I will not stoop to an insulting level. What I have to say is about tolerance, acceptance and respect for kids with special needs.
Nobody should ever write a letter that hurtful. It describes Max as being "noise polluting" and "a nuisance." Kids make noise. That's what kids do. Nuisance is causing a public uproar about it! I remember being a kid and screaming at the top of my lungs with another girl. The problem is that tolerance goes down the second a kid is out there in a yard alone, a kid with special needs, making noise. Those "noises" are the only way my son has to express himself and play.
If Max's sounds bother someone, I'd hope that person would let us know in a respectful way. Give us a chance to handle it instead of being cowardly about it. I'd rather people bring things out in the open. Sometimes, kids come up to me and ask "Why does he talk funny?" The parents are embarrassed. But if the mom isn't going to talk properly to a child, or teach him that kids with autism are not contagious, I will! It's important to help kids understand and not be fearful from a young age. I'll tell children, "He has autism and he has trouble with speech, but you can say 'hi' to him." And then I'll have Max say 'hi' back and it's OK. I'd rather kids ask than grow up to be the sort of people who write nasty letters about autism!
Even if Max doesn't speak like the rest of us do, he understands. He reads my face, too. If I'm not all happy, he comes up to me and says 'Mommy cry?' and if I am crying he'll wipe my eyes and give me a hug. He may not do things other kids do, he may not be on a sports team, but he has a zest for life—he loves to look around, listen to music, go snowmobiling and jet-skiing with his father.
People with special needs are people first. They have every right others do. Instead of glares, I wish people would give smiles. Instead of anger toward parents, I wish people would be more understanding. Trust me, if there's behavior ruining someone else's day, it's ruining mine and I want to deal with it! When we first started trying to take Max out, we went to McDonald's because we figured it's not a fine-dining place where we'd ruin someone's dinner. I didn't notice Max was kicking the back of a seat. When a guy turned and said "Please stop that kicking" I explained, "He has autism and we're trying to take him out, we're just glad he's not screaming!" And then the guy was fine and sweet to Max. I was glad he didn't freak out, and that he listened to me.
Max has shown us there are many ways for people to communicate—he always gets his point across and he's smart. If he wants to watch a certain video, and you're not understanding him, he'll get up and hand it to you. One time, we were in the car and he was saying "twinkle, twinkle" and I said, "You want Mommy to sing?" and I could tell from the look on his face he didn't want that. Then he said "bus" and I realized he wanted me to sing "The wheels on the bus go round and round." Sometimes, it's like charades, but he gets his point across.
Max has gotten a lot of therapy over the years. It's helped him communicate, and retrained his brain so he can focus and learn and be a part of society. Before he started getting ABA therapy, at 2 and 1/2, he mostly just sat in a corner and wiggled a string or sucked on his blanket or shirt—it was anxiety, we later learned. Max's therapy has been expensive, but this is what it means to be a society: You help those in need. Would anyone consider people with cancer a burden? Or senior citizens? I come from a huge family—my father had 12 brothers and sisters, and they all had kids and they had kids. He's told me, 'We've all paid into things with our family and nobody's drawn disability, so don't worry about it.'"
Of course, we wonder about Max's future, whether he will ever live alone or get married. What will be will be. Everyone has a place in the world. Some people are meant to hold big jobs. Some people make you happy and smile. Max brings pure joy and love. He has taught me to slow down and appreciate life, as seen through his eyes. He's taught us what's important, why my husband quit his job for a year as a market data analyst to stay home and help with Max.
Everyone who knows Max loves him. He is a blessing. I think I'm lucky: How many mothers still have their 13-year-old son wanting to sit on the couch, have mommy time and cuddles, and not be afraid to show love and affection?
Over the years, people have often said to us "God only gives you what you can handle." But last night, I said to my husband, "I think God finally thought the Begleys have had enough!" The community rallying around us has been amazing, the outpouring of support is awesome. It puts your faith back in humanity: Yes, people are generally good.
