Ethan At VIA Center

It's Too Much

I can't even think to think to write about that I can't take this life any longer. The mania, the screaming, hitting, kicking, destroying our home, destroying my mind. How can this be the same sweet boy who put on a magic show for me this afternoon and said "excuse me Mr.Mom" when he and Stitch walked by?. The screaming is blood curdling the violence is intentional. He's manic, he's pissed and I have no idea why. Can I survive this night? I say that every night like this, but honestly, every night I really don't know if I can survive... or want to. Have mercy on me, someone, someday. Please, I've had enough

Here's a Little Secret...

When I don't post a blog for a long time, it is not because I am too busy to write. It is because I think life sucks big time and I'm pretty sure no one wants to read about my problems. Lately, I feel like a building that has just been bombed. Completely unrecognizable rubble, the smell of everything on fire and wondering why I am still alive to bore you with the details. Tell me who wants to read of tragedy that stretches out as far as the eye can or would want to see. Here it is, another sob story. Chances are you can no longer feel anything for me because you have already been asked to feel too much.
So, that's my secret. Life sucks and I refuse to tell you why.

YOUR KERNALS OF THANKS

This is a tradition that one of our babysitter's family does every year at Thanksgiving. Each person at the table would get a kernel of popcorn and hold it in their hands. When it was your turn, you told everyone what you were thankful for and then ate the kernel. 


This year, I passed around another virtual bowl of popcorn.  You each took a kernel of popcorn and held it in your mind and thought about what you were thankful for. Here are your responses:

I am thankful for-

for loving, supportive friends.

husband, children, grandchildren, pets, parents, siblings, friends, jobs, USA, salvation, and ice cream.

everything. Even the stuff I don't like

there are so many things to be grateful for this year...my family is all on USA soil and safe, I am very proud of all my kids, kids in law, and grandkids, I am no longer anyone's payee, my hubby is a fun guy who likes to dance and play, oh and he is very handy and does great work on our house, my work is hard but I am still able to do it and that feels good..

being able to contribute to the lives of others!

you all, my irl/f.book/twitter/plurk friends. You all really are something/one I am thankful for... :-)

all our friends and family that we share this life with.

that my daughter is home safe and sound!

my family and friends, one in the same.

all the wonderful people in my life! 

spending time with my sibs.

all of you making a difference in homeless pets' lives.

too many things to mention, but I'm most thankful for all the love and support of my friends and family.

my friends- a million times. I couldn't be more sincere, Thank you for just existing. From my heart.

each and every one of you and all that you do for your families, your kids, and each other.

all the wonderful people in my life! for such a wonderful Family and Great friends!

family and friends!!!! The love is absolutely what makes this world glow. I'm shining today...and grateful!!!

"To speak gratitude is courteous and pleasant, to enact gratitude is generous and noble, but to live gratitude is to touch Heaven."     ~Johannes A. Gaertner

Sometimes An Angel....

Many children with autism have meltdowns because of  limited or no language. Dylan is one of those children. Because he cannot process what he hears as quickly as most, because he cannot filter out background noise, because he has ADHD which makes him impulsive and easily distracted - all of these contribute to Dylan not hearing and understanding, not being able to articulate his wants and needs. It is heartbreaking for us when Dylan's communication is frustrated tears.

There are many communication systems and equipment available. But most, like picture cards, are cumbersome and impractical and the communication devices are expensive. We found out from a friend of ours back home that he was using old iphones for communication devices in the school where he works.   He sent the information to Tod.

Tod set out on a search for a 1st generation iphone; it didn't need phone capability, it just needed to be able to use the apps and Dylan would have a very portable, inexpensive communication device. Searching everywhere - Craigslist, ebay, freecycle - we were shocked at how much people wanted for non working phones that looked like they had been used for hammering nails!  Well over $100, which was more than we have to spend right now. We became disheartened.

At that point I decided that instead of looking for what we needed, I would ask for it. It never hurts to ask, right?  I put a simple Wanted Ad in Craigslist. "Looking for old iphone to use as a communication device for my autistic son. Need not have phone capability, just the ability to use applications." Within the hour I received an email from a woman who wanted to donate her phone to Dylan. She changed carriers and all the phone needed was a charger. What was our address? I couldn't believe it! I sent her our address and a picture of the boys and thanked her profusely.

Today there was a package in the mail with no return address, just the initials C.C. Inside was a practically new, perfect 4G iphone, that latest model Apple makes. This time we were shocked in an altogether different way.

Sometimes an angel comes into your life for just a brief moment and gives you just what you need.

Refrigerator Mom

About 2 weeks ago I re-posted a story from npr about a new therapy that was supposed to help kids with autism.  At the end of the story, the boy's mother said that there was definitely improvement, but for all she knew it could have been from the extra quality time she got to spend with her son. A friend responded with the idea that, of course the extra time spent would help. And, although there is much more to helping a child with autism that spending time with him or her, I had to agree that it was smart that he picked that up and that parents of kids with autism have to be so diligent not to jump on every band wagon that comes along. Sometimes a cigar is a just a cigar. There are no cookie cutter answers.

But, I have been ruminating on this for a while and feel I did not speak to the whole truth of the matter. Saying that it was just spending more time with her son comes dangerously close to perpetuating the Bettleheim take on autism. The Refrigerator Mom. The reason the child has autism is because mom doesn't show enough love and attention to the child.  The child then retreats into himself. Imagine, being a mom, being told your child has autism and then being told it is your fault. Unconscionable,

And while most people today have never heard of the Refrigerator Mom, people who don't have children with autism still tend to blame the parents for their autistic child's behavior. I can't count the number of times I've been in public and one of the boys has had a melt down and I get to hear from a complete stranger that my child needs a good spanking or why can't I control him?  Obviously, I don't have time to explain that the buzz from the fluorescent lights might be piercing his ears or things aren't in the same place they were last time or that just the cacophony of people and things are sending him over the edge. And then there is a good chance that I have no idea myself what's wrong because the boys have limited language. The meltdown is their communication.

When we talk about autism awareness, we talk about early intervention, research, cure. But seldom do we tell our neighbors what our kids might do and why. With a clearer understanding, the next time they are in the store and a child is having meltdown, they might offer assistance instead of criticism. Understanding, instead of blame. And maybe even the acceptance that both the child and parent deserve.

Bored, Bored, Bored

For the first time in almost 12 years, I'm bored. Being bored is something I've dreamed of, yes, even aspired to, since Ethan and Dylan were born. Ah, to have the entire expanse of a day in front of me with little to do but recuperate.

No colicky boys with apnea monitors, getting only 2-3 hours of sleep a day. Neither one napping at the same time (if they napped at all), Oh no, now the cat's puking, too! Laundry running night and day. Suspecting developmental delays, research, therapy, worry. Sweet baby faces smiling at Teletubbie balloons, So interested in reading and stories, music and singing.  Don't want your face washed? Making up a "wash-cloth dance".

Crawling in separate directions. Running...fast. Baby gates...worthless. Ethan your chewing everything! Swinging and swinging, two pushes for you ...two pushes for you. Trying to keep snow clothes on one, before the other takes his off.  We'll never get out of the house!

Pre-school - no, they can't be in school, already, we're just getting started!  IEP's, advocacy, seminars, meeting other moms. They're in the same classroom, we'll have to color code; does this come in blue and red? Their first school program! Gymnastics-that poor aide with never catch Dylan.

The sitters' called three times and the Christmas party hasn't even started. Broken arm, cracked jaw, pneumonia, drug reaction. Ethan has night terrors. Dylan, how did you get your head stuck in the door? 

Ethan said, "mommy"!! First imaginative play? Discreet Trial therapy a with stuffed bear. Hats! Puzzles! Numbers, Alphabet! Mom, I'm in Chicago with Tod, he just got out of heart surgery; what? did I just hear you say "put the knife down, Ethan"?

California? No family, no friends? Everything's new. New school, new system. How to navigate? Tod's out of town. Thank God for Gerrie! Two bathrooms, yeah! Ethan, don't stick your head in the toilet. Big yard, big gate. When did they learn how to ring the doorbell and run?

Visitors from home! Boys are so big, using computers, reading, writing, fighting over toys, Magic shows, bus trips around the world. Drawing, singing, dancing, melting down, growing up. "Paper, please", "more milk, please". "Lay down with mom?"

Now, I can't imagine what I thought was so great about being bored, Can you?