Autism Awareness Day 8 and 9: Taking Care of Yourself

I am about to say something that is usually the opposite of what I do. Children deserve our very best attention, our best efforts whether they have autism or not. Parents who deal with autism spend a lot of time researching, writing, shuttling kids here and there, advocating and learning. Parents of ALL children also spend a lot of time researching, shuttling kids here and there, advocating and learning. We are all parents just the same.

Parents need to take care of themselves and remember their other life roles. They need to maintain healthy relationships with friends, family and work on marriage - not just parenting. What hard work that is. To carve out time for work (we work multiple jobs too) , therapy for Connor, time for Ian, time for both kids, time as a family, time as a couple, time for yourself, time to get the house in order, time to sleep.....seriously, I read the statistic on autism and divorce as being something like 80 percent. No wonder. Who has time to maintain semblance of a balanced life?

Well, Thomas and I have worked hard to get some of our time back. We try very hard to set aside 15 minutes of time for each other each day. Even that is difficult. I am not kidding.

Over the last few days, I have been feeling unusually fatigued and while I promise that I am working on the medical reasons.....I am finally seeing how truly exhausted I am. How almost everything in my life is suffering as a result of this bone-deep weariness. It's time to take care of myself too. Something that I find incredibly difficult-I need to be the one up and going, cleaning and caring, running and doing. Whatever ailment my body is handing me, it is forcing me to slow down so I can do a better job of being fully present when it's time for my boys and my husband.

I know a lot of mothers who are just like me-they place their children and husbands, work and all ahead of themselves. We probably figure once that's all taken care of, we'll find a moment for ourselves. And the truth is that if we wait and wait for that moment, it probably will not come. Learning to ask for a night off or taking an extra hour after work for a pedicure isn't the worst thing in the world, but it can be a huge guilt-ridden anxiety issue for some moms. For me, acknowledging that I probably should visit the doctor took some time to sink in. Good grief, even arranging a date night can feel terrible! Ahh!

Anyway, I am hoping that all of the moms and grandmothers and fathers -autism or not- remember to treat yourself to some time alone. Don't read an autism book, don't do the dishes. Get a cup of coffee and sit and talk to your spouse or friend. Paint your toes some cute color. Go for a hike or a bike ride and get some fresh air.

Slow down and enjoy a moment so that when you go back to those beautiful children, you feel ready to give them all that you possibly can give.

This post is mostly for myself-but I would venture to guess that there are a few faces out there who can totally relate.

Please, please-visit the following friends who are blogging for autism-leave a comment if you have a moment too. It's what I am off to do next....

Raven: This post was astounding. Read all of the comments too.

Casdok: The controversy of the puzzle piece representing autism-I loved her thoughts and it's very informative reading.

Jeni: Sharing her journey with her two grandchildren-she is walking on April 12th for autism too. Amazing!

Laura: She is writing about Matt, her son and also providing a wealth of research on autism. I am learning a tremendous amount from her. You have to stop by and look at his picture-what a handsome guy.

Autism Awareness Day 7: The Birthday Boy

Our little guy turned 2 on Monday, following a fun weekend of visiting with Uncle Mike and Aunt Terri, plus a small celebration with Trevor, Aunt Cindy and Uncle Rick on Saturday night. Connor was a little overwhelmed by Monday, but we kept his actual birthday simple and kid-friendly. One of Tom's favorite birthday traditions is picking out your favorite dinner for your birthday. His mom would cook whatever he wanted. With Connor, it's a little trickier because he doesn't say exactly what his favorite is. Being a hearty eater, we know he won't turn down a good meal, but older brother Ian stepped in to help Connor's choice. And we ended up at McDonald's.
Following McDonald's, we went to Cold Stone Creamery-which is a family favorite and the boys got to choose ice cream as a treat. (we had an ice cream cake on Saturday-so Connor did have an official cake) The sugar put Connor in a stellar mood-running about and smiling.
A few of my family and friends have children who are much older now, but I will say that it is very hard to believe that Connor is already two. I feel like life passes us in the blink of an eye.

My autism comment of the day......Connor tends to be overwhelmed by a lot of new and different things. We kept the presents to a few and dispersed them over a few days, but it's hard to have a lot of new things in the house. For many kids with autism, overstimulation can lead to some dramatic meltdowns. (especially with an older brother who wants to play with the new toys too) We have to remember to keep things simple for him.

Autism Awareness Day 6

Unfortunately, I am not feeling too well today and so I am a bit late on today's post. I will invite you to visit several friends who are blogging for autism this month and a few who are lending supporting hands, which are welcomed at any time.

Jeni: Her two cutie grandchildren both have autism and she writes about their lives, always keeping up with their antics and sharing fun stories reminding us that these two are definitely kids first. She is also walking for autism as well and does a lot to uplift other bloggers (myself included) whose families are affected by autism.

Laura: Another great friend whose son has autism. She has helped me with sign language questions and self-injurious behavior. In addition, she has some great stories about her adorable Pekingese pups who are very near and dear to her heart. She is also blogging for autism and I hope you will stop by and make a new friend in her.

Dianne: She is my newly adopted family member and she has a terrific blog. She has written some amazing entries and I always look forward to stopping by and seeing what she is up to, plus she is just so supportive of the autism community and her blogger pals.

Raven: Raven is just a great writer, period. Her poems are gorgeous and she always keeps us challenged with the Wordzzles. She is a terrific friend and she has shared some wonderful entries, supporting the autism bloggers while also connecting all of us in the grand scheme of life.

Casdok: I adore her blog and have only discovered her this month through other blogger friends. She writes so beautifully about her life with her son. I encourage you to stop by.

Mary: Mary is another blogger who is a new acquaintance and her grandson has Asperger's. He is one handsome kid and she has blogging with some terrific insights into this part of the autism spectrum. I am learning a lot from her entries.

momlogue: A great place to find more bloggers writing about autism.

Michelle: Another fantastic writer who writes about her family with such love and honesty. It's a great blog.

While I haven't written much today, remembering that we are together in life-not just in autism-and having some friends who have walked in similar shoes (every shoe is different!) can make a huge difference in feeling healthy, inspired and ready to work on today.

Meanwhile, I am going to get some rest.....my post tomorrow will be epic-my son is turning 2! Stay tuned!

Wordzzle 7

This week's words were most challenging for me. My husband might and might not appreciate it, but he knows I love him.

The words for this week's ten Word Challenge were: fruitcake, necromancer, gibberish, marshland, Lone Ranger, hog-wild, effluvia, plaintiff, phonograph, fern. And for the Mini Challenge: frozen, history, myrmidon, Shylock, incapacitated

Here's my MEGA wordzzle take:

My husband was explaining his necromancer game to me, in a language sounding like complete gibberish. A bunch of fruitcake people sitting hog-wild, frozen in front of the computer. Meanwhile the dishes sit in a marshland, effluvia leaching out into the sink while my husband yells that his Lone Ranger character has been incapacitated; a myrmidon named Shylock swiftly approaching. I dust the fake fern and the old phonograph, as my husband goes on describing the creator of the game, who is also a plaintiff in a huge lawsuit. Yawn.

Autism Awareness Day 5: Music for Everyone

I'd like to share some children who have captured my heart this year-my special education music class, a class of about 15-20 children with various disabilities and handicaps-5 in wheelchairs, some with autism, some Down's syndrome, Tourette's- the gamut. As I have said, I have taught special ed students for years-many wonderful children, but this is the class that came at the right moment. Karma.

I start every class the same way, with a short hello song, where I sing to each student and shake his/her hand. Some of the kids will sing back, some won't. Some will not shake my hand, others will shake both. One likes to touch elbows. Another gives high-fives. One girl will clap her hands when it's her turn. One girl sings the hello song all day long in the classroom too. Today one student sang the hello song by himself loud and strong for the very first time. Last week, one of my girls shook my hand for the first time. Another girl, who is quadripligic has been looking at me with her eyes whenever I sing to her. One student with autism, will look at me when we sing the hello song and shake hands. He looks for a few seconds and then looks away and looks at me, looks away. It's great. It's tremendous for him. All of these little, seemingly simple tasks that have taken until the end of the school year for them to try. We cheer and fuss over them and they adore the attention of doing something so amazing like shaking a hand.

A few weeks ago, I did a song called Punchinella, where one student can come to the front and create a motion and the kids sing and copy the motion. I tried it with the special ed kids, not sure if they would be comfortable or not. As it turns out, they adore this song and almost every one of them will get up in front of the class alone to do motions. My one boy with autism got up in front of the class with me and grasped my hand and proceeded to dance around. He followed the motions of his classmates too. Another girl with severe autism came up and flapped her hands excitedly to the music and didn't want to sit down. A few of them would come up when it wasn't their turn because they wanted to try. We did that song for almost a month.

Another time we did a freeze dance song and one boy with autism was holding my hand while he folded himself in half so his head was down by his knees and he was dancing without looking. At first, I was confused because I thought he was not comfortable. Yet, he refused to let go of my hand and he was swaying and moving with the music. He would freeze at the appropriate time too. I realized he was enjoying himself and he didn't have to look at anyone in the process. Okay by me.

One girl wears a football-type helmet. She has seizures and also has self-injurious behavior. She doesn't talk except a word here or there. If I sit next to her, she stares at me intently, a little too close sometimes, but she keeps a rock-steady beat if she claps or taps. She laughs when she gets a turn for special conducting or an instrument-she loves music.

Another student was uncontrollably loud and angry when he first came to class. He has been sitting respectfully and calmly because he saw the routine was always the same. His impulse is to get up and run around, but he waits patiently until we do our movement song. I keep all of the songs in a particular order and he knows exactly when we will get up and move. As long as he gets to move and dance, we are good.

One of my friendlier students repeats everything I say. If I say "How are you?", he says "How are you?" He has a broad smile and such a happy soul. Sometimes he comes in and yells out profanity uncontrollably, which was disconcerting to me at first. But today at the end of class, he ran up and hugged me before he left. Such a doll.

The class has at least 7-9 aides and every one of them participates completely. I also have had speech, occupational, physical therapists coming in to see the kids in music too. This class could not have come to me at a better time in my life. Back in August when I started noticing differences in Connor, I asked this special ed teacher's advice. She didn't sugar-coat anything, especially as her previous job was an early intervention evaluator for the state. She told me point-blank, "This is going to be a hard life and you are going to have to find your voice. Your son is too little to help himself and you have to do it now." She comes in and checks on me every few classes. She asks about my son, gives me encouragement and she is careful to be honest. She will answer any question I have. And they all remind me how important my gift of music is to all of the kids and I finally feel like I am gaining some purpose. I have to believe that this class was given to me for a reason, if nothing else to help me prove to myself that I can do this.

So, we celebrate the triumph of a longer glance, a handshake, a tiny voice taking wings for the first time-and there are many days when I leave that class feeling like I am walking on air. They bolster my spirit and many of them are giving me what little they can offer. You cannot ask for more than that sometimes. Music seems to find a place deep in the soul and connects on a level that cannot be done in ordinary conversation.

My quote sitting on my desk reads:

Every day brings new challenges, therefore
we accept them
we overcome them
we learn and persist

Friends who are blogging for autism-please visit and support them too! And if you would like me to include your blog, please let me know.

Jeni

Mary

Friday Feast One Hundred and Eighty Six

Appetizer
Invent a new flower; give it a name and describe it.

I would invent a flower that never dies-without water. It would be called the everlasting and it would belie the fact that I have no green thumb.

Soup
Name someone whom you think has a wonderful voice.

Well, I have been teaching opera to my students this past week and while I am listening to unparalleled voices such as Frederica von Stade; my constant reminder that one of my best friends and former colleague Shannon has one of the most beautiful voices. I miss hearing her voice every day.

Salad
On a scale of 1 to 10 with 10 being highest, how clean do you keep your car?

Well, I would say 5. I washed it today, but it needs to be vacuumed. I like to keep it fairly clean and uncluttered, but it is tricky as a traveling teacher.

Main Course
How do you feel about poetry?

I love poetry! I love reading it, writing it and surprisingly, I am feeling better about sharing it!

Dessert
What was the last person/place/thing you took a picture of?

We just returned from a trip to the toy store. Ian was picking out toys for Connor. Knowing his birthday is coming next month, he was scouting out what toys he would like. I took several cell phone pictures of toys for his "list".

Autism Awareness Day 4: Typical

My oldest son, Ian is a brilliant and typical three-and-a-half year old boy. Brilliant, because I am just that biased. Typical because we have all encountered three-year-old children and they can be a lion or a lamb. He is also known as a typical sibling, meaning he does not have autism. In my own mind, typical is a PC way of saying normal. Meaning my younger boy, Connor is apparently atypical or abnormal because he has autism. I hardly ever call Ian typical, but that is how most parents, doctors and educators refer to the unaffected siblings.

Ian is a creature of habit, not unlike myself. We enjoy routine and knowing what comes next. He is a bit shy like me-maybe not as painfully as when I was a child, but it's there in bigger crowds. He loves books, Star Wars and Backyardigans songs. He is even learning how to read at the tender age of three-a boy after my own goody-two-shoes heart.

He is also has the patience of a three-year-old (not much) and the independence of a three-year-old, politely declining to sit in time out or plastering an Oscar the Grouch face with the best of 'em. He can drive you up a wall and turn around and kiss you and say, "I just love you, Mommy" and my annoyance dissipates.

With Connor, Ian has had it the hardest. After school routine changes day to day depending on Connor's therapy appointments. Sometimes he is left out of the sessions to play on his own, which he finds rightfully unfair. He tries joining in the occupational therapy sessions and finds it pretty boring to roll a ball back and forth while trying to get Connor to play and say someone's name. Asserting independence is one way he gets a bit of attention for himself and also reminds us how important he is. Sometimes Connor is just a bother. Sometimes he surprises us by reading to Connor or helping him with a task.

One reason I actually knew something was amiss with Connor was because of Ian. Ian was a sponge, especially in the verbal department. He talked correctly - no baby talk- and learned words almost instantly. He knew colors, numbers in English and Spanish, could do puzzles, sat for books-on and on. When Connor took longer to talk, we realized that we had to learn a new way to teach Connor language. When the little repertoire of words he did say disappeared, it was a huge indicator of things to come. If I didn't have Ian as a reference-granted he was setting the bar high for communication-we might not have figured out Connor's situation until much later.

We love Ian so much and it has been hard on us to find the time for him, for Connor, for both and for all of us together. He truly benefits from having some time with each of us where we can appreciate and love him. Uncle Mike has been teaching him some great things about being an older brother and I have every confidence that Ian will teach Connor great things about life and love-as much as he is already teaching us.

As the older brother, Ian usually leads the toothbrushing sessions in the evening. He will prepare Connor's toothbrush with a miniscule drop of toothpaste (Ian's own brush is usually laden with blue berry paste-yick) and gets Connor to come in and brush. This afternoon, I took Ian to his dentist appointment, where he received a 100 % cavity-free sticker and was complimented on his above-average behavior. I promised the grandmas some photos of the dentist appointment-so enjoy!

My closing point is that I hope we are all atypical. I hope that we are all fabulously gifted in our own way, autism or not, each of us brings something tremendous to life. And both of my boys have contributed to giving us a life that is anything but typical. It's called being blessed.

Autism Awareness Day 3: Stimming!

Sometimes we all do things to calm us down. Some of us grab a cup of tea and put our feet up on the couch to decompress after a long day. Others exercise, some take a hot bath or read a book. For persons with autism and developmental disabilities, it takes a bit more to either regulate (calm) or stimulate the nervous system. This behavior is called "stimming" or self-stimulatory behavior. For those who enjoy linguistics, the word autism comes from "auto" meaning "self". And the troubling part of this disorder is that persons with autism seem to be locked inside his or herself and disengaged from others. Stimming provides some respite for these individuals when the environment is more than he/she can handle.

You cannot look at a particular stimming behavior and say "Aha! Autism!" because every child is different. Some of the more common stims include hand flapping, rocking, watching lights, spinning wheels and even making vocal sounds. But, they run the gamut and I imagine each child you meet will have a slightly different way of stimming. Some kids may stim every day; others will stim when a situation is particularly stressful or out of routine. For example, my son really does not hand flap. However, whenever we go away on vacation, the flapping returns and I spot it immediately. Once we are home, the flaps seem to disappear, unless he is very excited about something. He's like a firefly shining bright with wings delicate and strong-first you see it and then you don't.

So, what does stimming look like? Well, you could go to You Tube and finding dozens of home videos on autism and stimming. My son, back in September, was walking in circles constantly. At home, at daycare, at the park. I watched him one evening while making dinner for about 3 minutes before I decided to grab my camera and see how long he would circle. In this particular video, including the off-camera time, he circled for about 15-2o minutes, until my husband came home and literally stopped him. You will notice he is not distressed and he even occasionally stops to see what my older son is doing. (yes, I was clearly annoyed with Ian about something on the computer and he was clearly frustrated while I was busy immersed in taping-not my best parental moment, sorry Ian) Connor's circle behavior went on for quite some time-including during his diagnosis appointment. I was puzzled by it at the time, but I understand it a great deal more now than at the time of this video.




You might laugh, but it seems like my son tried out a few different stims before finding what worked for him. In the video, you see a little Lightning McQueen car in hand. Connor ALWAYS has a car in hand. He is like Linus with a blanket only Connor with a car. And this has always been since he could hold a car. We learned not to take away the car. We learned to keep a little car in the carseat, in my purse, in Tom's pocket. At our friend Cindy and Rick's house, Connor plays with a little red Ferrari model car almost the entire visit. (and just to show you how much Connor is loved and appreciated for who he is - Cindy bought him a little Matchbox car for a party favor at Trevor's party last weekend. It didn't leave his hand all party long.) When Connor is tired, on overload or just needs to be alone, he lays on his side on the floor and rolls a car back and forth. At Christmas-probably the most stressful day for him-he went straight to the table for breakfast, while Ian was busy opening Santa presents. After opening a few presents, he disappeared into another room with his car and quietly rolled the car-just taking a breather from the chaos. We see this several times a day now. People wondering about birthday presents-you have your answer.

Another stim for Connor is going into the backyard and rolling a Megablok fire truck back and forth on the patio. This also was a clue before he was diagnosed-he followed a particular route between the back door and the gate. The ladder on the truck had to be exactly positioned and his little car was safely tucked inside. The problem began when my older son, Ian wanted to play with "crash" with Connor. Ian, on his tricycle or scooter, would follow Connor, speed around him and crash into the fire truck. Connor would scream, even hurl himself on the ground in complete frustration. He would then get up, readjust the ladder and return on his path. Ian, in his defense, was really trying to find a way to play with his brother. None of us quite realized how much Connor needed that fire truck path to remain unobstructed and how important it was for that ladder to be just so. Connor still plays with the fire truck, but has discovered climbing the swingset ladder (car in hand) and going down the slide to be pretty cool.

Do we stop this stimming behavior? Do we allow it to go on and on? The answer depends on the parent. Personally, I allow my son to stim if he needs to, most of the time. Who am I to take something so calming away from him? It's just a part of what he chooses to do and who he is right now. Research says that stimming can inhibit learning-but if kids are allowed to stim following engaged activities, some are able to attend to task knowing they can stim afterward. This happens in my special education music class with one child who likes to rock. He is allowed to rock during the movement songs, but he must sit still during instrument time and quieter songs. He is a delight.

That all being said, my first encounter with someone looking at my little 17 month-old son stimming-circling like a whirling dervish. You know the look, it's the "what's wrong with this kid-he's a weirdo" look. It broke my heart that a baby could invite that kind of reaction. I didn't say anything because I didn't know how. I am just waiting for my next chance because I know what to say now. But that look broke my heart for days because I didn't know a darn thing about autism or stimming. I didn't know how to educate a stranger, when I wasn't sure what I was seeing myself. And maybe my inability to react made the heartache that much deeper.

Another time, we disembarked our plane in Phoenix after a long trip flying from New York. Connor, trapped in a car seat on an airplane for hours, had a taste of freedom in the terminal as I allowed him to walk on his own. He trotted, hands flapping so fast I could feel the breeze. People were enamored of him-waving hello as if he was waving to them-my son was flapping joy to the travelers around him. Thank goodness for the good-hearted strangers who reminded me what a tremendous little boy I have.

Here's something to keep in mind-kids do have quirky behaviors-all of them. They do things that make sense to them and not to us. My older son Ian, a smart boy on all counts, does not handle crowds and chaos very well. In soccer games, amid the rush of boys following the ball, he stood there playing with his ear and sucking his thumb. I knew he was uncomfortable and he was trying to find a way to deal with the discomfort. I clean the house when I am stressed. It calms me down. Thomas taps rhythms. Maybe we are all stimming in some way.

So if next time you notice someone needing a moment to decompress-it's okay. Okay for everyone.

Autism Awareness Day 2 : Welcome to Holland

A reminder that April 2 (today!) is World Autism Awareness Day! CNN is doing extensive coverage of autism awareness, family stories and I encourage you to take a moment-have a cup of tea, put your feet up and watch an hour of coverage.

Also, please visit a few friends with great stories.....Jeni, along with me, will be posting and honoring autism awareness during this month. Raven has included a truly affecting story about a boy and his flute. Look for more to come.

The diagnosis of autism is life-changing. You are never the same once you are told that your child has autism. Some are devoted to unlocking the mystery, to beating down walls and finding the child inside. Others simply accept, but still work just as hard to make connections. Parents experience grieving-it takes time to accept that your child is different. It takes time to accept that life will be more challenging. And it takes some time to realize that life is just as rewarding as when they were born.

When I was struggling to find my acceptance with Connor's diagnosis, I found this brilliant writing on special needs children. It is not just relevant to autism, but it gave me such perspective. I even remember including it in one of my family emails. And as I reread it this evening, I am in tears while I type. Because harbored deep inside, I still have some grieving left to do.

Honestly- I don't know the proper etiquette of crediting other people on blogs-but it is copyrighted and Emily Perl Kingsley, where ever you may be-thank you for this.

Welcome to Holland

c1987 by Emily Perl Kingsley. All rights reserved

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

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

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

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

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

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

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

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

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

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

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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.