We have moved to Alpine, TX… almost to the end of the known world… and away from our Amazing Amigos…

Becky is actually taking it in stride!  She is proud of her new status as a Texan!  She takes being a cowgirl seriously, and she is workin hard to rope a cowboy!

Alpine Amazing Amigo Christmas Party

We have found 4 other people with Down syndrome in Alpine, but unfortunately, they are all younger and she is not too interested.  We did start the Big Bend Down Syndrome Association, and had our first Buddy Walk last October!  We have also started an Amazing Amigos group, which is a social group for young adults with disabilities.  So far, we have had a successful Christmas party, and we are planning a Valentines party.

Since we moved, Becky has taken her art work to a new level.  Her aunt, who is an artist, has encouraged her (and me) to take her drawing more seriously.  Last November, she had her first art showing at the Alpine Art Walk and sold 23 drawings!  Since then, we have decided to open an art studio for people with disabilities.

Becky got a grant for new businesses from the Department of Rehabilitation for her new business called “Livin’ My Dreams”.  Not only will she create and sell her art, but she will also sell her Isagenix bars and drinks.  She hopes to be a health coach. Public speaking has always been part of her “Dream”, so we will also be promoting her as a Self Advocate Speaker.

Last year, we applied to the TX Commission for Consumer Direction to be in their workgroup.  This last week, I got a denial letter, but Becky was asked to serve!  So, we head to Austin in 2 weeks for orientation.  She is very excited to help the state of TX develop an awesome Self-Direction program.

So, despite the lack of a well-developed social life,  Becky is doing well in the great state of Texas!

From another caring parent

The enclosed is from another parent of a child with a disability, who is only 2.  It is a well written expression of what some new parents experience.

Enjoy!

Amsterdam International

To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.

In the special needs world, there is a poem (essay? whatever.) called “Welcome to Holland.” It is supposed to explain what it’s like to have a child with special needs. It’s short and sweet.

It skips everything.

While “Welcome to Holland” has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written “Welcome to Holland”, I would have included the terrible entry time. And it would sound like this:

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything—you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization—your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up—you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious—how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010
http://niederfamily.blogspot.com/2010/10/amsterdam-international.html

And also from Dana:

Please feel free to forward this, blog about it, post it places, etc. My intent in writing it was to reach families in the early stages of processing having a child with special needs and to let them know that they are not alone. If you do blog about it, post it on a website, forward it, etc, please link back to this blog (or cite my name, Dana Nieder) and include my email address (uncommonfeedback@gmail.com) so that I could be contacted if anyone wants to reach out.

Also, if you blog about it or post to a website, please email me to let me know, because I think that’s pretty cool

Thanks for reading

Ok, so do you want an update on Becky’s guy friends?? I thought so…

TVDSA Cool Club High School Group

She is such a crack up.  It is so fun to watch her grow.  She is adjusting (if you will) to the attention from her “guy” friends.  She has about 5 guys who she would consider her … friends / dates.  As she has grown into being a little boy crazy, she is also starting to call boys “cute” which used to be a word that we only used for babies…

There are the two guys from her recent trip to Florida and the Bahamas who live in the mid-west and the East coast (Thank the Lord).  Most of the time, she talks about these two more than the others.   One calls almost daily and sends gifts!  The other is so busy that they only talk every week or so via Skype.  She writes letters via snail mail, and calls both of them.

Then there are the guys here in her local groups.  Yesterday, she had lunch with her good buddy who is blind with his family, and dinner with another old friend and his family.  Having grown up with Becky, this boy, who is much younger, loves being with her.  He has recently started hanging out with the group of young adults with disabilities and has found his nitch.  Homeschooled like us, he is not used to other kids with disabilities and is now enjoying his time with our group. Being younger does not really seemed to bother Becky at this point because she just likes the attention.  All in all, a good day in her mind – two dates in one day!  Her friend from prom only lives an hour away, but we do not seem to hook up too often.  It’s too bad, cuz I think he and his brother are cute!

This whole process has been a great learning experience!  My mother warned me that it would take work, and it has… but it is worth it!  What parent ever wants to deal with boy crazy? Feels like jr high school! For us, this stage, just like every other stage Becky has gone through has been a learning process.  Like every other stage, she did not automatically go thru it.  But, as she goes through it, learning each step, we watch, thrilled that she continues to grow and mature.

More Alike than Different

by Abby Page

Down syndrome is a chromosome disorder that affects both intellectual and physical aspects of the individual who has it.  My sister has Down syndrome and I believe that having her in my life has affected me in huge ways and changed me into a better person. Many people through out time and sometimes today have tried to put kids with Down syndrome in a box.

An important aspect of this medical condition is that it varies in its effects and should not be limited to a textbook definition.

Down syndrome, a chromosome disorder, has three different types of affecting an individual’s chromosomes.  In all cases it occurs before a baby is born and usually happens at the very beginning of a baby developing.  The first and most common way that Down syndrome occurs is called Nondisjunction Trisomy 21. (Approximately 95% of individuals with Down syndrome have this type.) Mosaicism Down syndrome is a separate but related category of Down syndrome. Translocation Down syndrome is the third type of Down syndrome. Each type of Down syndrome is unique and varies from person to person.

Many babies born with Down syndrome have complications. They have a higher rate of heart problems then usual (about 40%) Babies born with Down syndrome also commonly have difficulties with their digestive systems. The tubes and passageways of individuals with Down syndrome are a significant degree smaller than usual, which can affect them for the rest of their lives in many ways, but again varies to each individual.  Most babies diagnosed with the medical condition Down syndrome have type Nondisjunction Trisomy twenty-one. This type of variation in chromosomes is such that the babies born with this condition have an extra copy of chromosome twenty-one in every cell in their body.

Mosaic Down syndrome is a type of Down syndrome in which only some of the cells in the individual’s body have an extra copy of chromosome twenty-one. This variation of Down syndrome is not predicable, and varies from person to person.

The last, and most rare type of Down syndrome is called Translocation Down Syndrome and affects only certain parts of different chromosomes. This type of Down syndrome is the only kind, which is hereditary, meaning other siblings are carriers of this specific kind of disorder.

Individuals who have Down syndrome have characteristics that are easy to recognize.  Their features, more specifically their nose, ears and mouth are quite a bit smaller than people without Down syndrome. They also have a shorter bone structure, you can see the evidence of this on the palm of their hands, on which you will find not only that there fingers are small and cute but they only have one crease instead of two running horizontally across their palms.  Their eyes can be almond shaped and have pretty lighter marks in the colored part of their eyes.

No matter what part of the world you are in, your ethnic background, or your status in society, you can always see beautiful babies, boys and girls, men and women who have Down syndrome, but have the same potential and capacity to excel, grow, learn and love as any other person who does not have that one extra chromosome.

It is exceedingly important for parents and providers of children born with Down syndrome to begin early intervention soon so their child is as healthy and successful as possible. Little babies with Down syndrome have lower sensitivity to their surroundings.   If you see young children with Down syndrome making efforts to sit up, crawl etc. you will notice that their there muscle tone is hypotonic, and they are very naturally hyper flexible. Working with kids who have Down syndrome on strengthening and toning their muscles early, is greatly effective on improving balance and over all health for them.

There are also varying intellectual disabilities among people who have this chromosome disorder.  Most people with Down syndrome take a longer time to learn things but that doesn’t mean they can’t learn just like everyone else. Learning methods definitely tend to be more effective when they are patient, hands on, and formatted to the individual being taught.

Many parents and therapists have found that sign language is an effective way to begin communication and aid in development. (lack of muscle tone affects their facial muscles as well) Speech therapy is very effective on helping young kids learn how to talk and communicate clearly and effectively.

Dr. John Langdon Down is who this chromosome disorder is named after, he was a British physician who devoted a lot of time and effort to research and record his findings on individuals with this condition.  He wrote about this condition in 1866, and was the first person to ever spend a lot of time writing similarities and different conditions of Down syndrome.

Alzheimer’s diagnoses among individuals with Down syndrome are exceedingly common and the symptoms often progress farther in shorter periods of time. Without constant stimulation, and efforts toward development, loveable individuals with Down syndrome can decline in function and become depressed and lethargic.

Down syndrome is a permanent medical condition that is simply the chromosomes of an individual’s body having a few extra ingredients. My sister thinks she is like a cake that has extra sugar, “ I am just sweeter, and more sugar is better anyways…” People who have Down syndrome are notorious for their sweet fun spirit, and love for music and dancing!

This medical condition is everywhere, no matter what part of the world or cultural background people have, inspiring babies, children and adults with Down syndrome will be there, nobody can get away from it! Join the party!  Today, right now, people need to look at other people with this medical condition, as beautifully spirited individuals first and as the National Down Syndrome Congress so appropriately put,  “They are more alike than different!”

Works cited:

Stray-Gunderson K. (1995) Babies with Down Syndrome-a new parents guide (2^nd edition) Bethesda, MD: Woodbine House, Inc.