Special People Parenting Special Kids

This article was submitted to me and unfortunately I have been sidetracked. That seems to happen alot these days. Life has a way of doing that to so many of us.  While this article talks specifically about Down Syndrome research, there is room to be concerned about funding for many issues regarding special needs children. Hopefully this will get all of us thinking about reaching out and speaking out about prioritizing spending in Washington so those who cannot speak for themselves.

I recently went to a talk by Dr. William Mobley, a Stanford Down syndrome researcher, and became aware of the recent breakthroughs in Down syndrome research that could lead to treatments to improve cognition, memory, speech and learning and reduce the effects of Alzheimer’s disease. I was very excited about the research, but was saddened to learn about the reduction in funds that the federal government is putting towards this research. In 2004, the National Institutes of Health (NIH) funded $23 million in Down syndrome research, whereas by 2008, NIH funding had decreased to $17 million, a decrease of more than 25%. The $17 million in NIH funding for Down syndrome research in 2008 translated to approximately $42 per person with Down syndrome. Other conditions receive significantly more. See www.dsrtf.org — The Down Syndrome Research and Treatment Foundation (DSRTF) — for more information about Down syndrome research and to sign up (lower right-hand corner) to receive newsletters and keep up with new research developments and breakthroughs.

Having been amazed at how close Dr. Mobley is to turning his research into a potential treatment for our loved ones (he’s found 2 drugs that work in mouse models of Down syndrome – one that improves cognition and one that reduces the effects of Alzheimer’s), I wanted to do all I could to move his and others’ research forward. Dr. Mobley said we could do 2 things to help. One is to donate to DSRTF (www.dsrtf.org), which is where he gets much of his funding, with more than $3 million in DSRTF research funding given to Stanford since 2004. The other is to write to our Congress people to ask them to join the Down Syndrome Caucus and to fund Down syndrome research at a higher level. Since then, I’ve done both. Here’s a generic form of the letter I wrote to my Congress people that my friends sent to their Congress people. Please feel free to use any or all of this letter to write to your Congress people and add a personal touch by talking about your loved one with Down syndrome. Go to votesmart.org and type in your zip code to find them. If you click on their name, you can find a link to their web mail address, click on it, and then cut and paste your letter into the form. You can also write directly to President Obama by going to the following website: www.whitehouse.gov/contact.

If we all work together, we can be part of the breakthrough.


Your name

Your address line 1

Your address line 2

Senator Dianne Feinstein

331 Hart Senate Office Building
Washington, DC 20510

Dear Senator Feinstein,

As the <parents/aunt/uncle/friend> of a child with Down syndrome, we respectfully ask that the government fund Down syndrome research at a higher level. Due to recent breakthroughs in genetics and Down syndrome research at facilities such as Stanford University, a treatment appears imminent. If individuals with Down syndrome can live more independent lives, the government could save much of the 6 billion dollars spent annually for people with Down syndrome, and these people could become tax-paying citizens. The long-term benefit to our society is huge. The initial, up-front cost of the research could, in the end, save taxpayer dollars.

My name is <name> and I am the <mother/father/aunt/uncle/friend> of < person’s name>, < info about the person – for ex., a sweet, playful, happy 2-year-old boy with Down syndrome.> <mention specifics about the person – for ex., His older brother and sister are so proud of him whenever he accomplishes something that comes naturally to others. They cheered him when he signed his first word, learned to crawl and took his first steps. We are all better people for having him in our lives.>

However, <my husband and I> worry about what his future will be like. Will he be able to live independently, or, will he need to live on government aid all of his life? We’re learning about new research developments in the field of Down syndrome and are very hopeful that a treatment will become available to our son within his lifetime. <My husband and I> thank you for the opportunity that early education programs and mainstreaming has given and will continue to give to our son. If the new research developments can be turned into drug treatments, and his cognition improves by a mere 10-20% beyond what it would have been, he could support himself financially when he grows up and he won’t need to live on government assistance as an adult.

People with Down syndrome are living longer lives, many into their 60s and 70s, but nearly all will develop Alzheimer like symptoms by the time they are in their 40s. A link has been made between a gene associated with Down syndrome cognitive issues and the cognitive issues associated with Alzheimer’s disease. The research being developed for Down syndrome has the potential to delay the onset of Alzheimer’s, not only in people with Down syndrome, but in the general population as well.

According to Stanford Down syndrome researcher, Dr. William Mobley, “brain function can be modified, in both children and adults, and we are learning how such changes occur. Therefore, today, we can boldly predict that Down syndrome is not too complex to understand, it is not too difficult to treat, and it is not too late to treat.” Dr. Mobley is testing a couple of new drugs on mice. These drugs sound very promising, but he needs funds so he can turn his research into treatments for people with Down syndrome and other cognitive disabilities as well as people with Alzheimer’s.

I think Dr. Mobley said it best when he said, “During times of tight budgets, it may be tempting to de-emphasize research. And yet, research – particularly medical research – is the best investment we can make in health care for our country. If we are concerned about cutting future health care costs, we must look for ways to prevent those costs from occurring.”

Please help by joining the Congressional Down Syndrome Caucus and funding the research.


…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

Why Doesn’t She Just…?

Jan 25, 2009 Author: Kyron | Filed under: Inspiration

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

finger point Why Doesnt She Just...?

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?

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.

American Idol 2009

Jan 13, 2009 Author: Kyron | Filed under: Inspiration, Television

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!

Katherine Update…

Jan 13, 2009 Author: Kyron | Filed under: General

Just felt so wonderful about how many of you either posted or emailed me about the G-Tube and I really appreciate all the kind words of hope and support. Katherine returned to school this morning – a bit sore but over all doing well. The feedings so far seem to be going pretty well. The eating? Well we’re working on that icon smile Katherine Update... So far…..so good!

How did we get here?

Jan 8, 2009 Author: Kyron | Filed under: Medical, Strategies

Katherine’s pancreatitis continues to have long reaching complications. Not only has her way of life had to change, not only has her look changed from the drastic weight loss she has encountered, but her look is about to take yet another turn. Her GI who I love is telling us that Katherine needs a G-Tube (which is frequently known as a feeding tube. This is happening tomorrow. While we are still waiting for some details, her dad’s flying down tonight and this thing is happening tomorrow…which is of course where the problem comes in. How come my usual solid footing is so freaking weak this time.

I guess overall I’m certain we are doing the right thing. It is just that some people I trust spoke out against it and I guess it shook my confidence.  I guess that it is to be expected. Not everyone is going to be on board with an invasive procedure – no matter what it is. I think that most parents have that problem to some degree. You want to be so certain you are doing the right thing you rehash the whole thing in your mind over and over until you eat your gut in the process. Sometimes it’s particularly hard because you are weighing (like I am) the variety of issues that your child has going on and how this one issue (in my case, Katherine losing so much weight) is impacting all these various issues.

Where I have come down is that no matter how much I value and trust the voices of dissent on this, the people who I trust most – me, her GI and cardiologist and my family -  Joan, dad, his wife Mary and my husband have all supported me in this decision. I have a further network of friends and family who have also encouraged me to just think it out logically – actually making a list of reasons why I think I should do this and why not – and it’s really helped. Sounds like something I might have done to make a decision about who to go to prom with in High School (although that wasn’t ever an issue! LOL)

Hopefully this is as temporary as we plan it to be and that it gives Katherine an additional tool to gain weight, to increase her appetite and allow her to gain her strength back and then maintain it on her own so that this will be a brief blip in Katherine’s history.

Do any of you second guess yourself on all the decisions that have to be made for your kids? How do you go about making these decisions? Do any of you have kids with a G-Tube? Any advice you’d give me on care, feeding, anything I should know? Please feel free to share! icon smile How did we get here?

Not a Happy New Year

Jan 3, 2009 Author: Kyron | Filed under: General, News

New Year is a time when people are celebrating new beginnings, making resolutions and looking forward to travolta Not a Happy New Yearthe year that is coming. It is probably in this vein that the John Travolta/Kelly Preston family went to the Bahamas with family and friends this weekend. Which makes Friday’s events so devastatingly tragic. travolta Not a Happy New YearParents should just never outlive their children. While there is no certainty to the cause there is a lot of talk about Kawasaki’s Syndrome (KS) which Jett had as a child. But there is also talk of Jett having a seizure in the shower and then being there for some time before being found. Of course it’s new and the details are incomplete. Apparently there is even a rumor that Jett was autistic but this has been denied by John Travolta (it should be noted that scientology, the religion practiced by the Travolta’s, does not recognize autism as a disorder).

All the speculation can be done by someone else at some other time. I think at a time like this we’re all special parents – because no matter what all our children are special. Jett Travolta is only a bit younger than my daughter Katherine. My daughter is sleeping, breathing in her bed tonight. Her younger brother is in the next room letting out some very cute baby noises while he sleeps.  Jett is not with his family. It is not natural, not normal, it’s not even fathomable.

I’m not a big “resolution” person per se…mostly because I used to have all these good intentions – but my follow-thru was fairly lacking…like many people icon smile Not a Happy New Year My new years tends towards reflection rather than idol promises that I’ll inevitably bail on 2 weeks in. I had already had some thoughts about this past year. It was a rough one on so very many levels. Katherine’s bouts of pancreatitis, her behaviors, my own struggles with RSD – I wasn’t going to be weeping as 2008 left. Because of this I felt like I had lost some of the joy of my kids. No – I’m not meaning the rosy Carol Brady “I never cook, have a maid and my children are beautiful and annoyingly perfect in every way” kind of joy. I am talking about that every day joy of savoring your kids victories, the simple observations they can make which just make you belly laugh – unless you are too caught up in being overwhelmed in the every day. And then a news report like this catches me like an avalanche in snow country.

For the Travoltas there is an abyss they must struggle to pull themselves out for the sake of their other child, Ella, who will also be struggling to cope with the loss of her big brother. For the rest of us watching the news on this it could be a blip on the screen, a moment of silence as a fellow parent for those whose suffering that you can only imagine. I would emplore you to make it one more thing. I would ask you make it the impetus for taking time each and every day – even if it is only a few minutes to savor your children.

We all spend time with our kids each day – we feed them, clothe them, bathe them, get them to and from school, doctors, therapists etc. This isn’t the part I am talking about. I’m talking about making sure at each point you try to get to their level, to watch the world with the wonder your child has for it. To truly LISTEN to what they have to say – no matter how mundane you may think it will be. Sometimes its so crazy busy we get into a rote pattern with what has to be done – eating, bathing, for some of us medications, therapies and that’s only their stuff! Its times like this where some high profile individual loses a child that we need to make very sure that that death was not in vein. I think one of the best ways to honor the life of that child is to make sure that your child benefits from it. Let them benefit by having some truly special time each and every day with you.

Each day is precious and you never know when it will be the last one. Don’t make it a time of regret for all that could have been…take today to make memories that last a lifetime, and beyond.

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