Saturday, February 27, 2010

Our Amazing Week

We've had an amazing couple of weeks. I know that most of you already know what has happened this week, but I feel so grateful for everything that I just have to share...again. I write this knowing not everyone is having a great week (the people of Chile, for example). I promise I am not writing this to gloat. Actually, I want to let people know that things can change. This winter was really difficult for our family. You have read many of the challenges in this blog, but there are others I haven't shared with anyone. We've survived illnesses, financial insecurities, frustrated goals, uncertainty, experiments, changes in school, changes in behavior and who can forget medical bills, medical bills and medical bills?

It's not quite spring yet, but I feel like our winter is over and we've come into a season of renewed hope and life. Our first exciting news came when we found out Avi was accepted into the therapeutic preschool program we've been waiting so long to join. We'd picked up and moved to be closer to this amazing program and finally we were going to get to be a part of it. The psychiatrist told us he knew when they had their admission meeting he would hear, "How cute Avi is." He kept describing Avi as "very congenial." When he told us again that Avi is congenial and said that he would like to work with him we felt pretty confident he would get in. The next day we got the good news.

As you know anything autism related is extremely expensive and almost never paid for by insurance. This program is no exception, but the second bit of good news (great news really) is that we won't have to pay for Avi's preschool out of pocket. We were really stressed about paying for it, but we are so relieved and grateful now. I mean, who is given a truly life altering gift like that? Not only that, but one worth far more than the high monetary value placed on the gift? This was enough to make a great week, but for some reason that wasn't all.

We tried a treatment plan that is a little unorthodox at the end of last year. It was difficult to say how well it went because Avi started school, speech and this new therapy all around the same time. Eventually funds for this therapy ended and we had to stop. In this next bit of good fortune we found out we are lucky enough to get to give it another go. This is a short term experiment, but it will help us better understand if it was actually effective or not. We'll see how it goes.

I thought that was enough. I don't want to ask for too much and I really felt undeserving of what we had already gotten. (Not that Avi isn't deserving, because in my completely impartial opinion he really, REALLY deserves it.) As I mentioned, our insurance doesn't cover anything for Avi. We've been desperate to provide him with therapies but we just didn't have the funds for them. This has been one of the most horrifying parts of autism for me; to have to sit back and wait while your child needs help is nearly unbearable. With the help of a really supportive, understanding and knowledgable doctor Avi was finally approved for Medicaid. Why doesn't insurace cover autism? Don't get me started on that one. Why don't all kids with autism automatically get disability coverage? I won't comment on that, but I will say that Utah House Bill 184 aims to correct this. I would love it if you took a moment to email or call your state senator to let them know you support this bill. Avi finally has the help he needs, but what about the other children?

Oops, sorry for the digression. We now return to our coverage of the best week ever. Honestly, after all of that I really felt undeservingly blessed at this point, but the week still had one last bit of magic to perform. We found a business that does intensive therapy near our home, but we couldn't afford it. We had a plan to scrap together enough for Avi to do a month or two, but amazingly Avi is now enrolled for the five months leading up to his enrollment in his therapeutic preschool.

Wow. Just wow. I know we haven't reached the end of anything yet, but I feel like we are finally getting a chance to start. After the darkness and hopelessness we'd felt for so long this feeling of hope and optimism is refreshing. I am so grateful for everything. I know I have overused the word amazed but I really am amazed at everyting!

While I was in the MTC, still in the grips of the worst case homesickness I have ever experienced I read a quote from Boyd K. Packer. It helped me through what I was convinced was the hardest thing I would ever go through. I often think about this quote: "Somewhere in your quest for spiritual knowledge, there is that 'leap of faith,' as the philosophers call it. It is the moment when you have gone to the edge of the light and stepped into the darkness to discover that the way is lighted ahead for just a footstep or two. “The spirit of man,” is as the scripture says, indeed 'is the candle of the Lord.'" (Prov. 20:27.) After feeling as though I've taken more darkened steps than I am comfortable with I found that my way was lit. It is with good reason that Jesus is called the "Way, the Truth and the Light." No matter how dark our path He is the Light at the end of the tunnel.

Thursday, February 25, 2010

Post Party Life

Seriously? A whole week with no birthday parties? No presents? No candles? No cake? (Ok, I confess we've had cake.) What do we do on a week without all of these special events? Well, Abba stresses about tests, giving a lesson and strange sleeping patterns. The boys on the other hand have much better ways of passing the time.
Avi likes his new fancy markers, even if he can't color on his face, clothes or anything other than the paper.

The regular markers, now less coveted, have been passed on to Itai. And as long as he's inheriting markers he might as well inherit Avi's furniture designing skills, oh and Avi's hand coloring skills. Somehow he even managed to get marker in his ear!

Once the coloring is done there is only one thing left to do. Get dressed up, looking cute and on the bus for school. Here's Avi looking handsome in his new jacket. (Thanks for the gifts everyone!) He looks distressed, but he's really just saying, "Bus coming."

How about Itai? Well, with no bus coming he gets to sport a bit more relaxed look. Here he is just trying to get around the house without being bothered.

"Ah man, I can't go anywhere without the paparazzi following me!"

Monday, February 22, 2010

Celebration #2 & #3

Avi's party week continued Saturday with a trip to grandma and grandpa's house. We've been practicing blowing out the candles all week and I guess Itai got a little tired of just practicing. He ended up blowing Avi's candles out before the song was even over.
Some very strange and rare things happened at this birthday party. For instance, we have photographic proof that Uncle Jon can smile! Who would have thought. :)

While we weren't able to photograph Alex smiling we were able to get him to pose for the camera. Baby steps I guess.

There was no problem finding pictures of a very happy Aileah. She was smiling and laughing and very playful.

Avi really enjoyed the attention of his cousins. They take really good care of him and he LOVES them for it.

He's so luck to be surrounded by his cousins and one excited aunt! Thanks for helping him open his presents guys.

After all this partying you really need to take a minute to reflect on the past four years and consider the direction of your life.

Party number three was a feast. Debbie's family came over and Avi was once again excited to see everyone. (Thanks Debbie for all the delicious food!) After looking around for a second at all of the party goers he shouted, "Cousins!" He really enjoyed having so many family members around for his big day. There was just one problem with this party, me. I forgot to take pictures! Sorry! Avi had a great time following Tal up and down the stairs and he absolutely loved the cake. This was a pretty busy party week and Avi felt it. You know you've been partying hard when you fall asleep like this:

Saturday, February 20, 2010

Why I Love the Walk Now for Autism

So your may be asking yourself, "Why is Jared driving everyone crazy with this walk?" I am, I know it. So first off, I'm sorry if I'm driving you crazy, but this is really important to me and I want you to know why.

Last year was our family’s first year in the walk. We were still very new to the world of autism. We weren’t even sure if we wanted to participate. We were still reeling from the diagnosis and weren’t sure if we were ready for something as public as the walk. I only knew a few people who had children with autism. I could feel the quizzical and sometimes disapproving looks from others when my son’s behaviors didn’t match their expectations. I wasn’t sure about exposing him so publicly, but as the walk day neared we decided it was important to join the walk.

Before the walk I felt isolated and alone. But when we arrived at the walk I was astounded by the number of people there. As we joined the walkers I was amazed at the cheers for the teams, the love, acceptance and support I felt for the parents, the siblings and especially the person with autism. I was so moved by the acceptance I struggled to hold back tears...several times. I loved feeling engulfed, enveloped and enwrapped in acceptance. It was validating to me as a parent. People understood the struggles and challenges that Debbie and I have and will faced. It was accepting of Itai, for all of the challenges he will face as a sibling who loves and accepts his brother. And of course, it was accepting of Avi for who he is, whatever he is and who he can be.
My only regret about attending last year's walk is that we didn't do more to include others. I saw huge teams gathering around one child with flags and t-shirts and cheers. How amazing for that child, who probably rarely gets recognized and praised to be surrounded, absolutely surrounded, by love. This is why I'm pestering everyone. I love Autism Speaks. I love the support and education they provide. I love the research they are doing and I want to help them achieve these goals, but my real goal is showing Avi that he is not alone. So thank you for joining us, for surrounding him and us.
The most important part of the walk for me was learning that I was not alone. I was surrounded by people who understood and cared. I wanted every parent who was struggling with autism to feel so much love and compassion. I hope that every year is as magical as the first walk we joined.

On a different topic I'm looking for some suggestions. I've been thinking about little Itai. It's not uncommon for the sibling of a child with special needs to feel left out or forgotten. I've been thinking that since the walk will focus a lot of indirect and direct attention on Avi and Itai may feel lost in the shuffle. I would like to start a tradition of an Itai day. Every year on some set day other than his birthday (I haven't picked one yet) where everything is focused on Itai. What kind of things do you think you would like? How can I make sure Itai knows how much we love and respect him? Let me know what you think, I'd appreciate it!

Friday, February 19, 2010

Celebration #1

Avi woke up on the morning of his birthday to find that the birthday elves had put up two birthday banners. He and Itai were very interested in the Elmo banner. Avi tried to reach it while Itai wanted to be lifted up to give Elmo a kiss only to be set back down.

Poor Avi had to go to school on his birthday leaving Itai to prepare for the days celebrations. Don't you always put on your best heels for a party?

Itai got first dibs on the balloon. Once Avi came home from school there was much less love involved with the balloon. One balloon and two boys just doesn't work well.

What could be better than a balloon? How about a singing Elmo birthday card? Avi says thank you cousins, aunt and uncle for the card! (Itai says thanks too; he plays with it as often as he can steal it.)

And to top off the first celebration? Dinner with Savta and a piece of cake delivered with drums, tambourines and right in the middle of the meal! Yum, yum! One day of celebration down, two to go.

Monday, February 15, 2010

Happy Birthday Avi

I know everyone says this and it's almost cliche, but I really can not believe four years have passed since Avi's birthday. The last four years have brought a lot of changes, some expected, some not. It is a little sappy, but I have to take a quick trip down memory lane. Thank you for allowing me my indulgences.
Avi started out at 2 lbs 14 oz. He was our first little miracle.

I am amazed looking back at these picture. I really am stunned that he was so small. I remember him being small, but looking back he was just tiny!

I guess I should have realized then that life was going to be an continuous adventure. Oh well, I figured it out eventually.

Can you believe that we loved his cry? We really did! Every time he cried we smiled. Oh how the years change things. :)

The funny thing is he still sleeps like this. (Minus the IV, the wires and the isolette.)

He's grown A LOT since then and has made some really amazing strides. I wonder what changes he'll make in the next four years.

Happy Birthday to our little Avshalom. Ima says, may there be many more to come. I hope your birthday is amazing and your year is better than the best!

Saturday, February 13, 2010

What I Wish Other People Knew About Having a Child with Autism

(Brace yourselves, this is a long one.)
There is far more about having a child with autism that I wish people could understand than I could write here. There is far more about having a child with autism that I wish I could understand than I could ever write. My experiences as the parent of a child with autism have led me to wish people could understand these things. Since everyone reading this understands really well, some better than I, I’m preaching to the choir, but I have to get this out of my system.

First off, autism is not contagious. Please don’t be afraid to let your children play with mine. Avi is as gentle as they come and he really won’t hurt your children. I’m probably more afraid of having him play with your children than you are! He really is kind and tender. He doesn’t understanding pushing and shoving. He loves other children, but his chances for social play are limited. If you are concerned that he won’t be able to handle something or play the way your children do, ask me about it. But please, don’t be afraid to let him play.

I know it may seem like he isn’t getting anything out of playing with your children, but he is…and so am I. He may run in circles, flap his hands and avoid touching your children or directly interacting with them, but the smile on his face is undeniable. He loves it. He loves having children his age to play with even though he isn’t great at it. I love watching him and a little adult interaction wouldn’t kill me either!

I know that I’ve already mentioned this, but he is not a they; he is a he. I haven’t met all the autistic children in the world so I don’t know what “they” do, but I know what my son does. If you’re curious about autism, ask me about him or it (autism, not Avi), please. I understand this is a petty annoyance, but imagine if I never spoke about your child specifically. “They” is impersonal; it is divisive. It creates an “us” and “them” feeling. It implies that his autism supersedes his identity as a person. I will try to be understanding if you do say it, but I would love it if you would acknowledge him as a person apart from his diagnosis.

My child is not retarded; he has autism. There is a difference, a very big difference. If we’re discussing medical terms autistic and retarded are not synonymous. If we’re speaking colloquially, the word retarded is pejorative. So please, try to avoid saying things like, “I have never really had any experience with retarded children.” Or “He doesn’t look retarded.” I will love you even more if you don’t use the word at all to describe something that is stupid.

I know this one may seem difficult to believe after reading the last two, but please, don’t be afraid to talk to me. Talk to me about autism; talk to me about anything! I’m not afraid to discuss the subject of autism, the feelings I felt initially and how I feel now or anything in between. I don’t know very much about cars, sports or “Lost,” but try it anyway. Just come over and talk to me. I love talking and my opportunities for social interaction are also limited so I would just love it if you started up a conversation.

This seems like a good point to explain this: I know I talk about autism a lot, but my children are a pretty big part of my life and autism is a pretty big part of theirs. If you don’t want to talk about it, change the subject, I’ll get the hint. I understand that autism affects only a very small amount of people, but that is why I am so vocal. I promise I’m not entirely one dimensional. I enjoy listening to other’s talk and learning from them. Honestly, I understand that you get tired of hearing about it, so help me find a different topic.

You may see me in a store with a child whose temper tantrum makes you want to turn and run the other way. You might see me feeling very frustrated with the tantrum, the looks from everyone around and frustrated with comments. Please understand even though my child does not act like yours it does not mean that I am a bad parent. I may curb some of his behaviors that seem innocuous to you, but I understand that they are antecedents to behaviors you probably don’t want to see. I may let him do things that you may think are strange, even bizarre, but I understand that there are certain things he needs to do to balance himself. I appreciate suggestions, but please keep in mind that you probably aren’t the first person to wonder if I know what I’m doing. (Ok I admit it, I don’t REALLY know what I’m doing.)

That said, I'm not perfect. I know I'm not. I make mistakes all the time. I make mistakes in parenting, at work, in school and in every other aspect of my life. I don't want to make mistakes, but I am human. Mistakes come with the territory. But the important thing is that I am trying to be good. I try to be a good father, a good friend, a good worker and student.

I know that I may seem independent but I absolutely want your support. I may not ask for help, but I probably need it. If you think of something you can do just ask if I’d be ok with it. If you can’t think of anything but still want to help, ask if there is anything you could do. I may say I’m fine, that I have everything under control, but your offer means more than you know. It is difficult for me to ask for and accept help, especially because I definitely need it and have asked so many people before. I want you to be an ally, a friend and team member (this is a hint join here or donate here!). I love it when people join our corner. I love the people who support my kids!

Yes, having a child with autism is hard. It is emotionally draining and financially taxing, but I absolutely love my children. I love them far more than I ever thought possible. I once saw a slogan: “autism – the lottery you never wanted to win.” It’s true. I never thought about how great speech therapy would be or how nice the dilemma of telling a person or just letting them wonder might be, but now that it is part of my life, I would never want to forget it. That doesn’t mean that I’m not going to continue to chase treatments and “cures,” but autism has taught me things that little else could. My children bring me more happiness than I deserve. I love them as much as you love your children. Autism could never change that, nothing could. Since this is the depth of my love, of course I want you to love them too. The world may see differences and peculiarities, but I see uniqueness and beauty. This is probably the most important of all the things I wish people knew about having a child with autism: I love my children, both of them, always have, and always will.

Thursday, February 11, 2010

Valentine's Day

Once upon a time a beautiful princess was born in a distant land. She was happy (though you couldn't tell it from this picture.) She was the cutest little girl in all the land.

She was so loved that the people searched the kingdom far and wide to bring her the largest birthday candle in all the land. The candle made her very happy.

Eventually this beautiful princess was taken into the king's army. There she became the most beautiful soldier in the army. All the other soldiers were afraid of her because of her great beauty and because she wrote more tickets than any other princess.
Later she was sent to another land even farther away. In this new land they spoke a strange language, but she soon found many friends. Before long she was the most loved foreigner in this strange land. Just when she was comfortable there and sure that she wanted to stay her father came to bring her home. Unfortunately her father was robbed of his traveling papers by a villain. Through the use of magical powers they were able to find his papers at the nearest town guard station.

Once again she was sent to a far away land. In this land she found herself teaching people about her home and her language and once again the people loved her. She met many people in her time in this far away land, but it was on a day in February that she met the luckiest man in the world. His luck was so great that she, after much tutoring and teasing, remembered his name and agreed to accompany him to dinner.

His luck was strong enough to spend all of her valuable time with him. One day he asked her to spend the rest of eternity with her. Luckily for him he was the luckiest man on earth otherwise he never would have been able to convince her to marry him.
Happy Valentine's Day to my original and only Valentine. I love you, Deborah. Thank you for making me the luckiest man on earth.

Wednesday, February 10, 2010

My Little Grown Up

This has been a pretty big week for Itai. He hasn't quite turned 18 months old yet, but he's close enough for his first week in nursery. He loved it! A few weeks ago I took him into the nursery to introduce him to the idea so when we walked in on Sunday he was ready to go. I hadn't even gotten to the top of the stairs when Itai started pointing at the ground trying to wiggle out of my arms.

He ran into the toy area and never looked back. I stayed in the wings, waiting for him to notice that I had left him there, but either he already knew or he just didn't care. Either way he was happy with the Elmo phone and the strangers around him. Two hours later he was still having fun and not really excited about leaving.

Later this week he had has first day of day care. Once again he loved it. Debbie dropped him off and he was excited to leave again. When I came to pick him up he was playing on the playground and was really not ready to leave. Neither was Avi. He came with me to pick Itai up and he loved it there.

He also has some new favorite words: fish, cracker and dog. He loves the dog that lives in the house behind us, the fish at Walmart, PetCo and the Aquarium and well crackers anytime, anywhere.
Today he touched a stingray, a starfish and some sort of crab. This is why we LOVE the aquarium! (Everyone but Debbie that is!)
Yay Itai!

(Did you notice that he's even wearing pants in most of the pictures?)
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