Fraternities have Hell Week. The Discovery Channel has Shark Week. Me? I have Spotlight on Siblings Week. Today’s post is the second in a series celebrating the incredible sibs who will (and are) changing the world for all of us.
It all started with an innocent e-mail.
I’d only known Ali for a couple of months, and we’d yet to meet in person, but she already had my heart.
When we were first introduced by her predecessor at Autism Speaks, I had no idea what Ali’s connection to autism might be. All I knew was that she was one of the rare angels in this world who have devoted themselves to making the world better for our kids. It is, quite literally, her full-time job.
She had just read my post about Katie trying to find her place in the world – struggling to eke out the attention that can sometimes be in short supply as the sibling of a child who needs more than the average bear. She’d felt compelled to respond. I’d soon find out why.
I loved your post today. I can relate to needing alone time with my parents. It can be overwhelming to say the least.
If Katie ever needs to chat with someone who just gets it, please put her in touch with me!
As it turned out, Ali grew up with a brother with autism. She could relate. And she was reaching out.
I immediately asked Katie if she might be interested in e-mailing with Ali. I suspected that she might like the idea, but I couldn’t have guessed that she’d nearly jump out of her skin at its first mention. Within minutes she was pounding away at the keyboard, typing furiously. In pink. ‘Cause she’s nine.
My name is [Katie]. I’m 9 years old. I live with my Dad, sister, and Mom (you know her). I have a dog named Winston. He is VERY fuzzy. How many siblings do you have? Do you have any pets? My mom said you grew up with a sibling with autism too, so maybe you can help me with questions. I have lots, so I’m only going to type one. What did you do when your sibling embarrassed you with very inappropriate words in public?
I’m very excited to hear from you.
Well, God bless her – Ali wrote back with no less enthusiasm than her nine year-old pen pal. I’ve pared a few of their deliciously long (and on one end prone to Proustian stream of consciousness rambling) recent e-mails down to short excerpts. I cut them down in part because if I didn’t, this would be one EPICALLY long post. But also because, well, it’s their conversation, not ours. But both parties have graciously agreed to let me share enough of their exchange to give you the idea. And I think it matters. So here goes.
… I hope I can help you along this shared journey we are on. Back when my brother was diagnosed (23 years ago), no one really knew what autism was. He would often have meltdowns in public, that would be SO embarrassing. We would try to explain, but people thought we were saying “artistic,” like he was good at art.
It was so hard. I used to get really upset, but my parents used to do everything in their power to stay strong so my other brother and I could try and stay mellow.
[Katie], I could tell you a million stories about [John]. Some good, some bad, as with all siblings …
… Some people mistake autistic for artistic for me too! It’s kind of annoying, isn’t it? Like meaning when somebody says, ‘Oh, so your little sister’s good at art! That’s great. But why is she acting like, you know .. kinda weird?’ It kinda hurts when people say stuff like that. Like that my sister’s weird. It just hurts.
Do you think you can tell another story about [John] sometime? So are you going to tell a good one about him, or a bad one? Cause with all siblings, including [Brooke], there’s the good side, and the not so good side. At my school, they call meltdowns a ‘bombaloo’. That’s in sib-shop, which is a little group that I go with a few of my friends who also have a sibling with a disability. It usually makes me feel better. Last time I missed it and that stunk cause we were having oatmeal raisin cookies that day! It stunk like P-U!
I really like how you put it when you said that we’re on some sort of journey. That was kind of cool how you said it. …
*… All I can say [Katie], is simple things like grabbing pizza can turn into an ordeal. As siblings I think it is natural to lose patience, and be embarrassed, and get angry. We are only human! But we are special and have more compassion than most. When [John] hurts, I hurt. When he is happy, so am I …*
Did you catch that line in Ali’s last e-mail? ‘But we are special and have more compassion than most.’ Yeah, I knew you would. Just checking.
I hope Ali’s parents know what an incredible kid they’ve got (even if their ‘kid’ is all grown up). I don’t doubt for a moment that they do. It would be impossible to miss.
There’s more. Much, much more. But for now, I leave you with this …
We can’t always give our ‘typical’ children what they need. Our lives are often fuller than most and the demands of each day can far exceed the capacity of its meager twenty-four hours. We find ourselves playing a constant game of triage – so if it’s not dying, it may just have to wait.
But just because we can’t always BE what our children need, that doesn’t mean we can’t help them find it.
Katie walks away from Ali’s e-mails beaming. Suddenly she’s not alone. Someone out there has lived this. Someone understands her. Someone shares her language.
And best of all, she gets to tell Ali how she’s already doing the same for someone else. But that’s tomorrow’s post.
Editor’s note: Some ideas for getting started ~
Contact your local autism resource center or ARC. If they don’t have a Sib Shop, ask them start one. If you don’t have a local autism center or ARC, try a YMCA or your local church or synagogue. Don’t be afraid to ask. Curriculum, training and just about everything else you need to start a Sib Shop is available HERE.
It doesn’t even have to be local. Thanks to Al Gore and his nifty Internet, it can be anywhere in the world. All it takes is one person. Just one connection. One Ali who can reach out through the ether and say to a fellow sibling, “I get it. I’ve been there. I know how it feels.”
If you have further ideas or suggestions for getting siblings the support they need, please leave them in the comments! I’d LOVE to hear from you!
Editor’s other note: I’d like to thank Ali’s parents. Somewhere along the line, despite some pretty challenging circumstances, they raised a beautiful young woman. A woman who is indeed incredibly special and has far more compassion than most. I am so grateful to have crossed her path, and count among my blessings her presence in my daughter’s life.