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Mom ALWAYS knows best:

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/

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Is My Child Clumsy or Could it be Developmental Coordination Disorder?

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.
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Top Tips for the Sensory Savvy Parent

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 info@kidpt.com and schedule a FREE Discovery Visit with one of our therapists to learn more.

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Autistic Voices: In Their Own Words

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

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What Does Movement Have to Do with Autism?

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:

Autism in motion
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Arts for All!

Participation in the arts are a way for someone to express themselves. It creates a window into the soul and an escape all in one. Some turn to painting, drawing, music, drama, or dancing to find their sense of self or to relieve stress after a long day, and this is no different for kids and adults with Cerebral Palsy (CP). Taking part in the arts is a wonderful thing for children with CP to do, no matter their level of disability, and here’s why!


Self Expression Without Limits

The arts allow for a place to explore what you are thinking or feeling. Whether you are verbal or non-verbal, participation in an art form is a way to get your feelings out! Society often tries to put us in boxes that may make us feel limited. But when you are creating art, you get to make the rules. Bend the rules to work for you

Adaptability

With the free form nature of many arts programs there are no rules that have to be adjusted to make it work for your body. If your dancing includes, moving your head side to side to make your wheelchair turn to the right and the left, do it! If you need something to secure a paint brush to one of your hands or to your head to paint your beautiful picture, why not! It’s your masterpiece, so the environment can be set up to make creating your art that much easier.

Community OR Solitary Art

Many arts are performed in a group setting for those who love being social, like Drama. You can find your Drama, Dance, or Visual Arts community if that floats your boat. BUT the cool thing about the arts is many forms don’t have to be done in a group, they can be done alone too if you’d prefer to work that way.

Confidence Booster

For many kids and adults, taking part in the creation of something beautiful, or something they made themselves, is a huge confidence booster. When the right adaptations are in place to support each child or adult, either with motor or intellectual considerations, the child can make something by themselves (or with a little bit of teamwork if needed) and feel proud of themselves for doing so!

Types of Art

Visual Arts

  • Visual arts include painting, drawing, sculpture and photography, are likely to be the most common of all arts programs designed for people with disabilities.
  • The visual arts are easily modified. A child’s pointer finger, pencils, and brushes can all be adapted to fit their needs by instructors or parents. The most common forms of modifications are handles and grips on paint brushes, pencils and pens; easels that can be attached to a wheelchair or placed on a table. There are even attachments designed for the head in which the artist can manipulate the brush, just as is used on a pointer for the computer.
  • Photography can also be modified to meet various physical needs. Cameras can be attached to wheelchairs so they can remain stable while a person is shooting a photo. It might require some creative thinking, but if the photographer cannot use their fingers, cameras can be placed in such a way that a student can use their tongue to release the shutter.

Dance

  • When many people think of dance, they picture the ballerina trope, but that’s not all dance is, in fact, there are so many styles of dance! This includes modern, ballet, tap, and jazz. In the past years, dance has become so much more freeform than people think. With the dawn of modern dance and creative movement, movement can be whatever you want! The creation of movement is often left up to the dancer OR to the choreographer
  • Movement can be created in many ways. Students in wheelchairs can be pushed by a fellow dancer while they dance in their chair or other times can push themselves in a pattern as part of the choreography. Students can use their crutches or walkers to move, participate in floor mobility, and show off their specific mobility strengths. Choreographers can play into this as well, creating routines that maximize each dancer’s strengths.
  • As Dance is very aerobic, it also provides an outlet to work on mobility, strength, and develop flexibility. It can help those moving to stay fit and healthy. It can also help children with CP work on coordination and balance!

Drama

  • Theater programs for disabled actors provide opportunities to show off their talent. Often, modifications are made to shows that make the performance accessible to actors with disabilities. There are troupes of performers with disabilities as well as productions who participate in inclusive casting. 
  • Theater is often all about building community and putting yourself out there, and for many regardless of mobility status, gives actors the chance to put on a second skin. When you are acting as another person, you get to leave your own troubles behind and step into that person’s life and mind for a few hours. This can be a great escape for anyone, including children and adults with a disability.

Music

  • Music is another way that children and adults with CP can creatively express themselves and can be a great stress reliever. Music, like the other artistic forms discussed above, can be followed, but it can also be created! A child with CP can participate in a piece of music though percussive instruments, can learn to strum the strings of a guitar, and others too. 
  • Music therapy is a great outlet to explore as it not only allows for creative expression but also works on rhythm and timing, social skills, language, and mobility!

But where is there to go in NJ for my child with CP to participate in the arts? Check out these links to find out more!

Dance:

http://kayelynndance.com/chance-to-dance/

http://www.danceinnovations.org/dipf

http://kayelynndance.com/chance-to-dance/

http://www.danceinnovations.org/dipf

Theater:

https://papermill.org/access-for-all

Art: 

https://www.tasoc.org/

Music:

https://www.theconnectiononline.org/com

https://jamminjenn.com

References:

https://www.cerebralpalsy.org/information/activities/arts

https://www.cerebral-palsy-faq.org/art-exhibit-highlights-skills-of-children-with-cerebral-palsy.html#:~:text=Art%20therapy%20stimulates%20expression%20and,intelligibility%20due%20to%20cerebral%20palsy.

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Part 2: Childhood Vestibular Disorders

As discussed in The Sense of Balance there is an important sense that may not be part of our daily consciousness, but is integral to everything we do. The vestibular system plays a role in posture, balance and vision. Read more

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What is Pediatric Physical Therapy?

Pediatric Physical Therapy In Action

“My son can’t keep up with his twin.”

“My daughter is always tripping and gets frustrated.”

“We finally got answers as to why my child is delayed, but now what?”

Do these concerns sound familiar to you? Have you been worried about your child and wondering where you might find answers and help?  If so, you’ve come to the right place! Let’s start by answering the question-

What is a Pediatric Physical Therapist and Who Do They Help? 

Pediatric Physical therapists (PTs) are licensed health professionals who have specialized knowledge and experience in the unique aspects of working with children and their families to improve motor development, independence, fitness and active participation in the family and in the community. Pediatric PTs work with children from birth through adolescence and participate on teams with other specialists, including physicians, occupational therapists and speech therapists.

They work with children to improve their brain-body connection, balance, strength, body awareness, coordination, and movement skills from crawling and walking to jumping and hopping. Pediatric physical therapists work with children to improve their sensory awareness and motor abilities. Improvement these skills can have a far ranging impact on the child beyond the movement itself, such as improving confidence, success in school, and social interaction.

Pediatric physical therapy often looks like play, but that is part of the magic! Pediatric physical therapists know how to engage the child with fun, share the joy of movement and combine that with the science of the brain and body. All these pieces come together to stimulate to new skills that the child can use in daily life at home, at school and in the community. New skills means new confidence and new success!

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Dyspraxia: Conquering the Motor Challenges

Re-posted from OUR Journey Thru Autism

“I’m doing it! I’m doing it!” yells an exuberant 8 year-old boy as he rides away from me on his bike. This young boy has a diagnosis of autism spectrum disorder and dyspraxia and was so frightened to just sit on his bike with training wheels 4 months ago that he held on to me for dear life. Today he rides away from me on a two-wheeled bike on his own and tomorrow he will ride with his brother through the neighborhood. Read more

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Therapeutic Play With Playdough

Playdough can be a great tool to strengthen the hands and for imaginary play.  It can also be a great tool for increasing sensory awareness of the feet.  It can also be used to challenge balance in standing like in this video, or it can be done in sitting too.  Have fun trying it out!

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