Friday, September 17, 2010

A special sibling connection...and a chance to win My Baby Rides The Short Bus

This is a guest post by Yantra Bertelli, co-editor of My Baby Rides the Short Bus, a quirky anthology of essays by parents of children with disabilities. I don't know about you guys, but until I had Max, I'd never even realized that kids with special needs ride a different bus than other kids. Then, when Max was three and headed off to school for the first time, the short bus showed up at our home. Now we're card-carrying members of the Short Bus Club—and I related to so much in this book. Read Yantra's moving post, then find out how you can win a copy of it.

My fourteen-year-old daughter pushes on her brother’s cheeks. He is taking big gulps of air, pursing his lips together and anxiously waiting for her to apply pressure on both sides at the same time. She pushes, air rushes past his lips and he smiles a wide do-it-again grin. They play their game again and again till one of them moves away in silence, maybe throwing in one of their two-step handshakes she taught him over the last year. Momentarily, two of my four kids actually seem to “get” each other. Sure, there are complaints and power struggles, but those moments are particularly one-sided, and this interaction staves off the broader picture for a few seconds. I decide to enjoy it.

What is less obvious about this moment is that my son is fifteen months older than my daughter, and the handshakes and cheek popping are his and his sister’s ways of communicating with one another. He is deaf, has autism, and a few other problematic neurological issues that would take me a while to list and explain. Though we usually sign lines of complete thought with him, he uses less than ten signs in a given day to make requests concerning his basic needs.

He appreciates following his own schedule. He will lash out at times when the individuals around him cannot help him cope with his feelings or are unable to comprehend a question or problem he is having. He has never told us that he was happy, sad, or angry without being prompted to do so. Additionally, the kids are stepsiblings, he did not share the first six years of his life with her and she did not share her first five with him. I know she can remember the early years when she was the big sister and not stuck in the middle. I do not know what he remembers.

The kids arrived at their exchanges on their own. I did not model the interaction for them or prod one or both of the kids to look into each other’s eyes and hold still. They figured it out, both kids had the desire and patience required to follow through in a multiple step interaction. It is true that my daughter often initiates their interactions, unless he wants water or food. She is in his face and almost too overwhelming at times for my tastes. She does not let him off the hook easily, though will back away if he starts getting agitated. She pushes him to give her something—some strand of interaction that she can work into play. Yet, I have also witnessed him puffing up his cheeks as a response to seeing her. Play brings her brother out of his in-the-moment need enough to long for interaction.

As they grow into adulthood, my typically developing children will ultimately initiate whatever relationship any of them have with my son. I have considered attempting to instill a sense of obligation in them so they will help him out if my partner and I cannot. I have often believed obligation could be an opportunity, a building block they could construct a relationship on. I want to trust in their desire to care for their brother out of love and in this line of thinking obligation would be the roots of this love. Unfortunately obligation can lead to resentment. Obligation is one-sided. Obligation can interrupt the delicate back-and-forth of relationships. In truth he is part of our family and in many ways obligation is appropriate, but I worry over the back-and-forth. In typical sibling relationships the expectation that you will fill your parents shoes one day with your brother or sister doesn’t enter your consciousness when you’re a kid. When your fifteen-year-old brother needs to hold your mother’s hand when he crosses a street, believe me, the future possibilities churn in the back of your mind.

One of my daughter and son’s handshakes starts high above his head. He reaches up, left arm angled, slaps her hand above his head, after making the half circle in the air he catches her hand at his lowest point for another slap, then he lets his hand fall to his thigh. Then they share a single knuckle tap, fists closed, a part that he often tries to lead with. Each time their hands connect, his eyes briefly find hers and they smile, together, connected.

I do not know if these moments will become memories for both or if they will find other ways to show a glimmer of themselves to one another. If play is their communication, I wonder if it will be enough to build a relationship on over time. When I am lucky to catch their exchanges, it is obvious they see and understand one another.

To enter to win one of two copies of My Baby Rides The Short Bus, leave a comment below about something you never realized until you had a child with special needs. I'll randomly choose two winners by September 23, announce them here and sent out e-mails. Please make sure you leave your e-mail if it is not visible on your blog.

Update: The book winners are Lynn and Mo. Thanks again to Yantra for this lovely post—and to all of you for leaving such moving responses.


  1. "A woman is like a tea bag. You never know how strong she is until she gets in hot water." -Eleanor Roosevelt.

    I never had any idea how strong I really was until God gave me my second daughter, born with a complete cleft of her soft & hard palate.

    Prior to becoming a NICU mom and a special needs parent, I had only seen these moms on TV. They made it look so effortless. Yet suddenly, here I was, sitting in the waiting room with them, in the NICU with them, all the time wondering if I had what it took to be a parent of a special needs child. Can I do this? Do I WANT to do this? (And yes, I asked myself that question in my darkest hour)

    It rocked my entire world. But it molded it too - it helped me realize things aren't always predictable and sometimes? Sometimes we just have to go with the flow and move forward regardless of whether or not that flow fits that of society's standards. Because you know what? Society doesn't matter. All that really matters is me, my daughter, and a fiendish daily tickle fest. I'll take her sparkly laughter over anything on any day. And THAT is what truly fuels me through my days.

    I am strong. She is strong. We? Are doing this. Together.

    (email: ppdacceptance (@) gmail dot com)

  2. There are so many things I never knew I'd learn (hence the name of my blog; Unexpected Lessons) but one of the very many is just how protective I have become for my child in addition to how differently I have grown to view the world. It's amazing, really, the power a SN kid has...

  3. He's my brother, not my son, but give me about fifteen more years to get back to you on that one. :P

    I never realized how proud I'd be of my brother and how much I'd fight for him to get understanding.

    I also never realized how LOUD and STRONG his is when he's having a meltdown... prior to him my family only hugged, never hit or bit or kicked. That's why the hugs are so much better now--we've earned them!

    Awesome post--I'm totally going to read that book, one way or another! :D

    (email: thetheaterrat (at)

  4. Now when I see a teenager or adult with special needs, I see the determined, hurting parent behind that person. Society seems to blame and look down on these people, but they have no fault in their outcomes. I never realized how large the community is of special needs families. But, in the last 11 months, many people I have known in my past have come out of the woodwork to share their stories of survival and determination. There is a hurting world I never knew about. But, a world with way more hope than the average family, way more appreciation than the average family and way more strength.

  5. Maybe this is something ALL parents of two children know...but I never realized my heart could expand infinitely. I always thought secretly parents loved one child more. (I KNOW I was the more loved child. Until I talked to my brother and found out he thought HE was the more loved child!) Now that I have two children, the younger one with special needs, I see how stupid that formulation is. It's like asking "Which do you love more, your right ventricle or your left ventricle?" But it's interesting seeing how proud I am of my kids in such different ways -- I am as proud of Maxie for persevering (and with such good cheer) as I am of Josie for her traditionally applauded accomplishments. JUST as proud. Probably prouder. (Really, Josie has special needs in her own way -- we all do -- in that she needs to work on patience and kindness...and I'm MUCH prouder of her when I see her working THOSE muscles than I am when she aces some standard measure of brainiac achievement. Because I know they take more concentration and effort for her.) I guess what I've learned, with both kids, is that I'm prouder of sustained EFFORT than of accomplishment. Who woulda thunk?

  6. I didn't realize how strong I am and that I can handle anything. I never thought I was like that until T-man came along. He has made my life better - both of my boys have. I never thought I'd get to this good place either. and T-man is only 5! Just think where I'll be when he's older!
    great post! rings true for me in so many ways - thanks!

  7. I not only grew up with a sibling who has cerebral palsy but find myself raising my own child with cerebral palsy. The world is not always hospitable nor accessible and this has created an atmosphere that causes us to always think and plan ahead. I think I can blame my over-compulsive planning problem on this one, single aspect. I had a daytimer when I was like 5 !?# But now I am surprised to learn that we need to slow down, relax sometimes, be present in the moment and let our kiddos show us the way without any pressure or expectation.

  8. I have learned empathy and am still learning not to judge - until you've been in someone else's shoes, you really don't know what it was like, or how you would react.

    I'm also learning that we are all human and all want the same thing - to be loved and praised and appreciated for everything we are!

  9. I never realised that so many countries do not give disabled children the right to education or even respect them as human beings.

    A little boy I know lived in Europe for most of his life and was left to rot in the kindergarten class until he was 11 because he has down syndrome When he came to the UK he did not know how to socialise with kids his own age, even those with similar disabilities. He was scared to communicate in class, because he'd always been told to be silent in school.

    One day we were outside, he looked at the sky and sighed "air plane" to me. It was magic! His first word in school.

    All children, no all people deserve the chance to learn and feel proud of their achievements.

  10. I never realized how happy "differently abled" kids were! Now that I have one of my own, I'm living it up. We're laughing & smiling pretty much all day everyday. I'm so lucky & thankful to be a part of the Short Bus Club! :)


  11. I never realized that the "milestones" other parents take for granted, talking, walking, etc., I would seek and applaud louder than if I won the lottery.

    tesnjen at aol . com

  12. What an amazing book-I was so honored to be part of it :)Whomever wins it will love it, I'm sure!

  13. I've learned a lot these last 19 months, mothering Henry. He's the 3rd of my four children. I knew how to parent normally-abled children, and engaged in self righteous judgement when I saw other parents 'doing it wrong'... Now, that I've been thrust into the world of special needs, I recognize my folly.
    I have learned that humility keeps me honest. Joy is found in the moments. I've become a better mother, to all of my children and I have eliminated all of the things from my life, that don't add to it.
    I have become a sword swinging warrior - in the fight to get what my son needs.
    I have found kindness and goodness in people that had no cause to reach out.
    I have found pride - real honest pride. I am proud of my thirteen year old for educating herself about Cerebral Palsy, for starting a foundation to educate the world, and for learning how to be a normal teenager while being an extraordinary sister.
    I have learned to let my children decide how they will relate to each other. I have learned how to give each of my children special time. I have learned to put all of my wants aside, in order to facilitate an afternoon trip to the library.
    But, if I had to narrow down the list, to the most important thing...
    I have learned that gratitude keeps me centered.

    Thanks to everyone for sharing their experience strength and hope...


  14. I never realized how cruel some people can be, and at the same time, I also never realized how absolutely nice others can be. :)

  15. Yeah. I do a little happy dance every morning when the short bus pulls into our driveway.

    Oh gawd... what I've learned?

    Deaf Kids kick ass.

    yeah, that's as deep as I get after a bottle of wine.

  16. After a mere 5 months of being in 'the club', I have to say I have much more compassion for everyone, and much less patience for those who create barriers for the disabled.

    nerdchik at mac dot com

  17. I've learned to have a little grace in the most graceless situations.

    Though I do not need a copy of the book as I have it. :)

  18. I have learned to appreciate the "little little" things! All of the ones I took for granted with my other children such as eating by mouth, expressing wants and needs, just to name a few!

  19. My Derek (who has CP) is nearly 6 years old. I love him to my very core. Was it what I signed up for? Not even close! However now I can't even imagine hime any other way. I spent the first few years asking God to heal my handicapped child. I have learned His answer to me is NO! his spirit is whole his body only temporary.

  20. I've learned quite a few things, but here are the highlights:

    - I've learned that this is a club I never wanted a membership to, but couldn't imagine being a parent without the membership.

    - I've learned that everyone has something going on in their life, whether it's visible or not. Cut everyone some slack because you haven't walked in their shoes.

    - I've learned that I really was given my specific child because her dad and I are meant to be her parents... and more importantly, there are other people in the world who could NEVER be her parents.

    - I've learned that love truly does multiply when it's given away and we never know how strong we are until we need to know.

  21. I never knew about the alternate universe that is special education. I never knew about early intervention, and that it took you til age 3 and then the school district took over. Who knew that school districts were aware of kids in their district as young as 3? I never knew about IFSP's and IEP's. I never knew that we could fight for and get placement at a private school on our district's dime. And I never knew that perseveration was a word, and that conversant could mean "able to have a conversation"...still not convinced of that last one.

  22. Wow... I have learned soooo much!

    How hard it is to get a decent education for a SNK

    That I can write out my feelings to get through it

    That depression isn't weakness, it's a sign I tried to be strong for too long.

  23. I never realized how consuming it can be to have a special needs child. I am always reading, researching, asking people questions, etc. It can be exhausting but I also find it empowering. When I find an answer to one of our challenges, it gives me confidence that I can handle the next challenge too.

  24. I never realized until I had Owen, just how many times (and with such ease and carelessness) people throw around the word "stroke" (as in, "don't have a stroke", or "he almost had a stroke when...") each and every day.

    It also made me think about how many times I had likely used similar idioms without the consideration of who might be hearing me or affected by what I've said...

    Rather than regretting my past transgressions or resenting what I hear from others, I look at this as another way that I can be grateful to Owen for teaching me and allowing me to grow as a person.

  25. Once my son arrived I learned very quickly to be his advocate no matter what the situation. I've had the pleasure of dealing with a lot of wonderful, caring, dedicated teachers, therapists, doctors, etc who have helped my son. I've made it a point to thank them all. I have also told several "experts" they should seriously consider a different line of work given their lack of people skills and ability to relate to my son and our family. I no longer worry what others think of me or my family. We are doing the very best we can and we live each day to the fullest!



Thanks for sharing!

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