Where does this path lead?

I am the mom of a child with autism. I have always known a bit about autism, but when the day came that my son was diagnosed, I did what many parents before and after me have done: I researched to the limits of my capacity. It was almost as if learning enough about awareness, acceptance, interventions, studies, and options could somehow quiet all the anxiety about the present and future. I learned almost everything there was available to know. I attended workshops and conventions. I joined autism parent groups. I found autism mom friends.

Early intervention and special education became core parts of my advocacy for my own child and for others. And it worked. Sort of. We went from a non-verbal child, to using a speech device, to speaking aloud with his own voice. We went from being unable to ask for help to asking for all sorts of things. We went from letters and counting to reading and math. Nothing is ever perfect. In fact, the resources in our education system are ridiculously lacking. But at least there was something there, something to use, something for which to advocate. When our children are young, we give them all the love, support, and life experiences we can. We use the education system to help them grow and develop as much as possible. We cultivate their interests, show them the world, and try to help them learn to navigate life.

As my child grows, I look into a not-so-distant future when I wonder what he will do after school. I understand the path I’m on with him now, but I have no idea where it goes next. Will he be able to have a job? Will he be able to live on his own? How can I possibly pay for the care or assistance he may need? Will he have friends? Will he do things he enjoys? Will he be happy? What will happen to him if something happens to me? All these questions bring an anxiety that grows and grows, because unlike early intervention and education during the school years, there are no resources immediately available. There is no clear path to take for him. All any parent wants is for their child to be basically healthy, happy, loved, and fulfilled. It breaks my heart wondering if this little guy that I love so tremendously will someday feel sad, afraid, and alone. Can anyone appreciate his humor, his heart, and his love of roads and maps the way I do? Can he possibly have a community when he grows up?

I have spent years advocating for early intervention and resources within our public education system. Now, I am turning my energy toward the future. in 2021, the CDC reported that 1 in 44 children in the U.S. is diagnosed with autism spectrum disorder (ASD). It is estimated that 5.4 million adults in the U.S. are on the autism spectrum, and there are over 7 million adults with intellectual/developmental disabilities (I/DD). Where can these people find housing? Where can they find work? Where can they find friends and communities? What will happen to those 1 in 44 children when they get older?

Our present statistics are worrisome, and predictions about the future are distressing. One of the most important things we can do is help our communities with disabilities to live stable, productive, fulfilling lives. I hope that you will join me in helping My Heart’s Home expand the opportunities and options available for people with diverse needs across the country. I do have hope for a better future if many of us can work together on housing and community initiatives, one home at a time.

Megan Stewart-Sicking, Board Member, My Heart’s Home