real life

I love to share the good and shiny parts. Partly because there are just so dang many. It's so much better than I ever ever expected: this little life of mine. Some moments feel like a movie, a golden light casts over my entire view. A good movie- with a happy ending. There's been moments where I've just stopped time and thought- Wow, I am so grateful for this life, these boys, this community and these people in this particular slice of life we are in right now. I never want to make my boys autism about ME. When Greyson was newly diagnosed, I complained about it- this terrible beast that stole the light from his clear blue eyes. I went to one Parent Group meeting and everyone took turns complaining about their life, trying to one up each other's woe is me story. Everyone grieves and heals differently, and I realized that way does not work for me as I sobbed into my steering wheel as soon as I got into my car afterwards. And then in my seeking of knowledge and in my pain I softened. My empathy grew. I heard from adult autistics who shared how gutting it was to hear, "I love my child but I hate their autism", because where does that line of separation lie? They said it felt like hearing, "I hate my child." So every day I try to grow and learn and change into a better Mother. The kind of Mother my boys are worthy of having. 

But sometimes the mental load of it all threatens to crush me. When I wake up at 3am and wonder who will visit them when I die as my heart pounds into my covers. I read gutting statistics like people with disabilities are three times as likely to be sexually abused. I wonder who will be their legal guardian and hope they will be taken care of. 

Early intervention was so hard. Behavior Therapy is best delivered in the natural environment, so we were home 30 hours a week, Monday through Friday, sharing our home with therapists. Mostly only leaving for a quick trip to our neighborhood playground or our two hours of Speech Therapy each week. I am so grateful for that time with them, and grateful for the incredible team no one other than God could have provided me with. I am so lucky I didn't have to work and I could show up for Mom'ing in the way I wanted to and needed to at the time. 

The mental load of advocating against a District that was failing their students with disabilities daily chipped away at my soul little by little. I remember little moments, the First Grade Teacher who told me having Parker in her reading group "was a nightmare because he doesn't pay attention to anything",after I asked how he was doing in class. I remember having to fight for them to let him have lunch at the same time as general education peers instead of at a different lunch time where all the kids with disabilities sat in the back at a table alone. I remember going to so many board meetings, some ending late at night, where I had to walk back to my far away parked car downtown alone. I remember practicing my three minute statement to the School Board over and over and over again, praying that this time someone would listen to me this time. It's an honor to be able to speak up for such an important cause. You can watch my Board Statements HERE and HERE.

Sometimes fighting for something that means so much to you, can rip out your heart.  Every new year of life is left with new challenges and I go from advanced to beginner over and over again. You can't even ask your friends who also have disabled kids because every child and every need and every therapist and every school and every Teacher and every placement and every opportunity and every challenge is so incredibly different. A person with autism can grow up to be an investment banker, or grow up to roam the aisles of Target while supervised as part of their Adult Day Program. Most of us are left floating somewhere in the middle.

I meet with Greyson and Parker's IEP team and work on coming up with goals and try to be an equal member of their Individualized Education as the law provides. But the whole process is so dang overwhelming and complicated and so much is left up to interpretation. Imagine trying to be an equal member of a team when they all meet frequently and work for the same company. Plus you don't know: all the placement options, the language they use, the curriculum available, the possible placements, the teaching methods, and all the rules. Some schools are required to use certain curriculum- even if it sucks- but they can't tell you that. They just have to toe the company line. They have to teach aligned to same grade standards instead of current developmental baselines which makes no sense to me at all, because if they could learn what their age equivalent peers are learning they wouldn't need an IEP.

There are times I feel so overwhelmed and so alone. I've left meetings over their future and walked briskly to my car so I can cry once I get in and shut the door. I research constantly and know my boys so well, yet it still feels so hard trying to get them what they need. I hired an advocate once for help, but she was adversarial and a little crazy so I don't think I'll do that again. 

Sometimes this has nothing to do with how wonderful the other members of the team are- it just is, and you can see how it inherently makes it harder to feel like part of the team when you are the parent.

I'm by no means a School expert, but I am a Greyson and Parker expert. At least the closest one can get to being one on earth. I used to make these sheets each new year of school, but lately I've made entire videos. If you want to see one, click HERE.

So here I sit and share the less shiny parts with you. Seeing some school work samples of Grey's from yesterday pulled me into a tailspin and I'm writing to you now in the hopes of pulling myself out. Sometimes when you share the monsters out loud, they lose their scariness. 

Even when it's hard I'm still grateful for this story that I get to live. Life is a package deal, you can't sift out the bad or the hard parts so you can only live the good ones. I'll take them all.