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2. Matty will rip any paper given to him. Including money. He just can’t stop himself.
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| This just happened yesterday. He said he didn't need it! |
3. When I am out in the community with Matthew, I’m always “on” trying to guess his next unpredictable move. So, if you see us out and I look distracted, you’re right. And if you and I tried to have a conversation during this time, I’m sorry but I didn’t hear a word you said. Call me after 8:30pm when he’s asleep – that’s when I can concentrate!
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| Matty and Kristen - one of his fave babysitters who is only 22 months older than him |
4. Matty will always need a babysitter. I guess the job title changes as his sitters become closer and closer to his actual age, and soon it will be companion or support staff. We will always need help. Last week we paid close to $100 to see a movie (movie tickets, Greg’s popcorn, and babysitter fee).
5. When I watch what other kids his age (and younger) can do independently – even something as simple as walking alone to the school bus stop, my heart hurts. It’s like being in physical pain. I have to force myself to focus on something else immediately. I’ve learned to be good at this over the years.
6. I will always wonder if there is more I should be doing to help Matthew. Does he need more hours in speech or OT? Would a different school setting be better for his unique needs? Is there something else out there that can help him - something I don't know about yet? What I’m doing never seems like enough. (This is a common feeling for parents raising a child with disabilities.)
7. I have to literally “hold it in” if I am out in public with Matthew and need to use the restroom. I can’t leave him alone (so if you see the two of us out, please offer to hang out with him for two minutes while I go use the restroom!)
8. When we go places as a family, we usually arrive in two cars. We need a clear emergency exit plan. It’s really difficult for our family to do things together because of Matthew’s unpredictable behaviors. Quite often, my husband or I will leave early with him from special occasions like community events and meals with our extended family.
9. Watching someone you love have seizures is terrifying. We are so lucky to have found a medication that controls Matthew’s seizures, yet our reality is knowing that the seizures can come back anytime.
10. Matthew has taught me more about life and love than any other human. He has opened my eyes, my mind and my heart to the fascinating world of autism. What a marvelous tour guide I have.
Amy McCoy is the author of the Little Big Sister book series for elementary school aged readers. www.littlebigsisterbook.com
