About this blog

I am a high school human anatomy and physiology teacher by trade and I double as a mother of a little girl with Williams Syndrome. When my daughter was diagnosed, I was thankful that I understood how the body worked so I could navigate through the condition and understand what the doctors had to say. This is my way of sharing my knowledge so other parents can have that same power.

Information contained in this site is strictly for education purpose to better understand the conditions associated with Williams Syndrome. You should in no way use this site for diagnosis, treatment or medical guidance. Always seek medical advice from your doctor.

Wednesday, February 24, 2016

Navigating the School System- Kindergarten

As my daughter enters her fourth semester of Kindergarten, I've been reflecting on many of the experiences.  In the beginning I wished there existed a guide for new parents on what to expect.  This post is my guide for you now that I've nearly completed the special needs Kindergarten experience.

Before I begin, I just want to point out that school systems vary from state to state (in different countries, of course) and even from city to city and district to district, so the meetings I've had may be different than yours.  My family lives in Missouri.

Getting started...

Believe it or not, Kindergarten begins in preschool.  That may sound ridiculous but the planning it takes to be ready for your child's entry will start around January of the previous school year.  School districts vary but you'll need to register your child around that time of year.  I began registering Katie just like she was planning on attending regular education classes.  This will get the process rolling.  At this point, you may have many questions and doubts about what services your child will need but those conversations will come later.  One question you might ask is about Kindergarten testing.  Most kindergartners undergo readiness testing to give teachers baseline data about their pre-academic skills.  If your child already has an IEP (individualized educational plan), they may not be necessary.  I went ahead and signed Katie up but then talked to the Kindergarten teacher at her school about opting out.  Your child's Kindergarten teacher will learn much more about your child's readiness through an IEP than in that testing.

Later in Kindergarten, your child will go through various intelligent testing, developmental assessments, and tests to determine their need for additional therapy.  These are separate from the school-wide kindergarten testing that all Kindergartners take when entering the elementary school.

Creating the IEP:

After registration, you'll expect to have an IEP meeting at some point in the spring to determine your child's placement.  Some districts might do testing depending on your child's cycle.  This will be a big meeting.  You should expect to have the typical team there- the principal, preschool team (preschool teacher and all their preschool therapists) but you'll also have representatives from your child's school age team.  We had a Kindergarten regular ed teacher, School age special education teacher, occupational therapist, physical therapist, speech therapist, resource teacher and a music therapist.  You will also have a case manager from the department of special education who will lead the meeting and if your child was tested, you may have a diagnostician as well.

Because there are so many new faces who have never met you or your child, it's smart to come prepared with something that the team can use to acquaint them with your child.  I created a "Meet Katie" flyer.  Here are some things you might want to consider including on your meet sheet:
  •  Several pictures of your child-  pick ones that show your child's personality.  This was the most popular part of my child's IEP meeting (news flash- our kids are cute!)  Seeing her sweet face makes the people in the room want to meet her and work with her.  It keeps your child's best interests in mind and makes the meeting more personal.  It is important to keep it child centered and the pictures will help accomplish that. 
  • Your child's likes and dislikes- this will save your educators time figuring your child out but will also give them ideas of ways to motivate them and write appropriate goals.  This is an important part of planning.
  • Academic and personality strengths- your IEP team will want to monopolize on your child's strengths.  By knowing things like if they love to listen to music or that they learn well by singing, they can use those things to give your child access to the curriculum.
  • Academic weaknesses or personality challenges-  Many times these will help shape the goals your team writes.  You want them to work on the challenges to help your child overcome them.
  • A condensed medical bio with information that is specific to her school setting-  if your child is like mine, the medical information could be a textbook so for this purpose, stick to the important things that will affect them academically.  You'll have opportunities to discuss the medical issues later and many of that information may already be recorded in their records.  Examples of things I shared are allergies and visual needs and muscle tone.
  • List of concerns-  Write down all your worries for the new school year.  Most of mine were centered around safety and personal care such as potty training, roaming on the playground, and physical education and playground safety. If you want your child to have a one-on-one aide or paraprofessional, this is the information that will be important in determining that.  I never came out and requested that.  I just set the stage for the obvious importance of it and let them suggest it.  
  • Parent wishes we have for her kindergarten setting and future-  This was the part I wasn't really ready for but it's really important.  Think about what you want for your child.  It's really easy to get lost in the details of what they need today and overlook the big picture.  Think about your child's interests and how that might influence important skills if they turn those interests into career choices.  Also think about the level of support your child will need to access regular education classes.  Inclusion is very important and something you might want to ask for in regards to shaping her goals and support.
This "meet" sheet can be an important tool that you can use in order to gain the support you want for your child.  For example, some teachers may not be familiar with the growing resources available in assistive technology.  If this is something you want for your child, tell them about how you might use a tablet at home to motivate your child for potty training or picky eating or that the tablet is used at home to help them practice their writing skills.  Spelling out small things that you know are successful for your child in this sheet will open up dialogue about how the school can extend those "tricks" to the classroom and improve their chance for success.  I also used the sheet to get a paraprofessional aide for my daughter.  I didn't spell out that it was my goal to have a 1:1, but I told them about how my daughter has wandered away from our house when unsupervised before or that she has trouble navigating on the playground to the point that it's dangerous for her to climb and slide without support or that she walks very slowly and tires easily.  These are all setting the stage to show the importance of an aide.  The team actually ended up suggesting it first before I even had to ask.

In addition to my child's meet sheet, I also came with tear aways from the WSA website, professional articles that might interest the team and the infographic I created in a previous post to share great strategies for helping kids with WS.  I had very good reviews from the team over these materials.  Not only does it provide them with a good idea of who your child is and what they can do but it also gives them research driven practices, something teachers value.

Williams syndrome association website- Information for Educators

Williams syndrome association website- Resources for Education and IEPs

Understanding Williams syndrome infographics for teachers

The final bring along is not a material thing, but an advocate.  Often these meetings can feel surreal and stressful and it helps to have someone in the room who is not committed to either side who listens objectively and is familiar with the IEP process.  They can point out overlooked needs and concerns and act as a mediator.  I brought our case manager from the Department of Mental Health.

The meeting...

In the meeting, you'll discuss the child's success and progress in the preschool setting.  You'll probably move around the room from teachers to therapists to share their goals and recent data they collected.  Then if you are due for an IEP update in the preschool setting you might set or revise those existing goals.  From there, you'll move on to the school age team.  They'll build on the preschool goals but add in some others using Kindergarten curriculum in mind.  Many parents entering Kindergarten have trouble coming up with goals they want for their child.  For this portion, I would come prepared with a copy of the regular education curriculum.  I made a list of the curricular goals and starred the ones that were appropriate topics for my daughter developmentally or ones that had skills she needed work on to bridge her access to those goals.  Then as the team went through their prepared goal ideas, I'd check them off.  When you reach the end, you can bring up any that they didn't discuss.  This helped me keep my priorities in mind so when I got home I didn't feel like something important was overlooked.  Also, don't forget to think of self care needs that will help your child make their way through the school day more independently.  Examples include zipping their jacket, navigating stairs, playing on equipment, participating in PE, carrying a lunch tray and using the restroom.

To find the General education curriculum for Kindergarten, I used my school's website.  They make the curricular goals public on the website for parents to see.  If you can't find that, you can contact the school before your IEP and ask them for a curriculum handout and/or copy of the Kindergarten report card.  Using the grade level expectations to make your goals is smart.  Curriculum is carefully written by a team of teacher experts and is aligned with developmental growth and preparation for future grades.  Even if my child may not fully meet all those goals by the end of the Kindergarten school year, those are standards I want her to reach in her own developmental time.

Here are common Kindergarten goal progressions in my child's school district that you can use as a guideline.  We started with the standards listed early in the list and then as she learned those, progressed into the more advance skills later on the list.  In my daughter's second year of Kindergarten, she focused on the skills at the later parts of the list.

  • Math:  counting to 100, Writing to 31 (may be part of an OT goal also), counting objects, comparing numbers 0-31 such as greater than less than (a spatial task that may need special education support), adding and subtraction, patterns, sort graphing, position words (ST goal as well)
  • Reading:  Phonics, letter recognition, tracking print, writing full name (also an OT goal), parts of a book, rhyming word families, counting syllables, blending sounds to read, vocabulary- opposites (also a ST goal), recall and comprehension, making inferences in text, writing alphabet (focus on lowercase first), sight words (we have been very unsuccessful with this)
  • Physical education:  walking, hopping, skip, gallop, jump, run, slide, throw, catch, striking, kicking, dribbling, hand/foot coordination and motor planning.  We focused goals on many spatial activities to build her balance and confidence with motor planning so she could participate in PE such as visual tracking items and balance and coordination.  We also made goals on following multi-step directions and following rules of a game.
In addition to these academic goals we had self care and social pragmatic goals.  These include using buttons, scissors, snaps, zippers and answering wh- questions appropriately, and social conversation skills.


After determining the goals, the team will discuss the appropriate placement for your child.  You will want to use terms such as least restrictive environment, inclusion and meeting your child's needs.  It's important for you to create a balance between your child's need for independent or small groups settings and inclusion in a regular education setting.  It's important to understand, your child can have their own individualized mixture of these throughout their day.  This placement will be a very individualized decision but here are some potential options. 
  • Full inclusion in a regular classroom
  • Full inclusion with a paraprofessional aide and/or push-ins of special education teachers and therapists.
  • Participation in a regular education classroom with pull outs with a resource teacher who works one-on-one over IEP goals.
  • Participation in a regular ed classroom with pull outs for therapy or time for individualized instruction in a special education classroom.
  • Full day special education classroom
While full inclusion can be the ultimate goal, you may find that your child really responds well to individualized instruction.  Ultimately we chose partial inclusion with pull outs for therapy and individualized instruction in reading, writing and math since Katie's skills are below grade level and she shows more growth in individualized instruction in these areas.  It's important to remember that what ever you chose, there is no wrong choice as long as you have your child's best interest in mind.  You can always change those minutes based on their needs.  For example, my daughter responded well to the social activities that supported her vocabulary and social pragmatics goals so they moved her from individualized speech and occupational therapy to a group session and her growth has been substantial.  These choices can be fluid and can be changed anytime in the year with the request for an IEP revision from the parent or teacher.

 Before school begins...

Sometime around August you'll learn who the teachers and therapists your child is placed with.  I used this time to send them an email and give them copies of all the meet sheets, infographics and WSA information.  This will give them places they can go to learn more about WS and plan their instruction.  This is a great time of year to contact teachers because they are refreshed and excited for their new students.  There is plenty of time for them to read about research since their schedules haven't been filled with the endless school year tasks.  It's also really nice as a teacher to understand their students before they even meet them.  It'll reduce the transition time where they are trying to figure your child out and get to know them. It is not uncommon, especially if you belong to a large school district that the people at the transition IEP are different than the professionals your child ends up working with.  It's important to establish a good, professional relationship with them early.  It will open up easy lines of communication and provide them with resources in case this is the first time they have worked with a child with Williams syndrome.

Managing school wide events:

One of the hardest parts of school transition for me was school events.  Nights like open house, fall festivals, field trips, etc. are a whole other source of stress and trepidation because your child has those special needs and may not be able to fully or independently participate in those situations.  Never fear, you can become an advocate for them so they are fully integrated and you can become an important part of your school community.  It takes a little work and a lot of talking, however.

To start, within the first month of school you'll have open house.  For me, this was a really difficult night.  If your child is in a regular education setting for at least part of the day, you'll hear about things they will do that you don't feel ready for yet.  It's also hard to hear about things your child might miss because they are in therapy or in the special ed setting.  I found that it's much easier to talk to your child's regular education teacher separately so you can get a better sense of their day versus everyone else's schedule.  This is also a good time to really express what expectations you have for your child to participate in.  For example, my daughter is highly motivated by social opportunities so when she would have missed the "carpet time" where the whole class participates in calendar, story telling, weather lessons, etc, she was missing out on a very motivating activity for her.  Her teacher happily switched her daily schedule around to include Katie in this activity.  That kind of minor change probably wouldn't happen if you as a parent don't express to the teachers what your child needs.  It's important to say, I didn't outright ask for this, it was just implied through open dialogue based on Katie's needs.

Field trips and school community events can also be a source of stress.  I do everything I can to participate in these and help modify the setting in simple ways to make it fully inclusive.  When there is a carnival game at the school festival and Katie couldn't possibly throw the ball that far, I would simply talk to the game supervisor and explain that she has special needs and would be more successful if she could step closer to the game.  If she's at a field trip at the crowded zoo, be sure she has a school staff member there in her group to specifically keep an eye on her.  I've even volunteered to come and managed to have two adults to my one child.  All it takes is thinking about what issues you might encounter and being proactive to your child's needs by bringing those issue up in advance.

I will note that although your child may have difficulties in these situations, it is not worth missing them!  Your involvement with the school community allows your family and your child to become closer to the people she sees on a daily basis and by making those strong connections, the more opportunities and support you will find as people grow to know and love your kid and your family.  I've made a big effort to get my daughter involved in typical community activities such as scouts, after school clubs and school events in additional to special ed activities.  I've found that people are very accommodating and it quickly spreads awareness and understanding for others.  It's also important to note that parent involvement is important.  Although we all need the respite, scouts may not be the best place to drop your kid off so you can take a break.  I always volunteer to help my child during those meetings if she needs the one on one attention.  Most after school activities are not going to have the same adult support as expected in school.  I always make a point to attend until I can establish that my child will be independent enough not to put extra stress on volunteers such as scout parents.


Depending on how your IEP goals are set up, reports from school can come in various ways.  For a while, my daughter was sent home a daily behavioral report that on every day said "she was happy!  She had happy hands! (didn't touch others or hit)  She worked well!  She had a great day!"  This didn't help me understand her academic growth or truly understand what she should work on at home.  By telling my daughter's teachers this, we changed up reporting by getting some simple tasks we could do at home to help support her school day.  This doesn't mean homework, necessarily, but would include things like stretching, letters she's working on that we can point out in books when we read or topics aligned to games she can play on the tablet.

Report cards are another way you'll learn about your child's progress.  Katie has a modified curriculum.  She's basically graded by her goals in her IEP, not the standards on a report card.  The only thing she is graded on is behavioral expectations by her general education teacher.  The special ed teacher and her therapists report on her academic growth via IEP benchmark reports.  She receives quarterly reports about her progress towards those goals.  Your child's reporting may be different depending on their goals and the level of inclusion they have in the school setting.

Getting a School Age Diagnosis

Some time within the school year your child will most likely undergo school age diagnostics.  Your child will undergo a series of developmental measures in order to get a school age diagnosis. A school psychologist will contact you to set up testing and send home surveys for you to fill out.  They'll most likely determine your child's IQ based on one of the psychology measures.  I provided her with information from the Williams Syndrome Association website on academic testing so she picked the appropriate measurement tool for assessing children with WS.  I also provided the speech therapist the academic journals on testing for speech and language.  Both people were very interested in this literature and used it to make the best choices for their testing and analysis methods.

Dr. Mervis' published paper on Williams syndrome speech development

Williams syndrome association- Testing and evaluation strategies

Neurocognitive profile of Williams Syndrome

School Age IEP

After your school age diagnosis has been determined, the full team will meet to go over the results and reevaluate eligibility of services.  Often your services will remain the same and other times you might find there will be adjustments made in the minutes offered in various therapy and special education settings.  Depending on the type of measure they use to determine your child's IQ, the data will vary.  It's important to focus on the subtest numbers, however rather than the overall IQ and classification.  Because WS is a disability that has strengths as well as deficiencies, your child may have an overall lower score IQ than expected because the spatial tasks will likely be very low making the overall IQ a poor predictor of their success in the general education setting.  The subset scores will be a better measure of your child's strengths and needs to help your team determine the best settings and goals to help your child grow academically.

During this meeting, it is possible that the IEP is revisited and adjustments can be made to goals you made during the transitional IEP.  The diagnostic tests can contribute to this discussion but benchmark goal assessments by the educators and therapists should also be taken into account to see if goals should be adjusted based on your child's growth.

Requesting additional services

There are other services that your child can benefit from that are not a part of the preliminary testing and service determination.  After you have established some goal assessment during the school year and your first IEP report is delivered, you can request your child be tested for eligibility for assistive technology, adaptive PE and music therapy.  All three of these programs are designed to use measurements that are established, offer the program and retest under those program's conditions and compare to see if the child shows increased success using an alternative form of instruction.

For example, say your child is learning to count 1-100.  On their benchmark, they can count to 39 but then get the numbers in the wrong sequence or skip the 40's.  The music therapist can then do an assessment to see if they are more successful when counting if it is taught with music.  If the child shows a significant difference in the numbers they can count to with music than without, she will qualify for music therapy.  Music therapy goals are supportive of the main IEP goals so a few will be chosen from the already established IEP that they will work on in support of the general or special education teacher.  They'll report on the child's success on those goals in the music therapy sessions.

In adaptive PE, a special education teacher will accompany your child during the regular PE class and determine if their is a need for special instruction on skills used during that gym unit such as staying focused on the activity such as knowing where to stay put during stretching or warm-ups or understanding the rules of the game.

Assistive Technology is using tools and technology to bridge the gap between your child's ability and the general education setting.  It can be low tech items such as a slanted desktop, adaptive pencils to improve grip or schedules printed out on their desk.  It can also be adaptive technologies such as one button mouses for computers, touch screen computers or tablets.  During the assistive technology meeting, the specialist will want to know skill gaps, motivational strategies and needs of the student to determine their technology needs.  Basically you can't come out and say you want your child to receive a school issued tablet.  You have to establish a need for one through well crafted descriptions of your child's needs.  Some examples of ways my daughter benefits from assistive technology:

  • She uses a touch screen computer to navigate school programs used in the classroom such as reading programs with computer voice to text programs and games such as starfall.  She can navigate these programs independently during center time with a touch screen versus using a mouse.
  • She uses a tablet with a program called "clicker connect" for reading comprehension and writing activities.  Since she is still working on writing but has good comprehension skills and story telling skills, she can use this program by clicking on word boxes that they read the word to her and then drag and drop them into sentences.  With this program she can answer comprehension questions, do writing activities and practice Kindergarten activities such as building sentences using proper nouns and punctuation.  This program is very successful in activities where physically printing the sentence is less important than crafting the words to form sentences or answer content related questions related to the story the children are studying.  If the child could not originally participate in these activities because they couldn't write their answers before, then this gives them access to that portion of the curriculum.
  • She uses various other programs on her tablet during school activities such as tracing letters and shapes, matching rhyming words, phonics programs and vocabulary building programs.

Determining if you should repeat Kindergarten:

At the end of the school year, many WS families are faced with the choice on whether you should repeat Kindergarten or move on to 1st grade.  This is a personal decision that should be considered based on the child's developmental level.  These are a few things we considered when weighing this decision:
  • Would your child benefit most by repeating this grade level's curriculum?  Kindergarten has elevated in rigor and complexity with common core expectations.  No longer do Kindergartners only learn their letters but reading and arithmetic is expected.  It's important to look at the skills that a 1st grader and a kindergartner are doing in the general ed classroom and compare them to the developmental level of your child.  Are they still trying to master Kindergarten skills or are they ready to move on?  Even if your child has a modified curriculum and get special education services if they spend time in the general ed setting you'll want them to access appropriate curriculum in the general ed settings.
  • How would retention affect your child socially?  Although we decided to keep my daughter in Kindergarten another year, I do have some social regrets with holding her back.  She created some strong friendships in her first year of Kindergarten and the transition away from those friends was hard on her at first.  At times we see her 1st grade friends at school community events and scouting events and part of me regrets breaking those ties.
  • How will retention now affect her services during transition to adulthood programs?  This is a hard one to answer because services offered between the ages of 18-21 may look very different by the time my daughter reaches that age level.  But, these are important questions to ask.  I did some investigating in the special school district in our city to consider what my daughter's choices might be.  If you hold back your child now, they'll graduate a year later than usual and may have less time to participate in transition programs that prepare your child for post-high school programs and job placement opportunities.  
Ultimately, we decided that since our daughter was delayed approximately one year in age developmentally, it would benefit her socially and academically to have another year to developing the basic skills she needs to access general education standards.  It would give her a greater opportunity to successfully participate in the general ed setting.  It's important to know, also that if your child has a modified curriculum, they can move on with 1st grade level skills while still in Kindergarten if they are ready before the end of the year.  For example, in the 2nd year IEP we determined that some first grade math skills such as time telling would be an appropriate next step since she has responded well to counting and adding and subtracting with manipulatives.

The takeaway...

Kindergarten can be a stressful time because any transition is!  The fear of the unknown, a new team, a new school and new classmates... it is a lot of people to educate and hope they have your child's best interest in mind!  The best advice I can give you is 1) establish yourself as an expert on your child's needs and educate your child's team on WS  2) Participate in as much as you can so that you become part of your school community and build strong, positive relationships with the teachers, parents and therapists  3) Educate yourself on the school curriculum, resources and services your child can benefit from and ask for them  4) Take a deep breath!  Your kid will do great and you'll be amazed as you watch them grow before your eyes.