My son and I
It’s hard to put into words the emotions that come with being parents of special needs; I specifically relate to 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 as a caregiver, worrying about how to care for a child with severe cerebral palsy, but it was my honor… I will never regret our time together.
My son was 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.
As a parent, it’s natural to worry about your child’s health and development. But when your child has special needs (in my case, cerebral palsy [1] ) AND you’re his caregiver, those worries can be amplified. Will my child be able to eat? Will they be able to walk or will he be wheelchair-bound? Will he be able to communicate with me?
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.
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. This life is a battlefield, 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 for a moment (so you can just take a shower or enjoy a hot cup of coffee).
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 (and smell) were just not worth the effort.
It’s common for parents of special needs children to feel isolated and alone, as it can be hard to find other parents of special needs 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 not to have to make plans that you may have to cancel.
However, being alone makes the anxiety and depression that much worse. 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 ya it happens all the same…yip it sucks. There are also support groups and other resources available that can help you connect, maybe online, or that will help you deal with all this.
I feel from my experience that the online thing sometimes works along with having a small support structure like your immediate family (if possible) especially if meeting new people gives anxiety, as it did me. I have to admit, it was nice to call up or even message another special needs parent just to share the load or offload somewhat, if only through words; it really did help (I’m here if you need me)
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 a 24/7 caregiver -caring for your child full-time (like I was)- 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 money he made over there helped alleviate so much financial strain, but it came at a GREAT cost as I was left here to deal with three kiddies all alone.
That is the thing with special needs families: 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.
As parents of special needs, 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; my son was underweight and struggled with bad gastric reflux (among other things), and he got dangerously thin.
Jaden needed a feeding tube inserted into his stomach, and with many trials & errors, it helped immensely. By the time my handsome son got chubby and 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), on the 11th March 2020, Jaden Carl Gallant passed away. Life is a gift, and it is impossible to predict death; that is why it’s important to focus on the present and enjoy the time you have with your child.
There are a number of challenges that come with cerebral palsy, which is a form of brain damage[2], and I faced most of them firsthand with my son, so I have a bit of insight into what these look like. My son had spastic quadriplegic cerebral palsy, and he was wheelchair-bound.
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. There may even be difficulties eating, or chewing and digesting foods.
Cerebral palsy can also cause cognitive impairments and make it difficult to learn new things, remember information, or process information correctly. My son got agitated a lot, especially as he got older, and we found that music was the only way to calm him. Jaden had his own tastes, though, and used to want to listen to what he wanted to listen to at any given moment.
I spent most of the day playing DJ HAHA He had his own headphones and had a CD player, then an iPod, & mp3 player for music.
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. We got stared at ALOT when we went out ANYWHERE; it did bother us at first, but I realised that people are curious. Often I would feel less annoyed if people came up to me instead of staring at us like we were from another planet.
Special needs are 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 a certain condition.
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, but then we embraced the amazing being that he was.
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 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 concave 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 at RED CROSS in Cape Town 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.
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. I guess feeling like a parent should never have to bury their child is something I will have to continue to deal with…grief is like that sometimes.
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 special needs child or even being a caregiver to a disabled family member. 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 an overwhelmed special needs parent 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.
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