Xavier as Franklin Richards

Several comic stories have left impressions that have lasted over the decades. These  include epic story arcs like The Great Darkness Saga as well as individual issues.

One such issue is a Fantastic Four story called Childhood’s End. Reed, Susan, Ben and Johnny are attacked by a young adult of incredible power who is able to overpower them with dare. All the time their assailant poses two questions, “Why can’t I remember?” and “Who am I?” The answer it turns out to the second question is that he is Franklin Richards, the son of Reed and Susan Richards, aka Mr Fantastic and Invisible Woman. Franklin had involuntarily warped himself from being a kid of about six or seven to being a young adult and the first question, “Why can’t I remember?” refers to the void of the missing years, to the absence of experiences in the intervening time. Franklin goes  on to become  one of the opt powerful beings in the universe, but it is the child-man that he is in this tale, that out of the whole of comicdom, is for of a metaphor for Xave.

We live in a flat (apartment) where the rules are inimical to childhood and that coupled with a rock circle of friends has led to what I think must be a very boring life for Xave. His life becomes intertwined with that of Ben Tennyson  and Uncle Max, with that of Steve Rogers and Bruce  Wayne  and  Dora the Explorer. He makes his own Omnitrix, complete with different colours for when it is recharging, voices his concerns that Ultron will attack the Avengers and explores the world with Dora and  Diego. There  are days when he obsesses about Smurfs and talks incessantly about them describing the ingredients  needed to make Smurfette, talking can’t the villainous Gargamel.

All this has not been without benefit and has contributed to his knowledge extensively as well as played a monumental role in his speech development. He can discuss volcanoes, dinosaurs, Egyptians and much more. Yet, devoid of experience, these are the worlds he inhabits and finds so much more fulfilling than the real world, where he has his own girlfriend (a real one). When asked how she is, he will reply, “Good. Can I tell you about the Penguins of Madagascar?”

When asked what he did at school was, he recites a stock list of activities,  but can go on for hours about the Justice League describing each member reciting texts and scripts. When I berate him with, ” Batman is not real, mate. Bruce Wayne is not real,” he responds with,”I know, Daddy. This is just imagination.”

That he knows this delights me and shows that despite spending so much time lost in other worlds, he is still centred in reality. That he spends so much time in these places is because his reality is devoid of experiences. Xavier as Franklin Richards – “Why can’t I remember?” and devoid of a sense of self – “Who am I?”

The Spectrum of Mums

Being a mother is the most important job in the world and often the hardest. Every mother who gives a damn about their children and that is by far the majority deserves kudos, but I want to address this to mums of kids on the spectrum.

You have no idea how in awe I am of you as a group. Some mothers of ASD kids (and in that I include kids who have reached adulthood) are fortunate enough to have partners/spouses who either provide them with support and/or are involved fathers, many however are without that support and they push and fight  like true warriors. Solo fighters for their charges, tireless despite their  exhaustion, insisting on hope despite the prognosis of “experts” who are frequently less knowledgeable than the mothers themselves, but too arrogant to acknowledge that.

The mums ferry, deal with the therapists, the psychiatrists, the schools. They deal with the sensory issues and the dreaded stares of the unknowing, self-congratulatory mothers and grannies and shop attendants in the malls, sometimes with
aplomb, occasionally without, all the time driven by the desire for better for their kids.

Sleepless nights, perhaps from their child’s sleep issues, perhaps from reading, perhaps from searching the web, seeking to discern truth from deceit amongst the myriad therapies and quack offerings – giving them the knowledge which the “experts” can only claim, but do not have in the same huge measure that the spectrum mum possesses.

On behalf of those who can or should say it and don’t and on behalf of those as yet unable to say it,  you are incredible – happy Mother’s day.

A Momentous Step

Try reading this first in order to appreciate what follows – Caring for an autistic  kid while living in a shack.

The link above is a devastating insight into caring for an autistic person in third world conditions, but that may be starting to change in South Africa .
In the country’s parliament autism was introduced as an element of  the Social Welfare budget for the first time.

The budget speech singled out albinism and autism as having been historically neglected and autism and not provided for by government. It is the stated intention of the department of Social Welfare to remedy this and that is momentous news indeed.

I have not yet seen the speech and will be sure to comment on it when I do. However, this is a huge advance essentially kickstarting government involvement in caring for a community who has been sidelined for so long. It is important though, and this is the reason for this post, to acknowledge the efforts of many amazing people organizations who have worked against hope and with such dedication on behalf of all autistic people in this country, people at all levels of functioning, of all ages and indeed across all sections of our diverse society.

I will mention the names of neither people nor of organizations in order  to avoid missing a deserving name. To all of you, though, thank you from myself, Xavier, my wife and the South African autism community. A very heartfelt thanks!

The Rights of Autists are the Rights of Humans

I want you to imagine a country, any country. For the purpose of this exercise I will call my imagined country Hypothetia. Imagine now that forty years ago, the Hypothetian government passed a law prohibiting recreational use of schedule 4,5,6 and 7 drugs. I want you to go further and imagine that ten years after that, they passed a law banning the use of schedule 7 drugs. But something happened and ten years later or twenty years ago, they placed a new statute on the books making the use of heroin illegal. May I ask what you think of the effectiveness of at least the first two efforts at legislation? I will not answer, but hope you draw the same conclusions as I would.

In the light of that consider that in 1948, the General Assembly of the United Nations approved Universal Declaration of Human Rights. In 1971, they okayed the Declaration on the Rights of Mentally Retarded Persons, and in 1975 added to that the Declaration on the Rights of Disabled Persons. In 1989, they passed the Convention on The Rights of the Child and then as recently as 2006 passed the Convention on the Rights of Persons with Disabilities.

The image below is an effort to represent a flow for the last paragraph. The grey portions represent the United Nations efforts and flow downwards. The yellow diamonds are two declarations on the rights of autistic people written by bodies other than the U.N., with lines flowing to the U.N. documents that they refer to.

Here is the thing though, if the Universal Declaration of Human Rights had proved sufficient, it would have been the final document, but it wasn’t and therefore there have been subsequent documents, subsequent refinements. Just as in Hypothetia, the first law was insufficient, so was the first effort at a Human Rights declaration. The question arises is why if the initial document was complete, were additional documents needed and the only conclusion I can come up with is that the definition of “Human” was limited, not perhaps in the document itself, but in the societal perception of what a “person” was. An element of social history is the history of the view of others as less than human. The non-humanness of the slaves in Egypt, Greece and Rome, the sub-human groups that were the target of American and Nazi eugenics programs of the first half of the 20th century which deemed certain people as either (depending on the extremity of the view) unfit to procreate or unfit to live.

Bear in mind that some 37 years before the Universal Declaration of Human Rights, some groups in the US proposed euthanasia for people considered inferior and that before and during World War II, the Nazi regime did kill those which they considered inferior. Despite this a declaration to protect human rights written just three years after the end of the war somehow failed to protect groups that had been the victims of others views of their inhumanity. Why?

Two possible answers exist. One is that people with disabilities are invisible. Even in this century, the 21st century, I hear of parents advised, by so called experts, to institutionalize their children immediately a diagnosis of autism is made. That they are often wrong is in the context of the current post irrelevant, but reflects even now a drive by some to automatically, hide the different away. The second answer and one that may perhaps be worse than the first is that despite the declaration they were not considered to fall under the umbrella of “ human,” their humanity missed.

I believe in principle in the notion of “Gens una sumus”, “We are one family” and as a family tied by blood rises to the defence of their own, so we should rise to the defence of the other members of our human family, to the the defence of the invisible ones, unable perhaps to hear the way they are diminished, able perhaps to realise the contempt of other, but mute, non-oral unable to respond to the despite by saying, “Wait, I too am human!”

For me, the message of thia April is : To the Rotenberg Centre using electric shocks as aversive therapy, to those in France who still use outdated beliefs as the basis for their treatment of autism, to the South African government who to a large extent ignore the needs of autists and other special needs people. To those and any other who by action or omission violate the rights of an autistic or other special needs person, you stand guilty of violating the rights of a human. All people form part of this human family and stand equal with and as entitled, equal to the rights of any other human person, no less those with special needs.

Autism in the Round

I have been provoked (in a good way) into thinking about how I present autism and that this blog might be or is at odds with the more common experiences of autism. Sometime ago, I posted two separate posts, one titled Autism Sucks and the other titles Autism can also Rock. It is significant that the former has to date received about six times more hits than the latter and that is perhaps an accurate reflection of people’s views of the spectrum. The autism spectrum invokes a variety of responses in people. It certainly does in me.

It is not my intention in this blog to paint an unrealistic picture of the autism. Allow me to turn to an old and worn out analogy, the glass of water filled to midpoint. Some see it as half-full and others as half-empty. The analogy though begs a question, whether you see it as half-full or half-empty, what do you do? Drink it or fill it? I started the blog, I think, with the intention of starting a blog. To say the purpose was ill-defined and nebulous would be an over-statement. It has become defined over time with two primary purposes, one to tell the story of Xavier and also to detail one thing I hold true, that without belief, the level of achievement is diminished. This is the thing, I have no idea what that level of achievement will ultimately be. I believe in Xave, in his potential, but I cannot predict what his future is. The child now, that our son is presently outstripping, may continue to progress to exceed Xavier, if his progress stops or slows.

Life with Xave is irritating, frustrating, joyful, exciting and complex. It is by no means a constant seraphic chorus of joy. There is a gap between his expressive language and receptive language, which leads to continuing over-estimation of certain skills. Yesterday, I asked him to select six pages from a recipe book and write down the page numbers and I would photocopy them for him on Monday. This is a kid who is capable of using indices in his books on astronomy and on Egypt and tell me that information on the brachiosaurus is on page 47. Yet somehow, what he understood in my request was different to what I asked and he wrote the recipe names.

“No, I need the page numbers, mate, “ and he started to write out the recipes. It took half-an-hour to elicit a list of six page numbers. Based on his skill set, I assumed the task was easy and would be over in a flash. I was wrong.

In another recent incident, as part of his homework he was required to guess the number of fruit in various boxes drawn on the page – how many apples, how many bananas. This seems so simple, without issue and yet it led to a meltdown worse than we have had for quite a while. The requirement to engage in uncertainty was too much of a challenge. Tears, humongous sobs, interspersed with screams of “I WANT TO COUNT!!!” I slipped a hand behind my back and asked him to guess the number of fingers I was holding out. Sometimes he guessed right, sometimes he guessed wrong, sometimes I changed to his guess. It was fine. Change back to the homework and it was back to the tears and screams.

This blog though also covers and perhaps emphasizes too much the successes that Xave has and for this I will not apologise. It is my tribute to our son. One day I will die and if Xave starts to read this blog, he will learn the esteem in which I hold him and how much he means to me. But yes, I know full well that living with an autist is heaven and hell in turn. The degree and the nature differs for each family.

The glass is half-full. I try to fill it.

April Month – No Debates – Just Autism Action Month

Before I start the post proper, let me say that after suspending the blog and then tumbling back into it, I am feeling some kinship with the Phil Collins album – “Finally – The First Farewell Tour.” The truth bluntly stated is I missed two elements of it – the catharsis of posting and also of having my little digital speaker’s corner. So with an ironic nod to Phil, here I go again.

Autism awareness. Autism acceptance. This has been the debate so far this April, this autism month. Note I do not say autism awareness month or autism acceptance month. I do not care to engage in this debate because for me it is a ludicrous argument. You see both are required.

Let me start off with a statement I posted on Facebook a few days ago – The challenge is not whether you know about autism, but what you know about autism. On reflection, I was not completely right. The first challenge is whether you know about autism, the second is what you know, because from knowledge comes acceptance.

I am not certain if any research has been done into the efficacy of the Light it Blue campaign. It is a lovely campaign, and well-intended, but has it made a difference to either awareness or acceptance? I don’t know, but I hope so. But I am sure there are places it where it hasn’t, but it has be remarkably widely adopted to the extent that here in South Africa last year even Table Mountain was lit up blue and it was spectacular!

Cut to a village in rural Limpopo, over 1000 miles from Cape Town where the primary form of information the radio. Did any campaign for awareness or acceptance reach them. And this is not just a South African question. What about the village in the Andes? That rural community in India? To engage in campaigns that have an appeal in the first world and not the third world and here in South Africa, we have a diversity of worlds, is to fail to consider what will engage the person who has little knowledge, whose life has been taken up in the day to day fight for survival, perhaps collecting cardboard to sell in hopes of providing food for her kids tonight, even for that one kid she has who isn’t like the others. Awareness needs to reach from millionaire’s row to mud shacks.

The acceptance initiative is driven by the autism advocates, frequently in keeping with their initiative holding that an autist is an autist, entitled to respect as such and that no effort should be made to “normalise” them. I agree to a point, everything in fact up to “no effort…” It is well for people who atr able to communicate, to function fairly well to advocate that no effort should be made to alter autistic people. That I cannot agree with. My job as a parent is to see that my son is able to achieve as much as he can. I do not know what that level that will be, but I have to try and help him reach it, be it PhD or shelf-packer. It is also my job to let him know he is autistic and that neither he nor anyone else is entitled to look down on him for it and that he is entitled to speak out for himself with his own words, written, spoken or gestured, but in order for him to communicate I have to work at altering him, enabling him, empowering him. I accept him as being on the spectrum, that does not alter my duty as a parent. It needs to be recognised that autism does not only affect the autistic person and that too by the way is part of autism awareness. For parents and carers it can be incredibly difficult, but the rewards if and when they happen are out of this world.

Autism awareness. Autism acceptance. I don’t give a rat’s ass about the debate. Autists need both. Acceptance is impossible without awareness and awareness is pointless unless the ultimate aim is acceptance. So as far as I am concerned April is Autism Action month. Light it blue, pink, purple. Don’t light it, if you don’t want to. The question at the end of the day is how will this April improve the lot of autistic people? For acceptance or awareness, for autism and for autists, make this month a month of Autism Action.

Suspending An Autism Dad

Sometimes hard decisions have to be made and the decision to place this blog in abeyance is such a one. I have enjoyed the time immensely and thank each and every person who has read, liked and commented on my posts. There are multiple reasons for suspending the blog, but they collectively fall under the issue of time and the correlation between time and focus or distraction.

I have to consider Xave’s future and do my best to ensure he is provided for when my wife and I are no longer here. As lovely as winning the lottery would be, hoping for luck is not a reliable form of financial planning. To do my best for Xave’s security I have to enter a world essentially foreign to my nature; a world of income streams, ROIs and the like. I have two basic ideas and have tried to do a SWOT analysis on both.

Writing

When I am not rushed (seldom) and when I am tranquil (even more seldom) I write fairly well. Too many of the posts on this blog have been dashed, hurried notes, fraught with typos and grammatical errors and not examples of my best writing at all or even of good writing. Unfortunately though, the type of novels that interest me are not novels which as a general rule sell well. I lack the mind that can craft the type of novels written by Robert Ludlum, Agatha Christie and Wilbur Smith and I hopefully have the integrity not to try and replicate Fifty Shades of Drivel (hopefully I don’t write as poorly either).

Writing though is less than half the battle. Having it published and then having it sell are considerably harder. There are always possibilities of self-publishing electronically and this option does seem to have become more legitimate with the advent of digital bookstores than it was previously.

I have a number of novels, non-fiction works and even plays and a short story in various stages of completion or in some instances, conceptualisation even after culling the ideas which were either dismally poor or unworkable. Despite ridding myself of these, there is still a great deal to work on and in some instances a great deal of research material, and both the ideas and the research would be a terrible thing to waste.

Programming

I haven’t done programming for a number of years, though I was a programmer by profession, but have ideas for apps and more conventional software, both educational and remedial which I believe would be beneficial in both domains. The app store makes it much easier to sell software/apps and so the sales channel is available.

I would prefer I think to write for iOS. but at present the cost is prohibitive. In order to develop for iOS, a Mac of some description is mandatory and well, I have a PC. This restriction does not apply to Android Development so the start up costs are non-existent. I knew both C (used for iOS) and Java (used for Android), but need to refresh my skills or more accurately redevelop my skills in them. There is a rumour which sometimes crops up that Java will be allowed for iOS development, but if not there is software which will translate the code between the two platforms. So Android first and as money allows a shift into iOS. For other development yet, Java or PHP for web-apps as well aa some larger scale touch stuff and DB work. I can also leverage my academic background in the development of these products.

Development has the advantage over writing in that I don’t need to be tranquil to do it. Both however take time, which I have precious little of. For this reason, I have to prioritise something and this means giving up the blog and hoping like hell one of these income streams work.

There is a lovely quote from the trailer to the latest Star Trek movie, which is, “I don’t know what I am supposed to do. I only know what I can do.”

I will keep the blog available for when time allows and with the wish that a passing visitor may stumble upon something that helps them.

All again, thank you for having visited! I very much appreciated your time.