Brick Life

Guardianship

by
Kimberlee Rutan McCafferty
January 22, 2021

In just a few short months my eldest son, who is severely autistic, will turn eighteen.

I’m having trouble wrapping my head around this, that I will be a parent to someone who is an adult.

Because he is severely autistic my husband and I began the guardianship process this week with our lawyer. We felt ourselves to be pretty well-informed, and even so, it was daunting. In the next few months in addition to applying for guardianship, which allows us to make important life decisions for Justin after he turns eighteen, we will also apply for SSI, Medicaid, and begin the application process for the DDD, the entity from which he will receive services after he turns twenty-one.

The years turning eighteen and twenty-one are critical in the disability world for many young adults. Jeff and I want to make sure we do everything right, and the lists of what to do are long. That part is a bit overwhelming, but also thinking about Justin’s future is overwhelming too. We’ve been told we’ll be old enough to get him on the list for residential care next year, and that the waiting list for a residential budget is about twelve years, which puts us pushing seventy when he will probably go into residential care. We’re nowhere near ready for him to leave us so that is fine, and frankly it’s difficult to think about all the decisions that will have to be made to make that shift.

I just want him to have a good life even after we’re gone.

I’m hopeful we can come up with something that works for Justin. I have several friends with adult children older than my boy, and I’m sure I’ll learn a lot from them as they make these choices. I’m hopeful there will be good options as we’re probably going to continue to reside in the Garden State, and since there’s so many autistic people here I figure good residential options will continue to be created to meet the demand.

I’d like him to be somewhere where he’s safe, and happy. I hope he has a day program he enjoys, and lives close enough to us that we can continue to take him to the beach, Great Adventure, and the boardwalks that he loves. We worked so hard to give him activities and leisure skills that he likes, and I don’t want him to lose those opportunities.

So as we dive into this next chapter of his life I remind myself that we need to take this one hurdle at a time, and we have people who can help us. Back in the day when Justin was really difficult I tried to tackle each issue separately so as to not get overwhelmed, and we need to remember to do this now.

I’m taking a deep breath as I plunge into phone calls, forms and paperwork. I have hope that it will all turn out well.

It has to, because he deserves that.

And I have faith that it will.

For more on my family visit my blog at autismmommytherapist.wordpress.com

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