Eli and Christian's Story with UPDATE

Eli and Christian's Story with UPDATE

 

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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ELI AND CHRISTIAN THE STORY SO FAR. (Update to March 2010)

Well, so much has happened since we started biomedical interventions in March 2007. The twins read for the Mayor of Guildford at her Appointment Ceremony. They have been doing lots of singing and dancing which they love. They have also gone full speed ahead with their language, understanding and development. In November 2008 the boys were reassessed by a private Educational Psychologist and we were told that they did not fit the ASD criteria and their primary need now was speech and language. We have even seen NHS professionals who are not sure about what has happened to the boys and are surprised by how well they are doing. This is very different from a diagnosis at age two of autism and being told they may never speak. All I can say is thank god they talk and are now doing so well.

The boys started mainstream school with support in September 2009. Eli and Christian have only ever been in ASD provision, so this has been a real achievement. They are really enjoying school and doing all the same things as other children in year 4. They still struggle with the academic side but they are reading at oxford reading tree level 11 and loving the Beast Quest books. They attended their first school disco which they loved. They have friends and really don't feel any different from their peers. I think I worry more than them.

I have been searching for more knowledge and interventions to help them reach their potential and doing the Handle course has really helped me understand all the missing pieces and how their prematurity has also had a huge impact on their development and way of learning. We still have lots of work to do but what I do know is that if we had not started this journey then the boys would never have been where they are now.

They have had lots of one to one help too; my parents and family have been so amazing with the boys, with all aspects of their development. They are starting football club and are having piano lessons. I am not saying they are cured, as I was supposed to have said in a national newspaper, but I think recovery is possible, depending on how much a child has been affected by all the toxins in the environment. But as autism is changing all the time, I now often ask what is normal and what is autism, I am really quite confused at times.

Then I think how come Eli and Christian have had such a positive response to biomedical interventions when all the odds were stacked against them from all the toxins they had been subjected too at 1lb 8oz and 1lb 9oz, it's a real mystery.

I hope one day a NHS professional will actually believe autism is treatable and acknowledge that our kids are sick and need help now, not in ten years time. We will get there but at this moment I am so overwhelmed at how my boys are now and how well they are doing.

Last year was a very difficult year for the boys and us as a family and we have overcome all the challenges and let downs, without going into detail. My boys are so brave and an inspiration to us and I do believe they were sent here to change things. As Christian says he's going to be a rock star when he grows up and Eli wants to join him. As a parent all you want for your children is for them is to be happy, healthy, safe and reach their potential and my boys are doing just that.

Thank you again to all our friends, for all your support and understanding and thank you to Treating Autism, Autism File and all our friends in the Autism World.

To all you Warrior Mums never give up no matter what you are told, you know your child best and Autism is treatable and I thank god every day that my boys talk and tell us everything and can lead a life pain free and be able to have the same opportunities as other children.

God bless and keep our kids safe.

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