In the months that followed, these same young people spoke at the Scottish Parliament to plead with MSPs to invest in autism, and I followed on directly after their appeal. Firstly, though, I had to apologise for Dale’s absence, because the evening coincided with an Alice Cooper concert, so naturally, Alice had won! Jokes aside, I appealed to the politicians: “The young men you have met this evening are the minority, because they have been fortunate to receive condition-specific education at its best. If this government invests in autism now, it will save millions . . . and adults of the future like them will be the majority.”
I still carry that hope.
With the summer break upon us, Dale and his friends returned to T in the Park and had a brilliant time. Ryan had recently passed his driving test, which encouraged Dale to learn too. Yet again, an acquaintance who had known him since childhood was a driving instructor, and he took him under his wing. Thorough as ever, he bought a Learning the Highway Code DVD, and very quickly, he got the hang of how to handle the car safely. So much so that his instructor noted that because he followed instructions precisely and adhered totally to the Code, he was the safest and most trustworthy client he had ever taught!
Driving lessons filled Dale’s time well, and it was wonderful to see his life settle down. Meanwhile, my own life was anything but normal. I remained off work, and the Bed-a-thon continued to decimate any chance I had of a decent night’s sleep. Certainly, Amy was now well installed in the study and things were better than they had been. Better, but anything but fine. In an attempt to reinforce her new routine and increase the hope of success, I sought the help of her ASD specialist paediatrician. I was aware of an unlicensed drug commonly used for children on the spectrum with sleep problems, Melatonin. Melatonin is a sleep hormone, which normally increases at night. It is, of course, not really a drug, as it is produced naturally by the body. The doctor felt, as I did, that it might help Amy establish a new sleep routine, so it was well worth a try. There are various starting doses, the full dose being kept in reserve, as a last resort.
To make sure I had covered all options, I did more research into sleeping disorders with autistic children. I came across a successful tactic: using a “snuggle sac”. This was a furry but snug sleeping bag, which gave a feeling of security to the children using it. Dr Temple Grandin, who has autism, has written extensively on how sensory issues adversely affect those with ASD.{1} Her work details how controlled, tight pressure works to address the imbalanced tactile need. As a veterinary inventor, she has created a squeeze machine for herself, based on a device she had earlier designed for cattle. Unquestionably, it has helped reduce her acute anxiety levels and alleviate her feelings of insecurity.
“I have been talking and writing about sensory problems for over twenty years, and am still perplexed by many people who do not acknowledge sensory issues and the pain and discomfort they can cause.”
– Dr Temple Grandin, The Way I See It
The “snuggle sac” and weighted blankets have proved successful for many children, giving similar feelings to those Dr Grandin experienced with her machine. I found a sac (a horse one, of course!) and put it on Amy’s bed. On the first night, I gave her the minimum dose of Melatonin, sat at the door of her room, vigilant and silent, until she slept. A successful week later, I thought the problem was solved. Not a chance! Steadily, as the nights passed, the old Bed-a-thon routine crept back. Nothing had changed. I had to ask. When she explained why she still woke up, I thought the Bed-a-thon was with me for keeps: “Nuala, I like my sleeping room, but I still miss you too much!”
Wow! How could I find a sensory replacement for me? I could understand how she missed stroking my hair, and her dad’s, because she had done that since babyhood. Seemingly, she received the same calming effect from our hair as she had gained when flicking her “Golden Pillow’s” ears. How could I provide her with all the other positive sensory stimuli I gave her – my smell, my clothes, my whole physical being? A few days later, a mad idea came to me. There was a risk it wouldn’t work; it was somewhat unconventional. But like so many times in the past, I felt it was worth a try. Sometimes we all need to take a risk. Especially when the stakes are so high. I needed to make a mini me!
I paid £30 for a two-foot tall, lifelike doll, complete with long, dark brown hair. Together, we cut the doll’s glorious tresses until they resembled my own short style. Poor “me” had had a bad hair day, but Amy loved the result. Then I found a pair of doll’s jeans to fit “me” and a T-shirt, (with a horse on the front!). Finally, I let her spray “me” all over with my best perfume. Subtle this was not! Well, the first night “we” slept together was a complete success. For months thereafter, with her Melatonin at maximum dose, Amy and her “Nuala Doll”, slept until dawn. Having two Nualas in the house offered us some extra opportunities for fun. Some days, to divert her from the computer, or just to indulge her a bit, I used my effigy as a prompt: “Amy Gardner, will you please go and change my clothes, I’ve been wearing the same knickers for weeks – they’ll be stinking.”
While the Bed-a-thon wasn’t completely cured, it was more manageable, and just in time. Our lives were about to be shaken to the core.
In August 2009 we headed to Fife to support a friend, Gillian Naysmith, who was holding a fundraising day for the NAS at one of the local churches. She had asked me to speak at the event, and parents were attending to meet me. However, like most mornings, with the entire household to rally round and try to get the time for me to look and feel the best I could, it was too much to ask. Jamie had his schedule to get us there on time, which he stuck to.
As I tried to take a few minutes to ready myself he reminded me, “We need to leave now or we will be late.” Aware of the time, in desperation I asked him to ensure Amy was ready. Minutes later, with the pressure mounting, I seized my bag and coat to find Jamie with Amy in the hall. He grabbed Amy’s brush from the hall table and started to brush her hair.
“What are you doing?” I asked. “Amy can brush her own hair.”
“I was only making a start. We need to go now, we’re late.”
I wearily responded, “If it’s speed you want, the worst thing you could do is give Amy more pressure by telling her to hurry.”
There are so many pressures being a mother of a child with autism, and the strain it puts on a relationship is immense. It is vital when working with children with autism that all involved must have the same approach. If one person undoes the chain, the child gets confused and frustrated as a result. More annoying for the child and “teacher” is that the skill has to be retaught from the beginning. All my married life I resigned myself to the fact that addressing the majority of the children’s autism and giving them discipline was mainly my job as their mother. Jamie was able to opt out because he worked with computers, reminding me, “I’m not a teacher.” I had no alternative but to learn on the job all the different skills I had acquired throughout the years. It was a hard, lonely, frustrating and mentally exhausting never-ending workload.
We arrived as the event was getting busy. Inside I felt numb with stress with the resulting domestic in the car that took up most of the journey. I took a deep breath, to get on with the job in hand: to ensure Amy had some fun.
I had taken along a cuddly pack, and Dale was to be signing A4 copies of Henry’s portrait for a donation to the cause. Adding some interest, we dressed Henry as an “autism dog”, with a green collar with a recent picture of Dale in the key ring fob. Henry’s harness had a green lead in a loop, and I added a model Henry train on the second hook to complete the package!
There was a superb turnout. We set up a table for Dale, with Henry by his side, near the front entrance to the hall. That dog was such a draw. Firstly, it was unusual for a dog to be in a church at all, and secondly, his attire was somewhat different and just a little eye-catching! Within minutes, I was on call to act like a celebrity’s security guard!
A mum passed, holding a beautiful little girl by the
hand. The child looked about seven. She stood mesmerised, seeing Henry and observing people fuss over him. Slowly, she approached, saying nothing, and then she began to touch him. She patted him, and then gently ran her hands up and down his back, enjoying the whole sensation. She moved on to fingering his face, whilst looking deeply into his eyes. By the way her mother supervised her, I sensed that she had autism. Henry, of course, didn’t bat an eye during his examination. All was going well, until her mum tried to move her on. She jumped up and down with anxiety and excitement, screaming, “My dog, my dog, my dog!”
She became so upset that Dale had to intervene. He knelt beside Henry, moved his collar round and showed her his picture tag. “I’m Dale, and this is my dog . . . Look, Dale’s dog.”
She studied the picture tag. Wonderfully and almost instantly, she calmed down, gave Henry a pat, and then wandered off happily with her mum. She returned several times thereafter, just to pat and touch Henry, fully accepting that he belonged to Dale. I was relieved that I had taken the time to put that picture on his collar. One little “adjustment” was all that was needed to prevent a tantrum for one little girl.
That day, many autistic children gave Henry a good once over. Some had a tug at his tail, intrigued I think, that it was definitely attached! Others were drawn straight away to his train and green lead.
A four-year-old non-verbal boy was totally captivated by the cuddly pack, so I helped him play with it. He clearly loved the big toy, complete with Dale’s picture on the collar, and so he was able to accept it too was staying with his master. He laughed loudly when I pretended it was barking. I grabbed the brush, showed him how to use it and gave it to him. “Ross, brush Cuddly?”
He copied my actions, and was amused when I put the toy’s head in the metal bowl and “it” made loud munching noises. If it had been another time and place, I could have sat with that lad for ages. I truly enjoyed building on the interaction, lengthening his fleeting eye contact and developing imaginative play with him. He was just so responsive. His parents were delighted to see their son’s potential with the right educational motivation. Anyone could have understood that fact, watching those children that day. Dale took good memories home too.
After the school term started, he was recalled to work in the college nursery. By now he had acquired a good level of practical experience. Not only that, his CV was terrific. One morning while he was at work, the phone rang. The caller was his DEA (Disability Employment Adviser) at Jobcentre Plus, to inform him that a part-time job-share (17.5 hours) was available at the college nursery. A permanent position! It was a chance in a million and perfect for him! The hours were manageable and therefore virtually stress free. Job sharing would allow him to work with his group, with the added support of an experienced childcare worker. He applied immediately.
With Prospects on board, the interview panel was well aware of the adjustments he needed. He was informed that, “The interview should last for approximately forty-five minutes.” We felt quietly optimistic, knowing that he would get an impeccable reference from Barnardo’s. As well as being on the panel, the Head of the College Nursery was another referee. Prospects had him well prepared; he even felt ready to attend on his own, knowing that he had already been doing that very job on a full-time basis, if only for a short time.
On the day of the interview, he looked so professional and confident in his suit. On his wrist was his Grandad George’s watch. He left in plenty of time. His dad was driving him, so he was not under any extra pressure. I enjoyed my shower and was just settling down to a leisurely breakfast when, to my utter amazement, Dale and his dad arrived home. What was going on? Jamie explained: “I was sitting waiting in the car, reading the newspaper, and he was back within fifteen minutes. His interview only lasted ten minutes.”
What was going on? Dale’s adjustments alone should have taken time to implement. Something wasn’t right, whether he was successful or not!
As we waited for the post to arrive, for the rest of the week he continued to work. Returning home on the Friday, I met Dale in the hall. Something was wrong. He avoided looking at me; his eyes blinked furiously as he struggled to get out the words. “Mum, while I was in the office, the head told me a girl got the job because she gave lots of feedback at the interview, but they are happy to have me on supply.”
He made his way up to his room. I stood absorbing his words and became absolutely enraged. How could an interview of ten minutes have given him any chance? On that basis, how can anyone with autism be given a fair chance to find work?
“I don’t think that applying normally for jobs works because on all of their adverts [. . .] you must have strong communication skills.”
(Source: Paula, NAS. Don’t Write Me Off campaign.)
The more I thought about Dale’s situation, the angrier I became. Why did he have to find out about the job from his DEA? Why had no staff at the college mentioned the position to him? It was the perfect post for someone like him, particularly given his disability. If that wasn’t bad enough, ten days after the interview, the letter confirming the bad news fueled our outrage: “You have not been successful, as other candidates have come closer to the specification for the role.”
I got in touch with Prospects, who were upset that Dale hadn’t had a fair chance at his interview.
Dale plummeted. All the autistic tics returned; his eyes were sunken and dark and blinking constantly. His voice became hesitant, and that cough returned. He was simply wrecked. Yet, he did something that I don’t think anyone else would have chosen to do in his shoes: he continued to work in that same nursery until the new girl started.
“Mum, where’s the picture the college sent me of my graduation class? It reminds me that I did do well, and achieved a lot for the kids.”
We were determined to obtain answers, so we met with Billy Docherty. Yet again, we had to compile a long, strong letter to the college principal: “If Dale was not the most suitable candidate, why was he constantly being relied upon to cover shifts at short notice? What is your policy on informing job candidates whether or not their application has been successful?” Dale had, after all, been told in front of an office assistant and the deputy head. Afterwards, he had to carry on regardless and complete his shift.
“Why did a forty-five minute interview process last no longer than ten minutes?”
We requested copies of both the interview notes and the questions set. Further, we made the point that the permanent post would have been better for Dale because of his autism, rather than working at short notice in erratic and unpredictable patterns. While we awaited a reply, Billy sought advice from the Equality & Human Rights Commission. Just a few months after Dale had joined Unison, a public service union. We also requested their advice.
In order to maintain his self-esteem and to increase his opportunities to secure a permanent job, assisted by Prospects and with help from his DEA, Dale agreed to start a work preparation programme. It commenced in November at Cairn Curran, a local private nursery. He attended, voluntarily, every Tuesday and Thursday and worked in the same way as any other member of staff. Some weeks he worked at both Cairn Curran and at the college nursery. Truly, he was in demand.
When the new girl started at the college nursery, he found himself back in the maze of Jobcentre Plus, as Cairn Curran was unpaid work. He coped with incredible fortitude and was not to be crushed. He had to attend a back-to-work session in order to keep his Job Seekers’ Allowance (JSA). This meant: “You must make suitable efforts to find a job and put yourself in the best position to get offers of work.”
I appreciate that the welfare system is complex and has to meet many situations. However, what Dale had to put up with was stressful in the extreme, and ultimately confusing. No wonder many of his peers give up. It took me months to decipher the system to try to support my son. Matters were doubly complicated because he worked on supply. With help from his DEA, I devised a checklist to help keep him right. It was necessary because
the process was so perplexing. Without that safeguard, he could have lost money or even been fraudulent, inadvertently.
As he claimed JSA, he was permitted to earn £100 a week, but only if he worked sixteen hours or less. When Dale declared this work, he had to ensure a B7 form was filled in, to allow his JSA levels to be adjusted. The B7 was to ensure he wasn’t called for “back-to-work interviews” if he was actually working on that day. If he was free, supply or no supply, he had to attend. That was just the beginning of an administrative labyrinth. Working more than sixteen hours? Sign off within twenty-four hours (assuming someone was there to answer the phone). Sign a book! Return it to Jobcentre Plus! Have your P45 at the ready, take parts to your employer for tax purposes . . . and then there was the tax situation to be addressed! Is it any surprise that people give up? Is it any revelation at all that someone with autism would let go? Dale would never have been able to manage the system, and nor would I, without the guidance of his DEA. At least there was good news elsewhere.
At the end of his work experience he received a glowing report: “Both Prospects and Dale’s host employer feel that Dale has demonstrated the knowledge, skills and personal qualities necessary for employment in early years support.” He enjoyed working at Cairn Curran so much that he continued there, on a voluntary basis, after his work experience had ended. He wanted to maintain his skills whilst seeking permanent employment. It was encouraging for me to hear from the Head: “Dale is amazing with the children. They all adore him. I just wish I could offer him a job, but there’s no sign of any hours becoming available.”
Eight weeks later, we were to receive a reply from the college. Had we wanted to challenge Dale’s situation at an employment tribunal, it would already have been too late, as cases have to be submitted within three months of an incident. We had thought seriously about doing that, but in truth Dale was too stressed, and it was already detrimental to his health. The reply to our letter was inadequate and unhelpful. The requested copies of the interview notes and questions never materialised. Why not?
All Because of Henry Page 14