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.
Licking my wounds and marching on.
12 comments:
I've silently followed your blog for a while. My daughter has Type 1 Diabetes. I am so sorry about what happened to Kendall with the picture. It wasn't right. And yes, shame on that teacher. Your daughter is beautiful. She is part of that class and should have been in all class photos. People can be so inconsiderate and yes, it is so hurtful. Try not to give those people too much thought - they're really not worth it. Focus on those who love & accept your daughter and who go out of their way for her. They're the ones that matter.
This makes me sad. I am sorry. People are just ignorant sometimes.
as a mother of a daughter with special needs my heart breaks for kendall and for you. my biggest fear is that my daughter wont be included in things and for kendall to go through that is heartwrenching. i hope that teacher understand how wrong it is to do that.
I was gritting my teeth reading this! I am an RN for a 9 yo old boy with similar needs to Kendall minus the diabetes. His parents had to fight almost to the point of bringing it to the court for full inclusion. He has an aide at all times, and during independent work time he remains in the classroom at his own table working at his own pace on his work. When the class has carpet time he is moved from his wheelchair into a tumbleform on the floor. When the class stands for activities (a longer activity) we get him up & stand with him. (He can bare weight & walk with significant assistance) His teacher includes him in classroom activities, like drawing his other classmates names to answer questions & his classmates take turns riding the elevator with him. As of result of his inclusion he went from hating his talking device (completely non-verbal) to using it spontaneously & appropriately when the teacher asks the entire class yes no questions. He is included in reading groups (we pre-program pages on his ipad for him to "read" when it is his turn) He has truly benefited from his inclusion with no removal from the classroom. He comes out of the room once per day during the classes "silent reading time" & works with the reading teacher & another student right outside the classroom for 30 minutes, but only because it is silent reading inside the room. I work for a private nursing agency not provided by the school system & thus myself or the other RN on his case attend school daily. As a result of this there is another adult to advocate for him & report back on what is truly occurring within the classroom. I pray that you are able to straighten things out & get a good teacher for Kendall that loves & cherishes her as part of her student body & in the academic environment.
Just remember, your daughter is impacting more lives than those ignorant people involved ever will. Yes, when our children hurt, we hurt. Kendall is a beautiful little girl making a difference and breaking barriers, whether they like it or not :)
I, too, have been silently following Kendall's story for a long time. We knew Justin in his early days at BNSF and I stumbled upon your blog at some point and have really enjoyed watching Kendall grow and flourish.
The situation with the Pre-K class infuriates ME so I can't even imagine your feelings on it. I work in another school district and have seen PreK with PPCD work well. I am so sorry you've had such a rough go of things with the school. Different scenario, but I understand how draining those battles can be.
I think the Kinder situation sounds like a good set up and I can't wait for Kendall to show those nasty adults how wrong they were!!!
Traci Mai
As I read your blog post I sat there with my mouth wide open at how inappropriate the situation at the school was handled by the school employees. As an para-professional, which is an aide in the special education classroom, I CANNOT believe that they would take two pictures! Why does it matter if theres a wheel chair in the picture!? They are seeing the disability first and Kendall second. I would go above the principal if this is not taken care of and to make sure they know what they have done. My student that I work with is also in a wheelchair and the teacher makes room for him to move around in the classroom. I, as his aid, make sure I know of any "fun" or "extra" things the class is doing so that he can be there and be involved. I am disappointed in the school and the teacher. I am sorry that has happened for you and your family.. I hope kindergarten is a better experience for Kendall!
hope you dont mind me saying this but i willingly wantingly, chose to place my 11 year old with CP, developmental delays, apraxia, and intellectual disablitiy in a school for children like her 2 years ago. she is in the most beautiful life skills class. she has gained confidence, she has grown in so many ways and she is learning at her own pace, learning things she needs to know... like how to dress herself, how to feed herself, how to communicate with her dynavox in an environment where she is not "different". we tried the "inclusion" road for quite a few years - she was picked on, physically hurt, very scared at times as she does not understand some things. i could not be happier with my decision for her. she has never been happier - for the first time in her life she has friends. real friends that understand her. she has a staff that is tapping into her strengths, not trying to fit her into a "typical" mode. not a big fan of inclusion for my special needs kids. just saying.... anne in ny
Thanks Anne for your comment. Just to clarify, I am in no way saying inclusion in a general ed classroom is right for every child. I am a teacher of students who have visual impairments. In some cases, the Texas School for the Blind is the least restrictive environment. There are a lot of factors involved in a decision like this. It depends on your district, the school, the family, the other kids. This is certainly a journey, as you know. For us, and the fact that Kendall is only five...we must start here. But I'm not at all going to say that I will feel the same way after this year. But I feel in my heart that inclusion is the right way to begin and hopefully continue. If we blaze this trail, maybe there will be a time where she will have real friends, and people tapping into her strengths in the same setting as other individuals her age....including in adulthood.
Just to clarify, when you say 'Shame on them', do you mean the little girls in pre-k? While I think that the adults were completely out of line, blaming small children is inappropriate. I'm sure you were upset and understandably so but I feel that was going to far. I am not trying to attack you, I really enjoy your blog and I appreciate you were dealing with an extremely unpleasant situation.
Anne, I don't at all blame the children! I was definitely referring to the adults. The pre-K teacher, aide, and moms who stood by. That's the real problem. These kids are seeing adults do this and therefore, think it's ok. We have a responsibility as adults in the schools to model appropriate behaviors.
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