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.


Valerie said...

I know I've already said it, but CONGRATULATIONS!!! And Avi and you and Debbie deserve it. It is sad that treatments are not covered. It makes no sense. How is it a less important need than so many other medical needs that are covered??? I guess it takes a long time to educate and change some things (politics, medicine...).

Terry Family said...

What an AMAZING week! We are so happy for you guys! I remember being on the Pingree preschool waiting list, and thinking that there was no way we would EVER be accepted. I was SO excited to hear that Avi got in! He will learn and grow SO much from that program -- I have heard and seen amazing things about the school, and it is such a beautiful blessing that he has been accepted. Yay!

I will never understand why insurance companies don't cover Autism. When Boston first received his diagnosis and I battled with our insurance company, the insarance lady told me that it wasn't "medically necessary" for services to be covered for kids with Autism because, unlike children with other mental disorders,like depression, kids with Autism weren't in danger of committing suicide or hurting others. Wow. It's a pretty messed up system, that's for sure. BUT, at least you got Medicaid!! YAAY!!!

I'm so glad that things have been going so well with you guys! What does this new intensive therapy involve? I would love to hear the details. Good luck!

Stella Andes said...

Such great news you have had this past week! I know it comes in spurts, but I'm glad you've had a spurt of it lately!

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