Autism: The loss of a son

Our 14-year-old son Chris behaves like any other teenager would; helikes to retreat to his bedroom with magazines and music and getting himto wash every day can be a bit challenging. However, along with the blueeyes and long lashes, determination and a strong sense of order, there'sa whole lot more that comes with Chris, who is severely autistic.

It's the practical problems of living with disability that neither myhusband Duncan nor I anticipated; how schizophrenic life would become aswe were forced to do different things with each of our three children:Chris, nine-year-old Jacob, who is also severely autistic, and ourdaughter, Chloe, who's eight.

It's also exhausting as we've endured endless review meetings to ensurethat educational statements (in England) and records of need (inScotland) include the co-ordinated care packages our sons needed toremain living at home.

It is truly draining enduring assessments for just a few hours respite,mulling over personal family life with strangers, and devising careplans that are superfluous before the ink has dried.

A confusing world

As well as autism, Chris has obsessive compulsive disorder. He remembersvisually, and if anything in a room is moved it upsets him and he can'tunderstand where he is or what is expected of him. He expects certainthings of certain people in particular places and can't cope if hisworld order is disturbed.

The brain takes a growth spurt at five and at 13, and there's hope thataround these landmarks speech or understanding can improve.

Unfortunately, neither Chris nor Jacob attained speech, and use acombination of Makaton sign language, picture symbols, gestures andsounds to communicate.

As a result, Chris gets frustrated by the inability of those around himto understand his basic needs, and can use violence to get a pointacross.

What I've found frustrating - and demoralising - is the lack ofjoined-up thinking and help we've encountered from many professionals inmany different disciplines. We live in a remote croft on one of theShetland Islands, which is 23 miles from the nearest town and hospital,and 15 miles from the nearest GP. I don't drive and yet the doctorrefuses to come and visit us at home, so any level of health care forChris has proved impossible to obtain.

Moreover, he has always needed one-to-one support at school but, overthe last year, he has had no permanent school base or statutory schoolhours, so his behaviour has deteriorated to the point where he needsthree-to-one support.

Consequently, we can no longer enjoy the empty Shetland beaches togetheras a family or share a take-away together in the car - moments togetherwe cherished, and memories most families take for granted.

Once your child needs such a high level of support, care packages areexpensive. If agencies don't co-ordinate packages and share budgets,it's impossible to function as a family and do the most basic of thingslike have a hair cut or do the weekly shop.

Two years ago, we moved from Essex to Voe to avoid a residentialplacement for Chris, as his special school was to close so he would havebeen boarded hundreds of miles away from us. We hoped the ShetlandIsland Council would build an education base for Chris, which would alsooffer social care, allowing him to live near enough to home toexperience the ups and downs of family life. Which, by the way, wouldhave been a cheaper option for the taxpayer.

However, after waiting almost a year for a school base and social careto materialise, we were recently forced to admit defeat and have decidedto place Chris in a residential school as the three children could nolonger go out together without support, which we were not getting. Yetat the end of 2003, we had moved 1,000 miles just so Chris could stayliving at home. Can you imagine what it's like to place the son you havefought for and loved in care? Just to achieve a co-ordinated careplan.

In fact, he has experienced so much change in how education and socialcare are delivered that he is now extremely stressed and unable to liveat home. Children like Chris, with complex needs, require clearlydefined boundaries between home, school and social care, and prompts tounderstand what is happening. However, for three months last year, Chriswas taught at home.

With no school bag, and no journey to school, it's no wonder he wasconfused or that he lashed out at a speech therapist who was trying towork with him at our dining room table as he associated this space withtask work.

Physically secure

As he has no concept of danger, Chris needs to be educated in aphysically secure environment, yet both a school base attached toAnderson High School and a voluntary residential unit at Laburnum House,near Lerwick, were closed down because of health and safety issues and alack of forward planning of emergency care beds.

Instead he has been educated at a number of different bases including ahall in a park.

Chris has had to get used to so many new accents as we have moved aroundthe UK for provision - changing areas, schools and countries - that I'msurprised he has coped for as long as he has. His siblings have paid aheavy price for a lack of co-ordinated care too. For instance, I foughtfor over a year to get Jacob a place at Market Field school inColchester, and finally won a place in 2001. However, in 2003 we had tomove because of the council's desire to board Chris.

We spent 20,000 of our own money making the property in Clactonsecure for the boys. We rarely qualified for grant aid anywhere in theUK as my husband works. On Shetland the Shetland Charitable Trustawarded a grant for fencing and strong doors, but it took so long tohave them built Chris has barely had any use of them.

Legislation never seems to protect the boys. In fact, it's individualprofessionals who have gone the extra mile to help Chris but, more oftenthan not, off the record. A social worker in Macclesfield springs tomind who made me aware of local specialist provision, and a teacher inCheshire who liaised with the medical officer to ensure Chris got aspecialist school place. Jacob's headteacher in Essex linked with socialservices to achieve respite care for Chris where other assessments hadfailed.

It is ironic that services can work together to board a child, but notshare budgets when they still live at home. As a result, Chris is nowabout to take up a place at a National Autistic Society boarding schoolin Sunderland.

We are putting the house on the market, but realise we might never finda home secure enough for the boys to play together safely enoughagain.

We also, with great sadness, recognise that in the future Chris maynever play dress up with his sister at home, or jump on the trampolinewith his brother Jacob.

After all the effort involved in moving from Essex to Shetland, I foundmyself in the position of fighting for a place in a residential school a12-hour boat journey and hundreds more miles away. I am no happier nowone has been found.

We have lost the company of a son we cherish and a family life we helddear, all because Chris can get the education but not social care heneeds.

I've been fighting for what is best for Chris for many years and now Ifeel that we've reached the end of the road. Boarding Chris is the onlyway we can ensure he gets the medical attention, the opportunity topursue leisure activities and a statutory education that he deserves andneeds.

However, the price he has paid is losing the people he has held so dearfor so long. And for us, we never anticipated that fighting forprovision for the boys would have such a financial and emotional impacton family life or that our last memories with Chris would be fighting tolose him.

Being the mother of a child with complex needs is hard, as you needsupport from a number of fragmented services. There seems to be littlescope to share budgets between health, education and social caredepartments. And getting help entails undergoing assessments, which inthemselves are time consuming. Finally, as each department has its ownprocedures to follow, by the time help is delivered it is often toolittle too late.

CHRIS'S LIFE

1990: Chris was born at Luton & Dunstable Hospital as we lived inLeighton Buzzard, Bedfordshire. It was a difficult birth, and there wereconcerns about Chris' lack of speech before we moved when he was 14months old.

1992: We then lived in Macclesfield, Cheshire, and Chris was referred toa speech therapist, paediatrician, audiologist, neurologist andpsychiatrist. Chris attended a special needs nursery as well as aprivate nursery, which I paid for, with mainstream children. At the ageof four, Chris began to attend a unit in a mainstream school inMacclesfield, but was found wandering on a main road as the building wasnot secure enough. Chris then got a place as a day pupil at a school inCongleton for autistic children, Lamb's House, and we found that school,respite, social care and health care were great, coping with Chris'behaviours and obsessive compulsive disorder.

1996: While at Lamb's House we moved from Macclesfield to Rode Heath, avillage on the boundaries of Cheshire and Stoke-on-Trent. The serviceswe received were good from a social care point of view as a socialworker developed a care package using facilities in all areas in orderto suit Chris' needs.

During this time, we also got respite help at an excellent care home,Prior's Hill, in Macclesfield, while Cheshire council transported him tothe same school even though we lived further away. We lived in RodeHeath until Chris was nine.

1999: We moved to Northampton as my husband got a job in London. We didconsider leaving Chris as a boarder in Cheshire but the council did notwant to do this and we believed he would gain more from family life thanfrom boarding. However, there were no specialist schools in thearea.

Consequently, Chris went to a moderate learning difficulty school inNorthampton.

Unfortunately, the school was not as structured as Lamb's House and wesaw Chris start to deteriorate rapidly.

2000: We became increasingly worried that if we did not curb Chris'deteriorating behaviour he would become hard to manage as a teenager. Sowe decided to move to somewhere there was affordable housing and aspecialist school.

We rang Essex council before we moved and were told it had goodprovision. I had contacted more than 10 authorities.

2003: We stayed in Clacton-on-sea, Essex, until Chris was 13. However,we were constantly looking for respite support and a specialist schoolplace for Chris as a day pupil. In December 2003, we decided to move toShetland.

2005: For the first 10 weeks on Voe, Chris received no social care oreducation. Since 2004, he's been educated at a primary school, a baseattached to a residential hostel at Anderson High School, at home and ina number of different non-educational bases around the island. After aspell in residential care, because we feared for his safety andinability to access statutory educational and social care, we decided toboard Chris on the mainland.