Welcome to what I hope will be the first of many posts, talking about the ups and downs on living with a ‘Tween’ with Aspergers. From past experiences to future hopes and dreams… it’s all here!
Welcome to ‘Tales of a Mother’s Daughter’.
This blog is primarily about the ups and downs of living with a ‘Tween’ on the Autistic Spectrum. My wonderful, funny, kind, challenging, anxious daughter is now 12 years old and on the brink of teenage years – god help me!.
From tales and tips, humour and hilarity (hopefully) and moans and groans, I’ll be waffling on about all sorts! From special wheat/dairy free diets and alternative therapies to hormones, teenage strops (and strategies to get you through it) and anything and everything in between!
I’ll be talking through past experiences as well and current ones – good and bad – offering advice… and asking for help!
So, why am I here?
I’ve been saying that I was going to start a blog about our experiences for years. I remember mentioning to my boss in an annual review at least four years ago, but never got around to starting… life just got in the way!
A lot has happened since those initial thoughts of the blog, and finally, I’ve gotten around to making a start.
The event to prompt me was the loss of my wonderful Mum. For five years she bravely battled cancer but finally lost the fight in February 2016.
Mum was my rock, my oracle, my best friend and the person who knew me inside out. Now that I no longer have her to turn to, I’m ready to start sharing tales about my daughter on this here blog – hence the name, ‘Tales of a Mother’s Daughter’. Clever huh? I hope some of the information and ideas will be useful, though I can’t promise it won’t be used for a right old moan now and again!
Our Story… in a nutshell!
What started out as a virus for our two year old daughter turned into something life changing. Something that would challenge our strength, our belief and our fight for a diagnosis.
Our daughter Ellie was two when she was poorly in early December 2007. A couple of days of vomiting and temperature seemed nothing out of the ordinary. It wasn’t until over the Christmas period that things started to change. Eye contact with us was lost, speech which was fairly advanced had reduced to moans and groans. The ability to follow simple instructions was gone and recognition of close family reduced greatly.
After paying to see a consultant who had no clue as to what was going on and deemed Ellie’s dream world behaviour as ‘endearing’, we had no choice but to turn to Google! We took to researching and found study cases for Allergy Induced Autism that matched exactly what was happening to Ellie. The main focus in helping children in these cases was removing Wheat, Gluten and Dairy from the diet. Not knowing what else to do other than to watch our daughter’s symptoms worsen, we had no choice but to give this a go.
After going through a period of ‘withdrawal’ from these foods (not too dissimilar to drug addicts coming off heroin) three weeks later we started to see an improvement in Ellie’s speech and she started to interact with us again… but things still weren’t back to how they were before. If at any time Ellie accidently had one of the withdrawn foods, she would suffer around three days later with excruciating tummy pains, and a worsening of symptoms in eye contact, moaning etc which would then lessen over a few days. It was clear to see that there was something in this connection with food.
There we embarked on a two year journey, seeing consultants, re-telling our story over and over again, having multiple assessments. We would go through the same story of how Ellie would regress and be in pain when she had wheat or dairy but the Paediatricians we saw had never heard of a connection with Autism and food. We were made to feel like we were making it all up.
We then insisted on seeing a particular consultant who was more specialised in this field. After several appointments with Ellie, she confirmed that Ellie was indeed on the Autistic Spectrum and we finally had a diagnosis for her. We also saw a Dietician that confirmed that some children with Autism can improve when certain foods are removed from the diet – but there is a very small window of opportunity to do this. Finally we felt we were getting somewhere!
Once we got a diagnosis we started to get some help. Support groups helped us to understand what was going on and put us in touch with professionals who were more ‘in the know’.
We met with a lady called Ruth Salisbury who, once we told her our story, sat and drew a diagram of the nervous system and explained to us exactly what had happened to Ellie’s system the day she had the virus and how things hadn’t reconnected properly once the virus had been fought. She explained how wheat and dairy are not being fully broken down in her tummy and therefore their ‘proteins’ stay in the bloodstream and effect the brain.
To have someone understand what you are talking about and give you the answers to why things are happening was the biggest relief. I think I cried the whole day, retelling family and friends that this is what had happened. For two and a half years we told our story to at least half a dozen consultants that didn’t understand, just nodded and said “oh, I see”. Finally – somebody understood!
Things would have been very different if we had listened to those doctors and consultants in the early days that didn’t really understand what was going on with our daughter. If we’d taken their advice, the situation would now be a very different one. With a little belief in what we were doing and the determination to fight – we managed to reverse those dark days of minimal eye contact, minimal speech and a host of other symptoms and kept going until we got the answers we needed to hear and got the help to move us forward.
When it comes to your children, never give up on your instinct…always go with your gut. You know your children better than anyone.
Until next time… Love & Hugs xx