November 2008

From our family to yours…


The California wildfires were tragic, as hundreds of people lost their homes. One story hit me in particular. That of Jonathan Reyes. He’s an autistic boy who lost his home in the fire, along with his prized possession–his Hot Wheels collection. It was heartbreaking for me to read the story of how he and his family sifted through the ashes of the home. While Jonathan’s home cannot be replaced, thankfully part of his world has been. Mattel sent the boy a bunch of Hot Wheels cars, and others have offered donations to help.

Thing is, I think this is an autistic parent’s nightmare. I often worry if something happened and we had to leave our home. Heaven forbid in something unexpected like a fire. But what about a scenario many more people are facing right now, like the loss of a home due to foreclosure. It’s hard enough sometimes just getting through life, worrying about the basics, but when you tie in the particular needs of a challenged child, it can be even more complicated, and scary. In our case, Raif can’t even communicate well. Right now his frustrations over seemingly insignificant things comes out in the form of aggression. I can only imagine after something like that. Not merely the loss of a home, but perhaps the loss of a family member or some other radical change. While you hope and trust that something like that won’t happen, reading stories of those who have walked that path certainly gets you thinking…and praying.

I’m not really going anywhere with this. Any family worries about the possibility of the unexpected, of a tragedy. When you have a large family, that fear is a bit more pronounced because the reality is that housing so many people, and simply providing for their needs, can be difficult under good circumstances. Though, I don’t know if any of that really compares to that nagging of the idea of your child, who already is lost in the world of his/her disability, having to deal with such situation. I am just thankful that we’re not facing that situation…yet.

There but for the grace of God go I.

I went to grammar school with Jenny McCarthy. Well, actually, I was a couple grades ahead of her, but I saw her and knew of her and her family. Anyhow, I say this not to brag, because honestly…who cares? We weren’t friends. Though I’ll admit there was quite a buzz in my community of friends when she appeared in Playboy. Everyone wanted to brag about knowing her then. Though, I was on the other end where I disapproved of the whole Catholic-schoolgirl nudity thing and just ignored it.

So, why am I mentioning this? Because despite my 1 degree of separation to the star, I certainly never thought we would have any connection whatsoever. I mean, her in Hollywood, me in my little Chicago-suburb home with my big family. There were times I would see her on t.v. and think of the fact that we had similar roots starting off, and how we lived in two totally different worlds. I often thought if I met her again, there would be absolutely nothing we had in common, nothing we could talk about (save some slight reminiscing about our old neighborhood). Then, of course, Jenny came to the forefront of the autism scene.

I have to admit, it has been a sad and exhilirating ride watching this woman grab the bull by the horns and bring autism into the public spotlight. I know that she is but one of many, and there are numerous people who have championed this cause. But the bottom line is that through her notoriety and fame, Jenny has brought the cause to a lot of people who would have ignored it otherwise. Whether you agree with her or not, you have to admire her.

I have to admit, seeing her picture with Evan on People recently, I was happy for her. Happy she had found her cure. I say “her cure” because I know that gluten and cassien-free is a miracle for some kids, but not all. For us, it didn’t work, and it was a hard reality to face when you hear such success stories and have such hope. But there are so many paths to autism, and many more paths to a treatment and (possible) cures. Living with a husband who has Asperger’s, I feel my kids are genetically predisposed, so our journey is a little different, and our path to a treatment not the same. Still, that doesn’t mean I can’t feel the joy for those who do find the answer they need.

I guess I am just writing an open letter to say, “good for you, Jenny.” While we walk in far different circles, I can say I’m glad to have known you, and I’m really happy for you that you found the key to getting your son back.