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The Cerebral Palsy Journey

David F.
David will discuss the emotional journey during and after diagnosis:
“
Small victories make it all worth while...”

They say it takes a village to raise a child. This is even truer for children with cerebral palsy (CP).


Each family who has a child with CP has a different story and a different journey.


We know that the time just before, during and after diagnosis can be a tough experience. You will need time to fully understand things and to adapt your daily routine.

But, with each passing day, you will gain experience in taking care of your child, which will reassure you and give you relief that you are providing him/her with the best care.

Along the way, professionals from various disciplines are here to support and help you overcome obstacles. Along the way, professionals from various disciplines are here to support and help you overcome obstacles. Reaching out to other caregivers can also be a big source of help and inspiration! Remember that you are not alone.

Although raising a child with CP comes with many challenges, overcoming them can provide immense strength, joy, tolerance and rewards as you and your child exceed initial expectations and as he/she grows.

This is a family journey, and some families find that encouraging sibling participation is a plus. Having the help of other family members can build support and better understanding. When adjusting to cerebral palsy, it's important to try to maintain as much normalcy as possible for everyone involved.

“
It is doable, and you will get there and you will have funny moments where your child looks like a dolphin”
“
The pros far outweigh the cons”

Miriam, Yehoshua’s mum




CP is usually diagnosed before the age of three

Cerebral palsy (CP) is a complex and unpredictable condition that is usually diagnosed during the first three years of life.

You may have seen some warning signs or felt that something was not quite right long before the official diagnosis came, or the diagnosis may have come as a complete shock following birth.

Whatever the case, time stops when your doctor informs you that your child has cerebral palsy.

 

“

I didn’t really believe it was happening, while it was happening"

Miriam, Yehoshua’s mum

 

We understand that hearing the diagnosis for the first time is a life-altering moment, usually accompanied by immense shock and disbelief.

Your mind may be flooded with questions and doubts about the future of your child and your own ability to take care of him/her.

You and your family will go through an emotional period and will need help and reassurance all along the way.

CP Diagnosis
Emotional Journey

 

Knowing what is cerebral palsy might not be not enough.

It is important to be patient with yourself, as accepting the diagnosis requires time and you may already be feeling overwhelmed with the amount of information given to you by your doctor.1

The more you know and understand, the more reassured you can feel that you are doing everything you can to take the best care of your child.


References:

  1. CP NOW, The Cerebral Palsy Tool Kit From Diagnosis to Understanding, 2015. Available at: https://cpnowfoundation.org/wp/wp-content/uploads/2015/11/CP-ToolKit.pdf

What can you do?

There are a few helpful recommendations that you can incorporate into your routine and throughout this new journey.

First and foremost, your child needs you to be his/her mother or father before anything else. The love and emotional support that you provide to your child is tremendous and is essential for his/her wellbeing.

Here are some helpful tips and reminders to keep in mind:1

What are the things that can help?

Keep a journal

Keep a journal that includes everything that you have learned about your child’s cerebral palsy and any questions you may have. This journal can be a valuable source of information during medical visits.

Work with your doctor

Work with your doctor to develop a personalised, holistic care plan for your child.

Check your health insurance

Go through the details of your health insurance plan and check what is covered by your local health system.

Seek support

Check for local support groups and reach out for help and guidance.

Plan activities

Plan fun activities with your child and family. Your child will enjoy being outside, surrounded by family and friends.

Stay positive

Stay positive and take baby steps. You don’t need to plan everything now. If you are feeling overwhelmed, don’t hesitate to ask for help.

Assist & Support

Never let CP define your child and try to continually encourage your child to embrace life.

Honor Accomplishments

Celebrate the achievements! No matter how small they are, every achievement counts.

 

References:

  1. National Information Center for Children and Youth with Disabilities, Parenting a Child with Special Needs, News Digest ND20,3rd edition, 2003. Available at: https://www.familyvoices.org/admin/work_caring/files/nd20.pdf

Who are the people that can help?

Following diagnosis, and all throughout your child’s unique cerebral palsy (CP) journey, a number of highly skilled healthcare professionals can take part in helping your child reach milestones.

In fact, a variety of care pathways exist, depending on your child’s cerebral palsy degree,1 and a holistic team can make a big difference in your child’s CP journey!

If you do not have access to a specialised clinic for children with CP, try to ask your general practitioner for referrals and ask to see them.

But, remember that you know your child best. Any daily observations you may have can help experts tailor care to your child’s specific needs, which only you truly know.

“

You know the ins and outs

You can help the team provide the best support for your child"

Coleen, Tierney’s mum

 

Your healthcare team could include:2

Your child’s paediatrician, or general practitioner

Your child’s paediatrician, or general practitioner, will be a core member of the team and will guide and support you throughout the journey.

A physio therapist

A physio therapist will evaluate muscle tone and can help your child gain strength for more independence.

An occupational therapist

An occupational therapist will work closely with you to help your child perform daily tasks, such as getting dressed or going from one place to another inside the house.

A paediatric nurse practitioner,or a registered nurse

A paediatric nurse practitioner,or a registered nurse, can be your main point of contact and will be a valuable resource for you in the day to day questions.

Feeding your child will require the help of several healthcare professionals:2

A paediatric gastroenterologist

A paediatric gastroenterologist will help you manage your child’s nutritional challenges and needs.

A nutritionist, or a dietitian

A nutritionist, or a dietitian, will be the expert you refer to for all of your child’s nutritional information and will help you plan the best nutritional plan for your child.

A speech therapist

A speech therapist will address your child’s ability to speak and communicate and can also assist with swallowing issues.

A respiratory therapist

A respiratory therapist will help you if your child has respiratory problems.

Feel free to communicate any questions, challenges or concerns you may face to your healthcare professionals so that they can help you find the best solutions.

 

References:

  1. National Institute for Health and Care Excellence, Cerebral Palsy: the diagnosis and management of cerebral palsy in children and young people. Available at: https://www.nice.org.uk/guidance/ng62/documents/cerebral-palsy-final-scope2
  2. NHS, Understanding enteral feeding. Available at: https://www.nestlehealthscience.us/mytubefeedingkid/understanding-enteral-feeding
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