Friday, December 13, 2013

Adapting to the World

Scott worked from home today. It is Friday, another opportunity for us to catch the play date my friend Dynee hosts every Friday. It's a play date centered around children with disabilities. She's been having these play dates for about a month. We have missed every single one, and we will miss today's. Our life stories as of the past couple of years have both touched on some very similar happenings. Her son was diagnosed, she has been struggling with WESD and she is unbelievably frustrated at the lack of services here in Salem. Our sons are just months apart. She spoke at the capital during an ASD event. The head of WESD was present. She told her story, which centered around WESD failing to give adequate services to her son. The WESD man was pissed. This did get her son 2 days a week of intensive classroom time through the rest of the summer (I would say therapy but what they do doesn't constitute as anything near therapy to me). She caused a wave & got some short-term change. That is extremely difficult to do when it comes to WESD. Honestly, I didn't think it was possible. Our recent, similar life events will forever change our lives, our family's lives and the ones we love. These conditions are unexplainable.  They pose a million questions you will never find a definitive answer to. Our similar circumstances over the past 2 years are ones that have rained more change on our lives than anything else probably ever will. I never expected these things. And for a long time the thought of, "It shouldn't be this way" lived in the back of my head. It still lingers, and it's true. But nothing is "wrong", our lives just aren't the same as most. We have to rearrange our lives & do things in entirely new ways now. We are presented with challenges I would guess most people will never have before them. BUT, we get to see the world through new eyes, not many people can say they get to do that. These eyes give us an entirely new perception of life as well as a new meaning to life. Judah has been presented with more challenges than any toddler should ever have to deal with in a lifetime. We are told time & time again that his difficult life will always be present for him. The world adapts to us, we have created many things to make our lives easier and more pleasurable. But the world does not adapt to him. He needs different things than most to live a happy & full life. The world does not adapt to him, he has to adapt to it. Take a minute to imagine that.

The case manager stopped by today, an hour early. I was outside, wrench in hand, while Sebastian held his bike. He needed his seat raised, he has outgrown that bike. I scattered to collect all of the kids & got them inside. Pixie was out of her cage & jumping all over the lady. I felt like we had a social worker present making an unexpected house call to see what the "real" living situation was like. Realistically, she got out of her last appointment early & just came over without calling. They may be providing diapers soon. I'm still curious to hear about how the new "K" plan is going to change things - we are very hopeful.

We went to Judah's therapist appointment  (behavioral) today. Scott and I had a session with this therapist a couple weeks ago to talk about Judah & to decide if she was a good fit. Today was Judah's first time meeting her. Unfortunately bringing Willow along was a bad plan. We left as soon as we got there & now have to reschedule. She had told us to bring only Judah, but I figured it wouldn't matter if we brought Willow along. At least this lady wants to be 100% focused and seems to take her job incredibly seriously. I respect her & am hopeful in this situation as well. Scott, not so much, but not because of today.

Scott went to game with friends tonight. I worked on family calendars (Christmas gifts) for quite a while. The kids sort of went crazy. They stayed up much past their bedtime because I needed to get the calendars done before 10 or 11pm. Eventually they were climbing my chair, Willow took off her diaper & peed on the floor, Sebastian walked in with his scissors and cut a big chunk of his bangs off right in front of me. It was hell. That was the first time one of our children has cut their own hair. I knew it was going to happen at some point.

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