Under the waves....

It's been a really long time since I have written anything. I've just been so busy with the kids, myself and just daily running around.

Leilani finished school and is officially on summer break. She started swimming class this week and is really enjoying it.  Kaleo has year round school, so he won't be done until mid-August...then he gets a two week break. Hoping to be able to surprise the kids with a little vacation during that time...but that's still up in the air. 

Kaleo's medical appointments are still as plentiful as ever. His seizure meds were increased a couple of weeks ago. Hoping to get to the correct dosage to control his seizures. Another 24 hr EEG will be repeated in August. They are trying to figure out if his Arachnoid brain cyst is in anyway related to his seizures. 

The white area at the rear of the skull is the cyst

 Another view..it's the black area at the base of the skull. 

We did not know about this cyst up until a year ago. It's something Kaleo was born with and the doctors feel that it was caused by a stroke that he must've had in utero. It's just another thing added to his ever growing list of medical issues. 

On Monday he went to see his orthopedic doc. He decided on three more months of using the AFOs and then surgery. Luckily, wearing his leg braces as not been an issue at all..he actually really enjoys wearing his "superhero legs" as he calls them. He says they give him super powers. He says the same about his medical alert bracelet. Although sometimes he gets overwhelmed and at those times he will say to take off his superpowers because they're too strong.

As always we continue to take one day at a time and enjoy all the beautiful unpredictable moments. 

Ever felt unwanted?

Today I came across this article Child asked to leave restaurant over facial scars from dog attack

It took me back to a situation we experienced a few months prior to Kaleo's diagnosis. We had to attend a meeting at Leilani's school regarding the upcoming statewide exams. The meeting was held in her classroom and was full of parents. We took our seats and Kaleo who was about 15-16 months sat in his stroller and was babbling to himself-he was nonverbal at that point. We were there about half an hour before we were asked to leave because Kaleo was "talking" too much. I will repeat my prior statement- he was nonverbal at that point. We were confused, taken aback and frankly hurt by the actions of her teacher. That same night I wrote her an email

Her teacher did not respond to this email...I then followed up with another email telling her I wanted to have a meeting with her. She eventually did respond and we set up a date to meet. When I showed up to the meeting the assistant principal joined us. Long story short..they both apologized for what happened. I made sure to let them know that the actions of the teacher were highly unprofessional. I told her if she had the secret as to how tell a toddler to be quiet and have them fully comply then she should let the rest of us in on the secret. Again, this was prior to Kaleo's diagnosis but I already knew something was going on with him.

I continue to experience the stares and unsolicited advice from people when Kaleo is having a meltdown. I've become accustomed to it and it doesn't phase me anymore. With that being said this experience on 1/26/12 was the first and last time I have left somewhere because Kaleo was being seen as a nuisance. I refuse to ever be made to feel that way and more importantly have my child ever be made to feel that. Autism rates in the United States are now 1 in 68 children. Awareness, acceptance and compassion need to become part of the human psyche.

A couple of months before that school year ended, Leilani's teacher announced she was pregnant with her first child. I've often wondered if she ever felt what I did that night or if she has ever felt as if her child wasn't wanted.

This is an example of typical babbling Kaleo did at that time

A-DOR-AB-LE

A picture of Kaleo waiting for the school bus this morning. I'm sharing it simply because I find him adorable!!!