I always try to keep my posts upbeat. I don't like to talk about the difficult things, like the meltdowns, the screaming, and the crying. They're hard to deal with, hard to write about and hard to read. But I guess I wouldn't be a good teacher if I didn't educate about the bad as well the good.
This evening served as a painful reminder of the realities of autism. We decided to take the kiddos out for ice cream as a treat. Everyone went to the bathroom before we left, then we buckled into the car and were on our way. We had to circle around a couple of times for a parking space, but we finally found one and made our way over to the ice cream shop. No sooner did we enter, then Jordan announced that she really had to go to the bathroom and it couldn't wait. So it was off to the public restroom.
And into disaster.
She went to the bathroom no problem. But when she was done, she absolutely,positively refused to clean herself. I tried to get her to go back in, but she clamped her hands on the sides of the stall, threw the brakes on and started shrieking like I was sending her to her death. She threw her entire 70 lbs into me and knock me into the wall. Fed up, I told her that when we got home, she was going straight to bed with no turn on the Wii. Usually that will cue her to stop, because she doesn't want to lose her turn playing Mario. Needless to say that wasn't the case tonight. Still weepy, we walked back to the ice cream parlor, where she continued to carry on until we sat down outside. That's when she started shrieking all over again. We sat for all of 2 minutes before we had to get up and leave because the meltdown was in full swing. She screamed, yelled, cried, and kicked the entire ride home, with Daddy Ceda trying desperately to keep Johnny from antagonizing her and me white knuckling it on the steering wheel. She was sent straight to bed, where she screamed for another 20 minutes before finally giving up. It was an absolutely excruciating two hours.
It's in these instances that I really hate autism. I hate that it sends my kiddos spiraling out of control because they don't understand how to control their emotions. I hate that it causes them to get overwhelmed by the simplest situations. And sometimes, I hate that I have to think twice about where we plan to take them because the surroundings might be too much for them to handle.
I don't want to change my kiddos. I love them just the way they are. But I am also human, and it is okay for me to have dark moments where I really just want to kick a puppy because the whole situation pisses me off and there's nothing I can do about it.
Today's Lesson: It's not always pretty, and it's not always going to be easy. But remember: you're still human, and it's perfectly normal to get angry when things are beyond your control.
Peace and Love
Thursday, July 14, 2016
Party in my house this week! Praise the powers that be, extended school year started on Tuesday! The regular school year ended on June 20th, and the following 3 weeks were, to put it nicely, like walking barefoot on Legos. They were very painful, at times unbearable, and often reduced us to tears.
Not EVERY day was like that. There were quite a few peaceful moments when we could sit back and enjoy being home with the kids.We tried our best to keep order and were very fortunate to keep some semblance of a schedule by sending them to their Uncle Pat's house a couple of days while I worked. But if they didn't know exactly what was going to happen when they got home each day, more often than not their behaviors would emerge and the evening would spiral out of control. The lack of routine, the absence of getting up in the morning, eating breakfast, getting ready for and then leaving for school took a great toll on all of us Daddy Ceda and I were frequently frustrated, exhausted and irritable by bed time. Squabbling and meltdowns were frequent, especially toward the end of the three weeks. Due to the lack of the demands of the school schedule, their world had become unstable. This is why routine is so very important in an autism home. Routine keeps us from falling apart. Routine keeps us calm and makes us feel safe and secure. We know what each day brings, so we can anticipate what we have to do to make it through. As I just explained, our world becomes a slippery slope without it.
Let's clear something up about extended school year. It is not free childcare, nor is it a day camp. The kids are on IEP's and are maintaining skills they've learned over the past academic year. The teachers and therapists develop a schedule for these kids to follow that include their services (speech, OT and PT) as well as basic skills such as math and language arts. They aren't running around doing arts and crafts and singing kumbaya around a campfire while toasting s'mores. Fun is incorporated into the day, but they are there to keep learning and stay on course. The last thing you want is to see your kiddo regress and lose valuable skills that sometimes cannot be relearned.
ESY doesn't work for all spectrum kids. But for us it is a blessing. It keeps our kids right on track with their learning, deters regression, and most importantly brings back the routine! I'm not anticipating fantastic reports home every day. That would be unrealistic. However, over the last two days both kiddos have gotten glowing home reports, so you know what? I'll take it. It means they are happy and they are back in their element of get up, eat breakfast, get ready and go to school. When they get home they are calm, collected and content. The evenings have been laid back and peaceful, and we really couldn't ask for much more.
Peace and Love