If you are a parent of an adult with autism or you teach students who are getting ready to graduate, then I invite you to join me on a journey this summer as I strive to find more independence and better quality of life for my son and for my family. I know it will be messy and not very pretty at times, but I can promise you it will be honest.
The honest truth
There are too many families struggling in an isolated world with their adult children who have graduated from school to a life of….. nothing. That is such a terrible thing to say and admit as a parent and as a teacher, but it is the truth for so many families, including mine.
I have spent countless hours and explored so many services only to find my son, Jimmy, still spending almost all his time in his room on his iPad. I have trained so many staff members only to watch them leave because “I’m not paid enough,” “I’m bored,” or even worse, “I don’t feel safe.” And, those were the one who were honest.
Taking a break
So, we took a break. I stopped looking for paid staff come in the home (I had none currently employed). I cancelled all related services (the few remaining) and just took a breath. We gave up all semblance of a schedule, and just took one day at a time. I would work 10-12 hours a day on my business (from home), my husband would travel the state throughout the week for work, my daughter went back to college, and Jimmy grabbed his iPad and disappeared into his room. This has been our life for the last 2 years.
Not what I had planned
Don’t get me wrong, when Jimmy left school, I was determined to help him find employment and lead a meaningful life. I spent a year jumping through everyone’s hoops, setting up countless meetings, creating mock employment scenarios to practice. I worked really, really hard. But, in the end none of it worked. The team agreed that there was really no progress being made. In fact, Jimmy’s behaviors had become so challenging it was no longer safe to take him into the community let alone into a workplace. So, I took a break. We all took a break.
But then, this month, I was convinced to meet with a behavior specialist, and something sparked again. I had come to accept our life as something we could all sustain and be happy with. But what if there really could be more?
So, I have decided to lean in once again into this journey. And, I am inviting any of you who are interested to come along and listen in. My commitment to myself is to truly go “all in” on this experience. I know it will be messy and painful at times. I know there will be more failures along the way. But I also know this is the reality of living with autism for the rest of our lives.
I know I’m not alone
I know there are many of you who are either living this right now. Or, you are terrified of those years coming when there is no longer the safe haven of school. Or, you are a teacher who is truly interested in what things look like when students leave and are now the 100% responsibility of their parents. Parents who are often exhausted, scared, and juggling jobs with an adult at home who can’t just go to a sitter or daycare.
If you are interested in coming on this journey with me this summer of 2020, then sign up below. I will be sending out an update every Monday via email. I promise it will be honest. I will share the good and the bad, and my intention is that you can learn from my mistakes and replicate my wins. Finally, this is a very lonely journey. I know it would help me tremendously to share it with others as well as be able to hear how other families and teachers are navigating similar challenges on their own terms.
I hope to see you on the inside very soon.
Stay well, stay happy, stay positive.