Friday, August 31, 2012

Preparing to enter Preschool Special Education: the assessment

Ellie's possession of an extra 21st chromosome pretty much ensures that she will be receiving special education throughout her school years.  Upon Ellie's diagnosis of Down syndrome, we started to learn all sorts of acronyms specific to the special education system.  It is comparable to learning another language in my opinion.  ECI, PPCD, ARD, LRE, IEP just to name a few.  To make it even more complicated, some of these capital letters are the same throughout the USA & Canada while some are state-based.  To make it all a bit easier to follow, we are in Texas.

At a private preschool over the summer.  She was the only kiddo with SN.

From birth to three years of age, Ellie participated (actually still participates) in Early Childhood Intervention [ECI].  In Texas, Ellie received developmental therapy services weekly from a licensed social worker.  This therapist provided sensory integration, PT, OT, and speech.  For a very (and I mean VERY) short period of time, Ellie received monthly speech therapy services through ECI from a licensed speech pathologist.  I argued for more services because PT/OT/ST cannot all be effectively implemented in one 45-minute weekly session, but that is entirely another blog post all together!   Anyway, ECI is only effective until the child is 3 years-old.  The day after her 3rd birthday, she is booted out the door.

Ellie turns 3 years-old on September 16th.  She will start school on Monday September 17th.  In ECI, we have started to prepare Ellie for entering the school system.  The BIG KID school as I like to call it.   The elementary school.  In Texas, she will attend the Preschool Preparedness for Children with Disabilities [PPCD].  I am sure it is called something different in other states, but it is PPCD in the Lone Star State.  As I mentioned earlier, when a child with special needs turns 3 yo, she no longer receive services from ECI, but rather from the school district.  This is where people start to toss about the scary acronym of IEP--Individualized Education Plan.

As per WikiPedia, An Individualized Education Plan or IEP is designed to meet the special educational needs of one child, who may have a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would.[1] In all cases the IEP must be tailored to the individual student's needs as identified by the IEP evaluation process, and must especially help teachers and related service providers (such as paraprofessional educators) understand the student's disability and how the disability affects the learning process.

I have heard great things and I have heard horror stories.  I have heard about battles between the parents and the school district.  I have been scouring blogs for information and educating myself about Wrights' Law.

I do not intend to go into our school with guns blazing, but rather with coffee and donuts.   I do not think the special education teachers and therapists go into their field of work with the goal of having it out for my child.  I do believe that they are trying to provide a realistic education plan that will best serve my little girl.  However, I also believe that I know my child best.  I know how she learns best and I know what motivates her.  I also know what her struggles are and areas that greatly concern me.  We are all a TEAM and as a team, I do expect to be allowed and encouraged to make recommendations and to have my concerns and ideas heard.  As a team, I also intend to listen to them with an open mind.

One issue that greatly concerns me is that many school districts, including Ellie's, does not use signing [ASL] as a form of communication, but rather Picture Exchange Communication [PECs].  While Ellie Bear somewhat grasps the concept of PECs and even uses pictures to request the iPad or Mr. Potato Head, she mostly communicates with signs--or should I say gross approximations of signs.  I do wonder how this falls under the special education laws?

We have not met to discuss Ellie's IEP yet.  It is in 2 weeks.  I am literally peeing my pants with anxiety.   Yes, there will be a blog post about the IEP.  Yes, you can bet on me having several panic attacks.   Who would like to watch my daughter while I sweat it out at the school?  Who would like to hold my hand while I sit next to the education team?

Where are we in this process right now?

The Screening:
Last month there was a screening to determine Ellie's eligibility in participating in the PPCD program.  Yes, I recognize it is a bit laughable because a diagnosis of Down syndrome which encompasses intellectual disability and speech impairment automatically qualifies her for services.  Therefore, the screening was more of a formality and it included a team of two special educators.  The testing room was a large playroom.  With a slide.  A tall slide.  Ellie stormed into the room, waved "hi", removed her shoes, and made a beeline for the slide.  She spent the next hour eating a black crayon, briefly working on a puzzle & shape sorter, putting everything in her mouth, running, sliding, running, sliding, running, putting the baby down the slide, running, and sliding.  She was silent nearly the entire visit except for the one time she said "car" and attempted to say "guitar".  She did show off a smidgeon of her fine motor skills which was beautiful.  Ellie really proved to the screening team that she does indeed have Sensory Processing Disorder with severe motor and vestibular seeking behaviors and extensive oral cravings & mouthing.  I think that the team was rather fatigued just watching her.

At the end of the screening, I was informed (very nicely) that it would be likely that they would recommend placement in a special classroom within the PPCD program.  She would not be at her home school with kids from her neighborhood.  With kids that are both typical and with special needs.  They believed that her "extra" needs, meaning her excessive mouthing, her incessant climbing, her poor attention span, her sensory processing disorder, and lack of communication meant she needed more one-on-one teaching which she would receive in this special classroom.  I was a little shocked, but not devastated.  The thing is, I know my daughter has motor and oral seeking behaviors.  I know that they [the behaviors] create real safety concerns and that they impede her learning.  I know all this and I want what is ultimately best for her.  I spoke with her developmental pediatrician afterwards and she agreed that a more one-on-one type setting would be most beneficial for Ellie even if it meant a noninclusive environment at this early age.  For the past 2.5 years, I believed my daughter would be attending the school down the street from our house and at the end of the screening, I was left wondering exactly what school she would be going to.

Shortly after her screening, I became familiar with LRE or Least Restrictive Environment.  This means:

As per WikiPedia: Least restrictive environment is identified in the U.S. Individuals with Disabilities Education Act... By law, schools are required to provide a free appropriate public education (FAPE) in the least restrictive environment that is appropriate to the individual student's needs.
"Least restrictive environment" (LRE) means that a student who has a disability should have the opportunity to be educated with non-disabled peers, to the greatest extent appropriate. They should have access to the general education curriculum, or any other program that non-disabled peers would be able to access. The student should be provided with supplementary aids and services necessary to achieve educational goals if placed in a setting with non-disabled peers. . .Because the law does not clearly state to what degree the least restrictive environment is, courts have had to interpret the LRE principle. 

The Assessment:
Yesterday Ellie completed her play-based assessment at the elementary school with a team consisting of a special education teacher, a speech therapist, and a child psychologist.  Our ECI developmental therapist was present as well.  Our ECI therapist was a life saver.  She has known Ellie for 2 years and 11 months and guided Ellie through the assessment.  Our therapist really showcased Ellie's strengths, but she also drew attention to her weaknesses.  This is really important because now the team can formulate realistic, appropriate, and attainable goals for my daughter's development and education.

In an attempt to provide a peace offering, I brought donuts with me.  The team mistakenly believed I brought them (all dozen apparently) for Ellie.  Contrary to popular belief, I do not typically stuff my hyperactive toddler Bear full of delectable, deep-fried, sugary confections.  Donuts 1.  Donuts 2.  I also dressed up to show that I am a professional, meaning I didn't wear shorts or flip flops and I wore foundation, a necklace, and earrings.

I should also probably mention that in the past month since her screening, we (Andrew, myself, Dr. F from developmental peds, and our ABA therapist) have really worked with Ellie on decreasing her mindless climbing, increasing her attention span, and decreasing her distractibility.  She has come a LONG way in the motor seeking behaviors (climbing, swinging, hanging), but the oral seeking is as bad as ever.  Let's just say that the team could not believe they were watching the same sassy little girl.  The child that previously behaved like a human pinball/wind-up toy was actually sitting.  GASP!

Back to the actual assessment...Ellie did utilize the slide a fair amount in the beginning, but then she calmed down and worked with the therapists on tasks that required her to sit at a table.  Anticipating Ellie's propensity to munch on crayons like a major food group, the team had the nuggets of colored wax strategically hidden.  However, Ellie ate a marker.  No lie.  She bit right through the plastic.  Jaws of steel, this kiddo!  Ellie also showed off various signs paired with vowel sounds.  While the team was performing this 2 hour long play-based assessment, I filled out a novel a packet of developmental test questions that required the usual always, sometimes, never, or not able to responses.  I loathe these forms.  Most of these questions were a tad ridiculous for a 3 year-old, which the therapists thankfully acknowledged and agreed with me.  Apparently, this specific test is applied to kiddos up to age 6.  No, my child does not say 6-word sentences.  She only says 6 words total and certainly not combined together--Mama, Dada, Ball, Yeah, No, and Car.

Their assessment, along with my answers to their questions, suggested that Ellie has a lot of splintering in the different developmental categories.  What this means is that there is no continuum across the one developmental area (social, self help, fine motor, gross motor, cognitive).  For instance, she may do activities socially that are very appropriately for a typical 3 year-old, but in other social areas, she is at an 18 month-old level.  She can do complex problem solving, but in other areas she cannot "connect the dots" so to speak on more simple tasks.   She also has great difficulty generalizing.  For example, she understands the command "clean up", but you have to be very specific on how to do it such as "books on the shelf" or "blocks in bucket".  While splintering is not extremely uncommon among those with special needs, it is not very typical among those with Down syndrome.  Interesting is all I have to say on that matter.

At the end of the assessment, I was informed that the team will recommend at her IEP that the best placement for Ellie would be at her home school in a typical PPCD program!  This is an inclusive program in which half of her peers are typically developing children (these are preschoolers that are children of the school's staff) and the other half are children with various special needs.

Thus far, I have learned a great deal from this process.  I have learned that all school districts are different.  My friend's little boy who does not have Down syndrome in the neighboring district had a 20 hour assessment--4 hours/day x 5 days in which his mother was not present.  Whereas Ellie had a whopping 2 hour long assessment.  Do I think they gathered enough information during this short assessment?  Yes, because Ellie was having a typical morning.  She showed off her strengths and her weaknesses beautifully.  She was behaving the way she normally behaves at home, at her regular preschool, and at playgroups.  It was not a bad day or a good day, but a "normal" day for her.  Now, if she was a cranky pants and Little Miss Clingy, then I might say differently!

It will be intriguing to see how her IEP meeting goes.  Good thoughts and prayers would be greatly appreciated!  I am still a novice and I would love for you to share your experiences and your advice.


  1. Good luck!! I'm so glad you feel that they were able to get an accurate assessment of Ellie. I find that that's half the battle sometimes, where the parents feel like the evaluators couldn't get the necessary information needed to assess the child. Anyway, your photos are priceless - she is such a little pixie!! Glad you're doing the donuts approach. :-) Sammi's preschool was not inclusive - they don't have a public inclusive preschool model in our county, but the SpEd preschool was great anyway. Samantha got a lot out of it, and was ready for Kindergarten when the time came.

  2. Our daughter Vada, will be turning three in March but we have decided to home school vs. sending her to a school. However, this post was SO helpful and insightful! Thanks for sharing! And I have to say, even though I know you already know this, but your daughter is a beauty and her eyes are amazing!

  3. Oh, the signing. You know how I feel about that! I don't actually remember a screening AND an assessment but I can't say we didn't have one and that first IEP - well, it's rough, I won't lie. But I'll be thinking good thoughts for you & know we'll all be here rooting you on, ready to celebrate and/or pass (virtual) kleenex.

    If you want the nitty gritty as to WHY it is so bad, I'll send you an email. I don't know if they do it the same way in TX, if it would help prepare you, or if it would just be angst inducing. Everyone processes things differently. On a bright note, they get a LOT easier afterwards!

  4. Wow, what a journey. I learned a lot reading this.

  5. Thanks for taking the time to break this down! We are in the thick of early intervention, so I don't really have an understanding of the in's and out's of special education. I learned a lot. I am looking forward to reading about IEP.

    Claire Imsen

  6. I love reading about what other parents are doing with their kiddos with DS. Benji will be three next April. They are doing an evaluation for him this October beginning to prepare for his next transition. Right now he is receiving therapy through Tri-County Regional Center out here in CA. He has Early Intervention, PT, OT, and Speech. I am very thankful that they come to my home. They also will drop him at age three, and then he is suppose to go to the school system. I homeschool all my kiddos, so we are planning the same with Benji at this point. I am told that there are more home options if we do not plan on putting him in the school system. I was not told this, though, until I told them I was not putting him into the school system. But they still want me to go through the process of preparing for the school system to see what he qualifies for. SO much to think about.

    I learned a lot from this post!! I will be praying for this new transition for all of you.

  7. I am glad it ended up the way it did for you. That least restrictive environment is key. We are headed for an IEP for placement in kindergarten this coming up year. I am nervous but hope all that come to the table have the best intentions for my child. That is all we can ever hope for as parents and then advocate when we need get the best for our child. That is not always easy but, I believe, as parents we do know best.

  8. My husband deals with anxiety/panic attacks too and he wont go with me..he cant..and at times it angers me very much but i know he cant help i try to be very understanding and i also bring an advocate with me too..I will def be thinking of you and saying some prayers for your upcoming IEP meeting. I found it very helpful to just have a quiet bible study with my bible and look up verses where he promises us peace in times of need the night before my IEP meetings.. "Now may the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you." 2Thessalonians 3:16

  9. Great post Anna! I came across your blog while I was online doing some research on the symptoms of an anxiety attacks and panic attacks. I'm happy I did because I love reading posts like this, Thank you for sharing your story with us!

  10. We just went through assessments, but in our state/town, they were a bit different. One thing that was very much the same is the part where you have to "Never, Sometimes, Often, Always" decide on behaviors & skills that are completely unrealistic for a 3-year-old - or a non-verbal child. Or questions that ask what my kid feels or thinks or worries about - I wish I knew! I also loved the original paperwork we filled out a year ago for neurological & developmental testing - ones that had questionnaires designed for children up to teen years. Has my child ever taken narcotics? Has my child had problems with alcohol. Well, I certainly hope not, since he's not quite 2 years old yet. Has he attempted suicide - well, no, not unless you count the usual clumsy toddler stuff that makes you gasp as there heads barely miss tabletops.
    So far as the 2-hour eval - I think ours was less for preschool - not a ton less, but less. And it's not a good measure most of the time I think. You have to get your kid on the right day, in the right mood in order to really show the child that they are. I joked to some during the evals we did recently, both with the school & with our specialist - he may do fantastic on short evals if he's in a good mood. But come to our house for 24 hours - heck, even 8 would probably do.
    But you gotta do what you gotta do.

    1. Your assessment sounds a bit like ours. I just skipped the ones about her reading, math, drug and alcohol use. Clearly a tool designed for older children and not 3 year-olds! I wish you luck with your evaluations and IEP meetings. From what I hear, the first IEP is the easiest IEP! Ellie has only been in school for a few months and already we had a second IEP to discuss OT services. It was really anticlimactic. Take many deep breaths and lots of notes!

  11. The issue is something which not enough people are speaking intelligently about.
    dayhome agencies in calgary

  12. Everything is very open with a precise description of the issues. It was really informative.
    Calgary daycare


I love your comments and I read each and every single one of them.