Today I was privileged to witness a partner displaying that deep commitment and love that characterises the role filled by so many Carers every day. It is a humbling and life affirming experience and such is the emotion and warmth it generates, I always find it deeply touching.
This display of selflessness happens in many different circumstances but the degree and intensity of course varies.
For so many Carers, in so many almost impossible and never ending situations, it is the reward of pure reciprocal love experienced by giving of themselves unconditionally, that keeps life going.
“If we affirm one single moment, we thus affirm not only ourselves but all existence. For nothing is self-sufficient, neither in us ourselves nor in things; and if our soul has trembled with happiness and sounded like a harp string just once, all eternity was needed to produce this one event—and in this single moment of affirmation all eternity was called good, redeemed, justified, and affirmed.” Nietzsche
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.
What a strange life we are living at the moment! Due to the latest bout of Andy’s hyperactivity we have all regularly been up through the night over the past while.
Last night was particularly difficult for us all. Andy appeared distressed and agitated for long periods and his only distraction was the water running from the taps in the bathroom, shower room and kitchen. Jen and I fell into our usual pattern of sharing the responsibility by taking turns at supervising and dozing throughout the night. By the time it was light again Andy had calmed a little but simply could not resist the urge to keep playing with the taps. I decided to take a chance on encouraging him to go to bed by putting the water supply off. It could have produced more agitation but in fact it seemed to be more of a relief to Andy and although he never settled to sleep until after 9am it appeared to help.
We all spent most of today sleeping but by early evening were all on the go again. Body clocks out of synch with the world around us, the day was over before we began our waking hours. Andy’s anxiety was a slow burner but by 8.30pm he was stomping around clearly distressed. I took him out in the car dressed in pyjamas and when he indicated he wished to go to a local holiday village for a milkshake I just drove up without thinking much about it. It was a little strange then to see families on holiday having meals and drinks and generally enjoying themselves. The place was very busy – oh yeh it’s August – and we endured quite a few stares as Andy ran about the place still very hyperactive and overwhelmed. I realised I was quite dishevelled myself and we must have made quite a pair as we struggled to fit in to this parallel universe. After we managed to get back to the car I reflected on how I felt – fuzzy headed, out of step and different from those around us. I wonder if that is how Andy experiences life most of the time?
We are facing another potentially long night and as I write this it is way past midnight. Andy is dashing around in and out to the garden carrying a piece of pizza and playing with a rather bemused puppy. His life is driven by such different goals and yet he is in a world that fails to recognise or accommodate him as he is.
This is an old blog that had resurfaced on FB and was attracting a little interest again. I had been attempting to give different family perspectives on Andy’s autism.
Continuing with family dynamics this is dad’s perspective.
Andy was named for Big Andy Ritchie, the best ever footballer to play for my beloved Morton. Jen went along with it because we liked the name, but for me it was all about Big Andy. He was a magician with a football and brought the most incredible joy and excitement into our lives. I played a wee bit myself and when my kids came along I had a notion that one of them would be a footballer. Things have not worked out that way however. We knew before Andy was diagnosed that he had autism. We delayed putting the wheels in motion because Jen’s mum was battling cancer and we were having another baby. Life was so busy. Andy was in many ways a good baby and really bonded to me and I wasn’t sure (still am not sure) what difference a label makes. Many around us however doubted what we told them about Andy and I suppose it was as much about them to a degree.
The diagnosis was a formality in a lot of ways but also a confirmation. I cried at the diagnosis. I cried because it officially confirmed what we already knew. I cried for what might have been, but most of all I cried because I loved Andy so, so much and it was not the life I wanted for him. To me he is and always will be perfect in every way and this seemed to be saying he wasn’t.
Life as Andy’s dad is both a privilege and hard, hard work. His support needs to live in a neurotypical world are high and this affects most aspects of our lives. We are learning constantly about him and his autistic world and it is a very interesting world! It is demanding of time and has no awareness of, or respect for the “normal” world we neurotypicals live in. He experiences the world differently and has little interest in our world most of the time. I guess the secret is to accept and embrace Andy’s autism and support him to live as full and as joyful a life as possible. Mostly I feel we do this but at a cost of limiting our own life. Generally this is fine but I regret the times I let my other children down by not being there or by not having the energy to support them as much as I would like. The privilege and rewards are in the connections we make with Andy and at these points in life the joy is over-whelming and as a parent and a family there can be few better things. Even though he doesn’t speak (yet) he conveys his love for his mum and dad and brother and sister in his own way.
As his dad I sometimes feel guilty about the amount of time and effort I put in with him. It is frequently more than for my other two beloved children but I have come to realise that as a parent you respond to your children’s needs intuitively. Often that need is greater for Andy and although there is risk (of neglecting the others) it is a risk I have to take because he needs the support. As a family we are a strong unit and Andy is at the centre of that. Andy’s care needs also affects the amount of time Jen and I get to do anything together. Fortunately we are both completely devoted to the care of our children. When I consider Andy’s autism and its impact on our family I am not sad as I know that he is very special. Wee Andy provides a joy and awe in our lives similar to and beyond that provided by Big Andy on a football park and for me it couldn’t get any better than that!
Our wee pup is now 6 months old and his positive contribution to all our lives just keeps growing, just like him!
One of our main hopes for Bailey was the potential for a constructive relationship with our 10 year old autistic son Andy. We have been at times simply stunned at their interactions. Andy’s desire to touch, explore and lark about with his new friend has been wonderful to see. Bailey’s tolerance, gentleness and enthusiasm for their relationship is testimony to his beautiful nature.
Where human interaction – eye contact, social contexts and verbal commands – are so often overwhelming for Andy, with Bailey interactions are much less so. In fact it is Andy who very often initiates their “conversations” and as befits the interactions between a child and puppy the context is generally one of fun and frolics!
On Andy’s recent return from a respite visit the often problematic transition back into our home and family was eased greatly by his immediate happy reunion with Bailey. The pressure to face all the human contact that characterises our reaction to his return was simply deflected as he went straight to our beloved puppy, smiling and laughing as he put his head onto Baileys in greeting. They had their usual dance of mutual affection up and down the hall, a mass of stims and a vigorously wagging tail.
It was another great moment from the gifts this wee dog brings to family life.
A Family Outing!
Last week I read a great blog by a wonderful autism mum about the difficulties autism families have simply leaving the security and safety of their own homes.
We often have the same problem here. It tends to mean you are forever weighing up the pros and cons of attempting even simply outings. We are fortunate to have a car and this helps as it almost acts like a mobile extension of a familiar and safe place for Andy and can avoid major problems in the community. He often refuses to get out of our car when we arrive at a planned destination though.
I was thinking about all of this today when we decided to try a short family outing to Benmore Botanic Gardens. It was our first outing of the holidays with the whole family, including our new addition, Labrador pup Bailey.
The sun was shining by the time we all piled into the car and it felt great to be at least trying a family excursion. We were all aware however that as always we might require to change our plans at short notice.
Today was a success though and Andy was happy to get out of the car and into the gardens for a walk. It felt lovely to be strolling through this beautiful place with all our children and the dog. We were a real family doing a “normal” activity. We even managed an ice cream in the cafe afterwards.
As many other families head off on holidays abroad or embark on a program of activities with their kids it can be difficult for autism families to simply survive school holidays at home. As a parent it felt good today to be doing even a small thing as a family.
I have been trying to take on too much recently in the role of autism advocate and have in turn been less able in my carer / dad role. The fact that Andy has had a cold and has required lots of love and reassurance has been a “heads up” for me. With his increased needs comes a chance to be reminded of the rewards Andy gives back in his joy, happiness and love. My dedication to him and love for him is the most important thing in my life I was reminded. He is the reason for everything I do and I would not have it any other way. I have therefore taken the decision to try and take a step back from the futile business of trying to influence those at the policy making level.
The facts are there if they were truly interested. I don’t believe they are.
And so my priorities will be immediate and local issues from here on.
Round about Andy’s care this week I was privileged enough to be asked to speak at a local launch of part of a new piece of forthcoming Carer’s rights legislation. It was well attended and received though sadly NOT ONE invited councillor, politician or social work professional found it important enough to attend. I will let you draw your own conclusions!
We also had another very busy drop in event for local autism families. It went well – informative, relaxed and comfortable. We try to support each other emotionally and practically. The need for our group had never been more pertinent.
3am Andy up for the toilet. Takes a good 1/2 hour to resettle.
6am Andy up and awake. Gave him juice and put on his T.V. and gave him IPad in an attempt to keep him in room without disturbing others.
6 – 8 am periodically check on Andy but return to bed to dose in between.
8am Andy up and into bath. Jen gets up as it is my “lie-in”
8.30am till 9.30 am lay in bed resting attempting to ignore Andy’s outbursts and Helen playing.
10 am got up and hung out washing
10.15 am put on next washing, put away washing
Andy has a poo in garden, assist Jen supporting him
11am sat down to write email regarding house adaptations and uncertainties arising
11.15 am Andy presents me with clothes – his sign for going out. Take Andy and Dave out in car. We go for a milkshake. Between the car and cafe Andy touches several tourists who are sitting on bench. He kisses an elderly man on back of head! I apologise and explain. Happily they are all fine.
Get milkshake at cafe.
12 pm return to car and go for a run around town. Andy does not want to get out at park.
12.20 pm return home. Continue with email.
12.45 pm hang out next washing. Have cup of tea.
1pm Jen takes Andy out to supermarket, I attempt to wash up dishes.
1.20 pm Jen returns back with an upset Andy who refused to get out car at supermarket. I sit with him and try to console him. He indicates he wants to go out.
1.45pm out for a walk with Andy and David ( Jen returned to supermarket)
Walked around town with Andy. Concentrating on keeping up with him and keeping him safe from traffic.
2pm unable to direct Andy past cash line to get money. We make our way to the cafe again and I ask girl who works there to give us milkshake and we will pay later. This was ok.
2.15pm left cafe, Andy wanted to walk along front. He poured most of milkshake into the Clyde.
2.30pm back in town walking. Managed to direct Andy towards home.
2.45pm Arrived home, tired. Completed and sent email while Andy in bath.
3.15pm kept eye on kids in back garden while having a look at material for university .
4.30pm Andy requests to go out. Take him out for a drive in car, Jen makes tea.
5.15pm Quick meal while Jen covers Andy .
5.30pm Jen has quick meal while I watch Andy.
6pm Andy wandering about, grazing on finger foods and in and out of bath. He is getting tired and a bit upset.
6.30pm iron school clothes for David an Helen.
7pm begin bath time routine.
I watch from the window, as my precious boy bounces on his trampoline in the garden.
His stims appear like an art form – a mime of excitement that seem to celebrate his surroundings. He looks upwards to the blue summer sky that forms the background to the branches of the trees blowing in the wind. He is delighted by the summer breeze on his naked body. The feeling of warm air and the energy in the trees intensified by his own movement as he bounces and stims and laughs and smiles. He rejoices in his solitude using his senses to explore the environment around him. Care free, happy and without inhibitions. He pees in an arc laughing joyfully. He giggles and jumps and for now all is fine in his world. Contentment and joy abound as his sensory receptors seem to be over flowing with only good things for now at least. No demands for uncomfortable social interactions or confusing behaviours or the harsh lights and sounds of a modern and complex world. Only the natural sounds, sights, smells and feelings from the garden. Unthreatening and beautiful. Just like my precious boy, at one with the world. I watch and learn.
Lots going on this week in the quest for services, support and understanding for ASD. Some day it all needs to be documented publicly because much of what goes on is scandalous and can get me down. The brutal cuts that are coming are going to have a devastating effect on many vulnerable people who deserve so much better in a civilised society. For many families living with disability there are cuts on a number of fronts. I was informed this week that the local authority I work for will be imposing a substantial pay cut on me and many others. We will oppose these actions as vigorously as possible but last week’s election results have given something of a mandate for these types of cuts.
However there were some positives this week too. Today I found out I had scraped a pass in my second module of a post graduate certificate in autism. That’s two down one to go! Given what’s going on in our lives I was happy with the pass and the fact that my feedback stated ” The student does meet the basic criteria well and the content of the information meets the necessary standard. It is the presentation which reduces the grade of the submission.” Well I guess sometimes your presentation just goes out the window when you are an autism parent 😳
Now that the exams are over and I don’t start back till September I am looking forward to a long summer of partying 😄. Well maybe not! I remember my final exams nearly a quarter of a century ago and the crazy celebrations. Actually I don’t but I have it on good authority it was a wild night!
We also had another local autism support group this week and it is starting to take shape I feel. Slowly our numbers are building and it is great to have a chat and cuppa with other parents and carers. It is incredible the experience and knowledge that emerges at such events and I am proud to be part of it all. We hope to make a very positive contribution to the lives of those living with A.S.D.
Let me end by reflecting on and acknowledging the amazing things achieved every day by those with autism and their parents and carers. It is not always easy and the challenges are often great but the effort is easily worth it when we succeed. Whether that is securing a service or resource, overcoming a sensory or social difficulty or just getting through another day. I salute you all even if our authorities and politicians so often do not!