Monday, June 18, 2007

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."

Our first day on our own

Today was the first day without ICEC (group therapy) and I was bored!! I let Sadie sleep in and we read, played some hide-and-go-seek, read, watched TV, read and goofed around. Boy was I happy when Scott asked for a ride to drop off his car. Tomorrow I want to take Sadie to look at her new classroom so that should help until it's time to pick up Kiersten from min. day. All the girls get out on Wednesday and I know the rest of our summer is packed. But, I can't help but feel a great sense of disappointment because at least therapy had a purpose and great rewards. Laundry, dishes, and taxi driving is important- but doesn't give the kind of satisfaction getting down on the floor and working with therapist to develop Sadie's skills. I know I just need some time to adjust, or as my husband would argue, time to figure out what to fill that time with! Wish me luck- and the rest of my family- because a family is only as happy as it's mom :)

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"

Friday, June 15, 2007

My first blog

Photo Sharing and Video Hosting at Photobucket

So, I decided I'm going to try this. Hopefully blogging will help me with family history and journaling. I type much faster than writing and hopefully there is spellcheck.

Yesterday was a big day for Kiersten. She did a 5 minute oral presentation in English. Big accomplishment for a shy girl. She also was voted "7th Grade Dancer of the Year" by her teammates. The best part- they all cheered and clapped. It has been a rough year full of great victories for her. Also, this morning besides an award for High Honors, she recieved an award for Excellent Citizenship from the visual arts program. Her teacher, Mr. Bishop, made a big deal about how she is the most kind, most curtious kid he has EVER had in his 18 years of teaching. That when he first started the year he thought it was a joke that a jr. high kid would say "thank you" everyday. He said he made a point to watch her carefully and realized she was "for real!" Then he bowed to her and told everyone to clap for "one awesome girl!!!!"

Today is Sadie's last day in Early Start Preschool. She turns 3 on Sunday and I have mixed feelings about it all. I can't believe it's been 3 years. It's been quite the journey. I'll write more on that later. We are off to watch them sing "Happy Birthday" and wish her well. I'll post pictures later.

We're back from ICEC and it wasn't as hard to leave as I thought. Probably because we will be back next Thursday and a couple more times for make-ups. I once got a little teary eyed when they sang, "butterfly". It reminded me of the story "Parable of the Butterfly". I'll find it later and post it... but it shows us how even though it is hard to watch our kids struggle and work hard, it is necessary for growth. It takes hard work to become a beautiful butterfly. My little Sadie is sprouting wings before my eyes- she is on her way to becoming a beautiful butterfly!!!