At Kid PT we are passionate about the courageous lives of the children and young adults we support. September is Muscular Dystrophy Awareness month and we want to share with you some of the specifics of this condition we know so well.

What is Muscular Dystrophy?

Muscular dystrophy is a progressive, muscle wasting disease. It is caused by a mutation of the gene that is responsible for making the dystrophin protein. Dystrophin is important in providing stability to the muscle cells as it acts as an anchor between the inner parts and the outer layer of the cell. When this protein is absent or damaged, the muscle cells will break open easily which leads to muscle cell death. This can affect all the muscles in the body including the muscles used for walking, talking, breathing, swallowing, and even the muscles of the heart. 

There is a spectrum among the varied types of  muscular dystrophy that range in severity, location of muscles affected, type of gene mutation, and when symptoms begin from early childhood to adulthood. Specifically, today we will discuss Duchenne Muscle Dystrophy (DMD) as it is one of the most common types. About 15,000 boys in the US have DMD and there are about 300,000 cases worldwide. DMD occurs primarily in boys and the onset of muscle weakness is typically noticed by ages 3-5. Boys with DMD typically will lose their ability to walk around the age of 10-12 years old and have a life expectancy that extends into the mid 20s and early 30s.

Management of DMD:

Due to the wasting of muscles and reduced dystrophin throughout the body, individuals with DMD are at increased risk for fractures, scoliosis, falls, heart disease, difficulty breathing, skin breakdown, learning disabilities, respiratory infections, difficulty swallowing, and other complications. Management of muscular dystrophy requires collaboration of a multidisciplinary team in order to address the multiple systems that are impacted by DMD. Some of the key players on the care team are primary care physicians, cardiologists, pulmonologists, neurologists, psychologists, orthopedists, respiratory therapists, dieticians, nutritionists, nurses, physiatrists, physical/ occupational/ speech therapists, and social workers. As there is no known cure, treatment traditionally consists of use of steroids, respiratory support, supplements, and a variety of medications and equipment to manage the varied accompanying symptoms. Despite these problems, we’ve seen such vibrant joy in victories small and large as these young people reach goals they may have lost hope for.

How PT contributes:

Physical therapy is very different for people with DMD compared to the general public as certain strengthening activities can be harmful to the integrity of their muscles. Physical therapists are key players in monitoring the disease progression, implementing an appropriate home stretching program, educating families and schools on the capabilities of those with DMD, and recommending the use of night splints. As physical therapists are movement specialists, they assist clients with DMD and their families by providing activity modification recommendations, preserving optimal joint mobility and tissue flexibility, recommending environmental modifications, ensuring trunk and ribcage mobility for breathing and also ease of movement, monitoring and managing scoliosis, and recommending and adjusting appropriate mobility aids and assistive devices when walking requires too much energy demands and becomes a safety concern. The physical therapist’s goal is to help the child or adult with DMD to stay as mobile as possible and conserve energy in order to access varied settings from their home to school to places of amusement including sporting events, concerts, amusement parks, and travel destinations with the highest level of independence and safety as possible without overdoing it and causing undue damage. We’ve seen social engagement, connection with others, pursuing activities of interest, and reaching personal goals bring meaning and joy to the lives of our clients and are privileged to be part of the process to help our clients with DMD live to the fullest. 

Promising Research Developments:

Research has led to significant progress towards discovering effective treatments for DMD. Today adults with DMD are living longer and maintaining independent mobility for longer periods of time compared to only a few decades ago. The advances in research that have been made continue to improve the quality of life of people with DMD. More breakthroughs are on the horizon as new gene-based therapies and exon skipping treatments are being developed which have the potential of reducing and halting disease progression. At Kid PT we are always on team hope that the future for those living with DMD will continue to brighten and that our role as therapists will continue to evolve with these advances in technology and research.

Resources for Information and Donations 

For more information on DMD and also foundations that you can donate to support both the research and children and adults with DMD see below:

Back to school season can be a time of significant change for young students and their families. When a child with special needs begins a new school year, there’s often a period of adjustment as he or she learns to navigate new classrooms, teachers, and classmates. Transitioning into a new school setting can be difficult for any child, but it can be especially challenging for children with behavioral difficulties and learning disabilities. Below we’ve included some strategies that can help your child start a new school year on the right track. 

Create a positive dialogue around going back to school, making new friends, and trying new things

By building a positive dialogue around what is happening and engaging in social support your child can be excited about starting a new year at school.

Take your child back to school shopping

Taking your child back to school shopping can help ease this transition process by familiarizing them with their new classroom environments before they actually start classes in September. Allow your child to bring their back to school supply list, help them make choices of what to get. Creating a sense of control over the situation allows your child to become familiar with a new situation. 

Read stories about back to school

Stories are a great way for children to understand what happens on the first day of school from the perspective of another child depicted in a book. Understanding what to expect can help a child feel more comfortable and prepared for what’s to come. 

Create a “morning routine” visual schedule 

A “Morning Routine” visual schedule allows you to visually represent the activities you have scheduled for your child each morning. The visual schedule board is a great way to organize the morning routine and promote independence in the morning at home.Use pictures to depict: Wake up, brush your teeth, get dressed, eat breakfast, get on the bus, etc. Predictability is comforting to kids and allows your child to know what to expect. 

Use sensory strategies to help your child self regulate 

Sensory strategies such as heavy work and proprioceptive feedback can help your child self regulate, especially during back to school transitions. Heavy work can include pushing a laundry basket full of toys, jumping on a trampoline, or carrying something heavy in their backpack. Deep pressure strategies include tight hugs and squishes on their arms and legs. 

Give them space and time to adjust

Every child is different and will need their own time to adjust. Help your child talk about their day after school, give them space to tell you how it made them feel and address any concerns they may have.

At Kid PT, our occupational therapists work with parents to help them and their children gain awareness of the challenges that may accompany new environments, and give tools to navigate those challenges in positive ways. Our occupational therapists will work with your child to develop skills, strategies and confidence needed to adjust to the school environment. Unsure if occupational therapy is right for your child? Call us to ask you questions or come in for a free consult to discuss.

Keep Your Home and School Life Calmer this Back to School Season

It seems to happen every year. One minute we are barbequing, lounging in the pool, camping, going to the beach or on fun day trips, perhaps even on a long anticipated vacation, and then, BAM! The scene changes drastically: stores are merchandising Fall, as in Pumpkin Spice Everything, Halloween decor and Back to School items galore!  For kids it can be jarring to be staring at the reality of returning to a more structured routine, but it can be equally disconcerting for parents, especially if there are unknown factors regarding the school experience or their students’ potential reaction to a new school year. Couple this with the uncertainties of the last 2.5 years of life and stress all around can start to grow.  

First, let’s breathe. With a bit of planning ahead, organization, and tips from some experts, we CAN put a positive spin on the experience of preparing for Back To School activities. Whether this is your first year of having a child in school or your tenth year, every new experience i.e. start of a new school year, is going to have some similarities and differences to the ones that preceded it. Hopefully, this guide has something that  parents with different types of experiences can find helpful. Let’s Do This!

According to the ADDitude magazine online article “10 Things To Do BEFORE School Starts”, some things parents might want to do ahead of the start of the school year (or soon thereafter) are:

Scout the School   

Walking through the school before the school year starts can reduce both child and parent nerves, as you know what to expect and where things are. If possible, look at the child’s actual classroom. Finding key places like the bathrooms, auditorium, nurse’s office, and gym can calm some jitters about getting lost. Remind your kids that it is ok to have to ask for directions! 

Look over any Accommodations (if applicable) 

 If your child has any accommodations (think 504 Plan or IEP), review what educational goals have been met, and any remaining challenges. Before school starts (or soon thereafter) reach out to schedule a team meeting, to talk about what was effective last year and what goals you’ll focus on this year. This can be a time to update the team on any new achievements or challenges that may prompt revisions to plans.

Organize a School Systems That Works  

You know your child best, including their biggest organizational challenges. It’s better to strategize potential solutions before or soon after classes begin. Together ( if your kiddo is amenable), browse an office supply store, dollar store, Walmart, Target or websites like Amazon and see what type of systems designed for organizing papers, supplies, and time, might best fit their needs. Pick options that are simple enough to work both at school and at home. For example, if losing homework is a known issue, consider pocket folders and label them for work to do on the left, finished work on the right. Can’t find books in their locker?  A locker shelf and encouragement to organize books according to the daily class schedule might do the trick.

Review Class Schedule Together 

 If your child is in one classroom all day, knowing how the day/week will be structured and what it will consist of can offer a sense of security.  If they are switching classrooms, ask them if they know where all listed classrooms are located.  

Create a Home Staging Area 

Pick a spot close to the door and stock it with things like open cubbies/shelving, baskets, and/or hooks. This should be “HOME BASE” for items like books, homework, backpack, notes, sports/activity bags/equipment, keys, lunches, and other school-related articles. Hang a large whiteboard to help her remember tasks and items. Consider setting timers to help get kids and parents out the door on time.  Old school Dollar Store wind up timers are one great option that keeps everyone off their phones.

Don’t Wanna Miss a Thing: Read Info from the School 

It is tempting to skim over the endless number of emails, website links, videos, online sign ups, and even papers that your students school sends you. Sure some of it may involve signing up to be a chaperone at a dance or volunteer for the Holiday Market, BUT there is also crucial information that can be buried in the parade of documents.  Schedules, calendars, classroom policies and signups for important events can be missed.  Trust me on this- you don’t want to be the ONLY parent who misses the Meet the New Class Goldfish Tea. 

Strategies: 

  • Set up a dedicated folder in your email for your child’s school items (you can break down into categories/subfolders later as needed).  If you have paper documents or printed permission forms, use a physical file folder to start.
  • ACTUALLY READ THE INFO– dedicate a 15-30 minute timeframe (depending on the number of kids and or/documents you have to review)  to read the documents. It will set you up for less stress and the ability to binge watch something or listen to a podcast at a later date
  • Take Action (if needed)– sign any electronic permission forms, print out and sign and put in email (or backpack) any that have to be returned to school, along with any fees or other items (lie classroom supply donations)
  • Put Important Dates and Numbers where you can find them– whether this is on a computer, phone, paper calendar, or refrigerator white board, just make sure you know contacts for school, transportation, hours and days your child is in school (and off school or has early dismissal).

Roundup of Helpful Links for Strategies and Products 

There are oodles of resources out there to help parents manage and control all aspects of the Back to School journey. Here are a few we found that we thought were nifty, helpful and worthy of sharing. Don’t be afraid to try new techniques to manage your family’s back to school schedule. You can reach out to other parents (IRL, through online groups, or by reading blog info online) to find out what worked for them for a particular challenge you are facing. But ultimately, it’s YOUR FAMILY, YOUR SOLUTIONS.  We are rooting for you and you kids to have a sane, successful and super start to the school year!

Note: we have no affiliation with and get no  incentive from any of the websites or products we list.

At happymomhacks.com website, a busy mom shares checklists she created with what kids need to bring to school and for after-school activities, as well as easy DIY homework stations & backpack storage ideas https://happymomhacks.com/how-to-be-organized/

Start the school year off right! Download this free book of invaluable back-to-school tools, and get more school and learning help from ADDitude via email.

Magnetic whiteboard for family organization:

Clothes Organization 

No Hassle Shoe Tying

For Easier Wake Ups- Sunrise Alarm Clock

Keep Art and Keepsake Papers organized

Visual Time Tracker for Homework or Chores

REFERENCES:

Here at KidPT, we treat kids with many different forms of disabilities, and we hear all the time how tricky it is to find places that are accessible and disability friendly for quick, family fun getaways. To help fill all your kiddo’s weekend fun needs, we thought we would compile a list of disability friendly travel destinations within driving distance that have been visited and approved by families with adults or children with disabilities.

Looking to travel close by? Try some of these disability friendly destinations located within driving distance of New Jersey for a weekend getaway or short vacation! 

Washington DC

Washington DC is the city where the Americans with Disabilities Act was passed and made a law and how fitting that it is such an accessible city! Nearly all of its attractions, shops, and restaurants are wheelchair accessible. This includes the National Zoo, Capitol Building, Lincoln Memorial, all the Smithsonian Museums, the Washington Monument, and other famous landmarks across the city. The metro is also wheelchair accessible and a very easy way to explore the city, you can roll into the metro with ease and then take an elevator to get to the metro lines. The city is also mandated to make all taxis wheelchair accessible too, which will open up even more possibilities for traveling throughout the city. See below for a great guide to all the wheelchair accessible locations throughout the city.

https://magazine.trivago.com/the-ultimate-accessibility-guide-to-washington-dc/

Shenandoah National Park, Virginia

Shenandoah National Park is beautiful and full of nature AND has wheelchair accessible trails. Two of the accsssible trails of note are the Limberlost Trail and the Rose River trail, which are both smooth and offer stunning landscape views.

https://www.nps.gov/shen/planyourvisit/accessibility.htm

Sesame Place, Philadelphia, PA

The Sesame Place is an amazing theme park for kids with many different needs. It is based on every kids favorite television show, Sesame World, and offers theme park rides, water rides, and shows and parades too. One of the real benefits of the Sesame Place is that it is also a Certified Autism Center (CAC), and was the first theme park to earn this designation. Plus, it is wheelchair accessible too. Upon entering the park, they offer a “Ride Accessiblility Program” questionnaire that will let you know which attractions will fit your family’s needs the best.

https://sesameplace.com/philadelphia/

Smugglers’ Notch in Cambridge, VT

Smugglers’ notch has many options for the whole family, like various fun camp activities and options, many fun pools to choose from, and most importantly, the Smugglers’ Notch Adaptive Program (SNAP). SNAP features many adaptive activities for kids, such as Arts and Crafts, guided hiking, kayaking, mini golf, Nature time, S.T.E.M activities, Swimming and Adaptive Swimming Lessons, and Waterslide activities. The mountain environment is also very relaxing for parents, with nice mountainside condos available.

https://www.smuggs.com/pages/summer/kids/adaptive_programs.php

Legoland, Goshen, NY

Legoland is a special needs-friendly and wheelchair accessible theme park that any lego lover is sure to fall in love with! They also offer a list of recommended attractions depending on your child’s disability, and there are many wheelchair accessible attractions throughout the theme park! Most of their rides and attractions are wheelchair accessible, like DJs Dizzy Disco Spin, Merlin’s Flying Machine, The Dragon, and so many more! 

https://www.legoland.com/

https://www.legoland.com/new-york/plan-your-visit/know-before-you-go/special-situations/

Resources: 

https://parade.com/1002319/marynliles/handicap-vacations/

https://enablingdevices.com/blog/best-vacation-spots-handicap-access/

https://blog.cheapism.com/wheelchair-accessible-vacations/

https://www.gorving.com/tips-inspiration/expert-/10-most-accessible-places-visit-us

The Summer Is A Magical Time For Childhood.

It allows an increased opportunity for outdoor play, creativity, exploration of new environments, unstructured social interactions with peers, and travel to new places via day trips or family vacations. 

Whether your child spends more time outdoors with neighborhood friends, experiences nature at camp, ventures to the park with the family, goes on rides at amusement parks or carnivals, plays in the sand at the beach, goes tubing or boating, bikes around the block, splashes in the sprinklers or a pool, creates with chalk masterpieces on the driveway, or camps in the woods; your child is in a sensory wonderland.

All these experiences provide your child with significant opportunities for movement and diverse sensory experiences that are so important to help develop their sensory integration systems and gross motor skills and promote self- regulation

No Wonder it is a challenge to transition from this sensory and movement rich environment back to the classroom where our children are expected to sit still and focus on their academic curriculum. 

That’s why we have compiled this Back to School Movement List.  These items may help if your child has an especially challenging time with this transition by incorporating both movement and sensory activities into the school environment in a classroom friendly way. These movement and sensory outlets promote a calm demeanor and an enhanced ability to focus and concentrate so that our kiddos are ready to learn about our crazy, cool world.

Inflated Wedge Cushion

If your kid is: always wiggling, shifting, rocking in, or getting out of their chair or sitting with slouched posture.

How it helps: Improves posture, promotes active sitting, activates the core for improved postural stability, and provides proprioception and body awareness., 

Fidget Chair Bands

If your kid is: often tapping their feet on the floor, pushing the top of their feet into the ground or the legs of the desk, wrapping their feet behind the legs of their chair, wiggling in their chair, getting out of their chair, distracted, anxious, or sitting with slouched posture.

How it helps: Provides proprioception and body awareness, lower limb movement, deep pressure and joint compression with rebound of the band, resistance for hard work which can be grounding for your child.

Chewelry

If your kid is: always chewing on their pencils, biting their nails, gnawing on their shirt/clothes, anxious, distracted, clenching their jaw, or grinding their teeth.

How it helps: deep pressure input, movement and heavy work of the jaw, activation of muscles in jaw and neck which promotes improved postural stability, proprioception and body awareness,  

Wiggle Feet Sensory Cushion

If your kid is: often tapping their feet on the floor, pushing the top of their feet into the ground or the legs of the desk, wrapping their feet behind their chair legs, wiggling in their chair, getting out of their chair, distracted, anxious, or sitting with slouched posture.

How it helps: Provides proprioception and body awareness, lower limb movement, resistance for hard work, deep pressure input, and exploration of texture with the choice of the smooth or bumpy surface. 

Mini Pop It Keychain

If your kid is: often fidgeting in their chair, playing with their hair, distracted, anxious, getting out of their chair, talking excessively in class, clenching their hands, picking at their skin, or tapping their fingers or pencils on the desk.

How it helps: Provides proprioception and body awareness, movement, resistance, exploration of texture, an outlet for restlessness, and activation of hand, arm, and shoulder muscles. 

This is not an exhaustive list and there is no such thing as one size fits all. Consider the strengths, sensory preferences, and movement needs of your child. If you need help navigating what your child’s needs are, try booking an occupational therapy consultation near you. The summer is not over yet, so keep basking in the sensory and movement wonderland.

Medical breakthroughs create better lives

What is SMA?

Spinal muscular atrophy (SMA) is a genetic disease that affects the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle). A majority of nerve cells that control muscles are located in the spinal cord. SMA  primarily affects muscles, because they don’t receive signals from specific nerve cells, called motor neurons. When muscles aren’t stimulated by nerve cells, they get smaller or atrophy.  Because SMA involves the loss of nerve cells called motor neurons in the spinal cord, it is classified as a motor neuron disease.

Degree of motor function decrease is roughly correlated to the age at which SMA symptoms start. Generally, kids who have symptoms at birth or in infancy usually have the lowest level of functioning (type 1). As a rule, later-onset SMA with a less severe course (types 2 and 3, and in teens or adults, type 4) corresponds with progressively higher levels of motor function.

Chromosome 5 SMA is caused by a deficiency of a motor neuron protein called SMN, for “survival of motor neurons”, which appears necessary for normal motor neuron function. SMN has a crucial role for gene expression in motor neurons. 

What are the symptoms of SMA?

The scope of SMA symptoms are broad, and symptoms range from mild to severe. Typically the “proximal” muscles (closer to the center of the body) are the most affected in the body.  SMN-related SMA presents with weakness of the voluntary muscles as a primary symptom and often include shoulders, hips, thighs, and upper back. Lower limbs seem to be more than upper limbs, and there is a decrease in deep tendon reflexes.  If the muscles used for breathing or swallowing are impacted, there may be complications with those functions.  Similarly, back muscles weakening may result in development of spinal curvatures.

What huge treatment advances now exist?

Recently, there have been exciting treatments for various types of SMA that have been complete game changers for individuals who have the disease. Current research strategies have focused on increasing the body’s production of the SMN protein that’s lacking in the chromosome 5-related forms of SMA. Methods include approaches to increase motor neuron survival in adverse circumstances.

The Food and Drug Administration (FDA) approved Spinraza (nusinersen) for the treatment of SMA, on Dec. 23, 2016. Spinraza is designed to treat the underlying defect in SMA, meaning it potentially might be effective at slowing, stopping, or possibly reversing the symptoms of SMA.

In May 2019, the FDA approved Zolgensma (onasemnogene abeparvovac-xioi), which represents the first gene-replacement therapy for a neuromuscular disease. Zolgensma is a one-time intravenous infusion, and is used to treat pediatric patients younger than 2 years of age with SMA, who exhibit bi-allelic mutations in the SMN1 gene. This includes those who are presymptomatic at diagnosis. Read more information at: FDA Approves AveXis’ Zolgensma for Treatment of Spinal Muscular Atrophy in Pediatric Patients.

Additionally, the FDA approved risdiplam (brand name Evrysdi) in August 2020, for the treatment of SMA in adults and children two months of age or older. It is an oral medication that functions to raise SMN protein levels, by boosting production from the SMN2 “backup” gene.

Where can I read more on SMA?

For a detailed and simple-to understand overview of SMA, visit the Muscular Dystrophy Association website for the SMA fact sheet at:

https://www.mda.org/sites/default/files/2020/11/MDA_SMA_Fact_Sheet_Nov_2020.pdf

What’s it like to live with SMA?

Currently, one of the best known people with SMA is Shane Burcaw.  Shane has been affected by SMA most of his life, yet it doesn’t define him fully or keep him from living a productive life as a disability advocate, speaker and author.  Together with his wife, Hannah, they run a popular YouTube channel ,“Squirmy and Grubs” and  share their relationship story with the world, with the hope to change the way society thinks about disability.

The link below is a video on the channel where Shane talks about his diagnosis and early life. It also showcases the amazing relationship he and his wife share.

References:

  1. https://www.mda.org/disease/spinal-muscular-atrophy
  2. https://www.squirmyandgrubs.com/more-about-squirmy-and-grubs

The CDC put out new milestone guidance for families and crawling was removed as a milestone.  This decision led to a lot of uproar in the pediatric physical therapy and occupational therapy world and a lot of confusion for parents!  Let’s have a conversation in this blog post about crawling and whether it is still important for us to consider.

First off, let’s consider the guidelines put out to parents and healthcare professionals.  The developmental monitoring guidance, which is designed for parents to have a quick way to see if their child’s development is on track, no longer includes crawling as a milestone.

This does NOT change child development, developmental screening, or developmental evaluations.  Developmental screenings are recommended to be done at 9, 18, and 30 months of age.  Additionally, Autism Screening is recommended at 18 and 24 months of age. Any concerns about a child’s development will lead to a developmental evaluation, which looks more in depth at a child’s development.  

Developmental screenings and evaluations will continue to include crawling as a milestone.  Given that, we can include that crawling continues to be a milestone and one that is important to address.

Why Is Crawling Important?

In many ways crawling represents freedom.  Crawling is usually the first time a baby can actively explore their environment, versus someone having to carry them from point A to point B. Babies also gain a sense of independence from their parent or caregiver, as they move away from them and then move back.

When babies bear weight on their arms, they develop shoulder stability and they develop the arches of the hands, which helps later on with handwriting and fine motor skills. Crawling also helps develop vision skills and gives babies important sensory feedback, from stimulating the vestibular system while moving in space, gives information to the touch receptors on the hands, legs and feet, and gives proprioceptive information from the joints and muscles. This sensory feedback helps babies develop spatial awareness, or the sense of where their body is in space.

Finally, crawling helps develop core stability and coordination, because you’re using your opposite arm and leg at the same time, along with moving in a rhythmic manner.

All of these components work together as the baby learns to control their bodies against gravity at this new level.

Getting Crawling Ready

The most important thing parents that do to support their babies development is to have lots of floor time, without the use of supports, so that baby can explore.

Babies need to move against gravity, and see, by trial and error, when I reach for that toy, what happens? A lot of times they start moving by a happy accident, like they lean one way to get something and they roll over. If they don’t have those opportunities, those happy accidents can’t happen.

When the baby is on the floor, encourage them to move by putting toys slightly out of reach. As parents, having the patience to let them go through that trial and error process and not jump in can be so hard, and sometimes even I have to sit on my own hands.

The transitions babies do over and over again during play, moving from sitting to belly and back to sitting, from sitting to hands and knees to sitting again, is what gets their little bodies truly ready for crawling. They move in and out of positions, getting their core muscles primed to support them on hands and knees.

Crawling Variations

Many babies will crawl in a typical all fours pattern, but there are so many variations too. Some babies will first commando or army crawl before getting up on hands and knees. This is where we often see lots of different variations and asymmetries. Some babies will do lot of pulling with their arms and some will always push off with the same leg. I generally tell parents not to worry about funny looking army crawl patterns. It will work itself out when the babies are on hands and knees crawling and moving in a much more symmetrical and synchronized way.

Some babies will bear crawl, where the legs are kept straight. This often happens when the baby is avoiding hard floors! As long as you’re seeing lots of variety of movement patterns during play, this isn’t concerning.

Crab crawl: Baby moves with either one or both legs tucked under. This is another common variation. Its often due to asymmetries in the pelvis and hips, but it can also just be a normal variation.

Bottom scoot: Baby uses hands to push across the floor while sitting upright on their bottom. Some babies don’t go onto hands and knees at all and will get around on their bottoms. If baby is choosing this method of mobility, keep an eye out for how they are figuring out how to pull up to standing so that they are able to get to the next stages of development on the road to walking. My favorite activity to introduce to bottom scooters is climbing up the stairs- you can’t pull that off with a bottom scoot!

Crawling backwards: many babies will crawl backwards before figuring out how to crawl forwards; if you see your baby crawling backwards, just enjoy the process and watch them problem solve and figure out how to change directions; they’re almost there!

When To Get Help

Babies will learn to crawl on hands and knees between 8-10 months of age. Like every milestone baby works towards, there are many small steps that add up to the big achievement of the milestone. If a baby is able to do all the steps up to crawling, such as moving from sitting to hands and knees and rocking on hands and knees, they’re on their way.

Some signs baby may need some help with their gross motor development:

  • Happy Sitter: this is the baby that is happy being placed in sitting, but doesn’t move out of the position
  • Baby has always hated tummy time and hasn’t developed a way to move on their belly to move in circles, forwards, or backwards
  • Baby is 10 months and not moving in and out of sitting
  • Baby loves to stand and wants to be placed in standing all the time (not getting there themselves)

At Kid PT we offer developmental screenings to local families who have questions or concerns about their children’s development. I tell parents that at that screening you will either get peace of mind that there aren’t any concerns or they’ll get recommendations as to how to help their child and support their development. Its a win-win!

To schedule a Developmental Screening, call/text us at 908-543-4390 or email info@kidpt.com.

Trusting Your GUT when your child is ill

What happens when your child is ill?

Have you ever thought you were going crazy when it came to your kids? Sure, we all get stressed out by the demands parenting requires of us whether they be mundane, daily happenings (“No you can’t have another cookie!”, “Stop teasing your brother!”) or extreme, unlikely circumstances (Hello pandemic-looking at you!)

But, what if there was something wrong with your child, (who also happens to have neurodevelopmental delays or another neurodivergent diagnosis)  and no experts had any answers for you? What if you took your kiddo to all the “BEST” doctors out there and they either had no answers, their diagnosis conflicted with one another, or worst of all, they just didn’t believe your child had a problem?

Mom gives daughter medicine

Misdiagnosis happens.

I am here to tell you that it happens.  And when it is your child who is struggling and suffering, it is exquisitely painful. You feel like you are living in a nightmare that you simply cannot wake from and that somehow, those around you are seeing a distorted view of reality.  A 2019 article* states that, “the mindset that young children are rarely seriously ill is one of the main reasons that they are more likely to be misdiagnosed than adults are. That’s on top of all of the ways that approximately 10 percent of American adults are misdiagnosed every year. When doctors and nurses expect to see a healthy child with a common short-lived illness, they may miss the uncommon ones.”  

The article goes on to list the main reasons for children receiving a diagnosis that’s wrong or delayed:

  1. Attitude: Since most children are healthy, and most illnesses resolve on their own, doctors may tend to reassure parents rather than accept concerns are real
  2. Biology: Young children’s bodies and systems are radically different than adults, so they present and respond in unexpected ways
  3. Unequipped: Most children’s emergency room visits are to community or adult hospitals that often don’t have needed kid-sized equipment or pediatric experts. Urgent care centers have similar issues.
  4. Communication: Young children don’t understand or know what is wrong so they’re dependent on parents or caregivers to recognize and then interpret their symptoms

Experts may give you the brush off.

However, there are cases where a parent’s concerns are dismissed, as I was when my daughter presented with a long, puzzling, seemingly unrelated laundry list of symptoms that spanned years, nearly a decade by the time a diagnosis was finally rendered.  During that time period, I was given advice from some well-meaning individuals who said things like:

  • “Just accept her as she is and stop looking for answers that aren’t there.”
  • “Doctors are the experts and you have to trust them when they tell you something, even when treatments don’t work or something seems to be missing in their answer.”
  • “You want her to be sick so that you get attention or sympathy”
lab test machine

Did any of this help my daughter get better or me find answers? That would be a resounding no.  Oh, and by the way, that last piece of “advice” above was given to me, in front of my child, by a supposedly well-respected doctor. He dismissed all the hundreds of pages of tests, scans, medical records and prior diagnosis, didn’t help my daughter, and charged for it!

So what DO YOU DO?  You don’t give up- you trust your gut! Parents know their children best and what their “normal” looks like, even if it doesn’t match the textbook image. Remember to believe in yourself and your ability to help your child. Make a bulleted list of every symptom, even if it does not seem totally related, and the date the symptom started. Research the heck out of your child’s symptoms and any test results you have, using the best and most trusted resources you can find.  Become well acquainted with clinical research papers, societies for various branches of disease types ( think brain, stomach, nervous system, etc.)  Join an online group for other parents who may be seeking answers for their child or who may have information to share.

The Society to Improve Diagnosis in Medicine says not to get overwhelmed by the risks of misdiagnosis. Rather, recognize there are a few key things to do, to assist in getting an accurate and (hopefully) prompt diagnosis. These tips also help if your child is in the middle of a diagnostic journey today.

  1. Sign up for the doctors’ or hospitals’ patient portal and check the records thoroughly. “Is the information correct? Are the medications and medical history correct? Read it, correct it, and tell the doctor” or the staff.
  2. Important test results can slip through the cracks and that may lead to misdiagnosis and lack of treatment. Keep track of any tests that are done on your child. That includes blood tests, urine tests, x-rays, and any other type of scan. If your child has a test, simply ask when the results are expected and note it in your calendar. If you don’t get called or emailed with results, call and ask about them. Remember, “No News is No News.” Don’t accept being told, “We will call you if there’s a problem.”
  3. Trust your gut. You’re the people who know and care about your child the most. All of the experts encourage parents to speak up if they feel their child’s symptoms aren’t getting enough attention or if there’s any confusion between what the family is saying and the medical professional is hearing.
  4. If your child isn’t showing signs of improvement, get a second opinion. Ask friends and family members in town for a recommendation of a pediatrician in a different practice, or ask your current pediatrician for a specialist to give a second opinion.
  5. Be prepared before you bring your child to the doctor or an emergency room. While your child is healthy, check if there’s a pediatric urgent care or emergency room close to where you live. If you have a planned appointment, there is a valuable tool you can start using today. The SIDM Patient Toolkit is a handy step-by-step workbook with sections to fill out before, during and after your doctor’s appointment.
  6. If you’re using the internet to look for more information, be sure to use reliable and trusted sources. The American Academy of Pediatrics’ (AAP) Healthy Children section is a great place to begin. 

In closing, you, as a parent, are the most trusted authority on your child.  If you feel that something is wrong with your child and it is not getting resolved, don’t be afraid to speak up.  Your child and your family deserve answers and the best possible care.  Be brave and know that what your GUT is telling you, may be right. (If you have a question for Melanie (author/Kid PT Marketing) email her at info@kidpt.com)

*References

https://www.improvediagnosis.org/dxiq-column/why-your-child-is-more-likely-to-be-misdiagnosed-than-you-are/

I have to admit, I’m not the most coordinated person.  You may have noticed the same about yourself or your child.  

The big question parents often ask me is whether their child is on the clumsy end or is there another explanation for it.  

The biggest question to ask yourself is whether your child’s clumsiness is impacting their everyday life.  Is it making them a wallflower on the playground?  Is it making it difficult to make it through a meal without spilling or dropping something?  Is the child tripping frequently or bumping into things?  

Partially because clumsiness has been the butt of so many jokes in media, its often not taken seriously.  The truth is that clumsiness doesn’t naturally improve and can have a really big impact on a child’s confidence and self-esteem.  

Plus, therapy can help!  So if there’s a big problem impacting a child’s everyday life that is making them feel bad and we have the power to improve it, we can’t overlook it!  

Let’s take a look at 2 different people with Developmental Coordination Disorder (DCD), how it impacts their lives, and then we can talk more about how to know when to seek help.

Meet Jane

Jane is a very warm and friendly seven-year-old girl diagnosed with developmental coordination disorder and dyspraxia. She has never had success with academic, gross motor or fine motor activities, and prefers to talk her way out of challenges. Talking she is good at, but only with adults. She has struggled to make and keep friends. 

Jane started a PT program at Kid PT and after two months of participating in a program working on her visual-motor and rhythmic movement skills, her mom reported that not only was she moving better, but she was having so much more success socially.. Mom said, “I can imagine that if you can’t keep up with the kids on the playground, that’s going to affect your confidence playing with the other kids.”

Mom’s observation was so true and impacts so many children everyday. Our innate sense of rhythm runs in the background of everything we do. It affects how we interact with others and how we multitask emptying a backpack at school while saying hello to a friend while smiling and remembering everything you need for the day. The consistent and reliable rhythm of our brain and body supports all of these seemingly mundane tasks that can be overwhelming if you have to think about them every step of the way!

Meet the Professor

I had the opportunity to meet a brilliant 55-year-old professor a few years ago who had struggled with his body his entire life. As an adult, he received the diagnosis of Developmental Coordination Disorder. 

He talked about years of trauma that occurred in gym class throughout his school years and how writing and driving were still next to impossible for him. This man, a PhD and professor, was trying to make healthy changes in his life to manage his overall health. He knew exercise was important, but could never access it because of his lack of coordination. He found swimming to be his personal answer, but wanted additional help to make swimming more successful.

During his evaluation, I identified many sensory and motor deficits that were greatly impacting all of his movement skills.   His vestibular function (inner ear) was impaired, particularly the vestibular ocular reflex, which keeps vision steady as we move through space. His vision was working too hard trying to make up for vestibular impairments, so his balance was decreased at night when vision couldn’t be relied on as much.

He also had postural asymmetries that he was likely relying on for years that were causing musculoskeletal issues, in addition to affecting body awareness.His movement system had never gone on autopilot. He had limited ability to use his hands and feet simultaneously, especially when he couldn’t rely on vision for feedback.

“For the first time in 55 years I think I found someone who actually understands my coordination issues. I have spent a lot of time and money getting nowhere.” Together, we had found the reasons behind his symptoms, and were able to move forward with building a stronger foundation.

Understanding the building blocks of development of the movement system for an adult, who has only experienced failure with the practice, practice, practice approach, can change one’s perspective dramatically.

 Instead of blaming yourself for not trying harder, you can own your challenges, empower your strengths, and begin to move forward. Awareness of his challenges didn’t change his body immediately, but it did change his perception of himself.

What is Developmental Coordination Disorder?

Children with Developmental Coordination Disorder (DCD) are not simply clumsy. DCD is a motor skills disorder that affects approximately five to six percent of all school-aged children. DCD has been described in many ways over the years, including dyspraxia, minimal brain dysfunction, and clumsy child syndrome. The medical community has chosen to use the term DCD as the preferred diagnostic term. DCD occurs when a delay in the development of motor skills, or difficulty coordinating movements, results in a child being unable to perform common everyday tasks. They often have difficulty keeping up with their peers during gross motor play, have frequent falls, and have a hard time doing daily skills, such as zipping and tying shoe laces.

The biggest challenge is often with learning a new movement-based skill, which is a challenge that is experienced throughout childhood. These children are often labeled as lazy (read more about how NOT lazy these kids are here!). They’re often told that if they would just try harder they could do it. In the past, it was often assumed that children would outgrow these challenges, but research has demonstrated that children with coordination problems do not simply outgrow these problems. In fact, these children are at greater risk for being sedentary and less healthy as adults than their peers. These children are also at greater risk for mental health problems. We cannot risk overlooking the struggles of these children. There is too much at risk for their futures!

Children with DCD are constant victims of imperfect practice. These children blend in with their peers well and are often not even diagnosed. Goal-oriented methods help with the practice component, but this is not enough. Life will constantly present new skills, so this creates a constant challenge, especially throughout childhood. In addition to working towards specific skills, we can work on developing a child’s building blocks of movement in order to also “teach the child how to fish.” Building the foundations of movement, rather than just teaching gross or fine motor splinter skills, improves the child’s learning abilities and decreases their reliance on others.

Children with DCD often have low tone, as well. Due to the low tone, it is generally assumed that these children are flexible everywhere. However, when you look closely at their core, the opposite is often discovered. Children with low tone typically don’t develop sufficient three-dimensional control in their core. Without the development of core control, asymmetries often remain and limit the development of core control. Often parents will tell us their kids will just randomly fall out of their seats in school (learn more about why here!).

Children with coordination disorders can vary in their vestibular responses. The vestibular system can be underactive, limiting the child’s ability to develop a strong sense of where they are in space, or the vestibular system can be oversensitive, leading to fear of movement. Low tone and hypermobility can lead to less information going from the joints and muscles (proprioception) and traveling to the brain to tell us where we are in space. Commonly, the visual system will work hard to make up for less teammates in the balance team.

Many children with coordination disorders will have difficulty getting their bodies stacked up with good alignment in order to turn their power on. These kids will often hold their bodies in an alignment that feeds into chest breathing, with their chest shifted up and their back appearing to be arched. This position and breathing pattern feeds into the child’s fight-or-flight system, or sympathetic nervous system, and gives them less ability to use their calming parasympathetic nervous system.

Children with coordination disorders struggle to put all of the pieces of their movement skills and sensory feedback together to be able to combine it with timing, sequencing, and multitasking. Being able to do this is demanded from a student, even in kindergarten! Because of this, beginning school is often the turning point for parents to seek out extra help for their child.

We move through daily life without consciously thinking about how we are moving our bodies. We can walk while daydreaming without bumping into a street sign, and we can sit in a chair without falling off while reading and writing. This may sound natural for many of us, but children with postural deficits use excessive energy, attention, and focus to fulfill all of the expectations they face each day. When our gears are synchronized, movement is automatic and children can focus on higher level skills, whether it is moving through the classroom without bumping into things or learning algebra. Filling in or strengthening these missing building blocks to develop a child’s sensory-motor system can build automaticity in order to multitask and to free the child up for higher cognitive skills. That’s where we can help!

Children with coordination disorders are often called lazy and told they’re not meeting their potential. People assume things will get better as the child gets older and that these are delays that will “catch up.” In the meantime, the child struggles with their self-worth, self-esteem, and mental health. As we said before, research supports that children do not grow out of these struggles, and that children with coordination challenges are typically more sedentary adults with increased risk of cardiovascular and mental health problems. 

Supporting a child’s ability to learn the skills they need in daily life is important, but we cannot fall into the work harder and try harder pit, without also working towards long-lasting change. We can help these children fill in those missing and weakened foundational skills. There are so many ways we can help these children meet their personal potential and protect their mental health, all at the same time. They are working so hard, day in and day out- let’s acknowledge that, support their efforts, and improve their building blocks so that they are building their houses with the strongest foundation as can be.

Top 10 Tips for Parents of Children with DCD

  1. Martial arts and swimming are individual sports that help improve body awareness, sensory processing, and balance. They are sensory rich and can be modified for individual differences.
  2. Explore movement in fun, social, and noncompetitive ways, such as hiking, yoga, and creative movement.
  3. Identify postural imbalances that may be limiting the development of core strength and learn ways to improve postural symmetry..
  4. Provide supports for sitting if the child has difficulty sitting upright, such as a yoga wedge or a towel roll.
  5. Encourage the development of timing using music and movement opportunities.
  6. Adapt the environment for success. Some adaptations include picture schedules, written lists, and typing instead of writing.
  7. Practice listening, looking, and moving at the same time. Play walking and looking games, such as “I spy,” while going for a walk.
  8. Model the use of feedback during play. For example, if you throw a ball and it lands short of the basketball hoop, say “I threw it too soft.” Discuss what you could do differently, try it and discuss whether it was successful. Bring awareness to this process.
  9. Backward chaining is a way to learn how to complete a task by working backwards from completion. The child first does the last step to complete the task. Next, they would try the last two steps. The child can build this until they are independent with the entire task.
  10. Team up with a PT or OT specialist to work on the foundations of movement so that practice is more effective and successful!

Getting Help

If you see your child is working harder than other kids to get through their daily activities, don’t wait to look for help. You also don’t need an official diagnosis to get help. Reach out to us at KidPT and come in for a Discovery Visit. We will listen to your concerns, do a screening of your child and their movement skills, and help you make a plan. We’re here for you!

References

  1. Zwicker JG, Suto M, Harris SR, Vlasakova N, Missiuna C. Developmental coordination disorder is more than a motor problem: children describe the impact of daily struggles on their quality of life. Brit J Occup Ther. 2017:030802261773504. 10.1177/0308022617735046.
  2. Sugden, D A, Chambers, M, & Utley, A. Leeds Consensus Statement 2006.
  3. Cousins M, Smyth MM. Developmental coordination impairments in adulthood. Hum Move Sci. 2003;22(4):433–459. doi: 10.1016/j.humov.2003.09.003.
  4. Wilmut K, Du W, Barnett AL. Navigating through apertures: perceptual judgements and actions of children with developmental coordination disorder. Dev Sci. 2017:20(6). doi: 10.1111/desc.12462.
  5. Missiuna C, Moll S, King G, Stewart D, Macdonald K. Life experiences of young adults who have coordination difficulties. Can J Occup Ther. 2008;75(3):157–166. doi: 10.1177/000841740807500307.
  6. Fitzpatrick DA, Watkinson EJ. The lived experience of physical awkwardness: adults’ retrospective views. Adapt Phys Act Q. 2003;20(3):279–297. doi: 10.1123/apaq.20.3.279.
  7. Lingam R, Jongmans MJ, Ellis M, Hunt LP, Golding J, Emond A. Mental health difficulties in children with developmental coordination disorder. Pediatrics. 2012;129: E882–91.
  8. Hill EL, Brown D. Mood impairments in adults previously diagnosed with developmental coordination disorder. J Ment Health. 2013;22:334–40.
  9. Harrowell I, Hollén L, Lingam R, Emond A. Mental health outcomes of developmental coordination disorder in late adolescence. Dev Med Child Neurol. 2017;59(9):973‐979. doi:10.1111/dmcn.13469.
  10. Cairney J, Hay J, Veldhuizen S, et al. Trajectories of cardiorespiratory fitness in children with and without developmental coordination disorder: a longitudinal analysis. Brit J Sport Med. 2011;45:1196-1201. 406/mojsm.2018.02.00054.