Other agencies....

These are called 'outside agencies' by professionals and by us parents - nightmare!

Sometimes they are so so welcome, even sort out by us parents. Then there are the times when, due to all the horror stories, we never ever want their attention turned our way but it's taken out of our hands.

Those times are the ones I really - I mean REALLY - hate the people who think they can put their opinions above that of the family (yes, this has happened only once to us). For those times when they are welcomed with either wide open or slightly ajar arms, they can make or break your day.

For example: here we have Parent Support Advisors and we have dealt with 2 different ones due to locations. Both women have made a huge difference to us as a family; our current one keeps us on our toes (in a good way 😀) and is always willing to try alternative routes to get us and R the help, support and understanding we need - desperately!

Then you have Occupational Therapists or OT, these men and women when dealing with a family like ours, are true saints! I say this because ours is a community OT so deals with all of us. She listens to R (who does not stop talking) whilst treating me; and I don't stop talking to her. Mainly because loosing independence is hell socially lol.

Another agency we haven't met outside of a hospital and wish there were more working alongside other agencies, are the play therapists - play as in toys! Most people I know do not understand why I wax lyrical about these people but it's because life can be overwhelming for anyone, but especially for someone like R. These people can pop up just when you think 'I'm gonna loose it any second now!' They never take themselves or the kiddos behaviour that they deal with seriously.

I remember the first time we ever met one of these saints. It was before we had H and R was in to have his tied down testicle operation site checked. In a new hospital, new clinic and FULL of noisy kids and shouting parents, not a good environment for R not to blow his sensory gasket. I think he could pick up on how tense we were about how he would handle this all, which wasn't well at all!

As he started to blow and throw toys around and generally scream, cry and sensitive to touch - in walked this clown. Yes a CLOWN - curly red hair, red nose, even a water squirting flower! He walked up to R and crouched to his level - que deep intake of breath as visions of R hitting this bloke in the manly bits - turned to him and said, 'Well now I'm Dr Hoothill, and that's my patient you are throwing around. May I do my checks now?'

Now I bet you are there thinking 'this is where the poor man gets decked out', nope that didn't happen. R just stopped everything - I mean EVERYTHING - and turned to him to hand him this truck with his questioning look then signed yes. R avidly watched as this guy held a stethoscope to various points on the truck, gasping every so often and talking to the truck like he would a child. Dr Hoothill (still makes me giggle now), then handed the truck back and said 'Thank you, he's all better now. What's your name?' Now R only had a handful of words at this point and used them right here shocking us both, 'Roman Rees Carey, pretty flower'.

The guy then lent forward for R to sniff his flower and pressed the button to action the water. I truly thought R would scream blue murder, he just giggled and pushed the button again put in the mans face - most adults here would be horrified they got wet, not this man - nope he belly laughter then fell on his butt making R giggle more. Saying good bye he walked to us and said, 'What a fabulously happy little boy you have, well done'

I will admit right here, I cried! This just shows you what a MASSIVE difference an understanding and accepting adult can make to the PARENTS, let alone the child or children. This man, who didn't know us or R or even why we were there, accepted that R was struggling with the environment. Instead of insisting R be moved to another area, he just made the environment more friendly to R's mind. Then just topped it by accepting that we were struggling alongside R but we're doing the best we could.

Always this moment sticks in my mind when a new outside agency is introduced, because you will never know when the one person will make such a difference.