Tales of a Mother's Daughter

So, back to the story.  Its January 2007 and what we know so far is that from a two day vomiting virus, Ellie started to lose all forms of communication… which then improved when we switched her milk… but then got worse again a couple of weeks later.

I hadn’t meant to tell hubby while he was away for work that Mum had asked if Ellie might have autism… but I’d been so worried, it just came out!  Of course, this suggestion was ‘absurd and ridiculous’ … I couldn’t believe I was saying it myself!  I’d got home from work and Ellie was in a confused state and making this awful moaning noise and shaking her hands frantically.  I remember ringing the doctor in a panic and getting an appointment that afternoon (those were the days!).  An hour later Ellie had calmed down and I called them back and booked an appointment for the following week.  At least now we had some time to research.

The case studies on the Respectrum website explained how children had stopped recognising members of their family, found simple instructions difficult, speech reduced and reduced eye contact.   The only time we heard Ellie talking was when she was reading her Fifi & The Flowertots book where you could hear her chat about Fifi and Bumble – so we knew the words were still in there.

By this time, hubby was also seeing that we had a point – that Ellie really wasn’t right and these case studies really did mirror what we were experiencing.

After reading more about how the diet helped these children, like a bull in a china shop, we decided to take out wheat, dairy and gluten from Ellie’s diet.  Now, this was 10 years ago and to say there wasn’t much around in terms of ‘free from’ food (in the UK) is an understatement!  You could buy loaves of disgusting bread and packs of pasta, but noting like the assortment of goodies you can get today.

My mum was an absolute diamond, she was constantly looking up recipes and searching for things in the supermarket that Ellie could eat.  She’d call me, so excited to have found something new we could cook up! I really don’t think we could’ve implemented the diet without her.  It all did feel like a lot of hard work, but with mum doing the ground work on the food side, we felt able to give it a go.

We bought the book written by the lady that ran the Respectrum site – ‘Diet Intervention and Autism – Practical Guide for Parents’ by Marilyn Le Breton.  She spoke about how her son Jack had changed dramatically after a few weeks on the diet and how the protein gluten and the milk protein casein, breaks down into peptides which act similarly to morphine – a highly addictive drug.  Marilyn went onto say that our autistic children were basically drug addicts!  She explained that our children crave the foods they can’t tolerate – like a drug.  It then dawned on me… Ellie was constantly eating Weetabix and eating cheese like it was an apple!

WTF!! Was this really happening to Ellie?

Marilyn also explained how she pulled all the ‘bad foods’ straight from Jack’s diet and that actually you should do them one at a time.  Aaaah, ‘”too late” was the cry – we’d already started!  (Marilyn, if you ever read this… please know that your book was invaluable to us – thank you x).

That next week or so was a bit of a blur if I’m honest.  Mum and I had gone to the doctor with our ‘findings’ who replied “you seem to know more than me” but did agree to refer us to a Paediatrician on the NHS and also write to a consultant in Exeter so we could see someone straight away privately.  We were so desperate for help.

Ellie continued to get upset and moan a lot, she was climbing like a crazy person, she was constipated, hot and sweaty had a constant runny nose and dribbling.

The day we took her to the private consultant she stared out the window of the car for the entire hour journey – it was almost spooky.   During our appointment she did look at the toys while we chatted and the consultant seemed interested in what we had to say but admitted he wasn’t specialised in this subject and found Ellie’s behaviour ‘endearing’. Seriously!!! Our child had completely changed in the space of a month following a simple virus and you describe her dreamlike state as ‘endearing’.  That was my lasting memory of that appointment.  He did however, agree to do allergy testing (as he’d never heard of intolerance to food), which subsequently were all negative and cost us £200 – something he’d failed to mention!

So we continued on the diet, writing down everything that passed her lips, buying obscene amounts of corn pasta, rice and soya milk and any other treats we could find.   We kept a ‘Food & Mood’ diary so we could keep tabs on any progress and keep pre-school up to date with what was happening.

After a week or so, Ellie’s moaning seemed to calm down and we were in the swing of the new diet. The next thing I remember was about three weeks later when, after having no direct speech for a good two months, Ellie came up to me with her pre-school bag, took out her jeans, held them up and said “Mummy, Jeans”.

I think I held my breath for what felt like forever… and then got straight on the phone to Mum.  The only speech we’d heard since before Christmas was chatting into her books, but today, Ellie had come and showed me something.  I wanted to cry, laugh, scream with joy!

Was this diet really working?

Until next time…

Love and hugs xx

Back in the present day now and I’ve been wondering …Will we ever nail the morning routine? Whatever we do, it always ends in stress and anguish… and that’s just me!! 

We’ve tried all sorts in the past – countdown traffic light timers, ticklists, social stories etc etc and I’m sure I’ll come back to those in later blogs. 

This week we have changed around the order of breakfast and getting ready – we’ve been doing breakfast first and then ready for school. This seems to be going a little better because it means Ellie is downstairs eating (her favourite thing to do in life!) whilst I and hubby are upstairs getting ready. 

Now at age 12, Ellie can remember what uniform to put on and asks for help with bits that are fiddly – it’s those things you can’t see, like hygiene that I have to keep nagging about – and whenever I remind her it’s nearly always met with a stressful SORRY! with hands a’flappin and feet a’stompin! It drives me bloody mental! 

So today I bought something new… a small light up board with just two things on which Ellie turns off when she’s done them 💡

I’ll let you know how it goes!!