The grief that comes with autism is multifaceted. I just spent an hour and a half in between anger and sadness and frustration and loss. The rascals are seven now and at times I'm amazed that pieces of this journey get better; they get easier. And then I'm amazed they they are just as hard and as gut wrenching as they were when they were infants and life was totally unpredictable.
I spoke with their AI teacher today and found out that she "barely sees them all day". She reported she sees them for maybe 45 minutes in the morning and maybe 30-45 minutes in the afternoon. I was shocked! Especially since their IEP states something very different, ohhhh, like they are supposed to be in the AI classroom 75% of the time! They go to the gen ed class, next door, pretty much all day. The last time I had a conversation about them spending more time over there was last spring.
I was diagnosed with a brain tumor in November 2011. I have named it 'Lil Bastard. I laugh every time I write that no matter the mood I'm in which is a good thing. On one of the tumor boards I frequent, I decided to bring some levity to it one evening, which it desperately needed. I mean, c'mon, it's a tumor board, it's not exactly Comedy Central. So I jokingly said I was tired of having the damn thing in my head so I was ready to take it out myself. And I asked who was willing to join me? Well, it inspired a hilarious thread invoking the spirit of creative uses for whiskey, pliers and all of our made up names for our tumors. It may sound dark to those of you who aren't "in the know" - lol - but trust me, it made my night.
Humor is found is places where sadness and grief is created if you allow it. In the midst of a double diagnosis in our twins, humor is rampant in our household. You always hear that people on the spectrum "don't get humor" which is a load! My youngest twin, Rascal #2 not only "gets" humor, he is phenomenal with humor.
Rascal 2: Dad, can I have some juice?
Dad: Sure, I'll get you some.
Rascal 2: Well then step on it old man!
We are incredibly sarcastic which is really hard to grasp in general for a neurotypical person and most of the time he knows how to deliver it but he does it with apology usually. He's so sensitive to hurting people's feelings. He's such a love. And he's only 7 which is totally developmentally appropriate! Yay!
Grief. I'm feeling it sharply tonite. I called for an emergency IEP meeting for the boys. Because of the tumor I have been taking on every nuance of change that I have seen in them since I've gotten sick. Which makes perfect sense in my book. They have been complaining about school, going from loving school to saying they hate going to school. My red flags went up but they weren't able to communicate anything clearly or specific as to 'why'. Now I may know a potential reason or at least a contributing factor. There is nothing worse than trusting people with your kids --- who have problems communicating (and trust me when I say how grateful I am that my kids CAN communicate what they can) -- and these trusted people do not tell you important pieces of information. And they break rules/laws in the process. These are not bad people. I know them. They adore the boys. The care for them. They are good people. But at the end of the day, they are not raising my boys. Their dad and I are raising the boys.
It's a dance. Allying and asserting and advocating. I shot off quite an email to the teachers. It wasn't for show or to ruffle feathers. I was simply asserting how upset I was over this. None of them have special needs kids and you can work with them allllllll day long. You still give them back to someone else at 2:55pm Monday - Friday and they do not call you Mama. It doesn't minimize your importance but let's keep it in perspective.
Enough for tonite.