On Wednesday, Lucas will be admitted to hospital for open heart surgery. Details on what and why can be found in the blog post here.
We delayed telling the children as their ASD makes anticipation and anxiety all encompassing. Doing so felt very wrong. We have known for weeks, as have family members, but we didn’t want Lucas having to go to weekly boarding school with this on his mind, nor did we want Isla’s already difficult school time made harder. In preparation, I wrote a social story for each of them, created a communication booklet for Isla, and cherry picked the info relevant to Lucas from the booklets the hospital gave us.
They broke up for Easter on Thursday, and we told them after dinner that evening. Lucas (13, so dealing with puberty on top of his diagnoses and medical issues) got very upset, and then very cross. He is blessed with the ‘obsessive’ qualities of his ASD diagnosis, so is often able to distract himself with YouTube videos and games of Bop-it! Since then, he’s quicker to get cross than before he knew, sporadically very tearful, and asking for lots of cuddles.
Isla (8), pretended to think it was “brilliant”, but asked to leave the room with me and immediately dissolved into tears. She has been very unsettled, angry and restless since. She also won’t discuss spending time with anyone except Iain or I, which makes life even more complicated! Her Sensory needs are through the roof- at present she is in bed (not sleeping) with a weighted blanket, vibrating snake, ice pack, fan, chewy toy in her mouth and iPod on!
Due to the nature of the heart ward, we don’t find out for definite whether we get admitted til Tuesday eve, nor do we get any allocated accommodation til we are admitted, all of which adds to our stress enormously. The admission was already postponed- we should have gone in today, so we are dreading them delaying us further
To top it off, my brittle asthma has flared, and I’ve spent most of the last 3 days in bed on nebulisers, so Iain has been dealing with almost the entire thing! Luckily, I bought bits and pieces last week, and we have tomorrow to pack.
It feels worse this time than when he was a baby! This time, his emotions and understanding play a huge part, as does the fact that he is very bright and institutionalised medically, so there is nothing that gets past him re cannula’s (his worst fear!), blood sugars (ditto) etc. Also, Isla isn’t really able to deal with any of this emotionally- no 8 year old could, but add in the ASD dx plus her anxiety state and her belief that she needs to ‘care’ for Lucas, and we have, frankly, a mess! We have had advice about how much to involve her (not much it seems!), and family and friends are being super about support, but it’s the school holidays, and she can’t or won’t go with anyone else, so we’re just hoping that she copes with the whole thing.
I’m planning on blogging through it if I can, as I know my asthma is triggered by stress, and I think writing helps. It’s also a good way of keeping in contact with those who care when we have little energy.
For now though, here are photos of our precious children. I wish like hell that they didn’t have to go through this- it’s one of those times when we can say ‘it’s not bloody fair’ and absolutely mean it.
P.s- if anyone fancies sending Lucas and Isla a card, we will be on E1 (Ocean Ward), Southampton General Hospital. I’m sure they would love it!