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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