The Life of Reilly and Tarly

Tarly is settling in brilliantly! We all absolutely adore him. Reilly is already starting to be more vocal around Tarly, attempting to say his name and usually shouting no when he’s hanging off his pyjama bottoms.

Things I have discovered since Tarly came to stay:

  1. Puppies wee a lot.
  2. I don’t like the smell of dogs poo.
  3. I feel like a pin cushion off his little needley teeth.
  4. Dog stuff is expensive.
  5. I ❤️ shopping for dog stuff anyway.
  6. I ❤️ the way he welcomes you even though you’ve just left the room for 5 minutes.
  7. I ❤️ how excited he gets the second we wake up.
  8. I ❤️ smelling the top of his head.
  9. I ❤️ the way Reilly interacts with him.
  10. I ❤️ that he sleeps at the bottom of Reilly’s feet.
  11. I ❤️ watching him try and jump up the first stair.
  12. I ❤️ that I can practically feel stress fleeing my body when I stroke him.
  13. I ❤️ to watch him playing with Ellis.
  14. I ❤️ this little lad as part of our family.

I have a really good feeling about Reilly & Tarly and cannot wait to see how it unfolds. I’ve started doing some training this week with Tarly so I can add that to my cv as well as nurse, negotiator, cleaner, teacher, house wifey, researcher, diplomat, advocate etc.

I’ll try keep you updated with their progress as often as possible. My new fave pastime is watching these two instead of the telly,

All you need is love … and a dog.

When we were away last week I was starting to lose my faith in humans.  We were judged and glared at relentlessly on holiday with Reilly. It’s hurtful, not as hurtful as it was in the early days as now I just tend to get angry rather than upset.  Saving grace was we got back on Wednesday and on the Saturday we had booked at appointment in Carlisle with Perfect Pooches to see a Labradoodle pup for Reilly.

As most people will be aware we’ve wanted a support dog for Reilly for a long time and been messed about, you can fill in the blanks here -> Autism Assistance Dog – Story so far … 

We drove to Carlisle on Saturday morning with Reilly (they are relocating to Kent soon).  We had given him warning of where we were going so he was prepared when we arrived. We arrived at exactly the same time as a lovely family from Glasgow and were met by Anna the breeder at the gates of a massive old farmhouse.

We were expecting Reilly to a) refuse to go in b) go in and come back out within 4 seconds c) go in break something and leave within 10 seconds.  To our massive surprise he actually sat down, a huge effort given there is 5 strangers and the family dogs in a strange environment.  Reilly’s first ever experience with a dog was an experience I will never forget, unspoken friendship – I blogged about it at One boy and his dog.

21432691_801058516742250_5122253009056943279_n
Tarly’s Bro’s

Anna brought 3 of the most adorable puppies i’ve ever seen.  One chocolate, one apricot and one black.  I wanted them all.  Reilly even used his finger to stroke their paws!  After much cuddling and oooing and aaahing we decided to go for the chunky chocolate fella, his name we already decided would be Tarly after my favourite Game of Thrones character Samwell Tarly – the ultimate friend and companion to Jon Snow, it’s just perfect and also because Reilly can say Tuh noises so it’s a good start.

I’ve been asked many times why a Labradoodle as a support dog and one of the main reasons is Ellis has allergies but also because they make outstanding service dogs.

Labradoodles were first bred  in Australia where in 1988 a breeder for the Royal Guide Dogs Associations of Australia deliberately crossed a Poodle and a Labrador with the intention of producing a litter with all of the temperament and trainability traits of the Lab, but with the non-shedding, low allergy coat of the Poodle.  Labradoodles are in common use in many countries of the world as assistance dogs, and of course, the same traits that make them a good pick as assistance dogs also makes them eminently suitable and popular as pets.

from pets4homes

Reilly did exceptionally well and managed around an hour.  We saw all the little pups in the puppy room which is inside the home.  Shane did cough at one point and he retreated behind me for 15 minutes as quiet as a mouse and shut himself down to recover.  We came home over the moon that we had found our little man and transferred the deposit across to Anna.

I woke up this morning to a text from Anna to say that she had been reading Reilly’s blog and the struggles we have had and she wanted to help.  Anna has offered to waive the complete fee for Tarly and would like us to use the money for the extensive training etc that Tarly will require for him to reach service dog standard, it’s an expensive business!

I wasn’t even out of bed and I was crying which was a new one for me.  I’m blown away that someone who does not know us would be willing to help like that.  More of this in this world would certainly make it a better one, faith restored in humanity.  Anna has a husband and four children herself and feels like she can help and really wants to – we will be forever grateful to her and Craig for showing such kindness.

Please be sure I will document every step of the journey with Reilly and Tarly from initial training right the way through to specialised training.  A journey I can’t wait to start.  It is scientifically proven that dogs are incredible companions for autistic people.  We want to take Tarly that step further as Reilly is a runner. Tarly will help keep him safe and provide much needed companionship but to be honest we are all a bit smitten and he’ll be much loved.

If you want to take a look at Anna and her perfect pooches and even tell them how awesome they are – please go to their facebook page Perfect Pooches Facebook.  

21371290_635795226620794_805338602639360968_n
Tarly Stephenson comes to his new home on 24th September.

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.

loonapix_1499689281919566842

 

 

The Rainbow Bridge

I have been trying to write this post since christmas and keep putting it off because well to be honest it’s not a nice one.

As you know we all achieved the amazing target for Reilly’s support dog in one week.  It was shared hundreds of times and we had donations from all over the world which enabled us to kickstart the journey of getting a companion for Reilly. For safety, for comfort, for friendship.

I fell in love with Perci when I first saw him in the photos and decided that he was the man for us.  Ellis thought he was the best thing he had ever seen and said he’d give up his christmas presents if we could get him by christmas eve.  Perci was in training, ringing bells to go outside, applying pressure etc he was perfect and we began looking at when we should start visits.

15037302_1467831793231152_4259180606829611487_n

Just before christmas we were informed that Persi had died.  Ironically he was born with a heart condition.  Even though we hadn’t met him yet we were looking at photographs of him and showing Reilly.  I was and still am really sad, Reilly doesn’t understand but Ellis  was really upset.  His trainer and the brilliant people at Appaws for Autism were and still are absolutely devastated.  His brother and sister Pablo & Peni have been checked over and are fine thankfully.

So there you have it I cant sprinkle glitter on it because it’s just awful.  We’ll now look at options again with Appaws for Autism and get cracking soon with making Reilly’s support dog a reality.

x

I made a thankyou video!!

This may put you off your lunch with my squeaky geordie tones and black eyes, what you see is what you get but felt like I needed to say thankyou and not just type it.

I cannot wait to get cracking and start writing about this experience and share it with you all.

The Life of Reilly and …………  ?

Much love to everybody

xx

I NEED TO ADD THIS VERY  IMPORTANT POINT.

I do lots of work as part of NE Hearts with Goals with the Pinpoint Recruitment Football League.  After talking to Ian Coates about the campaign they have donated a massive £500 to compensate for the Go Fund Me fee and the travelling expenses we will incur on the several trips back and forward to Scotland.  I’m stunned and I’m crying. AGAIN.  

 

 

 

 

Gratitude and positivity

I cannot express how grateful I am to everyone who has donated and shared Reilly’s appeal for his autism support dog.  So many times I have been asked to start a crowdfunder when discussing a support dog in the past and I just haven’t been able to do it.  Is it pride? Nope I’m pretty shameless most of the time.

What is it about me that doesn’t feel worthy of peoples donations?  I have no problems whatsoever badgering people for donations for our charity but then again that isn’t for me. I literally cringe tweeting Reilly’s campaign to strangers I feel like Oliver Twist in the workhouse.

I’m a good person.  I do good things and christ knows karma has got lost looking for me to repay it.

The fact of the matter is I am absolutely blown away by the comments and emails I have received.  It has boosted my confidence and my self esteem the last 2 days.  I have been shown such gratitude just for writing this blog I feel I must repay it with a big fat right back at you!

Gratitude and positivity is everything. I’m a positive person.  I always try to make sure my cup is half full not half empty.

When I lost my brother years back it would have been too easy to wallow and sink, which I did for a while, I teetered on the edge of the black hole of depression dipping my toe in it every single day, I once fell in upto my neck for a good while but managed to claw my way back. I still dip my toe in everyday by the way. Not sure that will ever stop.

After Neil’s sudden death I clung to the fact that there had to be a reason, why a well respected, fit young man could just be taken in the blink of an eye it was unfathomable.  Had to be reason, why us?  32 years of age is nothing.

Years later we found that reason.  Had we not lost my brother we would never have found my nephew’s hidden heart condition and in that realization a little bit of bitterness and angriness was chipped away just a little bit.

Without Neil’s death we would not have established the charity NE Hearts with Goals.  3 families have been saved from the heartbreak and desperation of losing a loved one.  We turned a wretched experience into a positive one for others and ourselves.  The gratitude we are shown by helping people is priceless, it’s like a medicine that keeps the angry bits at bay.   Gratitude & positivity two of life’s great staples. Practice them both and great things can happen.  Throw in some mindfulness and we are really talking.

I’ve had a lovely snippet of long awaited positivity tonight when Reilly independently went and picked up 2 of his PECS signs for bed at 7’o clock at presented them to me with a yawn.  He’s trying so hard to communicate with us and I felt a little chink of negativity drop off my shoulder as I tiptoed back out the room when he fell asleep.  He’ll probably be back up at 2am.

I have my fingers crossed that one day the weight I carry on my shoulders will get lighter, I try really hard to make it that way.  I have a beautiful family and a roof over my head and for that I am truly grateful.

In other news I forgot to send cakes to school for Macmillan and didn’t send a donation.  I never fail! 

Big thankyou everybody and much love.  Let’s smash this target for Reilly (and me).

Go Fund Me for Reilly’s Autism Support Dog

xx

gratitude-quote.jpg

Love needs no words just paws

How rude!  I put up a go fund me account for an autism service dog and then disappear for 24 hours!  Myself and Reilly have been KO’d by a sickness bug.  He’s better now and back at school but it still has me so my apologies.  This will explain his horrific behaviour of the last few days he just couldn’t tell us, breaks my heart!

As the blog approaches 40k views I feel confident that we may have made a difference in how others perceive autism but now I really need your help.  I am overwhelmed by the response to the fund so far not even 48 hours in and we are halfway there, I have had donations from all over the world, donations from people I have never met and donations from my oldest friends and I am truly grateful.

Why do we want a service dog for Reilly?

Basically I am terrified for his safety.  He bolts constantly, he’s a slippery as an eel and nearly impossible to keep hold of.  When he does runaway I have to carry him back as he will not walk and he’s getting so much bigger and heavier I really struggle.  Reilly will often act impulsively and has literally no fear of traffic etc. A service dog will keep him grounded/safe.  The dogs are trained to sit like an anchor if Reilly tries to flee.

One boy and his dog blog post was an incredible experience to watch the interaction between Reilly and his protector for the afternoon if anyone needs a reminder.

A service dog becomes a true companion who is always there for Reilly. Their  bond will help with self-esteem and many social situations that are currently very stressful for Reilly and us as a family.  I often cop out of some situations because I just don’t have the strength to deal with them.  I don’t want that.

With a service dog I see light at the end of the tunnel.  Some days when things are really bad like my last blog I cracked, I cried!. I can’t see it.  I wallow in a kind of self pitying state of oh my life is too hard I can’t even go to the shop for a loaf of bread because it will take 2 hours and Ill probably have to carry him back and I’m too tired etc etc.  The thoughts of having a service dog has given me a little bit of hope (god knows we all need some of that) that maybe we can cope and function better as a family with a furry friend in tow.

After reading up and doing some research I decided to give Carol & Niel a call from Appaws for Autism a charity based in Scotland to really understand how the whole process works.  After some long phone calls with them I am certain this is the best thing  we can do for Reilly.  He needs this.  We need this.

This video I have attached is so much like myself and Reilly. I cried watching it you probably will too but you can get a greater understanding of the comfort a service dog can bring.

If we reach the target I will blog every step of the way in hopes of helping others who need service dogs too.

If you can donate please do if you can’t no problem please share 🙂

 GO FUND ME – AUTISM SERVICE DOG FOR REILLY

 

Dogs & doughnuts

What a lovely day we’ve had !  As many of you know I am one half of the fabulous North East Hearts with Goals defibrillator charity and today we were invited along to the Great North Dog Walk at South Shields and Reilly was coming with me, god help us.

Excused from the 8 am set up and start (Reilly’s morning routine wouldn’t allow it) we got there for about 10 am.  There were already thousands of walkers and dogs there, Reilly took one look and bolted with Shane hot footing it behind him.  They came back 2.5 hours later after some chips at The Sand Dancer pub on the beach (the staff  were brilliant with him by the way and we will definately go back) and some paddling in the sea.  I had even managed single handedly to get my gazebo up and catch a few rays while they were gone

He came back like a new little boy. Dogs and people no longer an issue he donned his Krispy Kreme hat and looked cute as per usual which pulled in the customers.  We saw a dog wedding, yes really we did, he watched the dog training and he was brilliant.  I am genuinely shocked by his behaviour I was expecting meltdowns and runners.  I did have to run after a couple of times but nothing major.

IMG_9904.JPG

I talked to the charity Dogs for Good too about autism service dogs.  I’ve been thinking about this for a long time now and think it may be absolutely perfect for Reilly.  True friendship and a protector, an extra set of eyes on him it’s not like we don’t need them.  So that’s my homework for this week to learn as much as I can about autism service dogs and work out if it’s right for us and how on earth we pay for it.

IMG_9889.JPG

Excellent day all round.  Great North Dog Walk broke a world record today with around 28 thousand dogs registered to take part and we were over the moon to be part of it, great people and organisation.  Highly recommended for next year.

Cups smashed – zero

Meltdowns – zero

Proud of Reilly today.

IMG_9910.JPG