Tuesday, May 20, 2014

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!





Heather said...

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Deirdre said...

Hi Jocalyn,

I found your site when earching for help with dystonia.
I would be very grateful if you could answer a few questions regarding dystonia and Ketogenic diet. My nephew has some complex health issues, seizures from 6 weeks old, dystonia, developmental delays. The dystonia in particular causes a lot of distress with many painful spasms, waking at night etc. From my research it seems like a ketogenic diet may help (and obviously might help with the seizures -
they are mostly controlled with drugs). My questions are:
did Ketogenic diet help the dystonia? Is there a drug that helped the dystonia? Did the ketogenic diet help your daughter's development? My nephew is 4 but makes very slow developmental progress.
My email is deirdre.breheny@gmail.com
I would be grateful if you have time to respond! Thanks Deirdre

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