I had no idea. These are the words people say to me when they have the rare moment of actually seeing, sharing, or living with some of the really super-hard behaviors of children on the spectrum or ADHD. They are truly shocked and surprised at the intensity and extremes of the tantrums, fits, or screamed verbiage.
It is hearing those words and that moment, every parent who lives with these behaviors daily, weekly, or monthly feels even more isolated. It becomes even more clear how different our child and lives are than the mainstream.
Ironically, we parents of spectrum-kids already knew "they had no idea." Because, how could they? Our goal has been and is to get through each day minus a breakdown (including our own.
Careful steps are taken to insure each day goes as smoothly as possible. Any indication the child is about to blow and we whisk them out of that scene as fast as possible. Before any family party or new event, husband and wife decide whether to bring two cars and who will be the designated caretaker. Of course, timing is everything. But sometimes, it happens, the terrific tantrum or fantastic fit.
And...I must admit, I had no idea it would be this hard.
Saturday, November 21, 2009
Wednesday, November 4, 2009
Share and Share Alike?
The other night on Facebook, I posted things I thought were the worst. I said Evite (it was frustrating me), self-check out at the grocery store (it just irritates me), and then homework (my kids', not mine). The worst is really a parent or child dying (I've lost my mom and others close to me).
I also really do not like clowns. Seriously, very afraid. However, I do not share that tidbit about me with many people. In fact, at this point, just my sisters and college roommates know that fear. (The college roommates pasted clowns everywhere in my dorm room, my sisters just laugh and say you better run, there's a clown).
My question today is how much to share with the people you kind of know? But primarily, how much to share about your child with people your child knows but you don't. Ideally, your child will be friends with them at some point? I don't always tell other people Builder is ADHD or on the spectrum. Of course, my close friends all know.
Yet, my life would be so much easier if everyone knew how Builder thinks. It isn't wrong, it is just different than many others. He knows he has Asperger's. I'm not sure how much he understands it; but he knows it makes him special and unique. He has talents and skills the majority of his friends and family do not. He also has limitations, mostly social. However, it is impossible to let the world know.
So, as much as I would love to print postcards with helpful hints, I don't. Certainly, considered it. I feel we need to help Builder understand how the other side thinks. It doesn't seem right to say he has Autism. It sounds like a disease. I prefer to say he thinks differently. His brain works in a distinct way.
Much like mine. I just can't get past the face paint, red nose, and really big shoes. I just hope I never have a clown behind me in the self-checkout line at the grocery store.
I also really do not like clowns. Seriously, very afraid. However, I do not share that tidbit about me with many people. In fact, at this point, just my sisters and college roommates know that fear. (The college roommates pasted clowns everywhere in my dorm room, my sisters just laugh and say you better run, there's a clown).
My question today is how much to share with the people you kind of know? But primarily, how much to share about your child with people your child knows but you don't. Ideally, your child will be friends with them at some point? I don't always tell other people Builder is ADHD or on the spectrum. Of course, my close friends all know.
Yet, my life would be so much easier if everyone knew how Builder thinks. It isn't wrong, it is just different than many others. He knows he has Asperger's. I'm not sure how much he understands it; but he knows it makes him special and unique. He has talents and skills the majority of his friends and family do not. He also has limitations, mostly social. However, it is impossible to let the world know.
So, as much as I would love to print postcards with helpful hints, I don't. Certainly, considered it. I feel we need to help Builder understand how the other side thinks. It doesn't seem right to say he has Autism. It sounds like a disease. I prefer to say he thinks differently. His brain works in a distinct way.
Much like mine. I just can't get past the face paint, red nose, and really big shoes. I just hope I never have a clown behind me in the self-checkout line at the grocery store.
Subscribe to:
Posts (Atom)