Mama vs School... Is it time??

When do you think it is time to blow the whistle on the school when they are not following an IEP?  I understand that it is illegal not to follow the IEP; but at what point do you really pull the 'you're not in compliance with this legal document' card?  Advice, opinions, and thoughts are greatly appreciated.

I found out yesterday, through casual conversation with Sadie's aide, that there are a few issues with this year's schedule.  First, I have to say that Sadie has the BEST aide on the planet.  She is wonderful, kind, works hard, and takes the extra steps to help Sadie with inclusion.  Her aide is going to school to become a teacher and you can tell that she loves to teach and really cares about the kids: especially Sadie.  Also, the reason Sadie has an aide is because she is a runner.  The school is an open campus and there have been two different times she ran into the parking lot (and once more she was released by a teacher and she wandered around trying to find me in the parking lot).  This parking lot is located next to a very busy street. 

So here's the scoop:

1) Her aide does not stay with her during lunch (because this is her break time) and there have been two 4th graders assigned to walk Sadie from the lunch area to the playground. Nobody is assigned to making sure she stays on the playground and doesn't run off.

2) Her aide drops her off for resource then goes back into the general ed. classroom to help the teacher out.   (My thought is this would be a great time for her aide to see how to modify her work and follow through with what she is learning on her level)

3) Her teacher does not modify her work- the aide does. 

4) Because of the mix of children in the school this year, Sadie does not go to Math 5 times a week for 30 minutes a day as stated in her IEP.  She only goes 3 times a week- which means she is shorted 60 mins a week or 36 hours a year.  Considering the fact that she is already behind and it takes her longer to learn, this seems like a huge disservice. 

I was able to briefly talk to the resource teacher to ask her what was best for Sadie, but she seemed worried about making sure the IEP was honored and said that she may have to put Sadie in class with older kids when higher math is being taught.  Sadie is really enjoying and thriving in school this year and I would hate to enforce the IEP just to put her in a class where it stresses her out because the material is beyond her level and the kids are too old.

Please... any thoughts?  I am not a complainer; but I feel like 36 hours less of math is huge!

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...

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. http://www.elizaswish.org/ 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)!!!

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."

Happy Happy 3rd Birthday Sadie Bug!!

Here's a post from downsyn I made on the morning of Sadie's Birthday...

"Sadie's 3rd Birthday!!! Wow!! I can't believe it's been three years on this journey. Your first birthday was filled with memories of the day you were born and a little sadness that you had already finished your first year of life- time goes so fast! The second year we celebrated that you were healthy and thriving and that we found the right dr's that could find a way to save your life. Today, on your third birthday.. I am busy trying to get ready for my lesson, make food for Father's day and I checked in on downsyn and remembered- it's your birthday! Not that we didn't celebrate at Rainforest Cafe and Build a Bear last night. But, I am struck with the absence of sadness or overwhelming thankfulness for the medical community. Today is just a regular day.. and you are just a regular kid. An awesome, cute, funny, smart, beautiful child of God. I thank Heavenly Father everyday, not just on your birthday- but everyday, that you choose us. I love you my little Sadie Bug. Thank you completing our family!!!"

And here is another the next day...

"I made it through her birthday with only one slight breakdown. During the sacrament hymn at church I started to think of everything we've been through the past three years- all the hospital stays and illnesses. I suggest during a birthday you concentrate on the accomplishments not the things you struggled with and can not change. My little girl is a big girl now!! When you ask her how old she is- she always points her two index fingers and says two. We've been trying to teach her- three. So everytime we ask her how old she is, she says two, we say three, and she then says four!! It will come Although, I'm not sure I want her to know- we aren't going to get her Disneyland pass until ours needs to be renewed LOL"