When my son was about 9, I was told by an expert in the disability field that ideally, I needed to start working on his transition to adulthood when he turned 14.
WTaF?
I was barely holding on trying to figure things out with all of the childhood stuff (therapy, schooling, development, growth, progress, goals etc.) and before he’s even close to adulthood and I’m supposed to take that on now too? I didn’t think it was possible to feel even MORE overwhelmed but there it was.
When you listen to parents of kids with disabilities speak about their kids turning 18 and transitioning into adulthood you’ll hear things like:
I’m terrified…
I’m dreading dealing with all of it….
I’m just pretending it’s not happening for now….
It is seriously one of the most daunting times in a Forever Parent’s journey – emotionally and logistically.
Many parents are shocked at how “different” services are when their child transitions into adulthood. We get comfortable with FAPE (Free and Appropriate Public Education) and having schools care and educate our kids while they are in a public school setting. That same mandate does not exist once a child ages out at 21 years of age.
There is no mandated program for care, therapy, housing or supports. Depending on where you live, there may be waiver options but even those are likely to have wait lists. And if you are able to access programs, they are more piecemeal vs. comprehensive. Employment is one program, financial assistance is another, housing is another, hourly supportive care yet another etc.
I’m not writing this as a doom and gloom article. I’m writing this so you are not surprised by what you will find as your child ages into adulthood and you can start creating PLANS and STRATEGIES now.
The worst place to find yourself is surprised by the situation and ill-prepared for how to deal with it
There are governmental programs to apply for but that is a process that can take months (and even years). There are legal protections to consider and everyone has very clear opinions about those options but we don’t need opinions, we need objective information and a solid road map for navigating this transition.
We spend 18 years learning, understanding and navigating a support system that works in a very specific way. Suddenly, that system ends and it’s time to enter into different systems and it feels like we’re right back to where we were when our kids were first diagnosed and entering things like early intervention and IEPs.
The unknown always creates a bit (or a lot) of anxiety and stress. Now you don’t have to be in the dark about these systems and you can arm yourself with information, gain confidence in your planning and receive support at the same time.
So, back to that pro-tip I received when my son was just 9 years old.
All I can say is YUP. She was 100% correct. And I’m so glad she put that in my ear because it served me and my son well.
I’ve been thinking about his future and devising potential ideas and goals for years. I had a lot of time to learn what systems were available to me locally that served adults so that when my son did turn 18, I was waaaaay ahead of the learning curve in getting his systems of support set up.
This extra time also allowed me to not sit in a space of panic or fear about the future. Where will he live?- – – let’s make a goal and a plan. Who will help care for him? – – – let’s make some goals and get a plan going. What does he want to do with his life? – – – let’s really take some time to allow him to show us what his interests are (vs. always working on educational/therapeutic goals).
That extra time was a luxury, not a burden.
Our kids will spend 2/3rds of their lives as adults relying on adult support systems. I created a course offering which will help you with this transition to the “adult zone” so that you too can sit ahead of the power curve vs. being overwhelmed by it. You’ll still have a lot of work to do but this course will provide you with foundational information and a roadmap to get you started.
Adulthood arrives whether we are prepared for it emotionally or not. That seems scary but not as scary as knowing that it’s coming and not taking advantage of opportunities to learn, plan and strategize how to navigate your child’s transition. And THAT lays the solid foundation for the rest of their lives and the rest of your life as their Forever Parent.
