unstructured time and the oppressive indoors of a New England winter. We all did. The season of days spent inside wears on all families. But if you are also living with a child with a complex developmental disability, who is nearly non-verbal and with sensory issues, it can mean that he will likely need extra help staying safe.
Back then I didn’t realize just how sensitive Nat was to confusion and unorganized days, or how his anxiety roared inside him, jangling his nerves, forcing him to pace, to scream, or to pinch. I understand now that autism wasn’t the enemy — lack of help was. We needed someone trained in autism education, who could work directly with Nat on activities of daily living, self-calming, social skills and how to behave out in the community; someone who could also work with us on how to organize Nat’s time at home to comfort him with a better sense of order.
And although our school system did provide us some hours of behavioral consultation, this did not help much.
I remember telling our town’s special education director that we needed more help. Her reply was something like this: “Any more help and we’ll have to start talking about residential placement.” These words were like the death knell for me. I could not bear the thought of him moving out.
I’d heard about a program offered by the state, a grant for families like mine intended to keep people like Nat out of institutional living, like a school residence — and to keep the family intact. This grant offered a small salary — maybe around $10,000 a year — to pay for a substantial support staff person in your home. This person could work with our child the same way a teacher would, teaching him or her about home routines, safety in the community, alternative communication methods like typing or using pictures or symbols.
The problem was there was a several-years-long waiting list, while families would fall apart or the child is sent to a residence — if the school system even agrees to spending $100,000 a year to do so.
Some Tutors Left — One Stayed
In the end the state gave us about $1,000 a year from a program called Family Support. For a few years, that money — combined with our own savings — enabled us to hire college students to come to our house and work with Nat a little bit, giving his afternoon some structure, and teaching him new skills like playing educational games on our computer, or practicing play skills or going out into the community to learn appropriately calm behavior — activities that I could not manage very often. I had two other young sons at home and keeping them safe from Nat’s aggression was a heartbreaking situation. I was failing this sweet young boy in that I could not help him understand the world, and yet I had to always be thinking one step ahead of him, in order to protect the other two.
And unfortunately, many of these tutors left us, one by one. We could not afford trained educators who knew how to communicate with Nat. That led him to become further destabilized, and overcome by terrible frustration: he would hit them.
But there was one who was different, a Boston University student who connected with him. Her devotion to Nat went far beyond the small state stipend. She stayed with us several years, and actually taught him how to read.
As he grew up, Nat’s communication abilities developed profoundly, and he learned some self-control. He was able to stay home several more years but at 18 his anxiety and aggression spiked again, and he finally had to move to his autism school residence. Although it was necessary for him, I felt ripped apart for six months trying to believe it was the right thing to do.
Help For More Families
Now the number of people diagnosed with autism is greater compared to decades ago: 1 in 68. And even though the CDC recently announced that the numbers may be leveling off, long vacation days have not gotten any easier.
There are something like 5,700 families in crisis like ours in the state who need help teaching their children safety and home, community and life skills. These families may also need help overnight to keep the child safe in the house.
The Arc of Massachusetts, a statewide advocacy organization, says on its website that “across Massachusetts, 18,000 families are caring for a family member with an intellectual or developmental disability in the home.”
Leo Sarkissian, executive director of the statewide group, said they are now pushing for the Legislature to increase the budget for supporting families in various ways: $15 million for this year and a $25 million increase to help families with older children and young adults. These increases would get more money to families to make the support “meaningful,” Sarkissian said, and more than just a few hours a week of respite. Increased family support would help hundreds of families, including those who have a young adult turning 22.
“This year 900 young adults will be entering the system, a 34 percent increase in just five years,” Maura Sullivan, the ArcMass director of government affairs, said. “So the Arc is also supporting an increase in funding for the ‘turning 22 budget’ and other critical adult services.”
In this era of community inclusion and accommodations, residential placements can and should be avoided. Last month Gov. Charlie Baker released a favorable budget number, with a $5 million increase for family supports. Now we need those numbers to be increased in the House and Senate to reach more of the families in highest need.
We were lucky to get Nat the support he needed, when he needed it. Now 26, Nat has learned enough independence as a young adult that he no longer lives in a group home. He has an apartment with a caregiver and lives just 10 minutes from us.
But others we know are not as fortunate.
Rebecca, a single mother of three, writes on the ArcMass website: “A day in our life starts off with me, mom, sleeping on the couch to ensure that Riley (11) does not set the house on fire by cooking in the oven, or try to escape and turn my car on.”
We all need to plan as best as we can, but sometimes we need the larger community to step up and help. Family support is one such shoulder to lean on. A timely increase in funds would not only cost the state less in the long run, it would also keep so many doors open for these young adults on the spectrum — and hopefully have fewer windows and hearts broken.
Susan Senator is the author of the just-out “Autism Adulthood: Strategies and Insights for a Fulfilling Life.”