Monday, May 10, 2010

Mother's Day

To all of you valiant moms who take on the impossible with steel souls and prevail, who stand as the sole defense against forces too big for you and somehow win, who face disability and disease and still find the ability to inspire laughter in your children,

I wish you smiles, joy, and huge triumphs such as tied shoes and completed homework, full uninterrupted nights of sleep, and random compliments from strangers, melt-down free shopping, and many birthday cakes.

Be blessed today and always.
Heaven salutes you, and so do I!
Happy Mother's Day

Thursday, April 29, 2010

plastic and toxins

Lately I've been considering my dependency on plastics and how that might have contributed to my son's developmental disabilities. This is a hard thing to consider, that our convenience-saturated lifestyle could be poisoning the next generation and subsequent generations to come. Time Magazine this past month of April had a very gripping and convicting look at plastics and other household hazards, and how they are so little regulated.

http://www.time.com/time/specials/packages/article/0,28804,1976909_1976908_1976938,00.html

The EPA can only regulate a chemical if it is proven harmful, whereas the FDA puts teh burden of proof on the pharmaceutical company to prove their product will not be harmful. The burden of proof for harm rests with the EPA, and the chemical manufacturers don't even have to be entirely forthcoming about their own findings.

so, what sort of chemicals can be harmful? Plastic drinking and eating utensils and packaging, shaving cream, cosmetics, carpeting, synthetic fibers, asbestos in toys (yes it is still used--it is not illegal) and in drywall, plastic baggies, wrap, and baby bottles, shampoos, and nearly every type of soap and cleaner. Plastics break down in microwaves, dishwashers, heat, water, scrubbing, etc. And enter our water supply and food. Teflon becomes airborne at high temps and wears off into our cooking. All of these have been linked to either reproductive anomalies or cancer in lab animals, and sometimes to neurological damage.

What can be done? switch to glass as often as possible for drinking, cooking, eating, storage, and use "green" chemicals for cleaning, such as vinegar, baking soda, and even bleach, rather than harsh chemical compounds. Air out your home when possible, and beware of preservatives in your foods. Cook fresh and from scratch as often as possible. Eat natural rather than synthetic, such as butter over margarine. Pray over your food. Mark 16 says you will eat deadly poisons and it shall not affect you. The fact is, no matter how conscientious you are, you can't eliminate all risk.

Tuesday, April 13, 2010

Swim team

My son is participating in the Special Olympics this year. Last year he bowled with his fourth grade team, the year President Obama facetiously belittled Special Olympics bowling. Whether or not that affected his decision, he didn't want to bowl again this year, so we tried the swim team. He has found his niche, let me tell you!

From Kindergarten, we have sent son#2 and daughter to swim lessons. Since they are only fourteen months apart in age, they have always been nearly even in their skills, lessons and grade level. But I gotta say, he has taken off in his swimming. We put up a pool in the back yard four summers ago, and they both really enjoy it, but dd had to overcome a phobia, and is just hitting her swimming stride. ds#2 has perfected his.


Out of thirty or so kids, he's been coming in a consistent third place, and often second in the backstroke. Now I know its not about competition, but it is seriously giving him confidence he didn't have. The other kids who place first and second are much older, taller and stronger, but he keeps up and swims his little heart out. I am so proud of him to finally find something he can do and succeed at. This is the kid who still can't ride a bike at the age of eleven. So to see him involved and thriving is so heartwarming.

His meet is next month, and they are practicing relays, so I am anxious that he remain in the top four so he can participate in that event with his team. Lord knows if he is told he can't, what kind of disappointment that would be. But I have to pray and trust that God knows best, even if its not the news we hope for. Maybe he needs to learn flexibility more than he needs some great sporting event, or to experience the thrill of winning something. God is sovereign.

Saturday, April 3, 2010

Outings with Aspies

This week was a busy week of family trips and activities. It is always an undertaking going out into public places, particularly when crowds are possible. Crowds cause my son to become overstimulated and shut down, or worse. Occasionally, we have to take that risk of crowds and meltdowns, and venture out. Last Sunday was one of those occasions. I took dd and ds#2 to a rock and mineral show. In two rooms, vendors with tables crammed full of fossils, semi-precious gemstones, and various colorful rocks left little room for aisles where the masses of humanity were to squeeze through. It was the perfect set-up for disaster. Thousands of small trays, thousands of choices to spend his ten dollars on, and throngs of people to navigate around. Details of what, where, when, how much, under flourescent lights and tight quarters. . . I took a big risk. But I knew my son would really enjoy seeing all of the crystals and geodes, dinosaur teeth, petrified trees and trilobites.

Turned out that he really did enjoy it. He didn't want to participate in the activities, like simulated panning or polishing a stone at the wheel thingey. But he displayed amazing patience when i asked him to see everything first before deciding what to purchase. That was asking a lot from a kid who can hardly hold it together. But he did. And he remembered exactly what he wanted, how much it cost, and how much change he'd have left over to buy something else. He ended up with a resin mold of an African T-Rex tooth, several fossil shark's teeth, and a nugget of pyrite.
All told, a very successful day.


This weekend, our town held its annual Easter egg hunt at its huge outdoor sport's complex. The weather was beautiful, with mid-seventies unheard of for upstate New York in early April. On one side of the vast acreage, a BMX bike track with motocross hills featured a pack of eager racers. On the other side of the complex--our destination--hundreds, maybe a thousand kids, competed for swings and slides and monkey bars, waiting for their turn to hunt for candy-filled plastic eggs. My son's body went rigid, and he began to grunt under his breath.

I would have guessed that the wide-open spaces of the great outdoors would have been easier on him than a packed room full of minutia, but here he was, proving me wrong with every growl. I diverted him by sending him and his sister back to the car to fetch their jackets while I stood in line to register. Worked like a charm. I was done before they returned, just in time to see if he wanted his face painted. He didn't, but his sister did. his growls turned to guttural yells and one terrific outburst that turned heads. Okay, no hotdogs, either. Maybe a breather at one of the far bleachers where no one could hear him scream while he decompressed. We crossed the field and took a time out.

By and by, he came around. And just in time. They called his grade, and opened the gate to where the pastel colored treasures waited. Though the wait seemed interminably long, he waited like a soldier, and when they hollered go, he was ready.

Two very different events, but in the end, a bag full of goodies, and success. Outings with Aspies just have to be handled with flexibility, an escape route, and perseverance.

Thursday, April 1, 2010

National Autism Awareness Month

April 2 is National Autism Awareness Day, and for all of April, autism gets the spotlight. Blogs, legislation, books, movies, TV shows, and online discussions will take place to raise awareness of this increasingly common spectrum disorder.

Family Life Network, my local Christian radio station, aired an interview today with Dr. Laura Hendrickson, author of Finding your Child's Way on the Autism Spectrum In her book, Dr. Hendrickson discusses her journey to wholeness and healing for her autistic son.

Here is a blurb: "The Bible tells us that God personally designed each of us and has a plan for our lives that is for our good. Autism is not some kind of mistake that happens outside of His sovereign control. Dr. Laura has raised an autism spectrum child, now recovered from autism, to adulthood. She knows both the sorrow of receiving the diagnosis of autism and the joy of watching him grow in his abilities, and in his faith. This book will help you to apply biblical principles to the management of behavior issues, and will also encourage you to look to God in faith that He is doing something good in your life and that of your child."


You can order this book at: http://www.drlaurahendrickson.com/Laura_s_Books.html

I am thankful for the many voices creating awareness. Are you more aware of autism than you were a year ago? I know I am. And I will be wearing blue to honor autism awareness day. Hope you will, too.

Monday, March 22, 2010

new book on Aspergers


I read today that Curt Schilling and his wife Shonda have written a book about their son Grant. Curt, as you may know, is the retired former all-star pitcher for the Boston Red Sox. Curt and Shonda's son Grant was diagnosed in 2007 with Asperger's Syndrome.
The Best Kind of Different details the journey Shonda made with Grant and what Aspergers meant for him and their family.

Bob Costas has this to say:
"In this moving and insightful book, Shonda Schilling explains how she and
her family came to understand and appreciate what makes her son Grant the
Best Kind of Different. In the process of telling their personal story, she
sheds much needed light on this often misunderstood condition.”

I am happy to see that AS is being discussed more and more, between TV shows like NBC's Parenthood, and books by Richard Lavoie, Jed Baker, Tony Attwood, and now this memoir by a world-renowned sports figure. Slowly, our "informed" culture may actually be brought up to speed on this little-understood condition.

Thursday, February 25, 2010

Felix the Therapy Cat


I have a cat. Not just any cat. This cat was the one we kept from a litter of six kittens born in my husband's closet the year we moved to our old farmhouse. This little boy-kitty had some distinct features that endeared all of us right away. Big, blue-green eyes, white stockings and chest and a white mustache on his otherwise black short fur--he was not the prettiest in the litter. That distinction would go to his Siamese-looking sibling, or his white, long-haired brother, or the white and tabby-spotted long-haired sister. They all found homes, but Felix stayed. Natural selection? Survival of the fittest? Hardly. More like last one picked, sticked. My husband relented and allowed him to stay.

Felix was possessed of a strong sense of himself from the start. A loud, sibilant cry announced his arrival or particular need, usually for food or a warm lap. His resonant purr rewarded those of us on his staff for our prompt accomodation. A sharp cuff from his mother kept him in line when he wandered too close to the road, or too close to her feeding dish. His hunting prowess was unparalleled.


But the most striking feature about Felix wasn't his yowl or his milk mustache. It was his uncanny ability to calm my son. Out of five of us humans who share his domicile, Felix sought out my son to sleep with, to visit, to cuddle with, to play with. He would spread his time out with all of us in good measure, but there was no denying that Felix and my boy had a special bond.

I have heard of therapy animals, and have seen video of well-trained dogs who visit nursing homes and hospitals, but a cat who naturally assumes the role of comforting an autistic child, I have never experienced.

Felix will turn seven years old this summer, on Father's Day. What a good and perfect gift he's been from the Father of Lights.

Tuesday, February 23, 2010

specialist appointment

Attended a six month check-up with my son's specialist today. After a two-hour drive, we were ready to stretch our legs and find our check-in on the sixth floor. We saw a nurse practitioner who was very encouraging and helpful regarding the dietary changes I've been considering.
After that, we went to a science museum and had the place virtually to oursleves--every mother's dream who has a child prone to overstimulating in large crowds. Things went very well until we got to the restaurant. He couldn't eat and wanted to go home! There is only so much you can expect to go smoothly in one day outside of routine. I'm proud of the little buggar. He did great.
God answered the prayers of many who lifted us up for this appointment. I am so grateful for praying friends.

Friday, February 5, 2010

Obama Administration--two strikes!

My son participated in the Special Olympics last year right around the time when our illustrious leader made a slur about bowling in the Special Olympics. Can you guess my son's event? Yep. Bowling. It was supposed to be a proud moment for him to participate. He traveled to another town with his class of fourth graders to compete for a trophy and Andrew put his whole heart into trying for his top score. He had to overcome great anxiety, traveling with out his father and me, and acclimating to a strange place where he'd never been, with the lights and crowds and sounds and even changing shoes--each of these elements alone could have triggered a meltdown. And then, not winning. Not even among his group. Under normal circumstances, this should have been a nuclear emotional event. But I am sure due to prayer and great poise and effort on his part, he made it through and managed to have some fun. Until the leader of the free world denigrated the whole experience.

I heard him myself. It hurt. For a man who clearly understands how difficult it is for a minority to overcome--one who has the advantages of intellect to say this, too--felt like such a betrayal of all that is fair and just. And then, Mr. Obama apologized, and I had to accept that apology, despite the damage it caused a great deal of people, and a cause that was founded on the ideals of tolerance and nurturing and support. I took him at face value. he was sorry.

Now, hardly a year later, Rahm Emanuel has been quoted using the word "retarded"--I'm sorry--"fu__ing retarded". I'm sure there will be apologies issued again. The occasion has been decried by the ARC and other advocacy groups. And the people of this great country are a forgiving people--we will forgive again.

Let this be the last irresponsible slip up by this administration, please, against the disabled. Our children have enough struggles without having to feel abandoned and ashamed by the ones who are supposed to defend them. If there is a third occasion, I for one will consider it a third strike. In my book of fair play, they will be OUT! I can only assume that three times is intentional, and perhaps indicative of an underlying attitude toward this vulnerable population.

Tuesday, February 2, 2010

review of Phyllis Wheeler's ebook, Nurturing Your Asperger's Child



Lately I have been praying for the Lord to give me some fresh strategies for my Aspie son regarding diet, socialization, anger management and schooling. Even the niggling fear of bullying that he has already started to experience. And yesterday I learned of a website, http://www.phylliswheeler.com/CuringAutismBlog and of Phyllis Wheeler's e-book, and found some of my questions answered, plus a way to learn even more.

Written from a Christian perspective and yet with the wisdom and intuition of an articulate mother, Phyllis shares her considerable experience with Autism and Asperger's in particular. She shares about three of her children with an Asperger's diagnosis, one of whom she feels has the ADD and social challenges mimicking Asperger's but more due to attachment disorder than true Asperger's. She also discusses her brother, who was diagnosed with classic autism in his youth, but who now lives independently. She is a natural authority on strategies and resources and management skills for the peculiar needs of these kids, particularly how to maintain their self-esteem when the world seems set against it.

What struck me more than anything was her depth of understanding for the condition itself. Her explanations of the seemingly insignificant challenges these kids face gave me several ah-ha moments, such as her discussions on eye contact, small talk and discomfort in group settings. It gave me reference to relate to my son, since I have struggled with these most of my life. Her methodical approach to overcoming these through repetitive role playing and neurological connection-building gave me great hope. I attest to the truth of this method, since i unconsciously followed these strategies on my own life and have overcome two out of three. I am still uncomfortable in group settings. ;)

The list of suggested reading gives me a springboard to pursue further the ideas she set forth. I had heard of Caroline Gray's Social Stories work, but I didn't know that Gray also addresses bullying. I have connected with a yahoo group on homeschooling with Aspie kids thanks to Phyllis's suggestions. She recommends strongly considering homeschooling at the ages of 12-14 when bullying reaches its peak during adolescence. My husband and I have discussed this idea in the past, and this gives me the courage and pathway to pursue it further.

I am thankful for this little e-book, and plan to share it with my husband over the next several days. He works in human services and is familiar with the charts and reward system suggested in the book. Her sample charts were just the model I needed, with all of the examples of reward systems that I feel will work with Andrew. I can't say how valuable this resource has been to me as an undiagnosed adult Aspie, and as a mother.

to order this e-book, go to:
http://www.nurturingyouraspergerschild.com/

Wednesday, January 27, 2010

He uses the weak to lead the strong

I have had pneumonia for a week, now. Maybe longer, since it was diagnosed a week ago. Aside from coughing and breathing difficulty, the most pronounced symptom is utter weakness. Weakness that makes the most basic functions gargantuan, like retrieving the mail from the mailbox or carrying a load of laundry upstairs. I thought I was going to collapse a few times,just tying my own shoes. Weakness sucks.

All of this illness makes me feel so useless. What good am I if not the cleaner, cook, caretaker, facilitator and homework taskmaster in my home? Or if I can't help out my writing critique partners or accomplish something quantitative? Weakness in our culture is generally viewed as despicable. Our heroes in fiction, movies and sports must be people in charge, movers and shakers, the mighty, the intelligent, the proud. As a culture, we place ultimate value on strength, independence and achievement.

But does God?

What does He mean when he says in I Corinthians 1:27 "But God hath chosen the foolish things of the world to confound the wise; and God hath chosen the weak things of the world to confound the things which are mighty." Could it be that God, the most powerful force in the universe, values weakness? Could it be that when we come to the end of our own strength, that is when His grace can fill us most effectively, to make us conduits of His power?

Chris Tomlin says it this way, in his song "Your Grace is Enough"

"Great is Your love and justice God
You use the weak to lead the strong
You lead us in the song of Your salvation
And all Your people sing along

So remember Your people
Remember Your children
Remember Your promise
Oh God

Your grace is enough
Your grace is enough
Your grace is enough for me"

I have made peace with my weakness. Of course, it is easy for me, since mine is temporary. But for our children who face challenges, weaknesses, and struggles every day, coming to terms with disability is a lifelong commitment. I am thankful to have this promise form God to comfort my son with: God's grace is enough, for he is strongest when we are weakest.

Embrace your weakness today, and be a conduit of His glory!

Saturday, January 23, 2010

Related blogs and websites

The following comprise a list of helpful sites for further reading:

http://specialprayers.wordpress.com/
KellyJo Hautz Griffin

http://www.differentdream.com/
Joan Philo

http://www.specialneedsparentcoach.com/
Joan Celibi

http://specialchildren.about.com/b/
Terri Mauro

http://www.autisticadvocacy.org/modules/smartsection/category.php?categoryid=8
the Autistic self-advocacy network

http://autism.about.com/
Lisa Jo Rudy

SPD foundation

Disability is Natural newsletter by Kathie Snow
http://www.disabilityisnatural.com/

Friday, January 22, 2010

Disability and the Movies

Brandon Frasier and Harrison Ford appear in the release Extraodinary Measures this weekend, about a boy with Pompe disease and his parent's struggle to find a cure. The New York Times review hailed the emotional impact and the life lessons learned in this movie. http://movies.nytimes.com/2010/01/22/movies/22extraordinary.html Most agree that it accurately reflects the angst that parents of children with special needs experience. Recall Lorenzo's Oil for an older version of a similar plot line. Susan Sarandon and Nick Nolte played parnets who researched for a cure for their son's rare and deadly disorder. Do you feel that these movies are helpful to raise awareness of the plight of parents with disabled children?

Sherlock Holmes has mixed reviews from movie-goers. Most rave about Jude Law's performance as Watson, but many are put off by the characterization of Holmes by Robert Downey, Jr. as flat, non-engaging, austere, and detatched. These qualities are Sir Arthur Conan Doyle's trademark of Holmes, and have led some to believe that Holmes personifies an adult with Asperger's Syndrome. In a writer's coffee clatch recently, several gals had decried the character as lacking in qualities that garner audience sympathy. Is this how the general public views suffers of Asperger's? I found it interesting that once I shared that tidbit about the possibility of his behavior owing to disability, many exppressed more sympathy for Holmes.

Bruce Willis starred in one of my personal favorite movies depicting a child with autism, which came out in 2006. Mercury Rising centers around a boy who memorizes a series of sounds from a phone code and accidentally taps into a top-secret operation headed by Alec Baldwin, who ruthlessly seeks out this vulnerable child to stop the breech. I found the young actor's portrayal of an autistic savant one of the most interesting in film.

A title worth watching, Rain Man is another sympathetic and true-to-the-mark portrayal of autism by Dustin Hoffman. An adult savant, Raymond Babbitt has a gift with numbers, and his wheeling and dealing brother charlie, played by tom Cruise, takes him to Vegas to count cards. In a particularly poignant scene, Raymond learns to dance with his brother, and momentarily overcomes his aversion to touch.

What are your favorite or least favorite depictions of disability on the movies?

Sunday, January 17, 2010

Isaiah 54:13

"And all thy children shall be taught of the LORD; and great shall be the peace of thy children."
NKJ

Why does this verse speak to me as I attempt to raise my son with Aspergers Syndrome?

For me, this promise brings me peace to know that God has the peace of my children in mind. Let's face it; raising children with disabilities and special needs is stressful. Will my son be able to handle deviations from his routine without a screaming meltdown if I have to run out for milk? Or if something even more serious happens, like the death of a parent, how will he cope? Raising a child with special needs is often heartbreaking. Overcoming one obstacle can take months or years, only for another to surface. Victory over social challenges in my son's case lead to trouble in school for too much socializing, for example. But God promises that our children will have peace. Great peace, actually. That is a promise that I find greatly comforting and relevant. One of God's names is Jehovah Shalom, the Lord our peace. He IS our peace when circumstances blaze like wildfire. If we cultivate that relationship of faith in God with our children, we give them a connection with the One who promises to be their peace farther than our parental, earthly influence can reach.

But the first part really grabs me. "All your children will be taught of the Lord."

I have a son for whom academics, socializing, music, and just about everything came easy. He was a laid back kid, always smiling. I didn't have the worries for his future that I do for son #2. Questions plague me for his future.

Will he be able to grasp the subtle nuance of interaction among a competitive office or work environment? Can I impart the skills he needs to prepare him for the real world? How many hours will it take tonight for my son to "get" the math homework? I can grow a complex faster than kudzu when the burden falls on my shoulders. How can any of us rise to the gargantuan task of teaching and preparing for every possibility? Kids with Aspergers are pretty concrete. If you say ABCD, you had better not change it to DABC. They don't handle the unknown very well without thorough preparation, such as social stories. (we'll discuss Caroline Grey's Social stories on an upcoming post).

This is where that promise swoops in like a caped superhero. God will teach our children. He designed their minds and bodies, and he holds the manufacturer's manual. He knows how they learn. If we pray, He can give us strategies. But even better, He can orchestrate the right circumstances, people, places and impressions to impart the needful information. Thank God for an infinite God!

Friday, January 15, 2010

Help a Falsely Accused Disabled Boy

Zakh Price is eleven years old and has been charged with felony assault. If this isn't shocking in this day and age, consider the fact that his school administered an illegal restraint on him. For what you ask? He refrained from harming a person, but he damaged school property. Still not jolted? Zakh has autism.

To give some perspective, my son for example is eleven, and has the highest functioning form of autism, Asperger's Synrome. He is very bright and has a tender heart, but there are times when his anxiety becomes so severe that he reacts in a physical way. Flight or fight mechanism. Zakh Price was not given the option of flight, so he chose fight. He harmed no one. He is to be commended.

His school district superintendent and principal at Fort Smith Public Schools have filed charges against him for felony assault. The purveyors of knowledge and enlightenment, instead of re-examining their policies and updating his IEP to include a behavior assessment, are making this a criminal matter. They are reacting to this child's anxiety with the equivalent of throwing him into a modern day snake pit. Outraged yet?

You can speak up for this child, who has no voice. You can email the principal and the school district and respectfully but emphatically ask them to drop the charges and update his IEP and re-educate their staff.

Here is a link with the info:
http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=103