All Because of Henry

by Nuala Gardner

  Like many with autism, Dale has periodic autistic tics similar to the involuntary muscle movements suffered by a person with Tourette’s Syndrome. On the rare occasion it happened, it was a serious sign he was in autism crisis.

  The phone rang in the afternoon. It was Dale, in desperation: “Mum, I can’t cope any more with this pressure. One of the tutors wants me to meet her after lunch to discuss my assignment.”

  I suggested that he try not to be obstructive. As the meeting was about his assignment, I told him to see the tutor, reassuring him that Anna was contacting me soon. I felt dreadful, telling him to meet the tutor because I knew he was at the end of his tether. When he came home, he approached me, deeply distressed, fighting back tears. He just managed to utter, “Mum, I’m really sorry to let you all down, but I can’t take it anymore. I want to leave college. Mum, I’m beat! Please help me get out of there.”

  The sobs racked him. Hugging him, I was gutted to see my strong, determined son so defeated. He felt a failure. I told him how much I loved him and how proud I was of him, offering him his solace of choice: a cup of tea. Since childhood, tea had worked magic. So often, a brew saved the day.

  Afterwards, calmer but still down, he explained, “Mum, I went to see the tutor, and she began to discuss where I had gone wrong in my assignment. Then during the meeting, another tutor came into the room, and both advised me it would be better for me to leave the course, because I can’t handle the work.”

  I was shocked. Angry. I was the one who had coaxed him to go to that meeting, when deep down, Dale knew he would be coerced into leaving. I felt sick.

  “Dale, please don’t worry about any of this any more. Enough is enough. This is going to get sorted out for you, I promise.”

  As he was due back at Glynhill for his external assessment, I told him, “Dale, go to Glynhill – just to get your progress reports. I guarantee, you will not be going back to college or Glynhill until we meet with Anna to sort out this mess, whether it means you leave college or not!”

  6

  Maelstrom

  How much is the young mind and body meant to endure, the super­human efforts of an athlete in training; the musician practising into the night towards perfection? I can’t answer that, but I know that these months pushed my son way beyond his physical and mental limits. His health remained fragile as the stress tolled. He’d stopped eating, he scarcely slept. The autistic tics continued, draining him. We watched, desperate yet powerless. For the rest of that hellish week, somehow he managed to attend Glynhill, but he returned at breaking point: “Mum, I’ve made up my mind. I’m definitely leaving college. I can’t work at Glynhill. Enough!”

  I made several attempts, but it took until evening until he was settled enough to talk and share his assessments. Seeing the three reports for the first time, I began to understand. Dale had benefitted from a good trainer early in his placement, so he thrived until Christmas. However, in January, he was assigned someone else, who voiced that she was having serious problems interpreting his task manual. What on earth was going on? A trainer who didn’t understand her job? A trainer who didn’t understand autism? Her confusion prevented him from completing tasks on time. For five weeks, she did nothing to address the problem. Instead, she left him, fending for himself in the nursery, falling behind and with tasks undone.

  All three reports were confusing for anyone to interpret, let alone for Dale. Each practitioner skill category had four boxes, the student being: Highly Satisfactory, Satisfactory, Developing or Unsatisfactory. The first assessed how Dale used observations, and another how he consulted with staff regarding planning. Two boxes were ticked simultaneously, indicating that he was Developing, but also Unsatisfactory! Professionals working with autistic children or adults must know that those with ASD perceive and learn in a literal way. No wonder he was upset and perplexed! These reports were both negative and ambiguous, and were consequently bewildering and upsetting. In the interim report there was a statement in bold: “If the student’s performance is Unsatisfactory in any aspect of the interim report, the student will be given a second attempt in another placement.”

  While this policy seemed harsh, it was fair. As I read the reports, I could see what was going wrong. His over-monitoring began on Tuesday, 6 February 2008 and concluded on Wednesday, 14 February. Dale had been formally “assessed” three times within six working days. Subjecting him to such scrutiny would have been of dubious worth to the tutor, and was a disastrous pressure overdose for him.

  The more I looked, the more horror I found. What had not been done for my son. In accordance with the Motherwell adjustments, all involved were to be aware of Dale’s autism. That wasn’t so difficult! His life was so much in the public domain. Everyone concerned should have known the requirements and implications of his DDA adjustments. Instead, joint decisions were made, blaming Dale’s autism for his failure to progress at Glynhill and at college.

  At least in his February report, Dale’s areas of strength were recorded: “A very pleasant and willing student who is anxious to please and has a lovely manner with the children.” Again, two boxes were ticked describing him as Developing and Satisfactory. Still confusing, but positive at least. Only six days later, two indicator boxes were ticked, again showing Dale’s practice was Developing but also Unsatisfactory! Adding to this strange soup, the tutor wrote: “Dale has a good rapport with the children and interacts well.” He was “eager and enthusiastic about what he was doing”.

  It was noted that his preparation, implementation, recordkeeping and evaluation of practical tasks were all Unsatisfactory. This was, at that time, an accurate description of this aspect of his work. However: “The change of trainer feels Dale needs help to understand what he is doing with his tasks, as he finds paperwork very difficult.”

  This was clarified further: “Dale can carry out activities, but doesn’t fully understand why he is doing them.”

  I smelled an extremely nasty rodent.

  “Dale, why are you still finding your task manual difficult to understand? Under your Motherwell adjustments, this was all sorted.”

  I had really touched a nerve.

  “Mum, what the hell do you mean? It’s not just me that’s confused. My new trainer doesn’t understand my task folder either!”

  What could he mean? I pushed on. Frustrated by his attempts to make me understand, Dale stomped upstairs. Perhaps I had gone too far. Minutes later, he returned, carrying an A4 notebook. He pushed it into my hands, with a terse command: read it, and understand!

  The notebook contained a handwritten letter, dated 6 February 2008, from the new trainer to the tutor who had assessed Dale that week: “After speaking to Dale’s tutor about his progress [. . .] I explained to her that I am finding it difficult to understand what exactly Dale is expected to do for his tasks 4 & 5 [. . .] I am getting really confused. I feel I can’t support him properly until I fully understand myself what is expected of him. His paperwork is very hard to understand e.g. what his main aim for the day actually is [. . .] Could you please keep me informed on a weekly basis of what Dale is working on in the playroom and outdoor play, which he seems to be focusing on for his Task 5. Thanks very much.”

  “Dale, with your adjustments, you’re supposed to get your task folder adapted for you, in electronic format, and someone to help you understand exactly what is expected of you.”

  By now, sadly, his reply did not surprise me. “Mum, I was given the electronic disc in January, but got no help to understand what I was supposed to be doing. I’ve tried to work it out myself.”

  The assessment tutor had discussed Dale’s failures with him in full, and in tandem with the so-called trainer, had compounded his already lowered self-esteem. No wonder he was in such a state. How was it possible that he could have been so mistreated by professionals who should have known better? Those same professionals, at the diagnostic forefront, who were spelling out that condition-specific education must begin in nursery! Dale would
have read the tutor’s comments. How distressing must it have been for him, particularly in the context of his Barnardo’s experiences and the respect that he was accorded there. Worse, Dale had to contend with being repeatedly spoken to by the “tuppence worth” tutor and several others. I began to see that he had tolerated ongoing similar treatment since his return to college and to Glynhill. It broke my heart.

  “Dale is not working satisfactorily at HNC level. Dale would find it difficult to take responsibility as a registered practitioner. There is no guarantee of Dale’s final results. At this moment, it would be difficult to see Dale as a qualified member of a child care team.”

  And the tutor and the new trainer agreed: “Dale needs an awful lot of support and direction from staff. Placement staff feel he needs extra time if he has a possibility of achieving his HNC.”

  Ironically, they were right. Dale was, after all, entitled to extra time and human support under his Motherwell adjustments. Support that had never been implemented. Thud!

  “The tutor in the college was to document and explain within the notebook what practical tasks Dale was to complete.”

  Thud, thud!

  “Dale must communicate better with staff.”

  Everything was clear. Suddenly I became focused, my anger found its direction. I told his dad to make us a cup of tea. Tea! Once again, our saviour! As the kettle boiled, I retrieved a copy of the Motherwell adjustments, adjustments I hoped had been sent to the college.

  Tea in hand, calmly, I went through the adjustments, one by one. Dale’s reply became a mantra. “Mum, I work the same way as the other students.”

  I had the evidence that his adaptations were not being made, but to what extent?

  “Dale, who is the person [paid by SAAS] to proofread and spend time with you, for all your coursework?”

  “Mum, I don’t understand what you mean. How many times do I have to tell you: I’m treated the same as any other student in the class. There’s one tutor, Gwen, who spends extra time with me, and tries her best to help me, but she has nothing to do with my SAAS award.”

  Surveying the absence of support, I was astounded that he had managed to cope at all. That night I vowed that I would never again take his progress for granted. The Disability Discrimination Act of 1995 was meant to protect him. He sat motionless and quiet. Despairingly, he said, “Mum, I now understand why Prospects teaches adults like me to understand our rights. I thought discrimination would never happen to me because of the career I chose.”

  Something of the old Dale was beginning to re-emerge.

  “Dale, if we can improve things for you at college and on placement, would you still want to leave?”

  “Mum, I like working with the children. If things can get sorted, I won’t give up, but I feel I can’t go back to college, ever again.”

  Oh, son, I was in awe of you then. I still am.

  Finally, he relaxed, and made his way to bed, knowing we were going to fight for his right to be treated fairly, to have the same chances as any other student! For the first time in weeks, he even slept!

  We had fought similar battles for Dale in the past and won, but this one was to be our ultimate crusade. Facing another war, we would need new armour, fresh defences. Whilst our fight was for our son, we knew that our eventual victory – and we never doubted that we would win – would be not just for him, but for the waiting, deserving masses out there, all those with improved diagnoses and the benefit of condition-specific education. This was huge. What we could not see was what the three years of combat would do to Dale.

  All that was the future. We had to deal with the present. As Dale was considered Unsatisfactory in some areas, we understood that he would be moved to another nursery. We all felt that a change would work. The prospect didn’t worry him, as he was aware of other HNC students in a similar position – it had helped improve their practice, and they had qualified, successfully. Yet . . .

  “We recommend that Dale remains at Glynhill.”

  That thud again. How much more was he to face? It seemed to have been with him forever, obstacle after obstacle, unfair punch upon punch. Like over 40 per cent of autistic children today{1}, Dale had endured the torment of bullying at school. When would it stop?

  These early adult months battered his mental health, his confidence and self-esteem to an all-time low. It was time to see our GP, Roddy Grose. He had a good understanding of autism and great empathy. Dale was signed off for a month, recognising that his future was in the balance.

  Dale and I met with Anna, of Prospects, to discuss how to move forward. I was saddened to learn that his experience was quite typical. She had done her homework. The college staff had indeed received copies of the Motherwell adjustments: “Yes, we do have a copy of Dale’s Motherwell Report, and staff are aware of his requirements.”

  Anna understood the extreme delicacy of Dale’s emotional state. She arranged to meet us informally at Prospects, under the guise of a casual lunch and chat. It worked. He relaxed, as she reinforced what we had already put in place. A sandwich, and yes, that cup of tea on, I saw Dale’s determination, his conviction that he was not to be beaten, to return. Thank God!

  Anna outlined the option of moving Dale to another college, while ensuring all adjustments were implemented. Prospects could provide a college support person who would be there throughout the day, including at break times; he would have someone who understood his anxieties and he wouldn’t be isolated in his new environment. This support mechanism had worked very successfully for other students in similar situations. However, as Dale was halfway through his course, we needed to address what had actually occurred, and we needed to investigate the possibility of completing his course at Duncan Currie as an Open Learning student.

  In this format, Dale would study at home for the entire course, which would be supplied in manuals. He would also access tutor support. Ironically, the entire course could be made available to OL students in a straightforward format – the very format he hadn’t accessed, in line with his DDA adjustments, when he attended that same college!

  For what seemed the hundredth time in a lifetime of composing fighting letters, we were once again taking days to perfect that all-important letter for Dale’s future. Parenting a child or adult with autism is a sufficiently demanding task, but ask any of those parents to try to count the desperate hours spent on computers, researching and learning about their children’s rights, the days and nights sweating over letters, possibilities, impossibilities, hopes – well, ask them! There’s no way any of us can quantify that.

  We had sheet after sheet of notes spread out on the table, comparing, cross-referencing, contemplating, comparing again. You name it, we reckoned we’d done it. That was until we came down one morning to find Amy had already laid all the notes out on the floor in the shape of a horse. Yes, a very large horse. Luckily, we found them before Thomas did. Sometimes life didn’t need her creative input.

  In addition to Anna and Prospects, I spent ages on the phone to the Equality and Disability Rights Commission for guidance on what to include in our letter. However raw our feelings, it had to be the most professional letter possible. We forced points from the DDA. This wasn’t Dale’s failure, but the college’s failure: “To make reasonable adjustments”, “[Dale] . . . should not be treated less favourably because he has a disability.” We quoted the college’s “Disability Equality Duty 2005”. The college staff were to endeavour to: “Eliminate harassment of disabled persons that is related to their disability”, “Take steps to take account of disabled persons’ disabilities, even where that involves treating disabled persons . . . more favourably than others.”

  While we waited to hear about the outcome of our efforts, Dale continued his work with Barnardo’s. He attended a course in March, giving him the skills to carry out emergency life support. He had possibly acquired superior skills to his student peers, because of the intensive training given by Barnardo’s and Prospects. Sadly, no one at the col
lege ever acknowledged these assets. Undoubtedly, though, the children and their parents managed to see Dale’s unique qualities.

  On 13 March, we received a reply from the college vice principal, requesting that we meet with the Director of Business and Customer Relations. On the appointed day, Dale was very worried, despite our support. Whatever was not happening for Jamie and me at home at the time, there was no question. We were together on this. We were Dale’s parents, and on this, if increasingly on so little else, we were a unit and we were not about to be shaken. We were taken into a grand office suite on the top floor. There were no other staff present; we three sat together on the sofa, with the director across from us, alone on another chair. He began by emphasising to Dale how sorry he was for the situation. Dale tried his best to speak and to acknowledge his apology, but his anxiety was all too evident, his voice was shaking and his eyes were blinking furiously. The apology was lost on all of us. The Director launched into a speech reiterating how professional his staff were . . . Enough!

  “If your staff are so professional, why didn’t they implement Dale’s adjustments, and we wouldn’t be sitting here now?”

  His response was worthy of any politician. Skirting around the facts, he repeated, endlessly, that his staff were professional, always. Conceding that we were getting nowhere, as he jotted down notes, I asked, “Why didn’t the college apply for the extra human support Dale was to receive?”

  No one could have anticipated the reply which I can recall: “We didn’t think anyone would have taken the job.”

  “At twenty-five pounds an hour, you’re telling us that a newly qualified unemployed HNC person wouldn’t have grabbed the opportunity?”