Why isn’t there a book to tell you what to do when your special needs child becomes an adult?
This is primarily a blog about vacation homes and down east Maine. And there is a lot going on in the industry right now. Those who casually rent out their homes might not have noticed it, but those who rent their homes as a business are certainly going through a time of transition now. And I will get back to that topic very soon. But I haven’t had time to get into the thick of it lately. At this moment, I have some more personal issues to deal with. And with the start of Autism Awareness Month in April, I thought I’d share what our family is doing now.
Over 17 years ago, my husband and I were foster parents and welcomed into our family a tiny, three day old, bald-headed newborn. Eleven months later, we welcomed his sister. Their birth parents were young, had mental health and drug issues and had come from horrendous childhoods themselves, so they made the oh-so-very painful decision to sign away their parental rights and allow us to adopt the siblings.
Our two children have always been “neurological enigmas” as their neurologist called them. Their first elementary school principal declared that she had never seen children like them in her 20 years plus of being an educator. Although they have been given diagnoses… because you need a diagnosis in order to get services and in order for insurance to cover bills — their actual disabilities have never been cut and dry. My son has the diagnosis of intellectual disability and is on the autism spectrum — he can’t tell you how many quarters in a dollar and has a hard time deciphering between sitcom characters and actors, but he can understand pages of high school physics homework – his only mainstream class. My daughter is on the autistic spectrum, but, contrary to the non-verbal stereo-type, she is as chatty as you can be. Because I’m her mom and I love her over the moon and back, only I can say this—she is like a gnat that is constantly buzzing around your head that slowly drives you insane. But she is a cute gnat.
My son is about to turn 18 in a few months and it’s a scary thought. Unless we take action, he’ll be able to make all of his own decisions and control all of his finances. For the past few weeks, I’ve been choreographing a dance — the dance to limited guardianship of my soon-to-be-adult son. I’ve assembled my clinical team – my son’s psychiatrist, a social worker, and a school psychologist, as well as a consulting attorney – who will prepare a report that I will use to petition the court for limited/partial guardianship. It’s heartbreaking — every parent expects that their children will grow up and leave the nest and become independent and successful. This year we petition the court for partial guardianship of my son; next year we petition for partial guardianship of my daughter.
There is a documentary that aired a few years ago on PBS called — Autism: Coming of Age. If you know of a child with (any) special needs, I recommend that you watch it. Sadly, the stories told are very representative of what we and so many other families face. The system does not know how to handle all of these kids with special needs who are aging out of the school system.
And kids like mine are difficult because they don’t neatly fit into any particular category. My son has worked at Stop and Shop for almost a year now. He is probably the hardest working employee at the store. But will he be able to support himself and live independently? Will he be able to make sure that his bills are paid? Will he be able to make healthy food choices? Will he be taken advantage of by others? Because both of my kiddos are on the cusp of the cut-offs for any public agencies, because their ‘square’ diagnoses don’t fit into neat round holes, they may never get assistance with housing or finances or other public agency supports. They may both be dependent on my husband and I as adults. And that’s fine for now – I don’t mind that. But both my husband and I are both the end of the line in our families — when we die, there will be no one to protect our adult children and look out for them. What will happen to them when they reach middle age and older?
I have heard people make comments that I must be wealthy, investing in rental properties. Ha! If they only knew! If they only could see those days when I’m pulling out my hair over $4000 due in bills and less than $400 in the bank. But with every financial move I make, I have my children in mind. I had the opportunity to purchase my last home and only did it with the plan that it would provide rental income now and future housing for one of my kids later in life. It’s four miles from the house I plan on moving to in retirement so I will be nearby to assist with transportation and activities of daily living. Coming sometime in the future will be a trust that will be set up so someone… an impartial third party, perhaps an attorney… will take over as guardian when we pass away (which will hopefully be far into the future). You don’t think about things like this when you are bouncing your cute little bundles of joy on your lap. You figure that you do the best you can to raise your children to adulthood and then you’re done. The goal being independent, successful adults.
This morning I sat down and explained to my son the process that we’re going through. He seemed to comprehend what I was telling him about guardianship and understood that I want as little control over his independence as possible. I want him to go out with friends, to drive a car if he is someday able, to go to work every day. But I also want to make sure that both of my children have the best adult life experiences that they can and if I can make things a little easier, I’ll do it. Years ago, our family participated in a documentary and one of the other fathers interviewed said something that stuck with me…I’m sorry, I can’t credit him as we were all anonymous and I don’t remember exactly what he said, so I’ll paraphrase (or better yet, watch the documentary), but it was something like, “My son will always be climbing mountains. But if I can make it a little easier on him, and maybe make one of those mountains more of a hill instead of a mountain, that would be a good thing”.