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/

Happy Father’s Day to all of our amazing Kid PT Dads!

Dads know just how to bring a laugh and a giggle to the moment.

Check out these ideas to bring some movement fun to celebrate how much your kiddo loves you on Father’s Day!

First, hold each other’s hands. Can you lift one foot and hold it? Try taking turns closing your eyes and see if you can still both keep your balance. Add in singing a song together like the ABCs and see if you can balance all the way to Z.

Next, have Dad get into the Downward Dog position! How many times can the child crawl under, run around to the start, and climb under again! Let’s really challenge Dad with this one!

Finally, its time to fly! There are many fun ways to do this, from piggyback rides to holding the child and zooming around the house. My favorite way is for Dad to lie on his back his his hands and feet up. Dad puts his feet on the child’s belly, holds the child’s hands, and lifts them up! This is so much fun, just be careful. Be sure there is nothing nearby the child can fall on and only go as high as you can control.

What other movement adventures can you have today?

Did you go on a bike ride together, go on a hike or walk to the park?

Have a Happy Father’s Day!!!

There is so much nature and wonder to experience in a garden.  Here in the KidPT garden, we invite your kids to participate in shoveling the soil, transferring dirt with a wheelbarrow, jumping over the rows of vegetables, imagining they are earthworms tilling the soil, shading the garden as nearby trees, and invading the garden as clever rabbits. 

Shovel the Dirt

  1. Have your child stand on a pillow with a pile of cotton balls (or any small item) on the right and an empty bucket to the left
  2. Use a small beach shovel or kitchen spatula or tongs and have your child squat to pick up the balls and then transfer them into the bucket one at a time. 
  3. Then switch and place the cotton balls on the left and the bucket on the right

Wheelbarrow

Have your child assume the wheelbarrow position by pushing up through their hands on the ground and have a sibling or friend hold them at their knees. The child on the ground will walk forward on their hands while the other child follows them supporting their lower body in the air. Then have them switch roles. If the child’s back is arched (aka the stomach is dipping downwards towards the floor and is lower than the chest and ankles), make it easier by holding them closer to their trunk until they can keep their back straight. Too easy? Hold the child further from the trunk and as close to the ankles as they will tolerate.

Jump Over the Rows of Vegetables

Line up pillows or rolled up towels on the ground and have your child jump over them. Have them name the row of vegetables that they are jumping over as they jump. Switch it up by having them jump sideways and backwards too.

Earth Worm

Start in a standing position and have your child slowly lower their hands down to the ground in front of their feet. Then walk their hands forward as far as they can with their feet planted on the ground. Then walk their feet up towards their hands. Repeat as they squirm their way across the room. 

Tree Pose

Have your child stand on one leg and rest their other leg’s foot on their inner thigh. Once they gain their balance in this position, have them wave their arms in the wind just like a tree. Who can make a tree with the largest branches? Too hard? Instead, have your child place one foot on a step that is in front of them.

Rabbit Under the Fence

Set up the imaginary fence by extending a long piece of tape or string from one kitchen table leg to another ( or any stable surface) at about a foot height off the ground. Then have the kids take time to army crawl under the imaginary fence to the garden. 

What are your family’s favorite garden activities and plants to grow? 

Savvy parents know that every child has their own sensory preferences and things they avoid. Whether it is picky eating, not liking the seams in socks, or having a hard time sitting still because the child’s body has the wiggles, every child has their own sensory world. Every adult has their sensory preferences too, but we learn to manage our needs by taking walks when we need to wake up a bit, chewing gum to stay focussed, or shaking our foot while listening to a speech.

Every child will have their own personal sensory profile, but when is it time to get help. When sensory preferences are impacting daily life, that’s a good time to seek help from an occupational therapist or a physical therapist.

Below we’re going to introduce the difference sensory systems and give you some tips to start figuring out what sensory strategies will help your child.

Proprioceptive System

Kids who seek out rough play, jumping and/or crashing, or our kids who like to lie down on the ground a lot may need more input to this system.  It helps us to sense movement and organizes our bodies to help with coordination, body awareness and spatial awareness.

TRY activities that involve:

Vestibular System

Kids who appear to seek constant movement, are risk takers and like to be upside down may need more input to this system.  Some kids may look more sedentary or lethargic and may also need some vestibular activation! This is another movement sense, it is related to our head position in space, and gives our bodies information about balance and is closely related to our visual system. 

TRY activities that involve: 

Tactile Input

Kids who are constantly touching and fidgeting may need more input in this area.  Kids who are extra sensitive to seams or clothing, or avoid getting messy might be on the opposite side of  tactile processing.  It refers to our sense of touch, and can impact all areas of function from eating to walking to feeling the  nuances of toys and materials during self-care and play.

TRY activities that involve: 

Auditory Input

Kids who are constantly humming, yelling, and making other noises, they may need more auditory input than other children. Kids who zone out, seem to ignore you, or struggle to shift from one listening to another listening cue/instruction (or for example, respond to their name). 

TRY activities that involve: 

Visual Input

Kids who require more visual input may look closely at objects. They may seek out moving or spinning objects. They may have difficulty focusing on information presented visually.   On the other end, lights might be too bright or the child may struggle to adjust to lighting changes, or become overwhelmed incertain lighting, like fluorescents. 

TRY activities that involve: 

Olfactory and Oral Sensory Systems

Kids seeking out input to these systems may lick or smell objects like crayons or toys. Chewing also provides proprioceptive input, so kids may bite or chew on objects (think pencils or shirt collars).  May be averse to tastes or smell, picky eaters tend to be sensitive in this area. 

Links to some of our favorite sensory products:

Need some more help finding sensory savvy solutions for your child! Reach out to us at care@kidpt.com and schedule a FREE Discovery Visit with one of our therapists to learn more.

When learning about any topic, you can only learn so much from studying the academic literature. For example, if I want to understand Italy I can only learn so much from a textbook. In order to truly better understand Italy, It is vital that I actually go to Italy and experience first hand the climate, the weather, the people, the food, and the culture in varied settings and at different times of the year. Some things can’t be taught, they need to be experienced.

Why don’t we also do this with people with special needs and specifically autistic individuals

We may learn the physiology, the outward signs and symptoms, and theories on how to address and “treat” autistic people, but we will never truly understand autism by only relying on an outsider’s perspective. It is vital to listen to autistic voices in order to better understand, support them, and create an inclusive environment.

As autism is a spectrum and no two autistic people are the same, it is important to experience the perspective of a variety of people; from those who are non-verbal to those who have more asperger-like symptoms, those who have more physical limitations to those with more cognitive impairments,  and from the young to the old. With that in mind, we will be discussing two books: “Fall Down 7 Times and Get up 8” by Naoki Higashida and  “Look Me in the Eye: My life with Asperger’s” by John Elder Robison. 

Naoki Higashida wrote the book “The Reason I jump” at age 13 which has been translated from Japanese to over 30 languages. Through his works he has provided the world with the inner voice of a nonverbal child and now adult with severe autism. “Fall Down 7 Times, and Get Up 8” is an incredible book in which he shares wise insight, in depth descriptions of his thought processes, and also clever, creative writing. Naoki has a refreshing and enlightened outlook on life and his autistic diagnosis. He covers topics ranging from inexpressible gratitude for his family to the thought processes he uses to register what the sound of rain means to empathizing with his grandfather’s dementia. Despite the obstacles he faces as a nonverbal autistic individual, Naoki is determined to live with purpose and self love.   

John Elder Robison is an autistic man born in the late 1950’s who was undiagnosed until much later in life. His book is a captivating memoir of his extraordinary life as he makes it to the big time in the music industry, the corporate world, and then owning his own car service and dealership company while finding his niche in the world as a neurodiverse individual. He discusses the challenges of not knowing why he was different from other people and repeatedly claims that his childhood and early adulthood would have benefitted from a knowledge of his diagnosis. 

3 Takeaways from Both Books:

Autistics prefer to be alone: Debunked

Although it is a common trend for those with autism to isolate, that is more of a response to frustration than a desire to be alone. We all have experienced the pain of not fitting in and feeling uncomfortable in our skin and how all we wanted to do in that moment was run away. Those with autism, in self-preservation can do the same. The heart-breaking reality is that neurotypical people often grow out of this phase as they have more social tools available to them, while those on the autism spectrum, if not properly socialized and made welcome in a community, can find themselves isolated. Communication is a tool most people take for granted and underestimate. At the deepest levels of who we are, we crave to be known and to know others. It really is what life is about and autistic people are no exception. Communication is what makes that possible. John Elder says that he can’t speak for other autistics, but that he never wanted to be alone. He explains that due to repeated failure with attempts to connect with people, autistics are at risk to turn inwards and withdraw from others. Naoki describes wordlessness as a “soul crushing condition” and the loneliness is agony. But this loneliness can be interrupted as he goes on to explain that “if there is a single person who understands what it’s like for us, that’s solace enough to give us hope.” Naoki describes that just being in the presence of his family brings him comfort. He describes, “and from my face and reactions you wouldn’t know that I’m enjoying myself, but just watching my family being a family brings me great pleasure.”

Autistics want acceptance 

Naoki believes that he has his positive outlook on his autism because his parents were neither in denial of his autism or limited his potential because of it. They allowed him to dream, make choices, and respected his feelings. They treated him with the expectation that he was capable of more and provided him with relevant resources. They loved, dreamed with, and accepted him. It is natural to want the best for someone with autism and try to help them or even fix them. Naoki and John Elder agree that the deeper need is not to be fixed, it is to be loved and accepted for who they are, as they are. Naoki said, ““Love and only love makes whole the heart of those made desperate by loneliness.” Naoki’s advice is simple. Do as his parents did: “please lend us that support as we strive to live in society.” 

Autism is a communication disorder

Although someone with severe autism may not be able to show typical outward signs of understanding, it does not mean that they do not listen or have an inner voice that wants to communicate. Autism “may look like a severe cognitive impairment” but “it is a sensory processing and communicative impairment.” The old adage, don’t judge a book by its cover, is an important lesson to remember when spending time with someone with autism. Naoki gives us a sober insight that, “we are listening to everyone around us, & we hear you, you know.” He describes how demoralizing it can be when people speak about him as though he is not in the room. Everyone deserves to be treated with respect and dignity

Likewise, John Elder provides insight into why interactions and conversations with neurotypical people can be challenging and why his responses and actions can often be misinterpreted as socially inappropriate. He has a gifted way of describing his logical thought process which contributes to his difficulty reading social cues, engaging in small talk, and interpreting the intention behind the words of others. He explains that sometimes people have less compassion for him because there is no outward sign of his conversational handicap, but instead see him as arrogant or psychologically unstable. He suggests that with a deeper and broader understanding of the autism spectrum, the general public will be able to create a better and more inclusive environment for the neurodiverse.

To those of you reading this who communicate often with someone with autism, I want to encourage you. Yes, this is difficult, yes we will make mistakes, and yes, at times our frustration can get the best of us. But we need to remember that even if we don’t say or do the right thing all the time, the important thing is we love, respect, and accept autistic people for who they are. 

Referenced below are the books covered and others like it. 

References:

“Fall Down 7 Times, and Get Up 8.” Naoki Higashida, KA Yoshida, and David Mitchell

“Look Me in the Eye: My Life with Aspergers.” John Elder Robeson’s Book, 

Further Reading: 

“The Reason I Jump.” Naoki Higashida, David Mitchell, and Keiko Yoshida

“Carly’s Voice: Breaking through Autism.” Arthur and Carly Fleischmann

“How Can I talk if My Lips Don’t Move? Inside My Autistic Mind.” Tito Rajarshi Mukhopadhyay

“Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant.” Daniel Tammer

“Pretending to be Normal: Living with Asperger’s Syndrome.” Liane Holliday Willey

“Thinking in Pictures.” Temple Grandin

What does movement have to do with Autism, you ask? In short, EVERYTHING! Movement is the way we interact with our environment, one of the ways we make sense of all the information around us, and the way we turn our will into action! Even something that seems so based in the brain, like writing or typing our thoughts down, involves movement to actually get those thoughts onto paper or into a computer. 

But what if the wiring in your brain telling your body to move a certain way wasn’t communicating that information effectively?

Or what if the information you were getting from your environment, like the sights or feelings around you were coming in as too bright, too sharp, or not clear enough?

What if you couldn’t necessarily tell where your body was in relation to your environment or where your legs and arms were while walking around?

It would be so much harder for you to get around without knocking into things, to react to your environment in the safest way, move the way you wanted, and keep your stress level down while doing all of these things, right?!

These are just some of the small or large mountains that a person with Autism needs to climb on a daily basis to feel like their normal selves and to engage with our crazy world. Movement can be overwhelming and difficult to coordinate or extra movements may be necessary to feel where their bodies are in space. With the many lenses we can look through from a therapy perspective, we often land on the tie between Autism and movement and want to discuss the connection and why children with Autism may be inclined to move more and to move in their own individual way.

Movement to meet sensory needs: 

  • Often, neurotypical people take the ordered processing of environmental sensory input for granted. There are many ways that valuable information from the environment can be altered as the brain and body perceive it. It can not be perceived enough or perceived too intensely by the body and the brain. Below we are going to talk about multiple sensory systems that can be affected and how that may cause changes in movement.
  • Our vestibular system senses movement and contributes to our sense of balance. When someone does not perceive vestibular input strongly enough, they may partake in a lot of extra rocking or spinning movements. This may help them get a better sense of where their body is and how gravity is affecting them, so they don’t just feel like they are floating when they move.
  • Our proprioceptive system tells us where our joints and limbs are, like how bent your knee is when you are going to climb a stair or that your arms are resting by your sides when sitting on the couch. If this system is not giving enough information, it may take extra effort OR over reliance on another system, like the visual system, for someone to know where their legs are while climbing the stairs, while balancing, and while walking, to name a few examples. Not perceiving enough proprioceptive input can make someone confused about where their body is at all times. To help decrease their confusion, they may seek and need extra deep pressure input from their environment. This can come in the form of pressing on things, like desks, walls, unsteadiness during movement, looking for tight squeezes and hugs, and enjoying weighted items like weighted blankets.

Movement that is Difficult to Coordinate:

  • Neurotypical people often take the ability to produce clear, coordinated movement for granted too. For some people, kicking a ball is not as simple as the brain saying “okay kick” and then their leg executing that action. Sometimes the signals get misconstrued and there is extra movement of body parts, body parts do things together when they aren’t supposed to, or balance suddenly becomes more difficult. Some people have to think about what their standing leg is doing separate from what their kicking leg is doing, separate from what their upper body is doing. And oh yeah don’t forget about coordinating the movements of your eyeballs so you can see too! It’s not always as easy as one, two, three, and sometimes can feel like one, two, three, four, five, six, seven, eight, and so on!
  • Movement can become especially tricky to coordinate when the sensory information from the environment is perceived in a disordered way too. For example, you dodge a ball flying your way based on the fact that you see or hear that ball. You walk forward to get your cup of water from a table and know how far to walk, where the table is, how far to reach your arm, how wide the cup is, and how heavy the cup is once you pick it up. Now, Imagine if you couldn’t get your eyes to work together to see the ball coming your way… you might not move out of the way in time! OR imagine if you couldn’t feel how heavy the cup of water was and it was heavier than it felt to you… you might drop the cup! Putting all of these things together takes a lot of extra energy and effort and all the errors in perception often lead to errors in the execution of movement, even if the mover is trying their very best to do the right thing.
  • Not moving or moving slowly requires even more precise control of your movement! Many autistic children move fast and the observer may think that child has great movement control. Learn more about how that may not be true here.

Now add extra distractions of daily life to the Mix!

  • Another piece to the puzzle is the trickiness of dual tasking! Again, a neurotypical individual often takes dual tasking for granted. Dual tasking is what happens when someone walks and talks at the same time, or eats and watches a television show with ease. It gives us our ability to put one of the things we are doing on autopilot while focusing on something that takes a little bit more brain power.
  • When someone with Autism is trying to coordinate their movements as described above, it may take a decent amount of brain power. But then, a lot of the things in their environment demand a lot of attention, like the people around them or the sights, smells, sounds, and etc. So all of the thought energy that is needed to go toward their movement gets divided between movement and other things. This can create even more difficulty coordinating movement and may lead to overall disordered movement patterns as your child or adult moves through their everyday life. 

These are just some of the big reasons why movement can be tricky and discoordinated in autistic children and how it can impact os many areas of daily life, from getting dressed in the morning to social interaction. We know this is A LOT of information to take in, but this connection is an important one to make because when movement is hard, it makes coping with everyday life hard and stressful! If you feel like coordinating movement or movement with other daily tasks is sometimes tricky for your child, call (908) 543-4390 or visit our website at www.kidpt.com to schedule a FREE Discovery Visit today!

Extra reads:

As March is also Brain Injury Awareness Month, we will be discussing concussions. Did you know that concussions are actually mild traumatic brain injuries?

Let’s unpack what actually happens during a concussion. 

First of all, a concussion can result from rapid movement such as whiplash, a direct blow to the head/ face/ neck, or indirectly by a significant blow elsewhere in the body that is transmitted to the head. These forces put stress on the brain cells and can cause microdamage. Whenever there is damage to a part of the body, the body responds with inflammation, changes in blood flow, and changes in tissue chemistry. While this body response can help assist healing, it requires a high demand of energy and also reduces the amount of energy and nutrients that the brain has access to due to changes in blood supply. This places the brain in a vulnerable state as the brain has limited resources to function as it heals. 

Once the brain has experienced a concussion it is more vulnerable to repeated injury. Subsequent concussions often have longer lasting and more severe symptoms, so it is important to avoid environments and activities that could expose the child to a second concussion. Therefore, it is vital to reduce the demands on the brain to allow it to rest and heal and minimize the symptoms. A concussion can impact cognitive, physical, emotional, and proper sleep function. 

Some symptoms of impaired Cognitive function include difficulty concentrating, reduced short term memory, feeling in a fog, and feeling slowed down. Physical symptoms of a concussion include headaches, dizziness, fatigue, nausea, sensitivity to light, balance impairments, ringing in the ears, and blurred vision. Emotional impacts include depression, irritability, and lack of interest in favorite activities. These symptoms impact many aspects of daily life like the ability to complete classroom assignments, withstand environments with bright lights, participate in sports and recreational activities, and complete daily tasks at home. 

This is where Physical Therapists can help. We have expert understanding of the healing process of the body and have the tools to assess and treat the individual child’s impairments. 

Below are Five Common Ways that we as physical therapists get our clients with concussions back to doing the things they love and the activities necessary for success at school and at home. 

Educate On Strategies to Promote Rest and Healing

As mentioned above, there is a high energy demand on the brain after a concussion as it heals and there is less access to energy resources due to inflammation and blood vessel changes. This can last up to several weeks. It is vital to allow mental and physical rest so that the body’s resources can be used to attend to the damaged brain. Ways to promote rest are limiting screen time, schoolwork, and recreational activities. Once a child is ready to return to the classroom, there are strategies to adapt the environment to improve reading tolerance and participation in class with less onset of symptoms by using colored films, tinted eyewear, and incorporating a schedule for physical and mental rest throughout the day. 

Facilitate and Guide The Process to Return to Sports

Return to sport activities should be overseen and directed by an informed clinician in order to provide the right amount of rest vs challenge. The sporting environment has a high risk for a second and more severe concussion that can have lasting effects. Avoiding competitive sports and recreational activities is a good way to reduce the risk of repeated injury. Also, if a child is challenged too quickly, their symptoms may last longer as healing is delayed. On the other hand, it is important to provide the “just right” challenge to the young athlete to avoid unnecessary deconditioning. A physical therapist has the expertise to create a plan of care that provides the appropriate amount of progression to return the athlete to his/ her sport in the safest and most efficient manner possible.

Promote Sensory Integration

The normal function of the brain is interrupted with a concussion. This can impact how the brain interprets and integrates sensory information from the vestibular, auditory, visual, and proprioceptive systems. A typical brain automatically takes in all the information that your senses perceive, organizes it, and then helps you to respond appropriately. This complex process of integrating the sensory information provides the child with body awareness, understanding where they are positioned in space, postural control, regulation skills, depth perception, coordination of the eyes, and so much more all while they are simultaneously breathing, moving, multi-tasking, and processing a changing environment. When the brain connections that integrate the sensory information are delayed or interrupted, it can be disorienting and lead to visual and balance problems and sensitivities to varied sensory stimuli. A physical therapist will assess what sensory systems are impacted and will progress the interventions to return the child to unhindered play.

Address any Musculoskeletal Injuries Associated with the Concussion

Often the forces that cause a concussion also result in injury to the neck, spine, or other areas of the body. Sometimes injury and muscle tightness in the neck can even cause symptoms of headaches or dizziness and will benefit from therapeutic interventions to promote flexibility, stability, and strength to reduce these symptoms. Physical therapists are experts at identifying and treating these injuries alongside the concussion.

Restore Strength and Endurance

Since rest and lack of physical activity after a concussion is so important, most children will need to build back strength and cardiovascular endurance to return to the state they were before the concussion. Physical therapists are experts in exercise prescription and provide a plan of care to restore strength and endurance at a pace that meets the “Rest vs Challenge” criteria mentioned earlier.

This information is intended for educational purposes only. Please seek the advice from the medical team that manages your healthcare to manage your personal medical needs. 

https://www.choosept.com/guide/physical-therapy-guide-concussion

There are so many reasons why the Spider Cage is a powerful therapeutic tool to integrate into your child’s physical therapy program. If you worry about your child not having all possible opportunities to develop new movement skills, you should try out the Spider Cage during a trial session at our office to see firsthand what your child can do!

Why is the Spider Cage so powerful? Let’s look at 7 reasons that the Spider Cage gives children access to developing new skills and abilities, by supporting them to increase strength, balance, motor control, endurance and sensory processing, all while having sooooo much fun. Remember, fun is really important when it comes to children- if they’re having fun, then they’re LEARNING! Let’s get into those 7 reasons now.

  1. Exploration of New Skills

The Spider Cage is setup where the child wears a belt and the bungees connect to the belt. There are 8 bungees that can be attached to the belt with 2 on each corner.The child can be sitting, on hands and knees, standing, walking on a treadmill or moving between positions. The bungees in the Spider Cage provide support, but they’re also dynamic, so it is a different experience for a child that has been in a stander or a gait trainer. It is also different than having a parent or therapist helping. The child can try out new skills with just enough assist, but they are initiating the movement and responding to what worked and what didn’t work to learn from the experience.

In the video below, you can see the boy practicing standing up by himself without using his hands, which he can’t do outside of the Spider Cage. Over time the bungees can be lowered or only 4 bungees can be used to build more independence, which can then generalize to outside of the Spider Cage.

2. Confidence Building

Many children with movement delays or disabilities develop a learned helplessness from frequently experiencing things being difficult or impossible. Learned helplessness is when you have learned that you can’t do something, so you stop trying. It is an understandable reaction, but one we have to mindful of when guiding children to develop new skills and abilities. The Spider Cage is a fantastic tool for children to experience that they are capable of doing, with just the right support. This can be basic gross motor skills like sitting, standing and walking, or it can be more advanced skills, like hopping and balancing on dynamic surfaces.

The boy in the video initially needed hands on help to perform this motion. He didn’t try to initiate it on his own and needed help to complete the motion. After several times in the Spider Cage, he learned how to transition from hands and knees to standing with the help of the bungees alone. He was so proud of himself and this transferred to him helping more with transitions off the floor outside of the Spider Cage.

3. Safety to Try Higher Level Balance Skills

Children will limit attempts at new skills if they know their body isn’t going to be able to do it reliably and safely. Knowing they can’t fall, the Spider Cage gives the opportunity to try all sorts of challenging balance tasks without the risk of falling and hurting yourself. This way, the kids can work on those advanced skills, flood their brains with novelty and develop more advanced movement control.

In the video below, she challenges herself to move from standing to half kneel while standing on a bolster that rolls side to side. What a challenging task! This would be a risky thing to try holding maybe a trapeze overhead and would have allowed her to rely mostly on her arms, instead of her hips. Doing this activity in the Spider Cage let her work on a high level of hip and balance control and no rely on her arms for help.

4. Sensational Sensations

As we said before, the Spider Cage is a DYNAMIC place to be! The bungees provide resistance and assist to movement, giving intense proprioceptive/deep pressure input to the children’s bodies. All of the movement is very stimulating to the vestibular system in the inner ear as well. The Spider Cage is a great place to put together the postural system with the eyes, vestibular (inner ear), and proprioceptive (information from joints and muscles) to work on improving body awareness and regulation skills.

In this video you will see a boy doing intense jumping, having a BLAST, and regulating his system to do focussed work afterwards!

5. Hands Free Movement

Children who use crutches or walkers for mobility are always using their hands to help manage the rest of their bodies. The problem is that they then become limited in using their hands for other activities, such as carrying something, and they rely on using their arms to initiate movement, rather than using the pelvis, the cornerstone and powerhouse of our bodies.

In this video you’ll se a boy playing basketball where he typically needs a person to help or his hands on an assistive device to be able to do an activity like this.

6. Speed & Power

The Spider Cage gives the support a child needs to be able to work on moving at increased speeds than they could do outside of the cage. It also lets them work on their power with jumping and leaping. The dynamic assist on the bungees give greater access to new skills while decreasing risk of falls at the same time. This allows motor control, strength and endurance to build to support the use of increased power and speed outside of the cage in the future.

In this video, the boy walks 2mph, when he usually walks at a slow pace with crutches, he’s able to explore increased speed. You can see how proud he is at his acomplishment!

7. Play

Play is how babies and children learn! Play in the Spider Cage gives access to children with a limited play repertoire to develop more advanced play skills. Children can jump, kick a ball, throw a ball, and knock down towers. There are so many games children with limited play skills can try out in the Spider Cage!

In the first video below, the boy initially needed assistance from the therapist to stop on the target. With practice he was doing it all on his own and laughing so hard each time!

In the second video, we used the Spider Cage in a completely different way to make a ninja obstacle course with the bungees! The boy is working on his midrange postural control to move over and under while trying not to touch the bungees.

In the 3rd video the boy is playing t-ball! He has the opportunity to be hands free using the support of the bungees to play the game!

Blast off!!!
The ninja avoids the obstacles at all cost!!!
Baseball time!!!
Every kid deserves to knock over their therapist once in a while!!!