[fusion_text][dropcap]H[/dropcap]ow do you talk to your child about the CP? Do you tell them exactly what it is, or do you break it to them in softer terms? And when is a good time to talk about these things? As a parent maybe you are also feeling apprehensive and scared to talk to your child about them being different from others. I can’t claim to have the definite answers to all of these questions, but now that I am older I have come to some conclusions on what was valuable to me when it came to communicating about the CP with my parents and others.

1. Start early, but adapt your message as your child grows. I personally think its a good idea to talk to your child as early as possible about the CP, because then it wont be something strange and foreign thing when they are older which they struggle to understand. That being said, I think you need to adapt what you said based on your child’s age and personality. Like I mentioned in my “Does Your Child Hate Physical Therapy” post, when you are young and have CP, you lack a perspective on the future and getting older, so therefore I think its important to make it relevant to your child now, and not in 10 years. That can for example mean that you tell your child something like “Everyone is born different, you were born like this, and that is completely ok, other people are different in other ways, and thats okay too.” I dont think you need to go into to many specifics about what the CP is at a very young age, because your child won’t have any reference points or understanding to understand what it really means yet anyways, and they may understand it completely differently than you do and that may lead to misunderstandings.

talking about cp
Image courtesy of TatyanaG @ iStockPhoto.coml

I remember when I was little, and if I came home and was sad about the fact that I couldn’t climb in the trees like my friends, my mom would always tell me; “Not everyone climb in trees, I cant do it either. But you are good when it comes to computers and other things, not everyone is good at that. That helped me understand that it was okay to be different, but more importantly, that others were different too, and that I did some things well as well.

As your child grows older you can be more specific about different aspects of the CP, when you feel they can understand this at a deeper level. I have always been a person who want to understand something deeply, and understand the reasons behind it, so I appreciated learning about the CP and what it really was, it also made it a lot less scary, once I got past the stigma of it being a brain damage. (That sadly has somewhat of a negative connotation in today’s society still).

2. Teach your child to think positively, instead of telling them what they should think. As a parent you may want to tell your child a thousand times over how its nonsense for them to feel useless, or feel less worthy than their peers, and that is understandable. But if you tell people what they should not think, its usually not very effective. The two best thing you can do as the person they trust the most is to provide them with encouragement and love to be themselves without fear of being different. It is like the old saying goes “give a man a fish and you feed him for a day; teach a man to fish and you feed him for a lifetime.” If you teach your child how to think positively and in a healthy way about themselves and their CP, that will help them more than you telling them they have to believe they are good enough.

There are a few ways to do this I have found and if you want to read more extensively about you should read this post and this post I’ve written about the subject, but in general these are my top tips.

3. Be honest with your child, and let them know they can come to you, but don’t expect them to always do. I think its best to always answer as honestly as possible (keeping in mind their age as mentioned above) when your child comes to you and is wondering about something related to the CP. Lying or creating a false safety blanket doesn’t serve much good I think, as it might just be worse for all of you if they later discover the truth. However, don’t be too surprised if your child is reluctant to talk about the CP with you as they are older, and even if they seem a bit withdrawn than they used to. I will write a separate post about CP and teenage years in the future, but being a teenager can be a trying to time for anyone, and coming to terms with CP at that age can also be very difficult. (Another reason why you should start early in teaching your child how to be the master of their own thought process when it comes to the CP). The most important thing you can do is to let them know you are available and there for them if they need you, but you have to give them the space they require to figure out some of these things themselves as well.

This is by no means a complete list of what you should do or how you should talk about CP to your child, but I hope this can be of use to some of you. And remember, you just being there for your child and loving them, gives them safety and courage to tackle this condition already, so keep doing that, and you are already on your way to seeing your child grow up a healthy and well balanced adult!

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7 Responses

  1. Thank you for your post. I am sure had my parents told me of my cp at all must less at an earlier age it wouldn’t have been such a wave of emotions for me. I have mild cp, affecting my right leg the most. All my parents ever told me was that I had a short heel cord lengthening when I was three and that I was just like every other child! Except I wasn’t, I struggled running, skipping, playing kick ball and a variety of other things. I never questioned them… I went for check ups and wore AFO braces but never questioned that I definitely felt different and was unable to do some physical things. My dad died when I was 19. My mom when I was 21. They had several problems, it wasn’t until my second pregnancy I really began to struggle and finally really question why. I obtained my medical records and found out over google when I typed in my diagnosis that I had cp. I was relieved yet felt like I had been betrayed also. I think had it gone differently maybe it would have been easier for me. My condition is mild but stressful at times. Thank you

    1. Thank you so much for sharing Julie! Wow, that is quite a strong story. I can only imagine what it is like to not having been told about the CP. I struggled with feeling different as it was, and I knew about CP since i was 3-4 years old. Have you found things that makes living with CP easier now as an adult?

  2. I get Botox injections three of them to the lower part of my right leg every three mos. They help, I have general weakness in all limbs and just a lot of fatigue. The winter I struggle the most! If I get get a chill or cold my entire body become stiff like a board. I am frequently tense and have anxiety. I am in counciling to help deal with the questions and confusion of the decisions my parents made. I am just starting to reach out and share my experience with others

    1. I can relate to that for sure. The winter is challenging, as my body handles it rather poorly, and especially in a cold country such as Norway. Having CP is something that can be a challenge to deal with sometimes, but I am glad you have started to reach out and started to process all the questions and concerns you have about it. I wish you the best of luck! 🙂

  3. Look into Selective Dorsal Rhizotomy with Dr. Park @ the St. Louis Children’s Hospital. He performs this surgery on adults as well. It changes lives. Worth a look; my daughter had the surgery this summer and it is amazing!

    1. Hello Katrina and thanks for your comment! Apologies for the late reply. Ive had a look at it, it seems like a great tool to help benefit those that are eligible, and Dr Park seems to be doing a great job. As for me think my surgery days are pretty much over, but I am sure it can benefit lots of others 🙂

  4. Alexander is my son and I think he has had the optimum upbringing we could give him from his handicap spastic dyplegia.vi used all resources to give him a rich upbringing to far over twenty years and I know that he has the Intelligence
    to make decisions which he himself stands for.There the problem is that physical work was limited them to become full-fledged in workinglife.They must take into account the energy level at any time.When I like father notice that he takes the mother lightest resort then it is not sure he understands my vision of reality.He probably know what I mean but we must have an open dialogue about life on, because if we will support him so we must have a plan because we disappear before him.I feel that we have not made him a helpless person when he tackles politics person and know life realities.But few weeks ago I and my son get into an argument that we said issues that we should never have said.Wehad a lovable childhood with close contact with computer training which has become his prof.Vi two can talk about broad themes and have greatly enjoyed it.The only thing that may worry my wife is our son and his dears,others dose’nt mean anything.That is one thing you can not do with an adult child is the personality that has established ones.I know that the capacity of the brain is where among many with CP, but either they will not admit their limitations or open to the mind to you.I believes parents and children must solve konflicts so fast as possible.We arena nuclear family so we must stand together.And whatever the child must with disabilities interact with their nearest about what they need hjelp.Vi manages never to forget a child.

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