Okay, so Nicholas gets a birthday present from his aunt and uncle.  The present is some kind of kit that allows you to hatch out artemis eggs in a little plastic pool. As Nicholas won this week's Top Scientist award at school, it is no surprise that Nick loves the kit.  We followed the directions very carefully, adding spring water to the pool, putting the packet of eggs into it and then following that with a tiny pinch of salt. According to the directions, we have only to await the hatching of the artemis.

One problem: the artemis don't hatch. And while this in itself is no great loss -- if you google image artemis you will discover they look a lot like headlice but live, thank God,  in water -- I feel a kind of responsibility to these water lice creatures. I cannot help but feel I've failed them. If you look at them under a microscope or even a magnifying glass they look much like an animal. They have eyes (compound, in fact!), two antennae, little feet like things that are called thoracopods and something called a telson that may be unique to ugly lice-like mini-monsters who disappoint everybody by remaining dormant in their egg states despite every effort.

Anyway, I have no idea why I write this, except that I recently spent some time with a friend of mine discussing whether or not worms can feel pain. Nicholas has taken an interest in fishing and, while I do eat fish and so understand just how much of a hypocrite I am, I cannot bring myself to actually hook, spear, bludgeon or otherwise kill a fish.  Plus, the worm was bothering me. Does it feel pain? Does it realize it is being impaled? If so, what does that mean to a worm? I mean, do they mind?

I'm guessing yes, although to be honest it remains unclear.  Worms are strange, unique, unlucky little animals. Necessary, yet hated, used mostly as bait or eaten by birds. They do, however, have five hearts. But artemis, these things that are now sitting in a plastic pool of bottled water in my kitchen, they are just frankly useless. Plus, I've discovered that if they had hatched (and so far no sign) they'd grow up and then the big ones would eat the little ones. How traumatizing: cannabils in my kitchen.

I am wondering how long I have to keep them before pouring them outside? What would be a respectable amount of time? Two days? Five?  I have an awful feeling that one day I'll find the cat drinking out of the plastic pool and she'll be swallowing artemis eggs, which one must remember are actually lice. Parasites? Could the cat die? If so, do I want the artemis in the first place?

Science kits turn out to be very dangerous. I'll have to ask Nicholas what to do.

This week I’ve been fairly preoccupied with finding a secondary school for Nicholas. He’s only in Year 5 (that’s like 5th grade) but here in the Uk you have to select a secondary school from Year 7 forward, and you have to do it well ahead of time if you have a child with special needs.

The whole idea of finding a secondary school for Nicholas feels somewhat absurd to me, and I go along to the schools with a mixture of dread and the kind of guilt you feel kenneling your dog. When I ask Nicholas how he feels about secondary school, he gives a very appropriate and honest answer. "I don't like change," he says. Because Nicholas is a "statemented" child -- that is, he has a legal document that accompanies him telling whatever school he goes to that they pretty much have to help him or will find themselves in a whole world of trouble -- we have to choose the school earlier than the other children. This is not really meant to punish us. It’s meant to make it easier for us to get the school that we want for him.

One of the nice things about living in the UK if you happen to have a child with special needs (and there are very few nice things so you need to celebrate those few) is that you get priority when it comes to school placements. This is not to say that all parents get what they want, but in the county where I live it isn’t too bad. There is this one problem, however, which is that any school that you put your child in will likely have 1000+ children in the school. In fact, 1000 is considered “small”. 1500 is quite normal. Some have up to 1800. I cannot see how a school of 1000+ (and again, it is likely to be a greater number) can benefit my child. The entire point of the intervention we are now trying out for Nicholas is to help him to learn how to establish meaningful relationships with others. In a big school like that, a school in which it is quite possible to get lost in the chaos of an ordinary day, I suspect the only meaningful relationships he will likely develop will be with the teaching assistants.

And then there is the question of how they manage his education within the school. I am not doubting their intentions (people working with special needs kids tend to be a pretty nice bunch) but if their goals are to ensure he can learn information, we are just not on the same page. It isn’t that information is bad. In fact, information is good. But if he sits in the classroom absorbing the information given, then survives the chaos of transitioning to the next lesson only to find that he has to sit and absorb yet more information, I cannot see his autism being addressed in the slightest.

But therein lies the difference between me and many educators now in the mainstream who are taking children with ASD under their wing. I want the autism, itself, addressed while they are going to deliver to the child the information within the curriculum such that they can be a “success”, that is, do well on tests. I spent some time trying to explain this to a woman who is with our Local Education Authority. She’s a very nice, bright woman who is ambitious for our children. I explained that Nicholas needs to learn to “borrow the perspectives” (one of Dr. Steven Gutstein’s phrases) of other people or else he’s going to find life very difficult, however good or bad his grades are. She agreed, but it wasn’t until I explained how this might become a crucial issue within the classroom that she really “got it”.

I explained that you could have a teacher in the classroom trying to teach this vast, diverse group and struggling a little with one of the students who is really playing her up. The student (let’s call him John) is mocking the teacher, drawing attention to himself, tipping back on his chair, being slightly obscene, etc. So the teacher (God help her) is annoyed. She is stressed. She turns to John and lays into him, at which point the boy stops being quite as difficult (for the moment). The teacher, who is only human, is still riled, but has maintained her composure.

And then, at that exact time, my son pipes up with some sort of odd remark, inappropriate question, or just the general confusion of not understanding what he’s supposed to be doing right now. So the teacher (by now thinking of early retirement) turns to Nicholas. She has a hard, angry expression on her face – not because she is angry at Nicholas but because she is generally distraught. Now, if Nick were not Nick, he’d know that the teacher’s mood had nothing to do with him, but due to the behaviour of John (who is still very much on the teacher's mind). But Nick will not know that. He’ll think, That teacher is angry. I must have done something wrong. He will go silent. He will withdraw. The teacher will then say, “What did you want, Nicholas?” He’ll start playing a video in his head to block her out, and suddenly we have a possible situation developing. At best, Nick will be a bit put off by that teacher. At worst, he’ll see school as another place he feels uncomfortable.

Why did this happen? Not because there is anything wrong with the teacher and not even because John is such a fantastically obnoxious teenager (who just to agitate us will probably grow up be really successful, elected to office, and wage illegal wars across many nations). It happened because Nicholas couldn’t borrow the perspective of the teacher. It isn’t because he couldn’t read emotions. He read the emotion all right. But he didn’t get the big picture of how emotions work, of why the teacher might be feeling like she is. That’s the kind of thing we work on with Nicholas. It is very hard to set up scenarios in which we can practice. It is even harder to get him to work with us.

You might be wondering exactly how we get a 10 year old with many interests (none of them people-oriented) to participate willingly in his therapy. That’s simple. We just pay him. It is not exactly how it is meant to be done, but I’m living at the edge over here. Today he bought a Dr. Who magazine and a tiny remote control car with money he earned by doing therapy. I just wish someone would pay me.

A Therapy Diary

 I am often asked how my own son, Nick, is doing. I often wonder that myself, in fact, and have begun to keep a diary of what we try, how responds, what is going on in his life generally.  I wondered if it would be helpful to parents if I blogged the diary. I cannot promise it will always be exciting, or funny, or particularly well written (I’m writing a new novel at the moment and so all my really good prose goes into that anyway). I cannot promise I will offer any great insights, either. But what I can do is open up my life to those who may want to take a closer look.  After all, Nick presented very definitely with full blown autism at the age of 2, with a diagnosis at aged 3. He had no language, no play skills, and though he always seemed attached to me – me in particular – he was otherwise aloof to people. Oh, and he stimmed, had obsessions, seemed perpetually in ya-ya land.  Just finding him in his own house took a while as he didn’t respond to my calling.  So, he was not an Asperger child, nor a particularly “high functioning” child. He was in a world of trouble.

We pretty much did what was written in Daniel Isn’t Talking, a structured, playful skill-based program that endeavoured to help move Nick up the developmental ladder.  It was behavioural in approach, but no mass trialling.. Well, we did some mass trials early on but I later vetoed them.  We did “mixed drills”, always made sure he was willingly and happily engaged, and we didn’t take much data. It was about as play-based as ABA can get.

These days we are focussing on a different approach. It isn’t that he no longer has any structured teaching – we working on him learning to tie laces and we do it through structured teaching, for example – but the backbone of our approach can be described best as focussing on his social and emotional abilities.

This is not to say that he has perfect language or academic skills, that he presents pretty “typically” but just needs some fine-tuning – no way. But we’ve discovered what is holding him back at this point is his own motivation to be part of a social scene of any sort. He has to be HIGHLY motivated to engage in a group. So, he’s pretty chatty, bright and fun at Robotwars events, for example.  But anything else, from regular school to a drama club to going to a friend’s house or getting through a birthday party sends him inside himself.  And he is suffering from not being able to get his point across, whatever language he has, simply because he doesn’t imagine the point of view of the listener. Well, I could go on, but I’ll stop there. It will become abundantly clear exactly where Nick is in any case, just by reading what I blog in the weeks to come.

There are two places to go if you want to learn more about the therapy we are doing. One is www.rdiconnect.com where you can begin to learn a little about Relationship Development Intervention.  The other is www.barryprizant.com  where they advocate what is called the SCERTS model.  SCERTS stands for “Social Communication Emotional Regulation and Transactional Support”, not that this will help you any.  But you can download two excellent articles right off Barry’s homepage that will explain exactly what it is.  RDI and SCERTS do not do exactly the same thing, these two organizations seem to be working off the same kind of research. Take a look if you like, and you’ll be hearing how Nick and I are getting on with it in this blog.

You can't win them all and I’ve certainly not won over Dr. Michael Fitzpatrick with my novel, Daniel Isn't Talking. He doesn't like that the mother in the novel questions the safety of the MMR. He doesn't think that early intervention helps children with autism; he doesn't think the gluten and casein-free diet is worth a try, and suggests that the great burden of trying to help your child with autism is a vain pursuit which will only leads to frustration and bitterness.

Dr. Fitzpatrick’s interpretation of the novel is a bit unusual. He seems to think it demonstrates the overall failure of a mother to help her child with autism, while I am sure that it shows exactly the opposite. He also has this crazy idea that Melanie is hugely rich, which is not the case at all. I think he got confused because Melanie had (years before having children) inherited some money from her mother, who had died of breast cancer. She bought a very tiny, rundown cottage in Wales for £25,000. Of course, when Daniel is diagnosed she tries to sell the cottage in order to pay for therapy. Admittedly, a cottage of any sort, even one with no running water, could be considered a luxury. However, I don’t really think it qualifies as the “second home” described by Dr. Fitzpatrick:

“For Leimbach’s Melanie, with a house in one of London’s most exclusive neighbourhoods, things reach such a pitch that she is forced to consider selling the family’s second home, a cottage in the country. It is good that some parents can rely on support and resources of this kind - what worries me is the burden that the pursuit of these regimes imposes on families who lack any such reserves.”

Okay, perhaps he read it quickly or just glossed over the details about the cottage. I can understand that. However, since when does trying to help your child with autism (regimes?) ever impose on other families who do not have the resources to do the same? I am not sure I understand him.

I will let you decide what you think of his article. Here is the link, as well as my response, which may or may not be printed on his comments page:

http://www.spiked-online.com/index.php?/site/article/1283/

Dear Dr. Fitzpatrick,

The character, Daniel, in my novel, Daniel Isn't Talking, undergoes a great deal of developmental progress through the book. Daniel receives an eclectic form of ABA to which he responds positively. My own son, who is now fully verbal and whose IQ score is now well within the normal range, who attends mainstream school and is well-liked by his peers, improved dramatically on just such a program. Your article seems to suggest that early intervention is of little worth to our children with autism and you specifically denigrate ABA. Having seen the progress of my own son and many other children like him, I feel you are may be underestimating the value of early intervention (of which ABA is one example) as well as biomedical interventions such as the GFCF diet.

I do hope that parents reading your article are not put off from finding help for their children. My novel demonstrates some of the struggles that many of us go through trying to get help for our children with autism, but it also shows just how valuable are our efforts. Although you were correct in saying that Daniel Isn’t Talking is based in part on my own life, the only aspect of the novel that is from my real life is the condition of the child, Daniel, at age three when he is diagnosed and the improvement he makes because of early interventions of various types.

With all respect, I would like to add that doing nothing, trying nothing, hoping for nothing, will not make living with a child with autism one bit easier.

Marti Leimbach

Dear Marti-

I just finished reading your newest novel "Daniel Isn't Talking". I had read a review of it in one of the magazines while sitting in the waiting room of my son's doctor. I must confess, it's not the kind of book I usually read, since my whole life is full of daily reminders of my own son's autism, but I jotted the name down anyway. I must admit, once I began reading the novel, I couldn't put it down. I kept asking myself, "Does this author know me?"

The feelings, experiences, despair and ultimately hope that this mother experienced are all too true. I went through exactly the same emotions, ultimately had my husband leave me, and sacrificed my personal happiness for that of my son and for my other two children (who are normal). I can't say that I have recovered...but I am changed. I have always said that that single day when I was told of my son's autism humbled me forever. No longer was I the former homecoming queen, 4.0 student, ready-to-conquer-the-world type of woman. I was now the woman who had to camouflage the bite marks that her son left on her while struggling to get away in tha Safeway supermarket, the woman who once contemplated handing out notes explaining her son's disability to those disdainful onlookers who thought I was the worst mother.

I became the "psycho" parent, having to convince everyone that her son had something wrong with him, even though he had the most beautiful face on the planet and it was "I" who was indeed crazy. I began throwing up before church, terrified that my son would crawl under the pews and begin licking someone's feet (he loved doing this). I look around my home and see reminders of his pre-MMR days when he had a smile as normal as any toddler's. A time where he could laugh and count in two languages, play peek-a-boo, and give me real hugs.

Like your heroine, I went through battles to reclaim my child. He went from being normal to not talking, looking at me, would want to spin for hours, and would scream when there were more than 4 people in a room. My daily goal was to get the kids to sleep so that I could watch my son's face and pretend that he was normal. I decided that I had to do something positive...or check myself into a mental hospital. With my mom's support, I went went back to graduate school and got a Masters in Special Education and Emotional Disabilities so that I could be my own son's advocate. I became the LOVAAS expert, and did my own ABA. I was lucky enough to be in one of the best school systems of the United States, where he got the attention that he needed. In short, my son is now entering the 9th grade in high school. He is an honor student and is tackling classes like Algebra next year. He is not Aspergers, but rather has what you would call high-functioning autism, much like Daniel in your book. He went from not knowing that I was his mother at 5 years old, not knowing how to point or communicate, to writing beautiful creative stories, and engaging in in-depth discussions about racial issues in our society. to asking the the guide at the Aquarium if sting rays have echoalia much like bats. He is an intermediate level skier, dives off of cliffs on Greek islands, is an avid horseman, and enjoys long walks with his mom.

I am grateful for my son. Thank you for writing such a lovely book. The love story you added gives me some hope in that area as well. I plan on giving it to my "estranged" husband to read, so he can have some insight on my feelings, and maybe see that I was never that crazy to begin with.

Below is a short essay I wrote for Autism Speaks. To find out more about Autism Speaks, visit their website at www.autismspeaks.com 

 The novel, Daniel Isn’t Talking is reflects the situation for my family between the years of 1999 and 2001, what I’ve come to know as the autism years. Of course, the autism years have carried on. It’s just that I have grown so accustomed to them that they have ceased to require the appellation autism years and have just become the years, like any years. Daniel Isn’t Talking is not a memoir – very few of the events of the novel ever happened in my life – but the time of my son’s diagnosis had a particular feel to it, a rawness, a panic, and a call to courage that was unlike anything I had ever experienced. It is because of this – what would you call it? – emotional content that the novel is autobiographical. It contains within it exactly one aspect of my life: what it felt like to be me. What it feels like now.  

I have been asked in interviews how the novel differs from my own life and I can answer that question very easily: my real life was not sexy or funny, while the novel is both. In my real life I never fell in love with a therapist or threatened my husband’s lover with the prospect of babysitting my son. I never yelled at a psychologist for being patronizing and useless, never did battle with Bettleheim, even in my dreams.

My real life was dull by comparison, but there are things that I share with Melanie, the mother in Daniel Isn’t Talking, things that all of us with autistic children share. We all know the fear, the frustration, the tremendous, almost physical need to have a genuine reciprocal relationship with our child. There was a time not so long ago when my son did not look my direction or answer to his own name. There was a time when each day was so exhausting I woke with dread. We have changed, he and I, and it is not simply a matter of where he is on the CARS or the spectrum. We all know the incredible joy of seeing progress that the parents of “normal” children take for granted. We know people who helped us in ways we cannot even begin to describe, and to whom we will always be indebted. We all know a child like Daniel.  

Writing about Melanie allowed me to see myself freshly -- not as me, exactly, but as a woman separate from myself and for whom I found it easier to have compassion. By creating an alter-ego, by understanding how helpless she feels in the face of such a diagnosis, how incompetent and inadequate she considers herself, how ill-prepared for what is being asked of her, I was for the first time able to see myself truly as I was then – and in a manner I cannot quite describe, it moved me.

Like most mothers, I have run myself hard through the autism years. I have seen myself as a vehicle for my child’s progress, as the receptacle of my husband’s sorrows and fears, as a brave but trembling knight in a battle that I cannot entirely understand. I have been terrified by diagnosing paediatricians, disregarded by government bureaucrats, cowed by egotistical psychologists, shamed by every imaginable passer-by in supermarkets and public buildings. I have held back tears until I got to the car, clung to Nicholas and wept and sometimes in the middle of it all I’ve wished I could just run away.  

Never in any of this did I consider myself – by which I mean, myself as a human being separate from my family. However, in writing Daniel Isn’t Talking I was able to visit Melanie and in an extraordinary manner, meet myself as I was back then, with my young boy of 3 years, with my daughter just starting nursery school. I was able to examine Melanie’s thoughts, her motives, her expressions of grief and joy over her son, her ambivalent loyalty to her husband, and in doing so I can look freshly at my own life and make sense of it all.

This is, of course, what novels do: make sense of our diverse, inelegant, astonishing lives, weave together the apparent disarray of events and people and present to us freshly a kind of truth about ourselves that does not involve facts so much as themes. By writing about Melanie I am able to hide myself a little, even while exposing everything of importance about myself. I am able to unveil my most private thoughts in the most public of arenas and express something that I suppose I was hoping to tell all along but, between therapy sessions and arguments with the local education authorities, I didn’t have time.  

Daniel Isn’t Talking is the story that all of us with children with autism share, about someone who tries just a little more than is healthy for the child she loves, who asks more of herself than anyone can possibly give and then feels inadequate for not doing more. It shows us how we’ve changed, for surely we are different now; even our children are different. Everything has been tested: our marriages, our commitment, our loyalty, our trust. Everything has cost us greatly and been worth it. We have lived and are living extraordinary lives. The world sees us as extraordinary – or will do upon reading Daniel Isn’t Talking – not because of the novel, but because of the sort of people who the novel reflects: all of us who have fought daily, at any cost, for children whom others thought were hopeless.

We are doing so well, don’t you think?

Okay, this is a straightforward plug for an upcoming event – but I am so excited about this that I have to let people know.

In London on May 18th at Waterstones, Notting Hill, at 7pm I will be appearing with Kamran Nazeer, author of "Send In The Idiots -- Or How We Grew To Understand The World".

Kamran, himself, was diagnosed with autism and attended a school for autistic children 23 years ago. The school no longer exists, but Kamran has traced the lives of several of his classmates and tells the fascinating story of how they have coped with autism through the years. I have read this book and it is truly wonderful. It is a compelling read, beautifully written, and very enlightening.

With two authors talking about their direct experiences about autism from these very different points of view, the evening promises to be quite something. Anyone who is living in London, please pass on the message to any friends or family who may be interested. The event is free.

Below is a review of Kamran's book from the San Francisco Chronicle. I think his book is on the charts in San Francisco and has definitely been selling really well in the states, generally, which is no easy feat from a first time British author! 

 From San Francisco Chronicle

"Send in the Idiots is the always candid, often surprising, and ultimately moving investigation into what happened to those children. Now a policy adviser in England, Kamran decides to visit four of his old classmates to find out the kind of lives that they are living now, how much they’ve been able to overcome—and what remains missing. A speechwriter unable to make eye contact; a messenger who gets upset if anyone touches his bicycle; a depressive suicide victim; and a computer engineer who communicates difficult emotions through the use of hand puppets: these four classmates reveal an astonishing,thought-provoking spectrum of behavior.

Bringing to life the texture of autistic lives and the pressures and limitations that the condition presents, Kamran also relates the ways in which those can be eased over time, and with the right treatment. Using his own experiences to examine such topics as the difficulties of language, conversation as performance, and the politics of civility, Send in the Idiots is also a rare and provocative exploration of the way that people—all people—learn to think and feel. Written with unmatched insight and striking personal testimony, Kamran Nazeer’s account is a stunning, invaluable, and utterly unique contribution to the literature of what makes us human."