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Each day
WILL BE SPECIAL IN ITS OWN WAY

The Cerebral Palsy Journey

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

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. It may take time to understand their condition and adapt your daily routine.

 

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

Professionals from various disciplines are there to support and help you overcome obstacles. Remember you are not alone and there are many other caregivers in the same situation as yourself. Reaching out to other caregivers can also be a big source of help and support. 

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

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 your regular routine.

“ He can see, he can hear, he can articulate, he is actually quite bright and that is a journey in itself”

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.

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

 

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

Miriam, Yehoshua’s mum

 

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

 

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.

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


 

What can you do?

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

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.

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 may 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.

 

Who 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 the degree of your child’s cerebral palsy,1 and a multidisciplinary 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.

“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 paediatritian, or general practitioner (GP)

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

A physiotherapist

A physiotherapist 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 dietitian

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 and language therapist

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

We encourage you 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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