Just keep Swimming

1 more sleep. 1 more sleep if i’m lucky.

Last night Reilly went to bed and was asleep at 9.  He woke up at 12am like Aurora had just been kissed.  He was up until 6 this morning when he decided to have himself a little snooze thankfully.  Its rare these days thats its as bad as this.

I decided I was going to make sure he was tired tonight so decided I would brave the swimming pool. A quick wafting of his swimming trunks between Reilly and the Mac screen and Reilly was fastening himself into his car seat as quick as a flash.

I NEVER go to the swimming baths:

  • a) I am fat
  • b) I am a shade paler than Winterfell
  • c) I hate getting splashed.
  • d) Reilly having a meltdown and the thought of me legging it after him in a bathing costume turns my stomach (and the poor others who witness it).

Given my nearly 2 stone weight loss though I thought suck it up you are 45 years old and noone gives a flyer what you look like and off I went. Ellis decided he was coming too. Strength in numbers.

I drove off with my brood thinking I was great, one of them activity mams I despise normally, jealousy is a terrible thing. The mere sight of a fun filled family social media snap, usually fake can sometimes send my resting bitch face into a state of unrest.

Ellis splashed me at every given opportunity and I floated around like Red October looking for people I knew to get out before I would make my exit and head to the showers. Surfacing from the warmth of the baby pool on look out like a massive periscope.

I had another reason for going swimming. It was a secret covert mission to wash Reillys hair! I cannot do it at home. I cannot watch my boy ram his face into the tiles and scratch himself when attempting to wash his hair. Can’t do it. Is it the smell, taste, feeling, sensation? We don’t know but what we do know is it is much simpler at the pool. There’s a quick kick off but no meltdown and it passes quickly. Success! Look at me parenting!

All in all it was a huge success sounds ridiculous to some that I am celebrating a trip to the pool but honestly some of our trips out would make your toes curl.

Back home and out on his bike with Tarly for some night swinging at the park.

Surely he’ll sleep? He’s never stopped today. Tomorrow morning will be awful. First day back for Reilly is that bad his dad has taken the day off to help. It’s not that he hates school he just wants to be with me. This past 2 weeks you’ll be lucky if there’s been a day where Reilly hasn’t been attached to my cheek. He loves the holidays, loves staying in his pjs and watching films. He’s rekindled his love for Charlie and Lola which I’m very happy about and we’ve watched hundreds of episodes. Tomorrow is going to be tough for the little man. I expect uniform down the toilet at first opportunity.

Myself and Shane will be going out for lunch as we have spent zero time together over the Christmas holidays and a bit of almost grown up conversation is much needed.

Good Luck to all those with a fight on their hands in the morning. Cheers to the first uninterrupted cuppa x

My Sons not Rainman

I came across this book while browsing twitter one night while lying in bed worrying about the future as you do, well I do.  I sometimes lie for hours scrolling through #autistic #autism #meltdowns making myself feel better with other peoples frustrations or jubilations.

I liked the title immediately.  If you have an autistic child you will be familiar with the fact that a lot of people expect your child to have a remarkable magic talent.  “What’s his thing?” “I bet he’s good with numbers” are the common ones.

Not all autistic people are Savant’s. Savant’s are people who have incredible abilities usually falling into a few different categories to name a few:

Musical abilities – being able to playback perfectly a piece of music after hearing it only once.

Artistic abilities – Stephen Wiltshire a prime example his ability to remember skylines and reproduce them in drawings is breathtaking.

Calendar Calculation – being able to produce the day of a week a date falls on thousands of years away.

Memory – Reilly has an awesome memory and shocked us all when he started to google  bus registration numbers and we realised they were actual buses he had been on or seen weeks even months before – but I don’t think he’s Raymond Babbitt. If he is I’ll meet you at Aspers!

The book written by comedian John Williams really struck a chord with me.  I related to everything he said but its so funny too.  My favourite part is his disability top trumps and that SEN parents can be arseholes too.  I don’t want to spoil it for you.  But I am guilty as charged – If your child had 4 hours sleep mine had 3.  I also lol’d at the school shoes and too short tracksuit bottoms I see this week in, week out.

It’s honest, it’s sad and its thoroughly enjoyable.  ‘The Boy’ as he is loving referred to has an amazing relationship with his father despite the many challenges they face over relationships, schools, behaviour, disability etc.

You can click on the link below for more information.  Myself and my Mam read this book on holiday and now my husband is half way through and loving it and sometimes not loving the stark similarities in our lives.  I thoroughly recommend it.

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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Shoeless, bra-less 100 metre sprint 

Yesterday Reilly’s taxi to school was late.  He’d been up since 4.30 and as always was ready sitting by the window watching for the bus.  5 minutes earlier Alex (thing 1) was leaving for work and asked if he could take my key, yes no problem don’t lock it  I’m not going anywhere and Reilly’s taxi will be here any minute.

This was a massive error on my part that will never be repeated. It left me wide open for escape attempts and general naughtiness. Was like an episode of 24 but we’ll call it 1 and a bit.

07.55    Reilly has taken up seat on the pouffe with remaining piece pain au chocolat from breakfast.

08.00    I’m wondering if there’s a lot of traffic today.

08.05.    Starting to get a bit edgey.  Reilly trying to take off shoes.

08.10     Debating whether to ring in a missing persons report for taxi driver.

08.15.     Attempt a sneaky wee in downstairs toilet right beside the front door.  Eyes of the  prize and he’s off.  So am I mid dribble.

08.17.     Retrieve Reilly from house round the corners driveway where he’s stood tracing their car reg with his finger.  Thank god their door was locked.

8.20.       Back in the house and bribing Reilly away from the door with kitkats, kinder eggs, paw patrol and jigsaws, he’s having none of it and we have a standoff. He wins.

08.30.     Get phone from upstairs takes approx 4 seconds and he’s out.  I give chase shoeless, bra-less in mismatched budgies died pyjamas. Give a jaunty wave and stupid face that says haha look how funny we are while dying inside to the neighbours pulling out in car as I try keeping my bottoms up, my bristols in and keep up with Reilly.  So cold I can hardly breathe and defo have frostbite on my stone imprinted feet.

08.43     Text husband and declare state of emergency.

08.45      Husband texts back to say taxi stuck on A19 but is coming and to keep the faith.

08.55        I admit defeat put my coat on over my pyjamas. I have few luxuries in life, one is staying in pyjamas as long as physically possible and I excel at it.

08.56        Counting and hopping on and off paving stones around the drive willing the taxi to appear.

09.05.      I’m so cold I fear I might cry.

09.10.        Reilly runs away again with another attempt to get in his favourite house around the corner.

09.15.         I have 2 hands and a cheek pressed on window looking for the taxi.

09.20.        I hear the rumble of the minibus, hurrah! Bustle Reilly out the door, wave and leg it back inside.

09.25.         Hairdryer blasting on my feet, cup of tea and some lemon curd on toast and I’m wondering what all the fuss was about.

We managed to avoid a full blown meltdown. He likes to do things his way in the morning and this threw a spanner in the works but thankfully no need for Kiefer.

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Parents evening

Tonight we went to Benton Dene School for Reilly’s first parent’s evening.  I absolutely love Reilly’s school and his teachers.  It’s so important to trust them. When you have a non verbal child you must be 1000% confident he’s happy and I’m absolutely certain he is.

It’s intriguing to hear what their thoughts are on Reilly.  How on day one he pushed a chair to the bench, got on it, opened the cupboard and helped himself to some cereal and a bowl, made it and sat down at the desk to eat it.  Just proves he not just fiercely independent at home but he is at school too.

He’s communicating with his PECS cards really well and I got to see a video of him sitting in their small dining room where approximately 10 have their lunch together.  Not once did he require help and tucked into his dinner no problems, nor flipping anyones plate which I was surprised to see.

All in all we are all really hopeful that Reilly will talk.  Academically he’s bang on and learning is not a problem.  We spoke to his speech  therapist and occupational therapist who are just getting to know Reilly and all his unique ways and we’ll work together with them on communication.

I left with a little bit of a spring in my step feeling the future is bright for the little man.  I need to bottle this feeling and have a swig everytime I feel a bit grim 🙂

Here’s a video of Reilly on holiday for no other reason that he’s just plain adorable, just doing his own thing xx

Tea & sympathy

Today I had to go to Reilly’s school for a catch up with his teacher and other parents of children new to Benton Dene School.  I wasn’t sure I could actually keep my eyes open to get there after he was awake between 1am – 6.30am Monday night followed by an up at 4am last night.  I look like a dementor.

Aim of this afternoon was to drink tea and talk to other parents.  One thing for sure when you put a room full of parents of autistic children together theres not going to be any awkward silences that’s for sure.  Looking around the room it was a sea of nodding in agreement as we shared similar stories of meltdowns, no sleep and the rest of the issues that keep us on our toes.

Reilly as I expected is doing extremely well.  He is communicating brilliantly with his pecs boards and super comfortable in his new surroundings.  His transition from Beacon Hill to Benton Dene has been nowhere near as traumatic as I anticipated.  Luckily (I’ve had no replies to any of my issues) for North Tyneside Council he also loves his new transport and waits for the mini bus at the window every morning.

Obviously when it came to my time to speak I hardly came up for air, Alphabetically Autistic, The Life of Reilly blog & play, Really Reilly, grandparents sessions (lots of extremely good feedback re this) and the likes.

Just hammered home the fact that what we are doing is necessary and needed and made me proud to know I had a part in it.  I opted not to bring Reilly home with me and to leave him to come home on the school transport.  30 minutes to myself, alone you say, I’ll take that.

We have been to collect our registration certificate for Alphabetically Autistic today too so all round a productive and satisfying day.  Praying for sleep x

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The nightmare before school

Normally on back to school eve I can be heard singing “It’s the most wonderful time of the year”.  Not tonight however.  I’m a mixed bag of emotions.  First day back at school for me this year is huge.  Not only is Reilly changing schools he also changes drivers and escort.  For a little fella with autism this is massive.

I feel scared, nervous, excited, free, miserable, happy and tired all in one.  I won’t sleep tonight even if Reilly does.  There will be thousands of us the same.  We’ve had the PECS out showing Reilly back to school, the new uniform is out, his new coat has been casually hanging about the house so he’s used to it ready for tomorrow.  School shoes exactly the same as last terms but 1 size bigger.  School bag exactly the same. Thomas and Friends.

He hasn’t met his driver or escort to say i’m unhappy about this is a massive understatement.  Will he get in the car tomorrow? who knows. My email has gone off to the council none the less and will probably turn into a blog post all of it’s own as school transport is a huge issue for me.  Every driver and escort should be introduced to the parents and child before first day of school.  Do they have autism awareness and experience?  I don’t know but if I’m not happy tomorrow he won’t be getting in.

Will he hate it? Will he cope?  I don’t know he can’t talk. Imagine that.

Just awful.  I remember feeling like this on his first day of school last year and it worked out just fine so i’m keeping everything crossed he transitions well.  I’m prepared for a rollercoaster regardless.

If you see a new school ‘Mombie’ tomorrow, you’ll recognise them look like death through lasck of sleep, black eyes, hair unbrushed, constantly checking their phone and paying no attention whatsoever to anything you have to say. Spare them a thought, go easy on them at work, make them a cuppa and be kind.  It’s harder than you think.

And good luck to all the fabulous SEN teachers and assistants who do such a tremendous job.

I wrote a little poem to lighten my mood after having a good cry at The Good Dinosaur tonight.  I know – pathetic.

#prayforchristine

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Happy Days

Moving on from my horrific night of panic the other night which was caused I think by me overthinking and underestimating  Reilly’s ability to cope with change.  I imagined our visit to his new school to be filled with starfishes on the tarmac, kicking school doors, biting teachers (he’s never bitten so thats ridiculous) and escape attempts.  Instead it was fabulous first of all taking off his shoes and putting on a pair of angry bird wellies he found at the door, playing with train track and painting Thomas toys, actual toys not drawings.  He didn’t want to leave! Queue the massive sigh of relief.

Not one to build up my hopes I prepared for a showdown this morning when I dropped him off to spend the morning on his own at Benton Dene.  Not a squeak from him, he didn’t even turn around as he was led off with his new classmates. I cannot express how happy this made me feel.  Where was the Reilly that wants me to carry him around on a piggy back 24/7?, don’t forget I am Hodor he is attached at most times, my neighbours will confirm lol.

I see some independence growing in my little man and I like it.  Picked him up took him to his current school Beacon Hill and happy days I’m back home.  No meltdowns.  Result!

I have so much love for both of these schools and we are incredibly lucky to have them  in North Tyneside.  I’m sure they must give patience out when studying in the special needs field.  I have never seen anyone stressed or outwardly under pressure with these fabulous little humans while in school.  Just fills me with confidence and praise in the work that they do.  We may not make it apparent but the second the kids are in school we breathe a sigh of relief that we know they are cared for and learning in superb environments and this is due to the people at grassroots level in those schools.  It is some respite time to refocus and plan for the day ahead and it actually saves my sanity.  I may start a petition for only 2 week summer holidays..Who’s with me? hahaha.

ps I must say I am completely shocked at how many people are reading this blog who are teachers, tutors and parents, literally every person I spoke to.  Might need a disclaimer signing in the near future 😉

 

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Really Reilly !

As I said in my last blog post there is a play coming this year The Life of Reilly but what I didn’t tell you is there is an offshoot.  A very special offshoot.

Really Reilly is a play that will be performed in schools and produced by Red Diamond Theatre’s Alison Stanley  the writer of The Life of Reilly.

Really Reilly will be a fun and informative way in educating the children about why some children are different to others, hence the phrase Really Reilly !?.  I know when Thing 2’s friends are around I love to listen to them asking questions about Reilly and hearing Thing 2’s answers.

  • Why’s he never got any clothes on?
  • Why have I got to go outside to cough?
  • Why is there a lock on the inside of your bedroom door?  (stops Reilly trashing his things and provides a bit of peace when required)
  • Why can’t he talk?
  • Whys he wearing headphones?
  • Why won’t he play with us?

This list is endless and they are genuinely very interested and tend to be much more kinder and patient with him once they are informed.  Wouldn’t it be great if we could do this for the masses?   I don’t see why we can’t.

I’ll keep you updated over the next week about Really Reilly but it could be coming to a school near you soon.  Awareness is key to gaining acceptance.

If you are a school and would like more information regarding Really Reilly please email alphaautistic@gmail.com.

 

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Is my little non verbal gerbil finding his squeak?

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The finishing line is in sight!  I dread the school holidays I even feel extra anxious as it draws closer not because the kids are at home (well maybe a bit, ok a lot) its the absolute carnage it causes when its time to go back.

I’ve been an absolute cop out this week and Reilly hasn’t been anywhere other than the park, there are times when I just can’t put myself into the inevitable situations that comes with going out and about with Reilly, sometimes  I just don’t have the strength. Probably a lot to do with the antibiotics i’ve been taking I’ve turned into a bit of a hermit.

Going a bit stir crazy I left Reilly with Thing 1 yesterday to nip to Aldi for some essentials, I sneaked out using all my stealthy tricks and managed to get away undetected, even remembered my bags for life.  I hadn’t even got past the pain au chocolats and my phone was ringing to come back.  Fail.

But this week so far has been highly enjoyable.  I don’t know why we put so much pressure on ourselves to get out and about when really you’d rather stick rusty forks in your eyes than negotiate the bus timetables and the judgey public.  It’s been really chilled out building tracks and tents, being a horsey, watching films which is pretty rare.  We have watched Cars 2 four times today, 5 times yesterday and always from the same starting point 8 minutes in. I love it when he watched films as he sits with his cheek pressed against mine, its snuggly and its loving and I don’t have to move for 1 hour 😉 Reilly has been high fiving his brother and even gave him a kiss so far so good.

My favourite part of this week is I have noticed how much more vocal Reilly has been.  Not with words obviously but with noises.  He came and got me today and led me to a fly in the living room and continuously said what I know to be shoo.  He is counting more with sounds so instead of 1,2,3 he is making nasal noises but at the right tune and my Mam and Dad swear he said ‘in there’ when bullying my Mam into her bedroom so he could sit with my Dad by himself for his nutella on toast. He’s done this before though where he has shown a little progress then its just stopped so I try not to get too excited, if I had a pound for every time i’ve said to Shane do you think this is it? do you think his speech is coming?  I’m so desperate for it I would give absolutely anything.

So late start to today as Reilly was up at 2am and didn’t go back to sleep until nearly 8am.  He appeared in my room wearing his blow up armbands for his holidays, lights on and attempting to jump from my window sill onto the bed.  Not his greatest moment but wish Id got a video :).

Roll on Monday.

Nickname this week :  Tyrion

Cups smashed: 4

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