United States of Autism

Yesterday I watched this documentary on NetFlix, called "United States of Autism". 

It was an 1hour and 25 min of crying, smiling, feeling heart broken to optimistic. It is the story of Richard Everts cross country 40 day trek to speak to different families about their experience with autism. Richard himself has a son who has autism. The families range from very high functioning to severe autism, he even interviews some adults who also have autism. Overall, I thought it was a great film. However, during the course of the film the concept of autism being linked to vaccinations is brought up several times. I've said this repeatedly but here goes .......I, for one, DO NOT care what caused my child's autism. I don't know if vaccines were involved (that theory has been debunked by the medical community) with that being said is there a slight fear when he gets new vaccinations ....Absolutely! I do not know if he has autism because of a genetic connection, I do not know if something in the environment caused it.....hell maybe I held him a little too tightly as a newborn...maybe I gave him a little too much banana baby food or peach or strawberries or whatever. All I know is that my child has autism now. That I need to deal with the now and beyond not the was. If something did cause his autism...well unfortunately I don't own a time machine ala Bill and Ted's ( like my random 80s reference?) and cannot go back in time and change anything.  So why should I invest my energy in that? When my energy is needed for so much more. It's a film I believe every parent who has a child with autism should see. Sometimes or many times as an autism parent we feel alone, just a solitary woman or man fighting against autism. This film shows how diverse and how many families are affected by it. It's also a film I think people who don't have kids with autism or don't know someone with autism should definitely watch...probably more so than those who do. It will raise awareness and you will gain knowledge to something that is becoming an all too real issue in the world. Autism rates are growing exponentially,  it's not going away .... It's time for people to educate themselves with knowledge and compassion. 

Just last week I went to see a specialist for myself. It was my first time seeing her. During the initial getting to know you process of the appointment she asked me what I did for a living. I explained to her that I'm a stay at home mom, who has a 12 yr old daughter and a 4 yr old special needs son. She then asked me what did my son have.  I explained to her he has autism, epilepsy and an arachnoid cyst. Her response was "oh, I'm sorry ". I found myself at a loss for words at that moment. I had never had anyone say that to me when talking about Kaleo. Was that an appropriate reaction from her?  Should I have been thankful for it ? Or should I have been insulted?  Is that a correct reaction and response I should expect from people? More importantly what's wrong with me for not even being sure how I should feel about it lol. 

                                 My Star shine ☀️☀️☀️

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.