This weekend we met up with my sister’s family to celebrate her birthday at a new Japanese hibachi restaurant nearby. Gus has had a sort of love/hate relationship with Japanese hibachis: when he was very young, they were no problem, at around 2 they traumatized him, and now he loves them again. It was a great time, especially since he spontaneously decided he wanted to try sushi! Fortunately for him, my nephew eats it and ordered some so Gus could try it.
He shoved a piece of raw white fish (it was either squid or halibut) in his mouth, and with a full maw exclaimed, “I wike it!” The salmon didn’t get as positive a reception. I was so impressed he actually ate it without spitting it out, that I didn’t bother to remind him not to talk with his mouth full. We had a great time and he must have eaten his body weight in food. MM tried some new things too: edamame (soy beans), soup, and fried rice. It was a win all around!
Which gives me a nice segue into the Lemonade Award I received from 2 bloggers: Caregiving Daughter and More Than a Number. So, I’d like to thank them for the recognition and will pass the honor on to a couple of bloggers who exhibit a positive attitude:
The approach of March in the colder parts of the U.S. can bring with it some wacky behavior in all of us because of a general ‘enough winter’ attitude coupled with a hint of spring fever. For individuals with special needs, who are often more sensitive than the average person to seasonal shifts, it can be a particularly trying time. Gus seems to be in dire need of strenuous physical activity, but it’s still too cold for him to want to spend much time outside.
So we went on a little adventure today. I found a stationary bike that is the perfect size for the house AND for everyone to be able to use, for a bargain on craigslist. We went to pick it up, taking a lovely scenic drive over a treacherous mountain pass. We won’t discuss my paranoia - I had several escape scenarios in case we happened to stumble upon a suburban Jason.) So now, Gus can get his large motor muscles all worked out (he’s loving all the sensory input) and he can play his Pokemon game at the same time. It’s a win-win situation all around.
Have you gotten any particularly sweet deals on equipment for your special needs child?
P.S. Sorry for the blurry photo - he was moving and I was trying to catch him in a relatively stable position. I didn’t do so well!
Parents of autistic kids will spend a great deal of time teaching their kids social skills for a variety of situations. For example, when we take the kids to a restaurant, there’s always some discussion of the restaurant rules: using inside voices, staying in our seats, using utensils…It’s a good bit of work, but we do this because we want our children to be able to function in a less-than-tolerant society.
Why then can we go to a restaurant and see a group - 2 adult women and 4 children under the age of 10 - where the children wandering around the restaurant for the majority of the time they were there? They weren’t being exactly obnoxious, it just seems like life has thrown us yet another double standard. They didn’t get any funny looks (that I noticed) for wandering around tables where people were eating…standing in chairs…climbing on the fireplace…
And yet my child is the one labeled with the “problems.”
“Does that seem right to you?” ~Jubal Early, Firefly.
Because we couldn’t possibly keep the kids cooped up for another weekend, we spent a couple of hours at the children’s museum today. Gus loves it and MM seems to be gaining an appreciation as well. Two of the favorite attractions today were a Revolutionary period exhibit and a DJ booth where Gus could play music while I pressed some buttons to turn on some funky disco lights. He looks good in a sound booth and he loves mics, so maybe…
I’ve been noticing for over a week now that he’s blinking excessively. He says his eyes don’t hurt, no headache, and he can see. It may be that he’s tired or that his eyes are straining. Or he could be developing a tic. He made a comment the other night just before bed that he was trying to open his eyes. That freaked me out quite a bit until I was convinced that he could in fact see me. The problem is that if his vision is getting wonky, he doesn’t have the expressive skills to articulate what’s going on. So he resorts to language that only makes sense to him. Still, I think I’ve watched and waited long enough. I’m taking him to the doctor and hopefully can get the name of a good opthamologist to take him to.
So that’s the update for this Sunday. Anything interesting with your weekend?
Our last ‘holiday’ activity was to take a trip into New York City to visit the Swedish Cottage Marionette Theater located near 79th Street and Central Park West (there’s an entrance across from the Museum of Natural History). You may question, “Why not visit the Museum?” For a kid like Gus who gets overwhelmed with sensory overload very easily and wants to be everywhere at once, the Museum is fun, but it’s also an endurance trial that greatly shortens the length of time that he can manage himself. The puppet theater, however, was just his speed.
We saw a production of Peter Pan. The show lasted 55 minutes, perfect for short attention spans (of a 5 year old and a 7 year old with ADHD symptoms in addition to his Asperger’s). It’s a very small theater, so even at its most crowded, there aren’t but so many kids. It wasn’t very noisy or busy, and even the little bit of chatter before the show started was annoying Gus who was trying to listen to the music playing. He coped. Once the show started, he was thoroughly engaged and sat through it, probably better than some adults who were (very rudely) up and down, in and out of the theater. At one point during a set change, there was music playing and a disco ball shone lights on the curtain, stage and ceiling. It was like when Gus was a kid and used to get mesmerized by the ceiling fan or the wind blowing through the leaves in the trees. Complete fascination. Even MM got a little zoned out watching the lights.
It was a very long car trip for us, but worth it in the end, despite the obscene parking cost and the subsequent back pain I’m dealing with today. We thought about taking the train and then subway, but I was worried about Gus getting overwhelmed and overly ‘bouncy’ in what would be for him a dangerous environment. In the car though, the kids had a packed lunch and chilled out listening to their favorite music. We got there early enough that they could spend some time at a playground near the theater to work out some of their energy before having to sit through the show. Before making the trek home, we stopped in the boroughs to visit with my sister and have a bite to eat. They slept on the ride home - easy peasy.
Many times it can be a challenge to find entertainment for children on the spectrum because of all the sensitivities to their environment. I’ve found that little excursions to things like community theater, the puppet theater, smaller kids museums, or outdoor activities have worked best for us. Both kids enjoy their time without getting sent over the edge. And that works for me.
Or a brand new year as it were! Happy New Year, readers! Today I am thankful for:
Getting home safely from our brief New Year’s Eve celebration at my cousin’s. We got hit with a snowstorm yesterday morning, and decided to go out anyway as soon as the snow stopped. The roads were kind of bad, but the kids were so excited about seeing her kids that we chanced it. Her son is a few weeks younger than Gus and has a similar diagnosis. They usually only interact in passing, but yet always seem excited to see each other. They did play together yesterday, so it seems that they may progress toward being friends one of these days.
I am thankful for a very patient and kind waitress this morning when we took the troops out for breakfast this morning. In my infinite wisdom this morning, it didn’t occur to me that we had waited too late to get moving. Gus has a much harder time with his coping skills when he’s tired or hungry. So he got upset that we had to go to our table before he was ready, and he was quite rude to the waitress. I wouldn’t say he had a full blown meltdown, but he was pretty loud and clearly distressed. The waitress never even flinched or frowned, just went on as if he were being the most docile child on the planet. Had I been less agitated myself, I would have thanked her especially. The world needs more people like her.
I am always thankful for the chance to start fresh and to try new things. We got some good news yesterday which was a good omen for things to come.
What are you thankful for at the start of this new year?
Happy Winter Solstice! In keeping with our family tradition, we got up early this morning and went outside to greet the sun. From now on the days will start to gradually lengthen - what’s not to celebrate? As we trekked through calf-deep snow (knee deep for poor MM) I realized what a sensory wonderland it was for Gus!
I’ve read that kids with ADHD and many on the autism spectrum do particularly well when they can spend some time out in nature. I’ve found this to be true for Gus (Asperger’s and borderline ADHD). I did some videotaping and tried to experience the moment from his perspective. I’m not expert at video-making yet, but here’s a brief glimpse of our trip to the lake this morning:
Trudging through the snow allowed Gus to use his large muscles providing proprioceptive sensory input and also strengthening the weaker core muscles.
Being bundled in several layers of warm clothing gave him some deep pressure (squeezing) which tends to be calming for him.
At one point, Gus lay down in the snow which also provided deep pressure with the added bonus of a snow angel thrown in with the deal.
Early morning, cold, snowy day - very quiet and heavenly for a child with noise sensitivity.
The rushing wind created a white noise that added to the soothing feel, especially when listening to it through a jacket hood.
On the way back, we decided to take the long scenic route, and I noticed that Gus was exuberant and loving the morning, but not in the manic way we typically see when he’s racing through the house. That was a gift in itself!
Speaking of gifts, the kids were allowed to open a couple of gifts last night and this morning. Celebrating both Solstice/Yule and Christmas helps to mitigate some of the craziness of Christmas day. They get less overwhelmed by too much ’stuff’ and can take the time to enjoy their presents a little at a time. He loved the mini Hot Wheels set and the new Leapster game; the MP3 player didn’t go over as well as I thought. Perhaps when he learns to use it, he’ll warm up a little to it.
So that was our morning. How does your special sensory needs child do with outdoor/nature time?
We took the kids to see a community theater production of Sleeping Beauty. I was nervous about going, especially after our fifteen minutes of Wall-E. Things turned out much better than expected.
The show was a musical, which was a BIG plus because Gus loves music. It was also the earlier of the two shows, so it wasn’t very crowded. Win! We got seats near the back right on the aisle (just in case we had to leave).
We had a discussion about the ‘play rules’ on the way over, and we made sure everyone had lunch so there wouldn’t be any hunger meltdowns. There was about a fifteen minute wait after we got to the auditorium, but he was excited and in a good enough mood that he handled himself well. The show itself was great, notably the role of the Prince. Once the lights went down Gus was mesmerized and wasn’t even disturbed by the fact that there was no intermission. He actually sat through the show better than MM, who started bouncing in her seat about halfway through the show. She was funny - at one point during a set change, she said, “Can we just get on with the show? Enough commercials already!”
We were worried that Gus would be yelling out comments, but he was amazingly good about keeping his voice down.
After the show, the actors hung out in the hall and signed autographs as their characters. MM got a few, but then Gus decided he wanted one too. He’d been reading the actors’ bios and decided on one. So we went up to ‘the Prince,’ a very kind fourteen year old, and Gus asked for an autograph. Then he proceeded to tell the boy his (the Prince’s) name, and what grade he was in. Prince was a little weirded out until I explained that Gus had just read his bio on the wall. I think he thought he had a seven year old stalker.
All in all, a great day out for the family. I’m sure that the advance prep work made all the difference. That and I think we were due for a little luck as well.
It’s been a roller coaster of a weekend for us, and I’m even more convinced that there’s some level of SAD going on with Gus. His mood swings are disconcerting and I’d be lying if I said they weren’t a little annoying as well. He’ll be going along just fine and then out of the blue gets very contrary, defiant, and difficult. He’s even been giving me a hard time about meals, and he’s always been an incredibly good eater.
We spent a very nice day with my sister-in-law and brother-in-law, which included a mountain hike. I thought the outdoor time would do Gus good, and I think it did for a while, but he was also intent on giving me a heart attack. He made a run toward a sharp drop-off on our way out of the park. I guess it was a bad idea to have a talk with him about staying away from the cliffs - it seemed to make him curious about what would happen. He had no fear about them, but before bed he had a meltdown because we’d all been joking about bears being in the park. He fears the imaginary danger and the real danger is totally lost. It can be impossible to know what to try to prepare him for and what not to say.
It was also interesting how much he slept yesterday - in the car going to the park, most of the way home, and straight through the night. I fully expected a 3 am wakeup.
He had a pretty good day today, even though we had to stay in because it was a rainy, snowy mess outside. He didn’t get grumpy until dinner because I made turkey pot pie, which he usually loves.
Hopefully, the comfort of his school routine will help settle his nerves at least for a couple of weeks, until our routine is shattered again with the holidays.
On a side note, NanoWrimo officially ends tonight, and I finished with an official word count of just over 52,ooo words. So, now that I’m not obsessively cranking out a novel, hopefully my posts will get a little more interesting again! Hope you had a great Thanksgiving weekend! Back to the grind tomorrow!
Tomorrow begins the Thanksgiving holiday weekend. While I love having my kids home, there is always the problem of how to entertain them all by my lonesome. That challenge is compacted right now because I’m working at home so there are deadlines, and more deadlines, and oh yeah look another deadline. I’ve got editing to do by Friday; 4000 words to write by Monday; and a novel to finish before Sunday. Then there’s that pesky holiday to get ready for on Thursday. How do I accomplish all that and still keep two kids busy? Clearly, I can’t, right? Or can I?
I have this crazy idea that I can still make a Herculean push these last 5 days and get everything done. I think I may have to give up a few extra hours of sleep this week, perhaps just not sleep the rest of the week. I plan to bribe the children with a movie if they give me a few hours to work tomorrow - High School Musical 3. Or maybe we’ll check out Wall-E at the second-run theater. And while I am fully aware that attempting to take the both of them to a movie on my own is probably a good indicator the beginnings of a nervous breakdown, I’m going to try it anyway.
Could it be that I’m sounding like the breakdown’s already begun? Not quite - close, but not quite. Just having a strange combination of manic energy and not wanting to do anything but listen to Twilight on audio - otherwise known as procrastination. See, so why should my kids be cooped up because I’m a chronic procrastinator?
I’m not sure how the loudness will sit with Gus, and MM may get bored halfway through. I fully expect that one will end up wanting to leave and the other will want to stay…or one will want to roam and the other will want to sit. It will likely be a disaster. But what’s one more disaster to the big dope who managed to get so overloaded with stuff to do? We’ll just call it an adventure and move on.
Plus, it will give me something to blog about tomorrow, providing we’re all still in one piece. My posting may be sparse for the next few days. There’s only so many words my brain can process in a day.
So, if I don’t post tomorrow or the day after, wishing you all a wonderful Thanksgiving and wish me luck that my brain survives the next few days!
Manic Monday prompt by Mo
