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Chris Burke (also known as Corky from the TV Series, “Life Goes On”) helps the National Down Syndrome Society (NDSS) kicks off the celebration of World Down Syndrome Day on March 21st by presiding over the closing bell.

The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to realize their life aspirations. NDSS is committed to being the national leader in enhancing the quality of life, and realizing the potential of all people with Down syndrome.

The mission of the National Down Syndrome Society is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy. For more information please visit http://www.ndss.org.

Ok I loved Chris Burke years ago in Life Goes On. I loved the fact that this family seemed pretty real – far more real than the Huxtables seemed to me. Real and I think what I really loved about it was that in some small way it tried to give America a look at poeple who mainstream television don’t “show” – the disabled. This show showed Corky (Chris Burke’s character) as a kid who was a part of a family who had problems – his problems were not that much different than any other teen entering high school. Fitting in, finding himself, dealing with siblings and the like.

Really our kids all face those issues, just happens that they do it at the same time as dealing with some other issues that “mainstreamers” wouldn’t have to face – seizures, learning disabilities, heart conditions – whatever issues your special child faces. Too bad there aren’t more shows being developed willing to show that type of vision. Too bad there aren’t more major stations willing to take a chance on something like that – THAT’s what “reality TV” should be – something that mirrors reality. Chris Burke and Life Goes On actually got reality tv right. It was great to see him out there yesterday. He reminded me what I missed on network tv these days.

It’s amazing what can be put through on a “reality show”. On the one hand, you have Angela Martin, American Idol contestant whose short stint on that show gave the opportunity to highlight Rett’s Syndrome and get this little known disability some well deserved face time. What’s that expression about no good deed goes unpunished?

So yesterday I run across the story of Big Brother on MSNBC. Big Brother is a “reality show” in which a dozen or so individuals are picked to live in isolation at a house under the constant glare of cameras filming their every move and interaction. These roommates win prizes by avoiding being voted out of the house.

Apparently someone felt that it makes good television to allow someone who supposedly does volunteer work with special needs individuals at an autism foundation to refer to them as “retards”. Well leaving the decision as to what is “good” TV for a minute, we know it got people talking. I’m writing about it, MSNBC is covering it, pretty much everyone seems to be covering it according to a simple google search.

And why not? Autism groups are rightly calling for apologies from CBS whose contention it is that the fact that they showed the outrage of other housemates somehow makes it ok. More interesting to me is that CBS goes so far as to say that while they find the statements to be offensive, they also in the same statement say they are not responsible for views aired on the program.

I’m writing this in the middle of the night and so maybe my brain is a tad bit addled but please explain this to me like I’m no smarter than a 5th grader (who by the way I believe already know the answer to this rhetorical question). How is it that CBS broadcasts this over their airwaves, can make all kinds of bleeps and bloops to cover any number of other offensive words but have no control over the views aired on the program?

I’ll be the first to admit, as the mother of a special needs child with a diagnosis of mental retardation – the whole retard thing just makes my stomach heave. The fact that this individual claims to work with individuals who may have a similar co-existing diagnosis makes it just that much worse. The fact that CBS seems to think that airing one person saying don’t say that makes airing the view somehow balanced and therefore more acceptable says to me that the whole lot of them over there need some people first language lessons.

Disability is Natural is one of my favorite sites for this information. They have a great printout located here. It seems to me the powers that be just aren’t getting it. I’d like us to all help them “get it” just a little bit better. I hope that maybe you’d be willing to help me in this effort. I’d like you to print a copy of the Disability is Natural People First Language Chart and mail it off to Mr. Leslie Moonves President and CEO at CBS Corporation. I’ll be adding a copy of this blog entry to Mr. Moonves for good measure. I don’t claim to have millions of visitors here to my blog. What I’m hoping for is a more viral effect….you know that you tell two friends and they tell two friends kind of effect and maybe CBS under the guidance of Mr. Moonves will be able to be more responsible for what airs as “entertainment” on his network.

If you are willing to do this Mr. Moonves can be reached at:

Leslie Moonves
President and Chief Executive Officer, CBS Corporation
51 West 52nd Street
New York, NY 10019

Let’s make sure that Mr. Moonves can educate a whole bunch of people on people first language by the time he gets done getting these letters.

Well last night’s story on Extreme Makeover Home Edition was out of Louisville, Kentucky. It featured the Hughes Family. The eldest child in the Hughes family is an amazing young man named Patrick Henry Hughes. Patrick Henry was born with what the doctor labeled as multiple anomalies – he was born without eyes and his limbs (arms and legs) do not extend the way they should. Because of this Patrick Henry uses a wheelchair to get around.

Patrick Henry’s father Patrick John chose to take a night shift job in order to be able to stay at home during the day to care for him. Patrick John knew that they would not do the “typical” father/son things like sports and wanted to make sure that they had a special way of bonding together and introduced Patrick Henry to the piano. He showed a real affinity for music.

As he has grown he has excelled at the piano and has also added playing the trumpet and plays with the University’s Marching Band. Patrick Henry plays the trumpet while his father, Patrick John moves him around in his chair learning all the steps to the routines the marching band does. As a veteran marching band member, knowing the time and energy that activity takes, I marveled at the devotion of this father to his son.

Although Patrick John seems to worry that because he’s had a problem providing a better physical location for his son to live that he’s somehow fallen short as a father I can assure him he’s a hero in my eyes. The commitment that Patrick John has to his son and providing him the most normal existence possible is incredibly inspiring. Anyone who grows up to be a young man with such incredible insight into the world and such a positive outlook on life must have phenomenal parents.

Now they get to the house which is a nice enough house except for the fact that it’s completely unfriendly to Patrick Henry. It is not at all handicapped accessible and as he has grown it has impeded any ability for independence and grown increasingly difficult for his parents to assist him as well. He was truly a prisoner in that home.

Of course you know they now get sent on vacation while a house gets demolished and a new one goes up in what seems like movie magic 7 days. And of course it’s an amazing beautiful house furnished in grand measure by Sears and in this episode one of my favorite furniture stores – Havertys.

The house is a very open design as to facilitate Patrick Henry’s movement throughout. I think what I loved about this week’s design is how it designed with an “apartment” recognizing Patrick Henry’s need for additional independence. I also loved how all he has to do it get to the door and say open door and it opens – very star trek The zero entry shower and accessible sinks, stoves, and other features are fantastic as well. Of course every musician and composer needs their own in home recording studio so they set him up with one of those as well

This episode really touched me as I’m going to have to be looking at increasing Katherine’s independence over the next several years and the whole apartment idea seems like a pretty interesting idea. Obviously there are different needs but the whole idea of giving her independence while being nearby obviously isn’t new but gave me inspiration for her future as well as Patrick Henry’s!

…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.

Police learn about autism to help prevent tragedy
Education of police officers and first responders with an awareness and understanding of autism and how to teack and live with those affected.

Hospital boss arrested over al-Qaeda attack by human boobytraps
The acting director of a Baghdad psychiatric hospital is arrested on suspicion of supplying al-Qaeda with women with Down Syndrome that it used to blow up two crowded markets in the city.

Balance is key for family of child with special needs
Guam woman writes about her balancing act in caring for her family including 8 year old Deborah with Down Syndrome.

Boy With Learning Disability Teaches Homeless Kids
12 year old Michael started a non-profit group to give laptops to disadvantaged kids and teaches them to use the technology.

Oklahoma’s only special-needs cheerleading squad competes this weekend in Dallas
A really uplifting story about a special needs cheerleading squad that is competing at the National Cheerleading Association Championships in Dallas this weekend.

Al Hammadi creates history riding Sharqi
A 15 year old created history when he became the winner of a long-distance horse race for persons with special needs.

When a Ramp is Not Enough – Addressing needs of disabled in disasters
The National Organization on Disability (NOD) have launched and emergency preparedness initiative designed to help those who plan for disaster understand and meet the needs of the disabled community.

Disability Issues Hit the Big Screen
Eighth annual London International Disability Film Festival features four days of films, documentaries, workshops and seminars from disabled actors and directors from around the world.

Yesterday morning on the Today Show I saw video of a man being just dumped out of his wheelchair by an individual who appeared to be a police officer. I was so shocked I paused the TV so that I could finish dealing with the morning din of school readiness and revisit this show because surely my eyes were playing tricks on me.

Shoes tied, meds taken and appropriate outdoor gear selected, I went back to the paused TV. Unfortunately, I wasn’t seeing things. Indeed before my very eyes was a man in a wheelchair who was being dumped and all I had to do was read the headline below – CAUGHT ON TAPE – Deputy dumps man from wheelchair to know it was all to sickeningly real.

I sought out the video online and found the article at MSNBC (as I would expect given that I saw it on the Today Show) I re-watched it a few times. It was if I still couldn’t believe it – even with people spelling it out for me step by step. There is somewhere that someone – well heck more than one person felt that treating this individual – prisoner or no – in this manner was so acceptable, so typical that not only is there no apparent reaction (certainly none that I can see on this video) to this by other co-workers standing by and participating but not a single report of this incident was filed.

I read some comments over the net which just disgusted me. This individual, Brian Sterner, is paralyzed from the chest down and identifies himself as a quadriplegic although he has some use of his arms – so someone suggests he’s getting more pity than he should because he’s misidentified as a quadraplegic as opposed to a paraplegic. Aside from the fact that I think that statement is false, please somehow how much of him is paralyzed is relevant to whether the action was justified??? Someone else suggested that this individual somehow deserved this type of treatment because he was in the custody of the police. Have we as a society lost our collective minds???

While I certainly don’t want riots in the street a la Rodney King I sure as heck would like to see some righteous indignation in the State of Florida and some swift action on the part of people in power down there. With power comes responsibility. I am not talking just about taking legal action against the sheriffs involved in the incident – that’s just the tip of a huge iceberg. People with power and responsibility need to make changes – both in education and mindset.

Sensitivity training is obviously in dire need – and to be fair, probably not just at that sheriff’s department….although it’s obviously a good place to start. People in positions of power need more education on disabilities. They need to understand the difference between someone suffering from psychosis vs. someone being aggressive. They need to learn ways to err on the side of caution. They need to understand what someone who has alzheimers or dementia acts like and how to handle those situations. They need to have procedures in place that accommodate individuals who need assistance with activities of daily living during their incarceration. Just because you are in jail doesn’t mean you lose the right to live with dignity.

Cruel and unusual punishment as forbidden in our eighth amendment has also been further defined by the Supreme Court as “a punishment that must not by its severity be degrading to human dignity”. I certainly think being dumped out of one’s mode of ambulation could be reasonably considered degrading to human dignity. If those in power remembered those powerful words – better yet – all of humanity remembered those powerful words of human dignity before speaking or acting it might be a better world.

I can only hope for my daughter’s sake and all our children, that we each take a step to assure the preservation of human dignity in our own lives on a daily basis. Each one of us needs to step up in situations where those other officers failed to and speak out when we see an affront to human dignity. When I see Brian Sterner get thrown out of his chair, I see my daughter being mistreated for her inability to perform something an officer asks her to do or swing at the officer because she believes they are the voices harassing her in her mind. It sends a lightning bolt of fear down my spine the very real thought of what could happen.

Today is just another day. But it can be a day towards a better tomorrow if we each commit to upholding human dignity. I think that’s what Brian Sterner was saying when he told Meredith Viera:

“It can happen to anybody at any time. Hopefully, that’s what will come out of this, that this negative way of dealing with life and people will change.”

It’s my hope too.

Well maybe it’s the cold front that has hit Atlanta this morning or maybe it’s last night’s American Idol making me feel so miserable. My girl Angela Martin was sent home. While I didn’t think she was the best, I have to tell ya, I sure thought she was way better than several they DID put through last night. Certainly, she’s seen her fair share of disappointment and given the very recent death of her father, it probably had far less impact on her than it might have otherwise. She was a true professional in her reaction to the news.

I hope she does continue to try. I hope that she continues to be a strong role model to her daughter. I wish her peace in dealing with the passing of her father. I’m guessing it’s not the last we’ll hear from Ms. Martin.

Larry King Live this week (Thursday, February 14th) is featuring a show on Autism. Should be interesting with several well known parents of autistic children appearing. I’m most interested in seeing Jason McElwain though.

For those of you who don’t know about Jason, let me catch you up. Jason is a child who was diagnosed as autistic as a toddler. He is considered high functioning. In high school at Greece Athena outside of Rochester, NY, Jason served as a manager of the high school basketball team for 3 years. Wanting to repay his loyalty the team coach had him suit up for the last game. Not guaranteeing Jason the chance to play, the coach did put him in for the last 4 minutes of the game. On his first opportunity to take a shot Jason did – and missed. On successive chances however Jason not only scored but scored BIG. Jason hit six 3-point shots and scored a total of 20 points tying a school record.

The bigger story here however has nothing to do with Jason and yet everything to do with Jason. The bigger story is the reception that Jason got just in entering the game. The crowd went wild. With each successive score the crowd went more crazy. (Keep in mind that the team was already well ahead at the time the coach put Jason into the game) With the finish of the game the crowd at the game rushed the floor putting Jason upon its shoulders and carrying him around the gym in triumph. (See the video at YouTube by clicking here – make sure you have a couple of hankies available)

Jason from this vantage point at least seems to be the poster child for successful inclusion/mainstreaming. While I certainly credit Jason to a great degree, one can not forget that along with Jason’s apparently infectious spirit goes credit to his parents who fostered this child’s attitude of staying focused and belief in self as well as a school and community who looked past a label and accepted a person.

If all our children could be so lucky as to have such love an acceptance in a mainstream setting. I wish they were available to more children, more easily, more readily, more consistently. I wish I didn’t have to wish for it.

I look forward to seeing what’s up with Jason now!

The description from the Larry King Live website of this Thursday’s show:

The heartbreak …and hope of autism. Jason “J-Mac” McElwain inspired the world with his incredible shot-making at a high school basketball game. Larry talks to the teen and others about the disorder. Holly Robinson Peete, Doug Flutie and Toni Braxton join the discussion to bust myths and present breakthroughs. It’s an uplifting hour with those who know!

Larry King Live is a nightly show on CNN which airs 9pm ET and 6pm PT.

I got a wonderful letter from Johanna the other day. She was kind enough to write to me and share a piece she did with Lifetime TV’s HealthCorner just this past Sunday. This is a show hosted by Leeza Gibbons.  This segment features Johanna and her son Jack, who is a beautiful child with Down Syndrome and Alopecia. The piece Johanna & Leeza did focused on the teaching aspect of being a caregiver/parent of a special needs child and how to handle the insensitivity sometimes associated with people’s well meaning gestures. This piece is well worth the viewing as many of you (and I right along with you) will relate to much of what Johanna has to say. It’s available by clicking here.  It will be re-airing March 23rd on Lifetime TV (check your local listings )

I thought it really connected well with the piece done at My New Normal that I featured on the 29th of January (Things Not to Say…) Some of the commentary by Leeza left me looking further at what was clickable on the website. Filed under the category of you learn something new every day if you’re open to it, I learned (thank you Johanna) in addition to all the other things Leeza Gibbons does, she runs The Leeza Gibbons Memory Foundation and Leeza’s Place which is a support place for caregivers of loved ones with memory disorders. It was founded in honor of her mother who has Alzheimer’s disease. On the front page of Leeza’s Place is a link on the left hand side for the Ten Commandments of Caregiving

While I highly recommend you check out the whole list, Number 5 is mentioned in the commentary by Leeza after Johanna’s vignette which is DO NOT TAKE ANYTHING PERSONALLY. Boy isn’t that the truth! It’s something we have to learn to do because inevitably someone is going to say something off that Things Not to Say list. It’s not so easy to turn the other cheek some days, especially when people say things in front of your child which are so offensive and you KNOW that your child has caught on to at least part of it.

I remember one time my daughter was attempting to open a door at a store and it was taking a bit of time. Anyone looking could see that she was different and learning a valuable lesson but this one individual apparently didn’t think that was important enough to give a minute of his time. He made an incredibly rude and offensive remark (which time has graciously erased from my mind in specific) which Katherine understood enough of to be crushed. I remember turning around and giving a clever and scathing reply but the reality is it did nothing to fix how Katherine felt. I would have better served her by ignoring him and addressing her pain directly.

The reality is people say things most of the time without engaging their brains – myself included. I sometimes wonder if in my life before Katherine I would have been that individual who could have said so unkind a thing. Ok, I know I wouldn’t have said it directly and hurt a child’s feelings, but if I’m honest with myself , I sure might have muttered under my breath about the time and my precious schedule. I am a different person than who I was pre-Katherine in so many significant ways, not the least of which is how I try to approach and interact with people. I know that my approach with people has changed since that day as well. I always try to (not always successfully) approach things that people say with the assumption that they meant it in the best way possible. Given the opportunity to deal with that same individual again, I’d like to think my response would be something like “Oh, that’s so kind of you to offer to assist us with the door however my daughter is working on a new skill and we surely do appreciate you waiting a moment while she succeeds at opening the door.” and I’d present it with the sweetest smile I could muster.

I think this is what Johanna’s piece is trying to help all of us remember – DO NOT TAKE ANYTHING PERSONALLY. Educating people about differences is critical because fear always springs from ignorance. And most of the time when people say something that’s just wrong it’s out of ignorance. The best way to fight that is with education. Thanks for reminding us Johanna!

If you have something of interest like Johanna did why not drop me a note? Who knows maybe I’ll feature it here too!

I must confess, I’m holding my first ever Super Bowl Party. I’ve attended plenty of them, but never held one. First, because I can count on one hand how many times my team has been in the Super Bowl and secondly, since I’ve had Katherine that type of thing has just seemed like it would be too much for her to handle. I came up with a way to do it however which will make it reasonable for all involved.

We are only inviting 4 people and everybody is bringing something. I know it seems ridiculous that I’m calling that a party but it will be for me!! Not only will my beloved Giants be in the game but I get to watch it with Katherine!! I can still remember being with Auntie Joan teasing Katherine how to say TOUCHDOWN while watching the University of Michigan play in the Rose Bowl under Bo! Contrary to what you are thinking – I am not a huge sports fanatic or even a huge football fan but I do follow it. However, I grew up with two things – Star Trek and the Giants – and I will forever be loyal.

Even more exciting however is the Pepsi ad (yes I also happen to be a Pepsi girl living in the land of Coke) that will be airing during the Super Bowl. It’s by a group of Pepsi employees who are part of a group called EnAble which is dedicated to creating a more inclusive environment for people with different abilities. They have taken a joke described as a typical deaf joke (my step-sister says this is correct) and made a commercial about it. I laughed my proverbial A** off watching it. Proves no matter what the different ability we ALL have a great sense of humor.

While I was sent the link to it on YouTube I’ll give you the easier link into the Pepsi Site (just click here). Better yet, after you’ve viewed the commercial and the behind the scenes video click here and tell Pepsi thanks for showing people of different abilities in their ads and how we hope they will continue this trend and represent others of different abilities within their advertising.

No matter the outcome this will already be the best Super Bowl Ever!!!

And for those of you who are fans of Hitchhikers Guide to the Galaxy you’ll understand it was numerically destined to be!!

Oh I have goosebumps!! We’ve not only moved that bus but today we got to move that horse trailer as well!! I think the Luther Family is amazing. I am so happy that EMHE has decided to help them. To watch people who have devoted their lives as the Luther’s have to helping our special kids and family members get some reward for that effort was truly amazing.

The Luther family runs a therapeutic horse riding facility. I love this. I know the impact this has for these children and their families first hand. This past fall, Katherine started riding in a therapeutic program and actually trained for the State Special Olympics.

Katherine is a different person on a horse. Things that would frustrate her she does without issue. Things that she never would have tried, she’ll try. There is a sense of calm and joy that just is pervasive.

Katherine rarely uses her right hand. Hey, if it was as hard for me to use my right hand as it is for her, I doubt I’d use it very much either. She works to grab rings, hold reins, and numerous other things. If you have the opportunity to involve your child in a program like this – regardless of their disability – I can’t recommend it highly enough!

If the children the Luther family get a tenth of what Katherine gets from the experience, the team at Extreme Makeover Home Edition will be pleased to know what a profound impact their build will have on that family, their riders and that community. What a blessing! Welcome home Luther Family! Welcome Home!!