Christmas Bummer!

Shopping for Dylan and trying to make his Christmas list can really bum me out. When I look at toys appopriate for his age, I realize how far behind he is and get down. Dylan would really just like to ask for toy trains year after year. We are trying to teach him that he's growing up and needs to play with toys and read books for his age level. He sometimes gets it, but more often goes back to his old stuff. I was with Dylan at Target and he picked out this game for his Wii game that uses a mat with the game. When I got home, I realized he couldn't co-ordinate looking at the mat and the TV while doing motions -- entirely above him. So, that spun me into a "poor me" mentality -- will he ever get caught up? Will he ever be ready for toys and games and sports for his age group? The Chicago Tribune wrote about this topic of buying toys for autism kids. They summed it up, it's no fun buying toys that are way too young for your child and realizing how far behind they really are! Bah hum bug!

Cool Autism Moms Feature

Redbook magazine has a cool feature about 10 moms changing the face of autism.

Arthur's Underwear

I have to write this one down before I forget... it goes into the chapters of my book called "You really owe me one some day, kid!" One of Dylan's favorite books is 'Arthur's Underwear' where the main character has a dream that he forgets to wear his pants to school. Well, letting him read this has officially come back to bite me in the butt! On Sunday, Dylan was having a really "off" day where he was restless and needed constant movement and could not settle into much of anything at church. So, I was walking the halls with him when I let him go by himself into the boy's bathroom. BIG MISTAKE! He comes running out in just his underwear and dashes down the hall yelling "he forgot his pants!" Two older gentlemen from another congregation come running after him saying "here's your pants!" I wanted to pretend it wasn't my child. The men managed to convince him that they found his pants and he should put them back on. These are the times you can either laugh or cry! This is so how raising a child with autism goes. The day before was Saturday and we were at the park with some kids. He was interacting and playing and being such a typical child. I thought for a moment, "wow, he's come so far!" And enjoyed the short moment of him being barely indistinguishable from the other kids. The next day he was so in his own world and streaking down the halls of church in his underewear! Now some of you may say, that's every boy's dream. But, how many of you have actually seen a boy do that???!?!!!!!

I May Have to Go to Georgia!

This is my dream high school, one that employs the philosophies of "Floortime" therapy, my very favorite. I may just have to move there for Dylan's high school, or start my own here, we'll see! Check it out in the NY Times article.

Who Else Cries at Presidential Debates?

No matter what the pundits say about tonight's presidential debates, Sen. McCain brought me to tears with this one statement "I will spend whatever it takes to find the cure for autism." At least he brought it up, then Obama talked about it too. After a day of these thoughts: "What's wrong with my son's stomach" and "Are his reading scores keeping pace?" and "Should I push him harder?" or "Does he need a big break from therapies, vitamins, school?" ... it was somehow comforting to curl up to the TV and hear someone say that they'd fight to stop this awful condition. It must be stopped. I spent time today reading about more potential causes and feeling the guilt: Was it the first vaccine he received as a newborn when I wasn't even in the room? Was it teflon in any pans we used? Was it metals in drinking water? Was it construction dust or other environmental hazards that contributed to this? Who knows! Why don't we know more? It's appaling to me that President Bush, the NIH, CDC and other health organizations have NEVER declared a war on autism. Why not? It impacts more children than childhood obesity or leukemia. Why do the parents have to fight so hard without the support of any health organizations? I'm tired today. I need someone else to fight the fight. I felt like giving grumpy ole McCain a big hug. Thank you for recognizing that this too is a drain on our schools. Thank you for acknowledging that it needs to get better. Thank you for recognizing that parents aren't the only ones responsible for finding a cause. Thank you for acknowledging my pain! There's a child upstairs who thanks you too!

Compensation From God

Elder Wirthlin, an apostle in our church, said this about his grandson with autism:

"Because Heavenly Father is merciful, a principle of compensation prevails. I have seen this in my own life. My grandson Joseph has autism. It has been heartbreaking for his mother and father to come to grips with the implications of this affliction.

They knew that Joseph would probably never be like other children. They understood what that would mean not only for Joseph but for the family as well. But what a joy he has been to us. Autistic children often have a difficult time showing emotion, but every time I’m with him, Joseph gives me a big hug. While there have been challenges, he has filled our lives with joy.

His parents have encouraged him to participate in sports. When he first started playing baseball, he was in the outfield. But I don’t think he grasped the need to run after loose balls. He thought of a much more efficient way to play the game. When a ball was hit in his direction, Joseph watched it go by and then pulled another baseball out of his pocket and threw that one to the pitcher.

Any reservations that his family may have had in raising Joseph, any sacrifices they have made have been compensated tenfold. Because of this choice spirit, his mother and father have learned much about children with disabilities. They have witnessed firsthand the generosity and compassion of family, neighbors, and friends. They have rejoiced together as Joseph has progressed. They have marveled at his goodness."

Here's his full article: http://www.lds.org/conference/talk/display/0,5232,23-1-947-9,00.html

I love how he testifies that when God takes away, he compensates with something else. Although Dylan is not keeping up with his peers, he brings so much joy and warms our heart DAILY. This weekend, he was really struggling to keep up with the soccer came. Eric took him to the goal post and showed him how to be goalie. Although, Eric really was the one blocking the balls, Dylan beamed with pride when his dad bragged about his ability to be goalie. Later in the day, he saw a group of boys climbing a tree and told his dad, "I want to go climb and be a monkey too." When he saw a friend's mom at the park, he asked her "Where's Matthew?" I was shocked that he'd associate the mom with her son as he's never paid much attention to either one of them. Little milestones like these cause Eric and I each night to stay up talking and beaming with whatever progress he does make... we do find joy amidst the heartache as Dylan gives back to our lives so much more than he takes away.

Flying Away!

Dylan had a dream day at an event called Challenge Air. Pilots donate their time and planes to fly children with special needs. Dylan and Eric got to go in a plane with a pilot for about 45 minutes. As they leave the hangar, the kids all walk the red carpet with cheerleaders cheering them on. Every single time a child walked the red carpet and got the huge ovation, it was an emotional feeling. How amazing the cheering section we all need in life! Dylan got to steer the plane for about 10 minutes! It was the ride of a lifetime to him. As you can see in the photos, he was in heaven!

The Wii!

Grandpa and Nana got Dylan a Wii video game. He really enjoys playing bowling the best. But, he is learning golf and other sports too. It's been great cause it keeps him involved with other kids when they come over to our house.

Well, the funny thing is listening to Ella be his "coach." She truly has the training of most autism behaviorists. She tells Dylan "do not spin the golfer in circles, play the game!" and "take your turn, don't spin!" She has sat through hundreds of hours of behaviorists, speech therapists and occupational therapists redirect her brother. She knows how to tell him to not spin out into his own world, but stay with the game. I sit back and watch in awe as she directs him like a trained autism specialist! She knows her stuff, at the age of 3, and could already have a career in it!

Autism Kids Are Brats?

By now, most of you have heard radio show host Michael Savage called kids with autism "brats" who just need more discipline and father figures. Eric's response: come over and babysit and then tell us what you think!

Another mom wrote an editorial that I agree with wholeheartedly, basically saying parents of autism kids WISH it were that simple that they just need more discipline!

Read her full response.

Sandals in July!

People often ask me about Dylan's occupational therapy. They tend to associate occupational therapy with work-related issues. I'm SUCH a big fan of occupational therapy and what it can do for high-sensory kids. Here's a small example: Dylan has very sensitive feet. I've bought several sandals for summer, including Crocs, in all sizes and colors trying to tempt him into trying them on. Each time, I've failed. He insisted on wearing hot sneakers with thick socks in 100-degree weather! So, I got these sandals last week and thought, surely THIS kid would fall for them if they have a CAR on the side. No such luck. I decided that these were the FINAL shoes I was going to buy this summer. So, I brought the sandals into Dylan's occupational therapist. She had him sit in a big bucket of rice and run his legs and feet through the feel of different things. As he sat there, he read a "social story" which is a picture book explaining things in detail. This social story was about when we wear certain shoes, such as boots in the snow, sandals in the summer, etc. When he got out of the bucket of rice, he put on his sandals and left the sneakers there (or so he thinks)! The next morning, he yelled "I forgot my shoes at OT!" I thought he was going to get upset, but he just put the CARS sandals on and went on with life. WHEW! These are the reasons I am and always will be a big fan of what occupational therapists can achieve!

Yay Jim Carrey and Jenny McCarthy!

People often ask what I think about autism and vaccines. Well, put simply: I'm not opposed to vaccines, but changes need to happen. I was pleased to see Jim Carrey and Jenny McCarthy hold a rally on June 4 in Washington, D.C. called "Green Our Vaccines." Everything they said, I agree with: http://www.cnn.com/video/?/video/showbiz/2008/06/04/bts.carrey.mccarthy.vaccines.cnn

We need change, 36 vaccines is too many too fast too dangerous.

Dylan's Doctor on CBS

The doctor who has been treating Dylan with intensive vitamins, medicine and diet was featured in this story on CBS local news: http://cbs11tv.com/services/popoff.aspx?categoryId=11&videoId=28172@ktvt.dayport.com&videoPlayStatus=true&videoStoryIds=28172@ktvt.dayport.com&videoTime=1.671&

A Grateful Mom!

Dylan's schedule is packed in this month of May with finishing up Kindergarten. He's had a graduation ceremony, where he sang to the 5th graders. Here, he sits with Noelle and CJ before the ceremony. Then, we had a picnic at the school for Mother's Day. I got to talk to several of the moms who said such nice things about Dylan. Emma and Noelle's moms both said their children love Dylan and have had such a great experience getting to know him. Emma's mom said, she didn't know what it is about him, but the kids can't stop talking about him.(Maybe cause he's quiet and mysterious!?!) She said he had prepared Emma to understand her cousin better who has special needs. Here, Dylan twists Emma's hair, he loves to do that right now. They were very kind comments and made me happy for Dylan. This could have been a tough year, but he has been lucky to have very loving and supportive friends.

Play Ball!

Dylan got to play T-Ball on a special needs team sponsored by the Kiwanis Club. Dylan has a great, fast hit and wants to chase the ball more than run to base. His sister got to participate too. It's great for both of my kids to play with other kids who have physical disabilities and struggles, but still play sports.

A Day Off!

Dylan had a day off school, but his sister did not. So, we had a one-on-one day. I kept asking him what he wanted to do: park, bike ride, gym? He didn't like any of his choices and just kept saying, "I want to stay home." Well, I wanted to get him to play and interact with me, so I watched what he was doing on the computer. He has been fascinated with the Honda car web site. His favorite new car is the Honda Fit. He wants me to trade in my minivan for a red one. So, finally, I said, do you want to go drive the Honda Fit. Suddenly, Dylan's eyes lit up and he was back "with" me. He ran to get his shoes and yelled "Let's GO!" He kept telling me to hurry and get in the car. When I got close to the Cheverolet dealership, he made sure I knew not to turn until Honda. Luckily, at the Honda dealership, they were popping fresh popcorn while Dylan waited (he got the popcorn gene from his Grandpa Staples). And then, he got his wish... a ride with mommy in a red, shiny Honda Fit. A boy's dream day! At least I got his attention!

Inspiring Letter...

I didn't write this, but I love it and it sums up my feelings:

""My son doesn't have autism, autism has my son.

He is a typical five year old boy full of beauty and intelligence
that is being smothered by a disease state that pulls him from his
potential. A disease state rendered by a path littered with
mistakes. Unintentional ones made by me, uneducated ones made by
doctors, possible intential ones made by those whose job it is to
protect us.

When he was first diagnosed, I thought it was the worst thing that
ever happened to me or him. Monthes of guilt-ridden sleepless nights
with a mind racing about what to do to save him. When considering
what a scary job being a parent could be, I used to say I didn't want
to be a statistic. I don't want to be the one whose child dies
rolling off the changing table. I didn't want to be the one whose
child gets electrocuted because I didn't put the stupid outlet plugs
in. Now I find myself in a battle that seems to be the statistic of
our time.

Where I am at now is that I see what a gift he is. All the guilt and
fear and run run running to get him better, what a waste of energy.
I now see that he was sent to me to teach me. Teach me that none of
us are perfect and we all have challenges to overcome. Teach me that
the greatest gift we can give our children is to love them and accept
them for who they are. He has taught me that it is ok to not be
perfect, to make mistakes. I work on forgiving myself everyday for
the ways I may have contributed to this disease and for not being
always perfect in caring for him. He has saved me in that I am
learning to love myself in my imperfection.

Will I still run run run to get him better? Hell yes. But the
intensity, the fear charged grasping, has abated. In its place is
focus, determination, and tolerence. One of his healers told me "He
is a seed. You maximize his air, water, food, sun, but ultimately,
he will grow as God intended."

Now I say, I want to be a statistic. My son will be a statistic of
recovery.

I send love and blessings out to everyone who loves and fights for
these children. All the best to you and yours."

April 2 Is World Autism Day!

Hats off to CNN for their extensive coverage of autism this week. You can watch it on TV or catch some of it here: http://www.cnn.com/SPECIALS/2008/news/autism/

So Obsessive!

Dylan is obsessing over so many things right now. I gotta figure out what is causing it. He is obsessed with watching old videos of Baby Einstein, something he's long outgrown. Yesterday, at church he was so obsessed with this flat tire outside that he could NOT go inside. He spent about an hour in the parking lot. I told his teacher, it probably would have been faster to just change a stranger's tire! He wants the lights on in the playroom, even when he's not playing in there. For all the highs we've had lately, this obsessive behavior is for sure a low. I've gotten some advice from other parents on what may be causing it, so I'll have to do some experiments with his vitamins this week. Wish me luck, I NEED good results!

I love this new video on You Tube, it even shows the place where Dylan goes to occupational therapy!

At Six, He's in the Driver's Seat...

Dylan is turning six, and we celebrated his birthday with a fun bowling party. If only I had known when he was two or three, all the things he'd be doing now. We still have a long uphill battle on this journey of autism. But, here are a few of the things I could have never imagined him doing in the beginning of this diagnosis:

1. Playing with his toys with an imagination and not just lining them up.
2. Enjoying coloring, without it being a task forced on him.
3. Bowling at his party with two friends he's made at Kindergarten.
4. Sharing his toys, without my forcing him. Today, he willingly gave his sister a turn on one of his new birthday toys.
5. When I told him it was time for his party, he said "Dylan likes chocolate cake!"
6. Making more eye contact.
7. Reading and loving it!
8. Playing catch, back and forth for longer than one throw.
9. Wanting to play with toys for his age, like Legos and rockets.
10. Saying "I Love You!" spontaneously!

Happy Birthday Dylan! You really are at the wheel now of your recovery and I can tell your hard work is paying off for you!

Basketball Hero With Autism, 1 Year Later

J-Mac, the boy with autism who scored 20 points in 4 mintues in his school's basketball game, now has a book out. I love this kid's story. His mom says she never imagined him going this far. She says in the beginning, you just want one word out of them. You never imagine how far they can go...

So Alive!

Sometimes there's a dull look to Dylan's face, like nothing in the world phases him. He can so be in his own world and we fight and scream to pull him out.

At other times, like this week, he has his glowing face on and everything seems silly and fun to him. Things seem to flow a little easier for him and he's high on life. I love weeks like this when he's so "alive" and fun to be around.


Like this Saturday morning, Eric and I were trying to sleep in a bit when we heard Dylan trying to figure out how to make his younger sister happy. She was fussy and wanting breakfast. We heard Dylan say, "Do you want some Blue Bell (ice cream) for breakfast?" Awwww, how thoughtful!

He has a favorite computer game that makes him giggle. He even grabbed my camera to take a photo of his "fish" game. (This game explains why I can't blog till midnight!)



These are the things that bring the biggest smile to his face right now: fish game on the computer, Lego cars, crayons and tinker toys. Then, repeat each one of these!

He's so "connected" right now with us and I wish I knew what makes him come out of his shell. Like tonight at dinner, he picked up one of his vitamins and pretended it was an animal from "Wonder Pets." He sang the WHOLE song with his little "animal" vitamin. If only I could keep him in this connected state all the time!

Sour Cream

She Says:
Tonight at dinner our daughter Ella was singing "Row, Row, Row Your Boat." And just to tease her, we kept changing the ending. She'd say "life is but a dream" and Eric would tease her by singing it "life is but a scream" and I said "but an ice cream."

All of a sudden Dylan chimed in with "but a sour cream."

Eric and I's jaws hit the floor. WHAT? He can rhyme? And not just on the computer, but our son with autism can rhyme verbally and in context of what the whole family is talking about.

I'm still amazed. Not only did Dylan join in our conversation, but he did it creatively. Life doesn't get much better than this. I'll never look at sour cream the same way!

Hearing Loss

He Says:

My hearing has been normal for most of my life. No real issues, just standard hearing. Then at age two my son started screaming. This is not a flop-on-the-floor-no-candy at-the-check-out-isle scream. Screams from horror films are also lightweight.

This scream startles people. It provokes the oddest responses. The strangest response is also the most common. People scream back at my son. And they try to copy Dylan's scream.

After a standard hunting trip, my ear started ringing. My ear nose and throat doctor happens to be my sons primary teacher. He knows Dylan's scream.

Here is what has happened. My ear received a repetitive injury that weakend my ear. Then all it took is a couple of shots to knock out my hearing.

Since I don't do anything with tools, or even listen to the radio loudly, there is only one source that could have weakened my hearing: my autistic son's scream. Moral of the story--wear ear protection. And be willing to give up things that you never thought you'd have to give up for your kids.