Muscular Dystrophy Awareness Month 

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:

Join the fight. End Duchenne.
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Back to School Overwhelm: How to help your child transition to your new year

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.

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Back to School Doesn’t Have to Mean Back to Stress!

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.

The Big List of ADHD School Resources from ADDitude

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:

10 Things To Do BEFORE School Starts
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