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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CPAP for Obstructive Sleep Apnea

*I apologize in advance for some missing photos - I used Photobucket for free as a means to store my photos and they are now holding a few hundred pics of mine for hostage unless I pay for an expensive plan and I also managed to lose half my photos from my computer*

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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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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ADHD Update

Last week, I attended a parent-teacher-speech pathologist meeting with Ellie in tow.  For over an hour, my typically hyperactive, unfocused little girl sat in the corner with a group of baby dolls and played.  Relatively quiet.  She sat.  She engaged in pretend play.  She did not try to run out of the room once.   Two weeks ago, this was a distant, unrealistic dream of mine.

This picture says a thousand words.

We had a snow day (I know!  "Snow" in Austin.  Hell hath frozen over.  The world has ended).  I set Ellie up with paint, brushes, paper and a table.  Look closely at this photo and you shall notice the following:

1. Ellie is sitting.

2. There is no paint in or around her mouth

3. The paint cups are in their upright position.  As in not dumped onto the table or floor by an impulsive little girl.

4. She is wearing a princess dress under her paint shirt (okay that is not important but I know Ellie would want me to point out her awesome clothing choices)

5. She is painting.

Let me reiterate.  She is sitting and painting appropriately.  There is nothing in her mouth!  She did not throw anything!  Ellie painted like this for 30 minutes.  THIRTY minutes.  Practicing those fine motor skills and focusing.  

In my last post [Denied Entry], I bemoaned the fact that Ellie's private summer preschool was refusing to let her attend this summer due to their fear of choking.  I explained that she no longer mouths.  I know that this is hard to believe.  I can scarcely believe it myself.  For well over two years, I have written post after post about Ellie's obsessive mouthing.  How she couldn't even use a writing implement because she was fixated on mouthing.  How she couldn't play because she was mouthing.  How other kids didn't want to play with her because she chewed on their toys.

Ellie playing in her sandbox.  She played for 2 [TWO!!!] hours

What happened?  Did I glue her mouth shut?  Did I feed her an exclusive diet of tree bark to make her oral avoidant?  Have I resorted to duct taping and strapping Ellie to a chair?

One word.

Adderall.  

Some of you may be thinking "it is about freakin' time!" while others may think "she is too young" or "there are more natural, better ways".  

After my last post about Ellie and ADHD, Andrew and I had to make some tough decisions.  If you want to read other methods for the management of ADHD, read through this blog or read this post.  I have written about most of them.  If you think she is too young, like I did, peruse the AAP guidelines for the treatment of ADHD in the 4-6 year-old age group and then consult the Lexi Comp Pediatric dosage handbook for methylphenidate and amphetamine salts (actually don't do that, the side effects are scary).  Anyway, short-acting stimulants are approved for children down to age four. My mama bear opinion was that she is too young and stimulants are scary and I am going to do behavior therapy and sensory integration until it kills me. . . except, it wasn't working for our daughter.

To wrap my brain around the concept of placing my baby on a stimulant medication, I asked myself the following questions many times in the past few months:

What if my daughter had diabetes?  What if her pancreas was malfunctioning and not able to produce enough insulin for her body?  Would I refuse to treat her with insulin?  There are risks to any medication you know.  

My daughter has ADHD.  Her brain is not working correctly.  The neurotransmitters of dopamine/norepinephrine are not functioning properly when exposed to stimuli and various neuro-pathways are not functioning properly.   Would I treat her with a medication to help regulate these neurotransmitters and pathways?

Photo: Scientific American

Yes.

I will tell you that it has not been a walk in the park.  Each person responds differently to medications and there is trial and error to find the right one.  

We tried Ritalin.  We saw nothing with the first dose.  When we bumped it up and I helplessly watched my daughter lay on the floor crying and screaming for 4 hours--the exact amount of time it took for the medication to leave her system.  It was horrifying and I was back to questioning my judgement.  

We then switched to a different class of stimulants and tried a tiny dose of Adderall and saw. . . nothing.  We then increased the dose and saw. . . nothing.  

We increased the dose again and saw. . . appetite suppression (a common side effect) and no behavior changes.  We increased one more time and BINGO!  A light switch turned on in Ellie's brain.  

My Ellie could focus.  She could focus for very long periods for activities that she is interested in.  She can focus very well on escaping activities that she does not want to do such as going to ST at school or going down for quiet time. She is a little less impulsive (think a 7 out of 10 instead of 10 out of 10).  She still gets distracted for following directions when it comes to hanging up her back pack, putting on her shoes, or toileting, but she requires a little less redirection.  The most surprising and completely unexpected effect was the cessation of her mouthing.  It just stopped.  I even sent her to therapy without her chewy tube *gasp*.  

The biggest side effect we have seen is her lack of appetite.  She barely eats until the late afternoon/evening.  It appears that she has lost a little weight.  We are trying to increase the caloric content of different foods and we have learned to only offer her small bits at a time, at frequent intervals.  We are also discussing a "drug holiday" on the weekends.

Adderall is not a miracle drug.  There are still several behavior issues that we are working on Ellie with, but we are excited to see her play and paint and color.  

This photo has nothing to do with ADHD.  I just wanted to prove that it did indeed get cold here.  Oh and prove that Ellie owns a coat!

ADHD and Ellie

*This is a continuation of the post I wrote last week about SPD and ADHD being the pits.  I really wanted to title this post "ADHD Sucks!" given my state of mind lately. I promise more uplifting posts in the future*

About 65% of the week, my day ends in tears.  My tears and Ellie's tears.  I want to check out at about 6pm.  When Andrew gets home.  The day has been a long battle where there are no clear winners. Not that there is a competition going on or anything. A battle to survive the day, perhaps?

The other 45% of the time, I feel like I imagined those horrible, trying days.  I see what can and should be.  How wonderful, smart, and kind my daughter is.  What she is capable of.  Her infinite amount of potential.

My little girl is ruled by hyperactivity, lack of impulse control, a nonexistent attention span, and sensory seeking behaviors.  All classic hallmarks of ADHD and sensory processing disorder.  These acronyms were suspected back when Ellie was just 22 months old and later confirmed 1 month shy of her 3rd birthday by more than one health care professional.

To say that she is consumed is an understatement.  What looks like bad parenting to the casual observer are actually carefully enacted behavior therapy tactics and a frazzled mother trying to keep her sh*t together.  When what a really want to do is throw myself on the floor and kick and cry and scream.

It is not her fault.

I thought that I understood ADHD, but I did not.  Not until Ellie came along.  The signs of ADHD were there before she started to walk.  My little spider monkey was actually trying to climb before walking.  I didn't really think ADHD was a big deal. I thought, yeah, kids with lots of energy.  Let them run around outside to wear them out.  They are never worn out.  Then I saw this disorder driving my daughter.  My child is consumed and it is affecting her ability to socialize, learn, and even talk.

I worry about Ellie.   I worry that I cannot help her.

One of Ellie's goals in school is to sit in circle time in her chair for 10 seconds.  TEN seconds.  She is 4 years-old and only 10 seconds.  Without stealing another child's chair.  And it is DIFFICULT for her.  Following directions is a near impossible feat.  She hears only part of the command and is then distracted or she hears the entire command and then gets distracted while trying to follow it.  It can take 15 minutes to put her shoes on because I have to constantly redirect her from the toy laying on the floor, the piece of lint under the table, or all the other shoes on the bench.  There are times where she actually gets one shoe on, but is so distracted that she starts wondering around without putting on the second shoe.  Getting dressed is like completing an obstacle course blindfolded.

She has a hard time using the iPad.  She cannot wait for an app to load or a YouTube video to come on without swiping the screen of the iPad.  Then she is agitated and frustrated because she didn't get to use her app or see the video.  Sadly, the iPad is thrown across the room.  Happily, the Otterbox case is a great product.  Or my personal embarrassing favorite, the walking through a restaurant and Ellie impulsively decides to grab a drink off the table and dump it on the ground.

Don't even get me into the climbing.  The crazed climbing with no focus.  This is not climbing to get to an object, but rather climbing because she her little brain tells her that she has to.  No matter how much she climbs, it is never enough.  Try paying attention in school or playing with a friend when your body is screaming at you to climb.

One of the first things we tried, without success, was a gluten-free, dairy-free diet.  We have tried various sensory exercises.  Some of which partially help like brushing, swinging (one of those swings that completely encloses you--in therapy only as those bad boys cost $200), and deep compressions. Heavy work occasionally helps.  Others that did nothing included SPIO vest, weighted vests/blankets, sitting on a bumpy disk.  We use a lot of positive reinforcement and pictures for sitting for small periods and a lot of first:then--first sit on potty, then you get juice.  Or first x therapy, then you get baby doll.  Time outs do nothing.  Other things we tried can be found here at sensory ideas for the home.  For those of you who live near Austin, I can give you details about every park and indoor play scape in a 15 mile radius because I would take her to these play-scapes before therapies to help her focus.  Ellie is the energizer bunny.  She keeps going and going and going.  (This mama bear could use some D-cell batteries for herself because coffee just isn't cutting it!)

I kept hoping this was temporary.  Like the terrible 2s or 3s or even 4s.  That as she matured developmentally, it would just disappear.

It is not a phase.

When Ellie first showed signs of SPD and ADHD, she was evaluated by a developmental pediatrician.  Her regular pediatrician referred us because "I have never seen a child with so much energy".  Our developmental pedi (who was floored by Ellie's endless energy and her ability to move and exam room table) recommended various sensory exercises and ABA therapy (behavioral therapy).  In many cases, preschool-aged children no longer fall under the diagnosis of ADHD after 6 months of ABA therapy.  We sincerely hoped that would be the case for Ellie.

ABA therapy drastically helped with her throwing triads and some of her other troublesome behaviors.  She learned how to sit in a chair, follow routine directions, and I learned a lot of great parenting skills in handling her sensory issues.  We still have ABA therapy once a week and whenever something comes up, I ask her awesome therapist Leslie for advice.  Everyone needs a Miss Leslie to consult!  Early Intervention also helped us in finding chewy tubes and various foods that would help satisfy her oral cravings.

We did it all.  A year later, things were getting better in some areas (sensory) and worse in others (impulsivity and attention and CLIMBING).  At this point, Ellie was almost 3 years-old and was evaluated by the school system. They were afraid to put her in the typical special eduction placement.  I would call the developmental pedi office crying because I felt that I couldn't keep Ellie safe!  I couldn't leave her alone. When I used the bathroom, I would take her in with me, but she would be in the sink flooding our bathroom or hanging from the shower curtain!  I was scared to go grocery shopping because she could climb out of the cart.  I was just plain scared.

After much discussion, Ellie got some respite from her drive to climb in the form of Tenex (guanfacine).  This alpha-agonist is a blood pressure medication that works in the brain.  It is one of two nonstimulant medications approved for the treatment of ADHD (the other being clonidine).  The caveat, there is limited efficacy and it does not work on impulsivity.  Within in one week of trying the Tenex, we saw a huge difference.  Bear didn't seem to be driven by a motor.  She wouldn't get that glazed look in her eyes and climb just because her brain commanded her to.  If she climbed, it was purposeful--to climb a playscape or climb the kitchen island to reach a forbidden item.  She was able to attend a little longer to tasks.  Things were not perfect, but they were better.  She also slept better.  The second assessment for school couldn't believe she was the same child.  The therapists felt that they could make headway on helping her to communicate or develop fine motor skills instead of just running after her.  I was able to read most of a board book for the first time to her.  My little Ellie was still a sassy little girl full of personality, but her motor seeking behaviors had vanished.

Every few months the school, therapists, Andrew and I would notice spikes in her hyperactivity and poor attention and we would increase the dose.  A few months ago, we maxed out on Tenex/guanfacine.  The therapists are having trouble with her lack of attention.  School writes in her daily notes that Ellie is unfocused and not responding to redirection.  Her bedroom curtain rod broke in half due to her attempting a Tarzan move. We rarely go to Quizno's  (recall we went twice a week) because I cannot keep her out of the kitchen or the bathrooms let alone seated long enough to eat.  She has trouble finishing meals because she is so distracted.  The speech therapists believe that her lack words is related to her poor attention span.  That she cannot listen to the whole word or attend to watching the therapist's mouth.  Ellie is becoming more irritable and aggressive.  Her brain is holding her hostage and I cannot help her.

Right now I am doing the best that I can to help my little girl. . . but what if my best isn't good enough?  I love this little girl so much and I just want life to be easier for her.  Why must it be some complicated?

*I wrote this post a few weeks ago.  We have since done a trial of two other medications which have resulted in undesirable side effects.  At this point we are are continuing with the Tenex, but trying to administer it at different times.  It is helping somewhat in the afternoons.  Morning are still difficult, especially before the medication kicks in.

References:
American Academy of Pediatrics ADHD Clinical Practice Guidelines.  Note that there are specific sections for preschool-aged children

CDC-ADHD Recommendations.

Frustrated with SPD and ADHD

I have said it before and I will say it again, sometimes I think that sensory processing disorder and ADHD are the pits.  Ellie is so driven by her sensory and motor cravings that they are affecting her learning.  Her everyday life.  She is capable of so much and yet, she is impaired by her impulsivity, her lack of attention, and her mouthing behaviors.

I am frustrated.  I am angry.  SPD and ADHD are negatively affecting my daughter.  We live with this day to day and most of the time I accept it as just is.  This is the way life is.  Then, something small (or large) happens and I have a mini-mental breakdown.

notice most the tops are missing from the crayons.
Guess who did that?

Last night I was attempting to cook dinner (I know this cooking concept is shocking).  I am not a great cook and I rely on the crockpot a lot. As in 2-3 times a week.  I just toss everything in, turn it on, and pray that it all turns out.  I often forget about side dishes and I was quite proud of myself for buying fresh green beans and crushing a bit of garlic.  I shall be a good wife yet!

Which brings me to the following:

The TV has become my babysitter.  

I loathe it.  I want her to sit quietly and play, but the kitchen island and table are too tempting for Ellie to climb and so Sofia the First on the TV it is.  As I attempted to saute the green beans and shred the crockpot roast with a fork, Ellie pushes me aside and signs "color".  Now, most of you would think this is a great thing.  Coloring!  A great time occupier!  Developing fine motor skills! A budding artist!

I would give anything to settle my Ellie Bear down with brightly colored crayons and harvest creativity.  Yet, I cannot.  She eats crayons.  I kid you not.  At 4 years-old she still eats crayons.  Not mouths them, but eats them.  A stick of crayon. She actually craves crayons.  They are crunchy and waxy at the same time.  They satisfy some rather intense oral craving that she has.  I cannot leave her alone for even mere seconds with a single crayon because she cannot battle the compulsion.  A five minute crayon session can result in the consumption of 4 whole crayons.  Trust me, I know this.  I must sit directly across from Ellie during a coloring session. (It isn't just crayons.  She bites the tips off of colored pencils, eats chalk, and licks paint brushes and don't even get me started with markers as she not only bites the tips but also gnaws right through the plastic, but crayons are her preferred medium).

I could not even let her color.

chewed up white crayon

So I cried.  Sobbed is more like it.  I felt like an epic mother failure.  What kind of mother forces her child to watch TV when she just wants to color?!  Why can't my kid be like other kids and be able to color?  Sensory issues are robbing my daughter of her creativity.  They are preventing her from learning to color.  Learning to draw even the simple horizontal and vertical lines.  How can she ever learn to write her name or draw a stick person if we cannot get writing implements out of her mouth!? Why must things be so difficult for her?  Will this ever go away?  and will I ever be able to get dinner on the table?

Random Ellie pic:
The family that DIYs together is the family that stays together.

*As I look back over this post, I realize it is more about SPD than ADHD.  I will write more about how ADHD affects Ellie in a later post because believe me, ADHD Bear's biggest battle--affecting day-today living, learning, social relationships, and even speech development.*

Adventures in Potty Training

*Warning: as the title glaringly points out, this post is about potty, urine, and voiding, but surprisingly not about poop or other fecal matters.   

I will cure you of your suspense immediately.  The Bear is not potty-trained. . . yet.

Our big potty-training journey started in March.  For months prior to Ellie’s spring break, she was signing “potty” and screaming “Eeeee!".  Andrew gets up to refill his ice-tea, he is going potty.  A patron at the restaurant rises from her table, she must be going potty.  A friend leaves the room during a play date, clearly he is going potty.  Any person who stops what they are doing and leaves the immediate premises is “Eeeeeeeee!”

Ellie Bear has accomplished step 1 of potty training.  She knows the word and sign for “potty”.  

www.babysignlanguage.com

Step 2: she can pull up and somewhat down her pants.  This started around the beginning of the school year when I thought using pull-ups would help her mastered this fine-motor, self-help task.  It did.  Bear has a big bo-dunk-a-dunk (aka booty) which makes it rather difficult for her to pull down her pants without assistance.  This has led to rather entertaining incidents of her trying to sit on the potty while fulled clothed and falling in.  Surprisingly, falling into the big potty does not scare-the-crud out of her.  In fact, she believes that she has successfully gone potty. 

Step 3: She can hold her urine.  School had been reporting that she rarely needed to be changed.  She would come home dry.  She could, in fact, hold that urine in for 3-4 hour intervals.

Step 4: I was forced to buy princess underwear.  Let me repeat that.  Princess underwear.  As in pink.  Lots of pink.  Girly panties.  Ellie Bear wanted to be a “big girl” and be like all of her friends.  

This is the correct way to wear the Little Mermaid underwear.
Yes, that is a princess chair in the background.  Awa Grandma bought it for her.

Step 5: Ellie wanted to use the potty.  Bear witnessed many of her friends using the potty as well as me (yeah, I get no privacy ever).  It is true, Ellie is a potty voyeur. 

This brings me back to March.  Spring Break.  The Big Potty Smack Down.

I thought the Bear would be ready only it was more like this mama was ready.  Spring break and we would not leave the house.  Intensive potty training.  I was stocked up on the M&Ms and the iPad was charged.  The peeing baby doll was ready and I had a sticker chart. This child would be day-trained.  She would head back to school in her little princess panties like the stylish diva that she is.

Ellie was 3.5 years-old at the time.  For those of you new to The Chronicles, Ellie rocks an extra 21st chromosome in her uniquely awesome DNA.  Or in simpler terms, she has Down syndrome.  As such, it is very common for many children with Ds to achieve potty training at an older age. Low muscle tone (hypotonia) runs throughout the body.  This includes the muscles of the bladder and those that make of the urinary sphincter--the part of the body that allows the release of urine.  You see where this is going, right?  Additionally, my little Diva Bear also has Sensory Processing Disorder with hyposensitization to touch.  She requires more pressure to feel things that other people feel.  

Ellie disappear for a bit and returned back with a plastic IKEA bowl.  A frog IKEA bowl.  The baby in this pic is going "potty" in her own little frog toilet aka the IKEA frog bowl.  I promise you, I did not stage this.

At this point, I can tell you all are laughing at me.  Go ahead because I am laughing too.  

Ellie nailed the potty routine in no time:

• sign potty and head to toilet (little frog potty or adaptable seat for toilet)
• pants down
• sit on potty while watching iPad as an incentive to sit (the M&Ms caused weight gain--for me)
• wipe, flush
• completely forget about pulling pants up and trip
• pull stool to sink with pants still around ankles and wash hands
• clap--it should be noted that this is the most important part of the routine

Sadly, she never actually urinated. The few times I caught her going, I would place her on the potty mid-stream.  Those were her only successes.

I tried a few iPad apps to help her out.  I highly recommend the AvaKid-See Me Potty app.

In this app, you have an avatar designed to look like your kiddo and it walks them through the potty process.
Ellie insisted on watching it over and over and over and over and over again.

Ellie really liked getting the phone call from Rachel.  The only problem was, she only got the "oh you had an accident" call and never the "you went potty, great!" call.

By afternoon on the 1st day, I realized that she needed to wear underwear to feel “wet”.  She didn’t get it at first.  She had an accident and signed “water” all while grabbing washcloths to clean it up.  (yes, be jealous.  Ellie is an excellent cleaner).  Two accidents later, she finally figured out that the "water" was coming from her and that she was wet.  The shocked look on her face was hilarious.  Oh Bear!

The rest of the week we ventured out a few times in the morning with big girl underwear and she did great. . . mainly because she didn't pee until naptime.  The afternoons consisted of accidents.  She would sit on the potty, but not for very long.  She would pee about 10 minutes later.  I am not sure if she felt the urge to go or what, but I wonder if she couldn't figure out how to let loose while sitting on the toilet---any tips for that veteran potty-trainers????

Ellie seems to think baby needs to go potty all the time.
Bath baby is fully potty-trained.

Fast-forward to mid-April.  To the date of her tonsillectomy surgery, to be exactly.  After surgery, Ellie drank like a champ, but her IV fluids were never shut off as per doctor’s orders.  The anesthesia and pain medications caused bladder dysfunction, which is a rare but real side effect.  Sadly, The Bear’s bladder continued to become over distended due to too much fluid and her little muscles couldn’t coordinate to let the urine out.  This caused extreme pain.  For nearly 8 hours post-op, Ellie would urinated twice and hour, preceded by 10-15 minutes of panicked fear and excruciating pain.  I imagine many of you could hear her screams.   

The potty training ceased.

Until this past week when Ellie began to show interest again.  Pulling on big-girl panties over her pull-ups.  Signing "potty" to actually use the potty.  Has she peed in the potty yet?  No, but she will!  

Little Ellie Bear seems to think that sitting on the potty = going potty.  She sits and then looks under herself for a stream of urine (see progress since March!).  She then waves her hand under there to feel for urine.  If it is the little frog potty and not a big toilet, she will then touch the reservoir to feel for potty.  There has never been any potty.  Poor Bear.

Socially, Ellie is ready.  Physically, I think her body has a little ways to go.

The thing is, I really don’t care about potty training.  She will eventually get it.  What I do care about is Ellie getting teased at school because she still wears pull-ups or because she has an accident.  We will work on it as she wants to and not push it.  Until then, Huggies shall continue to receive a huge chunk of our take home pay.

I know that this pic has nothing to do with this post :) I just wanted to share a non-grainy, non-iPhone pic of the Diva.