> The Beesley Buzz: Keeping it real with ASD and JIA

Keeping it real with ASD and JIA

Gone are the days where my blog is my positive little space, where I try to share mainly the good news. The reality of our lives is that there are days when I feel totally heartbroken. 

Saturday was one of those days. Miss T has enough to contend with battling with her JIA and the weekends are especially tough.  We've moved her injection day to Saturday as we didn't want it to spoil her whole weekend. It used to be Friday evening, but then the nausea would often hit on Saturday morning so by switching it to a Saturday afternoon at least she can still get to her drama class on Saturday mornings. 

But the nausea does still hit her - more often that not lately. And it is heartbreaking to see her take herself off with her sickpot and deal with it herself on her own without making any fuss at all. This was her on Saturday and after weeks and weeks of telling people that 'Miss T is doing fine' and quietly hoping that things will improve I finally took to instagram to show what the reality of weekends is like for kids with JIA... 

Sometimes it is a bit of stomach bile and we see her shudder as she brings it up, sometimes it is just a feeling of nausea and thankfully nothing actually comes up, and sometimes it is full on vomiting. 

We haven't yet figured out why sometimes it is worse than other times - it doesn't seem to matter what time she eats or whether she eats before or after her injection. We do notice it is worse if we have a car journey the following day as it seems to cause travel sickness. Sadly she doesn't react well to taking any anti-sickness medication and that can actually make her more sick - We've tried phenergan, stemetil and even odansetron. She hates the taste of taking them and she does seem to vomit more on the occasions where we have tried giving these meds. 

So back to Saturday, not only did she have her usual sickness struggles to contend with but J had one of his big ASD meltdowns - this seems to have become the norm at weekends and it is tough on all the family.

Miss T took herself off and came back with this note which brought tears to my eyes... 


"When Josh gets angry it's like a storm and the waves crash together. They go up and down. Sometimes I get scared. When Josh gets angry I just want to go upstairs. I don't know what to do."

And I find myself heartbroken and lost for words for how to help her. And how to help him. And I don't know what to do either.


2 comments:

  1. Oh bless you that is heartbreaking. She is amazing, and objectively, I'd say it's fantastic that she's able to express herself rather than bottling it up. It's those moments though, that make you stop and take sharp breath as the reality of everything hits you. You're doing an amazing job with them both x

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  2. Sorry I'm only just reading this, although I did see your Instagram pics. Poor miss T, it must be so hard for her. That letter is so sad. I think that J will calm down soon, I remember my son was just the same at his age and his little sister was terrified of him. I felt lost and didn't know what to do. But things did get better, and as he has got older he has improved a lot. I really hope it's the same for J. xx

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