Thursday, August 27, 2015

An Overall Update - failure to thrive, kidneys, GI issues, sleep apnea

I cannot believe that it has been over a month since I last updated the blog.  Things have been chaotic over here so I am going to just pump out a big fat update.  Normally, I like to add in a lot of cute pics, medical photos, and lots of resources, but I will skip that for now.  Forgive me?

Obstructive Sleep Apnea:
Operation CPAP has been a massive fail.  Am I shocked?  Nope!  We had a sleep clinic appointment back in July to discuss options.  I consulted with a sleep tech who works specifically with getting children to wear their  CPAP face masks.  We made sure that the mask was adjusted properly, but I pretty much had to restrain Ellie the entire time.  The doc witnessed the huge fit that Ellie pitched when I attempted to bribe her to wear place the mask over her nose.  I considered it a HUGE success that she actually wore it for an entire minute in clinic.  The thing is, Ellie wore it more when we first started this CPAP desensitization and she has become progressively more frisky and clever at yanking it off.  Did I mention that this is just the mask?  As in the mask isn't hooked up to the machine and the machine turned on?  Oh I didn't mention that?  In speech therapy a month ago, we were able to get her fully hooked up with the machine on for 10 seconds - with us holding her hands down and her crying.

At this point, we are waiting for her to undergo something called a Cine MRI while under sedation.  This MRI will look at the anatomy of her upper airway and how it works while she is sleeping.  We will use these images to identify what structures are causing the most obstruction.  From there, we will determine what type of surgery will best alleviate her sleep apnea.  Sounds like fun!

My "baby" started Kindergarten!

Weight and Failure to Thrive:
When we last left off, we were starting Ellie on an appetite stimulant.  Can I just say that on day 5, things started to happen.  I have never ever seen a child each so much!  Ellie's starts eating dinner at 4:30pm and will continue to eat until 7pm.  She is back to eating breakfast, now lunch, and occasionally a snack. Her current breakfast is what she used to consume in an entire day.  I do not know where she is putting it all.  Like a bottomless pit.  Human garbage disposal.

Because of her hunger, we are now able to get her to try new foods.  She has always been a picky eater and that includes freaking out over different foods intermingling with each other - like having icing on top of her cake.  Or pretty much having something other than Nutella touching bread products.  So I about passed out from shock when she stole my healthy spaghetti bolognese, and just chowed down, I was shocked.  Different foods of different textures all touching!

This past Monday we went in for her well child check. Even though she has been eating like a teenage boy going through a growth spurt of the past 6 weeks, she has not gained any weight.  Not even an ounce and her height has stayed the same.  I was shocked.  She is eating so much and I thought that her face looked much fuller.  So she still has not gained back all the weight she lost back 15 months ago, BUT she isn't losing any weight so that is something.  I am still placing the blame at whatever is going on with her GI tract.

GI Issues:
When will it ever end!?  The basic update is: we still can't get a handle on it.  She is still requiring lots of intervention which also include enemas.  I am frustrated.  Andrew is frustrated.  The pediatrician is frustrated.  In fact, her pediatrician is so frustrated that she called Ellie's gastroenterologist herself.  At every visit, for the past 15 months, her GI doc has said "if she doesn't gain weight, then we will do an upper GI to officially rule out celiac".  We have had 4 visits since then and quite a few phone calls - each time Ellie has not gained weight and each time he has delayed the upper GI.  After speaking with the pedi on Monday, he has decided to rule out tethered cord (abnormal attachment of the distal portion of the spinal cord to surrounding tissues ordering) by ordering a MRI of the spine.  Unfortunately, due to scheduling issues at the imaging center, they are not able to do the spinal MRI the same day as her Cine MRI.  I seriously doubt she has a tethered cord as she does not exhibit any other symptoms such as dimples or hair patches on her lower back, weakness of her legs, or obvious changes in her gate, but it is important to rule these things out.  She does have signs of urinary retention (more on that later) and of course the GI issues.

Now this all brings me to my next topic:

Decreased Urination:
Ellie hasn't been what one would call a "frequent" urinator in the past couple years.  She has been able hold her urine for 4- 6 hours for ~ 2 years. Then the time between voids grew farther apart.  Last year, for instance, she would pee 2-3 x during the day and then over night.  When she did urinate, it was huge.  She as having to wear nighttime pull-ups during the day because of her adult-sized bladder.  The past 3 weeks, however, things have changed.  She has been waking up dry.  I thought this was a huge potty training milestone.  Basically, she is now peeing once very 18-24 hours.  She may pee at 4pm and then not pee again until 12 noon the following day.  When she does pee, it is a fair amount.  As in it fills up a diaper.  She will be 6 years-old in a few weeks.  She drinks plenty of fluid for a 30 lb kiddo.  She should be peeing much more.  More in terms of both frequency and in volume.

She is signing "school" and "dance".  Someone was excited for her first day!

I brought this issue up with Ellie's pediatrician.  Ellie isn't potty trained so I do not believe this is an issues of 1. her going and not telling us or 2. holding her urine on purpose.  It is most likely some urinary retention caused by either one of her medications or by constipation rather than a kidney issues.  However, it is important to assess her renal function.  So in addition to Ellie's annual CBC and thyroid panel, we are adding in lab work that will look at her kidney function - think BUN and Creatinine.  A renal and bladder ultrasound has also been ordered.  I know from a previous abdominal ultrasound back when Ellie had her weird clay-colored stools that her kidneys are small for her age (but not necessarily small for someone her size).  The good news is that this ultrasound can be performed the same day as her Cine MRI.

So how's that for an update?  I hope to report back more late next week with regards to the cine MRI and ultrasound.  Until then, fingers crossed that we get her spine MRI on the schedule soon!

More on Ellie's GI Issues:
Sitzmarker Study and Delayed Colonic Transit.
Stomach Issues, Surgery, Anorectal Manometry

More on Ellie's Sleep Issues:
Sleepless in Austin
Polysomnography, Sleep Study Results, Obstructive Sleep Apnea and other things
CPAP for Obstructive Sleep Apnea
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Wednesday, July 15, 2015

What happened to my Chunky Chicken?

Those of you who were following The Chronicles of Ellie Bellie Bear "back in the day" know that my Ellie was and still is affectionately referred to as "The Chunky Chicken".  She came by this nickname because she was, well chunky.  She had delicious rolls of fat.  My wee little, chubby, sweet cheeks Ellie Bear.  Thighs that you could just munch on.  My Bear was CHUNKY!

Don't you just want much on those cheeks???

Rolls of baby fat!

As with all children, the fat tends to melt away as they grown in height and age.  The baby face disappears.  Usually, the big belly follows, but in the many cases of those with low muscles tone and Down syndrome, the buddha belly is a permanent accessory through adulthood.

Now, my Chunky Chicken has skinny little chicken legs and skinny, little bony chicken wings for shoulders.  Her upper ribs are sticking out of her chest.  She is "chunky" chicken no more.  My almost 6 year-old daughter barely weighs 30 lbs and is in 3T-4T clothing!  She is pretty much wearing the same clothes that she wore last year except for a few items that are now too short.

No more baby face as Ellie is now a "big girl"

Growing up, I was always a skinny little runt.  I barely registered on the growth chart for both weight and height.  So it would have been no surprise if my own daughter was a bit on the petite side.  For Ellie, she barely registers on the growth chart (typical and Ds chart) for weight and is around 70% for height on the Ds growth chart (okay, she is now 50% on height).  She wasn't always that tiny.  Over the past 12 months, I have watched her weight plummet and then has super tiny growth spurts of gaining a few ounces, dropping a few ounces.  I know that I blogged about this last year when we were dealing with GI issues.

This is a Down syndrome growth chart for girls ages 2-18 years
You can see that she has fallen off and flat lined this past year with her weight.
For her length, the velocity of growth is decreasing and she fell from 75% to 50%.

How her numbers look on a typical growth chart [ Right] as well a calculation of her weight:height ratio [Left].
As you can see, the Ds Growth Chart gives a more accurate portrayal on where she falls within peers her age who also have Down syndrome.

The GI issues haven't changed much other than there have been no new hospitalizations related to constipation (a huge success in my book).  She has a few good weeks of regularity followed by either explosions running down her leg into her boots (we have gone through more pairs of shoes this way) to then 4-9 days of being completely blocked up.  That being said, when she does go a while without a bowel movement, we have seen success with either 2 suppositories or 2 nights of enemas vs. the usual 3 enemas or hospitalization.

The thing is, girlfriend eats.  She is chowing down on a croissant with Nutella in this pic.  Now she may not eat much compared to another child her age, but she is eating more than she was a few months ago.  Actually,y she ate a ton a few weeks ago while visiting my parents and a tried several new foods so I was pretty shocked to learn that she only gained 2 ounces in the past 6 months.

The thing is, 15 months ago when things were really bad, she didn't lose any weight.  July of last year was like a light switch went off.  Ellie had anorectal manometry under anesthesia to rule out Hirschsprung's (which she doesn't have) and then didn't go for 9 days.  In one week, she lost 1.5 lbs and then continued to drop through September, reaching 28.5 lb (original weight 32.5).  With us diligently staying on top of her constipation, implementing various feeding techniques, and trying to add calories to her diet, Ellie's weight has finally crept back up to 30 lbs.  However, we learned at her follow-up GI appointment last week that she only gained 2 ounces since her last office visit . . . 6 months prior.  This is frustrating because Ellie is actually eating more (still not as much as a typical 5-6 year old) - both in quantity and in variety of foods.  Because of this, Ellie gets to keep her Failure to Thrive label and we are starting her on Periactin.

This is how Ellie's BMI falls on the pediatric chart.
I have no idea if there is a BMI chart specific for individuals with Down syndrome.

I knew that Ellie was thin, but she was always wearing t-shirts or dresses and with her buddha belly, she never looked terribly skinny.  So, I never truly realized how bony she was until I snapped this pic of her in a halter top.  Granted, she is running and moving her arms back-and-forth which I believe accentuates her boniness.  

Periactin or Cyproheptadine is a type of antihistamine that also has anticholinergic properties and an affect on serotonin.  So yes, it is used to treat allergies, but it also has great success in the treatment some psych related issues such as serotonin syndrome and also treating in pediatric migraines.  One side effect to Periactin is weight gain.  It is considered to be an appetite stimulant for people who have poor weight gain.  We have discussed this med periodically in the past year, but were reluctant to start her on it as one of its major side effects is constipation.  Right. . . . let's put the kid who doesn't poop for 9 days on a med that causes constipation!  However, we are at a point where even though she is eating more, it still isn't enough and she is not putting on the weight.

She still fits in the dress on the left, but it is a bit shorter.
Same shoes and still too big!

As her doc has been saying repeatedly "if she doesn't start to gain weight in the next x # of months, we will do an upper GI to completely rule out celiacs" -- well, those x # of months keep changing and  I personally feel it is time to officially rule out celiac, especially since her upper GI from 22 months of age showed small white blood cell focalization of the small intestine which could have been an early indicator.  Why is he dragging his feet?  I am not sure, but we will revisit the upper GI in 6 months if she doesn't start putting on the pounds.

My little picky eater ate 5 bits of brisket this past weekend and tried raw onions.
Truth: she spent more time playing with the onions and pickles than eating - telling us "circle".

*Update: We are day 5 into the periactin and haven't really seen anything yet.  In fact, it has made her constipation worse and she is eating less than before this medication.  I can provide her with opportunities to eat, go through all of the techniques we learned speech/feeding therapy and in the end, I cannot force her to eat orally.  Right now she only gets it at night because it can cause fatigue.  We will be increasing it to twice a day by the end of the week.  I am told that can take a few days to increase her appetite so fingers crossed that we start to see some big changes in her appetite and in turn, weight.


Monday, July 6, 2015

Quick Updates All Around: Travel, Lice, School, Friendship, and the passing of Amelie

I started this post about lice.  Yes, LICE.  As in Ellie had lice a few weeks ago.  That post isn't completed. . . yet. . .  but I decided to write about more mundane, and less disgusting things today.  Such as, what we have been up to the past few months!

In May, we had Ellie's IEP meeting.  You can learn a little bit more about it here.

It was also my darling, Tabitha's birthday.  My forever daughter in Russia turned 5 years-old and may or may not have aged out of the baby orphanage and transferred to an institution.  Given the adoption ban, I no longer receive updates on this sweet girl.  If any of you happen to know how she is doing, please contact me.

Andrew had a huge conference in Vancouver, B.C towards the end of May and I got to join him halfway through!  My mom flew down to care for Ellie so that Drew and I could have a mini getaway.  This is something we haven't done since Ellie was a baby and it was the longest we were away from her.  We had a lovely time eating out, checking about the water, and meeting up with my friend Lisa.  We went to the Capolano Suspension Bridge which is a huge deal.  I am petrified of heights.  I had this idea that I would swoon from the fear, crack my head open and then fall to my death.  Thankfully, that did not happen.

While we were gone, Austin and the surround areas were hit with record rainfall.  There was massive flooding just to the south of us.  At one point I-35 was washed over.  We had friends lose everything.  People were missing.  We were fortunate that the only damage we had was to our garage.

Bear graduated out of PPCD [preschool preparedness for children with disabilities].  I would love to tell you that she had a big graduation complete with cap and gown, but there was really nothing to mark the day.  She does have a few days of summer school that last about 2 hours/day for 4 days/week for 5 weeks out of the summer.  During her down time, we are having a grand old time with friends.

Girl's night with Sheryl & Rita at Cru Wine Bar

The not so fun part is that all of these doctor's visits seem to have snuck up on us.  My personal favorite is the dentist.  Ellie is usually such  little toot.  Screaming, thrashing, biting - and that is just a daily thing at home with me brushing her teeth.  So imagine my surprise when Bear cooperated for a dental cleaning - tooth brushing, fluoride treatment, flossing!!!

Then of course there was the lice incident, but more on that later.  Let's just say it was horrendous nit combing her hair and taking care of all of her hair accessories - hats, headbands, bows, horse helmet.  

It was very fortunate that the lice infestation was caught the week before our much anticipated trip to St. Louis to visit my parents.  Could you imagine bringing lice to another person's house?!  Ellie and I traveled to St. Louis sans Andrew.  Andrew had just returned from a business trip and needed to put in a bunch of hours at work and he also had great plans to work on the laundry room (this would be the laundry room that was gutted back in late December and the one that I blogged about in March).  

The Chunky Chicken was a rock star on the plane and behaved really well when we went to places like Kaldi's Coffee and this restaurant out in Washington, Missouri to visit my Uncle Robert and Aunt Sue.  Our visit was quick and we didn't get to see many people outside of family.  Ellie tried a ton of new foods - hamburger, deli chicken, alpine cheddar, gluten-free cookie.  I noticed that she did this the last time we went out of town back in March to visit my best friend.  Maybe the change of environment and being around new people make her a bit more adventurous?  We also managed to wear her out because she was going to bed between 6:00pm-7:00pm!

I ended up going with the white and the black mug from
The Shack, but I think I should have sprung for the red one too!

Unfortunately, a huge shadow was cast upon this trip.   My beloved 7 year-old tortoiseshell rescue kitty was compassionately put down.  To be so far away and not get to say good-bye was and has been rough.  The return home was extremely upsetting.  My spunky kitty didn't run to the door to great me.  She will never burst through the dog door and "chirp" at us.  She will never sleep on top of me again.  

Amelie was our honeymoon kitty.  The day we got back from our honeymoon, Andrew and I went to PetsMart to pick up dog food for Rodeo (?-2009) and kitty litter for Tama.  I walked out the door with Amelie in tow.  My little rescue kitten had a whole lot of spunk and personality.  Just after Ellie and I left for St. Louis, Andrew noticed that our Ame wasn't eating and seemed less energetic.  She used to sit on top of the fridge instead was laying around on the floor or on Andrew.

She arrived to the vet dehydrated, constipated, with a temperature of 95 (normal cat temp 100.5-102.5).  It was assumed that she had some sort of infection that entered her blood.  After a bunch of labs, it turns out that she was not septic, but was in kidney failure, most likely due to congenital polycystic kidney disease.  After intensive treatment, it because apparent that Amelie's body was shutting down (she was 91 degrees by the end) and we opted to compassionately ease her suffering.  It was really hard for Andrew to see her like that, but he was with her in the end when she gave him one last "meow".

I miss her so much, but I know that she is now playing with our dog Rodeo and curling herself up in his tail like she used to do back when she was a tiny kitten.


Wednesday, June 24, 2015

Guest Blogger: Fear and Isolation

My friend, Michelle, wrote this emotional post on Fear and Isolation on her blog The Hailey Herald last week and has granted me permission to share it on The Chronicles of Ellie Bellie Bear.  She is a mother to 3 beautiful children - 2 boys and a little girl with a little something extra who reminds me so much of Ellie.  I really identified with her writing - "oh my goodness!  How did you know that is how I feel sometimes!?"-  and I imagine that many of you can too.

The Hailey Herald
Fear and Isolation 
by Michelle

Today, I'm going to touch on something I haven't felt in a couple of years.  I probably felt it the most when Hailey was first born, those first few fragile months.   Those first months while we watched our daughter almost holding our breaths...not sure if heart failure was going to be slow or fast...not sure when open heart surgery the same time, we dealt with the shocking news of a Down syndrome diagnosis.  Those first few months were isolating.  I felt alone in the world.  I felt like no one knew what I was going through.  I felt different than all my friends with typical children.  There is no way they could understand what I was going through.  I felt like an impostor with parents with other children with Down syndrome because I wasn't sure how to navigate that world.  The isolation made me angry...made me sad.  It enveloped me at times.  I couldn't sleep and I turned to lots of Graeter's ice cream at 3 in the morning to make it better (no, that didn't really work either).  Hailey's open heart surgery was finally scheduled and life moved on.  The feelings dissipated some.  I had other things to focus on.  I had a healthy little girl who had tasks that needed accomplished.  The boys were back in school and we had two soccer schedules to juggle.

I remember the isolating feeling returning a couple of time over the past 4 1/2 years.  I don't remember it lingering though.  I think it reared it's ugly head when Hailey was crawling and then again when she started walking.  I know I've dealt with it some waiting for my daughter to learn to communicate.  Since the very beginning though, it never stayed.  It was a thought or two and it was moved to the back burner again.

Last week, however, the overwhelming, smothering feeling returned.  It hit when I wasn't looking and it hurt.  It stopped me in my tracks.  I have a feeling when it started.  We were out and two little girls were standing beside Hailey that are just a little older than her.  There was one on each side of her.  They didn't speak to her, they just stared.  They didn't interact with her...they just laughed and ran away.  No, they did not do anything wrong, but I could see it.  They saw the differences with Hailey and there is nothing I can do about it.  I can't make kids like her.  I can't make kids play with her.

The next day, it hit me that Hailey does not have any friends.  No typical friends that she has play dates with...she occasionally has play dates with kids that have Ds, but let's face it, that is not the real world.  The majority of Hailey's world is with people who are typical.  I have to find a way to build up Hailey's community.  Hailey needs typical friends.  She does well at school with the typical kids, but she doesn't get invited to any of their birthday parties and she's only 4.  How will it be at 5, 6, 10?  Will it be better when she's in a school environment and not just preschool?  Will it be worse?  It makes me anxious and gives me a panic attack just thinking about it.  I suddenly feel like I'm that brand new mom in the world of special needs.  I feel like I'm starting all over again.  I feel alone again....I feel isolated.

Fortunately, I know what triggered this and I knew what the issue was.  I also realize that spending a TON of time at home this summer (due to attempting to potty train Hailey) is compounding the feeling of's can be isolating spending so much time in the bathroom at home with your 4 year old.  I'm partially through this episode and I'm working on a game plan.  Unfortunately, I know that isolation and fear will come back again.  Maybe next week...maybe next month...may not be until next year, but it will return.  I know I am not alone in these feelings, but sometimes they just stink.

In the end, I know I am not alone.  This world may have it bumps and it is not the road I planned to travel, but with this little girl leading the way, it is bound to be full of smiles, dimples, laughter, fun and hugs.

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Monday, June 15, 2015

Parents Shaming Parents: IEPs and schooling decisions

Yes, we are here!  We are still alive!  I know that it has been well over a month since I last posted.  Here is the thing, I wrote most of this post about a month ago then I sort of got side tracked and well, life happened.  This post is something that was difficult for me to write because it is a "hot topic" and I am shy in the face of conflict.  I welcome discussion, but this post is absolutely not about the school system and what educational placement is best for so-and-so.  Rather, this post is about something I have been witnessing amongst parents for a while now and it really came to a head these recent months as we prepared for Ellie's transition IEP into Kindergarten.

Jane Doe : “I have an 8 year-old daughter with Down syndrome and she has full inclusion at x school”.  

The above statement runs rampant in several Facebook groups related to Down syndrome or special needs.  The introduction includes the kid’s name, age, and if they have full inclusion at their school.  Well, you only list their schooling if they are in full inclusion.  If it is partial inclusion or full seclusion, forget about mentioning it to the masses.

Now, say that you are to introduce yourself  in a Facebook group:

Johnny Appleseed: “I live in Austin, TX and I graduated summa cum laude from an Ivy League school.”

What is that???  Seems pretty pompous, right?  Bragging.  Snooty.  Gives an air of superiority.  Leaving people wondering why on earth this person is announcing their credentials during a basic introduction.  It isn’t like you all asked where this person went to school! 

How is Jane Doe’s introduction of her daughter any different?  It isn’t.  Why do some parents feel the need to take on their child’s school placement as a badge of honor?  What if you kiddo spends 50% of their time in a special education classroom?  Or 100% of their time fully secluded?  Does that make your child “less than”?  Does that mean that you are less successful?

Whether or not a child is in a fully inclusive environment or a self-contained environment doesn’t mean a whole hill of beans.  Your child’s school placement is not  a reflection of your self  or your success as a parent.  It is, therefore, not something to be touted about either.  So leave it out of the introduction.

This brings me to something that has been heavy on my mind lately.  It is what we as special needs parents and educators refer to as “IEP season”.  IEP stands for an Individualized Education Plan.  The emphasis being on Individualized as in a “not one size fits all”.  You will hear horror stories about schools railroading parents into placing their kids into a fully secluded classroom because that is just “what they do with all kids who have a disability”. You will also hear about wonderful teachers who truly want what is best for these kiddos and will fight tooth and nail to get that child what she needs.  You will hear about LRE [least restrictive environment], which is truly open to interpretation by the parents and by the schools as well as mainstreaming and inclusion.  However, this post in not about the schools or school placement or LRE-that is a whole other blog post.  This is about the parents.  How parents are treating other parents when it comes to educating their child with special needs.

Facebook can be a great source of support for parents, but it can also be a place of shame.  Arguments are popping up like dandelions all over my newsfeed and it makes me sad.  

There are two schools of thought:
  1. You should fight for total inclusion and if your child isn’t in a general education classroom with /without support, you are doing a disservice to your child.  You are not setting them up for success.  You are not fighting hard enough.  Or your school isn’t good enough and is breaking a gazillion laws. 
  2. You are being completely unrealistic if you think your child will thrive in 100% inclusion.  She has a cognitive disability.  She needs to be pulled out for more 1:1 education or she will otherwise sit in the back of the classroom not learning and will be disruptive.

Oh Wow!  Damned if you do and damned if you don’t. 

There is not legal definition of what exactly “Inclusion” entails.  No step by step direction on how schools must implement inclusion along with LRE.  This can be a great source of anxiety as well and frustration for us parents.  We need each other’s support, not shame. 

First, a brief breakdown of terminology: 

Full inclusion is a child being included 100% in the general education classroom with typically developing peers. Inclusion for many may look like having a 1:1 aide or an aide amongst 3 kids with special needs, or moderate classroom adaptions.  Among parents, it is often pushed as the gold standard for special education.  Maybe it is the gold standard, maybe it isn’t.  That isn’t what this post is about. The biggest complaint among parents is that the schools will not help their children be fully included in every general education class.  That some of these schools look at the disability label of their child and put her into this little box saying that she need to have her education in the X classroom.  

Full Seclusion involves a special education classroom with all kids who have special needs.  It is full seclusion when there is no time spent in the general education classroom.  This is something that many of us parent struggle with.  There are several studies that do not support this type of academic setting.  Children need to be included with their typically developing peers — this is to the benefit of BOTH those who have special needs and those typically developing kiddos.  However, there are some parents who know that their child will thrive if the majority of their time is spent in this type of setting.  

Then there are the in-betweens - also referred as mainstreaming or partial inclusion — spending most of the time in the general education classroom with “pull outs” into a resource room or the spec ed classroom for more 1:1 teaching on specific subjects.  i. e. “Sally will spend x minutes in the general education classroom with pull outs for Math”.  Or you can have the opposite where the majority of the time, the child is in a special education classroom and is “pushed in” the general education classroom for certain subjects.  For instance, “Ellie will spend most of her time in her Functional Academic Classroom [FAC - spec ed classroom] with push-ins for art, music, social studies, and science.”  When she is pushed in, she will have an aide accompany her for added support.  

I will always fight for my little Bear.  

I know that many of you reading this have an idea on what educational setting that I described above is ideal for your child and some of you are not sure - either way, that is okay!  Just please, this is NOT about the school system and these different classrooms or what the school is/isn't providing your child— like I said, that is a whole other blog post.  It is how the parents behave towards other parents.  It is about needing to support each other as we try to navigate the complex maze of the school system in working towards enabling our children to learn in the best way possible while developing healthy peer relationships.

There are SO MANY ways to help a child reach her maximum potential.  Each child is an individual and as such there is no “magic” school setting that is best for every single child.  Rather, the setting must be adapted for each child; catering to her strengths, weakness, and learning style.  What am I saying here?  Let us stop belittling parents for the choices they make.  Let us stop shaming parents when they decide they need to go up against the school and fight for what their child needs — whether it be full inclusion, full seclusion, going to their home school, or going to a “better” school 20 minutes away.  Let us no longer tell a parent that they are “not doing enough” or that they are “setting their child up for failure”  or that they are "being unrealistic" because their child’s education plan doesn’t match your child’s or is what your idea of a perfect IEP is. They are doing the best that they can.  They want the same thing as you — what is best for their child. Instead, can we all just support each other?  Say “I have been through this too and it is exhausting and draining.  You need to do what is best for your child individually and I will support you.”

So, what happened in Ellie's IEP meeting? The one that I didn't post about on Facebook because I "just didn't want to deal with the drama"?  It went well.  I was all prepared for a battle, but I didn't need to be.  We all went in knowing how Ellie learns best, her strengths, and her weaknesses.  Where her challenges lie and what she excells at.  We have opted to have Ellie attend a school outside her home school about 20 minutes away.  This school has a more inclusive environment in which she will be "pushed in" for art, science, social studies, lunch, recess, and music - pushed into the general education kindergarten.  For the remainder of the time, she will receive more 1:1 instruction in the FAC classroom which has 8 kiddos with special needs, ranging from grades K-5 and reverse inclusion for reading and adaptive PE.  This is what we wanted for her.  We want Ellie to have interactions with typical developing peers, yet we know that she gets overwhelmed in large classroom settings.  She freezes up and then acts out, unable to learn.  We know how her ADHD drives her.  Full inclusion would not be a good fit for her, but full seclusion wouldn't be either.  We needed something in the middle and we are excited for what lies ahead.