Covid Christmas

So I’ve been very quiet of late. If you follow the Facebook Page you will know that i’m currently recovering from COVID. For months now COVID has and still does terrifies me. I’m the lady who loses sleep at the thought of getting a cough due to Reilly’s very severe phobia of coughing. As many of you will know we aren’t allowed to be unwell but COVID has literally had me on my knees.

I suppose my biggest observation and its something that I should do more often is presume confidence. For months i’ve said to Shane what if I get it, you get it, we get it. I’ve imagined every worst scenario there is to imagine, that part comes very easily to a catastrophiser such as myself. Back to presuming competence. I didn’t think Reilly could cope with me being unwell. I have no doubt the coughing has refreshed some already big issues he had but to be honest if I had somewhere to stay he would have kicked me out in a second and cracked on as per usual without a second thought I think but he’s still cracking on getting into mischief and he has managed.

I tested positive on 22nd December, lovely timing for Christmas and schools breaking up. What started as aches and pains became debilitating headaches and exhaustion like i’ve never experienced. The night before my test I slept on our sofa as I couldn’t get up the stairs. Then came the cough. I will take any amount of suffering to myself but to know with every hint of a cough Reilly would get so horribly physically upset so I shut myself away. I looked for ways of easing it for him and plugged in the hoover beside my bed along with the hairdryer. If I felt a bout coming on I would set them away and drown out some of the harsh noise for him downstairs. He’d still hear it though.

A positive to come from the experience is that Reilly has spent a lot of time with Shane, sleeping with him, playing, fighting, watching Attenborough. I now see how horrendous it is for Shane while I am the centre of the attention most of the time, Reilly would look in the room on me and tell me Car, Go NOW and want me out the house. The 10 days isolation for the household certainly was challenging. You try and explain to Reilly why he can’t get on the X8 bus see how far you get.

Christmas day was a washout. Reilly went through his presents like a piranha and retreated straight back up the stairs and with no taste, smell or appetite dinner was a write-off. Silly me decided I would be fit for New Years Eve and that we would rearrange for then. How wrong could I be. 9th January now and I’m still exhausted. My cough is subsiding at last and I have my appetite back so on the mend but by no means fixed. Reilly hasn’t been back to school yet, to be honest I don’t have the energy to get him ready and get him there but we have decided he will go back on Monday. His sleeping is OFF! For the last week while craving sleep Reilly has put in around 3 hours per night. Now that my cough is subsiding he doesn’t leave my side and by christ its so hard.

This got me thinking. How on earth are you coping with covid and an autistic child? I am lucky in that I have my friends, buddys etc who are available to go to the shops, pick up prescriptions, there for a chat but what about those without it. I cannot begin to imagine. I’m struggling. Thank god if Reilly did have it he wasn’t ill like I was. Everyday we have done the do you feel sore encouraging him to point and make us aware if there was something off.

If you need someone to talk to, help with shopping, appointments etc please get in tough about our buddy system via the facebook page. We have people who are already helping those in need and we have room to help more. My mental health has taken as much of a beasting as my physical health, its so important we try and keep it all in check.

So back to school on Monday. I’ve seen a lot of conflicting views on SEND schools and parents being deemed as irresponsible for sending their kids in. PLEASE don’t judge. Every single one of our kids are different and they all have their own needs which as parents we will go to the ends of the earth to fulfill.

Back to recovering and can’t wait to have a few hours alone next week to just breathe and sleep.

Lots of love and a healthy New Year to you all xx

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.




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.


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.