

- Call 908 543 4390
- Email
- Dr.Joni Redlich PT,DPT
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?
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:
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:
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.
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
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
Dance
Drama
Music
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:
Music:
https://www.theconnectiononline.org/com
References:
https://www.cerebralpalsy.org/information/activities/arts