Treating Eli and Christian's Autism

Treating Eli and Christian's Autism

 

Eli and Christian were born 31st May 2001 at 24 weeks and 5 days gestation. I was surprised to be having twins and it was a shock to go into premature labour.

Eli weighed 1lb 9oz and Christian was 1lb 8oz. I had just flown in to see my family as I was living abroad. The condition I developed is associated with identical twin pregnancies and flying. I was actually told the boys were non-identical but it transpires that they are identical after genetic testing. I really wouldn't have flown if I had been given the correct information but it's no good now thinking about that, seven years later. 7 years later I am still fixing the damage.

The boys spent 7 months in hospital and eventually came home on oxygen.
The amount of invasive life threatening interventions the boys received was horrendous. I have them here today and thank god I was a nurse and knew the correct procedures from the bad practice.

They had everything you can possible imagine given to them and then, to add insult to injury, they were immunised and weaned early. At the time we listened to the professionals and went with their advice, little did we know what was around the corner.

The boys were very happy babies. They were engaged with us and even babbled appropriately despite being premature. They reached their milestones. They were checked and passed by the doctor and health visitor. At around 18 months I was going to join my husband and live abroad again and it was that time for MMR. I will never forget this as I did my research and weighed it all up and I even called Jabs and chatted to Jackie about my fears. However as we were headed for somewhere where the disease was prominent we gave MMR, along with hepatitis B and Meningitis C a couple of weeks later.

Well, within 6 weeks our boys disappeared. The eye contact, their language and most of all their smiles -- we had lost them, I thought it was the environment, autism never crossed my mind.

We came back to the UK the following month and waited 6 months to get an appointment with the child development team. Over the next few months they were assessed and we were given the diagnosis in November 2003. I will never forget it. We were told they had autism, they would never talk, never function in our world, would never have any friends and we had to put them in this bubble and protect them.

This doctor is still diagnosing this way today. Well we moved areas straight way as I never wanted to see this women again.

Well, I don't want to sound bleak but at this time between November 2003 and January 2007 I tried my hardest to tackle autism with behaviour strategies. You name it I have read it, to try to get my boys with me in my world. The boys didn't have any words till 2004 and were being taught with PECS. This was good at the time but didn't really help with behaviour. It got them to communicate what they wanted at times but only to their agenda, sounds familiar I know.
I have been bitten, the boys self-harmed, and they had so many sensory issues with noise, food and textures. The worst thing is they didn't sleep for nearly 5 years and I mean that we tried all the medications prescribed and none worked. It was the worst time of my life and my husband and I really struggled as we couldn't take them out for fear of what to expect. The boys would also do lots of spinning, stimming and put practically anything in their mouths, even batteries if you weren't watching them.

Eli had a large distended abdomen and Christian struggled to gain weight. They were always sick after certain foods.

In January 2007 at the Annual Review at school we thought we would have to look at a residential school - we were on our last legs, we couldn't cope anymore. We waited for a visit from school and while we were waiting my mother saw the flyer for the Treating Autism Conference in Bournemouth.

At first I thought "Oh yeah, another group of mothers in denial about the diagnosis as always" (I was using the medical model "autism isn't treatable") but I was curious. I had heard of bio-medical interventions but never investigated further.

The conference blew my mind and in two days I was convinced that autism was treatable.

I started straight away with their treatments and in 19 months Eli and Christian are very different boys. The boys are in our worlds, they talk functionally and understand, they sleep all night and they have excellent eye contact. They read and write, they are being partially included at mainstream school. They are learning the piano and both love music. The most wonderful thing is that I can manage them and take them out on my own and they behave - or should I say they don't show their autistic behaviour. All I can say is if I hadn't found Treating Autism and their approach I do believe I would be telling a different story.

As a mother and health professional I urge anyone to give it a chance. What have you got lose? Nothing.

It breaks my heart today as a public health nurse/ student health visitor that parents are still being told the same thing I was, autism is a life long disability and there is no cure......

They are obviously not looking at the same books, research and groups that I am. Autism is treatable - we know that now and we won't stop until our boys are recovered.

I have since joined the Treating Autism Team.

It's very hard not to when you are so passionate about autism and getting our kids well. All a mother wants is a healthy child and for their child to reach their full potential - Treating Autism is giving us that hope and support we need.

On an ending note "Onwards and Upwards!": time is of the essence but it's never too late to treat autism. Every child is different so therefore their programme will be different. There are tests and treatments available and lots of advice on how to get it on this website.

It may looking daunting but even the smallest changes can help, so what you waiting for.

Good luck from Eli, Christian, Nina and Tony and thanks for all the great people we have met and who have helped us on our way xxx.

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