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.