For parents about a child with cerebral palsy

Hello, my mom and dad.

I have cerebral palsy. You didn't know about my diagnosis right away. So it took time to understand and accept what was happening. You, my parents, have been overwhelmed with a lot of information and different ideas on how to deal with this diagnosis. These ideas are very different from each other, and it's hard to sort them out, but you have to do this. It is up to you to decide what is useful for me.

My mom and dad are my main experts. You know me better than anyone, and I trust you. You will need to read a lot, consult, talk to other parents, and make choices.

Let's find out what's wrong with me. Therefore, we will determine the level according to GFM-CS.

A doctor or physical therapist can help you do this. There are five levels in total: the first is the lightest, sometimes almost invisible. The fifth is the hardest. Specialists who use modern methods are well aware of this classification.

I'm at the third level. This means that I can sit on the floor, crawl and walk short distances on my own. However, when I will go to kindergarten or school, I will need a wheelchair to move long distances with the group and to have the energy to do other things.

The good news is that my brain is constantly evolving.

Everything I do forms neural connections. My games, routine, activity and communication create my brain! That's why it's so important to choose methods that will help me develop all the time, not just in the classroom.

We will select rehabilitation methods, professional and honest specialists. Then it will be easier to accept me with my differences. There are many different methods that you will be offered to help me develop. Moreover, some contradict others.

I will tell you about important facts.

Some people say that if I exercise a lot, my diagnosis will be cancelled. But this is not true. This problem is stable. Exercises are very important and necessary for me, but the diagnosis cannot be cancelled and my movements will always be different.
Scientists have proven that pain and fear destroy neural connections. But we definitely want me to learn and develop, which means forming these neural connections. Do not allow me to use methods when I am in pain, even if they promise you a miracle. They can also say that it hurts now, but then I will forget. No, this horror and distrust of people will always be with me. Don't experiment on me, don't let me get hurt. Find specialists who will really help you.

Communication, play and cognition are important from the very beginning. Sometimes people say that you have to develop movements first, and only then everything else. It's not true. All children develop in all areas.

Find doctors, a physical therapist, a psychologist, and a speech therapist. You can ask other parents and choose those:

in whose class children do not cry;
who teach me things I can use in my life right away;
who teach you, my parents, how to teach me, play with me, and help me;
who know what I can learn in the near future and will tell you about it;
who motivate me to try harder and do more than I am doing now;
who will explain to you how to make me more active and independent. And to help only where I really need to be helped;
who can select for me the equipment I need.

I will be grateful to you for the specialists who will help me develop, learn to trust people and live in pleasure. Talk to the experts who work with me, you can learn a lot from them. Specialists know a lot about diagnoses, and you will know a lot about me. Together, we can do a lot.

The platform for my development is the right postures. A physical therapist will select postures that will make it easier to control my muscles for a long time, almost all the time, not just during procedures. They will make my tone optimal. The correct postures will allow me to eat (swallow and chew), speak, and play the games my peers play better. In general, life will be better.

It's a whole science to change my postures! A physical therapist will teach us this. You can make changing my posture a real educational activity for me. Just imaging: you changed my diaper, and the effect is like exercising with the best specialist. These are special techniques that you didn't know at first, but you can easily learn them.

There are a lot of other secrets that change with age. For example, that the moving arm needs to be helped by supporting and guiding the movement by the shoulder. That I need to sit with my feet on the floor and my joints at 90 degrees, that if a pencil and spoon have a thick handle, it will be easier for me to write and eat, and much more.

We will learn relaxation techniques. This is really important!

Sometimes I'll get tired of a position or posture, but I won't always and immediately learn to change them on my own. Do you remember? I have difficulty controlling my muscles! I will learn this later than my peers will, and at first, I will show my tiredness by restlessness and caprices.

Special equipment, which will be selected by specialists, will help me to feel like a part of normal life, to be more attentive.

For positioning and movement: chairs, walkers, wheelchairs. They are designed in such a way that they support my muscles in the correct position, help me relax, and protect me from contractures. Good equipment is always additional help for both me and you. This is not another diagnosis, but help.
For communication. I immediately realize what I want to say, but I can't do this. To keep up with my thoughts, we can use PECS cards and a tablet that pronounces my phrases faster than I can. All this will make me an equal participant in communication and inspire me to talk and interact with adults and children.

There are many toys for joy and learning. There are some of them that I can activate by simply pressing a button. Believe me, it's a lot of fun and inspires me to play and develop. I'll play age-appropriate games, but in a different way, driving trains and making applications.

The beauty of movements and resemblance to other children are not important to me at all. I like to do something and see the result. I move in a different way. All parents want their child's movements to be beautiful. You can spend a lot of your and my energy on smooth movements. On the other hand, you can help me become active, independent, and do things that are really interesting to me and children of my age.

Here is what we can do together:

Play and be noisy. Then I feel that I'm loved for no reason, not just for some new skill. And this is the best thing I have ever experienced. The best way to show this is to play, frolic, and be noisy. For example, drawing something on each other or telling something funny in ear and laughing together. Or splash in the bathroom and blow on the foam. Touching the snow together, making faces and playing blinkers. Oh, I'll probably have a lot more ideas with you! I really like it when we are together, when the game has no important meaning, when we are relaxed and sudden. This is the most fun! Although no, we will not play all the games together. For example, I want to lie on the floor, wrestle and ride my dad like my warhorse.

Understand. People are happy when they are understood. Children also want to be understood. I ask for help, share my joy, miss or invite you to play. Try to watch and understand what I'm showing you now. Perhaps I am addressing you with my eyes. You know, there are different kinds of looks: questioning, shining and joyful. I definitely want to address you and I'm already showing you my wishes! Say the guess "you want to...". Wait for my positive answer "Exactly. You guessed it." And then help me realize my wish or tell me that it is impossible now. In this way, I will better understand my desires, be more active in cognition, and try to be clearer to you and communicate what I "want" in an adult way.

Try. I will try a lot to learn new moves. It was the same for you, adults: to learn to walk, you fell a million times. Any training consists of repetitions and mistakes. When people want to learn how to roller skating, they go to training, put on rollerblades and try it, but they don't go for a massage. I need a safe space around me and the ability to fall and get up on my own. And, of course, comfort and support. It's hard and hurtful when you fall. Be there for me not to do my job, but to teach me. Let me fall and get up again and support me again.

I will learn about my world. The world that is right next to me. We spend a lot of time in rehabilitation courses and hospitals, and this is understandable. However, the world is not limited to corridors, wards and offices. I really want to know the world as it is, in its entirety: my yard and the shops around me, parks and streets, theatres and people. Mom and Dad, don't wait for my gait to become normal - it's unlikely to happen. Come with me to the sandbox, to parks, and to parties. I like it when we walk together, even though I walk slowly and people pay attention to me.

Mom, I saw how difficult it was for you at first to catch curious glances and not answer tactless questions. But I am very glad that we did not stay at home. Now you are a master. You answer questions from others very skilfully and easy. We invite guests to holidays, visit them ourselves, prepare treats together, take pictures, and everything comes with experience. In the photos, as in real life, you can see my differences, but I'm not ashamed of it. That's why I've become so sociable, I easily invite my friends to visit me and I'm looking forward to going to school.

I want to meet and be friends with the kids! Yes, I know that it is safer for me to communicate with adults, as well as for all children. Adults do not push, they understand everything and they can wait. They can't do just one thing. Be children. Adults cannot replace peers! Come up with games that we can play together. And then we will be able to be friends with the neighbourhood children. The boys and I will go to the same school together. In addition, eventually we won't need the help of moms and dads.

I believe that my future does not depend on my diagnosis. It depends on my experience. It depends on how confident I am, how interested and active I am, how independent and sociable I am.

Survey plan

Like for all children, visits to the ophthalmologist and ENT specialist are important to me. I may have damage to the parts of my brain responsible for vision and hearing. It is better to find this out right away, as well as to find out if treatment is possible.
To check the condition of bones and muscles, I will need an orthopaedist. In severe forms of the cerebral palsy, osteoporosis and pathological fractures can occur. A common problem is a curvature of the ankle. Sometimes scoliosis correction is necessary.

A physical therapist should be the main physician. He will help me develop my movements, control abnormal tone, and recommend orthoses, special wheelchairs, or other mobility devices that are necessary for my age and needs. Modern technology makes life much easier for people with cerebral palsy, and there is no need to be ashamed of it. Some things are provided by the state. Ask an orthopaedist or family doctor about it.
A speech therapist and a communication specialist will help me find a way to communicate with other people if my speech is difficult.
The psychologist will help me better understand my behaviour, explain my nervous breakdowns, if any, and suggest ways to motivate me to study.