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/

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.

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:

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!!!

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.

When you think of a child with Attention Deficit Disorder you picture a child who can’t sit still, pay attention or follow directions. Maybe you picture a little boy bopping around the classroom or a little tazmanian devil running circles around his mom and dad. Read more