When optimism escaped a break through

DSC_4500Scarlett’s speech has been my main concern over these last few years.  In the beginning as she joined in singing the nursery rhymes and as I proudly paraded her use of language in front of the community pediatrician to nods of approval, I didn’t at that moment in time think that now at aged nearly six years old that Scarlett wouldn’t be speaking fluently.

I enjoy talking, explaining and articulating!  In fact I actually struggle to shut up!  So, I thought myself and Scarlett would make a perfect team.  You see verbal communication seemed like a very important exchange between myself and my daughter.  I was always determined that for what she lacked in sight I could compensate with being able to deliver intricate descriptions for what she was unable to see.  I was ready and raring for the plethora of questions, excited in fact, to be able to fill in the gaps.

I have always tried my hardest to deliver a descriptive commentary to add to Scarlett’s life.  We were told very early on by the services that this what important and so I did it, all the time, every waking minute of the day and tried to encourage that people did similar when they interacted with Scarlett, always encouraging lots of use of language and touch.  Scarlett’s significant sight loss is pretty rare in children and there is no option for her to get up close to have a look, so I always placed a lot of importance on the descriptions I could provide as it would be beneficial for her social and communication, especially her speech!

DSCF3861As time has passed it has become apparent that speech is actually not a certainty.  She has had lots of input from therapists in this area and everyone has worked very hard to help.  She is a brilliant little parrot, which is not uncommon in children who have a visual impairment and she is great at asking for biscuits.  Following a language explosion I thought it was about to all fall into place, but sadly that has yet to happen.  It is pretty frightening to be honest, verbal communication seems like such an essential to the life of a child who is visually impaired.  Following a visit to Great Ormond Street in January of this year, it was once again reaffirmed by the best professionals in the country, that speech may be just a pipe dream.  I have started to come to terms with it!  That is one thing, I don’t think I do bad at the accepting of it, getting up and getting on with it.

Basically the next stage in Scarlett’s speech we are missing is her ability to independently form fuller sentences and to be able to answer questions.  At the moment we have repetition and single word requests, you know I am always hopeful that there would be more after this stage, but I am very much at peace now with that being as far as she gets.  I think that outlook is so important and I really am a positive person, it literally is impossible to be anything but positive.  I’m sure that kid is omitting some kind of voodoo or witch craft, she’s like a little blond bubbly giggling affectionate personification of an anti-depressant! She seems to make everyone feel better.

Anyway, back to the title!

thedaytheworldgottoofeatVery recently after settling on the notion that speech may just be a pipe dream, she walked into the room and was playing by the side of me.  I asked her “did you have a nice day at school?” and she replied back very casually and as clear as day “we went to the park for a very long time”.  I nearly fell off the bed!  There was no mistaking what she said! She not only formed the longest independently spoken sentence I’d ever heard come out of her mouth, but she answered a question at the same time!  I know it may seem like something small, but I was literally blown away by that response.  Seemed all so very odd for that to come out of her mouth, lovely, absolutely taken a back, just a phrase of that length and based around that kind of interaction.  As I said earlier I enjoy articulating things, but how I felt at that exact moment in time I could never express in words.

So after plenty of cheering, kissing and hugging, and many, many, many phones calls sharing this wonderful news I stopped for a second and felt emotional.  Of course I’d be emotional, but not elated as I initially felt, more sadness, really sad.  I think after many years of expecting Scarlett to be able to achieve something and it hasn’t happened, my once ever optimistic nature escaped this massive breakthrough.  I started to think back to what the professionals at Great Ormond Street had said.  I started to think perhaps it was just a fluke, thinking of alternative ways in which that very significant little phrase may have made its way out of Scarlett’s mouth and it wasn’t in fact the genuine interaction that I had first thought!  Then I started to think, well you know what I’m glad I heard it, only if it was just that once I would ever get to hear it, I had that, would always have that and attempted not to get my hopes up that this pivotal moment in her life was the start of something more.

nuzzletsfeatured2Pretty sad that isn’t it, taking away from my own happiness, trying to not expect anything more to avoid disappointment.  That’s never really been the way I have operated.

Suppose after years of not really knowing where we stand with Scarlett and her condition going much further beyond her visual impairment it’s given my outlook a bit of a beating.

Now I don’t really know which way to approach it for the best really, think yeah here we go it’s all going to fall into place now, or just be thankful to have heard it once.  I really do hope that I am writing to you in the future blogs about how Scarlett’s relentless questions are driving me to the brink of insanity.

Only time will tell!

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