The day we wished would never come! 

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.

‘Talk’ soon,

Sarah 

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!

   
 
  

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Xmas poem

  
MERRY XMAS!!! 

On Xmas day, we will not pray, but to all, we definitely will say
“MERRY XMAS, now when can we play?”

If it snows, we won’t doze

If it doesn’t snow, we’ll say “oh, no!”

But whatever the weather, we’ll have fun together

With Grandpop and Rose

And all of those

Who make us smile

All the while

Because they are our family! 
By Isla Murray 

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Heart Break 

  
So much has happened here lately, and I seem to have curled into a little hedgehog about it.

Our biggest news is that Lucas’ heart is struggling as he has grown, so we are looking at more open heart surgery in the next few months. Even though we knew it was coming at some point in his teens, we were reassured by his last meeting, so to get a call at 8pm one evening saying the MRI has suggested his right side of his heart is now working so hard it’s twice the size of the left was a real punch in the stomach. 

Here’s info about his condition: 

He has a congenital heart defect called Tetralogy of Fallot, which was operated on when he was 5 months old.

Normal heart:      


Lucas’ Heart:

 

Now, his pulmonary valve is leaking and needs replacing. Due to his previous surgery they can’t attempt to operate through the groin, so  it will be another ‘chest-open’ job. His Septo Optic Dysplasia puts him in an incredibly high Rick category! 

Last time:

   

  

  


So to say we’re scared is an understatement.

This info is from the British Heart Foundation stating what will happen this time:

“What will happen during a heart valve repair or replacement?

In most valve operations, your surgeon will:

-reach your heart by making an incision down the middle of your breastbone
-use a heart-lung machine to circulate blood around your body during the operation

-open up your heart to reach the affected valve, and

-perform the repair or replacement.

How long will it take me to recover?

If all goes well, you will be helped to sit out of bed the day after the procedure. You can expect some discomfort after your operation and you will be given pain relief medication. Your pain level will be monitored to make sure you are as comfortable as possible. Many people return home within about a week. On average, it takes between 2-3 months to fully recover, but this can vary greatly as it depends on your individual condition.”

Added to this is the fact our lives keep on turning with shit stuff- my chronic illnesses, Islas fight for an ASD diagnosis, Iain trying to keep us all together, life is frankly a bit much atm, hence lack of posts. 
Love Sarah xx

  
 

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Bracing ourselves!

  
Apologies for the pun- we’re having a pyjama day here (our very first one), so feeling a bit woolly brained and silly!

Yesterday, after years of waiting, planning, appointments and lots of discussions, we took Lucas to have braces fitted.

The issues: He has a massive over-bite;  his bite is too deep; His lower jaw is too far back; his mouth doesn’t have space for all of his teeth; The roof of his mouth is incredibly high and he has an extra set of gums behind his front teeth. His speech and his eating is affected.

He is orally defensive, and as a Visually Impaired child with Autistic Spectrum Disorder and Sensory Processing Disorder, it was a very big question whether we should get him braces. 

On the one hand- we could argue that we are doing it from a practical point of view- if he eats and speaks better, life would be easier.

Also though, and this one is much harder to voice and admit – it would make him look more ‘normal’. I’m wincing writing this- how very rude of me, judgemental and oppressing. Yet- when we realised he had many disabilities, and would need our support more than the average child, we decided that we would have to make appearance decisions for him, and we felt we owed it to him to help him not only look his best (which no one would argue with), but more- we had to help him fit into societal norms as much as possible.

If aesthetics were the only reason, I’m not sure that we would have put Lucas forward for braces. Perhaps. I know that, having spoken with friends with children with disabilities, most of them wouldn’t do what we’re doing. I’m not sure it’s right, and I hope Lucas sees it as a good thing when he’s older. Right now, he’s not very keen!

We took some photos of him in the dentists chair yesterday, but he has deleted them from his iPad as he was very cross. He has an upper Twin Block Brace which is definitely not an easy start.  

 
It has a very large plastic plate which makes closing his jaw difficult, and its chief job is apparently to create space for the molars to grow into, which will decrease the depth of his bite. As it stands, his lower incisors are practically touching his top gum. It’s causing dribbling, pain and speech issues. It needs to be in 24 hours a day.

That said, we are only on day 2, and he has eaten solid food! He slept ok, and isn’t in very much pain (he has refused pain killers!). He’s very grumpy still, but hasn’t asked for it to be removed (although reinserting it after brushing was tearful!). Best case scenario is he copes well, and we move to a different kind of brace in 3 months, although they aren’t being very forthcoming about the ongoing plan, so I’m half- imagining this: 

  
(Let’s hope not!). 

He was happy to pose for a photo today, and for me to share it. We are really proud of him, and have bought an especially good Bop-It as a reward! We will update his progress so we can follow the journey through. 

 

I shall finish with this from Iain’s Facebook Status:

Lu got his first brace yesterday. He was a bit worried about not being able to eat anything. Sarah said “Can’t have chewing gum, fizzy drinks or toffee and you don’t like any of those things”. Cue Lu sharp intake of breath “What about champagne??!!”. Passing Nurse asked if she could come and stay at our house. 

Champagne is fine, right?

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Mini Me’s

  

  
I have a very talented friend Suzi who makes the cutest dolls at Munchkin Munecas. She shared some stunning drawings of paper doll versions of her daughters, which she had printed onto magnet sheets for her girls to play with. 

Awaiting the birth of her third beautiful baby, and a little stir crazy, She offered to draw Lucas and Isla. The results literally took my breath away. Her attention to detail is stunning, and she was incredibly honest yet respectful when tackling Lucas’ dysmorphic features, and Isla’s non-binary gender identity. She spent hours trawling through photos of my two to check what their favourite clothes looked like, and she even drew our dog Star!

I was saving the images for Christmas, but both chids had a really hard day on Friday- Lucas (massive oral hypersensitivity!) had mouldings for braces, and Isla’s TA wasn’t available to meet her at school, and she refused to enter the building. So- I grabbed the pictures, printed and laminated them, and Mini-Lu and Mini Illy were born!  

 I cannot tell you the impact they had! Isla has real issues with her self-confidence- often saying she ‘hates herself’ and that she is ugly, but she was totally enamoured by Mini Illy. She saw how pretty she was, and as she hugged her tight, I was able to tell her that the way she sees Mini Illy is the way we see her- gorgeous, funny, brilliant!

 Lucas was super chuffed that Mini Lu had a cane and sunnies, and has spent the weekend making sure he gets matching clothes out of his drawers and getting Isla to dress Mini Lu.

Mini Me’s have come out with us all weekend- and it’s the first time the children have engaged in proper pretend play that I can recall for at least a year. The Mini Me’s have voices, they chat, and the chids are asking for beds, a house, even a theme park.

Suzi, my amazing friend, you have been warned- their wish list for Christmas is growing, so start thinking of a pricing structure!

The possibilities in this type of play for children with ASD who naturally are ego-centric, who struggle with identify issues and pretend play is enormous. I cannot recommend this idea more highly. I am planning on using Mini Illy for lots of visual props for Isla, and will make sure Mini Lu supports Lucas through braces and medical appointments.

Thank you Suzi, you talented, wonderful friend.

Love Sarah xx

#toylikeme

#blindkidscan

#ASD

#visualimpairment

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Social Stories

Well, it seems every change brings about a predictable but still disappointing regression in Isla’s coping strategies and emotional resilience. This past week she has had to be physically pulled off me screaming by the TA, who claims “She’s always fine within 2 minutes”, yet I can see and feel Isla’s core cracking slowly. On pick-up she’s either brittle, angry, or over-compensatory about how brilliant her day has been- yesterday she announced with gusto that it had scored 20/10 by being so amazing, then in the next breath she said that although she hadn’t cried, she had felt close to tears for 5 hours. I’m sure none of this is the whole truth, I’m also sure she doesn’t actively lie about these things, but her emotional literacy is so poor (and she’s such a bright erudite, literary child) that she can’t even fathom her feelings out, never mind relay them to me.

Anyway, old habits are back to haunt us, and the head caught me to say that Isla is refusing to go to the bathroom all day (she has directly lied to me about this!) so I’ve written a social story which hopefully will interest her enough so she doesn’t roll her eyes at me tutting, but which will do the job. Sharing for anyone to use/change as they choose.  


   

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Don’t Mess with the Stick

Love this!!! Hoping to have Meagan guest blog for us soon.

Where's Your Dog?

While I’m not nearly as attached to my cane as other blind people are to their guide dogs (for obvious reasons) I still like having it around. It’s my mobility tool of choice, and it works well for me. More than that though, it represents security. A cane will almost always tell me what’s directly in front of me. It helps me walk in a straight line, because I can trail along walls, sidewalks and so on. My cane is a major contribution to my independence.
The cane is called many things, some of them peculiar: I’ve heard people call it my “helper”, “walking pole”, and even “special friend”. One older gentleman approached me and asked me whether I hike; “I have one like that, too,” he gushed. It’s hard to keep a straight face, let me tell you. I don’t mind if someone refers to it as my “stick”…

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