big sister as little sister

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.

Jess ~

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!

Ali

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.

HI ALI!

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.

From,

[Katie]

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.

Hi [Katie]!

… 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 …

*

HELLO, ALI!!

… 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.

33 thoughts on “big sister as little sister

  1. so I can see this is going to be “cry week” for me….great post and I am happy for Katie that she has someone to share her struggles with both in school and out. great job mom. just think someday someone will write, “I’d like to thank Katie’s mom for the great job she did raising a strong, articulate, comapssionite woman”, too. as always, xo.

  2. cry week for me too. it sounds like ali and katie were made for each other.
    I wish I could find someone like this for my son. In the past he’s refused to go to the sibshops (too shy maybe?) Maybe I’ll try again this fall.
    thank you for the reminder this week to focus on ALL my kids.

  3. “But just because we can’t always BE what our children need, that doesn’t mean we can’t help them find it.” – So important for all parents to remember! With so many families spread out all over the country these days, and the divorce rate what it is, so many parents are left trying to be all things to all their kids and it just can’t be done. Thanks for the reminder that we all need to look for ways to lighten the load, for ourselves and for each other.

  4. I grew up as an only child. Therefore, although neither of my children have the added spectre of autism, I am frequently bewildered by the brother/sister dynamic. My daughter is 14, and my son is 11. I see how mortified she is by his “typical boy” behavior and am always walking the line of how much of this is “just life,” building character and all that, and if I should take her “side” more often. A constant balancing act – I feel like the United Nations.

    Talking about what to do if you don’t have a Sib Shop in your community reminded me of the book “Still Alice.” Although it is fiction, it is scrupulously well researched. The main character has early onset Alzheimer’s. Although there are all kinds of medical and clinical resources, and she is being treated by the finest of fine medical institutions, when she asks about support groups, the answer is something like “oh, we don’t have the resources for that.” Fiction, but I can only imagine that exact scenario happens countless times a day for countless issues/conditions around the world. End of story: she sets up her own support group despite that incredible strain of her disease. Where there is a will there is a way. We all need to support each other.

  5. Swallowing the lump in my throat.. Thanks for allowing us to really feel their beautiful, unique perspectives. Sort of makes me realize we’re the lucky ones, aren’t we.

  6. You’ve inspired me again, Jess. These siblings are a rare breed. An autism diagnosis is for the family, not just the affected child. We all need to remember that.

  7. God, I wish I had an Ali.

    Sometimes, when I’m at my lowest, this stuff comes across my radar and I realize that we are the lucky ones indeed. Forever changed. For good.

    Bless those sibs and Alis in the world.

  8. This is awesome – I am full of smiles. (I promised you that you were getting the most awesome person on Earth in my absence, didn’t I?) 🙂

    Miss you!

    • jen,

      so i stamped my feet and refused to believe that anyone could ever replace you. i stand by that, but ali has brought her own spin and with it a whole new dimension to our lives, so fine – i’ll begrudgingly say you win.

      xoxo

  9. I am Ali’s Mom and we do know how blessed we were when she was born. A month after her birth , we started to realize things were not quite right with John. We started on the long path of diagnosis, treatments, programs etc. Many trials and tribulations along the way. John would not even look at Ali but she just kept “getting in his face” and making him notice her. His older brother has also been very connected to him. They have helped to make him who he is today.
    Through the years we were so “lucky” to have friends who were in the same boat as were with kids the same age…normal and not so normal!! This was helpful to all of us. We have always called ourselves “the lucky ones”. How true, how true.
    Even when Ali was in Kindergarten she was a “buddy” in John’s class. We had a truly wonderful teacher in his class who made it “cool” to help out.
    I am so glad that Ali can help Katie and so many others because she has the biggest heart and she remembers how “lucky” she was to have people along the way who helped to make it easer.
    Thanks for sharing our wonderful girls with the rest of the world!!

    • mrs dyer,

      my words can’t begin to tell you just how thrilled we are to have met ali. you have an incredible daughter.

      and thank you so much for paving the way for those of us who are now following down this path. you left a roadmap of dignity and strength for which we are truly grateful.

      if we ever meet in person, i warn you – i’m a hugger.

      warmly,

      jess

  10. Thanks for your kind words about Sibshops and thanks even more for your focus on brother and sisters. I direct the Sibling Support Project and we’ve help over 300 communities start Sibshops. If you want to start a Sibshop in your community, please let us know. We’d be happy to help in any way we can.

    We think sibs rock!

    Don Meyer
    donmeyer@siblingsupport.org
    206-297-6368

    • don,

      thank you so much for writing!! my older daughter has benefitted so much her sib shop. it has empowered her with language (the best of all remains ‘boombaloo’ :)) and above all has shown her that she is not alone on this path. thank you for all that you do on behalf of these wonderful kids!

      warmly,

      jess

  11. Oh I am so happy for Katie! She is one special child, and she will grow up to be someone very special too.. what a BIG heart! I can’t imagine the kind of empathy she has at only 9! You are doing a great job with BOTH of your children!

  12. I work with Ali and I just want everyone to know that she is such a kind, sweet, generous person – we instantly clicked, even though we are almost 20 years apart! She and I “relate” so well since I have a son with autism. When my days are horrible, I just know I can go over to her desk, mention my problem and she totally GETS IT! Once, she knew I had a bad weekend with my son, she deliverd flowers to my home to brighten my day. Ali helping Katie is for REAL…she has a friend forever! I hope she can have conversations with my daughter as well one day. Autism is so hard on siblings! Bless you Ali!

    • denise,

      thank you for taking the time to write! and thank YOU too for all that you do for ALL of our children! you are one special lot.

      xo

      jess

  13. I’m Ali’s uncle and i’m so very proud of her, her Mom (Carol), Dad (Bill), and brother (T). They are such a special family and [J] is so lucky to have them. I’m glad to hear about this blog, and happy that it enables people to share their thoughts and ideas with others.

    • robert,

      (can i call you uncle robert? ;)) thank you so much for sharing this. it’s obvious why she is who she is. it would appear that she grew up with some great role models. thanks for taking the time to write!!

  14. This is awesome!! I would love to be an “Ali.” I have both a brother and son with autism. Right now I feel blessed to be able to share with my daughter (who’s 6) about my own experiences so she knows she’s not alone. In addition to Sib Shop I wonder if there is anything formal out there online that could help team up adult siblings of a person w/ASD with younger people. I would LOVE to be a part of that!

    • you know, deb – i thought about setting up some kind of page where littler sibs could find bigger sibs, but unfortunately, i’m just not comfortable doing it. a bulletin board strikes me as the perfect invitation to internet predators. we’d have no way to know if people really are who they say they are and that can get really scary – especially for kids expressly seeking connection. for now, i think we need to keep it personal in order to keep it safe.

  15. Pingback: little sister becomes big sister « a diary of a mom

  16. When my kids were little, my daughter was so jealous of the therapists who came to the house. She thought they were there to play with her brother. So when she was in high school, and had to do community service, we arranged for her to be paired up with a little girl with two brothers with autism. My daughter went over to her house every Saturday for two years to be the person who was there just for her. It was a great experience for both of them.

  17. Hmmm I type my emails in pink :P) Hmmm ANyway, Love this! I have 4 kids and my oldest and my youngest are definitely my heros for all that they understand at such an early age!! ok well my oldest will be 18 next month yikes but he is a true great big brother two my younger boys. And my daughter, well, she is 7 going on 17 so she puts in the mix teaching the boys how to at least try and win an argument lol 🙂

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