Autism Awareness Day 1

April is Autism Awareness Month and I will be posting every day this month about autism....something to learn, websites, events, etc. It is a confounding disorder, easily misconstrued and what works for one family may not for another. I hope to make sense of it myself and hopefully provide some discussion and inspiration for others.

Why is this important to me? Our son Connor has autism. Simple as that.

I am asking you as a blogger friend to please post a link to my blog and invite everyone you know to stop by. Not because I know a lot, but because we all know or will know someone with autism.

First of all: April 2 is World Autism Awareness Day. Tomorrow-if you can-go by Toys R Us and donate a few dollars. Maybe pick up a developmental toy for a kid with autism or donate one. Stop at Barnes and Noble-over 500 locations are hosting story time for autism-both for kids with autism and to teach children about others with autism.

What is autism? I'll be honest here-as the risk of sounding like an uneducated educator-I have taught children with autism for years. I did not understand it until my son began showing the signs.

Autism is a neurobiological disorder (a brain disorder) that typically impairs an individual's communication and social skills. It is a medical condition. No one knows why it happens and there is no cure. While persons with autism can make significant progress, this disorder is for a lifetime. Right now, autism affects 1 in 150 children, 1 in 94 boys, with more than 24,000 new cases diagnosed in the U.S. each year.

Symptoms are usually detected around 18 months of age, but many children are not diagnosed until around or after age 3. Information is being gathered about these children as infants, but nothing is documented on infants with autism. For some parents (like us), the child appears to be developing normally and has an abrupt decline or stop to all communication and learning. For some, it seems to happen overnight.

Learn the red flags for autism-whether you are a parent or not. I have read stories where a friend, grandparent or babysitter has alerted the parent to something amiss.

From the Autism Speaks Website:

• No big smiles or other warm, joyful expressions by six months or thereafter

• No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter

• No babbling by 12 months

• No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months

• No words by 16 months

• No two-word meaningful phrases (without imitating or repeating) by 24 months

• Any loss of speech or babbling or social skills at any age

Autism does NOT mean mentally retarded-many, if not most children with autism are intelligent, some beyond what we could imagine! (there is quite a "who's who" list of famous individuals with autism-saving that for another day!) That being said, some multiply handicapped students also have autism. The two are not always linked. So, be careful to use the correct terminology. Autism also doesn't mean that you take some medicine and a few weeks later, you have a cured child. However, some parents are convinced that a child can be cured with biomedical therapies and diet. Be aware that what works for one child may not have the same result on another.

Some parents are very sensitive to saying "autistic child" versus a "child with autism". Be careful here and see what the parent and/or child prefer. Why so P.C.? Many people believe that the child is a child first and autism does not define the child. Some parents are okay with "autistic"; some circles even say "auties." Be sensitive to what the parent wishes-they have enough to deal with. Many parents are tough advocates-some of them give up careers and income in order to care for a child with autism.

Autism is such a broad disorder by definition. It is a spectrum-including classic autism, Autism-PDD-NOS (pervasive developmental disorder-not otherwise specified), Asperger's and Rett Syndrome -meaning a child with autism can fall into one of these categories depending on his/her particular set of characteristics. Young children can (but not always) move on the spectrum as they get older. With autism, most children develop rigid routines or repetitive behaviors. I will interject here that many of these routines and behaviors serve to regulate the child's sensory system. It can produce a calming effect on them when things get too hectic or they feel overstimulated. My son lays on his side and rolls his little car back and forth when he is overloaded or tired. We ALL have something that calms us-we just might not choose to line up toys, flap hands, spin in circles or roll a little car back and forth.

Autism is NOT the end of the world. My son is beautiful. He is filled with fun and joy and all the typical trappings of a toddler. I would not trade him for the world. Sure, it is hard-sometimes we are tapped out emotionally and other weeks we coast along. We have had supportive hands around us all the way-before he was even born. So autism put a bit of a monkey wrench in our master plan. Now we are busy rewriting the plan.

Comment for the day-if you would like to add anything you feel is important to know about autism itself, please share. And if you know someone with autism-think of one terrific thing you can tell us about them!

To site my source of information: www.autismspeaks.org

Sunday Poem of the Week

I see her eyes in the mirror

Her skin on my body

Her color in my hair

And I think of miracles

And I think of her impression

on my life

The love I carry in my heart

for this woman

is probably unequaled

To the love she carries for me

lgm 10/94

Oceans of Grief

While visiting Santa Monica Beach last week, an entire section of beautiful crosses, Stars of David and moons (?-not sure what the moon represents) stood in the sand, representing the fallen heroes from the Iraq War.

As we were walking by, there was a guest book to write in. I saw a woman-probably a mother- pen in hand, head down. Unable to write. Unable to go on at the moment. Strangled by emotion, so raw and painful to see. A friend, relative, stranger-I don't know-had one open palm on her back, just reassuring and steady until she was ready to write.

And me. I put my camera away. Unable to imagine. Unable to know the oceans of grief and sorrow of losing someone you love in this way. But I could and can be the person that fills the human need for caring in silence. That gesture I witnessed was so loving, supportive and beautiful.

We walked onto the pier with the boys and after several minutes had passed, I looked back down to check on this mother and she was still there. Head down, still gathering strength. And her friend, still there with that gentle hand in place.

My heart goes out to these woman and I hope some peace will find them both tonight, even for a moment or two.

"If a child is to keep alive his inborn sense of wonder, he needs the companionship of at least one adult who can share it, rediscovering with him the joy, excitement and mystery of the world we live in."

Rachel Louise Carson

Our little guy hanging with Daddy while we were in LA. He has made outstanding gains, especially in language in the last few weeks. He is saying "Mommy" and "Daddy" to all three of us-which he never acknowledged us by name at all. Of course, Ian is not entirely thrilled with being called "Daddy", but we're working on it. He is beginning to add two word repertoire, usually "more, please" or some version of more and please. He is doing puzzles on his own. Still like the little cars, still gets into his own world and still has Houdini stamped all over him. Some things still seem to be in the future, but we are confident they are in there somewhere, waiting to appear in all of their glory.

Next month is Autism Awareness Month and I am planning to include a blog entry each day highlighting some interesting research, books, websites, links to other blogger friends with great children to tell about and stories of my own. I will not judge other parent choices-I will only say what works for us or what we observe or present as objectively as possible. Let's just see what we learn and go from there.

I hope you will stop by before that-but please plan on visiting in April (I will include regular posts too-we are more than just autism here!!!) and please send a few friends over to read as well. I feel like it's one way that I can do my part and feel more enlightened myself!

Finally-I have to thank my friend Jeni who sent me a gift of jewelry and ribbons for autism-thank you so much. She is walking for autism in honor of her two adorable grandchildren. I love reading her family stories and I appreciate her presence in my blogosphere. Walk on, Jeni!

Saturday Wordzzle 5

I am really enjoying these exercises-so much that I attempted the MEGAwordzzle tonight! Woohoo! Don't forget to check out Raven's blog to see some more excellent examples. I need to give her a extra shout out because I am writing so much more than I have ever been. Thank you, thank you, thank you.......

This week's words are:

arbitration, music, salamanders, frankinsence, trojan horse, balderdash, bottomless pit, fantastic, pugnacious, Trivial Pursuit

And for the mini challenge: maniac, video store, telephone pole, flute player, windy day

And my take:

On a windy day outside Salamanders video store, I met a maniac flute player, as tall as a telephone pole. So fantastic was she that I felt myself becoming pugnacious, simply because her gift was a bottomless pit and mine was a mere scratch. Over a game of Trivial Pursuit, she told me about her composition, “Trojan Horse”, offering me a sample like a wise man offering frankincense.

And the music became our arbitration. The next night, over a game of Balderdash, we fell in love.

Uncle Mike-The Coolest Ever

Walking on water

God-like and masterful

You have become

What I always knew you would

I watch my boy

Hear his tiny voice

Feel the little hand slip

A spirit lighthearted, devoted

But not to me

Walking on water

Bowls of ice cream

Garbage cans

You make the ordinary

Extraordinary

Your role more important

Because in your perceived infallibility

The moment to teach and love

Is in your grasp

Please be gentle with his tender heart

As you teach him not to be fragile

And take him out on the water with you

Let him try to be God-like and masterful

And he will become

What we always knew he would.

-lgm

Uncle Michael has always been very high on Ian's list. This weekend, he was elevated to rock star status. Uncle Mike was "the coolest", Daddy was a close second and Connor will be cool when he stops being a baby. Aunt Terri and Mommy did not rate because, of course, we are girls. Although in Ian's words, "I love everyone!".

Since we had to drive two cars for much of the weekend, Ian enjoyed riding in Uncle Mike's car, without even a glance back at Daddy or Mommy. We had Connor, so Ian got Uncle Michael and Aunt Terri all to himself on the car rides.

Uncle Mike normally has some major activity or goal for himself (this year is a sailing race!)-last year he was climbing Mt. Whitney and anytime we were visiting, he would carry Ian and occasionally both Ian and Connor for our walks so he could practice walking with the extra weight. This weekend, Ian insisted on being carrying by Uncle Mike as often as possible-excellent practice for him and my aching arms were grateful for a reprieve.

We know Michael relishes his role as uncle and Thomas and I both were talking about it on the way home that this is what we wanted for the boys. We never felt the pang of being second-rate, no matter how much we joke about it. (and we do!) To have someone that Ian loves and respects, someone who, much of the time, turns out to be our role model too, it's a tremendous gift to have Cool Uncle Mike in the family.

Wordzzles - Finally!

I looked back at Raven's post and realized I missed a set of words from last week-but here is this week's challenge. I kept it short and sweet, considering all of the other writing I had to do this week for work.

horse shoe, antique chest, marigold, lunatic, science fiction, Oregon, previously, 10 billion, google, tree hugger

My name is Marigold, previously a tree hugger from Oregon. I am one of about 10 billion bloggers, I am addicted to google and happen to be one of those lunatic science fiction fans. At a desk shaped like a horse shoe, I work on my blog called Antique Chest.

Feast One Hundred and Eighty Four

Appetizer

Given the choice, would you prefer to live in the country or in the city?

I would probably like a city versus the country. I know my husband and I both have loved living near major cities for our entire lives with all their offerings.

Soup

Who is the cutest kid you know?

Is this really a question?? My two boys are always at the top of a very long list of cutie kids.

Salad

Fill in the blank: I couldn’t believe it when I heard ___________.

I couldn't believe it when I heard about 9/11.

Main Course

If you could star in a commercial for one of your favorite products, which one would you want to advertise?

It would be my Lip Smackers lip gloss that I wear every single day for about 13 or more years. Of course, a 3* year old lady wearing teeny bopper lip gloss would probably NOT sell much.

Dessert

What type(s) of vitamins and/or supplements do you take on a regular basis?

I try to remember my multivitamin and B-12, plus I take some herbs now in squirt and pill form.

Good People for Good Causes

Who doesn't enjoy some good humor with a cause? Check this out and mark your TIVO, VCR or DVR to record.

Comedian's Autism Fundraiser


Second, hop over to my friend Jeni's blog. She is walking for autism and has a great blog about her two grandchildren.

Finally, we are in LA. I promise to get to the Wordzzles, Poem of the Week and all the fun things going on here, including the rock star status that Uncle Mike has achieved. Effectively putting me and Tom at chopped liver status. I know you cannot WAIT to hear all about it!

Be back soon!

Friday Feast 183

Appetizer

On a scale of 1-10 (with 10 as highest), how much do you like your own handwriting?

Well, I am about to sound like a bit of a moron, but here goes. I rate my handwriting when I write on a dry erase board, chartboard, with felt tip pen, mechanical pencil or Sharpies as a 10! I love it and I can print really well! I rate my handwriting with a ballpoint pen as a 1 or rushed handwriting as a 1.

The truth is that I am fascinated by handwriting. I love different lettering styles and copying other people's lettering. In fact, in high school I practiced a different signature almost every week. I would go to the bank and deposit my checks and would use the same teller each time. He finally told me to pick one signature and stick with it. I actually told him that sounded pretty boring! He had to explain why we use one signature. My signature has gotten progressively messier over the years-almost doctor-like now!

Soup

Do you prefer baths or showers?

I prefer showers where I can change the temperature at will. I like baths but it would be nicer with one of those jacuzzi tubs.

Salad

What was the last bad movie you watched?

I so rarely watch movies. Probably something that Tom was watching. (sorry!)

Main Course

Name something you are addicted to and describe how it affects your life.

I am addicted to checking blogs and email. Why, I don't know. I spend a good portion of my free time reading blogs or writing blogs and comments.

Dessert

Which instrument is your favorite to listen to?

I love classical guitar and its repertoire. I also love my husband's guitar transcriptions on marimba. He is one kick-ass player, so whatever he is practicing or performing is awesome. I also enjoy agogo bell.

Laundry Basket of Brothers

Oh, sweet laundry basket
If there were only enough room for more
Delightful fun
You are tunnel, transporter
And a place to rest
No more to hold clothes
For we've something better
A cave, a helmet
A place to hold brother
Go spend all your money
On toys fancy and noisy
The dust soon will gather
Those toys uncreative and usual
But we'll take our basket
And use it to harness our dreams.

This little basket that Cindy gave me a long time ago has been the source of great fun and grand arguments between brothers. They need rides about the house, they hide and carry cars and Star Wars guys about. Tom actually put it away in the closet, putting his laundry inside it. And Connor, never challenged by obstacle, pushed the entire heavy basket right back out to play.

The poem is off the top of my head and totally not edited, as you could so obviously see.

Trying to write a grant today.....not much time to play. I am about ready to stop for the day. There's a bit rhyme for you!

Star Wars Quiz

For Bob and Rich.....Tom is grooming Ian. Take a look.

My favorite is Chewgabacca.

Conga Kids

This is for Super Aunt Sooooz, some extra smiles for your day.

Another Alternative

I have been searching for some alternatives to certain medications, especially after the Depo shot threw me completely out of whack after only two shots. I stopped the shots over a year ago and my system is still fighting with the effects. My doctor who delivered my two boys and whom I love and trust seemed to find nothing physically wrong (good) but continued to recommend low dose birth control and other hormone adjusting solutions. She said there really wasn't another way to help me get back on track. I was disappointed because I was done with all of the hormone stuff.

My sister-in-law and my mother-in-law both have had success with acupuncture to restore their health to a sense of normalcy. After a long heart-to-heart with my sister-in-law who I trust implicitly, she talked about how acupuncture was able to regulate and help her. I decided to try it and researched to find a great person.

Yesterday was my first appointment. Mindy talked with me for a half hour with many questions about life and health. My pulse and blood pressure were good, which surprised her a little. The fatigue from low iron was a concern, so she wanted to focus on that area so that I don't become anemic. Then she set me up for a treatment.

The needles felt like flicks on my skin-not painful. I was a little tense because I wasn't sure what to expect. She said it would be great if I fell asleep, but some people don't. I closed my eyes and tried to meditate. I felt incredible energy in my body and my imagery was vivid. I kept picturing myself diving off of a cliff into water, but in the air I was somersaulting, turning and spinning before hitting the water. It's odd because I do not remember dreams unless I am sick, but this is clear, even as I write.

Following the acupuncture, she also gave me some herb tablets and tincture to take twice a day. Let me say that the tincture is unpleasant in taste to where I have to chase it with some water or juice. Ick. She also asked me to eat iron-building foods and gave me a list. I also get to have a glass of red wine more often to help the blood. (Julie-Yellow Tail!) I will return in two weeks for another treatment and see how things are going.

Today's schedule: Off to finish painting the laundry area, going to Home Depot to fix the dryer coil, Connor's OT appointment and a major donor workshop in Phoenix, then a ton of grant work this evening. The boys are excited for Home Depot (tractors!) so off we go.

The Napping House

Over the weekend, Tom was feeling tired and had gone in to take a nap. Connor also was in his room to nap. That left Ian and me, on the couch reading books. After practically nodding off while reading "Froggy Plays T-Ball" for the fourteenth time, I decided I was going to take a quick nap on the couch. Ian wasn't interested in resting on the couch with me and he was disappointed that I wasn't going to play with him. I asked him to find a spot where he wanted to rest and he could look at a book by himself or just sit quietly. My eyes closed and I was sound asleep within seconds.

Connor woke up a while later, so I got up to get him. I looked on the floor-no Ian. I walked into the boys' room-no Ian (Connor was there with bells on). Check in on Thomas and no Ian there. Not in the bathroom. I walked into the kitchen and didn't see him-almost panicked, but I turned around from the kitchen and looked at the trampoline and found my little boy.

He had found himself a spot.

And the moment of realizing how precious this little boy is flooded my senses, reminding me how much I fall in love with him over and over again.

Sunday Poem of the Week

Well, I didn't have time to scout out a decent poem, so I picked one that is simple and not good. I wrote it eons ago while living in the apartment with my mother. I remember vividly sitting and watching this fan go round and round during the humid summer months. Thrilling, I know.

Anyway, my husband and I are watching kids overnight and all were tired, none were interested in actually going to sleep. Maybe if my fan had been on and they were reading this poem.....

The blades spin
The air cools my room
The noise is annoying
But I love my fan
Especially on a night
Like tonight.

Wordzzle 4

Okay, I am on a roll with the longer Wordzzles.....here's this week's challenge from Raven. Wait, am I actually a week ahead of something???

Next week's challenge: Bolivia, Green Goddess, virtual reality, laundry, ample evidence, matches, your mamma don't dance, sugar, saucy, sofa cushions

I’d like to be a Green Goddess. Plumped sofa cushions, laundry folded and sugar in my coffee, exotic vacations to places like Bolivia. Anyone who says “your mamma don’t dance” doesn’t know how saucy I could be. A life that matches my spirit.

Ample evidence speaks to the contrary. The cushions are strewn about the floor, the laundry is damp inside the washer, no coffee maker and vacations are spent dancing with children at home.

But it’s so nice to live in a virtual reality when you can.

Raven's Wordzzles

I finally completed a Wordzzle! Visit my friend Raven's blog for details and some great examples. Here are the words:

Yowling cat, ink stain, fever, river bed, home improvement, laughable, motorcade, broken camera, crafty and bourbon

Here's my take:

The motorcade made its way, while the weather burned like a fever and the community gathered along the sidewalks. As the car passed, the sound like a yowling cat erupted from the people. Many congregated by the home improvement store, a city trying to rebuild from pieces of broken dreams. Others sat along the parched river bed, a bottle of bourbon in hand, knowing that the promise of change was laughable. This place was an ink stain for such a crafty politician, like a snapshot from a broken camera. They were invisible.

Friday Feast One Hundred Eighty One (?)

Appetizer

If you could be any current celebrity for one whole week, who would you want to be?

I'd love to be Jennifer Aniston for a bit. She has a good sense of humor and she always seems to be walking along the beach in cargos and comfy clothes. Love that.

Soup

On a scale of 1-10 (with 10 being highest), how much do you enjoy talking on the phone?

Hmm, I'll say 2. I do call family and friends, but I am not a good conversationalist on the phone. I would MUCH rather email.

Salad

Name a charitable organization to which you have donated (or would like to).

We have donated to Susan Komen Foundation in honor of my sister-in-law Suz, a survivor and also my friend Tew's mom, who will always be in our hearts. (Ian was her "boyfriend") We recently donated to the Sonoran Desert Chorale and we donate tons to Goodwill.

Main Course

What is a food you like so much you could eat it every single day for a month?

Pizza. Definitely could eat it daily -NY style only. I also love Jamba Juice Energizer drinks, but I would go broke after a month.

Dessert

Have you or anyone in your family had the flu this year?

No flu here and we don't do the flu shots for any of us. The boys hardly ever (knock on wood) get the full-fledged flu. Tom has had pneumonia forever.

Ted: The Second Generation

'Meet Ted. A cute, well loved and well worn little bear who is being passed down from father to son. Ted stories abound and I will have to defer to Thomas telling them as only he can. (can anyone get him to start a blog? Do I hear a cheering section?)

Ted has spent a majority of the last few years either in a box or up in the IKEA stuffed animal/dust collector holder. Somehow he made his way onto Ian's bed. I spent a portion of Ian's bedtime talking to Ian via Ted, asking him questions and providing running commentary on the day. Ian surprisingly talked to the bear instead of me and the next night, added another bear that he could use for his end of the conversation. Trust me, it was cuter than it reads here.
Ted is now going on car trips, going to daycare and becoming a very trusty little friend because "Ted is never scared. Ted's the coolest."

Today Ian and Ted had their very first visit to the dentist. You might recall Ian and Trevor's collision from a few weeks ago.....neither escaped unscathed. Tom noticed Ian's front tooth becoming a little discolored last week, so we decided to have him checked.

Ian was agreeable, as long as Ted would also be in attendance. In possibly the coolest dentist's office ever, Ian got to play with two train tables and watch some tv-complete relaxed and happy. The hygienist took an x-ray-again very cooperative- and said the tooth looked okay, just bruised. Ian then walked down the hall and got to sit on the surfboard dentist chair (how cool is that?!?) while wearing sunglasses during his exam. Dr. Welch was excellent with Ian, talked to him the entire time and made him feel really excited and comfortable. We have an actual cleaning scheduled for April and I WILL bring my camera.

Ian was rewarded with a sticker, a brushing chart and a token to choose a toy from the machines in the waiting room. The office staff enjoyed watching him carefully deliberate over the toys before he chose a parachute guy. Ted was close at hand the entire time.....in my book, these two are definitely the coolest.

The Ups and Downs

I am finding autism to be a swinging pendulum. One week -or even many-weeks -are bright, connected and you would just think that this is one special kid. Suddenly, everything becomes unbearable-the little car isn't quite right, the clothes are all wrong and comfort is taken in small doses. He has started hitting himself when he is angry or when he is told no. That is surprising and very disconcerting. Even the developmental therapist caught that one.

Yesterday, our wonderful daycare provider told me he cried for over a half hour because someone touched his snack tray. The day before, she ended up changing him into different clothes because he was distressed over the ones he was wearing. I have been searching for the plainest clothes I can find.

Last night, he was crying over a little toy and I wasn't even clear why. Then, more tears going to sleep.

All I know is we all go through moods and we all have off days and weeks.

I am taking a deep breath and we'll be ready to catch this little boy after another roll down the hill. We'll just have to carry him back up and hope the pendulum will be swinging back in our favor.

I was at work today in my "office" -a shared table in the library office when the librarian came in angry and frustrated. I always try to be polite and listen if she needs it-she has had a rough spot losing a parent over the holidays.

Apparently, she decided that if her husband has cancer, she is leaving him. She told me how she refuses to see another person through cancer and how it has made such a difficult time for her. So, she wasn't going to do that again. I was stunned speechless. She looked at me and said, "Pretty heartless, huh?" I didn't answer. She said she meant it and went on for a bit more about how he was on his own if he was terminally ill. On and on.

I told her that seemed really selfish and I asked her if she would want to be alone if she had cancer. She didn't answer me.

I could have said a million things but didn't. Sometimes I just don't know what to say.

Autism Speaks and Toys R Us Fundraising Drive

Help us find the answer. Next time you are in the toy store or if you are online and want to do something important, check out this website.

Click here!

Tell them Connor sent you.