About my take on life with a child who has been diagnosed within the autism spectrum. If you are looking for crying and whining about how awful it is look elsewhere. If you are looking for woo, look elsewhere! This blog is dedicated to the love and laughter that my children have brought into my world.
Saturday
Schools out! The June Circus
This time of year is always a rough one for me. There is so much going on that I spend my time on auto pilot, often feeling completely overwhelmed with all my to do lists.
Both the 'babies' have their birthday parties for friends. I always worry over this. (Will anyone show up for my son? He does not have many friends, well only one actually, but he thinks everyone is his BEST friend.) His party was simple. Pay the pool. Show up with cake and drinks. Our local pool does everything else. They supply the plates, cups, balloons, decorations and they supervise the kids in the pool). Five kids showed up, and he had a wonderful time. I had baked cupcakes (in 80+ weather, sigh), decorated with cookie crumb mud and gummy worms. While they swam and yelled I hid in the party room with a book and a coffee, grateful for the break.
The only remarkable moment was when they were playing with one of his gifts (a very cool magnetics set with zillions of those metal marbles) and one of the boys knocked the pile of marbles so they flew across the floor in a dozen directions.
My son yells "OH! OH! MY BALLSS!!! CATCH MY BALLS!! GET THEM!!!" As he hopped and did his 'excited dance'.
Well, the group is all at that wonderful giggle stage of 11. They all stopped and snickered 'balls, hehehehehe'.
Now, Little Man has been trying to figure out that secret code of social interactions. To my surprise he NOTICED that they were all being 'strange'. He turns to look at one buddy and says "What? Why is that funny? You bumped the table and knocked them everywhere!" (He has his puzzled look on-a look that is easily misconstrued for angry.)
(Snciker, Giggle) "Sorry Little Man." the boy in question gasps. "What did I knock everywhere?" Grinning mischieviously.
"All of my balls!" Little Man repeats, to the delight of the little monsters, who all shriek hysterically with laughter. (That commercial is playing in my head, the one where the mom is feeding kids hotdogs and asks them if they want 'bread or buns' and they all giggle and snicker over the word 'buns'.)
Little Man looks at them all. He waits for them to calm down. "Why is it funny?" He asks again. They all start giggling again.
Now, I can see that my boy is getting cranky over this whole deal. I turn to one of the other boys and say "How about if I go use the washroom, and you explain to him why that word was funny?" His eyes go wide. "Seriously. Or do you want me to?" I asked. Poor kid turns purple and says "NO! uh, I will!!"
No clue what was said, but my boy was content with the exchange.
The other party...My now 12 (sigh) daughter is very social but as a preteen she decided to have a 'cool' party. This of course meant that she had all sorts of plans that I had to fulfil. Her theme was 'So you think you're a teen?' I'm an avid photographer (not a pro) and she decided I should set up an area for 'glamour photos'. She also decided they would have dance contests, singing contests, wit battles etc.
In case this was not enough of a challenge, she also booked this for the last day of school. Which meant I had to bake at 6 am, to be able to run to town quick after dropping the kidlets off to school (forgot ink for the printer) and race back to the school for year end awards. School was dismissed at 1130, party was at noon. (sigh)
My husband escaped with Little Man (they both enjoyed the one on one time) and I considered escaping too, but before I got my shoes on the gaggle of preteen girls arrived.
In spite of myself I had a great time. They all hammed it up nicely for photos. I printed off each child a 'contact sheet' such as you get for your portfolio, and a selection of the best and silliest pics. The young ladies entered each contest with a decided lack of modesty and a great deal of enthusiasm.
I was enthralled with this group of girls (only 6 girls, felt like 20, lol). They are all incredibly different-both in looks and temperment. Yet they are a tight knit group. Fascinating, truly.
As for the awards, both kids are on the honour roll so I of course am as pleased as punch.
Delillah is excited for summer break, but Little Man is feeling lost. His routine is gone which always distresses him. Hopefully I can provide enough structure to keep him level. He is also distressed as his teacher next year is not the teacher his sister had this year. This is the first time in his experience where he does not 'inherit' his sisters teacher (they are a year apart).
At his IEP we decided to allow more typing and scribe help, which means I have to work on his hand writing myself. It is hard to decide what help is priority with Little Man. His reading is grade lvl this year (dyslexic) but his spelling and hand writing is grade 2 lvl. He cannot prove his intelligence if he has to write his answers. It takes him about 5 minutes to write a complete sentence. So.. Scribe it is. Thankfully, he is going into grade 6, which in our school means the students receive laptops to use for school work. We are going to work on typing skills over the summer. It will be his last year at our wonderful school, as our district is changing its grade splits. We are to have 'middle school' after this next year, which will be grade 7-10. Unfortunately middle school is actually in the same building as our high school. I am unsure if this will be a good move for Little Man and have considered moving him to our private school. The private school is church based, smaller (which would be great for one on one help) yet does not have access to some of the extra goodies one finds in public school. (no sport teams, no exposure to woodworking etc). I meet with the principals of both schools in september of this year, so I guess we will see.
Monday
Age of Autism part two
Listing prominent spokespersons and writers for this organization and their 'credentials'. I am going to go through them as I hear of them, or read their work. What I am seeking is credentials. Being a parent of an autistic or even an autistic person does not count. Are any of these persons Scientists? Doctors? Trained in the field they are talking about?
You can make your own decisions from there
The Editors:
Dan Olmstead:
As per Wiki Dan Olmsted is an investigative reporter. Olmsted wrote The Age of Autism report series about the controversy surrounding the possibility of a link between autism and vaccine injuries. His columns on health and medicine appeared regularly in the Washington Times and were syndicated nationally from UPI's Washington D.C. bureau. He currently edits the Age of Autism website, billed as the "Daily Web Newspaper of the Autism Epidemic".
Criticism
Scientific studies have confirmed that there is no link between thimerosal and autism.[5]
In a critical assessment by the Columbia Journalism Review of the thimerosal controversy, Olmsted's reporting on unvaccinated populations has been characterized as "misguided" by two anonymous reporters. Both sources "believed that Olmsted has made up his mind on the question and is reporting the facts that support his conclusions".[6]
A 2006 study demonstrated a genetically determined syndrome with symptoms often associated with autism specturm disorders, including "cortical dysplasia, focal epilepsy, relative macrocephaly, and diminished deep-tendon reflexes". Intractable focal seizures began in early childhood in several children of the Old Order Amish studied.[7] Olmsted was criticized for missing this population of autistic Amish children.[8]
Another link to check out for Dan HERE
KIm Stagliano
Well, I searches and searched. I found blogs she has written, lots of AoA stuff she is linked to, twitter and so forth. Strangely enough there are no listings for her credentials. (unless being a parent makes one an expert. If anyone has more information on this 'managing Editorf' of Age of Autism, please post it.
Mark Blaxill: Editor at large of AoA Again, no credentials that in any way make him an expert on autism or vaccines, or quackscience. I did find many sights with his blogs, interviews, propaganda.
as per THIS site
Mark Blaxill (Vice President and Director, Safe Minds)
Mark Blaxill is the father of a daughter diagnosed with autism and Vice President of SafeMinds. He spent most of his professional career at The Boston Consulting Group (BCG), where he was a Senior Vice President until he left the firm in 2006. While at BCG he was the leader of the firm’s Strategy Practice and led firm initiatives in the area of globalization, open source software, intellectual property and network analysis. He has had wide industry experience, including client assignments in information services, semiconductors, pharmaceuticals, consumer electronics, forest products, retailing and pulp and paper. He has worked on a wide range of business problems for CEOs and heads of strategy of Fortune 100 and Dow Jones index companies, including corporate portfolio strategy development, business unit strategy, strategic planning process development, research and development strategies and process reengineering. He is currently writing a book on the subject of intellectual property strategies for business and launching a new business venture. He is a named inventor on BCG’s first ever patent application.
He holds an MBA from Harvard Business School with distinction and a bachelor’s degree in international affairs from Princeton University where he graduated summa cum laude and Phi Beta Kappa. He is also the author of several publications on autism: including "What's going on? The question of time trends in autism" (Public Health Reports, 2004); "Reduced mercury levels in first baby haircuts of autistic children" (International Journal of Toxicology, 2003); and "Thimerosal and autism? a plausible hypothesis that should not be dismissed." (Medical Hypotheses, 2004). He has been a frequent speaker on autism related issues, including conference presentations for Neurotoxicology (August 2006), Defeat Autism Now! (May 2001, October 2006), Autism One (May 2004, 2005 and 2006), National Autism Association (November 2005), NIEHS (August 2005) and the Institute of Medicine Immunization Safety Review (July 2001). He is married to Elise and has two children, Sydney and Michaela. He lives in Cambridge Massachusetts.
The 'Writers'
Katie Wright:
Katie Wright is an American actress. As per WIKI
KP Stoller, MD
President, International Hyperbaric Medical Assoc
Medical Director, Hyperbaric Medical Center of New Mexico
Kind of interesting, but a search on this name pulled up only four pages of hits. Each of those hits seems to belong to well known quacksites, all of them about autism, mercury, biomendquack and so forth. I searched wiki, nothing. I searched newspapers (real ones, not online self acclaimed newspapers) nothing. Lots of anti vaccine sites. Again if anyone has more info on this 'dr' please post.
David Kirby\
David Kirby is a journalist based in Brooklyn, New York, and was formerly a regular contributor to the New York Times since 1998, he is author of the 2005 book Evidence of Harm - Mercury in Vaccines and the Autism Epidemic: A Medical Controversy.
Full page HERE
Jake Crosby
Jake Crosby is a student with Asperger Syndrome at Brandeis University who plans to major in history, and a Contributing Editor of Age of Autism (As per Age of Autism)
To be continued.
Patterns?
Noticing patterns
My husband and I (I am happily remarried) were discussing things and we got on to the subject of patterns. Particularly patterns of Little Man's behaviour (my autistic child).
I have been keeping a journal about Little Man's eating habits, sleeping habits, behaviour displays, learning spurts etc, since he was two. So we went through the journal and made some graphs to see if we were onto something. (Funny, I know, but I am driven with a NEED to understand my child. When you have a child that is unable, or uninterested of sharing their feelings and thoughts it is difficult to know what exactly goes on in their sweet heads!).
Lo and behold a pattern emerged. Little Man goes into what we call 'hissy fit mode' after a long stretch of predictable behaviour and little growth. (allow me to go into a ramble about this statement. By predictable behaviour I am referring to his tendency to do the same things, at the same times. He will go months having the same behaviour problems, the same routines, the same interests. And by 'the same' I am being oh so literal. He will get up at the SAME exact time, eat the same exact breakfast at the same exact spot at the table. He will engage in the same scrap with his sister EVERY morning. 'little growth' refers to him not seeming to intake any new information or learn any new skills or even improve on existing skills during this time. Not academically, not socially, and even physically he seems to grow little.)
His hissy fits are always around some circular idea he can not seem to let go of. His sister will call him over to see something and he's flipping out. He will tell me over and over 'I'm not a dog for her to call!!' and he wont hear any discussion on it until he is doing flipping out. He paces his room in a circle, works up to crying and yelling. This can last from 15 minutes to 5 hours. We have tried talking, flicking lights, touching (his hand, or lifting his chin). We have tried consequences (loosing electronics, being grounded, extra chores). We have tried ignoring. So far, no results in ten years of trying to break through these fits. This will continue for days, weeks and once for 2 and 1/2 months with fits occurring with alarming frequency over asinine things from: If we have yogurt tubes or not; the weather; him deciding we are demanding he be 'perfect'; some comment he took literally; something he can't find, etc.
Then, after these fits, we see incredible growth. (For example in a two week period he went from reading at an early grade one lvl to reading at an early grade four lvl, learned to ride his bike without training wheels, tied his shoes for the first time, lied about something and grew a shoe size and a clothing size)
So we smilingly refer to this as 'batch processing'. It truly seems that Little Man stores information over long periods of time, and perhaps (this it only my theory) when he starts to actually process the information he is overwhelmed and thus we get the 'behaviour'.
Would love to hear thoughts back on this from other parents of high functioning autistic children.
Hugs and Laughter
Faith and Science, Myths and Facts
Faith and Science, Myths and Facts
Let's start with some definitions of certain words and phrases:
Faith: n.
1. Confident belief in the truth, value, or trustworthiness of a person, idea, or thing.
2. Belief that does not rest on logical proof or material evidence. See Synonyms at belief, trust.
3. Loyalty to a person or thing; allegiance: keeping faith with one's supporters.
4. often Faith Christianity The theological virtue defined as secure belief in God and a trusting acceptance of God's will.
5. The body of dogma of a religion: the Muslim faith.
6. A set of principles or beliefs.
[Middle English, from Anglo-Norman fed, from Latin fidēs; see bheidh- in Indo-European roots.]
Fact–noun
1. something that actually exists; reality; truth: Your fears have no basis in fact.
2. something known to exist or to have happened: Space travel is now a fact.
3. a truth known by actual experience or observation; something known to be true: Scientists gather facts about plant growth.
4. something said to be true or supposed to have happened: The facts given by the witness are highly questionable.
5. Law. Often, facts. an actual or alleged event or circumstance, as distinguished from its legal effect or consequence. Compare question of fact, question of law.
—Idioms
6. after the fact, Law. after the commission of a crime: an accessory after the fact.
7. before the fact, Law. prior to the commission of a crime: an accessory before the fact.
8. in fact, actually; really; indeed: In fact, it was a wonder that anyone survived.
Hypothesis–noun,
1. a proposition, or set of propositions, set forth as an explanation for the occurrence of some specified group of phenomena, either asserted merely as a provisional conjecture to guide investigation (working hypothesis) or accepted as highly probable in the light of established facts.
2. a proposition assumed as a premise in an argument.
3. the antecedent of a conditional proposition.
4. a mere assumption or guess.
Data-noun
1. a pl. of datum.
2. (used with a plural verb) individual facts, statistics, or items of information: These data represent the results of our analyses. Data are entered by terminal for immediate processing by the computer.
3. (used with a singular verb) a body of facts; information: Additional data is available from the president of the firm.
Opinion–noun
1. a belief or judgment that rests on grounds insufficient to produce complete certainty.
2. a personal view, attitude, or appraisal.
3. the formal expression of a professional judgment: to ask for a second medical opinion.
4. Law. the formal statement by a judge or court of the reasoning and the principles of law used in reaching a decision of a case.
5. a judgment or estimate of a person or thing with respect to character, merit, etc.: to forfeit someone's good opinion.
6. a favorable estimate; esteem: I haven't much of an opinion of him.
Scientific Method:Scientific method refers to bodies of techniques for investigating phenomena, acquiring new knowledge, or correcting and integrating previous knowledge. To be termed scientific, a method of inquiry must be based on gathering observable, empirical and measurable evidence subject to specific principles of reasoning.[1] A scientific method consists of the collection of data through observation and experimentation, and the formulation and testing of hypotheses.[2]
Although procedures vary from one field of inquiry to another, identifiable features distinguish scientific inquiry from other methodologies of knowledge. Scientific researchers propose hypotheses as explanations of phenomena, and design experimental studies to test these hypotheses. These steps must be repeatable in order to dependably predict any future results. Theories that encompass wider domains of inquiry may bind many hypotheses together in a coherent structure. This in turn may help form new hypotheses or place groups of hypotheses into context.
Among other facets shared by the various fields of inquiry is the conviction that the process be objective to reduce biased interpretations of the results. Another basic expectation is to document, archive and share all data and methodology so they are available for careful scrutiny by other scientists, thereby allowing other researchers the opportunity to verify results by attempting to reproduce them. This practice, called full disclosure, also allows statistical measures of the reliability of these data to be established.
Empirical
From Wikipedia, the free encyclopedia
This article is about the concept in science. For other uses, see Empirical (disambiguation).
The word empirical denotes information gained by means of observation, experience, or experiment.[1] A central concept in science and the scientific method is that all evidence must be empirical, or empirically based, that is, dependent on evidence or consequences that are observable by the senses. It is usually differentiated from the philosophic usage of empiricism by the use of the adjective "empirical" or the adverb "empirically." "Empirical" as an adjective or adverb is used in conjunction with both the natural and social sciences, and refers to the use of working hypotheses that are testable using observation or experiment. In this sense of the word, scientific statements are subject to and derived from our experiences or observations. Empirical data are data that are produced by experiment or observation.
The standard positivist view of empirically acquired information has been that observation, experience, and experiment serve as neutral arbiters between competing theories. However, since the 1960s, Thomas Kuhn has promoted the concept that these methods are influenced by prior beliefs and experiences. Consequently it cannot be expected that two scientists when observing, experiencing, or experimenting on the same event will make the same theory-neutral observations. The role of observation as a theory-neutral arbiter may not be possible. Theory-dependence of observation means that even if there were agreed methods of inference and interpretation scientists may still disagree on the nature of empirical data.
Variations
In a second sense "empirical" in science may be synonymous with "experimental." In this sense, an empirical result is an experimental observation. In this context, the term semi-empirical is used for qualifying theoretical methods which use in part basic axioms or postulated scientific laws and experimental results. Such methods are opposed to theoretical ab initio methods which are purely deductive and based on first principles.
In statistics, "empirical" quantities are those computed from observed values, as opposed to those derived from theoretical considerations.
In economics, "empirical" generally refers to statistical or econometric analysis of numeric data. Other forms of observation-based hypothesis testing are not considered to be "empirics."
The use of the adjective empirical, especially in scientific studies using statistics, may also indicate that a particular correlation between two parameters has been found, but that so far, no theory for the mechanism of the connection is known.
Core Beliefs: Core beliefs are your most basic assumptions about your identity in the world. For instance, they depict you as beautiful, or ugly, worthy or unworthy, lovable or unlovable. From these beliefs you create rules to regulate your behavior.
Conspiracy theory: A conspiracy theory is a term that has come to refer to any tentative theory which explains a historical or current event as the result of a secret plot by usually powerful Machiavellian conspirators,such as a "secret team" or "shadow government".
Conspiracy theories are often viewed with scepticism because they contrast with institutional analysis of historical or current events, and are not supported by conclusive evidence.[2] The term is therefore often used dismissively in an attempt to characterize a belief as outlandishly false and held by a person judged to be a crank or a group confined to the lunatic fringe. Such characterization is often the subject of dispute due to its possible unfairness and inaccuracy.
In the late 20th and early 21st century, conspiracy theories have become commonplace in mass media, which has contributed to conspiracism emerging as a cultural phenomenon. Belief in conspiracy theories has therefore become a topic of interest for sociologists, psychologists and experts in folklore.
For an overview on Critical Thinking go to: http://en.wikipedia.org/wiki/Critical_thinking
sources:
http://en.wikipedia.org/wiki/Scientific_method
www.dictionary.com
http://en.wikipedia.org/wiki/Empirical
Thoughts and Feelings-Matthew MckKay, Ph.D, Martha Davis, Ph.D, Patrick Fanning
http://en.wikipedia.org/wiki/Conspiracy_theory
http://en.wikipedia.org/wiki/Autism
Age of Autism Myths and Lies part 1
Age of Autism Myths Part 1
In my opinion organizations such as Age of Autism, Safe Minds, and Generation Rescue should be monitored and fined for every myth they knowingly post to terrify us parents. They are conspiracy theorists who attempt to lead parents of children with autism into 'treating' their child(ren) with unsafe pseudo medical practises.
Being a parent is already frightening with the news bombarding us with kidnappings, child slayings, molestations, bullying on the playground, child drug use etc etc etc. As a parent of a child with autism, (Something I knew next to nothing about before he was diagnosed) I was seeking answers and explanations.
Imagine my shock as I came across websites claiming a vaccinations cause autism! That it is all a great big conspiracy between the gov't, the FDA, the CDC, big pharma etc. So let's look at some of their sensational claims, shall we?
The Myth that vaccines cause autism:
Many of these websites and followers of such are claiming a direct relationship between vaccines and autism. They quite often share anecdotes of how their children were jabbed with MMR and instantly became autistic. This has been scientifically proven as FALSE.
14 studies
This is their 'proof'. Go 'here' to read about the twisting that was done to facts. The website for 14 studies was created by 'generation rescue'. (More to come on that later).
Mercury Poisoning is often quoted as being the reason why vaccines are dangerous.
Mercury Poisoning:
Signs and symptoms
Common symptoms include peripheral neuropathy (presenting as paresthesia or itching, burning or pain), skin discoloration (pink cheeks, fingertips and toes), edema (swelling), and desquamation (dead skin peels off in layers).
Because mercury blocks the degradation pathway of catecholamines, epinephrine excess causes hyperhidrosis (profuse sweating), tachycardia (persistently faster-than-normal heart beat), mercurial ptyalism (hypersalivation) and hypertension (high blood pressure). Mercury is thought to inactivate S-adenosyl-methionine, which is necessary for catecholamine catabolism by catechol-o-methyl transferase.
Affected children may show red cheeks and nose, erythematous lips (red lips), loss of hair, teeth, and nails, transient rashes, hypotonia (muscle weakness), and photophobia. Other symptoms may include kidney disfunction (e.g. Fanconi syndrome) or neuropsychiatric symptoms (emotional lability, memory impairment, insomnia).
Thus, the clinical presentation may resemble pheochromocytoma or Kawasaki disease.
First, let's compare this to the signs of autism in a child:
- Lack of interest in toys
- Spinning objects
- Placing objects in lines
- Content with being alone
- Flapping hands
- Excitement in unusual situations or with different objects
- Lack of affection
- Appear not to be aware of surroundings
- Does not respond to their name
- Unusual sleeping patterns
- Show distress for unexplained reasons
- If verbal, repetitive language (echolalia)
- Resisting change in routine (driving a different way home)
- Displaying outbursts
- Sensitive to textures (clothing, food, etc.)
- Show prolonged interest in one object
Now, the clincher: Most Vaccines have not contained any form of mercury since 2007.
You can go here to see the chart. That link also explains the difference between mercury, ethylmercury and methlymercury. If you are concerned about vaccines, PLEASE read it.
Studies that show vaccines are NOT linked to autism:
HERE
Autism Epidemic:
These psuedo-scientists claim that we are having an autism epidemic.
An epidemic is:
In epidemiology, an epidemic (from Greek epi- upon + demos people) occurs when new cases of a certain disease occur in a given human population, during a given period, substantially exceed what is "expected," based on recent experience (the number of new cases in the population during a specified period of time is called the "incidence rate"). (An epizootic is the analogous circumstance within an animal population.) In recent usages, the disease is not required to be communicable; examples include cancer or heart disease.
Yes the numbers of persons being diagnosed with autism has risen.
As per WIki:
The epidemiology of autism is the study of factors affecting autism spectrum disorders (ASD). Most recent reviews of epidemiology estimate a prevalence of one to two cases per 1,000 people for autism, and about six per 1,000 for ASD;[1] because of inadequate data, these numbers may underestimate ASD's true prevalence.[2] ASD averages a 4.3:1 male-to-female ratio. The number of children known to have autism has increased dramatically since the 1980s, at least partly due to changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved,[1] and as-yet-unidentified contributing environmental risk factors cannot be ruled out.[3] The risk of autism is associated with several prenatal and perinatal factors, including advanced parental age and low birth weight.[4] ASD is associated with several genetic disorders[5] and with epilepsy,[6] and autism is associated with mental retardation.[7]
See Full page HERE
Age of Autism and Generation Rescue followers counter this information with comments such as:
"Then where are all the autistic adults?" and "When I was in school there were no children with autism!"
Lets look at these comments and pretend they are reasonable.
Many autistic adults are not independent. They live with family, or in group homes for the disabled, or in institutions etc. Of the autistic adults that are high functioning and independent, they are integrated successfully into society. Some are famous, some are not. Many of the autistic adults that are independent have become somewhat asymptomatic. That is to say, they have learned what behaviors are unnexpected, they have learned to make small talk, conversational turn taking. They 'stim' less than they did as children. I encourage you to research this! The wiki has numerous pages explaining autism, you can search amazon and see the autistic authors, search news and court cases for mention of autistic adults, and search your phone book for outreach and support programs for adults with autism.
As to the lack of children in school with autism 20 + years ago...
Children with disabilities, particularly developmental disabilities were not, as a general rule, in the public schools.
The laws have changed. In North America schools are required by law to provide an education to those with special needs.
Previously, these children, if they attended public school, were in the 'special' classroom. More likely, they were in private schools for children with disabilities, or at home and/or institutionalized.
Bees!!
Sharing the humor
Firstly, I am allergic to bees. I am terrified of bees. You need to understand this before reading further.
Last summer little man spent a great deal of time outside, fascinated with his bugcatcher (plastic home for bugs, includes a net and magnifying glass) and his buglopedia (His teacher put this together for him, it has pictures and scientific facts about insects available in our area.)
I was thrilled to see him doing something that didnt require hours of sitting indoors. This continued for a couple of weeks, then suddenly he was spending tons of time locked in his room. He was also demanding that his privacy be respected, and as such was closing his door and made a sign with a picture of the door being open and an X through the picture. (He had to explain the picture to me, lol, but neat, right?)
Then, I;m doing dishes and he starts SCREAMING "NOOOOO NOOOOOOOOO. This is INCORRECT and CANNOT be happening to my SWEEET SELF NO NONONONONONOOOOOO!'
Startled, although smiling over his choice of words I head to his room. I knock on the door.
"PRIVACY" He yells.
"Um, honey? It's mom, please let me in." I reasoned.
"FINE! It's on your own head then!" he yells back.
I walk in.
I stop.
I can't breath.
I'm trying to not freak.
I'm warring between running away screaming and bursting into tears.
He looks at me oh so calmly and says, "Dont worry Mom. I know you are agic to bees. In my book it says the agicness comes from the stinger, so I removed all the stingers.
He is sitting there with a bunch of GIGANTIC teddybear bumble bees (You know those huge fuzzy ones) and has removed the stinger (and thus killed the bee, which led to a freakout) from one. Another is crawling around the floor unhappily.
I take a breath.
I tell his little holiness that ALL bees are to be put back outside, this very instant.
Saddned he does as he is bid.
Later, when he is ready to discus it he told me he loves the bees, but knew that keeping some as pets when I am agic to them is not accpetable, so he figured if he removed their stingers that he could keep them.
Lord love us, lol.
Amazed that he had caught so many without being stung. truly amazed.
Humor
Random humor
To my mother (She was looking quite rough)
"Grandma! I thought you were great grandma as you are looking quite old today. Do people get old that fast?"
To my 'brother'
"Did you know unca, that you are incredible fat? Obesity is the quite rampant in our country and appears to be linked to diabetes"
to me
"You would be quite pretty if it werent for you pimple and your old face and your large breasts"
'thanks kiddo' laughing
"How do you do things?"
'hmm? what do you mean. Use different words so I can understand'
"How do you do things that need you to bend?"
'what do you mean? I just bend if I need to?' (confused)
"How do you do things that need you to bend, with large breasts to bring your balance to zero?"
'With practice. Remember that mentioning body parts that are covered by clothing is not polite"(trying not to laugh)
"Polite is manners. Manners are often also lies. One does not lie to a mom."
(oh !)
To his step dad (upon having stolen the chair, and remote while stepdad used the washroom. Stepdad returns, laughs and says-'give me back my chair and the remote please'
"I will not"
'excuse me?'
"I will not. I have decided to educate your mind with some exposure to spongebob"
LOL~~
To me concerning a battle about the lack of yogurt tubes in the house:
"I want a yogurt tube"
'You will have to get over that, hon. There are none'
"I want a yogurt tube, please"
'I do not have a yogurt tube to give you. What is your second choice?'
"I want a yogurt tube, please, frozen or not, cherry or not."
'We do not have yogurt tubes, frozen or not, cherry or not.'
"I want one. You must have one" (working up to a fit)
'Are you sure this is about yogurt tubes? You are getting quite upset.'
"ITS ALWAYS ABOUT THE YOGURT TUBES!!" he yells. "ALL of it!! Yogurt tubes, frozen or not, cherry or not, it is ALL ABOUT THE TUBES!" (melt down)
To me about his sister, concerning flatuance:
"Oh I know, my sister is quite gassy. She farts all the time!"
To a clerk at the grocery store. (after she gave him a sticker)
"Thank you. I would add ma'am or sir but your clothes could be for a boy or girl, your hair could be for a boy or girl....and I am way too polite to check for breasts"
(She thanked him for being way to polite to check for breasts, lol)
To his teacher:
"Excuse me, you are in my personal space. I know this as I can smell your lunch"
To his doctor:
"Are you quite certain you are certified? Can you tell me how the circulatory system works?"
The barber incident:
Firstly, my son is fascinated with the respiratory system and teh circulatory system. He sat in the chair, and proceded to quote his entire textbook on blood flow and platelettes etc to the barber.
This speech was interrupted with random comments
"What is that blue liquid you placed the comb into?"
'Barbacide'
"HA! That's quite funny. That's almost a pun, do you understand why it is funny?"
'hmmm, why dont you tell me'
"Because!!! You are a barber, and you put your combs in BARBERCIDE!!! HAHAHAHA'
(more babble about the circulatory system)
"Would you like to know another funny thing?"
'Sure'
"You are a barber, and you are bald!!"
'Bored?' (Not understanding with the speech imperfections)
"no hair!! Bald. I am certain this does not mean bored."
(more science babble)
Barber interrupts
'Do you get your love of science from your Dad?' (Nods towards my husband)
"That is not my Dad. That is my step father. He is like a Dad but Different. I am certain one does not 'get' things like this from a step dad. Although he does give me presents sometimes. And lectures."
'Do you get your love of science from your Biological Dad?'
"What is a biological Dad?"
'Um, that is the Dad you came from'
(shoots a look of contempt at the barber)
"Babies do not come from Dads. They come from mommy's. Did you not know this?"
'Uh, the dad that helped make you...'(flustered)
"How does a dad help make a baby? Do YOU know? I know a baby grows inside a mommy but not how the Dad helps with this."
'ummm' (way past flustered, with myself and my husband laughing hysterically.)
Funniest hour of my life. Truly.
Hugs and laughter
House Hippos
House Hippos- understanding Fiction does not equal truth
Does anyone remember the advertisement on television about 'house hippos'?
The advert runs as if you are watching the discovery channel, expounding on the habitat and behaviours of a tiny hippo that lives in your home. The purpose was to inform 'children' that not everything you see on TV is true.
The first time I saw this advert I was astounded. I admit, for a second I was filled with childish glee at the possibility of such a thing existing even as I questioned it.
I think many adults out there could learn a valuable lesson from this commercial. In an era where it seems as if there are mass believers in many unusual trends (that was very polite, wasn't it?) I find myself wondering how many adults believe in house hippos?
Alternative religions where one believes in spirit guides and pre-birth contracts, alternative medicine where we are desperate to cleanse our colons, boost our immune systems and treat our often undiagnosed symptoms with chelation, vitamins etc and alternative beliefs in anything that is unproven, faith based and emotionally driven are rampant in our North American culture.
This is not truly a new thing. There have always been people who believe in the paranormal etc and disbelieve in science. What is new is that these beliefs are now common. Test me on this, search 'alternative science' or 'alternative medicine' and see how many official looking websites you can find. Better yet, speak to your doctor about working alongside an 'alternative' practitioner. Many doctors will actually agree these days. Check this out for more along these lines
People use the word 'aura' and talk about 'energy' as if this is publicly accepted by all. They discuss their 'past lives' and the lessons they are claiming they need to learn in 'this' life.
If it harms no one, I feel you should be free to believe what you want. But when these beliefs begin to endanger others, when fads become 'facts' we, as a society, have to take a harder look at the line between freedom of choice and stupidity that causes harm.
I am a great believer in having choices. However, when the general populace has demonstrated an inability to use some sense, rules must be made to protect those affected by their choices.
I am in particular referring to those persons who follow the fad pseudoscience and quackery in 'treating' their children.
When our desire to have the 'freedom' to choose endangers our nations children, surely we must take steps, encourage new laws and allow for some restrictions to be made.
The latest US craze to treat children with autism by giving them Lupron injections is ludicrous. The clinics offering this treatment are often run by persons whom are NOT medically trained or certified. The injections themselves are reported to be a dosage that is much higher than recommended by the FDA and by the drug manufacturer (The latter does not approve or endorse their product being used to treat Austism).
Where are the laws to arrest Dr. Geier and his son for making false medical claims, providing unsafe treatments to children and setting up clinics that are being run by persons without medical certification?
Where are the laws with which to charge parents with abuse for allowing potentially dangerous treatments to be given to their children (in effect, to be permitting mad doctors to perform experimental treatment on these children).
In my opinion, a fad becomes a danger when it is used to promote products to be used on children that are untested, not regulated by the medical community and not backed by science.
Discovering Imagination
Discovering Imagination
This is mommy talk, not science talk, though of course if you have any data or studies along this line, I'd be happy to see them.
One of the things I have noticed the most over the years that distinguishes my son from the typical child, is NOT the lack of eye contact or social interaction.
It's his lack of imagination.
Toys don't talk to each other in play. I never used to hear 'what if' or even the words 'pretend'.
His world was filled with strict literal meanings, analytical play, memorizing facts and details. He can recite the stats off every Yugioh card, he knows all the rules, (in order) in his player's handbook. He can tell you, step by step how to win at chess. He can list the parts of a steam train, and electric train and how they work, who invented what and where. He can recite nearly every resource he has read on trains (and believe me, there are many resources. This was a five year long obsession that thankfully has toned down to a mere hobby). He can explain to you how your circulatory system works, or your respiratory system.
He uses an adult vocabulary with a preschool diction (speech trouble, due in part to delayed development). He can list the different definitions for any word that has taken his interest. He knows the rules to baseball, basketball and badminton. While playing a sport he calls every penalty/foul or w/e, even if it's against himself or his teammates. Interestingly enough, although he struggles to speak correctly in English, he loves learning French. He recites the grammar rules and translations happily.
The world, for him, has been sorted into as many categories as he can find, distinguished by factual characteristics.
Then something amazing happened. Something wondrous.
My husband got it into his head to make this game for the family to play. He took the 3D aspect of warhammer and changed the rules. He wrote the rules for each 'job' a 'character' could have. He created a 60 page rule book.
We sat down with the kids, with a few warhammer figurines, and went through the rule book.
In this game (our kids call it 'the game') you get a figurine to represent your character. You roll dice to determine if you move around on the board (three card tables pushed together with homemade scenery, much like a diorama you see train fanatics use) or if you battle a 'monster'. It is a dice roll controlled game involving lots of math. This game has magic, dragons, hero's and villains. But more importantly, it has RULES (my son loves rules). It requires that the children WRITE information on their character sheet, do the math to track their characters abilities and life(hitpoints). We played regularly over winter (it goes to minus 40 here over the winter).
The kids decided they wanted cooler scenery for the 'game board'. I bought some hirst arts molds (www.hirstarts.com) and we made castles and bridges all to scale. We scoured the INTERNET for instructions on making cool trees, rivers and lakes. AND... AND... my son, who can barely hold a fork and HATES crafting, discovered a love of castles and building.
He designs his own, builds them and paints them. He still gets agitated over getting his hands messy but once he cleans up he gets right back to it. Then he decided to paint his own warhammer figurine. (These are DIFFICULT, lots of tiny parts to paint with a toothpick.) Then he became fascinated with dragons. And all things to do with Medieval times.
He began to write (with horrible printing and spelling) some amazing stories about heroes, dragons, castles, wizards. He began to read fiction books not just encyclopedias. He began to draw. I watched as a whole new world opened for him. Don't get me wrong, this was as trying as it was exciting. He had trouble distinguishing pretend from real.
We had many a discussion on how some things are just for fun and not real. That not all books are facts and how to sort through them. At first, he had difficulty, but soon it 'clicked' for him. (with reminders still needed now and again, lol)
Now, he sets up his army guys (those little plastic army's) and instead of re-enacting historic battles he has a dragon (lego i think) that attacks them. They talk to each other. Sometimes they make friends with the dragon. More often the dragon defeats them.
I watch this imagination helping him with some small aspects of socializing. It's all hindsight right now (that is to say after an incident when we are discussing it and I ask him to pretend he is the other child, and tell me what happened from that child's point of view. Sometimes (not often, but still!) he CAN). At the very least, it is a beginning.
He is still very literal (although he is trying for pun humour these days. Not always successful, but still growth is growth). He still clings to data and lists the way some children do a favourite blanket. But so many difficult times and feelings can be helped with imagination. I am so excited to see him enter the world of what if and find a love for creativity.
Sometimes parenting is more than merely rewarding. It is uplifting and inspiring. I love watching his unique way of taking in information and applying it in such unexpected ways.
The heart of a child is an incredible thing.
The path I'm on
The path I'm on
It's been over a decade of travelling this road; researching in the library, scouring online for answers, pestering the doctor's and specialists, meetings with therapists and dealing with family members that could not be supportive.
This road, I know, has been travelled by many a parent. There are an incredible amount of blogs and forums and websites to attest to the joys and struggles of parenting children. There are even a tremendous amount of the same concerning parenting a child on the autism spectrum.
Sadly though, there are many websites talking about the tragedy of it all, the grief and hardship. There are not enough people, in my opinion, sharing the joys, the victories and the love involved in parenting an autistic child.
So while, yes, I am going to rant and rave about the ignorance of others, the struggle to find professionals willing to diagnose and recommend skills training and the worry one has as a parent-I am more going to focus on all those mommy moments.
I don't welcome any responses that offer me 'cures', although resource links are ALWAYS appreciated. I don't want sympathy as I do not feel that my child is a trial to me and I am not living a tragic life.
Hugs and Laughter,
Angela
My story
My Story-laughter and worry
I have three children. My youngest has been recently diagnosed with PDD-NOS, which as I understand it means he is autistic, but not autistic enough for the other 'labels'. This post deals only with the landmarks of getting a diagnosis.
I started seeking answers, when my son was just over three years of age. He was nonverbal, obsessed with trains, somewhat antisocial (except, interestingly enough with his sister whom is one year older than he) and displayed some unique personality traits.
In hindsight I see how I phrased my concerns incorrectly for the professionals I dealt with. I can also see how, unless you spend a great deal of time with him, you would not see what I was seeing. He is high functioning (I resent that term, btw, as it implies that those with stronger markers on the spectrum are at the bottom of some scale).
My doctor explained that some boys develop some skills slower, that as the youngest he may not feel the need to communicate (two siblings to pander to him and ask for him). He also told me (as if it would be NEW information to me) that each child grows at his/her own rate.
Discouraged, doubting myself and eating the 'I told you so"s I stopped chasing answers from the professionals. Instead I spent more and more energy working on one skill at a time.
I targeted one thing at a time, literally. And I worked on that one thing until I saw improvement. Then I picked another.
One of my favorite moments in parenting him as a pre-schooler is potty training.
My son would not potty train. He could care less if he was wet. He was too busy with his trains to bother with it. Encouragement did not reach him, sticker charts were ignored. I even resorted to bribery! I scoured the library and the Internet for tips on potty training. (Keep in mind, I am the oldest of four children, this child is the youngest of three children-it is not like I did not have any experience myself yet nothing worked.)
Then I discovered something amazing. Printable Iron On's! I created page after page of Thomas the Tank Engine iron ons. I then ironed them onto EVERY pair of underwear he owned. I also made a wonderful T-shirt with Thomas the tank going into a tunnel on the front, and coming out of the tunnel on the back.
I pointed out to my seemingly uninterested child that Thomas was on his underwear. I showed him the Shirt. I told him that if he learned to use the toilet I would GIVE him the shirt. I also told him (smiling) that Thomas did not like to get wet. I showed him the toilet and the seat for kids. I told him he could come get me and I would help him set up the toilet.
The whole time he was doing that blank look. He did not respond in anyway. Disheartened I left him at his train table and threw on the laundry.
I was still sorting out socks from the dryer when I hear the toilet flush. Surprised (the other children were at school and pre-school, so we were alone) I went to investigate.
My son was standing in the bathroom, pants off, underwear in his hand, feeling his underwear carefully. (I think he was making sure Thomas was dry!). He looked at me and held out his hand. (he would hold out his hand if he wanted something) I cheered "Yeah! you did it!!! awesome job!!" He grunted at me and held out his hand again.
I asked if he wanted a treat, he started to fidget (Usually, for him, a sign of being agitated. Fidgeting preceded many a meltdown) A drink? A snack? A Hug? (more fidgeting). He stomped over to where I had put the shirt, stared at it, then looked RIGHT at ME and held out his hand.
I was floored. I gave him the shirt, helped him to put it on (and his underpants and pants). He wandered off to play with his trains and left me standing there. It was the FIRST time he had demonstrated that he understood when I babbled at him. It was the first time I realized that it wasn't about what he 'could not' do, but more about what he 'could be motivated' to do. I cried. I giggled. It was one of those wow moments.
(At nearly 11 years of age he still wets his bed quite regularly. But he has not had an 'accident' during waking hours since the 'Thomas' day.)
This was a turning point for us. From that point I talked to him with the assumption that yes, he did hear me. That yes, he does understand. I don't push him to answer me although I do pause to give him time to respond.
Over the years, until his fascination moved to things other than trains, I utilized Thomas the Tank rewards to motivate him for many things.
Anyways, the summer before he was to enrol in kindergarten was the next time I took the plunge to find some answers. My son was using some words, but still not talking with phrases. He was seen by a wonderful lady at our Child Development Centre. She recommended that I place him in the preschool program over summer. (We felt that perhaps without his safety net of siblings and mom to guess at everything he might decided to speak some more. I agreed, thinking that at worse it will give me an idea of how he would do in a school setting).
Surprisingly he seemed to enjoy preschool. He did learn some small phrases although he tended to choose verbal communicating. He would not participate in singing or talking activities (ABC'S etc) but he did enjoy exploring this new environment.
School, however was a different story. I ended having to attend with him as his meltdowns were more frequent. Where the preschool allowed him to wander to a different station when he felt like it, in Kindergarten he was required to be with the class. He did start to talk some, but no one but myself and his sister seemed to be able to understand him. The school started him with speech therapy. (I loved this girl! She used trains and Thomas to motivate him, never talked down to him. His speech dramatically improved over the years, due both to his own development and to his speech therapist.
In grade one, his class had another child in it who was diagnosed with Asperger's. My son gravitated towards him. The teacher, with my permission, put my son on a wait list for a psych-ed assessment. In the mean time, the aid for this other child included my child in their skills training. (with of course, permission from the other child's parent.)
My son was struggling with the reading and writing part of the curriculum. The school placed him in the 'reading recovery program'. His sight words were phenomenal, but the mechanics of reading seemed to be stumping him.
There were less meltdowns at school and as such I was only in class with him twice a week. He had learned to participate in class activities, but screamed if they sang or played music. His vocabular at this point included words like 'pontificate, validation, experimental, inconclusive' yet he was unable to make r's, s's f's th's in the appropriate placement. The school tested his hearing again. Interestingly, with the part of the test where they check what range of sounds he can hear, he scored exceptionally high for pitches both higher than typical range, and lower than typical range.
The psych-ed determined that there 'is some sort of learning disability' and while he 'demonstrated many autistic makers' his overall scoring did 'not indicate enough evidence to be diagnosed with autism'. Their recommendations were to reassess in a couple of years, provide reading recovery and skills training.
Until this year, when my son asked me 'Are you aware that I am quite different from other kids in my class?' and told me that 'I don't particularly understand why my friends do some things and say some things' and later asked 'Am I retarded?' I was excited and worried. Excited because he was NOTICING things socially. Worried because I am not qualified, imho, to teach social skills. Not to a child who is literal to extremes and does not take information from one scenario and apply it to another.
So again, off to find some help. I had the speech therapist provide a complete assessment, including pragmatics.
With this assessment in hand I went back to the CDC, to the CLBC (community living) and the ministry of children and education. He is now enrolled in a pilot program that uses social scripting (based on winner's program) and is doing well. He also works with a behaviour interventionist once per week on conversation skills, social interactions etc. He has since received the diagnosis of PDD-NOS as well as pragmatic disorder.
OH! and last year he was diagnosed with dyslexia, and we started the Barton reading and writing program. He is currently minimal meeting expectations for writing and reading. With a modified language arts mark he is on the honour roll which thrilled him to pieces.
Hugs and Laughter
I know I have included very little personal stories about my son in this post. This was more a background.
Tradegy? w/e not in this house!
Tragedy? w/e not in this house.
Excuse me? Someone forgot to tell me that is is a burden to me! That I should whine and cry about how close to utter despair I am. bleh.
I don't FEEL sad, or devastated. My son is not a 'ghost' or a 'shadow' nor is his 'lost'. I raise him with much the same outlook I have been raising my non spectrum children.
When my oldest struggled with Science, I found tools to help him. I researched the subjects he was learning. I became an somewhat expert at his grade level scientific terms. I found after school help. I used all kinds of techniques to inspire him, from sticker charts to rewards. When as a toddler he would runaway, regardless of the danger, I discussed, taught and prevented, by whatever means necessary. (Yes, I DID use that halter and lead with him in public. No I DON'T feel it shamed him. What it did do was prevent him from running into traffic. Safety first please!) When he started 'dating' and was a doofus to his girlfriend I again used every tool I could find to teach him better male-female relationship skills.
When my daughter demonstrated a natural talent for music, I found her cheap instruments, a karaoke machine, got her lessons. I learned more about music than I even knew was out there. I encouraged. When she developed a habit of bullying her pals I again researched, became a somewhat expert and found tools to teach her. I set consequences and rewards.
With my youngest I do the same things. I research, I find tools, I encourage, I set consequences. I find the tools he needs and I find ways to teach that are appropriate for him
With all of my children my goal is to work myself out of a job. To provide the tools they need to grow to be independent and happy. To nurture their strengths and strengthen their weaknesses. To love them, accept them and enjoy them.
They are each unique. With every child I have ever cared for there have been vast differences between their needs and responses. No one parenting rule has ever worked with all of them. Why is it so startling to some people that the same is true with a child on the spectrum? How is doing the same things I do for the others, but because he is autistic, make my life harder? or a tragedy?
Do these parents ever have joy of their children?
Ever giggle hysterically at the literal translations of our very sarcastic based society?
Accept the love their child gives in their unique way?
Take joy in their successes?
At the end of the day, my heart is full. Like any mother I worry about my children-but they fill my heart. I am so very proud of all of them.
Tragedy? What is truly tragic is our (people as a whole) desire to force others to conform. Our inability to be comfortable with differences. Our lack of self responsibility. (I don't really care WHY he is the way he is. I care how to raise him to maximize his potential and support his endeavors.)
So no, I do not feel cheated. I have three happy, dynamic children. What more can a mommy ask for?
Hugs and Laughter