Sunday, 12 June 2016

The Grey Area.

The grey area.


The time between when your health visitor fills out the red flags questionnaire and tells you your child has communication difficulties and the journey starts to when you finally get a diagnosis.

That's where we are stuck!

Although it's not long until our assessment now, we have been struggling along since around September last year. We knew something was wrong very early on and the health visitors knew too but between the paediatricians and the psychologists and the physio and the health visitors we don't seem to get the real help that we so desperately need.

Bee is a funny, lovable , very clever little boy with the ability to talk (the last few months) but can't answer you back other than 'yes' or learnt speech - he also has the most epic violent meltdowns involving teeth which is not easy.

We have been told once he has a diagnosis we can go on courses or get help from the charities but now.. The grey area.. There is nothing. Things have not been properly explained and the wait for the assessment feels like a million years at the moment.

I wish that back at the time we were told he wasn't developmentally where he should have been that the HV gave us a pack of information of who can help, where to go for advice or support etc because we were just left to find out most things for ourselves and it was a very confusing and lonely time. 

Now he is getting older things are definitely getting harder - amongst the communication issues is a stubborn Scorpio little 2 year old! I do fear for my sanity!

I'm just sad that more could be done to support families during this time so people like me wouldn't feel so alone.

15 comments:

  1. Maybe you can help get a pack of info together for all the parents that will have to tread the same path in the future. X

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    1. Yes! i've been thinking this and will talk to my HV about it x

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  2. Oh bless your heart Laura. It's so hard when you have to wait for something for so long. I hope you get a proper diagnosis soon so that you and little family can start moving forward.

    Louise x

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    1. Thanks lovely, will make everything easier when we do as we will finally get the support we need xx

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  3. Oh bless you Laura, I can totally sympathise. My three year old son has had speech issues too and has only really begun talking in the past few months but he still gets stuck and frustrated which cause him to act up, etc. We're also in a grey area right now and it's a lonely and worrying place as a parent, especially when you're waiting for a diagnosis. I hope you and Bee can get one soon and the help that you need x

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    1. Thanks Fiona, sorry you are stuck in the same place as us! I hope you get your answers soon too. I'm always here if you need a chat or a friend xx

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  4. Oh I am sorry to read this. I hope that you find the support that you all need x

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  5. I can't even imagine how stressful that must be, just the waiting and not knowing what to do or where to go for support - I also second the idea of putting together the information you do find and suggesting your HV hands that out in future to keep other people from the same frustrations.
    I have friends in the grey area right now too and I wish I knew of something to say or suggest for them, it's such a limbo :/ xx

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    1. I'm definitely going to do that :). I hope your friends get some answers soon xx

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  6. Ah this limbo period sounds so difficult. I hope that you get some answers and support soon.x

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  7. I know how hard it can be to be in that limbo stage, I really hope you get some answers soon. Keep persevering lovely, it'll get easier. xxx

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  8. Bless you. I can relate a little though. My daughter {now 3 and a half} has delayed speech, all due to a severe tongue tie that wasn't picked up until one month before she turned three. During her what-was-meant-to-be her 2yr assessment from the HV. Now we're doing everything ourselves. The NHS are doing nothing, or at least nothing at a speed that is required anyway. We've seen Speech and Language once. Once! It's shocking. I do hope your little man gets what he needs soon. Just keep pushing for the answers hun x

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  9. Oh no Laura. My boy also had a speech delay. As a first time parent you don't seen to think of these things and freak out when you hear he needs to go to speech therapy but it really helped him and he won't shut up now lol I hope you get the definite answer soon

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