I've been putting off writing this post now for over a month.
Maybe it's because putting it off delays the inevitable. But I guess I can't hide the truth any more.
Kaitlyn will be riding the short bus to school soon. Now I don't mean this as derogatory or anything. It's funny, our community school district has these smaller busses that take kids to and from special needs school and it wasn't until recently that I actually realized that these were the "short bus" that are so crudely spoken of by others when "jesting" about special needs children.
My daughter is a special needs child.
As she gets older and I compare her to other 3 years olds it's been slowly more and more obvious to me how delayed she is.
Let me back up a bit.
A number of weeks ago I asked the teacher for one of Kaitlyn's new Pragmatic Speech programs if she had some time as I'd like to talk to her now that Kaitlyn had been in her class for a month. She actually said to me that she'd been wanting to meet with me also.
Briefly, she indicated that there was a lot more going on with Kaitlyn than was orignally diagnosed by the district. She tested so well in a quiet one-on-one environemnt, but after a month of watching her, the teacher noted many delays in many areas.
- Gross Motor delays
- Fine Motor delays
- Flirting from object to object/inability to be still
- Not looking at eyes
- Gets super wound up if the envromnent is hectic (this is probably the HARDEST of all the issues to deal with)
- Prefers adults to her peers/doesn't interact with other children
- clumsy/stumbles
- Shutter-steps her feet
- Repeating words over and over even though she has ability to speak sentences
- Hyper focusing on objects for long periods of time
- High pain tolerance
- Seeks out stimulation from objects (ie rolling on floor, couches)/ flops
The teacher said "I know Kaitlyn is really bright and excels in a lot of areas, but her delays do not allow her to show how smart she is".
Strangely, I felt some happiness as I felt validated finally that my "gut feelings" that I've been writing about weren't off. But I also felt really sad that I wasn't just being a "worry-wort" parent.
After I left, my mood totally tanked. No more happiness. Here are some of my feeling-sorry-for-myself rantings, but once again, I felt like my daughter was never going to be able to escape the horrible affects from her extreme prematurity. From my having an amnio. Yes, there's that fact. Now, don't get me wrong, I don't carry this horrible guilt with me. But I look at that event as "THE EVENT". My daughters are forever paying the price of that event.
I shouldn't be complaining. She is so much better off than other micro preemies I know. She's so much better off than so many of my new (new since my life changed forever) friend's disabled children.
But, damn it, I feel sorry for her and I feel sorry for myself. This sucks.
The teacher felt that Kaitlyn would do much better in a developmental preschool 5 days a week and that she should no longer be in main-stream preschool. I asked if she couldn't just go to her regular school 1 day a week. The teacher really indicated that the best way for Kaitlyn to improve would be consistency, 5 days a week with the same children, same teachers, who were really focused on her delays.
I know that the 2 day a week 1.5 hour speach programatic proram that she's in now is really good for her. My instict told me that this teacher was right on. She told met hat she's known in the district for doing a really good job of assessing children to help them get the care they need.
Yes, I'm happy that these issues are going to be addressed now. I feel very fortunate that I"m we are in an excellent school district with goals of helping our children enter main stream school at some point. This wasmy goal all along - to get her the help now as she's still young. But I'm still sad.
I was so sad to tell my preschool. This morning when I dropped her off I felt sad again. I really like my community preschool. I've bonded with a lot of moms there. (one has a special needs son who I've become really close with). Now my daughter will be riding the short bus.
14 comments:
One bit of unsolicited advice and take it for whatever it is worth. We were told almost the exact same thing about Josh a few years ago. So we took him out of his preschool for the 5 day a week dev. preschool. We this year have split his time bet typical preschool and the dev preschool. In the dev preschool he had no models. He have excelled in the typical preK where he is stagnant at the dev preK. Again just my 2 cents.
Good luck.
Christy
As a frequent visitor to your sight, I enjoy your reading your posts on your daughter. As a Special Education Teacher (the truth!) starting with specialized instruction (hopefully) will help her to make slow, but consistent gains in her upcoming years. As you have mentioned many times,she HAS made gains! She is bright and beautiful! Taking your daughter out of an environment that you and she are happy with is difficult. I hope that what ever decision you make, Kaitlyn continues to show continued progress.
Frequent visitor from MA
I love your honest posts about how you feel and handle being a mom to a special needs girl. I can only imagine...BUT I believe these are totally natural feelings of sadness you feel.
What a blessing to have all thi searly intervention to get Kaitlyn the help she needs.
She's come so far, you've done a good job!
You all are such a beautiful family. You are a wonderful mom to your children. I don't have children but I want one, however, I am 40 so my time is limited and my financial situation is not one where I can afford assisted fertility. Maybe my prayers will be answered some day. Thank you for your blog.
Kristie in Dallas
Liz,
I don't know how to comfort you in this situation but one true thing I know and it's very much TRUE that I feel every moment in our life is GOD HAS A PLAN FOR EACH INDIVIDUAL. I don't know why HE makes this plan but I know HE does and nobody in the earth has the ability to break that plan. My both children are full term, we don't drink, smoke or take drug. We made a plan before we had babies. We did every possible right thing from the day one until now but could not prevent having two special needs children.If you blame the gene there is no body in my or my husband family has even one percent disability, all children are hundred percent normal,if you blame prematurity they both were born full term,what I will blame these special needs children for?Only one thing comes to mind that GOD made this situation and in your amnio case so many women are doing amnio,their water don't break why it had to happen to you? WE CAN'T AVOID GOD'S WISH,only PRAY to HIM
and WORK HARD for your child.Don't feel bad.
Just wanted to let you know that I am thinking of you. Some truths are very hard to accept, and I admire your strength.
Dear Liz,
First of all, that picture is beautiful!! Look at your guys! Just awesome. And I love little Kaitlyn's pose ;)
I too appreciate your honesty. It is often hard for us to express that. You must know that you have alot of people who care about you and your family :)
I am sorry you are sad and you have every right to be.
I want to say I feel sorry for you and Kaitlyn too. Most people say "Don't pity me" and I don't pity you, but I do feel sorry for you. I feel sorry for Kaitlyn. I only want what's best for her too.
I hope the teacher is right and that she excels in this other class. I know it pains you to pull away from some really nice/good/caring people/parents.
Just sayin' "I'm here......... listening."
-Shannon in Austin
Dear Liz.
I am very sorry that your family has to go through this. But please try to focus on the bright side of things. Your daughter can stand, walk, speak and even the teacher (they are always very critical!) said she does well in a quiet one-on-one environment. You will all overcome these problems with a lot of hard work, just like you are slowly overcoming the feeding problems. Please try to remind yourself about the things your daughter excels in, don't dwell in the negatives. And also remember that usually when a younger sibling arrives, that's when children regress and are developmentally their worse! The important thing is that she is happy, whatever bus she may be riding at this time. All the best,
Anna
PS That is a great photo
hang in there.
i know from my experience a little (dark) humor is great. when daniel forst proudly boarded the short bus i reminded his mortified older sisters than karma is a bitch as they did make some unacceptable jokes in spite of mom's upbringing but daniel loved the bus and loved the special ed preschool he attended. in 1st grade now he is still 1/2 time in special ed and pull-out speech and adaptive PE with the remainder in a mainstream 1st grade class. he loves his classes and teachers and truly is the most populaar dude on his K-8 campus. the goal is to be 100% mainstreamed which the principal pushes big time. me i am just thrilled he is attending school and will continue to encourage, push and let everything happen according to his preemie time table...yes, it is still according to his time table even now.
do me a favor and take a picture of your wonderful girl as she boards the bus. she has come so far, and yes, she has miles to go, but she is moving forward...at her pace.
hugs to you!
First, the family portrait is wonderful Liz :-)
Second, I can say many things that you head knows but your heart is having a hard time with.. but Laura said something that you have to keep in mind - the goal is mainstream, and the goal with tubie tube was to eventually be without.. and its gone. I know that its hard to look far ahead into the future, but who is to say in 5 years that once she can verbalize much more than she does now, that she won't be riding the big bus :-)
Lots of hugs and thinking of you always,
K & P
Liz,
I don't think I've posted to your site yet but do follow it from time-to-time and am in the cp and micropreemie blogs. This post really hit home as I've been worrying a lot lately how it will be for my trio. Most likely Annabel will for sure need to go to special preschool, possibly Johnathan due to his speech delay from hearing aids, but probably not Madelyn. It will be so hard to have them going different ways, and our sweet little girl on a bus at the age of 3!?! The unknown of the future is so scary sometimes!
Jamie
I know she's your child and I know you are her parent. And so I know you mean nothing derogatory about your child. I just wanted to say this:
Consider for a minute how calling it the "short bus," which is a term used in a derogatory fashion, might sound to her peers' families, or to families reading this blog, or to teachers (like me) who spend their days defending their students from such derogatory terms.
Because when someone else says something about your child riding the "short bus," I guarantee it's going to sting. (The old "I can say it but you can't" thing.)
That's why it's called "special transportation" on the IEP.
I know you mean well. It's just that you are about to jump into an entire school career of defending your daughter against injustices/insults. I do it for a living. It sucks. So it helps not to feed the already existing mess of terms out there that are meant to insult and hurt feelings.
Hi Annon, thans for your post...
I had hoped that it came across in my post that I meant nothing derogatory for saying the "short bus".
I meant it that I probably was like most people out there before knowing all I know now, I used to make the "short bus" jokes like everyone did (call me a terrible person, wish I could take it back).
My comments here was my realizing that the bus IS short that takes my daughter to school each day (that she LOVES by the way). It was like a brick to the side of my head, oh, my daughter is taking the short bus, and how I wished I could take back my insensitive coments over my lifetime of talking about the "short bus".
Hope that all makes sense!
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