Monday, 9 December 2013


What some people would call taking a couple of steps, stumbling and falling over, we're considering a triumph.

Holly has begun to take independent steps, which can only mean proper "walking" is on it's way. By proper steps, I mean she puts one foot in front of the other without being aided to stand and then (if we're lucky) we get the second foot moving in a walking motion followed (if we're REALLY lucky) by a third footstep. Then, there's the invariable wobble and drop.

When I picked her up from nursery today they were so excited to tell me of this. Apparently Holly was quite self congratulatory as well (in that hiccup laugh that she does so well).

The downside of this (if there is one) is that she's getting quite impatient with people carrying her. She's squirms out of your arms (if you're not lucky) and wants to walk with you holding her arms.

She is hands down the most determined small child I have ever come across (and a number of her key workers have said the same thing).

Rather curious how the flight to Australia is going to pan out later this month.

Sunday, 17 November 2013

Second ABA workshop

On Saturday I went to the second of three workshops on ABA. This day covered "10 tactics and procedures for effective behaviour change".

The main one covered was DTT - Discrete Trial Training. A lot of people, when they hear ABA actually assume it's only DTT. However, as I discovered on Saturday DTT is only one of hundreds of tactics and procedures you can use with ABA. In fact, you need data and feedback from other tactics in order to do DTT correctly, which was interesting.

There were various glimmers of hope during the day as a few suggestions and tactics were actually things we did with Emily already. A couple of new ideas - including trying to get WH questions (who, what, where, when, why and how) into her repertoire - may prove a bit out of reach at this point.

It was a tiring day, compounded by a late night Friday evening, but well worth it. Just need to organise some ABA tutoring for Emily now.

Wednesday, 6 November 2013

ABA show on BBC Four gets me thinking of where we're at with Emily

Having started the slow road to researching ABA and VB, it was happenstance that there was a show on BBC Four the other night about ABA.

It seemed to really dig into the more unsavory aspects of the treatment and there was actually an American woman from a Uni in Sheffield that said ABA can strip away all the behaviours that make an autistic person unique. 

This person CANNOT have lived with an autistic person. While there's a lot about Emily I love, there are some of her behaviours that are just downright annoying. The hands on the ears, the spinning, singing, jumping around - these are fine. It's the incessant random noise generation and constant lack of attention that are annoying regardless of condition.

Sometimes, I do feel we are living in the dark ages, and watching this show really brought it home. Are we living through an epidemic that needs to fought tooth and nail, or are Autistic people the natural evolution of our species - one that we're ignorantly trying to repress and stay normal, according to our pre-evolved standards of what normality means. 

I'm constantly reminded of the scene in Star Trek IV where modern doctors are about the hack Chekov's head open to try and save him and Bones simply tells them to put away their butcher knifes and let him save them. I can't help but think that in years to come historians could potentially point to this point in the past as the tipping point where we tried to suppress something we don't understand. 

I'm still of the belief that we need to at least curtail the most outrageous behaviours in an attempt to bring a certain level of normalcy (or at least suppress Emily's lack of attention and focus) because whether we like it or not - we live in a society that has a certain level of normalcy that we need to adhere to - we can't just poop in the street or knife whoever we want. Likewise, a food fight in a fancy restaurant really isn't tolerated. 

Tuesday, 29 October 2013

Disease, affliction or evolution?

I was watching the trailer for the forthcoming X-Men film Days of Future Past and a strange notion hit me - as mutants in the Marvel universe are the evolutionary future of humanity, could autism be the evolutionary future of real life humanity?

It's of course a rather crack pot assumption on the surface. However, I started doing some research on Google and there's quite a few posts, articles and blogs about the subject. The usual suspects are trotted out as evidence that humanity has benefited from autism - whether it's evolutionary or a life long affliction. Names like Einstein, Newton, Gates, etc. - the ones who pushed human knowledge further than their counterparts and aided our evolution to where we are now.

Personally, I think the concept is a crock, but it does make for a good research session on the internet. There's a lot of stuff out there to at least make you consider it.

Have a look at this video before you go:

"We're the future, Charles, not them" - Magneto to Professor X in the original X-Men film.

Monday, 28 October 2013

Growing realisation of issues with Emily

Sue picked Em up from Helen's tonight utterly dismayed. Apparently Helen had to dry Emily's clothes in the dryer as they were wet from her weeing herself. The obvious question - how often did you take her to the toilet? - was met with a response akin to "I was too busy" (apparently she's got a full house with it being half term).

This incident just really hit home that Em isn't getting the right "experience" (if that's the right term) going to Helen's. She doesn't need an obviously over-stretched childminder neglecting her bladder needs resulting in a heavy nappy and wet clothes.

Sue and I are seriously having to rethink our strategy with regards to Emily. I don't really know if a childminder who specialises in special needs kids is available in our area. Given the issues with someone like Em, I can imagine if there was they'd have a very low child to childminder ratio, thus increasing the cost exponentially.

Emily is special needs - there's no getting around that - and we need to address this with increased special needs-related services for her. A one childminder fits all approach obviously isn't working and I really don't know what the solution is - logistically, personally, financially.

Even taking a full time position to look after Em wouldn't be the best solution as we aren't trained or equipped to facilitate her needs fully.

The mind continues to boggle.

Sunday, 27 October 2013

Verbal Behaviour course for Em.

I went along to the verbal behaviour seminar yesterday and while a lot of it was quite out of my grasp, it was a very interesting day.Although parents and grandparents and other relatives were free to take part, it REALLY was geared towards professionals.

The two things I really took away from this session were a) we really need to try VB and ABA with Emily and it's data and results driven (as opposed to whatEVER they're doing at school. The second thing I took away was I really HATE autism. I hate what it's done to Emily, I hate that we HAVE to have seminars like this to even start the journey to understand our kids, I hate what it's potentially going to limit her life to be like.

It makes me feel even worse with all the people posting on Facebook about how they love their child as they are and wouldn't change them. I have to say, if Em was neuro-normal, I can't imagine she'd be as energetic as she was. I'd take a slower child any day, if it meant she was neuro-normal.

I digress.

I didn't know anything about VB or ABA until I went to this class - and that was probably not a good thing, as a lot of stuff went over my head - not being a professional and all. What I did learn was the entire field is based on research by B.F. Skinner and, while his tome is quite difficult to read, the last 50 years or so have produced some good literature and some good protocols to combat autism.

I know I shouldn't get my hopes up, but I did come away from the day thinking that we might be able to reach Em a little more than we currently do. I guess that's what keeps you going in the end - hope.

Friday, 25 October 2013

Doctor's notes about Holly

Sue went to see Holly's paediatrician earlier this month, and we received the notes from that meeting in the post today. It still floors me that the letter was sent out to 11 different people/departments - all for one little girl!

As Holly is progressing and showing noticeable signs of improvement, we still think she's doing well. Reading through the notes, I realise that I may be deluding myself. There's a lot of development delay which isn't all that apparent to me, because the only yardstick I have to compare to is Autism. Also, seeing the phrase "Diagnosis: Cerebral Palsy" really makes it a lot more real.

Apparently various things that Holly is doing are at 15 month levels or 18 month levels. She's behind, but only by a few months (as she's only 22 months old tomorrow). This is really why this early intervention is key. I can only imagine how far she'd be behind if we DIDN'T have 11 departments/people working on our team.

The notes did point out that she's a happy little girl, which is very true (apart from when she's tired cranky or teething) and that good progress is being made.

Regardless of where she is on the months development scale, I'm still proud of my little girl and happy to have her here at all.

As I type this, she's happily sitting next to me playing peekaboo by herself and saying "oh dear" while I make dinner. I guess it's time I sign off and ask (to noone in particular) "Where's Holly?"

Until next time.

VB with ABA for Emily!

I'm off to an all day workshop tomorrow to find out more about VB (Verbal Behaviour) and ABA (Applied Behavioural Analysis). It's theories for therapy to aid with Autism run by ABA Tutor Finder.

There's three workshops and the first one is tomorrow from 10-4.30 in Holborn. I can imagine it's going to be pretty full on, but I hope I can get some practical takeaways to apply to Emily.

According to the website, "The course is suitable for both families and therapists wishing to further their understanding of ABA as an intervention for children on the autism spectrum and is an excellent opportunity to meet and network with fellow families and/or therapists."

Sue and I are both wracked with guilt that while Holly is the more pressing need ("the first two years are the more important") we're doing things for her at the expense of Emily. This is part of our effort to balance those scales.

Fingers crossed.

Charity for Holly

Sue brought Holly home from Busy Bees on Wednesday and let me know that they've nominated Holly as the recipient for their autumn fate fund raising event at the end of November.

I'm quite chuffed and also slightly embarrassed at having Holly singled out like this, but at the end of the day if the money raised can help her even a little, it's something I can get over.

The next step, from what Sue told me, is we need to piggyback on a proper charity who will receive the money and then allocate it in some way to Holly - either for hardware for her or further 1on1 support or even to pay some of the way for us to go to the Bobarth Centre in North London.

Really nice gesture at the end of the day.

Sunday, 20 October 2013

Emily continues to prove me wrong

A few weeks back, Sue was adamant we get a trail gator contraption, to hook her bike up to Emily's. While I was hopeful this wouldn't end on the scrapheap of aids for Emily like so much other good intentioned purchases did, I wasn't so sure.

Emily had shown no interest in her bike (as it's not a book) and the few times we had her on it were short lived to say the least. The outcome, as I could tell would be one of three scenarios - she'd stay on her bike and love it; she'd get bored and try to get off and end up grazing/bruising/hurting herself; she'd end up not enjoying it and let everybody know. I, personally, was expecting the second result as she's quite akin to leaving tasks she bores of without much thought for anything - let alone her well being.

Well, I'm glad to say she's proved me wrong. She stayed attached to Sue for the entire duration of our ride to the nearby park and back. She was happy to hop on the bike and be pulled around. I think most of the time was spent in her little world taking everything in, apart from the actual ride, but this is a really great stepping stone to doing more rides and getting her more accepting of it.

Saturday, 28 September 2013

Music Therapy for Em

We took Emily to music therapy today at Nordoff Robbins. The venue is a building next to the BRIT school in Croydon, which is kinda cool.

It was a half hour session with an Irish guy called Jimmy and he said afterwards that he could tell she was quite musical (nursery rhymes aside). When he changed key, she changed with him for instance. Apparently she also plinked away on the piano a little as well.

Afterwards, we were in Toys R Us and I felt like putting this to the test. I went over to the keyboards with Em and turned one on, playing a few notes. Em managed to plunk out a random tune as well. Not the Mozart I was hoping for, but she didn't shy away like she does when I approach her with my guitar in hand.

All in all, it seemed like a very positive experience and I'm looking forward to Em exploring music more and more over the coming sessions.

Monday, 9 September 2013

Weekend with Emily (and attempts at dressing)

A slight snafu with a passport meant that Sue and Holly headed off on holiday to the Netherlands without Emily and I on Friday.
Emily enjoying a babyccino at Costa.

This actually worked out quite well, as I think Emily was feeling a little neglected and in Holly's shadow. Being away from her might be good (even if only for a few days) as she would have my attention 100%.

I've not been so hugged or interacted with by her in such a long time. We did a few errands together over the weekend, went to a couple of parks and even had Sunday morning "coffee" together at Costa.

One thing I'd been trying to get Emily to do over the weekend was to put her own nappy and trousers on. She can do shoes and (to some extent) tops over the head. She managed her trousers by herself on a couple of occasions. These successes were met with smiles, thumbs up and high fives. On at least one successful attempt, I actually got a smile and eye contact from an elated Emily.

It wasn't all fun though. There were a number of attempts where she started but go distracted by ... anything. If it wasn't so tragic, it would be comic watching someone try to clothe themselves with absolutely no interest in it, to the point of staring aimlessly out the window.

Not only do I have to pick my battles, I have to pick where I play them out.

Tuesday, 3 September 2013

New School Year!

It's hard to believe that Emily is entering her third year of structured school activity.
Emily on day one of school.

She was in Dragonflies from 2011-2012, Red Squirrels at Rainbows from 2012-2013 and now she's an Orange Tiger at Rainbows for the 2013-2014 school year.

She arrived home today and gave me a massive hug and cuddle, before running off to her trampoline.

Not really sure what this year will have in store for her, or what advances / breakthroughs there will be (if any).

Her class has the addition of another girl (of the three girls in the school, two are Orange Tigers) so it will be interesting to see if there's any female bonding at all.

Watch this space.

Friday, 30 August 2013

Camping in Dorset

We got back today from camping in Dorset with two other families.

I really had no qualms about taking Emily as she's always going on about "tent" and wanting us to cover her with an afghan, duvet, etc. and Holly is at that easy going age where she's not all that arsed where she goes as long as there's food and a clean nappy.

Sue managed to cram everything we needed to into the car - including tent, sleeping bags, clothing, pushchair AND Holly's monstrous walker. We managed to push her around the campsite a few times, much to her (short lived) delight.

The biggest pain was Emily unfortunately. While she was happy to dance around and explore, she really had no about dancing and exploring in the middle of the road, or running off to another part of the camp ground and doing her thing there. While she was awake, Sue and I had to keep one eye on her and one eye on what we were doing - which never really resulting in us relaxing, until after she was asleep.

Emily having a sensory time on the beach.
Holly was the star of the show with her vast appetite. No one could believe that a child that size could eat FOUR breakfasts (banana, cereal, toast, custard/yoghurt) and still be up for whatever ANYONE else was eating. I'm thinking/hoping she's just going through a growth spurt and that we're not going to have a Clifford the Big Red Dog on our hands ("he eats and drinks A LOT").

We capped the holiday off by spending the day on the beach near Sandbanks (near Poole). Apart from getting sand EVERYWHERE, it was a nice relaxing way to spend the day. Emily decided that the feel of the sand was really nice and proceeded to bury her face in it, as well as run her feet and arms in it. The shower that evening was FILLED with sand.

We also got her to eventually accept the water and have a bit of a dip. Small steps, even though she likes swimming (in a pool).

Glad we could get away and it was a good relaxing time (apart from chasing Emily) for everyone involved.

Saturday, 3 August 2013

NAS campaign

1128 NAS NAS ACTION FINAL 230713 72dpi.jpg

I've just signed an NAS campaign, and so should you.

If you go over to Put autism on the NHS agenda you can fill in a campaign aimed at the NHS. As the campaign page states:

"A brand new health body called a Health and Wellbeing board is being set up in your area. It will have a crucial role in deciding what areas of health and social care should be prioritised, and checking if your council and the NHS are being transparent about the support they’re providing adults with autism.

To effectively do their job, they need to understand autism and the current challenges in your area. Otherwise, their role in helping adults with autism will be wasted.

You can help by sending them our message using this online form. That way we can put autism at the top of their agenda from the start."

It does worry me about how Emily will be treated, live, etc. as she enters older stages of her life. Hopefully getting the NHS to think about it and sort things out now will make sure she's well cared for in 10, 15, 20 years' time.

Intense therapy for Holly

At this week's physio session for Sue, it was decided that due to Holly's progress no further intense sessions were required.
Holly in her special high chair.

This was wonderful news, as not only does it mean Holly's progress is going well, we also get to reclaim some holiday time and have a break together! Whether this means we try and steal some of the fading embers of the summer and go away or book a couple of weeks at Christmas, we've now been given a get out of jail free card.

The only caveat we were given was to take Holly's walker contraption wherever we go, so we can keep up with her walking therapy. This thing is a massive thing and could potentially limit any holidays to staycations, but that's not really a problem.

This also means we don't have to wait and see about the Bobarth Centre therapy sessions in North London.

In case you were wondering, Holly IS making wonderful progress. She hates lying down and if you pick her up to sit up, she will throw a strop if you don't pick her up to let her walk around. She's still really weak in her trunk but the dedication and strong-mindedness is there to want to do it. More home therapy around trunk strengthening is really needed and hopefully she will eventually walk unaided.

We've been told she may never be able to do a trek, but instead may either need a cane or walking stick or only be able to walk small distances before needing to sit down again. I'm hoping small distances equates to around 4-5 miles, because I'm there with her on that. Somehow, I assume it's much shorter than that.

Thursday, 18 July 2013

It's not the pox

Having had to take Holly out of nursery early yesterday due to suspected chickenpox, Sue has clarified - via a doctor's appointment this morning - that it is not actually the pox. The doctor confirmed what Sue and I THOUGHT it was - heat rash. The bumps apparently don't conform to what the pox would resemble and they weren't all over her body.

This is good news for all involved - but does emphasise how this heat wave is taking it's toll on poor Holly. Even though she's not "poxy", she's still listless, grumpy, has a upset stomach and seems to break out grizzling for no reason. All, apparently, symptoms of being stinking hot.

At the behest of my mum, it really does sound like a good time to invest in an A/C unit for the house.

Wednesday, 17 July 2013

Chickenpox for Holly

Got a call today from Busy Bees that Holly potentially has chickenpox.

She's been quite moody and crabby the last couple of days, and this would explain her foul mood. I had to race home to pick her up before my call today at 2pm.

I still swear she's had chickenpox before, but I was told that depending on how mild she had it the previous time, she could get it again.


She's currently quite placid and sleeping, so a little better off than she was the last couple of days.

Tuesday, 9 July 2013

New report shows US 18 times ahead of UK in Autism research

If you're keeping score of UK autism research investment vs US autism research investment, you might as well quit now. The US wins. And wins again.

A new report, undertaken on behalf of Research Autism, found that the US spends an average of 18 times the amount the UK does on autism research in accordance with population size. The US spent the equivalent of £75.79 per person with autism in 2010, while the UK spent just £4.26.


Still, I feel as this is a global epidemic and not constrained to national borders, ANY research being done is of benefit.

I would assume though, that with the budgets what they are, each region needs to be quite selective in what their aim their research at. I feel (without any basis apart from hunches) that the deeper work into the gut / autism relationship is being spearheaded quite deeply in the US. A lot of the specialists we've seen in the UK refuse to acknowledge any relationship and believe a change in diet to be purely a matter of choice.

Just the other day there was a hyperbolic report from the US of a change in diet "curing" a child's autism. It's a little extreme, but I believe the principles to be sound and this seem to be coming from the US.

The difference in research spending is fine; I'm just concerned with the sharing and being able to apply the best results to the afflicted. If the research becomes an "us" vs. "them", we will lose every time. 

Thursday, 4 July 2013

Further proof regarding the gut - brain connection with autism

Read an article today about a boy in the US who seems to have been "cured" of autism by going on a gluten/dairy free diet. I read this with massive scepticism, but feel positive about the overall message.

Here's a clip from YouTube, but I have to warn you, the interviewer is really really REALLY annoying.

Sue and I have been in two minds whether any of the "hokey science" stuff we're doing with Emily is actually of any benefit. This includes cutting out gluten and dairy and also the homeopathic remedies she's been on. They say that dairy effects will be noticeable in 3 days but gluten effects can take 3 months to see.

We haven't really seen any dairy-related changes yet, but are hopeful that all the research does point to a gluten-free gut paving the way to a healthier gut and a lessening of the autistic behaviours we've come to tolerate.

Monday, 17 June 2013

Autism Show

This past weekend we traipsed out to Excel in the middle of East London to attend the Autism Show, put on by the NAS.

We weren't really sure what to expect, but knew that discussion around diet would not be on the table. When we go there, Sue sussed out the seminars (really just 20 minute powerpoint presentations) that she wanted to attend. My role was really to ensure that Emily didn't wander too far off or make too much of a nuisance of herself.
The stands were quite a mixed bag - there were sensory toy vendors, furniture vendors and a LOT of schools. I mean A LOT! Most of them were private and looking to score around £50,000 / year to educate our young. Nice if you have the money I guess.

The main area of the event was the stage area where a number of events were taking place, including Autism’s Got Talent - showcasing the talents of those in the spectrum. Apart from it being crazy loud, it was enjoyable hearing the event from ANYWHERE in the show.

It was a long day, and the seminars I attended didn't tell me anything new, but it was nice to be around like minded people and in a place where we didn't have to explain or apologise for Emily.

Saturday, 8 June 2013

Emily's Detox Fever

The last 24 hours has seen Emily flush, quite lethargic and very feverish (and not for the flavour of a Pringle!) - to the point where she's asleep again right now ... at 4pm.

We've had her on her second round of homeopathic cleansing (part of the CEASE therapy that is recommended for Autistic people - depending on who you talk to) to rid her of the effects of vaccinations.

The first round of the CEASE therapy, to repair the effects of any antibiotics Sue might have taken while preggers with Ems didn't really garner any results (apart from loose poops from too much vitamin C) and we were really not convinced this latest round would produce any either.

Personally, I'm taking the fever as a good sign that this therapy is working. I just hope for Em's sake it subsides soon as you really don't wanna be burning up any longer than you need to. We have Calpol at the ready and are administering that and water as needed.

Em's also well into her gluten-free diet now, so I don't know if any of this is a result from that. I'd hate to think so as it's really not a terrific advertisement for going gluten-free: a raging fever.

Tuesday, 4 June 2013

New homeopathic course

We finished Em's first homeopathic treatment a couple of weeks ago. Sue met the homeopath last week and got a load of new tablets and potions, etc. for us to give Em.

Day one of the new regime was yesterday, so here's hoping we get some good results from this round.

Sue and Em are also getting fully into their gluten-free diet. It's stupid expensive, but if we can bring Em around - even slightly - it will be worth it. Sue's also toying with taking Em off milk (lactose or casein or something) to see if that provides any more impact.

All signs point to getting the gut sorted out being the first milestone on the road to a better life, so it's worth a shot doing all this.

Emily swimming

A shot of Emily in A pool.
We took Em for a "taster session" swimming lesson last night to the Westcroft Leisure Centre. Much to my amazement, it went incredibly well.

Em's had a mixed history with pools. We took her to aquatots when she was small, but since then her and pools don't get on very well... at first. Trips to Canada and Spain have been met with trepidation at first and then reluctant acceptance.

I'm happy to say that from where I sat... behind glass, with Holly on my lap, Em looked relaxed and really into the session.

As I wasn't allowed to take photos (something to do with perverts snapping children in pools), I've attached a photo from last June when we went to Spain, to show that Em DOES like pools eventually.

Em's going along to Westcroft next Monday for another taster session, but all signs are full steam ahead for swimming lessons for her. Of course, it didn't hurt that last night was one-on-one and consisted more of playing than lessons, but you have to start somewhere!

Friday, 17 May 2013

Emily's adult future with autism

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

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

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

Tuesday, 7 May 2013

Random words. Could it be communication?

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


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.

Thursday, 2 May 2013

Terrible story from Ottawa

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

I read a story today on 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.

Monday, 22 April 2013

Silver lining to the unemployment cloud

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

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

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

Friday, 19 April 2013

Intensive therapy for Holly

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

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

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

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

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

Tuesday, 9 April 2013

MMR jab for Holly

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

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

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

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

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

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

Friday, 5 April 2013

Cease therapy for Emily

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

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

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

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

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

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

Tuesday, 2 April 2013

Therapy is paying off for Holly

Sue just called me with two pieces of excellent news.

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

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

All around good news then.

Wednesday, 27 March 2013

Emily's annual review

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

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

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

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

Sunday, 3 March 2013

Holly died a year ago today

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

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

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

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

Friday, 1 March 2013

DLA application

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.

Thursday, 14 February 2013

Dancing with my mummy

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.

Tuesday, 12 February 2013

Holly's additional therapy

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.

Friday, 25 January 2013

Can you grow out of autism?

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.

Tuesday, 22 January 2013

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

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.

Monday, 14 January 2013

Holly's movements

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.

Thursday, 3 January 2013

2012 in Review

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.