I am not a single mother, I am not on social services, I have a good husband and a pretty good home. I am classified as white British and have recently ticked all the boxes in the Times confirming I am middle class (I hate those pointless surveys). I speak with an English accent but it's not plummy. I didn't pick up any Australian when I lived there apart from beginning my sentences with 'Look....' but I've got out of that habit now. I did quite like using this phrase and other words like 'this arvo...'.ie afternoon. The ending of a word is basically dropped and replaced with 'o' on the end for example 'the salvo' - 'the salvation army', 'Vinnies' for St Vincent de Paul, 'Rego' for registratrion. For some reason this really amused my husband and me and we would be entertained at how many words were totally obliterated into Aussie terminology but the they got away with it in their very relaxed and irreverent style.
I have had a good education and appreciate the good things in life including the arts; theatre, architecture, dance etc. I also appreciate mundane things like Coronation Street - do not ask but believe it or not my husband got me into that one and he's the last person I thought would ever watch Corrie.
The thought of a social worker and the whole bureaucracy that comes with having a child with severe autism never crossed my mind. I do remember in 2003 watching a drama preview about a mother with an autistic child with Juliet Stevenson* and then thinking it would be too painful to watch so never bothered. Little did I know I would soon be entering a similar world with a strong belief that vaccinations did contribute towards my son's autism. I witnessed how after one particular jab administered by a GP the lights in Joel's eyes literally went out - he'd had the MMR and then I firmly believe that the additional chicken pox jab pushed him over into his autism and I know because I'm his mother. This was also backed up by a well respected paediatrician in North Sydney who started Joel off on the process of healing his gut which in turn heals the brain through biomedical intervention.
This was so scary as while the Medical profession at large were telling us that there was no correllation between the jab and autism I knew in my gut that there was. Even worse was the guilt that I felt over this matter as I really didn't want to register that this could have damaged my son. So I carried on and hoped it was just my imagination but if I've learnt anything on this path it is always to trust one's instincts.
After Joel's diagnosis when he was nearly 3 my world turned upside down but that wasn't to say it wasn't completely chaotic because after Joel's birth I was living on a roller coaster and the ordinary life had turned extraordinary in minutes after his continual screaming and challening behaviors wouldn't subside. There really wasn't anything the medical world could offer us apart from sympathetic looks and a few special needs play groups. Many people would enter my life in various shapes and forms, usually with big doughy eyes feeling sorry for me but not really offering any practical help. Our first sense of taking a form of ownership was when we until we retained some ABA tutors to work with Joel. This was my biggest relief since acknowledging that Joel had autism as it was something tangible that was actually being done to directly address all his behaviours in a uniquely positive and constructive fashion.
So when I returned to England in 2009 I realised if I was going to get any help with Joel we needed a social worker. This was something I was apprehensive of as naively I thought they were for deprived families and families with social and abuse problems initially and had no idea that they were to help families like mine too.
I was staying at my sisters wonderful country home in her converted stable with little Holly and Joel and I was pregnant. Pregnant and in a stable sounds quite romantic really but it was far from it. I was exhausted and wondering where Joel would go to school as he was truly regressing as we had dropped all therapy and biomedical intervention which was helping in Sydney. He was put in the nearest special needs school where they had little idea about autism to get his statement until we could find a suitable school for him. This would involve meetings with East Sussex Special Education Needs department who would later pan the idea of Joel going to 'Step by Step' school for children with autism hence our move from East Sussex to West Sussex about a year and a half later.
When a trainee social worker rocked up half shaved and looking like he could do with a wash - I think he liked the rock star look. He was immediately impressed with the house, setting and the car - a maserati which Joel had a tendency to climb all over (my brother in law understandably was not impressed with this habit of Joels). I had to explain that this wasn't my home or my possessions and that we were staying here because we'd just got back from Sydney and were trying to sell our house in Australia so were saving on paying a mortgage in Sydney and rent in the UK. We didn't even have a car as that was on its way to us on a ship somewhere. That seemed to go right over his head and he wrote in his notes about Joel - 'well dressed, nice haircut, something about his appearance which was well kept etc' I really didn't understand at the time but now I think back I was coming up against middle class prejudice. Joel was signed off his books with a few leaflets thrown in and a 'nice to meet you good luck and you're on your own' . This was put down to the fact I didn't tick any emergency boxes to him. I was married, well spoken and looked like I was managing pretty well in my surroundings. I wasn't offered any financial support and should have been offered something called direct payments which are for all children with a disability especially at the level of Joel's high needs.
To cut a long story short Jake actually found out about direct payments through the author
Charlotte Moore who lived in the area and who has two children with autism. We found out we were entitled to this to get a carer to help out with Joel for a few hours or more a week and have been knocking down doors ever since. I don't know what a parent with a child with autism has to do when they are feeling like they can't cope - you occassionally read about tragic stories involving parents and their autistic children. Like the mother who jumped off Clifton Suspension Bridge with her autistic child. I doubt she was getting much help. I wasn't getting much help until recently where I was at my wits end and my mother in law called the current social worker and spelt it out to him that if I didn't get help soon the whole family was going to go under. From late September I got a night a week off where Joel goes for what's known as 'short breaks' in a small house in Crawley and it's great for him and great for us as a family. They have recently given one more night so that we can actually sleep at night and have our evenings. Joel has a tendency to go to bed very late and you spend lots of nights telling him to go back to bed and this can drain the resources.
But the question I want to ask is this. What do you have to actually do or say to a social worker or to the system to get the necessary help? I don't think it's straightforward. There is no rule book. Each county works differently. Each parent has their own battle and is on their own. They have to find their own way and some slip through the net. I am not surprised as I could easily have slipped through the net and probably looked like a Stepford housewife in their eyes. One friend I know who has a son with autism who is older than Joel and so she's been in the 'system' longer and pointed it out. "Middle class prejudice". I get it. Can it be actually harder for a person like me to get more help for my son as opposed to a mother in a different demographic?
Everything to 'the system' on the outside looked good and even when I told them I was struggling it still took months and months to get the right help and this is still ongoing. We are getting there but it's like moving a mountain. We moved the earth to get Joel into Step by Step school. We moved to a town we don't know. To a county we don't know (which we like very much). We just had to do it for our boy. Because he is our precious boy who drives us insane but we love him dearly. Thank God we have done this together as I couldn't have done it on my own.
I have no idea how the system works, but I find it incredible to believe that it is actually harder to get the help if you have a husband, nice house and all the rest of the trimmings when Joel's needs are equal to that of a child with severe autism where he needs one on one help at all times. This should have nothing to do with class. It's a need and it should be met and I shouldn't be made to feel guilty about it. It's taken me a long time to realise this. We'll keep going and I pray that other parents get the right help too. Does it really have to be so drastic ? It was for me. Maybe my case is different but I know there are complicated cases going on all over this country with children with autism in the families. I hope they are supported before it's too late. I am totally serious. A reminder of this comes from 14 year old Mary, a sibling who knows from experience that 'autism is no game'. This is big and it needs to be dealt with properly with ongoing support from social care. Not after reading about it in the paper.
* Taken from Wikepedia
She has been a critic of the MMR vaccine, as well as a supporter of the discredited[13] Andrew Wakefield, whose research was based on a sample of twelve children.[14] In 2003, she appeared as the campaigning mother of an autistic child, alongside Hugh Bonneville (as Wakefield) in the 90-minute drama, Hear the Silence, based on this issue, while Stevenson vocally joined the campaign against the MMR vaccine.[15] Wakefield's work has since been discredited;[13] and the articles against the MMR vaccine recanted by The Lancet.[16]
No comments:
Post a Comment