My favourite CP quote is one which Firefly shared during CP Awareness Month: “4 in 5 kids can talk (some too much)”.
It highlights the fact that communication skills are a matter of perspective.
To some people, our daughter Esther “doesn’t talk much”.
Having just turned 3, she can say only about a half-dozen recognisable words, (most of which are only recognisable if you are her Mommy and Daddy).
However, Esther’s Speech/Language Pathologist is very impressed with her language and communication skills.
I take recordings of Esther talking on my phone since she politely doesn’t say a word at therapy (a common trait I am told!).
I don’t want to boast of the words that Esther says.
I know that there are many people with CP and other conditions, who do not make any sounds.
Of course, I am very grateful that Esther does speak, and we encourage it and relish every new letter of the alphabet.
But, for those whose loved one does not speak, I want to encourage you with all the other communication methods Esther uses.
These are far more frequent, and they go far deeper into who she is than her handful of words like “Mama” and “Bubba”.
Arguably the biggest indicators of what is going on with Esther are the smiles that light up her face.
She has a coy smile when she is playing with her baby brother, and he is talking or making her laugh.
She shows so much understanding, and except for her head lag, you would hardly know that she has any disabilities.
She is relaxed, enjoying the company of her brother.
Esther also has an excited smile, with all teeth showing, that beams on suddenly as if someone has flicked a switch.
The switch is something that makes her happy, like Daddy coming back from work, or having a go on the slide in the park, or even just watching Bubba sliding down.
She kicks and wriggles, and I am sure there is no difference between her excitement and that of a fully-able-bodied child enjoying their own experiences.
My favourite of Esther’s smiles is one which is entirely voluntary.
We are blessed in that Esther is able to recognise people she knows, and that she can respond to them.
This smile goes from ear to ear, gentle and peaceful, and shows her love for the other person.
We are also grateful that Esther is capable of some voluntary movement.
She has spastic quadriplegic CP, but she can control one arm enough to put it around my or Daddy’s neck.
This isn’t a frequent occurrence, but one which is much appreciated.
Usually when she is content and comfortable, she will sit and cuddle with us, and then she might just have strength to do this herself, or with a little help.
Esther can also squeeze our hands, while we giving her a bottle, or if we are settling her down for the night.
This says she needs and wants us.
I first felt that squeeze the day she was born, at 23 weeks, when her tiny hand could not span even one of my fingers.
It was, and still is, a precious feeling.
Some of Esther’s body language conveys sad emotions.
Of course, she cries.
I am sure other parents would agree that children with disabilities can be more understanding than other children, and notice tones of voices, anger, humour, joy, and sadness more easily.
They understand more than they know how to express.
She also conveys stress and fright by going rigid and extending her limbs.
While sometimes this is involuntary, I believe that often she “goes stiff” because she is insecure.
She acts this way with people she doesn’t know well.
They do not know how to handle her, and she senses this immediately.
Sometimes she extends certain parts of her body when she is working hard on a task.
She is so perseverant and inspiring in the effort she displays.
Communication is about listening and watching – in short, receiving – what is being shared from the other person’s heart.
We learn to think as she thinks and know that she has not learned to be malicious, so we subconsciously edit out the bad and highlight the good.
She did not mean to kick or poke.
And when she bit, she was learning and discovering.
We translate those three little sounds instantly into “I love you”, because that is what she means.
We know and interpret the meaning of her cries.
Through observation, we know her to be one of the most thoughtful, feeling people in the world.
What sort of sling do you use?