Willowbrook Institution Follow up by Geraldo from his 1972 visit

In 1972, Geraldo Rivera did an expose on Willowbrook Institution in NY.  If you have never heard of Willowbrook, if you have never thought what an institution looked back in the 1970's, if you have ever wondered about institutionalization in the 60's and 70's, watch this follow up story about Willowbrook.  You will forever remember this place.
(click on the title and it will take you to the video)

potty and more potty

Potty training is seriously driving me crazy.....Yesterday she pooped in her underwear 3 times and peed all over herself twice.  Keeping on top of putting her on the potty regularly is exhausting, sometimes she goes and other times she won't.  I'm having a really hard time figuring out how to get her to have a BM in the potty too.  She will grunt  and grunt and I will repeatedly run her to the potty, but always she goes the second her underwear are pulled up and the 2 seconds that I'm not stalking her.  The person getting potty trained here is "me."  I can't give up yet though. I really do think that once we get her BMing on the potty that it will be easier.  Any suggestions to get her to release.....

blowing raspberries....not funny to the speech therapist

"Sadie is a wreck today, " was the first thing the pregnant twenty-something-first- time-mom speech therapist said the moment she saw me in the lobby of Sadie's school an hour ago.  She continued to describe how Sadie was blowing raspberries or zerberts and she continued to tell her "no" and sign "stop" during her short 20 minutes of speech therapy.  Her therapy session is at the end of Sadie's half day preschool. She continued to describe how Sadie thought it was funny and continued even though she said "no" and signed "stop."  She was genuinely frustrated that Sadie continued to do this. And truthfully, Sadie looked like she had been crying, which is VERY rare. 

Okay so Really?????  Sadie IS intellectually disabled, she has the intellect of a two year....what the @#$% do you think two year olds do.....they blow raspberries and zerberts and they think it's funny.  Honestly in the scheme of life is blowing raspberries and zerberts REALLY that bad.  Sadie is essentially non-verbal, so how else you you expect her to communicate?  The fact that the speech therapist found it necessary to complain over something so small the moment she saw me is concerning.  Hell, she's lucky Sadie didn't poop in her underwear or pee all over herself.  Hell, how about starting the conversations with a positive comment first and then pick your battles.  Really? Blowing raspberries is the definition of Sadie being a wreck today in a 20 minute speech session???

GRRRRRRR...........

 

Blogger Hibernation

I think I'm ready to come out of blogger hibernation.  I started this blog knowing that my audience was "me."  I thought a few people here and there might read it, but really it was for me to express my feelings and in many ways, this blog became my friend.  The friend I could tell anything to, share anything with, without judgement.  Ironically, I have been saying for the past few months that I have been hesitating to write because I was nervous about Sadie's article and I knew the blog would be mentioned, I didn't know who would be reading it after it was in the paper.  


But I just realized that might have had nothing at all to do with my lack of posting.  I just now in the last 3 minutes and the previous paragraph realized that I haven't been sharing because I didn't need to.  


In the past 3 months I bonded with two of the most amazing women. They see me truer than anyone ever has..they both have children with special needs and they know exactly what life is like.  The unspoken connection that the three of us share has brought a sense of peace to the craziness called my life.  I have spent the past 5 years isolated from nearly everyone and I just now realized how much happiness they have brought to my life.I realized just how lonely I have been.  We have been sharing everything with each other and it feels good to have such wonderful friends.


We meet for coffee, or share a meal, we cry through movies, and we even give support with hugs and crying together.  We know each other, we KNOW.  With a look, a phone call, or a text, I know I've got friends for life.  


And so I'm ready to come out of blogger hibernation because I have a lot to share now, wonderful things have been happening and I feel like I'm living again.  And so the sequence of events that keep leading me to something new all started right here with this blog, this friend that I counted on and I could tell anything to, all thanks to Sadie giving me a new perspective on life and taking nothing for granted.  


I'm looking forward to sharing more....for starters....Have you seen the movie Extraordinary Measures with Brendan Frasier and Harrison Ford?  The movie was inspired by the true story about the Crowley Family in the novel The Cure by Geeta Anand.  John Crowley also wrote a memoir, Chasing Miracles.  Anyway, our local children's hospital is hosting its annual bioethics conference and John Crowley is the key note speaker for the day.  Anyway, as one thing has lead to another, as it always will, I was asked to sit on the parent panel at the conference.  Anyone that knows me knows that I'm pretty shy, so the thought of sitting on a stage in front of 200 heath professionals scares the @#$% out of me.  Thankfully, I have several more weeks to calm my nerves and read The Cure.  Chasing Miracles was powerful and hit home.
Looking forward to more blogging....

quote

"Justice will not be served until those who are unaffected are as outraged as those who are." -Benjamin Franklin

Virginian Pilot Article

http://hamptonroads.com/2010/09/sadie-will-never-grow-and-her-parents-will-never-give?cid=srch

Sadie

Sadie always playing with her tongue.

The only photo from Sadie's first day of school. hmmmm, I had good intentions of taking a lot, I just don't know what happened?

Something to think about....

From one of my favorite blogs:

Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010Yesterday at 4:33pm http://davehingsburger.blogspot.com/2010/08/people-who-are.html?spref=fb

Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010 The People Who 'ARE' It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about products that protect from fire. Last I looked there's only ever been protests about the use of a word that demeans a group of people. No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt. People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others? It's time to recognize that the 'R' word is an attack against who people with with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the 'people' who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they 'don't understand, poor dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified. The people who 'ARE' what the 'R' word refers to have a long history. They have been torn from families and cast into institutions. They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized. They have been held captive, have been enslaved, have had their being given over to the state. They are the group in society most likely to be physically, sexually and financially abused. They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system. They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts. They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt. They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity. They are the least likely to ever be seen as equal, as equivalent and entirely whole. They are the victim of some of the most widespread and pervasive prejudices imaginable. They are those that the Nazi's thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats. They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out. They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship. That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world. That they are a 'community' is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future. That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat. They are a people. They ask for respect and receive pity. They ask for fair play and are offered charity. They ask for justice and wipe spittle off their face. They ask to silence words that brutalize them and their concerns are trivialized. They ask to walk safely through their communities and yet bullies go unpunished. They ask to participate fully and they are denied access and accommodation and acceptance. And this is NOW. This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice. It is a voice not yet heard. It is a voice not yet respected. It is a voice not yet understood. But it is speaking. And when it is finally heard. The world will change. The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010Yesterday at 4:33pm http://davehingsburger.blogspot.com/2010/08/people-who-are.html?spref=fb

Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010 The People Who 'ARE' It's in the press again.

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I thought...

I thought I would have to teach my child about the world, but instead I have to teach the world about my child." ~Unknown
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I am determined

The past two weeks in many ways have flown by like a blur. I've been habit training Sadie to go on the potty and it has truly been a tiresome experience. We (I) have spent countless hours sitting, saying, repeating, "Sadie, go potty." I even went so far as to paint the bathroom at the beginning of the week, with the thought that if I'm going to be in here this much, I might as well do something. We immediately had pee pee success and I have really felt that with a schedule and a routine that Sadie will be able to be habit/time trained.
For those of you that have no-idea what "that" means, habit/time training essentially is training the caregiver to put the child on the potty at routine times or after routine habits. For instance, immediately upon waking, eating, napping, etc. or time training meaning every hour putting her on the potty. I'm getting all this knowledge from Toilet Training for Individuals with Autism and Related Disorders by Maria Wheller. Now for all of you that think WOW I didn't realize Sadie had advanced so much or understood that she could go on the potty. My response to you is once again, Sadie sometimes gets it and sometimes she just doesn't get it, and I'm reminded of that because she just pee-ed all over the couch, not because it was an accident, not because she has even an understanding that that was the wrong place to pee, but because SHE JUST WENT. She had to go, and so she did, without any bit of conceiving that she should have gone on the potty. Now, once again, don't get me wrong, just this morning I was sitting in the kitchen and out of the clear blue, I hear her tinkling on the potty all by herself. Yes, she walked her little butt right on in the bathroom, sat down, and pee-ed. But that is the enigma with Sadie, just when you think she gets it, she shows that she doesn't, and then she shows that she does again. AND, that is why potty training, this habit/time training is going to be, without a doubt, an ongoing process and possibly be months in the making of forming the habit. They say something like 7-12 times make a habit (someone better fact check me on that), but that it takes hundreds of times for a child with an intellectual disability to learn something too (fact check that too). And so with that said, we are on at the end of our 15th day of naked habit/time potty training and I'm not about to stop now. We are going to push through this and we are going to do it, I don't care if it takes 1 year or 5 years.
I am determined.

Eating

Imagining there are people starving in the world ...Sadie has virtually every opportunity to eat always. Yet, she could truly care less about eating...WTH
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Washington Post

We are in tomorrow's Washington Post. Our photos are online now... http://www.washingtonpost.com/wp-dyn/content/article/2010/07/21/AR2010072102651.html?sub=AR
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85% divorce rate

http://supportforspecialneeds.com/2010/07/21/eighty-five/ by my favorite blogger Robbert Rummel-Hudson, Schyuler's Dad
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Microarray SNP results

Hello everyone! Sadie had the Microarray SNP test and a CBC blood test. We found out today that she is anemic and will be taking iron supplements. The SNP test showed that her new karotype is deletion 8p23.2 extra xp 22.13 to the terminal deletion. In short, she is missing more chromo 8 than we originally thought an...d she has a larger band of extra xp than we previously thought too. What does all this really mean....???? Not to much, nothing has really changed....I wish I could say differently, but Sadie is Sadie and she will continue to show us her path.

a disgusting topic, still funny none the less

While I haven't posted too much in the past few weeks, I found it funny to just go ahead and post this quasi-milestone....Sadie has been getting a complete giggle out of farting. There I said it. When the moment hits her, she will look dead at me, fart, then just so big and proud, she smiles, and follows that up with one of her classic squealing giggles.


With that tidbit of information out there in the universe, I can fill you in on the past few weeks and how summer is going around here.


I honestly haven't felt like writing much because of my new dilemma with making sure I paint a real picture of life around her/here. I struggle to stay strong. I try super hard to keep all emotions about the disappointments about Sadie hidden even from myself. When I feel those tingles of pain ripple through my soul, I quickly tell myself to pull it together. I remind myself of all the wonder and gratitude she has brought to my life. No matter how hard I try to squelch those feelings, they pop in and out weekly and on occasion, daily. I can compare it in a sense to the same feeling when you see one of your children nearly fall, that outer tingle on your skin as you reach out to catch them. But this is different this is the inner tingle, the inner fear that no matter what I do, I CAN'T FIX HER. It's the tingle inside that makes your eyes well up with tears and you are a breath away from pulling it together or finding a moment to cry.

And so I wrote that hours ago, in fact it was this morning, but still to reread it before posting, I wouldn't change a word.

On another note, the summer seems a third over and we have been going to the beach, water park, hanging in our back yard, and of course watching A LOT of Disney's Princess and the Frog. Sadie's attendants have made it possible for all the fun outside these four walls and I'm grateful to live in a country that offers services to her. I don't feel paralyzed to the enormous amount of energy it takes to get both girls out the front door, especially Sadie who still requires 100% help to dress, potty, eat, etc.

Both girls did have random fevers last week that lasted about 48 hours and both recovered without major incident.

Overall, we are having a wonderful summer.

Dear Universe

Thank you for the bizarre coincidences in the past couple of days....they are really getting me thinking. Although some say there are no such things as coincidences.....hmmmmm
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Sonnets

Elizabeth Barrett browning: 685. Sonnets from the Portuguese iv    IF thou must love me, let it be for naught     Except for love's sake only. Do not say,     'I love her for her smile—her look—her way   Of speaking gently,—for a trick of thought   That falls in well with mine, and certes brought          5   A sense of pleasant ease on such a day'—     For these things in themselves, Belovèd, may   Be changed, or change for thee—and love, so wrought,   May be unwrought so. Neither love me for     Thine own dear pity's wiping my cheeks dry:   10 A creature might forget to weep, who bore     Thy comfort long, and lose thy love thereby!   But love me for love's sake, that evermore     Thou mayst love on, through love's eternity.  
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end of school=beginning of summer

well...one more short week and another year of school will be over...summer school or extended school year begins...it still feels like a toss up to me...driving clear across town for 3 hours of summer school doesn't sound that exciting, but the 2 hour break I'd have would be great. ESY might also mess up our summer plans for the water park and beach, but then again ESY is only 5 weeks....see what I mean...I keep talking myself in and out of it. I guess the bottom line is...what is best for Sadie and the greater good of the whole family at the same time....ok still can't decide...

recent obsession with ice

Sadie has replaced her bubble push talk obsession with ice.  So I took one of her cheaper one push buttons and a photo of ice, I put it in a 4x6 photo sleeve and taped it to the refrigerator.  Every time she wants ice she pushes the button. It seems that she is doing this every 2-10 minutes…. The idea is that she gets an immediate response and hopefully learns to push the buttons to communicate her desires…..hopefully….

energizer bunny

funny how when you make a vow to be honest, that you then reconsider just how honest…even omitting…that’s not honest either is it? So, my last post i made a vow that my blog posts would be real…and here’s the reality.

i took shelbi to the new park on the beach this morning, the one for “all” abilities…and to my happy surprise, i ran into a  friend who has a little girl with Down Syndrome.  I consider this friend to be very similar in personality to myself and we always have lots to talk about.  Her daughter is about 6 weeks younger than Shelbi.

now here it comes…the truth…i watched her chase after her, assist her with all levels of the playground, the slide, the steps, and we followed her around chatting , while she followed her little girl around to keep her safe.  it finally occurred to me that this is EXACTLY what i must look like to all other people when i am chasing after sadie.  i just kept thinking, how can it not be obvious to the people around me that while i chase and follow sadie that it must be exhausting…she’s like the energizer bunny….she just keeps going.  i wonder what other people think when they see us together, when they see us following sadie for her safety. when they see that we NEVER have the chance to sit and talk, that we NEVER get the chance to enjoy the meal with everyone else…….is it really not so obvious?

usually when we go out to the park, cookouts, family functions, most of the time, everyone else is able and allowed to sit in their little *circle of friends and family*…they get to catch up and chat, but with sadie we are in constant movement to keep her safe from falling, putting dangerous things in her mouth, climbing on or standing on objects that would hurt her, holding her hand as she walks across uneven ground.  and i walk and walk and walk and the little energizer bunny just never slows down for a break…NEVER….and…

thank you all the people who have been aware of the never ending following that we do to keep sadie safe and especially a big thanks to Amy and Nanny for helping me have fun at last Sunday’s cook out by following sadie and helping me keep her safe, while also being able to have some fun too.

NUK

I'm adding this video because the OT keeps telling me to use the NUK, which we do all the time and have had for the past 2 1/2 years. This video was taken March 2008..........

I'm exhausted with the same ideas and need new ideas to help her chew, swallow, and reduce the drooling. but when you have a child who could really care less about food and eating and seems to be stuck in the put everything in her mouth phase....well what else am I supposed to do???????

honestly

Lately, I’ve been reading a lot of blogs by other women who have children with disabilities.  The more I read, the more I feel like I’m painting a fake coat of paint over my life in my blog.  These women are truthful, deep, eloquent in their words about their lives.  They say all the things that I want to say, all the things that I blog throughout the day in my head.  I’ve been realizing that I always cut the truth short and try to make it a sweet positive picture.  I never want to burden anyone with my normal, my reality, my disappointments. I never want to offend anyone, especially the people who I love the most who read this, but truly don’t get Sadie or they are afraid of her, or they are afraid to say anything…say something…After all, the majority of the people I know, simply have nothing to complain about, well besides the insignificant normal issues of parenthood or life. When someone asks about Sadie, I most always reply, she’s great, thanks for asking.  But when I read the posts by these total strangers, these foreign bloggers, these yahoo groupers, I feel connected and it feels good to know I’m not alone in my feelings. 

It hit me the other day after having a few conversations with my new friends.  My new friends who also have children with disabilities, that the dynamics of my old friendships have changed, and I’m the one who changed.  I’m the one who doesn’t have the patience to listen to the trivial.  I don’t know exactly where I’m going with my post/point here, but I just want to start being real here on this blog.  I don’t want to sugar coat it, I want other mothers who might be in the same position as me to feel a connection to me the way I do to them. I never meant to mislead anyone to think that life with Sadie is easy and wonderful all the time.  Don’t get me wrong, life is wonderful and I have a lot to be thankful for, but it isn’t the normal that most of my normal friends have.  (please don’t hit me with “who is normal”) And this reminds me how thankful I am for the fact that I appreciate everything that Sadie does in her life.  Every little utterance, every hug, every kiss, I’m even grateful when Sadie puts her straw cup on the table rather than throw it.  Silly to you maybe, but that is a huge accomplishment and testament to her cognitive growth…she reached that milestone, and I love it. 

at the botanical gardens

We celebrated Mother's Day with the family at Botanical Gardens. 

 Sadie absolutely loves to be around other people, smiling, laughing, simply

exploring. This photo was taken after she spent a few minutes waiting in
line to see the bald eagle nest at the Botanical Gardens. She patiently
stood there and when her turn came, she jumped up and down with her arms in
the air indicating that she wanted to look next. And she actually did look
for just a second. But most of all she enjoyed being on the step to the
telescope and Memaw standing behind her trying to help.

Grateful Mama: Thoughts on mothering my daughter

http://sugarmagnolia70.blogspot.com/2010/05/thoughts-on-mothering-my-daughter.html

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Beach!

We made it!!!
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We made it!

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Hibiscus Flowers on DAFOs

The Henry's Family....Sadie has the same hibiscus flowers on her dafos!!!
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Ortho update

I'm making this short and sweet because I'm exhausted. We saw the orthopedic surgeon yesterday for Sadie's annual checkup. He said her feet look good, but she is still toeing-in. He recommended tibia torsion surgery, where the tibia is cut and then turned, and reattached so the foot is turned out or straight. She would then be in casts for 6 weeks....sounds like ZERO fun...for me or her...for right now...i say NO.

Several postings ago

I would like to say for the record that I don't agree with the doctor that said Sadie was experiencing the terrible 2s....She didn't feel good and had the beginning symptoms of a sinus infection. She probably had a headache...anyway, she ended up being on back to back antibiotics 5 days after that appointment and a runny nose 1 day after that appointment. AND she is now on allegra for allergies.

At Duck

Day at the Beach

Killing time between doctor appointments at the park

Geneticist appointment in the a.m. And PCP in the p.m. We got lucky and spent a great 45 minutes enjoying the sun and beautiful weather.
There's a newer better Microarray test that shows the bands of genes on a chromosome up to 2,000,000. It's called the SNP (pronounced snip) Microarray. The last test Sadie had a year and a half ago was the CGH Microarray, which showed up to 1,000 bands.
This is so important because genes control more than just hair and eye color, they also control, block, and communicate (epigenetics) with tumor receptors, cancer, other medical issues that might come up. Knowing which genes are missing, in Sadie's case, will help us keep a close eye on any potential medical issues. We know that Sadie is missing the gene that suppresses bladder tumors. So we will monitor her bladder.
Etc etc etc....
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Pool

All wet, all dressed, in the pool!
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School

I was responding to a question about preschool to Kindergarten. I
figured I might post this, especially after writting it down...this
was her path from private inclusion to now public "reverse
mainstreaming" (inclusion)

Well, Sadie had a wonderful experience at All Saints in the 2s class
and the director Dee was very open to having inclusion. However
wanting inclusion and having teachers willing to teach it, well that's
a whole different set of issues.
Sadie was in the 2s from Jan to May 2008. When she started in Sept
2008 in the next group up, one of the teachers actually refused to
teach in the same room as Sadie. She very bluntly stated that children
like Sadie belong in a special ed self contained classroom. We were
shocked and beyond belief that the director stood for that behavior,
especially when she told us she wanted Sadie at her school. The
director moved the teacher to another classroom and we continued
there. Sadly, the other teachers let Sadie play alone while they
engaged the other students. They even went as far to tell us that we
should only bring Sadie to school in the morning after she had a BM.
As if we really had control over that!
Ultimately, we moved her out of All-Saints at the end of November '08
and she started self contained at JBDey. Jan-June '09. We felt like
they were good enough, but still not the environment we wanted. That
drove me to look in to other preschool inclusion options. Donna Robel,
along with Susie OConnell met with the VB special ed dept. And
ultimately they were working on a pilot "reverse mainstreaming class"
modeled after Chesapeake.
Now, Sadie is at Birdneck, with the most amazing teachers in an
inclusion class, 6 sp ed and 6 typical.
My advice is to push for another year of preschool. How old is your
child, birthday? As long as they are 5, they should be able to go to
preschool. You might do some research and see if you can call an IEP
meeting (in writing). See what the team recommends, try to stand your
ground, find all your options!
Maybe someone who knows the answer about the age allowed in preschool
can respond!

--
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Lisa

Sadie's Blog: http://sadie8p23point3.blogspot.com/

Shelbi's Blog: http://babybeachgirl.blogspot.com/

Sadie's school

--
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Lisa

Sadie's Blog: http://sadie8p23point3.blogspot.com/

Shelbi's Blog: http://babybeachgirl.blogspot.com/

Adjectives

What adjectives would you say describes this photo?

R-word

So a drunk stranger on a bike yelled a R-word joke as he passed our street. Some might say don't be so sensitive, others might say wouldn't it hurt you if you have an intellectually disabled daughter, who is the most loving, beautiful, innocent little child. Did you know that she didn't choose her intellect, did you know that people are injured, or perhaps people grow old and can't remember, perhaps you are still young and when you do something silly...you say that word. Do you mean it positively? How about saying a joke about the most vulnerable people, who are the most loving. I'm just saying...maybe you should think twice...
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Back Yard

So to sign back yard, you throw your thumb over your shoulder and then wave your flat hand parallel to the ground...back yard...well anyway, we all love spending the afternoons on the deck, playing in the sand, swinging on the swing, and just simply hanging out. We are glad to be home!
We came home from the splint clinic at 330, Sadie was fitted for Polly Wogs, (aka shoe inserts) also made by Cascade the same company that makes AFOs. Pretty neat concept, and I don't have to buy anymore cheap ones from the pharmacy! Plus insurance pays for it and that's aways a bonus!
I love sunny afternoons when it's in the low 70s.
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Dinner

Looking guilty after she dumped a cup of cooked rice all over her the table and put a handful down her dress...so cute anyway. Thank goodness for the dog!
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Tree

You can see how big the top of the tree is compared to the fence and bike in the background.
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tree

Ironically, as I pressed the send button on that last blog post, thetop of our tree fell half way down the tree and scared the crap outta me! Tree guys came out to take the huge piece out this afternoon.Having the whole tree removed next week!

Tree

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terrible 2s

So, I took Sadie to the doctor this morning after feeling whole heartedly that she was suffering from something...an ear infection, sore throat, sinuses, allergies, something.  She was off the charts fussy yesterday and this morning had a complete meltdown over nothing.  She cried uncontrolably and without me being able to sooth her for over an hour.  After her tears and mine; and seeing Shelbi standing there looking at both of us like we are crazy, I called the doctor and made an appointment.  I was sure she'd find something.  Afterall, Shelbi is on an antibiotic for an ear and sinus infection, I've also been on amoxicillin for the same.  It seemed obvious that Sadie probably had the same.

 

After a thorough evaluation, she is a completely healthy child.  The conclusion....Sadie is developmentally at 24-28months old..."Terrible Twos."

 

After pointing out that I've had a perfectly tempered loving child for the past 5 years and that I pretty much avoided (so far) the 2-3 year old temper tantrums with Shelbi, that the conclusion is that Sadie is struggling to tell us what she wants and then compounded by her disablilites...she is having tantrums.

 

Well this got me thinking on the way home, as I was debated to drink a beer with lunch or take a "pill" instead....that if Sadie has been on the 50%-60% developomental track for the past 5 years....Does that lead me to conclude she might possibly be in the terrible 2's -3's stage for 2-3 years????????  oh my gosh the thought of that really makes me want medication.  That might be an overstatement because I'm pretty level headed when handling Sadie.  My husband; on the other hand, well I kinda lose my head with him =)

 

Well, we are home now and as I type this post, Sadie is running around the deck soaking wet in a t-shirt and pajama pants (without a diaper) playing in the 6 foot plastic pool filled about 2 inches with cold water.....AND she is happy as can be and seems to be for now at least, back to her normal self.  Thank Goodness.

 

Oh, Shelbi when to Granny's today for some quiet one on one without Sadie.  She deserves a break too.  I need to always remember that. 

Sadie's Birthday

Weight

Sadies lost weight. Back to pushing food
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Kindergarten

I was quick to jump all over the idea of keeping Sadie in special ed preschool one more year. She should start Kindergarten in September, but she is making so much progress in the Special Education Preschool "Reverse Mainstreaming" Inclusion class. Sadie's class has 6 special ed students and 6 regular ed students.  She has really picked up on hand holding, following simple directions, and her receptive language has exploded.  She will even push her arm through the sleeve of her shirt when I hold the shirt open for her.  She also lifts her leg up to put it in her pants when we stand behind her and support her. She even took her coat off one day last week when we came home and put it next to the closet. Although she requires a lot of prompting, she is at least responding to one step directions. 

 

She is such a social little girl and we are so thankful that the school system offered this opportunity for her to be with her peers in an inclusive environment.  Kindergarten is such a big transition for any child, but more especially for a child with special needs.  The teacher said she'd probably be in a self contained class if she went into Kindergarten.  I hope she can always be included with all children, but I also know that sometime what we want isn't always what's best.

 

While, I did jump all over the idea of her being in preschool one more year, it really hit home for me when I got the call last week for her tri-annual evaluation for special education services in preparation for Kindergarten.  I told the coordinator that we decided to hold her back and she confirmed this decision with the teachers.  And so, next week we with meet with everyone again for her 3 year evaluation of services, and we will tell them how happy we are that Sadie is in inclusion.  With a heavy heart, I know my daughter will stay back instead of moving on like her same age regular ed peers  I know it's what's best, but it is just another jab to our life that we live in Holland, NOT Italy.

Busy day!

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New stroller

Sadie got her new Maclaren stroller last week and today was the perfect day to walk on the boardwalk. Of course, Shelbi rode her tricycle too! (I was trying to wear her out so she'd take a good nap heee heee)
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more in stroller.jpg

Finally got sadie to push "more" on her "GoTalk9" by zooming her through the house in her new stroller! Ha ha!
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sucking on wipes

ok this might be the most bizarre thing...does anyone else have children that just love to suck on wipes, or is that just one of those quirky things Sadie likes to do? She could walk around all day with one. now she will even wring it out on the floor and splash all her spit is squeezed out. It is getting a little gross. I try the chewy/teether toys(she likes those too), but she always goes nuts for a wipe as soon as she sees the box. Even the other day, I left the toilet paper out, which usually has to stay up in the cabinet, she had literally taken a bite out of the side of the tp roll.



On another note, a friend posted this link on facebook, it brought tears to my eyes and pain to my heart, it brought back feelings of pain, feelings of crying uncontrollably, feelings of loss. Her story started much like mine...writing a blog...this entry describes the birth day of her daughter with Down Syndrome. It is emotionally moving. For all that have not journeyed to Holland, but might dare to visit for just a few moments, please read her story. You just might feel for a moment what a mother or father might feel when they discover their child has Down Syndrome...http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

Low Tech Assistive Technology

Life

Sunday! A cup of Coffee! Shelbi watching Annie on youtube (because the disc is scratched beyond playing)! Daddy on the couch! Sadie's babbling in the background trying so hard to tell us what the heck she is thinking!
We had a family luncheon yesterday for our GREAT GREAT Aunt Thelma who was married to GREAT GREAT Uncle Bill (Bill's name sake).
Sandwiches, potato salad, chips, and tea...I wish all parties could be that simple and easy. When you get those ladies together, everyone is chatting and catching up. They are all southern gals and chatting is definitely in their blood.
As for us, Sadie brought home that yucky throat virus 2 weeks ago, which was then passed on to Shelbi, which has since passed on to Bill and me. (So we limited our kissing/hugging with the family yesterday). Another day with a preschooler in the house...she's always bringing home germs.
Funny to think, before I had my own children, I said getting germs was good for them because it would make them immune for the future, but now...geezzzzz I would be happy if we all would stay healthy for at least a few weeks...you don't need immunity if you don't catch the germs right? If we could just get Sadie past the stage of putting EVERYTHING in her mouth. It is what it is!!!!!!!!

Echo Under Anesthesia

I feel terrible for not posting sooner, but its been a crazy week.
Sadie was put under anesthesia for the Echo on her heart. The cardiologist was able to get a good look by doing it externally. Although, we had been prepped that he might need to do a Trach echo down her throat to get a better look if needed. He didn't have to do it.
The ASD (atrium septial defect) hole is still 4mm wide, which he described to be small. Nearly half a centimeter sounds pretty big to me, but hey, I didn't go to Cardiology school.
He said that the small size of the hole didn't warrant putting her through a catheterization procedure to place the device in to close the hole. Great News!
We arrived at the hospital at 6am and were home by 1015am. Sadie was back to normal without any major side effects from the anesthesia. She was just a little groggy.
The other crazy part of the week was finding out that we might be losing her Medicaid consumer services because of our state's budget cuts. So I went to the General Assembly for the day and have spent every other second of my days writing and calling Senators, Delegates, and our new Governor asking that they not cut programs for people with developmental disabilities.
Oh, to top it off, Shelbi got that yucky fever throat virus on Wednesday to Friday, so she went to the doctor also...she's all better now though!
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Literally

Sadie just looked at me while she was holding the handle to the Leap Frog shopping cart. I asked her, "Are you going grocery shopping?".
She moved around to the front of the child size cart and sat on top like she was getting in the cart for me to push. So cute!
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Pepper and Shampoo and the "Procedure"

It's gotta be the funny things that you just can't do anything about that get me through this. A few weeks ago, Sadie was able to squeeze her skinny long arm into the "child proofed" lock on the cabinet and grab the pepper box. Now, anyone who knows me well enough will tell you that I'm slightly neurotic about keeping at least one eye on my children at all times. Well, Sadie seems to always find a way to get into what ever is around that we just don't want her to touch. In that one second, before I could grab it from her, she was able to empty a box of pepper in the middle of her lap, sitting in the "W" sit and poof, pepper dust was everywhere. What's a mom to do? I just sighed and said, "Oh Sadie." I picked her up and stripped her exactly where she was and redressed her. Then I went back and swept the emptied box of pepper. As I'm sweeping that last little bit of dust of the floor, I hear a squish squish sound. You know, the sound of the very last squeeze of shampoo out of the very empty bottle. Again, only a minute could have gone by and I am so good about putting the shampoo high in the shower, just for those exact moments when Sadie is trying to get into mischief. I run to the bathroom (all 5 feet away from the kitchen) and there she sits in her newly changed outfit in the bottom of the tub, COVERED in strawberry shampoo. On the bright side, she and the next load of laundry, including the pepper covered clothes smelled like strawberries. Oh, I sigh and smile...I love her so much

I'm dreading tomorrow, and procrastinating going to bed because I know it will make tomorrow morning come just that much faster. If you have no idea what I'm talking about, see the link about the cardiology appointment...that's tomorrow...the "procedure."

Sick with worry

I'm having that sick feeling of dread and worry about tomorrow's procedure.
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GoTalk 9

We got it!!!
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Cute in a hat

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2010 Snow Storm

Oops, just realized I haven't posted in quite awhile. Something fun to post about...the snow. We got nearly 10-12 inches from the storm. We hardly ever get snow, and while it's fun to look at and look forward to, I don't look forward to being cooped up in the house for 3 days. And, we just got the phone call the school is cancelled tomorrow too. We ventured out in it yesterday for a little bit, not too long though...it is just too cold. Here are some photos and as Memaw said, "we made some memories."

Cornmeal Tub

I have cornmeal in a large tub for the girls to play "sand" inside (got the idea from a book). When I got home from picking Sadie up from school, I put both girls in and went back to the car to get other stuff. I forgot I left the tub of cornmeal in the middle of the floor. I couldn't have been outside 30 seconds and Sadie dumped the whole thing out alllll over. I could only laugh and get the camera! 

New Photos

Christmas morning
Telling Santa what she wants for Christmas after storytime at the Library

Christmas morning

Strong

And yet, I found I could survive. I was alert, I felt the pain--the aching loss that radiated out from my limbs and head--but it was manageable. I could live through it. It didn't feel like the pain had weakened over time, rather that I'd grown strong enough to bear it. ~ New Moon by Stephanie Meyer
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Road Trip

We rang in the New Year at our friends' house in NC with only Shelbi. We needed some space and we felt like Shelbi needed some also, so we left Sadie home with a babysitter. Shelbi had a wonderful time playing with all the other kids and it warmed my heart to see her in that environment. She played super hard!
Sadie had fun too with her attendant. One exception, Sadie had a lot of blow out diapers while we were gone. Sorry Nicole! But either way we had a wonderful time in NC! Thanks to our friends.
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