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.

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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.
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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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Wednesday, December 26, 2012

InstaChristmas!

Merry Christmas!  As redundant as it may seem, I'm going to share my Instagram pictures here on my blog.  Believe it or not, there are a few people in my life that don't follow me on Insagram  (AKA...my mother, and my mother and father in law!)  My dad's a pretty hip 75 year old. 

So here are a few of our-never-get-old-Christmas-tree-photo-ops over the past month! 

Some of our festivities include:  Kamden's winter recital (I'll post more on that later) Kamden's SibShops party at the hospital, and multiple lunches and dinners out where I forced my family to get in front of a tree! 

We are enjoying a day of rest and being warm inside this Christmas Day while a Texas blizzard is happening outside!  Our puppy dog Addie (now almost a year old) has been entertaining us as she chases snowflakes!  And Cooper dog (almost 14 years old) couldn't be bothered.

We plan to continue this day of rest in preparation for the craziness of 8 appointments and a surgery for Kendall in the upcoming week...bleh!

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Monday, December 24, 2012

Make A Wish

About a year ago, I looked into Make-A-Wish for Kendall.  Actually, I applied, then revoked my application because I really took issue in saying she had a life threatening illness.  If you've read my blog for a while, you know I have a really big issue saying Kendall has a Mitochondrial Disease. I kind of buried my head in the sand with it.  Anyway, after talking to family members and friends, I decided to apply again.  Kendall was granted a wish...

Kendall's most favorite thing in the whole world is swimming.  She feels free in the water, she gets to play with other kids, she gets a work out and it makes her muscles feel better.  In Texas we have warm weather from May to October...but when it cools off, it really cools off.  We never winterize our pool, but without a heater, it is definitely too cold to swim.  So, Kendall's wish was for  a hot tub to enjoy swimming when our pool is too cold. 

Our Make-A-Wish team was incredible.  They provided and installed the weekend after Thanksgiving (with crazy electrical work too) a beautiful Marquis Spa, pad, and cover.  We have the Wish model.  It fits five people comfortably.  The temperature can be adjusted quickly and easily.  It has two fountains and gives Kendall an entertaining light show when it's dark!  We have it positioned right off our patio, and it really becoming part of our routine!  In the evenings before bed, Kendall squeals when we talk about getting in the water. 

Make-A-Wish also took it to another level!  They came up with the idea to also provide us with a lift so we can get Kendall in the water and out as she gets bigger without any trouble.  We haven't installed the lift yet, because we've talked about moving the hot tub closer to the pool so the lift can be used for both the pool and the hot tub. 

I have loads of pictures on my desktop computer that I took with my good camera, but my poor desktop is in the shop, so these pictures on my phone are the only ones I have to share.

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Clearly, Kendall loves it.  And the rest of the family does too!  We can make memories in our backyard together everyday! 

So, a huge thank you to Make-A-Wish for such an amazing gift.  We will surely get a lot of use out of it, and are forever grateful.






Saturday, December 22, 2012

Exhale.

It has been a long time since I visited this blog. 

A lot has happened.

Obviously work and daily responsibilities have taken over my free time to blog.  We haven't had a free weekend in two months!  Between Justin's travel, Kamden's extra curricular activities, and Kendall's health issues, my days have been packed!  I'm not complaining.  Things are good.  But his morning at 5:15 (my usual time to get up) I walked out into the kitchen, made a cup of coffee, and turned on my computer.  I'm elated that I have the next 16 days to relax, read, and enjoy my family. 

I love having this blog to journal our daily happenings.  I love reading other blogs too.  I remember in our "early diagnosis days" watching blogs taper off when the kids were around four.  For me, that's kind of when I stopped trying to find a reason for Kendall's disabilities and changed the way I think about things.  Our family is at a point now where we look for ways to incorporate Kendall into the things we like to do, instead of making excuses why we can't do them.  And for me, one of those things is work.  I love working.  I've always loved working.  Yes, there is a lot of guilt involved some days when I leave and Kendall is sick, but when I merge onto the freeway, I get to be Jocalyn for the rest of the day instead of  just Mom.  And that has done wonders for me. 

So, backing up to October....we finally took the plunge and remodeled our bathroom.  Kendall weighs almost 40 pounds now.  Her tone tends to kick in when I'm lifting her or carrying her.  She thinks it's funny to kick her feet and wiggle.  I don't think that's funny when she's wet.  So we refinanced our house, and used that money to pay for our bathroom!  Where there's a will, there's a way.  Our Medically Dependent Children's Program money would have covered the bathroom previously, but they have had many, many cuts lately, and we just didn't want to mess with it. 

We knocked out a linen closet to widen the doorway.  We got rid of the tub, and added a new shower head with a handheld.  To save money, we decided to do the bathroom in waves.  We will replace the vanity when Kendall gets a little older.  Right now, we help her brush her teeth and wash her hands and enjoy the storage below the sink!   Instead of drilling down into our slab, we built the shower up a little bit and made an incline.  Her shower seat is also a potty seat, and can easily be rolled back and forth.  We are also able to roll her all the way to her room in the seat too, but haven't done that yet.  Kendall enjoys having the warm water run on her while she's getting bathed with the handheld!  I think it's working out lovely.  Here are a few before and afters:

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Wheelchair accessible bathroom



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I'll stop there for now.  I plan to update more throughout the break.  I have a lot of time to make up!