thespecialparent.comSpecial People Parenting Special Kids

This week and next we’re getting ready for Katherine’s participation in the Mr. & Miss Special Henry County Pageant. She’ll be competing in the teen division. We have the obligatory new dress and new peek-a-boo toe shoes (yup two pairs – thanks Zappos for having them on sale!). We had a *process* done to our hair to straighten out the curls for a few months (mom likes this one – while our Instyler has made life much better I don’t need to add hairdresser to my full-time resume) and we’re excited about the next Saturday morning when you can find mother and daughter getting manicures and pedicures (ok, I’m gonna skip the pedi) and then Katherine will get her updo and become the glamour queen we already know her to be

All this beauty for the outside but as I constantly remind her it won’t matter a bit if her behavior doesn’t reflect the beautiful young lady we can see on the outside. Unfortunately I think it may be a lesson I’m the only one out there teaching my children. Increasingly treating people poorly seems to be acceptable if not downright in vogue.

I read a blog posting today that a childhood friend of mine shared on her facebook page. Click here and take a moment to read it for yourself. It’s absolutely worth the read – well written and makes a point I don’t think anyone thinks of enough these days.

This post focuses on treating service people with respect – not talking on your cellphone while conducting business being its jumping off point. Saying Please and Thank You to your waiter/waitress, making eye contact with a manicurist or hairdresser….and absolutely – I agree! However, while I agree with the important point she was making about treating these people who perform duties that make all of our lives a little bit better, I thought it stopped one point short that we’d all do better if we treated EVERYONE with respect.

Too often I’m reminded of this because I see how people look at Katherine, talk about her as if she’s not even there when she’s sitting at the table next to her, or worse yet, ignore her as if she does not matter. As if because she is not the *same* as them she is somehow lower on the totem pole of life (the part that is buried in the ground). When is it that it became ok to treat ANYONE with less than the same dignity that you expect yourself?

Sure that’s a rhetorical question. Throughout history people have been treated with less dignity than they deserve. History is rampant with it. Native Americans, slaves, the holocaust – or any or the more recent genocides. These are just a small sampling. Treating individuals without dignity continues to be an acceptable practice. It’s probably more acceptable with the disability population than with any other in the world – it’s probably one place that countries could find commonality. Think about it….its ok call people “retard” “idiot”. It’s ok to look away at a person who is in a wheelchair. It’s ok to place people in an institution because it’s “easier” than helping them lead productive lives as a part of the larger society.

I couldn’t agree more that we need to treat people with dignity, but stopping at service people (which for the record are notoriously treated like crap – a true travesty) is really just several steps short. Grandma Murphy always told me pretty is as pretty does. and it’s completely true and unfortunately apparent that too many people didn’t have enough exposure to Grandma and if they did – they’ve forgotten the lesson or failed to pass it on to their progeny. Most of you reading this are parents of at least one special needs child. You get treating your own child with dignity is important. You may also extend that to all people with dignity. How do you treat the people you meet every day? Your landscaper? Your mailman? The custodial staff at your office? The lady at the dry cleaners? The stranger struggling to get their groceries in the car while wrangling a 3 year old (oops – that was me) Teaching children isn’t as much about telling them how to treat others as it is MODELING the behavior you believe is appropriate and acceptable.

Everyday holds an opportunity to lift someone up, give someone a smile. A simple hello and a kind look may be all it takes. Think of how beautiful you’ll look. Most days, my daughter is the most beautiful young lady on the planet. Not because of her straightened hair, her manicured nails or gorgeous coral halter-top dress but because she never fails to treat everyone as if they are the most important person on the planet. How much we could all learn from her!

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I was pleased to receive notice about a speech an amazing woman, Julie Beckett, gave recently to a group in Madison, WI (I am so going to have to get up there someday with the excuse of visiting my brother)

Julie is mother to Katie, who contracted viral encephalitis when she was 6 months old. The virus caused severe damage to her body, including her ability to breathe. She was placed on a ventilator and spent three years at a pediatric intensive care unit. Created in 1982, the home and community-based waiver program often called the Katie Beckett Waiver program, allows children who would otherwise be hospitalized or institutionalized to get treated at home and continue to maintain Medicaid eligibility. Katie was the first recipient of this waiver. Her mother, Julie Beckett, worked with Congress to obtain this waiver.

In her keynote, Julie shared the timeline for the national healthcare reform legislation:

May 20: bill will be introduced
Aug 22: they hope to pass it
Jan 2010: they hope to have it in place

Julie shared that they are moving very quickly to get this reform in place and that the current draft of the bill does NOT include provisions for individuals with disabilities; it basically treats everyone the same whether they have special needs or not.
She emphasized that her decades of advocacy work have taught her that even worse than being uninsured is being *under-insured*–and that we need to make sure that people with special health care needs are included in this bill.

Katie and Julie Beckett asked us to participate in the phone-calling efforts to change the bill to include provisions for individuals with special health care needs.  We can’t leave individuals with special health care needs behind as we “move forward.”
Tomorrow, May 13^th is the national call-in day for this issue
.   Please see the instructions below from the ARC & UCP on how to help tomorrow.

It’s easy to do and so important.  Please share this and thank you very much for your help!

The Arc and UCP Needed to Make Calls to Senators on May 13^th

Fixing the health care system is a top priority this year for Congress and the Obama Administration.   While there is commitment by some to include long-term supports and services in health care reform, there is no guarantee that this will happen without strong public support.

The Arc and UCP are working with several national disability and aging organizations in sponsoring national phone-in days to show public backing for including long-term supports and services in health care reform. We must establish this public support with Congress. We want this joint effort to generate at least 10,000 phone calls to the Senate on May 13^th.

Toll Free Number: 866-459-9232

What to say:

• Hello, my name is ____ and I live in ____.
• I believe that health care reform must include long term services and supports.
• I urge Senator ____ to support including long term services and support in health care reform.
• This issue is so important to me because ___________________
• Thank you.

The Coalition for Citizens with Disabilities is providing this toll-free number for constituents of member organizations to call their Senators.  We need to demonstrate a strong response from The Arc and UCP, your members, and your constituencies.

» Spread the word «

Dial the toll-free number between 8:00 AM and 6:00 PM Eastern and ask to be connected with your Senators. If the line is busy, try back later. Once you have completed the call, be sure to give feedback.

Background:
Why Include Long-Term Supports and Services
in Health Care Reform
While 48 million people lack insurance/coverage for their health care, 250 million people lack insurance/coverage for long-term services and supports. Ten million Americans daily need long-term services and supports with 40 percent of them under the age of 65. Nearly half of all funding for long-term services is provided through Medicaid that requires individuals to impoverish themselves to receive supports.

Virtually every American will face the need of a family member needing long-term services and supports. And yet, the nation lacks a comprehensive national system for financing and delivering long-term services and supports to individuals with disabilities of all ages.

While there is commitment by some Senators to include long-term supports and services in health care reform, there is no guarantee this will happen.

The Senate Finance and Health, Education, Labor and Pensions Committees are are scheduled to finalize their legislative proposals for health care reform within the next two to three weeks. The bills are expected to be merged on the Senate floor in June. The three House committees are also developing their own legislation, but are not as far along as the Senate.

We must call on the Senate to provide real health security by including long-term services and supports in health care reform legislation!

Thanks to Johanna Mattern Allen, the ARC and UCP for this information

© 2009 The Disability Policy Collaboration

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…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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and all thru the house the only quiet was that one little mouse! And that’s because he couldn’t get a word in edge wise for all the ruckus from excited children! It’s pretty amusing actually – It’s the first year that our youngest actually gets it and Katherine is quick to show her vast knowledge of everything Christmas – be in decorating trees, making presents, wrapping or the tradition of feeding Santa. She’s quick to remind him she’s the authority on all things Christmas.

It’s also interesting the difference in the two Katherine’s that I see. Katherine is quick to succumb to her innate desire to be a child and the center of all attention. Just envision the shining star over a manger in Bethlehem…..kinda like that But when given the opportunity to rise to the occasion she can really surprise. Maybe that is the key – being given OPPORTUNITY.

I’m the first to admit – I find it hard to believe my kid is 17. She’s still my babygirl! LOL I do however TRY to give her opportunities to act her age wherever possible. Not that I’m perfect about that. We’re blessed however to have a woman who comes in to help us – because of Katherine’s behaviors in large measure in addition to working with Katherine on her behaviors and helping us handle her when she’s out of control, she helps Katherine with all types of things. Getting her behaviors under control, activities of daily living and life skills – things she will need to be a productive member of society and to hopefully have an opportunity to live on her own.

Katherine’s helper/worker/support person is paid for by a medicaid waiver. For those of you who have one for your loved one you know what a blessing it can be. For those of you who have someone on a waiting list you know how important it could be. For those of you who do not have or know about medicaid waivers let me give you the basics in a nutshell. A waiver as described in the Merriam-Webster’s dictionary as “the act of intentionally relinquishing or abandoning a known right, claim, or privilege ; also : the legal instrument evidencing such an act”. In this case it means that in certain defined circumstances medicaid will allow individual states to abandon certain rules for granting medicaid payments for things it wouldn’t otherwise pay for or waive certain requirements (such as financial ones) to give states flexibility to allow medicaid coverage. The waivers differ from state to state. You can find out more about waivers that may be available to you in your state by checking here.

The waiver would be a wonderful thing *IF* people who needed one could get one without waiting on a list for YEARS. The other major problem is that while waivers are federally funded – they are managed by the state and are not transferrable so once you have one you either stay put or – and it’s a big or – you start the whole process over. When I tell you that starting over is not desirable – just trust me on that.

Waivers are actually a pretty cost effective measure too – keeping Katherine at home costs the state FAR less than if the state needed to pay for her to be institutionalized.

Its for this reason I’m hoping some of you will be willing to go over to change.org and support an intiative for waivers being fully funded. You can get directly to this initiative by clicking here. Some of you may have seen the widget I place on the page the other day.

I hope that you all have the best of holidays – whatever it may be that you celebrate. Holidays are for families and bringing out the best in people. Waivers are like a present you get to have everyday – it gives those of us blessed enough to have one for our loved one the ability to have them living at home or other settings our loved ones approve of -  giving them opportunities that you and I just assume we will always have. For us, Katherine’s waiver means everyday is a blessing and an opportunity for her to grow and rise to that occasion.

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Oh it’s being covered everywhere but honestly my head has been buried in the sand dealing with the first week of school here. (yea – we end early too) so I’ve just been reading along and if you haven’t catch up by clicking on these links here:

• Tropic Thunder – Once Upon a Time…There was a Retard
• Sorry Mr. Stiller you’ve crossed the line
• Never go full Retard
• Disability groups organize
• Just the facts about Tropic Thunder

As of this writing my understanding is that the viewing Dreamworks promised isn’t going to happen until the 11th hour on Monday just before this movie premieres. I think Patricia Bauer has done an amazing job of covering this issue so I’m not going to add much more except that the statement below pretty well says what I’d like Ben Stiller, Jack Black and Robert Downey Jr to know. I want to believe these are good although misguided individuals who don’t get the greater harm they are doing to our loved ones. Hopefully they will read the following and reach out to learn more

THE R-WORD ISN’T JUST HURTFUL,
IT’S HATE SPEECH.

WHAT IS HATE SPEECH?

Hate speech occurs when a majority group freely makes jokes about a minority group including negative stereotypes and negative images, not just language. It is commonly seen as harmless by the majority, but it sets the stage for more severe outlets for prejudice, harm and abuse.

PEOPLE WITH DEVELOPMENTAL AND INTELLECTUAL DISABILITIES ARE AT GREATER RISK OF VIOLENCE.

- 1 in 3 children with disabilities are victims of some form of abuse, sexual abuse, or neglect. (Sullivan & Knutson, 2000).

- Individuals with developmental disabilities are 4 to 10 more times more likely to be victims of a crime than people without disabilities (Sobsey, et al., 1995).

- Children with developmental disabilities are at twice the risk of physical and sexual abuse compared to children without disabilities (Crosse et. al., 1993).

PEOPLE WITH DEVELOPMENTAL AND INTELLECTUAL DISABILITIES ARE DISENFRANCHISED FROM JUSTICE.

- Many people with intellectual disabilities are not able to articulate the abuse they’ve sustained.

- Many victims with intellectual disabilities are not perceived as credible witnesses.

- Abuse often occurs as part of name calling, bullying, hazing, or other targeted attacks based on disability status. THIS IS A HATE CRIME.

ENDING THE USE OF THE R-WORD IS MORE THAN A “POLITICALLY CORRECT” NOTION.

- “Retard” and “retarded” are derogatory and dehumanizing terms– on par with the N-word when used to describe African Americans, and various hateful terms used to describe members of the Jewish, gay and lesbian and other minority communities.

- Self-advocates with intellectual disability have clearly stated that negative language leads to harmful action, discrimination, abuse, negative stereotypes, disenfranchisement, and violence.

SHOULDN’T PEOPLE WITH INTELLECTUAL DISABILITY JUST LIGHTEN UP? IT’S A JOKE!

- NO! People with intellectual disabilities have a history of institutionalization, genocide, forced sterilization, segregation, and being regarded as ‘less than human.’

- More than any other group, they experience record unemployment, significant physical, mental and sexual abuse, and limited rights.

- This discrimination and victimization continues, in large part, due to antiquated, discriminatory portrayals in the media and pervasive prejudice.

WHAT’S FUNNY ABOUT THAT?

As my mom used to say – WORDS HAVE MEANING – BE SURE YOU MEAN WHAT YOU SAY.

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As Good Morning America played in the background of our morning chaos yesterday, I quickly hit the record button on the TiVo. A parent and her toddler who is autistic were forced off an American Airlines flight. The mother took a train up to New York City to appear on the show.

I’ve watched it all now and let me tell you how much I hate these stories. Unless you’re there it’s always hard to judge in hindsight. However I still felt it was worth putting out there. I feel for this mother!! I have been on a plane with both my daughter who has some truly autistic behaviors (not that the paranoia from Katherine’s psychosis doesn’t make getting thru airport security bad enough). Quite frankly it became so difficult we stopped flying with her and at the time we made that decision she was flying once a month from Georgia to New Jersey to visit with her father. I know that this decision wound up working for us because her father came to recognize the real peril of her behaviors and the potential for real problems. Now he comes here instead.

I’ve also flown without my children but had other peoples children on the plane. Some of these children were without question disruptive, chaotic, trying. It was mayhem. Do I as a fellow passenger wish that the child would have been more quiet, more under control? Sure! Please – I don’t want 4-5 hours of my own child in chaos let alone one I don’t know. Reality though?? Please. The reality is that with airlines today I’d like to act like some of those kids were. The difference is my decades of additional experience and my brain’s ability to exhibit impulse control. Now take away the decades of experience and the fact that even the most “normal” child has impulse control issues because their brain is not fully formed.

What is it these days where adults are so self-absorbed that they can’t handle some chaos or turn it around and revel in a child who is only acting out like we wish we could? Where is a helping hand to assist a mom who has a child who’s boisterous or fidgety because you have all been waiting on that plane or in the terminal for what seems like forever?

I watched the mom – Janice Farrell calm her son on TV. It’s fairly obvious that she has the ability to control the child given the right environment. Certainly the one described by Ms. Farrell (which you can see by clicking here) was anything but the right environment for a child with any special needs, let alone autism. I am guessing that Ms. Farrell could have done as much to calm her son on this flight had she been met by understanding rather than judgement. The airline – American – released a statement saying

“The child had been crying and screaming uncontrollably, to the point where the child’s well being was in question,” American Airlines, the parent company of American Eagle, said in a statement. “Though, ultimately, the parent’s violation of FAA regulations was the cause for removal, both situations contributed to an uncomfortable and potentially unsafe atmosphere for our passengers and crew.”

Ms. Farrell says that she did comply and on that issue all I can say is who knows? I know she says she allowed them to stow the bag. Let me put on the record that I personally don’t believe for a minute that this was the issue. I’m guessing that like many others, that flight attendant wasn’t in the mood to deal with a challenging child. I am guessing that to top the poor attitude that the flight attendant exacerbated an already difficult situation by her lack of understanding how her tugging at the seatbelt and tone of voice were only adding fuel to the fire. I’m guessing that had she been given the opportunity she could have calmed her son just as she did on live tv…..without a bunch of nasty, judgmental people harping on her and her small child. No toddler will do well under those circumstances let alone one that has problems interpreting social signals and sensory input!

The reality is that the airline does need to make sure that it’s safe for everyone to travel however it just seems to me that these things just didn’t happen before 9/11 and now I seem to see them all over the place. Everyone had a little more patience because the whole airport thing was a whole lot less grueling. The reality is at worst I would guess that this child posed a nuisance and a headache factor for some employees and passengers who were either basically intolerant or in a particularly bad mood that day. I get needing to keep people safe from terrorists, not from terrorized 2 year olds. And face it – that child was terrorized. Even if I assume that Ms. Farrell’s view is biased – without question the manner in which we are now required to travel with increased security it torturous for even the most seasoned traveler.

Seems to me that human decency requires some patience with the youngest of us. We need to go back to viewing our world as a larger family of whom we need to be supportive and caring of. Let’s face it….turning the plane around, going back to the gate took as much time as allowing this mother the space to help her child calm down. I don’t know why this woman and her child chose to travel via air. I don’t even care. It seems that disabilities have to be accommodated – and American Airlines blew it on this call not once but twice. Their first opportunity was blown by the flight crew – pilot included. The second was from American corporate who decided than rather to suggest that a policy of Ancora Imparo (thank you Dr. Rick Rader of Exceptional Parent magazine for introducing me to that term) which means ‘I am still learning’ in which maybe they took some accountability for their employees behavior and remembered we all are continually learning and we need to allow new experiences to give us growth rather than duck behind the blame game. What an opportunity they missed by not acknowledging they had something they could learn from this rather than casting blame away from them and their employees.

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Well I missed the interview in the summer chaos that is our home but found a write up on it on the Good Morning America/ABC News website. Jenny McCarthy and Jim Carrey were interviewed on Wednesday’s show before they took to the streets of Washington DC to March on Washington with several thousand supporters to ask for support in both “greening” vaccines as well as reviewing the current vaccine schedule for children.

Let me make it very clear from the outset, popular or not, I am vehemently opposed to those who feel that the potential for autism is justification for withholding any and all vaccines from their children. I feel it is irresponsible parenting and irresponsible citizenship. I’d rather have my child here and autistic than dead from pertussis or measles or mumps or any of the other things vaccines protect our children and the population as a whole from. I am sure at this point some of you are saying but you just don’t understand what having an autistic child is like!!! You’d be right. I don’t know the full weight of it. I do know the behavioral aspect of it pretty sufficiently even if Katherine isn’t autistic. I wouldn’t wish autism or it’s devastating effects on any child or their family. I do not believe however that the scientific evidence currently shows conclusively that vaccines are the cause of autism. I do however believe that there are certain correlations that need far more investigation than they have gotten. I also believe that you can’t have the group that says to you “vaccines are good, and important” (CDC) being the ones responsible for investigating if maybe they were wrong….maybe something was missed….obviously the problem is not global but SOME kids may very well be having reactions to the vaccines. What makes those kids different from the ones that do? It’s sure as heck worth investigating further.

The argument that I felt particularly compelling from this march was the schedule of vaccinations. The basics of the proposal seem to be that rather than skipping immunizations that in addition to removing the remaining thimerosal from the vaccines and extending the vaccination schedule so children and their small bodies are given additional time in between vaccinations to recover and regain strength so that their immune system is ready to fight with the next vaccination. Maybe it won’t do any good – and I am not a doctor – but the benefits of investigating this as a possible method to understanding if the vaccination schedule has some relationship to the increase in autism certainly seems reasonable and responsible.

My son is 2 3/4 years old. Our family is blessed. My son is in the 149 out of 150 who has not developed autism. I know that when he was an infant though I prayed after every vaccination. I know that Katherine had seizures a couple of times when the vaccination spiked a fever. I can’t imagine what it would be to give a vaccine and to “lose” the child you had once known to something like autism. I couldn’t imagine that any more than someone could imagine what it is like to have someone tell you that your child has had a massive stroke and may never walk or talk. You just can’t know unless you’ve experienced it first hand. He had the same vaccines. What is the difference between him and my friend’s son who was diagnosed with Aspergers? Who knows?? Certainly not the medical profession.

I can’t help but feel that for a condition which everyone seems to agree affects approximately 1 in 150 children that more people in the medical community aren’t alarmed and aggressively pursuing answers, treatments and better yet, cures? It certainly seems that none of the suggestions I’ve heard or read about from this Green the Vaccine March would be irresponsible.

I am surprised at how little coverage this March seems to have gotten. There has been speculation that there has been pressure brought to bear on the networks and other news outlets to overlook covering this event because of some fear that it would lead to widespread vaccination moratoriums by panic stricken parents. I hope to heavens sake that I am just naive in thinking that we still enjoy freedom of the press. It seems to me that anyone who actually thinks that withholding information in that manner or being unwilling to engage in debate and discussion would think that a parent wouldn’t view that with the very real suspicion it deserves. I never met a topic that couldn’t benefit from healthy, respectful debate. Respectful of course being the operative word. You don’t have to like a persons position to be respectful that there is someone who has an opinion other than your own

The reality is we have far too many children suffering and there must be a reason. It’s imperative that the debate keeps autism in front of people so that we can continue to push for research and answers. Unfortunately, children are not voters. We need to remind those in power that for every child with autism there is a mother, a father, a grandmother, a grandfather, an aunt, an uncle, a cousin and on and on who will vote on their behalf. We are our children’s best advocates. Whether you subscribe to one side of the debate or the other everyone can agree that answers need to be found and found now.

Thanks to TACA (Talk About Curing Autism), The Huffington Post, and Barbara Fischkin at the Huffington Post

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I posted about Trig Paxon Van Palin the other day. He is the beautiful son of the Governor of Alaska and her husband. In their press statement on the birth of this their 5th child, the stated that:

We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives.

It was with that thought in mind that I felt compelled to bring this article to your attention. The site, Beaconcast has a provoking article online about eugenics. It’s a word that very much stirs a myriad of emotions. There have been incredibly famous advocates of the philosophy, believing it was altruistic, and yet there are so very many who believed that it was immoral. Certainly it’s use as a justification in Nazi Germany would prove its immorality. Yet it’s not just regimes like Nazi Germany that have used it. US President Woodrow Wilson helped to have Indiana (the first of over 30 states) adopt legislation in the early 1900’s for compulsory sterilization of certain individuals (the mentally ill, mentally retarded). The law was overturned in Indiana in 1921 but there are laws still on the books that are rooted in the philiosophy of eugenics.

The debate should heat up when you consider that disability advocates now state that 92% of fetuses diagnosed with down syndrome are aborted. Is this not eugenics – a “cleansing” of the human race of those considered genetically inferior? I think back to my pregnancy with Katherine.

My pregnancy was considered high risk because of my asthma and regular inability to control it. While I underwent test after test monitoring it’s effect on Katherine I was the willing guinea pig: bloodwork, ultrasounds, fetal monitoring. In and out of the doctors office and hospital week after week I went like a good little patient. Never once did I think about what would happen if they told me something was wrong. What the heck would I have done? Would I have continued the pregnancy? What if I had known that she had “something like” Down Syndrome? What if I had known what I know now about all the difficulties she would have? What would I have done? Would I have terminated the pregnancy? Would I have continued on and dealt with the outcome?

I can honestly say I don’t know what I would have done. I’d like to say with some certainty I wouldn’t have terminated the pregnancy because in general I’d like to think that’s me. But I was young (23) and in a new marriage spawned of that very pregnancy and without the support I depended on most (my mother had passed within a year of this). I was a mess quite frankly. And what would the doctors have said to me? Would they have encouraged me to terminate the pregnancy? Would they have presented me both sides of the equation? I didn’t have to worry about that because not a single test ever showed a problem, not a single test ever gave any of us an inkling of what was to come.

Even at her birth when we knew something was wrong – did anyone acknowledge it? When they had to acknowledge that ½ of her brain had been destroyed by a massive stroke, their advice was to put her away like a piece of broken luggage in an institution and move on – and that was in 1991. I didn’t take that advice but that’s just me.

Remember there’s a statistic that 92% of people who know there’s a difference in their child choose to terminate. Somehow I feel like the medical profession is failing 100% of their patients. It is hard, to be fair, and put yourself into someone else’s shoes however I don’t think that an unbiased picture of the pros and cons of having a child with a disability is being given.

Before you all bite my head off about how dare I say there are cons – there are CONS in parenting ANY child so its completely unfair to say there are no cons in parenting a special needs child. Anyone who has walked in our shoes can’t be honest with themselves if they don’t say this is the hardest job you’ll ever love. (sorry Army advertising team) Maybe it’s because they don’t know the joys of our special children, they really don’t talk about it. Obviously as physicians, they know of the potential medical pitfalls of many special needs children. They do not however know the joys, insights, and incredible love – and I’m not sure who’s educating them.

The current ignition point for this revitalized debate is David Tolleson. He is the executive director of the National Down Syndrome Congress, a not-for-profit based in Dunwoody, GA as well as a local councilman. Mr. Tolleson says he is: “Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome.”

Mr. Tolleson is of course concerned specifically about the down syndrome population but it truly extends to anyone with a disability. What would a parent do if they knew their child would have epilepsy, cerebral palsy, tay-sachs, sickle cell anemia, juvenile diabetes, or knew that their child might be born missing a limb(s) or would likely develop autism. What would they do? What would you do?

Tolleson states:

“All parents envision what their children will turn out to be, but very few of them live according to their parents’ dreams,” he says. “Rather than the Hallmark version, your children are formed by the filter of their own lives and their own experiences.”

He’s right on the mark you know. I am certain that given the challenges of raising just about any teen were disclosed more specifically in advance, the human race would have long since died out.

I guess my problem is that statistic of 92% stirs me in a place so deep I’m driven to revulsion. Who’s to say what will be the next trait determined to be socially unacceptable? Red hair? Green eyes? Deafness? Blindness? When does it move to segregating those considered inferior from the rest of society?

Tolleson makes an incredibly important point in his argument however – above and beyond the specific elimination of any population. With the decline and elimination of various disabled populations there too will go support for care, research, and increases will happen in exclusions from insurance policies.

There are supposed to be differences in our society, it’s what makes our culture rich. Who gets to decide the differences that are ok and those that should be eliminated or what’s acceptable and what’s not. Who is to say it won’t be your kid? Who is to say it won’t be mine?

I’m sure I’ll get messages that are less than thrilled about this post and that’s ok. It’s actually supposed to stir the debate. I know my child. I know many others with a variety of disabilities whose lives have touched mine and made me better for knowing them. I would hate to think that some shortsightedness on someone’s part made it so that someone else missed the incredible opportunity.

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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.

If you enjoyed this post, make sure you subscribe to my RSS feed!

…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.

Students with needs discover their talents
Program in Mamaroneck, NY helps teens with a variety of special needs plan for their futures to ensure they have the basic life skills they will need after leaving school

Students raising money to help Gilbert teacher
Students are fundraising to help special education teacher Juan Reyes offset the approximately $600-700 annually he goes out of pocket to provide for his students with special needs.

Synagogue to hold service for special needs children
Syangogue holds service for special needs children and their family. Serving West San Fernando and Conejo valleys

Disability Advocates want name change for Missouri state agency
Advocates lobbied at the Missouri state capital to have the words mental retardation dropped from the state agency name

US Airways helps special needs dogs
US Airways is helping to train service dogs with their puppies in flight program

Family shocked by MD’s speed over 11 year old
Muscular Dystrophy’s impact on an 11 year old boy and his family

Three documentaries put faces on autism
Realistic portrayals of autism hit the big screen with Autism Every Day, Autism: The Musical and Her name is Sabine

Little Horizons Produces Early Childhood Education DVDs for special needs children
Fun with the ABC’s allows special needs children and able bodied children to have fun side by side while learning their ABC’s

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