Impacts meeting for Holly

Sue and I attended an Impacts meeting for Holly today.

We had all the professionals in Holly's life there - speech and language, paediatrician, physiotherapist, dietician, and occupational therapist. Only person missing was her play therapist.

We sat around a talked about how we all thought Holly was getting on with health, feeding, development, etc. and if there were any concerns.

It was quite a good forum for everyone to get to understand Holly and her condition from all angles and get a better idea of the big picture.

It was also encouraging to hear from all the professionals there that they thought Holly was making wonderful progress and that some of the concerns Sue and I had (like Holly not really taking to the sippy cup all that well) were to be expected for a normal child of her age. She's not out of the woods yet though, as her development is still behind a "normal" child of her age.

We are going to reconvene in 6-months time to see where we are with Holly's situation.

End of dry times

Every good run comes to an end.

Since Emily's been going to school, she's been nappy-less during class. Not only that, she's been completely dry. This has been going on for over a month, even when she went full time starting last week.

However, when she came home today we found out she had two accidents. Sue and I aren't all that worried, as one bad day in over a month of going nappy-less is quite remarkable.

Nappy is dry on arrival

As per Rainbow's request, Emily spent most of the school day without a nappy.

My original fear of her bowels having their own way on the ride to/from school was for naught, as the "nappy-less" experiment was to begin once she arrived at school, not on leaving home.

From what we've seen, things worked well today. Rainbow asked us to check if she was dry (or more exactly, if her nappy was dry) when she got home. Which it was.

Here's hoping this is the start of the end regarding potty training. It's been a real pain in the arse.

Holly is "Chatty Patty"

Holly. Things are going well.

Over the last few days, Holly's really started coming into her own and developing her own voice.

Neither Sue nor I have a yardstick to measure her development against, with Emily's autism viewed in hindsight, but I'm not sure if things DO happen overnight.

Sue and I have been trying to get Holly to mimic us, doing the "buh, buh, buh" sound and shape with our mouths, but recently, Holly's started "talking" to us. She's also developed additional cries. She's previously really only had the "I'm awake feed me"cry. This has now been augmented by a sort of "I'm here, play with me" cry that's not as intense.

It's very interesting seeing the development of Holly and even the experts are saying they're seeing quite an advance in her behaviours, etc.

On the flipside, she still has more movement than she needs and there's still concern over this. Over the past months, Sue and I have learned to take any silver lining as a silver lining though. I'm just happy something good is happening.

Nappyless for Emily? Finally?

Nappies. Good riddance finally?

Emily came home from school today and Sue informed me that her teach would like her to start going in pants only.

My first thought was "what does she have against skirts?" Then I realised, she meant no nappy, just underpants. My second thought was, "what if she fouls up the taxi on the way to / from school?"

This COULD be a big step for Em and one I'm not sure she's ready for. We've been potty training for her for what seems like an eternity and she has been getting better lately. However, she still has the occasional nappy that's incredibly heavy, so we're not capturing everything.

If school think now is the time, Sue and I are more than happy to work on their plan.

Em's first day of school

She's done it before and she'll do it again, but today Emily started school.

This isn't nursery or whatever Dragonflies was, this is "reception". In my day we called it Kindergarten. A full day of teacher supervised play, basically.

Em looked very smart in her Green Wrythe Primary school uniform as Sue and I both took her to the school gates. Em being a little girl was a bit freaked out that we were handing her over to some strange woman in a building she'd never seen, but given how easily distracted she is, I don't imagine the freak out lasted long.

Em's doing half days this week to get her adjusted to life as a Red Squirrel at the Rainbows Opportunity Base and it'll be full days from Monday on.

End of holiday

For the past two weeks, I've been on holiday in Canada without the girls. Sue took both Holly and Em to Australia on Aug 8. They arrived back today and I'm going to be back UK-ways tomorrow.

The original plan was for Sue and the girls to go to Oz for three weeks, a trip I couldn't afford time or money-wise. While they were swanning around the Southern Hemisphere, it was suggested I make the best of the time and come to Canada for a couple of weeks, which I have done.

I've Skyped the girls almost daily and it looks like they're having a good time. Holly, in particular, seems to be more alert and erect, which is good, as her back muscles were part of the area that needed work. I've been watching and rewatching the videos I have on my phone and Youtube of the girls.

It's given me a sort of insight into what it would be like if all I had to remember the girls was these videos and photos. A reality with Holly that was almost too real. I'm really glad this particular situation has a happy ending.

Em starts big school in a couple of weeks. She'll be a fulltimer at Rainbow Opportunity Base at Green Wrythe Primary School.

Between now and then, we have one more big transition for the girls - moving house. I got the keys on the 14th, while they were in Oz, and have moved some stuff over so far. It's going to be quite a busy few days when I get back moving the rest. It will then be an even busier few weeks after that adjusting Emily's routine.

Between coming back from holiday, moving and starting a new school, it's probably more than she will be able to handle. I'm hoping in this case, I'm proved wrong.

Wrong use of words

Emily is not the most verbally communicative child there is. She has a lot of words, but a lot of them are in the context of songs or books.

We are making strides with her and there are a number of things she says in the proper context. Unfortunately, there's still quite a lot of "what the hell?" phrases she uses completely out of context.

"Call me good? I'm the scariest creature
in this wood"

At the moment, if she wants to be picked up, she doesn't say "up" or anything remotely similar to that. She stands in front of you, arms up and says "call me good". This is obviously in reference to the Gruffalo, when it's dangling the mouse about to eat it, as it'll "taste good on a slice of bread". I guess she equates me picking her up with a monster about to eat a harmless creature.

Cheers.

The other word she's using quite a lot out of context happens when she's upset. If things aren't going her way, she'll look really upset and yell in a high pitched tone "home time". Before you ask, this generally occurs at home, so no need to race her back home. The only thing Sue and I can think of is they used the term "home time" at Dragonflies, but I imagine it was never under duress.

These are all added to her frenzied use of "yeah baby" when she's got the upsets on as well.

I'm sure there will be a further list of words she uses that we'll need a translation guide for. In the meantime, we're just trying to keep our language simple and stick to very basic words for everything. Basically, taking the fun out of the English language.

Who said Autism wasn't awesome?

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Holly's first tooth

Holly's been dribbling like a maniac for the last few weeks, which is generally a sign for a number of things, including teething.

This morning, Sue yelled through to me quite excited that she could feel a tooth coming through. This would explain the dribbling. We bought a box of "toothy powders" a couple of weeks ago as we assumed the dribbling was caused by this, but now we know! Queue the screaming pain as the teeth start poking through. 

With Emily losing teeth and Holly's coming through, it's quite an oral time in the John household!

A bit of an audio breakthrough

Emily, being the sensory beast she is, doesn't like anything near her head. Sunglasses, ear muffs, ear protectors, headphones, the list goes on.

For the sake of her's and Sue's sanity on the plane ride to Oz, I've made it my mission to get Emily used to wearing headphones, so she can partake in Singapore Airlines' onboard entertainment system. Otherwise, it's going to be 24 hours of bored Emily, which NOBODY wants.

This week, we finally made a breakthrough.Emily was in that dozy tired state she gets in to when she's tired. Usually at this point, she's more amenable to new things than she is when she's all hepped up and ready to bounce.

I put Dora the Explorer on Netflix on the laptop, but had the headphones plugged in. Emily was quite excited at seeing Dora, but confused at not hearing it. When I put the headphones on her and she got the whole sensory experience, she didn't want to fight the headphones any more.

This is a BIG win for us, even though she still wants to run out of the room - with headphones still on - when the map bit of Dora comes on. I need to persist at this and introduce different shows, and probably different devices so Emily doesn't just associate the headphones with Dora on the laptop.

This does show great promise for a less hellish trip for Sue and the girls to Oz though.