DIY Adaptive Summer Seating

Equipment for individuals with special healthcare needs have come a long way. The field is always evolving to higher levels of performance and patient friendly options, but the problem generally still exists that many items are bulky, heavy, and expensive.

A family I work with in early intervention is well equipped with equipment to ensure that their daily activities as a family are as easy as possible, including adaptive seating and mobility options for community outings, playtime, and daily routines like bathing and eating.

With spring finally deciding to show up around here, this family (like many) is busy planning more ways to enjoy time together outside. One area they identified as a challenge was helping their son to sit on their deck and at the park or beach. Yes, they are fortunate to have specialized strollers, but the reality is that for a quick trip, something light or something that doesn’t take up the whole trunk was desired.

Today during our session, for under $10, his mother and I created something that filled the need for his family. If you or someone you know could benefit from something similar, we are happy to share what we did and what we learned.

Supplies:

1 simple plastic chair ($5):

TIPS:

Fit to size for your child.

We preferred one with the bottom lower than the knee area (to prevent sliding).

Highly recommend a chair with slits to help with attaching supports.

2 Pool Noodles ($1 each).

Scissors to cut noodles.

Two bags of large zip ties ($1.87 each).

Plastic or wire cutters to trim zip ties once attached.

 

Assembly:

  1. We chose to start with the child in the chair and observe his posture. Where did he struggle to maintain neutral and upright positioning?
  2. With him in the seat, cut noodles to accommodate his size and weaker areas. For him this included: back of head, on each side of the trunk under arm pits to base of hips (vertically), on sides of lap from knees to hips (horizontally), a smaller piece on top of these horizontal pieces to support the elbows as needed (these were added after the photo shown above), and a small piece in between the legs as a pummel to prevent sliding.
  3. Attached noodles with zip ties by lacing through chair slits (note: we realized after the fact, but it would be recommended to have the fastener part of the tie on the backside of the chair to prevent rubbing/irritating the skin). 
  4. We attached a loose scarf of moms through slits and around his upper trunk, not as a firm support, but a light reminder for him to avoid slouching.

We were thrilled with the results and so was he! With an adaptive tray he could easily access his I-pad (used for vision work and communication) in his new “desk!” His mom and I were quickly able to identify many potential uses – kicking in the baby pool, outdoor movies, on the sidelines at siblings games, at grandma’s house!

We believe play keeps us all happy, healthy, and smart! When I can help adapt something simple to make joyful activities easier for families, it’s just a really good day.

 

 

 

COMMUNICATION FOR ALL – How AAC Helps Children Find Their Voice

This post was originally written for Child Guide Magazine. Check out the many resources Child Guide offers as well as this article and others HERE.

 

clairechase

What comes to your mind when you hear the word “communication”? Do you think of talking? That is what most people consider to be communication. But what if you don’t have a voice to talk? Or if when you talk no one can understand what you are saying? How do you communicate then?

 

Speech-language pathologists help those without an audible voice find their “voice” by introducing them to AAC. What is AAC? Augmentative and Alternative Communication (AAC) is just that; other ways, using high or low technology, to communicate. AAC includes something as simple as a head nod to something as high tech as a speech generating device.

 

The American Speech-Language and Hearing Association defines AAC as all forms of communications, other than oral speech, used to express thoughts, needs, wants and ideas. AAC can be aided or unaided. Unaided AAC is using body language, gestures and/or sign language to communicate. Aided AAC is when tools and/or equipment are used, such as pictures and speech devices.

 

Communication is a right of all people and it is the job of a Speech-Language Pathologist to help children access that right in the absence of the ability to speak. But how does one decide which AAC approach is best for the child? There are recommended criteria that typically have to be met for the child to be considered as an AAC candidate.

 

  1. Does the child understand cause and effect? Cause and effect is the foundation of communication; I do something and get something in return. Sometimes cause and effect can be taught using an AAC device.

 

  1. Manual dexterity and fine motor skills. To be able to access sign language as a means of communication the child must have the fine motor skills to perform two-handed signs. Also, to be able to push a button to activate a speech device, the child must be able to control the motor movement of the arm and hand. Tilt switches (a simple head tilt) and eye gaze systems exist to allow children with minimal controlled movement to access AAC.

 

  1. Motivation! The child has to be motivated to communicate to be successful with any type of communication option. A highly desirable reward just might motivate any child to use their AAC!

 

So what does AAC look like for real kids? How does their voice sound? Meet Claire and Ethan, two AAC user success stories!

 

Claire

Claire Elias, daughter of Mark and Melanie Elias of Frederick, Maryland, is an adorably sweet 4-year-old girl. Claire loves the color pink and hugging her stuffed animals. She loves to watch Minnie Mouse and Sophia the First and her best friend is her twin brother, Chase. Claire has an incredibly happy disposition and a smile that lights up a room. Claire uses AAC to express herself. At the age of 2 she began using an iPad with a communication app to request toys and answer yes/no questions. The fine motor movements necessary to operate the iPad proved to be a difficult for Claire. Now she uses a PODD (Pragmatic Organization Dynamic Display ) book to communicate. A PODD book is a picture system that allows Claire to use visual gaze to make requests, ask questions, comment, etc. Claire will be 5 in June and will attend Kindergarten next fall. Her PODD book goes with her everywhere, just like her voice.

 

 

Ethan

Ethan Judd, son of Christy and Jeff Judd of Inwood, WV, is a 6-year-old kindergartener at Bunker Hill Elementary. Ethan has an awesome sense of humor and a determined mindset. His favorite colors are green and orange and he loves, and often wins, playing UNO. Because of his tracheostomy, Ethan was unable to access his voice during his infant, toddler and preschool years. During this time Ethan used a combination of sign language and an iPad with a communication app. Since then Ethan has gained respiratory strength and now mostly relies on his voice to communicate. Sometimes he accompanies his speech with sign language to increase his intelligibility (the clarity of how he is understood). Ethan’s story is an example of how AAC bridged the gap for him until he was strong enough to vocalize. AAC gave Ethan a voice when his wasn’t available to him.

 

Claire and Ethan’s stories are just 2 of many, many AAC success stories. If you know a child who has yet to “find” their voice, contact an SLP close to you to help. Communication is a right of all individuals, no one should be denied!

 

Lacy Morise, M.S. CC/SLP, better known as Miss Lacy, is a Speech-Language Pathologist with the WVBTT and Loudoun County Schools. She is co-owner of Milestones & Miracles, LLC (www.milestonesandmiracles.com), a company dedicated to educating families about the importance of PLAY. She loves to use verbal and nonverbal language approaches to help kids access their right to communicate!

Making New Ways To Play In Dad’s Old Shop

My Dad is a plumber and a contractor. When I was a kid I loved playing in his shop. I used to stack wooden scraps, bang things together, and pretend copper pipe was my wedding band. (Princesses hang in tool shops too).

Today I got to be a bit of a kid in Dad’s shop again and it was so fun!

I have a few “go-to” gifts that I LOVE giving to my “therapy kids” when they turn 3 and are no longer eligible for my services. They are part “graduation” gift and part birthday gift. Every once in a while though, I have a kid who needs something that is specifically made just for them.

It’s nice having a handy Dad when you are a self employed early intervention physical therapist, creatively making things work for therapy visits in the homes of children. Dear Old Dad has helped me out a few times and today was no exception.

Together (well mostly him), we made this fun board for my special guy and I wanted to share.

photo 6
I liked it so much I decided “we” needed to make 2 so I could keep one for work too!

photo 11

 

I’ve always admired these boards and while they are very focused on fine motor work, I’ll be able to incorporate them into sitting and standing play…maybe even as a motivator for my little ones who are almost crawling but need a bit more motivation!

So if you are interested in making something like this, I’m happy to share that it was not overly expensive. Total cost was about $20 each.  I basically strolled up and down the aisles of Lowe’s choosing mismatched things that were interesting to turn, twist, flick, or flip. (This made the regulars at Lowe’s a wee bit nervous I think).  That part of easy. I will say if you are going to try it you need someone handy and with a few basic tools (electric drill, small saw, nail gun), which worked out much better than my original plan to glue gun everything down!

Here are some of the items I used.


I can’t wait to gift my special guy with his “one of a kind, made with love by my Dad” creation and to try mine out too. Even more fun that playing with these might be the fun I had playing today in the shop.

Like my ring?

 

board ring

Avoiding the label – and why it matters

When I was a graduate physical therapy student at West Virginia University, I was blessed with some incredible professors. I learned from, worked side by side with, was challenged by, and inspired by some amazing professionals that taught my classmates and I about the many basics and specialized area of the practice of physical therapy. This morning, I was thinking about of my favorites. Dr. Mary Beth Mandich was (and is) the chair of the PT department and is a pediatric specialist. She inspired me through the research she did, the collaboration and influence she had on the NICU department at our university’s medical center, and her deep knowledge in many pediatric interventions. And while I remember all of that, it is something different that I remember most about her. Often times, when discussing a case, or teaching, it becomes automatic for a therapist (or other medical professional) to describe the patient by their diagnosis. For example, “I had a 54 year old right hemi,” to describe someone who had a hemiplegic stroke. This was a NO-NO in Dr. Mandich’s code of ethics. I remember her passionately explaining to us, that these people, OUR patients, were people, not diagnoses. She firmly but passionately explained that “that hemi” could be a father, a son, a golfer, a dreamer, a wood maker, a friend, and a sports fan. Labeling them by their diagnosis lessened their individuality and lessened the focus on WHY it was so important for us to do the best job we could to rehabilitate them. When someone would slip and label their patients by diagnosis, Mr. Mandich wouldn’t lecture or belittle us. She, like a seasoned Mom, would give us “the look” until we caught our own mistake and corrected ourselves. That lesson of love has stuck with me for 13 years of practice.

I am married to an occupational therapist. This is helpful when we can support each other with knowledge and experience in out own fields and quirky and weird when we have conversations on the beach about people’s gait deviations as they walk by. Yes, most couples might comment, “Wow, look at those abs!” Brent and I say, “Wow, what an antalgic hip…it needs replaced!” Strange, I know. Anyway, Dr. Mandich’s lesson has even permeated our marriage! When my husband comes home and says, “I had this below knee amputee today,” I now give him “the look,” and he quickly corrects to “I had a man today who had a below knee amputation.” He’s gotten pretty good at avoiding the label over the years himself!

So I was thinking about Dr. Mandich and labels today. Is it human nature to label people? Is it easier for us if we can put them in clearly defined little boxes? I think it might be. We do it all the time, but it doesn’t mean it is a good thing. We label other mothers….”Type A, Anti-vax, homeschooling, drill sargent, stage mom, granola cruncher”…whatever. We do it to professionals in our lives…”the grouchy teacher, the inattentive doctor, the crazy post lady.”  We even do it to our kids! “This one is lazy. That one is high strung.”

Here’s the thing. It’s true that these labels might be ONE describer of an individual (or maybe not). But would you want to be identified by just ONE word? I would not. Especially this morning because it would be GRUMPY!

So here’s my Monday morning challenge to myself…and to you.  When you encounter people this week, anyone from the clerk at Target to your spouse, the child you work with to your own child,  try to avoid the label…even in your mind.  And together let’s see what consciously doing so does to change US!

Need a visual inspiration to do so? I love this one!  Have a great week!

766ccf033fcd0c34840fed8f06a73f1b

The Secret of “The Hot Pink Tape”

This post was originally written for Child Guide Magazine.  Check out the many resources Child Guide offers as well as this article and others HERE.

If you are a runner, or have watched a race or even perhaps a professional sporting event lately, you may find yourself asking, “What is that bright colored tape people are wearing? And why is it cut in crazy patterns?” That trendy tape, often seen in bright pink or blue or sometimes black, is called Kinesiotape and it isn’t exactly new, even though it may have gained popularity in recent years in the US. But did you know that Kinesiotape is not just for athletes? This versatile tape is actually a very effective tool for children with motor challenges as well!

 

Kinesiotape is a progression of Kinesio Tex, which was invented by Dr. Kenzo Kase in Japan in the 1970’s. Dr. Kase was searching for an alternative tape to traditional athletic tape. He noticed that traditional tape often restricted movement, did nothing to aid healing, and could potentially cause additional injuries. Out of his hard work, Kinesiotape was born. What makes it different? Kinesiotape is elastic, latex free, cotton based tape that can stretch up to 30-40% of its original size. These properties allow it to be more versatile than traditional tape. In additional to allowing full range of motion and being very comfortable on the skin, the elasticity of the tape allows it to perform many functions. Kinesiotape is meant to be placed very strategically depending on the reason why someone is wearing it. Depending on placement it can increase healing, decrease inflammation and swelling, and support weak muscle by encouraging activation, or increase function lost by spastic muscle by encouraging a decrease in muscle tone. In addition posture can be improved with use.

kinesiotape-baby-buikjes

Sounds pretty incredible, right? Here’s how it works. Our muscles are each individually covered in a think filmy layer called fascia. Between the skin and this fascia are layers of connective tissue. When Kinesiotape is applied strategically to the skin, it tugs on the skin, which pulls on the connective tissue, which pulls on the fascia, which tugs on the muscle. The result is either an increased “fascial envelope,” allowing for 1) increased removal of toxins (lactic acid and waste) and increased space to allow fresh blood to restore tissue or aid in healing or 2) Encouragement of activation of a specific muscle for a specific purpose., improving posture or strength through increased use.   When used this way, the tape is like a constant tapping on weak muscles saying, “Use Me!”

kinesio-tape-diagram

This can potentially best be illustrated by looking at something concrete like a bruise.

In the images below, Kinesiotape has been used to increase the space between the fascia and the skin and allow quicker healing in the places where the tape was placed.

How is this used with children or anyone with motor challenges? In many ways! Children with atypical muscle tone (either hypotonia (low tone), hypertonia (high tone) or any sort of weakness may benefit from Kinesotape. When the tape is applied strategically over the muscles that need assistance or strengthening, the result is a slight tug that encourages the child to use their body in a specific way. When used this way, Kinesiotape can be used as a bridge to encourage strengthening or function through active participation. The child wears the tape, the tape encourages the child to move their body in a way that strengthens, stretches, or improves function, and eventually the child may get strong or functional enough to not need the tape. An example would be using the tape on the abdominal or back muscles in a child with Downs Syndrome who has trouble sitting alone or on the hand of a child with Cerebral Palsy who has a hard time opening the hand to grab for things.

Owen Ruffner is a 2 year-old child has benefitted from Kinesiotape in large ways. Owen has Mitocondrial Disease and as a result has weakness and low muscle tone, which challenge him when moving and attempting to control his body. Owen is learning to walk with a gait trainer and without tape, tends to drift to his left weaker side. When Kinesiotape is placed on the left leg, encouraging full activation of his muscles, he able to walk in a straight path. These results were immediately noticed after 1 application by his Physical Therapist. His mother Kasey McDaniel has been thrilled with the progress. She shares, “Kinesiotape has helped Owen by giving him a chance to use his muscles on his weaker side. I have noticed a huge difference with daily function and with helping him as he learns to walk.”

1512584_720967667942478_2553859415490411518_n

The possibilities are quite endless with Kinesiotape as it is relatively low cost, is easily tolerated on the skin, is waterproof, and usually lasts 3-5 days per application. It is very important that anyone using the tape is initially taped by someone with strong knowledge of anatomy, such as a licensed physical therapist, and by someone who has had training on the Kinesiotape method.  Once a few applications are applied, tweaked as needed, and monitored, a successful method can be taught to a willing parent, who could continue the taping at home, with the help of a physical therapist.
It is true that Lance Armstrong was one of the first to expose Kinesiotape to the United States, swearing by the pink tape specifically for his knee injury, but your child may benefit as well. If you haven’t tried it yet, the risks and cost are low, but the benefit is often quite high. Ask your pediatric PT about Kinesiotape at your next visit.

 

For more information about Kinesiotape and the Kinesiotaping method, visit: http://www.kinesiotaping.com/ and http://www.kinesiologytapeinfo.com/pediatric-kinesiology-taping/

 

What I learned from a real life superhero without a cape

A few weeks ago, amongst the CRAZY of end of school year activities, we traveled to our state’s capital Charleston, WV.  My youngest daughter won our county’s Young Writer’s Contest for her age and with that came an invitation to spend the day on the University of Charleston’s campus with published authors in writing workshops. Charleston is a 5 hour drive from our home and the event was on a Friday, but there was no way she was missing this one. My mom is an English teacher and literary nut and so for the two of them this was the Superbowl.  So my husband and I and both our mothers (super grandmas) escorted her to the event. Here’s a few pictures from the day.

At the awards ceremony at the end of the day, the winners from each division were chosen to read their entries from the stage into the microphone. As the host of the event gave us an overview of what we were about to hear, my ears (and heart) perked up when he said that the 3-4 grade winner had Autism and would share his entry that gave us a view of what living with Autism is like. My protective therapist nature kicked in and I immediately was concerned for the boy I did not know. Inside my head I thought,

“This room is filled with hundreds of people.”

“They want him to speak in a microphone?”

“There’s an echo in here and loud clapping, will that overwhelm him?”

As Sawyer Hinton from Mingo County approached the microphone, my worries all melted away. This was a composed, bright, confident boy. His thick Appalachian accent required me to intently focus to clearly hear each word, but his message was as clear as could be.  His goal was to share what he knows about Autism as an advocate not just for himself, but for others. He doesn’t consider himself to have a disability, but a superpower. As he finished, the whole auditorium stood and clapped for several minutes. I couldn’t stop the tears just like those around me – men, women, kids – all blubbering. It could have been a scene from a movie.  I was as proud of this kid as I have ever been for my own and I didn’t know him!

My daughter was blessed to be given the opportunity to spend the day with many inspiring teachers and authors, but we were all blessed to hear Sawyer Hinton, who in my opinion had the best sense of himself and the world around him  than any other elementary kid I have ever seen. I only wish I had had a video to show you the incredible moments.

Autism now affects 1 in 68 children in the US. You likely have a relative or a friend with Autism or someone you know has a child with Autism. Sawyer’s goal was to use his day to spread awareness. We’d like to use our blog to help him as he helps others. This boy will do big things in the world. Enjoy! (and please share!) And thank you Sawyer!

Superhero Without a Cape

by Sawyer Hinton

Grades 3-4 winner, Lenore PreK-8, Mingo County

Did you know that not all superheroes wear a cape? I have a superpower that makes me very special. I am completely different from every other 8-year-old that I know. The thing that I call my super power is what most people call Autism. I know that it is normally seen as a disability. But I look at it in a different light. I would much rather call it a special ability. Autism allows me to process everything in the world around me differently than the average child. My family has helped me cope with my diagnosis. So hopefully after reading my story, you will discover that there are superheroes all around you. They just don’t wear capes.

I have been called some really ugly names for being different. But being peculiar is just who I am. I want to explain how you could always turn a disability into a superpower by just looking at things in a different way. Take my obsessiveness of order routine for example. Most people consider that a disability. I, on the other hand, just think that I am more organized than everyone else. Now doesn’t that sound more positive by just changing the words? I prefer to be alone most of the time. But I really have more time to think, read and dream. I come around people in my own time and at my own pace. Is that not how most people get to know one another? I just take a little longer. My brain is larger than normal. Seems to me that is a positive trait. I have room to learn more. One of the stigmas placed on people like me is that we are mentally retarded. That could not be farther from the truth. I am a genius when it comes to certain things. Putting what I know on the outside is what I struggle with. However, the ability to retain information by just hearing or reading it once is definitely a perk. So, has it become more apparent that I am super special? I cannot bear the thought of certain textures, smells, tastes and things that have to do with sensory perception. Guess I am just set in my ways. But isn’t every single person that way? I am a little extreme but still not disabled.

I have not mentioned all the quirky things that I do. But what superhero reveals all his secrets? I just hope that I can make a difference to someone else like me. I urge you to take the time to look at the things that make you different and embrace them. Never accept something as a disability, look at it as a special superpower that makes you unique! Hopefully now you can see the superheroes living all around you.

– See more at: http://www.wvgazette.com/article/20140510/GZ05/140519982/1101#sthash.4ocuBaXx.XD82HGUW.dpuf

“The Look” And What It Silently Says to Me From A Sibling Of A Child With Special Needs

Last week I got the opportunity to speak at career day at my daughter’s school.  I drag my big therapy ball, some thera-band and thera-putty, my anatomy coloring book, a baby doll, and other interesting goodies that I play with every day into the school every time I am asked to do this.  The “regular grown ups” (aka lawyers, mortgage brokers etc.) laugh kindly.

 Last week, I had 20 minutes to share what I felt was most important about the profession I love. And then I did it again 3 more times. 100 4th graders and me. I gab on and on about how Physical Therapy is repetitively listed as one of the “happiest” professions, how great the job outlook is in coming years, and what I love about my job. I share that interested students need to like sciences, can’t be repulsed by touching people, and need to enjoy social interaction with many kinds of people.  I am a total nerd, but I get misty eyed sharing about how I love the teaching part of my job and what a blessing it is to motivate parents who get such satisfaction and joy when they get to be the ones who teach their child to roll, crawl, or walk!

I’ve done this for years for elementary, middle, and high schoolers. Without a doubt, when I ask for questions at the end, I get the same ones every single time – no matter the age.

“Did you ever work with an NFL player, NBA player…Professional Wrestler?”

“What’s the grossest thing you have ever done?”

“How much do you get paid?”

“You dissected a real human in school? Ew. Were they alive or dead? Was there blood? Did you cry? Ew.”

As consistent as these questions are, I am always ready for them. And there’s another one that happens every time as well. Usually when we are almost out of time, a child will somewhat sheepishly raise a hand and when I call on them will ask…

“Have you ever worked with someone with Downs Syndrome?”

 

or

 

“Have you ever worked with someone with Cerebral Palsy?”

 

or

 

“Autism?”

 

No other comments. But none are needed. I get the look and I know. This is the sibling of a child with special needs. No words are needed because the look is enough.

The look says, “I know you get it.”

The look says, “Someone like you has been to my house every week and knows us.”

And, “You know how hard my family works for small things that people take for granted.”

And, “You know how sad it is for us when people make hurtful comments.”

And, “You know that I am often expected to be more patient that most kids my age, and that that isn’t easy, and sometimes I’m resentful, or wish for more attention, and jealous. And you know that I feel bad about that but I still can’t help it.  And you know that despite these sometimes “yucky” feelings, nothing makes me feel more proud than when my sibling overcomes and obstacle or learns something new…because they don’t do it alone…my whole family does.”

Career day is a joy. It’s a day that recharges me with excitement about my job and my calling in this world. But, the sibling “look” gets me every time. 

Sometimes I wonder if those kids can silently read my “look” back to them. If they can, I hope they read,

“You are brave. And strong. And important. Not just because of the kind of sibling you are, but because of who YOU are. All alone. As YOU.”

And I hope they hear, “What you are learning from your sibling experience is compassion, and empathy, and a patience, and an awareness, and gratitude greater than average people will ever even know. And it is a gift. And it will make you do great things in your life.”

And I hope they know, “Your parents love you for you. Not because of what you do to help but for who are you are. Are for the special gifts you yourself have.”

And finally, I hope my look back says, “I get it.” And even though I don’t know you, “I’m proud.”

I’ve spent a lot of time thinking about the kid that asked that question last week and the kids who have asked that same question in the years before.  April is a month dedicated to Autism Awareness, Child Abuse Prevention, Mesothelioma, Children’s Footwear Awareness, National Minority Health Month, and Genocide Awareness & Prevention among others.  All are so important.

But I’m here to say, let’s let every month be awareness of siblings with special needs month….awareness of their own special needs. 

How can you celebrate?

Do you know a sibling of a child with special medical or health care needs?

       Take them out for a special day celebrating just them..doing something they love and often can’t do.

       Better yet, volunteer to watch their sibling so their own parent can do the same.

       Make a donation to the many camps that offer attention and love to these super siblings so that a child can attend. Financial costs are often a struggle for families. Sharing your resources to help a sibling attend camp, or play a sport would be a gift!

       Simply be aware of the challenges with families you know or don’t know. Offer help if you feel comfortable. Offer a smile. A “we are all in this together” wink. All can go a long way.

       Teach your child compassion and friendship by modeling it. Siblings of children with special needs have their own special needs – quality friendship is one!

 

Do you have a child with special medical or developmental needs? How do you feel their siblings are best supported? What are their needs? Join our conversation!

 

39dccac54e68c52a87eee468be00aae7

BIG INSPIRATION IN A tiny PACKAGE- how a little girl with CAS taught me to believe and persevere.

il_570xN.523041557_gmmx

I received the phone call after recently rejoining the workforce from  maternity leave with my second child.  I remember exactly where I was when the service coordinator called to ask if I would consider joining the team of a  2 year old diagnosed with Childhood Apraxia of Speech (CAS) whose parents are both special educators.  Whoa!  Talk about pressure!  The family was requesting me because of a recommendation they had received from another family I worked with whose son had CAS.  I had recently developed an interest in the speech disorder after serving two other children with suspected CAS.  I took a couple of courses and settled on a therapy kit to address CAS but like they say, “experience is the best teacher” and I wanted some of that.  So I agreed to be Camryn’s speech therapist, anxious to learn more about CAS through my treatment of her.  Although I didn’t know it at the time, Camryn would end up being  MUCH more to me than just experience.

I first met Camryn one Spring evening at her home.  She was a pint-sized toddler full of spunk and cheer.  Our first interactions let me know it was going to be a long road for her.  I explained to her parents that her speech therapy would be more like a marathon than a sprint.  They asked me questions like, “Will she ever talk ‘normal’?“ and “Will this be something she will struggle with for the rest of her life?”.  All valid, good ‘concerned parent’ questions, all of which I could not answer.  And so began my journey with Camryn, me teaching her-her inspiring me!

ASHA (American Speech-Language and Hearing Association) defines Childhood Apraxia of Speech (CAS) as a motor speech disorder where children have difficulty saying sounds, syllables and words in the absence of muscle weakness or paralysis.  The brain has difficulty planning the movements required of the tongue, jaw, lips, etc. needed for speech production.  The child knows what they want to say but are unable to get their mouth to move in a way to produce the words.  These children require frequent, intensive speech therapy to improve and sometimes CAS co-occurs with feeding difficulties and/or cognitive delays/learning difficulties.  There is little data available reporting the prevelance and incidence of CAS however, some sources suggest that 1-10 in 1000 children have the disorder.

When I started with Camryn she could say /s/ and /ah /.  That was it.  Because of her sweet, laid back personality she wasn’t yet experiencing much frustration.  Plus her mom had been very proactive in teaching her sign language, which gave Camryn a way to express her immediate desires.  We started with 2 sessions per week and continued on with this schedule for a few years.  Her improvement was slow and steady with some bursts of progress here and there.  While me being there was important to guide her therapy along, the biggest job was left in the hands of her family.  I stressed to them that her progress would be hugely dependent upon them practicing with her EVERY single day.  Their dedication was obvious when I would come week to week and witness her saying new sounds and syllables with less effort.  Each sound, syllable and word Camryn said was earned.  Repetition, practice, dedication, perseverance and determination were required for her to do something the rest of us take for granted.  Camryn’s challenges were huge.  What I was asking her to do week to week in therapy was extremely difficult but she didn’t give up.  When I think of the challenges Camryn has faced over the years I am ashamed to think how quick I am to give up on much less challenging tasks.  She has never backed down, only risen up.  And her progress and successes are proof of that!

 

It’s been 5 years since I had the pleasure of meeting Camryn and her family. Today she is an aspiring gymnast who attends kindergarten, speaks in 5 word sentences, ask questions and carries on lengthy conversations.  She has inspired me and challenged me beyond my expectations.  She is my success story; my proof that hard work and a positive attitude can only lead to awesome achievements!  Camryn will go far in this world inspiring others to rise up to whatever challenge they may be facing.  I am proud of her, and her family!  And Camryn will forever remain one of the strongest, bravest, FIERCEST girls I know!

 

If you are concerned that your child, or a child you know, may have CAS, contact a speech-language pathologist to request an evaluation.  For more information on the disorder visit:  www.asha.org and www.apraxia-kids.org.

Navigating Special Education in the School Setting: What Parents Need To Know

Child Guide Magazine is a great source for information and to find fun activities! Milestones & Miracles is proud to team with this great FREE publication by writing a column geared toward the Special Needs/Differently Abled Population.  The article below is our contribution to the FALL 2013 Issue which is filled with great “Back To School” Information. Grab yours today or view online at: http://issuu.com/childguidemagazine/docs/septoct2013cgweb

 

Are you a visual learner or auditory learner? Do you learn best by actually doing? Do you need a quiet room to retain what you are reading? Each one of us learns in unique ways. Many good teachers recognize learning styles, strengths, & challenges and accommodate the children within their classrooms. But what happens when simple modifications aren’t enough? Some children need additional supports and services to make the educational experience a positive one. And while learning about and implementing those services can seem very intimidating for parents, the process does not have to be.

Students 3 years of age and older that need supports and services in the public school setting receive them under Part B of the Individual’s With Disabilities Act (IDEA). This is a Federal Law that ensures special education services. If you are having concerns that typical classroom strategies are not meeting your child’s needs, speak to his/her teacher early. Sometimes, simple changes to a daily routine (such as changing seat location or providing a check list to stay on task) can make a huge difference.

If simple changes are not adequate, you or your child’s teacher may request testing to further identify strengths and challenges. The results of testing are reviewed at an eligibility meeting, usually held at the school, with parents, teachers, and other professionals (therapists, coordinators etc.) in attendance. If your child is found eligible for special education services, you can consent to move forward with an Individualized Education Plan or IEP. Parents, teachers, and others who have knowledge of your child’s specific needs such as therapists, nurses, psychologists and other professionals help create the IEP. You can invite others who know your child well and might help with the process. An IEP is a legally binding document that includes specific goals for your child, services and frequency of those services to support goals, & any additional materials needed to support your child (examples include special classroom materials, customized seating, or communication devices).

The IEP serves as the “map” to guide your child through the educational journey. It must be reviewed yearly, but can be reviewed more frequently per your request as your child changes, progresses, or new challenges arise. It is important that parents understand IDEA and their child’s rights under it. Seek out the assistance of an IEP advocate (counties hire these individuals) and ask to schedule a meeting to learn more and review policies that protect your rights. Each state develops a policy that outlines procedures for defining child find (how the state finds children that need to be tested), eligibility, and services as well as outlining parents’ rights and responsibilities. Refer to your own state’s Department of Education for more information on your specific policy or for support on learning more about individuals and organizations that serve to support parents through special education.

It is also important to understand that the IEP serves to meet your child’s EDUCATIONAL needs vs. MEDICAL needs. For example, if a child with Cerebral Palsy has tight hamstrings and an atypical walking pattern but can get around the classroom efficiently and safely, he/she would benefit from physical therapy, but would be served in a therapy clinic vs. a school setting in most cases.

Someone who knows both sides of the special education world in the public school arena is Tracey Parks. Parks is a 5th grade teacher at Tomahawk Intermediate School in Hedgesville, WV. While she has taught students of all learning styles and abilities for 18 years, she has first hand experience being a parent navigating the IEP process with her 9 year-old daughter Jordyn. She offers these wonderful tips to parents:

• COMMUNICATION IS KEY: Communication early and often. Request a meeting with all teachers who will be interacting with your child very early in the year (before the first conference) to share what works best for your child. Use a simple communication journal (could even be on a number system, such as 1= good day). Teachers have little time to write daily lengthy notes, but sharing simple information daily can be helpful to both parent and teacher. Parents might also consider sharing important things daily such as deviations to sleep routines, digestive issues, changes at home, or illnesses as they might impact the child’s day.

YOUR CHILD NEEDS YOU TO SHOW UP: IEP meetings are your chance to learn about your child from the people who spend hours with him/her! Make arrangements if possible to be there so that you can listen and learn, share your opinion and ideas, and brainstorm as part of the team. Your participation shows your child’s team that you are sincere about working with them for the benefit of your child. If you can’t attend in person, request a phone conference.

• ASK QUESTIONS/MAKE SUGGESTIONS: Don’t be afraid to ask questions regarding your child’s education. A good teacher should be willing to take the time to explain and answer. An example is asking for a second set of books so you can help your child at home. If you know of something that benefits your child at home or in other settings, such as during private therapies, don’t hesitate to share with your child’s team.

• BE PATIENT & POSITIVE: Remember that teachers are responsible for many children besides yours. While your concern or question may be incredibly important to you, try to allow reasonable time for the teacher to respond. Go into meetings or conversations with a positive attitude. Your disposition can be contagious and can make these exchanges more productive and pleasant for both you and the teacher.

It is important for the success of each child that parents and professionals work together on common goals. Successful IEP’s do just that. While the process might seem daunting at first, it is important to remember that there are many people who care about your child and want to support you. Seek out their experience and help, lean on parents with similar experience, and keep yourself focused on your priority – your child being learning successfully!