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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The Big Fat ADHD Adderall Post

It has been 8 months since we first started Ellie on Adderall.  If you are new to this blog, please read here and here to get the full background as to how Andrew and I came to this decision.

After trial an error, we finally found the right dosage in February.  As in the first two doses did nothing.  Nada. Zip.  It was like giving her a sugar pill.  So girlfriend is a bit tolerant.  Eh, no surprise.

Anyway, AMAZING things have happened since then.  It is as though a cloud has unblocked the sun and my Bear is thriving.  To think that we were so scared to take that step and now I wonder why we didn't start as soon as she turned 4 years-old?

For starters, this happened!

This would be before she decided to practice her artistic skills on our living room chair.

Because she is able to sit still without eating the writing implements, we have seen great progress in her fine motor skills. She can actually grasp a crayon or marker perfectly.  She is still scribbling, but we are starting to see some purposeful horizontal and vertical lines.  At the end of the school year, if her OT placed her hand on top of Ellie's, she was able to write her name!  Now, coloring is a favorite activity of hers.  No paper or writing utensil is safe from her little hands!

Another major advancement is her communication!  Because Ellie now has the ability to attend for short periods of time, she is able to learn signs and tries to string them together.  She is now able to watch our mouths and try to imitate sounds.  It is all very garbled and her "hi" still sounds like a scream, but she tries to say bus [*ss], juice, cracker, car, ball, baby, bye, dada, mama, cat [ack], mouse, Mickey [icky], and yes.  Oh and the all important "cookie".  The word "open" still sounds like "a-baby" which I still don't understand why, but at least we know what it is.

As the school year drew to a close, Ellie was starting to progress cognitively.  This is because the main goals in school were no longer to stop her incessant, purposeless climbing or to get her to sit for 5 seconds in group.  With the Adderall, she could attend and therefore absorb her surroundings and learn during circle time.

Doesn't everyone keep flashcards in their backpack?

A big concern for many parents is "will this make my kid a zombie?" or "will this change her pseronality?"  For Ellie, the answer is no.  Girlfriend is still very sassy, spunky and quite ornery.  She loves to get into trouble.  She practices her selective hearing when she doesn't want to do something.

That would be our electric bill

We still see this, but it is purposeful and without a possessed look about her.

The main side effect that we have seen is decreased appetite.  She did lose 1.5 lb initially, but was stable up until a month ago.  Her most recent weight loss is related to her GI issues.  Pre-GI, she wouldn't eat until the afternoon when her medication would wear off.  She would eat a large afternoon snack, a large dinner, and a large bedtime snack!

We have tried drug holidays on the weekend and it was disastrous.  For her (and for us).  She would be outside and want to play in the sandbox, but she just couldn't.  She had to run, climb, and spin around.  She would keep returning to the sandbox and then frustrated because her mind would tell her otherwise.  It was devastating to watch.  It was as though she finally knew what she was missing.

The school year will start in just a few days.  With her late September birthday, she will have another year of Pre-K.  I am really excited to see what this year brings!

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!

Ellie's Chewy Necklaces, Chewelry, and What is that around her neck?!

"What is that in her mouth?!"

one and two and three little chewy tubes!
"What do you mean there is something in my mouth?"
(Top Right: how adorable is that picture?--Ellie with Jack-A-Roo holding hands)

Many of you may have noticed in previous posts that Ellie is wearing one or two or seven brightly colored stretchy necklaces and have asked me what they are for and where to get them.  These necklaces are therapeutic chewy necklaces or chewelry which are used to satisfy Ellie's oral sensory cravings.

These necklaces are great for children who:

• chew on their clothing
• chew on their hair
• chew on objects, toys, furniture
• frequently bite, chew, grind teeth, or fidget
• typically seen among toddlers
• kids with autism, ADHD, ADD, Sensory Processing Disorder [SPD]
• and other developmental or neurological disorders
• need to "wake up" their oral motor muscles for eating

I have written a more detailed post on the various chewy tubes for oral aversion, oral seeking, increasing oral motor muscle strength, and speech development.  These posts can be found here and here.

Ellie has extensive oral seeking behaviors.  She must always have something in her mouth.  She typically has toys, books, paper, writing implements, and even the edges of furniture in her mouth.  She is attempting to satisfy some oral need and she is not teething.   These behaviors have affected her play and they have affected her socially.

"Ellie, we don't want to play with you anymore.  You chew on our toys."  "Ellie ate my book!"

Believe me, I understand because these other kiddos are past the eating chalk stage.  They are past gnawing on toys.  Yet, my daughter is still in that stage and is destroying their toys or at the very least leaving a long string of spittle on their dolls or blocks.  Antibodies anyone?

So you mean biting the playground equipment is not socially acceptable?

The chewy necklaces have really helped Ellie.  She can chew on her necklace while listening to a book.  Yes, she can listen to a book now!  She can chew on it while building a block tower.  She can chew on it while coloring.  Now, mind you, she does need reminders occasionally because those crayons or that playground equipment look(s) oh so tasty.  Yet, all you have to say is "Ellie, use your chewy" and she pops that necklace right into her mouth.

Ellie is a thrower and a climber.  We have lost many chewy tubes due to throwing.  Ellie has nearly injured a few innocent bystanders with a flying P-Tube or Tri-Chew.  These necklaces allow her to chew while leaving both hands free for climbing.

Chewy Tubes R Us: Tri-Chew, P-Tube, Chew-Ease, Chewy Necklace

They are also stylish.  Well, in my opinion they are not, but all the little kids are the playground beg my daughter to share her necklaces with them.  "Ellie, can I have one?  Can you share with me?" My daughter, ever the fashionista. The cool toddler on the block.  The trend setter!

We buy our chewy necklaces from National Autism Resources.  You can get the necklace + bracelet in the color blue on Amazon.com but I am paranoid about the bracelet.  I can just picture Ellie strangling herself with the bracelet.  Plus, my spoiled little Bearity Bear likes to tell me what color she wants to wear each day. . . .er colors.

Goodness!  I know that I have at least two more of these!  A purple and a white, perhaps.

Because one chewy just isn't enough and because the Bear must wear the color  or colors that suit her ever changing mood, we bought our in batches (you can do one, 3, or 7).  Because it would be such a shame to own more than one color and *gasp* be missing one of the colors of the rainbow, we specified our color choice in the "comments" section during the online check out.

For an added sensory punch, place these bad boys in the fridge for a few minutes. . . or if you are Ellie Bear, the freezer.  Yes, she does this herself, Little Miss Independent.

Don't mind me. . . just working on those thigh muscles.

That's right, we own all 7 colors.  Pink has been discontinued much to the Bear's dismay.  So. . . if anyone happens to come across a pink one, please alert me!

What about blankie?  I can still chew on my blankie, right?