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Tiny Tyger, Baby Bear and Me: August 2015

Saturday, 22 August 2015

What If We Didn't Know?

Baby Bear has come on leaps and bounds with his communication even since I last wrote about it a couple of weeks ago.  In fact, even since yesterday!

The Wolf is outside with Tyger enjoying the sun.

Things are good.  Right now.  At this very moment.  And, see, that's the thing: I don't expect it to last.  I don't mean in the long term or for the whole week or even the whole day; I mean right now things are good but in 30 second's time that could change dramatically.

That's the reality of living with any children, I know, but especially when autism is involved.

Yesterday morning things were going pretty well and the cubs were both relatively happy.  Both struggle with the transition from sleep to wakefulness so mornings can involve a lot of seemingly baseless tears (or maybe a breadstick breaking in half or me shifting half an inch to my right really are on a par with a serious injury) but all was calm...until Tyger decided he needed (not wanted, needed) to use the DVD player remote as a phone.  I explained he couldn't because we needed to know where the remote was, couldn't have him pressing buttons on it and he already had lots of phones to play with.

So he ran at me and headbutted me in the chest.

Later on, the Wolf and Tyger were play-fighting and messing around with foam swords.  It's normally great for me because it burns some of Tyger's seemingly endless energy (the energy he normally expends running off to rooms he's not allowed in, rolling around on the floor and kicking his brother, reaching things he's not allowed and having meltdowns)  This time, however, the game ended when - out of nowhere - Tyger gauged the Wolf's forehead.  As in, it broke the skin and and the Wolf has a nasty big scratch.

I know kids will be kids but when your three year old repeatedly kicks his little brother or wraps himself up in a curtain or pushes his brother or throws heavy toys or hits his brother or chases the cats or chases his brother or smacks the window or...you get the idea...after being told off/being taken away/had toys confiscated (and by repeatedly, I don't mean he'll do it again at some future point but will go straight back to it immediately) until I have no choice but to physically stop him, at which point he'll scratch/pinch/kick then it's not just usual three year old behaviour.  He'll keep going with the acting out and violence until it hits a point where he just breaks down and screams and cries and scares himself (he has - during these meltdowns - managed to force out the words 'help me' between wailings and sobs and it's pretty heartbreaking).  With such a great vocabulary and advanced problem solving skills it's very easy to assume he knows what he's doing and think he should 'know better'.  It's easy to come to the conclusion he's just 'doing it for attention'.  I find myself saying, 'why do you do this?' even thought I know why.  I know he has ASD.  I know he has sensory problems completely different to his neurotypical peers.  I know he acts out because he's actually really fracking anxious.  I know he can't really help himself.

I know.

What if I didn't know?  Many people look at Tyger and find it hard to believe he's autistic.  Even the professionals I've seen who agree with me are quick to call his ASD 'mild' and 'subtle' and 'on the end of the spectrum'.  If my sister didn't have a diagnosis would I ever have suspected?

How many families are out there right now with their own Tiny Tygers just struggling along without understanding why their child who they love and try their absolute best with just seems so alien to them?  How many parents are blaming themselves and assuming they've failed their child?  How many are going to GPs or health visitors to be told there's nothing wrong, even though they know something's not right?  How many are accused of 'indulging' their child and making them naughty?

Even more frightening: how many parents are out there right now blaming the child?

These questions upset me.

Sometimes I feel like I'm failing Tyger.  I lose my temper, I shout, I stick him in front of the TV or his laptop when I just don't know what else to do with him.  But I'm trying.  At the moment, I'm building up a collection of sensory tools for him.  It's a start and it makes me feel like I'm being proactive and when I think about all the parents out there with children on the spectrum who have no clue, I think I have an advantage.  Tyger has an advantage.  We'll get there.

I've commandeered his spaceship to use as a sensory room.
There are a couple of soft Henry Hoovers for throwing/squashing.
A Henry bin full of fiddle toys/light toys/fabric/biting toys etc.
Ear defenders and sleep mask for sensory overload.
A beanbag for rolling around on.

I know this post has been a little less humorous than usual so in case it's been a bit too depressing, I can assure you there are upsides to living with an autistic child.  Yesterday we were in the garden and my mum started up the ride-on mower (we currently live with my parents - I don't make my mum come round and cut the grass at our house!) and Baby Bear went mad.  He didn't have a meltdown or start crying but he started shouting at the mower.  He was shouting to the point where he was shaking with the effort!  Of course, Tyger joined in shouting gibberish because he's a little mimic and the Wolf found this all amusing.

Wolf: 'That's right.  You tell that mower off.'

Tyger: 'Off!'

He does take things very literally.  Bless him.

Linked with:
Everything Mummy

My Random Musings

The Twinkle Diaries

Sons, Sand & Sauvignon

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Sunday, 16 August 2015

Look into My Eyes

So, this is part two of my updates.  This time I'm covering Tyger (because I mention him sooo rarely...).


Tyger had an appointment with a speech and language therapist as part of the diagnostic process recently.  It went pretty well.  She was lovely and told me she 'could see what I see' (i.e. Autism).  She gushed about Tyger quite a bit and about his vocabulary and language skills and said she'd love to work with a child like Tyger.  I suppose there's a chance she does this with every child and parent to put them at ease and get them on side but I - of course - believe Tyger is a child genius so I'm sure she was genuine.

Pretty much the first thing to come up was my old friend 'eye contact'.  Until we saw the paediatrician back in April, every health care professional with whom I brought up ASD trotted out the familiar line of, 'Hmm...well he makes good eye contact...'  This meant it came as surprise to me when the paediatrician mentioned a lack of eye contact in her report.  The speech and language therapist (or 'SALT') picked up on the fact it took Tyger a looong time after entering the room to actually look at her face.  And whilst he did give eye contact after that, it was sporadic and fleeting.  I think of it like trying to force two magnets of the same polarity together.  He'll look but his gaze swings away pretty quickly and it's an effort.  I never thought about how much of an effort until I was trying to cut his fringe the other day (for any non-Brits reading this 'fringe' is what we call 'bangs').

Now, I've cut Tyger's fringe many times and it has always been a struggle.  He won't stay still and trying to get him to look at me so I can make sure it's at least vaguely straight (I think it's unrealistic to aim for poker straight and completely horizontal but I do try to avoid the stairs or ramp across the forehead look as if someone might need access from his ear on one side to his scalp on the other).  It just so happened, whilst I wielded hairdressing scissors and promised a biscuit when we were done, my parents were having a look at the SALT report.  So, I was going through everything the SALT had mentioned at the same time I finally managed to get Tyger to look at my forehead for maybe 15 seconds (it doesn't sound like much but sit and count out 15 seconds - that's a looong time for a three year old to sit still) and suddenly he looked shattered. Honestly, his eyelids drooped, his face went slack and I thought for a moment he might fall asleep there and then.  The revelation hit me: looking at people's faces and especially eye contact are physically draining for him.  I knew it was 'hard' but that's quite an abstract concept and I'd sort of assumed it was hard in the same way it's 'hard' for me to not eat Peanut M&Ms if they're just sitting there.  Realising it actually tired him out was a bit of an 'ah ha' moment (and made me feel a little guilty).

Come the end of the appointment she reassured me she 'saw what I saw' (i.e. ASD)., although said it was 'subtle'.  He'd give a doll a drink (with prompting) but was concerned there wasn't any milk in the cup.  He'd bath the doll (with more prompting and Tyger making excuses about being too busy) but was perturbed by the fact the doll's shoes wouldn't come off (they were painted on).  She thought it was interesting, since Tyger is so advanced with his language and vocabulary, to note the aspects of his language that are not advanced.  Namely, anything social.  He comes out with all sorts of adult sounding language and phrases but still uses 'he', 'she' and 'that' interchangeably.  I didn't disagree with her but Tyger's ASD is not so subtle when he screams for 20 minutes to the point where he makes himself throw up because I mentioned the guy who cut my parents' hedge is on holiday.

The next hospital appointment he had was about a cyst under his eye, which just won't fracking go away.  It's been there for months and is as persistent as Baby Bear when he's decided he wants some chocolate buttons (though, the cyst doesn't keep pointing to the basket with chocolate in and going, 'Ugh, ugh, ugh, ugh,' before crying and crying when I say 'no' then starting all over again - the cyst is just...there).  I hate these appointments because you're triaged as you come in so we tend to end up waiting about an hour before seeing a doctor.  And there are no toys in the waiting room.  And no hot drinks allowed.  And now Bear won't sit nicely in his buggy for the duration so there are TWO of them running around wreaking havoc.

However, Bear running around and wreaking havoc turned out to be a big bonus this time because he was kind enough to trip and sort of smack his forehead off the floor.  He screamed.  I mean, he really SCREAMED.  And he just kept on and on.  Doctors and nurses were trying to call patients in for their appointments but nobody could hear what they were saying.  It would have been horrible...if it wasn't for the fact it got us bumped to the top of the list!  Hooray for Baby Bear!  I am tempted to stick a foot out as Bear runs past at the next appointment...

Anyway, the doctor we saw after Bear's spectacular fall was fine...except he mentioned the hair.  I wrote at length about Tyger's long hair in my blog post Yes, I Bought My Son a Dress.  His hair's even longer now and the comments and confusion have in no way decreased.  The doctor just couldn't seem to help himself.

'I called you in and I was so confused.  I checked the notes here and it definitely said he's a boy.  I thought, 'What's going on here, then!?''

What is going on here?  More Goram sexist bullshit!  I am just astounded a doctor who must see hundreds of patients a week is so utterly baffled by a boy with long hair.  My hair is green at the moment, by the way.  Bright green.  I have not had a single comment from any stranger about my hair.  It is obviously in no way noteworthy (or they realise how rude it is to comment on a stranger's appearance when that stranger is an adult...) but a three year old boy with long hair??  That warrants comments pretty much every time we go out (which, granted, is not often).

There you go.  You can judge for yourself.

Then there was the most recent hospital appointment (seriously, the last two weeks have seen an inordinate number of trips to the hospital, which would be less of an inconvenience if Tyger didn't get car sickness...).  This one was the last assessment for Tyger before his diagnosis and was with a child psychologist.  I was expecting a similar drill to the last two appointments concerning Tyger's diagnosis (questions directed to me about how he behaves in various situations and some play with Tyger whilst observing him).  That's not what happened.  She informed me, as far as she was concerned, she should be there to help with behaviour and asked how she could help.

I was a little taken aback (where were the questions about how he interacted with people and how his diet is and what his interests are and how he reacts to change?...where were the questions for Tyger and getting him to perform certain tasks?).  I put forward some of the problems we're been having and pretty much everything I mentioned was met with, 'Well, all three-year-olds do that...'  I started to panic.  Did she think I was overreacting?  Did she think I'm just a terrible parent who struggles to cope with perfectly 'normal' preschooler behaviour?

This child pyschologist was the one who diagnosed my sister.  My mumcame out of that appointment completely nonplussed.  She didn't know whether my sister had been diagnosed, she didn't really have any idea what had happened.

The child psychologist openly says she suspects herself of being on the spectrum.  I think, perhaps, she doesn't see the point in telling parents their child has ASD when it was the parents who brought it up in the first place.

Whatever the reason, I was unnerved until we were leaving and she explained she'd tell the paediatrician her recommendation was an Asperger's diagnosis.

Then quickly ushered us out of the door!

Now it's a case of waiting...but I'm hopeful.

Linked with:

My Random Musings

Stopping at two

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Friday, 7 August 2015

Are Dinosaurs Bear's 'Voogers'?

There are a few little happenings and developments with the cubs that don't really fit in with any other blog post subject ideas I've had recently so I thought I'd round them all up and stick them together here in an update post.  However, I started writing about Bear and it went on much longer than I anticipated and with my brother and his girlfriend coming to visit tomorrow on my usual blog writing day, I don't think I'll get chance to write any more even if I wanted to.  So, this is Bear's update and - unless anything so amazing happens that I can't bring myself not to blog about it immediately - the next blog post will be Tyger's update.


'Baby' Bear is certainly no longer a baby!  He can climb.  He can really climb.  Bear is more like a...goat.  You know, like in those viral photos of goats in trees and on the sheer side of a dam?  Or he's like a squirrel or a monkey or...well, a bear, I guess.  Black bears, in particular, are very good climbers I think.  Yup, Baby Bear is like a bear!

He scales chairs to get onto the dining table, he climbs from the sofa to a coffee table to a shelf of CDs and if a chair is left along one side of the dining room it affords him opportunity to climb onto the kitchen work surface via a serving hatch between the two rooms.  He has even managed to open and empty the biscuit tin on one such excursion.  It's not quite a paw in beehive for honey but he and actual bears obviously also share a sweet tooth (I'm pretty sure real bears eat honey and it's not completely made up by A.A. Milne...pretty sure).  So, going to the toilet, making a cup of tea, putting away washing, anything involving leaving the living room/dining room/hall area Bear has access to is...hazardous.

If falling from a great height due to his own error in judgement was Baby Bear's only threat it wouldn't be too bad.  I mean, it would still be both annoying and stomach churningly alarming for me but he'd be unlikely to actually do himself too bad an injury.  There is another threat, though.  A loud, unpredictable, often violent threat.  If Bear is a bear, Tyger is a tiger.  Wild, unpredictable, prone to displays of intimidation (he screams in poor Bear's face a lot) but will attack if necessary (you know, if you class 'necessary' as he gets annoyed...or excited...or tired...or angry...upset...hungry...bored...).

A couple of weeks ago Bear climbed onto one of the dining chairs and stood playing at the table.  For once, he didn't climb onto the dining table so I left him to it (watching as I made lunch).  Then there was a tiger attack.  Tyger ran up to Bear and pushed the chair away.  Bear managed to grab the table and was left clinging on to it with his top half as his leg kicked the air like a cliffhanger in a TV show.  One of those literal cliff hangers with someone actually hanging off the edge of a cliff.  Luckily, at my scream, Mum ran to the rescue and grabbed Bear from the metre or so drop (which doesn't sound like much...okay, it isn't much but it's still taller than poor Baby Bear).  And this is the problem with Bear's bear-like climbing.  It would perhaps be bearable (ha...see what I did there?) if it weren't for Tyger grabbing at Bear, pulling away whatever he's climbing on, shouting at him and generally distracting him.  This extra risk makes Bear's climbing much more nerve wracking.

Climbing is not Bear's only recent achievement.  He has also started communicating much more.  I don't mean talking.  Bear does not really recognise the necessity of speech.  He is often able to do things for himself - if it involves retrieving something from somewhere high up, for instance - or he has started pointing and shouting.  Not shouting words because, as I said, he doesn't really do the whole speaking thing much, but shouting...noises.  Bear likes vowel sounds so he can do 'aaahhh' and 'oh' and 'uh' and makes these noise to get attention.  When he actually tries to form words he tends not to bother with consonants.  'Hello' becomes 'ah-oh' and 'thank you' is 'ah-oo' (he likes 'uh oh' for obvious reasons).  But he can make himself understood surprisingly well with the pointing and random noise technique.  He can also bring things to you, shake his head for 'no' and flap his hands for 'yes'.  Considering the sort of information he's generally trying to get across is 'I want a breadstick' or pass me Fergus' or 'put this toy in this other toy' and not...quantum mechanics, he gets by pretty well.

The other exciting news with Bear - although, this may only be relatable if you have a couple of children who have/possibly have ASD and even then I'm not convinced other people would be excited by it - is he might have his first 'special interest'!

Tyger's obsession is vacuum cleaners and Henry Hoover more specifically.

Of course, they're lined up as well...

I wanted to show off and add a photo of the Henry Hoover cake I made for Tyger for his third birthday because he was insistent he wanted a Henry 'Vooger' (what he called hoovers - though, alas, he can actually say 'hoover' now so I think I'll use 'vooger' as a term for an obsession because I've always thought it's so cute) rather than anything else and despite never doing anything more complicated than butter cream icing before I was quite proud of my efforts.  However, after finding a picture of said cake I remembered it has Tyger's real name on (in place of 'Henry') and that would sort of defeat the whole point of using pseudonyms...

Anyway, I wrote about how Tyger's obsession with vacuum cleaners began here in my 'What's Your Favourite Animal?' post.  Basically, he started out terrified of them and gradually became enthralled.  The reason I mention this is because something very similar seems to be happening with Bear.  The Wolf's lovely parents bought Tyger a pack of plastic dinosaurs that make a noise when you squeeze them when they visited recently.  The noise they make is pretty scary and loud and to start with Bear was terrified (possibly not helped by Tyger trying to shove all four dinosaurs in Bear's face whilst setting them all off making noise at the same time).  He stamped his feet and shook his head any time they were near and if someone (i.e. Tyger) sneaked up too close with one Bear threw it away and cried.

But he was still fascinated.  He kept pointing at the dinosaurs and even though he was still scared when anyone squeezed one, once the sound had stopped he'd grin.  And he started to get closer to them...  It wasn't as gradual as Tyger's conversion to hoovers but then I guess they're not as big or noisy.  I got Bear a dinosaur book and he loves pointing to the pictures and making roaring sounds.  He's not as taken with the soft dinosaur I bought him, which makes an even more terrifying sound when it's squeezed, but then he seems to think any fraternising with cuddly toys other than Fergus is some sort of betrayal.  No other soft toys are allowed.  In general, dinosaurs seem to be of great interest right now.

I wonder...will dinosaurs be Bear's voogers?

Linked with:

My Random Musings

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Saturday, 1 August 2015

Parenting is a Hundred Heartbreaks a Day

Tyger and Bear have a...tempestuous relationship - yeah, let's go with that - but more and more they are 'playing' together.  It's hard because Bear is only 16 months so is pretty limited in what he can do and Tyger is...Tyger.  His idea of playing is to roll on top of the other person, pile blankets on them or simply imitate everything they do whilst standing so close to them he's touching them.

So, it was quite sweet the other day when Tyger tried to play with Bear and was desperate for the two of them to sit down on a mat together.  He asked me to 'make' Bear sit with him so I had to explain yet again about Bear having autonomy over himself and what he does now.  Tyger preferred it, in many ways, when Bear was still a very young Baby Bear and could be plonked somewhere in the room with reasonable chance of him staying there.  After lots of encouragement and coaxing, Bear finally got down from the sofa and toddled over to Tyger.  Tyger was thrilled...until Bear swerved just as he got to Tyger and waddled over to me instead.

'Oh,' Tyger said deflated.

It was awful.  This was not a defining moment for Tyger.  It probably wasn't something he's even thought about since.  But the fact he was so eager to have Bear with him and so excited when Bear seemed to give assent but so disappointed when Bear blithely revoked that assent was horrible to watch.  Nobody wants to see their child rejected - even if it's by a sibling - and Tyger is so awkward with other people it just seems all the more poignant.

There you go.  I'm a neurotic mess of a mother who gets upset over her precious first born being a bit deflated by his brother wandering off.  I'm not sure if there are support groups for such things.

Then there was the Frozen incident recently.  Tyger loves Frozen.  I have mentioned how much Tyger loves Frozen before in my my first ever blog post (about potty training) and the one about his Elsa dress.  He's a sensitive soul, though, and has always been concerned about the fate of Anna and Elsa's parents.

For anyone who hasn't seen Frozen (seriously, who hasn't seen Frozen?), it's not exactly a big spoiler - especially given the general fate of parents in Disney films - to let you know the king and queen die at sea in a storm near the beginning of the film.  Don't feel too sad; they were pretty terrible parents anyway what with locking their daughter away from all human contact and telling her to repress any emotion she ever feels.

So, a few days ago we were watching Frozen again and Tyger asked more questions about Anna and Elsa's parents and what happened to them.  I explained about a thunder storm leading to the ship sinking but - shockingly - this did not help to alleviate Tyger's worries.  I didn't want to lie to him but it's hard to explain death to a three year old: especially one with ASD prone to obsessing over things and with very high levels of anxiety.  He uneasily pointed out we have thunder storms here so I reassured him as best I could.  This is when he said it.

Tyger: You're not sinking, are you?

Me: No.  There's no water here, anyway.

Tyger: (Quietly) I'll try to keep you safe.

That was heartbreaking.

I explained it wasn't for him to keep me safe, it was my job to keep him safe but he kept telling me he loved me for the rest of the film.

Yes, it was endearing and touching but it was also upsetting to see how anxious and earnest he was and I've noticed more 'I love you's since (which is nice but also a bit sad if he's being driven to say it by the fear I may up and drown in a storm at any moment!).

I don't know if I'm a super anxious and really sensitive parent or if all parents are like this.  I suspect most are to some degree, though perhaps not to the same extent as I'm describing.  I even feel heartbroken for Tyger when he asks for chocolate and gets upset when I say 'no'.  I know he's being unreasonable, his tantrum can be vaguely amusing and I know I'm doing the right thing by saying 'no' (he gets plenty - probably too much - in the way of treats before anyone thinks he's deprived and I don't just mean treats like rice cakes and raisins) but I still feel bad when he's disappointed because it's not a nice feeling.

As for Baby Bear, he has teething and nappy rash (although, not often) and an older brother who likes to use him for target practice but up until recently there wasn't much else to worry him.  Now, he's also starting to be able to express his desires (through pointing and grunting, he doesn't really do verbal language yet) so disappointment at not getting his way is also becoming a thing.  Today he had a 45 minute tantrum (full-on screaming, kicking, thrashing, throwing things and gouging anyone who came near him) because I took him away from the Wolf's computer.  At one point we thought he'd swallowed a key from the Wolf's keyboard and was in agonising pain, which was why he was reacting in such a way, but the key turned up on the floor.  Despite his complete overreaction and the awful noise we had to endure for three quarters of an hour, I felt bad for him.  Bear was obviously distressed.  He was exhausted when he finally calmed down.  It wasn't a nice experience for him, even if it was mostly self-inflicted.

And soon Baby Bear will have the same complex emotions and fears as Tyger.  Every hour will bring countless instances of anguish.

But they'll also bring joy and amusement.  Today Tyger drew a recognisable face for the first time and I think Bear said 'thank you' to Tyger completely unprompted.  Both were awesome!  Maybe the disproportionate wretchedness I feel at all their little disappointments is balanced out by the just as disproportionate elation I feel at their minuscule achievements.

Or maybe I'll have to up my antidepressant dosage.  You know, one or the other!

Linked with:

My Random Musings
A Cornish Mum

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