Life is Hooootisss!: And So Saf Said, "Let Plex Eat Cake!"

We had a busy week.

Mike attended one of the 6 mandatory classes we have to take through the county Regional Center to continue to receive any form of behavioral services. They started the 3 hour class off by using a Sea World whale training analogy, comparing the whales to our kids. Very dehumanizing. Also, what poor timing given the trainer killed by her whale in recent weeks...a point another parent pointed out to the guy giving the analogy! This guy is a trained professional hired by the state and he's comparing children with special needs to animals....comparing treatment to training. Doesn't get more sad than that.

Unfortunately, its a not an anomaly. We experience stuff like that in relation to Saf all the time. People always like to tell us how "normal" she looks. Uh, she is normal, she just isn't neurotypical or typically developing. People often say things like, "oh, she's autistic". People would NEVER refer to a person with cancer as cancer. Saf is not autistic. Saf is a little girl, a daughter, a big sister, a friend. She is a lot of things, she just so happens to be living with autism. I'm sure these things may seem petty, and matters of political correctness and semantics......but those are all examples of how we as a society systematically dehumanize and marginalize people with disabilities. I don't think most of us do it intentionally or with malice, its just a really effective way to keep things this scary and heartbreaking an arm's length away. When we compartmentalize people, we absolve ourselves of the responsibility of trying to understand them and their differences. So, its something we're working on stopping...within ourselves and others.

Showtime is playing a documentary, "Dad's in Heaven with Nixon", in honor of autism awareness month. It looks at the journey of a man with living with autism, and living independently due to the support and perseverance of his family. It's reviews look great.......and I almost watched it. I turned it on, got about 10 minutes into it and had to stop. Once it went to a scene of the man, now an adult, sitting on a park bench with his elderly mother I broke down. See, Mike and I are all too aware of the reality that one day we'll be old and one day we'll die. When we're gone, what will happen to Saf? Will she understand why we are gone? Will she be able to care for herself or will we have to rely on others to care for her? Will people be kind to her and take care of her properly? Will she be happy? I always tell Mike how lucky he is because he's older than me. He'll likely get to die knowing that I'm still here to take care of our baby. It may seem morbid, but you have no idea what a gift that is. When I go, she'll be all alone. It is a thought that is absolutely unbearable. She's only 3, and we already have to plan for our death and the stability of her life beyond ours. I cannot begin to explain how terrifying that is. She'll always be our baby and the thought of her being alone, confused, and scared makes me sick...literally sick. This is why we take every aspect of her care now so very seriously. We look at everything we do now as building blocks for the future and her quality of life. Its a tremendous responsibility and there is no room for failure. Just one of the many thoughts that are ever present and weigh heavy on our minds.

Now, on to the fun........a recap of our week. The girls had to go to the doctor. It went as well as we expected...it was HORRIBLE. Saf was terrified and panicked, her lips actually shaking as if she were freezing because she was so overwhelmed. Good thing we went, though, turns out Saf had a raging sinus infection. Nixi got a clean bill of health, and we had a quite rest of the day recovering from the morning's events.

The girls got an aquarium for their birthdays, which we set up mid-week. Total success! They LOVE it! Its stocked with 2 african dwarf frogs and some fish and its just plain good times for all. Saf ran out and saw it and it was non-stop happy feet. When Saf is excited and happy she sort of runs in place and we call it happy feet. Nixi loves it and if you ask her where her fish are, she'll point to the tank and say "ish". Very cool!

For Saf's birthday we went to a road side petting zoo. She just had the best time ever. She was super brave and touched the snout of a donkey! The whole day, minus a blip here and there, was the best day she has had in probably 2 years. She even ate a mini cupcake! At the end of the night, she giggled and hugged me and both Mike and I knew that she knew today was a special day. She has asked me to thank everyone for thinking of her on her birthday. She's in the process of deciding on what cool things she'll buy with all of her birthday money...and, no, she's NOT getting a donkey no matter how much she wants one! She may not have known it was her birthday, but she absolutely knew it was a special day.

Today we went back so Saf could show her dad all of the cool animals, it was just as magical as it was on her birthday...only maybe a bit more so, because we were all there together. Nixi had a close encounter with a goat....turns out goats scare her. Who knew? All in all, what a great way to cap off a pretty neat week.

This week Saf will have her first speech and OT sessions with her new therapists from the school district. As long as I can get her to get out of the car, I think we'll be ok. This is easier said than done, but I'm thinking a promise of the petting zoo or pet store may just do the trick! We'll see.

So, have a great week all!

Sarah

Winston just has a way with the Seifert ladies....