Thursday, February 11, 2010

I Never Claimed She Would Be Academically Equal To Her Peers! :(

Today I am a little sad. Disappointed. Frustrated. Concerned. Irritated. SAD.... As I was dropping off Sadie for school I stuck my head into her general education mainstreaming class and asked her teacher what time the Valentine's party was and if I needed to send Valentine's for Sadie. During the conversation the teacher asked how Sadie was after the last couple of weeks and all the medical things we were dealing with.

Here's where I need to give some background. This particular teacher was not my first choice (because she has not taught K that long and has never taught anyone with ds) but has surprised me as being the perfect fit for Sadie. She is organized, calm, has a quiet classroom (that helps Sadie hear), and has been for the most part super supportive of Sadie. During her IEP I was worried because she seemed to underestimate Sadie's abilities and offered to have Sadie join them "during a non-academic" time when Sadie had an option to "just play in the playhouse" everyday. I knew Sadie would surprise her and show her she really is a smart-cookie!

Back to our conversation: The teacher told me how impressed she was with Sadie in the last few weeks. Here's basically the conversation, "She has been opening books and enjoying them! She even scribbled on the paper when we did a pencil/paper activity. Yesterday, she repeated some of our sightwords during class.... I was so happy". WHAT THE CRAP!!!

I repeat... WHAT THE CRAP!! Sadie has been "reading- looking at pictures and repeating or making up stories, even tracking words from left to right" FOREVER. She has issues with fine motor... but she can write several letters and draws pictures. She knows most of her letters and all of her sounds. She even can read about 8 sight words all by herself. WHAT THE CRAP!!

All this time in the classroom with Sadie and she still thinks of her as a toddler. I tried to make light of the situation and said, "Well then, I guess she will be ready for Kindergarten next year. haha ." You know what she said??? "Not without an aide... I could never teach her and attend to the rest of my class."

No Duh!! I would never put my kid in a general education class without an aide. So, again, I try to make light of the situation, "I'm glad you think so... your recommendation will help me get an aide when I ask at her IEP. Of course I would never send her to typical classroom without a one-on-one aide" For heaven's sake... she is a runner!!

All these months and she still has no clue Sadie is a Superstar. This is what really pissed me off. In front of several parents she told me, "I've been making a list for the IEP of all the things she can do; but there is a list of a lot she can't do also".

Back off lady cause I'm gonna come unglued!!! My response (of course while showing great body language- body turning, arms folded, firm lips), "I never said Sadie would be academically with her peers; but she IS benefiting from being in your class."

Uh oh.... the teacher took a step towards me, glanced around, and looked me in the eyes and her face soften. "I'm sorry Mrs. Teague. I didn't mean to sound so harsh... I shouldn't have talked to you out here... maybe we can talk later."

Now tears in my eyes, "Yes that would be more appropriate!"

My husband told me to just think about it for a day or so. He doesn't think it was all that bad. So, today... I'm just going to cry about it. I wish she knew the real Sadie. I wish she could see her potential. I wish she could see the benefits of having her in general ed. I wish she was one of her advocates. I wish she knew how hard and embarrassing having her say those things infront of other parents was.

I wish there was a perfect placement for MY PERFECT CHILD!!

Tuesday, February 9, 2010

Took the Words Right Out of My Mouth... Welcome to Holland Nella Cordelia and Family!!!

My memories of the day Sadie was born remind me of a flashback on a TV show. The whole experience is kinda blurry and the voices seem distant- like you are looking through a long tube straining to hear the conversations. We did not know until birth that she would come with something extra. I'm grateful for that! Scott would have loved to know earlier, collected information, prepared himself. I'm too much of a worrier. After hours of laboring and bringing a child into the world I believe a mother has no choice but to understand the miracle of life and it's purpose.

Last night someone posted the link to this beautiful story about a mother's recent birth experience. It is full of raw and new feelings and reminds me soooo much of those first few days of Sadie's life. I don't want to spoil it; but I am especially grateful for her honesty and account of the first few moments after they placed her sweet baby on her chest. Warning......... be prepared for a good cry!

Nella Cordelia's Story

Monday, February 8, 2010

Disneyland... in the rain!!!

I should sooooo save this one for Wordless Wednesday!!!! Yes, I am the proud mother of that crazy girl... Hannieo :)

Hannah and Linsey chasing ducks down Main Street :)

This is all four girls on California Screamin. Kiersten thought if they went on a fast ride that went upside down they might dry out.... Instead they were pelted with rain!!

Kiersten very wet!

Kiersten and Kimmi

Linsey and Hannah

Sunday, February 7, 2010

Sunday Thought

For so long I have fought having my identity being so closely linked to having a child with special needs. I dreaded being known as "the family with the little girl with down syndrome". I would much rather be known as "the cool family with the four girls and the awesome mom and groovy dad :)" As much as I have fought it, I have finally realized that Down Syndrome has become a huge part of our identity. It has shaped our values as a family, how we function as a family, and how I look at parenting. It affects how much energy I have, how much patience I have, and what my priorites are. That being said, I wouldn't change our family for the world (that's actually a lie... I would change the teenage bickering, the fighting over clothes, the hormones, and Sadie's incredible stubborness!.

We have been blessed to have Sadie in our family. She has taught us about love, compassion, and the gift of life. We are also lucky to understand Sadie's eternal role and the love Heavenly Father has for her. The following is a poem I found on another blog a couple of weeks ago that explains so of our beliefs.

A meeting was held quite far from Earth
"It's time again for another birth,"
Said the angels to the Lord above,
"This special child will need much love."
His progress may seem very slow
Accomplishments he may not show
And he'll require extra care
From the folks he meets way down there.
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped.
So let's be careful where he's sent
We want his life to be content
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play
But with this child sent from above
Come stronger faith and richer love.
And soon they'll know the privilege given
In caring for this gift from heaven
Their precious charge, so meek and mild,
Is heaven's very special child.

~Edna Massimilla

Saturday, February 6, 2010

Lesson learned again... maybe this time I will remember!!

I've been a little quiet this week in blogland. Alot has happened in the short span of a week and to say the least it was a bit stressful. However, I was blessed to relearn a lesson that I know I will have to remember often as a mom of a little girl sportin' an extra chromosome. Actually, this lesson is one of great value as a mom to any of my four girls :)

Here's just one of our wild adventures from last week: On Thursday I took Sadie out of school early to go to the Opthamologist. On my way to the appointment we dropped Kiersten off at her Spanish class and headed back to the freeway. The road was pretty empty and I was going through a light. Out of nowhere a couple teenage boys (who were most likely more interested in their loud music instead of following the road signs) turned into me. I have no idea how we escaped an accident, I actually had to stick my head out the window to check to see if they hit us! Anyway, even though they did not hit us Sadie was thrown around a little in her carseat. She started screaming and complaining about her head. We drove straight to the Dr. and while trying to get to his waiting room she wanted to get down and walk up the steps. She looked like a drunk sailor... she couldn't walk up the steps and had a hard time controlling her legs. The Dr. evaluated her for any neurological injuries and it was decided that she had reverse whiplash.

After getting her first prescription for glasses :) we picked up Kiersten and drove home. Sadie blessed us with crying and complaining again the whole way home (not usual). Minutes after I arrived home her pediatrician called and told me her xrays taken on Monday showed some instability of her neck (AAI) and said she would need an MRI right away to measure more accurately. I shared our "near miss" with the Dr. and she ordered an MRI for that night--- without sedation! Needless to say, that was a disaster and we had to reschedule the sedated MRI for the following Tuesday. Until we knew more about the degree of instability she would be on limited physical activity. First words out of the Dr's mouth, "NO BOUNCE HOUSES". What??? This is Sadie we are talking about. The girl who talks daily of her bounce house party (last June) and who rolls around the floor doing her own lyrical solos :) limited activity is not something I would welcome with this little girl!

Let me give you a little background on the whole AAI thing. Kids with Down Syndrome often have problems with their loose ligaments and AAI is actually somewhat common (10-30%) with only 1% being symptomatic. Unless the space is big enough or unless they are symptomatic the usual course of treatment is monitoring and limited activity. If there is a chance of spinal cord compression or nerve damage they will fuse the spine together with metal coverings that are bolted in the spine. Sadie has actually hurt her neck several times in the last six months and although we were following up with some regular screening... we were worried about AAI because of her ???symptoms???. So, I was a basketcase. On the good end... she would have limited activity--- on the severe end... she would have major surgery. CRAP!!

I hate this part of down syndrome. The part that you are always ruling out or treating the MANY possible diseases, disorders, conditions, etc. that come with the extra chromosome. I hate the "time bomb" that I am always worried will go off!

That's when I found this website. about a sweet little girl, Eliza, and her beautiful family. Eliza's body is rapidly deteriorating. She is blind, can not eat, doesn't have any control of her muscles.... she is trapped in her body. As I looked through her website I didn't see her family getting ready to scream and cry because they don't have control of their daughters health. I didn't see pity and frustration. I didn't see them consumed with all the worries of tomorrow.... I'm sure there are many tears shed and sad moments.... but their website was full of sweet stories that showed me they were living for today! Their family spends today celebrating and enjoying their time with their sweet little girl. They read to her, sing to her, and enjoy reading about how Eliza inspires others to serve.

The night before Sadie's MRI, while reading through Eliza's Blog, I was reminded to put aside tomorrow's worries and enjoy today! Down Syndrome is like a grab bag of medical surprises. Sadie will always have routine screenings and countless Dr. appointments. I can't promise that I won't be worried; but I hope I will put things into perspective. I will try to live life like Eliza's family.... enjoy today and not fill my mind or thoughts with worries about tomorrow!

P.S. Sadie's MRI came back good... she only has mild AAI and will have to have xrays every two to three years. That means no diving, no tackle football, and no gymnastics. I am happy to report that Sadie will still be able to enjoy jump houses (by herself)!!!