Wednesday 30 January 2013

As I drove to collect my son the next morning, I thought to myself  "he will be fine once I get him back to my brother's and he starts to play with his cousin" Sadly this was not the case, he was really quite traumatised by his time with his mum. I think she had become some what detached from him in the few short months that we had been in Scotland. She had been working in a local bar and by all accounts living the high life, she had forgotten what it felt like to be a mum. Although I had told him he was only staying for a little while,  and we would both be returning to Scotland,  I am sure he thought it might be a permanent arrangement  It does not give a very good impression of his relationship with his mum but at the time I think she had some deep seated emotions about having a child with autism. Not because it was autism,  although as I have said before I am sure she herself is on the spectrum,  he could have been born with another set of life challenges and it would probably have garnered the same reaction. For her I think, when her dreams of being a mother did not fit the reality, it was too over whelming.

She did not,  and has not,  talked to me about this so I can only guess,  but the mother and child bond did not properly form. It was left to me to somehow be both parents to him.

He did not come out of his state of "shut down" for some days,  it was not until I told him we would return home early that he started to get back to his old self. I arranged with his mum for one more visit,  the next day of two hours,  and then we would head home. It was like all the progress we had made in those four months had been wiped out. I had learnt my lesson,  to never take any signs of progress for granted,  to never put him in a position that could jeopardise all the good work everyone was doing. I think his mum learnt a lesson too. Unless she was willing to work a little harder at their relationship this was always going to happen.

After I collected him he stuck to me like glue,  I only got some time to myself  when he fell asleep,  but it took what seemed like an age before he did fall asleep. The next morning I explained very carefully to him what was going to happen and looked deep into his eyes to see if there were any signs he understood, not a flicker. I then took him to the local supermarket to buy the food he liked to eat whether it was good or bad for him I had to get something into his belly.  I seem to recall he had chocolate muffins for breakfast that morning washed down with a kit kat. Reluctantly I took him to see his mum, comforted by the thought,  it was only for two hours. I carried him from the car explaining over an over " I will be back in two hours then we will be going back to Scotland. okay? ".No reply. She took him from me and held him in her arms and I think she held him like that the for the whole two hours. When I came to get him he leant ever so gently towards me gradually detaching himself from his mother. I could see the hurt on her face. The seriousness of the situation was finally sinking in ...

Monday 28 January 2013

In the October of the first year of his new school the mid term holiday loomed, I felt strongly obliged to take my son to see his mother, it seemed fair as I was not working and she was, also we would be able to visit my brother and his family.It was difficult at that time of my son's life to really tell if he was happy or excited about  going to see his mum. She had phoned him intermittently, despite me asking her to pick a day and time and pre warn me,  their conversations were always very stilted and never lasted more than a few minutes but understandable given his lack of language and her inability to except the new circumstances of our lives.   It was a long drive and as was usual he listened quietly to the 80s music I was playing on the car stereo whilst looking out of the window watching the world go by. I organised the trip so that it would pass into his sleeping time, the idea being he would sleep for most of the journey. He did sleep but at each rest stop he awoke bright and breezy I took this as excitement at the anticipation of seeing his mum again.I did not share his feelings.

The arrangement was that we would sleep the first night at my brother's house then I would take him to his mum, where he would sleep for the next two nights.Now that on paper sounds perfectly acceptable since before we split she was his main carer. In actuality this proved to be a disaster for my son .I stupidly did not prepare him for the fact that my brother had since moved to a new house, this completely disorientated the poor lad, and with little time to adjust he was whisked of to his mum. She still lived in the same house as before but by this time she had over filled the place with lodgers, so it had a completely different look and feel to it. she and I were ill prepared for this visit it was clumsy on both our parts and in hindsight I should have taken him to my brothers to sleep instead of leaving him with his mother.

Not long after I left him with his mother he went into protect mode and shut down. No eye contact, no speech only to say "where is Dad" and he said that a lot as I later found out.

I had arranged to meet up with some of my old friends, we were in a noisy restaurant being noisy I was having a good time, it was the first night out I had had for four months.I did not hear my phone and it was much later when I noticed a missed call, his mother had left a message, and as I listened to it I began to panic. "I don't know what is wrong he wont talk or eat I have tried taking him out he has just shut down" Well I immediately called back,  "Is he okay? I asked. "Yes" was the reply "He is just very quiet and keeps asking for you" Then I really started to panic. But what to do? I did not want to cause a scene, go to the house and take him home at such a late hour, I thought that would cause him more trauma.I decided to give her the benefit of the doubt, and let them both tough it out. I would collect him in the morning I thought under more normal circumstances...

Sunday 27 January 2013

I felt like it was important for us to get out in the evenings after school,  partly because I wanted to tire him out but also because it kept him occupied with something else other than me. When we were at home he would be very demanding of my attention I suspect out of a feeling of insecurity. In that first term of his new school he had a lot to contend with, his teacher told me that she was not going  to give him homework because the school day was quite enough thank you, she felt that he was under a certain level of stress at school just trying to stay focused and coping with all the other stimuli surrounding him. So when the school day was done it was done and we had to fill the time before bed with something. We went  to shopping malls, we went to soft play areas,  we went to his favourite coffee shop where he would eat mini muffins, (that was something in his belly).

After a couple of months I signed him up for a dance class, not formal dance but free expression dance, where he could do what he wanted without any pressure to preform. At the very first lesson he did nothing, just stood in the corner with a sullen look on his face, but his teacher was completely unfazed, by the end of the lesson I think he saw how much the other children  had enjoyed them selves. For at the next lesson and there after he was champing at the bit to get involved. Unfortunately his lesson clashed with a speech and language appointment  which was to be once a month, on our first visit I explained to the speech and language therapist  that this was the case,  and she replied to this saying "I think he would get much more benefit from a dance class,  than with me. I  would be happy for him to attend the classes rather than come here." I have to say I was a little confused but it started me thinking about the deeper aspects of autism and it's effect on my son. It accured to me that my son was probably very aware of words and even how to use them but he was not inspired to communicate in this way. Dancing on the other hand inspired a deeper reaction,  it got him excited,  he saw the response it evoked in others.She was a unique lady his dance teacher.

That being the case why then was this not available to all children, why as a parent was I having to go and find these things. Why was a highly qualified professional not doing something about turning her speech and language therapy sessions into a dance class. Was she thinking that every fourth Friday she was now going to be able to get home early ...


Thursday 24 January 2013

With everything in place and my son settled at school, life fell into a routine and my autism education really began. We always had a bond my son and I, but never before had we spent so much time in each others company. Each school morning brought its own mini challenge, perhaps because he had so much trouble sleeping. It was certainly why he was so groggy in the mornings. I would stand by the bed (still do) and after waking him would wait until he got himself out of bed, otherwise he would just lie down and go to sleep again. I discovered that if I got him up at least an hour before ablutions he would be sufficiently awake for school. Children's morning television  programmes were great at sparking his brain into action. It occurred to me that  when he did finally get to sleep his sleep was very deep. I am not sure he knew his own name or who I was on first waking.

I could get him to drink milk in the morning, but he would not eat.About ten minutes before it was time to go to school I would take him to the bathroom and encourage him to sit on the loo, then together (after a fashion) we would wash his hands then clean his teeth. He hated water on his head so he usually went to school with hair akimbo (not a problem in the winter as he wore a hat). For the first few months of starting his new school I would carry him on my shoulders to about one hundred yards from the gates. At first I did this because it was the easiest and most efficient way to get him to the school, but then it became routine. As any parent of an autistic child will tell you it is very hard to break an established routine, especially if the child particularly enjoys the activity. "Why not just tell him to walk?", I hear you say. Trouble was when I tried that he became like a rock and would not move. He would walk about two steps then step in front of me and say, "Carry", and then not move. I would try again and the same thing would happen. I am sure we could have repeated this little dance at least 50 or  60 times but we just did not have the time. I would have to win the battle another day.

 This habit of his, demanding me to carry him on my shoulders, persisted for some time and it also happened at other times. In fact any time we were going to be walking for more than a few minutes I  would sometimes make him walk by saying, "Walk past five lamp posts then I will carry you." Or, "My shoulders really hurt you'll have to let me rest." Eventually after some months I convinced him that growing boys did not get carried everywhere by their fathers. He must have observed that the other children on their father's shoulders  were considerably smaller than him.

The lesson here was, although some routines can encourage positive behaviour, I should be careful or I might find myself locked into behavioral routines that could last weeks, months, or even years.

Tuesday 22 January 2013

The school day is a little over six hours long and at first not working was very enjoyable. After dropping my son at school I would walk home, have a coffee, read the paper, do some housework, and maybe take a nap. A perfect day. But it could not last because it soon became boring. Having spent the better part of my  life working 60 or 70 hour weeks in the catering industry my days were beginning to feel a little empty. I had to think of something I could do for work. Part-time while my son was at school, but it had to be flexible because I would be the only one able to look after him if he was sick. Also, there would be the occasional appointment for speech, language, and occupational therapy, and of course doctor and dentist. I was told that on top of everything else I could also get a carer's allowance, meaning I would not have to work at all. But to me that was not an option, I had to have a contrast to the job of looking after my son. Something to take me out of myself you might say.

So what to do? There are not a lot of employers out there willing to give work, all be it part-time, to someone who may or may not phone in and say he's unable to come in because he was looking after his sick son. About one in several thousand, I would wager. Again good friends came to the rescue. As luck would have it, two friends of mine shared the ownership of a black taxi cab. They offered me the day shifts and told me not to worry about only being able to work six hours; if there was an emergency they had no problem with me making a late cancellation. The only thing I had to do was pass the 'topographical exam' and fill all the other criteria required by my local council to obtain a taxi drivers licence. With the remaining money from my redundancy I set about acquiring said licence. It involved a great amount of study and it was a few weeks before I got my sluggish brain into gear. I also attended night classes twice a week to guide me to eventually passing the exam.

The first hurdle was leaving my son with my nephew while I attended my night classes. At first it was very difficult to leave him at my nephew's flat. My son would wrap his arms around my legs and he had to be prized off me, then I would run to my car and head for the night class. Ten minutes later I would receive a text saying everything was fine. In fact over time my son started to look forward to these evenings because he  was the centre of attention among my nephew's girlfriend and two other flat mates.

Seven months later I was the proud owner of a taxi drivers licence ...

Monday 21 January 2013

Kate also prepared a chart for us to complete which listed the days of the week, and had a place to write what he had eaten and when. Each time she came we reviewed the chart. This was a good motivator for both of us, as I now had a tool to help me get good food into his belly on a daily basis. And I did not want to be embarrassed by putting something pathetic on the chart, like chocolate biscuits for lunch.

At around the same time as Kate was coming to our house to help improve my son's diet he was also spending time after school at a friend's house. With a lot of encouragement from me and the mother (also a single parent) of another boy in his class my son had formed a friendship. We, or I, took them to soft play or McDs, or the park, and so on, trying hard to nurture a friendship. At first his class mate was a little confused about some of my son's behaviour and also some of the things he said; they even almost came to blows. Eventually though, despite their differences, they did make friends and his classmate is now a great protector of my son and also his biggest supporter at school. They now regularly spend time together, although no sleepovers yet.

His classmate's mum, a great Portuguese lady, fell for my son very quickly (and why would she not?). When my son was at her home one day after school she prepared a meal for both boys, chicken and rice as I recall. She noticed my son, although sitting at the table, was not eating. He was looking at the food as if it was for someone else. So without thinking she just started to feed him and he responded by eating what she offered. Now she was unaware that he had never in his life eaten chicken or savoury rice, and he, I think, was basking in the warmth and comfort of her motherly attention to him. But that is only a theory. I don't really know what it was about their connection. The fact was though, he was eating good wholesome food for the first time in his life. Although he only ate that food when he was with her, and at her house. At first if I walked in on him eating he would immediately stop. My son was about seven and ten months at this time, and it seemed to me that maybe he was putting it all together about food and why we eat and why we try to eat healthy ...

The fact was that with input from several good people he was now eating a healthy diet, and now he eats what I cook for him.It is a bit of a juggling act to fit in meals he will eat with his pedantic nature, grudgingly I provide him with certain meals on certain days. I would rather he was more random in his choices. I also find myself taking him for, take out, french fries on a very regular basis and also to a certain coffee shop where he likes the mini muffins. I do this in an effort to try and vary the different flavours that hit his palate and also because I want him to eat. He is prone to gastric problems and can be laid low with a sickness bug, although less and less these days.There was a time when he would be effected with this bug every three to four months. consequently he would loose weight and then I  would have to feed him up again ...

Sunday 20 January 2013

I was talking to a parent of an autistic boy, and he was telling me about how his wife had tried a recipe for chocolate muffins which included aubergines. The idea being that surreptitiously she was feeding their son vegetables. Now I see the benefit of this, but ultimately they, like me, will have to support their son in learning how to eat healthily without going to such extreme measures. For obvious reasons.

My first attempt at getting professional help with my son's diet was through the NHS. I got a referral from his pediatrician. It took three months before I got an appointment for my son. The dietitian spent the precious 45 minutes we had going over the questions that had already been asked in a form that I had been sent prior to our meeting. She then advised me to try to encourage him to eat better, and made another appointment six months hence. Not very helpful. I needed to learn 'techniques' and 'strategies' for how to encourage my son to eat better. She could have told me everything she covered in the meeting over the phone. I was less than encouraged to return.

Some weeks later I received a letter from the child psychologist telling me about a new lottery funded charity that was starting in the city. They were being set up to specifically support autistic children. She told me to contact them pronto and get to the top of the list. This I duly did. Within a few weeks my son was allocated a case worker. After the initial meeting of signing forms and answering questions and so on the new regime began. All sessions were to take place in our home.

Few people at that time, on first meeting my son, were relaxed and comfortable in his company (no fault of his). His case worker was very relaxed. On their first meeting (let's call her Kate) it was as if they both already knew each other. Each session started with play and Kate was able to learn about the things my son was interested in. It was after the third session that she introduced the subject of food, by which time she was chatting to him like they were old friends. Kate asked my son if he would like to share a picnic with her every week so that they could try new foods. He agreed, and she asked me if I could have those foods ready for her visits. So every week for about five or six weeks they would go outside and lay a blanket out in our backyard and enjoy a picnic together. He tried ham, apple, rice, pizza, pasta bolognaise, chicken, grapes, orange even. As I watched them from the window of our flat (we had moved into a place of our own by this time) my heart was doing that somersault thing again ...




Friday 18 January 2013

When we first arrived in Scotland my son was five years and seven months old. His diet at that time of his life was very limited. It was embarrassing to me to reveal to anyone what he ate. He ate well up until about aged 18 months then he started to get very fussy. His mother, after trying with the healthy stuff, would end up just feeding what she knew he would eat: wholewheat toast with peanut butter or chocolate spread; cheesy puffs; cheesy oatcakes; dry cereal (chocolate flavor); kit kat; chocolate digestive biscuits; and yogurt. The yogurt being his least favourite and the most difficult to encourage him to eat. I read about a clinic in Austria that had a method of starving non or poor eating children until they were so hungry they would eat what was put in front of them. Worth a try I thought. After 26 hours I could deny him no more. I gave in and he tucked into several pieces of  toast and peanut butter. Such is the resolve of my autistic boy.

Of course many parents I spoke to had a story about how their child lived off chocolate biscuits or cheesy puffs for the first 12 or so years of their lives. But hearing this did little to comfort me. At least my son liked milk; he drunk a lot of that. Luckily he could not bear the taste of sugary sweets or drinks. Ice cream has not passed his lips. In his eleven years on the planet he has never come to me and said, "Dad I am hungry." My brother's daughter complains of being hungry at least three times a day, more if dinner is late.

In an effort to get at least one healthy meal into him a day, or should I say five days a week, I sent him to school with, yogurt, cheesy puffs, and chocolate oat biscuits. The latter I had manged to get him to like after a bit of trial and error (I chose the dark chocolate variety because I had heard it was healthier). Then it was down to his learning assistant to sit with him through lunch until he ate everything. For this I am truly grateful:  for her dedication and because of her obvious interest in my son's well being. He quickly learnt to trust her. On the basis of this trust he would try new foods with her (not with me, with her). I would send him to school with chopped fruit or carrots. Imagine my delight and surprise when he returned home one day and all his carrots had been eaten. Carrots became a part of his daily lunch immediately after that day.

I discovered a shopping mall near where we lived that had a famous burger outlet combined with a soft play area. I would buy him milk and he would entertain himself while I read the paper and sipped on coffee. One day he noticed some other children getting the kids meal which included a toy. "Kids meal, Kids meal," he said the next time we arrived. So I got one with milk; he got the toy, I got the burger and fries. After about the third or fourth time he sauntered over from the soft play area and gingerly tried one of the fries, without any encouragement from me. Very quickly he devoured the lot. A new food to add to his diet. No-one was cheering but they should have been. Inside I was doing somersaults. From that it was but a skip to get him to eat fish fingers ...

Wednesday 16 January 2013

Friend or not, I had to pay rent, buy food, and so on. My initial plan was to find myself a day job which I could be doing while my son was at school. This was a foolish plan. I did not reckon on my son's limpet like attachment to me whenever we left the 'family home'. Still, first things first: I took myself off to the job centre with the thought that I'd done quite enough organising for one person so maybe they could do some of the work for me. I also had to sign on. Another brother (for I have many) was on hand to look after my son while I attended my interview. He was actually fine with all of my family members, as if he sensed a connection.

Within about ten minutes of explaining my situation I was told it was more advisable for me to claim Income Support, so I was duly passed on to another representative of  the Job Centre - one who only dealt with lone parents (as we are now called). She listened to everything I had to say and asked me more than once if I  thought there would be a reconciliation with my wife. I am sure that is procedure, as families that stay together probably save the Welfare State a fair amount of money.

She then told me that given my son's circumstances it was not advisable for me to work, as he would need a settling in period.Also I was probably the most qualified to support him out of school, and after school club was not an option until he was more confident in his new surroundings. She then listed all the benefits I was entitled to, set them all up for me and told me she would see me in six months to discuss my possible return to work. As I made my way to meet my brother and son I was feeling slightly bemused. Having worked solidly since I was 16, I was now being supported completely by the state. That is what it is to live in a 'civilised' country. I had paid my taxes and national insurance for over 30 years; I guess that was one of the reasons why. Now I could really take stock and focus on my son's care. Thank you Welfare State ...

Tuesday 15 January 2013

I would have to wait until the school opened again before I could enroll my son, which caused me a degree of uncertainty.  I would only have three days before the pupils arrived to properly introduce him and get him used to the idea he was to attend the school. I need not have worried; the teacher was amazing and a perfect complement for his personality and additional teaching requirements. It was difficult for them, but they managed to get him a learning assistant for the mornings at least. It was clear now why I was recommended to get him a second diagnosis: without it the authorities would not have moved so swiftly into action.

Throughout his short life my son has been very specific about who he trusts and likes, about who he will work with and who he will not. As if by some divine intervention the two people, his teacher and learning assistant, who were going to have a great input in his life were a perfect fit. This took a great weight off my shoulders. I'd made an appointment to bring him to the school two days before they welcomed the pupils. The teacher and her assistant sat with him for about 30 minutes while the head teacher asked me about him and his progress. I also gave her all the reports and letters I had received about his care to date.When I collected him to take him home his teacher said, "He is a lovely boy, he is going to do just fine." I think she fell a little bit in love with him. Lucky boy! Lucky dad!

They decided that my son would be best suited to the primary 1-2 class, as they called it. Although he'd already done the first year in England he was still at an age where he would fit in with the other children. The school curriculum is different in both countries. The first year of school in England is more like an extension of nursery and the children start school younger, whereas in Scotland the first year is more formal.                              

 On the first day of school all the parents of the children in my son's class were allowed to accompany their children into the classroom, give them a hug, wish them a good day and say goodbye. Some parents were filming the event, others taking photographs. I did neither. I just watched him as he was escorted by his teacher to his seat. She sat next to him, talking all the time, reassuring him and making the event as stress free as possible for him. I felt honored and humbled by her actions and truly blessed. She looked up at me and mouthed the words, "He's fine; talk to you after school." I walked home a very relieved and happy dad.

Monday 14 January 2013

The good thing about my friend's house was that my son was familiar with it. He'd stayed there before on previous visits, and he also knew my friend well. At that time in his life he had very little language; even less in the first few days of our arrival in our new home. But it was obvious that for all his difficulty in communicating he knew exactly what was going on.

I felt the best thing would be to sleep in the same room as him while he adjusted to his new life; inevitably he ended up getting in to bed with me. His sleep had always been disruptive, with very erratic sleep patterns. The move had only exasperated that, and if getting a good nights sleep for both us meant sleeping in the same bed then so be it. I've never had a problem with him sleeping with me. I don't really know or understand what the child psychologists who are against it are going on about. It was not that long ago when whole families slept in the same room. I am at a loss to understand what it is they are trying to advocate. What kind of world are they envisaging with their credo? It seems to me that child psychology is a relatively new science (I mean teenagers were only invented in the 1950s) and everything that has gone before did in fact matter - and has great relevance today. Why do we have this popular notion that the childcare book has to be rewritten every few years? Any child, but especially an autistic child, needs all the love, comfort and security their parents can muster.

Having, to the best of my abilities, established us in our new home I set about contacting the authorities. I needed to get my son on their radar as soon as. If I was going to get the best care for him. My first phone call was to the head child psychologist, a prudent call as it turned out because she was able to put me in touch with all the other professional city run bodies pertaining to care for autistic children. She advised that a second diagnosis would be advisable, because coming from a local doctor it would get the attention of the school I wanted to enroll him in. Also the doctor could then refer my son on to speech, language and occupational therapy. I was also told about the mainstream schools that had language classes; a relatively new initiative designed to get special needs children more quickly into mainstream education. Not surprisingly the selection process for these schools was a long one (about 6 months), so first enrolling him at the local school was the best idea .What I didn't take into account was that in July all the Scottish primary schools are closed ...

Sunday 13 January 2013

At the time of our split we lived in England, I was taking my son with me to live in Scotland. Luckily for me I have a great friend who was living alone at the time in his three bedroom house. So it seemed like the best plan to live with him. His house was near a school in a good part of the city.

Because of the differences in term time between the two countries, and as we were moving in the summer, I timed it so he would only miss a short time of schooling, and I felt it would be better if he finished a full year before starting a new one in another school. I don't think I was fully aware of my son's complete trust in me because for the most part he never displayed any distress about what was happening. As long as I was by his side he coped very well. It was at night when his anxiety came to the fore he would not sleep for more than an hour or two then he would awake and come looking for me. He only really slept if I slept next to him.He never was able to articulate what was troubling him but it seemed obvious to me he was missing his mother. This broke my heart and compounded my feelings of guilt but I still felt I was doing the right thing. For in the month leading to us leaving, and after we had formally split, his mother withdrew even further from his care

I only had a small car which I stuffed with as much of our things as possible trying to choose the items that would bring him comfort. The main one being a blanket which he loved me to wrap him in like a Roman senate. I also brought an electric keyboard which he had great fun playing with.I don't know what we must have looked like as we traveled up the motorway in a car filled with stuff almost hiding him, sat in the back in his car seat.Of course he never spoke, content to listen to the 80s music I was playing, and watch the world pass by.I had thought and planned, and thought and planned some more, and as I drove I was thinking and planning  more, but really, there was no amount of preparation I could make ...

Friday 11 January 2013

I don't think I can ever underestimate how important the good people in my life are. Some family and some friends, all essential for the colour and character in my life. The trouble with my ex was that she made every effort to isolate me from my family and friends. Largely I think it was due to her insecurities that she did this, not really out of malice or hatred. She always found a reason why certain people should not be in our lives, it could be as simple as because they drove an S.U.V.
 
Luckily for me my amazing brother and his equally amazing wife made every effort to fit her stringent criteria for being allowed into our lives. It did not trouble them that they had to lie and agree with her often strange beliefs and philosophies. For without them and my once a week visits with my son to their sanctuary (or as they called it their house) I don't think I could have been able to carry on as long as I did before leaving her. My ex never deigned to join us on these visits so it was complete bliss to bask in the nurturing atmosphere of their home and break bread with them. Also my son made an incredible bond with their daughter, his cousin. In truth she was the first child he really played with, completely spontaneously.

I owe them a debt of gratitude they are probably not aware of; like a soldier on leave, or a prisoner on day release, I enjoyed a brief respite from a troubled marriage. I never spoke of her when I was with them, I think in an effort to enjoy the experience of being with them unfettered. It was my brother also who was my deepest confidant and, whilst he respected my desire to keep my marriage alive, he gave some very compelling arguments why it should end. Not least the fact that my son would do better without his mother: a sad indictment to her parenting skills, but none the less true.

Tuesday 8 January 2013

We are all of us prone to mildly psychotic behaviour; just witness people with their mobile phones.We function day to day just fine with our little foibles, keys in one pocket, change in another. Almost all of us routinely buy the same food every week at the same supermarket and so on.We do this primarily I think in an effort to bring security to our lives. More than 90% of us are not good at winging it. We need order, we need routine, but most of us can cope when that order and routine is disrupted. This is not the case with children who have autism. Adults who recognise they have autism cope better. They learn to understand what is going on in their thoughts and are able to better process the panic. But adults who don't know they have autism do not fare so well.

I have witnessed my son on many occasions panic when the order in his life has been disrupted. In the early days I would pander to his obvious needs, to the point of going back to the supermarket to buy the yogurt in the correct size pots, so he will in fact eat that day. Or rewinding tapes in the car cassette so he can listen to them from what he perceives is the beginning, thus avoiding his deep annoyance and dissatisfaction with life. It all affects him on a powerful emotional level and it took me several years before I began to understand what was going on and how to cope with it; to finally learning how to desensitise his reactions. Which could involve taking a small pot of yogurt he likes and emptying the contents into a large pot, but doing this in front of him. It might take more than one try.

As regards to adults with autism which has not been diagnosed I think I have learnt enough now to see that my sons mother is in fact herself autistic. Of course I am not a professional, I have no qualifications that give me the right to make such a bold statement. If this was true it would explain a hell of a lot because she was in fact faced with a child who was behaving in a way, although unsettling, that mirrored at times her own behaviour. For me it explains a lot ...

Sunday 6 January 2013

Looking back I now realise I was under a great deal of pressure. As my ex withdrew more of  her attention and care from my son so my work load at home increased. I tried to take some pressure off my shoulders at the restaurant by delegating more responsibility to my senior members of staff and by affectingly making myself a figurehead manager. But this, though an excellent idea I thought, back fired on me because I was then made redundant. My support staff were so good at their jobs the owners felt I was not needed. Truth be told, I was burnt out and not really capable of doing as good a job as I had done in the past for them. I was able then to spend more time with my son while I looked for another job, giving his mother even more opportunity to hand over the care of him to me.

I found another job which was about a 40 minute commute. As it was another managerial role it required a manager's focus. Sadly this I could not provide. I was now so concerned about my son's care that I could not give this new position the passion and drive it deserved. After a little over three weeks they asked me to leave. For someone who had managed restaurants for a great deal of his life, gaining awards along the way, this was a little demoralizing to say the least. But my abiding feeling through it all was relief because I was able to carry on being the main carer for my son. Also around this time his mother got herself a job, and that was that; she was gone like a bullet out of a gun. She saw an opportunity to get herself off parent duty and she took it. That was when I knew it was time to go, but with my son. I could never leave him with her as it would have been disastrous, if not catastrophic.

 It was not difficult to end the marriage. In reality it had ended some months previous. It was just a question of getting it out in the open and finalising the details. She gave no resistance to my request to take my son; she felt it would be better (because she was having far to much fun now). Her ego told her I would return within a few weeks. I knew that was never going to happen

Thursday 3 January 2013

I could not describe our marriage as made in heaven; made in a famous Swedish furniture stores discount department more like (fits together, looks good, but is not quite right and is unlikely to last). But it was a marriage and it was my marriage, and I was not about to give it up without trying to make it work. Every conversation we ever had about my son and his autism led me to believe that she was totally committed to his support. She worked very hard in his potty training, and that was not easy by all accounts. The last thing my son wanted to give up was his comfortable nappies; walking around in just underwear did not suit him at all and sitting on a chilly plastic bowl was not acceptable either. But his mum persevered and little by little she got him to give up his nappies for good. With a great deal of patience and soft reassuring words he finally relented and grew to enjoy this new experience. But it seemed that was the turning point in her commitment to his support. After that she was not so empowered.

The fact was we could not carry on as we were. I felt like I had two children. I would return home from work after a busy dinner shift, put my son to bed, then listen to her complaints from her day. Often she would ask me for a shoulder massage (you know the stress of caring for an autistic boy!). She would ask if I was making myself some hot chocolate, and if so could I make some for her. I would and she would then complain about it.

Most evenings I would watch the families that dined at the restaurant where I worked; they seemed to be a unit. They brought with them some of the atmosphere of their home life: warm, safe, loving, and above all nurturing. This was sadly lacking within our household and I knew we could not continue as a family for much longer. It was already affecting my work ...