Shifting Mindsets: from Physical to Behavioral Health
Many of us have spent years focused on our child’s physical health. From the day we first learned what CDH meant, we have grown to become our child’s nurse, therapist, advocate, and so much more! However, some will be diagnosed with other mental or behavioral health issues as they age. As a parent, shifting mindsets from physical to behavioral or mental health can be daunting. Just as we thought we were reaching the end of our CDH journey, we began a new one in a whole different light.
All Emotions are Valid!
Before we can even begin to help our children, we first need to take care of ourselves. With any new diagnosis, it is okay to be mad, sad, frustrated, etc. – allow yourself to feel all the emotions that come along with it. Be honest with yourself and the people around you about your feelings. Once you can acknowledge these emotions, you can begin to work with them and help your whole family navigate this new journey. You may want to talk with a therapist alone or as a family. The only way to help your child is to help yourself first. You can’t pour from an empty cup!
Therapies
So many of us start PT, OT, and speech with our child before we even leave the NICU. Starting early can make a huge difference for these sweet babies. So why would behavioral therapy be any different? Many parents who shared their child’s experience with various behavioral therapies with us said they only wish they had started sooner. Raising any child takes a village. Raising a medically complex child takes an even larger village – so adding another therapist to your village might be precisely what you both need. So many options are available to support your child through this phase of life, and there is no shame in getting them all the services they could need. At the end of this blog, you’ll find an extensive list of therapies that Tiny Hero families have recommended. The most frequently utilized therapies from Tiny Hero parents who shared their experiences for this blog were ABA, OT, and several alternative remedies such as weighted blankets or vests.
Support Groups
Just like the Tiny Hero CDH support group, many organizations have support groups for various diagnoses. Finding the best group for your family can help you navigate your child’s specific diagnosis in many ways. We compiled a list of a few groups you might find helpful below, allowing families that have been through this before to help you navigate your journey. Even reaching out to other CDH families who have similar diagnoses can make all the difference!
You are not alone!
Don’t just take our word for it – these Tiny Hero moms have been through similar situations and shared their experiences.
“Blindsided best describes how I felt when we received Kenna’s additional diagnoses. We were supposed to be going home the next day with our healthy baby girl, and instead, we were told she needed brain surgery. It was all terrifying and surreal. My best advice for anyone reading this is to remember that they are the same child today as they were yesterday. A new diagnosis doesn’t change anything. It gives you something to research and provides new avenues to help them reach their full potential.” ~Olivia
“It felt like we had seen the light at the end of the tunnel as Ryder’s CDH barely affected him at all anymore – then all of a sudden, that tunnel became twice as long, and there was no light to be seen. I was heartbroken that Ryder was going to have to fight hard to overcome this, too. He overcame prematurity, CDH, feeding tube dependency, and so much more. Now, we have entered a whole new journey in the behavioral and mental health world. We have no doubt that he will go far in life, and he will never let anything stop him – but I just wish things could come to him a little easier for once. My best advice for parents facing a secondary diagnosis is to be honest with your family and friends and look for parents who have been through the same or similar journeys. The frustration I felt at the beginning never went away, but it is becoming easier to manage as time goes on. Each day, we learn another way to help our whole family achieve more and stay strong. But without our village, a whole community of people who love and support our family, we would never have come this far. We are all in this together!” ~Leah
“Through all of this, what scared me the most was that just when we had started adjusting to the new normal of CDH and understanding what made our child tick, so to speak, we were tossed upside down and put back into the hurricane of medical testing and prodding all over again. We didn’t know what had happened to our happy child – suddenly, it was like all the lights went out, and we were left holding a shell of our former kid. Seeing his development suddenly halt was so scary and painful as if he was frozen in time.
My best advice for parents facing developmental changes or other diagnoses is that you know your child best!! Sometimes, the professionals are quick to dismiss and play the ‘wait and see’ game, but I still am adamant that early interventions are crucial to success. Document everything you see as much as you can. Take videos and pictures of your child often so you can show the professionals your child’s baseline with a comparison of developmental differences and delays. Don’t be afraid to seek out more than one opinion and also research the laws and loopholes of your state. For example, in our state, an autism diagnosis automatically qualifies a child for Medicaid, and that is huge in helping with therapy copays for speech, PT and OT. Also, don’t be afraid to try a program and adjust if you’re unhappy with the progress. There is no one program that is perfect for every child. Be active in making goals for your child’s IEP, and know you are NOT alone. It’s overwhelming at first, but when you can take a moment, realize you’ve already battled CDH – this is just another bump in the journey. You will come through it even stronger on the other side.” ~Amanda
“Almost every parent I know who gets the CDH diagnosis experiences a similar spiral of all the oncoming emotions. Many of us went from “expect your baby to pass following birth” to “there is hope” when we moved to a new city. When we brought him home, we were so proud that our baby had beaten the biggest hurdle he would ever face. What could be harder than CDH and ECMO? But, in our experience, it seemed every year brought a new diagnosis and a new challenge. I was always right by him. I’ve been his biggest cheerleader and advocate. So, when his pediatrician asked if anyone had talked with us about autism, I was shocked. No way! Not Landon. He was non-verbal, but he just needed more time. Sure enough, we got the behavioral test done, and he was, in fact, autistic. I had so many questions – what is his life going to look like? Can he live alone? Will he go to school? College? Get a job? A career? In Landon’s case, yes. He will do anything and everything he puts his mind to. Landon has been working hard with his speech and communication, and we are so proud of him! The way I see it, Landon was given no chance of survival in the beginning. The fact he is here is a win. His being autistic doesn’t change my love and admiration of him. My advice to parents is to take the wins. It might be a long road, but it’s worth it. I still haven’t heard “I love you” from him. But I know one day I will. Hold onto hope. Keep fighting and be their voice when they have none!” ~Elizabeth
The bottom line is that behavioral and mental health is a complex yet crucial part of everyone’s health and well-being. There are a variety of therapeutic approaches and medications that can help manage the symptoms your CDH child is experiencing. Work with your child’s doctor(s) to determine the most effective support plan for you and your child. Lean on your community to help yourself and your family navigate these changes.
Therapies and Resources:
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Applied Behavior Analysis (ABA) is one of the most widely used options for adults and children with behavioral health conditions. It refers to a series of techniques that use a reward system to encourage positive behaviors. There are several types of ABA, including:
Discrete trial training: This technique uses a series of trials to encourage step-by-step learning. Positive behaviors and answers are rewarded, while negative behaviors and mistakes are ignored.
Early intensive behavioral intervention: Children, generally under the age of five, work one-on-one with a therapist or in a small group. It’s usually done over the course of several years to help a child develop communication skills and reduce problematic behaviors, including aggression or self-harm.
Pivotal response training: This strategy is used in someone’s everyday environment to teach pivotal skills, such as the motivation to learn or initiate communication.
Verbal behavior intervention: A behavioral health therapist works with someone to help them understand why and how humans use language to communicate and get things they need.
Positive behavior support: This involves making environmental changes to the home or classroom in order to make good behavior feel more rewarding.
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Occupational therapy (OT) focuses on teaching children and adults the fundamental skills they need in everyday life to assist their behavioral health needs. Many with sensory issues find OT extremely beneficial for overcoming various difficulties. Many OTs use what is called sensory integration therapy. This typically involves exposing the child to sensory stimulation in a structured, repetitive way in hopes that, over time, the brain will adapt and allow them to process and react to sensations more efficiently. The therapist starts with simple activities and slowly graduates to more complex ones. Eventually, your child’s nervous system will become used to the stimulation they once struggled with and begin to respond appropriately. A few example activities they might have your child partake in are exploring sensory bins filled with small objects, rolling, sitting, or balancing on an exercise ball, using an electric toothbrush or walking barefoot.
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Speech therapy works to prevent, assess, diagnose, and treat speech, language, social communication, cognitive-communication, and swallowing disorders in children and adults. This can help your child improve how they communicate their thoughts and feelings with, hopefully, less frustration and tantrums. While working to increase their verbal skills, they are also learning how to improve articulation and strengthen oral-motor control. This can also help children expand their language skills, which are often decreased due to vestibular or auditory dysfunction.
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Social skills groups or training is a way for children to develop their social skills in a controlled and safe environment. For some people with behavioral struggles, interacting with others can be very difficult and can lead to many challenges over time. Someone participating in social skills groups can learn basic social skills, including carrying on a conversation, understanding humor, and reading emotional cues. While it’s generally used in children, it may also be effective for teenagers and young adults in their early 20s. For many kids, these groups feel more like camp or playtime, but they can learn a lot, all while having fun.
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Play therapy refers to a range of methods of capitalizing on children's natural urge to explore and harness it to meet and respond to their developmental and behavioral health needs. This can also prepare them for their mental health needs as they age.
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Cognitive Behavioral Therapy (CBT) is a type of talk therapy that can be effective in helping children and adults with various behavioral health conditions. During CBT sessions, people learn about the connections between feelings, thoughts, and behaviors. This may help identify the thoughts and feelings that trigger negative behaviors you hope to reduce or remove. CBT has been known to be particularly beneficial in helping people with behavioral struggles manage anxiety. It can also help them to better recognize emotions in others and cope better in social situations.
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Music therapy draws on the power of music in a therapeutic relationship to manage a range of behavioral health conditions and improve the child’s quality of life. In these sessions, your child may sing or play instruments, listen to music or discuss the meaning of lyrics. Music therapy can help improve social and communication skills, especially when paired with other educational and therapy interventions.
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Art therapy allows children with various behavioral health diagnoses to recognize and control their emotions in a structured situation. Many individuals with behavioral disorders struggle with impulse control and can be easily overstimulated. Art therapy helps participants identify trigger situations and develop coping mechanisms.
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Relationship Development Intervention (RDI) is a family-based, behavioral health treatment focusing on building social and emotional skills. Parents are trained as the primary therapists in most RDI programs. This newer therapy is based on the belief that the development of dynamic intelligence is the key to improving the quality of life for those with behavioral or sensory disorders.
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Neurofeedback is a type of biofeedback that focuses on the neuronal activity of the brain. This method is based on reward learning, where real-time feedback is provided to the child to reinforce desired brain activity or inhibit unfavorable activity patterns. The goal is to teach your child how to control their brain waves consciously in difficult situations.
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Families try countless alternative options for their child’s behavioral health. However, there is not much conclusive research backing up these methods, and it is unclear whether they are effective or safe. Always talk to your doctor before starting any alternative options. Some parents have shared these potential alternative options that have helped them:
Diet changes (many parents referenced gluten-free or casein-free diets)
Weighted blankets
Vibration platforms, vibrating teethers, etc.
Weighted or compression vests
Melatonin
A variety of vitamins and minerals intended to help with anxiety or inflammation, such as vitamin C, omega-3 fatty acids, vitamin B6 and magnesium
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There are hundreds, if not thousands, of support groups for various behavioral health conditions. Here are just a few we found with very active families to assist you through your journey.
SPD Parent Support: https://sensoryprocessingdisorderparentsupport.com/
Sensory Processing Disorder Parent Support (SPD): https://www.facebook.com/groups/SensorySPDParentSupport
Sensory Processing Disorder (SPD) Support: https://www.facebook.com/groups/sensoryplanet
Autism Parents Support Group: https://www.facebook.com/groups/autismparenting
AUTISM & ADHD Parents Support Group: https://www.facebook.com/groups/2085883038305651
Parents of children with O.D.D/ADHD/ADD/ANXIETY/OCD/AUTISM/PANDAS: https://www.facebook.com/groups/kourage4kids
Special Needs Parents Support & Discussion Group: https://www.facebook.com/groups/1855573214536750
Support for children with special educational needs and disabilities: https://www.facebook.com/groups/538540446620062
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These are just a few behavioral health organizations we found with tons of resources to assist you through your journey. There are so many more not listed here.
National Autism Association (https://nationalautismassociation.org/)
National Association for Behavioral Healthcare (https://www.nabh.org/)
Autism Speaks (autismspeaks.org)
Autism Parenting Magazine (autismparentingmagazine.com)
Autism Navigator (https://autismnavigator.com/family-resources/)
STAR Institute: Sensory Processing: https://sensoryhealth.org/
SPD Foundation: https://www.spdfoundation.net/
Attention Deficit Disorder Association: https://add.org/
The American Academy of Child and Adolescent Psychiatry: https://www.aacap.org/AACAP/Families_Youth/Resource_Centers/AACAP/Families_and_Youth/Resource_Centers/Home.aspx?hkey=e10a850f-591a-4a5e-b8ce-fff68fb8e017
Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) https://chadd.org/
International OCD Foundation: https://iocdf.org/
Child and Adolescent Psychiatrist Finder: https://www.aacap.org/AACAP/Families_and_Youth/Resources/CAP_Finder.aspx
There are so many therapy options, organizations and groups specific to every diagnosis. If you would like us to add something that has helped you to this list below, please let us know: Stories@TinyHero.org