Friday, October 23, 2009

A Call for Help

Dear loyal reader,

It's nearly 3:00 in the morning. I have been neglecting a paper that I really need to write because my heart is just not in it. The truth is that since May 20th, 2008 my heart has been broken. I never would have thought over a year later I would still be crying in the still of the night when no one is around and I am left to my thoughts, but here I am. In saying that, I hope none of you would imagine for a second that I love Avi any less than I did May 19th; nothing could be further from the truth. I love my sons with everything my heart has to offer which makes it all the more difficult to understand how others could devalue either of them in any way.

My dreams for children are untainted, undimmed by any diagnosis. No parent should have to suffer the deflating and discouraging "worst case scenario" speech, much less expect that for their child. No society should look at any portion of itself and say without blush, "These deserve less." My sons deserve all the rights and happiness of any! Yet day after day parents of children with autism face the brutally unfair reality that they cannot afford everything their child needs to be well and whole. An appeal to their insurance company will quickly deflate them further as they learn that the system is set against them. Then comes the inevitable and cruel debate: what can we afford to provide, what can we afford not to. It is injustice on its most basic level.

This is where my call for help comes in. I cannot sit idly by any longer. I cannot look at my son or others and feel just when I have done nothing to bring about change. I have decided to undertake whatever action is in my power, whatever influence I have to bring justice and equality to my son and the millions who are similarly afflicted. 1 in 58 boys will be diagnosed with autism. I realize that the parents of the other 57 the problem seems distant and perhaps even unimportant, but I am no longer one of the other 57.

What I am asking each of you (I understand the minuteness of this group, but I believe in the power of even the small) is to undertake, with me, a campaign. I would like to urge to action senators, congressmen, governors, presidents and other elected officials. I would like to urge parents of "typical" and "non-typical" children alike to stand up together and unite for what is right.

I am so grateful for the help, the support and the assistance we have been lucky enough to recieve. I feel privilged that Avi is getting help on so many levels. Not everyone is so lucky. I can imagine the heart break of the parents who must decide to forgo their child's treatment due to the great financial burden placed upon them. I can imagine it because this heart break has been my own. I cannot fully enjoy the blessings given to me knowing that there are others who must wait. I hope to give voice to the voiceless and to lend my voice to those already crying out for equality. Please join us.

I thank you in advance for your help. I thank you for the support that surely every reader of this message has given me. Sometimes I think it takes a village to raise a dad, and if you think of the word raise as to lift up or to support, it truly does.

Wednesday, October 21, 2009

Diving Deep in a Rocket Ship

This week began the beginning of Avi's HyperBaric Oxygen Therapy (HBOT). The clinic asked us to come in at 7:30 every morning, but knowing that would be extremely difficult, Debbie asked for a later appointment. We were given 8:00. So every morning the sleeping brothers are wake begrudgingly, to be yanked from their warm beds, dragged across town and into the doctor's office. Avi already loves it. He has made friends with Tolesa (though he calls him Ah-ah-es-ah), Shane and Shawn (his favorite). They are the technicians who check his temperature, blood pressure and O2 sats. They also slide him into the tube and run it while the doctor comes and goes.

We told him that its a rocket ship so he wouldn't be scary for him, but he didn't seem to need it. He loves being slid into the tube, and getting to watch his favorite DVD's for an hour. For us though, things are a little different. We get to watch him without being able to do anything. We can hear him through a speaker and talk to him through a phone and of course see him through the glass (acrylic actually), but we can't touch him or do anything to help him. Today he suddenly decided to stand up and all I could do is watch as he hit his head on the top. Then he cried and cried and couldn't get a kiss or a hug or even a tissue. He actually calmed down very quickly, but still its hard to watch.

On the whole though, it goes really well. He loves the people and the experience and is really learning the routine.

Itai is slightly less interested in the whole thing. The place is covered in knobs and buttons and he can't touch any of them! It's horrible. He plays along, but it is difficult for him to wait so long. He is really interested in what his brother is doing in the tube and how he can get in there with him. He spent quite a bit of time pulling on the bar, feeling around the tube and looking for a way in.

Every morning Avi gets really excited to go to the doctor's office and go in the tube. Three dives down, 17 to go!

Monday, October 19, 2009

The Pumpkin Children

Here are the pictures from the pumpkin patch.

Thank Heaven for Fall Break!!

I had a week off of school for fall break last week. It was so nice to be home to be with our boys and Debbie. Sadly, between the weather and Avi's surgery we didn't get to do a lot of fun things during the week, but Friday we had a little time to have some fun. I woke up really early from work and after everyone was ready we headed out.
First stop: the park! Avi and Itai were happy to get on the slide and run on the bouncy ground (this park had the soft ground made of recycled shoes and tires). Avi got to climb up his favorite wall and tried the bent ladder for the first time on his own. He made it all the way to the top! Itai found a soccer ball and loved it. He tried to carry it, but it was so big that he couldn't hold it for long. Once he dropped it he got to chase it down and start over. We found out that he LOVES the long slides and HATES the swing.
After the park we drove past a pumpkin patch and decided to pull in. We thought that Avi would love it picking out a pumpkin, but he just wanted to run the entire length of the field. So Debbie and I got to pick the pumpkins while they rode in the wagon. Maybe next year.
Our last stop was the costume shop where, finally, we found Avi's costume. He loved it! He was carrying it all over the store. The boys both have their costumes and Avi has learned to say "trick or treat." It took quite a few m&m's and an episode of Little Einsteins, but he loves saying
it. I hope he stays excited for Halloween!

Friday, October 16, 2009

A Morning at Primary's

Tuesday morning we woke the boys up early for a big day. Avi had a morning appointment with an ear surgeon to have tubes placed in his ears. Things started off kinds slowly with both boys falling asleep on the couch. We were in a hurry but it did provide us with this cute little moment. Avi has been really affectionate with Itai lately and Itai LOVES it. He's been waiting for the hugs and kisses for a while now.

Eventually we got them up and bathed and ready to go. Sadly, Avi and Itai went their separate ways. Avi up to the hospital and Itai down to grandma and grandpa's (thanks again!!). Avi was so happy when we arrived, he got to play with toys, ride an elevator and even show the nurse how to exam him. Itai meanwhile got to relax a bit.

At the hospital Avi got dressed in his hospital gown complete with his "green socks." He was quite taken with them. The nurse seemed afraid to talk to Avi. She asked if he could handle her talking to him or if I needed to do it. I told her she could talk to him, which she did saying, "Sweetie, we're going to go back into a room and a doctor is going to put a mask on your face just like this one, only it won't have plastic around it. Then they're going to give you some gas that will smell like root beer, strawberries or grapes. The room we're going to is a clean room and daddy can't come in it. You'll have to walk into the room all alone and daddy will wait here for you. Do you understand?" The way she spoke to him I wondered what planet she came from and if there happened to be any children on that planet.

After I re-explained what I thought was important to Avi she asked me if he needed a social worker to come help him with the separation. I wasn't sure she was serious. She asked again saying, "A lot of kids like him (as if she knew anything about him) had a hard time being separated from their parents. I smile and told her I thought he'd be fine.

He was. When it came time for him to go I pointed the doctor and said, "You're going with the doctor now. Can you hold his hand? He gave me a kiss goodbye, grabbed the doctor's hand and off he went. No tears, no screaming and bravely enough, no social worker was required. It was less than twenty minutes later that they called the parents of Christopher (for some reason they decided to use his middle name, much to my displeasure.) to come to recovery. The tubes went in and we were out and all at ridiculous speeds. Thank heaven they let us leave quickly. Avi woke up very grumpy, which is why all of the pictures are pre-op.
After two untouched Popsicles, a few trips to the window, some time with the markers and a ride in a wagon we were gone. This was SOOOO much easier than the MRI we had done. Now we listen for changes!

Tubes are in now and he seems just fine. Thanks Doctor Kelly!

Saturday, October 3, 2009

The majority of people reading this (that's 2/3) already know this, but I am a cryer. I wasn't always this way, but it seems that my condition is now permanent. While this is hardly news to most of you, there it is. I'm well aware that books, articles, movies stories and warm breezes have the power to bring me to tears. Ok, the breeze part is a bit of an exaggeration, but seriously, crying comes quite easily to me.

The reason I'm writing this is because while I was sitting at work I watched a short clip that my sister Tiffany sent to me. (That's right Tiffany, you made me cry.) The clip was about a boy who was the team manager for his high school's basketball team. He also happened to have autism. Now, I have to admit that the more sleep deprived I get the more teary eyed I become, so it was foolish of me to watch this after a long night at work but I couldn't help myself. Here's the link for those who are interested.

So the other part of the reason for this crying talk is a response to my brother in law. While everyone else was waiting for "It's a Small World" at Disneyland Robin and I sat out. It was a nice opportunity to talk with him. We spoke about Avi and Itai, some of the struggles we've faced, and what I hope for the future. At one point in the conversation he asked, "Do you ever cry at night?"

I answered yes, but couldn't elaborate on the point because I was already getting choked up. So, yes Robin. I sometimes cry at night, sometimes in the day and sometimes in the safety of my solitude at work. But I've learned something that has helped me. Elder Wirthlin gave a beautiful talk in conference while we were living with Debbie's family in October, 2008. His talk was titled, "Come What May and Love It." This talk has become one of my favorite conference addresses. And yes, I was crying while I listened to it. In this address he says, "The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."

I absolutely love this promise. I can't imagine a more beautiful promise to those who experience loss or pain. To think that every tear shed now will some day be returned with gratitude brings some of that rejoicing even now. It is sweetly sobering to think that He who created world's without end and vast cosmic expanses knows, not only of the fall of every sparrow, but also of every tear.

So Tiffany, thank you for the clip. It was inspiring and tear jerking. Robin, I cry a lot, but even now some of those tears are "tears of rejoicing and gratitude."
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