A LITTLE DROP OF WATER

A poem I wrote for Hunter's Speech Festival last year:

What kind of world would it be
if water didn't exist naturally?
We would have cracked lips and hands
and Summers without any lemonade stands.
Our hair would be caked with grease and grime
and our toilets would be---oh never mind.
We wouldn't have oceans with all of those fish
Or water fountains to make that one special wish.
There wouldn't be lakes to ever go swimming
We would just lie in a dirt hole-
and that's just the beginning!
There wouldn't be sleet or hail or rain
Not even the Snowman would be the same.
Imagine what mysteries we could uncover-
the mermaid, the Loch Ness, maybe another.
But what about the penguins and the Eskimos?
What could they do if their toes weren't froze?
No snow globes, no Icee's, no white water rapids,
no movies like Jaws or Christopher Columbus.
I've come to the conclusion that's better than none
Water is more than just plain, old fun.
A little drop of water falling from the sky
becomes a part of something greater
than just you or I.
A little drop of water
small as can be
can save a life eventually.

I AM SPENT

We have switched DD agencies and all of the kids are doing some testing now.

We have found that Mercedes has executive dysfunction or brain damage to her right parietal lobe. This came as quite a shock. She had extensive testing done, and they ruled out some of her past diagnoses such as ADHD and CAPD. She is a smart girl, but her left side of her brain is over compensating for her right side. This explains why she is so good at English and Vocabulary, but not so good at math. A possible EEG is on the horizon.

Ryder's challenges mimic Angelman's Syndrome or Prader Willi Syndrome. He will need another genetic chromosome test to determine.

Mason's anxiety continues to climb. He gets ready for school 1 hour ahead of departure time and paces the floor until then.

Hunter's endless questions bombard the family at all times. He craves food constantly and does not like therapy.

William silently struggles with activities of daily living. Only if you lived with us, would you be able to tell. Or smell, let's put it that way.

I am spent. ...Trying to figure out what the future holds...and trying to keep it all together.

A BALANCING ACT

There is a fly buzzing around my head. And no, we don't live in squalor. Although as I look around, the office could use a good pick me up. :) I would like to be a fly on the wall to see how my kids are doing in school. They started school recently. Well, three of the four started. Mason stayed home because he was too drugged up to even open his eyes. I have debated for a year now whether or not to try an anti-anxiety medication with him. We have tried two during the summer and they just make him way too tired and sleepy. Even at the lowest dose! And this kid is 5 foot 4 and weighs 130 pounds. Finally around 10am the Prozac started wearing off (we gave it the night before) but he is getting so stuck in routine especially when it is coupled with anxiety that I couldn't get him to go to school late, even if I walked him into the class. He is now acting like he did in preschool. If I didn't play "chase" outside around our car every morning before the bus showed up, our morning would be spent dealing with a major meltdown which also involved the bus driver. So, in the famous words of Carol Anne from Poltergeist, "They're Back!"

This morning, in order to be very early to school so that he has enough time to play before school starts, Mason picked out his older brother Hunter's uniform, poured him a bowl of cereal with milk, got Hunter's backpack ready, and kept prompting Hunter to hurry. Then took Ryder out to the car and buckled him up. This kid means business.

Hunter and Mason are so very opposite from each other -- I sometimes wonder if they really came from my womb. They are meant to be brothers, they really balance each other out.

IT IS WHAT IT IS...

Four weeks left until school starts. Then the fun really begins. I need to amend Ryder's IEP, that is the first item on the agenda. I wish our area had more choices when it comes to schooling for kids like Ryder. 2nd Item on the agenda is meeting with the special ed teachers in each school, and making sure we are all on the same page. 3rd item, making sure the lunch ladies are in compliance with Ryder's gluten and casein free menu...then I need to decide if Ryder will be riding the bus, or will I be transporting him everywhere. So many decisions. I just want to make wise decisions.

Ryder is definitely understanding us more and doing more sign language more often. He is doing better at self feeding too. It's been wonderful.

Today during Sacrament meeting in church, when all is quiet, Ryder farts long and hard on a metal chair. We sit in the very back of the church, but it was so quiet today you could hear a pin drop. And then he laughs and he laughs hard.

I just don't get embarrassed anymore. That's what Autism has taught me. It is what it is. I guess that's why people don't sit by us very often!

HBOT THERAPY

Ryder has had over 30 Hyperbaric Oxygen Treatment dives. His very first day, after wrestling with him to leave the oxygen helmet on, he yelled, "PUT ME DOWN!" three times. We were all amazed and had never heard a three word sentence escape his lips before. Does he just need to get mad enough? Is that the secret: motivation?

After one week he began going number one and two in the toilet. He is able to sit by himself on a chair, or the potty without getting up. He is more interactive, which is also seen by his therapists. He now comes when I call him. He will put his hands down when I ask him to. Relunctantly, yes, because oh! How the sound of a cereal box spilling all over the floor thrills him!

His understanding is clearer.

He seemed to hit a plateau these last couple of weeks, and then just a week ago he started answering yes and no when I'd ask him a question. Of course, it is a whiney drawn out answer, "y-y-ea-h" and "Naahh", hey, but I'll take it. He's trying.

I didn't expect this kind of success with HBOT. It's hard to keep my hopes up sometimes. I'm very enthused about his progress and hope it continues. Also, his tummy pain has lessened a lot. We used to give him Gas X at least everyday. Now, it's once a week.

It's truly amazing!! If only insurance companies realized how much this could help not only kids with Autism, but people with traumatic head injuries, Diabetes, Stroke, Cerebral Palsy, Macular Degeneration, chemical exposure, etc...it's all about big business, unfortunately.

THE GATE IS OPEN!

"Ryder has opened the gate!" yelled Mason, our nine year old son.

These words struck me not because he opened the gate and was about to get into trouble, but because Ryder really did open the gate. He opened the gate and let Autism into our life.

We were so clueless before. Autism has made me grow so much. I feel like I am an entirely different person now. Everything has more meaning. Life is not shallow like it used to be.

I am grateful for the little things and wished that time could stand still. I appreciate the moments that capture our hearts. The quick smirk Ryder makes when he thinks no one is looking. The squeal from his lips and insistent clapping when he learns something new. The wonder in his eyes as he watches a bubble bounce around in the wind.

I am also grateful for the knowledge that I have gained. It has given me depth. I actually do have an opinion now, because of experience. Maybe this comes with age, too.

Autism has brought a sense of purpose into my life. I can help others now.

I appreciate moments to myself like now; when the house is quiet and I can do whatever I want. Until the rat race begins in 4 point 3 seconds...

NATIONAL AUTISM RESOURCES

I recently came across a great site that sells fun items for kids on the spectrum. It's called National Autism Resources and they also have a blog that is awesome, too. They have sensory integration products, books to help with potty training, and tips for sleeping issues.

And if you are tired of your child chewing everything into oblivion, try the P's and Q's or the chewy tubes. Ryder loved those! .

Here is their statement:

National Autism Resources was born from a dream to make the world a little easier for people living on the spectrum and their family members. We strive to empower our community by providing excellent information, helpful links, and affordable books, games, toys and therapy products for people on the spectrum.

So mosey on over and have yourself a look-see. These would make great gifts, too!

(By the way, Ryder loves the Chewy Tube as evidenced by the photo above, which you can purchase at National Autism Resources.) :)

WHEN CARL MET GEORGE

Take a look at this Arthur clip on PBS. It's a cartoon explaining Asperger's Syndrome to kids. It wouldn't hurt adults either, I don't think. :)

THOUGHTS ON HIGH SCHOOL, ANXIETY, AND BULLIES--

My 20 year class reunion is fast approaching. Did I go to my 10th reunion? No. Did I go to my own graduation? Yes. Was I seated in cap and gown among my fellow classmates? No. I remained hidden from view at the top of the gymnasium on a bleacher, dressed in civilian clothes. I had graduated early and did not want to walk among my peers. High school was hell for me.

Recently I became reacquainted with a friend (thanks, Facebook) whom I knew in high school and with whom shared my same disgust for the bullying that took place there. We were both bullied. She dropped out of school in 10th grade, (later getting her GED), and I dropped out of life. After years of anxiety, depression, and being bullied, I was hospitalized during my senior year. I just couldn't take it anymore. High school culture was killing me.

I don't blame anyone in particular. In fact, I feel sorry for the bullies. High school is a rough time for all teenagers. We were all so full of teenage angst and not mature enough yet to handle our feelings of inadequacy, belonging, emotions, etc.

I wouldn't go back if someone paid me. And believe me, money is quite a motivating factor right about now.

How I wish I was different back then. That was the 80's. Prozac was brand new. I wonder how high school life would be now that I am on Zoloft? Would it be much different? Would I be able to tell that bully to stop copying off my paper instead of just sitting there? Would I be able to raise my hand in class to answer a question? Would I be spared the silent panic attack that came during Mr. Yazzi's science class? My anxiety has always been on the forefront and has kept me from living life to its fullest. But it's also comfortable. Or is that my anxiety talking?

Being bullied was the little seed that was planted deep within my soul and grew to this compassionate tree much like a weeping willow. I bend when the wind blows; but my roots have found their strength in experience. To the kids that like to bully: come play in my branches, or my children's branches, but always remember, I make a nice whip.

THE OPPOSITE OF THE MIDAS TOUCH

Having "things" isn't important. We've learned this the hard way.

Between Hunter and Ryder and sometimes dear hubby, objects around here don't get to enjoy their full potential.

Hunter has the opposite of the Midas Touch. Since he was old enough to grasp something he has had the ability to destroy it. Sometimes it is just by curiosity. Sometimes it is by carelessness. Sometimes it is because it was "Made in China" as he puts it. Hunter's 11th birthday was last week. I've learned not to spend a lot of money on him for his birthday because 1) He'll break it without meaning to, 2) he's perfectly happy with things from the dollar store. He is beginning to get very frustrated with himself however, and asks, "Why do I always break things?"

With Ryder, you learn to keep everything out of reach. Just when I think he can't reach that, he proves me wrong. This morning, lamps were on the floor, chewed up baby wipes were all over, and he destroyed a new crafty thing I bought. (luckily it was only $1.)

They say living with Autism is similar to a soldier on the battlefield. I'm always in a constant state of alert. Every ten minutes, "Where is Ryder? Where is Ryder? Who knows where Ryder is?" He can be very sneaky.

And now, for Dear Hubby's Midas Touch. Hubby is very accident prone and can look at something wrong and it will break, or not work, etc. Then out of frustration he'll talk to it as if it were a live person. "Stupid piece of dog meat!" is his favorite. I have yet to hear the object talk back, but when that day comes, the state hospital is only 30 minutes away.