Expletive on a cake

Could you ever imagine what it must feel like to have your entire speech, language and communication skills taken away from you forever in a split second?

It’s difficult to imagine isn’t it? But sadly, this happens to many people across the globe each and every year.

No-one is exempt.

Age, exceptional fitness levels, wealth etc. provides you no protection. Any one of us, at any time, can be affected through a severe and catastrophic head injury – a car crash, a fall down the stairs, medical conditions such as stroke, cancer or disease. The list is pretty endless.

One minute you’re feeling wonderful and enjoying your life; laughing and playing with your kids in the park, spending time with friends and family, commuting to work and moaning about the traffic or the weather and then…click…your life completely changes forever and things will never be the same again.

But we can’t dwell on the prospect of this happening to us can we?

(Sorry if all of this sounds a little morose but try and bear with me on this….this post is probably a little like childbirth: pretty painful, but after a good old gulp of gas and air it hopefully gets a little better!)

So, try and imagine what it must be like for a child, like Hannah, who has no speech or language and limited communication skills, who’s trying hard to make sense of the world around them but being affected by a chronic neurological condition hinders their ability to process information like an average child.

It’s difficult to imagine isn’t it? I know it is, even for me.

You wouldn’t be able to write down/type or verbalise even the basics of what you wanted, needed, or how you were feeling; you couldn’t tell someone that you don’t want porridge again for your breakfast, that you feel really poorly, that the cold weather hurts your face or that you’re finding it hard being around lots of people and really want to go home where you feel safe.

Given Hannah’s significant developmental delay she isn’t ready to use pictograms or any other visual tools to aid communication. Since her birth I’ve used speech and some basic sign language with her even if it isn’t reciprocated. The only signs Hannah has mastered to date is ‘more’, ‘drink’, ‘raisin’, ‘finish’ – but often needs prompts. Her signs aren’t always spontaneous and sometimes are used in the wrong context. She gets confused. Every sign takes months to learn and oodles of patience and Hannah is often unable to model the sign the way it’s intended. But that’s ok, because we’re learning together to modify them and think outside the box. I’m so overwhelmingly proud of her determination to succeed and I guess the most comforting thing for me right now is that I think she gets the concept of communication – that she has to do something with her hands or arms or fingers to get a particular response.

Her lack of speech, language and communication skills aren’t as a result of her cleft palate. It’s more likely because she has Cornelia de Lange Syndrome. Sadly, she may never develop any speech and if she does then she may only develop one or a few words or become electively mute. The research papers also suggest that when she’s in pain she may self-harm rather than articulate how she’s feeling. Hannah already self-harms and so I guess this may increase as time goes by.

The prospect of this absolutely breaks my heart and the older Hannah gets, then the more I become aware of (and worried about) her communication difficulties.

I still (and probably always will) ache to hear her call me “mummy”. But as I’ve said before, I guess that’s too much of a big ask and that’s about meeting my need, not hers. So it’s a little selfish really.

There’s no cure or solution to this; only time will tell what the future holds but I will ALWAYS live in hope and I’ll never give up on her. But my need for her to speak extends farther than wanting to hear her voice because she needs to have some form of communication in the future to get by in life and survive. It’s not a luxury item she needs…it’s a necessity.

My message to you if you’re just starting out on your journey with your child is never, EVER give up hope. Be realistic, of course. Take advice from experts if you need to. Research. Be patient. Be creative and think outside the box…and don’t ever stop having aspirations for your child.

My husband and I have shared our thoughts and feelings about this subject on many occasions and we’ve come to this conclusion: If Hannah was able to learn to say only one word, we really wouldn’t care at all what that word was…it would just be utterly heavenly to hear her speak…even if that one word was an expletive (although I really, really, REALLY hope it isn’t an expletive!!).

And if that day ever came, there would be a party, with balloons and food and lots of laughter and happiness and yes, you guessed it…with pride of place on the buffet table would be a beautifully decorated cake with ‘the word’ iced on the top in HUGE letters…even if it’s an expletive!

If that day ever comes dear reader, I’ll post you a photograph of the cake. That’s a promise!

This post is dedicated to Geoffrey, who hopefully lived his life exactly the way he wanted to

This entry was posted in Speech, language and communication, Syndromes/Special Needs and tagged , , . Bookmark the permalink.

4 Responses to Expletive on a cake

  1. Beautifully written Anne & so very touching x

  2. Ellen Noblet says:

    Since reading your blog I just want to say thank you. Thank you for helping me have more patience when Jessica is prattling on about her minecraft game. For being more patience at bed time when she calls me to go back into her for another kiss. For having more patience when picking up the clothes the toys that she leaves all over. Because I know you would give anything to do any of these things. It’s so easy to get frustrated with your child when all you want is 5 minutes peace, or just to have a hot brew instead of picking up stuff absently dropped, or even to get your child settled in bed so you can finish the ironing. Thank you for making me realise just how lucky I am. You know me well Anne, I don’t patronise and this is not my intention with this reply. Just, well Hannah is a blessing not just to you an mark, but everyone who reads this. It may take her a while to learn new things but her teachings through your words are immediate. Take time to appreciate our children. Each is unique. Each is precious. Each will teach their parents many things……….if we just take the time to listen. Much love Anne as ever. Xxx

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