When my daughter was six her school introduced a focus on attributes which they believed would help children to become better learners. There were five or six in total; I don’t recall them all but I do remember Perseverance and Resilience. The classroom walls were decorated with images and messages for the children: Have you tried your best today? Can you work it out another way? If you don’t solve it first time, persevere.
My daughter paid little attention to these exhortations but I was fascinated and horrified. Persevere wasn’t a word I had used much myself as a child but in adulthood I’d heard a variant of it more often than I cared. My son, I was told during his autism diagnosis, displayed perseverative behaviours. This, I discovered, referred to the tendency to do things repeatedly, or to become trapped in a sequence of rituals and unable to break the pattern. So I was fascinated that this root word Persevere, which I now associated with autism, was displayed with such enthusiasm on my daughter’s classroom walls.
And horrified? Because qualities like ‘perseverance’ and ‘resilience’ , while worthy, seemed to me to be things which grew from adversity and struggle. I wasn’t sure that I wanted my six year old to have to develop such attributes quite yet. And I wasn’t sure, either, that they were qualities which could be drawn out through instruction – we can’t tell someone to be resilient can we? Isn’t this something we learn through experience?
Recently I’ve been writing posts reflecting on early intervention in autism and whether or not it made any difference to Dylan. As part of that series I had planned to discuss dietary interventions this week. However, unfolding events presented a more pressing focus. ‘There’s a blackbird in this’, I said to my osteopath, telling her what had happened.
I set myself the rule when I started this blog that I would only write posts which had something to say. That is to say, I wanted to share reflections on learning rather than simply describing my experiences. For me, the purpose of the blog is to engage in transformational thinking; making connections and associations between different phenomena, conjuring with the evidence to see something in a new light. This, I think, is what poets do as part of their writing practice and the habit of it influences my parenting of Dylan.
I think this is why so far I haven’t posted on the topic which triggered my setting up the blog in the first place. I could share practical information about transition to adult services, and describe some of the struggles which Dylan and I have had, but until I’ve found a fresh way of looking at these experiences I am not sure how helpful sharing them would be. I’m saying this as a prelude to my summary of the week’s unfolding events; I need to give some information about transition, but don’t want to get too much into the detail of it because I want to stay focused on that blackbird.
In the UK, adult autism provision draws on three funding streams: Health, Education and Social Care. Some people are assessed as requiring a combination of social care and health while others qualify for only social care (to different degrees, depending on an assessment). All young people with a Statement of Special Educational Need (SEN), however, are entitled to 0-25 years education provision. Many adults with an autism diagnosis, and all those with a learning disability which is identified on a Statement, are therefore in theory entitled to education – though in practice may not be receiving this if the Local Authority doesn’t have any to offer and refuses to fund out-of-authority provision.
As the mother of a young man who is at the ‘severe’ end of the autism spectrum, and who also has a ‘severe learning disability’ and ‘severe communication impairment’ identified in his statement of SEN, I have spent the last four years campaigning for provision for Dylan within all three funding streams. I started this process while Dylan was still at school and for the last 12 months have thought of little else. Dylan left school in July 2013 and nine months later he is still receiving only interim social care. I will write more about this when I’ve got something other than frustrated descriptions of the process to offer; I give this summary only as background for this week’s post.
The Wooden Stool
I remember one of the doctors in my college Health Centre telling me that life is like a wooden stool. How we feel, he said, depends on our health, our work and our relationships. He likened those three factors to the legs of a wooden stool, arguing that if just one of those legs were broken we would be unstable. I’ve remembered his metaphor of the wooden stool over the years. Steiner philosophy also has a three-fold maxim about health; we must be thinking, feeling and willing, Rudolf Steiner argued, to feel fully alive. Recently, I have come to think of the three strands of health, social care and education as Dylan’s wooden stool.
Stand On One Leg (and touch your nose)
The Continuing Health Care assessment of Dylan for which I had been waiting for over two years was finally scheduled. I have been chasing this since January 2012. That sounds incredible I know but I’ve just checked the date. To even qualify for this assessment you have to first get through a diagnostic test, which is completed by a social worker. Dylan’s diagnostic, which was done by a social worker who had only met him briefly, resulted in him not being referred for assessment initially. I thought the social worker had under-assessed Dylan’s needs in the communication domain and complained, as a result of which Dylan was promised a full assessment.
Imagine my dismay when I realised, last week, that the appointment I had finally secured was not in fact for a full assessment but for a repeat of the diagnostic – and, again, with a social worker and nurse assessor who had not met Dylan. Imagine, too, my despair when parental and professional (Speech and Language Therapist and Occupational Therapist) judgements were over-ruled at the meeting. The same scores were entered as before. So a young man with no functional language – who doesn’t sign or speak and who cannot ask for the toilet, say he feels unwell or tell us what he wants – has only moderate communication needs and doesn’t qualify even for assessment.
Nine months after he left school, Dylan still has no education provision; he spends 5.5 hours a week at a city farm which he enjoys and which I’m promised will be the basis for his education. However, we are a very long way from the promise; it is not yet ‘education’ and it is not enough. Even if one day it becomes those things, the logistics of supporting Dylan to the setting are such that I could not continue to do this while working full time. This month, my final attempt to find a way of working while supporting Dylan was thwarted when a local provider refused to even assess him.
Stool On Three Legs Please
While I’ve been battling for education and health funding for Dylan he has been on an interim social care budget. Dylan’s level of need is high (he requires 1:1 support and 2:1 support in some contexts) and this is required for five days a week while I work. The social care budget alone isn’t sufficient or adequate to meet Dylan’s needs but that is what we’ve been managing on since Dylan left school. Imagine my alarm and anxiety when, without warning or explanation, Dylan’s regular payment reduced this month from its usual amount to only £158.86. To put this in context, day care costs £160.00. So that monthly payment will not last a day.
I felt disappointment and anger after the continuing health assessment. I was frustrated when the local education provider refused to assess Dylan. When Dylan’s regular payment wasn’t made, and repeated attempts to find out why went unanswered, I felt hopeless. I felt like a six year old struggling for an answer.
I can’t do this it’s too hard.
I give up.
What’s the point? I’ve tried everything I can think of.
It won’t make any difference.
Around the Table
I am not alone. There are other families in equally difficult and worse situations than myself and Dylan. In a strange way, knowing this helps. There is a sense of support and community. Last week another parent organised a meeting for anyone in the city who was going through transition and feeling anxious or unsupported or confused. I suppose we were a self-selecting group in that people who are happy had no reason to attend, but even so we were a table of woe.
Somebody reported having called the duty social worker during a weekend for support with a crisis situation; their call wasn’t returned until Monday morning. One autistic adult was in supported living accommodation but with no access to activities. Another school leaver was in unsuitable accommodation. None of our children were receiving adult education. Some of us had received carers’ assessments, some of us were without support. Some of us were desperately in need of respite. We have all managed for 20 years or more and are still trying our best to secure resources and support for our adult children.
I thought we all seemed exhausted, frustrated and anxious but also passionate, caring and committed. All of those descriptions – exhausted, frustrated, anxious, passionate, caring, committed – could equally be applied to professionals. Educators, health care professionals and social workers share these things with us. Parents do realise this I think; it is the system which is not fit for purpose, not the professionals who work within it.
The events of last week reminded me that, as well as the attributes listed above, parents of autistic children need perseverance and resilience in abundance. In the face of scarce resources, inadequate provision and poor support, we have to persevere with our questions, requests and demands for provision if we are to support our children into adulthood – and we have to be resilient when we get knocked back, again and again.
I wrote the poem below when Dylan was three years old. It dates from a time when I was working on an intensive home education programme with him. I was going to include it in my post about early education intervention; actually, I was going to include it as an example of what I wouldn’t do with hindsight, if I had my time over again, because it describes me making efforts to teach Dylan things which I now think should not have been a priority. I have very vivid memories of sitting at his blue plastic table with him, working in ten minute bursts through the day. It wasn’t an approach I would recommend now.
I’ll come back to that when I return to my posts on early intervention. What interests me about the poem here is the resilience of that blackbird. I don’t think I realised, when I wrote it, that the poem was about resilience; that feels like something I only really understood this week.
I have broken things down simply.
With the patience of one hundred pictures,
the silent scribe of my hands in air,
through the range of my voice,
the tableaux of gesture and mime,
I have repeated them again and again.
Today, after twenty-two weeks
of trying to teach him that two follows
one, how to curl his fingers
round a pen and shape his lips to oo
and mm, he sits at the table rocking –
dangles his hands before his face,
eyes glazed, while I cry.
Perhaps we will call it a day –
go out back to where the blackbird
is sounding the urgent tchich tchich tchich
of her alarm, keeping our cat at bay,
protecting her nestlings from a horror
she could not have conceived of
when the eggs were laid.
It is her persistence I admire,
the way she never lets up.
How fearless she is, upon the fence,
prepared to come within a pounce’s breath.
She knows how to live the slim chance,
instinct unswayed by poor odds, the long shot.
Blackbird appeared again in my most recent book – not in relation to autism, this time, but in connection with the end of a love affair. Reading the poem now I see that, once again, I invest her with the quality of resilience. As the affair ends, the narrator exhorts:
More than simply resilient, my blackbird is optimistic and rejoicing, even in the face of adversity. As I noted above, I try to keep the blog as a transformative space because that works for me and Dylan. That does not, however, mean that it is a sanitised space. Reflecting on my tough couple of weeks through the blog has helped me to connect up these resilient threads and understand the symbolism of Blackbird in my work.
Elizabeth Barrett (2005) ‘Blackbird’ in The Bat Detector, Wrecking Ball Press
Elizabeth Barrett (2010) ‘Bird Evolution’ in A Dart of Green and Blue, Arc Publications