Emily's adult future with autism

While all children need help with things like bum wipes and having their meals cooked for them, I do worry about Emily will interact with the world as she gets older. I assume she'll be able to dress, bathe, cook for herself, etc. but I'm not guaranteeing it.

I've just found an infographic from NAS (copied below) that outlines what adults with Autism currently need compared to what they receive in way of aid. It's not really all that optimistic reading at the moment.

Have a look for yourself below and if you feel compelled to get your MP on the case, you can add your name at the National Autism Society website.

Random words. Could it be communication?

Emily has just come to be and said this seemingly random list of words:

Baby.
Swim.
Painting.
Sitting.
Planting.
Drawing.
Smartboard.

I'm just wondering if there's any connection here to what she did at work today. As I'm repeating the words to her in an effort to communicate with her and to string the words together ("drawing on the smartboard?"), Emily's becoming more animated and smiling quite a bit.

It would be nice if ANY of this was tied into her school day as communicating with her about what she's experienced would be a lovely thing.

Terrible story from Ottawa

I know how tiring it can be with two small kids with special needs. Sue, also feels quite sluggish quite a bit (which may be due to her medication). This means our spare time is usually filled with doing stuff for the kids or praying for bed.

I read a story today on CBC.ca about a family in Ottawa that just got to the breaking point of exhaustion and had to give their Autistic child away to the government.

I can't even begin to imagine the horror I would feel if that was my ONLY option left with Emily.

The article also made me start to extrapolate into the future - something I don't like to do with Emily. At the moment, she's dependent on us for everything, which children should be. As she gets older and peers become more and more independent, I'm afraid she'll remain dependent on us. In some ways I don't want her to ever grow up, so this disparity will never manifest itself.

I know every child is different and there's no guarantee how Emily will end up, but I still can't help but worry and reading articles like this only amplifies my anxiety.

Silver lining to the unemployment cloud

I've now been unemployed (outside the "gardening leave" state) for just over a week.

While it's utterly annoying to be without work, it came at a good time for Holly. It meant that I was able to attend her intensive therapy sessions without worry of missing work or having to take holidays. Unfortunately Sue could only attend the days she didn't work (Tuesdays and Thursdays).

We're looking at booking more intensive therapy in 4 to 6 weeks. I really hope I'm not still job hunting at that point.

Intensive therapy for Holly

Over the past two weeks we've been doing intensive therapy with Holly. Given that she's only one year old, this really means doing an hour a day for four days a week (she has Wednesday as a rest day).

Sue and I were sceptical and hopeful before we began the sessions that they would aid Holly overcome her movement related issues. At the beginning of the session we had to list some goals we had for the two weeks.

Happily enough, one of the goals - Holly sitting unaided for a small amount of time - was achieved long before the end of the two week session.

Both Sue and I are really ecstatic with the progress Holly has made and we've seen how tiring it has been for her to do the work, even for the hour session. Now that the two weeks is over, Sue and I have our homework to continue what we've learned, while going back to having the one hour a week session (plus the hour a week NHS session).

Sue and I were so happy with how things progressed that we're eager to book in another two weeks. This won't be for another 4 to 6 weeks, to give Holly time to take on board everything she's gone through these past sessions.

MMR jab for Holly

Let it be said that scare tactics do work.. sometimes.

In the case of the measles outbreak in Wales and its impact on our decision to get Holly the MMR jab, job done.

Sue and I had really been humming and hawing about whether to get the jab for Holly (it should have been administered about 3 months ago, around her first birthday), but all the horror stories of it opening the floodgates to autism were all too real for us to want to proceed any further.

It's really the lesser of two evils - the horrors that can come with infant measles (which are NOT nice) or a lifetime communication problem.

This hasn't stopped us videoing Holly in an attempt to remember the good times (and to have evidence if the worst does happen). We realise the evidence linking MMR to autism has been discredited, but when you read about people winning lawsuits, it makes you sit up and notice.

We're hoping for the best with Holly in all this, and if Emily wasn't an Autie, we probably would have no concerns. Time will only tell if we did the right thing. I'm hoping this is not yet another instance where I wished I had a suped-up Delorean.

Cease therapy for Emily

We've started Emily on the CEASE therapy homeopathic treatment. We've read up about it, and had a consultation and at this point we're willing to try anything to alleviate her symptoms, increase concentration, etc. etc. etc.

The only problem is (well, so far anyway), there's a LOT of pills for Emily to take in a day and a few of them are "horse pills". I've crushed them up and boiled them, but I still have to come up with incredibly inventive ways of getting them into her system.

Yesterday I added a stupid strength amount of squash to the pill mixture that would have drowned out just about any other taste known to man. That combined with one of her beloved bendy straws saw the entire mixture downed.

Not sure if I'll have the same luck today.

We're also supposed to start seeing some signs that the therapy is working. Others would call them side effects, but apparently as Emily releases the toxins and pathogens from her system all kinds of crap can happen (I mean that literally as well).

Here's hoping we get something meaningful out the back end of all this.

Therapy is paying off for Holly

Sue just called me with two pieces of excellent news.

The first is that Holly not only sat up by herself (which she CAN do when she really wants to) but she then sat unassisted for just over two minutes! This is fantastic news really. Her trunk is the part of her body that's letting her down and will most likely be the cause of issues for her in later life, so if she's able to control it already, things are looking up!

The second piece of good news is that BUPA have agreed to pay for another set of sessions. We WILL have to look for some money to continue the private therapy, but at least we have another 6 or 7 sessions sorted out!

All around good news then.

Emily's annual review

We sat down at Rainbows with a collection of professionals in Emily's life today to talk about her progress and to map out the next year.

All in all, I think everyone involved - head of Rainbows, teacher, and therapists - were quite happy with Em's progress. There's obviously a LONG road ahead, but we're no longer in the starting blocks.

Sue and I got to air some of our concerns that we noted recently with Emily - mainly the flicking of book pages and stabbing her thumb through them and pushing adults out of the room once she'd got what she wanted from them - usually a book or a Richard Scarry video on the TV. Everyone involved is going to work on some strategies to help Emily overcome these "issues".

We have a four point plan that we're going to work against over the next year that will hopefully push toward fulfilling more objectives on her statement of educational needs.

Holly died a year ago today

Holly, one year ago.

It was exactly a year ago today (3 March 2012) that we raced like maniacs from Sutton B&Q to the resuscitation unit at St. Helier's. It was a year ago today we were told that Holly was brain dead and there was no activity behind the eyes. It was a year ago today we were THEN told she was successfully revived. It was a year ago today we began our month's residency with the amazing folk at Evelina Children's Hospital.

I keep thinking sometimes that in a parallel universe somewhere (OK, I've been watching WAY too much Fringe lately) Alternate Sue and I are visiting a grave today and wishing beyond wishing that what happened hasn't actually happened. I can't begin to imagine what our lives would be like, what mental state we'd be in had the alternate reality happened. Thankfully we haven't had to find out.

Not to say the past year has been without it's problems due to this - we've had medications, therapies as well as a diagnosis of Choreoathetosis, which is a type of Cerebral Palsy where there are too many unwanted movements. At the moment, we've been told worst case scenario is wheelchair and never walking - but that's worst case.

It's been a long year and we made it through. I'd like to thank everyone again one year on for their wishes and prayers and I would be utterly remiss not thanking all the professionals and specialists who have been working with us to ensure that Holly's little brain recovers as much functionality as it possibly can.