What is it like to be the parent of a special needs young adult?

Editor’s Note: This essay is a special contribution from Eric Newman (newmanteaches@gmail.com) and his wife Linda Newman (linda007@gmail.com).

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I love the question “What is it like to be the parent of a special needs young adult?”  Hmm? I remember the question “What is it like to be the parent of a special needs child?”  That questioned seemed like only yesterday.

To the latter question, I could write a book on how my family survived the trials and tribulations of raising a child with special needs and navigating the fields of the educational system, all the government regulations and therapeutic treatments and interventions with all their protocols.

At age 21, you lose the security of the school system. Even though it was often a tumultuous ride, we always knew that from bus pickup in the morning until dropoff in the afternoon that he was in a structured environment.

All families face the challenges of our children entering the workforce and leaving home after high school/college, but if you thought the opportunities were slim for typical children, they are barely negligible for young adults with disabilities. Now, throw in COVID-19 and you now have a slew of new challenges. Perhaps that will be for another article.

For a child with the diagnosis of Asperger’s syndrome, high functioning autism, for example, the opportunities are few, but are available and with the right guidance, the chance for success rises. But let’s look at a young man who is autistic, considered moderately functioning on the autism spectrum.

This young person may have a lot of capabilities, but just may need more assistance than a company may be willing to deal with and why should they? It can be perceived as daunting for employers.

It’s not mandatory in most cases to hire people with special needs. Extra training may be involved or an additional job coach may have to be brought on board for assistance. Training of the existing employees, so they understand diversity and disability in the workplace may become necessary.

There are companies that conduct a certain amount ($10,000) of business with the federal government that are supposed to, by new regulations, have seven percent of their workforce made up of People with Disabilities. Unfortunately, this is not being enforced and even if it were, they are more likely to hire a young person who is higher functioning for those limited positions.

So, for our family and so many other families in our situation, we are dealing with the crisis of finding reasonable employment for our children. To be eligible for adult support services you must be SSI and Medicaid eligible. You can’t have more that $2,000 and you can’t make too much money. Just learning, knowing and applying these rules so your young adult won’t lose access to the only programs that can help them is stressful enough for families.

Couple this with a state department that is in the midst of changing the rules and you have uncertainty. Now, couple that with the prospect of finding the proper housing situation that can address safety, affordability, structured activities and transportation and the dilemma becomes enormous!

And of course there is the million dollar question, “What happens when I don’t live to a healthy old age?”  Who will really look after my child/adult for the possible 20-30 years where he has no family. That prospect alone is the #SingleMostFear we have and I still shudder as I type.

My wife and I are beyond that now as my son turned 27 and is already grappling with “The Real World.”

The “TheRealWorld” is finding a job for your child, training your child all the appropriate behaviors you can think of, so he can be appropriate on the job, it’s not just the work, but the personal interactions. You have to hire a job coach and communicate daily on every aspect of the job and child.

You pray every day that he’s appropriate and succeeding.

You also have to get him to and from his job. Will it be friends and family, a bus or car service and that brings tremendous fear as you have to let others in to protect your child.

Even with a job, a young adult still needs many services to keep them actively engaged in the community and to have friendships as well. These services you find for your child come with myriad worries. Is the program safe, educational, engaging, fun or is a babysitting service while you’re at work.

You don’t really know, especially if your child can’t explain every nuance of what is happening in these programs.

Personally, we get to know everyone running their programs. We learn their story and become friends because we want them to make sure they look after our son like he’s a member of the family and not just a body. The worries are immense and they don’t go away, especially when the time comes to live on their own. I’m not complaining, just being brutally honest.

Then, there is the huge issue of housing and if you think finding employment is difficult, housing is like finding a needle in a haystack. It’s just not a priority in our society.

What we have accomplished so far with housing is all due to the special needs families stepping up and engaging our community for help. We’ve been educating our community for years on how amazing our children are and how they are just as an important part of the community as everyone else. (I just want to add, when I say educating the community, I mean we start our own programs, lay the foundations, invite the community in, use social media and show everyone what our children can achieve and why they are just as important as anyone else). Because of this education, major strides have been made, but we still have mountains to climb and needles to find.

So, what is it like to be the parent of a special needs adult?

It’s priceless!

The most important life lessons we’ve learned are because of our journey with our son Max. He has helped us become better parents for our typical developing son Harrison.

We are more patient, more creative and less judgemental. We are more accepting of others and most importantly, more determined to help foster change to make Max’s life and the lives of his peers better.