thespecialparent.comSpecial People Parenting Special Kids

…that would be as wonderful as the article I have to share with you today. I feel honored to “know” the woman who expressed everything I thought when I heard about this gaffe that President Obama made. Honestly, right now I couldn’t have begun to do it the justice Johanna has. I feel blessed to count her among my “friends” – someone I’ve never met but know in a heartbeat I could reach out to. It’s what makes us special parents even more special. An extended family as it were. I’d like to share this small piece by one of our own, our extended family. Johanna Mattern Allen.

Rethink your outlook on the disabled

By Johanna Mattern Allen

Posted: Mar. 23, 2009

Words cannot begin to express how disappointing it was to hear President Barack Obama’s Special Olympics gaffe on “The Tonight Show with Jay Leno” on Thursday.

But it’s not just Obama who needs to take a hard look at this. His remark on one of the most popular television shows in America is indicative of a culture that is all too comfortable disparaging individuals with a disability – I might add, individuals who never would disparage him or anyone.

Since he so decidedly put his foot in his mouth, here’s my four-point plan for the president to make reparations for the cultural damage he caused last week:
* Pony up beaucoup bucks for the Special Olympics cause.

* Create a cabinet position for disability now. There currently isn’t even a policy adviser for disability since Kareem Dale moved to an arts leadership position. With a disability population in the United States of 50 million-plus, and growing especially as our population ages, we need disability experts to work alongside our president.

* Create positions for self-advocates in the White House so the president and the world never forget about people who have to work harder than he ever can dream of working to achieve what they do.

* Urge every college, university and high school in America to teach disability history/cultural competency.

Obama isn’t the only smart (read: well-rounded intellectual) person I know who knows jack about disability. And not all of us are as lucky as me to have my son, Jack (who has Down syndrome), for a teacher.

It’s totally cool to not know, but do something about it instead of getting defensive, making excuses or ignoring it. Here’s my simple, pain-free, four-point plan for the rest of us:

* Read some disability history. Read Paul K. Longmore.

* When interacting with an individual with a disability, presume competence. Always. Just because someone moves, communicates, sits, eats, breathes, walks, hears, sees, thinks or problem-solves differently, or doesn’t do any of these things, he or she still experiences life, contributes to the world, has feelings and thrives and depends on relationships with others.

* Don’t defend offensive language. Just because it comfortably rolls off one’s tongue in mixed company or it’s self-deprecating or we’ve always said it, that doesn’t mean it’s right. The next time you think “we’re being too sensitive,” think about how you sound clinging to an outdated term and defending it after the minority group being maligned has asked you to stop. If you need to be self-deprecating, use a thesaurus. Find the word or phrase you like and practice it before you need it – that’s how habits get broken. Language influences culture, culture influences policy and, in my son’s case, he can hear you (and so can I).

* Give us a break. No really. Take the time to be with a parent of a child with a disability or an individual with a disability. Encourage your children to have a play date with a child with a disability. Challenge the idea of why you might not have a friend with a disability. Reach out in friendship to those of us who are most marginalized. The great secret about disability is that each one of us is only a heartbeat away from it at all times.

The great tragedy of past generations is that there have been unspoken divides between the cultures of the disabled and those who are not. In the culture of disability, we’re accustomed to cheering on individuals with great challenges to help them overcome great obstacles and odds.

We in the disability community know those of you who aren’t disabled are able to learn more and know you are capable of using inclusive language and joining us in a 21st-century way of thinking.

Johanna Mattern Allen lives in Milwaukee. March 31 is the Special Olympics’ “Spread the Word to End the Word Day,” a national day of awareness calling for America to stop and reconsider the use of the “r” word: retard/ed. Go to www.r-word.org

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I was sent this by a dear friend of this blog and just HAD to share – because I’ve been on BOTH sides of this and hope that it makes all of us take a second before we too are the pointers…..

Why Doesn’t She Just…?

Written by Michelle

See her?

That mom over there?

Why doesn’t she just…

…Leave her baby in the nursery at church?
…Give it a rest with the hand sanitizer?
…Breastfeed?

Or that one — right over there — why doesn’t she just…

…Make her child behave?
…Stay home?
…Get a sitter?

What about that one — why doesn’t she just…

…Stop trying to put her child in with the “normal” kids?

Because she cannot — because she knows the nursery won’t pay close enough attention to her baby’s allergies, because her baby has reflux so severe it would break your heart if you really knew, because her baby has a skin condition and people say and think the cruelest things when they get a close look, because she’s the only one that knows how to care for her baby’s trach, g-tube, medical condition — she and her family are the only ones who are able.

Because she knows it’s worth the risk of offending someone by offering a bottle of hand sanitizer. Because she knows that her baby is only one well-meant cuddle away from another three-month stay in the NICU.

Because breastfeeding isn’t always as simple as it sounds. Because hours and hours of sleepless nights and stressful tears while her child’s life hung in the balance have ravaged her body to the point that it has nothing more it can give — no matter how much she wishes it were otherwise. Because the dream of nursing her own child died while her baby struggled to survive with the help of ventilators, trachs, feeding tubes. Because she won a hard fight against breast cancer. Because her child cannot or will not eat, leaving her to plan for future therapy, the next surgery, the next specialist appointment — while she searches for answers, diagnoses, treatments.

Because bad behavior isn’t always synonymous with bad parenting or spoiled children. Because she’s doing the best job possible in a challenging set of circumstances. Because her child has autism, asperger’s, touertte’s, down syndrome, schizophrenia, fetal alcohol syndrome — and after a full day of doctor and therapy appointments the stop at the grocery store just wasn’t optional — much as she wishes that it was. Because you just happen to be seeing her on one of the very worst days of her life.

Because she’s already stayed home for months. Because she deserves fresh air as much as the next person. Because her child does too. Because she’s working hard to give her child as many normal experiences as possible. Because others need to learn to be compassionate.

Because the possibility of a sitter isn’t a reality for everyone. Because she and her family are the only ones who know — the only ones who know how to calm her child down, how to give the injections, how to get her child to eat, what to do if her child seizes, how to vent her child’s G-tube, how to run her child’s feeding pump, how to flush her child’s port, how to change her child’s trach, how to assist her child to the bathroom, how to tell when it’s time to take her child to the ER or just time for a nap, she and her family are the only ones who know how to keep her child safe.

Because her child deserves a little bit of “normal” in this life too. Because her child, like every child deserves the best that can be given them. Because she sees the child when others see a disability. Because her child matters.

Because she’s right to teach her child to try, to aspire, to dream.

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Oh you know it – I’m in heaven – It’s American Idol time again and I too can revel in the sublime to the ridiculous that they have in contestants. It’s a new season and they are starting in Phoenix. I haven’t decided on this new judge, Kara. Right now she seems like the “sane” Paula. As for contestants fairly unimpressive group and then you know it’s coming -  the “story” of the night. His name is Scott McIntyre and he’s a piano player and a singer with a real Coldplay sound who GRADUATED college at age 19 – oh did we mention he’s visually impaired??  He sang one of my favorite Billy Joel songs and I thought really brought his own sound to it.

Sometimes I worry about this however – did they pick Scott because he’s token disability boy or is he going to be given a fair shot? Only time will tell but he was truly talented. They said they gave out over 20 yellow tickets – if what they showed so far was any indicator of the talent pool this season Scott’s a top 10 entrant…..Obviously it’s early – but I’d love someone with a disability who has TRUE talent – which Scott clearly does – be able to go through and show to everyone how people can and should be judged on their merits not their challenges.  I look forward to seeing how this goes once we get to Hollywood! Go Scott!

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I don’t know about you but this year has left me with less sense of humor than I typically possess which according to my husband was close to nil to begin with. I did however get a giggle out of Terri Mauro’s take on holiday carols  – Special Needs Christmas Carols! Couldn’t resist the opportunity to give you all a moment to take a break and have a good laugh! Now that we seem to have Katherine back home instead of the revolving door plan at CHOA Egleston I hope to start posting more regularly again!

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Obviously the whole Tropic Thunder thing has touched me. I’ve seen those looks. I’ve seen them used at my cousin Edith. I’ve seen them used at my daughter Katherine. I’ve seen them used at my friend Joey at the local Publix. I’ve heard the casual use of the word retard. I have to tell you I don’t consider myself the most PC individual in the world. I guarantee you however I wouldn’t walk up to my friend Debra and use the “N” word. I wouldn’t walk up to my father-in-law and call him a “S”. I can tell you for certain however that if I did I feel confident that both these individuals would feel well within their rights to defend themselves and WOULD defend themselves – whether verbally or physically.

I think generally speaking, people at least think twice before they use racial or gender biased terms. I am pretty certain (my personal observation) however that people don’t think twice about degrading the people in our society who cannot defend themselves. What is it?? Is it the easy shot? How can it be so un-PC to speak about gender, race, orientation but its devastatingly obvious to me that the issue of bias against intellectual disabilities is viewed as almost a joke. A fairly prevalent note I have seen is that it’s PC gone “too far”. UH HELLO?? Its gone too far?? HOW SO??? Seems to me that for all the “equality” speeches that you’ll ever hear no one seems to think it means for people who are intellectually disabled – THAT’S DIFFERENT. Please don’t ask me HOW it’s different. I sure as hell don’t get it.

That’s why I was so happy when I was looking at my facebook account to promote the R-Word site I found the R-word cause started from what I can tell by a young man Soeren Palumbo. I’ve added it as my featured cause on my facebook account. But then I found a real gem I wanted to share with all of you. It’s just shy of 10 minutes but it’s worth it!! IF this works I’ve embedded the video here. If not you can see it by clicking here.

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Oh no, not a bad joke just look at those kids!! They sure do look like they are having fun!! Your kids can have fun too and for a good cause!

Citrus lovers from around the world including the United States, Canada, China, Korea, Hong Kong, Japan, Singapore, Malaysia and Taiwan are invited to submit original photos of themselves with a creative “Sunkist Smile” (orange wedge in the mouth) to celebrate Sunkist’s 100th Anniversary. Now through May 15, 2008, consumers are encouraged to submit a photograph of their best Sunkist Smile and brief caption to www.sunkist.com/smiles.

Judging criteria are based on Creativity (40%), Fun Factor (30%) and Quality of Image (30%). One grand prize winner from each country will win a trip to any country in Asia and have his or her photo prominently shown on the world-famous Reuters Sign in Times Square in the heart of New York City! Five runners up will each receive a digital camera and one month’s supply of Sunkist citrus!

Adding to the excitement of commemorating the 100th anniversary of the Sunkist brand, Sunkist will celebrate and honor consumer participation by making a donation of $50,000 to Special Olympics, another brand known for creating joy and helping families stay active and healthy. See www.sunkist.com/smiles for official contest rules.

Terri Mauro of Special Children at about.com summed it up best in her post about this contest when she said the contest:

sounds like a good opportunity to get silly with your kids and upload a photo for a good cause. Since children with special needs stand to benefit from the Special Olympics donation, it would be cool if they were well-represented in the photo gallery, too.

Why not take a bit of time this weekend and have some fun with the kids and maybe you could be the lucky winner!! Certainly all our children who compete in Special Olympics will be winners by building up that donation!

I’m new at this but I’ve set up a Flickr Group ‘The Special Kids’ so we can share pics of our beautiful kids. This way we can see all our kids who we submitted to the Sunkist contest!!

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…and a cup of coffee

Every Sunday I hope to offer you my version of the Sunday paper with articles from the past week or two, relevant or uplifitng (or both), on various issues within the special needs community.

‘High School Musical’ production takes social inclusion to new level

One of the most successful Disney movies ever has been adapted to stage and performed by thousands of high schoolers across the nation but none possibly as inclusively as this one.

Stars shine at special needs talent show

Children at a local Ohio high school put together an amazing talent show ‘featuring’ Trace Adkins, Jerry Lee Lewis, Avril Lavigne and Soulja Boy.

Zambians pledge stronger voice in disability advocacy

A learning exchange between officials in Zambia and The ARC of the Twin Cities of St. Paul will increase advocacy for the disabled in Zambia.

Yoga’s appeal broadening to disability community

The ability to adapt this form of exercise to a multitude of disabilities makes its application almost universally beneficial.

Labour leader Gary Parent wins United Way Award

Gary Parent says he is humbled to receive this national award for doing “the right thing”

This prom is an enchanted evening

Everyone from parents to teachers to janitors kick in to make an ‘Enchanted’ evening for these special kids

U-46 holds first prom for special needs kids

Tuxedo rental: $150. Boutonierre: $10 Tickets for two: $50. The chance to attend a very special prom? Priceless.

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I found this blog because the mom, Nancy found me. What a blessing that was!! Nancy is mom to Jack. Jack is a child who has a visual impairment which leaves him legally blind. I’m sharing with you an comment I left on one of her blog posts because I felt the post was that powerful!

Wow! Thank you so much for this honest accounting of what’s truly a very real part of being a parent to our special kids! The reality is we all want to minimize the stigma any of our kids get subjected to whatever their disability. Not wanting your son to use a cane is just a tangible symbol to what we all are worried about – our kids being treated the way everyone else is.

I’ve added you to my blog because I think parents will do well to read another parents’ very honest perspective on parenting a child with special needs. Thanks for being so willing to share with such candor and honesty what so many of us go through but might otherwise be afraid to say.

Please do us all a favor and go visit Nancy’s website and this particularly great post by clicking here.

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This is an email I recently sent to Ms. Curran. If you are interested in contacting her yourself (as some of you who contacted me were) you can click here to send her a message. I am sure that she’ll be happy for any messages of support and thanks we send!

Dear Ms. Curran,

I wanted to contact you personally. I wrote about you briefly on my blog – The Special Parent where I talk about being a parent of a special needs child. My daughter is 16 and has multiple disabilities. She recently wanted to understand a bit about pageants because she had been offered an opportunity to participate in Miss Special Teen for our county here in Georgia. Imagine my delight to run into articles about your participation in the Miss USA program. I put it out there on the blog because I was certain other parents of special needs girls (in particular) might be interested in knowing about your inspirational story.

Thank you for representing yourself, your state, and my daughter and thousands of other girls around the country with such beauty, grace and dignity. Thank you also for giving my daughter a wonderful role model for her to emulate. You are someone she can relate to and aspire to be like. I hope you know what a wonderful, powerful and positive impact you are having for so many young woman.

Very Truly Yours,
Kyron Arambula
mother of Katherine McCoy

If you want to see other great pieces on Abbey Curran check out the 2 page spread in People Magazine by clicking here.

You can also view video of Abbey Nicole Curran on the Ellen deGeneres show by clicking here. 

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I am SURE you are saying are you kidding me with the Miss USA Pageant as a TiVo alert! I however think all of you with little girls may be very happy to have your daughter see Miss Iowa – Abbey Nicole Curran.  She’s a beautiful, talented, intelligent, self-possessed, young lady who is competing for the Miss USA title tonight. Why am I so interested in Miss Iowa when I am a Georgia resident and  Jersey born well because Miss Iowa has cerebral palsy.Ms. Curran says she wants the judges to know that she is living her dream competing in the Miss USA pageant. She says she also feels she’s not doing it just for herself however but for all people with disabilities hopefully teaching others it’s ok to take risks and that you never know until you try.It’s being carried on NBC tonight so check your local listings. GO ABBEY! 

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