Three years later...

 Well, today is the first of many milestone birthdays for the kids. 

Emily turns 13 today, so is no longer a "kid", she's a fully fledged teenager. 

Truth be told, she's been moody and "teenish" for the last few months, so it was only a matter of time for her age to catch up.

Holly, who will jump on any occasion with both hands, has been harassing Sue and I about Emily's birthday for weeks - can we have a party?, what decorations are we going to have?, need to get presents, etc. 

It got to the point that Mother's Day yesterday was more of a Mother's Morning, where Sue had pressies and breakfast in bed, then it was - we need to blow up balloons, have we got the bunting?, we need to go and buy party food. 

I'm glad the kids are growing up, but really lamenting, like most parents, that small kid phase where you're the centre of their world. I realise I wasn't the best teenager, and I'm hoping that our kids won't take after me, but time will tell. 

13 today for Emily. Still can't believe it.  

Four years on

So the last post was February 2014, and it's now February 2018 as I type this.

A lot has happened in the space of four years. Shortly after we discovered the joys of ABA, we started a home program - at great cost. Sue left her job around April 2014 (due to her role being relocated to Birmingham) and she was able to become Emily's full time ABA tutor. We still needed a consultant to create a program and let us know if we were doing it correctly. That's the costly bit.

After a year or so of doing an ABA program, we were able to collect enough data to demonstrate that Emily was making progress and, in her case, ABA worked. We then went to local authority to get them to change Emily's school from a general Austism school, to an ABA-specific one. We found a great school called Rainbow in Wandsworth and they had a place they could offer her.

Unfortunately, the local authority said no (assuming due to cost) so we took them to tribunal. We plead our case, with a raft of experts pleading our case, and the local authority and Emily's existing school plead their case. You can't argue with science (which is what ABA is backed by).

Emily eventually started at Rainbow and it was all good. She's still there and getting on very well. I believe ABA has really helped her. She's still a quiet, reserved child and you can tell she is "different", but I believe the change in both school and teaching methods have been very beneficial to her.

We've accepted, quite begrudgingly, over the last 9 years that Emily is who and what she is. There's no magic cure. You deal with the cards you are dealt and find the silver lining in the cloud. Emily is a lovely, loving child who loves her hobbies -books, puzzles, etc. She can ask for motivators like rice cakes and she can alert you to problems (like needing the toilet, or the fact that she has a bloody nose).

I do wish I could snap my fingers and have an actual conversation with her, but I need to focus on the good things, not the "wish I could haves".

Emily turns 10 next month and it's been quite the decade of ups and downs.

As I write this, Sue if trying to finalise Emily's EHCP (Educational and Health Care Plan). As usual the local authority are trying to downplay the effect that ABA has had on Emily in the last couple of years. Something we have fought so hard for. It's a shame that we still have to fight.

Oh well, nothing worth doing ever happened easily did it.

Over and out!

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.

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. 

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.

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.

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.

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.

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.

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.

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.

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.

Birthday approaches

It's hard to believe that Em's birthday is fast approaching. When I started this blog it was really only a document of Sue's pregnancy. I'm really glad I decided to keep at it and document Em's first year.

There's been so many changes in the last 11.5 months. She's gained eight teeth, started weaning (and self weaning to a degree), she's become more vocal and an actual joy to be around (before she just wasn't all that aware of her surroundings).

I'm constantly amazed how spending time with her can be so enjoyable. She doesn't really do much, can't hold a conversation and is quite dependent for everything - from drinks to replacing toys that have fallen out of arm's reach. For some reason though it works, and she's just a real enjoyable time pit.

I really look forward to what the next few years have to offer. As I've mentioned in this blog time and again, I'm quite cynical that all will be smooth from now until the end of her days.

If there's anything having a child has taught me, it's to look back, not only on my life, but the lives of those I've grown up with and just think about the choices we've made and where they led up to. Whether it's the teen mother, the tearaway junkie who had it all and threw it away or the high school loser who's now raking in the money.

All these futures are available for Em and I guess it's up to us to guide her properly so she can choose the right one.

Getting to grips

Well, it's been another few days of ups and downs.

The ups have pretty much been isolated to Emily sleeping loads. The downs obviously involve her awake-time activities, or should that be activity - feeding.

We assume she's going through another growth spurt as she's spending all her awake time suckling at the teat.

It's making Sue rather forlorn as she's merely a food conduit, and can't really enjoy Emily on any other level at the moment.

Me being dad, and feeling quite neutered not being able to help with the fooding, am trying to help out in other ways.

I took Em out for a stroll around the neighbourhood yesterday in the pram and sourced dinner and am doing laundry and nappy changes where I can.

Now that life is becoming a bit more routine with the baby (if that's possible yet), we're moving on to "phase two" activities, getting all the legal and paperwork stuff out of the way.

With Emily's registration last week, we can move on to getting her a passport and claiming for benefits and childhood credits. Also need to sort out a bank account so we can begin regular deposits into her education / PS3 / booze on 18th birthday / new car fund.

Managed to nab another cute pic of Emily. This time she's ready to go with her bluetooth headset sorted out!