Incredibly hard times for Holly

As I type this, we've well and truly entered week 2 of Holly being in hospital.

Holly shortly after being admitted to ICU.

We've reached a few milestones in that time, but the hard fact is - she's still in hospital.

Sue and I have managed to keep people updated on Facebook with daily updates, which has been a Godsend. In the "olden days", we would have had to maintain a list of people to contact and ring round to give them all an update. Now we post on Facebook and watch the "likes" and replies come in, so we can get back to the very necessary job of worrying.

For the uninitiated, and to make a reference in this blog, here are the facts from the last 10 days.

On Saturday 3 March, we were shopping in B&Q and Holly was feeling a bit aggravated. She was in the Bush Baby carrier and Sue was attempting to feed her as we walked around the lighting section. After a few minutes, Holly went quiet so we thought she'd fallen asleep after having a quick drink.

When we got to the car a few minutes later, she was blue and lifeless and her eyes were open, rolling back into her head. I sat in the back with her and called 999, while Sue drove like a woman who's child was about to die, all the way to the local hospital... about 10 minutes away.

On the way, Holly eventually did die in my arms.

Once we got to the hospital it was a mad rush for the resuscitation  unit to bring her back to life, which they eventually did. It was touch and go how well she was going to be, but they were eventually able to give us some optimistic news.

The retrieval team from St. Thomas' hospital in Lambeth eventually arrived and whisked Sue, Holly and myself to the PICU ward at Evelina Children's Hospital.

Over the next few days, tests were run to determine if she was ill on that Saturday; drugs were given to help her and her temperature was kept low to keep brain function to a minimum and give it time to recover.

She's been having intermittent seizures which are to be expected given the "insult" (their words) her brain has been dealt and we just have to wait to see what kind of brain damage she'll be left with.

Certain milestones have been reached which we've been told we can view as positive. She had her ventilator removed on Thursday, and she was discharged from ICU on Friday. She's now in the neuro ward in the hospital where the care is not 1 to 1, 24 hours a day, but they are better suited to dealing with children with neurological issues.

This week is going to be a very difficult week as the doctors and nurses play around with drug levels to try and find out which ones and which levels work best for Holly.

All this time, Sue and I have to endure the unknown - will she cry, will she coo, will she focus on us or objects, how much brain damage is there, what is temporary and what is permanent. It's all a guessing game and it's made all that much harder as the only one who can tell us any answers is Holly, and she's going to take time.

Sue and I both feel that our lives are in limbo at the moment and they are. We've received the most incredible support from almost everyone we know. Our friend Mo has given us a bolthole to stay at while we go through this; our other friends have dropped in to see us and Holly and provided us with food and drink to offset the crazy prices at the hospital. The well wishes from people on the internet and stories of other children with epilepsy or similar situations has given us hope that we can help Holly overcome this.

I feel like the entire Internet is rooting for us, which is a bit selfish I guess, as I saw 19 other beds in ICU that needed the love and support we were receiving as well.

We've received one miracle - having our baby come back to life. We're just hoping that lightening can strike twice and Holly recovers from this as much as is possible.

Thank you again to everyone who's got in touch, it's kept us going.

Coo Coo ca Choo

I realise I write primarily about Emily and that Holly will most likely come to resent me in later years for this. However, Em was the first and an ongoing blog was interesting (and I had time - which seems to be less the case now with two). Also, now that Em is "special", I hope that some of what I write about will help other families in similar situations.

Now that's out of the way - Holly's started cooing and she's becoming really alert. Whenever she sees me, she smiles and I can spend minutes mouthing hello to hear her coo it back, making similar mouth movements.

When you have your second child, you tend to forget the joys of milestones, but this is a really nice one. I'm glad that Holly is becoming more attentive and focused.

In other news, we recently got Holly weighed and heighted. She's on the 91st percentile for height, so it looks like we've got a couple of Amazonian sisters in the family. Be interesting to see if this peters out or if they both end up towering over Sue and I.

Autistic dinner conversation

Went out for dinner last night with friends and the subject turned to children. Having some around the table deal with special needs children as their job, the conversation was soon high-jacked by discussions about Emily and how she's doing, what we could do better for her, what help is out there we need to get, etc.

It was quite a lively, informative chat and Sue and I took a lot away from it. I did feel continually guilty that we basically took over the conversation with talk about our special needs child, but I think the others we happy to have the discussion and to offer their help.

I guess if you have NeuroNormal children, it can get a bit boring as there's nothing untoward to discuss, no help  above and beyond that you need. Just talk about dance recitals and report cards. I guess.

Lost a tooth

Well this was a bit odd.

Emily lost a tooth tonight, a few years before she should have, according to websites.

She'd been complaining for a while whenever she bit into an apple, but we just put it down to mouth ulcer or similar.

Sue thought her tooth was loose earlier today and on her recent trip back from her bookshelf, she was missing a tooth and had quite a bloody mouth.

Not really sure what's going on as Em doesn't eat that much sweet stuff (barring apples and pears). Conjecture includes genetically "interesting" teeth, or perhaps some hidden trauma to that particular tooth that was missed (someone knocking it perhaps).

Whatever the case, we're just hoping that Em's gappy smile won't last long.

Behaviour workshop

Had our second ASD workshop at Emily's school today.

It was quite informative, and we had chocolate hob nobs with our tea, so that was a bonus.

We discussed behaviour and rewards and the usual things you'd talk about regarding any child.

With someone like Emily though, the key seems to be visuals. As she has delayed speech and sometimes can't fathom what we're talking about, it's good to find a common point - usually an image or photo - to get either her or our point across.

We also need to ensure that we get to the bottom of any behavioural issues. If she doesn't want to eat breakfast, instead of yelling and throwing the bowl across the room (something we'd never do), we have to empathise with Emily and try to get into her head. Why doesn't she want to eat now? What is a higher priority?

Sometimes, a PECS-powered schedule can come in handy, so Emily doesn't have to think that eating will last forever. We can show her - eat, wash hands/face, read book (i.e. reward).

It's a hard slog and sometimes it dawns on me how much work Sue and I actually have ahead of us.

My mental freakout

Sue and I have been quite good at keeping it together with regards to Emily and her disorder.

When Em was diagnosed, it was badly kept secret, so it didn't phase us ALL that much. However, sometimes I let my guard down and give my imagination free reign to think what it likes. This is dangerous.

The first rule of ASD is that no two people are the same, thus comparing Em to people or characters is a childish folly. That, however, doesn't stop the imagination from doing so.

I got to a point in my mind where Emily was an ageing spinster, without a family as she unable to hold a relationship, living hand to mouth and not able to hold down a job. It was a dark place that I didn't want to find myself in, as it was an amalgam of situations I'd gleamed from literature, conversations and pop culture as opposed to extrapolating on any reality that's actually based on Emily.

I'm confident that with Emily's attention to detail, her memory and her love of books we could have an amazingly successful little person on our hands as opposed to a "ward of the state".

Autism chat

Sue had gone onto the national autism website and arranged for a parent to parent call to talk to us about autism. I personally think this is a great idea, having parents in the same boat talking to each other, knowing we're not alone in the world.

We had great chat for about 90 minutes, and Sue and I both felt at the end that we were doing what we could for Emily; giving her the care we could and reaching out to those we could.

During the call, the usual pop culture references popped up again - Temple Grandin and Sheldon Cooper from Big Bang Theory. We also threw Abed from Community into the mix of people and characters with the disorder.

The call didn't solve anything, and it was never designed to, but Sue and I felt more at ease with the situation having been able to discuss it and I guess that's probably the point.

Another one of those days

99% of the time, Emily is a dream. Content, loving, happy. You couldn't ask for more.

The other 1%, she can be a real rat bag. Sometimes it's warranted, like when you tell her she can't have or do something.

Other times, maybe due to her ASD, you have no clue what set off the chain of events, but you know you can kiss sanity goodbye for a while.

This morning was the latter, unfortunately. It started with Emily coming into our bed just before 6am. She didn't get to sleep all that early, so I knew this was a recipe for an exhausted child.

Breakfast went well, until she turned to me and started crying. That was it really, for the rest of the morning. Changed nappy while crying; got dressed while crying; brushed hair while crying; even stood on the ledge to look for books WHILE crying.

Sometimes dealing with Emily in situations like this, I feel like we're speaking different languages. She's at the age when she can make verbal noises, but a lot of the time I have no idea what she's saying. After she melted down over whatever it was about Cheerios that suddenly turned against her, she was yelling at me what she probably thought was a reasonable explanation of what had happened. Might as well have been reading the phone book in Chinese for all could understand of it.

Em's introduced another selection of "what the hell" words to her vocab. Things like "waiter" (which used to be used in a different context), "hitter" (I think, and there's no clue on that one) and "bad" which is wonderful as she actually uses it in context when things are not to her liking.

One thing she did do this morning (which was new) was tell me to "shh" when I was suggesting books. She can only see the book spines in the bookcase and a lot of time has to pull the book out to see what it is. I thought I'd be helpful and read a couple of names out to see if she was interested. She turned her head to me, repeated "shhh" about 30 times and then scrunched my nose up with her fist in a very awkward fashion, which I took to be frustration on her behalf.

Days like this that test both parent and child's "awakeness" are not fun. I'm exhausted from the early morning call AND from dealing with Screamy McScreamerson. I'm sure Em is exhausted from the early morning and the frustration of not getting her point across.

Here's looking to a more peaceful Saturday morning.

Autism Spectrum Disorder coffee morning

We attended our first Autism Spectrum Disorder coffee morning at Dragonflies today.

Over the next six sessions, we'll be discussing various aspects of living with autistic children and some strategies we can employ.

Today's session was more of an introduction, including a quite handy "what is autism". There's three main factors that are used to determine the spectrum, with a fourth - sensory - coming into play more and more.

Having attended, I think Sue and I are more confident with how we can handle Emily's disorder. It was good to hear other parents concerns like "is she being bad, or is it just her"? things that Sue and I keep asking.

I know normal kids push boundaries to see how far they can go, but I really have no idea with ASD kids.

One thing we took away from this morning was an interesting stat - 1 in 100 "normals" are so focused that they could be considered experts on a subject - whether it's jam jar labels or quantum physics. For people on the autism spectrum, that number is closer to 1 in 10. Emily's gone from having a 1% to 10% chance of being brilliant with a certain subject.

At the moment, that would be recitation of Dr Seuss and Hairy Maclary books, but feeding on this, it could bode well having an innate attention to detail, a good memory and a love of books... as they could be text books.

We also discussed the iceberg effect - where the displayed actions of a child aren't always cut and dry and there's usually quite a bit more under the surface to explain why they're doing what they're doing - be it a tantrum, staring into space, or anxiety about being in a new situation.

We mentioned Emily's compulsion to uncross peoples legs and the leaders of the group were quite mystified as to what the motive of this action could be.

Looking forward to attending the next few sessions.

Occupational therapist's hints and tips for Emily

Sue had a call with Emily's occupational therapist on Friday and she was provided a lot of helpful tips.

The one I've really taken on board is deep tissue massage to calm her down. Seems that when she's over stimulated, Emily seeks pressure to help her deal with things. If I can give her a nice firm massage on her neck, arms, legs, feet or hands, it seems to bring her back in line.

I've been using this over the weekend on a number of occasions and it's worked a treat. Instead of letting her just get over her tantrum, I've been able to help prevent it from almost the onset by providing her with pressure.

The occupational therapist suggested giving her the massaging action every two hours (not possible during the week) and even perhaps putting Emily to sleep in a sleeping bag full of stuffed animals.

There were other points discussed, but this is the one I've really gone to town on.

It really is going to be an uphill battle with Em and a real attitude and life change for Sue and I. We can't be part time carers or part time Autism-friendly parents for Emily. It's all or nothing. I do worry how this will effect Holly as she gets older, as our lives will have to be tipped to making things OK for Emily. Hopefully she'll understand and not resent Emily. Hopefully she won't be in the same boat as Emily.

Sometimes, being a parent really sucks.