Friends – there have been a lot of tears shed on the red couch over the past week, and they’re not all mine. The roller coaster of emotions, challenges, obstacles overcome, big feelings and big deal decisions have been affecting everyone in our family. While our Siamese cats, Simon & Garfunkel, seem unphased by all the goings on, they do look at us in frustration when big deal conversations on the red couch stand in the way of their feeding times.
Ada G. had an orthodontist appointment last week that didn’t really go as planned. She’s been going to the same pediatric dental office since she was two, and has always been upbeat and easy going about it. True, she likes their giant fish tank more so than fluoride treatments, but we’ve never had an issue. At our last visit, we learned that Ada had her first cavity, and that due to some crowding, she would need to visit the orthodontist to avoid more cavities.
Because I occasionally think I know how to do this autism parenting thing (I don’t know why), I called the orthodontist office, chatted about how Ada has high functioning autism, but that for her, it would likely not really be noticeable except that she tends to be quite quiet and reserved in new situations. I assured them we’d be on hand to gently help her feel comfortable, and that it would be great if we could come during a relatively quiet time of day.
Considering my little speech, I’m guessing that the office staff must now think I’m more than a pinch delusional! While Ada is usually very shy and reserved in new situations, she took a very different approach during this appointment, and the 30 minute friendly consultation suddenly become a 2 ½ hour crazy pants, melt-down, no-you-can’t-look-in-my-mouth, disrespectful, angry 8-year old girl bad dream. Mostly, Tom & I were just in a state of shock! We’d never seen her behave like this. Finally, we apologized and went on our way, not really understanding what had happened.
While her behavior was very uncharacteristic, what made me most sad was how she must have been feeling inside her anxiety ridden little body, and it broke my heart. Not once did she express negative feelings or anxiety about the appointment, she never said anything about not wanting to go, and we had no indication that she felt out of the ordinary. Sure, without adequate coffee or if a brother is in a particularly rough spot, I may not pick up on some subtle signs, but based on her reaction, this was a big deal to her. That, or she’s just really angry about people asking her to write what she’s thankful for on a paper turkey that she promptly and ceremoniously ripped up and threw at a random patient.
I think we were event more stunned because Ada has been so “on” lately. Her transition of elementary schools has gone better than we ever could have hoped. She adores her teacher, is starting to connect with some new friends, and is hanging in there academically. We’re so proud of her – that she asked to attend her neighborhood school because she wanted to meet kids from our neighborhood, and advocated for the right to do so was amazing in and of itself. She knew what she wanted, and she was a woman on a mission. Even when it was scary and we knew it could have failed miserably, we honored her wishes, (ok, I had 2 anxiety filled meetings with the Principal complete with crying), but ultimately, it was just meant to be.
Lots of days, Ada’s challenges are not obvious, and sometimes I think I take that for granted. She certainly has her issues, but they are much more subdued than her brother. A few weeks into the school year, her case manager called asking to revise her IEP so that she would have no pull-out at all, and I was frankly stunned. Considering where she’s come from, this is crazy awesome in every way. We went to her school conference, and rather than an entourage of people, it was just her teacher, Tom & I. Sure, I still hear all the 2nd grade scuttlebutt about who said a bad word (stupid), or who is having too many unexpected behaviors, but I’m also hearing about who likes to swing, who asked her to hang out at lunch, and who likes Goldy Gopher. It’s kind of amazing in the best of ways, and our pride for all her hard work in making this possible is overflowing.
A week has passed and I don’t know that we are any closer to determining what happened that day at the orthodontist. When we ask her about it, she either says “topic change” or suggests that she would like us to bring an iPad next time. I have a hard time believing this experience was due to lack of an Apple product, but frankly, I’m not sure I’ll ever really know the answer. I do know that the odds are even in our favor, and that while autism can bring some unwelcome surprises from time to time, her accomplishments are far more remarkable than her challenges. Frankly, I really like the person she’s evolving into, and genuinely dig her just as she is. Ok, I wish we didn’t need to chat consistently about the need to consider underwear color when wearing pink pants, but I have faith we can connect those dots soon enough.
H man has not been immune to drama either – which is fairly unusual as he is typically a fly under the radar kind of guy. Here’s the deal – Henry is introverted among introverts, and his comfort zone has some snug boundaries. While he’s come a long way since middle school started, and has had to do some ridiculously crazy things like talk to teachers after class or, as he likes to put it “talk about drugs and friendship” – hopefully not in that order, it is still a work in progress as he works though finding himself in the maze of middle school. That said, when we received an email about the 6th grade party after school last Friday, we told Henry we wanted him to go. Surprisingly, this didn’t go over well, and we had to work through an emotional evening discussing why Tom & I were so mean that we would make him attend a party where he likely wouldn’t know anyone and he’d have a miserable time.
I couldn’t argue that – Tom & I were horribly mean in this case, and yes, we did buy a wristband so he could eat pizza and popcorn, play games and jump on a giant inflatable with his friends. Finally, we asked him to do a little perspective taking – if this was the most horrible thing that happened to him all school year, we felt he could deal with our miserable parenting decision. Shockingly, when he arrived home from the party, he was smiling, all the “guys” had been in attendance, and he ended up having a great time.
Speaking of middle school, we’ve been struggling with how to help E man for some time. Long story short – things are not working, his anxiety is tremendously elevated, and he has been telling us for some time (in actions rather than words) that something needs to change.
Maybe some of you have the experience of cringing whenever you hear the letters IEP spoken in that order? Even more crazy, having gone through the process in May, why on earth would anyone do it again before the 12 month deadline?
While we’ve been working with his educational team, doing tours, collecting information from specialists, doctors, and beyond, unlike most situations where my Mom gut just knows intuitively what to do, I’ve really felt lost, and poor Tom could frankly not even fit on the red couch with the rest of us in such a rough place.
We didn’t even know this morning when we arrived for the 7:20 a.m. meeting what the best course of action was, but for once, the energy in that conference room was centered on Elliott’s strengths, and not just his challenges, some of which are significant – just like an IEP should be in my fantasy world. E man has many fans in his life, and several of his teachers chose to attend – even though they didn’t have to just because they care and want what’s best for him.
When the Tech. Ed. teacher spoke about how successful E is in his extreme pinball class, and said he’d be happy to have E in more than 1 class, I can’t say I didn’t tear up. When Ms. S. (E’s amazing tutor who works at the school but doesn’t have E on her case load) happily agreed to come and share her perspective about his many capabilities, it was a wonderful reminder that E has an arsenal of tremendously talented, compassionate people in his corner that want the best for him. It’s kind of empowering and invigorating to know his village is really pulling for him.
It was less successful when we shared with E that he’d be spending part of his day at a different school for Trimester 2, and my heart ached when he was so sad and overwhelmed, likely feeling as if he’s failed at something he wants so desperately to succeed at. We tried to spin it as a positive, but he’s savvy – he knows what’s working and what’s not, even though he can’t necessarily make the changes he’d like to.
I left even though he was distraught, knowing that I was not able to give him any answers that would soothe him at that point. A short time later, he called me to say he was not going to follow the new plan, and would instead be homeschooling, and would serve as his own teacher, and then promptly hung up. The ever patient Ms. K. has since emailed to let me know he’s in a much better place, and instead of saying he won’t do it, he’s now just asking a lot of questions.
In so many ways, I get it. Change can be really, really hard, and I don’t know for certain that we’re doing the right thing, even with the best of intentions and a lot of love and reflection. But I believe in him, and I believe that sometimes stepping off the paved path can be a really positive thing – even when it’s muddy and messy. Just ask Henry . . .