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 question seemed like only yesterday.
To the latter question, I could write a book on how I survived the trials & tribulations of raising a child with special needs and navigating the mine fields of the educational system, all the government regulations and therapeutic treatments and interventions with all their protocols. I am beyond that now as my son turns 21 and gets ready to enter…”The Real World.”
From this point forward we lose the security of the school system. Even though it was often a tumultuous ride, we always knew that from bus pick up in the morning til drop off in the afternoon, that he was in a structured environment. All families face challenges as our children get ready to enter the workforce and leave 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.
For a child with the diagnosis of Aspergers 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/employer 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 7% 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 my 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. Our young adult can’t have more that $2,000 and 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 my wife and I truly have. I shudder as I type.
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 Max. They’ve helped us become better parents for our typical developing son Harrison. We are more patient, more creative and less judgmental. 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.
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