Tuesday, August 30, 2011


Well, we have decided to disclose his diagnosis to our insurance company so that we can continue to get him therapy. This is a big deal for us, disclosure. Not because we are not open, but once you disclose the information, it is no longer in your control. For example, once our insurance carrier knows they will share his info with all future insurance he will have. Also, the school will probably know at some point and it will follow him through high school and into college even. I hope he is never discriminated against, or denied coverage based on pre-existing condition.
As a parent you try to make the best decisions for your kid. You have to weigh current benefits against future needs. The future is a risk and a gamble. But if in the future insurers decided to deny benefits to individuals with ASD based on pre-existing condition there would be a lot of outcry since ASD affects a large population.
You want to give your kid every possible opportunity to succeed in life.

Friday, August 26, 2011

priceless pal

We have a dinosaur living with us named Russe (pronounced roo-see). She loves to hang out with Calder and unlike Calder, Russe likes to try new foods and she even eats vegetables. She is after all a brachiosaurus. She likes her hair washed and is generally easy going. She sat at the foot of Calder's bed probably two years...waiting for a little boys imagination to spark. A part of development often never attained in those with autism. Or attained by many hours of therapy and prompting. Many times I would say to myself "oh I should get rid of this stuffed animal. Its taking up space, collecting dust. He'll never play with it. He doesn't do pretend play. He is cerebral and very literal".

When a child hits a milestone it is a happy and fun occasion. E. had her first giggle yesterday, what fun. But when a child misses just about every milestone by 18 months or so, attaining a milestone is joyous but also it is a huge relief.

Thank God for stuffed animals. Thank God for dinosaurs. Thank God I never got rid of it. Thank you Russe. You are priceless to me.

Thursday, August 25, 2011

38 minutes of opera!

We made it through the parking lot and into the house to find our seats. Things were going as good as they could. Whew. After sitting for about 5 minutes Calder says to me, "we have to get out of here". If he can just hang in there until the music starts he'll get interested. It's a very visual opera.

After we are about 5 minutes in he says again, loud enough for a few of the people sitting around us to hear,"we gotta get out of here". I whisper to him let's wait 5 minutes until we see Kitty (the main character ). He says don't do that. Don't tell me a secret. Ok scene change, come and capture my borderline restless 5 year olds attention.

Going great. He is recognizing the characters we have shown him for two weeks now. He sits on my lap, which is sweet...another 10 minutes go by. I notice that he is really paying attention. Cool. Relief. After 38 minutes from the moment the orchestra started he turns to me again saying "we gotta get outta here". I say "are you sure you don't want to see just 5 more minutes...see the savage in his cage?" He says "absolutely". Well there it was. The kindest, whispered words...I had to respect that. I had told myself before that I would not force this on him. So after 38 minutes of opera we went home.

the letter "P" blows out candles.

Who knew that blowing out candles would be scary. Our son is not a big fan of birthday parties. He has a lot of anxiety when it comes to going to a friends birthday. I've asked him what it was that bothered him. He tells me "I don't like the happy birthday song". Hmmmm. And the candles and the cake....he does like the party hats though!

So in a few days he will have his 5th birthday party that he is in charge of. He picked which friends he wanted to come. He picked his theme. And he decided that we will make a cake for his friends to eat (oh yeah, and he loves to bake).
While a friend was in town recently Calder got to see her blow out candles. Many kids love to blow out candles. Calder is afraid of the heat. He would watch her but from the other room.

Calder loves the alphabet. Many of his favorite games involve playing with letters. When we found out that sounding the letter "P" can actually blow out a candle he was happy as a lark! We've also found that "qu" also blows out candles. But most letters will not blow out that makes P and QU pretty special.

Wednesday, August 24, 2011

what this is

So I do sit up at night after the kiddos are tucked away in bed. It is the only quiet time in our home, as many parents would say. For me, this is a place to be during this quiet time.

Tomorrow night I will be attempting to take Calder to his first opera. Since hubby is the TD at the SFO we felt like this was an opportunity not to be missed. We have been preparing for weeks by creating social stories. We even have a huge map of the house seating chart and we can find exactly where we will be sitting. We've arranged to be sitting by ourselves, away from the main cluster of folks. Also hubby has made a condensed, kid size story of the opera we are going to see "The Last Savage". It has drawings made from designer renderings and set draftings. Well see how this goes.

We have learned how to "aim for success". This means if we just get through the parking lot and even to our seat then we have "succeeded". Nevermind actually getting through an entire opera. I know I didn't get through my first opera. We have learned that you just have to let go of expectations. Because that is what they are..."your" expectations, often not representing any reality. This can cause great pain..when you think something should be a certain way and it just isnt going to be. I have learned that I do not get to be the parent I thought I would get to be, instead I am the parent I need to be.

Ever since the moment a child is born we have expectations. It is a natural thing. But as we get to know that child, ASD or not, we find the specifics of a personality. Sometimes our dreams for that child, or for ourselves as a parent, fly out the window. Some more than others.