The start of our Autism Journey…

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’.

What is this all about?

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… the short version!

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

Linking up with:

Me Being Mummy

Author: Linda Meek

So, a few years ago I started a blog... mainly about everyday things... usually to do with Austism (Aspergers) and having a Tween with it. Then I had a four year break while I ran a business, then closed a business! With this new found headspace, I'm back! The blog has a new name and we've all moved on four years, but other than that, you will find much the same! Along with running, I blog as a form of therapy, and if I can help anyone out there, then all good. I'm a mother of a teen and now an adult (how the fcuk did that happen) and let me tell you, it doesn't get easier as they get older... it just gets different! As I approach 50 (less than two years to go), I give less fcuks about stuff... apart from the ever-growing bag under my right eye, the increasing resemblance I have for my Nan and the lack of tolerance I now seem to have for alcohol which leaves me often questioning my life choices! 🥂🍺🤮 I do hope you will join me for the journey!

59 thoughts on “The start of our Autism Journey…”

  4. Thought your blog is brilliant. Well done. I can fully relate to what you have said as we had similar years of being fobbed off and i understand the tears of relief when someone finally listens and understands. Look forward to reading more blogs. Xxx

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  6. Beautifully written Lin, very interesting and well explained, good luck with this, I’m sure you will be helping other Mums out there who might find themselves in the same position you were once in. 💜

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  7. Totally inspirational Lin, you, Andy, Ellie and George are a fabulous family, your combined strength and love will carry you all into a glowing and positive future xx Just across the park, if you ever need anything xx

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  8. Well done Linda. You have written this well. Interesting and I’m sure encouraging for a lot of people who may be going through what you have been through and giving them some hope. Looking forward to following your blog. Love Pat xx

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  16. Well done Linda, sure this will help many people and inform the likes of me who don’t understand the condition. Good luck with your blog, will look forward to the next one. X

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  18. Well done Lindy loo. I had no idea this could be caused by a virus. I really enjoyed reading your first blog,keep going as I’m sure it will help so many people out there. We,ve had different issues with Clara and rob at different times,and like you said you know as their mum things arnt right.you want answers. Illness in your children can totally break you, Clara had six convulsions in six months and I don’t think I’ve ever been in such a worried state in all my life.Robs comes and goes but still breaks my heart. You want the best for them and their future and I remember turning to google and anything I could find to help me understand things. So share your experience Lin. Ps your family is beautiful and your doing great.xx

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  20. Lin I think this will bring tears to many. So fantastically written. Brings tears but how strong as a mother and daughter you have been. Well done I’m sure you will help people worldwide.

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  21. I managed to read your blog this morning. Thank you for filling in the background.
    Ellie has had a huge effect on me and I’m so glad that she is part of my life, even if it is only during work. She is pretty amazing!

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  22. I am so proud of my amazing daughter, your blog will help so many parents understand. It’s a roller coaster ride but when you meet Ellie you will see an amazing young lady who is loved by everyone. Looking forward to the next instalment, love you Linda we are all so proud of you. Xx. A proud dad. Xx

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  24. Thank goodness you went with your gut. This is so beautifully written, your journey will be so inspiring and uplifting for others. Well done hun, Becky xx

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  26. Loved reading this. This will be amazing for so many people. A very brave thing for you to do. Well done I’ll look forward to the next one xxx

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  27. Such an informative and heartfelt first blog Lin. I’ve definitely learnt something from reading it. Ellie is such a gorgeous girl. I’ll look forward to the next one. xxxx

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  28. I’m so glad that you found the courage to start this blog Lin. You’ve written your first piece brilliantly & I’ve no doubt you’ll have parents all over the world responding to your experiences & you’ll be seeking support & guidance for each other in no time!
    Proud to call you my friend. Love you. XxX

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