Suddenly, I heard the sweetest little voice. “Nuala, do you want me to hug you, to see if that helps you?”
“Amy, thank you! Yes please, darling! You are so kind.”
She hugged me tightly, and kissed me on my shoulder.
“Nuala, I love you. Do not worry. Team Amynual will be good.”
What was coming next? I couldn’t know, but face it I would! I had to think about creating a future for team Amynual, and the vandal! I would! And somewhere, unknown to us, a certain Sir Henry had his part to play too.
16
Moving On
“We need another and a wiser and perhaps a more mystical concept of animals. Remote from universal nature, and living by complicated artifice, man in civilisation surveys the creature through the glass of his knowledge and sees thereby a feather magnified and the whole image in distortion. We patronise them for their incompleteness, for their tragic fate of having taken form so far below ourselves. And therein we err, and greatly err. For the animal shall not be measured by man. In a world older and more complete than ours they move finished and complete, gifted with extensions of the senses we have lost or never attained, living by voices we shall never hear. They are not brethren, they are not underlings; they are other nations, caught with ourselves in the net of life and time, fellow prisoners of the splendour and travail of the earth.”
– Henry Beston, The Outermost House
At last, the Moorfoot school term had ended and Dale came home, spilling over with the now customary but still welcomed gifts and cards and good wishes. That summer wasn’t the worst I had known. It brought us stability, despite the change in family dynamics. Dale and his friends opted out of T in the Park 2011 because the line-up wasn’t to their liking. Instead, they upped their Glasgow social life. Amy was excited about starting Primary 6, and busy, attending play schemes and shared days out with Jamie and me. Maybe a little of the tension had begun to lift at home for her, knowing that her parents were going to go their separate ways. It’s a myth to think staying together is always in the best interests of the children. Even planning the move was helping to stabilise Amy. All of us, if truth be known. Even Jamie was already beginning to move on. I could see it in him. Even if that paper was still between us, something was moving in the right direction. On that, at least, we could agree. That helped Amy, a lot. So she was settled, but life for Dale was less easy.
Again, he had no supply work. He continued working with Barnardo’s and Prospects Social Group helped fill in some time, which maintained some sense of worth. However, the gap in the week was huge, and I witnessed scenes he had struggled to avoid for five years. He retreated, spending hours alone on his laptop. At least now he could drive, so he broke the monotony by taking the boys out. Nonetheless, time remained his enemy. Day after day, he searched for jobs, but there were none. Weeks became months. His only time out was signing on. This degrading routine – endlessly seeking employment, dependant on the welfare system – was grinding him down.
One morning there a loud knock on my bedroom door. Jamie handed me the phone.
“It’s Alberto, calling from Spain.”
It had been four years since I had seen Alberto. Refreshingly, he had lost none of his enthusiasm. He brought good news. His friend Beni wanted to translate my book into Spanish. Marvellous! That wasn’t all. “Nuala, we have placed a few dogs with severely non-verbal autistic children, and it has gone well.”
PAAT had used my book when training autism therapy dogs for a couple of families. There had been problems – but not with the dogs! Sometimes, the parents’ knowledge and management of their children was inconsistent, and that hindered progress. PAAT wanted my help with the parental side of their programme. The transitional care before the dog’s arrival was inadequate, and strategies on the use of dogs as educational facilitators were lacking. PAAT were exhausted. It would certainly help to have my book available to parents in Spanish. However, Alberto and Jane wanted to do much more, bringing my experience and theirs together to replicate lessons learned from Dale and Henry.
I felt alive again. My hopes soared!
It didn’t matter who used my work. What was important was that it reached families! PAAT’s aim was mine: to achieve the greatest independence possible for the child using the dog. Our programme would be unique. I was inspired.
Already they had achieved so much. In their programme, the children chose their “own” coloured dog lead, just as Dale had done. PAAT found that the children held onto these leads, and spontaneously walked beside their dogs. The adults had control of the dog with another lead. Just as I had found. This was momentous. If children are attached to their dogs it is difficult to undo that teaching. There was so much to discuss.
“Nuala, you must come to see us so we can make this work.”
I couldn’t wait! I could hand my programme to PAAT to be translated. They would encourage interested parents to read my book so when they used the resources and strategies, it would be meaningful.
“Nuala, what shall we call our programme?”
Simply, “Gardner & PAAT Canine Guide to Autism.”
I explained about my pending divorce and my perilous health. Our phone call finished with Alberto organising a date for my visit.
Just when I thought things couldn’t improve, I came across a vacancy in a newspaper. Cairn Curran Nursery! Dale had worked there voluntarily for seven months, and it needed a permanent, part-time HNC childcare worker. Janice, the nursery head, thought highly of Dale. Earlier, she had been unable to offer him employment, although she wished that she could. She had given him such a glowing report. He was on to the case immediately!
Seeing his enthusiasm return as he prepared for his interview was brilliant. How many times had he worn that suit now? I treated him to a morale booster: a silk tie and blue shirt. When the day arrived, he looked really professional.
“Mum, I feel good about this, because my voluntary work at Cairn Curran was in the hope that I might get a job there. Janice will be one of the staff interviewing me, so I have no worries.”
He came home, relaxed.
“Mum, it was the best interview I have done. They will let me know in a letter in a week’s time.”
It was a long week, but when the letter arrived, I left it in his room. Minutes later, he came downstairs. Silently, he handed it to me, and put on the kettle. My heart sank. There was no offer.
That was it. No reason why, just the usual words of rejection.
I went to my bedroom, clutching the letter. If I felt hellish, how was Dale? I was beat. How could I help keep him going, bogged down as I was? There was that spectre again. Should I have let him be? Let that lonely, autistic world keep him? Would that have been kinder? How would this latest, most cruel rejection affect him? Despite his determination, he was reaching his limit. I went upstairs. He was in front of his laptop, drinking his tea, withdrawn.
“Dale, I’m so sorry. You deserved that job. I know you want time to think. I will talk to you soon. I love you, and will never give up on you!”
How could I help him maintain his self-respect? It was vital. If a person with autism loses that, the consequences can be dire, and can lead to regression. Unthinkable. As I had done many times before when lost and desperate, I emailed Jim Taylor for advice.
His response was not what I had expected, but as I read it, a light flicked on. “I guess that this is the next big barrier for those kids that we see making SO much progress. They are more ready for the world, but the world isn’t ready for them. I remain in contact with a young man who left Struan School last year. Again, he is a very able young man but is struggling to make headway.”
His words echoed what I knew from Prospects and elsewhere. Dale read Jim’s email. It did make him feel a little better, but it opened up his feelings instantly. He didn’t hold back!
“I’ve had enough! I’ve lost my passion for nursery work. I never want to do it ever again. Barnardo’s is different. They treat me wel
l, and I can give something back and use my skills, but Mum, there’s more to me than autism!”
He had met Janice. They had taken on a more experienced candidate. She thought he should work with people with disabilities and autism. This enraged him. After all, he had five years of experience with Barnardo’s. I let him use me as his emotional punchbag.
“What more do they want? I’m worthless, only useful for voluntary work!”
I put him right on that. By now his curriculum vitae was incredibly impressive – autism or no autism.
“Mum, I grafted for five years to work in my chosen career, but it’s useless. Many treat me as if I’m stupid, stereotype me as being obsessive and incapable, because they know I have autism. No matter how much I have achieved or how successful I am, I have to prove and achieve more than my peers. I am as capable as anyone else, despite my autism.”
I saw his choice in tatters. Who could blame him? Both Dale and Jim’s words rang in my ears.
“It’s useless.”
But the world isn’t ready for them.
“Dale, what if all you have been through isn’t for nothing?”
“What do you mean, Mum? I’m going to try to get any job now. I’ve definitely had enough. I mean it.”
I respected that. I sat down beside him and asked, “Will you allow me to tell your story again? Let people know the barriers and injustice you have faced as an adult.”
“It’s not just me. My friends and clients at Prospects have faced the same. I’m not that special.”
My brave son agreed to let me tell his tale. The decision was precarious, but worthwhile. Not nearly enough has changed. Even in death, Henry had gifted us a future. We chose to unwrap it.
On 30 September 2011 I ended my career as a nurse, took my name off the register and put it all where it belonged, in the past. Dale continued his voluntary work at Barnardo’s and became involved with The Shaw Trust, a local employment agency connected to Jobcentre Plus. At last he was on a new pathway and he had a chance!
While I began to work on the sequel to Henry, my progress was interrupted. Nothing ever works uninterrupted in real life, after all! Laura’s daughter Katy remained in some kind of administratively-induced limbo. For the past two years, I had continued to visit the Highlands to back up my cousin in her fight to ensure that Katy received her entitlement – yet again, that essential, condition-specific education. In a fairer world, that would have happened automatically, but families with autism haven’t discovered that just planet as yet. Letter after letter, meeting after meeting, a familiar, wearying course. But luckily, Laura was up for the journey! Many a day, I spent hours on the phone talking through problems, just trying to keep her sane. One by one, I passed on the tools of my well-honed trade to my cousin: how to obtain an early diagnosis, and when that isn’t forthcoming, how to persevere in the face of an uncooperative system! After all, Katy was already four. She had made excellent progress. Her speech, her interaction with peers and even her diet had improved. That ballerina, tiptoe walking? It was hardly ever evident now and perhaps only really happened in times of acute anxiety. All these developments pointed my niece firmly in the direction of properly supported mainstream schooling.
Perhaps you’re wondering: with such leaps, did Katy really need a diagnosis? Why label the child? Well, here’s why. Without a formal diagnosis, support at primary school could not be guaranteed or adequately given. If her parents were to need respite (which they did already), how else could they access it? Their right to apply for benefits like DLA, The Family Fund{1} and Carer’s Allowance would be curtailed. These benefits and supportive pathways are not luxuries, whatever any passing governments may think. Most immediately, without a diagnosis Katy would not be eligible for the ASD support services available at The Pines, Inverness’ new NAS Autism Centre.
While in principle the diagnostic process has to be thorough, multi-disciplinary and not rushed, Katy’s own problems had been identified within her first year of life. Add in my two children’s situations, plus Uncle Tommy, and there was undeniable evidence of a strong family history. Further, it was obvious that Katy’s ASD was global. What more could be offered?
Once again, I sat down at my table with notepaper and pen. I seemed to have been doing this on a regular basis since Dale’s second birthday. My letter stated the case for Katy’s need for a diagnosis, on the tactful suggestion that many children still slip through the net. That was not all. Before writing, I did something that I wished someone had done for me when Dale was a child, something which might have saved me two years of hell, and avoided a painful trip to England to secure his diagnosis.
Since the emergence of her daughter’s problems, Laura had sent me copies of every letter and report she had received from the multi-disciplinary team. Only broken by needful tea breaks and the odd biscuit, I took my time, making it my business to be familiar with the notes. It was well worth it. I tracked forty-five signs, behaviours and traits matching those on the ICD 10 Diagnostic Criteria, thus qualifying Katy to have her diagnosis of autism. The most common ASD diagnostic tool is the WHO (World Health Organisation) ICD 10 6, which is used to determine the level of autism as a sliding scale (or continuum). A person diagnosed with severe autism, like Dale, can slide up the scale with a good education or can regress in times of crisis. That information is readily available on the Internet.{2}
I put all of this in the letter. Within weeks, Laura’s daughter was diagnosed. The multi-disciplinary assessment became a formality. Thankfully, the doctor and staff present were all very professional and were truly sympathetic to the significance of her diagnosis. Katy did indeed go to a mainstream school, with support. Her dad summed it up, perfectly: “If only Katy had been diagnosed a year earlier. We would have got on the Early Bird Training then, because it really helped us to get through to her.”{3}
For now at least, her future and that of her family had become a whole lot rosier.
I had a future to face too. Alberto had arranged an Easter visit to Zamora, which was timely. I was moving on. Although my confidence was still fragile, I prepared to talk to a letting agency. It felt like getting ready for an interview. So many private lets didn’t allow pets, but I needed a home for Team Amynual, including Thomas. I viewed a tenement flat in the heart of Gourock. Although initially it looked depressing and unkempt, I saw potential. What beautiful Clyde views! More, it was on the ground floor, with easy access to the communal back garden. Thomas Heaven! It had two enormous bedrooms and many Victorian features. The owners were a lovely family who had immigrated to Australia. They allowed me to do up their flat to suit us, and even reimbursed me for doing so!
I made a transitional plan to help Amy adjust. Her bedroom furniture was painted, I made curtains, and I shopped until I flopped, to create all that was needed to make the flat home. In fairness, Jamie was supportive, and we split our possessions to furnish both homes. Maybe he wanted me out as quickly as possible! No, it was more than that. The decision had been made. It was almost the first thing we had agreed on for years. We both needed this move. The whole family needed it. Amy was part of all the preparations, visiting and helping. Dale pitched in too. Together, we painted the lounge walls and when I needed a chauffeur for the bigger items, Dale was on hand, thankfully! For the first time in thirty years, I had no car. I couldn’t afford one. However, this was to have benefits for Amy.
She was a less independent, streetwise child than Dale had been at eleven, mostly because of where we lived and the preceding years’ difficulties. Suddenly, we had Gourock Railway Station, buses and a taxi stand on our doorstep. Amy had much to gain, and Dale agreed. On the worst days, Dale could collect her from school, and he was happy to drive her to their dad’s house. I never quite got over my pride when I waved off Dale, confident in the driving seat, Amy in the front passenger seat, and Henry sitting bolt upright in the boot, handsome as ever.
With life normalising – whatever normal may be – we settled into our new abode. I
spent every hour I could writing. The one who had the most difficult transition was, of course, Thomas! In our new life, that dog and I became joined at the hip. He couldn’t cope alone. Wherever I went, Thomas went. Even in the flat, he followed me from room to room, and he couldn’t settle at night unless he slept beside me. Vainly, I attempted everything to alleviate his anxieties. I tried leaving him with a generously filled Kong. When I doubled up his walk with a trip to the newsagent or the Co-op, Thomas became something of a local celebrity, if an anti-social one.
Naturally, I had to tether him outside shops. However, within five seconds, he would strike up an ear-piercing bark, which would continue until I returned. It would only cease if a passerby consoled him. To this day, shop staff and locals know when I’m in town. No one is deaf to the wails of the Gourock Canine Town Crier.
Somehow I managed to shed him occasionally! In November I had a presentation to give which tested my confidence but was also good practice for my Spanish trip. Blair Cochrane had arranged for us to talk to staff at Kingspark School in Dundee. It was important to both of us to get it right. Kingspark was a large special school, with a significant number of pupils with autism. On the big day, we synchronised our presentations as if we had rehearsed. In fact, distance hadn’t allowed that! Many of the staff were moved by my talk, and stunned by Blair’s work. To this day, a framed copy of Henry’s picture hangs by the school’s reception area.
All Because of Henry Page 20
