This is an attempt to tell the factual elements of our story, hopefully covering things that people ask us about most often.  Some of the information mentioned might seem a bit ‘random’, but the relevance should be explained through looking elsewhere on the site.  

Archie was born just a few days before his due date by Urgent Caesarean Section on May 30, 2003.   He was a healthy weight with good Apgar scores and although we had a few scary quiet seconds after he emerged while he was taken for a clean-up, he soon screamed loudly enough.

During the pregnancy I had a severe ear infection that was treated with antibiotics and painkillers, but otherwise the pregnancy was normal.  I had no strange cravings but I did eat tuna quite frequently (it’s since been recommended that pregnant women only eat tuna or oily fish once a week).

After the birth I had a severe infection as a result of the surgery, this was treated with antibiotics.  Again, there was nothing remarkable about the early days – Archie was healthy and aware of his surroundings – he fed well and slept reasonably well.  His sister was delighted with her new little brother.  We navigated life with our new addition to the family - getting used to the demands of two children.  We were busy, but very content.

Archie breastfed for 7 months and starting weaning at around 5 months.  I lost a large filling in December of 2003 and had it replaced with a white filling, but otherwise our health was good.  Archie developed well and reached all his milestones ahead of time – he walked at just 9 months and was very active and curious about the world around him.  We dont remember him pointing.  He did begin to talk – dada and nana - he also began to wave goodbye and say ‘ba ba’.  I remember that he was quite happy to be in his bouncing chair in the early days and though he was interested in us, I never really got the ‘intense’ relationship that his sister had demanded from me.  I put this down to several things – different personality, a boy, second child, I didn’t have as much quality time to spend with him as with his sister, etc.  However, he was a delightful, active, curious, adventurous baby with a great sense of humour – many people commented on how bright he was – like a little scientist – if anything, we wondered if he was a little genius in the making (and still do!).

Overall Archie was very strong and vibrant, and didnt seem to catch many colds and bugs.  However, if something took hold it did seem he had difficulty shaking it off and consequently he had an ear infection and a chest infection during his first few years that both needed antibiotics to clear.

Though we agonised over the MMR for Archie, as we had for his Sister, when the time came there was a measles scare.  Because his Sister had no adverse reaction to it previously, and we believed it was important for 'healthy' children to be vaccinated to protect the 'less healthy' children in the community, we took a deep breath and went ahead.

Archie didn’t have an extreme reaction to the MMR but his behaviour did change during the time after.  As Archie reached 18 months we all noticed about how excited he got at certain parts of TV programmes, mainly the credits – he would bounce up and down excitedly, flapping his arms – we didn’t know about autistic traits at this point.  We also thought he might have problems with hearing as he seemed unable to hear us talk to him, though he was able to hear a particular programme theme tune come on, even if he was in another room.  We were also becoming concerned as he had lost the speech so far gained, and apart from a few noises when excited, there was no sign of any speech emerging.  We asked for a hearing assessment, which showed he had normal hearing – and then a more detailed assessment, which confirmed that his hearing was in perfect working order.

These results came in shortly before Archie’s second birthday, and this was when we started to suspect autism.  On his birthday, after he had done as much as possible to avoid his party, ignored all his presents, ran away from the bouncy castle, choosing instead to hide in the quietest places where no people were, we decided we should get him to a Specialist – hopefully to put our minds at rest.  We spoke to other people about our concerns and they tried to reassure us – ‘he’s just a boy – all boys are like that’, ‘there’s nothing wrong with him’, ‘Einstein didn’t speak until he was 5’ – we started to doubt ourselves - were we being neurotic?  I deeply appreciate that during this difficult time our friends and loved ones continued to try and find the right words to support us and calm our fears - they too were hoping we would find the answers we needed to put our minds at rest. 

Around this time I started to keep a diary of Archie’s speech and behaviour.  He took to repeatedly pouring sand from a cup – always using his right hand and tensing with excitement – he then transferred this behaviour to pouring water.  One day, out of interest, I left him to do what he wished and he did nothing but pour sand all afternoon, and then go upstairs to pour water at bath-time.  I now knew in my heart of hearts that he definitely had ‘autistic traits’.  

Around the same time, Archie’s nursery (he attended 2 days per week while I worked), gently and professionally raised their concerns about his behaviour.  They booked a meeting for me with the Area Special Educational Needs Co-Ordinator (Area SENCO), so she was the first experienced person I spoke to about our concerns in July of 2005.   She asked me to make a ‘can do’ of all the things Archie was able to do, in preparation for the meeting – this was scary because it made me confront just how bad things had got.  I just kept thinking ‘when did he stop clapping?’, ‘when did he stop playing?’ and felt terrible that these skills has slipped away, why hadn’t we noticed?

During the appointment, the SENCO and I watched unseen as Archie played in the sandpit at Nursery – pouring sand just like at home.  When it came time for the staff to bring the children in, all the other children lined up but Archie clearly didn’t understand what was going on and went into complete meltdown, it took 3 staff to carry his thrashing body safely inside and it was clearly very distressing for everyone involved – not to mention the staff getting head-butted and kicked in the process.  Together we put together an action plan to curb the behaviours that were distressing or dangerous, and she made referrals to a Speech Therapist and the local Portage team. 

A member of the Portage team visited on 1^st August 2005 and continued to keep in touch while I was on the 4-5 month waiting list for a regular visitor – she was the first person to give me some guidance on practical things I could do to help him, and ways of making things clearer for him, and had a great natural talent for detecting and calming my worries (which were plenty).

I bought some books about PECS – the Picture Exchange Communication system and started taking photos of all Archie’s favourite food and drink items.  We started with chocolate buttons, and very soon he picked up exchanging cards to get what he wanted – a huge percentage of his distress disappeared as soon as he had this option to communicate with us.  We also tried Makaton signing – he didn’t attempt to make any signs himself, but it seemed to help him make sense of what we were saying to him in some situations – a good example being ‘Stop!’ (though it took a very long time!).   

In September 2005 I got an appointment for a group Speech Therapy session for parents to give information about helping their children communicate.   I was so hopeful that this would give me some answers but embarrassingly I burst into tears at the end of the session because Archie would have been unable to do any of the things they had suggested.  I was starting to feel panicky that I was getting no answers.  The Speech Therapist put me on another waiting list for a special needs group session.

During October 2005, I received an appointment to see the Senior House Officer in Community Paediatrics, towards the end of the hour she called in the Community Paediatrician and they told me they would put Archie on a 6 month working diagnosis, but I should be prepared because they felt it seemed likely he would be diagnosed with an Autistic Spectrum Disorder at the end of the six months – they asked me what I felt about it.  I replied honestly - I wouldn’t have believed them if they had said anything else.  By this time my husband and I both ‘knew’ but still hoped someone would say we were mistaken – that it was temporary, or show us a button we could press, or a pill we could give – anything to avoid the fact that our son might have this mysterious disorder.

Archie and I tried our best to take part in some ‘Special Needs’ 45 minute speech therapy group sessions through Oct and Nov 2005, but it was distressing for us both.  He couldn’t tolerate the fluorescent lighting in the health centre, being in a small room, being with other people, the singing, any of it – he literally crawled the walls from the second we got there, screaming.   We stopped after a few months, opting instead for a Speech & Language Therapist to visit Archie once a term at his school setting where he was comfortable – that was the only alternative available due to the shortage of Speech and Language Therapists in the area. 

By this time I had started to research, fairly obsessively – something I heard referred to later on as ‘guilt-induced hyperactivity’ (there’s a name for everything these days!) – but I had to do something – everything I was reading was saying that early intervention was crucial if Archie was to stand a chance at an independent life, yet appointments were taking forever to get, turning appointments into therapy was taking forever, and people were telling me to be ‘patient’, telling me I had to have ‘reasonable’ expectations. 

During December 2005 I read a great book called ‘The ‘Out of Synch’ child’.  I found so much information in there that applied to Archie and helped me realise how much of what was happening with him was due to sensory processing problems.  I asked for referral to an Occupational Therapist (OT) as soon as possible.

It was around this time that I realised I was going to have to reduce my working hours – the groups and childcare options available and the amount of extra ‘unpaid’ research work and running around I was now doing, truly left us no option – the loss of my portion of income put us in a very difficult situation – it was not an easy decision.  I heard about Disabled Living Allowance and started the application process.  The DLA application process was/is a nightmare! – We got refused at first and had to collect 16 pages of evidence to prove our son was more difficult to look after than another child of the same age.  We were still coming to terms with what was happening and were forced into this situation where we had to spell out all the difficulties we were having in such a negative way – it was agonizing.  Thankfully we had the internet and the Citizens Advice Bureau to help us but it was the absolute worst part of the early days – I can honestly say that the DLA process was WORSE than getting the diagnosis – ( Dont let me put parents off though - DON’T enter into it without support – but enter it as soon as you possibly can –it takes a long time.) 

In January 2006 we attended our first OT session – by then I had lots of questions and it was great to have someone really interested and keen to help to talk it all through with – we worked through some analysis documents over a few weeks and got input from his nursery too – it was a huge part of making sense of how Archie was coping.  Many of the behaviours he was showing were ways of seeking sensory comfort or ‘self-regulating’ his sensory problems.  It helped me to relax as I could understand ‘why’ he was jumping, tensing, grimacing, unable to stay still, unable to settle to sleep – and it set me on a path of giving him some ‘sensory solutions’ – things that were at last helping him to feel calm and safe in the world – a weighted blanket, some cushions to bury himself in, a trampoline, a swing – all simple things that really helped.  Also, I started to remove all stimulants from his diet – artificial colours, preservatives, MSG, caffeine, sugar – even though we had made a huge effort to be organic and healthy, it was a surprise how much ‘hidden crap’ was still making it into his system – mostly hidden in foods pretending to be healthy for kids.

We also got a place at a charity supported playgroup in January 2006, for children with special needs.  This was a big step for us as parents – accepting that Archie was ‘different’, accepting that it was necessary for him to go out of mainstream for help.  Any reservation we had was immediately dispelled as soon as he started.  It was lovely for him to have one-to-one support, and comforting to meet other parents whose children had special needs.  It helped dispel the many misinformed and preconceived ideas we had about special needs, and challenged the cultural myth of disability being a terrible thing – these were just families, muddling through life just like us.  I was learning and moving forwards, but quietly at night, when it was just me and my thoughts, I still kept hoping I could find a way to ‘solve’ the autism – I still had trouble accepting it as an intrinsic part of Archie. 

We started to get a regular Portage visitor in January 2006 too, coming once a week for an hour and setting some targets for play etc. for each week.  This was very useful, but by now I was finding I had lots of advice about ‘what’ to do, and what I really needed was some practical help getting it done - my list of 'things to do' turned into a book of 'things to do'.  I was starting to get overwhelmed with the enormity of what needed to be done, and was literally working for every second of every day, as well as most of every night – Archie continued to wake frequently, taking hours to settle each time.  In amongst all of it I was trying to make sure his sister – at 5 years old and just starting school – was getting the attention and care she needed – not easy when we still had to watch Archie like a hawk every second of the day, trying to guess and anticipate his needs and keep him out of danger (he has absolutely NO sense of danger and is really good at climbing and generally throwing himself off things – or breaking electrical equipment by pulling it off shelves).  Even the school run was really complex – needing a travel schedule, snacks and a rigid routine to get Archie in and out of the house and the car – putting a coat and shoes on him was a challenge in itself.   I was continually chasing up appointments, looking for help, researching to try and find the right answers and make sense of all the conflicting advice.  Trying to engage Archie, give him a consistent environment, keep him away from the telly for reasonable periods in the day.   My husband had taken extra work to make up for my loss of income and we were having trouble even getting to be in the same room we were so busy all the time – he had taken on two extra jobs to try and make ends meet, as well as taking on his fair share of domestics whenever he re-entered home - we kept making time to talk whenever we could squeeze it in - usually in between taking 'night shifts' and trying to get Archie back to sleep. 

The appointment for our follow up with the Paediatrician arrived in February 2006 – the diagnosis was confirmed.  I thought we were prepared for it.  Still, the official diagnosis seemed to knock us considerably, sending us reeling and still flailing for something to hold onto.  The 'old school' line in the UK is roughly ‘Autism is a lifelong disability’, ‘accept’, ‘learn to live with it’.  You find yourself outside the Health Centre, back on the street with no leaflet, no support – just a promise of an appointment in three months.  You try and find out what this means for your family - through the internet and books, and find mixed expectations - the worst being that you will ‘cope’ with this for as long as you can before your child is taken into residential care, that statistically you are now very likely to end up divorced, in poverty, that siblings in the family are likely to suffer tremendously.  We wouldn’t accept that as the future for our family and decided instead to follow the advice of those with a more positive outlook.  

The Hampshire area have a training programme (autism specific) that I took part in during February 2006 with the Nursery Manager and Archie’s Key worker – it was a very good idea for us all to be on the course at the same time because it helped us all to work well together over the following months.  The course helped us all develop new skills for working and communicating with Archie.  There were a few parents but mostly professionals.  It was very helpful, but...... I came back with an even bigger list of things to do!  And still no help to get any of it done.  The nursery were having to try and get funding to cover the extra staffing and time Archie needed - all taking time and effort, and with no certain outcome.  What was clear was that he needed one-to-one attention at all times, what was unclear was how we made that happen and how it could be funded.  

In April 2006 we had our first meeting with an Educational Psychologist who watched Archie in his group and then gave feedback and a report that followed in May. We had an initial talk about Special Schools and the process of statementing.   The EP was in agreement with our belief that Archie would need a special needs placement.

I attended through the summer some one day workshops with the National Autistic Society which were very good – particularly the Help! Course – I went on it much later than was ideal – it is targeted for people who have just received the diagnosis, but still found it really useful.  It covers benefits, entitlements, and an overall look at what help is available to parents of autistic children.  It gave me lots of leads, some paid off, some didnt, but was well worth attending.  The follow up are a series of one day workshops on topics that will help parents and are all described on the NAS website.

Once I had some strategies in place and had rearranged the house to make it more ‘Archie friendly’, I started to look again at his general health and diet. 

Archie always had a strong preference for sweet things from weaning onwards, refusing savoury foods unless sweet was mixed in – the only non-sweet thing he would eat was mashed potato or pureed rice.  He always suffered with constipation or diarrhoea.  As he grew older he became more and more fussy about his food, and if it wasn’t presented in a certain way on a certain plate he just wouldn’t eat.  He developed a marked preference for pale and crispy foods and everything he ate was first tested with a long and complex procedure – first touching, then mashing through his fingers, then touching to his lip, then touching with his tongue – if it passed all these ‘tests’ then he would eat it.

As soon as we suspected autism and started to read around the subject we realised it was prudent to check all his favourite foods and removed MSG, artificial colours and additives, unnecessary sugars.  Most of his foods were already organic, but we now made sure all were.  His hyperactivity reduced slightly but his digestion was still making him very uncomfortable. 

Next we introduced omega oils and probiotics, then, after reading about the gluten and casein free diet and information on the ARI website, I sent a urine sample to Sunderland Uni and following the results, removed gluten from Archie’s diet from the 1^st May, 2006.  The results were amazing and within just a few weeks he went from having literally never sat still during the day to sitting for up to 20 minutes to eat a meal.  We had never seen him sit on our sofa until this time! His bowel movements became regular, he became calmer – and was less uncomfortable during the night.  We were finally starting to make him feel better.  His sensory disorders also seemed to reduce gradually – still there, but not getting in the way for him so much.  Things started to improve for us as a family – we moved out of constant ‘firefighting’ and started to feel we were getting somewhere near family life again.  We were occasionally getting as much as 5 hours sleep and were grateful for it. 

During July 2005 I added an a-z multivit and mineral daily and, after reading about magnesium and autism, started adding Epsom salts to his bathwater every second day – both seemed to be good, sleep at night seemed again to improve slightly.  After reading about enzymes we also began to give him a broad spectrum digestive enzyme to help with the ‘problem foods’ that we still were having trouble working out. 

 It has been disappointing to us that despite our best efforts, and the support of our GP working as an advocate, we have been unable to access help through the NHS for Archie’s gastro-intestinal symptoms.  The reason and advice given?  There is no proven link between diet and autism.  Yet, if his sister had the same symptoms, they would be looked into….?   

At the point of writing this and starting the website, Archie is 3 and a half.  His favourite activity is rewinding and fast forwarding videos and DVD’s – still preferring the credits to the film.  He has some toys he knows how to use, mostly cause and effect toys that are visually stimulating.  He has no speech yet, but he is making more verbal sounds, some which are recognisable as definite sounds, hopefully emerging words.  He likes swings, trampolines, climbing, being outdoors, water and sand.  He is showing an interest in books, words and numbers, particularly liking words that show up in the credits – like ‘Disney’!  He is sociable and loving with trusted and predictable adults, and is able to tolerate a fair amount of change in his routine now we are using travel schedules and other visual clues to help him work out what is expected of him.  He is now moving beyond merely tolerating his sister and is beginning to play a game in the bath where they spit water at each other, giggling madly.

Archie now has a place in a special needs unit of a mainstream primary school 5 mornings per week, and we are pulling together resources to make a structured educational home programme, also part-time.  There are many studies that indicate autistic children need an intensive programme to make progress – we have found that we work really hard to introduce a skill, but it gets lost if we don’t constantly continue to reinforce it. 

We will be adding regular updates to the website to keep records of his progress and keep you informed about how we spend the funds raised.  We will also talk about the effects of the therapies and treatments we use.

Copyright 2006 Learning To Live. All rights reserved