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.

Friday, 26 April 2013

Being Kind To Myself.

I read this on one of my many facebook postings today. It was written by a Mum of a Special needs child. I hope she won't mind me using it for my blog. Wherever she is, I salute her.  

"I yearn for more time with friends and family. I have an authentically positive attitude and most often you see me smiling. I may even have this Super Mum thing down, am super busy and have enough help. But I am lonely. Being a special needs Mum doesn't leave me time to nurture and maintain relationships I really need. I could get super detailed here about the hands on caring for my child. (Do you remember when your kids were toddlers? That hovering thing you had to do? It's that plus one). The plus-some includes spreading my Mum love around to my other child and husband, who on a daily basis are put on hold, waiting for my attention. I don't have much time to call or E-mail my friends and even family.....and if they don't call or E-mail me, well I feel massive guilt about the time that has passed. More negative stuff that I pile on my shoulders. Getting out is tough. I miss the days when I had playgroups with other Mums, open-house style, dropping in and drinking coffee at a friends kitchen table with my child playing nearby"

I read this with teary eyes. I could relate to it completely and wholeheartedly. I didn't even realise that I was lonely until I read it. I thought that I had got over the whole "Normal" thing. I live with my "normal" whatever that is. It is my world and I live it just like everyone else. But it's true. I am indeed lonely. To those people that know me, I am a chatty person; a "people person". But my time and energy go into my boys, my husband and myself. There is so little left for others. As this Mum above does, even Stephan does not get my full attention.

 I have one very dear friend who calls me, E-mails me, makes the effort to come over for dinner, calls me with her news, shares her good times and bad. We make the effort to have a cuppa together at least once a week. She understands if I can't committ to something; she has taken the time to know me. I hope she can say the same about me. I know she will read this, and I want her to read how much I value her, and appreciate her and our friendship.

On the other hand, I am on first name terms with the Indian lady at our local dairy, she enjoys a good chat. I look forward to chatting with the Mums at school pick time. I miss those easy, open door friendships. I miss the person that I was. I'm learing to embrace the new Jenny, and mostly, I like the person that looks back at me in the mirror. Or maybe I am learning to like her. The person that looks back at me has more strength and determination that I ever gave her credit for. I am the queen of dusting myself off and starting the new day. I have learnt that patience can be learned, it is not innate. I can honestly put a positive spin on anything! Well, maybe on a good day........Another one of the things that I have learnt from my dear friend who smiles in the face of adversity all the time! 

The Guilt. I live with this gray feeling that has taken root inside me. I started to go to the gym, at least 5 times a week, sometimes doing gruelling gym classes for two hours. It was punishing. I didn't lose weight. I felt this insessant need to push myself harder, and harder. There were times during a Combat class that I would be crying for reasons I didn't understand. I recognise it now as guilt. Punishing myself for an act or omission. For shouting at James when he couldn't do something. For not giving Stephan enough time for himself or our relationship, or not protecting Ben from this volatile environment he is growing up in. For not maintaining or nurturing relationships with my extended family. For not calling friends. For not doing enough. Period. I beat myself up looking for reasons how I could have caused my kids Autism, how I could make it better and take away the things that make life so hard for them, make the whole damn world a better place for them to live in. For the whole damn unfairness of  it all.  I wonder how many of you reading this can make a list also? I suspect that I am not alone in these feelings. I suspect that we are all pretty good at guilt. I think the difference is that for me, it is literally like a grey cloud that I have to work hard to blow away. At times it consumes me and I become toxic. My weight watchers leader (inspirational woman, a serious force to be reckoned with) tells me that I need to be kinder to myself. I don't do gruelling gym sessions anymore. I run outside instead with some some good tunes on my phone. Or power walk. I make time to sit down for my lunch. OK, so I sit down for lunch and worry about whether my poor Stephan is sitting down for his lunch, and hope he is OK because he has been up since 5am, or whether James is getting his sensory diet at school, or if Ben is playing with the other kids or "going around my tree because the other kids are too rough". But, Rome wasn't built is a day, right?

My hope is that by learning to be kinder to myself, it will make me a better parent, more able to deal with the challenging behaviours that I have to be able to deal with. More able to forgive myself when I am not a saint. And I am no saint! I hope that my friends and family that are reading this will understand why I don't call or E-mail or drop round for coffee with the kids, or without the kids for that matter. Chances are, my head is already too full of guilt and I am working at being kinder and more forgiving of myself instead of punishing myself. I am sorry for not calling, or staying in touch, or forgetting your birthday. Spare me a smile when I do!!!

Stephan thinks that this blog is depressing! He thinks that people will read this and think that I am seriously depressed! My sister thinks that ALL parents can relate to The Guilt in some shape or form. The truth of it is that this blog is about what it is like to live with Autism, and this is my truth. It's not meant to be depressing, it's just my reality. My boys teach me things about myself all the time; I look far deeper into myself than I ever thought I ws capable of. I work hard at making myself a better person, not just for them, but for me too. I don't think that that is depressing. In fact it is one of the positive things about my life with Autism!   

Tuesday, 19 February 2013

My Sensational boys.

The other day, James was watching TV, and he sees something that looks like a kind of symbol. "Hey, look Dad, we've got one of those!!". Stephan had no idea what he was talking about so animatedly, so he asked James to show him. He took Stephan outside, and shows him a tiny stone with what looks like the symbol he saw on the TV. A tiny stone!!! (It was 2mm, Stephan has made me write). You see, James doesn't see the big stuff, he sees the detail. Detail is all around him. Add to that the noise that is louder than what you or I hear, he needs to focus on the TV, but all he can hear is the cicada outside, so he drowns out the noise by humming. Or making noises. They both do it; it's like a cacophony of sound! My boys have a constant need to move, they can't sit still for a second, asking them to sit still is an impossibility, unless it is on their terms. As I write they are sitting in their "W" position, orally regulating, making LEGO.

I don't want to bore you with jargon, if you want to know more there is heaps of literature out there, I know, I've read it. I still don't know if I get it, SPD, is very complex and subjective. My blog is NOT about literature and jargon, I might post some links to all you literature buffs out there, my guess is you won't read it, but I hope you read my blog.

Imagine a world that is loud, too loud and too bright. All day long you have been bombarded with so much detail, you have to somehow block it all out to make sense of it all. Imagine that everything is so loud and so bright,you've been dealing with it all day, and it is making you feel sick, and your heart is starting to beat faster. That noise so loud, you can't hear yourself think. Your teacher is asking you to sit still, at least that is what you THINK she said; you can't really hear her, you're trying, but that lawnmower right outside the window is so loud! There is a fly in the room, and it is taking all your energy to stop looking at it. The teacher looks cross.You know she wants you to do something, but what?!Your heart is beating faster, and all the kids in the room have moved from the mat now, Oh, but they are so loud!! All your nerve endings are on alert, someone touches you as they push past you and it feels like a knife has brushed against you.  Got to get out of here. Now. Teacher grabs you, she is yelling (everyone is always yelling, I'm not deaf, and your shouting is so loud it hurts!). You think she said for you to stop, but it's too late, you got to go. You run, fast, out of the noisy classroom, away from the yelling, past the noisy lawnmower. Oh no, some has got you!! You kick, scream, spit, ANYTHING to get them off me so that I can get away!

At James first school, he was put into time out for this behaviour. Again and again. He was labelled as naughty. So naughty in fact that, they were heading down the route of "disciplinary procedure". His teacher rang me at home to tell me that he was being naughty and could I please come and get him? What did he do, I ask? He spat, was the reply, I asked him to stop and he did it again. I went to school, and my James was terrified and he saw me and burst into tears, whilst hitting me. At 5 years old, he sat on his bed, crying, and telling me that he was a failure and that nothing was ever going to get any better.

Sensory Processing disorder. James gets as high as a kite, and there is nowhere for him to go but into meltdown. Nowadays, we are making sense of the chaos, and I think I can read him pretty well. I can prevent the hyperactivity, most of the time. And I have made it my mission to get inside his head!!  

The other day, we had new school uniforms, ready for the start of term. Ben, usually quite placid, seemed to be having a terrible morning. He forgot to brush his teeth, he is pushing James buttons which is not a wise plan at the best of times! On the way to school, I had to pull over twice to stop them killing each other! He is scratching everywhere, and is generally out of sorts. I wonder if maybe he is coming down with something? Even the usual cuddles are not cutting it this morning. "What is it Ben, can you use your words???" I ask him. "I just want my uniform off and I want to go HOME!!!", came the reply. Now, I have read about labels. I know that there are kids that even have to buy seamless socks because they can't bear the seams. We get to James classroom, and I cut out the label. He looks at me with these pools of big blue eyes, nearly with tears in them and watch as he very carefully, takes the label to the bin. Then he toddles off to his classroom without another word!!!  Touch sensitivity. For YEARS I struggled to get his hair cut. He HATED it. The other day, he was scratching his skin sore after his haircut, and raced to the shower when he got home. Afterwards, I asked him if that is why he hates having his hair cut. Yes, he says, it's because of the "Itchy, itchy".

Ben is the kid in school assembly with a chewy tube for oral regulation, and noise reducing headphones on, trying to get out the door. He only stays if I am there. He hates the singing, he says "it hurts my ears".

If he can't make noise to regulate his environment, he will chew everything in sight. If he can't make noise, or chew, he hides under the table. If he can't do that, he runs away.

James can be seen lying on his tummy on the teachers swivel chair racing around the classroom, to regulate, or make sense of, his environment. He NEEDS to run, climb, move if you want him to sit and do anything for any length of time. Equally, he needs pressure or proprioception to stop him getting hyper.  

Don't get me started on sleep! Asking a sensory seeker to lie down and try and sleep is like asking Ghandi to eat a pork chop. It's just not gonna happen. After YEARS of traumatic, late bedtimes, we have resorted to medication. Having our evenings back has been life changing. I LOVE having them in bed by 7.30pm, and I LOVE that getting them in bed and to sleep is not stressful anymore. If you are a parent reading this, I don't think that I'm being selfish, I just love having time in the evening. I love it. Did I say that enough?!

If you want to get to the nitty gritty of it, there are types of SPD. Ben is sensory defensive. James is a Sensory seeker. The sensory seekers are the kids that are the live wires, that actually SEEK sensory input to make his brain do what their body wants to do. The kids that NEVER stop and can't "calm down". I was the Mum at coffee group than ran after my little live wire whilst the other Mums sat and drank coffee and changed the occasional nappy. You know, nowadays, I can actually spot a sensory seeker by their mannerisms. They are just kind of erratic, and chaotic, and just, well, busy. All the goddamn time!        
Ben is literally on the defensive. Always trying to protect himself from the barrage of stuff that his brain has to make sense of. Occasionally, it gets to much. I get to school early so that he can go into an empty classroom, he struggles if he has to walk into a busy classroom and I will leave him crying. You can't MAKE Ben do anything. You can ask him and is is usually pretty compliant, but if he doesn't want to to it, nothing is gonna make him! We gave up on swimming lessons because he balked when they tried to make him put his head under the water. After 3 weeks of tantrums, we gave up, but determinedly carried on with swimming, with both of us in the water to make him feel safe.We didn't try and make him put his head under, but he did it in the end! Now he is a fish underwater but has not had a single lesson! 

So, I'm the Mum that is yelling in the mall, or outside school whilst my shouts of "STOP" go unheard. Spare my poor voicebox and my gorgeous Sensational Kids a thought. My sensational kids are not being naughty, they are just dealing with more stuff than you can ever imagine, in a world that doesn't understand them. They deserve A for effort every time. By default.

Thursday, 17 January 2013


I can't talk about James and Autism without talking about meltdowns. I know that you all use this term, and of course all kids get to the end of their tether, and tantrum. No, I'm talking about Autistic Meltdown. Anyone that has seen or been involved in one, isn't likely to forget it. For us, amonst other things, it is the hardest part of James Autism. Ben does meltdown, but it is never as traumatic as James'. They happen pretty regularly, he has trashed his room at least 3 times this week. During these meltdowns, he spits, swears, kicks, bites, head-butts, and he destroys things and property. We have bruises and blood to show for these episodes. Dealing with meltdowns and preventing meltdowns occupies most of my time with him. We have learnt a lot, but they are so unpredictable and although nowadays he can tell you after the meltdown what set him off, we can often not prevent them. Important point, DURING a meltdown, he is NOT in control of himself, his actions, his emotions, or his behaviour. They are violent and distressing for everyone, and if I could make anything better about James, this would be it.

I can remember the real humdingers. These really stick in my mind.I'll tell you this one becuase if you ever see one, maybe this story will stick in your mind, and you will know how to help. One day, during school holidays when James was 6, I had taken them into the mall. I only needed bread and milk, it should have been a quick in and out job. Looking back, I kinda knew that he had had enough, I just thought I could push my luck enough to run in and be out in a jiffy.

Firstly, there was a queue. James HATES queues. Then Ben banged his head and screamed. Loudly. Right next to James. Then all hell broke loose. He ran off pushing over a stand full of cold remedy stuff. It fell over and everything fell off it. He ran off down the aisle pulling everything off the shelves; all the time screaming in great distress. Ben was still screaming, I didn't know whether to stay and look after Ben or run after James. I lifted Ben up and went after James.God only knows how I did it, but I grabbed James with my free arm and managed to put James into the shopping trolley. He was spitting, kicking, hitting and screaming so, so loudly.  I actually drew a crowd. People stopped and looked at us whispering behind their hands. Not ONE person offered to help, said a kind word, or anything. This still breaks my heart and can bring tears to my eyes as I recall it. They must have thought I was a terrible parent, completely unable to control my kids, It's a wonder nobody called social flippin' services. Or the police. Actually, that would have helped!

So, we get out of the shop, James still in full swing, Ben crying, and me trying, desperately to hold it together. We get to the car park, and James goes into flight/fight mode and bolts. Into the path of an oncoming car that thankfully was cruising for a park. I pick him up, still in full swing and get him into the car using brute force. I just need to get home. I get into the car and James is laying into Ben. I get James out of the car again and realise that I need to call someone. My phone is dead!! Of all times!! Somehow we get home. How I didn't crash is beyond me. James was fine once he was home. Put him in front of the computer and I literally collapse into tears. I called Stephan to come home from work, and I called his therapists.

Now, that one was a pretty bad one, made worse by the fact that is was in public. If you had been there, what would you have done? Let me tell you. Ask me what you can do to help. I will tell you that my son is in Autistic meltdown. I will ask you to help me with Ben and make sure he is safe. I will ask you to please tell the crowd of onlookers that he is in Autistic meltdown and to please give us some space.

This was hard to write. I actually havn't recalled this in a while, and I still remember it like it was yesterday. I have been called into his school because he has trashed the classroom. Literally trashed it, it looked like a bloody tornado had ripped through it. Imagine how you would feel if the school principal had to call you at home to tell you that your child has trashed the classroom and they can't control him. I calmed him down, I got him home. His school were amazing. Still are, but that is another blog.

I know this is hard hitting stuff, and I promise that not all  my blogs wil be so depressing! This is really the dark side of Autism for us, and to understand my family, you have to hear about the meltdowns. I used a very traumatic meltdown to demonstrate this to you, but this is why outings and things that we do all the time, everyday, we do to prevent meltdowns. I hate them with all my heart, I hate them, but I love my boy, and they are part of him, and he is part of our family.          


Wednesday, 16 January 2013

A slice of life from the inside.

I started this blog a while ago, but got so bogged down that I gave up. So many people have suggested I start one, so I'm giving it another go. I often hear myself saying that people have no idea what our life is like compared to "normal" families, and how hard it can be sometimes. I spent so much time trying to be "normal". Useless energy I have found, and it has taken me literally years to come to terms with that. I know now that our life is OUR reality, but I feel I can share that. I kinda hope that giving people insight into what it is like to live with Autism may help you to not judge us, or our boys, and the hundreds of others like us. If you stop and think that maybe that kid that appears to be having an enourmous tantrum, and why isn't that Mum disciplining him and that he needs a good smack on the bum? If my blog makes you pause to think that maybe he is Autistic, and that tantrum is really a meltdown that has happened because he is completely overwhelmed by the crowds, the noise, the lack of control in an unfamiliar environment and that his Mum is just trying to help him through it and avoid the disapproving stares and judgement, that she can feel, even if you don't actually say it; then my blog has done it's job. My boys are not naughty. They are autistic. Our parenting style differs greatly from yours, because the parenting style that you have, we probably tried and failed.The commonality that we all have though, is that we love our boys to the ends of the earth. In that, we are the same. Like you, we are trying to raise out kids in the hope that one day we will leave this world with happy, functioning adults. Whatever your aims of parenting are, I can bet we are the same in that.  We will do anything to help our boys and make them happy in a world that doesn't understand them. Let me help you understand. Welcome to my blog. Get ready to learn. Here is a slice  of my life from the inside.    

I will give a bit of history into my boys. James is 7, Ben is 6. Stephan and I have been married for 9 years
and we live in Auckland, New Zealand. I am English, I came out here in 1999. Stephan is German in origin, but he has been here since he was 11.

James was diagnosed with Autism at the age of 3, Ben at the age of 4.  I tell James that when God made little baby boys, the angels gave him to us. I tell him that he was a particularly bright, and lively spark, more sparkly and shinier then all the other sparks. The angels thought that he needed VERY good parents, so they gave him to us. I tell Ben that the angels thought that he was especially bright, like a ray of sunshine, and so that is why he is my little ray of sunshine.   

James has Autism Spectrum Disorder (ASD) with aspects of ADHD, high, disabling anxiety, and Sensory Processing Disorder. He is a sensory seeker, not that that will mean much to most people, but it defines James. He was diagnosed at 3.

Ben has ASD, and Sensory Processing Disorder. He was diagnosed at the age of 4. He is less obvious then his big brother. Both my boys are high functioning and verbal (most of the time anyway!)

I could go into the definitions of his diagnosis, but it would be boring, and you will learn about how this affects him through my blog posts. My blog is to tell you about the reality of living with Autism. James and Ben will tell their stories, through me. James, Ben and myself and Stephan will tell our stories, some funny, some sad, and whole lot more besides. You see, living with Autism is a roller coaster of a ride; unpredictable, scary, hold your breath and go for it. But you'd do it again in an instant.Sometimes I want to scream, sometimes I want to cry, and sometime my boys and I, and my husband, Stephan, can appreciate the most amazing highs.

I am in the middle of the loooooong summer holidays. Any parent of a child with ASD will tell you what a challenging time it is. Two weeks, hard, but the end is always in sight. 6???? God help me, I am losing the will to live. I am in week 4.  I am not going to blurb on about the professional lingo, if you want that, google it.  Without the structure and routine of school and term time, they have to invent their own. I start out with the best intentions of making sure they know what is going to happen and when with visual diagrams and pictures of things that I have planned for them to do. Falls by the wayside usually, as they are pretty good at doing their own. The groundhog day routine is sucking the life out of me, but doing the opposite for them. They love it, right down to the colour coordination of their lollies. Getting wet on the trampoline with the hosepipe,which they would do every half an hour if I let them. Had to put boundaries in place for that. Lego. My living room is being taken over by Lego. There is something very soothing for them as they sit in the "w" position (proprioceptive grounding for those in the know), methodically building their Lego, orally regulating which is occasionally in sync, but mostly sounds like a cacophony of tuneless tunes with a kind of beat thrown in. Time for ice blocks means that is is after lunch, we don't have them before lunch. You see, they have no concept of time. Well, neither do most children I hear you say! Mine really don't. One hour could mean 10 for them, and their routines are what dictate time. 

I work hard at not making them agoraphobic. They don't like people, or crowds. At all. Really, it can cause them great anxiety. Especially if it is an unfamiliar place. They can tolerate shopping malls for short periods of time because the mall is a predictable routine for us, and I still have to bribe them with a toy. Last holidays, I wanted to take them to a historical village. Fun but educational thing, like stepping back time. It took me TWO HOURS of meltdown to get him into the car. Once there, I had to carry him around with him holding on for dear life.
The thing is that, in summer school hols, everywhere is busy. Even the familiar, predictable outings become a battle of massive proportion like a military manoeuvre.

Swimming pool today. James has become fearful of the womens change room; he doesn't want anyone, well women to be precise, to see him naked. We went at the weekend with Stephan, and he was terrified. Thankfully, Stephan was there to take him to the mens change room, otherwise he would have gone into full blown Autistic meltdown. (I'll talk about those later). So today, Stephan is at work, there is only me, and there is only one family change room.  So I talk to him, tell him that if he wants to swim, he will have to come into the ladies. He really wanted to swim, so off we go. It was busy. Loud. They are noise sensitive. They spend most of their time underwater. When it was time to go, I talk to James again and remind him about the change room, and promised him an ice-block if he was brave. Lo and behold, how pleased am I that he dutifully follows me in!!!! "Where's Ben?" he says. Not here. Back out we go and Ben is cowering in the corner. For the love of God!!! To think that all I used to be worried about when I went to the pool is how I looked in a bathing suit! 

So, we continue to find things to do. We live in the City of Sails, we are surrounded by beaches. James decided that he doesn't like beaches anymore because he is scared of dogs and of cutting his toe on the rocks (Ben cut his toe a few months ago, lots of blood, hence the phobia). I bought him some aqua shoes but he still won't go. Funny because last school hols, he wouldn't do anything BUT go to the beach. I am thinking that  by now you may be getting a hint the flavour (OK, so I just watched British Bake off) of the obsessional interest. Plants v's Zombies. It's a computer game. To be fair it is actually quite addictive, I've played a bit myself in a vain but desperate attempt to beat Stephan, to no avail, he is really scarily good at it..........But James plays it ALL THE TIME. The accompanying music is driving me to utter distraction.They make play dough Plants v's zombies, Lego, he WOULD NOT STOP asking me for a plush toy character of a plant from the game which I ordered to literally save my sanity. Autistic obsessions. He has them all the time. Last year it was insects. He was going through a really bad patch in the early part of last year, and there were days that he he literally couldn't get into his special needs classroom. Just couldn't tolerate it. His teacher aide would spend the day hunting for insects with him around the school. Or taking him to the library to research insects. His written (I say that loosly, he hates writing, at the time, he was doing most of his ccomprehension on the computer) work was about insects. Oh, the slug one was the worst! His teacher banned him from bringing them into the classroom, and proceeded to find that he had hidden them everywhere! I found him putting one in his bed "because the slug was tired"!! Seriously!! God, I was glad when that one ended. His level of dependency on obsessional objects depends on where his anxiety is at, but it's always there. Like I said, plants v's zombies at the moment.

Time for bed. I feel like I am moving onto the hard part of James, and I'm too tired to write about it now, and is deserving of a whole blog to itself.

WTF will I do tomorrow? Might take a trip into Stephans work. They miss their Dad when he is at work, he plays with them tirelessly with cool stuff and is Master Of Lego Building. He is showing them the Star Wars movies, and talks them through it so that they understand. I am a poor second best, I hate Star Wars, and I am terrible at Lego.  He really has endless patience with them, and they worship their Dad, especially James. Ben is a Mummy's Boy, but James belongs to his Dad. So, on that note, I need beauty sleep. Hope you enjoy reading my blog xxxxxxxx