OK, this isn’t meant to be a pity party blog post. This is just to share what it’s like, at least for me, to be the mother of a child with intellectual disabilities.
Spencer turned 13 last month, a big step for any kid. But for a kid with intellectual disabilities it raises even greater issues. You see Spencer is handsome, tall and strong. By outward appearances, no one would ever know anything’s wrong. And, because he is now a teenager, people expect him to behave in a certain way. They don’t realize that intellectually he’s really the equivalent of a 6 year-old and that he doesn’t always understand socially acceptable behavior. If this is hard for adults to realize it’s impossible for kids to realize. All kids, that is, except his sister who really is 8 but has the maturity of a 15 year-old at times.
She is fully aware that her brother has disabilities. She might not understand completely what that means but what she does understand is that Spencer behaves in ways he shouldn’t and kids constantly call him weird or make fun of him behind his back – sometimes right to his face. This upsets her and now she too is always on guard trying to protect her brother while also dealing with the feelings of embarrassment he causes her around her friends. I’ve tried to explain to her that unfortunately people don’t always understand her brother has a disability. If he had some physical disability it would be easier for them to deal with but this is an invisible affliction and people just don’t get it.
As I’ve written before, because his school is 50 miles away, he doesn’t really have friends in town. So, when we are out at social functions Spencer is on his own. I know he’s lonely. I know he wants to be included but he’s just not. Last night we were at our town’s 4th of July celebration. As my fiancée said, it was like a giant block party. I saw so many old acquaintances whose sons used to be Spencer’s friends from various activities. That’s when the differences are so striking. Here are these young men, independently and securely mingling, laughing and socializing. They have far surpassed Spencer long ago. We saw his one friend from when he was in kindergarten who is still so wonderful and friendly to Spencer – I will forever be grateful that Spencer found such a kind soul who is able to see Spencer for who he truly is, an equally kind kid.
But social situations like this are never easy for me. I need to constantly be on guard as to where Spencer might wander to or how he might inadvertently get into a fight with another kid who was taunting him. Spencer’s wonderful with little kids who seem to gravitate towards him. And, when adults take the time to sit and listen to him, he can be charming. My friends are wonderful – they accept Spencer and try to put me at ease. But it’s difficult for them to understand when their kids are running around playing and I’m torn between monitoring Spencer and wanting to spend my time with him since, at these events, I’m all he has.
Some people might advise me to just not put myself into these situations and not go to events that, because of the noise and commotion are particularly stressful for Spencer. But, I have two other children to consider and (gosh darn it!) Spencer wants to see fireworks! But I look around the crowd of hundreds that are seated with me on the field and think, “where are the other kids like Spencer?” Where are one or two kids who could be his friends and understand his issues? Yes, there are probably some parents who would rather avoid the stress of an evening such as this but there has to be a way to make it fun, safe and secure for our kids!
I’m out of ideas. For my friends from last night who supported me, thank you – I’m forever grateful for your friendship and kindness to my son. For other parents struggling with my issues, what are your solutions? I’m open to any and all suggestions!