Whitterer on Autism

I conclude that young people today are very odd:-

“Where’s Mr.B today?”
“Why should I know?”
“Well…….you’ve only been together for a blink of an eye.”
“We’re not joined at the hip mum.”
“!”

“Mom?”
“Yes dear?”
“Fred says that he really likes me.”
“Ah. That’s nice.”
“He says he’s always liked me.”
“Super.”
“He says he’s liked me since Kindergarten.”
“My that is a long time.”
“But I was at a different school then. I think he’s tryin to butter me down.”
“I do hope not.”

“What it is?”
“What is what dear?”
“What?”
“What what?”
“Watt?”
“Oh…..a unit of energy. Why do you want to know?”
“Coz I wanna know how old it is?”
“How old what is?”
“Watt age?”

“I am love.”
“Indeed you are. Anything in particular?”
“Valentine.”
“Valentine’s Day was last month. We’re working up to St. Patrick’s Day now.”
“No.”
“No?”
“Valentine is being my best friend in the world ever.”
“Is he indeed. Is he new in your class?”
“No she is being my frog?”
“She? Frog?”

This term of art only has meaning in the quagmire of America. Many of us have older autistic children now, but if we could turn the clock back and recall those early days, what would have made a real difference? Wrap around services. I don’t know what your experience was, but this was ours.

We decide to investigate further. The pediatrician provided a referral. Without a referral we would be unable to make a medical insurance claim. With luck a pediatrician would be able to recommend several specialists to choose from, but that’s because we are in Silicon Valley. Less densely populated areas may have much less choice. With the referral in my hot little hand I make an appointment with my chosen specialist group, who are really a whole team of experts. The specialists have a waiting list and so we twiddle our thumbs for several weeks or months. We make sure we have reliable child care for other children.

Thereafter the team presents their evaluation of the child. We are provided with a lengthy list of therapists available to help our child. We contact each of the therapists each of whom has a 6 to 8 month waiting list for an initial evaluation. If there is no waiting list this should be a warning. The longer the wait, the better the therapist. Time ticks away and the child spins their wheels. Much later we commence therapy, attend each session and learn as much as possible from them so that we can practice at home, where they spend the majority of their time.

What then?

[*]After the first month, if you are incredibly efficient, you send in your first batch of insurance claims to your insurance provider together with a cover letter and receipts by certified [expensive] mail because otherwise they will deny all knowledge of the package.

Within the week you will receive a letter corresponding to each receipt from the insurance company, approximately 54, that each tell you to do nothing, that they have received your claim and that they will be in touch with you again shortly.

They get in touch shortly.

In any one receipt there may be any one or more, of the following errors: no date, no code, wrong code, no signature, discrepancies in the time. An additional letter is sent from the insurance company to detail each error individually in a separate letter.

You then return to the therapists to have all the errors corrected and send them all off again. In your haste you fail to send the parcel by certified mail. Not surprisingly, the insurance company claims that they have not received your corrected receipts.

Repeat.

Additional letters arrive to explain that until you have hit your deductible of $5,000 for each child, they won’t pay a penny. You wait a couple of months until you have hit the deductible and being again.

During the following months, if you’re very lucky, with a fair wind behind you, you may, and I repeat may, receive reimbursement to the maximum amount of 65% because you are out of network, i.e. those therapists that they endorse, who are too far away, and also have waiting lists and aren’t necessarily a good fit for your child, and of course there are very few of them in the first place.

Because several months have now past, the insurance company writes to inform you that they wish to ensure that the therapy is working. To ensure that the therapy is working you must now have an additional evaluation done by each therapist for each child, which will not be reimbursed, to prove that they are indeed still autistic and still in need of services.

You contact the therapists who go out of their way to re-evaluate the child that they initially evaluated less than six months ago. [three months is not uncommon.] Within a few weeks the new evaluations are ready and sent off by certified mail to the insurance company. The children continue to receive therapy in the interim. The bills continue to be paid by you, in the interim.

With the evaluations completed and bills mounting, you collect, collate and send in the next few months of therapy claims to the insurance company. Repeat from here[*] Repeat the whole exercise for child two and amalgamate the claims and double everything else.

But as always, I digress.

Wrap around services:- a co-ordinator. This person does not need any paper qualifications, they need to be a multi-tasker with a cranium full of common sense. Someone who does all the phone and paper work, especially form filling, who has your client referral number tattooed on the back of their hand, who finds the therapists, can ensure that the evaluator communicates with the therapists, interacts with the school, someone who copies and forwards each evaluation to all the other participants, talks with the local service providers for ‘in home services,’ ideally this person who comes to your home to provide services ‘in the home’ is also someone who speaks English or failing that, someone who likes children, finds a slot on the school bus that does leave before dawn or return after dusk, someone who knows that an hour and a half on a bus each way is not good for any child, especially when the school is only 7 minutes away, someone who can see anomalies, such as, what is the point of taking two children on the bus but leaving the typical one behind as ineligible because if you’re driving one typical, you might as well drive all three and therefore it isn’t a real service at all, which is kind of what they’re banking on because if no-one takes up the service then clearly it isn’t needed and that will save the budget some, someone with a slew of resources for allergies, specialist food sources, medical suppliers and sleep specialists, someone who knows a dentist who will accept autistic children, someone who understands that the transit taxi service to and from therapy is not an option for some children without specialist training first, that days are short if you find yourself ferrying children to and from therapy for thirteen different sessions per week after school, finds a good respite worker, a respite worker who could, just possibly, look after the typical child whilst the other two are at therapy because no-one else can take them to therapy, if not, you’re not actually helping, who has the forms for a disabled parking sticker application and corroborative evidence in support of the claim, or the forms for diaper and pull-up subsidies, someone who appreciates that sleep deprived children and parents with a wide variety of intermittent sleep disorders rarely pick up the phone because it is pointless unless there is the remote possibility of hearing the speaker’s words over the din and that e-mail is not a deadly sin and a far more practical way of communicating in the 21st century, and I won’t sue you if you make a spelling mistake, especially if you can only call between 10 and 4 when everyone is here and needs supervision, a person who not only provides specialists with an 8 month waiting list but also has a forward reminder system so that follow up is at least a remote possibility, and yes I understand that you need to conduct our evaluation for services in our home with the children present so that you can check but please understand that at best you will only have 10% of my attention to complete your forms and answer your questions whilst I cater to everyone else’s needs simultaneously, someone who understands that my estimate of the number of minutes I spend on laundry per week is very approximate and subject to irrational peaks and troughs but roughly approximates to a minimum of three loads a day and that I am unable to accurately deduct the percentage amount of time spent upon other family members laundry, ditto food production, ditto cleaning, someone who has heard these terms before:- autism, speech delay, elective mute, echolalia, sensory issues, pica, smearing, tactile and oral defensiveness, to name but a few, someone who doesn’t expect me to explain these terms to them in my children’s presence, someone who realizes that there are two of them, they are related, they’re brothers, they live in the same household, at the same address, together with the rest of their large family, they are autistic now, they were autistic then, they will continue to be autistic, you don’t need to check so often, I’ll let you know if either of them ceases to be autistic, they have names, different ones, the big one is called Owen, the little one is called Leo, Little Leo, does that help, although they are related and autistic, they are not clones, they are completely different from each other, someone who can fit all the pieces of the schedule together, remove all unnecessary duplications because there are two of them, ensures that all these different people know who everybody else is, what they are doing, why and when? If wrap around services started from day one, then this would mean, that amongst many other things, such as, kick starting the process of order, progress and family sanity, my time would be freed up to thrash the bloody medical insurance company into submission.

And that’s the brief version.

Well let’s just try and be polite about it and say that I have a sense of humour that isn’t shared by many. Because of my freelance status, I am generally careful about the tricks and jokes that I play upon other people. All too frequently, sarcasm, the lowest form of wit, is mis-understood and roughly translates to mean mean. Meaness is not the goal. The goal, broadly speaking, is joint attention and enjoyment, although a wee giggle wouldn’t go amiss.

Hence as I pick up another piece of paper mangled by the completely useless printer, I notice that the tear bears a remarkable resemblance to a bite mark. How can I resist? I march up to the first one with a cross expression. “Hey you Mr. Sonny Jim. No more eating paper if you will?” He looks at me blankly as I waggle the blank piece of paper in front of his face. “It were ent not me.”
“Yes it was. Look. It’s the exact same size as your teeth.”
“No. It is being too big for to be me.”
“You think?”
“Yes.” I see no glimmer of recognition so I pull him along with me to the next one so that he can witness and re-group and practice.
“Hey you Mr. Sonny Jim. No more eating paper if you will?”
His brother blinks at me, not vacant but engaged with other matters.
“No. I din dun do it.”
“It were ent not me neither,” repeats his little brother.
“Are you sure? Look it’s the exact same size as your bite.”
“No. I not.”
“Right then.” I haul them both along to repeat, regroup and practice with their sister.
“Hey you Miss Madam. No more eating paper if you will?”
She rolls her pre-teen eyes and notes her brothers’ presence, hovering and ever so slightly expectant, perhaps.
“Weren’t me.”
“Oh yes it was. Look it’s the exact same size as your bite!” She looks at the paper more closely. “Geez! It’s a load of old rubbish that new printer, innit?” No-one is responding as I wish them to respond. I purse my lips and glare at their mystified father. He removes his glasses to begin cleaning them, methodically, as he adds, “I seem to recall that you’re the only one who has ever been caught eating their exercise books in school.” Now they all look at me. Now they’re interested. “True, I have to admit.”
“You are eated paper?” he asks, incredulous.
“Yes. When I was at boarding school. We were always hungry and possibly bored.”
“Dey din dun feed you at your school when you were being a child?”
“They did,……..but not enough……..and we often had to fast on a Friday.”
“Fast Friday? What is dat being? I am liking fast, dat is my kind of a school.”
“No actually, it isn’t your kind of a school. It’s not speedy fast but ‘don’t eat’ kind of a fast. Come to think of it, that probably would suit you very well.”
“I dun fink I am liking dah very fast school for eating paper.”
“Yes, your mum probably has more trees growing inside her than anyone else we know.”
“Don’t be daft dad, that would only be if she ate tree seeds. Did yah eat tree seeds too mom?”
“No, just apple cores and their seeds…….and their stalks……..I was very hungry.”
“Are you……are you……….are you hungry now?” he asks tentatively.
“Starving!” I stuff the paper in my mouth and begin to munch with avid enthusiasm as I watch their faces, to my personal delighted satisfaction.

I’d eat the whole ream for that kind of joint attention.

If you enjoy caption competitions and photographs, you may wish to nip along to“DJ Kirkby” over at “Chez Aspie” and test your brain power.

Recently on “Victoria’s Stillwell’s” programme, ‘It’s me or the dog,’ on “Animal Planet,” they featured an exercise toy for dogs, especially our Labradoodle, Thatcher. This tremendously fun toy is of course completely “unobtainable” and all the stores have sold out. I know you’ll believe me when I tell you that after half an hours viewing, we had to have this toy, and not just for Thatcher the dog. Our dog Thatcher needs two, one and a half hour exercise sessions a day, but with the current rain schedule, this task has fallen solely upon my soggy shoulders. No big surprise there. However, with a little temptation for other members of the family, you too can take a little respite by making your own ‘fox on a stick.’

You will need:-
A flexible stick [not too long or may break or bend]
Duct Tape
Drawer liner plastic fabric
Swivel
Thick cord
Bungee cord
A strip of furry fabric or old stuffed toy
Bacon grease

First tape the drawer liner fabric to one end of the stick and build it up to fashion a handle for those with poor fine motor skills or elderly persons with other grip issues.

Slip the thick cord through the swivel and duct tape it to the other end of the stick.

Knot one end of the bungee cord to the swivel.

Slip knot the fabric or old toy to the other end of the bungee cord.

Spread a little bacon grease on the furry fabric and introduce the contraption to your dog. Once your dog is in a state of ecstasy over the bacon grease transfer dog and contraption to the garden and whiplash the furry fabric around the lawn and watch your dog revel.

Needless to say, my youngest son who favours long handled things of any kind is almost as ecstatic as the dog.

Hosted by “Tracy” at “Mother May I,” but the photo-picture below will whizz you right there with one click.

I’ve been very busy in the bowl / pot making department.

So I took a morning out to teach my daughter how to throw a pot on a wheel.
Pretty impressive stuff for a first timer!

This may look like my old design, but it’s a variation on a theme.

Can you spot the difference?

And yes, it is of great significance to me.

Some see a fish that looks like just all the others, indistinguishable from his fellows.

Some may see a rogue fish going the wrong way.

Others may feel an ironic association with eye contact, or maybe something else.

For me, it’s more that there is a different perspective, often more than one, but most of us are far too busy running with the crowd to notice alternatives and appreciate them for what they are, differences. Not better. Not worse. Different.

Hoping these little guys will be fired over the next two or three weeks when I hope to make them available on Etsy. Let me know if you need one, two or three outstanding freelance fish in your bowl?

Every once in a while I am surprised by my own behaviour.  It’s as if I have transported my being into the body of a  fly.  The fly  stands on the ceiling to observe me.  From this vantage point, I have a whole new perspective.  And there I am, running around in my dressing gown, in hot pursuit of a medium sized child.  I have a teaspoon in one hand full of pink goo and the other  hovers beneath, a cradle for the drips.

I suspect that each of them learned to recognize the crack of the child-proof safety cap on a medicine bottle from far too early an age.  It was always ear infections with raging fevers and accompanying pain.  The medicine was not associated with relief as it is for some but instead became associated with a chase.   Little fat chubby legs propelled them to scatter like gulls at the sound of the crack, all of them, regardless of who was the real victim.  The compensating M&M was insufficient to overcome the fight or flight response.   I doubt if a sack of M&M’s would be enough, nothing is enough to counteract that initial response.  All too often these little habits have their roots in the long distant and hazy past.   They build over time and reinforce themselves upon each additional exposure.  We run like rats through the groove of our own making.  Our brains tell us that we’re repeating the same mistake over and over again but somehow our bodies continue to follow that well worn path without question.  If there is a question, it is very quiet and ill formed.  Certainly insufficient to make us pause for more than a nano second and not enough to make us stop, think, re-group and start afresh.

Generally, these habits aren’t wrong, wicked or corrosive, merely completely daft, but it takes an intervention to put on the brakes and break the cycle.
“Mum?”
“Can’t stop now I’ve nearly got him.  Be with you in a minute.”
“What on earth are you doing?”
“I just need to give him his anti-biotics.  Now look!  I’ve missed him.  He’s hidden somewhere.”  I glare at my daughter, the cause and source of the medico interuptus.
“Look at you.”
“Look at what?”
“The medicine.”
“Yes, it was so much easier when they were smaller when I could use those squirty things.  Now I need better aim.”
“Is there any medicine still left in that spoon?”
“Of course.  I’ve hardly spilled a drop,  5 ml give or take.  I’ve had lots of practice. I’m an expert. I could run an egg and spoon race and win with a blindfold.”
“How apt.”
“Apt?”
“Blindfold!  Blinkered!  Barmy!”  she leans down to grab her little brother’s ankle and hauls him along in his blanket cocoon to the kitchen.  I mince behind them on tip toe, ready for the screams of protest.  “Come on you.  Up you get.  Let’s see you stand on your legs.”  My youngest son stands up, on his legs.
“Take a step nearer the sink and lean over so I can clean you up if you get all mucky.”  My son leans over the sink and juts his chin forward.  My daughter reaches for the spoonful of medicine, “open wide!”  He opens wide, very wide.  “Now swallow.”  He swallows and blinks hard as a little shudder ripples through his body.  “There you go.  Easy as pie.  The trouble with you is that you’ve made it into a game,” she announces as she folds her arms across her chest and leans back against the counter.  In one fell swoop she has managed to achieve what I have been trying to achieve for approximately 12 years, give or take a decade.  Despite myself I beam.
“What’s so funny?”
“Nothing……..” I lean against the opposite kitchen counter, “I’m just really glad that you’re they’re legal guardian.”  My son slumps against me to add “Mum’s game is fun…..I dun wan a guardian angel.”

The drips have escaped here and there, neon and glistening, a veritable feast for a fly.

I wonder if angels do clean up when they’re off duty?

“Why?” asks Nonna, without preamble or clue.
“Why what?”
“Why……do dey still go to therapy?”
“Because it helps them.”
“When do dey stop?”
“I have no idea, although a couple of years ago I was there when somebody graduated.”
“Graduated?”
“Um…….had learned enough skills to be able to cope.”
“Cured?”
“No such thing.”

“But why do we have to wash the glasses when they only had water in em Mom?”
“Because your lips were on them. Do you want to drink out of a glass that’s had somebody else’s lips on it?”

“Why?”
“Why what dear?”
“Why……I am have to go to therapy?”
“Because therapy helps you do things that you find difficult.”
“Where?”
“Where what dear?”
“Where is difficult?”
“Um…..”
“You said…….it’s lost.”
“Did I? Oh right, ‘find,’ as in lost……I meant……some things are difficult for you to do. Therapy helps make them easier to do and before you ask, speech therapy helps with difficult speech.”
“Mom?”
“Yes dear?”
“Don’t put words in my mouth.”
“!”

“Mom?”
“Yes dear?”
“Why?”
“Why what dear?”
“Why ……he am say……’you’re weird’?”
“Because…….he hasn’t learned that people are different…….life would be very boring if we were all the same………we’d only need two people on the earth if we were all just clones, or maybe only one come to think of it.”
“Barbi!”
“!”

It becomes a habit every day, day after day.

Every day at about 7:50 I announce departure time. Time for school. It’s the last transition of many, in our finely honed morning routine.

Currently we have a new hic-cup. My announcement prompts him, a reminder. Now he knows that it’s time to leave it also means that he remembers that he wants to take a Garfield book to school to share with his new pal. Instead of prompting him to move towards the car, I inadvertently give him a tip off to go and seek out the book. Wrong direction. Wrong prompt. Insufficient time to accommodate this new step.

I bound after him, up the stairs, three at a time because I’m cross and I am utterly sick of the deviation from the routine. Late for school is a really bad way to start the day. It wouldn’t be so bad if he could just nip upstairs and grab a book, but nipping isn’t in his nature. His nature dictates that considerable quantities of time must be expended upon choice, far too long for the tightly micro managed schedule. If the morning routine is derailed, then the last transition can unravel the previous hour’s work.

I yell at his swiftly departing shoes as they disappear. Yelling is nearly always a mistake. A louder voice is no more likely to be heard than a quieter voice. “Stop now and come down here!” A shrieky voice is quite properly tuned out.

This habit has developed as a direct result of my own behaviour. Unwilling to leave the other two unsupervised downstairs, I have permitted him to saunter off at the last minute to get a book. Day after day, day after day. If I leave the other two unsupervised downstairs those last few crucial minutes of the routine deviate down a cul-de-sac. The little one removes shoes, the coat gets lost, a bathroom call means that clothing is superfluous but worst of all by far, is that he’ll start to do something new, which means that there will be an additional ‘stop,’ and an additional ‘transition,’ which means an additional meltdown.

If time allows I can prompt him through re-dress, re-shoe, wash hands, flush the loo, hunt the coat. If not, I can do them all for him in about 4 minutes flat. The one thing I can not do is prevent the inevitable meltdown from ‘stopping’ the new activity. I do not want to deal with additional meltdowns just before school. The minutes before school must be calm, organized and structured so as to give them all the very best chance of experiencing a successful day.

Today, the hic-cup must be eliminated. I find him in his room sprawled on the floor surrounded by a slew of Garfield cartoon books. I close my mind to the downstairs scene where the clock is ticking backwards. Downstairs the morning routine is in reverse. I look at my son. He is approximately twelve and a half minutes away from making a positive choice. I can feel steam bursting from my ear-drums. My voice is too hard. My face wears a scowl. I grab the nearest book and pull him to his feet. Outside the engine revves as his father waits for the delivery of three children on the driveway, the sound pumps my blood pressure. I march him and the book back down stairs as I berate him with a detailed example of defiance. Too harsh. Too fast. Far too many words. Irritation makes me irrational, too quick to categorize.

Back in the kitchen he is small, shiny eyed and round shouldered but just about holds it together despite the over-kill. His little brother blinks out of the toilet, stitchless, hands full of Pokemon Trading cards, alarmed by the static electricity that ignites the room.

Tomorrow will be different. Tomorrow will be better. Tomorrow I can prompt him, twelve and a half minutes prior to departure, to go and choose a book. It’s not defiance but determination

Fortunately for me, he’s a very forgiving kind of a child.

In my early lurking days, I came across a blog where a mother listed a virtuoso account of her son’s destruction, together with photographic evidence. She bewailed the many woes of being a mother to such a child. Much to my [secret] delight, her followers berated her in no uncertain terms. There was mention of terms such as ‘lack of supervision, boredom, any attention, even negative attention is better than no attention and my own personal favourite:- where the hell were you while this was going on?’ It was a salutary lesson to a pre-blogger. This is not to say that when children mis-behave their parents are always to blame, more that we are often, no matter how unwittingly, co-conspirators in our own demise.

Around here there are lots of parental excuses because we have small brains and feeble jugglers. There are issues about midlines and poor core body strength which we tend to gloss over, especially early in the morning. We concentrate on basic routines, to aim for school on time. The minutiae and the big picture collide. Speech production and psychology are upper most, to set them up for a successful day. Attitude adjustment is a priority. There is no point arriving at school in the negative. If we want them to learn and give their teachers a fighting chance.

It’s complicated.

If my son is draped across the table eating breakfast then ‘stop slouching!’ is not going to build his self esteem. ‘Sit up straight’ is not a command conducive to building morale. ‘Let’s see how tall you can sit,’ might be better but it’s also a distraction from the complex multi tasking of food consumption, sitting and talking. This is especially true when sitting is a new skill, consumption has widened and talking is still a challenge.

It’s not merely a question of table manners. It’s also discrimination between siblings. Different standards apply which appear unfair.

It’s also practical. As food flies around due to poor fine and gross motor co-ordination, spilled milk is a slippery hazard for the elderly. Scattered cereal is a temptation for the dog and puppy training must also continue. Then there is my own perspective. Children bathed in their own breakfast must be washed, as must the entire room and furniture. It’s more than sour milk and sour grapes.

If I interject with a verbal irrelevancy, it’s means we will never recover ground within the allotted time span. It is simply easier to let the matter drop. Other times, one small minor adjustment can make all the difference.

My words are merely a warning that I shall be laying hands upon him. I move around to the back of his chair to tuck him in, rearrange his body parts and realign the bowl and spoon to a better position as I mutter, “just let me line you up for success sonny Jim.”
“Mom?”
“Yes dear?”
“I am not being Jim.”
“I know dear.”
“I am not being sunny.”
“Er……yes……sorry about that.” I peter out, thwarted by logic, as usual.
“Try, try, try again,” choruses his little brother, “itsan idiom.”
“What’s an idiom dear?”
“If at first you don’t succeed.” I resist the urge to yawn or slouch onto the soggy table myself. We trot through our regular mantra, which roughly translates to ‘I can do it, I know I can.’ We repeat them, as saying them out loud is more effective, buoys them up until we approximate cheer leader status, when they pop out of their chairs, ready to take on the world. “Mom?”
“Yes dear?”
“I’m gonna have a succeedful day.”
“Oh good!”
“Yeah……I’m gonna be EOTM.”
“Er…….EOTM? What does that mean dear?”
“Employee of dah Month.”
“!”