Monday, April 26, 2010

My Mom

Mom, this post is dedicated to you and since you asked about the 100 day kit I have to oblige. The 100 day kit is a free product designed to help families whose children who have been recently diagnosed. The purpose is to help give understanding of what autism is, what it means to the family, finding services and what can be done to treat it. When you are given either no information or too much information the diagnosis is literally overwhelming. The Internet is filled with information, but deciding what is useful and what is useless is difficult. This booklet is concise and exact. It is a map I wish we had it early in our autism journey.

Looking around my neighborhood growing up there was little competition in the mother of the year arena. It didn't matter, my mom would have won hands down anyway. There was nothing my mom couldn't accomplish for her kids, including winning back a favorite toy that was unfairly confiscated by a substitute kindergarten teacher. I loved how she let me dig up our backyard on my relentless search for fossils. As a kid I thought I knew her so well, but she would constantly surprise me.

One of the stories I love tell about my mom happened when I wasn't even there. I served a two year mission for my church. During the two years I didn't see my family at all. We spoke on the phone and emailed of course, but I lived in Eastern Europe and they were in America. As I'm told, on the first day of this separation, right after leaving me, my family went to get some lunch. They ordered sandwiches and brought them home. After they were all passed out there was one left and my mom wondered whose it was. When it struck her that she bought one for me she started to cry. This story brings emotion even nine years later. I love the phrase mother-heart, because my mom has one.

My mom was a constant teacher. One of the most memorable teaching moments from my childhood was when I had an earache. I came to her in pain, she gave me some medicine and let me lay my head on her lap. After laying and crying for a bit I asked if we could call my dad so he could come home early and give me a blessing. She said he couldn't come home but he could give me the blessing as soon as he did. Then she said, "A mother's prayer of faith can be just as powerful as a father's blessing." She said a prayer over her skeptical son and let him put his head down on her lap. I fell asleep and when I woke up my ear felt fine and my skepticism was gone. My mom's faith was something that sustained me many times.

I have already mentioned how on my worst, darkest day following Avi's diagnosis when I did not want to appear weak in front of Debbie I called my mom. She agreed to come over and appeared almost immediately. I, sobbing like a small child, fell into her arms where I stayed for several minutes. She patiently, understandingly and knowingly listened to me. I will never forget how kind she was as I sobbed and sputtered horribly. I wish everyone could know what it is like to have the unwavering, unflinching love of a wonderful mother.

Abraham Lincoln once said, "I remember my mother's prayers and they have always followed me. They have clung to me all my life." I feel the same way. My mother's prayers followed me across the ocean...twice. I knew that she was praying for me and thinking of me. I remembered her prayers from my youth. I still remember them.

It is said, "Daughters always become their mothers; that is their tragedy. Sons never do; that is theirs." My mom has set the bar pretty high, making it easy for me to never become like her. There are many more than five things my mother has always done or been that I wish I could be for my children, but here are some that stuck out to me.

1. Like my dad, I never had to wonder whether my mom loved me. She never left room for doubt. Her love was unconditional and undeniable. She was kind beyond measure and loving beyond reason. I never had to earn her love and would never have been deserving of it. I knew there was no question where I should run when times were tough and no question what the response would be.

2. On a that note, one of the things I love best about my mom is that it is impossible to have any kind of interaction with her without it ending in her saying she loves you. Anytime we speak on the phone, I stop in for even the shortest of visits or even text message, I am always guaranteed to hear that she loves me. One of my favorite quotes from Ed J. Pinegar is, "You are a child of God, who loves you. I don't know about you, but that gives me self esteem for life." Having a loving and expressive mother has given me self esteem for life.

3. My mom used to take us on individual "special times." You can imagine with five siblings getting this kind of quality time was difficult. I'm sure giving it was even more difficult for her. It was a chance to spend some time one on one doing whatever we wanted to do. Most of the time I picked donut holes at Dunkin' Donuts. There were other things I liked doing, but it didn't really matter what we did; I loved just sitting with my mom. We would talk about things she couldn't possibly have been interested in, but she listened all the same. I remember the feeling on these special times very well. I couldn't go on a special time but believe that I was not just her favorite child, but her favorite person on earth. She had a way of making me feel like the most important person.

4. I once had pet praying mantises. At first it was only one, but eventually I decided to add to my collection. Can you believe that my mother let me keep these things? I loved them and when the female devoured the male my mom was there to console me. After she consoled me she taught me. She explained how animals don't belong in jars and cages and need to be free. She taught me what happened was the natural order of things and even though I was sad for the male he would be with Heavenly Father. I let the female go and hoped the male would forgive me for putting him in with her.

5. I will preface this last one by saying this is no shock and you don't have to make any comments on the next sentence either in person or on the internet. When we lived in Florida my teachers sent me to be tested for the gifted program; I failed. (Like I said, no shock, right?) I felt like the test was going really well until he pulled out those blasted puzzles. I struggled and struggled to make the designs he had given me with those little plastic shapes. I could see the result from the look in his eyes and the way he was writing on his note pad. At the end of my test I went back to my mom and thought she would be so disappointed in me. It was quite the opposite. She hugged me and told me she was so proud of me. Then, and I'm breaking a promise not to tell here, she took me to McDonald's. Sorry siblings, but it's true. You know, as we sat there she never brought the test up, she didn't ask me what went wrong or what had happened. She only asked if I felt ok. What a reassurance. I may have failed my test, but my mother certainly passed hers.

My mom has taught me more than I will ever really know. Her example helped me choose a wife who would be, and is, a wonderful mother in her own right. There is no limit to her impact on me. She has influenced me in other ways that are too many and too dear to fully elaborate on here.

Saturday, April 24, 2010

Waiting for Summer

The nice weather has been a blessing and a curse. We've loved being outside but it makes it really hard to wait out the end of the semester! Here's a quick update on what we've been doing. Of course, we still visit the fish and the penguins. Itai loves the sharks and the big fish. They just swim too quickly for my camera phone.
We decided to try eating outside in the nice sun. Avi and Itai split a hot dog. Both enjoyed it, but Itai mostly enjoyed the buses, trucks, motorcycles, airplanes and helicopters that we all over.

Avi enjoyed all of those vehicles, but in the end his favorite was the bicycles. He doesn't look like he's happy about it, but he was...I promise.

Yesterday I looked back and found Avi sporting my beanie. I left it back there a while ago, he found it and decided he needed to wear it.

And of course there is the infamous owie incident. Avi reached into an opened can of green beans looking for food and got himself a cut. He came running in saying, "Kiss it better!" It wasn't bleeding immediately and didn't start until Debbie was kissing it better. Ok, so the cut was pretty tame, but it was the first really owie Avi has ever had so it was pretty big in our house. Here's his little band aid. You can see he was cuddled up with Ima while he calmed down, well fell asleep actually.

What was Itai doing during all of this? Well he was crying pretty hard too. Why? Avi got a band aid and he didn't. Here he is happily band aided up. I think this is payback for me doing the same thing to my parents!

Happy is the finger that gets the band aid without getting the cut.

In happier news Avi has learned to swing on the big boy swing...again! He, as you can clearly see, loves it!
I know I already posted this picture of Facebook, but I really like it.

Sunday, April 18, 2010

Reminiscing On a Bad Day

This weekend we had our fundraiser for our team, Avi's Angels. I cannot believe how generous people were with their money. I was so amazed by the support of or neighbors and friends, thank you to everyone!

Do mind if I tell you a story? We were sitting on small chairs half talking with the doctor, half trying to will Avi to do well on his tests. The truth was, Avi wasn't doing well. He was stuck on crayons and had no interest in the man sitting in front of him. Finally the doctor began telling us some of his history, he worked for so many years in this home for children with autism, he has been a child psychologist for this long and a father of a child with autism for so long. I felt like all of this was building up to him telling us that with authority he could safely say that Avi did not have autism. I was sure he would tell us we had worried for nothing and our lives would go back to the way it was before we ever worried about autism. Instead he told he told us he believed Avi was showing signs of autism. He began to tell us Avi would probably never speak, be potty trained, show affection (I know I've said all of this) and on and on. He told us that he and his wife didn't take their son out for nearly ten years and warned us that we would inevitably need to go to these drastic measures. On and on he went with horrible predictions. Finally he asked if we had any questions and sent us on our way.

I will never forget that feeling. I had never been numb like that before. I looked at Avi through the rear view mirror. He was my beautiful boy. I remember looking at him and thinking he looked exactly the same only completely different. It was as if someone had pulled my sunglasses off and i was shown the glaring brightness of the day. To say I was heartbroken is not nearly sufficient. It was more a kin to heart rending. It was hope squelching, soul baring. There were many reasons we gave him such an unusual name, but none of them were to keep him hidden away. I could not stand the thought of hiding him away from the world or of hiding the world away from him.

Within a week or two I found a new determination. I was determined that even though Avi had autism, autism would not have him. I KNEW we were going to "cure" this. Eventually i was going to write about our experience and call it "Taking Back Avi." I remember writing, "Autism is a powerful force that pulls constantly at a child. To defeat it a parent must not not only fight, but rage against in order to free their child from its grasp."

Eventually that resolution to "rage" against autism gave way to hope. One day after I had gained some acceptance about autism I was running late for school. When I couldn't find a parking spot where I usually park I had to park on the far side of campus. As I walked back to my car that day I realized how close I had parked to the office where Avi was diagnosed. I wondered if there was another family there. I wondered if anyone would be there to comfort them and guide them through. My heart went out to them, whether they existed or not. I later learned a child is diagnosed with autism about every twenty minutes. The chances that someone was sitting in that office, or one similar were pretty strong.

I mentioned how the walk was important to me finding hope again. Our team has raised over $1000 for Autism speaks. This money can provide 18 100 day kits. These kits help guide parents through the first and extremely difficult days. Debbie and I received ours much later than the first 100 days, but I wish we had it earlier. When I meet a parent of a newly diagnosed parent I always tell them to get this as soon as they can. I believe in these kits. I hope that this money will find someone who has lost their hope and save them at least some of the anguish I went through. I hope the money will find someone before their hopes have been completely destroyed. I hope does the good I think it will. I hope again.
(I know I've used this picture before, but they are just plain cute!)

Sunday, April 11, 2010

Whenever I Think About Pioneers

I was lucky enough to meet two incredible women last month. Both of them were pioneers in their own right. It's just a coincidence that they both deal with disabilities, but I was impressed with both of them.

The first woman I met was Terrell Harris Dougan, author of That Went Well, and sister of Irene. That Went Well is a book detailing some of the adventures she has had as her sister's care taker. Irene is about six years younger than Terrell and was diagnosed with mental retardation in kindergarten. Her family was of course devastated by the news and what added more to their devastation was the udder dearth of programs available for people with that and similar disorders. Her father took out a full page add in both of the local papers asking families in similar situations if they wanted to get together, bring in an expert and start a program in Utah. The result became ARC of Utah. This group single-handedly influenced law makers, created early intervention and school age programs, created group homes and the rules by which they are governed, established work programs, adult care facilities and more. Their parents were responsible for changing the lives of countless families and individuals with mental retardation and similar conditions.

Once their parents were unable to care for Irene, Terrell took up that charge as well. She began caring for her sister and the results can be read in her book.
This is Irene and Terrell today; they can be found in the back of her book.

This is the cover of the book. She told us that the editor picked a strange picture for the cover, so it's neither of them.
Even before Avi was diagnosed with autism he was using early intervention services from Kids on the Move (KOTM).
His speech therapist took a liking to him and taught him many signs and taught us strategies to help him begin to speak. After his diagnosis she was able to give us some resources that we sorely needed at that time. Avi loved their play group and would probably still remember the red swing he loved so much. Selfishly though, I never even considered the origins of Kids on the Move. I assumed that KOTM was simply a function of the local government and just accepted it as such. I was lucky enough to meet one of the founders of KOTM and learn how it began. Karen adopted a son with Down's syndrome. She took him to a professional and were told, "Love him, but don't expect much from him." This didn't sit well with her. She would love him, but she could expect a lot from him and FOR him. Along with a friend who also had a child with Down's syndrome they formed a volunteer preschool for children with Down's syndrome. This preschool grew and continued to grow to include different disabilities. Today KOTM has a beautiful building all their own and they continue to help children with a wide variety of disabilities and delays. More about their history can be read at their website here:Kids on the Move

I can't believe how determined some people can be. I wish I had the vision of these parents; they are amazing.

Thursday, April 8, 2010

An Old Friend Returns

Avi's keyboard died a little while ago. Nothing serious, just dead batteries and a really lazy dad. Itai mourned the loss too actually. He loves stealing it from Avi. After many sad looks when they tried to play it an couldn't (and even more reminders from Debbie) I finally got around to replacing the batteries. I told Avi to go play it, but he had learned not to bother with it anymore and wouldn't listen. When I finally got him ot try this is what it looked like:
"What? This thing? It's broken, remember?"

"It's a miracle!!"

Two thumbs up!! (And a lot of sun in the face!)

To sum it up, Avi was really happy to have his piano back. Thanks Tiffany!

Wednesday, April 7, 2010

Today's Weather? More Please!!

I think it's pretty sad to be excited for 50 degree weather in April, but I couldn't have been happier to see clear skies and warm-ish temperatures. Is it too embarrassing to admit that I honestly considered pulling out the inflatable pool for the backyard? Oh well, I did. The only reason I didn't was because Avi and Itai were too grumpy without hypothermia! So what did we do with this warmer (and apparently temporary) weather? First off was a trip to feed the ducks. I guess I wasn't clear about the purpose of our trip to the pond because Avi kept trying to walk right into the water. Itai still loves the ducks, as long as they don't hiss at him like the goose did. I didn't have the camera with me for the duck pond, but it turned out to be good, because Itai was so tired that he was stumbling around and I barely saved him from taking a dip a few times.

After we ran out of bread and the seagulls came swarming for leftovers we headed to the park. Both Avi and Itai were really excited to get running in the sun. Itai was so excited that he went face first and ended up with a mouthful of wood chips. Avi managed to climb the whole climbing wall before I even knew he was there! There were some older boys there yelling, "Look out we're big boys!" Avi thought they were hilarious, but Itai was wary of them. He seemed to be afraid of being trampled.

There's one of the "big boys" running by.

After spending way too long at the park we came home to cook and clean (that's right! My children are slaves!). Apparently the park was a little more exhausting than I thought. Avi just collapsed.

After a quick nap and finishing dinner it turned out we still had some time before Debbie got home. We used it to take a quick trip to the backyard for some more fun. Itai started tantrum when I tried to bring him in for a jacket and one of the neighbor kids yelled out, "What the heck!" Once I stopped laughing I finally got him inside and got his jacket on. (Later tonight I saw him in the back of a cop car getting a stern lecture so...what the heck to you!) :)

It was so much fun that even Debbie got in on the action!
Today was so nice! I hope we get a few more like it!

Oh and did I mention Itai got a hair cut? For some reason they thing a sticky sucker and hair everywhere is a good combination.

Monday, April 5, 2010

Signs You're a Great Dad

Sign #41 When it's 7:30 in the morning and one of your kids opens an Easter egg and shares the M&Ms with his brother while you are getting breakfast ready you're probably a great dad.

Saturday, April 3, 2010

Easter Egg

So maybe Avi and Itai don't know what an Easter Egg hunt, or even an Easter Egg is but that couldn't stop them. The weather is still cold and windy and even a bit wet, but that couldn't stop them. The neighbor kids got a big head start on them, but even that could not stop them! They had to hunt out the Easter Eggs and bring them home.

As you can clearly see, Avi was intent on searching every inch of the neighborhood.

Itai wasn't going to miss out on any opportunities, no matter how empty his basket!

And of course, no Easter Egg Hunt is complete without a relaxing break and spliting a Lunchable!
Thanks mommy, for taking us out!
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