It’s hard to put into words the emotions that come with parenting a child with cerebral palsy. As a mom, I worried about everything – from whether he was eating enough to whether he’ll ever be able to live without pain. I can remember the feelings as fresh as if it were yesterday: the fear, the anxiety and the pressure of time as I navigated all the challenges that came with caring for a special needs child.
I spent so many days in a daze of exhaustion but I would not have changed it for anything. My son is my hero; I am and always will be so proud of him. If you’re a mom (or dad) of a special needs child, then I hope that in this article you’ll find comfort and support in knowing that you’re not alone.
Challenges of parenting a child with cerebral palsy
Worrying about their health and development
As a parent, it’s natural to worry about your child’s health and development. But when your child has cerebral palsy and you’re his caregiver, those worries can be amplified. Will my child be able to eat? Will they be able to walk? Will he be able to communicate with me? Will he be wheelchair-bound?
These are just some of the questions that may run through your mind (mine too) and once again I remind you, it is completely natural.
Trying to manage everything else in your life
In addition to worrying about your child’s health, you also have to juggle everything else in your life like work, family, friends, and other responsibilities. Every day is a battle, so you need to work on your courage and your wits. It can all start to feel like too much, trust me; I know this well but sometimes having that support structure is important for your sanity.
It can be tough to find a balance, but it’s important to TRY to surround yourself with people who can help take the load off even if for a moment (so you can just take a shower or enjoy a hot cup of tea).
However, the reverse is true too, if you can’t people, then don’t, I have been in situations when my son vomited on me and I tried to people please so I attended the function or event anyway (after a quick cleanup)but the judgments on my appearance were just not worth the effort.
Feeling isolated and alone
It’s common for parents of special needs children to feel isolated and alone as it can be hard to find others who understand what you’re going through. I felt this most times even when I wasn’t alone and I just realized that special needs parents choose to be alone because it is safer to not have to make plans that you may have to cancel.
I had so many friends before I had my son, yes motherhood does change friendships especially when your friends do not have kids. However, the dynamic is different when you have a child that has special needs, he gets sick so you have to cancel or reschedule or disrupt an event then eventually the people just stop inviting you to things. I know some people may not intentionally mean to make us feel a certain way but there are just some ways or things to say to a special needs mom or parent that will help.
There are also support groups and other resources available that can help you connect with other parents in similar situations but I feel from experience that having a small support structure is fine (like your immediate family if possible)especially if meeting new people gives you anxiety like it did me.
Though, I have to admit, it was nice to call up or even message another special needs parent just to share the load or off load somewhat, if only through words, it really did help.
Dealing with the financial challenges
Caring for a child with cerebral palsy can be expensive hey! Gosh, the bills just came in by the dozens every month like clockwork. There are medical bills, therapies, and other costs like nappies, and special milk feed (just to name a few) that can add up quickly and if you’re not able to work because you’re caring for your child full-time, it can be even more difficult.
I was fortunate to be able to depend on my hard-working husband but as my son got older the cost just kept growing so much that my husband was forced to go overseas for two years.
The monies he made over there helped alleviate so much financial strain but it came at a cost as I was left here to deal with three kiddies alone. That is the thing with special needs family, we are all in it together so there is always some kinda sacrifice to be made.
There are financial programs/government assistance available if you need it, but it can still be a struggle to even make the cut for some grants. I didn’t get a grant, I was denied thrice however, you should try to apply (nothing ventured, nothing gained right?) and ask a social worker to help.
Uncertainty about the future
When you have a child with cerebral palsy, there is uncertainty about the future. Will my child be able to grow into adulthood? What will their quality of life be like? In a case like mine, this uncertainty was a ticking time bomb through the years with nutrition and his weight but by the time my chubby, handsome son turned 16 years old, I was convinced we were over the worst of it.
I was so hopeful, I even made steps to start getting the equipment I would need to better care for him but not even 2months later (after his 16th birthday) we lost him.
It’s impossible to know for sure anyone’s mortality, hence it’s important to focus on the present and enjoy the time you have with your child.
What are the challenges of Cerebral Palsy?
There are a number of challenges that come with cerebral palsy and I faced most of them firsthand with my son, so I have a bit of insight into what these look like. Cerebral palsy, as you probably know at this point, is a form of brain damage so that damage will create physical, cognitive, and social challenges.
1. Physical challenges
Cerebral palsy can cause a variety of physical problems such as muscle weakness, stiffness, or spasticity. This can make it difficult to move around and may require the use of assistive devices such as wheelchairs, walkers, or braces.
2. Cognitive challenges
Cerebral palsy can also cause cognitive impairments and makes it difficult to learn new things, remember information, or process information correctly.
3. Social challenges
The combination of problems associated with cerebral palsy can make it difficult to interact with others which may lead to social isolation and a feeling of being different from peers.
These cerebral Palsy challenges can affect people in different ways: some may have mild challenges, while others may have more severe impairments. There is no one-size-fits-all when it comes to the challenges of cerebral palsy but sometimes, there are ways to improve their functionality.
How is Cerebral Palsy diagnosed in babies?
Cerebral palsy is usually diagnosed in infancy or early childhood and the condition is often discovered when a child begins to reach developmental milestones, such as sitting up, crawling, or walking. If a child is not reaching these milestones on time, or if they are having difficulty with motor skills, this may be a sign of cerebral palsy.
My son was diagnosed at 9 months and his cerebral palsy was so severe that his head was concaved on either side.
A doctor will typically perform a physical examination and order tests, such as imaging scans or electromyography (EMG), to confirm the diagnosis. In some cases, like my son, the doctor diagnosed him on sight and so started our journey with cerebral palsy.
There is no cure for cerebral palsy and we mourned the son he should have been then but embraced the amazing being that he was (CP and all.)
How soon can you tell if a baby has Cerebral Palsy?
There is no one answer to this question, as each child is different. Do babies with cerebral palsy kick their legs? Do babies with cerebral palsy have reflexes? Babies with cerebral palsy may have reflexes and kick their legs too strongly or too weakly and even may also have difficulty controlling their movements.
This can make it difficult for them to perform certain movements, such as rolling over, sitting up, or crawling. The fact remains that some children may be diagnosed with cerebral palsy shortly after birth, while others may not be diagnosed until they are a few years old.
Jaden could not lift his arms and had trouble holding his head up. I knew something was wrong but I convinced myself that he was just slower to grow and progress. His head was concaved on either side which, got more pronounced, and by 6 months; I knew he was not going to be a normal little boy.
My heart broke a little but I still contrived to feel grateful he had survived a traumatic birth; I felt having him was better than losing him.
Once his cerebral palsy diagnosis was made at 9 months, we joined a cerebral palsy unit that specialized in cerebral palsy in kids and that is when his therapies began. Early intervention is essential once your child is diagnosed. Yes I was there and I know denial well (in all its forms) but this step is about your child, not you.
I know what will go through your mind at this point… I’m a failure! Did I do something wrong? Was this somehow all my fault? This will be your new normal so deal with these bit by bit but make sure to do right by your little one to improve their quality of life, early intervention is pivotal.
If you suspect your child has cerebral palsy, it’s important to talk to your doctor as they will be able to perform a physical examination and order tests, if necessary, to confirm the diagnosis. Early intervention and therapy can help improve a child’s functioning and quality of life, so it’s important to seek medical help as soon as possible.
What is the life expectancy of a child with Cerebral Palsy?
The life expectancy of a child with cerebral palsy depends on the severity of the condition. Some children with milder forms of the condition may live relatively normal life spans, while those with more severe impairments may have shorter life expectancies.
This is a rough one for me to address as I still feel so raw from the loss of my son. My boy was severely disabled, wheelchair bound, and fed through a tube. He was such a beautiful, happy boy… yes, I know he suffered from stiff muscles and respiratory problems however, 16 years just seemed too young for him to die.
There were a few cases for me to call on to justify why I felt he had more time because I had heard kids with his CP severity can live till into their late 30s.
My closing words
Parenting any child can be a challenge, but when your child has special needs it can feel like you are constantly learning on the job. I have experienced a lot as a parent of a child with cerebral palsy, and through this blog, I hope to share some of what I have learned to help you navigate.
I would like to leave you with this: It is okay to have fears and concerns about parenting a cerebral palsy child. It is also okay to ask for help, whether that’s from friends, family, or professionals. No one has all the answers, but if you are feeling overwhelmed or just need someone to talk to, please reach out to me.
Let me know what your worries are, your concerns, or any questions (regardless of how silly you think it is). I would be happy to offer my support and advice based on my own experiences.
Thank you for reading this far.
I also wrote another article about how I cope with depression and anxiety.
Take care & God bless.
Charlie
Charlene is a published author/writer who has embarked on a personal journey, with the hope of providing guidance, support and advice to all who may need it.
Darling child,
The Lord was close to you through your journey with Jaden and He gave you the strength to care and love him UNCONDITIONALLY 💕
You are such a blessing and inspiration.
Bless your dear ❤️ heart
Thank you aunt Noleen. I appreciate your kind words.
Good morning Charlene, thank you for deciding to do this, I to am a special needs Mom. Danielle is 23 years old also diagnosed with Cerebral palsy from birth, yes there’s the denial, the depression, the challenges, the financial side, but I wouldn’t change a thing. God knew why I had to be chosen to take care of Danielle.
There are the fears , where I think is this the year she going to pass on? But then I think, Renee celebrate every day with Dani, don’t wait for her birthday, tomorrow is not promised. Having a child with cerebral palsy isolate you from so much, going out to Malls, holiday trips, functions that we invited to, we just feel so guilty of leaving her at home.
It affects your time and space with your husband, even if it’s just going out for Dinner. Yes we need that support constantly. I thank God daily for entrusting me to take care of Dani. It’s not easy at all, but I thank God for his grace, his mercy and his renewed strength.
Thank you Charlene for this page, where we can share and encourage each other. God bless 🤗🙏
Ah, Renee. Yes, the journey is rough but so worth the effort. All I can say is, treasure every moment. I am here if you need me.
My special friend 💕
I love you lots.
You were the absolute BEST MOM EVER to Jaden.
He loved and adored you so so much.
Our heavenly father could not have chosen a better mom to care and love him the way you did.
Always here for you
Xxxx
Thank you my friend. As always, your support is appreciated 🙂
Dear Charlene
I followed your Facebook posts from time to time, and all I can say is, God chose you, your husband and family to be the parents to this very special soul, Jaden.
You were, and still are an inspiration to so many people not only to parents with children with cerebral palsy. You have been an inspiration to me, with challenges faced, regardless of the type of challenge.
Continue walking with God, as He walks with you.
Blessings.
I am grateful to be able to be a vessel to be used to inspire. Thank you so much Porcia and may God be with you on your journey. Remember, you are not alone:)
Hey cuz
Sharing you life and experiences with Jaden is so unselfish of you, that is your nature. Your blog is so informative, any parent with a special needs child will appreciate your words. You gave your all to your son and he is always going to be smiling down on you.
Thank you cuz:) I appreciate your support
Absolutely inspiring and beautiful just like you always are Charlene… Yes so very unselfish and kind. God bless you and keep you and your family strong. You make Jayden even so much more proud of you 🙂
It is my fervent desire to make my angel proud so thank you for saying that:) Thank you so much for your kind words, Aunt Marlene
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