What a Carry On!

What a comedic (almost) 24hrs. Whose ultra crap idea was it to put the boys together in the same bedroom for company? Oh yeah that was me. So who ended up sorting William out when he started his midnight screeching? Daddy of course! :D

I knew it was a long shot but Alex is really enjoying Williams company now as he gets older, so it seemed ideal to give them a chance of sharing a room. Previously we have moved William into his own room due to night wakenings, but these are more easily managed. She says. There's not much talking between the boys, it's pretty much one way conversation from Alex but interaction has really improved. Alex is as mad as a box of frogs, and William loves it.

William seemed to settle after the midnight banshee call, and little was heard of him till 6am, where he had come to my room with a bog roll saying"Fingers! Fingers!". I looked at him with beady tired eyes and saw his hands full of bogies. After a quick wipe with bog roll it wasn't shifting so I sent him off to wash hands which he can do of a fashion.He is very fond of nose mining, but hey aren't we all??!

No?....

Oh just me and William then... ahem moving on....

Off he toddles to find some k'nex to play with. A short while later Alex pops in with "Mum you've got to look outside". He is fond of fake poo jokes so I tell him he's in trouble if he gets me out of bed for a plastic dump on the landing.

Poo it was... but not plastic! Bearing in mind our pooch has been poorly with sick and squits, this was not really a surprise. What WAS a surprise was that miraculously William had avoided stepping in it. If it had been outside then he would happily trample in it. Woo hoo! Some evidence of thought process- no shoes, therefore no standing in sh*t. We were massively impressed.

You know where this is heading don't you?

As we rose from bed the cogs whirred....I checked the snotty bog roll.... was it snot on Williams hand? 

Sniff....

Short answer - No.

Long answer.... "Jesus Christ he's had his hands in dog sh*t, what if she's got worms, Jesus Christ has he eaten it? what's that brown on his face? check where he's touched, is it on his k'nex, frigging hell its on the taps! Clean his hands for Christs sake!"

Of course this might have still happened if he'd not switched rooms but it seemed the perfect end to a bad judgement.

The boys are still together and will remain so unless Alex shows any signs of detriment. The plan is to turn the spare room into a sensory zone over time. We have been awarded a grant from Family Fund to set us off which is ace, but unfortunately sensory stuff is bloody expensive, and even a slight association with 'Special Needs' bumps prices up no end.

Providing the dog manages to control her bowels tonight might be better. William is already in bed at 6.45pm watching IgglePiggle with his drugs. Not recreational ones. Fingers crossed for a better night!

"Don't stand in the sh*t Wottingers!"

Go the **** to sleep!

Evening all!

William is on a minimum-sleep cycle at the moment, so what a perfect moment to talk about it. Sleep deprivation sucks. Not for him, he's having a whale of a time chatting shite to himself at 3am. Personally I'm a light sleeper, so once I'm awake, I'm stuffed till I reach exhaustion. Many a time I've been up reading about serial killers on Wikipedia after a night session with William. I don't know if I should be worried about myself or not.

Anyway, William has melatonin each night to settle him, it's supposed to relax him but sometimes I think I'd be better off taking it instead. I've often thought about slipping some whisky in his juice but best not. I haven't done that in case anyone has picked up the phone to call social services.

When you have a new baby, the exhaustion of night feeding is pretty unbearable at times. But often after a full belly of milk baby will nod off again for a bit and you kinda get used to a cycle, with the hope that one day they will sleep through. William is now 4 and still wakes most nights. Sometimes its for comfort of Mum or Dad, sometimes its to play or to
babble about Upsy Daisy or count numbers. He has a tendency to pi$$ about, tossing and turning and saying "telly on". I will be the first to admit that on the odd occasion I have said "William, its 3 o'clock in the pissing morning, FFS go to sleep".  He can't be left alone as he starts banging furniture or screaming, which wakes the whole house, including the dust mites, so you're in it for the duration whether that be 20 minutes or 2 hours.

A fellow mummy posted a youtube video on Facebook a while back and I watched it over and over again with Daddy, snorting with laughter. Julie, you saved my sanity with this, and even on our worst nights we can sing this to ourselves and smile. A bit. With blurred vision and matchsticks.

Here it is (warning explicit lyrics)
http://youtu.be/XYsTXkoQwEM

As I type I have William in bed with me faffing around and far from tired. Its 9.44pm and after a late night on the beer yesterday, I could do with catching up on rest. Daddy says "Come on, bedtime" and William rolls over to me saying "to Mum" and being all cute. Little bugger. It's going to be a long night.

I'm hoping that sleep will improve one day, but I know many families who go through a similar thing, and of course many children who don't have autism fanny about at night times. Williams brother is a great sleeper, but tends to be up early, about 6am even on weekends.

Tonights prediction is that William will pass out about 11pm, I'll still be reading about criminals till midnight, when William will be up again to play Igglepiggle games. Alex will be up at 6, Mum and Dad will be grumpy, copious coffee is consumed and the cycle starts again.

Go the **** to sleep Wottingers!

Swings and schools.

The end of the Easter holidays approaches for us. 'Hooray',  I hear the boys' Daddy cry! With it brought a kinda sad day, as today we received the official offer of Williams reception place at mainstream school. I remember the nerves of waiting for his brothers placement a few years ago, waking in the night and nervously checking my emails in a cold sweat, followed by the huge grin of knowing that Alex got in our first choice of school, one of the best performing in the area, 'St.Philips C.E Primary'.

Williams offer is also at St.Philips, but he won't be going there. He will be at New Greenhall, a Special School that he is already attending on an observation place and is more suited to his needs. I admit I find that a bit gut-wrenching that he won't be going to mainstream, although we feel it is the right decision (and not one taken lightly). Alex doesn't seem to mind, but I bet somewhere there will be disappointment that his brother won't be there with him. I find it annoying that we had to apply for a mainstream school in the first place, feels like a kick in the teeth to be honest. But I guess not every child who needs an SEN place will get it.

I am really happy for those friends whose children have been offered a place at the St.Philips, but there is pang of sadness, maybe jealousy, that it our family whose path has been altered. I guess we all have our difficulties no matter who we are though, and ours just happens to be autism. And there could be worse things in life.

We went to the park this morning, bright and early before people start to arrive. This is best because freedom and space is important to William. It also means we are more relaxed as parents, as we're not concerned about William bashing someone's face in with a swing. We met up with 2 more lovely families, whose boys are in Williams class. The children didn't play "together", but it was lovely to watch them running, squealing and even bickering at times. It's hard to describe, but when you're with families that "get it", its an amazing feeling. Alex also got to play with a friend his own age, and that's so important, as William doesn't really know how to play with his brother yet. Or maybe he chooses not too. Alex talks gibberish a lot of the time 😀

Later in the day I read through William's most recent Educational Psychology report sipping my 15th coffee of the day, and I see how far he has come in the last 6 months, coinciding with starting Special Needs Nursery. Usually these kind of reports are upsetting as they bring home just how difficult things are for them,  but this time I didn't feel upset, but positive. This time it wasn't "oh poor William look how delayed he is". I was looking at how much he had achieved, and how he had changed. I see he is strong willed, defiant to adults (ace!) and in the psychologists words "happy and independent". I saw how carefree he was in the park, running wild, squealing and shouting, making noise and bashing his face into the gate like any other child. I did tell him to stop messing with the gate but he chose that moment to have one of his defiant moods ;)

At this point it twigged. It really didn't matter that William wasn't going to his brothers school. Its a brill school, but it's not about being the best, its about potential. The best mainstream school in the world may not be able to unlock Williams potential. But New Greenhall School may just do that. I'm excited about the coming year, just as excited as I was about Alex starting school.

As a parent of a child with additional needs it's easy to get bogged down with the negatives, but it doesn't have to be like that. William has as much right as any other child in this world. Just because he doesn't speak with words doesn't mean he has nothing to say. Just because he doesn't look right at something doesn't mean he is not taking it in.

This is WILLIAM. A boy who hates vegetables and will close his eyes to see if they disappear. A boy who wants ice lollies for breakfast. A boy who will hide in the shed when he doesn't want to come in. A boy who loves fart noises and burping. His autism may affect him in some ways,  but it makes him different, not less.

Bring on Reception!
X

A bloody awesome week!

As the last day of my Easter holiday approaches I look back on a great week at home with my family. To be honest, I used to find time at home stressful, usually due to bawling screeching unhappy William, this being at its worst when the boys dad was working. This time was different and we've had an amazing break and some fabulous input from William that gives us more clues to his personality.

William is at his happiest in the great outdoors. He's recently discovered the wonders of a scooter, and has been zooming around the garden and beyond with great skill, far more confident than his brother at that age. He has shown some sense of awareness on the scooter that he doesn't show when walking. He seems to know that bumping into a wall will probably not be a good idea and will jump off the scooter like a pro. Yet walking in front of cars he will do quite merrily if not grabbed. He walks confidently pushing his scooter, with care and ease. Yet without it he will run and walk erratically and his mind is everywhere other than where it should be. It's frustrating but I'm pleased that we have found a possible window into his personality using wheels, and maybe an aid to his behaviour problems.

William is also a water baby, and the glorious weather has meant we could have the paddling pool out - cue William whipping his pants off before its even been filled! He loves to splash and squeal with his brother, and more often than not everyone will be soaked, much to his amusement.

Alex sometimes finds holidays a bit hard. Most families with a 4 and 6 year old would be expecting the kids to amuse themselves to a point. But because William doesn't really talk, that is difficult for Alex. They still squabble like any other siblings, but they can't play games together due to the high level of adult support William needs in order to understand things. He often needs things repeating many many times before its understood, and that doesn't guarantee he will retain it. But we manage, and Alex is understanding how he can help William by being a good role model.

This week we've had William actively seeking hugs and will say "cuddles". Tonight as I put him to bed we played some Igglepiggle games then I told him it was time for sleep. He said "cuddles" and "mwah", giving me a little 'kiss' (his version is a mild headbutt but its the right body part at least). I told him I loved him and he said "shush shush" which was awesome 😊 I think he understands its to do with the cuddles and its a bit mumsy.

Lesson learned this week is that we need to go with the flow when it comes to activities. A farm visit we had was of no interest to William where the animals were concerned, but the big-assed bouncy slide of doom was. We find it easier to have another adult with us on our journeys, so William always has 1 to 1 and mum and dad can spend valuable time with Alex doing stuff he likes. Alex is an animal lover and was in his element holding baby birds and bunnies.

We're also getting regular loving interaction from William which is fabulous and long overdue for us. A far cry from earlier days when he shunned our presence.

A good week. No. A bloody AWESOME week!

World Autism Awareness Day!

April 2nd 2015 - Its World Autism Awareness Day! A perfect day to post. 

Today people have been wearing blue, or onesies, or buildings have been lit up, to raise awareness of autism and the charities that support families with autism. Awareness should be everyday, its understanding that needs to improve, but I quite like having a set day that really raises the profile and perhaps gets people asking about it. Recent figures from the National Autistic Society suggest that 1 in every 100 people has autism, but so few people know anything about it despite such a hefty figure.

I remember when I started noticing William was a "little bit different" and I got on to the internet looking for lists of development milestones in babies for hours on end to try and fight off the niggling feelings, and googling his specific problems -  "why doesn't my son respond to his name?", "child has stopped talking", "late walker", that kinda stuff. Again and again the term "development red flags" appeared in search results, and I really started thinking, "sh*t this is worrying. And there our journey began, and I knew what was going to be the outcome.

Some of the basic lookout signs for Autism. 

William often plays "inappropriately" with toys, he loves to spin cars and will put them upside down and watch the wheels go round. He can't do imaginative play yet. Many a time I've sat with his plastic tea set pretending the tea and cake is scrumptious (sound effects and all) and he just walks off thinking I'm a nut job.

He's very sensitive to some lights, particularly halogens and strip lights. He's distressed at public toilets, possibly due to the lighting but we've not figured that one out properly yet.  

He has no awareness of danger, particularly when it comes to road safety, and has taken the hands of strangers in play centres to help him onto equipment. Not so bad at a playcentre, but if that happens in the street that's a big worry. 

He is very passive, hence needing a high level of adult input to help him learn. He really would sit eating bananas all day if he could. And that gives him the farts. And we don't want that. Trust me.....

I make no secret of Williams autism, but unfortunately so few people really have any inkling of the difficulties that people with autism face. Since his diagnosis, I have often thought about the people in my neighbourhood that I grew up thinking were "oddballs" or were labelled as "local weirdos". Looking back and now having my own experience of learning difficulties, its entirely plausible that these people, usually men, had similar problems, maybe they too had autism, and that makes me feel bad. I guess we will all have been guilty of making fun of these people at one time as children. One day William might well be that "local weirdo" and I can't bear the thought of someone making fun of him, calling him names or purposely doing things to distress him. You see a lot of things in the news about this stuff and as a parent I know I can't protect him forever, but hopefully I can find a support network that will be able to help. 

Alex is well aware of William's autism, but  treats him no differently than any other child, apart from making sure he simplifies his speech so William can grasp the basics of what he's saying. It's quite cute. In the mornings, Alex will come and ask William if he wants to go downstairs with him, then Alex will put the TV on and they will play for a while as I sup my strong coffee after 3 hours sleep. 

http://www.wikihow.com/Explain-Autism-to-People

This is a pretty good link with some useful info. I don't like the word "autistic", it sounds like William is sick or suffering something, and the article does go on about "abnormal" behaviours, which is a bit drastic, but the general info is pretty good and I urge you all to have a read and see what we go through. I must say though, that William does not do any of the dramatic facial expressions seen in this article ha ha. 

Soon I will be getting my butt in gear and sorting out the formatting of this blog, I'm a bit rusty on the HTML stuff and have little free time to get info onto my page, but after having a few compliments about the blog my head is swelling a bit and I think i'd better make a bit more effort before you all get bored. Perhaps when I've had a good nights sleep. Ha ha! Never happen. Wonder why ;)