Thursday, February 19, 2009

What's the point?

There are certain things that I hate about Down syndrome--IEP's and testing are just a few of them! Morgan's kindergarten teacher asked me if I could come to Morgan's testing because she had tried and Morgan wouldn't talk or answer anything for her. She thought Morgan might be more cooperative if I was in the room with her. I'm not sure what this test was for but I think it had something to do with her placement for next year. The teacher started off the test by letting me know she was going to give her the preschool test and then we could see about the kindergarten test depending on how she did on the preK one. The testing was done in a separate room away from the classroom. Morgan knew right away that something different was going on and decided to shut down. She whispered some things to me but otherwise she kept her eyes on the floor, thumb in her mouth and refused to play along with the test. The test was ridiculous--colors, shapes, numbers (1-10), capital and lower case letters and sounds. All things that Morgan has known since she was 3. It took THREE hours--over two different times of me going into her classroom-- to do this test and we never even got to the lower case letters! I was seriously raging inside during the test! I was so frustrated that Morgan wouldn't cooperate and can be so stubborn. I am a control freak and it drives me crazy that there isn't anything I can do to get her to cooperate and SHINE! But the biggest frustration for me was trying to understand why they even had to do this test. Do they not believe me? How would it benefit me to exaggerate her abilities to her teacher? I kept asking the teacher if I could do these things at home and video it so she could see how easily she can do these things when she doesn't feel threatened. She laughed and said that she knew that Morgan knows all of this stuff but she still has to test her. Why? My feelings changed from anger to sadness as I drove home. There are days that I just wish I didn't have to deal with any of this. I feel so inadequate to be the one that has to make all of the big decisions for her. Goals on her IEPs. Full inclusion or cluster classroom setting? All I can do is hope that I am making the right choices and leading her in the right direction and remember that some days are a lot better than others!

17 comments:

COOLWHIP said...

I don't get it either. Somedays I do, somedays I don't. Somedays I am more willing than others.
How on earth do you balance ALL of this. 5 other kids, a home, callings....

heather said...

Coolwhip--
You tell me how YOU balance it all. You are in the same boat (or at least will be in 7 more months!) It is hard to balance it all. I definitely feel like Morgan gets the most individual, one-on-one mother attention in the house!

Heidi Reid said...

Heather,

You are amazing! All I know is that the choicest spirits, Morgan, only get to go to the most incredible Moms, Dads and families! You are an inspiration. And yet, it is us who learn the most in having them in our lives. My family learned so much by having my uncle in our lives and caring for him. Love your blog!

Heidi Gillespie Reid

Cheri said...
This comment has been removed by the author.
Cheri said...

Heather,
I didn't know you well in school and I wouldn't say I know you to well now but what I do know about you is that you are a great mom. You inspire people. You speak from your heart and people listen. Which is a great gift.. I don't know what to say about balancing your life but if I could make an observation- it looks like you do such a great job. You and Gavin seem to do so much to express your love and devotion to your children. I learn from you even if it's from a distance. thanks for posting this today..

Tausha said...

Heather - Sorry you had to deal with all of that. Sam is only 6 1/2 mths and I worry about it already. It's funny how our kids are so stubborn, I see it in Sam already. Even when his PT comes he clams up and doesn't do much and when she leaves it's like he is a completely different person. I may be crying on your shoulder once Sam gets to Morgan's point in life. But, just remember you are Morgan's Mom and you have intuition and you will make the best decisions for her I have no doubt.

Kiki said...

I completely agree with you-the testing is a hard thing and we are only beginning to see that with Bree! I am amazed at what you acomplish with your family and with Morgan in particular-I have never met you in person and yet I totally look up to you and want to be like you. I hope Bree is as well off in a few years as Morgan seems to be!

Scarehaircare said...

Heather - make that video. Update on the same video every 4-6 months. Burn copies to take to every IEP meeting. Morgan can do it. You know it and the teacher knows it. It's definitely in your interest and in Morgan's interest to make sure everyone else knows it.

I struggle with the same frustrations. The same fears. I have no doubt that you are doing great things with Morgan and she is blessed to be in your family just as much as you are blessed to have her.

{{{hugs}}}

Aaron and Lisa said...

I am so sorry. I am always on the other end so it really helps to hear the parent perspective. I know that doesn't help you, but you are such a wonderful mother to all your kids especially Morgan. I wish things were different sometimes with special ed "stuff". I am just grateful that such a sweet little spirit was given such a good mommy to love her and worry about her. I wonder sometimes how you do it all. I am completely freaked out as we wait for #2. I asked Aaron one night if I was going to be able to love them both the same. I don't know the answer, but someone once told me, "we all get what we need". I think how blessed your other children are to have Morgan in their lives too. They have such an opportunity to learn love and patience and selflessness. I just love y'all. Good luck with everything. Wish there was something I could do to help. :)

karol said...

I just want to offer my applause to you for the outstanding mother you are!! Any direction you take Morgan in has got to be the best – because she has YOU for a mother!
And I agree with the comment above, make the video. Luv You!

Brittany said...

I can only imagine the frustration. I told Jamie that I just don't know how you and Gavin do it sometimes! I think people say that a lot about you guys, and that is a compliment. You are doing something that not everyone can do and you are doing it well. Grace has been asking when Mia can come play again too, so if you ever need me just let me know!

kellyclay said...

Heather,

First of all I just want to say how sorry I am. I know first hand how hard it is to deal with IEP's and testing and to have that wonderful bright/briliant child be stubborn during said test/IEP.

you are an Amazing Mother and Morgan is so blessed to have you and Gavin as her parents. you are such an amazing example to me and I am so thankful that you are my friend.

DKAZ said...

I agree with SHC...make the video. This all sounds so frustrating. Afterall, what is the main objective...to prove she CAN'T do it!?
You are doing a GREAT job. Don't be so hard on yourself. It's amazing to see everything you are able to do and still manage to look great and completely sane! :)

Lily said...

Hang in there Heather!
You are doing a great job and all those emotions are very natural. I agree and have heard it in several IEP trainings that you should share information about your child with the teacher and any other staff that Morgan deals with. Share her strenghts and weakness so they know what to avoid and what to pursue. Not that it will happen, but you know you are doing your part! Make the video! (Great idea Carrie)
The other thing to remember is being in the same school district as Lily I know that Morgan is most likely in a classroom with 1 teacher, no aides, except for Morgan's and anywhere from 20 - 30 children. Not the best learing enviroment for our children. I had Lily mainstreamed until the beginning of 3rd grade, she did very well socially and was with the majority of the kids when it came to classwork, but then it happened... The other kids started passing her by, she was getting frustrated, her teacher (first of all first year of teaching!) had her hands full over 30 students and the resource teacher wasn't willing to modify Lily's work (not enough time in her schedule - yeah right). I could have fought and won. I knew and have worked with both the state and Granite person in charge of special needs so I contacted them both, not because I wanted Lily to stay in that school, but because after the school told me they didn't want her anymore and she needed to go to a self-contained class, they wanted to go through 6 weeks of testing to see if she qualified for the self-contained class!!!!! After Jeff and I visited the self-contained class, met the teacher, took Lily to sit in on a couple of classes, we wanted her moved and moved now. She moved to the other school within a week. WE ALL LOVED IT!
She took off with math, which they were barely working on with Lily, she took off in reading, they actually let her use (touch) the computer in the classroom without assistance and she knew how to do it!
This year she is at a different school with the same group of students and the same teacher that she would have had (the one draw back is that the district moves these classes around) but, again Lily is doing so well! I walked into her classroom to get her one day and the room was filled with "buddies" students from other classrooms helping out. Lily's classroom has 13 students 1 teacher and 2 full time aides. The aides are reading and math specialists. Lily learns reading from the EdMark program which has been found the best way for her to learn , other kids learn differently so they use their program. The teacher actually has to adjust her way of teaching.
So, anyway, sorry about the novel. But what I am trying to say is do what is right for Morgan and your family!!!!! Investagate all the options. Stand up for her rights, but make sure you are standing up for her and her best interest and not standing up for what's been drilled into you about mainstreaming. I've seen both sides, I wouldn't have traded those k-2 years being mainstreamed, but I am very happy with the progress Lily has made.

Sweet Angel said...

Don't you just love Zoey. I notice you had 6 kids in about 12 years, That is my trademark too. My oldest is 27 and my youngest is 15 and Kristen is is the third. Prayers are definately what is getting us through this so thank You.

Michelle said...

Heather- so glad you left a comment on my blog...so good to meet another friend and one that isn't too far away! :) Morgan is beautiful as are your other kids...6...you must have a buys, but fun home! We'll have to get in touch...here is my email: mtherklesen@yahoo.com

JaybirdNWA said...

I agree that it is sad. Sad that our scoiety seems to caters to one type of child and the others have to struggle for what they get. But at the end of the day, you know that Morgan knows her material.