Alex - A journey back to happiness!

A happy and inquisitive baby

On the 27^th July 1998, our son Alex was born.  A little brother for Stephanie who was just approaching 3 years old.  A perfect little baby, a perfect family:  life felt great!

The only slight concern we had during this first year was when Alex developed mild eczema.  We have allergies both sides of the family, so put it down to genetics!

Alex was fully vaccinated up to this stage.  He did react to his very first injection at 8 weeks old:   he was inconsolable, he screamed until he fell asleep and his leg went bright red around the site of the injection.  When we spoke to the Doctors, we were told that this was a mild reaction, not to worry and give him calpol before his next injections. We kept up to date with all the injections as we thought we were doing the best for him.  He did have the MMR but we didn't notice any particular reactions afterwards.

Age 12 months - a very active boy! 

Alex's second Christmas, shortly

before his regression

He was a happy, inquisitive, very normal little toddler.  I've been looking back through the photo albums and there are big beaming smiles in nearly all the photos.  Unfortunately, this all was about to change. 

By 22 months when we went on holiday in France, Alex had gone.  It's so clear now as I look though the photo albums with tears in my eyes, but sadly we didn't notice anything was wrong at the time.  It seems so unbelievable, looking back with inevitable guilt, but our son drifted away and we didn't realise for another year.

He stopped smiling, all the photos have that 'impassive' face, or worse still, a clearly sad face.  He stopped getting excited when Daddy came home.  He stopped wanting to play Stephanie's games.  He stopped gaining new words.  He stopped responding to his name. 

He spent hours outside in the garden putting sand into buckets and tripping it out again. He was very co-ordinated and would ride his tricycle at great speed round the patio and perform fantastic seat drops on our trampoline.  He is a typical boy everyone said, don't compare him with his sister, boys are different.  He will talk in his own time.

At the supermarket he would run off and not respond when I called out for him.  I would race around the shop trying to find him; he was totally unconcerned, I was a nervous wreck!  If I tried to keep him in the trolley he would scream and I'd get those - Can't you control your child? looks from other shoppers.  He found things like hair cuts incredibly stressful, anything out of the normal routine.

Age 22 months, the smile has disappeared 

The beginning of the 'fill and empty' obsession

At 2 years 10 months he started pre-school, after a very difficult time toilet training him (at that stage, children had to be dry to attend the pre-school).  He cried inconsolably if he saw me leave and would start up again as soon as he saw the first Mum arrive back.  He had very few words at this stage and very little receptive language either.  He basically did his own thing at pre-school, spending the vast majority of the time in the sand and water.  Filling and tipping over and over again. 

During his second year he developed asthma and had a number of doses of oral steroids.  He was given a steroid inhaler to try and prevent future attacks. 

The asthma was viral triggered and unfortunately, Alex seemed to suffer from a high number of coughs and colds.  Any bugs going round, he would catch. 

Lost in a world of his own 

I needed an answer sooner and arranged to go privately.  The subsequent report brought temporary relief.  She didn't think Alex had autism; we had to let him develop in his own time.  Thanks goodness, I thought, I am just being a paranoid Mum!

Unfortunately, a couple of months later, the staff at Pre-school called me in to express concerns about the way Alex had settled in.  I sat in to watch a session and it was clear that Alex was very different from all the other children.  We started the battle to get a diagnosis. 

At this time, Alex was a sick child, his eczema had become severe and we were being given stronger steroid creams to keep it under control.  Steroid creams, steroid inhalers, oral steroids, they couldn't be good in the long term for Alex - and they were all tackling symptoms, not the root cause. 

We had had enough; we went to get advice from a Doctor of Integrated Medicine. He checked Alex for food intolerances.  The recommendation was a shock: no dairy, no gluten, no sugar, no tomatoes, no chocolate.  That was virtually all Alex ate.  How would I feed him?  He also have us a vitamin and mineral supplement, fatty acids and probiotics.

My life of reading labels had begun!  A friend loaned me a book by Lisa Lewis on implementing the dairy and gluten free diet and how it helped children with autism.  It took 4 months for Alex's eczema to clear up, but within a few days of implementing the diet, he said a short sentence.  Our journey had begun before we even got the autism diagnosis. 

A real stoke of luck!

Alex was happiest int he water - he taught

himself to swim at 3 years old

Whilst buying my own copy of the Lisa Lewis book from amazon, I spotted another 'recommendation', Facing Autism by Lynn Hamilton.   What a great find, a beginners guide to biomed, education and sensory integration all in one book.  We decided to find our more about an intensive educational intervention called ABA (applied behaviour analysis).

The wait for an NHS diagnosis became intolerable, it would be seven months from referral to appointment we were told.  We again went privately, although fortunately, our healthcare scheme covered the costs.  We spend a full day with a Developmental Paediatric Consultant, and in the afternoon an Educational Physiologist joined us.  The actual diagnosis of autism was a relief.   We knew Alex had autism but we couldn't access any treatments without the label.

A week later we were at PEACH having an introduction to ABA.  Three months later we started our ABA programme through PEACH.

Alex was so attached to his sippy cup he

 wore his front teeth down

It was a turning point, and Alex quickly progressed through many programmes from areas such as language, self-help skills, pre-academic skills and play skills.  One of the early programmes was to teach Alex to say 'yes' and 'no'.  At 4 years old if you asked him did he want a drink, he would echo back 'want a drink' for yes, or walk away for no!  He mastered yes and no in one weekend of ABA!  We employed a team of tutors to work with Alex 6 hours a day, 6 days a week.  I was the lead tutor.

Alex's journey continued..........