October 29, 2013 by Marj Hatzell
A long time ago, in a galaxy far, far away, I had two boys in two years and both of these boys eventually ended up in early intervention for developmental delays. When they were first diagnosed I knew NO ONE ELSE with children with delays. Sure, I knew plenty of folks from playgroups and mom groups and the children’s program at the library but I was never able to really connect with those people. Despite the fact that I have a degree in Special Education, I still didn’t feel like I knew what I was doing.
I was really fortunate when Ian’s first home therapist came to work with him and told me she had a son with autism and other disabilities. When he started full-time school at the tender age of three, I was thrilled to meet other parents going through the same thing. We could share stories, have coffee, talk about the best doctors (we all had kids with other health issues) and commiserate over the lack of sleep. Having this support was super important. Sure, my family is awesome. But having other parents/families/kids/adults with disabilities to network with? PRICELESS.
Here we are several years later and it’s still important. Over the past eight plus years of boring you with the pointless drivel on my blog, I’ve “met” tons of people from the Internets. I know, I know. The imaginary friends in your computer aren’t real. In fact, you THINK you’re talking to a 41-year-old mother from the City of Brotherly Love when in fact you’re talking to a 50-year-old guy named Steve living in his mother’s basement in Iowa. Fooled you! I KEED! I really AM a 41-year-old mother from Philly. I’m so naive it never occurred to me to lie to people on the Internets. Sheesh.
In all seriousness, I know that you can’t trust everything you see on the Internet. In fact, there is TONS of misinformation out there. But this whole blog thing (for me, anyways) has gone from keeping an online diary of sorts (because I felt so isolated and alone) to writing on the Internets for cash monies to networking with other families. Other families who “get” it. You know, like disabilities?
Last week we were at Bugaboo’s special needs bowling league. This particular league is just for kids with disabilities and it is awesome. Awesome because they get a discounted rate. Awesome because they can take their time and bowl, the teams are small and all of us are in the same boat. Awesome because we all get each other. Sure, we try very hard to have our kids fully included but sometimes it’s nice just to be around other families like ours. Maybe because we don’t have to keep up appearances? Maybe because those families understand when our kids aren’t having the best day? Maybe because those adults don’t look down on or sneer at our son when he can’t handle the noise or can’t wait his turn? Someone at some point mentioned, “I’m so glad you told me about this. We love our “typical” friends but it’s so nice to be with people who…you know. Get it?”
I’ll never stop striving for Bugaboo to be included in society. He’s a valuable member just like everyone else and the fact that he has a disability (or two or three) doesn’t change that. But sometimes it’s nice to be able to let your guard down. Sort of like coming home from work at the end of the day and kicking off your shoes. Relax. Ahhhhhhh…feels good. That’s the feeling I get when I’m with other special needs families, adults, parents and children. Like I’m home.
This year we didn’t think we were going to get our “Sleep and Eat Weekend” in because schedules just weren’t jiving and we couldn’t get our normal Friday to Monday thing arranged. But at the last minute we were able to sneak something in. Coincidentally, it was also my birthday. It was also also the same weekend that one of my favorite people in the world was going to be traveling to the US and would be in the DC area. Other favorite people in the world were going to converge on the city the same day. Lucky me, if I played my cards right I could meet them all! Ok I lied, we planned on going there SPECIFICALLY so we could meet them. WHAT. EVER.
The Guy I Live With and I set off from home Friday and headed to DC, checked into a cute little boutique hotel and had a lovely dinner. Eating and sleeping was accomplished, as were several baths (since I have no tub at home right, now all I wanted was a hot bath!) On Saturday (you say it’s my birthday, It’s my birthday, too, yeah) we headed towards the Mall, smack dab in front of the Smithsonians, and met up with some of the loveliest people in the world. Members of our tribe. We had a picnic lunch, played with their children, laughed, cried, hugged, ate, and talked. Later we headed back to the hotel and then some of us went out to dinner where we ate, drank, talked, laughed, hugged and cried some more. Then we headed back to the hotel where some of us still talked and laughed. Then we laughed more. It was truly an amazing day. It was like being with friends I haven’t seen in a long, long time. Except none of us had ever met. It didn’t seem possible, since it felt like we’ve known each other all along.
I can’t even begin to tell you how much this meant to me. None of us has the same exact experience (truly, we all have unique children) but we all get it. We all have different backgrounds. Different states. Different religions. Different cultures and beliefs. Different hardships. But it’s all ok. Because we are all the same, deep down inside. And we’re all there for one another.
So say what you want about Imaginary Internet Friends. But I’m keeping mine. And you can’t have them. SO THERE.
This is me, voguing in a chicken suit head. His chicken suit head. Don’t ask. But it looks like I’m a heavenly chicken in this picture, doesn’t it?