A Mothers Ramblings: Putting Things In Place (Part 5)

Friday, 3 August 2018

Putting Things In Place (Part 5)

Since Top Ender's first meeting at CAHM's, Flyfour and I have read everything we can about ASD. As we've been reading we've occasionally pointed things out to the other that we have found interesting or useful or in the case of one book written to the library and suggest they no longer issue it as it was so stupid and completely contradicts everything else we've read (I shan't bother repeating the rubbish that was in there, sufficient to say the Library pulled the book and if they hadn't I was prepared to accidentally ruin it by spilling something on it).

PippaD and Top Ender

I've taken a course, I've joined Facebook Groups, I've reached out to friends, I've spoken with countless teacher friends, medical professionals, I've read websites, blogs, watched TV Shows and most importantly we've spoken as a family. We've discussed what helps Top Ender, what doesn't help, what makes her feel safe, what doesn't.


Honestly, I feel like a new parent all over again. Just like when Dan Jon Jr was diagnosed as having Type 1 Diabetes, we're learning a new language and how to further adapt our family to ensure that Top Ender and Dan Jon get the support that they need.

We've spoken with School, who have set up a few different things for Tops to make School a better experience for her. We've spoken with her Guides leader, to let her know, although she was one of the ladies who guessed before we did and so was already doing things to support Top Ender.

We've spoken with her Young Women's leader at Church (well, now that's me so I've spoken to myself too!) and to the people running the FSY Camp (For the Strength of Youth) to ensure they have the correct support for Top Ender, should she need it whilst she is there.

We've not had to change much at home.

I mean we've changed the way we request things of Top Ender, giving her short simple and direct instructions instead of generalised ones. "Tidy your room please" has changed to "Please pick up the rubbish from your floor and put it in the bin" and then a few minutes later a further instruction such as "Please put clean clothes away and dirty clothes in the wash box"

We already had a shower schedule and checklist of things to do before school, when home from school and before bed. We'd adapted without realising it.

And we know we are lucky. We're lucky that Top Ender can verbalise what is wrong, what support she needs. We know we are lucky she was diagnosed. We are lucky that we have friends who understand, that we have a support system for her in all areas of her life.

Mostly though, we're lucky we have our beautiful girl in our lives.

Top Ender, our daughter