Acceptance
Finally a post that's not all about me feeling sorry for myself. In fact, I plan to gloat a bit, LOL.
My family has always tried to be supportive of our struggles with Reed. They are sympathetic, but I don't think they really "got it" if you know what I mean (and I'm betting you do). Because grandparents often see a different side of our kids, they often have a false impression of what parenting these kids entails. Reed has always been good as gold at Papa and Nana's. They never have any problems with him when he comes to visit. Because of this, Nana is always ready to offer me lots of parenting advice. Things like "You just have to be consistent." and "Make him responsible for cleaning up after himself and he won't want to make such a mess anymore." Um, yeah. 'Cause I obviously never thought of trying
that.
After today, however, I think she finally
gets it.
As I mentioned a few posts ago, Reed loves my grandparents and was disappointed when his spring break visit was canceled. So, now that Papa is feeling better, Reed was invited to spend the weekend. After a difficult evening with him on Thursday, in which I threatened to not let him go at all if he couldn't get himself under control, he finally settled down and went to sleep. He had a great day at school on Friday, and I was optimistic that the worst of this week was behind us. I dropped him off after OT, with dire warnings of what would happen if I got any unsatisfactory reports. We ran through our daily script of "How are you going to behave?" "Good." "How good?" "The best kid ever." We run through this script every morning before school, and it seemed appropriate under the circumstances. Owen and I headed home for a peaceful night. And there was much rejoicing. I got a call a few hours later that I had somehow forgotten to pack his pajamas. Reed had begged her to take him home to get them, but she convinced him to wear some sweats. She further appeased him by calling me and asking that I drop some pj's off the next day. I assured him I would bring them over the following day, and he was happy. Crisis averted. Problem solved. He went to bed without a problem. In fact, he was pretty good most of the day, only having a brief problem when asked to clean up his toys just before I dropped by with the pajamas. I had a talk with him, and reminded him that if he couldn't listen to Papa and Nana, he would be coming home. He promised me he would be on his best behavior, and I left, not wanting to infringe on his special weekend any more than necessary. Then at dinnertime, I got another call from Nana. She sounded like she might burst into tears at any moment. She informed me that she would be bringing him home as soon as she gathered up his things. I apologized profusely for his behavior, but tried to point out that this is just how he gets some days, and there's not much you can do about it. 45 minutes later, he came bounding into the house. Turns out that she had asked him to help clean up some toys so he could get a bath in before bedtime. He refused, and when she insisted, he started throwing things and screaming. He threw a shoe, which knocked a painting off the wall. While she was retrieving the painting, he ran into the kitchen, and swiped everything off the table. By some miracle, her favorite crystal vase didn't break, but it could have been bad. That was the final straw. She told him that he would have to go home, and he laughed in her face and refused to put on his shoes. That's when she called me.
I know it's really petty of me, but part of me is laughing inside. For all her advise, for all her opinions that there was something I wasn't doing right, she got to see one of his nuclear-grade meltdowns first-hand. I feel some subliminal "I told you so"s are in order.
On being official
Grr, Blogger ate my post. I had a lovely though-provoking post all typed up and it has disappeared. I'm not sure I'll be as elloquent the second time around, but here goes:
Reed had his appointment with the ASD neurology specialist this week, and he confirmed the school's findings. We are now the proud(ish) parents of an Asperger's child. This comes as no surprise, and I'm actually glad to have it over with. The neurologist declared that we were on top of things, and couldn't suggest anything that we weren't already doing. That felt nice. We will get an MRI done over the summer, but will wait until school is out before scheduling that. He also refered us to a research study on AS being done by the local university he's affiliated with. I am still torn as to wether to sign Reed up for it or not. While the $3,000 or so in free testing is extremely tempting, it would require taking him off all meds for 3 weeks prior in order to be elligible. 3 weeks is a long time, and I'm just not sure we're ready for that yet. I know medicating kids on the spectrum (or any kids for that matter) is contriversial, but it is what works for us right now. He functions so muchs better on his meds. He asks for his pill if I forget to offer it with breakfast. I asked him once why he wanted it when he reminded me. He answered simply, "It makes me not so much." So there you have it. He is too much even for himself. When he can't focus properly, he can't put a filter on the world, and it overwhelms him. I'm not convinced it's fair to anybody to deny him that. The answers the additional testing might provide, and the benefit to autism research are so hard to walk away from, though. At least I have some time to decide. We wouldn't do anything until school is out anyway, so I'm thinking and praying on it hard.
I'm open to suggestions and advice. What would you do? You, my wonderful friends in cyberspace, are so much wiser than I in matters like this. Should we give it a try without the meds? After all, we might discover he can do just fine without them once he gets used it it. Or should we alow him his comfort zone for now?
Thank you, my friends inside the Internet!
Your comments on my last few posts have made me feel so much better. It generally feels like I'm talking to myself, so a little feedback was just what I needed this week. I just wanted you all to know how much I appreciate your support.
Great Big Cyber Hugs for Everyone!!!!
Transitioning
This past week has been hard on Reed, and I'm a little afraid of what that will mean for our summer. Disregulation has become a way of life for my little man, stemming from many sources. First, it's Spring Break. There is no Kindergarten. Despite my best efforts to follow his classroom schedule, it's just not the same. Next on the list of culprits is the rescheduling of his visit to my grandparents. My grandparents love having him over, and were so excited to spend a few days of his spring break with him. Then, early Easter morning, my grandfather went into the hospital (he's recently had surgery and developed a blood clot in his leg). No Papa= No Reed visit. He took it well, but I know he was disappointed, and it is contributing to his unrest this week. Then, we got a new roof. It was loud, it was unfamiliar, and he couldn't even go out into the yard on some of the nicest days we've had this year. That was the final straw. He disintegrated, and hasn't been the same since. Meltdown after meltdown have disrupted my day, the most recent of which involved kicking his little brother in the head because Owen was climbing onto his bed without removing his sandals first.
The solution to all this chaos would be to leave the house, but with gas prices as high as they are now, I can't afford to drive anywhere if it's not absolutely necessary. We were going to take a walk, but since Reed insisted on the longest possible lunch today, there wasn't time before Owen's nap.
I know I seem to complain a lot, but please don't get me wrong. I'm merely frustrated because I am so new to this autism-parenting. I don't know how to help him cope with his noisy, unpredictable life. I feel woefully unqualified to be the mom to this amazing little kid. I'm just looking for a little validation that even if he has a kicking, screaming, thrashing fit every day this week, that we're still making progress. He has moved into the "I hate this" phase, which while somewhat infuriating, really feels great (as long as it's not me he hates). He is learning to verbalize his frustrations. The chair is in his way? I'll take "I hate this chair!" over throwing the chair through a window any day.
Denial, exit stage left
You know, I've secretly been in denial about this whole autism thing all along. Go figure. I was in denial about being in denial. I thought I was okay with the autism diagnosis, and I guess I still am. What I
was in denial about was what that will mean for Reed. I thought, "He'll be fine, he's a brilliant kid. He has a few behavior problems, but nothing he can't manage.
"
I had a reality check this afternoon. I got to go into OT with Reed this week (I can watch anytime I like, but can't bring Owen along, which means that I don't get to go in often). I suddenly saw very clearly that he is
Autistic. With a capitol
A. He is so uncoordinated. Poor kid got beaned in the face with the basketball more times than he caught it. He couldn't make a basket in the kid's hoop just 18 inches from his face. He tripped 3 times just going down the hall to the therapy office.
We're also starting to see more and more ASD-related behaviors. I've started to find lines of toys everywhere I look. 2 weeks ago, there was a head-banging incident at school. He got over-stimulated in gym class and started beating his head against the cinderblock wall of the gymnasium.
But it's not all bad. He's making great progress, and continues to amaze teachers and doctors. I'm finding my place among the autism community, and my denial is fading. Act 2 anyone?
Autism Awareness Month
April is Autism Awareness Month. I don't know about you, but I'm already PLENTY aware of Autism. So I'm moving on. For me, it's Autism Appreciation Month. I'm appreciating my Autistic child, how 'bout you?
