Tuesday, 11 December 2012
I was told years ago that you make your second set of friends via or through your kids. I think back to my childhood and some of my parents' good friendships stemmed from the parents of kids of my or my sisters' age.
Of course, I never thought in a million years, it would be friendships based on the common thread of disability.
We had a lovely curry as we got to know each other and our children a little better. It was an even peppered with poppadoms and tales of sleep issues, food issues, benefits we could get and where to spend our respite allowance.
It was a nice evening and even though our children were tucked up in bed, they were in our thoughts and conversation the entire evening.
Oh, and the curry was very VERY nice.
Monday, 3 December 2012
Woke up Saturday to the confusing site of Emily with trousers on but no nappy.
Sue and I surmised that she must have removed trousers and nappy and reapplied trousers.
Either way, we took it as a sign that Saturday should be nappyless experiment day.
I have to say that apart from a small leak, the day went really well. Sue and I were paranoid parents and popping Emily on the loo more than we probably should have, but we were happily surprised with the day's events.
Thursday, 29 November 2012
|Random shot - Holly enjoying messy play.|
She said the meeting was quite positive and Dr. Lim was happy to see the progress Holly was making.
He broached the subject of doing an MRI again to ascertain the actual extent of brain damage Holly will have. Just to be clear as well, there IS brain damage, the question at this point is how much.
The MRI done just after Holly's accident back in March was too close to the actual event to provide any lasting effects, and we always knew we'd have to do a follow up (or two) to figure out how bad (or good) things are.
Sometimes I con myself into believing there's nothing actually wrong with Holly and that Emily is the only child with "issues". Talk of MRIs to determine brain damage and the fact that Holly still can't sit up by herself at 11 months brings it all home in horrible technicolour.
I guess while others are wishing for their two front teeth for Christmas, we're wishing for a very limited amount of brain damage for Holly.
Wednesday, 21 November 2012
Consequently, Holly became a full time (well 3 days a week) member of the Busy Bees nursery collective.
Unfortunately for her, her first day is marred by a stinking baby-cold. Runny nose, the odd phlegmy cough and a LOT of mucus (she's also teething).
I've also taken her therapy chair, therapy table, prescription milk and baby Gaviscon round there as well.
Emily, of course, remains unaffected.
Monday, 19 November 2012
It's not taken over our lives, but we're very keenly aware how above and beyond we need to go for Emily.
Having said that, I've been reading with keen interest how they're dealing with Autism in the Halton region of Ontario. This is an area west of Toronto that encompasses Oakville and Burlington. Oakville, being one of the richer cities in all of Canada.
Their local newspaper ran a 4 part special on Autism - touching on various aspects of the disorder - diet, financial hardships, how much more parents are required to do, etc.
Having read a couple of the articles, I'm exhausted by reading how exhausted the various parents interviewed are. Nothing in the articles paints a very rosy picture of the disorder, apart from that moment when a breakthrough occurs - which is just magical.
It's good to know you're not alone in being the parent of an ASD child, but I would give anything to not be part of the club.
Friday, 16 November 2012
She's been dribbling and having "pink cheek" like any teething baby, even a touch of warmth on her forehead. Last night though, she was restless, really really warm and kept hocking up all we gave her, usually accompanied by coughing fits.
Sue took her to the doctor today and she's actually got a chest infection. In the grand scheme of what we've endured this year, this is really nothing in comparison, but to see the usually happy joyful little Holly reduced to an exhausted listless mess is not nice.
I guess this is all in anticipation of all the wonderful bugs she'll pick up when she starts nursery properly from next week.
Sunday, 4 November 2012
Saturday, 3 November 2012
Thursday, 25 October 2012
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.
Wednesday, 24 October 2012
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.
Wednesday, 26 September 2012
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.
Tuesday, 25 September 2012
|Holly. Things are going well.|
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.
|Nappies. Good riddance finally?|
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.
Wednesday, 12 September 2012
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.
Friday, 31 August 2012
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.
Tuesday, 24 July 2012
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"
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?
The Gruffalo 24 Piece Floor Puzzle (Google Affiliate Ad)
Wednesday, 18 July 2012
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!
Tuesday, 17 July 2012
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.
Monday, 9 July 2012
Case in point, as I write this on the eve of my 40th birthday, I'm in Las Vegas on a work trip. Conventional wisdom states I should be having fun!, fun!, fun! and making the most of my time here. What do I actually want to do? Crawl up in a ball and wait until the flight home.
I went for a walk today in the searing 42C heat, up and down the strip, popping into shops and casinos along the way and all I could feel was the utter sadness and desperation of the people gambling away money they could ill afford to lose... that and an amazing thirst.
I guess a place like this isn't for everyone. Being here has helped me realise that. There's also no definition of fun that suits everyone. You don't have to get legless by the pool or lose your shirt on blackjack to tick the "having fun" box.
Friday, 6 July 2012
Now that the warmer weather is here, she seems to take every opportunity to take off her socks (which is fine) and evidently her nappy. This is usually not cause for concern, as we catch her before anything untoward occurs or she's out in the garden where we don't care if anything untoward occurs.
Today, however, she decided halfway through a poo that enough was enough and she needed her cheeks to be kissed by mother nature. I only discovered things when I smelt the sewage like cologne that accompanied Emily's turd stained feet, legs and hands... and very quickly our lovely dining room chair.
A quick trip to the prison hose down room (the shower) and all was resolved, Emily-wise. The dining area still stinks like someone with gastric flu came to visit for dinner, however.
Not to be outdone, I've just had to glue Emily's nappy back on her, as I chanced a glance out the window and saw her happily bouncing bottomless on the trampoline.
If only she equated hatred of the nappy with potty training, there'd be no issue. It's just when he decides the whole world is her potty that it's a problem. A very crappy problem.
Thursday, 5 July 2012
It's called Rainbows and is attached to Green Wrythe Primary School, up near St. Helier's Hospital.
We had a quick look around the classroom she'll be in. As the school's theme is colours of the rainbow, the reception class is "red" - this year as there's two classes, one will be Fox and the other will be Squirrel.
We also talked about various other aspects, filled in an admission slip and got a quick look at the school uniform's jumper, which is (no surprises) green.
Both Sue and I felt that this new school was a good extension of what she's had at Dragonflies to date - low distractions, small classrooms (she's actually going to a 6-pupil class from an 8-pupil one) and a decent ratio of 2 students per adult.
We still have to sort out the transport as well as finalising Emily's statement of need, but those are minor issues.
Looks like come 12 September, we're going to have either a "Red Fox" or a "Red Squirrel" in our midst.
Sunday, 1 July 2012
Gunning for Spain, I couldn't contain myself when they scored their first goal.
Emily was in the bath, with Sue washing her at the time. When the goal happened, and I cheered and whooped and the TV sound was cheering and whooping as well, Emily lept up in the bath, cheering and whooping, and tried to jump out of the tub to come celebrate. It took everything Sue had to constraint the little celebrant.
Once she was out of the tub and dry, she feverishly watched the rest of the match with me, jumping up and down and hollering "hurray!" every time someone scored or ALMOST scored a goal. Thankfully Spain scored three more, so there was ample chances for actual celebrations.
Just wondering how this would translate to Emily going to an actual event. I imagine the sound in a live stadium would do her head in. Also, with football notoriously low scoring, I don't think this would be the best sport to get her whooping a hollering. I think we'll leave it to televised sports at the moment.
Monday, 25 June 2012
She's much brighter, more alert, smiles more and follows you around the room. It's all the things we could have hoped for, for a child verging on six months old (tomorrow).
She still has her spasms, especially in her leg (for which I've nicknamed her "Mississippi Leg Hound" purely for the crazy leg movements, not for the rest of the Christmas Vacation reference).
She's rolling on to her stomach unaided, which is good. Usually this is followed by a little "help me" cry as she lies there unable to turn back over. Today, however, she was able to roll on to her stomach and then back on to her back, unaided.
We've also introduced new flavours and textures into her diet, to promote the next stage of eating. She's eating more paste-consistency food (thanks to our food processor) and Sue's cooked up some baby recipes with chicken in them, so Holly's getting her first taste of meat!
Emily's still ignoring Holly, but every now and then we notice her spying Holly out the corner of her eye. I think as Holly grows up and becomes a bit more predictable and less of a random crying machine, Emily will warm to her. She's only been around Holly for about six months now, which isn't all that long in the grand scheme of things (obviously it's a lifetime for Holly).
Monday, 18 June 2012
Emily has an ulcer in her mouth, exasperated by the fact that she keeps touching it. This wouldn't be so bad if she washed her hands or didn't stick her hands down her nappy. God alone knows the level of infection her ulcer has.
She was sent home from school late last week as she'd made herself throw up. We realised quite quickly, this was because she had rammed her whole fist in her mouth, in a sensory attempt to sort out the ulcer problem.
Over the weekend, however, the problem really came to a head. You just can't tell a child like Emily NOT to eat on one side of her mouth. She was fine for a couple of random mouthfuls of random food, but then it would hit the ulcer and all hell would break loose. It was quite problematic, because Emily would then view the remainder of the food on the plate as the item which caused her immense pain.
We tried everything - from wet sloppy stuff like soup, to things like raisins and the like. It turned out that just about ANYTHING that went into her mouth caused her pain.
Thankfully when she came home today from school, as we furtively gave her something to eat, she gobbled it up completely and utterly. She's now making up for lost time and her dental-issue enforced fasting of the last few days.
Friday, 15 June 2012
To help with what is essentially infant heartburn, she has now been prescribed Infant Gaviscon. Sue and I are over the moon that we have to administer yet another medication.
Like her Topiramate, it's not just a case of open, measure out and administer. It's all sorts of fiddly - first having to make a paste, then adding water, then watching Holly dribble it out as it tastes revolting. Then having to add flavour (i.e. jarred fruit) to mask the taste.
Hopefully this additional medication will help Holly feel relief from whatever pain the reflux is causing her.
Emily had decided to really jump into the spirit of being on holiday and refused to go to sleep most nights before midnight. This did make make for some peaceful-ish mornings. Trouble is Holly still went to sleep at her regular time and provided the usual dawn wake up calls. A couple of mornings we got off lightly and it was about 8am.
Emily was flower girl at our friends' wedding. She did a commendable job, given her difficulties. I ended up walking down the aisle with her and we had reached our seat before I remembered that we should be chucking rose petals along the way. Oops.
During the ceremony, Emily proceeded to recite her favourite line from Peppa Pig, "FIRE!". Thankfully she was drowned out by vows and celebrants, but she does pick her moments!
Most days we spent swimming in the pool. Emily's vernacular sees "swimming" as taking a bath, so essentially taking a bath in a massive unheated bathtub (pool) was quite something. She fretted about going in every single time - a few choice games and help from friends ensured that she ended up having a wonderful time in the pool.
The biggest surprise was food. Em CAN be a picky eater sometimes. If things are out of the ordinary - i.e. carrots cut oddly, Capri sun served in a cup not the foil container, etc. - she will refuse to eat or drink. Also sandwiches turn into two pieces of bread and filling, eaten separately.
Saying that, we ordered her seafood paella one night, assuming I'd have to consume two portions and have her starve. Sue and I were pleasantly surprised to find her hoover down the portion (within reason - she didn't fiddle around with the clams or mussels, but did eat the squid). From that point on, almost every meal we ate out included a child's portion of seafood paella. Can't say fairer than that.
Holly got her usual jar of puréed fruit, which she inhaled. Not sure if the Spanish jars of fruit taste any different. Most of the fruit we get in the supermarket this time of year is from Spain, so my money is on "no, it doesn't taste any different".
Friday, 1 June 2012
One of the many doctors that is seeing Holly wanted to test her to see if she actually needs to continue her medication. Sue has just returned from the appointment to let me know that via the power of ultrasound, yes, Holly has silent reflux.
One of the web pages with info on it lists a load of various symptoms, some Holly has, some she doesn't. Things like low weight gain, arching back during feed, etc. ring true. Thankfully things like blood in the stool have skipped this particular baby.
According to the web site as well, the underdeveloped oesophagus can develop itself in the first year or so of life, but if she's anything like her father or his cousin Ben, she may not be out of the woods yet.
Along with everything else to do with Holly's current condition, time will tell.
Wednesday, 30 May 2012
There's so much about that sentence that fills me with dread.
Thankfully, through various workshops and meetings, we've discovered (and had reinforced) that the prepared parent of an ASD child can (hopefully) circumvent most meltdowns and problems by being prepared.
To this end, Sue bought Emily a book about a flower girl a couple of weeks ago that we've been reading. How much she can equate some badly drawn artwork to a task she's never performed is yet to be seen.
To enable to trip to be less stressful for Em, Sue's also put together a small book outlining what we're doing, where we're going and - crucially for ASD kids - that we're coming back home again.
The goal is to read this book like we would a Dr Seuss or Hairy McLairy book, and hopefully the repetition and the familiar photos will make the actual event of the flight to Spain, the wedding (and flower girling) and the trip home almost stress-free.
One thing we have been remiss about is to get Emily in the habit of wearing headphones. This won't be much of an issue going to Spain as EasyJet won't have any in-flight entertainment. It will be quite imperative to have this sorted on the flight to Oz for the girls in August, as Em will need to be entertained by the TV screen.
Fingers crossed the Spanish holiday goes off without a hitch.
Monday, 21 May 2012
|Austin Powers and his juice.|
The latest in her canon happens when she's upset. Tonight, she was frustrated about having some juice, so came over to me, ripped my hand away from Holly's head (where it was holding her up while I fed her) and proceeded to tell me "Yeah, baby!" in an utterly frenzied, upset manner.
While the intended message, somewhere between "I'm frustrated" and "just gimme the damn juice" was obviously conveyed by Emily, I had to hold back a snicker at her completely misusing such a random term to convey these feelings. It's like tourettes, but instead of swearing she uses random Austin Powers sayings.
Monday, 7 May 2012
Thursday, 3 May 2012
Last week was a bit of a toe dipping exercise, touching on a lot that Sue and I have discovered through Dragonflies sessions and the like.
Tonight we jumped straight in to Communication. It was quite an interesting session and we even have home work!
It made me think about Emily's condition in a slightly different light - as if she's a visitor from another country and can't speak the language. She picks up words and phrases here and there but really has no idea what they mean in context. Kinda reminds me of the Monty Python sketch with the phony foreign dictionaries.
I'm sure "my hovercraft is full of eels" might actually mean something to Emily, but it means Bo Diddly to me.
We also talked about the iceberg method again and discussed that the behaviours you see are only the tip of the iceberg, compared to the symptoms down below.
We're to look at Emily with different eyes over the next week - iceberg-wise as well as dissect her verbal and non-verbal communication.
It's really dawned on Sue and I that as parents of an Autistic child, we're shirking our responsibilities somewhat - this is a full. time. job!
Monday, 23 April 2012
We went to view one today called Forresters. They apparently focus on more integration than the alternative - Green Wrythe.
The tour was quite eye opening, and we saw the various classrooms - mainstream and base (what they call the special needs children) - as well as the gym, the music room, the base sensory room, the computer room. The only room we didn't get a tour of was the library... which is ironic really.
Sue and I are still confused as to the best steps for Emily going forward. Forresters is better for verbal communicative children, while Green Wrythe is better for kids who are still developmentally stuck - like Emily. However, Sue and I want Emily to come out of her shell and does mild integration provide that better than being with other children who don't talk?
We still need to see Green Wrythe before we make up our minds, and if we DO get a statement and accepted to either of the schools, they can decide whether they accept Emily based on the data they receive as well.
Friday, 20 April 2012
We're hoping to get a statement for her, thus getting her into specialist classroom at one of two schools in the borough.
However, as a statement isn't guaranteed, we also had to go through the proper "nothing wrong with your child" channels. We have a good school a stone's throw around the corner from us - Stanley Park Infant - which was not only our first choice, but also the school Em got into.
It made both Sue and I quite sad to have to reflect on her special needs and the fact that she won't get the integration with normal children that a normal child would get.
Being around Emily, we tend to forget how behind she is, and things like this just really ram reality down our throats.
Still, she's getting all the help she can, Sue and I are doing what we can, and if she gets a statement, she'll be all the better off for it.
We've been given lemons, so better made lemonade than complain we don't like citrus fruit. (I may have to work on that one).
Thursday, 19 April 2012
Someone who gets paid to know what they're talking about suggested that we might want to clear with this professional to ensure that Holly won't become autistic, or at least review the likelihood.
We have since been told that the correlation between autism and genetics (or hereditary genetics anyway) is about as sound as not being to conceive while breastfeeding - i.e. complete hokum. Although, I'd like to explore further the theory that more scientists and uni profs (the "smart people"), etc. have autistic kids than the general population.
Still, the appointment was made, so it's probably worthwhile to see at least what the geneticist has to say on any matter regarding Emily. I'm just quite sure whatever is discussed it won't be about autism... or at least we'll be told that Emily is autistic because Sue and I are really smart.
Monday, 2 April 2012
|Holly as she is now. At home.|
It's been quite the trying month, starting with Holly's cardiac arrest on the 3rd of March and culminating in her being well enough to be discharged today, albeit with a bevy of drugs and a physio plan.
It's going to take some adjusting to not having the hospital around us. For Sue, Holly and myself it will be that safety net the NHS provides, with doctors and nurses only a raised voice away. For Emily, it will be having her family back in one place - mummy and daddy in the same building, sleeping in the same bed and "the baby" back to disrupt her rule of the roost.
In the last few hours, Emily hasn't been as ambivalent towards Holly as she normally has. We've even got her to give Holly a kiss which she has willingly done. I don't believe this is the start of any great thawing of diplomatic relations yet, but it might at least be a small amount of acceptance on Emily's behalf.
Now with Holly back and the family unit together again, we're about to attempt our next great hurdle - taking Holly on an airplane. We've got a week booked in Northern Ireland. The doctors and nurses see no reason Holly CAN'T go and we have an introductory letter for any hospital or doctor we need to contact outlining the story so far.
Now that Holly has spend 1/3 of her life in a hospital (including her initial birth stint) we're hoping not to have to see the inside of one for a long, long time.
Friday, 23 March 2012
Sue came last night for the first time since Holly's incident on the 3rd of March. We had scheduled ourselves to go to an information session for an EarlyBird course put on by the National Autistic Society that we want to attend.
For 90 minutes we were able to forget our woes regarding Holly, and remember our woes regarding Emily.
The course is going to encompass 12 weeks, including 8 group sessions and 4 home visits.
From everything we saw last night, we can't get onto the course soon enough.
Monday, 12 March 2012
|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.
Sunday, 26 February 2012
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.
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.
Saturday, 25 February 2012
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.
Thursday, 9 February 2012
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.
Tuesday, 7 February 2012
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".
Saturday, 4 February 2012
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.
Friday, 3 February 2012
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.
Thursday, 2 February 2012
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.
Sunday, 29 January 2012
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.
Wednesday, 25 January 2012
She's not eating at the table properly and dinner / breakfast time has become a bit of a mental warzone.
This morning, however, was one of those times you could have just brained her. Just before 2am she came bounding into our bedroom all smiles and laughter, ready to play, etc. 2 AM!
I eventually took her into the spare bedroom where she EVENTUALLY got to sleep... around 5am. You can imagine the joy waking her up today.
We thought about it after the fact, and it's been a real shake up for her. She won't go to bed in her own bed either. We've had to let her fall asleep at the foot of our bed, like the family dog. I imagine she must have turned in her sleep last night and woke slightly to find she wasn't where she started the night and just wanted to return.
I don't know what the solution is. Discipline and punishment and all the stuff you do to a normal child go out the window with someone like Emily - they just won't respond to it. We have to instead try to get to the root cause of whatever the situation is and try and nip that in the bud. It's difficult, though at 2am when the root cause sailed some 5 hours ago.
Everyone keeps saying that Em will stop reacting to Holly and start dealing with being a big sister, but having read the SEYSCAT report yesterday and knowing that Emily isn't like other children (who eventually come around), I'm not betting that's going to happen all that soon.
Until then we put up with horror meal times, screams when we go near her bedroom door for sleeps and the general tantrums of a child who can't express that she doesn't want to share mummy and daddy any more.
Tuesday, 24 January 2012
This report is compiled by a number of professionals - paediatrician, occupational therapist, music therapist, Emily's teachers, etc. - as well as from comments from Sue and I.
Woven together into a 9 page document it played out rather damningly. As much as Sue and I want to put our head in the sand and believe that Emily's only brushing the end of the spectrum and she's 99% OK, this report brought us straight back into reality.
I won't go through everything it said as it makes for some sad reading, but it picked up on her fine and gross motor skills being underdeveloped; her language being well behind - which is no secret. It even mentioned the way she walked down the stairs - preferring both feet on one step and then putting one forward - as being immature. I didn't even notice it until this evening. BTW, walking upstairs was fine.
The report did end saying she's happy, bright, and all the other positives that you can pretend even start to balance out the negatives. There were also some strategies that Sue and I have to continue to take on board - MORE inset puzzles, for instance.
It's not going to be an easy ride and every time we think we can cope, we keep getting knocked down another peg on the Parents Who Can Deal With Their Child's Disorder (PWCDWTCD) chart. Hopefully the bad news will stop coming and we can turn this situation around.
As Sue said, she's only three, so all hope is NOT lost, but it will take a lot of effort from us. It will also possibly take a major change in lifestyle and the way we do things to accommodate Emily's condition. If it results in future results being more positive, it can only be worth it.
Monday, 23 January 2012
Given her recent prognosis and the fact that she DOES drive us mental with her meltdown and seemingly erratic behaviour sometimes, I really need to count to 10 and not lose my rag with her more than I do.
However, with her reaction to breakfast this morning and subsequent meltdown, I don't think I could have chosen a more difficult resolution... but resolute I stayed.
Arghhh.... we'll see which one lasts longest - the gym or Emily.
Wednesday, 18 January 2012
We were told what we'd assumed for ages - that Emily is on the autism spectrum.
However, like all things, there is hope and light at the end of the tunnel. It just might be a different tunnel from the rest of us. We discussed continued learning, whether she'd be able to function as a normal member of society, get an education, etc.
The immediate strategy for Sue and I is to continue Emily's communication, but as we discussed, it really needs to be on her terms. She will talk - and we were told 50/50 that kids in Emily's situation (or worse) talk before they're five - but talking is a part of communication.
Emily already lets us know certain things - she'll bring us a plate or a cup; she'll grab your hand and lead you to the bookshelf; she'll sit on the kitchen floor when she needs to go potty; she'll make your finger point to the phone screen or tablet screen when she wants to see something (invariably a Hairy Maclary video).
I'm not too concerned about Emily getting her point across, it's just that society dictates people get their point across in a conformist manner. Emily can't go into a Cafe Nero when she's 16 and grab the cashier's finger and point at the board for what she wants.
The outcome today was that, with our continued support, there's no reason Emily can't have a fulfilling life and become the world expert in whatever she wants - she just won't probably be a "frontline" worker... so she won't be the Cafe Nero cashier... she might OWN Cafe Nero, though.
Tuesday, 17 January 2012
Today she unveiled the latest addition to her vocabulary - "upside down". Of course, this being a small child the words actually sound like "up is down". I thought at first that she was espousing some existential philosophy until I noticed that the book she was looking at was indeed "upside down".
Previously, she'd look at a book upside down, right side up, left side right, whatever and not really care, as long as there were pictures to be seen and a story to be told to her. It's quite impressive that she's starting to make the distinction between what is correct and what is off kilter.
Sunday, 15 January 2012
The fun is when the toddler REALLY REALLY REALLY needs the forgotten nappies.
This happened yesterday when we went out for a nice relaxed four hour lunch (or as small children refer to it "a prison sentence").
Emily was thirsty and managed to neck back about 3 glasses of orange juice before settling down. This always bodes well the other end.
Anyway, we changed her once quite early one due to this intake. The next change was signalled by the upturned nose whenever her backside wandered by.
However, that's where the nappy supply ended. The demand, however, continued in some sort of horrible economics example gone awry.
I ended up having to scoop her "produce" out of the second nappy to give her more room for manufacturing. Of course, to teach daddy a lesson, Emily took this opportunity to have a nice warm wee all over my hands and the floor.
This being an adult restaurant, there were that many places conducive to changing a child's nappy. As it was, the delicate exercise of "remove, scoop out, and reattach" resulted in some of Emily's "produce" going places it wasn't intended - her knee, the back of her leg, etc.
She was cleaned up as best as possible, given the circumstances, but at this point she'd pretty much booked herself a bath at the very EARLIEST convenience.
Thankfully nappy-wise, as we'd brought far too many Holly-sized nappies, we were able to pad Emily's full stinky nappy with a new fresh Holly nappy until we got back to change her properly.
It's strange how the promise of a rather relaxed languid lunch can turn into a toilet fiasco of the highest order. The sooner we toilet train Emily, the better everyone (well, me) will be,
Monday, 2 January 2012
Holly on the other hand should be on Britain's Got Talent. Her backside is like a fire hydrant. A gentle tickle to clean it results in a spurting jet of yellowy-green poo squirting everywhere. Last night offering was double the pleasure, double the fun as she had a squirty wee at the same time. The amount of towels we have to change is a given, but the amount of flying wee-soaked jumpers I have to change is getting out of hand.
The midwife told us that the bum geyser was to be expected, so it shouldn't be too much of a shock. Why it is every time is still beyond me. I (and my jumpers) can't wait until this phase passes, really.