Monday, July 18, 2011

Not The Post I Was Expecting to Write (Updated!!)

I get big ideas. I also have the fire inside me when I get these big ideas, to make sure they come to fruition. If I get a big idea, and someone tries to tell me it's not going to work, I will find every way possible to prove them wrong. I've been this way since I was a little girl. Just ask my mom. It's who I am.

Unfortunately, this last big idea didn't go as I had planned, and I quit. Now, I'm struggling with the fact that I gave up.

So, let me back up. About two months ago, I watched the documentary "Including Samuel." It definitely had me sold on inclusion, and had me convinced that I should join arm in arm with my fellow moms of children with disabilities, and fight the good fight. The view is that this is somewhat of a "Second Civil Rights Movement" I was geared up and ready to challenge all who passed me. About a month or two ago, I attended a small (free) seminar on Inclusion at the ARC. It was a great meeting. The presenter was very knowledgeable based on her own personal journey with her son, and everything there was extremely black and white. I left thinking that full inclusion (with support) was the only way. Someone actually asked if the presenter thought there was ever another way. She basically said no, if the district is equipped with the resources to make it happen.

The combination of these two things really sent me into over-thinking mode. I weighed every option. If I was convicted in the thought that Kendall would and should only start out with full inclusion, it means she wouldn't be in Public Preschool for Children with Disabilities. (the program she's in now) The district we live in believes (and my personal view is EXACTLY the same)that the pre-school programs are for children with disabilities or children who are economically disadvantaged, or have English as a second language. These are public programs designed to give extra special kids, some extra special help. I'm all for it, and grateful we have such programs. But the view I found myself trying to adopt meant, I'd better walk the walk and talk the talk. SO, where would my daughter be going if she were three and didn't qualify for one of the free pre-school programs? She'd go to the same pre-school program my son went to at the church around the corner. (Then, we'd be able to have our nurse there with her full time, and she'd be learning a typical curriculum with other typically developing kids) It was an exceptional program, and he was more than prepared for Kindergarten....

Anyway, I thought Vacation Bible School would be a great way to test the waters. Needless to say, VBS ends at noon, and it is 11:00, and we are home. It didn't work out. But we tried.

There was nothing the church could have done differently. They have a great program director with loads of experience. They have caring volunteers with loving hearts. But they don't have teachers who have been trained on working and adapting things for children with disabilities. Therefore, Kendall was crying at the loud unexpected noises (other 3 year olds were too...) and she wasn't following along with the Bible stories. When I walked by her room with my group of pre-schoolers Kendall and her nurse were in there alone. That broke my heart.

The seven kids in my group were playing with markers, running around, coloring, listening, and full of excitement. They told you when they needed to go to the potty. They interrupted and blurted out answers. They were normal, typical, children. And Kendall is not. Period. There is no way to hide that. She's not like everyone else.

She was stared at. The kids asked questions about her and then moved on to playing with the other kids. The adults stared some more. She wasn't having fun. I wasn't having fun. And our incredible, awesome, loving nurse, would never have said she wasn't having fun. But I'm sure she wasn't.

So, this sunshine and rainbows view I had, and the fire in my belly to make sure this was a great experience for everyone, failed. Miserably. All it did was make me leave thinking this whole idea looks fantastic on paper. But it doesn't work. It doesn't matter if Kendall understands everything going on around her or the other kids all want to try and include her. It wasn't happening.

I came home and had a really good, long cry. I cried because I couldn't bring myself to have a genuinely happy heart helping the kids in my group. (Kendall was in a different class around the corner...maybe if she had been in my group it would have been different) I cried because while the other kids were learning of God's love and the message, all I could think about was why He couldn't have made Kendall like the rest of the kids. When the kids were doing arts and crafts, Kendall was in a room by herself with her nurse because she couldn't get a grip and would have been disturbing the other kids. It sucks. It isn't fair. And all inclusion did for me today was make me (and Kendall) sad.

The ARC seminar mentioned that all special education (and self contained classrooms) does for our kids is put them in "a very special room with very special people." And that only ends them (when they are over 22) in a "very special place with very special people" and as she said "those places aren't so nice." But today I think I like the idea of a very special place, where Kendall doesn't feel so different. And I don't feel so sad.

Don't get me wrong. I'm not giving up on inclusion as a longer-term goal for her. I hope for her to have a plan for inclusion in her next IEP. But I no longer long for her to be in a regular pre-school class. Kendall's happy where she is. And I'd like to keep it that way.

So, sorry this post doesn't have a picture of Kendall smiling, holding hands, and singing songs with other kids her age. I don't have one. I'm giving up on the week at Vacation Bible School after the first day. I'm quitting. It sucked.

I will; however, leave you with a picture of Kendall playing with her "very special" brother at the splash pad last week. None of the other kids would play with her. One mom even moved her child (by the arm) away from Kendall. That wasn't really a fun day either. But we tried.

I guess that's just it. We try. You never know when something might actually work out. And we owe that effort to Kendall. It isn't my job to change the world's view on disabilities. I think I've been blessed with these experiences so that I can work with "extra special children" and understand their "extra special parent's" emotional roller coasters. So, I'll forgo my picket lines for now and continue the course I'm on. Good thing I passed that braille class with an A :) :) :)


I wanted to update this, because I tend to rant then move on....I'm bad at responding to comments (actually...I don't even know how to do it on Blogger!)

Thank you all for your comments, e-mails, facebook comments and thoughts. As always, this blog served it's purpose today. It helped me re-cap a situation, so I didn't have to tell the story to my family ten times! It also helped me get out emotions that would have otherwise consumed me.

I heard from friends who I think about often, and my spirits were lifted almost immediately. Thank you to all of you for your support. Thanks also to those of you who can empathize and know these exact feelings. It helps to know you're not alone.

I've said it before, and will continue to say that I feel so blessed that we have such an amazing team of people working with Kendall. I witnessed in my own teaching career people who should not be in education. I also hear horror stories all the time of IEP's gone bad.

Every student is different, ever family is different, and every educator is different.

I wanted to attach the e-mail below (with permission of course!) that I received from Kendall's TVI. (teacher of the visually impaired) It kinda just brought everything full circle for me today. I'm new at this. I'm learning as I go. I'm also a very emotional person and react quickly. And I am so lucky to have people in Kendall's life who can balance that out. It takes a village. And thank goodness I live in the one I do!!

oh, and Angie...our beautiful, smart, compassionate nurse, I would be a crazy person without you. Thanks for being my silent partner in crime :) xoxoxo

I read your blog a few minutes ago, and I wanted to tell you that I am sorry you and Kendall are having to go through this. I know you know this, but just remember that "inclusion" isnt an all or nothing thing. Just because she may not be ready for all the preschool activities NOW,doesnt mean that she wont be more ready in a year from now. Kendall progressed a lot in the few months that she was in PPCD with tolerating other kids, learning to be a student and dealing with the typical chaos of a classroom. She has 2 more years in PPCD and that really is a long time.
The inclusion seminar that you went to was good information, but that doenst mean it was exactly what is best for Kendall. There are extremes in every situation. If you look at inclusion as a spectrum and not an "all or nothing" or a "pass/fail" situation, then you can see that Kendall DOES fit into the inclusion game.
I taught kids in "those special classes" for 12 years before I got into the vision program, and I am telling you that as long as the program is run the way it should be run, that a lot of ground can be covered more efficiently than in so-called "regular classes".
I am sad that our educational system has not evolved enough that we still consider "special education" classes as somehow 'less' than regular education. Kids of all ability levels deserve a classroom that fits their needs, and those classrooms should NEVER be counted as "less": than the regular ed programs. I wish with all my heart, I could change that perception.
Jocalyn, I want you to know, that I do believe that Kendall will continue to learn and progress in whatever setting she is in. I see her someday in a classroom using technology to express her ideas, needs and opinions. Will she learn "differently"? Some people might say so...but I have to wonder... who is she being compared to? There is no other Kendall Briggs to compare her to,,, so the way I see it, she is learning the way Kendall Briggs was meant to learn. The point is SHE IS LEARNING. :)
I cant wait to see you both tomorrow. I just wanted you to know that I am thinking about you both and praying that whatever you decide for Kendall, that you will have peace and know that you are an amazing mommy...


A Journey for Joshua said...

I think I'll pick very special over "normal" any day! Love ya Jocie!

SarcasmInAction said...

yay for your A grade!
boo that yours and Kendall's hearts were hurt.
I love the pic of your kiddos at the water park! fun!

petersandel said...

Hi Jocie,

I think they call it special needs becuase the parents are extra special. Wow, you're an amazing Mom and I'm proud to have been a part of your life. Keep fighting for inclusion. She deserves and so do you. Love, Peter

Debbie said...

Your an awesome, amazing mom...the fire is all for the love and fight for amazing Kendall...and she is so deserving of all that you do!

I know the heart ache...the stares...the all way around it...but somehow these special kids of ours makes it all bareable!

Sending Hugs to a special, adorable Kendall and her special mommy!

The Henrys said...

Congrats on the A!!

I feel the same way you do about inclusion. I really want it for Gracie, but it just doesn't work and leaves us feeling very bad. Gracie is happy in her class, and she is getting the help that she needs to learn.

I'm sorry to hear about the kids at the splash pad not being very nice. We had a trip to the zoo earlier this year and the parents were doing the same thing, moving their kids away from Gracie as if she was contagious. It was awful. are not alone.

Zoey's mom, Heather said...

This was a great post and could have been written by any of us that yearn to have our children accepted and included for who they are and what they have to offer.Somedays we are more discouraged than others and somedays that fire comes back with a vengeance.Sending you peace to you mommies heart today and just keep looking at that photograph ... it is all that really matters in the end.

*Zoey just got her chair.What a difference it is going out in the world with her in it ... I haven't decided if I like the way people are looking at her ... or not.On the fence.could be the giant chip on my shoulder that is making the difference!

Anonymous said...

Although you had wished your post would have been able to take a different course and tell of a happier, warmer story... this is the face of reality. You are so smart and so brave. Your fight for Kendall, her happiness, and her future is so admirable. As much as we can't conceive of not possessing this inner fire for our children, some people really don't. You had a moment of anger, a sliver of despair, but you hold your head high and you grab your baby girl and love her and protect her. Working closely with families, nurses, public school teachers, therapists... I have paid witness to lives that are dictated by the anger and despair that merely crept into your being momentarily. Kendall's life is full of not but hope. She didn't pick you to be her mommy, but she would have if given the choice. The entire inclusion model has it's perks without a doubt. It can, however, be a classic catch 22. Self-contained classrooms are for extra special students. Self-contained classrooms meet a very unique purpose for some students. I have seen indescibable success to support either argument. Really, at the end of the day, Kendall will tell you in her own special way which path is appropriate for her. I truly believe this is a heavy hearted decision that your precious angel will exclaim loud and clear, in her eyes, with her hope. God bless you and warm regards, Kim Wade Lumley

TherExtras said...

What Terri said.

And congrats on the A!


Jessica said...

Ruby and Charley said they would play at the splash pad with Kendall ANYtime!!! Love you all!!!

Jane Steen said...

I have a very special 19yo daughter. She's been in inclusion and special needs settings at various times in her life depending on what she needs. But where I see her light up and become the most alive is with others of less ability than she has...where she can be useful to others.

And as for "those places being not so nice..." I have never been with a nicer bunch of people than special needs adults and the people who love them. I wish I could take you around with me!

Jacolyn said...

Jocalyn, My heart aches for you...and me...and all the other special mommies who have to to give change...their dreams. You inspire me so much to not stop trying but also to love our girls just the way they are. Hugs

Holly said...

Not a long heart felt comment here, but I just wanted you to know that you guys are loved and I totally understand.

I've always said it....
Every family has to make their own decisions based on their own situations.

Whatever you and Justin decide is the right decision. Go with your gut. It's always dead on.

As soon as we get back from vacation the girls will take over the splash pad Kidwalk and all!

Maria said...

We cry with you... and Kendall is so much further ahead than Lizzy... we think Kendall is awesome and she looks so healthy and great and she has a loving family... I know that I feel really guilty when we all go somewhere and Lizzy is home with the nurse, but then when we go somewhere and I get the looks and the kids in Will's class ask why she can't talk or walk... I just KNOW.
What a great TVI too! Thinking of you guys. Maria & Lizzy