Wednesday, February 20, 2019
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Why I keep talking about Isaac’s autism

Matt Davis 0 Comments , , , , ,

Will I feel comfortable with Isaac being aware of this blog as and when he acquires the ability to?


That I’m actually penning this pontification suggests futility writ large. It’s too late for any lamentations on my part. Fortunately I’m far from beating myself up for publicly tussling with his autism and its many manifestations. For his, and our, sake, sensitivities that shouldn’t be shared are silenced by a thorough filtering process. My instinct for appropriateness remains impact.

The question (nuanced rather than in unreconstructed form) has therefore acted as a gentle leaver on the moral compass if you like. Not that it was needed at all in his early days. Chronicling them demanded a frank, exposing honesty such was our raggedness – with raging against society’s stares going hand in hand with amplifying autism’s awareness a matter of Isaac’s human rights. Intensity informed everything and I felt compelled to communicate all we learned. I wouldn’t change a smidgen.


Indeed, Isaac’s physical and mental being is full to the brim of ever changing behaviours and abilities. That will continue to be themes of his autism and dyspraxia throughout his life. His impairments, sensory challenges, obsessions and anxieties; his charm, magnetism and magical memory; the logic and literal, the deliberate language delivery and fabulous turns of phrase. To understand his wiring is to (metaphorically) untangle it. Neurological, social and physical truths I’ll forever feel the need to talk about, however tough and testing.

As he approaches nine however, the question devolves from what I singularly (as a father) say about him to something more pluralistic. Maybe not a question, more a constant consideration that whatever I say needs a degree of respect and parity with his own opinions, profile and personality. How, if at all, will he feel, be aware of, love, hate, tolerate, tame, embrace, enforce, his autism. It’s his journey, my part must, as much as possible, be curated by – at least be in conjunction with – him.


The trigger for treading this, if not new, then perhaps more tentative, path was a peculiar phrase Isaac brought home from school recently. Delivered in a learnt silly voice, with scripted accompanying laugh, he announced (over and over):

“Willy Wonka’s got autism.”


Bizarre sayings besiege Isaac (a modicum of meaning is barely called for; there’s a compulsion and repetition that satisfies an urge). Hearing him say one with (the word) autism in it gave it uncommon clout; the decibels dealt quite a blow. Engaging him in what he thought autism meant led to a dead-end however. Conversations often call for Isaac’s control; the to and fro-ing of fluent dialogue disorientate him – especially when it’s all a little abstract and unattainable. With no natural start or finish, the flow of chat must seem like a whirlpool. This would be one of those occasions where he won’t dip his toe. Effortless for me, endeavour for him.

Such is our real time – forever on and forever fruitful – relationship with school, they are always alert to little aberrations like this.  Isaac probably didn’t have a knowledge of autism, some boys in his class may have. There was certainly no Charlie and the Chocolate Factory revelatory autism story though.  A semblance of self-awareness was seeping into him. A healthy, in hand, observable occurrence that always happened to boys at Isaac’s school.


Isaac’s school. If, as from his bewildered, tiny face seconds after birth, through the distress, social challenges, seeking for patterns, rigidity and more, it can sometimes feel like Isaac is the boy that fell to earth, then his school is the gift from heaven. They’ve assiduously assembled an apparatus around him that’s robust, inspired and ingenious. Cementing their second to none autism knowledge is a pastoral care, appreciation of the condition’s mystery, as well as a dose of resolve and reality.

So much so that on the occasions I pick him up, I find myself in a jubilant state – flushed with the endorphins of expanded expectations; his jolly, sociable, developing self being clear to see. In fact the narrative right now is Isaac is nowhere near his glass ceiling and deserving of lofty ambitions.


And it is in the context of Isaac’s school that I return defiant to the question of my confidence in Isaac being aware of my public utterances about him and indeed openly discussing autism full stop. It appears part of the school’s wider strategy to confront the comfort zone of autism without compromising it. That, whilst appearing paradoxical, to push him is to protect him.

Seemingly the standard bearers of autism’s place in the world, the school’s stance offers me a tonal road map. As I say, I don’t believe I’ve strolled off it too much these last few years. It’s just that for now, in this moment, everything I say feels like it deserved to be through the prism of potential.

“I love trains. They make me happy. Do men drive trains or are there machines inside that do it? Do the engineers build the track? I want to be the engineer. Knock, knock, who’s there? Morden. Morden who? Modern via Bank”.

Isaac is often in possession of a one rail-track mind. To stem it is to leave him ferociously frustrated, unfairly so. Equally, as championed by school, to dwell on the obsessions, means they fester, he gets entrapped in them.



He’s taken to – “as a way to relax after school, daddy, I need to write about transport” – typing the entire tube map completely from memory; effortlessly, at break neck speed. All the stops, their intersections listed, in perfect order; of all the lines; north, south, east and westbound. It’s a preposterous skill really. Mindboggling in its depth and dimensions. His photographic memory transposing the visual into perfect verbal form.


Cognisant of his obsessive need to create such pieces of unconventional prose, I don’t compliment him too much, despite an inability for my pride in his talents to not reach preening levels. Besides, he desires no congratulations and would deflect then to the point of disobedience. “No, no, it’s not clever. It’s transport, I want to put the piece of printed paper I’ve typed the information on in my room, so no-one can touch it,” he’ll hurl with typical histrionics.

So how to harness this passion that can be on the precipice of pointlessness?



In this case, success has been achieved by introducing some social skills. His octogenarian grandfather, Papa Paul, is an enthusiastic, kindly man, whose interests and generosity are varied. One of which, trains of all shapes and sizes and vintage, is something I, in a previous less informed, less responsible life, gently ribbed him about. Now I strongly reinforce it, aware as I am its vital purpose as a social tool.


Isaac and Papa Paul watch train DVDs quizzing each other on stations, chewing the cud over stable sidings, musing signal systems. It’s liberated Isaac from a tight school pick up schedule, Papa Paul collecting him a day a week now with the promise of train talk. “I want to be like Papa Paul,” he’ll say with vivifying sincerity and honesty.

This marshalling of an obsession into something positive and social, is one of many small but significant steps Isaac is making. Repetition is different from routine. He’ll always thrive from and need routine. So a regular collection from school incentivised with train stimulation is a wholly positive development.


Social learning can be laborious and counterintuitive for Isaac. But his place in the world depends on reaching a certain level. Being importunate with social learning is therefore of the utmost importance. Whilst noting the differences of course:

Reward of friendship is wayward with Isaac – the innate skills of reading body language are invisible, regulating himself from cavorting, physical play is a fierce challenge, reciprocation is not part of his natural make-up. Perhaps all this goes hand in hand with the esoteric concept of social currency; something so yearned for in typical children, appearing of limited value to his self-confidence. Yet we do have some foundations in place that could start to paint the broad brushstrokes of potential. Music, he loves; cataloguing and remembering in the main. Any playlist on popular radio he knows in full, “this song we’ve heard already, sometimes you hear things more than once,” I hear a lot on a long journey, DJs’ propensities to play songs over and over, a lack of imagination irritating Isaac slightly. His knowledge, I know, could stand him in prime social pecking order, in time, “this is Hair by Little Mix featuring Sean Paul – I’ve seen it on music television and am listening now to Capital Radio Extra.”


Just being a minor part of the conversation about autism – with Isaac implicit naturally – feels current. In a world where adults with autism are becoming advocates, employers are being encouraged and the Lancet talks of neurodiversity, the public consciousness is rightly being prized open by a previously marginalised autism world. Equally, awareness remains too low, rights are abused, integration can be pitiful, appropriate education denied. A degree of postcode lottery and council inconsistencies mean Isaac has the fortune of a deserved education. It’s devastating to think of the swathes of children with autism who sit inappropriately in a mainstream, unfocused world. For that alone, speaking openly, loudly, disruptively, about autism and Isaac feels crucial.


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Reconnect Testimony: Meghan’s Story

alternamom 0 Comments ,

Have you ever had that moment when you realized that you have been holding your breath…and you finally take that breath but you feel like you can’t really trust yourself to remember to breathe, which of course is an involuntary function, but you still just can’t trust it? So, you obsess over every inhale and exhale? Well, that is our story. Meghan’s story.
In the summer of 2001 we welcomed our second child Caden into our lives. His big sister Madelyn was over the moon excited to meet him and so were we. Our family seemed complete. A little girl and a little boy just over a year apart. Caden was just six weeks old when I began feeling overtired and sluggish. Of course, I am the mother of a young family and that’s what happens. When it didn’t go away I decided to go to the doctor for a check up and routine blood work thinking that maybe my iron levels were low. Later that day I received a call from the lab congratulating me, I was pregnant ~ Again!
Not only were we surprised and in shock, but so was my body. It didn’t seem quite ready to be pregnant again. While my husband and I were trying to wrap our heads around this, I was dragging through my days and I have to say that I had very few good days with this pregnancy. At almost 26 weeks my water broke, we were terrified and 50 miles away from my doctor and hospital. We made it to the hospital on that Saturday afternoon and they were able to hold off her delivery until Monday. After nearly three days, she couldn’t wait any longer and at 1:35 pm on February 11, 2002 we met our baby, Meghan Gabrielle. She was born 1 pound 15 ounces but she was very fragile as the cord had been wrapped around her neck four times and with minimal amniotic fluid to cushion the force of the contractions she was in trouble. By the time she made it to the NICU she was under 1 pound.
For the next two and a half months we held our breath.
With all of the complications that she had due to her prematurity, miraculously, she had no signs of permanent damage and she seemed to be thriving. The NICU doctor had informed us that developmentally she may be behind by a few months but would eventually catch up and by age two she did. Although she was and is still small for her age she continues to prove to us how strong she is and there isn’t anything that she can’t do if she puts her mind to it. We always tell her that she may be mini but she’s mighty. This mindset proves to be important for her ability to face the multitude of adversity that lay ahead for her.
The specialist at the hospital also had spoken to us about the possibilities of her showing signs of ADD, ADHD, Cerebral Palsy, Learning Disabilities, and Mental or Emotional Disorders.
She was almost three and she was perfect. No worries, we had beaten the odds.
Exhale.
Then she turned four and we enrolled her in preschool. Every mommy knows the anxiety that we experience sending our babies off without us and we know that it can be equally as hard on our children. At first we chalked it up to the fact that Meghan had never really been away from me because I own a daycare and I have been blessed to be home with her up until now. The separation anxiety that she seemed to be experiencing was overwhelming to say the least. It was heartbreaking.
Slowly we worked through it but everyday was a struggle and everyday we had to start over. Instead of progressing and working through the anxiety it only seemed to get worse. Any event that she would look forward to such as dressing up for Halloween or going to the zoo or a trip to see her grandparents in Cincinnati would cause a meltdown. When it would come time to get ready it would start. Her clothes seemed to be made of fire and she would scream and pull them off. If a brush touched her hair she would almost convulse and all the while punching and yelling with this guttural, blood curdling, throat burning scream. Who was she? Her face would change and I didn’t recognize her. There was no calming her down or rationalizing. Once the episode started no one had control over when it would stop, not even her. It became so emotionally paralyzing that she would barely leave the house.
Fast forward to age seven. It came to the point that when she was having an episode it was becoming increasingly violent towards me, my husband and especially her older sister. She would break or try to destroy anything in her path and when it was over she was physically exhausted and sometimes she couldn’t remember what had happened. She would become almost giddy afterwards and be almost in a manic, euphoric state. We would talk to her teachers and try to give them some insight on her behavior patterns at home in an effort to gain some perspective, but always their response is that they have never seen that side of her and can’t believe we are speaking about the same child. She is a straight A+ student (not just an A student) and it seems to be effortless for her. Seems to be is the operative phrase here. Because you see, she also suffers from extreme OCD and is an unrelenting perfectionist. Unless you are talking about her brushing her hair or changing her clothes. I know, it makes no sense to me either. We finally decided to take her to see a pediatric psychologist and then a psychiatrist. Of course, their mainstream form of treatment consists of drugs first, a little therapy, a little higher dose of more drugs, a five minute session with the doctor every month and “Let’s just stop this medicine and start her on this new and different drug.” UGH!!
So, for the next two and a half years we held our breath.
When she was ten and the doctor had changed her medication again she was becoming depressed and acting out in ways that we hadn’t seen before. What did we expect? She had been on seven different medications by this point. This time she tried to cut herself. Her daddy grabbed the knife from her and we all collapsed to the floor together and held each other and sobbed for what seemed like forever. I was crying for the daughter that I thought I was losing and I knew that we were not equipped to handle any episodes of this magnitude. The next day we had to admit her to the Children’s Hospital in the psychiatric ward. That was the hardest thing I have ever done as a parent. I was determined to make changes, whatever it took. We ended up changing doctors and he has been a God sent. We changed her medications but with the end goal in mind to get her off of the synthetic drugs and on to natural supplements instead but it is a process.
Meghan is twelve and she is still struggling. She seems so full of anger, like a powder keg waiting for a spark. I have tried to explain her outbursts to friends but it isn’t quite the same as witnessing it, as my friend Carrie would find out. One morning before school Meghan and I were battling as usual because I asked her to brush her hair and I was trying to pull it into a pony tail. She was screaming and hollering obscenities at me and Carrie had come in and heard her. I didn’t know until later how much that had effected my friend. Just weeks before I had attended a special event that Carrie had organized where the keynote speaker was Susan Richardson. I was so touched by her story and I sat with tears in my eyes as she spoke because I knew ~ she gets it. Little did I know how much that event would touch our lives. I had recently been introduced to Young Living Oils by Carrie and was using them at home with my family. I had the chance to meet and speak with Susan and briefly explain my daughter’s issues. It was then that I first heard about the “mommy driveby”. She gave me some valuable information about the oil that worked for her ~ Vetiver. I put it on my list right away and couldn’t wait for it to be back in stock. In the meantime I was using Peace and Calming and Valor and Joy on a regular basis with my family and especially Meghan. (When she would let me.) After Carrie witnessed Meghan’s episode up close and personal she called to ask if she could stop by that evening to talk to me. I can’t even tell you how I felt when she revealed the reason for her visit. She had spoken to Susan and wanted to offer the Reconnect Blend for us to use in the trial. God works in mysterious ways for sure. For as much as I wanted to keep Meghan’s meltdowns behind closed doors, it was because Carrie witnessed it that our guardian angels were revealed.
We began using it right away along with Valor. I won’t lie…sometimes she still refuses to put it on when she is in the height of an outburst but when she applies it regularly, dare I say, it works!
If I wasn’t sure before, I can tell you this. It was the last week of school and my little OCD perfectionist had no less than five big assignments due. I made sure that she applied her oils every morning and after school that week and she got through those projects like a pro. I don’t think I could have done it. The one time that we had a huge, full-blown episode I was completely discouraged and deflated until I realized that she hadn’t applied the oils for the past two days (I had left it up to her to do on her own). That was it. We got back on track and we have been steady ever since. She is completely off all medications and only taking natural supplements and using the oils regularly. Her life, our life, is changing for the better and I feel that Young Living has had a significant impact on that. Now, I’m not saying that things are perfect. She is definitely still a work in progress, but aren’t we all?
But now, we can breathe…
Thank you Young Living ~ Kelly & Meghan
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Kindness is everywhere

Matt Davis 0 Comments , , , , , , , ,

The very things that many people think make the world go round, actually make the world go wrong for anyone associated with autism. Hustle and bustle, chin-wagging, dropping everything to do nothing, spontaneity, chilling, trusting instinct, nous, crackling atmospheres, surprises, adventure. Society is bred and nurtured on wholesome truths like variety is the spice of life. When for so many touched by autism, variety is the spectre of life. A world where the primers of improvisation and intuition make it a world wrought with bafflement and, quite, frankly, danger. Off script, on high alert – us and Isaac.


And that’s just the uncontrollable base climate we inhabit. Before we’ve even considered the bolts of prejudice, cuts and an antagonising system that regularly blow up in our faces. Or indeed the ill winds and choppy waters of Isaac’s future – education, employment, relationships.

Battening down the hatches has its appeal, believe me. Burying our heads in quicksand, getting lost to a limited life of fierce logic, linear living and uniformity. Scripts, structure, rigidity, predictability. Repetition, repetition, over and over.


But doing that is such a disservice. This deference to Isaac’s controlled calendar of specificity; where he calls the shots of what to do, when and with whom from the comfort of his ever decreasing comfort zone of categorising, lists and scheduling. Instead we try ever so tentatively to tread beyond the timetable. As, indeed, does he. One step forward, two back, as I’ve often said. Challenge him with too much change and it all gets too quarrelsome. Pre-empt his shrill tones of rage and remorse with just a thimble full of new stuff and there can be progress some of the time.

And revealed to me in these positive and proactive moments – when brightness seeps in and there’s buoyancy and a bouncy spring in all our steps – is that Isaac’s existence can be one to really revel in. That despite how ill-fitting the world can be for his autism and dyspraxia (from sensory overload to the ubiquity of physical and visual disorder) right now, permeating this 8 year old boy’s climate is an extraordinary kindness. We are discovering microclimates of care and love orchestrated by friends, family, even strangers. At this very particular moment in time.


His slightly professorial persona makes loving people’s eyes stream. Our loquacious little boy disarmingly (unknowingly) charming others with his scripted announcements and super logic – on arrival at our house, people are greeted with “You’re alive! Welcome back. Are you staying for a long, medium or short time? Did you drive or walk?” (And on and on). Saying a hundred words of detail and minutiae when he can say one. Very literal, very long-winded.

Out and about, his turn of phrase, turns heads. Bringing joy more often than not. Who can’t fail to warm to a young boy earnestly commenting that he is “so happy when I’m on a bus; having such a lovely time. Can we watch a little bit of buses and trains please daddy when we leave this bus for the street near the station at Highgate? Highgate has a capital H. Capital letters are for restaurants, people, names and places.”


In public, Isaac has also started to wear ear defenders to manage clatter and chatter. Just witnessing people’s smiles and warm recognition means for those moments a microclimate is robust and a great place to be. For everyone somehow.

Thoughtfulness can be found in the least expected places. Some recent repair work to our house meant a cavalcade of builders disbanding in his space – and disrupting. The noise and mess could easily have accelerated in Isaac’s troubled mind to a torpedoed home landscape. Step in builder Jim and his innate appreciation of autism, and perception of Isaac.


After answering Isaac’s barrage of questions – some very intrusive like, “Who were you on the phone to?” he replied “Neil, he paints walls. You’ll meet him soon.” Not being phased with “does Neil have a mummy and a daddy?” Not flinching at his repeating of questions, sensing how relaxed it made Isaac. Before long Isaac was helping him lay carpet protector down. “It’s like a sport’s obstacle course at my school,” a typically bizarre Isaac-ism inspired by a subtle visual connection no doubt, and Jim agreed wholeheartedly. In those few moments, the groundwork was completed that eased so much of the subsequent house work.

Fanciful maybe, but it even felt he allowed for Isaac’s visual perception and motor skills challenges, showing him where work would happen, bricks moved, tools left, mess cleared. Unifying for him this tapestry of disturbance to his world into a digestible, comprehendible whole.


And recently, where there’s been jeopardy there’s been a real kindness too. The London Transport museum in Isaac’s mechanical but full-of-meaning words is “a wonderful place, my favourite in the world, a short distance from Leicester Square, where I can get books and toys and watch trains and stay for a really, really long time”.

But what if he arrives there and it’s not yet open? A kink to the flow of the punctiliously prepared day exposed already. Like a cumbersome computer ever expanding its ram capacity, Isaac’s ability to store information increases by the day; the flip side being a crash when the storage malfunctions will be ever more dramatic.


Like all crashes, however, if people act quickly, the impact is softened. The staff we tweeted as his day’s solidity slipped from him with this unpredicted barrier of a closed door responded with alacrity. Just as his stricken self was bemoaning with real distress that “this place is rubbish”, a saintly individual opened the door and allowed him early, exclusive access. The aware and considerate staff made for a micro climate of autism appreciation where Isaac could freely frolic around in train bliss.

Talking of trains (which Isaac rarely doesn’t do) Isaac’s monologues of multiple station names and their adjacent roads are – at the times when he’s open to communicating this extraordinarily processed and recalled information – received with relish by friends. In awe of his photographic memory and encyclopaedic knowledge, blessed by his idiosyncrasies, these fleeting episodes affirm the value of his ‘difference’ and how it can instil optimism in all. 


In fact he possesses an ever increasing, loyal and more than understanding band of buddies. Cousins mainly, who understand the need for one on one so will selflessly come round alone for a playdate with Isaac. Where he may squeeze parts of their bodies for sensory input and happy social expression; and to compensate his struggling body awareness. He may need more treats, dictate when he immerses himself in his iPad, watching something he’ll learn by parrot fashion and regurgitate in times of stress. These few cousins more than tolerate – they get and feel taught too. The lack of abstract chit chat is made up by admiration of his humour and personality. Even the impossible to manage despair and sadness he (very audibly) feels in his marrow at home time, when transition tests the inflexibility autism to the max, is met with no judgement or irritation

When things are good, it’s an extended family micro climate where his exuberance, eccentricity and infectious hysterics, just makes them smile and laugh. It’s so gloriously spirited.


And, no one finds him funnier than that big, at times immovable, fixture in his life, his sister, Tabitha. Someone who needs to be kind and caring forever; perhaps when he’s not being. Her resilience to his (actually in the main, benign) physicality defies her little-ness.

They clash, of course. My wife mediating magically. But there is a kind of beautiful complementary nature to their interactions. Her typically evolving play is imaginative, implying the fine spatial and visual skills that he is so bravely battling with. Compering her mini tea parties can become quite chaotic – she creates, he crash, bang wallops. But Tabitha loves his rebellion somehow.


Both types of play have merit – they simply must do in our universe. And I’m convinced Isaac picks up the pros of reciprocity in transient times. A light goes on, for a spilt second, as he witnesses the reward of sharing; and they both beam. He calculates cause and effect using her as some sort of giant abacus. He still demonstrates a propensity to repetitively play with inanimate objects. Most recently absorbing himself one dimensionally in a piece of pizza dough – he spoke and cared for it quite lovingly; it was moving; Tabitha seemed captivated too.  

As she was, as if seated breathlessly in an atmospheric auditorium, by his extraordinary delivery, word perfect and completely from memory, of the entire Gruffalo story; most amazingly, in the exact tone and tenor of the film they’d both been rapt by. This sublime skill of his – entertaining and enthralling Tabitha (and us) in equal measure.  


Finally, and so fortunately, we have family who just rally round where necessary. When I was struck down by a 24 hour debilitating migraine, a loving grandfather picked up the pieces with immense thoughtfulness. Isaac’s schedule had been torn to shreds; me and my wife were no longer going away for the night; his grandparents would no longer be staying the night. He wailed at bed time that “my papa has to be here in the morning,” because that’s what had been planned, a nugget of fact he was grasping on to in a frenzy. Quite beautifully, papa (having not stayed the night, because I was bed ridden) returned in the early morning to stabilise his grandson. He went out of his way because he perceived that was the only way.

All these events and relationships emphasize just how safe and comforting the many man made microclimates of kindness, openness and awareness are, when we are lucky enough to find ourselves in them. Sometimes in public, usually not. Where awareness has been impressed upon people with vigour.



Who knows the longevity of this not impossible to locate kindness? I feel tears when recollecting the tantrums that people interpreted abjectly in the early years, when kindness was at best evasive. I block out the din of inner dread when contemplating him getting older. Where the world is one of dipping in and out of things; with intuitive filters and edits life-saving tools for folk – anathemas to how Isaac sees the world, pursuing excessively, fixating, immersing, obsessing. When his quirks may be not as refreshingly received. A crushingly conformist world at odds with those deemed odd.


Yet, for now, the 8 year old Isaac dwells in certain places and climates where kindness abounds. And for that, I’m incredibly grateful.

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