Monday, September 9, 2013

Included in Kindergarten

“When inclusive education is fully embraced, we abandon the idea that children have to become ‘normal’ in order to contribute to the world…We begin to look beyond typical ways of becoming valued members of the community, and in doing so, begin to realize the achievable goal of providing all children with an authentic sense of belonging.”  --Norm Kunc

It seems like ages since my last blog post.  Life has been such a whirlwind lately.  My heart has been filled with angst about this school year for Kendall.  I know I’m not alone amongst the other moms of Kindergarteners beginning school this fall.  It’s difficult to put your child in the care of others.  Of course we have a trusted group of nurses, teachers, and related services….but the uncertainty of the unknown makes my head spin.

Like all other moms, I have to find a peace that I’ve raised my child to the best of my ability, and at some point she has to fly on her own.  I have to trust in the good in people.  I have to trust that when someone looks you in the eyes and says something….that’s what they mean and they’ll follow through.
There has been so much preparation put into starting this school year out right for my sweet girl.  Her incredible Vision Teacher (TVI) and Orientation and Mobility Specialist (O&M) did a presentation for the Kindergarten teachers on accommodations and modifications over the week before school started.  They made a sweet power point presentation and slide show that did a wonderful job introducing her to the team.  It showed all of the ways that we include Kendall naturally in our home life, and how loved she is.

Within the first week of school, Kendall was invited to a birthday party.  A princess tea party.  I cried when I received the invitation.  This was a friend of Kendall’s from school.  Someone she knows all on her own.  Sure, the letter we sent home with suggested answers for students with questions about Kendall’s wheelchair, insulin pump, and communication device may have spurred the invitation.  But the bottom line is she was invited, included, and enjoyed every minute of it (until the cheering and happy birthday song!!) 
In Sunday school, we can’t walk through the hall without another five year old stopping to say hi to Kendall.  The kids from her school are introducing her to other kids and their parents.  When I went to pick her up a few Sundays ago, a little girl asked if Kendall could come over to play. 

I can’t help but feel hopeful that we are breaking some of the barriers here.  Kendall is happy, excited to go to school each day, and participating in class.  When I picked her up early for an appointment, she was coloring and working independently just as the other kids were.  Side by side with her peers, she has made it through two, TWO!! assemblies complete with cheering and microphones without a melt-down.  
Her teacher is the perfect match!  A little sarcasm mixed with strong teaching strategies and serious structure makes it work.  I have no doubt that Kendall gets her humor!  Kendall respects her teacher, and it is very natural.  It’s not like it was in the past.  Nobody is babying her.  Nobody is making the other kids feel like Kendall needs “help.”  She’s a student in that class….not just a visitor dropping in. 

 I have to say I am cautiously optimistic.  I know this may not work forever.  I know this may have to change in the future.  I know this model isn’t for everyone…  But it is for us.  And it’s working!





Friday, June 7, 2013

An EPIC inclusion FAIL.

Imagine the excitement.  A full year of PPCD/Pre-K.  Programs, class pictures, kids having fun on the playground, eating lunch with the curly haired little girl in the power wheelchair with the pink wheels.  Everyone interacting despite their differences…
The end of the year arrives.  The classroom floods with excited parents and their cameras and video cameras.  Dads have taken off work.  The kids are dressed up in their costumes.  The teachers are smiling through their exhaustion, but ready to show off the dances, songs, and poems they’ve been working on for months.  Pictures are snapping right and left.  The kids are smiling and laughing with one another. They are proud of their friendships and accomplishments.  One by one they are called up to the “stage” and recognized for their strengths.  They tote end of the year gifts for the teachers in creative wrappings…

Just imagine.

That’s all I can do.
I’ve tried to hide the situation.  I’ve tried not to blow it into an irrational rant on facebook.  I’ve tried to act like it doesn’t bother me and that I’m moving on.  But if you read this blog, you know that’s not in my nature.  So if you’ve come here for a good-feeling-inclusion-works-again-all-is-well-with-the-world type post.  Don’t read any further. 

Because that’s not what this is.

What this is, is a complete and utter fail.  True, Kendall made a lot of accomplishments this year.  But socially, I don’t feel like this went well.  At first I did.  I was cautiously optimistic after Kendall wasn’t involved in the “Pre-K Circus” the first semester.  I was completely caught off guard and heart broken after the class picture debacle blogged about earlier.  But this third strike literally brought me to my knees. 

There was a pre-k program and Kendall wasn’t invited to be in it.  She wasn’t invited to practice with them.  Her IEP has her in the general ed pre-k program half of the time she’s at school.  Apparently they practiced and prepared during the other half. (The other half being when she's the only child in the PPCD classroom with three to four adults and no other students)  A child even spoke up and said “I wish Kendall had a partner for the dances”  but the teacher looked the other way.  I intercepted the letter about the program.  As you can imagine, I came unglued.  So, with five days remaining, a last ditch effort was made to include Kendall.  You know, taking another student from their able-bodied partner and pairing them up with Kendall.  Lots of backtracking was had by the principal.  (I imagine it went something like this:  you WILL find a way to include this child because her mother is really, really, angry….and has sent a bunch of e-mails)  Coordinators and Directors can’t do anything because this is a campus issue….but trust me, I made them aware. 

I’m disgusted.  And that’s the only way to describe it.  It was too little too late. It says a lot about a person if they have to be forced to do training on inclusion and disability awareness.  It says a lot about an administrator if they truly turn a blind eye three times in a row and don’t follow up with the training they promised would happen  (remember the book study….it never happened).

So, I pulled her.  I took her out of school with two weeks remaining.  For me it was such a punch in the gut.  We had to invite ourselves.  I wish I had just let the program happen and showed up for it with my husband, camera, video camera, and smiles.  Maybe if they could physically see the damage and hurt this does to a family they would have changed their approach.  And they also would have ended up on the local news.  Because, like I said….this is hurtful, unlawful, and down-right wrong.
The principal actually had the nerve to tell me there wasn’t ever really a “program” in the making.  Bull shit.  If you saw the pictures I saw of the PROGRAM you would realize a lot of thought and preparation went into this. 

So, once again.  Shame on them.  Shame on all of them.  I am so ready to say goodbye to this school and their “perfect little children.”  I’m so sorry that my child doesn’t fit into the box of normal children that you only include in activities. 

But wait, I’m really not sorry.  My daughter is exactly who she should be.  It may be hard and uncomfortable and require you to think outside of your box.  But she is going to be included.  She is going to be treated exactly like every other student.  It won’t be easy.  But we are not going anywhere, so you’d better figure it out. 



Thursday, March 28, 2013

EXclusion: GenEd Vs. SpEd

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. 

Wednesday, March 6, 2013

A Least Restrictive Environment...

A least restrictive environment requires that each local education agency ensures to the maximum extent appropriate that children with disabilities are educated with children who are not disabled. The Texas Education Agency states that “special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.”

Kendall’s turning five next month. I can’t believe it. Time flies…and keeps on flying. My thoughts on the above topic have evolved greatly in these last four years. I was a general education teacher for five years right out of college. I never in my life had a “special education” college course or class. In my first few years teaching at a Title One school, my eyes were opened quite a bit. I never had an entire room of children on grade level. In my teaching career, I always had to individualize my lesson plans for my kids. I was taught that was best practice. I never passed out worksheets and gave the same spelling list to my class. I just didn’t. I couldn’t.

So, I guess what I’m saying is, I don’t understand what the push back is! I never really had any multiply handicapped children in my third grade classroom. I had kids with emotional disabilities, kids with learning disabilities, kids with “dyslexia.” I would like to believe that if I did have a child with multiple disabilities, I would have embraced the challenges to find a learning style and form of evaluation that worked for that child. My job was to educate children. All children. I expect the same from teachers for my own kids now.

I do understand that teachers are overwhelmed. Often times, they don’t have the support they need to complete all of their tasks. They spend too much time getting kids to pass a test….blah, blah, blah. But the bottom line is: they are teachers. They get paid to be teachers, and if they don’t like the job or the work involved, they need to retire or find a new career path! Period.

So for me, it’s really a no brainer. Kendall is turning five. The law says she can go to her home school and be educated with her nondisabled peers. So, that’s exactly what is going to happen. I have a meeting scheduled before her ARD at the end of the month. If her present levels of performance lead us to goals that are academic (and by that I mean, in line with the TEKS “Texas Essential Knowledge and Skills” for kindergarteners) there shouldn’t be any problem. Making sure she has goals that don’t set her up for failure is my priority.

I plan to be pretty specific in her IEP on a variety of things, and I am hopeful our ARD committee will see things my way.

But we all know that the best laid plans don’t always go the way you expect. There are a lot of things that factor into the success of Kendall’s inclusion. She has to have administrators and teachers in her new school that share our vision for Kendall. I’m not worried about the other kids. Kids embrace Kendall. That’s obvious pretty much everywhere we go. Usually, it’s the adults that hold them back.

I won’t stand for Kendall being left out, discriminated against, coddled, or blending into the background. I expect her to be treated like every other five year old at school! And as of this moment, my gut tells me this is doable. We’ve come a long way so far, and I just know she will progress leaps and bounds side by side her non-disabled peers! (with in class supplementary aids and services of course).

Saturday, January 5, 2013

Surgery and More Surgery

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Two days after Christmas we visited our Endocrine Clinic. Due to everything else going on in our lives, I was behind on her labs.  They ordered another Hemoglobin A1C.  I've been dreading this one, so I didn't hesitate tagging it on to Kendall's upcoming surgery.


On January 2 Kendall went in for her long awaited Intraocular Lens Implant (IOL) surgery in her left eye.  The anestehesiologist was amazing.  The best yet.  Instead of intubating her completely, she did an LMA (a tube that doesn't go as far in to irritate the esophagus.  Kendall tolerated the eye drops (and by tolerating, I mean she only screamed and arched the entire time.)  They left her insulin pump in for the 2 hour surgery. (huge shock...since it isn't hospital approved....but I won't go in to that!) She had labs drawn, her lens implanted, an exam done on her right eye, and a new g-button placed. Because her airway wasn't irritated, they didn't have to giver her any steroids.  Her sugar was great and we were on our way home 7 hours later. All in all it was an easy day.

Endocrine 12-27-12Endocrine 12-27-12 When we got home she was cranky.  Her sugars started to rise because of the stress of surgery, she ran small ketones, but we quickly whipped things back in to shape.  We thought she would sleep.  She didn't.  She screamed all night.  All night.

The next morning Kamden and I took Kendall in for her bladder ultrasound before her surgery follow up across town.  She's finished her latest antibiotic for her UTI, and we already had this appointment scheduled.  (Nothing like hitting your family deductible before the first week in January.)  After the ultrasound, we headed down the hall to be worked in with our Urologist.  They cathed her...and it just kept coming and coming.  She filled two sample cups with urine.  Clearly she has been retaining urine.  The ultrasound showed the same.  Her bladder was distended.  There was a lot of debris in it, (likely bacteria) and her kidneys were also dilated. Her HA1C was higher than it's ever been. Not good.  Long story short, we made the decision to proceed with the Vesicostomy surgery. 

A year ago, this was my worst nightmare.  Sometimes things get put into perspective for you though.  UTI's are miserable.  Cathing everyday is horrible too.  Something has to happen.  She deserves to not be in pain.

I've recently discovered that sometimes well-meaning teachers classify children and their cognitive abilities on whether or not they are potty trained.  I've heard things like "well...this child is in junior high, and not even potty trained."  Or believing they should work on life skills such as potty training before they have more academic goals...We recently ran into an issue where Kendall wasn't going to be allowed to attend a community activity because she isn't potty trained.  (Obviously, I didn't let that go, and she was able to attend...despite the receptionist's attempt to quote "state law"...laughable)  My point is, the vesicostomy will make it impossible for Kendall to ever be potty trained.  She'll always have on a diaper and she'll always be trickling out urine.  I have to be OK with that.  And I will.  It just may take some time.

Her surgery is scheduled for January 30, but there is a chance that it may have to be postponed until mid February.  We are going to do her right eye and botox at the same time.  Killing three birds with one stone.  I have a few weeks to let it sink in. 

I do love this little girl!!
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