After talking to a friend yesterday, I realized not many people truly understand what it's like to live with two toddlers on the severe end of the Autism spectrum, developmental disabilities, rare diseases and epilepsy. While our house is filled with love and laughter, it's also filled with tons of therapy appointments, doctors, tears, stimming, hitting, kicking, yelling, crying and fear. G&L are awesome and I wouldn't trade them in for anything, but I'm going to be extremely blunt. This is not the life I imagined. I never imagined having to hold my children down so they don't hurt themselves or someone else. I never imagined having weeks filled with therapy, appointments and meetings. I never imagined my children wouldn't be able to say momma or dadda. I never imagined my children having to go to a school for people with Special Needs. I never imagined having to turn down play dates and parties and always having to be the first ones to leave because my children are overstimulated and about to have a meltdown. There are a lot of things throughout life I never imagined. If I could never imagine them, I can't expect friends and loved ones to imagine them.
Why do I turn down play dates?
It's pretty simple, G&L have a hard time being around other children. They love adults and will snuggle with just about any adult in there path, but they don't handle other children well. L had a few select children he likes (such as the W triplets) while G sticks to adults or stay in a corner and plays by himself. They throw things and hit and yell and scream. I break out into a sweat trying to calm them down.
Why are we the first ones to leave birthday parties?
Besides the fact that G&L don't participate in group activities, L can not sit still for more then three seconds. Unless there is somewhere for him to run and be in his own world, he can not handle it. G normally just isn't really sure what's going on around him. He gets confused and sometimes agitated. We've been able to figure out when meltdowns are about to occur and high tail out of there before people have to witness the wrath of G&L and possibly ruin someone's party.
Why do we never go to activities at parks unless the hubs or another adult comes with us?
L is a runner, he is fast and he has no idea of his surroundings. He could get lost in a millisecond. It's my worst fear. G can easily wonder off in the other direction. Although not as fast as L when he sees something he wasn't to check out, he can't stop himself and calling out his name will not stop him, as he doesn't respond to his name. When they are stopped, meltdown ensues. These meltdowns I speak of aren't your normal toddler tantrums. They can last for hours and involve hitting and throwing. It can throw their entire week off and take a lot of work to get them recentered.
Why are we so strict about their schedule?
They thrive on a schedule, as do most with Autism. They know what to expect and what's going to happen next. When their schedule gets thrown off, it throws them for a loop and it can lead to a meltdown. They know we get home from therapy, eat lunch and take a nap. If we happen to do something out of that order, they throw themselves and cry. I truly believe they have an internal clock that lets them know what time they are supposed to do everything.
Why do they do strange things?
It's simple. To them, it's not strange. It feels good. It's called stimming. G stands on his head, screeches in high pitch tones, flaps his arms, laughs when nothing is happening, covers his eyes, twirls and tightens his muscles. He does it when he's excited, scrared, bored, etc. It just makes him feel good and it's comforting to him. L covers his ears, spins in circles, stands on his head, follows lines, jumps, bangs his head and runs up and down the hallway. To him it feels good.
Why don't we take them to restaurants very often?
They have trouble sitting still, G throws food at people and they both have strong food aversions. G more so then L. If you order something and you're sitting next to G, he might start gagging just by looking at your food or smelling it. Worst case scenario...he throws up, and then no one eats.
There you have it. A little look into why we do things the way we do. Even though we stick to schedules and have to avoid certain situations, we still have fun! We find activities they like, and that they can do. Everyday brings something new. As their parents, we are tired, coffee doesn't have the same effect it once did and thankfully the good times outweigh the hard times. Even though I never imagined this life, I wouldn't change it for anything.