What is the first thing that comes to mind when we think of supports for families of children with ASD? Probably service categories: respite, in-home ABA therapy, good placements and related services on the IEP, financial assistance, assistive technology – that sort of thing.
Increasingly, families are discovering that services are not available or they are limited, due to funding cuts, lengthy waiting lists, and shortages of providers.
Finding ourselves in this situation, it is tempting to feel as though we are without any support at all, left to manage as best as we can, even though we feel our children’s entire future is at stake, and the “system” is letting us down.
We can make a decision at this point to respond any of several ways:
• We can become angry and desperate, lashing out at anyone who picks up a phone at the other end, complaining, threatening, and sometimes crying. As Dr. Phil might ask, “How’s that working for you?” Exactly;
• We can advocate for change for the sake of our children and others, by contacting local, state, and federal legislative officials or state agencies that control the funding or regulation of various services, and ask how we can help them increase the availability of services, funding, or providers in our area or state;
• We can try to become one-person autism fix-it machines, learning how to implement therapies at home, homeschooling our children, or starting our own commercial or non-profit organizations to provide services, funding, or other options.
• We can ask for help from family members, friends, co-workers, fellow worshipers, and others, to give us time to run to the store, provide after-school care, or to help implement behavioral interventions.
However we decide to handle things, there is another type of support system we can add to our toolkit that we might not have considered. This is something that might not become apparent until years down the road, after our children have finished school, ended years of after-school therapy sessions, and we have found some kind of peace with the diagnosis, acceptance of the imperfections of public and private systems that are supposed to help, and have come to accept our own strengths and limitations, for whatever successes or failures we have managed to have, as parents.
Coming from the other end of this parenting experience, I can hand back a few pointers to my younger self for where to find this hidden system of support:
Dear younger me: Look in the quiet places of your life that have nothing to do with ASD, ABA, IEP, SSI or XYZ.
But what does that mean?
It means the peace, strength and acceptance you will find years down the road doesn’t necessarily come from yelling at people on the phone, or convincing people in power to do things your way, or “winning” the biggest battle of all – “fixing” the autism. Any or all of those may or may not work out.
What do you mean by “quiet places”? Where do I look?
What happens while you are dealing with the big “A” in the room, is that your life as a human being continues to go on all around and inside you. You may find love, happiness, acceptance, and inclusion in places that aren’t even on the checklist of “supports” you are going after on behalf of your child.
1. What about the teacher who says she is happy to see your child come to school in the morning because his fantastic smile always makes her day?
2. What about that person in the prep area at the back of the taco place who sees your very unique order come up on the screen and yells, “Oh that’s gonna be my girl. How’s she doing today?”
3. What about the spiritual leader, or counselor, or other mentor, who helps you gain insight into the purpose of your life, and helps you believe in yourself?
4. What about that friend or family member who takes a special interest in your child and always asks for updates and news on the latest successes? Even after all these years, dear younger self, I still run to the computer every day to send mom photos of my child’s latest painting or tell her a story about a little breakthrough.
5. What about that moment when you revisit an interest you had pre-autism, and get back into a spiritual practice, or dance, or theater, or sport, or fiber art, or painting, or finishing a degree you left half done in order to become a super autism parent? Let’s take a sensory tour of all those places. Walk into a place of worship, or meditation center. Feel the years of devotion, prayer, silence and peace that fill the space. Walk into a dance studio. Look at the beautiful floor and the mirrors. Walk into a theater. Smell the paint and sawdust, run your hands over a few seats. Walk into a gym or locker room. Smell the sweat. Remember what it feels like to be physically exhausted and emotionally flying. Walk into a fabric or knitting store. Touch some fabric or yarn. Walk into an art store. Smell, look, explore. Go online and look at next semester’s classes. Register for the one that excites you the most. If they still use physical textbooks, walk into the bookstore and take a sniff. If not, go to the office supply store and pick up a notebook and pen. Smell that place, and see if you don’t get an extra little thrill. Whatever it was that got you excited, put yourself physically in touch with it and briefly fill your senses with that particular environment.
Then go home and try, younger me, to sit quietly for a moment or two, and forget about all the advocacy and urgency and things that aren’t going right all around you.I know there are many. Just let images float through your mind of people, moments, places and activities that make you feel happy, alive, and peaceful. Don’t put words to it. Just let it all be there for a bit.
And by the way, younger me – try, before too many more years go by, to stop saying No to all those things in number 5 because you are too busy. Say yes to something small. See if your child might join you in doing something together. Crack open that part of your life where your deepest joys await you.
For all you know, doing things that excite and fulfil you might be an inspiration to your child to develop his or her own interest or hobby.
A parent-child relationship is built on the foundation of so much more than the services and supports we usually look to when a child is diagnosed. Sometimes the most profound inner strengths are grown and nurtured in the quiet corners of our lives that go unnoticed and under-appreciated.
Go there. Find what can be loved and nurtured. Let it grow and support you in ways you can’t imagine.
- J. MacNeill