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, July 6, 2016

Understanding the Power of the Parent Advocate- 2016 WSA National convention speech

Welcome everyone!  Thank you for coming to my session on Understanding the Power of the parent advocate.  My name is Sarah Moonier and like you I am a parent of a child with Williams syndrome.  This presentation stems from my experiences navigating through Katie’s ups and downs and the strategies I’ve learned in my professional life that have given me a unique perspective in both the doctor’s office and at the IEP table.

So my story started in a room such as this, at the St. Louis national convention.  My daughter was diagnosed at 5 months and we were lucky to discover that the convention was in our home town 2 months later.  I had no idea what to expect but it was an experience of many mixed emotions as you all know especially since I was still in a state of shock over it all.  At the St. Louis convention, we attended as many medical sessions as we could since those were the primary issues we were experiencing at the time.  While I was there I became very cognizant of the community’s need for straight forward explanations of their kid’s challenges.  I saw high emotions and some speakers who struggled to give parents information that was too scientific.  This planted an idea in my head that I could provide that sort of resource.  By day I’m a human anatomy teacher and I have a talent of explaining very difficult material in a way that people can understand so I knew I could do that for this community.  So that’s how my blog was born.

Over the 6 years that my blog has existed it has morphed from purely medical related advice to a lot of educational advice.  My blog posts tend to evolve with the issues that my family tackles and I’ve learned that the knowledge and resources that I create have opened many modes of communication for my daughter’s medical and educational professionals.  It’s really changed the relationships that I have with her care team so that’s what I want to share with you today.

My goal in this session today is to share with you my advocacy strategy.  Now, it’s based on my experiences so it’s not a one size fits all solution of course.  Every school or hospital has different resources or procedures BUT I have found this form of advocacy to be very successful and hope you will too.  So this presentation will be delivered in two parts.  First, as an advocate you have to become an expert in your child.  You know your child better than anyone so you are already an expert in that regard but knowing the whole profile and having access to professional articles and tools will help you build valuable resources for your child’s team, in turn elevating your role as a participant in those IEP meetings.  The second phase then is sharing those resources with the team.  Having been on both sides of an IEP table, I witnessed the whole realm of emotions that come with them but I’ve also observed the social game and have a unique perspective on how to navigate that. 

So the beginning is what you are here at the convention to do and that is educate yourself.  We’re going to focus today on the nervous system because the issues related to WS that are core problems with learning are all situated around the nervous system.  The biggest take away in this portion is that isolated issues are a myth.  You may see an ophthalmologist for vision and a speech therapist for language and a PT for muscles and special educators for reading and math but all of those issues are not isolated.  They are all connected.  If we can understand that and know that big picture of how they are all related, you can then begin to treat the whole child.  Now your therapists and doctors and educators don’t usually all communicate with one another so that becomes your role.  The parent is the communication pipeline between all these experts so the more you fully understand that big picture, the better your conversations with those professionals linking them and treating your child to the fullest extent will fall into place.  So here we go…

In order to understand that big picture to treat your whole child you should start with the basic function of the nervous system.  When people think of the nervous system they immediately think of the brain but our nervous system is much more complex than that.  It actually begins with the sensory organs which monitor our environment and send messages about stimuli in our environment so we can navigate it and make decisions that keep us safe and functional.  You can probably think of a dozen issues related to our kids’ sensory organs such as vision, hearing, texture issues, feeding issues, attention issues… we’ll focus on a couple of these but I want you to understand that many of your child’s behaviors are related to this portion of the nervous pathway- gathering that information.  The issues can also extend to how that input is interpreted.  This is a fundamental process that requires communication across the brain where we interpret the senses and then decide on a response.  WS affects a few of basic pathways in the brain that cause our kids to interpret their environment and create a motor output in an atypical way. Understanding this allows us to come up with creative and effective ways to help them in the classroom.  The final function is the response from the muscles.  Our kids often show muscle tone issues and movement issues and most of those muscle issues are actually caused by ineffective communication of the nervous system and those muscles causing them to become overly weak or overly tense.  So this is what we’ll do for the next half hour or so, we’ll work through these three functions and look at ways it affects a kid with WS and how by looking at the big picture, we can help many issues at once.

So let’s begin with the senses.  One common issue for 50% of kids with WS is hyperopia or far sightedness.  In hyperopia, the shape of the eye causes the light to focus behind the eye rather than hit a clear focused stream of light on the receptors of the retina.  This causes poor, blurry vision.


Hyperopia is a condition caused by either a flattened cornea which is the window to the eye or due to a physically shorter eyeball and can easily be corrected with glasses or contacts.  So you might notice your child squinting or like my Katie on the right there, we noticed that she hated tummy time as an infant and that she tilted her head far backwards to see things.  That was our first clue and the tummy time ended up because she couldn’t see anything!  She couldn’t pick up her head and tilt it backwards to see the object in front of her and once we got her to an ophthalmologist she started tolerating it better and developing faster.  If your child has poor eyesight it will negatively affect their development because it limits the amount of sensory input the brain receives in order to do the learning.  So, it’s important to see a pediatric ophthalmologist for testing.
The second sensory issue we’re going to explore is hearing.  61% of our children have frequent middle ear infections, called otitis media.  You can see in the picture there, the middle ear is the area right behind the eardrum where the ossicles or ear bones are.  The ossicles vibrate when sound hits the ear drum and transfers that motion to the cochlea where the sensory receptors are.  Frequent ear infections can cause delays in learning and difficulty with attention.  Interestingly, our kids tend to produce excess ear wax or have unusually narrow ear canals.  My daughter’s ear canals are tilted upwards into her middle ear which makes it difficult for the body to naturally move that wax out.  It builds up and affects her hearing so we use ear drops, see an ear nose and throat doctor to remove it and get a yearly pediatric audiologist assessment to make sure her hearing is functioning properly since all those issues can directly affect her learning.


Another sensory issue that we are all familiar with that affects 90% of those with WS throughout their life is hyperacusis.  For my daughter her triggers are the leaf blowers, vacuums and motorcycles but every kid has their own set of sound triggers that inflicts terror and pain.  Scientists aren’t positive about what causes this issue but there are three different theories. 


 The first theory is that the sound is actually perceived as motion.  The inner ear has two regions, the vestibular apparatus made up of the semicircular canals which monitor movement of the body and the cochlea which picks up the sound.  The theory is that the vestibular semicircular canals confuse the sound as movement, amplifying the sensory input to the brain.

 The second theory has to do with muscle tone.  Think back to a time when you went to a loud concert or to a pep rally at school.  When you leave the venue, you feel like sound is muffled and you speak a little too loud to people because you can’t hear yourself.  But after a while the sound returns to normal.  This demonstrates the function of a tiny muscle in your middle ear called the tensor tympanii whose job is to contract around the eardrum to dampen very loud sounds and protect your hearing.  The theory is that low tone in this muscle causes it to fail to adjust to loud sounds causing intense sound reception.

The third and final theory has to do with neurotransmitters.  Neurotransmitters are chemicals that allow one neuron or nerve cell to communicate with another.  We have many of these chemicals in our body.  Some neurotransmitters send messages and others regulate the intensity of that message and block or dampen signals.  The theory is that the cochlea, the area that senses sound has low serotonin which is that dampening chemical.  Due to less regulation, the nerve fires more intensely causing the brain to interpret louder more intense sound.

There is no real way to stop hyperacusis from happening but we can use behavioral approaches to anticipate issues or give our kids coping skills on how to accommodate their environment.  Things such as anticipating the sound and avoiding it such as bringing headphones to the fireworks display or watching them from inside a room.  Gradual conditioning is also very effective.  Katie was very afraid of animated toys that move and make sounds.  So we started with just having one in the room turned off so that she got used to the toy.  Then we’d watch youtube videos of them with the sound off so she became used to the motion.  We’d play with it when she was out of the room so she was used to the sound but at a lower intensity and then eventually exposed her to it.  She managed to grow out of it and moved onto other scary sounds like hair dryers and vacuums!

So again, these sensory function in our body are all about gathering information about our surroundings so we can interpret them and come up with a response so since our kids have these and other atypical sensory receptions, it can affect all the steps further down the nervous system pathway.  Therefore, as we look at the next two functions we’ll come back to these sensory issues and see how they can complicate other issues related to physical activity and education and we can come up with strategies to think of all these steps as we go to give our kids a leg up.

So our next step along the nervous pathway is the brain where we’ll take all this sensory information and interpret our surroundings so we can decide on a proper response.  This is called integration or association because we’ll take that information and associate it with memories, experiences and put all that input together like a puzzle to make sense of what is happening around us.  The brain accomplishes this with two major functional areas- primary areas and association areas.  There are primary and association areas for all our sensory and motor functions and they are kind of like depot stops along that pathway that put two and two together.  The primary areas are our basic instincts they are where we identify the stimulus as a bright vs dim light, the wavelength the color the amplitude of the sound the pitch the frequency… just basic awareness.  The association areas are where we label that as the sun and associate it with feelings, experiences and prior knowledge. 

Once we’ve labelled and figured out our surrounds we have two major streams of information that move that nervous impulses together toward areas of the brain that will create a response.  The dorsal stream or where stream is a nervous pathway that moves upwards towards the motor areas of the brain that control movement.  This stream is the spatial stream where we make sense of where things are relative to one another and it tends to be a relative weak area for those with WS. 


The ventral stream moves laterally towards the temporal lobe where our language centers are.  This stream of information illicit a verbal response and is highly associated with speech, music and facial recognition… a strength for our kids.  You can see where I’m going here, right?

So, when thinking about WS.  We can use our scientific knowledge of how our kids think and translate that into ways we can help them overcome their challenges.  We know that kids with WS have visuo-spatial difficulties and this is because the where or dorsal stream has low amounts of gray matter.  The gray matter is the area of the brain where we make our decisions and do the thinking that makes us each unique.  Since there is less development here it causes somewhat of a traffic jam of information- they just can’t process it as effectively as the typical person, resulting in slower activation and decision making. 

Since there are slower neural pathways in this dorsal region our kids tend to have these difficulties- poor dexterity, slow speeds, difficulty reacting to visual information and trouble manipulating fine motor skills.  If you’ve ever watched your child try to manipulate a coin into a slot, you’ll understand what I mean.  It took Katie a very long time to accomplish this skill and still now that she can, she still takes quite a long time to do it and will attempt a variety of directions before she can.  It also translates into self-help issues.  That same skill is used to manipulate buttons and zippers or tying shoes for example.  But knowing these issues you can also create solutions.  Until they can handle buttons, use alternatives.  Talk to teachers about using multiple intelligences to teach them these spatial skills by tapping into those stronger skills on the ventral pathways by using sound, music and verbal cues.


In addition to the movement difficulties the integration portion of planning those movements- called motor planning can be difficult.  Also called apraxia, this is all about predicting and planning how to move based on senses.  My daughter just recently underwent surgery to lengthen her heel cords and the PT during her assessment asks her to push against her hand or resist her from pushing against her foot in order to assess her strength.  You can see my daughter’s wheels turning trying to figure out what she wants her to do.  So, we’ve approached it with a variety of accommodations.  We sing silly songs for example, when they want my daughter to move her feet medially to put toes together we play a game and have her “kiss” her toes and then when she wants them to move them outwards we play “blah”.  When she does bridges we sing London bridges or when she does clam shells we sing the shark song.  All of these little modifications help her understand how we want her to move, keeps her engaged in the activity and improves her memory of the muscle movement during practice at home or at later sessions.  I’ve found that when you suggest to people this approach they look at me like I’m crazy but I just belt out my song all out of tune and go with it.  Once they see that it works they pick it up and go with it.  You just have to break the ice for them J


Now when you combine the two difficulties- moving and space and planning on how that’s going to work, you’ll find that nearly all our kids have difficulty with this.  It’s a hallmark issue with WS and one that will affect them in so many ways so I feel it’s an important characteristic to discuss with your child’s therapists and teachers so they understand why your child will have difficulty in PE or with writing.  It’s part of their biology.  Here I have another example with throwing.  My daughter has been working on throwing and catching as a PT goal for about 4 years now and I don’t anticipate that ever changing.  She has trouble seeing that ball coming to her, a sensory issue, she has to process that in her slower where/dorsal pathway, predict where the ball will land with her motor planning and then activate the muscles she needs to stand in the right place and hold her hands out to catch.  She has a very slow response which typically results in her moving her hands out to catch the ball long after it has already whizzed past her.  So ways we can help?  Start with slower moving objects.  We practice with a balloon.  It moves much more slowly so it gives her time to process.  My daughter’s PT also works on her visual tracking to help with this skill.  There is a website called Eye can learn that has simple exercises you can use at home to help your child with visual tracking.

The other way to overcome these motor deficits is to tap into the strengths.  Neurologists have long been fascinated with the WS brain because we have those unique challenges paired with unique strengths of verbal ability.  Since the where stream has a slow “two lane pathway”, the brain builds up a highway system in the stream that allows the information to move faster resulting in a strong verbal ventral stream.  This what stream gives our kids a strong and sometimes unique pathway and a good working memory that is in tune with facial recognition.  It is also activated by music explaining our kid’s affinity to music.


The reason the verbal stream is strong has to do with the anatomy of the neurons there. Brain scan show that there are enlarged and more active regions in this area of the brain.  There is greater blood flow to the hippocampus resulting in work memory strengths and there is more gray area in the auditory regions the brain, making auditory learning a strength for our kids. 

So because our children’s brains put more stock in this pathway we can see some of those strengths and use them to overcome the disadvantages they experience in that where stream.  Our kids tend to have strong memory retrieval and this stream is where our auditory areas are found making them great auditory learners.  When they are facing tasks that require body movement from anything to learning their letters, school work to navigating through a maze they should combine the learning with auditory information.  This will activate more areas of their brain and keep them more engaged in the activity. 


Our kids learn differently that the typical child because of the differences in brain matter.  Very young children with WS have delay in language development partly because they learning and develop differently than their peers.  Usually teachers search for prior knowledge to build upon but many kids with WS rely more on their working verbal memory to access learning so it’s important to begin lessons or supplement lessons with listening skills.  Request books on audio, use websites that have a read aloud mode… this explains why so many of our kids are infatuated with youtube.  They respond to the sounds and stories they hear there and process that sound differently like we saw in the hyperacusis section. 


There are some situations where language requires the dorsal where stream and this is where language becomes difficult for our kids.  Terms that have to do with opposites and space, size and color, directions they all require a conceptual understanding of where something is classified in relation to another concept.  Many of the speech therapy goals of Katie’s are centered around understanding these concepts.


So knowing the brain science, there are strategies you can share with care givers or use at home to help your children tap into those verbal strengths to overcome their spatial weaknesses.  One example, you can teach verbal reasoning.  When I was in elementary school my mom used to coach us before the big game with visualization techniques of making the goal or imagining the muscle movement to dive into the pool.  When you watch the Olympics you’ll see the gymnasts doing it before a vault visualizing the movements they’ll take.  This is a strategy you can teach your children when working on spatial tasks.  Talk them through the process and help them accomplish that motor planning they have trouble doing.  By hearing the plan they’ll have more success and gives them the skill where they can talk through it themselves with practice to plan.  The same strategy can work with navigation.  Say your child has trouble following instructions to do a task like centers.  The teacher can verbalize the instructions before the activity or even use assistive technology on frequent tasks that help kids follow multi step directions or navigate around their school.  Provide the use of technology such as gps and map apps for older kids and provide visual task reminders, signs or symbols to find locations.  One problem young kids have is learning to draw shapes and later how to put those shapes together to make a picture.  For example, you’ve probably seen that classic picture of a bike that was drawn by a person with WS where their bike looked like a disassembled bike instead.  Drawing is a very spatial task so you can help your child by talking them through and drawing faces to learn shapes.  My daughter started with drawing Mat man which is a little person drawn with each of the shapes- circle, rectangle, triangle, square.  By connecting the shapes to draw a person, you are tapping into the what stream in order to accomplish a where task, making our kids more successful at it.

So we’ve discussed the sensory input and the processing, now we move onto the final stage of the nervous pathway which is how we respond to the environment.  In this pathway, the brain uses regions within areas of the cerebellum to coordinated muscle movement in response.  This subconscious control of muscles keeps our muscles in the proper tone or a contracted state that prepares it for a muscular response.  It adjusts core muscles for balance and small muscles that contract to steady a movement and improve fluidity.  It’s also involved in motor planning and skilled execution such as typing and driving… many of the tasks that our kids have difficulty with.


One of these issues is related to balance.  Many kids with WS have awkward gait and trouble moving their body in a fluid coordinated motion.  This is due to an enlarged region of the cerebellum which is used for muscle coordination.  This area disrupts the body’s ability to connect their senses to memory and control muscles in response to those senses.  This brings us back to those original sensory issues we discussed at the beginning.  We’ll start with control of the eye and in this section we’re going to participate in a little experiment.  I’d like you to choose something on your body to adjust a bit.  Put a ring on a different finger, roll your socks a strange way, tie your hair back tighter.  Keep it that way for a bit while explain the eye… you’ll see why in a minute!


So when we’ve received that visual information and made what sense that we could of it our brain wants to send information back to the muscles of the eye in order to gain new perspective.  The message travels down the motor pathways of the oculomotor nerve and to the muscles that surround our eye to move our eye back and forth.  That movement is coordinated between the two eye balls to gain depth perception.  It also causes movement within the eye in muscles that adjust the lens of the eye to better focus light and get a clearer image.


In some children with WS especially those with hyperopia, the kids have trouble with that coordination effort resulting in estropia where the eyes aren’t perfectly aligned and one turns in or out slightly.  This is a picture of my daughter when we first noticed her estropia.  As a result, the two eyes are no longer looking at the same object and they get double images which further confuses the brain.  If you notice this, it’s important to see an ophthalmologist immediately because if you don’t, the brain will accommodate to its surrounds which leads to bigger issues.


So if estropia persists the brain must chose only one of those images to focus on since the input is so confusing, so it uses sensory accommodation and begins to ignore that weaker eye’s input.  It’s just like the little experiment we just did.  You moved your ring to a new finger.  At first it most likely made you uncomfortable.  The feeling was out of the ordinary and your body took note of it but after a while your body decided that it wasn’t worth your attention and now it probably doesn’t bother you.  That’s what your brain does with the weak eye information.  The brain decides its better off without the info so it turns off the input or filters it essentially making the person accomodatively blind in the weak eye!  This can cause the loss of depth perception and overtime can become irreversible if not treated.

There are essentially two types of estropia.  This is my daughter’s estropia a few months after we noticed it.  You can see how much worse the weaker eye is from the original photo.  In this stage, her brain began to lose interest in that sensory information and the motor control fails causing the eye to fall in.  This can become complicated by low muscle tone or hypotonia in the muscles.  This means the nervous system fails to keep the muscle on alert in a slightly contracted state in order to improve and be ready for contraction.  In order to repair this, the ophthalmologist will put the children on a patching regimen where they cover the strong eye in order to force the brain to pay attention to the weak eye signal and keep it functional.  For some children, this will be enough to improve the eye strength.  Some kids will also get glasses.  Often if the child has hypotonia and far sightedness together, the weak muscle tires and causes the eye to fatigue.  By having glasses, the muscle is not worked as hard to try and focus the image improving muscle stamina.

There are some situations where patching alone is not enough.  My Katie had to have surgery on her eye muscles three times.  In surgery, the surgeon reattaches the hypotonic muscle in a different place on the eye in order to shorten it and return alignment.  It’s an imprecise surgery so it does have a high likelihood that a repeat surgery is needed but the recovery is very fast and its’ an outpatient procedure.  My daughter on her final procedure had a botox injection where the botox temporarily paralyzes the muscle allowing it to lengthen and stretch and then when nervous control is restored it is adjusted to the proper alignment.  This is was enough paired with patching and the glasses to correct my daughter’s eye alignment and her vision is restored.

This muscle problem can extend to other motor issues.  Next we’ll look at speech.  In order to form words, there are many muscles that the body must learn to manipulate and contract in the proper ways to form intelligible words.  The nervous system must coordinate the muscles, contract them in the right way, move them in the proper range of motion, control the speed of the lips and the tongue all independent of one another.  This can be a large task!  This is one reason why our children have speech delays and often fatigue after a while when speaking.  Katie is working up her endurance but she’ll often get some words or sentences out and then revert to babble.  Her muscles and motor planning just can’t keep up with her thoughts of what she wants to say.  She does the same with music although she has a bigger endurance when she sings, she often begins singing her own version of the song because it’s a big task to coordinate those muscles and process what to say next in a quick enough manner.


So because our kids have the stronger what or ventral stream, language eventually becomes a strength but our kids need speech and language therapy in order to learn proper motor output.  Many of the language strengths our kids have often cover up these weaknesses, especially as they age so it’s not uncommon for them to lose some of their minutes to speech therapy but there are areas that they still need help on even through adolescence.  One of those is pragmatics- the art of conversation where they listen to another person and go back and forth with information.  Our kids tend to want to talk about what interests them making friendships more difficult to maintain.  With continued speech therapy, pragmatics can be learned and our kids can have better social engagements, which they really crave and prioritize.

More with motor.  These are pictures of my Katie at a very young age and we are just now seeing the issues related to them.  Folding in half or siting in a W are a result of the low muscle tone that our kids tend to have and they can turn into big problems.

When our children are young especially they have hypotonia which is related to the motor planning.  Weak muscles are less of a muscle issue and more of a nervous system issue.  They are due to misinterpretation of the senses and poor communication between the nerve and the muscle creating relaxed stretched muscles with higher movement.  This creates delays in all things motor such as speech, feeding and movement.  Muscles, like the eyes are also sensory organs.  Many people don’t realize this but we have tiny little receptors in the muscle that send back information about where a muscle is contracted and where we are in space. 

After time, the brain begins to crave the sensory information from the muscle that it’s missing.  So, it uses muscles outside the core in the peripheral areas of the body such as the arm and mainly the legs in order to gain that sensory information from the proprioceptors.  Early signs of this are dragging your fingers against the wall or obstacles for balance and toe walking.  When we toe walk, more specific information is gathered from the balls and toes creating heightened awareness of balance and our surrounding environment.  It also activates the vestibular apparatus of the inner ear amplifying information about balance and helping us to gain more sensory info.

Toe walking can also be linking with visual issues.  Some children toe walk to gain information that they can’t gather with their vision.  With misaligned eyes, the body may get inaccurate sense of where they are in the environment as slight forward causing the body to want to lean forward in order to maintain balance which results in toe walking.  An ophthalmologist or optometrist can often check for this and use prisms to correct the issue.


This overall low tone can create big changes to the balance of muscle in the legs.  They become asymmetrical.  Muscles often work in pairs- when one muscle such as the calf is in a contracted state, the opposite muscle in the shin become relaxed.  So when we have high amounts of contraction in one muscle and overtime ignore the other, the muscles are unevenly built creating balance and coordination issues and can lead to joint issues. 

This imbalance to create a condition called contractures which are something that is common in about 50% of those with WS including my Katie pictured here.  Due to toe walking her Achilles tendon became short to the point that she couldn’t flatten her foot if she wanted to; reducing her range of motion.  As a result, she ended up requiring surgery; lots of stretching and increased amount of PT in order to increase range of motion and create better balance in her state of contractions.


So in the end, the muscle aspect of this pathway is where we see the end results of all the sensory and integration issues.  By understanding the full pathway, we can not only prevent some of the issues that could occur such as the contractures but we can better understand our children’s behaviors and provide sensory or integration accommodations to help them cope or to stop problems before they require surgical intervention.  For the entire pathway I might have a full team of medical and educational professionals treating my child with myself being the bridge between all of them in order to treat my child in full.


Which brings me to the final portion of my presentation- how you can use all this knowledge to become a better advocate.  Because of my background in anatomy and teaching, I’ve seen a different kind of perspective when it comes to advocating for your child.  I found that these are the three most important aspects of my conversations with doctors and educators and because of these conversations, I’ve formed unique relationships with the team and created more open lines of communication.  First, I use their language to discuss my child.  When you have conversations with a doctor, use scientific terms if you can comfortably.  They pick up on this and will offer up more information than they originally would.  The same goes with education.  If you use educational terms you can often gain more accommodations or better set the stage to get those resources, you want.  I have an infographic that I’ve created with some of the language and vocabulary used in this presentation that can help you in these conversations. 

Second you want to become a resource.  Offer things that the professionals are interested in to better prepare them for their job related to your child.  Finally, the key to open up lines of communication where you are a person who can share information will make you a valuable part of the team.

So ways you can accomplish this are to find professional articles which is what I write my blog posts based on.  The blog posts are for you to understand what they say and then at the base of the page I have links to resources used to find the info.  The professional articles listed there are great resources you can use to pass along the information.  I often print them and give them to therapists, teachers and medical doctors.  I just ask them if they’ve seen it and open up a conversation about how it sounds like Katie’s behaviors or related to the issues she has.  For example, when it was time for testing during Kindergarten I gave the school psychologist and speech therapist Dr. Mervis articles on testing and speech development in order to guide their choices. 

As parent your therapists and doctors and educators often will not communicate with each other.  You are the mediator so openly share the medical and school info with the teams so that everyone is on the same page. 

Especially for teachers, the infographics and WSA tear away sheets are wonderful.  Teachers are busy and have large caseloads so easy to read, practical information is more likely to be read and studied than long articles.


Another aspect of advocacy that I’ve become hyperaware of is maintaining open communication.  Sitting on both sides of the IEP table, I can see where communication breaks down between case managers and parents when emotion gets in the way.  It really is a social art to try and get what you want where tone and approach are so important.  You cannot just openly request or demand things like paras or assistive technology.  You have to think like a lawyer and show evidence, set the stage for what you want.  I’ve been able to get these resources and more for my daughter without ever requesting them.  I just make a case for it and the logical solution is to provide that resource and they have offered it.  I’m not guaranteeing success because every district and state is different, but its’ important to understand that work with your team should always be your first approach to an IEP. 

As a teacher I have heard countless conversations about parents who are unreasonable and I’ve found that the case managers and teachers, like most people, who feel threatened will disconnect from the child and become very defensive of their own decision making and job.  This is counteractive to your overall goal of getting what is right for your child so its’ so important to try as best as you can to remain emotionally neutral throughout the meeting.  I’m not saying you should walk around as a brown noser but you should treat the professionals with respect because you will in turn gain respect as well.  I make a point to thank them for their time, skills and sharing knowledge with me so that I can better understand them and the decisions they make but in return I’m also keeping them accountable by asking them to defend their choices in a respectful manner.  I also make it a point to work with them instead of against them.  When you offer valuable information and show your knowledge, they will see you in a different way- as a resource that can help them in their job rather than hinder.  When emotions get high or difficult one way, as a teacher, that I’ve learned to reduce the charge in the room is to keep the conversation child centered.  The child is why you are there but all too often people begin to think more about themselves if they feel threatened which is a natural response.  If you return to phrases such as can we review how this will help my child access the curriculum or how will this set my child up for success or how can we help my child overcome this obstacle, you remove yourself and them from the conversation and focus on what is important.

Some reasons why teachers and professionals are not open to resources you want is because they aren’t familiar or trained in them.  When you request things that are outside a teacher’s comfort zone they will often become inflexible.  I found this to be true with my child’s special education teacher when I mentioned assistive technology.  With encouragement and persistent requests and information she became open to the idea and it ended up really transforming her classroom by opening up the resource to many children including my own.  They say that in business you have to pressure or present your product on average of 5 times before someone will commit to the platform and I’ve found that in teaching this can be true as well.  As an advocate you can remain respectful but also be offensive in this manner by repeating requests and keeping open resources that point your teachers in the direction you want them to go.  Provide them with evidence and resources that help make it attainable and practical.


Just like in education, when you talk to medical professionals, the vocabulary that you use can open of lines of communication.  If you feel comfortable, use scientific vocabulary.  They will sense that you can handle more of the details and you will learn much more about your child’s condition and tips that can lead to better decision making.  You should also ask for medical reports from your doctors so that you can better share the information with teachers and therapists.  This will help them better understand your child’s condition and make better plans for treatment. 

The last portion, which can sometimes be the hardest, is to ask questions.  Be open about treatment and procedures with multiple practitioners because they often give you the best advice.  When my daughter was preparing for her surgery on her heel cords, I had a very eye opening conversation with her cardiologist explaining the studies on anesthesia and how to choose an anesthesiologist when you often think they are merely assigned.  He gave me advice on questions to ask them in order to gauge their understanding of coronary stenosis and anesthesia risk before undergoing the procedure and that I had the right to request different anesthesiologist if I didn’t feel confident in their knowledge of WS. 

Don’t rely on the internet for details.  Go there to learn more but then ask them about what you learn and its validity.  Show them articles you find especially if they are related to your child’s condition and are from reputable journals.  Ask about treatment options and why they aren’t recommending others.  They typically have good reasons why they chose what they chose and can defend those decisions and if they can’t find a second opinion!


As with medical professionals talk is important.  Establishing a relationship as soon as possible is ideal.  As soon as my daughter is placed with a teacher or therapist, I send them information about WS.  If you can get it to them before school begins you can tap into time they have to explore that without the pressures of the start of school prep work.  As a teacher, I always loved when parents reached out to me early and gave me tips on how to best engage my child.  It eliminates so many trial and error days in the classroom that would occur if I had to figure all that out on my own.  You’ll find that this open communication will often make the teacher’s life easier and in turn they will be more likely to adjust schedules, resources and transitions to accommodate your child because they have more power to do that before the year begins.


Finally, the tricky IEP meeting that stresses any parent out.  It is important to come prepared to this meeting.  The parent can arguably be the most important person in the room because no one else knows your child as well as you do.  I start by creating a skills, needs and growth sheet.  All IEPs will include a section on your child’s strengths, weaknesses and parent statement.  By taking the time to write al these down early you will not feel like you have to come up with them on the spot and you’ll have written documentations of your wishes that will go into the folder.  I often prepare these along with links or print outs of the professional articles and infographics and send them to the case manager about 2 weeks before the meeting.  They will be able to look this over, do the research and write better goals because like you, time to reflect and think of these things before the meeting will make them more throughout and developed. 

Another way I prepare for the IEP is that I become aware of what children are doing at my child’s grade level and I write those down on paper.  I reiterate over and over throughout the meeting that I want to find ways and shape my daughter’s goals around accessing age appropriate curriculum materials.  By knowing what that curriculum looks like you can check off skills as your case manager goes through the goals and then if there are missing skills you find important you can request to have them added.  If the professionals don’t feel they are developmentally appropriate, open up conversations asking them for evidence as to why and encourage them to find ways to make it accessible such as with technology, paraprofessionals etc.  I never outwardly ask for a para but by setting up the evidence to show it would be a solution and an area of need, you will more likely be offered it.  It should always be centered around your child’s needs not what the general population of WS children need.  I have the professional opinion that every child with WS is uniquely different.  Because special education is tailored toward your child you must be mindful of what is right for your child and aim for that.  You should be knowledgeable of the options and flexible to try new things.  If you show those traits your team often will as well and you will form a strong working relationship.  Finally show gratitude when your team is flexible, uses your resources and shows a desire to go above and beyond.  It will only make your relationship stronger for future problem solving and negotiations.

Resources to share with experts or use at home: