Baby Times

Emily's adult future with autism

noreply@blogger.com (Richard John) — Fri, 17 May 2013 09:25:00 +0000

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?

noreply@blogger.com (Richard John) — Tue, 07 May 2013 15:11:00 +0000

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

noreply@blogger.com (Richard John) — Thu, 02 May 2013 11:18:00 +0000

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

noreply@blogger.com (Richard John) — Mon, 22 Apr 2013 15:34:00 +0000

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

noreply@blogger.com (Richard John) — Fri, 19 Apr 2013 17:00:00 +0000

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

noreply@blogger.com (Richard John) — Tue, 09 Apr 2013 19:48:00 +0000

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

noreply@blogger.com (Richard John) — Fri, 05 Apr 2013 14:09:00 +0000

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

noreply@blogger.com (Richard John) — Tue, 02 Apr 2013 14:17:00 +0000

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

noreply@blogger.com (Richard John) — Wed, 27 Mar 2013 15:17:00 +0000

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

noreply@blogger.com (Richard John) — Sun, 03 Mar 2013 20:12:00 +0000

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.

DLA application

noreply@blogger.com (Richard John) — Fri, 01 Mar 2013 15:26:00 +0000

There's nothing more disheartening than filling out an application for Disability Living Allowance for a child. You really need to pour it on thick - without lying - and explain how helpless, and utterly incapable of living a normal constructive life your child actually is. All for a measly couple hundred quid a year.

The problem isn't having to write it down, the problem is seeing a condensed booklet of your child's disability and everything it means all in one place. Reading how they can't brush their teeth, or dress themselves, or cut their own food, or go to the toilet by themselves or even communicate using more than one word.

It really makes your heart sink seeing it all ... written down.

Still, I hope Em's case is strong enough to enable her to continue to receive the scraps from the government.

UPDATE: Sue found a website that publishes a guide to help fill in the DLA. Hopefully this will help us navigate the minefield.

Dancing with my mummy

noreply@blogger.com (Richard John) — Thu, 14 Feb 2013 15:02:00 +0000

Today is Emily's first school ball.

From 4.30 - 6p, her school is having a Valentine's Ball and students from Rainbows have to be chaperoned by parents. Sue's looking forward to a bit of a boogie with Em, who will most likely be doing the pogo, as she normally does.

The entry is a paltry £2 per ticket and that includes unlimited drink and a packet of crisps.

I keep wondering if the theme is Enchantment Under the Sea and if Marvin Berry and his band are playing. Probably not to both of those, but it's quite funny that our little 4 year old is going to the ball.

Holly's additional therapy

noreply@blogger.com (Richard John) — Tue, 12 Feb 2013 20:30:00 +0000

Sue started Holly's additional therapy today. After a bit of a harrowing start (getting lost, having Emily's nappy on not quite right resulting in "leakage"), so finally found the place and got on with the job at hand.

We were wondering initially whether Holly would benefit from additional therapy, but I think the session put our wonder to rest. Sue regaled me afterwards about what transpired through the session.

Thankfully, BUPA are giving us 6 sessions as part of our membership. After that, we're not sure what happens. The specialist said she'd try to shake the tree from her end to see if the PCT (Primary Care Trust) will help us out (even though our own doctors have said no, as we're already receiving treatment on the NHS - although this kind of treatment is really unavailable anywhere else).

The most gut wrenching thing was Sue telling me Holly might have Cerebral Palsy. I realise those two words separately loosely mean brain damage, and that we're living in cloud cuckoo land if we think she escaped dying with no lasting injuries. It's just when you say terms like "Cystic Fibrosis", "Multiple Sclerosis" or "Cerebral Palsy" it sounds so final. I guess it's the label and the society baggage that comes along with it.

The therapist was not eager to label Holly yet, but said signs points to this being the diagnosis. On a positive note she was really impressed with how bright and alert Holly was and some of her movement were also good.

Here's hoping. Here's hoping.

Can you grow out of autism?

noreply@blogger.com (Richard John) — Fri, 25 Jan 2013 16:35:00 +0000

There's a lot of stuff in the press lately about children being able to grow out of autism.

Reading these articles, I can't help but think these people they describe only have their toe dipped into the spectrum, and therefore it's easy enough for them to have a normal enough life with therapy and help to be considered normal.

Whenever I think of Emily grown up, it sends shivers down my spine. I really have no idea what to expect, and sometimes assume everything will be fine and normal, as these reports say. Other times, I imagine her in one of those homes that are always in the news for abuse and it just sends my head spinning.

I have to remain of the conviction that a) we're doing everything that is possible for Emily which will b) lead to her having the best life she can. If that life is straddling the line of normal, I'd see that as us winning the lottery, but I count the odds of that outcome just as high.

Holly's paediatric check up - therapy and the MMR jab

noreply@blogger.com (Richard John) — Tue, 22 Jan 2013 16:21:00 +0000

Went to the paediatrician today for Holly's 6 month check up and all seemed to be in order, which was nice.

The doctor was very impressed with Holly's progress, her ability to do peek-a-boo, her sensory awareness (turning when she heard a noise, etc.), and general progress.

We discussed the hot topics that Sue and I are thinking about right now - further private intense therapy and the MMR jab debate.

While the NHS won't sanction any more than 6 sessions of additional therapy (£70/hr if your curious), we did discuss that we're prepared to pay for it ourselves after the initial "freebies".

We were told that while intense therapy is good on paper, there's a question about how effective it actually would be. If Holly is going to eventually get to 95% normalcy anyway, the therapy may only serve to get her there quicker and then there's no telling how much quicker. It most likely wouldn't serve to provide any additional help.

Regarding the MMR jab, we were regaled with horror stories of the effects of measles (which just sounded ghastly). While the jab itself may not actually cause autism or other illnesses, it may trigger any dormant neuro problems that are not yet detected and allow them to manifest themselves.

Sue and I are quite confident that Holly is a lot less "Emily-like" (for lack of a better term... "austismy"?) than Emily was at this age. A lot more engaged, verbal and alert.

Again, with the benefit of hindsight, all those people telling us we were lucky having such a lovely placid baby in Emily didn't know how utterly wrong they actually were.

We're still really skittish about the MMR jab as it's still not 100% certain that we wouldn't be signing Holly up to a lifelong disability if we did go through with it.

More sleeps and convincing required.

Holly's movements

noreply@blogger.com (Richard John) — Mon, 14 Jan 2013 17:42:00 +0000

Random Holly shot.

Over the last couple of weeks or so, some of Holly's movements have become a bit more erratic. When sitting up, she's pushing back and her "spakky" eye (apparently called a "squint") is more pronounced than it has been for a while.

We're not sure if this is down to natural forces or a side-effect of her being weaned off her anti-seizure medication topiramate.

She seems to be going through a rough bout of teething again, and these actions could be a result of that, OR they could be some underlying physical issue that was masked by the meds.

She doesn't push back all the time, and it could be an effort to get out of a situation she doesn't want to be in (like sitting up? or having a really sore mouth?). It really is too soon to tell at this point.

We're just trying to collate some further information at this point before raising any alarm bells, but at the end of the day I don't want my one year old child dependent on ANY medication for any longer than is necessary.

We had such high hopes the medication had become redundant (she's due to come off them this week), it would knock the wind out of our sails a bit to discover the opposite is true.

2012 in Review

noreply@blogger.com (Richard John) — Thu, 03 Jan 2013 17:33:00 +0000

It's been quite the 366 days for our family this year. Utterly worthy of noting down for reference in years to come.

Q1 - Jan - March

This was our most tumultuous time. We had brought Holly home from the hospital days before 2012 began, and it was a year sold to us that would be unrivalled - Jubilees, Olympics - Britain would never have it so good.

Come February, we'd received the news we didn't want to receive, but really knew was coming - Emily got her Autism diagnosis. Close went the door with the small chance that it was really a learning difficulty, and we struggled to come to terms with our first born dealing with a life long condition.

Our little girl in ICU.

March saw Holly have a cardiac arrest and die for around 20 minutes. The vision of a blue, lifeless 10 week old child in my arms sputtering her last breath, mixed with blood is one I will never be able shake - as much as I try.

We spent a month in various hospitals - including a very tense week in ICU at Evelina Children's hospital at St. Thomas', near Westminster.

March also saw Emily turn 4, celebrating near Holly's hospital with all four grandparents in tow. Probably the first and only time this will ever happen. Speaks volumes of the "global community" these days.

Q2 - April - June

Emily as flower girl at Dave and
Amanda's wedding

Mere days out of the hospital and still on the rocky road to recovery, we all bundled over the sea to Northern Ireland for an Easter holiday - complete with local hospital and doctor details and medication for Holly.

As Holly's condition improved, the weather went in the other direction and we had quite a wet trip of it. A weather phenomenon that we're still experiencing in January 2013.

June found us in sunnier climes as we flew to Spain to celebrate the wedding of our friends Amanda and Dave. Not yet 6 months old and Holly is already a Euro-traveller! Emily was even flower girl for the happy couple.

Q3 - July - September

Sue and I celebrated our 40th birthdays during Q3 of 2012. Momentous occasions for both of us. In August, Sue took both the girls to Australia for three weeks to celebrate PROPERLY. Of course, the trips down and back were not without their peril, but they made it back and Holly added another 10,000 miles to her already impressive first year haul.

Emily in her new school outfit.

September also saw us move into our new house, complete with sizeable girl's bedroom. Holly, for the time being, would reside in Sue and my bedroom - mainly so we can keep an eye on her, but also so she doesn't wake Emily up at 5am.

Mid-September saw Emily start big girl school. We got her into the Rainbows Opportunity Base (that's fancy talk for "Autism special needs school") at Green Wrythe Primary School near St. Helier's Hospital.

Thankfully, as it's quite far away, we also managed to maintain the transport she had for Dragonflies, complete with the same escort - Claire!

Q4 - October - December

Sue's maternity leave ended during this quarter, and she went back to work three days a week. The other two were taken up almost exclusively with medical appointments for one or both of the kids.

Holly and Em had their Canadian grandparents come over and spend Christmas. Their first UK Christmas since 1974. They DID reckon a few things had changed since then - including the abundance of Christmas lights everywhere.

Dinner with Dads

noreply@blogger.com (Richard John) — Tue, 11 Dec 2012 22:30:00 +0000

Had a nice Christmas dinner tonight with dads of autistic children.

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.

Nappyless Saturday

noreply@blogger.com (Richard John) — Mon, 03 Dec 2012 09:43:00 +0000

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.

Holly's neuro-review

noreply@blogger.com (Richard John) — Thu, 29 Nov 2012 15:02:00 +0000

Random shot - Holly enjoying messy play.

Sue took Holly up to Evelina today to have her quarterly neuro-review with the top people there.

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.

Sue's first day of work

noreply@blogger.com (Richard John) — Wed, 21 Nov 2012 16:43:00 +0000

Sue went back to work today. Maternity leave Vol. 2 is now officially over.

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.

Reading up on Autism

noreply@blogger.com (Richard John) — Mon, 19 Nov 2012 14:09:00 +0000

When we're not dealing with it in a very intense one-on-one situation with Emily, Sue and I are reading up on , talking about or watching specials on TV about autism.

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.

Holly gone done be ill, like

noreply@blogger.com (Richard John) — Fri, 16 Nov 2012 23:52:00 +0000

She's been teething for ages and wearing all the hallmarks of that process like a trooper, but after last night it's occurred to Sue and I that Holly is actually ill.

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.

Bloody nose.

noreply@blogger.com (Richard John) — Sun, 04 Nov 2012 12:09:00 +0000

Sue needed Em to go to the toilet. I think that's what started it off this time. She'd done a bit of stuff in her nappy and we needed her to get cleaned up.

The grizzling, crying and incomprehensible gibberish didn't stop until we were done with the loo and washed hands were being dried.

To calm her down, I figured a treat was in order - an apple! I took one out of the fridge and proceeded to get Em to help me wash it. As we were washing it under the tap, I noticed it was covered in red. It was a freaky "The Shining" moment where I thought the taps were running red with blood.

Oh no. It was just Em's nose.

We quickly put the apple down, grabbed some tissues and proceeded to be serenaded by further crying, wailing and gibberish. After what seemed like eternity, two pieces of chocolate and change of scenery Em finally calmed down enough to be able to wipe most of the blood from her hands and face.

We did talk to the doctors about this previously and they think her membranes in her nose are just too thin which causes this. I would like to get this sorted, as it seems any amount of undo stress on her - whether real or imagined - ends up with a bloody nose as a result.

Fireworks night... an almost success

noreply@blogger.com (Richard John) — Sat, 03 Nov 2012 23:30:00 +0000

Today was full of activity .. for Sue, Em and I.

First we went to the Aussie Rules Football match at the Oval (a place that is hands down the worst signposted sport ground I've ever been to).

That went off without a hitch mostly ... Emily only freaked out on the train into town twice and that was tunnel related. We took her ear defenders with us, in case the game or fans were too loud and she was happy as anything to have them on. She looked quite good walking through the underground tunnels with them on.

With the afternoon's success under our belt, we felt reserved optimism that the fireworks night wouldn't be another complete washout; thinking that Emily's only "fear" was the horrific noise the fireworks make and that they would be countered by the ear defenders.

Our first indication that smooth sailing was NOT ahead came on the walk to our chosen fireworks site - Carshalton Park. There were some individuals starting their festivities early and Emily could hear them quite easily, even through the defenders and was not amused.

At this point, Sue and I knew we were in for a crappy evening.

For the first few minutes of the fireworks, Emily refused to take her hands off her eyes, which obviously pushed back the ear defenders from her ears, completely negating any positive effects. We had a rug with us, and I figured system shutdown was imminent ... again, so let her lay on the rug. We put an afghan over her to keep her warm and she used the holes in that to peek out at the fireworks.

The tide had turned.

At times, she was even bold enough to completely uncover one eye to look at the fireworks. I told her how they were "sparkly" and she said it back to me.

After the fireworks, it was time to light the bonfire. I took Em over to the fence to look down into the pit where the massive fire was. As it was lit, I could see on Em's face how transfixed she was. The thought "pyro in the making" did cross my mind, but who knows what she was thinking. The flames were dancing and cut a very bright figure against the dark sky and she could have been taking any aspect of it in - most possibly that for something so bright it was nowhere near as loud as the fireworks.

We eventually retired back home and had some dinner, before Emily fell asleep in a pile on the kitchen chair.

While the evening wasn't a COMPLETE success, the fact that Em left the fireworks awake was a major milestone!