Speaking Out: Disability and Disaffection in 21st Century Ireland.
A review of ongoing research into difficulties encountered by parents of disabled children in relation to systems of service and welfare provision.
Context:
In February, 2010, I began publishing a series of online articles entitled ‘Letters from the Frontline of Autism’1. These articles arose from a suggestion made by Kathy Sinnott, ex-MEP and disability campaigner, that I write publicly about my experiences of raising and home-educating my sixteen-year-old autistic son. She felt this would be useful to other parents of autistic children as her support foundation, the Hope Project, was regularly contacted by families who were experiencing difficulties similar to ours.
The difficulties that other parents were experiencing, like ours, fell into two camps. Firstly, they faced the problem of dealing with the challenges of their child’s condition but secondly, these were being compounded by the often overwhelming stresses imposed in negotiating the very systems of service and welfare provisions that were ostensibly there to help them.
When I began writing ‘Letters from the Frontline....’ I had intended to cover basic strategies for dealing and working with autism that had been successful for us. However, I quickly realised that the positive perspectives we had formulated were a direct response to the litany of very stressful and negative experiences we had undergone on the way. I couldn’t realistically explore one without the other and so, taking one issue at a time, I began to write.
My early articles covered the mismatch of autism, particularly severe autism, with existing provisions of service and education, the importance of seeing things through the eyes of the autistic child and the questioning of the normality of ‘normal’ life. Responses began to flood in from other parents.
‘Thank you, your articles are extremely accurate.’
‘Thank you for saying what I don’t dare to say.’
‘You are right every time in your autism bulletins.’
‘I laugh and cry when I read them, they are so accurate.’
‘You are speaking for so many’.
But it wasn’t until I wrote an article entitled ‘The Cloak of Invisibility’2 that things really took off. In this article I chronicled an experience of inconsiderate professional practice and raised the issue of assessments regularly being made of the behaviour of children and the functioning of parents which were entirely devoid of the key variable of the professional themselves.
A howl of anguish and anger went up and e-mails came in containing accounts of experiences far worse than ours and with consequent comments that were both heartfelt and damning.
Throughout the whole of my son’s life I felt that we must have been particularly unlucky in our negative encounters. Suddenly I realised that we were most certainly not alone. But it was one response in particular that impelled me to do something constructive with the information that was coming in to me. In response to ‘The Cloak of Invisibility’3 I received an e-mail from Seamus Greene, parent of an adult daughter with Down Syndrome and Director of the National Parents and Siblings Association. It read...
‘This is very good and painfully accurate.’
I rang Seamus and we had a lengthy chat. We found that we had much in common, both in our working backgrounds and in the difficulties we had encountered regarding our children. I thought long and hard about all that I was hearing and about what I, as just one time-poor parent, could do to make a difference.
Prior to my autistic son’s birth I had been a researcher/lecturer in Education and Social Policy in the U.K and I decided to utilise my skills by putting out an offer to parents, stating that if they would like to formally contribute their experiences and views as research data I would process this and publish it at a non-profit cost.
I asked Seamus if the NPSA would endorse and support this and he wholeheartedly agreed. He also put me in touch with Dr. Darren Chadwick, Research Fellow at the National Institute for Intellectual Disability, Trinity College, Dublin who was extremely helpful and supportive in sending me research articles and NIID research publications and he continues to offer support with this project.
I then put an item onto my website outlining my proposal and asking for contributions, Seamus mobilised contacts on my behalf and I circulated the idea on my own personal network. As a result I acquired a list of approximately eighty possible contributors who were situated all around the country. The majority were parents of autistic children of all ages but other disabilities were represented also, some contributors were parents who were also disability-related professionals and a few volunteers were just professionals in the field.
My plan was to undertake a qualitative rather than quantitative project whereby I would gather data via extended interviews of at least one hour’s duration but possibly more and then to use established methods of ethnographic analysis to process and present the data according to salient themes and trends.
To date I have completed twenty-six interviews and am pausing to produce this review for two reasons. Firstly, because of an invitation extended to me to give a presentation at a staff training day of our local service provider and secondly because I thought it would be of ongoing interest to readers of ‘Letters from the Frontline of Autism’. The following sections deal respectively with emergent themes and trends and with hypotheses for change, both of which I will explore further as the project progresses.
The writing of this review coincides with the publication of the ‘Family Voices’3 survey by the National Institute for Intellectual Disability at Trinity College, Dublin and also with the launch of a research project, co-ordinated by the West Cork Carers’ Support Group, into the experiences and views of Carers. Both of these surveys employ large quantities of data obtained via questionnaires, although both supplement these to various degrees with focus group input and personal comment respectively.
I am not employing the use of questionnaires in this project because I feel that they rarely give adequate scope for reflection of the subtlety and complexity of respondents’ situations and opinions. There are specific examples of conflicting data in the NIID survey that illustrate this point, as does my recent experience of being a respondent to the WCCSG project.
My research differs further from both of these projects in that my contributors have volunteered their data specifically because of their concerns regarding negative and traumatic experience, hence the title ‘Disability and Disaffection’.
The NIID survey showed significant numbers of people nationwide who had major concerns, with 36% of respondents expressing the fear that complaining would result in adverse consequences and 66% expressing the feeling that services were difficult to obtain unless fought for. These are unduly high figures and I feel that my project fills a gap by giving a specific voice to those whose adverse experiences have thus far been represented quantitatively but not qualitatively.
As this project has turned out to be a more extensive piece of work than I had originally anticipated I aim to complete it by mid-2011.
The following sections deal respectively with emergent themes and trends and with hypotheses for change, all of which I will explore further as this project progresses.
Emergent Themes and Trends.
To date I have identified five key areas that parents are experiencing as problematic.
1. Fear and Taboos – the effect of Irish cultural taboos on ‘speaking out’ and the fear of adverse consequences in doing so.
2. A Paradigm of Mismatch – a pervasive disjoint between professional perspectives and grass-roots experience.
3. A Culture of Disregard – the dynamics of disregard and bullying in professional/parental interactions.
4. The System – the acute stresses caused by having to engage with the bureaucracies inherent in State departments such as Education, Social Protection and the HSE.
5. Loss of Normalcy – Ways in which service provision unwittingly subjectifies and pathologises the families of the disabled.
1. Fear and Taboos.
The people who are contributing to this project are those who have the courage to speak out about their negative experiences but many are doing so with trepidation and only under reassurance that all contributors will be anonymous and that locations will not be revealed. Some who originally contacted me later withdrew because they felt anxious that describing the specifics of their situation could identify them. Others have said that they support the project and admire those taking part but would be afraid to do so themselves.
Discussing this further reveals two main reasons for this extraordinarily high level of anxiety.
a) Fear of ‘consequences’... in the form of perceived possibility of loss of either services or benefits or adverse treatment of their family member who is in receipt of services.
This seems to be an extraordinary indictment of the culture of a twenty-first century developed country but this fear is very pervasive and is frequently cited as having a basis in fact.........
‘It is real, it does happen, but it’s very, very difficult to prove it. You only find out when you realise that your child’s (respite) hours have been cut when other, ‘good’ parents haven’t.’
‘I kept speaking up. He was put into a cerebral palsy unit but he was clearly autistic. I wanted to move him but I was told ‘If you do you’ll get no services.’ I was really afraid, devastated, frightened.’
‘Your child suffers if you speak up. We took the case to court to get what he needed. We were told to ‘settle out of court’ or lose your house.’
‘At the meeting the Principal still said my (autistic) son was not entitled to the SNA. But S had rung the NCSE earlier that morning on our behalf and it showed on their records that my son was down as having the SNA. She was his SNA and the Principal was using her for other duties around the school, not for him. There was war because we now had an independent witness to prove this. My daughter was also in the same school and after this she came home every day saying the Principal was shouting at her and picking on her, even though she wasn’t doing anything. She had a breakdown, she started to get panic attacks, she couldn’t eat. When I went in to complain it got worse. I had to move both the children to another school.’
‘There have been many, many times that I wanted to speak my mind to our service provider but I don’t, because we need the services.’
‘It does happen (loss of services). You’ll notice that after you speak up there’ll be plenty of days where all of a sudden they’ll be saying they can’t take her because she’s got a cough or a snuffle. It’s things you can’t prove but you’ll notice it happening if you dare to speak up.’
‘I always weigh my words carefully. I don’t want it to come back on A (daughter in services).’
This kind of fear is so pervasive across all areas of the country that it can only be concluded as having a genuine cultural basis. I will be exploring this in greater depth in my final report.
b) Cultural and community taboos on ‘speaking out’.
Many people cited a powerful cultural taboo against ‘speaking out’ which is enforced at all social levels but particularly within local communities and even within families.
One parent of an autistic child described it thus......
‘You have to understand that in Ireland there’s only one thing worse than the axe-murderer...and that’s the person who complains about the axe-murderer.’
Others explained in greater detail.....
‘When you speak out it rocks the boat, it frightens people. When I worked in England I couldn’t believe how open people were, they felt free to criticise or complain when something’s not good enough and they do. I think we’re only just waking up to that.’
‘Even my family think I’m a moaner, who’s always out to pick a fight with everyone. They just don’t get it. They don’t realise what it’s like to have a disabled child and all the crap that goes down. They don’t get that if you don’t speak up you’ll get nowhere. They don’t like it because it makes waves in the community and it reflects on them.’
‘You don’t do it, (speaking up) it’s the worst thing...especially in a small place. Everyone disapproves, even your family can put pressure on you. It’s very hard to speak up.’
‘It’s better to suck up than to speak up.’
3. A Paradigm of Mismatch.
One of the most pervasive difficulties that parents cited was their experience of professionals approaching the problems of their child’s disability from a theoretical and/or therapeutic perspective that did not relate to, or take into account, the reality of daily, lived experience.
This has two significant adverse consequences. Firstly, it creates ‘help that doesn’t help.’ Secondly, blame can be laid on the parents for the failure of the ‘help that doesn’t help’ leaving them angry, frustrated, undermined, pathologised and, in some cases, with their self-esteem and self-confidence very damaged. This process is compounded by the difficulties parents have in either not being listened to or having their views discounted when they try to point out and explain this disjoint.
‘D does have challenging behaviour and we do need help. But every time we go the psychologist gives us a behaviour plan. We try, we really try but we can never keep it going for more than two or three days because things happen. That’s life, we have a business, we have other children. Life is not in the behaviour plan. Then it falls apart and she says it’s because we’re not doing it properly, it’s our fault. Let her come and try.’
‘I went with a friend who had an autistic child...to her appointment with a social worker. This woman (the social worker) didn’t have a clue. She was talking to J as if his behaviour was her fault, like she was a bad mother. I’ve fought so much for my own child, I’ve no fear of speaking up. J was getting upset so I said to the social worker ‘I’m taking her outside for a break, now you look after the child.’ When we were back she was wrecked, she couldn’t cope with him either for all her talk.’
‘I have four other children, all doing well, all well-behaved, good kids. S (the youngest) is autistic. They (the HSE) said I should go on a parenting course. I am a good parent, just look at the others. It’s an insult. We don’t get the help he needs and their answer is a parenting course.’
‘They only have to do one job at a time. I have to be a teacher, a physio, a speech therapist, an O.T, a psychologist. It’s me who has to put it all into action and report back. I have no training but they’ll be only too quick to comment if something’s not getting done.’
‘I try to explain why I know what they are saying won’t work with him. They just don’t get it because they haven’t lived it.’
Certainly from my own experience of parenting a severe autistic I would have to concur that what sounds good in theory has rarely worked in practice, across a whole spectrum of issues. It seems to be the case that a more dialectic dynamic, where professionals and parents meet on equal terms to combine knowledge, it much needed.
4. A Culture of Disregard.
This is perhaps the most distressing section of all because it is drawn from numerous reported incidents of what can only be termed as disregarding and bullying behaviour by those in positions of power, authority and control. Some respondents cried when they recounted their experiences, others were clearly distressed and extremely angry.
‘He was given a place in the unit, he was the youngest child in there, very vulnerable. He was terrified, I mean really terrified. They had two young girls looking after them...they were FAS workers or something. This was supposed to be a ‘Centre of Excellence’. They said ‘Oh, he’ll be grand when you’re gone.’ The other kids hurt him, one day he was bitten. I felt they weren’t doing their job properly, they weren’t supervising properly, so one day I went in and caught them unawares. They were standing chatting with their backs to the kids so I complained. A couple of days later I passed them in the street and they spat on me...openly, in the street, they spat on me.’
‘When our daughter was four months old we were told by the consultant ‘In my 37 years as a paediatrician I have encountered many parents like you, your child is fine’...at eighteen months she was diagnosed with a rare chromosomal disorder.
‘Driving in the car was impossible, absolutely impossible because he was so autistic he wouldn’t keep still. We really needed some kind of restraint so I contacted the Health Board to request one but by then I had complained about a number of things. I had to explain why I needed one, then there was sniggering in the background and the reply was ‘Well if he’s that difficult, don’t travel then.’
‘They treat people with contempt. I wouldn’t wish our journey on anyone. It’s like being in a guerrilla war. They tortured us, and I don’t use that word lightly, the stress of continually fighting for your kids and the way you are treated is disgusting. My husband died at 37. He didn’t drink or smoke and he wasn’t overweight. Stress killed him, they killed him.’
‘Three years ago my wife had a heart attack. There was no blood clot or cholesterol problem, just stress brought on by the continual battling and not being listened to.’
‘ “You are a fussy young mother, now go home and enjoy your baby” that’s what he (the consultant) said. Six months later our boy was diagnosed with multiple problems.’
‘Our daughter was getting on the bus going away from her Day Centre instead of to it. We had explained to them very clearly why she was unhappy but they couldn’t seem to consider the possibility that something was wrong with them. Then a psychologist who was a friend of mine took me aside and warned me that in meetings it was being said that we, the parents, must be at fault, that something must be wrong at home. We would never have known if he hadn’t told us. She went to another centre and was perfectly happy.’
My own son’s lifetime has been littered with such experiences and I intend to include some of them in my report but they will be clearly identified as such. I’ll give just one example here that occurred a year or so after making the decision to home-educate my son at the age of ten due to the catastrophic effect that his inability to cope with school placement had on him. Despite the fact that a variety of professional reports catalogued and supported this, despite the fact that I am an ex-Special Needs teacher and that my son was making more progress at home than he had ever made at school, a NEPS psychologist told me quite unpleasantly that my son should be in school because...
‘It’s got to be better than being at home all day with Mammy.’
These kinds of behaviours signify something seriously amiss at both professional and personal levels and really require research specific to this one area to explore and analyse it further.
5. The System.
By which I mean the bureaucracies that service disability services and benefits......
This area is a cosmic black hole of wasted time, wasted energy and intense frustration and anger for so many parents. The stress that negotiating ‘the system’ causes is almost impossible to adequately describe and the toll it takes on people’s health and wellbeing is an outrage, especially given the demands that parents of the disabled are already under.
Parents attest to years of unreturned phone calls, unacknowledged letters, interminable delays, denials and rejections of their applications for the services and benefits to which they and their children are entitled to, forcing them into further battles and appeals and incredible levels of inefficiency, arrogance and rudeness.
There is no better testimony to this than parent Lisa Domican’s ‘ How to Get Ahead in the Business of Getting a Service’ ( included at the end of this review ), reading of which I would really recommend to anyone who wants an insight into what parents have to put up with.
It’s worth noting that a number of parents have stated that they have found a dramatic improvement in politeness and efficiency from public servants consequent to government pay cuts, which probably doesn’t require much further analysis.
6. The Loss of Normalcy.
It is true that disability in a family makes it more difficult to live in the same way that families without disability do and there is, for many people, a very real sense of loss regarding this. What is not recognized are the ways in which authoritative perspectives and approaches to disability can unwittingly deprive families of ‘normalcy’, a subtle process which turns ‘a family with a disabled person in it’ into ‘a disabled family’....there’s a big difference. This is a process which many people express a sense of unease about but which they find difficult to identify in words.
Clearly no professional body or individual professional seeks to do anything other than help their clients. The problem appears to lie in the unequal power dynamic that pervades professional/parental processes. The power of professionals to ‘set the terms’ of disability creates a framework within which families have to fit if they wish to avail of services. This process positions both the disabled and their families as ‘subjects’ rather than as autonomous individuals and this is compounded further by a systemic tendency to pathologise not only the disabled but, by association, their families also.
Despite terminology that appears to enshrine the rights of the disabled and their families to determine their own paths and patterns through services, their lived experience is still one of having agendas set for them by professionals who ‘know best’. This then creates a problem of having to contest this external determination if they wish to assert their own sense of autonomy and ‘normalcy’. As one parent put it...
‘We are always on the back foot.’
One of the most effective ways to illustrate this is to compare some of the processes and practices that surround disability to the lives of ‘normal’ families, via the accounts of parents.
‘When D got to a certain age there was just a presumption that she would go to respite. No-one asked if we wanted or needed it. No-one asked if it would be good for her, she was just booked in. It was like ‘Okay, this is what you do next.’ We didn’t want her to go, she wasn’t a problem at home and it would have upset her dreadfully to be ‘sent away’. Why would we? No-one suggests we send the other ‘normal’ siblings away.’
This experience of being ‘subjects’ who are processed through a predetermined framework is not unusual and the best insight into the way this impacts on people’s lives is to turn it around and look more closely at this parent’s closing comment.
‘If State professionals put pressure on the parents of ‘normal’ children to place them in care facilities from a young age there would be an outcry, and quite rightly so.’
This is just one example but it illustrates a principle that underlies practices and processes which pathologise subjects and remove them from realms of ‘normalcy’.
If individualised or family-centred service plans are entered into via this prevailing dynamic there will always be a disjoint between the terminology and the practice and it can be a real no-win situation for parents. If they accede to pre-determined processing then they will inevitably experience both subjectification and pathologisation in varying degrees. But if they contest this they find themselves subjectified and pathologised anyway, but in other, negative terms.
‘I wanted what I could see my son needed, not what we were being pressured into putting him through. The response to my challenging this was an offer of counselling – to help me ‘accept’ my son’s condition. I knew exactly what his condition was and what he needed.’
‘There are a lot of different aspects to C’s condition. But when she was small we were on such a trail around different professionals that she had no normal life. My husband and I put our foot down and said ‘enough’. We wanted just one or two professionals and they could always refer us on to others if necessary. We’ve been the ‘difficult’ family ever since. But what they don’t get is that we are normal. We are a normal family with a disabled person in it. It has always been a battle to maintain that.’
This pathologising process is well-documented in the field of Disability Studies, particularly by writers and academics who are either disabled or autistic themselves. At the heart of the problem is the disjoint that exists between what professionals are trained to believe is pertinent to disability and what the lived experience really is.
The autobiographical works of high-functioning autistic Donna Williams illustrate this point as does this quote from physically disabled Disability Studies academic, Mike Oliver.
‘When I began to read some of the things that able-bodied academics, researchers and professionals had written, and still write, about impairment and disability, I was and remain staggered at how little it related to my own experience or, indeed, that of other disabled people I have come to know.’
‘Understanding Disability’, p.16.
Annette Silvers, in her paper ‘Disability’, states that...
‘..a hallmark of contemporary dependency systems is to disregard or dismiss the judgement of individuals who are assumed to need such systems.’
These ‘individuals’ are not just disabled people themselves, but their families also and it is into this chasm of disjoint that their ‘normalcy’ disappears.
I want to close this section with the description of an incident that was submitted by a contributing parent which, I think, illustrates perfectly the point I am making here. This parent was the parent representative at the local branch of her daughter’s service providers and attended a conference in this capacity, along with the organisation’s CEO.
‘Part of the morning’s presentations was a talk by a woman who was someone high up in the training of therapists. I could not believe what I was hearing. She clearly had no idea that there could be any parents present as it was a conference for service providers. She was so dismissive of parents. She talked about them ‘going on the internet and thinking they knew everything’, being confrontational by thinking they knew what was best for their children and she said that it would be far better if they just left professionals to get on with the job. I didn’t speak out during her talk because I was sitting next to our CEO and I knew he would be mortified if I did. But at lunchtime I went outside and she actually came up to me and spoke to me, asking what organisation I was with. I said... ‘Actually I’m your worst nightmare come true...I’m a parent.’ I then proceeded to put her straight on what having a disabled child is really about. She did make a public apology after lunch but you can see why we get treated in the ways that we do. As far as I remember she was a lecturer and so was passing her views on to others.’
HYPOTHESES FOR CHANGE.
Debates and battles over funding are eternal and never more so than in a spiralling economic crisis and I certainly wouldn’t want to write anything that would detract from the need for the adequate funding of disability services. However, I would suggest that radical improvements could be made in the formulation and implementation of services via changes to professional perspectives on disability and in the grass-roots dynamics of professional/parental interactions. These would, of course, cost nothing.
As I stated at the outset, one of the catalysts for the writing of this review was an invitation to speak at a staff training day at our local service provider. In their recently launched ‘Five Year Strategic Development Plan’ the promotion of research is cited as an ongoing goal. It would be wonderful if research became a regular part of the functioning of all institutions that deal with disability.......and where better to start than in exploring the real nitty-gritty of disability life ?
Gaia Charis, Oct.2010.
References:
1.‘Letters From the Frontline of Autism’.......
http://www.gaiacharis.com/site/index.php/disability
2. ’The Cloak Of Invisibility ’........
3.’Family Voices’........
Bibliography:
Barnes,C and Mercer,G. Exploring Disability, Polity Press, 2010.
Cresswell,J.W. Research Design:Qualitative, Quantitative and Mixed Methods Approaches. Sage, 2008.
Chadwick,D.D.et al. Family Voices:Life for Families of People with Intellectual Disabilities. N.I.I.D.,Trinity College, Dublin, 2010.
CoAction West Cork. Five Year Strategic Development Plan, 2010-2015.
Gabe,J. et al. Key Concepts in Medical Sociology. Sage, 2005.
Illich, I. et al. Disabling Professions. Marion Boyers, 1977.
Macdonald, K. The Sociology of the Professions. Sage, 1999.
Nazeer, K. Send in the Idiots, Bloomsbury, 2007.
Oliver, M. Understanding Disability:from theory to practice.Palgrave Macmillan, 2009.
Silvers, A. Disability....in A Companion to Gender Studies, Wiley-Blackwell, 2009.
Williams, D. Autism:An Inside-Out Approach. Kingsley, 1988.
'How to Get Ahead in the Business of Getting a Service'........
by Lisa Domican.
1. Buy a hard cover notebook and write the date at the top of the page every day. Carry it everywhere and write down the name, number and title of everyone you speak to in relation to services for your child. Just producing this book and asking for the name of someone you are talking to can be enough to ensure they follow through on your request.
2. Photo copy every letter, every referral and every report 10 times and store it in a portable concertina file. Bring this file and a stack of brown A4 sized envelopes to every appointment.
Do not let "I havent got a copy of the report/letter/referral" or
"Someone else has your file and they have gone home, on annual leave or locked it in a filing cabinet and taken the key home"*
be the reason you are not getting moved up the list.
When you are told this, reach into the concertina file, extract a copy of each report/referral/letter and place it in the brown A4 envelope. Write the name of the person you are talking to on the envelope, and hand it to them. Smile. Wait.
4. Use your hard cover note book and your correspondence file to support your cause.
Begin with the phone call to check who is responsible and what is the correct address. Then write to them using registered post. Keep a copy of your letter and phone them a week later to check if they recieved it.
Note this in your book. Phone them the following week to check again and check on action. If you remind them that is what they said last week you might get a little bit further along the line.
Phone calls alone will not get you anywhere, especially with regard to the Health Service. So the rule is Phone, Write and Phone Again.
5. If you are really getting the run around and not getting any correspondence back from the people you are trying to deal with; keep a record of that. Buy an old fashioned hard cover desk diary and note down, immediately every interaction you have with that office or professional, including all the times you rang and it rang out, all the times you left a message with whomever (ask how to spell their name, scares the shit out of them) and then call back next day saying that you left a message with so and so yesterday. (also scares them)
A diary that has been filled in accurately at the time of each event is a legal document.
6. Be polite, friendly and grateful when you are helped. You catch more flies with honey than vinegar. This is especially important in the current climate where the people you are dealing with have had their wages and pensions cut and may not be feeling happy themselves. They do not write state policy, they just have to implement it so don't take it out on them.
However, DO be persistent. Every time you get disheartened, go back to your little book and check who hasnt helped you yet. Then call them.
7. A door is never closed without another being opened.
If someone says they cannot help you, ask them to write a letter of support to the authority that can.
8. Wear Lipstick. Brush your hair. Don't look like a victim or when you look in the mirror you will see a victim.
If you have an important meeting to go to, get your hair done and wear the best clothes you have.
That way you will feel the equal of everyone in the room and will be treated that way.
9. Join an advocacy group and start networking. You need a sponsor to get you through this, someone who knows more about it than you and who understands the pitfalls.
Whether you are ready to identify as a member of a minority disabilty group or not, get in touch with your advocacy group, reach out to a network and start asking for help - you'll get it, I promise.
xx
The above item can be found at.....
http://irishautismaction.blogspot.com/2010/05/how-to-get-ahead-in-business-of-getting.html
Follow Lisa's observations on autism at....
http://hammie-hammiesays.blogspot.com