Our family’s journey
Fight the good fight.
That’s always been my philosophy for managing the autism journey. My son Terence was diagnosed at age 4 with PDD-NOS, pervasive developmental disorder, not otherwise specified, which is now called the autism spectrum.
Throughout his life, I’ve advocated for him in many ways. Fighting for his right to be included in “traditional” classrooms and social activities, as well as ensuring his learning styles were considered by the various teachers along his path, some fantastic, others, well let’s just say they kept me on my knees in prayer.
Nicole Golston in her office
Yes, I garnered a reputation as a “Difficult Parent,” which in my view meant I wasn’t just dropping my kid off at school, I was involved: At every Individual Education Plan (IEP) meeting I was recording each session and, as needed, bringing the family- paid educational advisor, Patricia Glenn, to the table. Her presence ensured that our educational concerns or support requests were heard and a positive solution was negotiated.
Learning to work
Later, his high school experience centered around my desire for Terence to work and his desire to be independent and “not live with my mother.” With the help of a fantastic transition liaison, Jamie Shailer, he gained experience in several work environments like pizza places, the library, and restaurants, and with experience at a technical school under his belt, he was on the road to employment.
Or so we thought.
Imagine my horror when I learned, during the pandemic no less, that there were few opportunities for employment for persons on the autism spectrum AND that my son lacked some essential skills that would make his transition to the work world successful.
Terence aged out of the public school system at 22 with few prospects for employment.
I felt like a failure.
Where is the work?
All that fighting was for nothing. All those IEP meetings and money spent advocating for inclusion and opportunities felt wasted. Why didn’t I know this was the reality for persons on the spectrum with the ability and willingness to work? Why didn’t someone warn me? Why hadn’t I researched the topic?
Then I got angry.
The more I researched, the more I learned the ugly truth about the lack of work prospects for people with special needs, in particular those on the autism spectrum.
(Statistic)
Nicole with Destiny, right and Terence
Now, we are regrouping. Terence is 24 and in a work training program with GoodWill Industries with funding from the State f Georgia. It’s a start, but he is a long way away from gainful employment and staying employed, which has even worse statistics for success.
And while I can’t turn back the clock, I can share our journey and communicate the things I would do differently if I knew then what I know now.
Welcome to Nicolegspeaks and the series of communication vehicles to empower and share opinion, experience, and news on parenting a child or adult on the autism spectrum:
Nicolegspeaks the blog — These are my thoughts on parenting, work, and occasional rants on the injustice of it all.
Workinitwithautism the podcast —This podcast in story-telling format focuses on the journey of families with an adult on the autism spectrum. Millions of families are and have been in our situation, but I don’t know their stories. This podcast will share their experiences, so we all can learn from each other.
Financingautism the podcast — Raising children cost money. Add in the additional care and support needs of children and then adults on the spectrum, and household finances are a big deal. For folks like us who are denied most federal and state funding, money moves impact every area of our lives, including career. This news and interview podcast will explore all things money from government funding, trusts, wills, career and investing. Plus, the best advice around the web will be shared on each episode.
Want to know more? Feel free to contact me.