Wednesday, April 7, 2010

The sisterhood of the special needs child



We are headed home from Disney World. The line at airport security is impossibly long, and I know Max is going to wig out because crowds unnerve him. In situations like this, I have been able to explain to a staffer about Max's special needs, and they have let him go through the employee security entrance. I approach the woman stationed there, and explain that I have a child with special needs who gets upset by crowds.

"You can't go in here," she says. "Do you have any suggestions?" I ask. "You can walk over to Gate B, where they have a family entrance," she answers. "Wait—you want us to walk all the way over to another gate? I have a feeling that might be just as crowded." She stares at me. "Well, that's your choice," she says, matter-of-factly.

I walk away and spot a woman with a Transportation Authority badge headed toward us. I stop her and tell her about Max, not mentioning that we have just been turned away from the employee entrance. "Come with me," she says, and we head right back to the employee entrance. I am feeling a little giddy at the thought of seeing Ms. Stonyface again. "This family needs to go through here," the Transportation Authority woman says, adding something I can't hear, and then she waves us through. "I have a child with autism," she says to me, quietly. "I know how it goes."

This is the sisterhood of the special needs child, that instant connection with someone else who has a child with disabilities.

It is a look from the other mom at a birthday party where your two kids are clearly the only ones with challenges.

It is the conversation you so easily strike up with the other mom in the waiting room at the developmental pediatrician/neurologist/[fill in the blank] specialist.

It is finding out that another woman in your network of work friends also has a child with special needs, seeing her for the first time in years and hugging her tight.

It is going to an event for kids with special needs and getting excited for other moms when their kids do something awesome because you know that giddy feeling of "YES. HE. CAN!!!!"

It is finding out that someone else in your neighborhood has a child in Early Intervention and trading notes when you bump into each other in town.

It is being asked by a friend to call one of her friends who has a child recently born or diagnosed with special needs, calling, and talking like you've known each other for years.

It is being in a restaurant, mall or park, noticing another mom with a kid who is handicapped, and suddenly feeling less alone in a sea of typical parents with typical kids.

It is the bond I share with all of you.

This is the sisterhood of the special needs child.

Got a story to tell?

Photo by idg

40 comments:

  1. GREAT post, Ellen! Some days that sisterhood is all that keeps us upright!

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  2. Wonderful post, and yes I do have a story to share.

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  3. Amen, sister. And I do mean sister. We are all in this together. It's an exclusive club. I have 2 stories. 4 days ago I was at a pizza place ordering a gluten free, dairy free pie. The lady taking my order said to me, "I have a son with autism. I like you already." We are sisters. Today, while binging on a sundae at an ice cream parlor, a family next to me enjoyed their own sundaes. Within 7 minutes, the mother and I are trading notes. Her son is on the spectrum, too. We exchanged email addresses and promised to be in touch. She's my sister, too.
    Ellen, you just inspired me to write about this, too. Thank you. And thanks for being there for the rest of us sisters ;)

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  4. Well said! Yes, all you sisters are my sanity.

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  5. Yes. Completely. I've made some amazing new friends this way.

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  6. really great post. We had one of those moments just today. I had taken Junior to the Jelly Belly Factory and we were on the tour(he loves this place), we have to stay at the front so Junior isn't surrounded by people and so he can see while in his chair. All of a sudden a very rude group just pushes to the front and right in front of Junior so he can no longer see anything. without missing a beat an older lady behind me steps up and tells them they need to move out of the way. She then turned to me and said my grandson is disabled and people have no right to act like this.

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  7. Beautiful post, sister! Yes, I too feel the special bond that parents of children with special needs feel. As strange as it may sound to some, I feel very comforted and secure when I bring Monkey Boy for appointments at Children's Hospital. I'm surrounded by mothers who are going through experiences similar to mine; I am no longer the one walking alone among the "typical" parents. I am not the one to be stared at and/or pitied. Rather, we are all members of a very exclusive, challenging, beautiful club.

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  8. Got any pants we can mail around :-)~

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  9. Not a bad sisterhood to be part of....lots of acceptance all the way around.

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  10. Too many stories to share - but I'm so, so grateful every time I meet another member of the "sisterhood"!!

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  11. Its great when I have those moments of being reminded that I'm not alone. I've been blessed by the connections I've been able to make thru what could have been a challenging situation. God is good and He wants us to make those connections so we can inspire and encourage one another to move forward and be the best parents we can be for our special little ones.

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  12. You can always ask the airline to "flag" your tickets when you book your flight. I don't know exactly what it means but it does work. There's a longer story I can tell involved with this but I'll just tell you at one point I had a pilot walk me to my next gate when someone didn't show up for me. Yes, A PILOT. He was a really neat guy, although I have no idea if he has experience with special needs. It didn't come up in conversation.

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  13. It is an amazing sisterhood, for sure! It is one that I never dreamed I would join, and now wouldn't give up for the world. :)

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  14. So sweet, and so true.

    You can tell when someone really gets what you're talking about.

    That's why I come here.

    Beautiful post, Ellen.

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  15. Proud to be a member:) Jen.

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  16. Yes! Yes! I am amazed how many wonderful new friends are in my life now because of this!

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  17. So beautifully written. Brought tears to my eyes.

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  18. I wish I lived in a bigger town...my "sisterhood" is mostly through the internet! I am, however, the sister-waitress who "gets it" for families passing through, every so often!

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  19. I wish there was a way to have one big playdate with all the sisters in this blogging circle...can you work on that one??

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  20. I love when I meet a sister!! I met a woman in a waiting room and we were SURE we knew each other and couldn't figure out how. We talked for ever, well after the kids were done with their appointments. We came to the realization that there was no way we could possibly have met before, but that we most definitely knew each other.

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  21. It HAS happened to me as well, but only once or twice....I wish it happened a lot more. Could use some "sisterhood" after a visit with a brutal therapist with my little girl. I HATE it when a therapist takes it upon themselves to apply more labels to my daughter...especially when it undermines her strengths.

    Sorry...off topic!

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  22. Your post brought a tear to my eye - and made me want to leave a comment. We all have a story to tell - I found your blog when trawling the internet for information, when my 13 month old daughter was diagnosed with Congenital CMV last summer.
    I am lucky enough to have a good support network of moms who also have a child with special needs, and they truly are my sanity. Otherwise, our road can feel very lonely.
    Wonderful post!

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  23. Never actually met someone whose child has the same disability as mine, but I HAVE found several online and it is so nice to be able to say, "I get it. I understand." And to share stories.

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  24. I don't have a story to share ... yet, but I also belong to this sisterhood/sorority/momtourage (or in my case grandmatourage)! I have heard our "club" labeled many different ways. I too had tears in my eyes reading your post. I've "lost touch" with friends I had in my "former life". Friends prior to raising my grandson who still don't fully understand - not only what we go through, but why we "choose" to help with his care. So, I grasp for my moments with others from the "club". For us, since there is no "support group" or organization that encompasses all of our grandson's disabilities, we have clung to friends we've made through the internet, blogs, face book and yahoo groups and locally, FBC (The Foundation for Blind Children) where most of my "sisters" come from.
    Thank you my "sister" for sharing your life's experiences and for writing about us!

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  25. That is such a beautiful post and so true!

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  26. A wonderful post. Having a daughter with Rett Syndrome introduced me to people all over. Some became great friends. I miss my sisterhood so much. Xx

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  27. Love the term the Sisterhood of the special needs child!

    Our child has Rubenstein Taybi syndrome and the internet had relaly helped us develop a sisterhood with others who understand. I don't know what we would do without this important relationship!

    Kelly

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  28. I LOVE this post! It is so true! People who do not have children with disabilities have no idea the challenges we face every day! That was great at the airport. I have an autistic son and we once stupidly chose a night flight and had a 2 hour lay over somewhere in the US. He was wild wild wild. I found a room with a tv and a couch, and the guard said that room was only for children who were traveling unaccompanied. I told him if he did not let him sit in that room and watch tv, he WAS going to be unaccompanied because I was going to LEAVE him!!! He reluctantly complied.
    (I have another child with a psychiatric disability, and I asked for a wheelchair. He was sleeping as it was 3 am, so we wheeled him around asleep in the wheelchair. The things you have to do!!!!!!

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  29. heart this post!

    "We are all travelers in the wilderness of this world, and the best we can find in our travels is an honest friend." Robert Louis Stevenson

    GO PURPLE SUPERHERO Max + his SUPERHERO family GO!!!!

    Remember:
    "You're braver than you believe, and stronger than you seem, and smarter than you think." -Christopher Robin to Pooh + Superhero Max!

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  30. Very well said, Ellen. I met someone last year whose son has CP along with some other challenges. We hit it off immediately and I feel we are close. I can call/email/text her about anything going on and she gets "it" without a ton of explanation. I don't feel judged by her and she is a safe harbor. The connection you feel with other parents of special needs kiddos is priceless. We were in Disney last week with the kids and struck up a conversation with a family in line behind us. They have a 17 year old son with CP as well as legally blind. I could of hung out with them all day. So easy to talk to. I really enjoy your blog and read it daily. You have a great way of expressing yourself.

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  31. Yes! A mommy friend and I both found out later that our kids have autism - we don't love that we have to deal with it but it makes going through it a whole lot easier.

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  32. So nice to meet new sisters, as you call us. Great term. It is a huge thing to find moms who share your challenges and experience. I feel like I'm not pretending to have it all figured out when I am around other special needs moms. For some reason I feel I need to seem in control at all times around other regular folks. So not the case! I am struggling and learning as I go along. I know all parents do this to some extent, but special needs moms don't complain about the same things other moms do. And rarely want to hear those regular complaints while silently thinking "if only!"

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  33. Love being part of the sisterhood. I bring my daughter everywhere with me. She loves it and she's a great conversation starter - people always ask about her, or her equipment or where she goes to school, or what her difference is. My son has AS, so people are more likely to frown with disapproval at his behaviour, but here in Ireland you can now get a card to give to people to show that your child is on the spectrum. I still have to get one though:( Great post!

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  34. Thank you for this wonderful post. I have followed you on Twitter, too. My 3 year old son has apraxia and sensory issues. Many things are tough for us- dentist, haircuts, etc. People make cruel comments, roll their eyes, etc. When I meet another mom who "gets it"- whether in a therapist's waiting room or at the supermarket- it is a moment of relief and hope. We are a special group, just like our kids.

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  35. this was a great post, so true and so well said:) i'm glad i found your blog today.

    that is one of the first positive thing i noticed when i found out my son was born with Down syndrome, the love and support from complete strangers that now are just as close as family. i have found the world to be is so good/kind. it's to bad everyone can't live that way and have that outlook (example: the first perons you met at the airport). but i'm glad i can:)

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  36. I know this sisterhood well and have spent many an hour talking to people I don't even know. I have often marveled at my joy in having to go to my Max's doctor's appointments. I sit in the waiting room feeling comfortable and relaxed despite the reason. I feel like I belong.

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  37. You made me cry. And smile. I'm so thankful for all of you. Don't know how I'd do it otherwise.

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Thanks for sharing!



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