Time Flies

It has been 1 year, 7 months, and 22 days since my last blog post.  Between work, my 15 year old (yes…15!) two dogs, Kendall, Justin, Facebook, Instagram…well, blogging has gone by the way side. 
I realize that I didn’t post about Kendall’s 1^st grade year.  So many wonderful things happened during the school year for her last year.  She continues to thrive socially, drive her chair, progress in her literacy, use her communication device, and vocalize her joy, anger, and excitement.  She is sleeping better these days and her health is relatively stable.  With the addition of a new continuous blood glucose monitor assisting us in her Type One Diabetes management, her Hemoglobin A1c’s are the best they’ve been in years. Her vesicostomy has eliminated UTI's from our vocabulary, and Botox continues to delay our inevitable hip surgery.  I don't talk about seizures.  Ever.    


While the past year and seven months has been filled with much happiness, we have faced some loss too. A couple February’s ago, she lost vision in her left eye completely.  This was a huge punch in the gut for us.  The short story is, she developed a Strep infection that latched on to her shunt and it had to be removed.  The infection and trauma to her eye was so great, it detached her retina.  We did everything we could to save it, but just couldn’t.  She is adjusting accordingly.  She is so strong.


This past year I also lost my mom.  Kendall lost her biggest cheerleader.  Every single blog post I have written in the last seven years, I guarantee my mom was somewhere in my house holding Kendall, rocking her, reading to her, massaging her, singing to her, or praying for her.  She did these things because she loved that little girl with every part of her being.  She also loved me the same and wanted me to have breaks.  She frequently hugged me and held me encouraging me that I was doing a good job raising my kids.  There wasn’t a day that went by that I didn’t talk to her and receive some words of encouragement.  To say there is a void in her absence is an understatement.  My world stopped.


The month after my mom passed, our beloved nurse, Angie, who was with Kendall since she was 14 months old, moved away.  Another loss that cut deeply.


Grieving for my mom opened my eyes to so many things.  It changed my perspective on what is important to me.  In times of loss, you really do see people’s true colors.  I received so much support from so many people (and unfortunately, there were also people who I once really cared about that I will no longer bother with ever again.)  But mostly, I was overwhelmed with the kindness shown by those who didn’t even know my mom, but wanted to be there for our family.  Donations in lieu of flowers went to the Cook Children’s Foundation and were set aside for the sibling programs. I am embedding the video played at her memorial.  I know my mom would have been proud.


Through the many days of sadness in the past year, especially the weeks leading up to her final breaths, I was able to develop a sense of peace.  Not just with my mom, but with Kendall too. Dying is inevitable.  But living, living happy, that is a choice. 


I could focus on the things Kendall still can’t do, or feel sorry for Justin, Kamden, and myself that Kendall still requires 100% care and we can’t do things normal families can do.  But I choose not to feel that way.  I choose to celebrate every breath she takes.  I choose to focus on the positive and celebrate the goodness in the people who take time out of their lives to help and be blessed by Kendall.  I am grateful for Kendall’s grandad (my dad) who lost his soul mate of 50 years, but continues to show up each day to get Kendall off the bus with a smile on his face!  (he also showed his love and loyalty to my mom by staying by her side non stop until her very last breath) 
I know we are blessed.  Some days it is harder to recognize that.  But we are.


So, since I don’t know how long it will be until my next blog post….for those young families that may have just received a devastating diagnosis and are frantically searching the blog-o-sphere for encouragement, please know this:  You can do it.  Just look back to my first post and seven years later….this girl continues to prove the Dr.’s wrong!

In Loving Memory of Roxie O'Rourke (aka Nonna)

Reflections on Kendall’s Kindergarten Year

“You will look back on therapies, appointments, sleepless nights, tears, triumphs, milestones, equipment, ignorance, struggle, strength, and you’ll say with certainty… IT WAS ABSOULTELY WORTH IT!”  -A Very Special Needs Resource

 So once again, life has taken over.  Since my last blog post, a lot has changed.  I quit my job as a Vision Teacher in the Dallas ISD. There are a number of reasons why, but the main one is that I was spread too thin and emotionally drained.  I don’t regret going back to school in the years I stayed home with Kendall.  I certainly learned a lot that will help support Kendall’s education.  I will continue to pay it forward and help other moms navigate the system and advocate for their own children.  And, as luck would have it, I was able to go back to work for the company I worked for when Kendall was born.  (A job I never would have thought about leaving if Kendall had been a “typically developing” childJ ) So it all worked out.  I’m able to get my children up, dressed, and fed each morning, and see them out the door.  I also have more flexibility for the plethora of appointments and school meetings raising Kendall requires. 

Kendall  turned six a few weeks ago.  SIX.  I can’t believe how quickly time goes by.  This year of her life was filled with many firsts, and I attribute that to her great success in school.  From walking with a gait trainer, moving her power chair independently for extended periods of time,   coloring and holding pencils and crayons, brushing her own teeth and hair, to sleeping in her own bed and being self-motivated to use her communication device, this year has surpassed my expectations tremendously.   A few years ago, all of these things seemed like pipe dreams.  Back then, we just tried to get through some of those very long days without hours of crying fits and rages!  Kendall still has a number of challenging behaviors at home, don’t get me wrong, but she is growing up.

This school year couldn’t have gone better.  We have been so supported at our HOME CAMPUS!  Kendall was truly educated side by side with her non-disabled peers the maximum amount of time possible!  She only left for Resource classes twice during the day (and only for 30 minutes)  She had  teachers  that made certain Kendall was included, and also welcomed her nurses and support staff into the classroom. Our district did an amazing job ensuring that her IEP was honored and that it was as natural as possible.  The level of professionalism this year by her team and the administrators was remarkable. 

We added a Behavior Specialist to the mix.  She created a “token economy” behavior system for Kendall and made a video that gives step by step ways to positively encourage Kendall to show us what she knows!  This video is easily passed on to those who work with her.

Although IEP time makes me stress a little, this year was much better than the past.  I feel like the Diagnostician, Assistant Principal, teachers, and related services really listened to my concerns and shared in our family’s vision for Kendall.  I’m confident this next year of progress monitoring will be better and make more sense, since we have more of a concrete plan written in to her IEP.  I'm also extremely excited about the focus on literacy in first grade!  I have no doubt next year I will be able to say she is a reader!!

We are finally on the right path with the communication device.  Her speech pathologist at school has gone above and beyond to learn the ins and outs of the selected device, and also is training others how to use it.  Kendall’s IEP requires her to use it three times in each class.  I sleep better at night knowing that this is progress for her and a means to her independence and ending communication frustrations for her.  We are going to do our best to continue that at home throughout the summer. 

We have faced a lot of decisions regarding Kendall’s health this year.  Tonsils and hip surgery are inevitable, but I’m still in denial about both.  Kendall’s eyes are finally healing from the 5 surgeries this year…and we finally will have a three month break from eye exams under anesthesia.  But despite  all the absences Kendall had this year, she still did amazing!

This life of ours is not always easy.  I still have my moments of anger and hostility toward the universe for how hard things can be for Kendall Ann.  But overall, we seem to be plugging along!  There isn’t a day that goes by where I don’t count my blessings for our loving and supportive family and friends, our nurses, and school staff.  Life is a precious gift, and I cherish every day of it!

 

 

 

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!

 

 

 

 

 

 

 

 

 

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. 

 

 

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.