Preparing your child for medical procedures

My daughter recently underwent surgery and I was anxious about how she would respond to a hospital stay with various tests and procedures.  After doing some research, I learned some strategies you can use to help your child understand what will happen at the hospital and tips on reducing your child's and your own anxiety.  Here are the resources and strategies I used:

Prepare yourself
Before you communicate with your child about the procedure, you need to prepare yourself.  Children can sense anxiety and worry.  If you are worried, they'll pick up on that easily and in turn become worried themselves.  It's important for you to become educated about your child's condition and the procedure so that you are comfortable talking about it and giving them honest answers to their questions.  It's important for you to be knowledgeable and open with your child so that they develop trust.  It's best not to have unexpected surprises or to give them false information about what will happen.  This can create fearful or negative experiences.

Resource:  Taking the work out of blood work
 
Prepare your child with play

Role play can be an ideal way to explain what will happen to children in terms they can understand.  I used a social story made by the Cleveland Children's hospital to direct my daughter's play.  You can print the pdf and let your child color on it if they'd like.  Katie has never been interested in coloring so we used it as a story and went through all the procedures with a stuffed animal of her choice.  We acted out each step with a toy doctors kit and Katie played doctor.  After I read each page, she'd act it out by asking her animal questions and explaining what would happen.  It helped her understand what she'd experience when undergoing surgery.  We even made a pulse ox monitor, IV and wrapped her kitty with gauze and duct tape to simulate the casts that Katie was going to get.  We signed Kitty's casts and took her to the hospital with us.  The nurse there gave her Kitty a hospital bracelet to match Kate's.  No matter what procedure you are preparing for, there are many social stories on the internet that you can find and use.  Role play is a wonderful way to prepare your child for the procedure they'll undergo.

Katie's role play with Kitty

Resource:  My going to surgery book

Read books that show a happy ending

Since Katie was getting casts on her legs, I found a couple books with related stories.  One was a Doc McStuffins book about a toy that hurt her leg and needed a cast.  When the cast came off she could dance again.  Katie responded very well to this- even asking the day following surgery if she can take the cast off so she can dance :)  However you chose to explain the procedure, be sure they understand WHY they are doing this.  Knowing the surgery will help them walk or the heart doctor will make sure they have energy to run and play will give your child a tangible reason why they should tolerate the procedure.

Here is a list of books suitable for preparing your child for hospital visits.  There are often resource libraries at your local hospital that you can use to check out books on these topics. The family resource center at St. Louis Children's Hospital is staffed with nurses that can help you find resources for both parents and children to help you prepare and become more educated on your child's condition.

Search for social stories videos and apps

Youtube has many videos of procedures that are made for kids to see what they can expect.  Preview these videos to make sure the content is appropriate!  There are also many apps for apple and android that allow you to build your own stories.  You can take pictures of the hospital during a visit of the tests or tools that instill anxiety and help your child view them so they become comfortable with the environment.  This is a great way to help them ask questions and slowly become acclimated to the objects that are their source of anxiety.  It can be especially helpful if your child has a procedure that they have to do often and don't tolerate.  For example, if they don't tolerate the echocardiogram, take pictures when you go of the room, equipment, doctors and nurses and let them look at them often.  It'll help make them more comfortable in the long run.

Apps that are helpful to children with special needs

Prepare your child for painful procedures

Don't tell your child that a procedure won't hurt if it will.  You can acquaint them with the pain scale so they can better communicate their feelings.  If they are getting blood drawn or an IV, you should explain that it'll feel a pinch and then the pain will go away.  I counted with Katie during these procedures and told her that she'll feel better when we count to 20.  This helps.  If your child has anxiety over procedures like blood pressure measurements, use visual cues to help them control their anxiety.  Katie went through a phase where the blood pressure cuff would put her in a panic.  I told her to be brave and calm and showed her the gauge on the blood pressure cuff so she can see the needle sink.  I told her she was getting a tight hug on her arm and then we could watch the needle go down and when it got to the bottom she'd be finished and could cry if she wanted to.  It worked!  She stayed quiet during the reading and then cried when it was finished but after a few times doing this, she tolerates the screening.

Take a tour of the hospital

If you live close enough, visiting the hospital and doctors that are involved can help alleviate anxiety of being in a new and unfamiliar place.  Especially if your child is undergoing anesthesia, a pre-surgical visit will be important to reduce risks and help your child become acquainted with the location.  Some hospitals even have pictures and virtual tours you can access on their website.
 

Access the Child Life Services

Most hospitals have Child life coaches who are trained to help explain to children what will happen in their own terms.  They have games, sample tools and distraction materials you can use before, during and after procedures.  They are important resources for parents, too!  They are trained to answer questions in easy terms and to relieve anxiety for families.

Bring a comfort item

Whether is a tablet to watch a favorite show or a stuffed animal to snuggle with, your child will feel better having items that comfort them and are familiar from home.  If your child is anything like mine it's a ukulele or a drum :)

Listen and Watch your child

Many of our kids have trouble expressing their thoughts and feelings so be their advocate.  Watch for signs of pain or fear and using a calming voice and touch to help relieve their anxiety and fears.  Katie was abnormally withdrawn and quiet during her hospital visit.  She was quiet but based on her behaviors I knew when she was frightened or hurting.  I'd give her an opportunity to speak for herself but eventually would translate her nonverbal cues for the nurses and doctors.  You know your child better than anyone so it's important to be with them the entire time and speak for them when they can't speak for themselves.  If your child is older, you can coach them to speak for themselves.  Many of the special needs high school students I work with have trouble with this.  It makes a great IEP goal that can benefit them for a lifetime.

Seek support

No matter what you are facing, building a community of support will always make it easier.  If you keep the procedures a secret you are putting a lot of pressure on yourself to carry the weight.  I have found that throughout my experiences with Katie, the more I share with others, the more my community surprises me with encouragement and help.  If sharing makes you uncomfortable, start small with your partner, trusted friends and family.  I have found that talking to my child's teachers and therapists have been very beneficial.  They are often experts in these situations and a source of great advice, encouragement and resources.  They also spend a lot of time with your child so they can watch for signs of anxiety and help them in times of need.  Another wonderful resource are the facebook support groups.  Finding a closed group gives you opportunity to voice concerns, ask for prayers or encouragement and talk to people who are wearing your shoes.  As the years have gone by I'm more and more open with our experiences and find that sharing provides me with people resources, professional resources and a phone filled with encouraging messages.  Whatever level of support you seek, don't enter a stressful situation alone.  It's very liberating to ask for help and gratefully take on the support.

WS support page- affiliated with the Williams Syndrome Association
Williams syndrome Hope support group
WS Moms in prayer

Other sources that helped me prepare for medical procedures:

Friendship circle blog for special needs parents

Child life specialists

Child life specialist services at St. Louis Children's Hospital

Treating fears and phobias by Dr. Pober the Replay approach to alleviating anxiety during medical exams.

If you have any other approaches to help your child understand their medical procedure, feel free to share below in the comments! 

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.

Placement:

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.

Reporting

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.

New resources for you!

I just wanted to let you all know of a new resource that is available through St. Louis Children's Hospital!  Childrens has a Williams syndrome clinic that is fabulous (I highly encourage making a trip to see them).  I had the opportunity to work with the team there in May to write a series of new resources for WS families over various topics.  I personally wrote the parent perspective brochure and then co-authored the school brochure.  I also collaborated on the topics on the informational brochure.  Anyhow, I think they all have a fabulous overview for parents on various topics of concern.  I especially like the hypercalcemia and diet ones.  I wish I had those as a new parent because the colic was the hardest part of Katie's early years.

Here is a screen shot of the topics and you can find the link below. 

St. Louis Children's Hospital Williams Syndrome Center Resources Page

On a personal note, I'm very thankful for all the support you have given my blog and education efforts!  2014 has been nothing but amazing and I hope to provide you with the most current information possible in the future!

Back to School Tips for Teachers

Just this week I walked my daughter into her Kindergarten classroom to meet her new teacher.  This time of year brings me joy mixed with fear... definitely bittersweet.  I know Katie will thrive in her new school with her new team of teachers, therapists and aides, but part of me always worries about her.  I'm sure you can relate.  So, I challenge you to ask yourself- what can you do about that?  I hope your answer is the same as mine...I advocate for her.

In my own classroom I typically have 20+ students with IEPs and among them I've had very few parents reach out to me before the beginning of the school year.  But when they do, I immediately have an elevated level of respect and ambition to go out of my way to help them achieve their goals and needs!  Normally at the start of a new school year, it takes me time to get to know my students and identify their needs.  It takes me even longer to find the best solution to meet their needs.  Why not, as a parent who knows what our children need, help accelerate that by reaching out to teachers and giving them a toolkit of research based accommodations specific to your child?  By contacting your child's teacher you can share those resources so they can start the year with strategies and plans to help your child succeed from day one.  So, in this post, I'm sharing my WS toolkit with you.

In addition to the toolkit, I gave my daughter's teacher the bio I made called "All about Katie".  I used the bio last spring at her annual IEP.  It includes her picture, nickname, strengths, weaknesses, concerns and family goals.  I think that we often share these at IEP meetings but forget regular ed. teachers often don't get to see those.  They usually only receive a copy of the legal IEP at the beginning of the school year. 

A simple email establishing positive communication with your child's teachers will create a smoother transition to their new classroom.  Approach your new teacher with an open mind and be cognizant that they are extremely busy and stressed this time of year.  When I sent these materials I was mindful of how I worded my email to show that I respected their time and dedication to their students.  I kept it short explaining that I wanted to help them by providing resources that could act as an easy guide to help them solve problems that may come up as they get to know Katie and her needs.  They can also use them as a way to be proactive in her learning.  For example, it makes a teacher's job easier if they know if a child needs preferential seating or an audio book in advance so it can be available on day one.  Plus, opening up that communication breaks the ice and shows them that you have high expectations but that you are also part of the team and want to work with them in a collaborative fashion.

Below you will find my newest infographics that go along with topics I presented at the convention on visual-spatial issues followed by a collection of educational strategies that I learned about this summer.  Also I included a quick chart showing common behavioral challenges and social strategies that are common in children with WS. Following the infographic, you can find links to my other infographics and blog posts that are education centered and WSA resources that would benefit both a regular education and special education teacher.

I wish you and your children the best of luck in the new school year!  

 

Links to other infographics and resources I shared with my child's new classroom teachers:

Understanding speech development in children with WS

Teaching Strategies specific to WS

Teaching math to a child with WS

 WSA's Quick facts for teachers

If you find any of these infographics difficult to print, feel free to email me at mooniersarah@yahoo.com and I'll send you a pdf version.

2014 WSA Convention Questions Answered Part 2- Radial-ulnar synostosis

This is the second of my series of blog posts in response to questions presented to me at the 2014 Williams Syndrome Association National Convention.  See Q1 here.

Q2:  Is Radio-ulnar synostosis related to WS?

 One of the clinical symptoms related to WS is radio-ulnar synostosis or an issue where the radius and ulna are fused in a person's lower arm(s).  A typical forearm is designed in a way to allow the hand to maneuver in a variety of ways in order to manipulate objects in the hand.  When you extend your arm out with the palm facing downward (pronation) and then twist your palm to face upwards (supination), the bones in the lower arm direct that motion. 

In the pictures above, the radius is highlighted on the left drawing and the ulna is highlighted in the right drawing.

The lower arm is made up of two bones, the ulna and the radius.  The ulna is the bone that makes up the elbow.  Touch your elbow, you are touching a large protrusion on the superior portion of the ulna,  called the trochlea.  The ulna also articulates or creates a joint at the outer most edge of the wrist but in a much less pronounced way.  The second bone of the lower arm is the radius.  The radius articulates or connects to the majority of the bones in the wrist and extends to the elbow where it ends with a small concave circular notch that allows it to turn.  The radius is named for this motion.  Place your hand on your ulna (elbow) and follow that bone down the outside of your arm.  Now twist your palm up and down and notice that bone moves very little.  The other bone, the radius, moves quite a lot!  The radius is on the inside of the arm and it rotates around the ulna.  Watch this short youtube video to see an "insider's" view of how these bones twist the hand.

Now, imagine the radius and ulna bones are connected.  Would you still be able to twist your palm up and down?  No!  This is what happens during radial-ulnar synostosis or the fusion of the radius and ulna.  It affects 26% of individuals with WS.  My daughter has this in her right arm and it restricts the amount of motion and actions she can do with her right hand. 

 In the photos above, the left is an x-ray view of a typical bone arrangement in the elbow.  This is in supination position (palm rotated upwards).  The photo on the right is one of an individual with radial-ulnar synostosis.  Their radius and ulna are fused at the elbow making it impossible for them to rotate their lower arm.

 

 

 If your child has radial-ulnar synostosis, there isn't much you can do, medically, to treat it.  Even if the bones were surgically separated, they will not have the same bone structure, vascular supply and ligament/muscle attachment that would allow the bones to rotate properly.  You would be hard pressed to find a surgeon to do this type of treatment unless the fusion very severely limits any use of the arm.

The best way to handle this condition is to modify surroundings and teach the affected individual adaptations they can use to manipulate objects.  You may often find that they have a harder time manipulating small objects and holding writing utensils, such as pencils and crayons.  My daughter shows preference in her left hand for writing but that wasn't always the case.  She often manipulates items with her right and then will switch to the left.  This may be her way of adapting to her environment since she has more movement in the left than her fused right arm.  Many find that being ambidextrous out of necessity is the case for those with radial-ulnar synostosis.  Other actions that may be difficult if they have a  fused arm includes:

• holding spoons/forks during feeding
• manipulating buttons, belts and zippers
• sports that require wrist rotation such as catching a ball
• turning a doorknob
• handwriting
• manipulating coins and other small objects
• pouring liquids
• playing instruments such as guitar that requires wrist manipulation

This website has some very interesting stories about the challenges and accommodations that come with this condition in the comments section.  The commenters are individuals who have lived with radioulnar synostosis.  *Note, this condition exists outside the world of WS so please don't assume the commentators have Williams syndrome.  Check it out here.

Coupled with the visuospatial issues and motor control that individuals with WS have, the tasks listed above can be even more difficult. You will find that if your child has radioulnar synostosis, they will adapt on their own but there are many ways you can help.  For example, you can chose clothing that doesn't require buttons or replace knobs on doors with handles.  There are also many adaptive technology apps that are available to help your child with academics and self help skills.   This was a major topic of interest at the convention.  To access the WSA's list of useful apps visit the website here.  

If you have specific ways you have helped your loved one or students adapt to radioulnar synostosis, I'd love for you to share.  Please feel free to leave your experiences with this in the comments section of the blog or on the WS support group thread!

Source:
Radio- ulnar synostosis and its occurance in WS; 1991 *Note this was published prior to the use of FISH testing for WS diagnosis so information is clinical.

2014 WSA National Convention Questions Answered Part 1- Inheritance

Just one week ago, we completed the Williams Syndrome Association's National convention.  The experience was very different for me in comparison to my first convention in 2010.  At the 2010 convention my daughter was newly diagnosed, I was an overwhelmed and scared parent.  Fast forward to last week and I was in company with the experts, presenting and answering questions.  It was extremely humbling, overall heartwarming and one of the most rewarding experiences of my life.  This blog was just a little idea I had that spawned from learning about WS in my daughter's first year.  I'm eternally grateful to the world of social networking, Internet and supportive organizations like the WSA to literally change my life and others by increasing awareness and education to the parents and community.

During the convention, I spoke about sensory motor pathways and the genetics of WS.  I plan to have a few new posts that share the information I presented at the convention in the near future.  Look for those and others that have been requested (such as urinary and kidney issues in WS and sleep).

I was busy keeping notes of questions that ventured my way throughout the week.  Since many questions we have are on other's minds, I thought I'd answer them in a series of blog posts.  I'll post info as I learn them :) 

Q1:  Is the likelihood of a WS parent having a child without WS really 50%?

This question came up during the genetics session.  The reason behind this is that some families are skeptical that there really is a 50% chance of their child with WS eventually having a typical offspring.  We rarely hear of WS adults with children and those we do hear of often have children with WS.  While I don't know of nor have actual records of parents who have Williams syndrome and have typical children, all the literature says that the likelihood is 50%.


This is because of the process of meiosis.  When a person creates eggs or sperm their cells go through a process called meiosis where they duplicate their chromosomes, shuffle the genes during crossing over and then distribute them into two groups and divide.  In the second half of this process, they divide again to create two unique cells.  The result is four unique gametes each containing half of the parent's chromosomes.

So, if a person with WS divides their chromosomes in half, one half of them will contain the deleted portion and one half would contain the full genetic sequence.  From this point, we call the 50% the probability of inheritance but in reality, it's all chance.  If you flip a coin a couple of times is it likely you'll get heads both times?  Yes!  So it's fair to say that a person with WS could potentially have children who all have WS.  Now consider the full genetic potential of one person.  In her lifetime, one female creates upwards of 6 million eggs before she is born and a male can produce nearly 525 billion sperm!  So if you flip a coin 6 million or 525 billion times guess what the likelihood of getting heads?  50%.  That explains why you might see families with parents who have WS and their children all have WS.  It's the game of statistics.

I'm unaware of studies that are following data on this topic but with the improvement of the WS registry and parents asking for this information I could see this information being available in the future.

Learn more about inheritance and the basics of genetics and WS here.

If you have never experienced a National convention for WS, I highly recommend you try for the Ohio convention in 2016.  I found many outlets for financial support and made the trip affordable for my family.  The wealth of information you gain and the networking you can participate in is worth every cent.  In the meantime, check out www.williams-syndrome.org to find audio recordings of the convention sessions for sale.

Future blog topic requests that came my way during the convention:
Urinary and kidney issues in WS
Improve the gene list and functions
Anxiety, obsessions and meltdowns 
Causes of sleep issues in WS
Teaching social skills and friendly conversation

Have any other requests or more info on this blog post?  Leave a comment.  I'd love to have powerful dialog occur on these posts from parents like you.  Stay tuned for more Convention Questions Answered within the next few days!

See the answer to question 2:  radioulnar synostosis here.

Teaching Strategies Guide for Educators

Spring marks the beginning of many annual IEP meetings including my own Katie's transition to Kindergarten!  This time of year can be stressful for many families, so to prepare, I've created an infographic you can print out and share with your IEP team to help identify research-based best practices and appropriate accommodations for kids with WS.  Feel free to download or save this and print as many as you'd like.  I hope it can help facilitate positive conversations about your child's needs... and remember, every child is an individual so some of these strategies will be effective and others will not.  You, as the parent, know your child the best so be an advocate and vocalize what you know works!  All the information on the infographic is compiled from the educator guides at www.williams-syndrome.org.  Best of luck!