The IEP Meeting and Ellie Antics

Yes, I know that it has been months.  So much has happened in the Theurer household and I won’t be able cover it all unless I feel like writing a novella. 

The IEP Meeting:

Back in January, we had Ellie’s IEP meeting. Yep, I said January.  I told you that it has been a while since I last posted.  It went well.  There were no surprises as I meet with the teacher and speech therapist beforehand to help develop goals.  We are really going to push Ellie this year with her reading, communication, and mathematics.  We have high expectations for her and we have no doubt she will meet or come close to meeting her new goals within the next year. 

In fact, her end of March report card showed that she already mastered 3 of her 4 math goals and  that she is halfway through some of her other goals - that’s all within 2 months!  As for fine motor skills, we added back in 1:1 OT.  We also removed her handwriting goal because she is not progressing.  Instead, we are going to teach her how to type on the computer and on her speech device.  The teacher and I are still going to work on writing her first and last name so that she can write her name on school work and sign documents.  

A miracle occurred, the speech therapist added on MORE 1:1 speech therapy minutes.  I know that y’all are shocked because us parents usually have to fight for this.  Yet, I didn’t even ask for more minutes - talk about a pleasant surprise!

Such a good girl at the dentist!

A Thief in the Night

Ellie seems to be doing well with her fine motor skills.  She is actually aspiring to be a cat burglar.  Her ABA center has a keypad to the door that leads from the waiting room to the therapy rooms.  The little turkey watched the therapist enter the code and on her 3rd session, the stinker butt unlocked the door.  That’s right, Turkey Bear figured out the code.  Needless to say, the door now has a new code.

Throw Back!

Little Miss Talks-A-Lot

Ellie has had a communication explosion.  Kyla has been Ellie’s respite care provider for 20 months now.  Last month, instead of calling her “uh”, she is now “Kai - Uh”!  She is also trying to say more words and some of them are becoming more understandable.  I do believe that her speech device has played a big role in expanding her vocalizations.  

She also has the propensity to talk in her sleep when I go to put on her oxygen nasal cannula. 

What she says in her sleep: Dada, Pig [her favorite restaurant], zone bar, horse.  Not once has she said “mama”.  I fall below food items.

Somebody loves the donkeys, Honky and Tonky

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Speech Breakthrough, an unexpected IEP, Funky Breathing, and Mama Gut

The exciting and most wonderful new!

I’ve been waiting 8 years to hear my daughter say those 3 little words.  Words I was never sure that I’d hear.  Using her CHAT device, Ellie Bear said “I love Mama”.  There, may have been a few tears.  Okay, a lot of tears, happy tears were shed.

Speech therapist on Ellie quarterly report: we need to meet ASAP for her IEP revision!

A few weeks ago, we received Ellie's quarterly report card.  For those of you who do not have kiddos with special needs, the "grades" are based off of Individualized Education Plan (IEP)'s goals.  You have things like met, continued progress, regression, and N/A.

I was scrolling along beaming with pride because most of her goals were close to being met already.  Then I get to the speech section - no "grades" typed in at all.  Instead, a note to meet with her ASAP.  My heart plummeted as well as the thought  of "if we need to meet ASAP, why didn't she call?".

Panicked, I approached the meeting room with the teacher and SLP with a wicked fast heart rate and mild tremors.  I apparently freaked out for nothing.  We have a new SLP this year and her goals were written by the old SLP at the end of last year.  The new SLP, Mrs. A ,said that these goals are not really appropriate - not that she couldn't maybe meet them, but not the types of things they want to her to accomplish in the Functional Communication Classroom. 

Ellie's teacher wants her annual ARD (the big IEP meeting with all teachers, therapists, vice principal, etc) because her goals are also inappropriate and pretty much met.  She based Ellie's goals off of what her FAC teacher said she could do last year.  For instance, he couldn't tell her exactly how many sight words Ellie knew and said "just a few" or something along those lines.  The FCC teacher, Ms. L, thought a good goal would be 27 sight words.  Well, when she started working with Ellie, she discovered that Ellie already knew over 500 words!  She calculated the new words she has learned since the beginning of the school year and it is already over the 27.  With the introduction of the speech device this year, the teacher is finally able to assess what Ellie truly knows and that may have been why FAC couldn't measure her true progress.  Hence why we need new goals. 

Showing Mama Bear around her classroom

 What is up with these oxygen saturations? and always trust Mama Gut

Two weeks.  That’s how long the Bear has been ill.  I was at Ellie’s school for the Thanksgiving lunch and she was coughing.  Nothing that I normally wouldn’t think too much of, but mama gut told me to take her to the nurse to get a pulse ox reading (this checks the amount of oxygen in the blood.  Normal is 97-100%).  She was hanging out at 92%.  Her inhaler helped her a bit, but she kept returning to the low 90s.  I took her to CCC the next day.  Totally anticlimactic.  I was told she might have mucus plugs in her lungs and is coughing them up. Therefore, coughing is good.  I wasn’t to give her the inhaler unless she was either 1. under 88% oxygen saturations or 2. wheezing.  She started getting better, but then spiked a few fevers off and on during Thanksgiving week.  The day before Thanksgiving, she was a snot machine, which she didn’t have before, but not worrisome.

Then, yesterday morning, her cough was bad and I checked her saturations - 88%.  So we used the inhaler.  I had her checked out at school and same thing.  The inhaler helped a bit.  I was finally called to come pick her up because she was trying to nap on the classroom floor (of course she gets home and is miss energy).  She looked horrible.  Today I took her to CCC and I noticed her lips were turning blue.  She was at 86%, but came up to 91% with the inhaler.  Her lungs had crackles (a sign of fluid in the lungs like with pneumonia).  We are to give her inhaler every 4 hours and start her on Omnicef.  If no significant improvement after 48 hours, she’ll be started on a course of steroids.  If she either 1. can’t keep her sats above 88% with the inhaler or 2. has a >101.5 fever Friday or thereafter, she needs to be seen again.  I think she’ll be fine. 

She's pretty excited because she put her PJs on all by herself
Another milestone today!!!

Is it respiratory or reflux?

Reflex vs. Respiratory - Miss Pukes-A-Lot

Ellie has a history of esophageogastroduodenitis.  That is a fancy way of saying reflux and inflammation of the stomach and upper small intestine.  See, not that exciting, but it does mean the Bear gets to take reflux meds.  Last month, Chicka Boom was puking up her bedtime meds 2-3 x a week.  Usually about 1 hour after dinner and twice it wasn't related to her meds.  Once occurred, on the table at Chuy's.  Its cough, cough, cough, cough, puke.  After 3 nights in a row of not getting her meds, I called CCC.  Of course they don't get back with me. I call GI who calls the CCC for me.  Immediate call back.  My thought is that she needs a reflux med adjustment because back in June, we did a trial of the medication and she randomly vomited and it resolved after restarting the meds.  The docs agreed with me and had the bright idea to put her on cyproheptadine aka Periactin.

Periactin is an interesting medication.  It is a prescription allergy medication (antihistamine similar to Zyrtec)m, but is also used as an appetite stimulant, migraine prevention, and treatment of delayed gastric emptying.  Ellie was on this a few years ago as an appetite stimulant.  Uh huh.  The kid has packed on the weight these past few months.  She doesn't really need to gain anymore.  Anyway, fun fact about antihistamines: they help with nausea.  Histamine is what signals the release of gastric acid in the stomach to break down food.  If you block the release of histamine, there is less gastric acid to reflux back into your esophagus.  It seems to be helping.

I think that is all for now!  I am looking forward to hearing more of those "I love Mamas" and a future visit from my parents and my brother, Matt.

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Just Chilling

If you have been reading this blog for any length of time, you know that when there is a big gap between posts, it is because nothing major is going on.  I am happy to say that things have finally calmed down.  Oh we still have doctor's appointments and therapies, but things are good.

Since Ellie has switched from the FCC classroom from the FAC room, she has been doing well. In fact, the teacher has not seen any challenging behaviors.  We all keep saying "just wait".  I don't know why she has stopped shirt pulling and pushing as she is still doing these things in therapy waiting rooms.  Maybe because she gets more attention as there is another aide in the FCC room?

She is doing so well that she received an Eagle Pride Award at school.  She was pretty excited - mainly because she got a piece of paper.  Andrew and I are very proud of her.  At times, it seems that the whole focus is on her negative behaviors and regression.  It is good to see her rewarded for her good behaviors and accomplishments.

Ellie had a dance recital this weekend.  This is with the 2dance2dream charity.  Studios around Austin offer up studio space for a free dance class for children with disabilities.  The older students are act as volunteers to provide more one-on-one support.  I would love to tell you that Ellie danced.  She did not.  She stood there and allowed the volunteer to stand behind her and move her arms around. Oh she did do a bit of jumping.  She also sat on the stage for half of the dance and attempted to crowd surf twice. This is usually how it goes.  She has two recitals - the studio recital (in this case Evolution Dance) and then the 2dance2dream recital.  For one she will do most the dance and the other she will attempt to run away and throw herself on the ground.

I think in my last post I mentioned that Ellie had high blood pressure.  Last month, we went to nephrology.  Of course her blood pressure was completely normal.  The first normal reading I had seen in a year.  Our 1 month follow up was this week and again it was normal.  Figures.  So Ellie doesn't really have high blood pressure and we can finally cross one specialist off our list of people to see.

Glasses.  Oh the glasses.  It isn't going too well.  I can get her to wear them in 5 minutes increments.  As in she wears them for 5 minutes and then I have to tell her to put them back on.  This will go on for a 1/2 hour and then nothing I say or do will get her to put them back on.  They have the little strap in the back and she can still get them off.  I am not sure what to do.  Just keep putting them on her and hope she gets used to them?




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IEP Meeting, Behavior, Vision

When I last left off, I talked about Ellie's regression and the need to move her into a different classroom setting.  I know that it needs to be down.  That it is best for Ellie at this time, but I am just not happy about it if that makes sense.

Last week we had Ellie's IEP meeting, which was completely anticlimactic seeing as I met with Ellie's Functional Academic Class [FAC] teacher twice and her new Functional Communication Class [FCC] teacher.  It was more of a formality - sign the paperwork.  I am really glad that I met with the FCC teacher in advance.  I felt so much better afterwards.  We discussed goals and she showed me in detail how she will teach Ellie and help her to accomplish her goals.  I think that this move will be good for her.

I was, however, not happy the decrease in inclusion time.  In FAC, she would spend 30 minutes with the 1st grade and then specials (art, music, and PE).  In FCC, she loses most of that. She does get reverse inclusions where they bring a typical kid in from the 1st grade to be with her for about 30 minutes. I don't really think that counts, in my opinion. The reason they are taking away inclusion time is because "with her behaviors, she requires too much redirection and is not getting much out of it".  My concern is, how can she learn appropriate social behaviors if she cannot be around and model herself after typical kids?  We did negotiate and decided that she can float into FAC for announcements, lunch, and recess.  With recess, she will remain with the 1st and 2nd grade class, which is good because there are 4 girls that love to play with Ellie.

Rather than wait until the next school to move Ellie to her new classroom, we decided to transfer immediately to the FCC room.  So on Monday she started FCC and I am told that she is doing well.  Minimal behavioral issues.  I think that I just jinxed her!

Two weeks ago we started weekly Applied Behavior Analysis [ABA] therapy in hopes of building up Ellie's social skills and working on her problem behaviors.  She has some 1:1 time with the behavioral therapist and some time to be with other kids.  I have been informed that she does really well at following directions.  Humph!  I wish she did that at home!

At the recommendation of the ABA therapist, we took Ellie for an autism evaluation yesterday at neurology.  We learned that Ellie has bad ADHD.  No kidding!  The doctor said that while she has some autistic-like behaviors, which is common in kids with Down syndrome and developmental delays, she does not have autism.

I recently ordered the book Supporting Positive Behaviors in Children and Teens with Down Syndrome.  I am hoping that maybe I can learns some tips to deal with Ellie's behavior and maybe gain some understanding.  I shall report back after I read the book.

We went for our annual ophthalmology appointment on Monday and learned that Ellie has great difficulty seeing out of her right eye.  It crosses a lot.  So we have the great pleasure of trying to convince Ellie to wear glasses.  I am wondering how much her poor vision has affected her school work?  Is she acting out more, trying to escape work, because she cannot see the learning materials?



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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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Finger Play: Ellie and The Wheels on the Bus

Imitation.  Finger Play.  Songs like Itsy Bitsy Spider and Wheels on the Bus serve more than just a means to entertain a young child.  They help increase attention span.  They help hone in on those fine motor skills.  They help with speech and communication.  They help with socialization.

This is a video of Ellie rocking out to Pete The Cat's version of Wheels on the Bus.  To some, this video may not look all that exciting, however, to me, it is amazing.  My daughter, the rockstar.  Her awesomeness captured briefly on my iPhone.

For starters, Ellie is sitting, sort of.  Let me repeat that.  My hyperactive, spider monkey is s-i-t-t-i-n-g!

Typically, I sit (okay, attempt to sit) with Ellie and go through the hand motions with her--round and round, up and down, wah-wah-wah, shhh-shhh-shh, honking the horn, swish swish swish.

In the beginning, I helped her make these movements by hand-over-hand.  Eventually, I would remove my hands and encourage her to imitate my hand movements on her own.  Yet, in this video, my little girl is going through the motions UNPROMPTED.  Yes, she is doing this of her own accord.  This is HUGE!!!!  Her "up and down" has been Ellie-fied so that she is using her body instead of her hands.  During her "up and down", you also notice the she "checks in with me".  This is a big developmental milestone.  You can see where she thought the next movement was the horn rather than the driver's move on back.  You can see where she is rather late in mimicking the mommies on the bus going shhh-shhh-shh, but she does it!  Finally, you can hear her vocalizing.  Yes, making sounds with her mouth.  My non-verbal darling belting out "WAH!" and whispering "ssshhhhh" and at the end cheering with all she's got.

In case the video does not work, here is the youtube link.



Other YouTube videos that Ellie enjoys:

Pete The Cat's- I Love My White Shoes
Brown Bear, Brown Bear What do you see?-song
Phonic Learning Song 3

It is how her brain is wired

I wrote this post a few months ago and then stumbled across it in my drafts folder.  The photos, however, are recent.  



"We think that this goes beyond Ellie having Down syndrome".  Those are the words one of the ECI therapists uttered with regards to Ellie's poor speech development back in June or July or sometime before she turned 3 years-old.

No, I think.  No, it is because you guys didn't want to provide her with speech therapy services.  It is because you didn't send a speech therapist out here until recently and then only monthly at that.  It is because she didn't have the right therapy.  Because she never had a chance.  I argued and argued and argued for her to have speech and now you are leaving her!

And yet, I knew that they were right.  Ellie wasn't talking.  She was barely making noises.  She didn't babble.  Didn't jabber.  Only a handful of words emerged from my daughter's beautiful mouth.

I wanted her to be deaf.

Because it would explain why she couldn't speak.  Because then we could try hearing aids.

I wanted her to have poor vision.

Because then she could have glasses and it would explain her poor signing.

Give her peanut butter.  It will stick to the roof of her mouth and her tongue will go up so that she can form works with /n/ and /t/.

She couldn't feel that sticky peanut butter on her high arched palate.

Place ice cream on the upper lip.  The coldness will cause her to lick it off.

She couldn't feel it.

No matter what we tried, her little tongue wouldn't point up.  It would just go all Gene Simmons-way out and down.

I watched her.  I saw her try to mimic my mouth.  She would look so intent on imitating and yet, she couldn't physical follow what I was doing.

"Well, it must be how her brain is wired.  This is beyond Down syndrome.  She must have poor oral motor planning."  The brain signals are not reaching her oral motor muscles properly.  They are jumbled.  She should be making /m/, /p/, /b/, /w/, /d/ early phoneme sounds, but she is not.  She should be this.  She should be that.  She is instead focusing on guttural /g/ and /k/ sounds. She does not show signs of true apraxia.  Should be. Should be. Should be.  I am so sick and tired of the should be's.

signing "car"

Her signing is the same way. Why is it car, puzzle, climb, celebrate, and ambulance all look the same?  Blanket, paint, sweep, friend, train?  Baby, love, and bear?  Shoe, more, ball, help?  Her signs are such gross motor approximations that even I cannot interpret them without a vowel or consonant sound accompanying them.  I get frustrated.  She gets frustrated.  I just want to understand.

I guess she wanted her water!

Okay, so I didn't really want her to be hearing impaired.  I didn't want her to be vision impaired.  I certainly, don't want there to be a sensory input-output neurological connection.  I just want communicating to be easier for her.  And, yes, selfishly, for me.  I want to hear her voice and understand her.  I want her to be able to communicate her needs. . . by talking.  Or at least by signing.  Poor oral motor planning.  Poor fine motor planning.  We will get through this.  Together.  On Ellie's time.




**Ellie is no longer in ECI.  She still struggles with formulating sounds, words, and signs.  She is motivated to communicate though.  There are still meltdowns when I cannot figure out what she wants, but she is trying to sign new signs and say new words.  We are currently using both Kaufman therapy and something similar to PROMPT. Of course, we continue to use our Signing Time videos and Picture Exchange Communication.  Ellie is a rockstar and continues to amaze me everyday.**

Preparing to Enter Preschool Special Education: The IEP Meeting and Ellie's first day

This is the bus Ellie rode to school today!

Over the past few weeks I have chronicled our experiences leading up to the big IEP meeting.  Those previous posts can be read here and here.  I have since learned through both Facebook and blogging comments that every parent looking into the special education system should receive the results of their child's assessment by the school district in writing.  However, many of you have reported receiving no results until the actual IEP meeting or you have received a phone call prior to the IEP meeting.  I suppose a phone call is better than silence, but there is something to be said about seeing it in black and white.  Please know that it is your right as the parent to receive your child's assessment results prior to sitting down at the IEP meeting.  This allows you to 1. digest the labels and percentages that are assigned to your child's development and 2. prepare some goals that you would like to see addressed throughout your child's school year.  Andrew and I were very happy with our school district in that they consistently emailed us updated information about the assessment as well as their recommended goals that they would liked to be considered by the IEP committee.

Disclaimer: remember that this is our first experience with the school district and we are truly novices when it comes to navigating the special education school system.  We are still learning the system. Every state is different in its rules and regulations. Advice and sharing your experiences are always appreciated in the comments section!

I really don't know about this school nonsense.

Last Wednesday, Andrew and I attended the IEP meeting at the local elementary school.  Present during this meeting was our ECI therapist (J), the school's speech therapist, the school's special education teacher, as well as the diagnostician/pediatric psychologist that evaluated Ellie.  It should be noted that two of the people present never met Ellie.  These two people are blindly creating a school year plan for a child that they never met.  They are solely dependent upon the documented observations and recommended goals by those who carefully assessed Ellie a few weeks ago.  They also reviewed our private therapy notes (Applied Behavior Analysis Therapy [ABA] and speech therapy [ST]) as well as a detailed visit note from Ellie's developmental pediatrician (Dr. F).  This was a rather scary concept for me--People deciding the educational fate of my little soon-to-be 3 year-old by looking at pieces of paper.  More on that later!

Here are a few tips that I received from, quite honestly, the internet and from fellow colleagues who have traveled this windy path before us:

1. Dress up.  This means no shorts or hoochie-mama tops.  I wanted to be perceived as a serious member of the IEP team and as such wore nice pants, a nice shirt, and make-up.  Andrew wore a polo shirt rather than his BBQ/Mexican food T-shirt "uniform".  That is what us parents are--members of a team.

It can feel this way on both ends.

2. Treat the members of the team with respect.  They work very hard.  They are highly trained professionals and they truly do want what is best for your child.  They are not out to get you.  I know many people in the special education field.  Ellie's babysitter is currently in school for Spec Ed and her passion is contagious.  They chose this career path because they truly believe our children can do wonderful things and because they want them to succeed.  I do know that people burn out and become jaded by the system, but I honestly believe all involved want our children to succeed.  We may not agree with their approach or their recommendations and that is okay, but we still owe respect.  It isn't always the parents who are afraid of the IEP meetings.  No one wants a battle.


3. That being said, YOU know your child best.  How she best learns and what her true strengths and weaknesses are.  They only captured a snapshot of your child through the assessment or through a piece of paper.  If you do not agree with something or you feel like they did not get a clear understanding of your child, be sure explain, educate, and give examples.


4. Bring photographs of your child.  It is helpful to everyone to place a face with a name.  I brought in pictures of Ellie doing things that she loves--working on her shape sorter, feeding herself with a spoon (very messy!), and playing with her baby doll.  Plus, I brought in a picture of Ellie looking all sweet and innocent.  Remember, she hyperactive, sassy, and sensory driven.  It all looks scary on paper--"this child is TROUBLE!" so the innocent pic helped in my humble opinion.  (Remember, I mentioned that two of the people present in our IEP meeting never laid eyes on my little angel.)

I brought this photograph with me because Ellie looks lovely and sweet.

I contemplated on bringing this photo collage because it demonstrates Ellie's amazing spoon feeding skills.  However, it also screams "I like to torment my caregivers with my naughty antics".

5. Bring in all reports concerning your child--the reports from the school district's assessments, summaries from individual therapists, and doctor's notes (i.e. Dr. F from developmental peds).  Even though you supply these notes for the assessment, it cannot be assumed that the people actually read them.  We were fortunate because there were direct quotations from Dr. F in Ellie's school district assessment.  That being said, the speech therapist had no idea that Ellie's speech therapist was using the Kaufman Method.  When I brought it up, she made the note to continue using this method with Ellie during her speech sessions at school.

6. Bring tons of paper for taking notes and extra pens.  Wouldn't you know that during a very important meeting your pen decides to boycott writing.

7. For Ellie's teacher, I supplied a list of Ellie's signs as well as an "All About Me" sheet.
The above ended up being very important.  You see, Ellie knows over 70 signs.  Okay, they are VERY  gross approximations and for many of the signs, only Andrew and I would understand them.  However, during the assessment, Ellie only signed 3 words.  This led the assessment team to score Ellie lower on the communication scale.  Since they now know that Ellie does communication primarily with signs, they are going to work on pairing two signs together as well as words/sounds with signs.

Oh my.  I hope Ms. K is ready for this.

8. COOKIES!  I firmly believe that IEPs are stressful for everyone involved.  Not just the parents.  Our IEP meeting took place in the afternoon.  This was after the teacher and speech therapist had a full morning of teaching 3-5 year-olds and therapy.  Everyone could use some yummy, deletable treats, aka a sugar-fix.

9. This is perhaps what I had the hardest time wrapping my brain around.  Ellie is developmentally behind in fine motor, communication, social skills, cognitive skills, and self help.  Even with all of her climbing and monkey business, she is behind in gross motor skills in that she cannot jump or alternate feet on the stairs, etc.  This led me to believe that she would qualify for ST, OT, and PT.  However, the school focuses on academia.  This means that the goals are based on areas that she cannot function well in for school, rather than development.  Can she walk?  Yes.  Therefore she does not need PT.  Can she hold a writing utensil?  Yes, albeit not correctly and not without eating it.  Then she does not receive OT.  Their goals are all about preparing Ellie to be successful in school.

10. Perhaps most importantly, you do have 10 days to sign your IEP.  Actually, you do not have to sign it at all if you do not agree with it.  However, note that your child will not be able to start school until an active IEP is in place.

11. See above and STRONGLY consider not signing the IEP the day of your meeting.  The IEP is a living and breathing document.  It should not be typed up ahead of time because, as I have mentioned above, we are a team formulating goals that best suit each child individually.  The diagnostician typed up Ellie's IEP during the meeting.  Yes, there was a vague outline already available prior to the meeting (this is what I received via email a few days before the meeting), but changes and modifications were made during the meeting.  These changes were typed into the computer.  However, upon the end of the meeting, Andrew and I were strongly encouraged to agree without seeing a written print-out of Ellie's IEP.  We refused to sign until we could see the IEP in black and white.

12. Review a written copy of the IEP before signing.  I waited 1.5 days before being able to review the IEP.  I did find a few errors.  They were minor, BUT these are my daughter's goals and I want them enforced.  If the goals are not listed correctly in the IEP, I have no grounds to say "I notice that Miss xxx is not working on xyz with Ellie."  If it is not in the IEP, it does not have to be worked on.  Ellie's IEP has since then been corrected within the system and I have signed it.  The Ellie Bear starts school on Monday bright and early.  I will cry.  Her backpack is bigger than her!

Here are a few examples of Ellie's goals.  Many focus on communication as well as increasing Ellie's attention span.

Ellie will imitate 10 one-word labels or word approximations during 3 out of 4 speech therapy sessions.

Ellie will follow basic one-step commands such as "come, stand, sit, no, stop" in the classroom therapy settings during 3 our of 4 days.

Ellie will attend to and participate in large group activities (i.e. circle time, story time) for 5 minutes with 3 or less prompts, 3 out of 4 opportunities

Ellie will listen to a book being read for 3 minutes in a 1-1 setting with 3 or less prompts, 3 out of 4 opportunities.

Ellie will imitate drawing horizontal and vertical lines, and circles with 2 or less prompts, 3 out of 4 opportunities.

During this meeting, I discovered that the speech therapist is trained in both PROMPT and in the Kaufman Method  This is rather exciting because I had been looking for a therapist (and failed to find one) who is trained in the PROMPT method.  Also, in using the Kaufman Method, the school's therapist will continue the type of approach that Ellie's private therapist is using.  I am very hopeful that great things lie ahead this school year!

Ellie's thoughts on riding the bus.

Finally, I would like to share with you other reader's comments and recommendations for attending an IEP meeting.  Some of these parents have walked this path for many years and some of these parents work within the special education system.  Please feel free to add your own recommendations in the comments section.

J: Make sure you take lots of notes, ask lots of questions, and research everything you do not understand before agreeing to any terms.  My biggest mistake looking back on all IEPs I have attended both for my children and my students is not taking enough notes and then following up on them to make sure everything was done that had been discussed.

J: not necessarily an IEP suggestion, but a great tool is to create a people first pamphlet kind of like a brochure that has pictures, and pertinent information about Ellie to hand out to each of her team, plus other school people like librarian, office, cafeteria, playground etc.

T: Make a list of what YOU need to talk about. Questions and expectations. Star the things you are willing to fight for...bullet the things that would make you happy...leave the rest "gravy"...You can also TABLE the meeting, or call it off before it is ended, and decline to sign, if you feel like you are being bullied, and you want either your husband, a friend, or a legal advocate to join you...Or if you even just want to research and revisit the IEP, AND, it is not stone, even if you sign, you can call an IEP meeting next week, if you want

S: I would bring a little write up about Ellie - what her strengths are; her areas that you would like to see grow this next year. You may even bring a little write up with a few pictures on it for them to remember her by:)

J: My biggest suggestion is more for her future since she has not been in the system long - do not let them reduce or remove services (such as OT, PT, speech, etc) unless you completely agree. The school pulled OT for Z in 3rd grade & I never should have allowed it. She needs those services - they are so vital!

K: Ignore the numbers, they are there to teach your girl and care about her.

A: Bring some cookies to the IEP meeting; let the school personnel guide the meeting, but ensure that you voice any and all concerns; if there is an accommodation that you believe would be beneficial and they say "We can't do that," ask them to put it in writing; relax; and finally, do not feel pressured to sign anything except the attendance papers tomorrow. To reiterate that final piece of advice, *do not* sign off on the IEP document at the meeting. (They will most likely have already developed a "draft IEP," which is frowned upon but done anyway; thus, that document will not truly be a collaborative document including your insight and input, which is the purpose of the meeting.)



I apologize for the long post.  As I mentioned before, this is our experience thus far as it relates to Ellie. This is her first IEP.  I imagine that the process will become more complicated as she gets older and subject matter such as writing and math come into play.  

Even though it all went well, I still felt like this:

Cue: Crying Mama Bear