Baby Times

2am is the new 7am??

noreply@blogger.com (Richard John) — Wed, 25 Jan 2012 09:36:00 +0000

Emily's really starting to play up with regards to the Holly situation.

She's not eating at the table properly and dinner / breakfast time has become a bit of a mental warzone.

This morning, however, was one of those times you could have just brained her. Just before 2am she came bounding into our bedroom all smiles and laughter, ready to play, etc. 2 AM!

I eventually took her into the spare bedroom where she EVENTUALLY got to sleep... around 5am. You can imagine the joy waking her up today.

We thought about it after the fact, and it's been a real shake up for her. She won't go to bed in her own bed either. We've had to let her fall asleep at the foot of our bed, like the family dog. I imagine she must have turned in her sleep last night and woke slightly to find she wasn't where she started the night and just wanted to return.

I don't know what the solution is. Discipline and punishment and all the stuff you do to a normal child go out the window with someone like Emily - they just won't respond to it. We have to instead try to get to the root cause of whatever the situation is and try and nip that in the bud. It's difficult, though at 2am when the root cause sailed some 5 hours ago.

Everyone keeps saying that Em will stop reacting to Holly and start dealing with being a big sister, but having read the SEYSCAT report yesterday and knowing that Emily isn't like other children (who eventually come around), I'm not betting that's going to happen all that soon.

Until then we put up with horror meal times, screams when we go near her bedroom door for sleeps and the general tantrums of a child who can't express that she doesn't want to share mummy and daddy any more.

Emily's SEYSCAT report

noreply@blogger.com (Richard John) — Tue, 24 Jan 2012 21:16:00 +0000

Having had the Autism Spectrum bomb dropped on us last week, it was a case of kick 'em while they're down today as a draft copy of the SEYSCAT report came home with Emily from Dragonflies.

This report is compiled by a number of professionals - paediatrician, occupational therapist, music therapist, Emily's teachers, etc. - as well as from comments from Sue and I.

Woven together into a 9 page document it played out rather damningly. As much as Sue and I want to put our head in the sand and believe that Emily's only brushing the end of the spectrum and she's 99% OK, this report brought us straight back into reality.

I won't go through everything it said as it makes for some sad reading, but it picked up on her fine and gross motor skills being underdeveloped; her language being well behind - which is no secret. It even mentioned the way she walked down the stairs - preferring both feet on one step and then putting one forward - as being immature. I didn't even notice it until this evening. BTW, walking upstairs was fine.

The report did end saying she's happy, bright, and all the other positives that you can pretend even start to balance out the negatives. There were also some strategies that Sue and I have to continue to take on board - MORE inset puzzles, for instance.

It's not going to be an easy ride and every time we think we can cope, we keep getting knocked down another peg on the Parents Who Can Deal With Their Child's Disorder (PWCDWTCD) chart. Hopefully the bad news will stop coming and we can turn this situation around.

As Sue said, she's only three, so all hope is NOT lost, but it will take a lot of effort from us. It will also possibly take a major change in lifestyle and the way we do things to accommodate Emily's condition. If it results in future results being more positive, it can only be worth it.

New Year's Resolution

noreply@blogger.com (Richard John) — Mon, 23 Jan 2012 12:20:00 +0000

Apart from getting back into shape (recent photos are NOT flattering), I've decided that my priority new year's resolution is to be much more tolerant with Emily.

Given her recent prognosis and the fact that she DOES drive us mental with her meltdown and seemingly erratic behaviour sometimes, I really need to count to 10 and not lose my rag with her more than I do.

However, with her reaction to breakfast this morning and subsequent meltdown, I don't think I could have chosen a more difficult resolution... but resolute I stayed.

Arghhh.... we'll see which one lasts longest - the gym or Emily.

It's official. Emily is on the autism spectrum

noreply@blogger.com (Richard John) — Wed, 18 Jan 2012 11:15:00 +0000

We met with Emily's head teacher and the local paediatrician (who works closely with Dragonflies) today. It was vaguely billed as "assessment day".

We were told what we'd assumed for ages - that Emily is on the autism spectrum.

However, like all things, there is hope and light at the end of the tunnel. It just might be a different tunnel from the rest of us. We discussed continued learning, whether she'd be able to function as a normal member of society, get an education, etc.

The immediate strategy for Sue and I is to continue Emily's communication, but as we discussed, it really needs to be on her terms. She will talk - and we were told 50/50 that kids in Emily's situation (or worse) talk before they're five - but talking is a part of communication.

Emily already lets us know certain things - she'll bring us a plate or a cup; she'll grab your hand and lead you to the bookshelf; she'll sit on the kitchen floor when she needs to go potty; she'll make your finger point to the phone screen or tablet screen when she wants to see something (invariably a Hairy Maclary video).

I'm not too concerned about Emily getting her point across, it's just that society dictates people get their point across in a conformist manner. Emily can't go into a Cafe Nero when she's 16 and grab the cashier's finger and point at the board for what she wants.

The outcome today was that, with our continued support, there's no reason Emily can't have a fulfilling life and become the world expert in whatever she wants - she just won't probably be a "frontline" worker... so she won't be the Cafe Nero cashier... she might OWN Cafe Nero, though.

Reading recognition

noreply@blogger.com (Richard John) — Tue, 17 Jan 2012 11:21:00 +0000

Emily is now able to recite - from memory - 99% of Hairy Maclary's Bone, which is amazingly impressive. She gets stuck on who can't make it out of the building site, all cluttered and stoney.

Today she unveiled the latest addition to her vocabulary - "upside down". Of course, this being a small child the words actually sound like "up is down". I thought at first that she was espousing some existential philosophy until I noticed that the book she was looking at was indeed "upside down".

Previously, she'd look at a book upside down, right side up, left side right, whatever and not really care, as long as there were pictures to be seen and a story to be told to her. It's quite impressive that she's starting to make the distinction between what is correct and what is off kilter.

Crappy times

noreply@blogger.com (Richard John) — Sun, 15 Jan 2012 21:00:00 +0000

It happens. You go out for the afternoon and you forget nappies. OR you mistaken the newborn nappies for your toddler's nappies.

The fun is when the toddler REALLY REALLY REALLY needs the forgotten nappies.

This happened yesterday when we went out for a nice relaxed four hour lunch (or as small children refer to it "a prison sentence").

Emily was thirsty and managed to neck back about 3 glasses of orange juice before settling down. This always bodes well the other end.

Anyway, we changed her once quite early one due to this intake. The next change was signalled by the upturned nose whenever her backside wandered by.

Fair enough.

However, that's where the nappy supply ended. The demand, however, continued in some sort of horrible economics example gone awry.

I ended up having to scoop her "produce" out of the second nappy to give her more room for manufacturing. Of course, to teach daddy a lesson, Emily took this opportunity to have a nice warm wee all over my hands and the floor.

This being an adult restaurant, there were that many places conducive to changing a child's nappy. As it was, the delicate exercise of "remove, scoop out, and reattach" resulted in some of Emily's "produce" going places it wasn't intended - her knee, the back of her leg, etc.

She was cleaned up as best as possible, given the circumstances, but at this point she'd pretty much booked herself a bath at the very EARLIEST convenience.

Thankfully nappy-wise, as we'd brought far too many Holly-sized nappies, we were able to pad Emily's full stinky nappy with a new fresh Holly nappy until we got back to change her properly.

It's strange how the promise of a rather relaxed languid lunch can turn into a toilet fiasco of the highest order. The sooner we toilet train Emily, the better everyone (well, me) will be,

A tale of two poos

noreply@blogger.com (Richard John) — Mon, 02 Jan 2012 17:53:00 +0000

Emily's getting better at going to the loo (loo, loo). Today we went on the toilet, as opposed to the potty and she did two mighty logs... which visibly took it out of her. Congratulations were given by all adults in the house.

Holly on the other hand should be on Britain's Got Talent. Her backside is like a fire hydrant. A gentle tickle to clean it results in a spurting jet of yellowy-green poo squirting everywhere. Last night offering was double the pleasure, double the fun as she had a squirty wee at the same time. The amount of towels we have to change is a given, but the amount of flying wee-soaked jumpers I have to change is getting out of hand.

The midwife told us that the bum geyser was to be expected, so it shouldn't be too much of a shock. Why it is every time is still beyond me. I (and my jumpers) can't wait until this phase passes, really.

Goodbye 2011. Welcome 2012

noreply@blogger.com (Richard John) — Sat, 31 Dec 2011 13:35:00 +0000

2011 has been quite a year for our children in many ways. Firstly Sue got preggers in (or around) March and spent the rest of the year getting larger and tireder. Emily celebrated her third birthday in March as well.

Emily also started her Dragonflies school in September, which has been a godsend.

Lastly, we welcomed Holly Grace into our little family only days ago (26th December).

Through the year, Emily has started to gain her own voice and personality. Things she used to do as a matter of us asking she now questioned and pushed back on (mostly food related). She also figured out how to be moody and angry and sulk (the number of times I've had to recently pick her screaming body off the floor in a shop, etc. are too numerous to count) ... and basically do all the terrible two things a child does at the age of two, a year late.

Emily still hasn't got around to accepting Holly, but that will come. I've taken great pains to ensure that Emily doesn't feel left out, and hopefully 2012 will prove to be quite a year for both our children.

It's all in a name

noreply@blogger.com (Richard John) — Tue, 27 Dec 2011 21:23:00 +0000

We narrowed it down to Chloe, Olivia or Holly.

While Emily and I went for lunch, both Sue and I seemed to have the same mental conversation with outselves - that Olivia just wasn't "soft" enough for a little girl, the way Emily is. We could go for a Livvy or similar, but it just didn't take.

When we got back from lunch, Sue said it could and probably should be Holly as it was a nicer, softer name.

We proceeded to call her Holly from that point on. However, Sue had previously written the three names on pieces of paper ready to pull out of a hat to see which name would rule. In the meantime, they'd fallen on the ground.

We proceeded to ask Emily to pick up the paper and give them to Sue. We read them in the order Emily handed them to Sue - first was Holly, second was Chloe and third was Olivia.

Thanks to Emily's fate-driven hand, our child was confirmed to be called Holly, middle name Grace. I couldn't slip the comedic Holly Esther in there unfortunately.

New arrival

noreply@blogger.com (Richard John) — Mon, 26 Dec 2011 12:45:00 +0000

Our new arrival came at 11.45 this morning. She looks quite fine and is currently having a feed on mummy. We're still trying to figure out which of our name list she suits.

I had a nice 15 minute cuddle whilst they stitched Sue back up. There's a lot of newborn stuff I've forgotten. It's going to be quite the learning curve again.

Almost there

noreply@blogger.com (Richard John) — Mon, 26 Dec 2011 10:51:00 +0000

The doctor's been round, we've had a nice chat and we should be going into the operating theatre in the next 20 minutes or so.

Take two

noreply@blogger.com (Richard John) — Mon, 26 Dec 2011 09:08:00 +0000

We had a lovely Christmas with dinner, games and presents and we're now at the hospital again ready for Sue's planned c-section.

Not sure what time the op is but Sue's having all the prep work done at the moment. Here's hoping we don't have to wait all that long.

False alarm

noreply@blogger.com (Richard John) — Fri, 23 Dec 2011 14:21:00 +0000

Sue has been examined and it's definitely c-section. They gave us the option of today or boxing day... So we're coming in on Monday now. Gives us the chance to have a family Christmas after all.

We get to come straight into the labour ward on Monday and hopefully have a baby around 2pm.

Moved upstairs

noreply@blogger.com (Richard John) — Fri, 23 Dec 2011 13:40:00 +0000

They came to get sue and move her from Bubby purgatory up to the maternity ward.

We might see a doctor now!

Even longer now

noreply@blogger.com (Richard John) — Fri, 23 Dec 2011 11:58:00 +0000

The nurse came round to tell us Sue won't be seen until 1 or 1.30 at the earliest. She'll be assessed then and see if they want to break waters and start the 6 hour wait and see.

I feel we may have a Christmas eve baby at this rate.

Still waiting

noreply@blogger.com (Richard John) — Fri, 23 Dec 2011 11:40:00 +0000

All that rush to get here for 8am. It's 11.30 now and we're still waiting for a doctor to come by.

Fluids and blood pressure have been taken, but we want to get this show on the road.

In hospital

noreply@blogger.com (Richard John) — Fri, 23 Dec 2011 08:57:00 +0000

Sue called the hospital this morning at 7am to find out when to come in for her induction. Happily she was told 8 o'clock. We took it they meant am and not pm. Two hours later and our journey has begun. Sue is munching on breakfast and we're just waiting to be seen by someone.

Emily's choice of verbalising discomfort

noreply@blogger.com (Richard John) — Mon, 19 Dec 2011 14:28:00 +0000

When Em gets upset, and this happens quite a bit now she's getting her own personality, she tends to start her yelling, crying, etc. and segue into snippets of her favourite nursery rhymes. You can see the tears streaming down her face, listen to the screaming cries and just make out "... all day long." (from Wheels on the Bus).

It's quite discomforting as it reminds of those films where people are being tortured and to take their mind off the hideous act at hand they sing their favourite songs and the like.

Before you call child services on us, we are NOT torturing her and she did not learn this behaviour from such films.

My big hope for 2012 is this whole episode will be replaced with her actually being able to tell us what's wrong, unless she is and "all day long" is actually code for "I'm constipated and my stomach hurts."

Potty training fail

noreply@blogger.com (Richard John) — Mon, 05 Dec 2011 20:29:00 +0000

We're making SOME headway with Emily as far as potty training is concerned. Some does NOT equal a lot. We put her on the potty and the toilet and she doesn't have a meltdown. She also doesn't produce all that much.

Having said that, the other night Sue had Em on the potty and turned her head for a minute to grab a new nappy. Before you knew it, all the "love" Em wanted to share was working it's way out from her new location, leaning up against a cream leather chair in the living room.

Sue, thinking quick, dove under Emily with fully cupped hands and received Emily's chocolate gift open palmed. Looking for a plastic bag, and being fully preggers, Sue ended up chundering her recently finished meal into the sink.

Seems both John women were eager to get rid of that night.

Since then, we've pretty much been eagle eyed on Emily when she's on the potty, ensuring that what needs to come out on the potty doesn't come out anywhere else.

It's a long, horribly messy and quite crappy job, but some day it'll be over... won't it?

Is Emily's condition my fault?

noreply@blogger.com (Richard John) — Fri, 25 Nov 2011 14:27:00 +0000

Every week there seems to be new research published on Austism, ASD and it's affiliates like Aspergers.

The latest, published in a copy of the Metro a week or so ago, postulates that parents in technology (check) and/or science (not check) could be passing on the gene that causes autism.

Hey cool. With another one on the way next month, that's really the kind of research I want to be reading!

The positive element from the article was the list of famous historical figures who had autism to some degree - including Albert Einsten, Andy Warhol and Charles Darwin. They all eeked about a place for themselves in history, so there is hope.

Emily and adult music

noreply@blogger.com (Richard John) — Sun, 20 Nov 2011 18:44:00 +0000

Tonight, Sue was catching up on her Glee on Sky+ (as one does when coming back from a weekend away).

The show's sponsor, who is imminently forgettable, uses Queen's "We Will Rock You" as the song during the ad.

Sue watched the ad once and then proceeded to fast forward through the actual ads. During the quiet minute or so, Emily proceeded to sing, in her little 3.5 year old voice "we will, we will rock you" a couple of times.

Sue and I were utterly dumbfounded, as we've never listened to this song with any intention of teaching it to Emily and are not really sure how many times - if any - Emily has actually listened to it with us.

We're wondering if Helen (or Dragonflies) is planning a children's version of the Queen/Ben Elton musical or what the actual reason behind Emily's new love of the Queen sports anthem actually is.

Now that I know she's getting into "adult" music, the race is on to teach her the first Duran Duran album.

Parent Teacher Meeting

noreply@blogger.com (Richard John) — Thu, 20 Oct 2011 20:59:00 +0000

Another milestone for Sue and I tonight. We had our first parent teacher evening.

You hear about them, you see them in sitcoms, but you never really know what to expect.

We went through the initial feedback regarding Emily and how she's settled in during the first half of the first term as well as the outcomes of initial Individual Education Plan (IEP) goals that have been set. Of the four goals, Em's excelling in 3 and needs help in the fourth.

Sue and I have some strategies we can try at home, including helping Em play more. We need to get more inset puzzles and give Em a more structured "play time", perhaps after dinner.

There was really two ways the meeting could have gone - a) your child is a no-hoper or b) things are looking good.

Thankfully, Emily's showing signs of improvement. There's no magic bullet getting her sorted out overnight, and we realise it'll be a long, hard slog but any encouraging news is ... encouraged.

First school meeting

noreply@blogger.com (Richard John) — Wed, 19 Oct 2011 12:05:00 +0000

Had our first school meeting this morning.

Wasn't really sure what to expect, as I can imagine loads of parents actually work and can't really afford to take off 9.30 - 11.30, even if it to discuss their child's future.

As it was, I was only the second dad there, and there were about 8 mums, including our Susan.

The meeting was quite informative, as we discussed what do with regards to applying for school's next year.

The school impressed upon us that, as parents of Dragonflies, we're in a unique position as we have to apply for a mainstream position, but our child will also be assessed through the year to see if they qualify for an SEN, basically a legally binding document outlining the requirement for special educational needs.

The groundwork for the SEN is going to take place during the second half of the first term during action called the Statutory Assessment Process (SAP), where a number of professionals - doctors, therapists, etc. - assess our children and then write this report which recommends either further special needs education or moving into mainstream school.

We need to do the mainstream app online, and choose the best school closest to us. This application has to be completed by mid January. The SAP will continue well into next year and we might find our child has a mainstream place before the SEN decision. We were told to accept the mainstream place as an SEN may not be forthcoming at all.

A lot to take in, but we eventually moved to the Children's Centre, had tea and biscuits and a more informal get to know you, which was nice.

Don't be (nappy) rash

noreply@blogger.com (Richard John) — Tue, 11 Oct 2011 14:42:00 +0000

The last couple of days Emily's been battling the red raw nappy area.

It's been unpleasant for her, as well as Sue and I as we've been woken up through the night with Emily screaming in pain. I guess it doesn't help that she had the runs at some point over the last few days as well. That kind of effluence rubbing against any part of your skin is going to irritate after a while.

This brings us to the topic of nappies. We've almost run out of them today (there's about a day's worth left) and I was THIS close to going to Tesco this morning to restock, until I realised that Costco have their nappy deal on. That plus picking Emily up from Helen's equals after "school" excursion! Sorted.

However, during the day we had our supply of nappies arrive from the NHS. As Emily is now over 3, she qualifies for continence assistance. We have supplies to last until January now.

Quite fortuitous that my trip to Tesco was called off.

Back to the rash issue. Dragonflies have said they'd help with Emily's condition by changing her more often. Now we have our "stash" we can easily supply them a load at once, instead of the single nappy in the book bag which has been my solution to date.

Any type of "down under" rash is unpleasant, but when you can't air your area out, I can only imagine the moist pain farm Emily's been walking around with.

New words

noreply@blogger.com (Richard John) — Mon, 03 Oct 2011 08:04:00 +0000

Whether it's new school, or Emily's finally getting around to talking, she's actually coming up with new words. Some are helpful in her day to day and actually enable her to communicate - while others are just baffling.

Her books are on a higher shelf than she can reach and for a while now, she'd grab the hand of any available adult and drag them over to help her select a book. This weekend, however, she looked at me and said "Come. Help." and dragged me off to the shelf. I felt this was a real step forward in her ability to verbally communicate.

She's been saying "help" quite a bit lately, but it's not always in the best context. Out for lunch yesterday, Sue had to take Em to the loo. While in there, Emily started yelling "help. help." obviously to get Sue to help wipe her bum or her nose, or whatever. Thankfully, however, child services weren't alerted.

Emily's also been saying the phrase "A dog. A cat. A MOUSE!" quite a bit lately, and Sue and I are quite baffled as to the origin of this. It's not in a book and its not in a TV show or DVD that she watches. If it's her way of communicating, we're also stumped ... unless she wants some new pets and offering us her wish list.

She's still saying the catch-all "bread" for all manner of food, but she seems to understand in the morning that bread/breakfast/cereal means at least a trip down the stairs is in order.

We're getting there at a glacial pace, but at least the journey continues forward.