Monday, 29 April 2013

A Father's Perspective

I decided to contribute to my wife's blog because I would like to share my side of the story.

The thing is - in many ways being the father of two boys on the Autistic spectrum is absolutely no different to being the father of any other family. You mostly do the same things on a daily basis. You care the same, love the same, you do your best to balance work and life and self. You try to find personal time to spend with your wife, and if you're lucky, some for yourself. You try your best to keep everyone and yourself happy. Sometimes you succeed. Sometimes you don't.

In many ways, however, I believe that my life is very different to other dads. This to me is a very personal blog post. I may come across as if I am bitter with the world, however that is not my intention. This is purely an honest attempt at painting a picture of the impact that our boys have had on our life.

Life expectations Part 1 (Play intro music...)

Before we had children I had lots of expectations about what my life and the life of my family would be like "with" children. At that time I was a founder, director and co-owner of a successful software development company. My work was consistently my number one priority. I was working 60+ hour weeks on average. My wife also had a successful career - she was a senior nurse specialist on spinal injuries and a key resource to multiple Orthopaedic wards. We did not really have money worries. Like a lot of families, our expectations were that my wife was to take a break from work while the children were young, then get back to work once they were both in school, if not before. My wife and I would both have fulfilling careers and lives, move forward in the world, pay off the mortgage and maybe even buy a rental property or two.

Like any parent, before we had children, I naturally had pretty typical expectations of what type of people they would grow up to be. They would be empathetic, kind and thoughtful. They would be brought up to understand the values that we both hold. They would be respectful to their parents and other people. They would not have to be geniuses, but would be successful at school and life in general. They would be happy. They would be (as any children are) challenging but overall hugely enriching to our lives. They would grow up, get married, have kids... and hopefully look after us when we are too old to look after ourselves.

Life with Autism

So how exactly is our life different? It's a bit hard to explain. Normal life is pretty hard. There are bills and money worries. Marriages and other relationships go through good and bad patches and priorities change. Work can be challenging. Loving yourself and developing a feeling of self worth needs constant work. One's health might present challenges.

Now - imagine if on top of this "normal" level of challenge your family was in a constant state of crisis. Imagine a hypothetical world where your child has the social maturity of a 3 year old with the vocabulary, strength and speed of an 8 year old. Where your child suffers crippling, acute and unpredictable anxiety in what seem to us to be normal, everyday situations, exacerbated by even small deviations to routine or simply things not turning out as they had expected. Where your child interprets sensory input that all our neurotypical brains deal with in a structured and predictable way by hugely over or under compensating for noise, touch, sense of location or movement, and even sense of relative position of their body parts to each other. Where your child's behaviour is frequently hyperactive, making it difficult to engage in a conversation, never mind constructive activities or learning.

What would this do to YOUR family?

I'll try to explain what impact this has had on us. Jen's blogs are mainly about the effects of Autism on our children. I would like to balance this with an insight of the effect on a family as a whole.

Meltdowns. Jen has already posted about meltdowns. They can last from 20 minutes to 2 hours. What can cause them is sometimes predictable, but mostly a mystery. It could be sensory - noise, visual, crowds. It can simply be that something happens that was unexpected. An example - Every morning James wakes up first between 5:00 and 6:30, jumps on me in my bed and badgers me until I go downstairs with him to play. One morning he slept in until 7:00. We thought we had gotten a lucky lie-in. Jen and I were up by the time he emerged. Instant melt-down because the morning did not unfold the way he had pictured it. Meltdowns cause  a lot of stress to us as a family, because of their unpredictability and severity. Most of the time I need to restrain James to stop him from hurting himself, Ben or property. He will spit, scratch, head-butt, bite, kick, punch, throw anything he can get his hands on and use the worst language his 8 year old brain can conjure up. Once a meltdown is finished, he has no recollection of the event. No remorse. There is absolutely no point in even discussing an event with him afterwards. Meltdowns are out of his control. They happen to him - they are not caused by him. During a meltdown all I can do is restrain him as safely as I can. All I can do afterwards is to love him more, cuddle him, tell him everything is alright and pick up the pieces - usually all over the room!

Sensory Diet. We "feed" our children a carefully constructed sensory diet that consists of proactively alternating physical and mental activities throughout the day. We have got sensory toys. Chewy toys. Stretchy Lycra blankets for wrapping up. Bouncy swings, hammocks and trampoline and other "movement" related equipment adorns our garden. We now have an entire room in our house dedicated as a "Sensory" room. If we don't we get it right, we get meltdowns. "Proactive" means that we can't wait until we see things going pear-shaped to take action. By the time the behaviour escalates, it is too late. This means you have to be vigilant ALL the time. We can't just leave the kids playing in the back yard while we get on with chores!

Outings. I remember when James was 2 (before his diagnosis). We had a great coffee group consisting of 11 other couples and we met frequently. It soon became apparent whenever we were at other people's houses that all other parents could sit and converse in a civilised manner, sipping cups of tea, while their children were playing quietly with dolls or with their friends in the garden. Not once did it occur to the other parents to check on their kids - if something was amiss, they would hear it or their kids would come running to them. Usually one parent of each couple would attend. Jen and I on the other hand would both have to come and play tag-team. One of us would spend snippets of time making polite conversation while the other was running around after James trying frantically to stop him from upending boxes of toys, climbing on furniture, breaking ornaments, running away, pushing or displaying otherwise inappropriate behaviour towards the other children. Every outing was extremely stressful for us. At this stage we were relatively clueless. We thought we just had a live-wire. Now we have two! The stress has not gone away in the last 5 years since then - in fact outing-stress has increased. EVERY outing is stressful. We worry about our children because their behaviour is unpredictable. We have gone to people's houses with our children and had the hosts come up to us afterwards and say "Oh - your boys were good today, weren't they?". What they didn't see was that we had to be really onto it the whole time we were there and could not relax for even a second, shadowing our kids the whole time. They didn't see James have a meltdown behind their garage from anxiety caused by being around lots of other kids, where I had to restrain him for half an hour during a meltdown. We try hard to let people see the best of our boys and for them to have the least stressful and enjoyable time while not at home. But it's hard work.

Planning. Everything has to be planned. My wife is an expert at planning and she is amazing at it. I try most of my days trying to live up to her in this regard and I am afraid I fail miserably. It's hard enough for "normal" parents to get everything packed to get out of the house for an outing. We need to not just get all the gear packed and get clothes and shoes on our sensory kids (which in itself can be very challenging and lead to meltdowns), but also try to anticipate the 1000s of things that could possibly go "wrong" while we are out. Have our boys had the right level of sensory input before going out? Do we have an escape route if things go bad? How long do we think they will cope for? Will it be busy? Noisy? Will there be queues? Have we brought the right snacks with the right textures? Is it safe? Will there be little kids there? Bigger kids? The list goes on.... It takes a huge amount of energy. Sometimes we just chose to stay in.

Constant Supervision.  Most people don't get this when I try to explain it. They drop their children off at birthday parties and leave them under other parent's supervision without any concern at all. They go to the beach and can fall asleep on the towel, leaving their kids quietly building sand castles. They can trust their 8 year olds to walk to school by themselves.  We could never consider these things. Jen tried walking James and Ben to school part of the way a couple of times (this was only a 10 min walk) and she gave up. It was just too hard to do - James kept attacking Ben while they were walking, and that was while she was actively managing the situation. We would also never attempt to take our children to a proper sit-down restaurant. We do McDonalds, but that becomes difficult after about 20 mins (we just get our food down and then it's pretty much time to go). I think last time I took them James was standing on the back of the built in seat while balancing with hands on the table while repeatedly shouting "chiiiii" loudly.... In this instance you might think that firmly telling him to sit down and stop doing that would work. It doesn't. He was not misbehaving  - he is doing it to regulate his sensory requirements which weren't being met. Can't be cross with him for that, but definitely time to go home! Most people wouldn't think twice about taking their children to a restaurant, but for us it would be a disastrous outing.

Carers (other than Mum and Dad). We recently had a family member from the UK stay with us as an Au Pair for several months. She was fantastic with our kids, but it took weeks of constant exposure before the boys would sit and have a cuddle, or be put to bed by her. When James meets someone new in our house, he cowers, doesn't speak and won't interact. He is anxious around strangers and takes a very long time to warm up. We cannot just introduce someone that comes a couple of hours a week, or even more impossible would be to just drop James off somewhere unfamiliar, even if designed for special needs kids, mainly because of his anxiety.

School Holidays. School Holidays are like taking all the challenges we have during term-time and putting them on steroids. We can't do carers. Entertaining and looking after our kids even for a 4 hour stretch is challenging and hard work. In holidays Jen looks after both of our boys for 9 hours a day, every day. Put that together with the fact that all of the things that cause my kids to fall apart (crowds, queues, noise) are multiplied in holidays, because everywhere you go has lots of kids. Rainy days are especially hard. Name three places where you can take the kids in-doors that does not involve someone else's house, or a crowded place during school holidays.... two? Can you do one? Now try finding one a day for six week. Jen is my hero. I don't know how she does it without going completely insane. By the end of every holiday she pretty much is.

Self awareness and responsibility. When babies turn into toddlers, the world is all about them. There is no perception of other people as individuals, their needs or feelings. Their world is all about how they feel, and their wants and needs. When they grow into little boys and girls, all of these things are naturally learned. Children on the Autistic Spectrum struggle with empathy to various degrees. James logically understands the concept of other people's feelings, but he does not innately feel it. In many ways his social awareness is that of a toddlers, even though he has the intellectual capacity of an eight year old. This creates many challenges in our life every day. He cannot take responsibility for his actions, because to James, the world revolves around James. A scenario: Ben makes a noise that James doesn't like and he spontaneously physically attacks him, making him cry. James will feel completely justified in doing so because he only perceives how he felt during the interaction, that the noise annoyed him, and therefore he was justified in retaliating. He does not understand that Ben did not intend to annoy him (Even though he sometimes does) or that attacking Ben stands in no relation to the "crime" committed. If I talk to him afterwards, then he will maintain that "Ben started it". The only thing that matters to James is how the noise made him feel, and even after he is pulled off Ben (who might be crying), be will still be angry with him for making the noise, and will continue to attack if I let him. His anger may then even turn on me for having the "audacity" to pull him away and he may feel wronged for not being allowed to carry out his "justice". A meltdown is likely at this point. This is also the reason why the "Naughty Corner" or "Time-Out" does not work with James at all. And believe me, we have tried. It wasn't until we understood our children better that we stopped persevering. James struggles to relate his actions with consequence. If James does something that he was told several times not to do, and then gets told off for it or is shouted at, he will only remember how the interaction made him feel (the world revolves around James) - not that he caused it, often resulting  in Meltdown. This causes constant friction between James and Ben. What makes it harder is that they can play at times for long periods (up to an hour) and all will be well. It all depends on how well regulated James is with his sensory needs - this is why the sensory diet is so important. In the end the harder we work to regulate his needs, the better everyone's day will be.

Siblings. Ben has his own challenges. He is on the autistic spectrum, even though not as severe as James, but he has lots of issues related to Sensory Processing. The biggest challenge, however are his interactions with James. Don't get me wrong. James and Ben love each other. They are each other's best friends. They play together, laugh together, do crazy things together. However since Ben was a little, he has had to deal with his brother's innate inability to understand empathy. This means that things like sharing, respecting each other's property / toys or need to spend one-on-one time with parents is very challenging. For example, James gets very jealous if I spend any time with Ben alone (even if I spent time with James previously). James' world is all about James and all he can see is that he is not getting what he needs. James will generally sabotage anything that we try to do with Ben. If they both get a toy, James invariably changes his mind and wants the one that Ben got. He will then pester Ben and will not let up (this can go for hours) until he gets what he wants. We persevere hard to protect Ben's rights... but most of the time Ben gives up himself and actually gives James what he wants to keep the peace - that is Ben's survival mechanism. But it is learned helplessness. WE find it hard to stand up to James. How can HE? Life is hard for Ben, because Ben DOES feel empathy, and he is starting to see that what is happening is not fair. We struggle to introduce effective consequence - when we have tried, no lessons are learned. The loser in all this is Ben, as we tend to divert around rather than confront James' behaviour or "give in" to keep the peace. We are only human. As parents we beat ourselves up about this frequently, but haven't found a good solution yet.

Respect and Consequence. This for me is one of the hardest things to deal with as a dad. I always thought I would have to pick my battles, but that my children would do as they are told when it was important. I have had to swallow my pride a thousand times. Bite my tongue a thousand times more and let things go. I can tell you as a grown man and father, this is one of the hardest things to do. How would you feel if your eight year old child called you four letter names and kicked / punched and spat in your face in the supermarket? Would you let it go? "No way", I hear you say - "they would be in their room without supper or video games faster than you can say - Super Nanny". Now what about if your child couldn't help it, and the reason for the behaviour was that their environment made them so stressed and feel so unhappy that the only way they could tell you was through emotional outbursts? Mmmm - not so simple now "Would probably let it go then" I hear you say. But what if there was a fine line, and sometimes you weren't sure if the behaviour was entirely involuntary? I am only human. I have many times lost it with my children and yelled at them when they have repeatedly pushed all my buttons and then later on had to eat humble pie and apologise to keep the peace - Usually while looking at James' traumatised face long after the event while he is huddling under a table or under his duvet. My kids don't do being shouted at. They don't just get shocked into self analysis and introspection. It traumatises them. They completely fall to pieces. I pictured this part of parenting very differently. Isn't it the child that is supposed to come out of their room once they have thought about what they have done wrong, having learned a lesson and then humbly apologise instead of the father? After all, I am supposed to be the man of the house, and hold authority? Apparently not. I have learned and am still learning. My children  constantly redefine and challenge my understanding of right vs wrong, intent vs purely emotional response, "should have done" vs "not capable of". Consequence in general is tricky. It only works with my kids if it's short and immediate. Threatening to remove a privilege the next day or in a few hours doesn't work. James' life is all about James. He doesn't easily connect consequence now with previous actions. He will simply feel unfairly treated and melt down, and not learn from the experience - and then everybody suffers. Give me a good solution and I will be forever grateful. If your solution contains the words "sticker chart" or "time out" you will probably be wearing my coffee :-)

Acceptance. Being a parent of a child / children with special needs is a journey. I believe a large part of this journey is acceptance. Acceptance that something about your children isn't quite going as expected. Acceptance of your child's diagnosis. Acceptance of all of your child's limitations, both growing up and likely to still be there as an adult. Acceptance of the impact on your relationships with friends. Acceptance of your need to advocate and fight a thousand times harder than most people for your child's rights - at school and everywhere else. Acceptance of the impact on your family, your relationship with your wife, your available choices. Acceptance of the fact that your family's financial position will be severely affected long term. Acceptance is a bitch, but absolutely necessary. Not "accepting" results in resentment. Living in denial means you are surprised again and again when reality smacks you in the face. So part of our journey have been lots of "aha" moments for Jen and I. Each one is hard and involves a grieving process, but improves our lot in the long run - and it seems to get easier the more we do it.

My Wife. She is amazing. I don't know how she copes sometimes. Autism in our family has had the most significant effect on her. When Ben was a baby / toddler, she not only had James' extremely challenging behaviour to deal with as well as a new baby, but also Post Natal Depression. She single handedly (during working hours) looked after two boys with special needs for more or less seven years before they were both in school before now finally getting a few hours a day to herself. She has had unbelievable ups and downs. I know how challenging looking after my boys is.  My hardest day at work is not as challenging as managing both my boys on an average day. Many many times over the years I would come home from work to find her literally at the end of her tether or collapsed on the couch, incapable of anything. She is a very strong woman, but she needs me. I am her only source of relief at the end of the day, and generally I take over from the moment I come through the door.

Personal space. This brings me to one of the other things that I struggle with personally. Personal space for me is very precious because there is precious little of it. Because the strain on my wife is so great on an ongoing basis, any personal space that I insist on directly impacts on her by making her lot harder. I am never in the house by myself, for instance. The only time I have to myself is for about two hours in the evenings, when the boys are in bed, and then most of the time I have no energy or desire to go out to socialise with anyone. My wife lives for the weekends, because it is the time for her to let go and get someone else to take over. If I choose to have my personal space time then, I am effectively asking her to work on her "day off". So when I leave Friday night drinks at work early without having a beer it's not because I am being antisocial. When I decline an invitation to do something with mates in the weekend, it's not because I don't want to go. I am making a decision to put my family's higher needs before my own enjoyment - and I am truly at peace with that (See Acceptance above). I consciously weigh up the relatively little enjoyment I will get from an hour of socialising over drinks against an hour where the rest of my family is struggling at the end of a long day, and most of the time, my family wins. I also (unfortunately for me) cope much better with lack of sleep than Jen - so almost all of the lie-ins go to her - a situation that we are working to resolve.

Sleep issues. Until very recently our boys were very challenging to put to bed. It would routinely take two hours every night to get them to sleep, and it would take both of us to do it (we would take one child each in separate rooms). For various reasons but mainly anxiety and hyperactivity they both found it impossible to go to sleep unless a parent was lying in the bed next to them until they were sound asleep. Even then, there were many, many meltdowns at bedtime and for years it was always a very difficult time of the day. We used to smile when people invited us to BBQs "with kids" with a kind offer of a spare room to put the kids to sleep in. We have now more or less solved this problem by giving them Melatonin before bedtime.

Marriage and Relationship - We have not had a single night together away from our children in 7.5 years. We have in 6 years not once woken up peacefully without a child jumping into our bed earlier than we were prepared to wake up - we have tried very hard to change this behaviour but with no success. Romance in the mornings? Forget it :-) In the evenings we are generally exhausted and our time together tends to not be quality time. Our weekends revolve all around our children as they are totally demanding of our attention. We have one saving grace - my father is able to look after the boys for us once a week on a Saturday for a few hours. During this time we tend to either do the weekly shop, go for a walk, or more often than not just collapse on the couch for a snooze! Our Marriage seems to come a sad third place and  doesn't seem to get much investment in either time or energy. You might think that this is not sustainable, but we have reached a kind of peace with this. It's as if we have both decided independently to put our relationship "on hold" because diverting energy from our children to our marriage always seems to back-fire. I believe this is actually a sign of how strong our marriage is - this is not something that worries us greatly, and is another one of those "acceptance" things...

What makes it all worthwhile? We value the little stuff. We might only go "out" for an evening once every three months, but when we do, it's a special occasion. We don't go to the movies, we go to Gold Class and make it into an experience. When our kids do achieve things this is hugely rewarding. These are normally things that parents of neurotypical kids wouldn't even get out of bed for - for example a while ago James managed to not only attend school assembly (at this stage he couldn't), but with careful preparation and management by his teacher aides he actually stood up in front of a crowd while his name was read out. This was a huge thing for us and we were both very emotional.

Life expectations Part 2 (Play credits music...)

So what are my life expectations now? Well, not quite the same as before we had children :-) (See paragraph on Acceptance). I expect my children to be the centre of my (and my wife's) life for the foreseeable future. I expect that my wife may never go back to work, or if she does, it will not be a full-blown career. I expect that due to me being the sole income earner, my career will be even more essential  as a result. The need to balance my work/life to accommodate my family's needs will continue to put more pressure on my ability to put the energy into my work that I need in order to succeed. As a single income family I don't expect us to have any substantial disposable income for the foreseeable future, (and the rental property / bach is not looking good :-). Society is just not geared up for or supportive towards single income families- otherwise the government would be more seriously in support of Income Splitting for example.

For my children, my only hope is that they will eventually have their independence, friends, their own jobs and money, and possibly even get married one day. There is no reason why they should not be capable of this. I am however under no illusion that the success or failure of this expectation sits squarely on my and my wife's shoulders. The alternatives are unthinkable to us, but the reality is that there are many examples of failure, and the spectrum of what could be deemed "success" is obviously far from black and white. I expect it to be a very hard journey with successes, but also significant setbacks. I expect us to have to parent 10 times harder and put 10 times more energy in than most people just to help them become functional members of society. Having spoken to numerous people that have been there any got the T-Shirt and now have adult children with special needs similar to ours, these expectations are absolutely realistic.

Ensuring that my kids have the tools, self confidence, self regulation skills, knowledge and ability to manage their unique challenges in a world that mostly misunderstands them - and keeping them safe while they learn these things - is now my primary goal in life.

If you are still reading at the end of this very long post, then I thank you very much for sticking with it! If sharing these quite intimate thoughts with you has helped you gain some insight into Autism, then I have succeeded.


  1. Very moving post indeed.
    Thank you for sharing.

  2. Thanks for sharing. Very insightful and yes, moving.

  3. Wow, Stephan. I don't really have the words, but I can only say that I admire you and Jenny for your strength and courage. You are both doing so much to create awareness about life with autism. Heleen x