A couple of weeks ago, Seth spent some time with his Nana and had the opportunity to go ‘work’ with her. He helped clean, carry things, and talked to customers. The managers of the store thought he did such a fantastic job that they ‘paid’ him with a gift card usable at a local grocery store chain. He was so excited to have a boss, and a place to work, and to get paid. He safely tucked his gift card away in his wallet and went off to camp for the week. I expected him to forget he even had it.
But I also keep forgetting how much and how fast he’s growing up.
Yesterday, he and I went on some errands and before leaving the house he grabbed his wallet and told me he wanted to go use his gift card to get lunch. Um, Sure, ok. We can do that. We ran our errands and stopped by the grocery store deli where he bought an 8pc chicken and two large sides. As we were leaving the store…
Seth: I did it! I bought my lunch!
Me: Yea, not just for today, either, but lunch for the whole week.
Seth: Yep, I’m a man now!
Me: (silently chuckling) Yea, you’re a man now.
Let me pause right here to say that I was only half listening at this point and my responses were rote. Yep, sure, uh huh. It was hot, I was exhausted and just wanted to get home. The deli at this particular store was terrible, the service took forever, I was done. So when he declared that he was now a man because he bought his own lunch, I didn’t think much of it outside of how cute a statement it was. But then,
Seth: That means I can walk home from the store by myself now.
Me: Uh, no. You’re not that much of a man yet.
Seth: Oh yea, ok. I have to be 17 like my brother then I can be a man and walk home by myself.
I’m now fully engaged in the conversation. This wasn’t just my 15 year old ‘little’ boy with Down syndrome being cute. This was my 15 year old teenager with Down syndrome wanting to be treated like the adult he’s quickly becoming.
That’s where the hiccup in the road is.
As a parent of a child with an intellectual disability, walking that line between keeping him safe and letting him grow up is doubly precarious. It’s a tightrope that constantly moves; sometimes it’s only 5ft off the ground and at other times it’s 100 feet in the air.
And sometimes it’s swinging about wildly in a hurricane!
Walking home from the store or our local park is not outside Seth’s abilities. He knows the way. He knows to look out for cars. But we don’t let him do it. In fact, there are many, many things that he is perfectly capable of doing, physically and intelligently that we don’t let him do.
And the reason for that is due to a specific fact of life that surrounds many, many people with intellectual disabilities.
Seth is gullible.
Everyone is his friend. Everyone loves him. He trusts EVERYONE.
Gullibility, as it was discussed in my college Special Ed course, is the overwhelming tendency for individuals with intellectual disabilities to believe that everyone and everything around them is looking out for their best interest.
Seth does not know a stranger. Everyone is his friend. Everyone loves him. It never, ever occurs to him that someone might be lying to him, being mean to him, or not like him. Even when me, his Dad, or brother picks on him (or him us), it’s done in a loving, family way so that’s how he sees it when others pick on him. He never sees it as malicious.
It’s possible that if we were to let Seth walk home alone, or hang out at a different part of the park than us, or whatever, that he would be fine. He may not go with someone he doesn’t know if they were explicitly asking him to do something he knows he shouldn’t. He may not get into a strangers car to ‘get a ride home’ only because he ‘wants to be a man and walk home alone.’ But I don’t doubt for a second if he met someone he liked and they were sly in their efforts to get him to do something, he’d do it. Without hesitation.
Because everyone is his friend. Everyone loves him.
Unfortunately, Seth is 15 now and wants his independence. He wants to be allowed to grow up. He sees his brother, who is only 2 years older, go off to work everyday and have all this freedom and he wants the same.
We bought him an ipod for his birthday and have worked to give him freedom in that and other things inside the house but I’ve yet to figure out how to let him be independent out in the world. It’s a tough spot.
Our hope is that when he finishes high school he’ll be accepted into one of the many wonderful Life Skills college programs (Clemson LIFE being our first choice!) and he can learn to live independently. Our hope is that as he grows older, he comes to understand that not everyone is his friend or has his best interest at heart. I want him to live a full life and I hope that involves more than just a safe little bubble that allows him to have some independence. I want true independence for him, as much as is possible.
My ‘forever baby’ is a teenager now and I see the same struggles in him that I saw in his older brother. He wants to grow up. He wants his freedom. He doesn’t want to be told what to do all the time. He’s pulling away from us and becoming more emotionally independent. All the signs of adolescence…
…and I have no idea how to let him grow up.