I Saw You (Happy Father’s Day)

I saw you light up with pride when they said “it’s a boy”.
I saw you struggling to comfort him when his only comfort was me.
I saw you fighting to calm your temper when he screamed and hit out at the world, overwhelmed and confused.
I saw you light up, basking in his brilliance and his sense of humour.
I saw you powerless and emasculated when he defied you again and again.
I saw you struggling to protect us from the pain of it all, too proud to ask for help.

I saw you recoil with pain when they first spoke the word “autism”.
Together-alone we spiralled chaotically through the stages of grief; denial, depression, anger, bargaining, acceptance.
Numbness was ever present.
When the grief hit us both at once we clung to one another.
Other times we clashed; one of us in denial the other in anger, one of us depressed, the other grasping at acceptance.
Exhausted and shamed we built up walls.
Each trying to reach the other but speaking different languages, hearing only blame and criticism.
I saw you overwhelmed and powerless, looking for an escape.
I saw you quietly decide to stay.
I saw you exhausted and pushed to your limits.
I saw you get up the next morning and try again and again, and again.

I see you learning to understand our little stranger and to know who he really is.
I see you advocating for him at school and with our families.
I see your hurt when he is left out of a game or treated unfairly by another parent.
I see you share his joy of “Minecraft” and “Stampy Longnose”.
I see you understanding him in ways that I do not.
I hear you explaining the world to him in ways that I cannot.
I see unconditional love binding you together and strengthening you both.

I see you.
We love you. Thank for everything that you do.
Happy Father’s Day.
xxx

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What Colour are Your Lenses?

I’m facing a steep learning curve at the moment, relearning how to parent a neurotypical child. Well, I assume he is neurotypical. He has a few quirks (don’t we all?) He hates hand driers and having his teeth brushed. He throws an almighty tantrum (he’s two, that’s his modus operandum). Overall though he copes just fine with whatever life throws at him so I reckon he’s pretty NT. Anyway, I digress, my point is this; My first child (The Stranger) has a form of autism called pathological demand avoidance. In practical terms this means that the demands of everyday life can cause him profound anxiety, stimulating a ‘fight or flight’ reaction. Basically stuff that you or I cope with easily like say, having to queue for an ice cream can result in an extreme meltdown reaction (way over and above the ‘normal’ impatience
and frustration). He also struggles to cope with change or when he finds that reality doesn’t match his expectations, again with very extreme reactions.

Anyway, as a first time parent he was my guide, my teacher. For years we had no idea that he was particularly different from other children yet my experiences with him were shaping my beliefs about children and parenting which in turn colours how I perceive the world around me and the judgements I make. He added colour to the lenses with which I see not just him and myself but all children and all parents. He was a volatile toddler and could explode in an instant over seemingly innocuous things eg a biscuit breaking or a sandwich being cut into the wrong shape. I learnt to tread carefully and gently to avoid setting him off, to micromanage his day and keep things predictable and not too overwhelming. I learnt to perceive children as both volatile and fragile at the same time.

He taught me to believe that children are inherently good and want to do well. He is very innocent in many ways, unskilled in subtle manipulation and very open. When he struggled there was always a reason and it became my job to help him find a solution. Telling him what do do or not do met with resistance and anxiety so I learned to limit direct demands. He taught me new ways to be a parent.

My youngest boy is different in so many ways. I find myself constantly surprised by his ability to cope and to take things in his stride. Don’t get me wrong. Yesterday he had the mother of all tantrums and lay down across a busy pedestrian bridge, kicking and screaming because he wanted to walk by himself without reins. Thankfully it was brief, after the initial fury abated he listened to me and relaxed with a hug. If only ASD related meltdowns could be calmed so easily. At the same age The Stranger’s meltdowns would last for ages and at times he was beside himself and inconsolable.

The Stranger also has sensory issues and as a result a very limited diet of ‘safe foods’. It is not simply a matter of “he will eat if he is hungry” or “he will eat if you keep offering it”. He has aversions to certain textures and smells, the mere sight of fruit can make him vomit. He taught me to relax my expectations around food and mealtimes, to pick my battles and to play the long game. Instead of 5 Veggies a day I celebrate if we manage 2 a day (the same 2) and I’ll settle for 1 or even none on a bad day. The more I relaxed about food the better his diet became. My youngest is very different, if I keep serving a food he initially rejects he often comes to like it after a few tastes. If he sees me eat a new food it reassures him that it is safe. This is a very new experience for me. The Stranger does not instinctively look to others for reassurance, somehow he just doesn’t have that ability. I think this is one of the big reasons why ASD is often confused with “attachment disorder”. Parent- child pairs can seem to an observer to lack that instinctual bond. Anyway, I digress again.

I often find myself pondering that if my neurotypical toddler had been my first child then he would have shaped my beliefs and as a result my opinions and judgments about parenting so differently. He might have taught me that good parenting begets good behaviour, that tantrums will end quickest if calmly ignored and that picky eating is easily cured by calmly continuing to serve rejected foods week after week. I imagine I might have seen a picky eater at a friends house eating plain pasta and cucumber or an overwhelmed child kicking and screaming and shaken my head thinking ‘I wouldn’t allow that under my roof’.

Our core beliefs are shaped by other factors too; the media, our own childhood experiences, shared experiences with friends and family for example. If we had a very strict upbringing ourselves it can be particularly hard to change that pattern and be more flexible with our own children even if we know that it is what they need for whatever reason. Several of my own family have told me that they just wouldn’t have believed that pathological demand avoidance is real thing had they not witnessed us first hand, struggling to cope with The Stranger. Media is also a big one, the tone of what we watch or read can really shape our beliefs and thoughts. Today Twitter and Facebook are an increasingly powerful source of information and opinion. I suppose it could be compared to the old ‘war time propaganda machine’ and ‘rumour mill’ which had such a powerful effect on the beliefs (and as a result morale) of the people.

‘Children’s’ behaviour’ is currently a popular topic for television programmes in the UK for example; “Super-nanny” and “My Violent Child”. Generally they follow this format;
1) Show clips of child exhibiting shocking behaviour, usually running rings around a weak and ineffective parent.
2) Bring in “parenting expert” or “super teacher” type to introduce firm, consistent discipline. At this stage the parent is generally shamed and freely admits responsibility for the child’s ‘issues’.
3) Demonstrate (short term at least) that the intervention has been a great success. The parents then express gratitude at having been ‘saved’.
4) The cameras go away and everybody lives happily ever after (presumably).

The social media response to these programmes typically reinforces the attitude of blaming the parents and the decline in strict discipline in our society.

When a child presents with a behavioural problem the first thought always seems to be parenting. Well intentioned friends and family often suggest whatever parenting strategies they found most successful. Gossip at the school gates frequently focuses on which child has done or said what and whose fault it is. Judgment is often cast over the child’s home situation, or for parenting which is either not strict enough or responsive enough in the mind of the observer. Often the first response from professionals is to offer (or insist on) a general parenting course. As the parent of a challenging child you have to first prove that your parenting is not to blame then perhaps if you tick the right boxes move on to assessment for a neurodevelopmental disorder or for other forms of professional help. In the case of a child with extra difficulties the use of inappropriate general parenting strategies can add to the stress of a family already struggling and in pain.

Channel four’s “Born a Naughty?” is a breath of fresh air (apart from the name but I suppose it could have been much worse so I’m going to let that go). I realise that plenty of assessing and vetting will have taken place before filming but taking it at face value I love the idea of curious and open minded clinicians meeting a family, taking a full and objective history, ordering appropriate assessments and then carefully considering and reaching a diagnosis BEFORE recommending tailored interventions.

I am excited and grateful to “Born Naughty?” both for raising public awareness of PDA and for taking a different tack from the usual ‘one size fits all’ approach. It is refreshing to see a television programme changing the language we use to describe challenging kids from “temper tantrum” and “manipulative” to “meltdown” and “anxiety”, from “naughty” to “struggling”. I hope this awareness will filter into the general public’s consciousness and that the programme will continue to increase the general publics’ awareness of neurodevelopmental disorders like ASD and PDA. I hope to see a gradual shift in the way the general public perceive challenging behaviour and the families dealing with it. It would be fantastic if more people could change their lenses and see that so many children who show challenging behaviour often have a hidden difficulty and not a flawed character or a dysfunctional family.

Now a days if I see a child acting out or behaving badly my first thought is usually that there is some underlying problem, some factor “beneath the ice berg”. Sometimes I am wrong. Sometimes a perfectly capable, balanced child will choose to behave badly. I do genuinely believe that for the most part kids will do well when they can but I also realise that I am biased. The lenses which I see the world through have been tinted by my experiences and by the life I am living. There is value I think in being aware of my lenses, my inner beliefs and the way they colour my perception of the things I see. There is enormous value in being able to remove those lenses and to view the world around us objectively with curiosity and an open heart.

We Need to Talk About Elspeth

What can I say about a 16 year old girl who took her own life? That she was brilliant? That she loved reading and art? That she desperately longed to fit in socially and to form strong, close friendships? That a diagnosis of Asperger’s syndrome rather than making her life easier, actually caused her to take her own life? That she is yet another victim of the “epidemic of autism”? That her diagnosis was ‘more for her mother’s benefit than for her own?’ Just a few examples of things that have been written about Elspeth and the inquest into her tragic death.

I didn’t know Elspeth Mckendrick or her family but sprinkling a liberal mistrust for journalists (and commentators), reading between the lines and superimposing my own experience as an ‘autism mum’ I think the real issues may have been missed here.

I have experienced first hand how hard it can be to secure a high functioning autism diagnosis for a struggling child. Often it takes several years of waiting followed by testing, more waiting and “reviewing in another 6 months”. Sometimes parents must attend inappropriate parenting courses and demonstrate our ability to use inappropriate discipline methods ‘properly’ before a referral for assessment will be accepted. We must jump through hoops in order to prove that we didn’t cause our children’s challenging behaviour simply through bad parenting.

I have experienced a loss of faith in the NHS/ CAMHS diagnostic process and thankfully been advantaged enough to be able to afford to chose private diagnosis.

I have experienced the total lack of support available to children and their familys following an autism diagnosis. We were offered (and we gladly accepted) a place on the National Autistic Society’s “Early Bird” parenting course. It is a great course and I highly recommend it. However, I was shocked to hear that that was the end of the line. Further support could be accessed by the school as and when it was needed but we, the parents were effectively sent off to get on with things ourselves. There was no support for his lagging emotional regulation skills or violent rages, no social skills groups, no occupational therapy. There was no counselling to support us as a family or to support our child in learning about and coming to terms with his new diagnosis.

So we went on our way. I researched and taught myself everything I could find out about autism. I became my son’s social skills teacher, I learnt ways to help with emotional regulation. My husband and I researched and discussed how and when to explain the diagnosis to our son. It’s still a work in progress. None of it has been easy and we have come close to breaking point many times. Luckily we have good practical support from our parents for childcare and respite because honestly the professional support we have received has been minimal.

We have faced opposition along the way. Family members were concerned that “labelling” our son would cause him more problems than it solved. I suppose they feared that a label would become a self fulfilling prophecy. I also think we each had to pass through a stage of ‘denial’ on the way to acceptance. Ultimately it was our decision to have him assessed and I have no doubts that it was the correct decision for us. The label of ‘ASD’ has allowed us, and my son’s school to look for and understand the causes behind his behaviours rather than just seeing the behaviour at ‘the tip of the iceberg’. The specific label of ‘pathological demand avoidance’ has allowed us, his family and his teachers to really understand his anxieties and challenges and to finally put into place the strategies which will allow him to cope and achieve the best he can.

The psychologist who diagnosed The Stranger with ASD and PDA now works in a tier 4 hospital within CAMHS. That’s the top tier, the end of the line for young people with the most complicated and severe mental health problems. She estimated that around 80% of her caseload are undiagnosed or misdiagnosed ASD cases. Imagine growing up in a world that just doesn’t make sense to you, constantly getting into trouble without meaning to. Your family constantly misunderstand and even scare you, school is a terrifying place where you can seemingly do no right. At best you are a loner and don’t fit it, a target for bullies. To a child with sensory processing differences a school assembly or a simple trip to the shop can be a terrifying ordeal. No wonder these kids are at high risk of co-morbid conditions such as depression or OCD.

For every Elspeth who found herself or himself struggling to understand and accept a given diagnosis I suspect there are thousands without an appropriate diagnosis, struggling to understand their feelings of isolation and depression, struggling to understand their place in the world around them.

One of the diagnostic features of autism is rigid, black and white thinking. A person with autism might have some difficulty identifying with the ‘label’ or ‘diagnosis’ they are given. They might need professional support to accept and understand what their ‘label’ means and to come to terms with it. I strongly believe there should be more support available to young people receiving a diagnosis, and to their families.

This story touched a nerve for me, it is so very close to home. I am thankful that our son received a very specific diagnosis of ASD and PDA (and the understanding they bring) at such a young age. I am thankful that he can grow up aware of his diagnosis rather than it be a shock and cause him to question his identity later on. I am deeply saddened for Elspeth’s family and for all those currently suffering due to lack of mental health support. I really hope Elspeth’s story will bring greater awareness and acceptance. We need to stop worrying about “autism epidemics” and “over diagnosis”. We need to start supporting young people and their families properly because the alternative is more tragedies waiting to happen.

Zombie Pigmummy to The Rescue

The Stranger is now DEEPLY entrenched in a Minecraft obsession. He eats, sleeps and breathes Minecraft and is becoming more absorbed in it every day.

Pathological Demand Avoidance Syndrome is characterised by a deep need for control over one’s life and environment. Severe anxiety can result when that control is taken away. PDA management strategies basically focus on reducing everyday demands and handing over as much control as possible (within safe and acceptable boundaries). Following this philosophy has made our lives (and contrary to popular expectation) The Stranger’s behaviour improve noticeably.

What does it mean “to hand over control to a child” in practical terms? In The Stranger Household it means he can choose “a ration” each day. He controls what it is and when he has it so if it’s chocolate for breakfast or an ice cream before his lunch that’s cool with us but he knows he only gets one. Handing over this control of “treats” has really reduced his anxiety about them. Before he was constantly obsessing over chocolate and sweets and what he could have when, constantly asking for them. He also chooses what activities he does, in what order, when he reads (and which books). On a Sunday he chooses whether to get dressed or have a “PJ day”. It works for us.

Personally I find screen time and diet are the hardest things for me to give up control over. I think this is because I know there is good evidence that too much screen time and poor diet can influence our behaviour in negative ways. What if the effort we are putting into helping The Stranger, providing opportunities for his brain to rewire in positive ways could be undone by the effects of too much screen time? Would his life be easier if he would just eat a sodding vegetable?
I suppose diet and screen time are also triggers for me, a bar to measure how far I have fallen from my idea of the parent I would be.

So, this current all encompassing obsession with Minecraft is giving me cause for concern. The Stranger is becoming more and more submerged in the world of Minecraft, more distant and hard to reach. I decided to raise the issue with The Stranger “Explosive Child” plan B style. We’ve used this strategy lots of times over the last year or so but he hadn’t really engaged with it so far so any ideas and suggestions had been mine. I love the idea though and fresh from The PDA Society Parent’s training I was enthusiastic. I told him I had noticed he was having difficulty listening and talking to us and that he didn’t seem to want to do anything except play Minecraft. He said that no, he didn’t want to do anything else because I loves Minecraft so much. I empathised and checked I understood his concerns. So far so good. Then I laid my concerns on the table, I told him I was worried that too much screen time could harm his brain and that he would struggle more and more to communicate with us. I asked if he had any ideas to help us both get what we wanted and then I waited. After a long pause he said “I know Mummy, we can do Lego Minecraft, or maybe play a Minecraft story on the trampoline.”

That is how the following conversation originated, punctuated by enthusiastic bouncing:

The Stranger; “Mummy, I’m the Daddy Zombie Pigman, you’re the Mummy Zombie Pigman and we’re having a ‘special cuddle’ to make baby Zombie Pigmen. You knit a nest so they can hatch out”
Me; “Awkward!” ((snort, snigger, makes attempt at simultaneous Zombie Pigmummy birthing and knitting type noises……….))

Never a dull day here, never a dull day!

The Festive Roller Coaster

This “PDA parent” life is a roller coaster and sometimes there seem to be more lows then highs.

This week for example The Stranger’s school performed their nativity play. The Stranger was too scared (I’m not sure of what, possibly of making a mistake) to even join in with the rehearsals so his teachers and I decided together that we should give it a miss this year. Without a doubt it was a good decision but I still felt pangs of sadness for him and for myself. I felt jealousy towards the other mums and I suppose disappointment that I seem to be further and further isolated from them.

Christmas can be such a tough time for kids with ASD (and their families). The changes to routines, sensory overload and the overwhelming excitement and anticipation can be extremely unsettling. Something as simple as a school Christmas Fair can be a one way ticket to meltdown city. We have learned to limit our exposure to these busy, chaotic Christmas events and to plan and prepare carefully when we do attend.

Today I decided (nervously) to take The Stranger to his school’s Christmas Fair. We spent a few hours doing sensory activities (plenty of bouncing, Lego and play dough). We chatted through a few things first- it will be busy and noisy, the school will look similar but different, the rules will be different, some stalls are competitions where you might win a prize, others are like shops and you buy something. Last year’s tombola disappointment meltdown fiasco was still very much on my mind 😳.

I cannot tell you how well he coped and how proud I am of my little stranger tonight. He coped with “not winning” beautifully- even the dreaded tombola (and thankfully I found the “prize every time” stalls at exactly the right moment). 7 friends came over to say “Hi”, all of them enthusiastic and clearly delighted to see him. 7!!!!!!! I guess they aren’t so scared of him anymore. He introduced me to his new best friend and I am delighted (and slightly relieved) to report that both he and his mum seem really lovely. He does have a bit of a history of gravitating towards the least accepting families. Huge phew!

At times he obviously struggled with the noise and the crowds. He was very hyperactive and at times threw himself around and on the floor, often retreating into his own world but we didn’t lose communication completely. I was able to keep drawing him back to me. He tried his absolute best today to stay calm and in control and I am so thrilled for him.

We saw his teacher and I told her how well he was coping and she was delighted and emotional too. She told me that he is really making friends and joining in so much better now.

He is so clearly loved by his teachers and by his classmates and I am so very proud and happy to see that. Prouder than a million trillion zillion Nativity plays all rolled into one, so there 😄😄😄!

A Strange Encounter

This morning Strange Toddler and I popped to Waitrose (how terribly middle class of us 😉) to pick up supplies for The Stranger’s Birthday party.

We were served by a very sweet young man who I noticed avoided my eye contact. Then I noticed his conversation was awkward and although extremely polite it felt sort of clumsy. He was clearly working very hard to make small talk with me and relying on “scripts” and learned social skills rather than natural ones. While scanning my shopping he admired my choice of “garlic dough balls” and remarked that “pizza always goes down well”. He also remarked on the foggy weather but then went off on a bit of a long and winding tangent about fog and dangerous driving conditions.

He asked me if I had plans for tonight so I told him that we are having a birthday party for my son. He said “that’s nice, to have a celebration” but his body language and tone of voice suggested total disinterest or even that a party might in fact be his personal idea of hell. I told him that my son has autism so the party will be small and will involve Lego, pizza and birthday cake.

He looked directly at me, grinned and said enthusiastically “Lego is so great. I love playing Lego.” He then told me that he and his best friend build Lego cities together, copies of actual landscapes. They spend 3-4 days on each one and download videos of the creating process on U-Tube. He told me they aren’t always “exactly accurate” (I’m guessing he and I might have slightly different standards for judging a Lego replica of an actual city landscape). I’m guessing I might actually be blown away by the attention to detail of his Lego work (and I admit I will be hunting on UTube later on to see what I can find).

By now I had packed my shopping and paid and a queue of foot tapping and head shaking shoppers was building so I politely excused myself so as not to get him into trouble.

I won’t forget that young man and the way he blossomed before my eyes when we talked Lego. I will remember the effort and determination he used to apply himself to a retail job which must be a particularly tough fit for a young with his set of strengths and weaknesses. I hope it will be a positive experience for him. It’s sort of like if I took a job as a computer programmer and had to learn the code (and get over my aversion to technology) on the job.

I also have to raise my glass to Waitrose for giving him the opportunity and for giving me the chance to meet him today. I hope he will stick around!

A shimmer of light

Every so often I get a clear glimpse inside The Stranger’s brilliant, confused mind. It’s as if the fog of hyperactivity and hyper-distraction clears and he is suddenly self aware, present and connected with us.

Yesterday The Stranger was struggling with some big transitions. Mr S had been away with work and I had taken the boys to my parent’s house for the weekend. We got back at lunch time so Mr S and I took the boys out for a walk. The Stranger could not seem to leave Strange Toddler alone. He kept poking, hitting and generally bothering him. We are battling with this problem daily at the moment and finding it frustrating and infuriating (not to mention how guilty and sad we feel for The Toddler who incidentally is tough as a tank).

We try to stay calm and to help The Stranger see how his actions make Strange Toddler feel and how he would feel if he was the target. We also give him a script to follow (to check if Strange Toddler is ok and to apologise). We explain that an apology is a way of showing that you care and that without it (and especially if he laughs and carries on playing merrily) people will assume he doesn’t care. Anyhoo, it is a work in progress and progress is frustratingly slow.

At one point he pulled out a clump of Strange Toddler’s hair. I was furious and shouted. He looked straight at me and said; “I didn’t laugh.” Then to himself; “no tummy! Stop hurting! ….(crying). My tummy wants me to laugh”. He was extremely upset and obviously in physical pain with the effort of not laughing or perhaps from the compulsion to laugh? I don’t know which (or maybe something else entirely?)

It was a huge insight for Mr as and I. We could see so clearly that in that moment despite his advanced vocabulary The Stranger could not understand or process his own emotions or ours. It was clear to me that he was fighting against his body trying desperately to make an appropriate and socially acceptable response. It was hard to see but it was a reminder we badly needed of exactly how hard the challenges that The Stranger faces are and that he does well when he can do well. It also gives me hope that our patience and hard work is helping him to understand the mysterious social rules which confound him, that his brain is slowly rewiring and (please God) he is developing self awareness and emotional control.

I am finding this phase challenging. It feels like I am explaining the same things hundreds of times every day with little to show for it. Yesterday I saw a glimpse of progress and I saw just how hard that young man is trying to get it right. If there is one thing The Stranger has taught me it’s that if he wants to achieve something then he bloody well will!

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