[fusion_text][dropcap]I[/dropcap]´m not one to sweat the small stuff. I´ve always tried to not care about the small things and to not let them get me down. Yet, when I look back at things that hurt me the most in regards to the CP, it was always the small things, that perhaps people didn’t think mattered as much.

It was very easy to see that I was not as fast as everyone else, or that my legs scissor inwards when I walked. Therefore the fact that I struggled to tie my shoelaces or write by hand was not payed as much attention to, after all they were small insignificant things, right?

I guess, in this case the saying “Many small brooks make a river” applies well, all those small things continued to chip away at my self-esteem and self-confidence. And because they were largely downplayed by everyone around me, made it worse, Maybe it wasn´t the CP, maybe I was just bad at all this things naturally. Maybe I was just born stupid?

Below I’ve created a list of 5 things that appeared small but really troubled me growing up, and some of them still do today.

 

1. Going to Physiotherapy/Doctors/Hospital.
Going to my weekly physiotherapy really got to me, not because it was extremely painful (it was painful at times thought) but mostly because of what it made me feel. I tried my best each day to see myself as a normal kid, who would try to participate in as many things as I could with my friends, to not feel different. Therefore it was extremely frustrating and depressing going to see the physio, or going on my check ups with the doctors or neurologist. Every time I was there, I was told what was wrong with me. Naturally, their job is to work with you to improve those things, so they talk about them a lot. But I don’t think they realized how much that affected me. To hear them saying things to each other like “Yes, his knees are scissoring inwards” “He is at x % of a normal rotation of the hips”. “The knee does not completely straightened out” “Both feet are spastic, the right one is worse”.

This may seem silly now, but at the time I remember both thinking and at times verbally defending myself, and especially the things they pointed out, saying things like “But, my right foot is great for passing the football! or “But I am able to stand on one leg a lot longer on my left! This was a normal self defense mechanism, because it didn’t only feel like they attacked the CP, they attacked me as a person, pointing out all the things that was wrong with me, all the things that didn’t work like it should. I don’t even think they realized how much this hurt. In fact, just writing this now makes my eyes water, even though I feel well passed this problem at this point in my life, it never quite goes away.

 

2. I struggled with a lot of small tasks because of my reduced fine motor skills.

I always wanted to feel as normal as possible. It may seem strange, but it was a lot easier for me to accept that I couldn’t win the 100m relay races, or be as good at skiing as my friends. Those were difficult tasks to begin with, that had an obvious link to my CP. It was a lot harder however to constantly run into things that were perceived as simple and elementary for even small children to accomplish, and not be able to do them. These things would include opening my lunch box, buttoning my jacket or pants, tying my shoelaces, managing to hold my cards correctly when playing a card game, as they would continuously fall out of my hand or I would end up inadvertently showing the others my cards. These are small things that everyone takes for granted, when I saw I couldn’t do them well, I felt incredibly stupid.

 

3. My Digestion System and Going to the Bathroom.
This was one of the hardest one to handle. There is something extra humiliating about not being completely in control of going to the bathroom when you need to, as you get older. My body would always signal me very late when I needed to go, because of that, sometimes I never made it there in time. It made me feel humiliated, small and stupid. In addition to that I was often very constipated, which I learned is common among those with CP, although I was never told that at the time. This would lead to me going weeks without going to the bathroom, if you couple this with my already strained relationship with these basic human needs, you can start to imagine, that this really impacted me mentally. I would actually get anxiety attacks or feel nervous every time I was at someone else place on my own, because of the bathroom situation.

 

4. I didn’t understand a single thing when it came to Math.
A lot of people have problems with math’s, that is not something exclusive that people with Cerebral Palsy struggle with, but I feel pretty confident that my extremely poor math skills is at least somewhat influenced by the CP, something which my doctors and neuropsychologists have agreed to. It was not that I didn’t get algebra, or that I didn’t get addition the first time around, I would struggle with the most basic of concepts. And even if I managed to learn it during class, the knowledge would be completely gone the next day, as if it never existed. And it was not for lack of trying, I spent hours upon hours each single day at home, to the point were I was in tears, just trying to do some of my math homework. That lead to me feeling incredibly stupid and hating everything that had to do with math for my entire schooling. That is until I started the last year of High school, were I got my own private math teacher, who specialized in teaching kids with different learning disabilities. He taught math in a completely different way, and without him, I would have never passed High School. So thank you Yngve 🙂

 

5. I would be extremely slow when I had to write by hand.
For the first years of my education, up until the end of elementary school, I had to do my assignments just like everyone else, by hand. Not only did my motor skills challenge me once again, and force me get cramps from writing, but I would spend much, much longer than everyone else in the class accomplishing everything, even though I knew the correct answers. Akin to math, I also spent hours and hours doing this at home, so it was safe to say, homework time was a frustrating and dreaded time for me. I know if you ask my mother, she will indeed tell you that it was a struggle, and that she would have to endure the occasional outbursts of rage and frustration, and me throwing away my books screaming. The reason for this was not because I was bored, for the most part I loved learning, and I did well in many subjects, but practical tasks such as these frustrated me to end, because I struggled a lot with them, it chipped away at me, and decreased by self esteem by a lot each time. Thank God for the computer!

 As usual, if you liked the post, please like and share it, as it really helps me out! [/fusion_text][imageframe lightbox=”no” lightbox_image=”” style_type=”none” hover_type=”none” bordercolor=”” bordersize=”0px” borderradius=”0″ stylecolor=”” align=”none” link=”https://cpexperience.com/shop/” linktarget=”_self” animation_type=”0″ animation_direction=”down” animation_speed=”0.1″ hide_on_mobile=”no” class=”” id=””] [/imageframe]

22 Responses

  1. I struggle with processing information I received whether it be auditory or written. I feel stupid for forgetting what was said to me a minute ago. For this reason I prefer to take someone with me to doctors appointments. Bits of what is said to me sticks but a lot goes through one ear and comes out the other ear. The same goes for reading, sometimes I have to read a sentence or paragraph twice in order to fully comprehend its context.

    1. Thanks for commenting Maria 🙂 I have the same problem at times, especially when trying to read books, so I usually stick to audio books when I can, so that I can just rewind, instead of frustrating myself by reading the same pharagraph 5 times before it sinks in what ive actually read.

  2. I just read this out to my son Callum who is 10 with spastic diplegia, he wants to say:

    “I feel the same way when I go to the physio and doctors, it makes me feel so different to other kids and I feel alone, like nobody else is out there who has the same thing. I can never keep up with my friends when playing sports and stuff like that, I always try and show off and do funny things so I feel like I fit in and they think I’m funny. I also wear an AFO on my right leg and I hate wearing it. Did you wear AFO’s on both legs or just one? When did you get to stop wearing AFO’s?”

    Thank you for giving me an insight into how it is for Callum, he really struggles with being different and it is hard to know how to help him.

    1. Thank you for commenting Nicola, and please pass on my thanks and best wishes to Callum as well and thanks for his words! I didnt show as much with my friends, my solution was to retract into myself and shy away from others, but I can completely to relate to Callum when I was that age. I also felt very alone at times with my CP. Yes I wore AFO´s on both legs, sometimes only on my right (as that was the “weaker” side). And I wore AFO´s after my second surgery. I absolutely hated them! Especially trying to sleep with them was a pain, even though I knew they were good for me.

  3. Thank you for your blogs Alexander. My son is almost two and has CP SD. It is so useful to read your experiences and start to prepare for what life might throw at my son. I don’t wish to sound patronising because you are closer to my age than my son’s but I’m sure your mum must be so incredibly proud of you. Tell her she did a good job!

    1. Thank you so much for commeting Lorna! 🙂 I am really glad you found this article and this website useful, that makes me truly happy 🙂 Hehe that is not patronising, and I think my mom is proud too, at least I hope so. I know my dad translates some of these articles for her to read as her English is not great, and so far she approves. 🙂

  4. Thank you for your blog Alexander I look forward to following. I have a 4 year old with spastic diplegia & we are just starting the school process this has helped me be aware for things in the future. Keep up the good work – Karen, Perth Australia

  5. Hi Alexander, my son is 3 and lives with SD CP, I always wonder how he feels about ‘being different’ to his friends & how he feels when we’re at his medical appointments. Thank you for sharing it’s a great insight and will help me to empathise with him. Karla – in London.

  6. Would just like to say a huge ‘Thank You’ for this article. My son is 8 and has CP. He has all the same issues that you mention but he can’t articulate them as well as you have done here. It gives us a great insight as parents and this article has certainly helped me to understand better what feelings and frustrations he might have. Once again, Thank you!

  7. I am thrilled to have found your site! My son is 14 and much of this post rings true for his experience – I am looking forward to sharing this with him.

    It’s so hard to balance some of these things – he is great at verbalizing a his frustrations like having to go to PT and how hard and unfair it is, and how hard it is to write and how unfair it is and he just wants to be like other kids. But verbalizing isn’t enough – there’s no real “solution” – it all just “is”. All I can do is help give him tools that will help, which doesn’t feel like enough some days!

    Thank you again.

    1. Thank you for commenting Sara! I am really happy you like the site. 🙂
      I hope your son will like the site as well.

      Its great that he verbalises his frustrations though, that is far better than keeping the frustration and thoughts inside him. The key I think is to learn to accept the CP as something good, something positive, that can give him a unique perspective on life, this is not easy to do, but I feel its important for overall quality of life. So if you give him the tools to do this, that is invaluable.

  8. Thank you Alexander for sharing your thoughts and experiences! Once again, you have given me valuable insight into my daughters struggles. She is 6, has cerebral palsy, spastic diplegia, we homeschool, and while she has been a whiz at reading I have wondered about her mathematic skills. They are coming along just fine, but not nearly as easily as her reading skills have. Both her father and I excelled in and enjoyed math so we were a little stumped as to why she seemed to be struggling. Now I know to simply give her a little more time and probably some more concrete experiences 🙂 thank you so much for sharing!

    1. Thanks for commenting Jodi! I am so glad if I can continue to give insight and help. Yeah the math can be challenge, but as long as she doesn’t let it get to her too much or feel down about it, that is the most important i feel. I wish you and your family all the best! 🙂

  9. Wow! What a great blog Alexander. My daughter Maggie is 10 and has spastic diplegia. The math thing….SAME as her! Its like she knows it one night and then the next day it’s like she has never opened a math book in her life. Thanks for the insights, this will help me be a better parent. Question……if you would have been able to choose would you have attended middle school? or wished your parents home schooled you?
    Thank you

    1. Hi Doreen and thanks for commenting! Im glad this was useful to you and your daughter, the math thing can be extremely frustrating, especially if you don’t understand the reasons.

      Hmm that is a good question, I would say I would probably prefer to attend middle school, simply because I enjoyed being around my friends. Its though though, I would have liked to skip the bullying thats for sure, but at least I learned a lot from it. And I am thankful for the help I got from the schools from aides etc.

  10. Love your blog. My son Kristopher is 22 years old and has Spastic Quadrapledgia Cerebral Palsy. He is non verbal so your in site has help me get a better understanding of some of what he goes thru. Thank you.

  11. Thank you so much. I’ve just found your site. I have a 5yr old boy with CP and I struggle to understand his frustrations and his difficulties and I struggle even more of how to explain them to others. Your site has given me (heart breaking to read as a mum) the information I need to help him better xxx

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