Monday, June 29, 2009

Ant Patrol

Shannon is on ant patrol. I don't have any concerns about her vision but if I had they would be unfounded. She can spot an ant a mile away. An ant is any insect that crawl. She likes to bend down and touch them and then call "come here ant, it's Shannon"

Now, flies (any insect that flies) are a different story. She does not like them at all. She yells "shoo fly, go 'way." Again, they don't pay attention to her.

Saturday, June 27, 2009

Bikini girls

We have a bigger blow up pool. They are having a great time.

Thursday, June 25, 2009

Monday, June 22, 2009

Got a spot

We got a spot for OT. This a wonder of wonders.

When I took Lauren to her OT assessment, I was told that the wait time for any session was about 6 months. If I needed an early morning or late afternoon session that did not interfere with school, I could expect to wait about a year. Crazy isn't it?

The phone rang to day and offered her a spot from 7:15 8:00 Friday mornings. It will work out great. Bob doesn't work on Thursdays due to Girl Scouts so he wont' be getting home at 2:00 and have to leave the house at 6:45. It also gives hime plenty of time to get back here to get her on the bus and Ellie to preschool.

On an even more surprising note, our insurance covered her inital evaluation at 100%. I didn't have to file an appeal or anything. I'm not sure what to make of it.

Sunday, June 21, 2009


We woke up to this in our screen in porch. The girls have leaned on the door and the screen is kind of hanging there. I'm sure that's how he got in.

Anyway, we had three different reactions. Ellie jumped up on a chair and screamed "Daddy, it's a rat. Get it out, get it out!"

Lauren pointed and say "Daddy, can we keep it?"

Then Bob scared it off and Shannon kept looking around saying "Where kitty go? Kitty come back. It Shannon."

Wednesday, June 17, 2009


I believe that the Bible is God breathed and in infalliable. I believe that in Gensis, when creation is discussed, that the world was created in 7 24 hour days. I don't believe in macro evolution. Macro evolution is the evolution from species to species.

One of the premises of evolution is that mutations help create change. It is mutations that created a variation in the species. That variation usually helps the members effected adapt in some way. The ones without the mutation die out. They pass that mutation on to their offspring and in multiple generations you eventually have only that mutations displayed. That's the real short version of a complicated theory.

I believe the theory is faulty. It is based upon the belief that mutations are good things. It is based on the belief that a mutation is helpful.

Cysic Fibrosis is a mutation. In that mutation, the body does not produce one enzyme. It ends up being catastrophic for the person effected. It causes decreased lung function and digestive problems. All because the mucus that coats the lungs and digestive tract of a non-effected person, chokes the lungs and digestive tract of an effective person.

Lauren's chromosomes are mutated. She has a mutation on two chromosome. Because of those mutations, she was diagnosed with FTT at 5 months, she has decreased gross motor skills, she has fine motor skills that are delayed over 4 years. She has no impulse control and has extreme attention problems. She is also diagnosed with Autism.

Tell me again how this mutation is helpful?

Saturday, June 13, 2009

Results are in

We went to Lauren's neuro appointment. She has now has a new diagnosis. Chromosomal abnormality.

She has extra genetic materian, not a duplication, on chromosomes 5 and 22. The preliminary test showed that chromosome 2 was also effected. However, the FSH test showed that it was a false positive. It's not like Down Syndrome. She has the same amount of chromosomes as everyone else, there just happens to be more stuff on two of them.

It simply reaffirms what we have always felt. She does not have Autism in the traditional sense. Her neurologist has always felt that it's not just Autism. This proves that he is right.

He firmly believes that this explains everything from day 1. It explains the severe reflux, the severe ADHD, the total lack of impulse control, the autistic characteristics, the hypotonia, and dyspraxia.

As for what we do next, my neurologist will start researching in the journals. He's looking for descriptions of kids with similar disorders and a similar genetic profile. He may not find it. I joked that Lauren may be diagnosed with Krueger disorder.

I've looked at a little bit of information. However, it appears that we are very blessed. Some abnormalities on chromosome 5 include cru di chat syndrome and Treacher Colllins syndrome.

It is also likely that many with these genetic disorder are miscarried. I always knew Lauren has been determined to beat the odds.

Friday, June 12, 2009

Lights out at our house

So the big girls watched some show on Disney. It had to turn with turning off lights when people aren't in the room using them.

It's the "when people are in the room using them" we are having a problem with.

Sunday, June 7, 2009

Funny thing I heard today

Bob "don't use my toothbrush to buff your toes"

Saturday, June 6, 2009

She's 2

My Shannon is 2.

Don't worry, she got a bike just like her big sisters. Now, I just have to try to find her some streamers cause streamers on a bike is of the utmost importance.

Shannon has been such a sweet addition to our lives. She is the most impractical thing we have ever done. I wish all my impractical choices and descision would have ended up like this.

She has a wonderful giggle. I tell her I love her all the time. Now, everytime I do a sweet little toddler voice chimes in "I love you too Mommy".

What a sweet little girl!

Birthday girl with her sisters.

I got to pick the cake, she didn't care. I love Red Velvet.

She's got a bike like everyone else now!

Friday, June 5, 2009

I've decided I don't fit in

I really don't. I've never made friends easily and as an adult it is even worse.

I work full time so I'm not included with the stay at home moms. Then I get home and my husband rushes off to work (OK I lie, we meet in the parking lot and then I drive the herd home). We are definetely an odd family.

But the thing that bothers me. I don't fit in with other families that have been effected by Autism.

Lauren is very high functioning kid on the Autism spectrum. She can speak not clearly but understandably. She can interact with others, not like I do or even what is socially acceptable but she can fake it for awhile. She loves to be with others. She may not know how to be with other kids her age but she wants to be with them.

I feel odd when I refer to her having Autism especially around someone else who chld's Autism has effected their family even more. I just feel out of place.

She is definetely not a normal child. I see that at Girl Scouts twice a month. She does not know how to iniate conversations with others. She'll say something and then will just keep repeating it.

I know kids try but she's just odd. We played Duck, Duck, Goose and she just ran around flapping her arms because she was so excited. No one would pick her. I was so sad but I didn't know what to do. I would have known exactly what to do, if she had been some other kid. But she's my kid! Luckily for me, my co-leader stepped in.

She doesn't get social cues. In her world and in her life, it is totally accceptable to stand nose to nose with someone. Not every other 6 year old agrees. She also still throws horrible fits if she doesn't get her way. I know this must scare the kids in her class off. They are now 6, not 2. They've moved on and can deal with disspaointment in a different way. Lauren can't.

I just wish she could have a friend or be invitied to a birthday party. I would consider the year a success then.

Thursday, June 4, 2009

Last Day of School for Lauren

Lauren's last day of school was today. I stand in amazement at what she has acomplished this year.

She is so much more social. I know that joining Girl Scouts was a wonderful idea for her. She actually initiates conversations with kids instead of simply repeating phrases. The other kids undestand her and respond to her with friendship (for the most part).

She met or made progress in most of her IEP goals except for writing. She is reading below grade level but she has come far. She was able to identify 0 letters on her 1st day of kindergarten. Today, she came name all upper and lower case letters. She can identify 43 sight words. Her goal was 27.

She is making slow, very slow progress with writing and fine motor skills.

Bob and I agonized over this descision on when to send her to kindergarten. Should we send her with her age group? Or should we do another year of preshcool? You would have thought we were sending the kid to college. When I went to her first IEP meeting, in 2/09, what we needed to do was so clear. I needed to unenroll her from her preschool and put her in a 50/50 class at the public preschool. Anything else would have been wrong. This descision was not clear; it was very, very grey. But it was the right descision. I can't imagine her still being in preschool now.

All ready for the last day of kindergarten!

Wednesday, June 3, 2009

Tuesday, June 2, 2009

Bike Rider Girls

The girls both got bikes for their birthday. They would like nothing better than to ride those bikes all day everyday. Shannon runs around yelling "my bike, my bike". Is it any wonder what she is getting on her birthday?

Ellie on her Tinker Bell bike.

Lauren is doing so much better riding her bike. When she first started in March, Bob and I had to hold on to her on both sides. It was very much like we had just taken off the training wheels but she still had training wheels on. She is very independent now.

And they are off

Monday, June 1, 2009

Best Buddies

Ellie and I are best buddies. That is what she tells me all the time. She tells her teachers and anyone else that will listen that I'm her best buddy.