I recently spoke on a parents panel at a local university, speaking to students in an OT program about working with an OT and having a child with special needs.
I’d like to share the following, as it pertains to pediatric occupational therapy.
The Early Intervention (EI) program and our team of therapists have changed our lives.
When our son was diagnosed in utero, with a rare disorder called Osteogenesis Imperfecta (OI), we were given an unknown outcome, and offered little support, resources or hope.
It could not be determined by our medical team whether our son would survive birth, pass shortly after, or overcome the physical and initial medical challenges that this diagnosis presents.
After he was born, with 26+ fractures in various stages of healing, we were guided to a social worker through our state’s Early Intervention (EI) Program.
She came to our home, when he was about a month old, and did an initial evaluation.
Since our son’s diagnosis is considered a life-limiting condition, we qualified for EI and were assigned our therapists.
Were were fortunate enough to receive physical therapy (PT), occupational therapy (OT) and nutrition services, with a registered dietician.
When our therapists came to our home, they were met with a desperate, hormonal, sleep-deprived, blindly optimistic mother of four.
….. and they changed the trajectory of our story.
OI and PT
There are two major factors that contribute to the positive outcome of a baby with OI. One of them is treatment. The other factor is physical therapy.
Exercise is important in order to strengthen muscles, which in turn protect bones. Movement is important to support strong bone growth.
We were advised through a local friend, fellow OI mom and pediatric PT, as well as our online support group of other OI parents, to start PT as soon as possible.
This relationship continued to be monumental in the positive progress our son would make and continue to make.
OI and OT
For us, our OT was life-saving because her expertise in feeding far outweighed the expertise of our pediatrician and local medical team at the time.
OI is a form of Dwarfism. In addition to slow bone growth, babies with OI eat very little compared to babies who are considered typical.
This can be often misdiagnosed as failure to thrive. Generally, it makes pediatricians nervous when a child falls off of the growth chart.
Babies with OI grow at their own pace. Any weight gain is fantastic!
Over feeding an infant with OI can be detrimental, as it can put unneccessary weight on their already fragile lungs, causing aspiration and respiratory distress.
Oftentimes, medical professionals, who have little to no experience with an infant with OI (or worse, they are over-confident and unwilling to do further research or seek out OI specialists), put an NG tube in a newborn with OI and overfeed them.
It’s imperative for parents to advocate for their child, do their own research, and connect with other OI families and specialists.
Unfortunately, this isn’t always the case and infants and children are mistreated at the hands of medical professionals.
Thankfully, we have a pediatrician who specializes in care for children with complex needs, and she was open and willing to listen to the research we provided, and openly acknowledged her lack of experience with a severe OI infant.
She has always advocated for our son and for specialized care. She is a true warrior for our babies and it’s my hope other pediatricians follow suite.
When it came to feeding, she advised us to work with our OT, and this allowed her take a step back and not worry, essentially, about his growth. He would follow his own, little, unique curve, and as long as he was having wet + diapers, and remaining healthy, we were good to go.
Our OT confirmed our son had low muscle tone (a characteristic of OI), and this resulted in a weak suck.
Low milk intake was because of both low muscle tone and the body’s way of regulating how many calories it needed…. too many would prove a fracture risk, and too little would not allow the body to thrive. It’s my belief, just as our son was born into this world, that his body is intelligent, and it would self-regulate intake.
The techniques and strategies provided to us by our OT, were specific to low muscle tone, with sensitivity to his fragile bones.
The relationship we continue to have and the value she has offered us is beyond words.
It is my hope, that as an OT student, you feel the impact you are destined to have on this world.
9 Things I’d Like to Share with an OT Student
1.) You are doing important work.
You are not just touching the children that you work with, but the families and communities that surround them. The compassion, care and expertise that you come to families with, may very well be the only time they receive that moment of empathy, direction and positive attitude.
2.) Value the information you are learning, and will inevitably teach
There are so many things I have learned from our OT, that I believe everyone can benefit from.
Vestibular Therapy, for example, is a practice we have used to help our son develop his inner ear. Babies and children with OI do not have a natural development of movement, therefore can lack balance and sensory input activity.
Simple, safe practices like spinning and swinging, can help our children develop these necessary skills that set the foundation for their movement and independent mobility success.
The principles of vestibular therapy are ones that we as adults can benefit from! Getting dizzy as we get older doesn’t have to continue, and learning about the vestibular system and exercises to aid in the process of balance can greatly impact our lives.
Do not be afraid to share this information with parents, and if parents share their own pain with you, if you can help them from an occupation therapy perspective, please do!
You never know who you can touch with information of healing and self-help…. the tools and resources to you provided as an occupational therapist can give even just a mustard seed of hope and direction for a person who otherwise is definitely NOT getting this information from the PCP, surgeon or other person responsible for their medical care.
It’s understandable that you don’t need to give medical advice, but please be confident in the practice of OT and the expertise you have to offer that is exclusive to this practice. There are many practical uses for your knowledge and it’s important to remember:
“If you don’t bring it, we don’t get it.” – Rha Goddess
So have confidence in your expertise and share away!!
3.) Research, research, research and be willing to know what you don’t know
“The only true wisdom is in knowing you know nothing.” ~Socrates, courtesy of Bill and Ted’s Excellent Adventure
If you are presented with a rare diagnosis, research as much as possible. For many rare conditions, there may be very little written about it. And if there is anything written about it, the accuracy of it may be questionable.
Even with resources available about a rare condition, every.child.is.different.
What works for one, will not work for another.
In our OI community, one warning for parents is when their therapist tells them, “Oh yes, I’ve worked with a child with OI before!”….
…. the reason this can be disastrous is because an over-confident therapist, like an over-confident, under-experienced doctor, can end up doing more harm than good for a child with a rare condition.
Some infants and children with OI, can tolerate certain activities, and others, with the exact same diagnosis, cannot.
The worse case scenario, for a child with OI, is to break or weaken a bone at the hands of a well-meaning therapist or doctor.
I have heard many stories of OI infants and children, breaking bones at the hands of an x-ray technician or nurse, who doesn’t know how fragile the bones of an OI child are.
With OI, bones can break for no reason. I advise anyone working with my son that I will do all his moving… no one is to touch him but me.
Some parents will be advocates for their children, and others will not.
It’s important for a therapist to be an advocate for that child.
With rare disorders, research as much as possible, and lean on your resources when necessary. Even if it’s for another perspective or additional support, doing your homework will not only speak volumes to your families, but it will 100% benefit your child and that is an honorable, priceless gift.
4.) Ask the Parent What is Important to Them
From our experience, this conversation is part of the requirements for our therapy benefits. It can feel routine for parents to sit down with a case worker and discuss short and long-term goals. Sometimes the goal is just to make it through the day.
Something that is important to you, as an OT, may not be important to your client. For us, our goals were clear…. movement and supporting our son to reach physical and developmental milestones, as well as strengthen his mouth muscles so he would continue to eat enough to not lose weight.
Meet your goals as an OT, with the goals of families. When a family sees bathtime, offer them insight of water therapy opportunities. When a family sees feeding and low muscle tone, offer them the idea that sucking on a bottle is actually strengthening their mouth muscles, and a pacifier can be used as an exercise program.
I would imagine that there would also be times when you can ease their fears, and gently expand the vision and potential they see for their child. When parents are in a dark place about a diagnosis, it’s possible they will find difficulty in looking beyond today. It may be appropriate for you to be that beacon of hope and inspiration, sharing your experience of other children who have come before with a positive prognosis.
5.) Ask the Parent, but Do Not Rely On the Parent
Unless they have a background in therapy, parents have absolutely no idea all the wisdom and information that dwells in the space of occupational therapy.
One of the most confusing things I hear from other OI families is that their therapist comes to their home for the first time, or subsequent times, and asks them, “So, what do you want to work on?”
Uh…..
Parents who have a child with a rare disorder, have absolutely no idea what they want to work on!
They don’t even know where to start.
Parents flood our online Facebook group with questions about what they should be working on from a PT/OT perspective. Some parents don’t know the value of these services and may or may not even begin them long after they should.
For those parents who know they need PT and OT, they may actually not be able to articulate what their goals are or know how to communicate what they should be working on. They know a few things, mixed with their own mental and emotional evaluation of the experience, so it’s important for you to be able to receive what they say to you and then offer practical, reasonable goals and strategies.
For our OI support group online, a parent who wants to know everything about PT and OT for their child, has access to it through the group. All parents, just like children, are different, and at different places in their journeys, at different times.
The more research you can do, the better.
Reach out to any foundation or organization you can online, and contact a specialist in your child’s diagnosis. This is something the parent can do for you, but if they don’t, it’s only helpful for you to speak directly to someone who has more experience with the condition than you do.
The OI Foundation has a website and there are many specialists listed on their site that would be happy to discuss with any professional who wants to know more about OI.
There may be online resources like this for other conditions and it would only benefit everyone to have this perspective.
5.) Meet the Child Where They Are
In so many ways!
I love the EI program because our therapists come to our home! It’s absolutely incredible!
Meet a child where they are, meaning connect your OT information with what you can do now to support them.
First do no harm, and then see where you can match your expertise with the current situation. What I love about our therapists is their ability to modify every single activity to our son.
With fragile bones, everything has to be modified, but they always look at what we want to achieve and then any small action we can take to help assist getting there. Oftentimes they would say, “With a child without OI, I would recommend this. With Niko, I won’t do that! But here’s what we can do….”
Water therapy, for one, is a big aid for babies and children with OI. It offers the opportunity to build muscle in a way that reduces fracture risk. It’s gentle on the muscles and bones and offers free range of motion, which is what we are looking for.
Both our PT and OT were helpful in assisting me in the bath tub with Niko. We would do water therapy in the tub, and they were always helpful in researching and considering floating devices, toys, or other aids to assist in our water therapy goals.
Both of our therapists also spent time with us at our community pool last summer! We met there and did water therapy for our sessions. It was awesome. If you’re able to accommodate families in this way, please do. It not only keeps things exciting, but it meets the needs of the child, who may otherwise not have this experience.
Even our dietician has met us at different locations, the Children’s Museum being one and our local pool being another. She has suggested that she can meet us at the park if we want to, or spend our time together going for a walk if it’s nice outside.
We are incredibly fortunate to have our team and work with an agency that values these relationships.
6.) Be Curious
This is probably something you hear a lot. Your curiosity will lead you to the families you are meant to serve and the cases you are meant to have. It will offer you wisdom into your career and life path, and assure you that your journey is unfolding exactly as it should be.
Your curiosity will touch many lives and change the world around you.
Your curiosity about a child, their diagnosis, progress and outcome will have ripple effects throughout the cosmos. The information, guidance and service you offer families will touch their lives, and trickle into their community of others who share the same diagnosis.
Using OT tools to teach parents how to help their children, will inspire them to be teachers to others. The knowledge you give them, through your curiosity, will empower them to share their success, experience and wisdom with others.
Some parents will not seem touched by your authenticity.
And others, will crack open before your very eyes…. you will see the light go off and witness the transformation of both their purpose and yours.
For rare conditions, and those not so rare….. there is still much research to be done. You are on the forefront of an area that has the potential to help so many, and positively influence generations to come.
Know that your curiosity into a family or a diagnosis, can guide you to a leadership role within that community.
If you find something that you’re passionate about, find other like-minded professionals who will work with you to raise awareness and provide accurate information to your industry and the medical community at large.
The world needs more people who are awake and ready…. if you feel called to learn more about something… do it… and then write about it… and share it…. share it with colleagues, with medical professionals, and others who share a similiar mind set and vision about the world.
“The world needs that special gift that only you have.” – Marie Forleo
7.) Use technology
Videos and photos fill my smartphone, documenting the moments that my son was in fact growing, moving, smiling, communicating and making progress.
I was overjoyed every time I sent these photos and videos to our therapists.
“Look! This is what he’s doing!”
I also wanted to document his progress so we could remember what to work on, and for reflection.
Our therapists have always been receptive to these messages.
Your boundaries when it comes to texting and messaging are for you to decide, and I am incredibly thankful that our therapists have opened our relationship to a deeper level of communication.
They have a genuine concern and care for my son and our family and it shows.
8.) Attention to Siblings
I have always heard how important it is to spend extra time with and attention on your children who do not have special needs. The president of an organization called Orange Socks, who inspires life despite diagnosis, shared with me the phenomenon that can occur with siblings of special needs children: The Glass Child …. this refers to a sibling of a special needs child, who oftentimes gets looked through because their sibling takes up much of a parent’s time and energy.
Our OT regularly reminds me, as she has a special needs child of her own, the importance of taking time to make sure each of my children feel love and supported, and that it’s not “all about” their brother.
It does take time and effort, not unlike cultivating a relationship that is not in a special needs family, but the awareness that it’s important is meaningful and helpful.
Our therapists always give attention to our daughter who is regularly at our son’s sessions. If we are spinning Niko during one of his sessions, we spin my daughter!
She thrives on vestibular therapy, too!
Our OT regularly asks about our other children, how they are doing, and she has helped us with a few things that have come up with them. For example, my older son, who is in third grade, benefits from sensory activities and vestibular therapy, like spinning, resistance activities and a sensory necklace for chewing.
For years raising my first three children, I didn’t realize that much of their “behavioral problems” could be helped with these tools and strategies provided by our OT. It’s incredible information and I believe all parents need to know how to better support their children’s natural development. It is my hope and desire that pediatricians will actually refer parents to websites that offer this information in ways everyone can understand, like www.otmama.com.
8.) Use Anecdotal Stories
I always find it helpful when our therapists share stories about their experience and working with other families. It makes me feel empowered to know I am not alone and that we, too, will get through this. Also, it oftentimes put things into perspective because there is always someone going through something more difficult than you are.
9.) Special Needs Families are Indeed Special
The most loving, compassionate, helpful, caring, smart, resiliant, and brave people I have met on this journey are those who we share our special bond.
Parents and families who are care takers for a child who came into this world without the typical genes, development and behaviors….. are the most resilient, couragous, exceptional human beings I have ever met.
Love is unconditional. Dedication is prominent.
Courage is necessary.
We do not walk this path alone and the people I have met are very special. I pray you have the opportunity to embrace this experience and be inspired by special needs families as I have felt touched and inspired by my now life-long friends.
I hope a few of these messages have served you, please reach out if you have any comments, questions or further topics of discussion!
Thank you for reading and have a wonderful week!
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Diagnosis during pregnancy 