Sunday, 29 January 2012

Occupational therapist's hints and tips for Emily

Sue had a call with Emily's occupational therapist on Friday and she was provided a lot of helpful tips.

The one I've really taken on board is deep tissue massage to calm her down. Seems that when she's over stimulated, Emily seeks pressure to help her deal with things. If I can give her a nice firm massage on her neck, arms, legs, feet or hands, it seems to bring her back in line.

I've been using this over the weekend on a number of occasions and it's worked a treat. Instead of letting her just get over her tantrum, I've been able to help prevent it from almost the onset by providing her with pressure.

The occupational therapist suggested giving her the massaging action every two hours (not possible during the week) and even perhaps putting Emily to sleep in a sleeping bag full of stuffed animals.

There were other points discussed, but this is the one I've really gone to town on.

It really is going to be an uphill battle with Em and a real attitude and life change for Sue and I. We can't be part time carers or part time Autism-friendly parents for Emily. It's all or nothing. I do worry how this will effect Holly as she gets older, as our lives will have to be tipped to making things OK for Emily. Hopefully she'll understand and not resent Emily. Hopefully she won't be in the same boat as Emily.

Sometimes, being a parent really sucks.

Wednesday, 25 January 2012

2am is the new 7am??

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.

Tuesday, 24 January 2012

Emily's SEYSCAT report

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.

Monday, 23 January 2012

New Year's Resolution

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.

Wednesday, 18 January 2012

It's official. Emily is on the autism spectrum

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.

Tuesday, 17 January 2012

Reading recognition

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.

Sunday, 15 January 2012

Crappy times

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,

Monday, 2 January 2012

A tale of two poos

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.