Many of my close friends know that a few weeks ago I had a terrible slap in the face when it comes to the inclusion of my darling girl. In her IEP it looks great. She has had inclusion time in a general education pre-k (something we really had to sort of fight for because in Texas she is not pre-k eligible....well technically she is for PPCD because she has a disability....but not for low income or foster kids, or military kids...but that's another story). Anyway, I quickly found out that maybe some of the people involved in her education do not share the passion and love for inclusion that we as a family feel.
Long story short, the Pre-K kids that Kendall spends a large part of her school day with were taking a class picture. The teacher and aid of that class asked if they could take one picture with Kendall and one without Kendall. Mind you, there were other PPCD kids in the picture that were not asked to leave (not in wheelchairs) Of course when I got wind of this I exploded with every emotion possible. I followed that with e-mails and phone calls to people in administration. I had quick replies....but not a lot of follow through. Their solution? A book study on "Out of my mind" a great FICTIONAL story on an inclusion fail. I think the book's great...don't get me wrong. It gives great insight that a child with cerebral palsy or dystonia can still have normal or exceptional cognition. But it is a children's book. I guess I was hoping for a more research-based training. Then I realized maybe they don't know how to do that.
In favor of giving both sides of the story... the general ed pre-k teacher called me a few days after the event happened. She stated that she did not ask for Kendall to be out of the picture, simply that she wanted her wheelchair out of the picture. Whatever. Like that's any better. And besides, there were way too many people that heard her to back track. She even tried to blame her aide. Again, whatever.
To further the heart wrenching event, the rest of the girls in the pre-k class did end up taking a picture together without Kendall. Shame on them. Shame on the moms in the room when it happened. Shame on the person who took the picture (the pre-k teacher) Shame on them all. But are they really to blame?
I also found out that a few weeks before, they did a Pre-K circus. Kendall wasn't invited to be in it. Other PPCD kids were. Kendall was not. Again they excluded her.
We had Kendall's ARD to determine our plan for next year. During the ARD the pre-k teacher wasn't going to comment when we discussed Kendall's present level of academic functional performance. I leaned over and asked to hear from her. She said...and I quote "Kendall loves being in my room. She has fun while she's there. I love her smile." Ok. Great. My kid has a nice smile and likes being around other kids. That's ALL you have to say about her time in your classroom? Oh, wait. I forgot. She's not really your student. She's a visitor in your room. And this ARD is to discuss the placement of a student in a general education classroom. We could have used a little more. (and by the way, she wasn't even going to come to the ARD.)
Now, the district can get upset about this and what it does to their reputation, etc. But what are they going to do about it? Who's job is it to train general education teachers? Is it the Special Education Teacher's responsibility? Support staff? Because those are their peers. It really holds more of a punch when it comes from administration. Plain and simple. Not to mention some special education teachers really don't buy in to inclusion either. They almost "like" the idea of being the "special" teachers. Some of them even go so far as to tell parents that it's best for their children to be in a self contained classroom with other kids with disabilities...that they should start there because their kid may get ignored in a general education classroom. This infuriates me to no end. EVERY CHILD SHOULD START IN A LEAST RESTRICTIVE ENVIRONMENT FIRST! If you need to make changes later, so be it. I personally believe in raising expectations (especially for kids who are multiply involved) and supporting them with accommodations and modifications. It's 2013 for God's sake.
I can go on and on about how hurt this made me. It's the big picture that really hurts my heart. My darling little girl had to hear adults talk about her like she wasn't good enough to be in a damn picture. I'm not sure I'll ever get over that.
But we are moving forward. Kendall will be in her Gen Ed Kindergarten class next year with her neighborhood kids. She'll receive resource support during "intervention time" which is suppose to be during individual work time. She'll have a full time nurse that will assist her and her personal care needs. She'll have resource teachers taking her for one on one instruction 30 minutes during math and 30 minutes during reading. She'll be with her peers every other minute of the day. It's official.
We are very open about our journey with Kendall. We're happy to answer any questions, and welcome all your comments! The one thing we don't want is to be isolated from our friends and family. I've been that person who thinks it is easier to just ignore a child with special needs and their family. I've feared hearing their story. I've been guilty of looking through a child with special needs. I've also thought and said "how on earth do you deal everyday?" Although it certainly isn't easy, we are a normal family...celebrating all the milestones our daughter hits (and maybe cheering a little louder in the process!) Let me tell you...it's been a long road with many bumps but the love and support we receive daily is what keeps us truckin'! Click here for the full story on our precious baby girl Kendall Ann, or scroll down for the quick recap! Thanks for visiting!
more music please!
clearly before keto diet and diabetes
Kendall Ann has blessed our lives in so many ways. She is truly a gift from God and has proven herself to be a fighter from the beginning. She was born with many neurological and optical abnormalities, which we now know is due to a stroke in utero...probably due to her Factor V Leiden mutation and two copies of the MTHFR gene (1-14-09).Oh, and NOW she has Type 1 Diabetes (8-19-09) And NOW (12-16-10) she has problems with her Mitochondria ... and NOW (2-11-13) a neurogenic bladder resulting in a vesicostomy. Of course there is apossibility of a Mitochondrial Disorder, and a possibility CDLK5 caused all the problems and Mito secondary...but we will never know, because we've decided no more testing! When she was born she came right home...no NICU stay...and we had no idea anything was wrong! She has undergone numerous hospital stays and a number of surgeries, but through it all, she has maintained a smile that wins the hearts of everyone who meets her. Please join us in our journey of life with a special little girl full of spunk and personality who happens to have multiple disabilities.
I like to say I'm a party- girl-turned-career-girl-turned-stay-at-home-mom to a son who's gifted and talented, and a daughter with special needs. My hubby levels me out, and I'm a lucky girl to have found him.(I kissed a lot of frogs!)
I love my life and all it's chaos. My family and close knit group of friends help me get through every day! I'm getting better accepting that God's plan isn't always my plan...and alcohol sometimes helps :)