"She has run of the mill Down syndrome"

Ah, I was reading a blog about how they found out their precious daughter had Down syndrome, and I remember how the news was delivered to me.

It's out of the ordinary; but Meghan was almost 2 months old before we finally got her karyotype test. She was not one of those babies who looked typical and parents find out when development lags that they have Down syndrome. She looked like a baby with Down syndrome. She was beautiful, gorgeous eyes with Brushfield spots that made them sparkle like diamonds, and the prettiest soft skin.

I can't remember why we finally did it, odd, insurance is likely, so much was happening at the time, whatever the reason was, she did not get the blood test for a while.

I have to admit that there were times I was hoping they would tell me "Well, we made a mistake, it is not Ds at all", I suppose most of us do wish that, life is so hard, growing up can be really hard for kids, even if their only difference is a stutter or needing glasses, so of course we want our kids to have less reasons to be picked on by others...it concerned us because we always wanted Meghan fully included in school from her birth (but that is another story for another day).

On the day of the blood test I was uneasy, Julia was with us, she had just told off some interns (she's not a lab rat you know), she has always been a girl who knew her mind in that respect, and we had finally asked about blood tests, everyone was shocked, what do you mean? The hospital does those at birth...except Meghan was born in a birthing center with midwives, not in a hospital, so that was yet another routine test or discussion that fell through the cracks.

We navigated a confusing basement area to find the lab to draw Meghan's blood; it had to be a special lab, one for genetic testing only. My heart was thumping, when Eric, our third born developed life threatening jaundice from ABO incompatibility, and he had to be hospitalized 3 days after his birth. I will never forget his painful cries as they attempted to get an IV into his tiny body, coming out to tell me they were thinking of doing a surgery to reopen his umbilical artery and putting it in there, it ended up in his leg... They made me stay outside of the room and I was only able to comfort him after they were done, I was livid with them for forcing me out; 3 days postpartum and majorly hormonal, I stood against the wall in tears, sobbing. As a result of that experience, we knew getting blood from Meghan was going to be tough. It is traumatic to see them repeatedly try to get into the vein of an infant, I always feel like I will pass out. That is probably why they made me wait outside for Eric…who wants mommy fainting?

After a lot of struggle, they got enough blood and wrapped Meghan's arm up in elastic band and we went back to the examination room to put her clothes back on. Julia turned white and said "Why is her arm purple mom?" Sure enough the elastic had cut off the flow of blood to her lower arm; we quickly removed the too tight elastic from her little arm and watched it regain a normal appearance. It scared Julia, she still remembers that day, but she finally understood why mommy was always so sad after Meghan saw the doctor. They seemed more careless with Meghan than our other 5 children, or maybe we were more sensitive?

A month passed, and I remember being asked what the genetic tests had found and saying; "Hmm, I don't know, no one ever mentioned if they got the results". So I called the pediatricians office and the nurse said they had been there for weeks, but she was not allowed to report the results to me, even though she knew what they said, that a pediatrician would call me with them.

A few hours later a harried sounding doctor called and said, oh yes, here are the results "You daughter has run of the mill Down syndrome". I thanked him and hung up. Well, no surprises there, but an ever so slight disappointment in the back of my mind, “So it is true”.

I told another mom what the doctor had said, not really thinking about it, and she was aghast, how flippant of that doctor to say it in such a way, I guess I was used to them being insensitive, I had not given it much thought until I saw her reaction.

So Meghan has run of the mill Down syndrome, so do Kara and Amanda. I am certain their moms did not think it was so run of the mill when they heard the news either. 90% of babies born with Down syndrome have Trisomy 21; the other types, mosaic and translocation are much rarer.

Hmmm, run of the mill Down syndrome? What does a child look like who has run of the mill Down syndrome?

When Meghan was younger, I spent a lot of time checking off her Ds characteristics, she has the palmar crease on one hand, not the other, her nose looked like mine but she has a flat facial profile, but so did I as a child...her almond shaped eyes are just like mine too, but she had epicanthal folds, did I, who knows? Her skull is smaller than average, so is mine. She had thick thumbs and shorter fingers, but skinny feet. Her arms and legs are slightly shorter than average. She has stick em out ears, no little folds along the tops. She also had moderate hypotonia and loose joints. Stabisimus which eventually required corrective surgery, and is becoming slightly near-sighted. She also had a heart defect; also minor compared to other children’s, major to us. When you think about it, all those things are pretty minor, except that to us, who never has a child with any major health issues, they were not.

I will never forget the way I felt when a mom who was working with our family to help us adjust to our news said "Oh, your daughter is high functioning" and there was a bit and sorrow and jealousy there. High functioning compared to what? It was the first time I heard those words in relationship to a child. Her daughter was born with lots of medical issues including cataracts which made her legally blind, I suppose to her, any child without vision issues would be "higher functioning" than her daughter. Her daughter also had trisomy 21.

I had 15 close friends who had babies around Meghan's age, a blessing at a time when so much was new. One of those sweet girls had epilepsy, and trisomy 21. Another little guy had Tetrology of Fallot and AV Canal, he was also very ill post surgery and had many other health issues following it. He also has trisomy 21.

Just as a side note, there were only two of us in that group who were older moms, the rest were younger than 35, one was 18.

When we adopted Kara it was plain that she had the curved pinkie finger, no palmar creases, but the little fold on her lower set ears. It was not until I took her from the orphanage on Gotcha day that I saw that she had webbed toes, her 2nd to her 3rd, and her 3rd and her 4th, she also has a huge space between her big toe and the rest, and short, flat, wide feet. Kara also has extremely low tone and very loose joints. She has trunk weakness and shoulder girdle weakness and tends to gain weight easily. Kara has nystagmus and strabismus, but has normal functional vision. It was reported to us in Ukraine that she had "wild eyes" and we quickly learned they were referring to the rapid movement of her eyes when she was tired. When we picked up Kara her facilitator kept telling me she did not look like a “Down syndrome baby”. For Kara the “look” was transient when she was three, but more obvious now.

Amanda Moo? We have a couple of pictures of her from adoption websites, she always looked like an infant with Down syndrome too, in one she looks grumpy LOL, the other disinterested. I wondered about autism and her pupil size when I saw her picture the first time. She has some other issues not associated with Down syndrome; positional plagiocephaly, not certain if it was from the womb, or from being left in a crib too long, a partial expression of Aniridia, one in 80,000 people have this condition, varying from partial to full (no iris, just the black of the pupil) interesting that most people with aniridia are nearsighted, but Amanda is far sighted. She also has minor strabismus. Amanda has a persistent left superior vena cava, only 2% to 4.5% of the population have dual superior venae cavae. Amanda is just unique! Oh, and she also has run of the mill Down syndrome, and autism....

31 for 21-day 23-Our Buddy Walk ;o(

Goodness, we got there so late because none of the girls were really gung ho about leaving home today, we missed the walking part entirely and spent the time there just chatting with really nice folks. Honestly, I love to chat, but the day was about my children, not me, and I did not feel much of a celebration going on, maybe because I missed the walk part?


Pictures I took of the girls before we left, you can see how they felt about going.

I think that folks planning the Buddy Walk need to find their inner child, because looking at from a child's POV, it was not very magical, and from a teens, maybe a bit more interesting, they had a band. I cannot tell you what the adults felt, but even they seemed blase' about the "party to celebrate them"..

That is all I have to say about this, probably said too much already, it was just OK, which is sad, because it should be AMAZING.

31 for 21- The Da Vinci Players

Our son Brian is an actor, for a few years he has been associated with a local theater group; "The Da Vinci Players" from Studio Connections.

Last weekend we took the little girls to see "Man of La Mancha" and as always, were impressed with all the actors, the show was wonderful. Got a great review and of course proud mom loved seeing her sons name :

From the review:
Around these three principals are arrayed the "sane" people of the world: the well-meaning innkeeper (Todd Luethjohann), a spineless priest (Rob Roberts), the cynical Dr. Carrasco (Brian Levario) and Quixote's calculating niece (Julia Higgins). Encila has chosen his cast well, and each of these performers shines.

It was difficult getting up the energy to go, we had a long week, a funeral that broke our hearts, audiology appointments for all three girls, ugh, three hours in a small office with three active girls...and a choral concert, and our schedule was a little off, which in turn throws off the girls behavior as well. Now normally we take the girls to a play and they watch happily, clap when the acts are over and are the best audience members, except this time the audience was, well, grumpier than normal and the girls were exhausted from a crazy week too.

Kara was wiggly at the play, Amanda decided that she should sing a long with the cast. We got those backward glances from people when they made a noise, all older folks...60-70. At one point after Tom and I switched kids on laps, Kara began to do the slide, are you familiar with the slide? When your child seemingly loses their bones and oozes repeatedly to the floor from your lap in a puddle then quickly regains their use so they can run around. Meghan did the slide on the way to Ukraine, but she was half asleep and just wanted to lie on the floor and sleep. Amanda began singing with the cast very loudly, she purely loves music and is moved to join, this is just plain truth! I could not get her to stop, and did not want to ruin the play for others, so I got up to take her to Tom, who already exited to keep Kara happy. As I was trying to climb down a very steep step, a woman in the back placed her finger to her lips, scowled at us and said SHHHH. She turn her head indignantly as I left, oh it irked me. To be clear, we have always removed our children if they are disrupting a movie, play, musical performance, but we find some people less tolerant of our girls because they have Down syndrome, and you can always tell who these people are, our girls make them visibly uncomfortable.

Tom decided to take both girls to the van, and I stayed and watched the first act with Meghan, she was a perfectly happy girl, watching the show and loving one on one time with mommy. She kept snuggling with me and kissing my cheek, we need to get out more, just she and I. Except my thoughts turning to Tom missing the show. We have never had to remove the girls from one of Studio Connections plays before. The audience has always been very sweet to us, and understanding of the girls too.

At intermission Meghan and I went out to the van to find Tom sitting in the open sliding door, Amanda playing in the back seat and Kara eating. (Kara is always eating). He said he was perfectly OK being out there and I should enjoy the show without him, he was going for a drive with Kara and Amanda. I love him for not being mad about leaving, I missed having him there. He said, he wanted to tell that woman, "Of course Amanda wanted to sing, she is Estonian after all". I was still perturbed at the woman who rudely shushed us. I dislike people acting in a bad way and excusing themselves because they feel you messed something up for them. That righteous justification...maybe she was from New York? (family joke)

Meghan and I returned to our seat for the second act and the woman sitting next to us asked where Kara and Amanda were. I told her people were getting annoyed with them, especially the woman who got vocal about it. She said "F*** her, yes, my mouth was agape too, your girls had the right to watch the play too, and they were just enjoying themselves, and what a shame people had to act so rudely". Have to love it when people say what they think.

We watched the rest of the play, met the cast, and found our son, we told him we were sorry about his sisters, he said it was fine, they were fine.

The next day Brain and I talked about the show, I told him about the people who were annoyed and how we were afraid his sisters would ruin the play or cause a scene, which is why we removed them. He said he told the entire cast his sisters were coming, and if they heard slightly off key singing coming from the audience, it was likely them. They had been waiting to hear something, when Amanda joined in, someone asked "What is that" and Brian said, "my sister", and everyone smiled. He said they were all OK with the girls too.

Studio Connections has always been a comfortable and safe place for us to take our girls because everyone has always been understanding if they get excited or Meghan says hi to her brother while he is on stage...we have always felt accepted there and it gave us a chance to do something as a family. So it makes me sad that as Studio Connections gains more recognition and more people attend the plays, some of those people will not be as accepting of my three little gals as the previous audiences were.

Studio Connections is moving to a bigger theater after this show, they have outgrown this one which is fabulous for them, they are successful! However I am rather sad too, it means it may become one less place I can take my three sometimes loud, sometimes unruly children, a place where they are completely accepted. I am realizing that there are not many places where they are, and it makes me angry and sad.

Hopefully my girls will outgrow this phase soon...they had always been better behaved (not perfect) before.

"Why didn't we leave the girls with a babysitter?" everyone asks us this when they see the girls with us. They never take their kids to adult performances, they stay home with grandma. My children have one grandmother and she does not live here, and if she did, she is not up to caring for them, she has too many mobility issues. We tend to not ask immediate family to take care of their sisters, they have their own days planned, babysitting is not usually on their lists. If they volunteer, great, if not, oh well. What about their respite worker? He is Brian, who was in the play.

We want the girls to be able to enjoy theater too, and "Man of La Mancha" was a musical, which they love the best. For some of the more serious plays, we do try to find someone to take care of the girls, but our options are severely limited, honestly, we usually miss those plays completely. However we want the girls to understand what it means to be a respectful audience members.

31 for 21-lots of pictures

Meghan loves putting together interesting outfits!

Self expression is a good thing!

What, you have a camera? Let me jump on you.

Oh yes, there is mama wanting me to smile again...

Mom, my picture too, whoops, turned my head.

Pretty Kara, her 6th birthday is coming up fast.

Amanda and her baby doll, she is learning to play with all the toys now, yay!!

Kara is not a tiny girl, look at those hands holding her favorite dolly.

Meghan in the car she barely fits into!

Amanda and Smudge the cat had a disagreement, and Smudge won. Maybe Amanda should stop assaulting Smudge? Did she learn her lesson yet? No.

Now that is a tongue! Kara saying Blah blah blah.

The little girl look is beginning to leave Meghan's face,

ahhh,

am I ready for her to be a young woman yet?

Yep, Amanda is standing, she walks around a lot, but still scoots too.

Love those brown eyes! pretty Kara!


A video of Amanda playing peek-a-boo with mom.

31 for 21

31 for 21- Funny girl

Pilate's anyone?

Amanda does this hundreds of times a day, her new PT was talking bout core strength and I told her, that is one thing Amanda does have!

31 for 21- day 15--About Down Syndrome

http://www.about-down-syndrome.com/index.html lots of links to follow

I found this poem again, I have it listed with Meghan's birth story:

Special Angel

(Down Syndrome Birth) by Sandy Eakle

As beautiful angels wings were
flying over the streets of gold,
the baby angels could only watch
since they weren't very old.

Then one day God stopped to talk
to a little one without wings,
just listen to the angels sing".

Confused yet excited the little
one said to the Lord,
"But I'm different from the others God
and not a miracle to behold".

"Oh, but yes you are," He said
with a hug and smile on his face.
"You're the greatest gift I can give
and a loving home you will grace".

You mean, tho I'm different
and will never be beautiful or smart
Someone will want me and give
me a place in their heart?"

"Gee God.....that person must be
special to be glad to have me,
Cause most folks would frown
and upset they would be."

God said, "your little heart was filled
with more love than most.
Cause I knew this family would love you
and hold you real close.

So go my little angel and take
the greatest gift I can bestow.
You're that "special" angel few people
have the honor to know."


I do think it is a nice poem except for two things; it says:


"But I'm different from the others God, and not a miracle to behold"


I am sorry, perhaps different, slightly, but my girls are miracles to behold. So many fetuses are so fragile, they do not make it to term, many are terminated by their parents before they have a chance to take their first breath, many have severe heart defects, intestinal blockages, and health issues that can take their lives way too soon. So my three healthy (thank goodness, thank you HF) girls are a miracle to behold. All children are miracles in my mind and heart.


and this:


"You mean, tho I'm different and will never be beautiful or smart"

Truly, all my children were special and precious to me, I loved them as soon as I felt them move for the first time while carrying them, and I thought my babies were better looking than any I have ever seen before! ALL of them, but Meghan was ethereal, she seemed to have a special inner glow that made her radiant. She was beautiful, she still is, and Kara and Amanda are also gorgeous little girls, from the inside out.

As far as intelligence goes, I do not believe that an IQ test can adequately test how smart my three youngest are. We test them according to our criteria, would we pass theirs? They are bright, inquisitive, and smart, it just takes them longer to learn.

Not everyone will be a Rhodes scholar, I certainly am not. Though my girls sure fit the criteria:

Rhodes' legacy specified four standards by which applicants were to be judged:

literary and scholastic attainments; (Very few people work harder to achieve academic success than people with Down syndrome, do they understand string theory...no)

energy to use one's talents to the full, as exemplified by fondness for and success in sports; (Ever seen Special Olympics?)

truth, courage, devotion to duty, sympathy for and protection of the weak, kindliness, unselfishness and fellowship; (Even more so than most typical people I know)

moral force of character and instincts to lead, and to take an interest in one's fellow beings. (Again, most people with Trisomy 21 have love as their guiding force)

If you want some insight into the struggles of people with Ds living in our super speed world (when their moves slower), read this book, I read it when Meghan was a baby:
http://www.amazon.com/Count-Us-Growing-Down-Syndrome/dp/015622660X

I love, adore, admire and respect all of my children. When you have a child with Down syndrome; you learn that they have a determination that most people envy, they try and try until they get it. What is more, they usually accomplish what they set out to do (Where there is a will, there is a way). They should be an example to today's youth who seem to give up faster than any other generation I know.

31 for 21-day 14-About Meghan, Kara and Amanda

We had a busy and emotional week, the girls speech therapist called and said she could not make it today and I was secretly grateful, I am exhausted. My dear friend called and wanted to stop by today and I asked her not to. Though I really would love to see her, not this week though, I am poor company.

We attended Renee's funeral and the church was full of people who loved her. My mind kept going to pre-natal diagnosis and how many children were not born, many because of Down syndrome, many because of cystic fibrosis, Renee had both. Yet there with her grieving family were hundreds of people who loved Renee, people whose lives she touched and changed forever.

She was an ambassador for good will, love, and actually the hospital she spent too much of her young life in.

She was not the least among us, but a light in the dark, as many of our precious children are. I see her beautiful face and I think LOVE. What a legacy she has left us.

My own beautiful girls do this in their own ways too.

Meghan is our sweet and funny sweetheart. She also has a stubborn streak that no one can change. She comes by it naturally, her dad and I are also stubborn, or as my dad said, hardheaded. Mom used to tell him, "But she has a tender heart" and so does my Meghan. Meghan loves to shop, and she is gaining self-control and independence in stores for the most part. She sometimes gives her daddy a hard time. We shop for groceries at Trader Joe's for the most part, we need chemical free food, gluten free, and such, and they have more of a section at better deals. Trader Joe's is the only store where everyone is kind, understanding and supportive of our family. Another reason why we love it there. (not that I think everyone needs to shop there, it is too already too small and crowded *wink*)

We have been going to Trader Joe's since I finished chemotherapy and discovered I could no longer tolerate-or digest dairy, wheat, or anything artificial in my food. Meghan was 2 1/2 at that time.

Meghan knows where everything is at that store and she knows what we buy. She will move through that crowded store and get everything we need on her own. Everyone knows her there too, and they just treat her like any other kid. They of course notice she sports that extra chromosome, in fact, one of the cashiers asked us to help her pass an early childhood development class and she interviewed me about all three girls. Hope she got a good grade!

What I appreciate about that entire group of people working there is simply that they see my girls as children, complete, whole and they have never treated them like some people have.

Target can be bad, it is too big, too many people work there, always someone different checking you out. Amanda is not a fan of Target, when she gets nervous she will hide her face, play with her fingers,, or resort to her self stim behaviors she used at the orphanage. When she sounds like Darth Vader, we know she is overwhelmed. Thankfully that is becoming more rare. She loves grocery shopping though, Tom sometimes takes each girl individually and you can hear her singing when he inevitably calls me asking "What do we need again?"

How about Kara, well, Kara seems to think that picking up things off shelves and tossing them is the best and more fun thing ever! She is at the stage where everything needs to be touched and held, including apples, and other fruit, whoops, and the hand really is quicker than the eye. Kara has a nonchalant attitude about life, she enjoys interacting with people, if they take the time to engage her, but otherwise, forget about it. She has this very cute way of engaging me when she wants a hug. She tilts her head ever so slightly to the right and then jumps on me giggling. She has to be the best cuddle bug ever, and as we say "She is so squish-able".

Kara has been struggling with expressive language, that attitude of, yea, so what, who cares, does not help. She reminds me of a teenage boy...ever had one, then you know what I mean. It occurred to her speech therapist and I that Kara was not communicating because she lost language completely. Except lately she has been signing more words, vocalizing and trying to approximate sounds, she played the ba ba ba matching sound game with me for 20 minutes. Here's hoping we don't to the "two steps forward, three back".

Oh Amanda, we are all joking that every step she takes walking makes her stinker gene kick in more. Lately she has taken to screaming, LOUDLY, sounds like someone is killing her, but she is rocking on her doggie, calm as can be, she is just learning a new sound, heaven help us.

It is fun to watch her walking around, she looks like an 18 month old, and she toddles like an infant! She is growing very slowly, Meghan also grew slowly, Kara is the only one of our three that does not have any issues with gaining weight!

31 for21-Welcome to Holland-revisted

This first poem was sent to me yesterday and I am passing it on. You can read her blog here:
http://niederfamily.blogspot.com/2010/10/amsterdam-international.html

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.

Of course I had to include the original:


Welcome To Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It’s just a different place.

It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.* * *

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

And one more, for Amanda-who has her own struggles with Autism:

WELCOME TO BEIRUT by Susan F. Rzucidlo (Beginner's Guide to Autism)

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel.

It's like this.." There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor.

Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound.

Your child regresses for no apparent reason, and it feels like a kick in the stomach.

Some bully makes fun of your kid and your heart aches.

You're excluded from activities and functions because of your child and you cry.

Your other children are embarrassed to be around your disabled child and you sigh.

You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up.

Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen.

You're exhausted because your child doesn't sleep.

And yet, hope springs eternal. Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along.
Your child will make progress.

When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar.

You will know that you have experienced a miracle and you will rejoice.

The smallest improvement will look like a huge leap to you.

You will marvel at typical development and realize how amazing it is.

You will know sorrow like few others and yet you will know joy above joy.

You will meet dirty faced angels on playgrounds who are kind to your child without being told to be.

There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others.

Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times.

For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place. But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.

Just too sad to post

There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love. --Washington Irving


Renee's was laid to rest today, her service was beautiful, many tears were shed.

Goodbye sweet angel.

31 for 21-Day 11- Down syndrome and preconceptions of the medical community

When Meghan was born, the pediatrician we saw gave us bad advice, he was bigoted towards our daughter, and we were horrified by him suggesting we just leave our newborn baby there and walk away from her. We thought it was an isolated incident, but we learned in the 9 years since that we were not alone in getting outdated and bigoted advice.



When Meghan was a baby, I poured over the Internet looking for articles about Down syndrome, not many were encouraging. truly, the more I read, the sadder I got, my heavens, was life really so bleak with a child with Ds?



A few months after we brought Amanda home in 2008, we learned George Bush signed a bill into law that all of us in the Down syndrome community hoped would save the lives of prenatally diagnosed infants. However our excitement was short lived. A pharmaceutical company had concurrently developed a test for Down syndrome that could diagnose it (and other genetic disorders) in early pregnancy. There is only one reason for this test, to give the parents the chance to abort an early pregnancy as opposed to a 5 month pregnancy. I am positive the researchers were not hoping to give parents more time to prepare for a baby born with Down syndrome, I believe they developed this test so parents would abort the so-called defective fetus.



I have spent more time looking up articles, so yes, a depressing subject for some, sorry, you can stop reading now. I think the information needs to be shared. I have color coded each quote that goes with it's respective URL. The quotes are from those texts, and not written by me. If you wish to read the articles or studies, click on the links. All my own words are written in black.



This is an older article, and therefor the idiom is from that time, however, this is an important subject, do people with Down syndrome and other groups with cognitive delays get substandard care, and do doctors deny them proper care simply because of their delays?



http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594795/pdf/jnma00296-0105.pdf

(from this article above)
In 2002, the office of the U.S. surgeon general published are port detailing the discrepancies between the quality of health care afforded to persons with and without mental retardation. This article examines the case of a female resident of a developmental center with profound mental retardation due to Down syndrome and degenerative hip disease. Although she was in urgent need of a total hip replacement, the operation was denied or delayed by several different surgeons. Using a survey of physician attitudes, we examine several possible motivations behind the surgeons' reluctance to perform the procedure and conclude that these reasons were not appropriate in this case. Finally,we reiterate the surgeon generals call to eradicate preconceptions held in the medical community about the population of persons with mental retardation that result in similar failures to provide adequate care.



http://abcnews.go.com/GMA/OnCall/story?id=1207054&page=1



(from ABC news)



Negative Reaction from Doctors


In a recent survey, mothers of children with Down syndrome reported physicians are overwhelmingly negative when diagnosing fetuses and newborns with Down syndrome, often advising the mother to discontinue the pregnancy or to put the child up for adoption.



http://www.brianskotko.com/ if you want to read more about the doctor and author of the following studies.



This PDF discusses prenatal diagnosis and parents thoughts.

http://www.brianskotko.com/images/stories/Files/ajogfinalprenatalmanuscript.pdf



According to this study, a woman with a prenatal diagnosis has a more positive birth experience than a woman, like myself, who finds out after the birth of their baby. However, I have talked to many women personally who were still hurt by their OB's assumption that they would terminate their pregnancies. In fact quite a few said they had calls from their doctors asking when they wanted to schedule their abortions. A 92% abortion rate following prenatal diagnosis indicates that physicians continue to paint a bleak picture of the infants future.



This PDF discusses thoughts and feelings of mothers who learned of the children's Down syndrome diagnosis after the birth of their babies.



http://www.brianskotko.com/images/stories/Files/pediatricsmanuscriptfinalversion.pdf


“In general, what I was taught in medical school and in my training is that disability—no matter what its form—is a bad thing and to be avoided at all costs.


Lectures or seminars on DS or other genetic syndromes were geared toward the description of the abnormalities . . . that children with congenital diseases
may find their lives to be rich and valuable was hardly recognized, much less stressed,” wrote perinatologist Steven Ralston. 11



Yes, so many doctors seem to give outdated advice concerning a Down syndrome diagnosis, a few of my friends who have children with Down syndrome had very positive experiences, but they seem to be the exception.



When we had Meghan, not one doctor told us about support groups, or national Down syndrome organizations. Though they seemed thrilled to have a Down syndrome specimen for their teaching hospital, and merrily checked out all of her Down syndrome features...picture a couple trying to come to terms with their daughters diagnosis and heart issues watching 5 interns flipping their newborn on her tummy so they could look for abnormal skull shape, or neck issues, and such. They were insensitive, and we had to put a stop to their actions, and with the help of our (8 year old) Julia we did, as we have discussed before. I will never forget her admonishing them; "She is not a lab rat you know". Indeed she was not. At that point forward we denied all the tests they wanted to perform on our new daughter, none of them were for suspected issues, but instead so the interns could "practice" them on our daughter. I do not believe many of them saw her as a human being worthy of their respect. Only one, Dr Bobby, ever treated Meghan with tenderness, and maybe that is why she dislikes doctors so much now? (I have spoken about this before, obviously I have some anger issues surrounding it)



The pediatricians were not supportive of us as a family. It was not until Meghan was diagnosed with trachealmalacia that we learned about early intervention and support groups. We were in the pulmonologists office and happened upon an old friend, Susan Daniels, who served on the Southern Arizona Fitness Association board of directors with me. She saw me holding Meghan and asked who we had been in contact with concerning therapy, etc, we said NO ONE. She gave us a notebook from Pilot Parents and phone numbers for DDD. The supportive mom from Pilot Parents peer to peer support, D, guided me in those early months, she told me about The Down Syndrome Connection. Without that chance meeting at the pulmonologists, I am certain it would have been a few more months before I learned of all the support readily available in town. Our pediatrician failed us miserably. Why didn't they have the information we needed to get support from other parents, and why didn't they tell us about early intervention when Meghan was born?



(more from the above PDF)

Did the mothers who had their children with DS in 1965 report
different experiences than the mothers who had their children in
2003?


The majority of mothers thought that, when their physicians talked about DS, they neither talked about nor emphasized the positive aspects of the
condition. In contrast, approximately on half of the mothers mentioned that their physicians talked about or emphasized the negative aspects
of DS.


Some mothers reported that their physician’s explanations were insensitive or factually incorrect. A mother who had a child with DS in 2001 recalled
that, when she received the diagnosis, “The doctor then asked if we understood that this meant that she would never live on her own or hold a job. This doctor was the ‘expert.’"



And finally,
Communicating the postnatal diagnosis of Down’s
syndrome: an international call for change

http://www.brianskotko.com/images/stories/Files/italianjournalofpediatricsfinal.pdf



About half of the mothers in the United States suggested that their physicians talked about negative aspects of DS (such as, medical complications and cognitive difficulties),and some reported that their pediatricians
emphasized these aspects. The same responses could be found in Spain, but the majority of these mothers reported that their physicians did not talk about the positive aspects either, suggesting that they received little to no information at all (Tab. II).


Mothers from both countries expressed a wish that they had learned of the diagnosis as soon as their physicians suspected it 1 25. They took note of the “silence” that seemed to surround their child’s birth, sensing that their
physicians were trying to avoid telling them something.


Mothers reported that this hesitancy by physicians only contributed to mounting fear and anxiety. Many of the mothers also reported, with anger, that they were informed without their partner present and often in a
public setting.



That was how the Prenatally and Postnatally Diagnosed Conditions Awareness Act came to be signed into law 10/08/2008

http://www.govtrack.us/congress/bill.xpd?bill=s110-1810



http://www.dredf.org/InfoSheetBrownbackKennedy.pdf
What the Act Will Do :


The Act will provide more comprehensive information and support to pregnant women and new mothers whose fetus or newborn is diagnosed with Down syndrome or another condition. The Secretary of the Department of Health and Human Services is now authorized to:


Collect and disseminate evidence-based information on Down syndrome and other conditions diagnosed either through prenatal genetic testing or screening or in the 12 month period beginning at birth.


Establish a resource telephone hotline for new or expectant parents.


Expand and further develop local and national networks for peer-support, outreach and information to parents.


Establish awareness and education programs for health care providers who talk to parents about prenatal genetic testing.


Set up a national registry or network of local registries of families interested in adopting newborns with Down syndrome and other conditions.



However, while this bill was a victory for parents who support disability rights, a pharmaceutical company was celebrating:


http://www.patriciaebauer.com/2008/09/25/kennedy-brownback-3-3302/



While the bill has been making its way through Congress, the development of prenatal tests has been causing excitement among investors who say the market for accurate testing tools has multi-billion dollar potential. Just this week, the stock of Caliifornia-based Sequenom Inc. has jumped more than 30 percent on an announcement that it had conducted a successful study of a new prenatal test.


Sequenom reported that its SEQureDx test detected Down syndrome accurately in the first and second trimester of pregnancy in about 200 samples with no false positives or false negatives, matching earlier data from another 200 samples.



For many women of childbearing age, this was another test they could have to ensure they gave birth to that proverbial perfect infant. To millions of mothers who had children with Down syndrome, this was an attack on the existence of their beloved children. As I looked upon my three wonderful (and sometimes annoying and just like other children) daughters and read about this prenatal test, my heart sank.



Every time it felt like we were gaining momentum on acceptance and support of our children, the medical community announced they found more ways to kill them before they were born. They were saying my children were not worthy of life simply by applauding this new test. The ACOG was ecstatic! They supported this new test 100%, just think, no woman would ever have to suffer the birth of a Down syndrome baby again! (I used the term Down syndrome baby because this is the way the medical community describes my children)



Thankfully there was a problem with the research procedures of SEQureDx, and the release of the test was delayed:

Sequenom Reports Delay of Release of SEQureDx Trisomy 21 Test



However, they have not given up:

http://www.newsrx.com/health-alert/3422.html



"Sequenom is committed to developing the next generation of prenatal diagnostic tools that will provide physicians with the capabilities they need to noninvasively diagnose genetic disorders early in a woman's pregnancy," commented Dr. Stylli. "We believe these unique, noninvasive digital technologies have the potential to dramatically impact the prenatal diagnostic market and we look forward to advancing these innovative approaches as part of our long-term strategy to expand our prenatal diagnostics franchise."



http://www.medicaldevicestoday.com/2008/11/down-syndrome-diagnosis-sequenom-moves-closer-to-noninvasive-test.html



They are excited about profits and their research.



I wonder how many of these scientists embrace eugenics?

31 for 21-10-10-10- Living in the now

I spend so much time looking for information about Down syndrome, reading some of it incenses me, and that makes some posts long and I think overly negative. I have two unpublished posts for this challenge, both are about issues that make me angry, and I got lost writing them, I may go back and edit them when I am not emotionally raw. Maybe post later on, I don't know right now.

The one abiding truth for me and my daughters with Down syndrome is that we love each other. Sure they can get into everything, they can have behaviors that drive me bonkers, and mommy can be having a bad day and be grumpy herself, but all I have to do is sit down on the floor and 3 adorable girls are on top of me hugging me and kissing my cheek, smiling, laughing. As I sit there holding my daughters, I feel like the luckiest person on earth.

Yes my typical children loved to sit with me too when they were tiny tots, but they always had their minds on the next thing they wanted to do, they were busy, they moved fast, so with them it was "Here mom, take a hug, can I go now?" We love one another too, and I am so lucky to have them in my life, but their minds were in the future, the little gals live in the now.

This is just one of the many things I love about my little girls.

31 for 21 derailed plans

I actually have two very long posts for the blog from today and the 6th, but I cannot find the emotional energy to finish them, I may not complete the challenge. I am so sad after yesterdays news, I need time to regroup. No one should ever lose their child, not for any reason. I am heart sore for Renee's parents.

Please continue to pray for peace for the Blanchards.

31 for 21-day 9-What do you see when you look at my children?

Julia had a birthday on Thursday, and the little girls, Julia and I went shopping for her birthday presents.



We put Kara and Amanda in the big red stroller and Meghan walked along side us, she actually is doing pretty well on our shopping trips, staying close to me, coming back fast is she gets too far ahead. She does like to push her dad's buttons though, and runs off on him sometimes. (poor daddy)



We went to the mall; not my favorite place, the mall rats pushing their way through everyone, the vendors in your face from the kiosks, the rude stares. Julia wanted boots from a specific mall store, so I relented, the day was about her, not me.



She was excited to be picking out things to wear on her birthday, it is fun to shop with her. Taking the girls with us means the stroller gets caught on every display, we knock things over, and I am annoyed by the third store. Don't moms shop more than anyone else? Don't a lot of us use strollers? Why are displays placed so dang close together anyway?



So while we are maneuvering around obstacles and taking things out of Kara's hands, or getting Meghan out of a dress she wanted to try on (she likes the sparkly ones) we rarely notice other shoppers unless they stop and talk to us.



Wednesday, we did though, because they were openly glaring ( not to be confused with staring) at me and the little girls. Not everyone glared, some plainly stared or gawked, and a few asked if Kara and Amanda were twins. No one asked if I were their grandmother for once, I guess that was good. Julia and I just keep shaking our heads when people scowled at us, what is wrong with people?



I read a lot about Down syndrome in October, I read articles and then I read the comments made to the articles, and wonder why every single negative, rude, or hateful comment gets 68 thumbs up, while nice comments get 4?



The rude looks, the terrible comments, the women justifying abortion because of special needs, the surrogate mom fighting to keep the baby alive in her body because it may have Down syndrome and the parents do not want it born, trying to force her to abort because she signed a contract, and most people agree with the parents in the comment section? All of this tells me that people do not want children like mine alive and walking about them. Eugenics, so ugly, vile, and one of the worst ideas human beings have come up with.



What do I mean? Taken from Wikipedia http://en.wikipedia.org/wiki/Eugenics



Eugenics is the "applied science or the biosocial movement which advocates the use of practices aimed at improving the genetic composition of a population,"



Read more about it, I learned the word after Meghan was born, sure I heard it in sociology, especially when we discussed Hitler and Stalin...but I never had a reason to fear it. Knowing there are extremist advocates of this movement who would gladly kill my children if given the power makes my blood run cold (if I allow myself to think about it, I try not to).


Crazy Kris, come on, no one would kill your children? Is that so, there is a 92% abortion rate for women who have a prenatal diagnosis of Down syndrome, so people are exterminating children with Down syndrome by the hundreds of thousands already. They are fetuses in the 5th month, some a week away from being viable if born early on their own (sure premies have their own sets of issues too). Some were born alive after a failed abortion attempt and placed in back room to die alone. Should I stop now? Do you understand why I get upset when a woman and her children glare at me and mine? If you really delve into our society, you would not like what you see.


I read a blog today that even churches are turning kids with Down syndrome away, a church should be the one place that welcomes them without reservation. Jesus loved everyone EVERYONE, not just the cognitively average-superior, the beautiful, or the able-bodied. "Your children are disrupting our service, we need to ask you to step out". This attitude is one reason why I left church years ago. I thought it was my specific denomination, but apparently this attitude is shared by others.


So you see my girls and I walking towards you in a store do you smile and say hello? Look away as soon as you notice us and not make eye contact, turn around and walk the other way? Or stare openly and scowl? People who read my blog would likely say hello, many have children with Down syndrome too. There are also nice people out there who are very sweet to us, I am not saying everyone is unkind. It is the unkind peoples faces I remember though, they stain my soul with their ugliness.


Because it is Down Syndrome Awareness month, there are articles everywhere featuring exceptional people with Down syndrome; artists, actors, advocates, couples getting married, but there are very few about the realities of what our lives are like as families.



So we write on our blogs in hopes that someone may read what we have to say, that perhaps a glimpse into our lives may help people see how really ordinary we are, just parents like you, raising children, working, paying a mortgage.



The main obstacles we have in our lives come from those who try to block our children from being fully included in school, church, sports, and other activities. People who still prefer the "Out of sight, out of mind" scenario where my children are concerned. I feel sorry for them, their lives are closed off versions of what they could be, while they see me and my youngest children as weird or different, I see those unkind people as incomplete. I was incomplete before Meghan was placed in my arms almost 10 years ago, I never knew it, but looking back, I can plainly see it. I also have a long way to go, and I am all for learning more, life is about growth.

31 for 21 -day 8-Posting in memory of Renee

A picture I took of Renee at the 2008 Down Syndrome Connection picnic

Today the Tucson Down syndrome community and the world lost a beautiful and very sweet little girl. Renee Blanchard passed away this morning due to complications associated with her cystic fibrosis. She was only 10 years old.



Renee was a little gal with lots to say, I was always so excited that she had the verbal ability to express herself, I thought she was amazing! I loved her voice, I loved her sweet spirit, but she was also strong and knew her mind! She was special in every way.



Our hearts are broken for her parents Doug and Georgianna and her brother Ryan, I know their lives will feel empty without Renee. We pray for them as they learn to live without their daughter and sister. I add my tears to theirs as they grieve losing their beloved Renee.

21 for 31 day 7-Happy 18th Birthday Julia

31 for 21-day 6-Arizona Early Intervention Program (AzEIP) Family Cost Participation

Therapy and more therapy, all three girls see three different therapists, we are so lucky to be able to have our ST see all three girls, ditto for our OT and the PT sees both Amanda and Kara. Our medical insurance covers some of the cost, Long term care, a federal program, covers the rest. Without it, I doubt my girls could get the therapy that makes all the difference in the world to them. We could not afford to pay the high fees ourselves, not many people can. We want what is best for them, we are their parents, we love them. We also pay very high insurance premiums and do not understand why the insurance cannot cover more for our girls, but they will not.

Meghan began physical and occupational therapy at age 4 months. Kara and Amanda did not begin formal therapy until they were 3 1/2 years old. Amanda and Kara had to learn most of the skills Meghan did when she was an infant-toddler. Their caregivers rarely took the time with them because in their countries, they truly did not believe the girls had the ability to learn. The chasm between Meghan's abilities at that age and theirs is wide and deep. Kara is filling the gap more quickly than Amanda, but Amanda does have Autism as well, and that gives her a few more challenges.

We had both little girls evaluated by Child Find after they came home. Both girls were given the preschool severe developmental delay "label", compared to Meghan at who age 3, was listed as mild preschool delay on her paperwork. I do not believe any of them are smarter or more capable than the other, each has her own strengths and weaknesses, Kara and Amanda were more delayed due to their life in the orphanage.

I know that therapy helped Meghan, and we instituted her daily therapy "homework" into all of our play as well. Parents are always teaching their children, so truly, it was not much different than parenting kids that did not need the extra help. The main difference ? We had the guidance of therapists, and they had the expertise concerning her delays and showed us how to help her best. In our case, early intervention made a world of difference, we have children to compare Meghan with, two little girls who never received any.

I am sharing this for a very important reason, for those wondering if early intervention makes a difference in a child's development at all. I am addressing the Arizonan legislators, the people who voted to cut the DES budget who oversees DDD programs, who in turn wanted to stop all early intervention in 2009 to cut their own budget. That February there was a vote by Arizona legislators to cut numerous essential services for countless Arizonans, their goal to save the state money on what they considered expendable services. Of particular importance to parents whose kids need the extra help were these cuts:

Eliminate services for 850 infants and toddlers with or at risk of a developmental delay $1,608,800.

Reduce or eliminate in-home services for 4,000 children and reduce or eliminate support services and allowances for children in out-of-home care $15,918,700.

Of course there were many cuts that affected older children as well, and many adults. That was before a public outcry halted their plans. The Arizona legislators and DES found out they could not get away with it, there were marches, protests, emails, phone calls. There was a clear message coming from parents, don't mess with us, we are used to fighting for our kids.

How could they just do away with early intervention? Even they admit that it is essential, important, so what were they thinking? From the azEIP website :

Why is Early Intervention important?

Early Intervention is professionals working in partnership with parents and families of children with special needs, to support their children’s growth, development, and learning. Research tells us that the first three years of a child’s life are critical years for learning. Early care and education have a long-lasting impact on how children develop. During a child’s first three years, it is important to focus on a child’s developmental needs and take advantage of your child’s natural ability to learn.

The state website says this, but the legislators and DES decided this was all horse hockey? Help me out here, how can they deny that early intervention is essential to children who need a little more help? It is simple, they feel children like mine are a drain on state resources, but if their needs can be met by federal dollars without the state needing to spend anything to get those federal dollars, then there may be some help available. If not, too bad?

Read more:

http://www.azcentral.com/news/articles/2009/04/16/20090416dessuit0416-ON.html#ixzz11gr5l8xo

They felt that there were no measurable results, and wondered if it was worth the cost to our bankrupt state. A federal judge ruled against them and halted their plans, but did not stop them, instead of cutting services, they have instituted their brilliant plan of :

Arizona Early Intervention Program (AzEIP) Family Cost Participation

Early intervention was always free in AZ, the attending therapist billed the families medical insurance first and then the state paid the difference. However, most insurance companies would not pay for therapy for children born with Down syndrome, some saying it is a pre-existing condition, as if being a human being is a pre-existing condition, and others stating they only pay for therapy for someone who suffered an injury. Often the state paid the full amount. The costs are listed above, in the millions, not billions of dollars.

With the new health care reforms, I do not believe any insurance company will be allowed to deny coverage for children like mine, which should be good news to the states who are literally bankrupt right now:

http://www.disabilityscoop.com/2010/09/22/rollout-of-health-care/10336/,

The state will now charge families for early intervention therapy on a sliding scale, and truly the only families who will not pay a cent are low income families (those on food stamps-receiving welfare checks). I have friends who are affected greatly by these changes. For instance, for families making around $45,000 a year, each therapy session will cost around $80 (estimate). If you have multiple children receiving therapy like we do, you pay only for the child who gets the most help, the most expensive therapies. That would mean a family whose child gets 3 therapy sessions a week, like mine do, would pay approximately $240 out of pocket a week for therapy, which is a whopping $960 a month. We could not afford it with our already strained budget. I am betting other families cannot either, at least not for long; they could use savings and take out loans I suppose. It is all about saving money, isn't it? That is what we trade the futures of Arizona's disabled children for, saving money!?

My friends who are therapists are losing clients, and income, we already have a therapist shortage here, the results of the first budget cuts. We waited 2 years to get a PT for Kara and Amanda because there are not many left in the public sector and many have moved away.

I understand there is a prevailing attitude that people with cognitive and physical disabilities are a drain on the economy, a feeling that they take more than they give, the squander the good ole TAXPAYER MONEY with their incessant needs, and are otherwise called BURDENS on SOCIETY. (shouting, not me?) Something an old pediatrician said to us about Meghan when she was less than 12 hours old, that she would be a burden on our family, perhaps he meant, on himself or society? So it got me curious, what do they mean, a burden, how? I looked up the word burden and the very first definitions states: Worrying RESPONSIBILITY, a difficult or worrying responsibility. **the burdens of parenthood** Hmm, so a burden is a responsibility? So then, what is the definition of responsibility? “The state, or fact, or position of being accountable to somebody or for something.” It seems to me that being burdened simply means that people who do not want to care or to do anything are FORCED to care and to act. Laws force them to do what is right for their fellow citizens, the fact that we had to pass laws to get our children and loved ones released from institutions is not lost on me.

Americans with Disabilities Act, do you know that politicians are trying to do away with this law? Oh yes, it has been in the news. Why did they law get written? It simply is so unfair to businesses and THOSE people have the nerve to sue those businesses for not having access, or bathrooms they can use, the nerve (yes, being sarcastic here). They lose profit if they pay a contractor to put in an accessible restroom after all, oh, those people in wheelchairs...

I have been reading a lot about disability law lately, some right websites, some left, many in the middle, this one is said to be FAR left, well, according to those who are far right LOL. http://www.raggededgemagazine.com/garrett/scope.htm and the following passage is from their website:

The Americans with Disabilities Act Findings: People with disabilities as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally . . .
. . . have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypical assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society.

The continuing existence of unfair and unnecessary discrimination and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities for which our free society is justifiably famous.

Fear , discrimination and prejudice, issues that have driven societies to do terrible things to people they feel do not deserve to live the same entitled life that they do because they view them as inferior, or perhaps they convince themselves of such, to justify their actions. Do you know there used to be laws in some states requiring people report families who tried to keep their children with cognitive delays home? Their neighbors would report the child and lawmakers would come and forcefully remove the child from their home, putting them in mental institutions. The parents had no say, often being forced to sign over guardianship of their child. There are thousands of stories you can find about this, it happened up to the 1970's, not that long ago really.

Those of us who have children with Down syndrome do not see them as a burden (most of us, I know some do, and often give them up for adoption), they are simply our children and we will protect, support, love and guide them just as we would our other children. To think that someone would come and take my daughters away from us wrenches my gut, can you imagine how you would feel? How they would feel?

However a person feels about this issue, there are federal and state laws protecting all people with disabilities now, but somehow many states, not just AZ, are bypassing some of them, particularly where medical and educational help is concerned. I am sure many high paid lawyers are helping them figure out how, finding loopholes in the law. Thankfully institutions no longer exist as they did up to the 70's, most were torn down after it was discovered that residents lived in deplorable conditions. Out of sight, out of mind, right?

It will be curious to see what happens in the ensuing months as more and more families are forced to drop therapy for their children due to the cost. I feel like we are taking giant steps backwards in disability rights, it worries me a bit, change happens so slowly sometimes, you miss the clues that something serious is happening, is this a trend? It is unacceptable to me that this has happened here, but then a lot of what AZ government has done lately is shocking to me.

What about the children in all of this? Will it change their futures, will they accomplish all they could have if they had proper help, or will they truly be that burden everyone complains about? If they are, who is to blame?