[fusion_text][dropcap]O[/dropcap]ne of the first times I understood I was different was in kindergarten, I had to be wheeled around if we were going on excursions, whereas the other kids would walk. I understood I was different, but I don’t think I was bothered by it. It was just widely accepted that, that was the way it was like with me.

early childhood and cp
A picture my dad drew of me at age 4 or 5. 🙂

I wasn’t picked at much in kindergarten either, most likely because at that age kids are just more curious than anything, and I had learned from home that if someone asked why I couldnt walk well, or only walked on my toes, I would answer “I was just born this way, you were born a different way”. And they left it at that usually. We talked openly about my CP at home, and my parents were very supportive of me as I grew up, always telling me I could accomplish anything, and I believed it. We also talked about what to say to others who asked me about it or if someone made fun of me.

Small Details Matter

Although I will say some of the harder parts of growing up as a young boy with CP was some of the smaller things in every day life, like learning how to tie my shoelaces, or be completely independent when it came to going to the bathroom. Those are small things, that is easy to overlook, but can be a pretty tough thing to deal with if its not addressed, because I remember at times I was so embarrassed by the fact that I had problems with these things that I would run out without tying my shoelaces (we later got shoes with velcro), or not going to the bathroom for weeks because I was too embarrassed to ask for help. I am not sure wether or not the latter was all due to my CP, but I think it was in the beginning, and even though I could have learned it as I got older, I sort of developed a mental hang up with it, and therefore it took me a lot longer than my peers. Also, wetting the bed etc was a problem sometimes when I was little, just because sometimes, my body would signal me too late that I needed to go, that could also be quite a tough mental thing to tackle.

Reflecting

As I grew older, the other kids started to change how they reacted towards the CP, but so did I. I became more reflective about being different, and started to see how it affected me more. I would say in general though that I was still treated very well by my peers, and I was generally not too bothered about my CP. Except for when I couldn’t play for the local soccer team anymore because of the physical toll it took on me, that made me quite sad, but I enjoyed playing soccer with my friends on my spare time on a local pitch near my house. Soccer was in general something I really enjoyed playing, because it made me feel included and normal. Sure, I was probably the worst one there as I couldn’t run very fast, and my fine motor skills weren’t on the same level. But my friends had no problems including me in their activities, and there was really no question as to wether I should be allowed to join them or not. Not until elementary school anyways, where some of the other kids would always pick me last if we picked teams, or protest sometimes at the prospect of having me on their team, but thats when it helped to have good friends who stood up for me.

Physically speaking I noticed I was different because I would get tired a lot faster than my friends would during physical activities. But I really pushed myself hard, and many times too far just to be able to partake in the activities they did. At that age, the consequences weren’t as harsh as they are now, and other than feeling “numb”, tired and achey the rest of the evening and a little stiff the day after, I didn’t give much thought to it. That stands in stark contrast to today, where if I push my self too hard and expend to much energy, I can be out of it for days, even weeks, before I am back to 100 %. It just goes to show how important proper pacing and being aware of your body is when you have CP. I was routinely warned by the Physiotherapist that I should not over extend myself too much, as it may result in problems physically at a later age, thankfully I listened enough to still have a reasonably well functioning body at 27. But I do definitely notice that I have lived with CP for 27 years now.

I had one surgery during my early childhood years, lengthening my achilles tendons, so that I would not walk so much on my toes, but be able to “touch down” with my heel. So that was really the only period in my childhood where I was taken away from everyday life because of the CP. And looking back at it, it was a frustrating experience, but very worthwhile in the end as it increased my ability to move around drastically.

Realizing My Limits

Mentally the CP only caused moments of frustration and sadness when I was young, but it did increasingly affect me as I got older 7 years old ++, one of the ways it did was as I started to reflect more over my own differences and limits I struggled to reconcile this with what I had been taught at home, which was “You can do anything you can set your mind to”. And I believed that growing up, so it was tough mentally at times to realize that I couldn’t do anything and everyrhing I wanted. I could not become a proffessional soccer player, or a firefighter even though I was quite adamant to my parents about it at the time. 🙂

As I got older, and after having gone through some rough patches mentally also regarding the CP however, I became much better at accepting the reality of my existence, and not viewing it as something inferior or limiting, but rather “just as it should be”. I would say in general that my early childhood was a happy one, and it wasn’t until i reached 10-18 years of age I started encountering problems with bullying and others making fun of me. I will adress that seperately in a video blog (vlog) about bullying coming up in the next few days! 🙂 Until then, I hope you will share, comment and like if you found this article helpful. Also, remember to subscribe to the newsletter (box in the top right corner) if you want to never miss a post. The first newsletter should be going out on Sunday.

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17 Responses

  1. This article is full of so much information that I am going through with by son(age 9). Doctors just don’t tell you these things. Thank you for starting this website.

  2. Hi Alex, I’m Mike from New Zealand and I too live with CP.. I’m extremely impressed with your website and the way you have portrayed your personal thoughts and experiences of growing up with this very often challenging disability..
    I’ve subscribed to your newsletter and if I can help in any way with my own, more older (54 year old) thoughts and experiences on growing up with CP in an earlier generation; the medical side to life; schooling before there were teacher aids; to finding love and marriage; parenting and now my own grandchildren – I’d be absolutely chuffed to be of any support… Keep up the wonderful work 🙂

  3. Hi Mike! Thanks so much for the kind words, I am so happy you like the website and what I´ve written so far! I would love for you to contribute to the site, as I think yours would be an invaluable perspective. Please shoot me a message through the form on the “Write for us” page, maybe with some ideas for what you´d like to do/write about? Looking forward to hearing from you, and thanks again for the comment.

  4. Hi Alex,
    I am a paediatric development professional from New Zealand, a creator of the Holistic Perception Development (HPD) program. I have been working in the field for over 30 years. HPD has developed powerful, practical strategies for improving the child’s abilities and building a better, stronger brain that are supported by the neuroscience of brain plasticity.
    I do everything I can to make the child’s experience fun and fearless. I know that going to therapy may not be on the list of many as their ‘favourite thing to do’, and with that in mind, I have made every attempt to make sure my practice is a place that exudes a positive atmosphere. I feel that working with children is a privilege and something I truly enjoy! I can offer my help in treatments, education program, and parenting. Congratulations to the new website. Livia

  5. Hi. My son also had SD. He’s 7. Ur article gelled me understand how he feels at this age. He comes home from school n cries about being different from others.
    We haven’t told him he has CP…. Instead told him he badly hurt his legs when he was little. But now he has started doubting this n says so.

    I’m glad i came across ur blog n i can understand wat he actually feels n guess thru.

    Thank u so much for sharing.

  6. Hello Kamini and thanks for commenting!
    I personally think its best to tell him the truth, as it gives him something more concrete to work with and identify, even though it may still be difficult to accept. I hope as he grows up happy and at peace with the CP, despite and because of it, life can be great still. I wish you and your family the best of luck!

  7. Thank you for this! I am struggling to understand what I can do for my son, not yet three. I am feeling confused and helpless and I am having trouble finding parents like me to gain information from. I am trying to decide whether I should start my own blog to help start dialogue and community. I’m not a good writer so it’s a scary thought for me. It was really nice hearing ur thoughts on growing up. I’d love to hear more.
    Thank u for sharing! Looking forward to reading more.

    1. Hello Chris and thanks for commenting! I can only imagine that this can be a very confusing for any parent, i´ve felt that sometimes too as someone with CP, there is a lot of general information out there but not as much about living with CP or being a parent to someone with CP. Starting a blog is a great idea. If you want, you are more than welcome to shoot me an email in the “write for us page” here, you could try your hand at writing some articles if you´d like. Id love having a parents perspective here.

      There has been little activity here lately because Ive been busy with other things, but I am also planning a “relaunch” and making the site better with more info than ever. 🙂

  8. Hi Alex, this really is brilliant. Thanks for taking time to create this website it is completely invaluable to parents of children with CP! I’ve emailed your link to the grandparents as well as the nursery SENCO! It’s an interesting though, at times a daunting read but better go in prepared. I used the research papers evidencing the links between CP and difficulties with maths to support my application for extra support for my 4 year old for when she goes to school. Fantastic stuff! Happy New Year.

    1. Hello Adiana! Unfortunately your comment got trapped by the spam filter on the site for some reason, so I apologise for the delayed response. Thank you so much for your kind words, they mean a lot! And I think its really awesome that you could use information from here in helping your daughter get more support! That makes me happy 🙂

  9. Wow! I just stumbled across your blog on Facebook. It’s nice having a point of view like yours. You and I are the same age, my son is 2 and he has SDCP. We actually just left a movement disorder clinic, where he received Botox injections. It’s nerve wrecking every time we make the 2 1/2 trips to see the doctors and specialists. I blame myself way more on days like today than other days. The first article I read was the “CP and guilt – It’s not your fault”. That article was definitely what I needed, THANK YOU! Your such an inspiration and I will follow this blog, I think it’s a beautiful thing. Have a blessed day!

  10. Thanks so much for commenting and the kind words Felicia! I am so glad you find this blog helpful, that means I am doing something right! 🙂 I am also glad my latest article helped you with guilt, that post was created for that purpose, and to bring up an important subject. I

    hope your son gets some benefits from the botox injections, I didn’t have mine until I was 24-25, so its great that its available now a days. I wish you and your family the best of luck with everything! 🙂

  11. Hi Alexander. Very pleased to see this website as im father of a 4.5 yrs old son with diplegia. Me and my wife have always wondered how our son, Wali, will be thinking about his disability. Your write up makes us better understand him. We would love to stay connected by all means.

    1. Thank you for commenting Tausif! I am really glad you like the website, there will be more content to come in the near future as well. I am really glad if this can help you and your wife, and Wali in any way. That was the reason I started this website in the first place. 🙂

  12. I am so glad I found your website and thankful to you for doing this! Our son is 3 and has SD CP which was diagnosed about a year ago and we are trying our best to do whats best for him. Thank you for sharing your experiences, I hope you continue to do so and wish you the best!

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