So what is really offered in your community for your Autistic young adult?

If you ever find yourself in a situation where you don’t know what to do and find it easier to do nothing at all, remind yourself that doing nothing isn’t going to get you anywhere, and certainly not your child. Do something, try something, anything, but keep putting one foot in front of the other.

This was the scenario I found myself in this summer at the end of the school year as I started phoning around and researching what would come next, what was being offered in the community for my child, who is now a young man. The answer was very little, if anything. Unfortunately, I had to basically head back to the drawing board and create something, and all my energy, focus, and time went toward coming up with something for my kid. This meant my books got delayed, because instead of writing the next book in the series to bring in the dollars, I was putting everything into creating a program.

After a call to my son’s consultant and some brainstorming, I started pounding the pavement, and my child’s day began to take shape. Like all of us, he needed to have a day that could be planned out, which included work, social time, and ongoing life skills and social skills training.

When you’re dealing with a developmentally disabled child, one on the spectrum, remember that when you’ve met one, you’ve truly met only one. Every one of them is as different as the next, so when you’re speaking and meeting with prospective employers, you’re also having to train them on the skills and expectations they need to have. This alone can be an obstacle, but remember how you feel when you meet an autistic child or adult and you’re not sure how to respond or how to get him or her to engage. What’s usually needed is a trained support worker who’s there not just for the child/young adult but for members of the community, as well, to teach them how to interact and model expectations. This really does go a long way.

So let’s get into the nitty gritty. I hired a support worker who has the kind of work ethic and ability to teach in a generalized way I want to model for my son. My son now works two mornings a week at a local grocery store in the produce department. They’re actually one of few businesses that have gone out of their way to hire people with special needs, and that really says a lot about the family-run company. Another two mornings a week, he’s at the local specialty gluten-free bakery, and every afternoon, he has a job at a local studio that creates handmade décor and gifts.

He does swimming with the Special Olympics one evening a week and also does a fitness program created by a local trainer for a number of people with special needs in the community, and an art program on Friday mornings taught by a local artist. This has given him a full week, and during this time, his support worker is working with him to develop his life skills and social skills around his co-workers. This includes conversation skills and the biggest lesson: It’s not all about him. It’s about recognizing the other person.

What’s still in the works but hasn’t yet come to life is a pizza, movie, and games night as well as an open gym night where developmentally disabled and typical young adults can gather socially and play floor hockey and basketball at a non-competitive fun level.

Why do typical young adults need to be included? Because those are the ones our kids need to model their behavior on. My son’s support worker, who trained under his consultant, is often there in the background, working with him to ensure he’s learning the necessary skills, encouraging his employers to raise their expectations, and helping him use his social skills to connect with the community.

Is he happy? Just last week, he told me how much he loves working, and the best part is that his confidence has never been so high.

And remember the quote from Margaret Mead, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

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What happens when your autistic child finishes school?
 
Can this question apply to any developmental disability? Well, of course it can. The situation may differ depending on the city, the region, or the country you live in, as there may be no funding in some areas and more in others, but in the end, it all comes down to the same thing: Every one of our kids needs to have a day program or a job. Their education needs to continue. Just like you and me, kids with disabilities are always learning new things, new ideas. We need to learn so we can continue to evolve and grow, and just like you and me, our kids need to be doing something they love and that fills them with a sense of fulfillment. The last thing that should ever happen is for a young adult to be cooped up at home in front of the TV or doing nothing at all.
 
But what happens when you come to the end of school and find that your community really hasn’t set anything up? Well, then you need to create something. Unfortunately, many of us parents who were at the forefront of early intervention are now once again fighting for funding so our kids can access the trained support workers who can continue their ongoing education in life and social skills. Funding often goes to those who advocate for it, which is what happened at the end of my son’s school year: Parents in the area were being denied that funding, and unfortunately, many of the parents did not fight back.
 
What’s your response when your local government agency or funding group tells you, “I’m sorry, your child cannot have funding”? Your response shouldn’t be “Oh, okay. Thanks for calling.” It should be “Yeah, no. Cough it up!” Sometimes, and this has happened to me, you hear, “If we give to you, we have to take from a more needy child.” Just a word of caution: Don’t ever fall for that. As a wise parent said to me when my son was first diagnosed, you need to be pleasantly persistent. When dealing with schools, social programs, and government agencies, remember that these are people, real people with feelings, and they’re all human. The last person they want to deal with is a parent who freaks out and goes off on them, screaming and yelling and becoming psychotic. That may be overdramatic, but workers will seriously ban you and toss needless roadblocks in your way if you become a problem.
 
“Pleasantly persistent” is a mantra you really want to follow. It sends a very clear message that you’re serious and are not about to go away. With anything, if you feel your temper rise and are about to say or do something you know you shouldn’t, get off the phone, leave the room, and pull it together.
 
Write this down and share it with everyone you know who’s dealing with a similar situation. With the skyrocketing rise in rates of autism and other developmental disabilities, it’s always the case that we either pay now for early intervention or pay much more later. For some children, we’re now at the “later” part. As we get into the nitty gritty, ask yourself, “Okay, so where do I start?” Your answer is with your community.
 
Next week’s blog proposes some ideas about a weekly schedule you can set up for your child. Please share this with anyone you believe this would be helpful to. Have a great week! And remember the quote from Margaret Mead, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

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