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.
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).
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.
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.
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!
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.
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.
We are very open about our journey with Kendall. We're happy to answer any questions, and welcome all your comments! The one thing we don't want is to be isolated from our friends and family. I've been that person who thinks it is easier to just ignore a child with special needs and their family. I've feared hearing their story. I've been guilty of looking through a child with special needs. I've also thought and said "how on earth do you deal everyday?" Although it certainly isn't easy, we are a normal family...celebrating all the milestones our daughter hits (and maybe cheering a little louder in the process!) Let me tell you...it's been a long road with many bumps but the love and support we receive daily is what keeps us truckin'! Click here for the full story on our precious baby girl Kendall Ann, or scroll down for the quick recap! Thanks for visiting!
more music please!
clearly before keto diet and diabetes
Kendall Ann has blessed our lives in so many ways. She is truly a gift from God and has proven herself to be a fighter from the beginning. She was born with many neurological and optical abnormalities, which we now know is due to a stroke in utero...probably due to her Factor V Leiden mutation and two copies of the MTHFR gene (1-14-09).Oh, and NOW she has Type 1 Diabetes (8-19-09) And NOW (12-16-10) she has problems with her Mitochondria ... and NOW (2-11-13) a neurogenic bladder resulting in a vesicostomy. Of course there is apossibility of a Mitochondrial Disorder, and a possibility CDLK5 caused all the problems and Mito secondary...but we will never know, because we've decided no more testing! When she was born she came right home...no NICU stay...and we had no idea anything was wrong! She has undergone numerous hospital stays and a number of surgeries, but through it all, she has maintained a smile that wins the hearts of everyone who meets her. Please join us in our journey of life with a special little girl full of spunk and personality who happens to have multiple disabilities.
I like to say I'm a party- girl-turned-career-girl-turned-stay-at-home-mom to a son who's gifted and talented, and a daughter with special needs. My hubby levels me out, and I'm a lucky girl to have found him.(I kissed a lot of frogs!)
I love my life and all it's chaos. My family and close knit group of friends help me get through every day! I'm getting better accepting that God's plan isn't always my plan...and alcohol sometimes helps :)