“When you’re going to have a baby it is like planning a fabulous vacation trip to Italy, you buy the guide books, perhaps learn some handy phrases; when the day finally comes and your holiday is here; you’re so excited. Then the pilot says to you, Welcome to Holland.”
Welcome to Holland is a story written to mirror raising a child with a disability, the story explains that although; it is not what you’ve planned; Holland is not a bad place, it just as nice as Italy except different” I have never been a parent of a child with a disability, so I cannot speak about what being “welcomed to Holland” is like, but I can tell you about life in Holland.
I can tell you about Cerebral Palsy, about what it is, what it means and in doing that, I hope for you to see what it is like to live in Holland, because I love it here.
Before I tell you about life in Holland, I should probably tell you about the other people that live there, all those with Cerebral Palsy are very different, I cannot speak for anyones journey, experiences or story except my own. In telling you my story, I hope to open the lines of education and communication, I hope to Welcome you to Holland.
Cerebral Palsy is brain injury, which is why those with the condition are all very different, I have never found an individual who despite having the same diagnosis as me; experiences it the same way as me. The disability can present both physically and cognitively; it is all dependant on where the brain injury is – what area of the brain it occurs in. As well as how much damage has been caused. The occurrence of Cerebral Palsy most commonly happens in the womb, as a result of premature birth or other circumstances; it can also occur as a result of traumatic births, or more rarely it can occur, if within the first two years of life a child suffers an accident, resulting in head injury when the brain is still developing.
I was born ten weeks early and my position in the womb meant that I was not receiving optimum nutrients by the placenta, there were many circumstances which could have contributed to my diagnosis. I have never put much thought into why it occurred; I do not believe there is a point in questioning the diagnosis with negativity. After premature birth, I had initial brain scans which did not show any damage. It is important to understand, that many babies are born early without physical or cognitive delays as a result.
Long story short, I was taken home after weeks in an incubator. It was during my first year of life, that Cerebral Palsy manifested itself in physical ways. Cerebral palsy and its presentation is again very different from person to person.
It is identified or described by
- The distribution of muscles and limbs effected; a child could have just one arm or one leg effected , primary damage in just the lower limbs and abdomen damage on one side of the body or their entire body including their abdomen, face and mouth as well as their limbs. Could be affected; Again it comes back to where and how severe the damage on the brain is.
- The patterns and movements of a child with Cerebral Palsy are also of importance with diagnosis, children with a spastic muscle pattern, have very stiff or tight muscles; a child who is identified with a dyskinetic muscle tone participate in involuntary movements, or postures; the last type of muscle pattern is also the least common; an ataxic pattern, means a child presents as shaky and has tremors consistently. It is incredibly important to understand that each person is effected differently and most children with C.P do present mixtures of symptoms from different muscle patterns or “categories” of the disability.
So if we know it is brain injury and we know the different types and “symptoms” what does that mean exactly?
Imagine you’re running, for every step you take your brain is sending a message to your legs; telling them to expand and contract the muscles needed for you to keep running, at the same time your arms are moving working to aid your speed as you run, your brain is sending messages to your arms telling them also to move. As the brain is sending these messages; you’re also focusing on the music playing on your iPod, your brain sends another message; allowing you to listen and comprehend. For those without C.P the brain sends these messages fluidly, and without confusion. The brain communicates, with the legs, arms and ears; allowing runners to fall into their “stride”.
There is no such thing as a “runners stride” for those with Cerebral Palsy. The best way to think of it is to think of wires running from your brain to each of your muscles or body parts, these wires transport the messages from the brain to the body part in use, for those with C.P our wires do not run individually, they may get tangled with others, or cross together meaning that some body parts are unable to be isolated; or may move in a different way; a person with C.P is still able to command and communicate with each of their body parts, they just do it in a different way. Those with C.P as a result of these factors, often experience lack of co-ordination and a lot of their movements are not fluid, rather done with tightness or degrees of difficulty. Each person with C.P will have a degree of muscle tone, because of the damaged pathways in the brain; the muscle tone will present differently person to person, but it will always be present.
For me, I cannot do anything with my hands without my legs moving, because the two parts of my body, do not get the correct messages “fired” to them by the neutrons in my brain. I also struggle with fine motor skills, like doing up buttons. To carry out activities with my hands, I must fight against my legs and their tone, I find it very hard to isolate muscle movements, this is the manifestation of my muscle tone; it is unique to me.
Cerebral Palsy will always be a condition which effects the entire body, caused from damage in the brain, just because I use a wheelchair; it does not mean the damage is limited to my legs, it simply means that my legs took the bulk of brain damage, but my entire body will always have muscle tone present, in different degrees. Our entire body works as one unit. Rather than individual units working together as one.
C.P is non-progressive and non-curable, however a person in my position is not confined to a wheelchair by any means, therapy and surgery work to help us thrive in the face of disability, I will lead a life with the same prospects as any other person, and I am very lucky to have this be a fact. It has and always will be challenging to work toward a self sufficient life, however it is a quest many of us take on because completing therapy, having surgery, building walking into our lives and having a resilient spirit has given us the opportunity to do so. All therapy works to keep children in the best alignment possible and on their feet, therapy for kids with C.P is not a choice, it is a necessity. It is understood that for me to lead the future I aspire, I must stay on my feet. Which is why we have done the surgeries and therapy, it is all in the name of my own aspirations for the future.
Walking is not something that has ever come easy to me, walking takes effort and focus; when I walk that is all I do. To carry out activities, like make tea; I could not be standing or in my walker, for independence I must use a wheelchair – that is again unique to me. But something my surgeon has said since I was little is “if you can walk inside the house, with your walker, if you can transfer and have a stable base on your feet you can travel the world” and so just like you might go to the gym in the morning on schedule, so to is my walking scheduled in.
Cerebral Palsy, or being in a wheelchair might be confronting for a lot of people, you might be thinking or wondering how it is managed; but the truth is; it is a part of our lives and it will make or break us depending on how we see it, where one might see limits; I see possibilities, where one could see one way I could see another and it is because C.P has taught me the importance of having a view point, which enables you to move forward in acceptance; with strength I am who I am, I see the world in the colour and loveliness and sparkle that I do, because I have chosen too, because my view point means more then a diagnosis or circumstance.
Welcome to Holland. I love it here.