Monday, August 26, 2019

one more step

Today is just one step on your million mile journey. In the moment it can feel like your forever, but it's all so temporary and tiny. Even the big stuff. Endings crash into beginnings at a rapid pace at this time of the year. All an imbalanced mixture of excitement and pain and fear of loss and the unknown.

Man is being a human hard sometimes. Constant transitions and the reminder that we must (we must we must, please Chrissy- YOU must) learn how to let go. "You are in control of nothing," I remind myself by the day. Sometimes by the hour. Sometimes it's so concrete. But more often, it's hard for me to see the line between what I can control and what I can’t. It is SUCH a blurred line that overlaps in many places.

At the end of last school year, I wrote myself a SMART IEP goal. Something along the lines of: By September 2019, Chrissy will make an appointment with the following medical providers: OBGYN, Mammogram, Dentist, Ortho, Podiatrist, Primary Care with 100% accuracy, as measured by calendar data.

While Greyson was in a home school program, I seriously neglected this aspect of my life. Don't feel sorry for me- I found a way to work out and on occasion, stop by TJ MAXX way too often for retail therapy. But when I have "me time" I'd prefer not spend it getting my teeth cleaned or my boobs squished. But alas, I am old people, and old people are like old cars that you can not trade in for younger models. You just must find the problem and the missing part and then wait for it to come in as you also wait for the next thing to break down. You just hope it isn't your heart or your air conditioning or- I don't even remember what I'm talking about anymore. It's 8:30pm and all my brain is fit for is BRAVO TV. So forgive me.

I've been chipping away at making those appointments. (Atta girl, proud of you.) Today while at the Dentist (on a MONDAY no less. Warrior I say. Someone give me a trophy), the woman cleaning my teeth said- I see a spot. Not sure if it's a cavity or just a dark spot. Also, this part here feels a little sticky. We'll have the Dentist look at it. I don't mind going to the dentist, and I can totally handle dental work. But I can NOT handle waiting while the Dentist reviews my xrays to see if anything is wrong. I won't to yell out like I do when watching crime shows on TV.  "WHAT IS HAPPENING?! WHAT DOES 'STICKY' MEAN?! I BRUSHED MY TEETH BEFORE I CAME HERE AND DIDN'T FEEL ANYTHING STICKY.

So, the Dentist came in and said a spot under the crown I have is "sticky". But since I had a root canal on that tooth, the root could be decaying and I wouldn't feel it until it was too late. "This pocket here, could be decaying but we can't tell", he says, pointing at an xray where everything looks the same to me. (Me,  imagining a pocket of rotting funk in my mouth that takes over my face like a zombie unexpectedly.) I start swallowing rapidly while my eyes grow big as dinner plates- "Can we do something about it now?!" I ask. Attempting to control the situation to avoid the horrible and unexpected. But nope, I just have to use this tiny Christmas tree looking floss pic and make sure I keep the underside of my crown root clean. (Also, I'm eating chocolate as I type and I'm not a small bit regretting that.) Also- I have TWO cavities- in between two teeth and I have to go back to get them filled.

I left the office feeling like all of this was a 9-1-1. That's the thing about Generalized Anxiety- it can't usually categorize big from small with any regularity. But I brush my teeth! I floss. I can control that- so why can’t I control cavities? I asked the Universe, who then laughed at me for STILL not learning how to let go. We can't completely control our physical and mental health, but there are many aspects within them that we CAN CONTROL. THIS IS TOO CONFUSING.

Ugh. Maybe my next IEP goal will be to understand the difference between things I can and can't control. My baseline is pretty inconsistent, and boy would that knowledge take a load off.


So, Grey is back at school after a break of almost two years. Doing home school was always meant to be temporary. He needs and deserves peers and community and the group routine that only a school environment can provide. His time in his home program was so valuable. You guys- he can read (not decode, not yet) but can read HUNDREDS of words and do basic comprehension of the text he reads. He can use his device to say SO MUCH. SO SO MUCH. He can write things- with a pencil- in correct form!  These are things I KNEW he could and should learn but wasn’t in the school environment. I had the privilege to keep him home and come up with the skills I knew he needed, and then work with professionals to make it happen. (Don't ask me advice on how to Home school. I am lost without subject matter experts, and I seek out everything I don't know how to do- which is A LOT.)





Every year I make an "About Me" for the boys. It's hard to hand over a little piece of your soul, especially if they can't verbally express themselves like a General Ed student can. So I do my best to give staff- all staff, from the cafeteria to the nurse to the Speech Therapist- a little glimpse into my boys.


But what about everyone else who deserve to be presumed competent and given the supports they need to learn ? (A thought that keeps me up at night.)

Today marked the beginning of week three of school, and he's handled it like a CHAMP. Both boys are, but they are already ready for next Summer. Grey tells me, "Greyson all done school", eleventy hundred times a day, but he goes and he tries every darn day. I am proud of them.

I don't talk about specifics with regards to the boys and school. I have to respect the process, and respect the privacy of the many people who work hard (often with limited resources) and do the right thing. I will however continue to discuss the advocacy I do to change the system and the World.

"You can only advocate for your own child" many seasoned Special Education Parents of older children have told me. But that wasn't God's plan. I know that so much of what my boys need and are legally entitled to- everyone needs. I believe if you see something that isn't right- it is your job to speak up if you can. The outcome I can't control, but the speaking up- I most certainly can and will.

Baby steps my friend. The end of the million miles will be here before we know it.

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