Autism Awareness Day 30: Closing Statement!

I'm dancing
I'm leaping
I'm skipping about
I gallop, I grin
I giggle
I shout

I'm Earth's many colors
I'm morning and night
I'm honey on toast
I'm funny
I'm bright

I'm swinging
I'm singing
I wiggle
I run
I'm a piece of the sky
In the circle of sun.

-Rebecca Kai Dotlich

Thank you to all who walked this journey with me and to those who will continue to walk with us. Connor is a boy with great promise-one of many.

Autism Awareness Day 29: My Unagi Half

Why don’t you talk about it,
I know there’s something on your mind.
Well you go on and have some chocolate milk
I’ll be waiting outside.
The last few years have been much harder,
Than we ever thought they’d be.
I know you hate it when I say I’m sorry,
But I’m sorry.

There was never a point in our love,
That I didn’t love you...
Not a point in our love.
I always did, I always will, I always do, love you still,
I always would, how could I not?
Just look at us baby,
We’re kind of perfect.

Well sometimes I get all wrapped up,
Cause I don’t know who to be.
But you know when to be my security blanket, and when to uncover me.
So let’s just sit out on the back porch,
And unravel everything.
Someday these will be our old days, let’s make them worth remembering.

There was never a point in our love,
That I didn’t love you...
Not a point in our love.
I always did, I always will, I always do, love you still,
I always would, how could I not?
Just look at us baby,
We’re kind of perfect.

I always did, I always will, I always do, love you still, I always would, how could I not? Just look at us baby, We’re kind of perfect.

-Kacy Crowley song (I amended the beverage line, naturally)

Thomas-I could not and would not have done the last 14 years without you. While we don't always pick the most perfect path or the smartest one, at least we are always walking it together and able to laugh about it most of the way. You have helped shape Ian and Connor into two little boys that everyone is immensely proud of and we definitely have unagi better than anyone else I know. I love you!

Autism Awareness Day 28: ASD Myths and Facts

I found this website to be very informative, since I often wonder if kids and adults with autism really care about the people and the world around them. It brings to light things that I have wondered about for quite some time. And it reminds me that I am dealing with a young child, yet this isn't a disorder simply about children. Children grow all too quickly into adults.

Myth versus Fact

Autism Awareness Day 27: I Get By With a Lot of Help From My Friends

Autism-coming from auto, meaning self. We could not do this by ourselves. The gracious gift of a terrific and supportive family, friends in town who take on all of us without batting an eye, friends from afar who email and call with loving words and friends whom I have never met, yet fill my blog with words of tremendous love and compassion-this is a gift that we promise to give back.

That is why we manage to keep going, chin up and strong heart. And yes, we don't always feel happy, we don't always feel connected. Yet, we find ways to mend and the thread is each of you who keep us together when we want to unravel.

Thank you.

Autism Awareness Day 26: Occupational Therapy

Connor has been working with Kristin, our occupational therapist. She deals with a lot of his sensory issues and also helps with the proprioceptive and vestibular needs. Initially, she gave us lot of sensory ideas, like squeezy pillow hugs, swinging around wrapped in a blanket, rolling up like a burrito and the trampoline.

Because Connor was removing his clothing on a regular basis, she included joint compression and deep pressure. With joint compression, we literally push his joints together in different spots on the wrist, elbow, shoulder, knees, hips and ankles 10 times each. Following that, we do deep pressure along the sides of his legs, the bottom of his feet, on his forearms, his back and shoulder blades and on his hands.

For awhile, this was working for a majority of the time. However, because we are teachers, (and I am NOT rubbing this in) we have more frequent vacations. My school district gives 2 weeks off each quarter, so the boys are home for 2 weeks with us. The transition between being home all day in a different setting and routine and then going back after 2 weeks to daycare from home wreaks havoc on our little guy.

We finally ended up brushing Connor's skin daily with a small surgical brush. This brush worked miracle of miracles because he has been keeping his clothes on and he doesn't scream when we do try to dress him. Plus, he loves the extra input. Kristin teaches us how to administer these techniques and then we include throughout the day.

Kristin also works on language while he plays. She has him play on the swingset and teaches us how to incorporate words while he is receiving sensory input. She also taught us how to watch for his sitting posture-Connor likes to lay on his side to play and some kids with autism have this posture or others that don't work the upper body muscles which can be underdeveloped. They also like to sit in odd positions, like the "W", where they are sitting on their bottom with their legs positioned out and away (very uncomfortable!). She also helps us understand when just rolling that little car back and forth is probably okay.

The best thing about OT is that Ian and Connor can participate together and Kristin allows Ian to join the sessions. Sometimes we ALL join the session to dance, do parachute or roll balls back and forth.

Autism Awareness Day 26: The Land of Mommia

"Mommy!"

"Yes, Connor?"

"CAAAR!"

"Cars are cool, Connor."

"Mommy!"

"Yes, Connor?"

"McQueeeen!" (repeat 10 times)

Enter Ian:

"Mommia? Do you want to play with me?"

"Sure, what are we playing?"

"Star Wars! Mommy, you can be Padme. I will be Star Wars Dude."

"Can I be Darth Maul?"

"No, Mommy, Darth Maul is a boy. You can be Jar-Jar Sphinx. He doesn't die."

"That's great."

"Mommia?"

"Yes, Ian?"

"Do you want to be Chewgabacca? He's the coolest."

"Isn't he a boy?"

"No, Mommy, you can be the girl Chewgabacca. Or you can be Burrito."

"Isn't it Greedo?"

"Burrito is a boy."

Back to Connor:

"Mommy!"

Tom: "I'm Daddy!"

"Mommy!"

"I'm Daaadddy."

"CAAAR!"

"DAAAADDDY!"

"McQUEEEEN!"

Back to Ian (playing K'nex)

"Mommia....I'm making a Star Wars ship. It's a Tie ship. "

"Excellent."

"Mommia...."

"I'm MommY."

"MomMY. Do you want to play freeze tag?"

"Sure, I love freeze tag."

"Okay, which guy do you want to be?"

"Huh?"

"Mommia, which GUY do you want to BE?"

"There are no GUYS in freeze tag, it's just it or not it."

"Mommy, you could be Star Wars Dude or the Good Darth Maul."

An audible sigh.


Kids with autism latch onto to certain things. Connor and his cars. ALL kids also go in obsessive phases too....where they LOVE certain toys or movies exclusively. I was that way. But WOW. My brain is on little boy car/Star Wars overload!

And yes, Ian calls me Mommia. Why, I don't know. Tom thinks it's fun-he calls it the "Land of Mommia".

Autism Awareness Day 25: Sign Language

I am working to get my quota in before Wednesday. So, be sure to read the previous post also published tonight.

My first encounter with sign language was back in New York while teaching music. My vice-principal Frank Annis (who to this day is still the example I compare the rest of my principals to....none have come close) is hearing impaired. He wears hearing aids, reads lips, knows sign language. Shannon and I would have him come in and teach "Let There Be Peace On Earth" in sign language to our students for our annual singalong. I learned quite a bit but I didn't truly appreciate it more than to enjoy how it fit with our music. Frank loved teaching our kids and I know if I asked him even now for advice-he would love to help.

Fast forward to Ian learning to talk. Ian, my verbal sponge and I researched the various ways to introduce words to him. Baby Sign Language seemed to be a bit of a fad-like a clicky little group and I didn't see the point. If I taught Ian to sign, would he actually talk or become lazy? So, I shelved the signing after seeing my word wizard work wonders.

Fast forward to Connor. Our two therapists both suggested sign language for Connor since he wasn't speaking much and his frustration level was code red. Again, I felt tremendous reluctance because I didn't think he would ever talk if he could sign. But, I shelved my own doubts and we worked on signing. It took a long time, but over Thanksgiving weekend, Connor actually signed for the first time on his own. The picture above is the "more" sign while Daddy plays with him.

Fast forward to last week. The speech therapist wants to see more from Connor, so she began working on the word "want" as in "want more" or "want car", etc. She showed him the sign for "want" and we did a hand over hand with him to help him form the sign. He was confused initially as she had him sign for each puzzle piece. She kept at it and had to sign hand over hand every time before giving him the piece. I worked on it a bit over the weekend and he did the sign prompted on his own, but didn't say "want".

I see the power of having a non-verbal way to communicate. I see how my son is learning so much more than if I berated him verbally with spoken words.

My friend Laura is studying sign language and interpreting. She has a son with autism and I have emailed her several times with questions on signing. She always, always responds with some terrific ideas and it has been a great education for me to broaden my viewpoint. She is also writing some tremendous entries about autism and I encourage you to please stop by and say hi. Everyone can use a new blogger friend and she is GREAT.

Autism Awareness Day 24: Speech Therapy

If you want an in-demand career that pays well, consider speech therapy. Getting speech therapy for Connor felt almost impossible-even with early intervention, the precious slots were filled.So, as green autism parents, we were calling our service provider and calling around to various speech therapists-only to have parents tell us that this is not uncommon at all. After several months, we finally got a speech therapist in February. Tom was about to put on his New Yorker, but we got connected before THAT had to happen. (lucky them!)

Sarah has been doing speech for several years and offers a lot of ideas. Of course, much of her sessions are Connor-led, which I honestly don't know how productive that always is. Lately, he has been working on puzzles with her almost exclusively-she could not get him to engage in a book or any other activity. Sometimes I just want the therapists to come in with "Here's what we're doing today..." but apparently some prefer to see what the child is doing and to go along with that. As a parent, I would like to see a bit more structure and activities (because I am a neurotic routine and structure monger when it comes to my kids-to a huge fault) because Connor will do cars and puzzles till the cows come home. Yet, it does work as we see progress each time.

At first, she thought perhaps Connor was apraxic and not autistic, considering some of his social skills and eye contact-but since she had not seen him until a few months after he started therapy-it was harder to see what he was coming from.

Apraxia is a confusing neurological speech disorder between the brain and the mouth-where what is perceived to be said is not what actually comes out of the mouth. Apparently, words are inconsistently pronounced wrong (unlike a speech impediment where the same sounds are consistently wrong). She gave me information on it and I consulted with another friend who is a speech therapist. The list included "doesn't like food", "has trouble eating". I also experimented with Connor, who does repeat sounds and phrases at times and he pronounced all of his letter sounds and words correctly every time. I knew apraxia was not it and my speech therapist friend confirmed my feelings.

Yet, Sarah has observed his car rolling and a few hand flaps. She finds him to be intensely focused on cars and moving objects and hard to steer him out of that. She does work with him to ask for "more" and "want more" is this week's work. He is a little stumped on that one, but he is signing "want", not saying it. (hooray for sign language!) We also made a photo book at her suggestion with pictures of Connor's family, routine and things he likes and recognizes. He enjoys that book (especially the picture of his Lightning McQueen car and the picture of Mommy's car-opens up to those two every time) and we can actually get him to respond to it.

Our speech goal is more two-word phrases. He is about six months behind in language and where he should have almost 100 words by now, he has about 20 that she counted.

But remember, 20 words is outstanding. Some parents wait forever to hear a word. Some never hear the word "Mommy" or "Daddy". I do not know what that would be like and I cannot offer anything but an extended hug to those parents and children. Yet, I do know that love is communicated in many, many ways, not just by the words we say. That is one lesson Connor has taught me.

Autism Awareness Day 23: Ode to our Visitors

Solitude of togetherness

Neither of us has to speak,

yet you know my inner instincts

I've got your back if you've got mine

And remember that while our bark is worse then our bite

All you need is love.

Zoe and Lyra, come back anytime! You put a lot of fun into our weekend. And Connor learned the word "Puppy"!

Autism Awareness Day 22: Developmental Therapy

Connor began his therapies in November and December of last year. We work with Julie, a developmental specialist who works with children ages birth to three years old. Her job is to play with Connor and teach him language and coping skills through activities.

She comes with a bag filled with books, puzzles and toys. At first, Connor didn't interact much or say much. She is an extremely patient person, gently repeating words in a clear and simple manner as he plays. Now, she walks in and Connor makes a beeline for her bag to see what she has brought with her.

What I really like is that she will bring the same toys or puzzles each week, so he works on the same skills. For example, she had a wooden animal puzzle that made sounds. Connor liked the kitty sound (sounding more like a kitty after a brawl with ten other cats-YOWL-but he liked it) and so he would only play with that piece. He had a lot of trouble fitting pieces in or even trying the right piece in the right spot. She continued to bring that very same puzzle week after week, until one day, he began putting the pieces close to the right spot. Then, fitting them in the spot. Then asking for "more" pieces. Then "more, please". Then imitating the animal sound (he rarely points or says the animal name, just the sound it makes). It is serious progress for him.

She also has some cars and she gives him some new ways to play with the cars and helps him sit up to play. Connor also enjoys stacking cups game and her train set. She always tries books with him, but it is still difficult to keep him attending to tasks like books. One task he loves is bubbles. He is climbing on her lap anytime she breaks out the bubbles.

I learned a lot of how to talk to Connor in a much simpler way, where I could say a word or two instead of overwhelming him with multi-step directions and full sentences.

Julie constantly writes encouraging weekly reports and never fails to spotlight his progress. I think he makes the most progress from this particular therapy because of its stability and her consistent manner of speaking. I can sit back and watch him play or participate. She is always prepared with a variety of activities.

The kids always give our therapists a huge send-off when they leave, waving and calling goodbye until they drive off. Ian's classic line " Are you leaving?" indicates that he isn't all too impressed with Connor's extra attention.

Friday's Feast One Hundred Eighty Eight-On Saturday/Almost Sunday!

Appetizer

Name something you would categorize as weird.

Weird....hmmm. I think it is weird when people miss you yet do not contact you at all.(I think I have to be included in that!) I think it is weird that my son finds ketchup to be a staple at the dinner table. I think it is weird that I love having dogs here in my house yet I don't really want a pet. I think it is weird that my son says he picks his nose because he is "hungry".

Soup

What color was the last piece of food you ate?

I am drinking red sangria with apples and strawberries. Delish!

Salad

On a scale of 1-10 with 10 being highest, how much do you enjoy being alone?

It's terrible, but 10. I love being alone. I love it. I also love being with my family (a 10 there too and a disclaimer of sorts before I get into trouble!)

Main Course

Fill in the blank: I will _________ vote for ___________ in _______.

Ah, ah, ah! I am not engaging in political discussion with anyone except my husband. I will say that I will always vote for a person in a presidential race! :)

Dessert

Describe your sleeping habits.

I used to sleep on my back looking at the door. An OCD thing of sorts. I was petrified that someone was going to come in and I had to be able to SEE if they were coming in. After being pregnant, I learned to enjoy lying on my side to sleep. Interestingly, my husband used to be very fidgety as a sleeper. Now he sleeps almost like a rock and I have turned into a fidgeter! Ah!

Also, I do not ever, ever remember my dreams. Only one time that I can recall when I was running a high fever as a kid and I thought there were clowns were swinging off of trapezes and grabbing at me.

As a mother, the sleep I need requires NO ACTIVE BRAIN CELLS.

Autism Awareness Day 21: Sensory Processing Disorder

During our evaluation in October, Connor was seen by two psychologists in a room filled with toys, a playhouse and all. He would be observed as he played and interacted with the adults.

Connor didn't talk at the time, yet he would come over to me and literally slam his head and body into me as hard as he could. A few times, he would actually head-butt me with his head and laugh instead of cry. (I was ready to cry-it hurt!) He would wriggle about when held, never content to sit still.

The psychologists would murmur things as they watched and wrote. Occasionally, we heard, "Oh, that's so proprioceptive" or "Yep, vestibular" and "oh, there's some stimming". Tom and I were in a wash of new lingo-which has taken us so long to understand.

Proprioception comes from Latin and means "one's own". It is the sense of the relative position of our body parts and it is regulated internally. It provides the sense of where you are in space. Believe me, it made NO sense to me at all. How the heck do you NOT know where you are in space? Connor didn't know. So, he would slam his body into the couch, onto the floor, into us to feel where he was in space. His body wasn't telling him or telling him enough. I still have trouble relating to this one.

Vestibular is your balance system, mainly regulated within the ear (cochlear). The vestibular system gives signals to control the muscles-including eye movement and muscle motion to keep you in place. Connor's vestibular system needs movement like spinning, swinging and upside-down movements in order to be regulated. A clue why Connor never enjoyed sitting still.

Tactile is the sense of touch, through receptors in the skin that indicate pressure, temperature and pain. Connor is both hypo and hyper-sensitive. This has challenged us to exasperation many days.

Olfactory is the sense of smell, including being able to discriminate and respond to different odors. Connor doesn't seem to be bothered here so far.

Oral is the sense using one's mouth. Some kids respond negatively to different textures of food or will mouth objects or eat inedible things. Connor likes to eat food and we haven't experienced too much trouble here.

Visual is sense using your vision to process and respond to what is seen. Connor never enjoys looking at books with others or pointing to things in the distance. He still seems to have the baby-sense of not realizing an object that isn't in front of him. (except CAR, of course)

Auditory is related to sounds and processing what is heard. I think the combination of crowded, noisy stores with both visual and auditory overload overwhelms both me and Connor.


Sensory Processing Disorder (SPD) is when the neurological process of sensory integration is disrupted-whether it is in the intake of information, the organization of information in the brain or the output-which impacts behavioral, social, emotional and learning development.

We ALL have some kinds of sensory dysfunction-things that bother us more than others. But for children and adults with SPD, these things can affect the quality and routine of daily living.

So, how was Connor different? He needs extreme input in the vestibular and proprioceptive areas. If we squeeze him hard, you can feel his little body relax into you, as if it is what he needs to be peaceful. Lately, he lays across the swing and goes back and forth on his stomach, serving to help his vestibular needs and proprioceptive needs too. He loves being upside down, loves to be spun around until his eyeballs wiggle, loves anything fast and precarious. Pushing heavy baskets, large trucks and chairs about also helps the input. He is actually calmer following heavy work or jumping on a trampoline. Many times, we swing him around or bear hug him so that he can remain calm. He seeks it out. At the diagnosis, he tried to move a huge stack of chairs across the room (that prompted a great deal of writing and comment from our evaluators!) and we also use the laundry baskets for him in the house-whether he is pushing them around or riding in them.

But the other problem was his clothes. Basically, he hated pants and diapers. He wiggled out of them at any and every given chance. At home, at daycare. We finally began to put him in onesies all the time. From there, he would take his diaper off under his pants. He would be sound asleep in his crib half-naked. About a month ago, he began screaming if I tried to put a shirt on his arm to dress him. Screaming like I was hurting him. The OT had us learn to administer deep pressure and joint compression. Joint compression literally moves the joints together and deep pressure is like a deep pressure massage on the pressure points. On his feet, I could push until my thumbs ached and he doesn't seem to respond. Yet, on his legs and arms, he squirms about. Finally, we resorted to brushing his skin with a surgical brush and that has finally worked to keep his clothes on without tears. So, his tactile sense is completely askew-ranging from unfeeling to light touch freak-outs. Another example is our backyard. Anyone who has been in our backyard knows it is a minefield of thistle-type weeds with sharp points all over them. No one I know can tolerate walking barefoot on our lawn, yet Connor will do it all day long without pain.

He doesn't handle certain stores well if they are particularly crowded or have flourescent lighting. Jo-Ann craft store is one that I will not bring him to anymore. The first time we went in, he screamed inconsolably like I was hurting him, until we had to leave. No snacks, no drinks, no hugs would do. Another store is Costco. I have taken him there three times and I will not do it again to save my sanity and his. Sometimes he handles the grocery store well, sometimes if it is crowded-no one leaves unscathed.

I do notice that he appears to be very auditory in his learning. He will listen to music and to voices and repeat. He can say the sounds of animals upon hearing their names, but he doesn't seem to recognize them visually. That would be more of how we learn over a real sensory issue. I am a visually-oriented person, as is my son Ian. Tom and Connor both seem to be much more auditory. But I digress.

Connor is a risk-taker. He doesn't have a natural reflex to protect himself from heights, from falling. You or I might put our hands out to break a fall. Connor doesn't. He is learning in therapy, but it is one area that needs tremendous work.

SPD is not a medically recognized disorder. It will not be covered by insurance should your child have it. Children can have SPD without other neurological disorders such as autism, BUT almost every child with autism has some form of sensory disorder. I personally wonder if some of our illustrious ADD and ADHD friends are not misdiagnosed and instead have a form of SPD. Some of these kids would do well to have a trampoline in class to regulate their system before sitting down to do some work. I wonder....

So, what things do we do to help Connor along? The trampoline is one. The swingset is another. We also use the exercise ball. My wonderful mother-in-law made him a weighted blanket to increase the pressure on his skin at night to calm him down. I find that if he awakens in the night, I simply cover him back up and he returns to a good sleep. (thank you Sheila!) Some of my students last year wore weighted vests. I never had a clue (and didn't have enough of a clue to ASK) why they had to wear these vests. They would ask to remove them and the aides would say NO. Finally, I discovered that the extra weight gives input to the nervous system and helps to regulate and calm them considerably. Another game is called Burrito, where you roll Connor up in a blanket roll and allow him to figure his way out. Truthfully, I would HATE to be rolled up in a blanket-how claustrophobic! Yet Connor AND Ian both cannot get enough of this game.

A terrific book that I would recommend to ALL parents of any child-not just SPD kids or kids with autism is a book called "The Out of Sync Child", written by a music teacher (alright!) and gives a terrific outline of this disorder and how to develop a way to put yourself in their shoes and a way to be more patient. She also wrote activities in the book "The Out of Sync Child Has Fun" with a wealth of great sensory ideas for ALL kids. Ian loves all of the sensory play as much as Connor.

So, think about how you might be sensory-challenged. Ian doesn't like crowds and he still sucks his thumb (working on it!). I don't suck my thumb, but I freak out if the smoke alarm goes off-I literally get very panicky and if it does sound, it is like I am frozen in place. What's your sensory overload point? We all have one! Imagine a kid with a ton of them!

Here are some links on SPD also known as Sensory Integration Disorder.

Sensory Processing Disorder

National Autism Association Link

SIRRI Arizona

Health A to Z on Sensory Integration Disorder

Sensory Processing Disorder Foundation

Wordzzle 10!

The words for this week's ten word challenge were: pleasant, fluky, desperation, penumbra, hoarsely, triumph, burden, colander, Kermit the Frog, lavender And for the Mini Challenge: avalanche, masterpiece, yellow, alligator, thieving

Here's my MegaWordzzle take:

Kermit the Frog, a normally pleasant character, hoarsely pleaded amidst his avalanche of desperation for someone, anyone, to remove this penumbra (aka Miss Piggy), such a burden on his primetime masterpiece. The flukey pig, with a penchant for lavender and yellow, finally took up with a thieving alligator that used a colander as a hat. Kermie quietly celebrated his triumph.

Autism Awareness Day 20: A Glorious Gift

He is Himself
for Connor

As with any child
There is glory in small things
He's not a label after all,
Not an "ism"
He is himself
Unique, special
Looking for love
Just like the rest of us
Autism is a part of him
But it isn't who he is
Who is he, then?
He is his mother's son
His father's boy
His brother's friend
He is his own glorious and beautiful self

And what more could we ask?

-Katherine E. Rabenau

Raven: Thank you for this gorgeous poem and allowing me to share it.

Autism Awareness Day 19: Sigh!

Connor has been having some tremendous weeks and lots of talking using actual words. Tonight was a little more trying for our little monkey.

Tom's school has a carnival each year as a fundraiser (an Arizona thing apparently-I cannot see NY schools doing this!). It is really fun, with food, bouncers, games, a fire truck and the best part-a Medivac helicopter.

I brought the boys down and as we were walking to the school, Connor was on the sidewalk and veered off to cross a busy street (I was right next to him, so he didn't get close to the street, but he was full tilt ahead). He was unhappy that I made him walk on the sidewalk. We had to wait on line for tickets so we could buy food, which made both Ian and Connor pretty unhappy.

Connor, after eating his dinner, got up and ran for the playground without looking back. I had to grab him again and again, he was not a happy child. We headed for the helicopter, which he loved. He walked around it and was happy to climb inside the cockpit too. Ian also sat in the cockpit and proceeded to ask the pilot about every single button on the console. He was most interested in how to turn the helicopter on and off. Another pilot later explained the difference between wings and blades and how helicopters are different. I might have a pilot and a race car driver on hand. (someone pass the sangria)

Anyway, the crowd of people was a little too much for both boys. Connor-in his genuine toddlerness-wants to run free, unconfined. He also becomes much more prone to meltdowns. We should know better, but we did want him to be able to see the helicopter and truck up close. And that he did enjoy.

On a great note, we are dog-sitting for my friend Julie. Her dogs are just the prettiest and sweetest dogs. Her one dog is like my shadow, following me from room to room. The boys are thrilled too-Ian was tossing a ball with them, handing them their rawhides and helped me take them for a walk. Connor tried feeding the dogs his juice cup, which Lyra was very happy to oblige him, even if she didn't get any actual liquid. Zoe also sat with us on the couch while reading books. I am exacting revenge on the neighborhood dogs who resound in chorus each evening. I finally gave them something to bark about.

Hopefully Connor's day will improve tomorrow. We don't plan on any serious outings, so he should be okay.

Autism Awareness Day 18: Sensory Infants and PPD

Connor was always very different as a baby, before all of the signs really appear. Of course, he was different from Ian-which as parents, we didn't catch on that what works for one doesn't necessarily fit for the other.

Connor was in constant motion-not content to lie down in our arms and rest. He had to be upright and he had to be bounced or patted on the back. If you weren't patting him with great effort, he was unhappy. He was so little, so we were constantly afraid we would drop him or hurt him. He was happier when we were holding him and walking. Tiring for parents who are sleep-deprived and just want to sit in the comfy rocker with our feet up. Connor would have none of that.

Even now, Connor climbs on us, climbs off, climbs back on, climbs off. He never seems to feel completely content just sitting still.

Ian began sleeping through the night around 3 months old. We had to learn the hard way with him, but a few nights of tears and he was a great sleeper.(until this year when he realized the art of procrastination) We began to work with Connor on sleeping through the night a little later-he would wake up constantly and be up very early. Having him cry and self-soothe was a nightmare. It basically didn't work well for him, but around a year old, he started to sleep through.

Tom has often said that he had a really hard time bonding with Connor as an infant. He was a tougher kid to figure out and I found myself defending Connor more often because almost everyone (not just T) seemed to pick Ian (who was admittedly much easier) to play with over Connor. I honestly felt like Connor wasn't loved as much as Ian was (warped, I know!).

So, these seemed like small beans at the time. We both figured that Connor would settle in and once we knew him better, it would be easier. Honestly, it hasn't gotten easier until this year, now that Connor is able to communicate a bit better.

All that being said, I want to highlight two important issues. First of all, there are some clues in infancy that masquerade as colic, as difficult and different child stuff-but looking back, it makes all the sense in the world. I believe that Connor has had sensory problems from Day 1. It has always been here. I am grateful that the psychologists asked about about his infancy and explained how studies are being done on infants and autism and sensory disorders. She said that many of the problems we had were not uncommon for children with these neurobiological disorders.

Secondly, as a parent of two children-that transition is a whopper. And when you are sleep-deprived, in a post-pregnancy form (I was not one of the lucky gals to regain my figure after a few weeks-I am still looking for it! lol) and you are dealing with an infant who doesn't seem to fit into the family routine and scheme, not to mention the hormonal changes for women following pregnancy-it can set you up for postpartum depression.

I have shared my postpartum depression here and it took me several months to realize it and I have had depression issues for most of my life. Having some help, getting out with a friend and just talking out the frustrations can make an enormous difference. I have been much better for over a year now but I usually discover it creeping back almost surreptitiously. In December 2006, I hauled myself into the doctor, two crying children in tow and you didn't have to be a genius to see what was happening.

Be proactive to see when those parents need a boost, need a friend and need a break.

Offer to help with a difficult infant too. Imagine it 24/ 7!

And keep a lookout for more information on sensory disorder and autism in infants. I think it will be interesting to see what might be discovered.

Autism Awareness Day 17: MOMMY!

We don't usually enjoy waking up as early as Connor does.

But this morning, we woke up to the sonorous "Mommy!" "Mommy!" "Mommy!" repeated in all its delight.

For the very first time, he called me when I wasn't actually there.

The other great thing is when I am driving in the car. Connor will call "Mommy!". I say, "Yes?" He says "CAR!" and I make some agreeable sound and he then says "Lightning McQueen" (mumbled) and this goes on for the entire car ride home.

He is a little obsessed with Lightning McQueen.

I know I am very behind on posts.....I will do all 30, as promised. We have been busy with school, work, work and house work. And just decompressing a bit.

I am off to tutor 6th grade math now (yes, I hear your laughter, those who know me well enough to know that I should be tutored in math, not the other way around). The poor child is me 25+ years ago, eagerly confused.

Autism Awareness Day 16: Pets and Animals

It is uncanny how some children connect with animals in such a kindred spirit way. We don't have pets and many have read my motto about "No Pets", following our two ornery cats, Linus and Maven. I like animals, but I tend to enjoy other people's pets instead of having my own.

Connor enjoys animals and gravitates to pets in several households. Tasha and Jo-Jo are the two dogs at daycare and he has to greet them and say goodbye to them. He especially loves hearing them bark when he arrives. Sam is Uncle Mike and Aunt Terri's cat, who is not particularly fond of children, but has allowed Connor to stand close by-petting is not usually permitted, but Connor seems undaunted. Charlie and Sadie are Cindy's two dogs who are really great with Connor, plus her cat Fitz and Sophie who allowed Connor to pet them and played with him over anyone else.

Sometimes I think it's an alternate form of communication. Pets don't have the easiest means to communicate and certainly kids with autism don't either. Maybe that is their secret connection and they just get each other. Maybe pets know when certain kids need a little more TLC. Who really knows.

There are autism service dogs who work with children who have safety awareness issues, one who will unlock the door and leave their house to wander, give the kids something else to do besides stimming and provide a lot of unconditional love. They also give the parents some peace of mind that their children are a little safer. It's not foolproof, as you will read in one of the links below where one service dog was not appropriately trained or just wasn't a good match for this type of work. I imagine that certain dogs, not necessarily service dogs, with behavioral training could do wonders for children with autism.

So, why do I not run out and get Connor a dog?

Selfishly, we do not have the time to add a dog right now. Our schedules are inconsistent and so much happens during the week between working two jobs, therapies and finding downtime. I don't feel we could all give a dog what he/she needs to be happy here. I worry that I don't even give my boys enough time as it is. For now, we are happy to visit our pet friends and there are plenty. Julie's cute dogs are coming to stay next weekend, so it will be great fun. Kind of like being an aunt to a dog-they go back home after awhile.

Here are a few websites that have information about service dogs for children with disabilities. Never underestimate the power of a pet to enrich a child's life. I promise my kids someday, we'll have one too.

And p/s, one of the best things I've read today....it's not autism, it's AWE-tism. How cool is that?

4Paws for Ability

Autism Service Dogs of America

North Star Service Dogs

Article: Program Uses Dogs to Help Autistic Kids

Chicago Tribune Article about Service Dogs and Children with Autism

More information on Autism Service Dogs

Autism Awareness Day 15: 6th Graders with a Heart!

I teach three 6th grade classes at one of my schools. Not a huge fan of teaching pre-adolescent kids, but I was pleasantly surprised at this bunch. They actually participate-sometimes there is a quotient of goofiness that the boys must attain that is not unlike my Kindergarten boys, but they try and do put some effort into what I ask them to do. Some is better than none.

Anyway, I am working on some African music with them and I mentioned to one class that I have a busy schedule, so my time to work with them outside of class time is very limited. They asked how many schools, which schools, what grades at my other schools. One kid said, "Wow, you must be tired by 4pm." I laughed and said that my day was by no means over at 4pm. They look astonished and I said that I have two little boys. Another boy said, "But that's easy, right?" So, I was honest with them and said that my little one has autism and he has to have therapy after school on most days. So, my schedule is off the charts busy during the week.

They asked about autism and what it was. I explained it for them and one girl said that she has a girl who has autism that is on her softball team. She said that the girl knows how to play but she sometimes has trouble focusing and gets some outs because she gets very fixated with all of the directions or she runs past the bases. My student said that they help her when they can and no one gets too upset about the outs.

My students were trying hard to understand what autism was and what does he do? I told them about how it is harder to communicate and be social or appropriately social. I told them that some things are very sensitive, like their hearing or textures. I explained that we have to teach Connor in a different way and help him build his communication so that he doesn't get upset when he isn't understood. They were really cool about it and a few continued to tell me a few stories about kids they know with autism.

It was a great discussion that had nothing to do with music. And if it means one or two of them stop and consider how to treat a kid with autism, then I am happy. Planting the seed and see if it grows.

Autism Awareness Day 14: IFSP

IFSP is one of a thousand acronyms that become part of your autism-speak. (honestly, it is mind-boggling how many there are!) It means Individualized Family Service Plan and together with the support coordinator, therapists and parents, goals are set for the child to achieve within a set period of time. For us, the goals are worked on for six months and then re-evaluated.

We had our IFSP goal evaluation on Monday with our support coordinator, our developmental therapist plus Tom and me. Connor met a few of his goals, including increased use of signs and words. Some of his goals were emerging and so we kept them ongoing or modified them if we felt it was still beyond his grasp.

For example, Connor is beginning to use the words "Mommy" and "Daddy" to name people. He isn't using them correctly and consistently, but that was our goal. Now, we decided that if he can recognize and name Mommy, Daddy and Ian correctly over the next few months, it would be great.

He has to work on his protection reflexes and that is now a goal as well as safety awareness. The speech therapist wants to see an increase of words retained and used and adding two word phrases. We will continue to keep his sensory issues a priority too. That might end up being more difficult for him than the actual language goals.

He also originally had read a book with the family for 30 seconds. You might laugh and say 30 seconds-but it takes about 5 seconds for him to decide he doesn't want you to sit and look at a book with him, he wants to look by himself and not be read to or have to point to anything on the page. Even the therapists cannot get him attending for very long, so we adjusted it to include a family task-puzzles, games, books, etc where he is actively participating. And sometimes he does - but it isn't consistent.

We will continue to monitor his routine and help him adjust to the smallest transitions he needs to make. Here's an example: after dinner each night, the kids must ask to be excused from the table. For Ian, it's "May I be excused?" and for Connor, he shows the "all done" sign, which is usually prompted. Then, they are expected to clear their plates in the garbage and put their plates into the sink. For awhile, Connor was getting a bit of an out and we decided that he could definitely be accountable for this too. Not being apprised of the change in routine, Connor would sign, slide off his seat and head for toys. Tom gently walked him and helped him clear his plate and put it in the sink using hand over hand. Connor loves the sound of the plate in the sink so he was happy about that. Next night, he heads off for toys and Tom redirects him back. Now he is ticked because it isn't what he wants to do or is used to doing. Once the plate hits the sink, he is fine. Finally, we would say "Connor, sink." His response-"No."-and walk off. We go get him and bring him back each time, ignore the protest and make him follow.

The breakthrough came this week. I was up getting juice for Ian and Connor slid down after signing that he was done. I was about to say "Connor, sink" and Tom was too, but he reached up and grabbed his plate-unprompted-walked to the sink and dumped it in. Did you hear the cheering?? It's coming along. So, we are working on more of that over the next few months.

In six months, he will be two and a half years old. We will revisit the goals to see what has been accomplished and then the school system will evaluate him for preschool, then the state will re-evaluate him for long term care just before or at age three.

I have to just say we have a tremendous team of therapists who work with Connor and without them, we aren't sure how far Connor would have progressed. They show us the way to talk to him, how to understand what things feel like from his perspective and give us great resources. They have our utmost gratitude and with their help, the goals are reachable and able to be surpassed.

Autism Awareness Day 13: Comedy Central Review

Comedy Central hosted a benefit for autism education last night in hopes of establishing more teacher education programs at Hunter College in NYC to be better prepared for teaching children with autism and to provide more programs for children with autism who are not receiving services who are in need.

While I wished that they had more awareness going on-nothing truly described what autism is, except for two segments that showed how difficult communication can be for these individuals-I don't know that an average non-autism-informed viewer would completely grasp why this cause was so important from two little segments. BUT, I really do believe that promoting quality teacher education is essential in dealing with the now, rather than that what could have been or looking for cures.

One mom said that she waited so many years for her child to be able to blow out his own birthday candle. And she said "Those are my milestones." It's a whole new perspective. Your milestone compared to mine, compared to her-all different. For some, saying "Mommy" or giving a brief flutter of eye contact is an enormous mile marker. I wanted to hug every single one of the parents and kids in the segments.

They have it much more difficult than I do and some might wait forever for their milestone to come. Regardless, where ever we are actually are on the spectrum with Connor, I have a much greater appreciation for parents who are raising children with autism and cannot imagine a system that doesn't provide help and therapies for the children and support for parents.

If I were a rich man....

Autism Awareness Day 12: Comedy Central Benefit

Tonight is Comedy Central's 2008 Benefit for Autism with a ton of celebs, including my favorites Jon Stewart, who is hosting and Stephen Colbert. You can also purchase the show on iTunes on April 15th.

I am sure it will be irreverent in many ways and sometimes the stars are bent on curing autism (more on that in another post) so I am planning to sit back with a cup of tea (lame, but still not feeling great) and watch. If you get Comedy Central, tune in if you can.

And yes, I am a day behind (and a dollar short!) but I went to bed at 8:30pm. I'll post more later.

Special Events for Special Friends

My two wonderful friends-Stacy, a very happy birthday and Shannon, congratulations on your newest little one, Evan.

Both of these ladies are the two most talented elementary music teachers on the planet. If your child is fortunate enough to be taught by them, music will be a love that stays with them for life. I could only wish that my two boys could have them as teachers. And yes, they are my friends but ask ANYONE around and they will confirm all the greatness that I have told you.

Plus, I just get to have two of the greatest friends on the planet. And I miss them fiercely.

Sometimes long distance friendships give out-and some of mine have. You realize who remains in your little circle will be there no matter how far the circle is stretched.

I love you both!

Saturday Wordzzle 8

Raven has posted this week's Wordzzle 8 challenge. I turned mine into a MegaWordzzle, which is becoming my new favorite personal challenge. If you want to play or read other participating blogger entries, definitely stop by Raven's blog. Plus, Raven's blog is just excellent anyway.

The words for this week's ten Word Challenge will be: galaxy, delta, redecorate, dearth, offshoot, Uther Pendragon, cordial, gingerbread, foretold, bonnet And for the Mini Challenge: palliate, functionality, jungle, brass, asphyxiate

Here's my take:

Uther Pendragon VII, a cordial fellow, lived in the delta. His name-you would palliate the name too- foretold of regal functionality, an offshoot of royalty- yet it continued to asphyxiate his dearth of a social life.

Uther was also questioned on what galaxy he actually lived on-a man who enjoys making gingerbread, offers to help you redecorate, listens to the Galaxy Brass Quintet religiously, Uther didn’t know what bee was in everyone’s bonnet, but he was tired of navigating this jungle to find one true friend.

Autism Awareness Day 11: The Great Vaccine Debate

This picture was taken in the end of July 2007, following our trip to New York and a few days after Connor's MMR shot. Yes, I am going to bring up the shot.

Notice the look on my son's face. As adorable as he is, cheeks begging to be pinched and all, he looks very melancholy and quiet. Connor, almost overnight, seemed to be in his own world. We'd call his name and he wouldn't even look at us. My husband would clap loudly right in his ear and Connor would not even flinch, let alone look at us. (meanwhile, Ian would be clapping furiously, showing us that he did, in fact, hear us) One night, Tom and I had put the boys to bed and were talking casually. We both seemed to bring up the fact that Connor appeared not to hear us, acknowledge us with eye contact or turning when calling his name. It seemed almost eerie. Once we concluded that something was amiss, we made our best guess and figured Connor had some hearing loss issues. I even told my mother-in-law and she responded by encouraging us to visit the pediatrician to have him evaluated to be sure.

Thomas, in the meanwhile, did some mini-experiments with Connor. We knew he enjoyed snacks and so Tom would open the fridge and get some juice or loudly take out a box of Goldfish. Connor, from the other end of the house, would come in, snack radar intact. He tried another experiment with the television, putting Connor in his room in the far end of the house. Tom muted the TV volume, but turned the set on. Connor, as if on cue, came from his room, directly to the TV. That raised a few questions, but as always, you figure the hearing loss is maybe one ear and not the other-on and on.

I also spoke to our daycare provider, Alexis, who confirmed that Connor did seem different. She noticed that he turned his head away from her on the diaper table and did not respond to any of her conversation in any way. We all acknowledged that Connor seemed to be more difficult at times-either screaming and crying or completely disinterested in what was going on around him.

Visiting our pediatrician was the turning point. Dr. Mike is excellent. He has talked to us about vaccines before and believe it or not, we did question giving the vaccines back when Ian was younger. He stated that there was no proof that vaccines cause autism and we listened and didn't have further reason to research on our own. Ian was completely fine following his shots, so we didn't really question Connor's MMR shot.

Dr. Mike had asked us a few questions about Connor during our July visit-how many words does Connor say? I came up with two. Connor didn't really point or gesture. Connor doesn't really talk very much yet but he knows shoe and can go get it. He received his MMR shot and we were done.

Now we were back in August, worried about hearing loss. Dr. Mike sat quietly watching Connor for a bit, then dropped a huge textbook on the floor next to him. No reaction. (I jumped.) He talked to Connor for a bit and asked more questions. More about pointing. No, he doesn't point. More about words. Well, it seems like all the words, all two of them, seem to be gone. It's like he doesn't know them anymore. More about eye contact. No, no eye contact. I told him all of our accounts and experiments and how we'd like to check his hearing.

Dr. Mike told us that while hearing loss was entirely possible and he would recommend Connor for an evaluation; that didn't appear to be the problem. What appears to be the problem was that Connor was not communicating and showing shows of autism. I admit that I was stunned when he said autism. It was the furthest thing from my mind. It was like someone just slapped me in the face and woke me up. He explained autism and told us that he treats several patients with autism. He reassured us that these children are great kids, just sometimes a "little quirky." He let us ask questions. He spent probably a good half hour with us, making no move to rush us out or anything. He talked us through the application for early intervention and encouraged us to get moving on it. He told us how many children are successful with early intervention and how they can regain what they have lost. He also told us that he noticed some lack of eye contact in Connor before the MMR shot in July and because we did give indication that he was building some vocabulary, he didn't find enough cause for concern. We left a bit bewildered.

Thomas had an idea that it might be autism. He didn't voice it to me. My mother-in-law also had that thought, but again, they waited to see. I didn't know. I remember going back to pick up Ian and talking to Alexis about Connor's visit and just crying. I didn't know what to think.

Connor's hearing evaluation was completely normal. We had a chance to read about autism and suddenly we saw it. On the official evaluation day, when the two doctors diagnosed him-we knew it was right. It didn't make it any better, but again, making peace with autism didn't come overnight.

Many of my friends ask me about the MMR vaccine, knowing about Connor and his timeline. Some even ask me, as if I am some authority, whether they should or should not vaccinate. Whether they should split the shot or not. Do I believe it causes autism? What do I believe?

I believe in vaccinations. I do. I'd even vaccinate Connor again. BUT....I would not give him the vaccine in one mega-dose. I would space out the shot over a period of time. Whether that would help or not, I don't know. Honestly, I don't think it would change a thing. But, my time for choice has passed and to look back with regrets over what I should have done will suffocate me emotionally. I refuse to live with that on my shoulders. Truthfully, I think autism was here from day one anyway.

I do believe that my son somehow is genetically predisposed to being affected by autism and perhaps the amount of the vaccine is more than his body chemistry can handle and exacerbated the symptoms. Nothing scientific backs that up. Nothing. Perhaps it is coincidental that the vaccine and regression seemed to line up. Many families also note that the timing of the MMR and noticeable signs of autism do appear linked. Somewhere in my mind, I wonder about that. But you also have to know that in my heart of hearts, I think Connor was showing signs from day 1. Sensory problems were all there in infancy. I see them now that I am in the know.

I also believe that there is a definite heredity link in autism and that fact is more and more apparent to me, not only in my own family, but in other families who have multiple children and even parents affected by autism. I believe that if I have another child (and the shop IS closed), his/her chances of having autism are greatly increased.
Dr. Mike gave us the best advice. Don't focus on why Connor has autism. We don't have time for that now. Keep focused on the now, on the present and move forward with helping him in his life now.

Some might be critical that I am not doing all that I can to figure out the whys. When you want to live in my shoes and do my job for me, let me know. I am not a scientist and I don't have any idea why autism is on the rise or why my youngest son has it but the older one doesn't. I can speculate but that doesn't make me right. I don't make decisions for other moms, but I'll support them and give them my story, but I will not tell them they are right or wrong, only what I know is true for me.

And that is my one and only post on vaccines. And that picture up above is one of my very favorites of my son because he is just so innocently beautiful to me, no matter what.

Autism Awareness Day 10: Labels

Labeling people according to their set of characteristics or behavior is such a tricky area. No one wants to be stereotyped and defined by one word, shackled to something when you are a multi-faceted person.

Yet, in the world of early intervention and consideration for getting help, having a label can actually give a child the very help they need. My son is very, very young for an autism diagnosis. It made so much sense and put us on the right path. I don't dispute it even with the progress he is making. Several evaluators told me that he would not receive immediate services without it.

Connor is so much more than a little boy labeled. He is intensely focused, he is comical and sweet, he is affectionate without reservation. He is a mother's delight at the dinner table-eating almost anything happily. He is a mess five minutes after a bath. He is a singer and a puzzle fan.

So, in our heart of hearts, we know he is so much more than the label he will probably carry for a very long time. Yet, this very label was a gateway to meeting all of the wonderful people who have joined our lives to bring Connor back in our direction. So, sometimes it isn't the worst thing in the world to have a label.

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