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Yikes- It Happened!

Our sons graduated from the school system this past June.  We planned for this transition for years. It still sucked....a lot.

Our planning began in their early teen years. In 2016 we opened Beloved Bath so that when our sons, Justin and John, graduated from their respective schools, they would have the opportunity for meaningful and joyous employment. As autism moms, we knew that the landscape post-graduation was bleak, especially for kids like ours on the profound end of the autism spectrum. Various studies cite an under- or unemployment rate between 80-90%. Our boys have worked side-by-side with us from the beginning. As our business grew and expanded, they were joined by many coworkers and trainees across the autism spectrum. This journey has been magical and deeply rewarding. We are so grateful that our boys and many others have the ability to spend time doing what they enjoy.

Based on all of our planning and preparation that was years in the making, we thought we were ready for the transition. Our incredible sons both made a smooth leap from school to the adult world. For us, as moms, the time period leading up to graduation was more challenging than we could have imagined back in 2016. 

I'm embarrassed to admit that when the topic of Justin's graduation came up in conversations,  I quickly spat out "don't say congratulations!" That is an awful response that minimized his many amazing accomplishments. It also put the focus where it did not belong- on me and my fear. My anxiety was sky-high. I felt adrift and unsure what was next for Justin. I had a lot of mom guilt that everything was not in place for him. Touring adult programs left me underwhelmed and over anxious. I did finally find the grace to say "thank you" even though any mention of the impending milestone triggered a myriad of unwelcome emotions.  It did not feel authentic to accept a congratulations for something I had been dreading for Justin for years.

Pat felt sad, unsettled, and untethered.  John spent 18 years at his school. Pat viewed the school community as her extended family. Most of her life as an autism mom was in partnership with the school.  She likened the transition to a divorce. No longer will John's former school be a part of the Miller family's day-to-day life. That is a giant change that leaves a gaping hole. Pat felt gutted on the last day of school. 

All of our different emotions were tied to the fact that this was not your average graduation. Milestones are tricky for us. For typical kids a graduation is a new beginning, more independence, an expectation of a bright future. For parents, it is an easing up on the day to day role as children move to new jobs, college, military, etc. The paths ahead are predictable and expected. This is even so for parents of emerging adults with less profound disabilities. Conversely, we are faced with our kids losing the programs and people who have been constant over the years, with no clear path or prescribed route. The rug is pulled out and the systems that supported our children disappear. The needs of our children do not change upon graduation. 

In our world, this time period is almost universally called "falling off the cliff." It is losing the services and supports that go along with life as a student and free-falling into a world with limited resources, few programs, and a major staffing crisis fueled by poor pay in the adult services world. POOF and the world as graduates know it changes in a day. So many kids like ours do not understand what has happened. Many young adults transition from school to their parents' couch due to a lack of options. This is completely unacceptable. We are grateful and blessed that Justin and John have opportunities at Beloved Bath and are participating a few days per week in a great day program. 

The transition was hard in large part because the infrastructure in the adult world is tenuous and spotty compared to the school system. If the opportunities that awaited adults were abundant and excellent, Pat would not have felt like she was getting divorced and I would not have been so sassy about graduation.

A lot needs to be done to change programming for adults. Every person should graduate school and have multiple options just like their typical peers. There should be an abundance of programs that fit the interests and skills of participants. Professionals should make a salary commensurate with special education teachers, not hourly wage earners. Working with high needs individuals requires special training and commitment. More programs need to open and more businesses need to hire individuals with disabilities. 

We realize the current state of affairs is rather grim. What does give us hope is the fact that when our sons were entering the school system, there were not a lot of quality educational programs and now there are. This change is due to the advocacy of parents fighting for a better future for their children. Now these kids are growing up and the fight is on again.  The autism numbers continue to grow exponentially so the need is greater each year. We hope that with continued parental and professional advocacy coupled with community knowledge and involvement, we will see the changes needed for all of the upcoming graduates. It is our hope that in the not too distant future, parents of graduates will feel optimistic and their children will have many vibrant options ahead of them.

xoxo

Pam and Pat

 


2 comments

  • I volunteer at Creative Living Community of CT in Coventry, CT which is working to build an inclusive pocket neighborhood for adults with or without disabilities can live. It is a small working farm with a farm stand, chickens and eventually alpacas to give work experience and jobs to the residents. It was established by a mom who wanted to make sure her son with ID and autism would have a safe home when she and her husband were gone. Group homes were not an option. They wanted more for him. We are hoping to break ground for the neighborhood soon. I love what you have done with Beloved Bath and love your products. I hope our vision has the same outcome.

    Sally May
  • ❤️

    Alisa Rosenberg Schwartz

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