Oops I did it again!! 

After last years trip abroad I said I would NEVER do it again.  I’m a massive liar and I’ve caved to Reilly’s relentless persistence.

Every day for approx 6 months Reilly sits at the computer, flicking between 3 sites Thomson, Jet2 and Thomas Cook.  He taps the screen and then points to himself. We play where is the mountains, tree, beach, balcony, boat, hotel, pool, sun lounger, restaurant etc for longer than I would like. I’m pretty certain I could tell you where every free child place on Jet2 is available and on what dates. 
He packs a bag every morning.  Sometimes his school bag, sometimes a suitcase.  Towel, suntan lotion, floaters, rubber ring, quavers, sunglasses and a packet of biscuits.

So we are off on the last week of the school holidays to Paguera in Majorca and I’m already getting prepared.  I’ve emailed the hotel to establish whether the doors lock from the inside. I’ve analysed photos of the balcony.  I picked this hotel in particular because it is only 2 story buildings and has a splash park and a normal park.  I picked Majorca because of it’s shorter flight and transfer time. Not to mention the free child place that is seen on the weeks leading up to booking.  My mam and dad are coming again so they are back up for Ellis.  Ellis is still horrified at Reilly’s behaviour and literally crys when Reilly swaggers to the front of huge queues with no shits given like Connor McGregor entering the ring.  With my parents there it provides an escape from Reilly for Ellis when needed. I don’t have that option – at home he sticks to me like glue.  Away from home he sticks like superglue with some back up Velcro.

I’ll be taking my little cards which this year will be printed in English, Spanish and German as there are many Germans holidaying in Paguera.  They worked a treat last year and gave a great heads up for staff in the restaurant to explain why Reilly stood in the same spot for 30 minutes putting a stream of bread through the toaster.  Communication is key and that’s by any means necessary.  Once people know they tend to be understanding and accommodating and who doesn’t want that.

So the planner is up to show him how many days til the plane and he also knows he has to have his hair cut.  He really does. I love it long but it’s becoming harder and more upsetting for him to have it long.  He won’t let us, touch, brush, wash it etc.  He’s super handsome and will pull his new style off like a pro I’m sure.

#prayforchristine 😂 I found the Autism Passport hugely underwhelming at Newcastle Airport last year so fingers crossed it’s improved. Jet2 have a service now where they collect your cases at your hotel so you are arriving at the airport suitcase free with your boarding cards cutting out that horrendous queuing. That’s going to help massively enroute home. 

Autism Assistance Dog – Story so far …

As you all know I did a very public crowdfunding appeal last year to help fund an autism assistance dog for Reilly.  It would help make him feel more secure, safeguard him from running off and provide companionship.  Incredibly we raised the money we were advised we needed to within a week.  This is testament to the incredible support Reilly receives via the readers of this blog and our friends and family.

I feel I need to publish the timeline of how conversations have gone from October until now.  Because we raised the money very publicly I did then and I believe that Reilly’s dog is everybody’s business.

29th Sept We started this journey and sent to Appaws for Autism and ask them to keep me in the loop as to what we do next.

12th October I ask if theres anything we should be doing as all the money has been raised and do we pay now or later.  we are advised by Appaws to simply put it in the bank.  In our case bank of Mam and Dad. I ask if we should come to Scotland and visit and i’m told to relax for now.

21st November I see some adorable Labradoodle pups on Appaws facebook page and ask if we they would be suitable for Reilly.  I am told to email their trainer Tina and arrange a visit.  I immediately email and ask if we can visit.

23rd November I get an email from the trainer Tina asking which dogs we are interested in and I say Penni & Persi. I’m excited as it actually looks like everything is moving ahead.

12th December Appaws ask if Ive heard from Tina.  I reply last contact was when I told her which dogs I wanted to visit.  Im told the reason I have not heard anything is because the dog lined up for Reilly Persi has actually died from a heart condition and that she was absolutely devastated.  Obviously im horrified but completely understand.

22nd January Im asked by Appaws if I am still interested in one of the pups.  Of course I am I am waiting for some guidance.  Im advised there is a dog called Pablo and I am asked to email Tina.

23rd January I email and offer my condolences over losing Persi and ask if we can come and visit Pablo.

24th January I’m advised by Appaws to email again which I do, with some specific information about Reilly.  What we would find helpful etc training wise.

30th January I email Appaws to tell them I’ve not heard anything back from trainer.  Appaws say they will message her and chase up.

9th February I receive a message asking if I can advance £1000 to Appaws to finish their building project in time for their grand opening.  I can see from their facebook page how hard they are working on building this new centre and discuss it with Shane.  I also mention that I still have not had any contact from the trainer and Appaws are genuinely shocked.  Appaws reply and say Tina will email ASAP.

9th February I get an email from the trainer stating that she has been super busy with Crufts etc and that she is organising dates for visits.

10th February We agree to forward £1000 and it will be deducted from any fees for Reilly’s dog.  We are emailed a receipt for it.

14th April message from Appaws to say Pablo had a health scare but he is fine and been cleared by the vet.

16th April email from Appaws to ask if they can come and do a home inspection.

20th April I have home inspection by Appaws which is all good. He texts trainer while he is here and doesnt get a reply.

21st April I email trainer and ask what is happening and can we come down and visit.  I write a blog and use a photo from Appaws website which I am contacted via messenger and asked to remove it as the people in the photograph have cut ties with Appaws.  This obviously strikes the fear of god into me and I push for further information.

There appears to be a massive lack of communication between the 2 groups which we have not been made aware of.  The dogs belong to trainer and not charity.   I am assured that we can in fact work with the trainer directly.  Reilly being our priority that is what we decided to do.

23rd April I get a message from Appaws saying we need a chat.

25th April I get an email from trainer to say that she is free the following Friday.  We book time off for us and the kids. Super excited that its moving on.

26th April email from trainer to give more details about Pablo and how the dog is the priority in their case which I am relieved to hear.  Obviously we want to work with people who care for their dogs and have their best interests at heart.

5th May we drive to Manchester to meet Pablo. We love him.  Reilly typically unimpressed but that is to be expected after a 3 hour drive.  Ellis adores Pablo and instantly bonds with him. We meet Gregg from Merseyside Dogs Home who is lovely and gives us more information about Pablo as Pablo lives with him.  We spend considerable time there and I feel hopeful that this is right for us.  We stay over in a hotel which Reilly absolutely hates.  We are urged to come away and think carefully about getting a support dog and I feel happy that these people have the dogs best interests at heart.

I exchange various messages with Gregg over the next few days and he is incredibly well informed about the whole process as he explains how they fit in with the trainer and how it all works.  I am offered 3rd June and 18th June for home visit.  I state that I am at weddings on both of those days and am in Portugal the weekend in between.

15th May I email trainer to say we definitely want to proceed with Pablo.  Ellis does nothing but talk about him and is smitten.

30th May email to ask if we are coming that weekend and I explain we are at a wedding as previously stated.

6th June I am emailed by trainer to ask if Gregg is coming that weekend and I say no because I am in Portugal then and want to be present when Pablo visits.  I haven’t heard anything else from Gregg.  I don’t hear anything again.

17th June Email from trainer are you coming on Friday at 10am to Manchester as we need to build a relationship with Reilly and Pablo.

20th June I respond with the fact that it is my Grandads funeral so not possible but that I am free the weekend after.

21st June I receive email saying they need to see some commitment from us which upsets me greatly given the fact that we have been on this process now for 10 months!  She says we have been offered 4 training session to date and we haven’t been able to attend any.  This isn’t true we had been offered 2 and because of real life events weren’t able to attend.  These aren’t excuses this is the busy, chaotic, ordinary life of an autism family.

21st June I explain that it is not possible to be so rigid with the training day and time.  Shane works more than full time to keep a roof over our heads, he sometimes works night shifts and coming home at the time we would be expected to start driving down there is just not possible.  Could we have a different day or time like over the weekend.  Reilly and Ellis cannot be constantly pulled from school as it upsets Reilly’s routine and he will always be horrific after a 3 hour drive hence the need for different days and times.

24th June an email from trainer to establish which dates.  If we can’t come up with a solution they are considering withdrawing Pablo from us as time is passing Pablo by.  Ellis talks about nothing but getting Pablo.  He would be devastated if Pablo didn’t come to us. Shane takes over at this point.  Im stressed to bits and my anxiety through the roof.

28th June Shane emails:

We are very keen to find a solution to getting the bonding sessions underway and having Pablo settled with us in our family home; please don’t think for a moment we are not committed to this as it couldn’t be further from the truth.
The Friday 10am sessions aren’t ideal even with prior notice, I work long hours and the kids are at school; whilst I can book holidays mostly it isn’t always possible.
Everything with Reilly is routine, he wakes at set times goes through the same routine of breakfast, washed, clothes on etc; the routine keeps him comfortable and safe if this makes sense?
The last visit leaving early set him up for a bad day and he never settled tbf until he was home, this in turn causes Ellis upset and ourselves additional stress.
I realise you and Gregg have your own lives and commitments but would it at all be possible to do the sessions on a Saturday or Sunday early afternoon your end? If it’s additional cost it will be at our expense.
If yourself and Gregg would like to come up here to do the home visit and stay a few days to do some intensive training/bonding we will arrange local pet friendly accommodation locally again at our cost.

Reilly is coming on hugely with interacting with our sister in laws dog, he actively wants to go to the house to feed her and play with her; I will get some video footage for you.
I think this improvement in his confidence is down to it’s an environment he’s comfortable in and familiarity with the dog.

Please consult with Gregg and let me know your thoughts and offer any thoughts you have; like I stated we are keen to find a suitable way forward so we can both get Pablo settled and Reillys quality of life improved.

29th June We receive an email from the trainer saying that its great that Reilly is loving my sister in laws dog Mio and that it is probably down to him being in a comfortable familiar environment. Relations between the trainer and APPAWS has now ended.

Time is passing Pablo by and the biggest hurdle is the geographical distance between ourselves, in an ideal world  Pablo would be taken to my sister in laws home where Reilly is familiar in meeting a dog then build on this.

I understand your restrictions and demands by Reilly’s routine and doing the best for him, I agree Reilly visiting us is problematic and not a good idea for Reilly or the dog.
That brings me back to time, for us to visit you to undertake the work involved, takes us away from the care of our other dogs and children, it would result in a disproportionate amount of time, something we haven’t got. Taking into account all of the varying factors I don’t think this is going to work out and suggest that you try and find a provider nearer to your home that will be able to give you the level of support that you require.

29th June Shane replies:

I find this disappointing to say the least; I feel I have offered really flexible solutions to a difficult situation. This would of enhanced Reilly’s life no end and Pablo would of been in an environment he would of loved, we’ve always been open and you’d of been welcome to visit anytime you were near to put your mind at rest the situation and home life suited all.

There are no specific autism awareness trainers in our area, so we are pretty much back to square one.
I understand from your point of view you want perfection for your dogs and their new homes but I think you may struggle with autism related families unless they are very local to you.

I wish you, Gregg and Pablo all the very best in the future it was a pleasure meeting you all and it’s just a real shame no compromise could be found.

Shane talks to APPAWS and they return our £1000 immediately.
So here we are. Frustrated, without a dog or a trainer.  I feel incredibly let down.   Back to square one.  If I am honest everyone I dealt with along the way I liked. I think this is a clear lack of communication between Manchester and Scotland.  I see people committed to helping people with autism in Scotland and people committed to the welfare of dogs in Manchester and then there’s us in Newcastle and we just don’t fit the picture.  Ellis is absolutely devastated!

I apologise for the long drawn out blog post, trust me it could be longer but feel it is incredibly important that you all know why it is dragging on.  I am asked weekly when Reilly is getting his dog.

So current day we have taken the decision to buy a pup asap, a Labradoodle, reputable contacts appreciated and work with a local trainer, we have already made contact with a trainer in Northumberland so will keep you updated as to how that progresses. There are few and far between autism support dog trainers in the UK and there is a glaringly obvious need for more in our area.

We still have every penny raised for Reilly’s dog.

Can we achieve autism support dog status  when we get our new pup? Damn right we can – my priority first and foremost is my son and if a support dog will help we  will make sure it happens.

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The Life of Reilly audition

I forgot there was a teacher training day today.  I opened Reilly’s diary on Thursday to the words enjoy your long weekend, eh? what? NO I NEED him in school. I have been looking forward to this day for weeks.  

Today was audition day for the play The Life of Reilly.  A new character will join the cast playing the part of Reilly’s friend.  We decided immediately after the last show that we should be looking to cast actually autistic actors. It just makes sense, a no brainer.

After seeing Ellis out the door this morning on a trip to High Borrans I managed to get into Newcastle with seconds to spare while grandad Ken took Reilly on a bus trip to Whitley Bay (only 2 meltdowns but epic ones 😩).

The actors were asked to read Reilly’s initial monologue.  Not easy as he’s talking to a pretend therapist at the back of the auditorium.   They were awesome.  Obviously I can’t say too much as there are still people to audition but I was genuinely blown away.

There is some amazing talent out there, I’d be nervous as hell to walk out in front of strangers and perform, in fact I don’t think I could do it.  To see these people transform with booming voices, accents and gestures is outstanding.   Let’s not forget some autistic people often walk hand in hand with anxiety daily, this was no small task. 

I felt really proud today.  I loved listening to everyone’s stories about how and why they became interested in acting  and can see Alphabetically Autistic and Red Diamond Theatre working on some amazing projects in the future.  More opportunities for these amazing people xx

You can buy tickets for The Life of Reilly at Northern Stage. 21st September. 

Please come along and support this amazing production.  

Flying solo

I’m back from my few days away with the girls!  I had the best time I can’t even put it in to words.  I felt safe and relaxed those two concoctions don’t come around very often.

When I received Reilly’s autism diagnosis I thought these times were over.  As an established anxiety sufferer and now the added worries for Reilly I never thought I would have the courage to fly solo.   I lost my Grandad on the morning I flew.  He has been ill for a long time and pleaded regularly  to help him on his way.  A horrific time for my Mam and her brothers.  I felt I should stay and support my Mam who was having absolutely none of it.

I arrived at the airport with the girls armed with diazepam, just in case.  I didn’t take one and I was just fine.  I have laughed more in three days than I have in three years.  The only time I wavered was when Shane posted photographs to social media of Reilly.  I felt a pang of guilt that I should be there, I wanted to have my nose buried in his hair but a serious word with myself and reminding myself of the fact that he is going to be there doing exactly the same things when I get home and all was right again.  I have a husband and friends who do not have that chance – a reality check is all that is needed about how lucky I am.

The time I spent lounging on the sun lounger soaking up the sun is as beneficial as any medication I’ve ever taken.  It’s essential in fact.

I was ‘evicted’ from the villa on Wednesday and sat pondering in the airport waiting to board the flight.  Could I have stayed the extra couple of days with the girls?  Damn right I could have.  Reilly was absolutely fine with his Dad.  He seems to just switch modes when the other is not around.  I often wonder what his concept of time is, I still don’t have the answer but what I do know is our reunion was not the teary, Reilly running opened armed to his Mam who scoops him up for a cuddle.  I surprised him by shouting through the trees in the park,  he stopped for a second and did a quick glance, I jumped out and he changed direction and went up the nearest climbing frame.  I was absolutely gutted ha.

Next year the full duration with the girls abroad?  You bet it will be.  Let’s have some of the old Christine back, loosen those control reins a little and realise the world still turns without me.

RIP Grandad Billy

RIP Aunty Jane who absolutely loved this blog and Reilly’s adventures

xx

 

 

I’m packed! 

Yesterday his face lit up like firework. To his absolute joy two fully grown swans and 8 cygnets were literally on our doorstep.  When I came back from the loo Reilly was sliding full slices of bread, half a loaf to be exact through the letterbox for them.  If the door had been unlocked he’d have let them in.  He’s funny – won’t touch a banana but happy to give Daddy Swan a cuddle. Not on my watch. I was mentally preparing myself to pass him out the window to his escort so we didn’t have to open the door.  

They came again today and I had to close my blinds so he couldn’t see them, I’ve gone through 2 loaves of Warbutons toastie in a day and a half.

Anyway I go to Portugal tomorrow im currently sat writing this with my special feet treatment packs on my feet as to not alarm our Portuguese hosts and on the off chance I bump into Ronaldo and he drops his fork under my table in Nando’s.


I am equal parts bricking it and excited.  I can’t wait but also can’t wait to get back.  The fact that I’ve packed my case proves my probiotics are still working. I can’t take them with me so let’s see how that pans out. I’m so scared that something might happen and he NEEDS me. I don’t know what his perception of time is like but he has pretty much slept beside me every night for nearly 6 years so surely he’ll notice? I really hope he doesn’t.

Shane cannot wait to get rid of me. Can’t think why.

Wish me luck. I need a break desperately and it can’t come soon enough.xx 

Reilly’s voice 

What a revolting week. I would normally add a witty comment in here about the kids being off and driving me insane but we’ve got bigger fish to fry.  I promised myself that my blog would never be a political outlet – I would undoubtedly lose readers  but this blog is about life with Reilly and how autism affects us and unfortunately the upcoming election affects me greatly so I’ll keep it short.

In the past, years ago I really didn’t give a flying f@ck who was Prime Minister.  I had a job, a house, a car and  I was ok.  was ok.  This continued on into having Alex 20 years ago. No problems with his schooling, he went to the school I wanted him to and life just tootled along. Nothing to see here.

My life doesn’t tootle anymore.  Things that have come easy in the past now do not.

We all know my greatest fear in life is not being here for my children, everyone has that fear right? But now imagine your child may never talk, may never work, may never live independently? How greater does that fear become?  It’s unbearable, uncomfortable and keeps me awake every night.

Now let’s add to this the odds that Reilly will suffer from depression, anxiety and get bullied are stacked against him.  He will need support, I will support him but he may need more than that and what if I am not here? The mental health services are in crisis and waiting lists are too long.  Does this fill me with hope for the future, certainly not.  Privatisation of the health services and cuts to services for people with additional needs terrifies me so much so that I want to gather my family up and hide on a utopian island with no news.  Nothing, just us and some coconuts and maybe the Stanley Road album.

We, like the rest of the nation watched in horror as last nights events unfolded in London.  I continued to watch on through tired eyes in bed, feeling sick with thoughts racing about our upcoming trip to London.  I attended a fundraiser just a few hours later with armed police in attendance.  What on earth is the answer? I just don’t have it. So much more I could say…

So the upcoming election for each of us holds hope in many different avenues.  Don’t waste that vote. Look at the manifestos – look what works for you and yours but don’t do nothing.

On the 8th June I will be the voice of Reilly until he finds his own.

Absolute Shambles

I’ve seen in the media this week (link to Carrie Grant) that there have been discussions in South West London to no longer accept referrals for assessment and diagnosis of Autism Spectrum Disorders.  Even typing that sentence feels wrong.

I cannot get my head around this.  The only children who could be referred are those with an additional mental health condition the likes of ADHD or depression.

Reilly is autistic.  He isn’t ADHD, he isn’t depressed.  Where would that leave us.  No referral, no diagnosis, no help, no support, no special school place.

It has to be financial, I cannot think of any other reason but I can assure you that the knock on affect for these families will have severe repercussions.  We all know that early intervention is crucial.  You need to open doors quickly and access whatever help is available.  Reilly simply couldn’t be shoe horned into a mainstream school, I knew that before he attended his afternoon visit to nursery that they couldn’t handle him and I was right.

Reilly didn’t want to sit nice on the carpet with his milk in a carton that he couldn’t bare to touch and listen to stories. He wanted to be in playing with trains but thats only allowed if you have a band on and theres only three bands allowed at any time in each area, he didn’t get it.  He didn’t fit and I wasn’t going to make him.  And oh lord he’s still in nappies!!

We were lucky enough to have a Sure-Start nursery a bus ride away where the staff were amazing and helped me so much.  They were an emotional crutch to me at times. Times when I couldn’t leave him, times when it took me 2 hours to get him there instead of 20 minutes. Times when Id had 2 hours sleep and happy times when he ate the garlic bread.

Guess what happened to that Sure-Start Nursery?  It was closed.

This coincided with Reilly needing to start big school.  No diagnosis, no special school and an entitlement to 5 hours per week support.  I say again 5 hours per week.

With Reilly’s diagnosis he went to panel for them to decide where and how Reilly should be educated.  There were zero spaces available anywhere with any type of specialist provision available.  He would have to go into mainstream school to “prove a point” that he couldn’t remain there.  Imagine using your child to prove a point to get them the right education they are legally entitled to.  The poor teacher who chased Reilly for one week around the school between 1.30 and 3.15 must have been near a breakdown at the end of it.  We proved a point and then threatened action with the council.  Tadaaaa we were offered a place at an excellent school for Reilly, not the right school according to all of our professionals but better for him than mainstream at this point.  Reilly spent a year there and came on leaps and bounds he was then moved to his current school.  It’s exceptional.  It’s right for him and us.

Would he be here without a diagnosis?  Absolutely not.  Would I have had that breakdown that I teatered on the edge of so often – I can guarantee it.

So is it about money? Is this the start of privatisation?  There can’t be any other reason.  How many people can afford to go private for a diagnosis?  It’s absolutely terrifying.  Will it roll out further?

Our lives are hard enough, we need support just to lead semi normal lives.

Mental health services are being cut left, right and centre. Mental health problems on the rise and I can assure you it will get worse if these plans go ahead.