The long walk home

What an eventful afternoon!  I decided I would venture out with Reilly and Ellis to the skate park with the scooter, a football and a camera – just in case.  You never know what you are going to get when I’m out with these two and I hate to miss an opportunity.

I was a little bit nervous because i’m on day two of taking probiotics (see yesterdays blog) and can tell you that I would rather not stray too far from a public convenience of which there are none at the skate park and also because Reilly had to be given a suppository after school because he is still withholding his poo’s.  Had the potential to be a really shitty trip out, pardon the pun.  TMI?

Anyway sun was shining and within 1 minute of entering the skateboard this little dude called Billy who was there with his Dad comes to talk to me and tells me he recognises Reilly from school.  He doesn’t attend Reilly’s part of the school but he tells me he’s seen him around.  I tell him he’s autistic and he says ah yeah I know about that and then tells me he has friends who have special needs and it’s no biggy.

What a breath of fresh air man!  I talked to his dad about how fabulous the school is and how great it was to see such accepting attitudes.  Billy pushed him on the ‘thingy’ and they even high fived before Billy left.  My heart swelled a bit I’m not going to lie, more of this please.  I’m so happy I had my camera.

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Reilly took great pleasure in recreating the scene of me falling off the roundabout thing pictured above again and again.  I think he was winding me up and I love that too, more snippets of his character coming through.  If he could talk I know he’d be full of cheek I can see it.

We decided to make our way home after a few new ways of riding his scooter down the ramps.  IMG_1826.jpg

Time was getting on and we’d had no tea so straight home? No Reilly wants to walk the huge long way round.  Ellis deserts us for the quick route and Reilly decides not only is he not going the quick way he also isn’t riding his scooter and I should push him.  My phone dies just as I take out my phone to ask Shane to come and get us so 1 hour later I arrive at my Mam’s which is en-route.  We stop off for nutella on toast (Reilly) and then attempt the last 5 minute walk home. Nope not happening Reilly just lies on the pavement like a cement starfish.  Eventually my Dad rings Shane to come and collect us because it is impossible to move him the final 300 metres and it’s now 9 o’clock.

Nothings ever simple is it? Look at those beautiful photos though, he’s certainly worth it! (No photos of big bro Ellis were permitted to be used in this blog, I think its an age thing!)

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Do you think my child is autistic?

Crikey what a question but one I’ve been asked many times over the last month or so. I made a cake once but I’m not Mary Berry, please remember this.

Children with ASD don’t all have exactly the same symptoms and children that do have the same symptoms can differ in severity massively.

Reilly developed pretty typically sitting, crawling, walking all at the usual milestones.  He even had a few words at around 16 months then the words stopped pretty much overnight  around that time.

Reilly never babbled as a baby.  I remember saying to people he’s so silent. Literally not a sound.  He didn’t respond to his name either.  I could say Reilly 20 times and he wouldn’t turn his head once.  These were my biggest red flags.

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Since I started the blog I must have had a dozen ‘do you think my child has autism?’ questions.

I could never answer that! Ermmm I gotta run is my normal response.  What I would say is I have 2 neuro-typical (not autistic) children and they both displayed some of the signs listed as a nod to autistic behaviour.  Just because your child lines up his/her cars or trains (- all 3 of mine did this) doesn’t mean they will get a diagnosis.

It’s way more complicated and you must meet the 3 main criteria as shown in the chart.

 

So I thought I would do a comparison between the common signs and how Reilly measured up.

No babbling as a baby – Reilly was a silent as a mouse.

Poor eye contact – fleeting glances but rare to hold a gaze upto age 3.  He’s much better at it now.

No response to calling name – I could shout 20 times and he wouldn’t turn his head until turning 4.  Now he does most of the time.

Speech regression – Reilly did have a few words around 16 months and they stopped almost overnight.

Lack of empathy – I have seen Reilly only twice show concern for someone.  Once when a friend was upset and he spontaneously got on the chair behind her and gave her a cuddle.  The other was a lady sitting with her feet in the sand pit at Morpeth park, she looked sad and deep in thought.  He crossed the sand pit and stroked her hair.  Incredible to see for us.

Uninterested in making friends – We went on holiday with our friends when he was 2.  Not once did he initiate any type of play or even acknowledge that little H was there. Heartbreaking for us – for Reilly just another day at the office.  Alex my oldest used to stand on his own in the playground nearly every day dropping stones down the drain, he’s not autistic.

Doesn’t like cuddles – Couldn’t be further from the truth.  We nickname him the guppy as he comes at you with his lips in sucker mode and attaches to your cheek.  This is a red flag for many other children on the spectrum.

Spontaneous laughter – This used to freak me out but not now I love it. Sometimes he will burst into laughter at absolutely nothing.  Really big hearty fits of uncontrollable giggles.  They stop as quick as they start.

No pointing – Reilly does point at pretty much anything and everything – planes, the big yellow M of McDs, cats, birds, food. Many autistic children do not.

Repeats exactly what others say without understanding – I wish.  Not applicable as he doesn’t talk.

Doesn’t use toys or  objects in pretend play – yes he does but not until age 3.  He loves a play in a little kitchen or making car crashes with the cast of Cars 2.

May have a good  memory – exceptional he remembers roads etc and often surprises us.

Rocks, spins, walks on toes for a long time or flaps hands  – Reilly doesn’t do any of these.

Likes routines, order, and rituals; has difficulty with change – he likes things the same I only wish this applied to the mountains of cars and train tracks strewn all over my conservatory.

Obsessed with a few activities doing them repeatedly during the day – He loves trains they are pretty much his everything but  I feel this could apply to most small children.  Alex was obsessed with watching Winnie the Pooh, it’s all he did.  Ellis loved electricity pylons took us months to work out why he shouted four-four when we passed them.  It was from the old channel 4 adverts (go figure).

Plays with parts of toys instead of the whole toy – Nope!

Doesn’t seem to feel pain – He’s rock!  Rarely cries through anything physical.

Sensory issues – Reilly has big issues with certain noises, he also likes rough textures and loves cold.

Meltdowns – Not to be confused with tantrums just to get their own way.  I’ve seen plenty of tantrums over the  years from my oldest two and a meltdown blows it out the water.  A meltdown is relentless, its sometimes violent, can be dangerous and its extremely upsetting.

There are many more signs but if you really suspect your child, grandchild, etc has autism then you already know this as you’ve already googled it and watched the youtube videos.

TRUST YOUR PARENTAL INSTINCTS.

I absolutely knew Reilly was autistic well before his diagnosis.  When Ellis was very ill as a baby I knew there was something they were missing and I was right.  Don’t be fobbed off if you aren’t satisfied.

If you are concerned cold hard evidence and facts will help massively.  Take photographs, video behaviours that you are concerned about, keep a diary of what happens before, during and after meltdowns.

They sometimes have an awesome ability to behave in the exact opposite manner you’d expect them to when with the professionals that are monitoring your child thus making you out to be the biggest liar in liar town.

Be prepared time is everything the quicker everything is set in stone the quicker the right interventions can be made.  We got a diagnosis at 3 and were very lucky to get one so quickly.

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Strainspotting 

DISCIPLINE:  The practice of training people to obey rules or a code of behaviour, using punishment to correct disobedience.   

Sounds like a Barbara Woodhouse book without the walkies.

Discipline.  I’m not a fan of the word.  I’m a free spirit, the word obey sends shivers down my spine and I’ve never been one to conform but it’s a word I’ve found myself googling a lot lately because:

  1. I don’t know how to discipline my child.
  2. I don’t know whether he should be disciplined.
  3. I’m still struggling to establish what is naughty and what is aughty.
  4. I need to help Reilly with self-control.
  5. The strain of managing Reilly out and about is near impossible.

Can you imagine how hard it is to even attempt to make your child understand that their behaviour is wrong or upsetting when they don’t know how to read emotion, you can’t have a conversation about it and you have no idea whether they understand you or not? When a neurotypical child is naughty you discuss it, remove toys, use a naughty step, ground them, whatever your chosen method and whatever works for you.  I did this with Alex & Ellis, probably once or twice (I did say I was a soft touch).  I can’t do this with Reilly.
A lady coughed in McDonalds yesterday and Reilly stood staring straight at her then lurched at her and pulled her hair.  Thankfully when I explained that coughing is a trigger for Reilly to kick off she was brilliant.  I did my usual No Reilly, nice hands, don’t pull hair and ushered him off into the corner where he decided he would pull my hair too. It was disastrous.  I couldn’t remove him because he won’t walk and I can’t carry him now like I used to.

So question is on this occasion was he reacting to the cough as misophonia, an extreme emotional reaction to ordinary sounds.  Does he not like coughing and just showing his distaste. Was he just being naughty? I honestly don’t know but I find it exhausting.

My fear is as he grows bigger and stronger this behaviour is going to be extremely difficult to handle and I’m searching for ways to communicate behaviours and help him understand.

Is it fair to discipline or punish a child that doesn’t know they’ve done anything wrong? I don’t think so and until I know it’s certainly not for me but how the hell do I work that out.

I welcome any advice from parents of non verbal children particularly around Reilly’s age on how they distinguish between behaviours and what positive methods they use to calm these situations, particularly teaching self-control.  I can’t be the only one struggling with this.

 Naughty or sensory seeking? Who knows?  not me that’s for sure. 

Rubbish

What an absolute stinker  of a day!  Reilly’s behavior today has been just short of horrendous.  Up at 6am which was a bonus as we were allowed to play tents for an hour before actually having to come  downstairs.

The only peace today was when Reilly was eating an ice-cream, rest of the time he was like an angry whirlwind.

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Today he doesn’t want to be anyone’s friend.

  • He has hit Ellis numerous times for coughing.
  • pulled my hair for offering help with Finn McMissile.
  • Thrown my candles and hurricane jars off the shelves.
  • pulled a drainer full of dishes onto our waiting to be tiled kitchen floor which all smashed to smithereens and then proceeded to try and stand on the remains.
  • Flooded the bathroom floor as stupid me didn’t turn the stopcock off when the washer finished.
  • Had  a meltdown for 45 minutes because he couldn’t get the shed door open.
  • Pulled over my recycling bin in protest, scattering bottles everywhere (I don’t drink  by the way but that could change very soon) and sat on the top like the Lion King.
  • Took huge offence at me applying factor 50 plus suncream and covered himself in washing up liquid instead.
  • My dad took pity and ushered me and Shane out for something to eat while Reilly had a snooze but then HAD to phone for us to come back as he had the audacity to try and put on a giraffe instead of a lion.  (If that means nothing read back  on the lion and the giraffe post).
  • He was still crying when we got home to which Shane bundled him in the car with his bucket and spade to the beach.   and breathe.

Shane asked do you want to come with us?  Hang on I’ll just think about that for 0.025 seconds.  NO, no I don’t, drive away quickly and come back when all is calm (preferably 10.30pm and ready for bed 🙂 ).  I have said FFS far too many times today and not even under my breath and I’m no Sweary Mary.

Does that make me a bad mother?  Does it hell.  It’s ok to say your kids get right on your wick sometimes.  I get on his too.

In fact today everyone gets on my wick so here’s to a nicer tomorrow.

Just one of those days.

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Neighbours must think we are absolute scruffs!