Over the years, I’ve answered a lot of questions about our kids with special needs. I don’t mind, I’m a big believer that knowledge is power and questions usually mean genuine interest. But as our son entered his teen years, one question kept coming up that made me just about lose it every time, so much so that I’m going to let you on a secret: I purposely avoid introducing myself as a mother of a child with special needs. Don’t get me wrong, I’m not ashamed of our son, he’s brilliant in fact, I just know this ONE question is going to come up, and the fact is, I have no idea how to answer it.
The conversation typically goes like this:
New friend, “Do you have kids?”
Me, “Yes,” this is followed by an awkward silence waiting for me to elaborate, but I don’t.
Eventually, after bantering formalities back and forth, it eventually does come out that our son is on the Autism Spectrum and because he is actually incredibly amazing, I do love to brag on him, but inevitably this leads to the dreaded question EVERY parent like me hates, “Do you think he will be independent in the future?”
Seriously? I have no idea! I’m just trying to get through the day without setting my hair on fire. I really don’t want him living in my basement when he is 40, but I also can’t stand the idea of getting a phone call in the middle of the night that he needs help. We are working on cognitive therapy but today I am demanding a refund on the past 12 years of behavioral therapy. This week he studied history, Spanish, literature, and independent living but he also can’t remember how to operate a key and door so right now he is locked outside yelling at me through the RING doorbell, so yeah, ummm…I’ve got nothing.
Let me translate this conversation into a language that might be more “normal”.
Me: “Do you have kids?”
New friend: “Yes, a boy he’s 15, just started driving and he is in competitive sports, has lots of friends, school is awesome…”
Me: “That is lovely. What about your ‘typically developing’ son’s future? Do you think he’ll make it through college on a full ride scholarship in just 4 years? Do you think he’ll live on his own or do you think he’ll be able to pay off student loans while living in your basement?”
Crazy right? WHO ASKS THOSE QUESTIONS?!
Parents raising a child with special needs don’t know what the future holds and as you can imagine, it is terrifying. We mourned the loss of that ideal and “typical” future for our kids when the diagnosis came, so questions like this can trigger that emotion of loss. We hope you understand that you also have no control on what the future holds for your child either, but deep down we pray that you never know the level of support in adulthood that we eventually may not be able to provide our own child. So wouldn’t the question be less isolating if we asked each other, “What are your child’s hopes and dreams for the future?”
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Fellow mom of two exceptional children-both on the spectrum but on almost opposite ends. We just helped one move out with a roommate but the other will probably be in a group home when she finally gets to the top of the list in 6 years. I agree-I’ve stopped underestimating my logs years ago. Every time I’ve thought “They’ll never be able to…”they’ve proven me wrong.
Thanks for sharing! We need to know we aren’t alone!