A Harsh Reality.. In My Opinion

I've been letting this next post kinda marinate for a week now.  I know I have strong feelings about the topic... I just hope I am able to express my thoughts keeping the big picture in mind and that those reading will not get caught up in being politically correct.  Maybe, just let what you read sit with you for awhile before becoming offended or angry :)  If  you feel differently, I would love to hear your thoughts too.

I've always had this thing about trying to make sure Sadie looked 'cute'.  I have three older girls, so pretty dresses, cute hair styles, fashionable outfits is no new thing around the Teague home.  But, with Sadie... I have found myself a bit more controlling about it.  That doesn't mean I always succeed- especially those days I am literally sitting on Sadie's back and brushing her hair like a bad round of WWF.  There has been the not so cute bangs, the very short bangs, the too short and tight shirts that caressed her Buddha belly, and the jeans that either a) are too short or b) are too big causing her to have a bad case of 'plumber butt'; but overall she leaves looking clean and cute.

I'm no fool!  I know this is a case of pride and in the grand scheme of things is very worldly and her outfit will make her no better of a person.  I've tried to loosen up- really I have.  I know exactly why Sadie looking 'cute' is important to me.  You know why too... Chances are you probably won't say it out loud.  That would be awful and shallow.

Now, let's go back a week.  I'm sitting in the first class of the school year at the Learning Program through our local Down Syndrome Association.  The topic (not word for word) was basically 'How to have a successful relationship with your child's school'.  To say I was overwhelmed with all the information being pelted in our direction would be an understatement.  I made a few notes under the 'if I ever get super powers' category.  Great ideas, support, and action plans for being that approachable and easy to work with mama.  Then, like it was an after thought, the presenter says something like 'You always want  your kids to look good.  Don't think you can always shop at target.  Go buy the nice surf shirt- Heck, I spend more money on his clothes than I do mine.  If you think people want to work with someone who is not nicely groomed... think again.  Sometimes I see a child and think- that would look dorky on a kid without Down Syndrome.  Please don't wear that!'

Your probably thinking... wow, lady- harsh!  Because that is the PC thing to do.  The 'everyone is a child of God and we are all beautiful in the inside' thing to do.  I wish that was what I was thinking; but it wasn't.  I was like, "Amen sister!  I am a believer."  Yeah, I'm embarrassed.  I like to think 'I don't judge a book by it's cover'.  I like to think I look in the inside and embrace a person's soul.  Why then, do I feel so strongly about my Sadie 'looking cute'?

BECAUSE.... that's why.  Because, people do like working with nice looking people.  Because, kids like to have friends that look cool.  Because, I don't want shallow people to only see DS when they see my Sadie... BECAUSE she is so much more!  Because, no matter what I believe about everyone being a child of God and everyone being equal in His eyes... THE WORLD DOESN'T WORK THAT WAY!

Just yesterday, I was picking up Sadie from a church activity.  A friend I have known all of Sadie's life was sharing some observations she had while teaching the girls how to exercise.  Basically she said Sadie is so cute (over and over) and then shared with me that  her son and daughter-in-law (in her late 30's) have not had a child yet.  Because of her age she has a higher risk for having a child with DS.  She then said after watching Sadie (and  other Down's kids- her words don't slam me) she sees how easy going and loving they are (haha, easy going- what?).  Then she said, "it wouldn't be so bad.  It would be nice.  Not that I would ever wish for it; but it would be good if it happened".  Before you get all DS advocate on her- she was honest, loving, and she has not made the journey we have... so I took it as a compliment; because I truly believe that is where it was coming from.  Anyway, until yesterday because she had never worked directly with her... all she knew of Sadie was how cute she was dressed on Sunday, how cute she looked singing infront of the congregation, and how much we adored her.

I think my daughter shared a good example of what I am trying to say.  She had a friend in school who had a deformed hand.  My daughter is no stranger to accepting others and how the differences in others do not define who they are. However, a couple of weeks ago she said, 'Mom, she is so cool.  For the longest time all I could think about was her hand.  Now that I know her... I hardly remember her hand.' 

I wish everyone knew my Sadie for who she really is.  She is funny, smart, stubborn, kind, loving, crazy, and compassionate.  Unfortunately, that is not who a majority of the world sees when they first meet her.  Too many see Down Syndrome.  Until they can peel the layers and get to know the real Sadie... I'm going to play the game and dress her cute!

Educational Options

Because of the miscarriage I haven't been able to blog 31 for 21 like I promised. The rest of the month will be spent trying to make up for that!

Twenty years ago educational options for kids with down syndrome were slim. Special schools or Special Education Classes were pretty much your only placement choices. Today, research shows that mainstreaming (partial day in a typical class) or inclusion (majority of the day in a typical class with some support) can be beneficial for some of our kids. I will try to find a link of a previous post all about the research done in the UK about inclusion. Briefly, it says that if a child is fully included they test 2 to 3 years higher than a child in SDC. In the UK 70% of all kids are included. In the US less than 10% are included. Educational plans are very personal and there is some pressure in the down syndrome community. Some over eager parents want everyone of our kids included to "prove" to the world our kids are capable. Considering I have homeschooled all of my kids at different times and for different reasons, I feel confident you will believe me when I say each kid has different strengths and weaknesses. They have different needs and different comfort levels. So, placement should be the environment that helps your child thrive and NO ONE should judge a child's potential or a parent's dedication because of their choice.

I have seen high functioning kids, who are academically strong, placed in SDC (special day classes) because of sensory issues. They thrive! I have seen moderate functioning kids placed in typical classrooms thrive because of social interaction. Sadie's first year of school we placed her in SDC Kindergarten because she was young, sick and we felt like typical kindergarten was a stretch but she was beyond preschool. This year, more mature and healthier, she is fully included with 25 mins a day pull out in a resource class to help modify her curriculum. Next year??? Depends on what is best for Sadie. Get the point?

Another important point is that every child with down syndrome is mentally retarded or developmentally delayed. Most kids with ds are tested within mild to moderate delays. A lot of parents don't like the "R" word... I don't like it to much if it is used as a word to describe what my child can not do. Medically and academically, it is true. This was a hard concept for me- probably the hardest in our journey with Sadie. It doesn't mean she can not learn--- just means she learns differently and at a different pace. I notice this most when she is mastering something new. It seems like she learns in steps and each step is obvious- unlike my older children that seemed to learn something over night. It actually helps you savor her accomplishments and gives us an understanding of how hard she works.

Even though Sadie is developmentally delayed (or MR) she has been tested within a normal IQ range. Reality is, she needs help. She learns differently, things are processed differently, her rate of learning is different; BUT, she learns! She is one smart cookie :) Next post will be about our first parent/child/teacher conference as a fully included student...

I Would Take This Journey Again... If I Had the Choice!

6 1/2 years ago when Sadie was born there were tears; but the tears weren't so much for grieving the "perfect child" we lost. They were tears of fear. Of not knowing how her disability would affect our family. Tears that I wouldn't be able to parent a child with special needs along with the three I already had. I was scared about the couple of dozen "possible" medical issues we needed to rule out and worried about how to homeschool and attend all the therapy and Dr. visits.

I guess I never really allowed myself to focus on what we lost. It could have to do with our religious belief that Sadie is exactly who she is suppose to be and that Heavenly Father loves her. We also believe that in the pre-existence Sadie fought hard during the war in Heaven before Satan and his 1/3 were cast out. It is believed that Sadie was a valiant warrior who has been blessed by Heavenly Father to still come to earth and gain a body and a family; but because of the Down Syndrome she will be shielded from Satan and his cunning ways. Therefore, she is blessed with protection here on earth and will be restored to 'perfection' in eternity.

Several weeks ago I posted a facebook status saying something along the lines of how I guess I should just face the fact that I shouldn't have anymore babies since I had my hands full and one graduating HS this year. I was surprised to hear some say I had too many kids (in a very nice, based on religious views and upringing way). I made the joke that if I only had two I would have missed out on Hannah and Sadie... that would be sooo sad. Not only would I have missed out on two of the most colorful, fun-loving, entertaining, and full of life kids; but I would have missed out on Down Syndrome, the down syndrome community, and what living with a child with ds has done FOR our family. Noticed how I said FOR and not TO? I think you get the picture :)

Anyway, today I am 9 weeks along in a very "SURPRISE" pregnancy. I won't get into how many crazy feelings and adjustments we have been through; but I would like to make a point. On Friday, after some red flags, we went into the Dr. to find out the baby was measuring three weeks behind and there was no heartbeat. I knew I didn't have the dates wrong; mostly because that date would put me conceiving the day I took the test (which was very much positive). I knew the pregnancy was over... and today that was confirmed.

So, I sit here... grieving for the baby I am losing. For reals... losing! It is a very different feeling than when they place a beautiful almond eyed floppy girl on my chest and I knew the girl I had spent so many months dreaming of would never be joining our family. No... I can honestly say that any tears shed that day were NOT tears of grieving. I had my sweet little baby. My little girl. A daughter of God. She was alive and was ready to be loved by her family. Down Syndrome is not a death sentence. Far from it! Down Syndrome is a hurdle. A journey that has many ups and downs and tears along the way; but a journey filled with laughs, hugs, snuggles, cheers, and memories. A journey I would take again any day... if I had the choice!

The Right "R" Word

Here's a PSA (Public Service Announcement) starring one of our downsyn friends. Payton is the first little girl shown.

http://www.youtube.com/watch?v=qk9ZhuJt2JY

Down's tests are great risk for all babies Screening for syndrome puts healthy foetuses in danger of being miscarried, new research shows

This article was written by: Victoria Macdonald
and was published in The Observer, Sunday September 14 2008

Down's tests are great risk for all babiesScreening for syndrome puts healthy foetuses in danger of being miscarried, new research shows
Victoria Macdonald The Observer, Sunday September 14 2008 Article historyRisks in screening unborn babies for Down's syndrome are far higher than previously claimed, new research will say this week. For every three unborn Down's syndrome babies prevented from being born, two healthy babies will be miscarried because of the methods used to detect the condition.

The research claims that, in detecting and preventing the birth of 660 Down's babies, 400 healthy foetuses are lost.

The research casts doubt on the advice and risk assessment given to women when they are deciding whether to undergo the screening and subsequent testing to assess the health of an unborn baby. The National Health Service currently cites a miscarriage rate of between 1 and 2 per cent following the invasive amniocentesis and chorionic villus sampling (CVS) tests, which are offered to expectant mothers who are considered to be 'at risk'.

The authors of the paper - which is being published in the Down's Syndrome Research and Practice journal - say that, while the number of pregnancies diagnosed with Down's syndrome that are terminated, miscarried or born are recorded, no analysis has ever been attempted to determine the number of non-Down's babies lost.

The authors are from the charity Down's Syndrome Education International and might therefore be accused of pursuing their own agenda, but the research has been shown to a number of screening experts who have assessed the findings. In a film to be screened on Channel 4 News at 7pm on Tuesday, Professor Kypros Nicolaides, head of the Harris Birthright Centre at King's College Hospital in south London, will say it is 'completely unacceptable' to lose this number of normal babies.

'Our aim must be to improve the detection of foetuses with Down's in those women that want to have a test and dramatically reduce the number of normal babies that are lost as part of this process of screening,' said Nicolaides, who has been a pioneer in the use of ultrasound for improving screening.

The authors of the study - Frank Buckley and Professor Sue Buckley, a director of the charity who also works at Portsmouth University's psychology department - blame false screening results in the initial blood testing and then the use of subsequent testing, which involves inserting a fine needle through the woman's abdomen and either withdrawing amniotic fluid or taking a tissue sample.

To detect as many Down's babies as possible, the initial screening threshold is set wide, which means that more than 95 per cent of women defined as 'high risk' will not be carrying a baby with the disorder, yet most go on to have the amniocentesis or CVS tests.

The Buckleys and Nicolaides are particularly concerned about how well qualified the staff are who carry out the invasive testing and about their ability to use ultrasound. Studies in the past have shown that loss rates following amniocentesis are six to eight times higher among inexperienced practitioners.

Because no records of non-Down's baby losses have ever been kept, the Buckleys say that their ratio of three to two can only ever be an estimate. But their methodology appears to have been broadly accepted.

'We are looking at the wider question of public health policy,' said the Buckleys. 'The screening for Down's syndrome has consequences for every pregnant woman. You cannot look at it as just a search-and-destroy mission focused on babies with Down's alone.'

About 750 Down's babies are born every year in England and Wales and the Department of Health said the primary aim of screening for the syndrome was to help women make informed decisions about their pregnancies. A spokesman said the programme was based on the latest evidence and supported the most effective test in terms of both the detection rate and the aim of lowering the screen-positive rate 'in order to minimise the number of diagnostic tests'.

The National Institute for Health and Clinical Evidence has recommended a new 'combined screen', which is meant to be more effective in assessing who is at risk, but this has yet to be rolled out nationally.

The Down's charity has now written to the government asking for a thorough reappraisal of the 'purpose, performance and safety' of the screening programme.

· Victoria Macdonald is social affairs correspondent for Channel 4 News.

THE SAD THING ABOUT THIS... I KNOW THERE IS SUCH A LONG WAITING LIST IN THE US FOR ADOPTING KIDS WITH DS. I WOULD LOVE TO SOMEDAY ADOPT ONE- DON'T KNOW IF IT WILL EVER BE RIGHT FOR OUR FAMILY- BUT, IF THEY ONLY THOUGHT ABOUT CARRYING THE BABY TO TERM AND ADOPTING THEM OUT. AND ALL THOSE BABIES LOST TO INCONCLUSIVE TESTS!!!! WHAT A SHAME!!!

Our Friend Kennedy

This is our friend Kennedy who is one serious trooper. Besides having to live without Daddy (he's serving our country) she has ds, leukemia and AAI. Look here for more about this sweet little girl and her amazing mommy!!

Please excuse the video- I don't know how to get a smaller version- unless someone can tell me!!

Photo and video editing at www.OneTrueMedia.com

Down Syndrome Babies: An "Endangered Species"?

By Barb Tennant
October 27th, 2006

Under Barb Tennant's article is a handwritten speech by Mrs. Tennant's daughter, Julie Tennant. Julie talks about her Down syndrome, her love of life, and how blessed she is an extra "love chromosome."

In October of 2006, my husband and I visited the Holocaust Museum in Washington, D.C. It was heart-wrenching to see what Nazis did with “special needs” people. Their methods of trying to create a “pure” race” and use the processes of “selection” were horrifying! Those tactics would never be allowed in the United States…would they?

Actually, something similar to genetic "purification" does happen in America today. A simple blood test for pregnant women will show the possibility or probability of giving birth to a baby with Down syndrome. A study in the March 2006 issue of the American Journal of Obstetrics and Gynecology reveals what happens to babies who are prenatally diagnosed with Down syndrome. Billed by the Harvard University Gazette as “the largest and most comprehensive study on prenatally-diagnosed Down syndrome to date,” the article reveals that of all the women who test positive for the probability of this kind of birth, 80-90 percent choose to abort. The sad situation is made worse by the fact that some prenatal testing for Down syndrome is wrong 20-40 percent of the time.

Is this any better than the Nazi tactics for doing away with the unwanted? No! We have tidied the process and made it legal but the end result is the same. A Canadian study of 22,000 women who received prenatal diagnosis for Down syndrome found that 88 percent chose abortion. That would count for 19,360 blessings unborn.

What I find so ironic is that if Down syndrome babies were considered a separate species, they would all be eligible for the “endangered or threatened species” list.

The Endangered Species Act of 1973 was created to “protect endangered and threatened species and take steps to recover these species as key components of America’s heritage.” An “endangered species is one that is in danger of extinction throughout all or a significant portion of its range.” Killing 88 percent of a species would certainly qualify as being in danger of extinction!

To help conserve genetic diversity, the ESA defines “species” broadly to include subspecies and distinct populations. The ESA decides which species to list by a priority system designed to direct their efforts towards those in greatest need. In their own words, they give no preference to popular species or so-called “higher life forms.” Shouldn’t pre-born Down syndrome people at least be considered “a life form”? Where are the PETA people? Why isn’t the ACLU jumping to defend this life issue?

If Down syndrome children were identified as an endangered species, organizations all over the world would probably pour resources into a “Save The Down Syndrome Creatures” foundation. There would be rallies, posters, and bumper stickers. Congress, on behalf of the American people, protects many varieties of mammals, birds, reptiles, amphibians, fishes, clams, snails, insects, arachnids, crustaceans, and several plant species. As of October 10, 2006, a total of 1,009 different species are listed as endangered and 302 as threatened in the United States alone. But alas, a human being who will potentially have Down syndrome isn’t given as much value as one of these. DDT was even banned in order to preserve the eggs of bald eagles—that is, would-be eagles! But we won’t protect “would-be” people with Down syndrome? Why is there no outcry in the media?

I have tried to understand the evolutionist and pro-choice groups’ points of view. I try to keep an open mind, but their arguments seem to contradict themselves. “We’ll protect these but not those…these creatures are valuable but those lives are worth less than our freedom…” Perhaps my strong opposing stance comes from the fact that my own mother tried unsuccessfully to abort me, 58 years ago. The fact that I can write this and even have an opinion is an amazing gift. There isn’t a day that goes by that I am not aware of how precious life is. If abortions were legal in 1948, I would have no voice to speak on this issue or any other.

The other reason I feel so strongly about this subject is that our youngest daughter Julie is 31 years old and has Down syndrome. Last September, Julie spoke to over 500 people at a Sanctity of Life event and received a standing ovation. Her entire being radiates with a profound simplicity and honesty that this complicated world desperately needs. Why 80 to 90 percent of women abort when they think they may have a child – a gift! – like this is beyond my thinking.

To me, pro-choice isn’t a matter of which of my fetuses should live. It’s a matter of choosing to accept the fetus I conceived and raise them to their highest potential.

Julie's Speech on Sancitity of Life Sunday:
(go to this site to read her speech)

http://www.centerforajustsociety.org/press/forum.asp?nav=publications&cjsForumID=1023

Barbara and Julie Tennant live in Syracuse, New York. Barbara's husband--Julie's dad--is named Randy, and the Tennants have three other children and four grandchildren. Barb and Randy have a passion to help build strong families. Please email your comments to forum@ajustsociety.org.

Inclusion vs Special Day Classes

Today Frank Buckley, the Chief Executive Officer of the Down Syndrome Educational Trust and Sue Buckley’s son came to our monthly meeting for our learning program at the Down Sydrome Association of Orange County. He was there because they are starting a new program (or corporation) in the United States that will help bring some of the teaching methods here. It is really quite interesting- things like training aides (because you don't have to have any formal training in most areas), the see and learn program, etc. He told us they are going to hold a conference here in 2009 with Sue Buckley and specialist from around the world.

So, here's the interesting fact he shared with us about inclusion. He said that the number of kids with ds included in the United Kingdom is 80%. Guess how many kids are included in the US???? Only 7%!! Wow, what a difference. No wonder so many districts have such a hard time with inclusion. Although it is the law, or our right, to include first- it is a realitively new thing and they don't have that much experience with it. I know this is a touchy subject for some- so let me say right now.... I respect anyone's decision either way. You know your kid the best and you know what kind of class setting is best for them. I would like to have Sadie included- but that will be determined by her and her needs. Right now we are in a SDC for preschool and I couldn't be happier with the program or the teacher!

But, they did a study on kids who were from two different areas- one that offered SDC's (in a separate school) and one that offered inclusion. So the study didn't have variables like that kids that are a little more high functioning, etc. that typically fight for inclusion. He said that the kids who were included were 2-3 grades adhead of the SDC classes. Once again... no judgements- just interesting. He did say one thing, since we have the option- what would it hurt to try inclusion? It is easier to start with inclusion and change to SDC. If you start with SDC it is like swimming upstream. It is like changing their whole world and teaching environment.

Parable of the Butterfly

We used this poem for a lesson once about individual worth. It hit me hard because it was about the time of Sadie's transition into public school at the age of three. I spent the first three years of her life doing hands on therapy and trying to save her life. At three I was asked to surrender my role at co-therapist and trust the school system to know, love and teach my child 3 1/2 hours a day. This poem gave me a little understanding and faith in God's will.

Parable of the Butterfly

A man found a cocoon of a butterfly. One day a small opening appeared. He sat and watched the butterfly for several hours as it struggled to force its body through that little hole.
Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could, and it could go no further.

So the man decided to help the butterfly. He took a pair of scissors and snipped off the remaining bit of the cocoon. The butterfly then emerged easily. But it had a swollen body and small, shriveled wings. The man continued to watch the butterfly because he expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened! In fact, the butterfly spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly.

What the man, in his kindness and haste, did not understand was that the restricting cocoon and the struggle required for the butterfly to get through the tiny opening were God's way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon.

Sometimes struggles are exactly what we need in our lives. If God allowed us to go through our lives without any obstacles, it would cripple us. We would not be as strong as what we could have been. We could never fly!

I asked for Strength.....And God gave me Difficulties

to make me strong.
I asked for Wisdom.....And God gave me Problems to solve.
I asked for Prosperity.....And God gave me Brain and Brawn to work.
I asked for Courage.....And God gave me Danger to overcome.
I asked for Love.....And God gave me Troubled people to help.
I asked for Favors.....And God gave me Opportunities.
I received nothing I wanted ....And everything I needed!

Well, it's been a week!

So much for trying to blog at least every other day... I guess I think there is nothing interesting for me to blog- but how can that be in the Teague household?????

So, I'll just leave you with a poem I found on someone else's blog.. one I have loved many times in the past 3 years.

The Creed of Babies with Down Syndrome

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Some notes from Sadie's IEP

Just thought I would share another post from downsyn I made right after the IEP...

"I'm toast!!! I can't believe how exhausting these past few days have been. I decided early that I wasn't going to stress out and make my family miserable while I waited to see what the school district thought about Sadie. I was doing a good job until yesterday about 2 pm. Last Tuesday she was assessed. I loved the team and thought that although she didn't do everything she could- she also did things we don't see her doing consistently- so everything pretty much came out even in the wash! After the assessment they keep saying how attentive she was, what a long attention span she had and how determined she was even though she didn't complete a lot of the tasks. Ok- I'm reading between the lines.. that means she will do well in therapy because she will sit and try- and she needs more instruction because she wasn't completing the tasks. Yesterday my husband got the report faxed to his office. He started reading it to me, and I am a visual person, so I tried to listen and not make judgments. I agreed with almost all of the results. What she could and couldn't do- or at least how she was testing. I've been told she isn't a good tester- but you just need to observe and see she does really well. Every therapist, dr., you name it tells me how high functioning she is. As I'm hearing the results I hear, her cognitive level is very low functioning. Ouch!!!!~ What is he talking about? The tester called and I asked him 4 times who she is being tested against, all three year olds, typical 3 yr olds or just kids with special needs. He tells me just kids with special needs. So she is in the 1 % of kids with special need? Like kids who won't give any eye contact, kids who have no control of their body?? I was devastated. I cried for 4 hours. I finally decided he didn't know Sadie and I knew she was sitting on my floor reading her book, singing songs and was happy. I have one kids who scores 99%-100% across the board on all her standardized tests and can't follow a three step command, freaks out in a bind and who struggles to be happy everyday. She's the one I would worry about- but the school system thinks she has it made. Long story short- he tested her on an average IQ range. She scored in the middle of 1%. I'll take that. I know she is mentally retarded. As much as I hate it, it comes with the Down Syndrome. 1% on an average IQ is not in the mentally retarded range. So, even though she did not do as well as we know she can- and even though she was delayed- they said she is within normal IQ range. Not by much- but she is. Then they spent the first 20 mins. telling me how great she did and how much they think she will thrive in school. I'm so exhausted. I should have never listened to them in the first place. Sadie is Sadie and no test is going to change that. I will have to brag a little- her receptive language is 34 months (she was 35 at testing) and her social emotional is 38 months. How could any kid with that kind of receptive score be very low functioning??? I think I'm the one who needs help since I listen to him!"


And here is an update after some replies (I'm not sure they understood what I was saying)...

"Thanks everyone! I happen to have my friend who came into town a couple of minutes before the IEP with me. She is a special ed. teacher for severally profound disabled children in Utah. She was horrified they would give her a test that they do not use on children with Down Syndrome (because it is for typical children). Which is really not a good test for her anyway, because she is more audio and it was a visual acuity test with fine motor skills- and she has poor wrist and shoulder strength and movement. I think they were trying to compliment Sadie because she was so cooperative- but the misunderstanding was devastating. I really thought they were telling me she was profoundly retarded. Which would be hard no matter what- but came out of no where! Every therapist she has ever worked with has been amazed at her abilities. Good news... they gave her more speech than usual because of her attention span. And they were so worried about the misunderstanding-that they gave her OT through the summer with an evaluation due by the start of the school year and a PT and APE evaluation. She is actually getting more therapy than I thought she would. Currently she does not qualify for speech because she does not have enough of a delay. Don't get me started on that one!!!! Her articulation has a lot to be desired and she still is delayed."