Some Things Are Unacceptable

7 06 2013

Yesterday I had the opportunity to meet two young teens with autism and their parents. Both boys were very friendly, engaging, funny! But…

Although both of these young men are more verbal than my son and both have better coordination, they are both are allowed to use autism as an out. Their families make excuses for them and accept things that society finds unacceptable.

One of these teens has hygiene issues. His grandmother, who he lives with, is frustrated and wants him to bathe, brush his teeth, stop picking at his pimples… but, “he has sensory issues” so he “can’t”.

The other teen interrupts constantly, is physically aggressive (because he doesn’t know his strength not because he’s mean or an intentional bully)… but, he has autism and “can’t control it”.

Disclaimer: I am just a mom. Every child with autism is an individual. I’m telling you what works for us– not making recommendations for your kid.

There is no “can’t”. There are accommodations, modifications. There is creativity and patience. Whether we like it or not, people with autism have to live in a world that is uncomfortable and unforgiving.

hygiene: Sensory issues do make it difficult… how do you get a child who gags when a toothbrush is put in their mouth, to brush his teeth? How do you get a kid who has poor self-control to not interrupt? We’ve done it slowly, consistently and creatively.

J used to gag with a regular toothbrush– so we used the baby toothpaste and brush for years (you know the kind– they’re usually blue, soft rubber bristles, fits over your finger like the finger of a glove). When he discovered Sponge Bob (around age 7-8) he made the switch to a little kid Sponge Bob toothbrush and toothpaste. Finally, at age 13 (when being a teenager was a big deal to him) he switched to a tween toothbrush and matching toothpaste– mild mint.  We used his interests and peer pressure to get it done. It’s taken 13 years– but he’s done it!

We’re still not “done.” J hates falling water so showers are out of the question for now– but, baths aren’t. Puberty is already here and swim team is coming this fall so he’s going to have to learn to take a shower this summer.

Lotion, ointment etc. don’t feel good to him– but, girls don’t like zits… and Stridex isn’t a cream. We’re still working on deodorant… haven’t found the right smell yet but we’re working on it. He doesn’t consistently use shampoo but we have an ongoing deal that he can keep his hair long if he keeps it clean so the threat of a haircut usually gets it done. He chooses the lesser of two evils.

Manners: This has always been a big deal in our home. We stress treating people the way we want others to treat us, we say please and thank you. We ask rather than demand. We do not interrupt.

When J was younger we used to stop the conversation and teach him the right way to get attention (“excuse me”, wait to be addressed, ask your question or make your comment) and praise him before returning to the conversation. From there, we would just say “manners” and continue our conversation until he did it appropriately and now, the raised eyebrows do the trick. It’s not a mastered skill but the frequency of interruption is so reduced that it’s not an issue anymore. Please is required to get what he wants. Thank you is required before moving on.

These skills will keep him out of trouble. Polite people do get what they need more often than the rude or demanding. It helps us value others and shows respect for them. Teachers, therapists, secretaries,  cashiers, lifeguards and peers respond much better to polite people. Having good manners helps people forgive the bad days as out of character rather than something  that is punishment-worthy.

I know I’m oversimplifying things here. But, the mentality of “can’t” because of autism is what dooms kids with autism to a life without reaching their own maximum potential. Life can be very uncomfortable for those with– or without autism– but, if we use it as an excuse, if we let our kids accept that they “can’t” then they won’t… And, that’s unacceptable!

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Social Advocacy: Giving my son a voice

23 05 2010

Parents of children with exceptionalities (aka disabilities) see things that parents of the “normal” kids don’t notice –the volume of a movie, the ceiling fan, the florescent light that strobes,  the teacher who only explains verbally… We can complain– or we can educate.

Business owners, neighbors, family, friends, teachers don’t mean any harm (generally speaking) — they just don’t know any better. It’s important for us to educate these folks so that change happens.

I never complain without offering to help solve the problem– If I offer to train their staff at no cost and they don’t take me up on it they don’t have an excuse… and I have more leverage if I need to lodge another complaint.

There is no silver bullet… and unfortunately, education hasn’t always worked for me… I confess that I have filled complaints with the ADA when education has failed but it’s always been last resort.

Remember to be polite, know your facts, ask questions, be persistent and make change!





Ten Things Every Child With Autism Wishes You Knew: Part 4; Literal Thinker

19 01 2008

This is the fourth part of of my series from the book I just finished reading. It’s Ten Things Every Child With Autism Wishes You Knew  by  Ellen Notbohm. The following is from the article by the same name:

I am a concrete thinker.  This means I interpret language very literally.  It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.”  Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.”  When you say “It’s pouring cats and dogs,” I see pets coming out of a pitcher.  Please just tell me “It’s raining very hard.”

 Idioms, puns, nuances, double entendres and sarcasm are lost on me. This has been a real stumper for me– and for my parents.  Having grown up overseas, I don’t use a lot of slang in English but, I do joke around a lot. J is into Pirates these days– specifically; The Pirates Who Don’t do Anything.  He’s a little actor, and his primary method of communication is Echolalia– so, when he’s quoting the movie in the voice of Sedgewick, it’s pretty natural for me to call him Sedgewick– he corrects me every-time: “I’m not Sedgewick; I’m J.” His language is literal. It’s important to say what you mean– precisely what you mean. It doesn’t rain cats and dogs; it rains really hard. He isn’t my “Honey Bunny”; He is my favorite guy ever.  He dog isn’t “acting up”; He’s being naughty.

When I realized that J didn’t understand my tone of voice it was a major adjustment for me and I started announcing when I was asking a question.  It’s my habit to get his attention– “Question” (In the inflection of a question– if he doesn’t look at me I tell him to look at me) “J do you want to go to the store with me?” This has been so helpful for us.  He knows when I ask a question– he has to respond and he does.

This is important: When giving instructions you have to be specific. Seriously– this will reduce the number of meltdowns, get results faster and correctly.  Don’t tell him to clean up the mess– tell him to put his toys in his toy box and the dirty clothes to the laundry.

J doesn’t get jokes. The Three Stooges are Funny (physical humor) but “Knock, Knock Jokes” (play on words– an orange is an orange– not “orange you glad I didn’t say banana again..” ) aren’t funny.  He knows that he gets a positive response from telling a joke and so he does it.  His jokes are memorized and have the same inflection as the person/movie/cartoon that taught it to him.  A few nights ago we had dinner with my mom in the nursing home where she is having therapy after hip replacement– Part way through dinner there was a short lull in conversation and J told his best joke; “What lies at the bottom of the ocean and shakes?” (He pauses appropriately, waits for a response.) “A Nervous wreck.”  Everybody laughed– even some of the people at the next table.  So, he told it again, and again…  He didn’t think it was funny but laughed along with everybody else because that’s what he was supposed to do. (NEVER discourage your child from experimenting with social conversation– if he falls into a loop; Help him get out of it. If he uses inappropriate language; steer him toward appropriate language. Do not reprimand your child for trying to participate in the social situation. More about Social Interaction in Part 8.)

Keep promises. Your child needs to be able to believe what you tell him– literally. If you say you are leaving in five minutes: Leave in five minutes.  I’ve quit giving a time-frame because it’s just too hard to keep in a social situation; instead, I tell J what has to be done before we can go. “I need to finish helping grandma with the dishes. When I am done we can go.” Or; “Pack up your toys, Get your coat and give everybody hugs and kisses then we will go” I always make sure he is looking at me when I tell him what needs to be done and, I always keep my promises.

I really do recommend reading this book– it’s been so helpful for us– No meltdowns this week!





Autism is my Giant

14 01 2008

Our minister is doing a series of sermons on Heroes of the Bible… you expect the usual– Daniel, Saul (Paul), Esther, Abraham, Moses… But who is Caleb? I’m the daughter of missionaries– was there whenever the Church doors were open… and I really couldn’t remember this guy…

Caleb was Joshua’s sidekick. (You know the wall of Jericho– Joshua and the trumpets the wall came tumbling down…) Anyway, Caleb was a good guy.  He was sent into the Promised Land with Joshua (and several others) to check it out before they went in.  Caleb came back and told the people of Israel that it was amazing! “We gotta go there! Sure, there are some giants but we can take ’em!” To make a long story short– God approved of Caleb’s report and promised him the land they had seen.  45 years later– by now Caleb was 85– Caleb goes to Joshua and says it’s time. “I’m ready to go fight the giants and take possession of the land God promised me.” (Obviously this is paraphrased…)

Forgive me if I have taken too many liberties with the script but, each of us has a giant… be it an unhappy marriage, money issues, childhood pain– or Autism.

Autism is my giant. I love it and hate it. I love who it has made my son and I hate that it penetrates every area of my life… I hate that it makes simple (simple for me) things so difficult for my son. I hate that when it’s time to go– it’s time to go.  The red shirt goes with the white vest. All food is white and language is difficult… I hate that my son can’t tell me what he wants to be when he grows up… 

I’m really conflicted about wanting it to go away because in some way it makes me feel like I don’t love J the way he is– but I do! I don’t want him to be somebody else– I just want it to be easier for him– and, when I’m being painfully honest; easier for me…

So, Autism is my giant– and, here I am ready to battle it! I can take it on!





Hey! Candidates– watch this before you finalize your healthcare plans!

12 01 2008

http://www.whatkindofworlddoyouwant.com/videos/view/id/408214





Ten Things Every Child With Autism Wishes You Knew- Part 2; My Sensory Perceptions Are Disordered

12 01 2008

Here is part two of a ten part series from the new book I’m reading: Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. The following is an excerpt from the article by the same name:

My sensory perceptions are disordered.  This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me.  The very environment in which I have to live often seems hostile.  I may appear withdrawn or belligerent to you but I am really just trying to defend myself.  Here is why a “simple” trip to the grocery store may be hell for me:

My hearing may be hyper-acute.  Dozens of people are talking at once.  The loud speaker booms today’s special.  Muzak whines from the sound system.  Cash registers beep and cough, a coffee grinder is chugging.  The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums.  My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive.  The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out; I’m too nauseous.

 Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated.  The fluorescent light is too bright; it makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing.  There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion.  All this affects my vestibular sense, and now I can’t even tell where my body is in space. In the book she talks about feeling like you’re always on a roller coaster– fun for three minutes but can you imagine going through your daily routine on a roller coaster? Making coffee alone would be enough to ruin your day…

In light of Sensory Disintegration– I am so proud of my J! He handles the off-kilter-ness of his world so well!  I’d be hideous!!  (And, my husband who moans for hours over a hangnail… yikes! What would he be like?) So, J’s outbursts aren’t rebellion, manipulation or bratty-ness– they are genuine cries for help– “Get me out of here”, “End my suffering!”

There are lots of different manifestations– Hyper-sensitive (Clothes hurt, the washing machine is too loud, the light is too bright…) and Hypo-sensitive (Yearns for deep pressure, louder, brighter, harder). J is Hypo-sensitive. He likes walking barefoot in gravel and loves to wrestle. He also is a recovering headbanger.  Identify what your child is– and work with it…

I believe that J will be a productive part of society and this book– the information in it– is a stepping stone. I highly recommend it to all who live with Autism– parents, teachers, grandparents, ministers, Sunday school teachers, lifeguards at the Y… It is up to us– the guardian’s of these kids to provide the people in their lives with this information.

An article by the same name is available on-line.





Hillary Clinton Promised to Find Out What Causes Autism

8 01 2008

A couple of nights ago I had CSPAN on while drifting to sleep and a Clinton Speech in New Hampshire came on. She brought up Autism– without being asked anything about it– and promised to find out what causes it. Was I dreaming?

Can she make that promise while endorsing mandatory vaccines? Seems a bit contradictory since vaccines (Thimerasol) seem to be the most likely cause. (At least Ron Paul’s health-care plan gives us a choice on vaccinations… ) There are certainly other theories– older father, environmental causes, and heredity are just some of them. Another theory for the explosion in autism diagnosis is the expansion of the definition. In past generations, people who were high functioning might have just been considered eccentric.

I don’t have any answers and,  apart from living with an autistic child and reading everything Temple Grandin writes, I have no expertise.

While I applaud Mrs. Clinton’s ambitious promise to find out what causes Autism, I’m skeptical that she can actually do it.  And, if it matters so much to her why hasn’t she done anything as a member of Congress?Don’t they hold the purse strings?

Any politician would be fool to claim apathy towards those of us who’s lives are affected by Autism– but, what have any of these folks done? Huckabee got a $400 haircut to benefit Autism Research– big deal. Richardson actually expanded services in New Mexico. What have Edwards, Clinton, Obama, McCain, Romney, Paul, Thompson and rest of the pack done?

Hillary Clinton talks about her track record– accomplishments– what has she done for the “least of these”? Am I missing something? Has she done something that I’ve missed?

I welcome your comments and am an undecided Ohio voter. I do vote and will vote for the person who, in my view, is the strongest on the Economy and on Autism.