WARRIOR MUM - JO WORGAN'S JOURNEY INTO THE WORLD OF AUTISM

Autism, SEN - Pre-school and Primary.  

Like most warrior mums, Jo Worgan has left no stone unturned when it come to tracking down information - anything - that will enable her son to live as full a life as possible. What I love about Jo is her generosity of spirit for sharing all that she learns, and her enthusiasm and optimism that she spreads along the way.  

 

JO'S JOURNEY 

"I knew something was 'not right' before Tom's first birthday. There were lots of different things that niggled me really and I kept thinking, something is wrong with this child but I didn't know what. By his second birthday I definitely knew. He would scream and shout and have meltdowns for no reason. He would flap his hands and be very active and unsettled. He would not use a fork or spoon and he seemed to regress with both language and diet."

I was born in Birkenhead, on the Wirral, in north of England, in 1975, then, when I was nine, we moved a few miles away to Moreton. 

I’m the eldest of four: two girls then two boys. I had an extremely happy childhood with lots of days out and 'family time' together. I was the sensible older sister and when my youngest brother was born, I was 13 and acted as a second mum really. I loved looking after him though.

M. What was your first job after leaving school?

I went straight to university to study English Literature and Drama with Theatre Studies and I gained a BA (Hons) in 1996. While studying I also worked a night shift once a week at a nursing home, which I loved, and where my mum also worked. Once I had finished my degree I wanted to do my teacher training but I found it very difficult to access a PGCE course as I had a combined honours degree. So I decided to have a complete change and I went and got a job as a dental nurse and worked at the same practice until 2000 which was when I left to start my nurse training.

M. What made you decide to go into nursing?

My mum has always done care work and she herself was an SEN, I also enjoyed my work as a care assistant at the nursing home so I thought why not go and train as a nurse. I love 'looking after people' so I thought why not give it a go.

M. Where did you do nurse’ training and why specialise in renal nursing?

I trained at Arrow Park Hospital in Upton through Chester University. My intake was the last one as a school of nursing based in the hospital. We had no lectures in the university as the whole three year course was hospital based. I loved it and gained a diploma in higher education with Registered General Nurse status. During the last three months of training you could choose a specialism and I chose renal nursing as I thought it seemed interesting. I remember my first day on the haemodialysis unit and I was scared to death, all the machines were beeping and tubes everywhere but after a few weeks I loved it. The unit where I was working was only a 'satellite unit' the main unit being at the Royal Liverpool hospital, and me being the cheeky person that I was and still am, I asked to go and have a placement over there. Somehow they agreed to this and while working there they offered me a job as a newly qualified nurse. I was there for a total of 6 months as we had to relocate to Dorset for my husband’s new job. Luckily though I managed to find bank work at the hospital in Dorchester and for 6 months I worked on orthopaedics, surgery and elderly care. This was all fantastic experience but fortunately I kept popping into the dialysis unit and when a vacancy became available I got the job. So I then worked on the haemodialysis unit, general ward and peritoneal dialysis outreach team. I also completed my renal course so that I became a senior renal nurse within the unit.

M. Tell us about your family.

I met my husband Andrew at school when we were both 15. We are the same age and I knew the moment I saw him that we would get married one day. We were chatting one evening when we were 18 and Andrew said, 'shall we get married?'  And I said, ‘ok’. We have been together ever since. Andrew went to Bangor University to study marine chemistry and he stayed 4 years as he did his master’s degree there. When he came back home to the Wirral I was working as a dental nurse and he started his Ph.D. at Liverpool John Moores university, this took him 6 years as he was working as a lab technician at the same time but it enabled us to save money and get our first mortgage and home. 

Mum and Dad on my wedding day

We married on the 20th June 1998, we had a church wedding, I wore a white dress, and we had a buffet and disco afterwards in a local pub, so a very cheap wedding but such a lovely day with all of our family and friends.  
 

We have two sons: Stephen is 6 1/2; he was born on the 30th November 2006, in Dorset by emergency c section, long story. He was 16 months old when Tom was born on 8th April 2008, in Lancaster, also by emergency c section, another long story. They are both very special and unique.

Tom

Tom is five and he goes to Hillside Specialist School for children with Autism Spectrum Disorders, it is in Longridge, Preston. He did one term at mainstream school with one to one support but this did not work out as he needs specialist interventions. He started at Hillside in Jan 2013. This was the best decision I ever made. Tom is a character, he is very blunt and straight to the point, he takes everything literally so you have to watch what you say. He struggles in social situations with sharing, communication and social rules but we muddle through, he also has very little sense of danger and has to be watched constantly, I am forever on my guard. Times at home can be very difficult in trying to keep the peace. He loves books, stories, his IPad, computer, DS, play dough and playfoam. He loves to lie on the floor surrounded by his cars. He loves outdoors and enjoys the garden slide and trampoline. He also loves to go to the farm and playground. He can be very caring and shows empathy if someone is hurt or upset. He is very tactile and enjoys massage and strokes to his back and legs/feet. He benefits from a visual timetable and simple instructions. He can be very funny, he makes me laugh. He can though also be very aggressive and hit out and shout but this is usually short lived and soon forgotten.

Stephen

Stephen is 6 and the big brother. He is so very caring and rather a sensitive soul. He is very protective of Tom and very understanding. He has an amazing imagination and acts out either being a palaeontologist or a Jedi knight or an Eddie Stobart trucker. He wants to be a palaeontologist when he is older but he does not want to go to university as it will be boring. He loves to read, he reads very well and loves to tell me stories that he has made up. He really enjoys swimming with Andrew and like Tom enjoys being outside and 'coffee juice'. We try to make time for Stephen of a weekend and in the holidays. It is one of the reasons that I put Tom into holiday club as we get time alone with him. I do worry that Stephen feels he has to care for Tom and so therefore I feel that he has time just for him to be a little boy. We often have treat nights were we either watch dinosaur movies or Eddie Stobart. He is a very special little boy.

They are both so very different and although they can argue as brothers do they are very fond of each other and call each other 'best friend'.

M. When did you first have concerns about Tom’s development?

I knew something was 'not right' before Tom's first birthday. There were lots of different things that niggled me really and I kept thinking, something is wrong with this child but I didn't know what. By his second birthday I definitely knew. He would scream and shout and have meltdowns for no reason. He would flap his hands and be very active and unsettled. He would not use a fork or spoon and he seemed to regress with both language and diet. He also started to want things to be the same, to eat the same foods, do things the same way, put clothes on in the same order and go the same routes when out and about. He would also not settle for anyone else other than me, when he started nursery at age 2 after a month a meeting was called in which the nursery voiced their concerns regarding Toms behaviour. He would not settle, would not share and was very much doing things on his own agenda, he would not follow simple instructions. This was how he was at home. 

Stephen and Tom discussing world politics

M. Had you had much contact with children on the autistic spectrum?

I knew very little about autism and had never met any children on the autistic spectrum prior to receiving help and support. Once I started to receive help from the children's centre I started to go to the peer support group there, AOK, which support families who have children with additional needs with or without diagnosis. It was here that I met many parents and their children, I still go today. This completely changed my life, I met inspirational parents who gave me wonderful advice and support and over the years I have been able to do the same. 

M. Although Tom’s diagnosis must have been difficult to come to terms with was it a relief to have your suspicions confirmed?

I always knew something was different about him and when I started to receive support I started investigating, I always had in the back of my mind that he was autistic and it was only when my mum asked me what I thought was wrong that I voiced this. When looking on the National Autistic Society website I then knew that Tom was on the autistic spectrum. Over several appointments with the paediatrician she gave us a diagnosis of?ASD (Autistic Spectrum Disorder) then probable ASD then ASD. So this happened gradually for us. Although it came as no surprise I did feel relief that he had been diagnosed and that this opened up the door for more help and services. However strangely I also felt deep sadness and guilt that somehow I was to blame and that yes, he is autistic. There was now no doubt.

My advice now, with hindsight, is that if you have concerns talk to your Health Visitor, for children under five and also contact your local children's centre for advice and support. I did not know this at the time and it was only because the nursery was based at the children's centre that we received help.

M. What has been the biggest challenge in dealing with Tom’s disability?

I can cope with most things really, you learn to adapt to the challenges you are faced with at both home and 'out and about'. This is within my control. However the biggest challenge that I have been faced with so far is with regards to his education and in getting him correctly placed in an autism specific specialist school. Although I was included in the process of gaining a statement I felt that my wishes and concerns about placing Tom into a mainstream setting were not listened to. However he is now where he needs to be and progressing well. 

M. Do you worry about the future? 

I worry all the time about his future, it is very early days for Tom and we do not know how he will progress but it is always at the back of my mind, 'who will look after Tom when I am no longer here?' I am unsure at the moment if Tom will be able to lead an independent life or if he will need some sort of support, I just don't know.  The future is a very uncertain one for him and that does frighten me. I also worry about how vulnerable he will be 'out there' because if his disability and that he may become the target of bullying. I worry all the time although I try not to. 

Andrew with the boys

This was very much brought home to me by an incident that happened on a bus ride home with the boys. We were sat at the back of the bus and Tom became very distressed and had an autistic meltdown, I therefore had to try and keep him safe as well as trying to calm him down, difficult on a busy and moving bus. While doing so though I was verbally attacked by a fellow passenger who told me to 'control my child as he was disturbing the other passengers'. When I tried to explain to her that he was autistic and could not control his behaviour she then launched into an attack of how autism does not exist and that it is 'just a label used as an excuse for naughty children'. This is what I fear, that Tom will not be understood, he will be so very vulnerable and subjected to bigoted and uneducated opinions such as this passenger's. The future, I feel, is a very frightening one. 

This is why I support Kevin Healey and his Autism Anti Bullying Campaign, I want Tom to be better protected and supported as an adult who is on the autistic spectrum, as we do with all of our children. 

M. We have both found an outlet in writing and thanks to the internet there are no geographical boundaries and we’ve been able to share our stories with people from all over the world. Tell us about your books. 

Life on the Spectrum. The Preschool Years. Getting the Help and Support You Need. 

I started to write this book in the Summer of 2012. I was sat one day with Tom on my knee and I just thought how lucky and well supported we had been in getting a diagnosis  and interventions for Tom, I felt incredibly sad for those parents who were not so lucky. I therefore thought to myself, why not write a book about the help and support we received, just telling our story, but at the same time giving lots of practical information and resources. So I did.  I sat and wrote the whole book on my iPhone, usually with Tom draped all over me. I honestly thought that only a handful of people would read it and was genuinely surprised when I received comments from parents from all over the world. I also enjoyed writing the book, it was very cathartic for me and in a way I felt that I could move on. 
Available on Amazon   
      

My Life with Tom, Living with Autism. The Blogs, Volume One.

I started writing a blog after I had published 'Life on the Spectrum', I still felt the need to write, in a way I needed to vent my feelings, frustrations and celebrations. By doing so I also connected to many other parent bloggers and gained much support. It was when talking to my Auntie one day, on the phone, when she suggested that I put all my blogs into a book that I thought, why not? Sounds like a good idea, and so I did. It is another way to reach out and support other parents in similar situations as well as being a lovely keepsake for me, of life with my boys when they were little. 
Available on Amazon
 

M. What I found particularly interesting about your book, My life With Tom, was the transition from nursery to mainstream class, and then to a specialised school - and all before the age of six. For any parent with a young child on the spectrum your journey must give them much hope as to what can be achieved with the appropriate education. Sadly though, it seems these specialised schools are few and far between, and the 'outside looking in' situation you found yourself and Tom in during the short spell at mainstream school is a sad reality for a lot of children and parents today. To place a child in a mainstream school setting they may have an adverse affect to, seems so counter-productive and must be heart-wrenching for the parents. I wonder why it is not a legal requiremet for every county to provide a specialised school for children and young people with ASD?  
Tom  attended a mainstream school for one term and it was a total disaster. This was through no fault of the school's. They did their very best in giving Tom one to one support from the very beginning, even without a correct statement of educational needs to being in place. Tom was only given part time support and it was agreed with the school that he needed full time support. He needed help with dressing, his personal care needs (he was and still is in nappies), his associated sensory needs and challenging behaviours, his lack of danger as well as his entire specific educational needs due to his ASD. However the truth was it was not the correct environment for him to be in. The class size was far too large, 38 children in total, the classroom had all the typical drawings and artwork hanging from the ceiling and it was small so this created lots of sensory overload for Tom. There was also no safe play area for Tom as the school gates were not locked and secure so when outside during morning play, he only accessed at most two hours of school during the morning, he had to hold onto his Teaching Assistant's hand.

During this time I had very close contact with the school and the Head teacher I have to say was very supportive in getting Tom into the right setting for his needs. Together with the local education authority a specialist ASD school was found, albeit in the next county, a forty five minute drive away, where he travels on the school bus with an escort. Tom went from a class of 38 children to a class of 9. He was able to access safe outside play, a soft play room and a sensory room. The whole school environment was catered to meet his needs.

Although both upsetting for myself and Tom I know that we have been extremely lucky. Tom was given a statement of educational needs. Although I had to fight initially to get the correct level of support for him and which in the end he did receive. For many parents this is the first battle on the rocky educational journey for their child. I also feel that Tom was very quickly placed into a specialist ASD school and I know many other parents whose child should be placed in a similar setting but due to lack of places, funding or diagnosis, many children who are on the higher level of the spectrum find it increasingly difficult to access specialist provision, this is not possible. Therefore I am eternally grateful that Tom is where he is.

M. Now that the children are in school have you taken up any special interests? 

I decided that once Tom was settled in school that I would go and volunteer at the local village preschool. This was where Tom attended. I contacted the local further education college and they agreed that I could start my level 3 once I had my placement. So I started my NVQ level 3 in Children's and Young People's Workforce in February this year. I volunteer for a couple of days a week and I really enjoy it. I needed something to do, to get me out of the house and to just be me rather than Tom's mum. I cannot go back to work at the moment so this is ideal for me. I will have finished the course by October.

M. I'd like to finish with a few words from your book, My Life with Tom. What you say must resonate with parents of special needs children the world over...

"My Tom is four and has Autistic Spectrum Disorder. There are many comments when people meet him, including, 

 
'he doesn't look autistic' , 

 
'how awful for you' 

 
'I am so sorry'  

Although people do not mean to inflict hurt with their words, they do. 
 

So here is the truth 

Autism is a 'hidden' developmental disability, which affects the person socially, behaviourally and communicatively. Above all though, he is my little boy. He does not 'look autistic', I do not think life is 'awful' and I am not sorry that I have him in my life. He makes life special".

M. Jo, thank you so much for sharing your journey with us.


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