Andy continues to struggle at the moment. Agitated, pacing, withdrawn from interactions and activities. It’s heartbreaking to watch and incredibly tiring to keep supporting him. I would do anything, give everything to take away his troubles.
Accessing medical or psychiatric support is very, very difficult indeed nowadays, we are finding out. Put simply, already over stretched services are geared towards neuro -typical patients. Barriers are more than sensory, social or fear of the unknown however, as much as these are highly significant. No, the barriers are more structural and embedded in services where knowledge and understanding of autism is at best very patchy. Where understanding is limited medical staff are defensive and often dismissive. Finding pockets of autism friendly support is a lottery with poor odds.
Medical environments must be among the most challenging for autistic people and the process driven procedures leave little room for any flexibility in approach.
The Scottish Autism Strategy had among its initial 2 year goals the following statement.
“Access to services which understand and are able to meet the needs of people specifically related to their autism.”
This should have been in place around 2013/14 although how you would test this is anyone’s guess. These initial goals were of course conveniently ditched in favour of even broader outcomes, but surely no one could claim that this situation is even improving?
Medical care is a basic right under Article 24 of the UN Convention on the Rights of the Child. It categorically states “Every child has the right to the best possible health. Governments must provide good quality health care, “
If only this were true for autistic children. We live in hope.
Andy has been at respite this week and by all accounts had a great time. We had a wonderful rest with the other two in Crieff. I spent most of the week walking with Bailey in the woods and hills. It has certainly done me some good I feel.
We are now all back home and the house is quiet tonight, apart from the happy chuckles coming from Andy’s room, where he and Bailey are catching up and re establishing their close bond. These wonderful sounds quite simply make our house a happy home with Andy and Bailey’s deep bond right at the centre of it.
They have been interacting for the last hour or so and the process has really helped Andy transition back into his home after his time away. Wherever one goes the other is usually close behind. It’s nice to be home!
I have rarely been able to find time for writing recently due to the volume of work at Inspired by Autism but really wanted to share a beautiful and insightful interaction from last night. As most will know Andy now has a constant companion in our Labrador Bailey. Like every other facet of his life however his interactions with Bailey had reduced during the spring / summer months when he experienced a catatonic sensory breakdown. Thankfully we seemed to have moved on as the days turn autumnal.
Andy has no conventional speech although his verbalisations certainly have meaning and emotion in them. His happy contented sounds are for Jen and I probably the most uplifting sounds in our lives. Andy tends to limit these to one or two outbursts with people and then he tends to move on or away. He is so often constantly on the move!
Last night as I was attempting to get some sleep, Andy’s happy sounds could be heard. They appeared to be ongoing. A continuous mmmm and occasional aaaahhhhh!
The pitch of the sound rising and ending in whooping as he ran out of breath before starting the next. Andy was in his bedroom with Bailey and enjoying the dogs full attention and close proximity due to the large lump of homemade bread they were sharing.
Now I realise this might all sound a bit strange to those not in our position but this is Andy’s voice, his happy, contented child voice. It is a sound that for us is simply the best sound in our world!
What a week the first one of the school holidays turned out to be!
Given Andy’s recent difficulties with sensory processing we had already taken the decision not to risk him handling the planned family break to a caravan, and on balance this was probably the correct choice. It is always a case of balancing what we think he would enjoy versus the challenges a new environment will bring and we always give this much thought and consideration. It was however difficult to have to split up at what should be a family time. I went with Andy’s brother and sister for the first couple of days, leaving Jen at home with Andy. His hyperactivity through the night is continuing and it is definitely better managed at home.
On the Tuesday Jen and I had been invited to the Royal Garden Party in Edinburgh and with the help of Nuala, Andy’s Carer and my brother and his family, we were able to attend. It was great to have our role as Carers and the work of Inspired by Autism recognised in this way.
Jen then spent the remainder of the week at the caravan with our other two, while I went home and looked after Andy for a few days.
While Jen and the kids had a great time away, Andy and I had a happy and eventful couple of days. Among other things we went to the supermarket where Andy had a go on a mobility scooter before purchasing a rather large Birthday cake that he devoured with the help of our Labrador, Bailey! Again my sister and her husband visited to give me a few hours off and make sure I managed to cope with the lack of sleep.
It was great to all be united again at the weekend and despite all our travels and excitement of the week I felt most contented back in our garden , enjoying the sunshine with Andy and Bailey yesterday. We had all got through the practical and emotional challenges of the last week and that was a good feeling.
A year and a bit into our dog adventures as a family, I remain absolutely smitten with my love for our Labrador, Bailey. This weekend we have had my good friend Barry’s dog staying for a few nights. Skye is a beautiful wee Dalmatian cross and a sweeter wee dog you’d struggle to find.
As autism parents we have something of a stressful life and recently it has been particularly difficult for us all as Andy’s sensory processing differences continue to plague him.
For a while yesterday afternoon things really started to get to me. Like so many others, I too, am prone to bouts of anxiety and depression and yesterday the pressure and worry about Andy had me in a downward spiral. Experience teaches us though, that as George Harrison sang, all things must pass and this sentiment often helps me through this type of difficulty.
This morning I took Bailey and Skye for our usual walk in the woods behind our home. The sun streamed through the deep greens of the foliage and the woods and trails were quiet. I walked slowly but steadily and became engrossed in the surroundings and my canine companions, happily bounding around . My thoughts slowed and my anxieties dissipated as I stole an hour to myself with these beautiful dogs. My mood lifted and things seemed better as I returned to family life.
I don’t know how I managed without a dog for so long.
Andy’s period of hibernation from the world has largely continued this week. He has been mostly still confined to his room or on an odd occasion ventured downstairs.
The best it got was a late evening of hyperactivity where he made it into the garden. It was something of a false dawn ( or dusk !) however as he resorted to type the following day. It was a lovely sight though to see him burst into the garden and reconnect with the outside world with excited stims. (See pic!)
One of the problems seems to be the interaction between Andy’s various autistic traits. Like a domino effect the hyper sensitivity to bright light, that confines him to his darkened room, eventually becomes the routine. The need for repetition and rigidity then conspires to make this the ‘ norm’. The same way this rigidity can be utilised in a positive way to reinforce helpful routines around everyday activities e.g. Personal care, it can also trap Andy in less positive situations.
We will keep observing, supporting, loving and encouraging Andy, but it is taking time that the outside world often fails to understand and accept.
My autistic son Andy is 10 years old and is non verbal. My wife had been suggesting a dog in our home would have lots of benefits, not only for Andy but for the whole family. We also have a 12 year old son and a 9 year old daughter.
We investigated the possibility of a specially trained autism support dog but found this to be almost impossible to obtain here in Scotland. To be honest I had concerns about the whole idea. What if it didn’t work out? What about the mess and extra work? I am happy to admit that much of the time I was coming from the perspective of a stressed out and tired parent/ Carer. Each stage in supporting Andy had been a real challenge and we had just emerged from an ultimately successful but exhausting toilet training period.
Andy’s Carer had introduced Andy to her retriever and under her supervision he had made progress. From being initially very unsure he was now comfortable around this large dog and he and his Carer had started walking with the retriever. With great patience, Andy was making progress and the social and physical benefits to him were starting to emerge.
Despite my pessimism my wife began making plans and researching about which dog might be best for our family. Together with Andy’s Carer and her dog the transition work began. A large cuddly toy dog arrived in our home with a bed , food and water bowls and a lead. Andy’s Carer’s dog became a regular visitor and accompanied them on outings and walks.
Jenny’s research had pointed to a Labrador and she had located a couple of possibilities. Again, I moaned about more toilet training that a puppy would require and remained unsure generally.
A reputable breeder emerged and Jen was particularly keen due to the fact that the household was one with several young children in it. This she hoped would help the pups be used to having noisy and unpredictable young children around. Jenny discussed this with the mum in the breeder family and she was very receptive to this. She prompted her kids to stim around the puppy, explaining the purpose to her own kids.
Andy’s Carer continued the transition work , modelling life with a dog using the toy dog and of course her own retriever. Social stories with lots of pictures were used with Andy. A safe space for the dog to have his sleep was emphasised with Andy, using do not disturb pictorial signs.
Jen visited the breeder , met the pregnant bitch and had more discussions. We paid a deposit and it all became very real, especially for me. The doubts I harboured made a last ditch and concerted effort. Jen stood firm.
A healthy litter of half a dozen pups arrived and soon after Jen and Andy’s Carer went to visit. They selected our dog as one that appeared particularly relaxed about being handled. Oh and he was the cutest! (They were all cute ) The mum at the breeders agreed to keep our pup a week or so longer than the normal weaning period to fit in with our plans around a short break. This would then allow us a long and uninterrupted settling in period at home.
We visited the breeder’s home with Andy and the other kids, but Andy refused to get out of the car. This is not uncommon with Andy who struggles greatly with new places and situations. We decided not to force the issue in any way to avoid any negative feelings related to our new arrival.
We all redoubled our efforts in the final lead up period, talking about the new pup and using the cuddly toy dog to model the events that were to unfold. We settled on a name – Bailey- as Andy , though non verbal could produce a B sound. We also liked the name!
The day finally came and Bailey arrived. We did our best to contain the excitement and all behave as normally as possible. Bailey won our hearts immediately. He was gentle but playful. We attempted to let Andy and Bailey interact on their own terms – slowly, cautiously checking each other out. It was a slow burner but all positive and that was fine by us. Bailey was and still is a very quiet dog , who very rarely barks and this certainly helped. Andy’s habit of carrying finger food around with him also helped their early bonding! They began sharing space and experiences more and more.
Andy appeared to really enjoy this engagement that did not involve uncomfortable social intrusion like eye contact and overwhelming questions or demands. Bailey took the spotlight from Andy and that was very agreeable to him. Another major characteristic of their engagement was humour. Andy found Bailey very amusing and still does to this day. He is open to interactions with Bailey at all times, even when waking up. They hang out together during the day. They cuddle up in the evenings. They go in the car together. They are quite simply best friends.
Oh and guess what? Bailey has changed my life. I walk him most days and miss him when away at work. He sleeps on our bed and he makes our whole family complete.
An end to austerity that punishes the poor.
A new fit for purpose ferry for Dunoon.
World peace and respect for all peoples, faiths and cultures.
That more people experience the joy of sharing their life with a dog.
Frank’s Law to be adopted by the Scottish Government.
A recognition of the problems in mainstream school for disabled children.
More (some?) honesty, listening and integrity from our politicians, councillors and heads of service.
A wide spread social model approach to disability.
Greenock Morton to win the Scottish Cup.
Lots of new local councillors in Argyll.
Andy’s birthday was in May, a distant memory now that Autumn is almost upon us.
As always it was so hard to think of anything he would truly and definitely like for a present. In her usual thoughtful way Jenny attempted to buy him gifts that he might enjoy. Andy tends to go for small things he can carry about that tick some boxes for him in a sensory manner. The attachment is normally short lived and the object is either discarded, destroyed or removed if it is dangerous or becomes upsetting.
Some examples were kitchen implements – large spoons or spatulas, straws, watches, perfume bottles, pens, plastic bottles of sauce, condiment sachets in cafes and measuring tapes – the cloth ones and the retractable ones and a large variety of lids. Each object has a significance to his sensory processing – stimming with stick like objects, smell and taste of perfumes and food products, flapping with objects and running water over lids. Arranging condiment sachets on a table and then putting them back seems to show his need for sameness and repetitive actions. Interesting maybe but hardly birthday presents!
When Jen purchased a hammock swing in May for Andy’s birthday I had my doubts. He spent the summer on his conventional swing again ticking a regular sensory need that seems to calm him. Everyone else enjoyed the hammock right enough!
Clearly Andy was watching us all use the hammock but he merely laughed when we encouraged him to have a go. Well this afternoon four months after his birthday he finally found his way on to the hammock. It takes Andy time to assimilate anything new. His preference usually being for sameness and routine. In his own time however he finally took the step to try the hammock and clearly found it to his liking.
Jenny’s knowledge of Andy’s way of being and what he enjoys paid off once again. We just required to be patient.
Jen and I are as hard working and committed as the next carers but we are only human and get tired and worn out sometimes. The constant ups and downs, the demands of Andy’s care needs and all the usual stresses and strains of family life can leave us feeling flat and worn out sometimes. Even with us both pulling our weight and help from family, carers need help and support. The school holidays can be particularly difficult and often we feel greatly stretched at this time of year. We are feeling it just now even with hard won supports like respite, sibling and young carer support, shared care and the support of Andy’s wonderful carer Nuala.
I spend a lot of time helping other carers to find out about and access these types of supports. They are essential to the survival of many families in similar circumstances. They are not perks or privileges but rather the crucial support that allows carers to do what they do best while saving the public purse millions of pounds each year.
Many thanks to Sense Scotland respite and sibling support services, Crossroad’s Young Carer support, Shared carers , our Nuala and family for helping us manage.