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 was...at 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 isolation...it'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. 



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Monday, April 20, 2015

CPAP for Obstructive Sleep Apnea

Has it really been over a month since I last blogged about Ellie's sleep issues???  Apparently, it has.  This is where we left off: Treatment plan and health risks associated with obstructive sleep apnea [OSA].  To learn more about Ellie's sleep issues, read here.  But first, a few little photos from Easter:





We finally got in to see Ellie's ENT doc at the beginning of March.  Her sleep specialist fought to get her an appointment back in mid-February, but the ENT was out of town.  Anyway, the purpose of the ENT appointment was to evaluate whether or not Ellie's adenoid had grown back.  If so, we would then proceed with a repeat adenoidectomy (because surgery is so much fun!) in hopes that would "cure" her OSA and "oxygenation instability".  I had 2 choices: lateral neck x-ray or a flexible nasal laryngoscopy.  I went with the laryngoscopy.  Yes, it sounds mean, but it is quick.  It provides more detail information.  Plus no radiation is involved. Plus, I have this perverse obsession with seeing people's insides (it is the nurse practitioner in me - especially being a former ENT NP).

Ellie's procedure was the pic on the right.

This is how it went: the nurse kindly sat with Ellie.  Her legs over Ellie's and her arms around Ellie's. I then stood behind the nurse with my hands holding Ellie's head straight. Now, a laryngoscope is essentially a spaghetti-like noodle with a camera on the end.  It passes through the nose and looks at the structures of the upper airway.  It can be used to diagnosis enlarged adenoid and tonsils, enlarged base of tongue, laryngomalcia (floppy airway), abnormalities of the vocal cords, and even reflux.  How did Ellie Bear do, you ask?  Well, she fought it all while screaming "NO THANK YOU!  NO THANK YOU!  NO THANK YOU!"  Girlfriend is nothing, but polite.

The findings were not what I was hoping for.  It may sound strange, but I wanted that adenoid to be there.  She is obstructing.  She has had nearly nonstop sinus infections again since August.  If it had regrown, we could have "easily fixed" it.  Nope.  The adenoid did not grow back.  While she does not have an abnormally large tongue, she does have a large tongue base.  She also has not only a high arched palate, but a long palate that dips into the upper airway.  At rest, between the tongue base and the palate, she is already in a partial obstruction - this is while awake and upright.  With sleep, the muscles relax and while laying down, it allows everything to collapse back into her airway.  We also learned that she had reddening of the epiglottis suggesting reflux.  Goody.

Depicts large tongue base causing obstruction of air flow
Photo courtesy: Dental Magazine - unable to find vol #

Take the above pictures and add it to the pic below and that is Ellie's anatomy

Depicts soft palate obstructing air flow

So guess what we have been doing these past few weeks?  CPAP mask desensitization!  The fun never stops.  By the time all was said and done - the doc writing the script, insurance approval, equipment ordered, and equipment training, we finally started on March 26th to desensitize Ellie towards wearing her CPAP mask.  Let us pause for a moment to think about how that.  Desensitize.  Ellie.  Is it going to take years like bath desensitizing did? Save me now!

It's Fighter Pilot Mickey


Continuous Positive Airway Pressure [CPAP] is considered to be a type of ventilation therapy in which positive pressure is blown into the airway as a treatment for obstructive sleep apnea.  We are trying what is called a "Pixi" mask.  This is a mask that fits over her nose only, as opposed to a mask that fits over both the nose and mouth.  You need to create a tight seal or otherwise the pressurized air will leak around the mask.  If she starts to mouth breath, the air will escape so there is a strong possibility she will need the full face mask. 

During Speech and OT.
We have adjusted it since then so that it isn't digging into her face.

You can just imagine how this is going.  My daughter has some significant sensory avoidance issues when it comes to her face, hair, and head.  Tooth brushing requires some interesting gyrations, which involve my legs over hers and my arm holding down her arms.  Combing or washing her hair is considered a form of torture.  Now she has to wear a mask over her face?  One that blows pressurized air into her face?  Right. . . 

Co-therapy between speech therapist and occupational therapist
in the sensory gym.  Also trying out a compression vest since Bear has
been behaving like the Tasmanian Devil on steroids.

So desensitizing is a  s l o w  process.  A step by step approach.  Ellie is to build up to wearing her mask for 15-20 minutes, 3 x day.  Then we add hooking it to the machine and turning it on - again 15-20 minutes, 3 x day.  After that, falling asleep with the mask hooked up to the machine and turned on.  We are making progresses. . . sort of.

"yeah, I'll totally wear it if Papa is next to me."

At therapy (ST/OT), she will wear the mask without too much difficulty.  She has worn it for 2 therapy sessions for ~30 minutes!  At home, she will touch it, but shout "NOOOOO!" when she sees me hold it.  She will allow Mickey Mouse to wear it. She will try to put it on Minnie Mouse.  Once, she tried to put it on herself - in the waiting room at therapy.  Apparently, she associates therapy with the CPAP mask now.  Once, she allowed me to put the mask over her face just before we went for a ride in the car.  I am also able to place the mask on her once she is already asleep, but am not able to turn on the actual CPAP.  Progress is progress.  No matter how slow it is.  

Traitor!  You said this would be fun. You said I was going to be a fighter pilot.
Our sleep doctor told us to follow up in 2 months time.  It is said that if she will not wear the mask with CPAP within 2 months, she will most likely never wear the mask (well at least in the near future wear the mask.  Maybe in 10 years she'll wear it, but that doesn't really help the now).  That means Ellie would have something called a Cine MRI, which is basically an MRI in motion to look at the airway while the patient is under deep sedation.  The Cine MRI helps determine if surgery is necessary and if so, what part of the upper airway needs to addressed.  So yeah, I want the CPAP to be tolerated and to work.


My little dancer who recently discovered her shadow.




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Wednesday, April 8, 2015

Connecticut, Friends, New Foods, and a DIY Laundry Room

It has been far too long since I last wrote.  Life seems to be speeding by at a fast pace lately and I don't want to miss one minute of it!  Every time I sit down to write, I am called away and as such a few weeks pass and so here I am trying to get all caught up on writing.

Earlier in March, Ellie and I headed off to Connecticut to visit my best friend Megan for Spring Break while my husband stayed behind and installed a ridiculously large hot water heater (Yes, this would be the hot water heater to replace the one that went out back in December.  Yes, I said December.  Yes, I have more pictures with a story behind the laundry room demo, but that is another blog post all together.).  I also have the most awesome laundry room sink, but those pics will come later.  As in once the laundry room has walls and the sink is hooked up and well just check back in a few months.

My beautiful, energy efficient water heater.
It is actually located in what used to be a doorway to a closet.

Our ridiculously large water heater wouldn't fit in the original laundry room.
So we knocked down a wall that connected the old laundry room to a closet.
The washer/dryer are in the old laundry room and the water heater sits in what used to be a closet.
Moving on! Ellie and I took a 6 hour long flight to Hartford where I was finally reunited with my best friend.  It had been years since we had last seen each other and while "distance makes the heart grow fonder", I really wish there weren't so many miles between us.  Megs, I am signing the "Lonely" song for you right now.

Aren't they beautiful?  You know what?  Megs is pregnant in this pic!
I am going to be an "auntie" again!

The Chunky Chicken was awesome on the flight up there.  We had a 2 hour layover in Atlanta and that was fun.  Well, not really and I have a few words over Southwest Atlanta's idea of what "disability pre-boarding" is. (Let's just say that they let a bunch of other people [like 30] from another plane board before the 3 people in the wheel chairs and the teenager on crutches.  Seriously, I got all assertive and respectfully asked the attendants just how far these people were supposed to walk to their seats and how much of a sensory overload meltdown do they want to see with my Bear?  The pilot overheard me and requested everyone in the front row of the plane to move back to accommodate those with ambulatory difficulties.).  Anyway, to distract Ellie from all the noise, the altitude pressure, and a small closed in area with a gazillion people, I implemented most of the strategies that I outlined a few years ago with regards to flying.  Although not the passenger escort tip.  Nor the carseat.  Girlfriend was in her seat solo and was pretty proud of being a "big girl just like mommy".

Traveling with a Toddler Part 1
Traveling with a Toddler Part 2

Amazing things happen when you go to a new country. . . er. . . state.

Megan's son, C, is around the same age as Ellie and I cannot get over how much he has grown.  Of course, the last time I saw him he was 6 weeks old!  It was really good for Ellie to be able to play with another kid her age and being able to see him go through the day-to-day activities such as sharing meals together, bedtime, bath time, car rides, etc.  Since Andrew and I cannot provide Ellie with a sibling and our play dates are few and far between, this was quite the treat for Ellie.  As as well as quite the developmental nudge that she needed.

Hanging out at Bertucci's. Bear touched and licked pizza twice.

During the visit, Ellie tried a bunch of new kid foods such as pizza.  She didn't like it, but she tried it twice.  We are talking about melted cheese, tomato sauce, and crust all together.  Like 3 foods touching each other. TOUCHING!  This was HUGE! She also tried and loved: a hot dog, multi-grain crackers with Havarti cheese, and penne pasta with artichoke sauce.   She actually just hopped into my lap and devoured half of my pasta. . . my dinner. . . she stole it.  I about peed my pants with shock and excitement.

AND she slept!  As in all night for more than 5 hours at a time. On a fold out futon.  In a strange place aka the playroom.  She slept past 2:30am each night.  Did I mention that Bear slept!?  As in sleep.  As in shut eye.  As in counting your Z's. It official, y'all! We are moving to Hartford and into Megan's house for my own sanity's sake.  Megan, here we come!

"My darling C with those puppy dog eyes.  I just love you.  I will sit so nicely next to you
in this cart and share my cracker with Havarti cheese with you."


Oh and girlfriend sat in a Costco grocery cart without screaming, standing, or climbing out.  Nor pulling food off the shelves.  Or pitching a fit. Or me having to bribe her with ice cream.  Why?  Because she was  in-love.  "Oh my darling, C.  You are so handsome and strong and sitting in that cart so nicely.  I must sit next to you and make eyes at you.  Sigh. " 

The most heartwarming thing was to see C and Ellie play together.  C would come home from school and ask to see his friend Ellie from Taxis (Texas).  He treated her just like any other kid, which is sadly something we no longer see too often, even amongst family.  C is a little charmer with a  big heart and these big brown eyes that seemed to hypnotize Ellie into being on her best behavior.

After going to the Kid City Children's Museum, we checked out this local cupcakery.
Bear was so excited to see the mini-chocolate iced cupcakes.  Strangely, she didn't eat more than 1 bite
of the cupcake. I am questioning whether or not she is truly my child.


For myself, I have to say that most exciting part of the trip was the lack of electricity for several hours.  You know, when you have a well that runs off an electric pump so that you not only have no lights, but also no water?  Yep.  No water.  Not to fear, y'all!  Apparently, this occurs more often than my best friend would like to admit as she owns a back up generator.  When it became apparent that the power wasn't coming immediately back on or just back on in the near future, the excessively loud, roaring generator gave power to the refrigerators, the well pump, and to some of the outlets in the master bedroom.  Most importantly, there was power to the television in the master bedroom and we got to watch The Mocking Jay Part 1.  It was just like old times.



Added bonus, Megan and I went out alone, together, without the kiddos to a movie.  Like a real movie in a movie theater with no lights, stadium seating, and popcorn.  Not a TV.  Not a sensory screening.  Not during the day.  But a newly released in-theaters-only movie in a real movie theater at night after dark.  Now don't laugh, but Megs and I saw Frozen Fever.  Yeah yeah, I know.  Kid cartoon without the kids.  So shoot me.  It was fun! "some day my prince will come. la da da da da".  Oops, wrong princess song.

Facebook Friend Meet!

While in the frozen tundra, Ellie and I had the privilege of meeting up with my other Megan (Megan M.) and her daughter A who made a 5 hour round-trip drive just to see us! Megan M. and I met through Facebook and have chatted on an almost daily basis for a few years and yet, we never met.  It was so lovely to see her in person and spending a day with her and her darling daughter.  As it turns out, we are both talkers.  Every time Megan M. would say"it is time to leave", we would then chat for another 20-30 minutes.  This repeated a few times until it was so late, it would be dark for a huge chunk of her drive home! Isn't it amazing how you can form such a connection with a person that you have never met?  I am forever grateful for our two daughter bringing us together.

Hello Kitty rainboots. Check!
Double socks, shirted, pantsed. Check!
Borrowed winter coat. Check!
Borrowed hat. Check!
Borrowed snow gloves. Double Check!
You can find most of these things in Austin in March, FYI.

Our visit was over all too soon, but we encountered an unexpected surprise. Ellie and I were supposed to return home on a Friday, but the first leg of our flight was canceled due to bad weather in Baltimore.  While we could have been routed through 5 other cites, all flights to Austin were fully booked until late Saturday evening.  Thank you SXSW for bringing much business and traffic to our eclectic city of music. Consequently, the Bear and I got to spend the rest of Friday and a huge chunk of Saturday with Megan and family!  It also meant that Ellie got to play in the snow. . . something that just doesn't happen in Austin.  Being the perfect imitator that she is, Ellie learned how to shovel snow, make a snow angel, and sled as well as get intense sensory input by "tasting" a snow ball. Oh how I miss snow!

Don't worry. . . it wasn't a "yellow snow cone"

Because the flight from Baltimore to Austin was after her usual bedtime, she slept almost the entire way!  That means I got to start reading a good book, Motherhood Unexpected by Deanna J Smith




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