A day in the life of a mother

This blog is about a day in the life of a frum (orthodox Jewish) mother with small children.

Tuesday, August 21, 2007

Walk a mile in my shoes...

Before I write about my visit to the the CNE, I have to vent a bit about something.

Every day for the August session of camp, I had to wait with my 5 kids at the bus stop in front of one of my daughter's classmates house. He also was going August session. I explained to the mom that my oldest has Aspergers syndrome and ADHD as she seemed puzzled about some of his antics, like his obsession with her air conditioner unit (he likes to watch the blades turn around when its on), or sometimes how he might not get certain social cues and may come off as being nosy or rude in a regular child. She said she understood, but that is a total crock. This past two weeks she has been rude bordering on the point of nasty to my two sons. My 3 1/2 year old is not special needs, just an average normal busy boy, but combined with #1's antics I guess its too much for her. My #3 accidentally knocked over bubbles and she screamed at him. He was okay but I was pissed at her. I understand she is 8 months pregnant but thats not an excuse for her rude behaviour to my sons. I am trying hard to keep my mouth shut, but she is so judgemental. she has 2 kids 3 years apart, perfect little angels apparently. #1 can't help certain things, she is so rude about it. Its not like he is a normal boy who is just being bratty or strange. The bus stop is very challenging for him. There are a lot of distractions for him, he is also not good at waiting for more than 5 minutes. She speaks to him in an impatient tone. Bad weather especially makes him anxious and it was cloudy out several times the past week. I am glad tomorrow is the last day of camp. I am fighting the urge to say something nasty to her back about it. Its not worth the argument. You can't argue with a narrowminded snob who can't understand why a child on the autism spectrum is not behaving like her perfect kids. I feel reminded of the poem, welcome to holland. My #1 has taken me on a very different path than I expected to go in life with kids but it still ends up being nice, just a bit different. I feel hurt when some people do not understand about autism/aspergers and then be nasty about certain autistic behaviours that the child really can not help.


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Here are some facts about autism and asperger syndrome for people who may not know. Next time you see a child having a tantrum you should think twice before offering unsolicited advice. A child with aspergers/autism looks completely normal. You can not tell by looks alone.

(Quoted from Wikipedia)

AS is characterized by:[1][25]
Narrow interests or preoccupation with a subject to the exclusion of other activities
Repetitive behaviors or rituals
Peculiarities in speech and language
Extensive logical/technical patterns of thought
Socially and emotionally inappropriate behavior and interpersonal interaction
Problems with nonverbal communication
Clumsy and uncoordinated motor movements
The most common and important characteristics of AS can be divided into several broad categories: social impairments, narrow but intense interests, and peculiarities of speech and language. Other features are commonly associated with this syndrome, but are not always regarded as necessary for diagnosis. This section mainly reflects the views of Attwood, Gillberg, and Wing on the most important characteristics of AS; the DSM-IV criteria represent a slightly different view. Unlike most PDDs, AS is often camouflaged, and many people with the disorder blend in with those who do not have it.[28] The effects of AS depend on how an affected individual responds to the syndrome itself.[citation needed]
Social differences
See also: Asperger syndrome and interpersonal relationships
The unwritten rules of social behavior are said to mystify many with AS and have been termed the hidden curriculum.[29] People with AS must learn these social skills intellectually through seemingly contrived, dry, math-like logic rather than intuitively through normal emotional interaction.[30]
Non-autistics are able to gather information about other people's cognitive and emotional states based on clues gleaned from the environment and other people's facial expression and body language, but, in this respect, some people with AS are impaired; this is sometimes called mind-blindness.[31] People with mind-blindness are frequently unable to interpret or understand the desires or intentions of others and thereby are unable to predict what to expect of others or what others may expect of them. This sometimes leads to social awkwardness and inappropriate behavior.
It is not claimed that people with AS lack emotions. The concrete nature of emotional attachments they might have (for example, to objects rather than to people), however, often seems curious or can even be a cause of concern to people who do not share their perspective.[32] Alexithymia, a Greek term coined in 1972 by P.E. Sifneos[33] meaning literally "lack of words for emotions", is a personality trait of "people who have difficulties recognizing, processing, and regulating emotions".[34] Recent studies suggest that 85% of people with ASDs have alexithymia.[35]
Failing to show affection—or failing to do so in conventional ways—does not necessarily mean that people with AS do not feel affection.[citation needed][clarify] Understanding this can lead partners or caregivers to feel less rejected and to be more understanding. Increased understanding can also come from learning about AS and any comorbid disorders.[36] Sometimes, the opposite problem occurs: the person with AS is unusually affectionate to significant others; and misses or misinterprets signals from the other partner, causing the partner stress.[37]
Speech and language differences
People with AS typically have a highly pedantic way of speaking, using a far more formal language register than appropriate for a context. A five-year-old child with this condition may regularly speak in language that could easily have come from a university textbook, especially concerning his or her special area of interest.[38]
Literal interpretation is another common, but not universal, hallmark of this condition. Attwood gives the example of a girl with AS who answered the telephone one day and was asked, "Is Paul there?" Although the Paul in question was in the house, he was not in the room with her, so after looking around to ascertain this, she simply said "no" and hung up. The person on the other end had to call back and explain to her that he meant for her to find him and get him to pick up the telephone.[39]
Individuals with AS may use words idiosyncratically, including new coinages and unusual juxtapositions. This can develop into a rare gift for humor (especially puns, word play, doggerel and satire). A potential source of humor is the eventual realization that their literal interpretations can be used to amuse others. Some are so proficient at written language as to qualify as hyperlexic. Tony Attwood refers to a particular child's skill at inventing expressions, for example, "tidying down" (the opposite of tidying up) or "broken" (when referring to a baby brother who cannot walk or talk).[40]
Children with AS may show advanced abilities for their age in language, reading, mathematics, spatial skills, or music, sometimes into the 'gifted' range, but these talents may be counterbalanced by appreciable delays in the development of other cognitive functions.[28] Some other typical behaviors are echolalia, the repetition or echoing of verbal utterances made by another person, and palilalia, the repetition of one's own words.[41]
A 2003 study investigated the written language of children and youth with AS. They were compared with neurotypical peers in a standardized test of written language skills and legibility of handwriting. In written language skills, no significant differences were found between standardized scores of both groups; however, in hand-writing skills, the AS participants produced significantly fewer legible letters and words than the neurotypical group. Another analysis of written samples of text, found that people with AS produce a similar quantity of text to their neurotypical peers, but have difficulty in producing writing of quality.[42]
Tony Attwood states that a teacher may spend considerable time interpreting and correcting an AS child's indecipherable scrawl. The child is also aware of the poor quality of his or her handwriting and may be reluctant to engage in activities that involve extensive writing. Unfortunately for some children and adults, high school teachers and prospective employers may consider the neatness of handwriting as a measure of intelligence and personality. The child may require assessment by an occupational therapist and remedial exercises, but modern technology can help minimize this problem. A parent or teacher aide could also act as the child's scribe or proofreader to ensure the legibility of the child's written answers or homework.[43]
Narrow, intense interests
AS in children can involve an intense and obsessive level of focus on things of interest, many of which are those of neurotypical children. The difference in children with AS is the unusual intensity of the interest.[44] Some have suggested that these "obsessions" are essentially arbitrary and lacking in any real meaning or context; however, researchers note that these "obsessions" typically focus on the mechanical (how things work) as opposed to the psychological (how people work).[45] Those with a creative proclivity may be more interested in music or art, rather than in fiction, especially ones whose content is intended to arouse emotions, such as romance novels etc.[citation needed]
Sometimes these interests are lifelong; in other cases, they change at unpredictable intervals. In either case, there are normally only one or two interests at any given time. The interests are often linked in some way that is logical only to the AS individual. In pursuit of these interests, people with AS often manifest extremely sophisticated reasoning, an almost obsessive focus, and a remarkably good memory for trivial facts (occasionally even eidetic memory).[46][47] Hans Asperger called his young patients "little professors" because he thought his patients had as comprehensive and nuanced an understanding of their field of interest as university professors.[48]
Some clinicians do not entirely agree with this description. For example, Wing and Gillberg both argue that, in children with AS, these areas of intense interest typically involve more rote memorization than real understanding,[46] despite occasional appearances to the contrary. Such a limitation is an artifact of the diagnostic criteria, even under Gillberg's criteria, however.[49]
People with AS may have little patience for things outside these narrow interests. In school, they may be perceived as highly intelligent underachievers or overachievers, clearly capable of outperforming their peers in their field of interest, yet persistently unmotivated to do regular homework assignments (sometimes even in their areas of interest). Others may be hypermotivated to outperform peers in school. Symptoms may be seen by obsessional absorption with inanimate objects, such as watches and clocks; or a predominant interest in systematic things like numbers, indices, telephone directories, encyclopedias, dictionaries, or measuring scales. The combination of social problems and intense interests can lead to unusual behavior, such as greeting a stranger by launching into a lengthy monologue about a special interest rather than introducing oneself in the socially accepted way. However, in many cases adults can outgrow this impatience and lack of motivation and develop more tolerance to new activities and meeting new people.[28]
Other differences
Those affected by AS may show a range of other sensory, developmental, and physiological anomalies. Children with AS may evidence a slight delay in the development of fine motor skills. In some cases, people with AS may have an odd way of walking, and may display compulsive finger, hand, arm or leg movements,[50] including tics and stims.[51][52]
In general, orderly things appeal to people with AS. Some researchers mention the imposition of rigid routines (on themselves and/or others) as a criterion for diagnosing this condition. It appears that changes to their routines cause inordinate levels of anxiety for some people with this condition.[53]
Some people with AS experience varying degrees of sensory overload and are extremely sensitive to touch, smells, sounds, tastes, and sights. They may prefer soft clothing, familiar scents, or certain foods. Some may even be pathologically sensitive to loud noises (as some people with AS have hyperacusis), strong smells, or dislike being touched; for example, certain children with AS exhibit a strong dislike of having their head touched or their hair disturbed while others like to be touched but dislike loud noises. Sensory overload may exacerbate problems faced by such children at school or indeed adults at work, where levels of noise in the classroom or workplace can become intolerable for them.[50] Some are unable to block out, as in habituation, certain repetitive or background stimuli, such as the constant ticking of a clock, or a television in another room of the house. Whereas most children stop registering this sound after a short time and can hear it only if they consciously attend to it, a child with AS can become distracted, agitated, or even (in cases where the child has problems with regulating emotions such as anger) aggressive if the sound persists.[citation needed]
The flicker of fluorescent lighting or computer monitors at low refresh rates (both common in schools) can be very disturbing visual stimuli for AS people, contributing to otherwise inexplicable headaches, bad moods and agitation.[54]
A study of parent measures of child temperament found that children with autism were rated as presenting with more extreme scores than typically-developing children.[55]--

Maybe I should print this out and show it to her, so the next time #1 starts playing with the knobs on the sprinkler, or starts going on a lecture about computers LOL. #1 is so smart with computers. he figures out stuff I don't even know how to do LOL. I am going to try to ignore this other mother and not let her make me feel bad.

Anyway, about the CNE. We had a great time. The kids got to pet the animals in the petting zoo. There was a donkey, sheep, pigs, goats, horses (the horses were in a different part of the ex, behind a gate.) The kids got to see real cows being milked. There was a man on stilts juggling and a guy dressed like a tree from Lord of the Rings.

Ok, I made this post too long and am still feeling some residual crankiness from the bus stop this morning, and I have laundry to put away, so more later..


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