(That’s my Happy Aspie in his Happy Aspie t-shirt. I have one of the shirts as well, but totally miscalculated the size I needed and now have a big gray t-shirt that could provide coverage should a hurricane strike and if post-hurricane FEMA runs out of tarps. It’s bigger than big. And I’m not some slip of a girl. I’ll be posting a link to these as soon as I have the link up and running.)
Anyway, Alex is HAPPY. Sorry for all of the caps, it’s not some weird acronym that means anything but happy, he is just that HAPPY! I want to shout it again: HAPPY!!! Ooops. I think I just woke him up. Shhhhhh.
I’ve delayed in telling all of you this, because I didn’t want to jinx it.
It has been almost 7 weeks that he has been happy, so I thought I could finally share as so many of you have offered shoulders, concern, kindness, and understanding over the years.
I reported, way back when, that his school was closing permanently. It closed at the end of the Spring semester, leaving us without a school in August, and without a camp in between. We had no other options, and didn’t feel safe and secure putting him in a program for neurotypical kids with new instructers/camp counselors and I was all hopeful that I’d have more energy after my new RA meds kicked in.
So kiddo spent the summer at home, with us. We just didn’t have any other options for him. So it was a summer of nearly no activities, spent inside (it’s Florida. It’s brutally hot here and we are pasty folk). I was fairly sick and in bed most of the time, trying to sleep and rest to get to my goal of doing one thing around the apartment, one thing with Alex, and one thing online everyday. That may sound like a minimal amount of stuff but I am seriously begging for more spoons once I run out before mid afternoon hits. The good news is that Enbrel has relieved a great deal of the pain from the RA, the bad news is all of my labs are screwed up and I’m still so fatigued that some days have me struggling to just pull enough covers back over to my side. Kid and his dad spent most of the time either playing video games or locking horns, or a brutal combination of the two. It was like no matter what, kid couldn’t get the benefit of the doubt or be understood and for some reason his dad’s understanding moved from accepting to denial. I’m not going to say it is ever easy. Kids with Asperger’s have Aspie/Autistic traits, but they are also still kids, and if they have been around typically developing/neurotypical peers, they may have picked up some habits, some attitudes that are less than desirable with the family. Mostly though, it made me realize that while I have presented every possible source of material to his dad, given the prescribed “space to parent in his own style”, and I needed to intervene multiple times per day. I started off exhausted and stressed and apparently my capacity for both was going to be stretched to the max. There is a precarious balance, between being wife and being Mama and trying to get communication flowing freely and appropriately. I have yet to find that balance, especially when I’m acting as sort of a berlitz go-between trying to translate Aspie into NT English and NT English into Aspie for two people who just could not get their messages across to each other, without hollering, crying, and stomping. We survived. I’m not sure we solved anything, but things have calmed since kiddo is at school, his dad is being much more mindful, and my boy is hap-hap-happy.
What was that? He is HAPPY.
We did something we swore we would never do while living in Florida (for many reasons). We had him re-evaluated by the school district and we followed their recommendations.
They assigned him a school and a classroom. He started school a couple of weeks late (long story). We went in the first day to see his classroom and meet his teacher. They had computers, hermit crabs, a lego table, a smartboard, and a trampoline in the classroom! He’s with 6 other kids, mostly boys, all with communication disorders. I showed his teacher the inflatable wobble cushion we brought with us (really helpful for Alex at his old school) and started to explain and his teacher said “Oh good! Here’s his desk. You can put that right here.” I didn’t even have to explain about how he needs to wiggle around in his seat to help him focus (yes, it is in his IEP, as well as other tools). The teacher knew this about my kid, about kids like him. They have a mini-trampoline in the classroom! He can jump on the trampoline to help with transitioning (which is what he does at home). It was all amazing and felt like a whirlwind of fresh, cool, clean air swirling around us in those few minutes we spent in the classroom.
We went home. We stopped at starbucks on the way back and it was strange. I don’t think we had been anywhere, sans kiddo, except for trips to the lab for blood draws every 4-6 weeks for me. It was such an odd feeling. We picked him up at the end of the day and he got in the car looking like he was about to burst into tears. As we drove away from the school I asked him “how was your day at school?” and he just bubbled over with glee. He was trying not to cry when he got in the car because he was so happy and grateful that it was threatening to come bubbling out of his eyes, so he hid his feelings as well as he could and then BOOM! It was like fireworks of joy and enthusiasm. I felt like I could start thinking about compiling a list of of pros and cons so I can decide if it’s safe to breathe again maybe. And then I will. But it has been seven weeks. Seven weeks and he has only reported a couple of issues, all related to the other kids in his class. They all have communication disorders and are on the spectrum. Naturally, they all drive each other a little bananas. So we are working on strategies to deal with this, but for the most part, the daily notes from his teacher have been positive.
I know! It’s so amazing fantastic wonderful that between this and allergies making my face feel like it’s been whacked by a frying pan, it’s surreal and almost trippy feeling. Am I hallucinating? Was I dreaming? I wonder this every single day, and everyday my kid runs into my room, jumps right on my bed, hugs my head so tight (he seriously wraps his arms around my head to hug me when I’m sleeping or in bed resting) and tells me he had another great day.
I’ve stopped pinching myself (the Enbrel makes me bruise and bleed very easily).
Anyway, just wanted to share. Are you happily squeaking and hopping up and down like me? (again, that could be the Enbrel. It’s made from hamsters. Really.)
Goodnight, my friends.
And Thank You.
The Tuesday Ten & Let’s Pretend (that I live in PST and not EST, so it’s not really Wednesday yet, ok?)5 Oct
It’s official. I’m declaring it here, so it’s not just rattling around in my head…
Every Tuesday I am going to share 10 things/finds/random facts/ideas.
This will be the first official Tuesday Ten…
1. Board of Education- very cool project on kickstarter that I really want to get funding so awareness can be raised about corporal punishment in the public school system. Like the documentary filmmaker for this project, I was shocked when we moved from the Boston area (I was raised in the burbs of NYC) to Florida and discovered that corporal punishment is alive and well.
Any amount will help get this project made. Personally, I can’t wait for my nifty bumpersticker. I’m going to rock that message all around our little bible belt town! Here’s the link for the project on quickstarter: Board of Education
2. Elephant Girl: A Human Story by my friend, amazing person, and enchanting storyteller, Jane Devin. This is her story, but parts of it feel like my story, and lots of reviewers have commented that it feels like their story. Her voice is one of resilience and honesty, and that strength shines through some of the darkest moments. Lots of folks seem to jump all over people who tell the truth about their journey because hardships, abuse, poverty, pain still seem to fall under that weird rug that’s been hanging around in many families for decades. This isn’t a “whoa is me” story, it’s not about miracles or bitter derision of those who abuse other people, it’s a journey through the abraded rawness of Jane’s life and finding out who you are when you’ve never been allowed to be yourself before. Great writing. Check it out (it’s in paperback and on kindle…. Linkeydoo below puts a wee bit of money in the Alex & Mama Adventures piggy bank.) Elephant Girl on Amazon.com
You can also check out some of her articles and blog entries over at JaneDevin.com
3. Herb & Dorothy are back! I love the documentary Herb & Dorothy. La la la la love it. Well, the director of the first film is raising funds to make a follow up that follows Herb & Dorothy’s next adventure in paring down their collection by donating 50 pieces to museums in 50 states (for a total of 2500 pieces!). I can’t get enough of these two… Amazing story about how you don’t have to be rich to collect and appreciate art. Anyway, here’s the link for the original documentary. Herb & Dorothy
(available via streaming, for free, if you have the Amazon Prime thingy)
And here’s the Kickstarter link: Herb & Dorothy 50×50
4. Tank. I cannot resist sharing this one…. The look on the dog’s face is just priceless. I watched this a few times today and I’m still laughing. We need a doggo in our family. We really do. That won’t happen for a long time as first we have to dig ourselves out of the hole we have been sinking in since the baldone lost his job. Once that happens, then we’ll have a puppy/dog/pet again. For now, I will keep trolling petfinder.com and sharing these endearing clips…
5. Three Words…. I don’t know if this just flew over my head or under my radar, but I think the Three Words idea is pretty cool. It lets people describe you with three words, it can be anonymous, and yes, you can delete anything you feel is offensive (from my understanding)… So, aside from the obvious “verbose”, what three words would you use to describe me? ThreeWords. Do you have a ThreeWords thing set up? Have you tried it? Please put your link in the comments and I’ll check it out!
6. Granola. I made granola this week to help snuggle the earth a little bit more by reducing the packaged goods we use on a regular basis. Barbara’s Bakery Oats and Honey Granola Bars are one of the few prepared, and relatively easy to come by, packaged/quick foods that Alex and I can eat and we love them. We recently discovered that crunching them up while they are still in the wrapper turns the two planks of crunchy granola sweetness into a nice bowl of breakfast cereal. This means that it was taking 12 boxes of Barbara’s granola bars (Amazon subscribe and save is huge for us…) to keep us in toasted oats. I perused the webbynet and found a few recipes, they are all along the lines of “take oats, add liquid sweetener, add a little water, add oil of some sort, squish, squeeze, toss, mix and bake for the totally inadequate time of 25 minutes at 275F”… So, I adjusted… Played a little, added a pile of ground flax and a couple of handfuls of coconut flour to up the happy fats, fiber, and protein, and came up with what I thought was a pretty darn tasty alternative to all of those planks. Alex does not like it. We tried a new version and used maple syrup instead of orange blossom honey, which has a flavor I love but I think is a little too overtly floral for him. Still, no dice. But we did have some good messy fun squishing the ingredients together, and as it turns out, he likes the mixture raw. I did order another case of the Barbara’s Granola Bars so we can keep adding them to his lunch box.
AND as it turns out, Alex’s other favorite food has been recalled! Yikes! Various Velveeta shells n’ cheeses. One of the very few things he will eat. Thankfully, the recall is only on select lot numbers… Check it out: RECALL
7. I think anyone on the conservative side of things needs to play this game: SPENT
Even as a person who has lived some of the scenarios in the game, it was still interesting to play it and realize how financially mucked up things are right now for so many families, mine included.
8. Manuel Rodriguez, the artist. I’ve been familiar with Manuel Rodriguez’s etchings since I was a little kid in the late 70’s, standing on the couch in the den of our new home, and learning about human anatomy through some of the naked folks depicted. Two of the etchings found their way into my possession and I’ve been going on insomniac google sprees trying to find out more information to insure or sell or keep the original etchings. I found this article recently, and now I think I will hold onto them (though finances are dictating that these too must go, so if interested just drop me a line). Pretty cool story about a 99 year old artist who revolutionized art in the Philippines, and taught a little kid that either in a framed etching, or in the flesh, nakey people are at the very least, at the same level without the constraints of jewels and clothing and labels…. Here’s the article
Most of my understanding of anatomy, during my childhood, was thanks to the etchings, some movies I probably shouldn’t have seen before my late teen years, and long walks at Robert Moses State Park with my parents, through the nakey beach. Apparently I was overjoyed about it then, and would drop my suit the second I spotted another naked person. This probably contributed to many of the horrible sunburns I had from head to toe nearly every weekend as a kid.
I also learned how to give the finger from his guy (super close up of one of the etchings):
This also explains why when I gave the finger as a child/teenager, I did it wrong. Maybe this guy is just point up and thankfully using his hands. I don’t know. I do know that my interpretation of things and my desire to adapt as a kid were not so compatible with the other kids.
9. Personal Grooming Mishaps! There is a contest and a pile of funny stories! I do think the prize should be some epic vajazzling instead of an open ended (ha!) gift certificate, but that’s just me and I’m both horrified and intrigued by the concept of vajazzling, kind of in the same way people cause rubbernecking when driving by car accidents.
I do wonder if the person who came up with the whole vajazzling thing was inspired by that joke about the woman going to the obgyn and using a glittery washcloth to tidy up… Anyway… Next…
10. I’m going to have to come up with a different listing plan. This only counts for day 4 of NaBloWriMo if I close my eyes and pretend really really hard that the time zones have changed and I’m now in Pacific Standard. Gah! I tried!
This critter is the Patron Saint of Cheering Me The F$#k Up. It’s up there with French Bulldog Puppy Rolling Over* in my Evernote Notebook of Things That Make Me Say Yay (Volume 2. Volume 1’s “Yay” is a sarcastic yay.)
Bill Nye, Guinea Pig:
Are you smiling? I’m smiling. That face (and I am not a rodent person, not since living in the South End/Roxbury a long time ago)… It’s like he’s truly horrified by whatever you just said or maybe he can read your mind and still, totally horrified.
Really. Tell him anything and he is clearly taken aback. He’s not quite a disapproving rabbit but Bill Nye has a little of that je ne sais quoi that makes me smile and lifts ye olde doldrums (ye oldedrums?). He’s more horrified than just being disapproving. He’s not judging. He’s trying to remember where he parked and if you know his home address.
Alex said that he looks like he’s trying to blame some smelly rodent bodily functions on someone else. Then again, everything is about malodorous bodily functions and underpants and butts (and all three combined are known as Thunderpants. Yeah. Alex just bowed his head and said “oh no” when I offered up that gem. Sheesh 8 year olds!)….
So try it. Confess something embarrassing…(don’t worry, I can’t hear you unless you speak through your fingers in the comments section)
I’ll give you a moment. OK.
Wow. Someone was naughty!
Anyway, enjoy your last few hours of the weekend (those of you observing weekends).
More tomorrow, when mah heart heads back to school and my brain resumes pulsing with wildly intelligent thought.
p.s. I understand that Bill Nye is still up for adoption… Please please please someone adopt this critter! If you click his photo it should take you to his PetFinder.com listing.
*French Bulldog Puppy Rolling Over:
I wonder how Bill Nye feels about all the silly stuff on YouTube.com….
Ok, it wasn’t really in outer space. It is October once again and time for National Blog Writing Month!
Once again, the fantabulous Heather, of I’m Not Hannah fame, is at the helm of our NaBloWriMo ship (actually feels more like a wonderfully eclectic parade with lots of rollerskates and glitter and streamers and quirkiness. Lots of quirkiness!)
I will be attempting to write a post every single day. You may have noticed that my posts have been few and far between for the past year (or 3). Let’s just say that I’m glad that NaBloWriMo is National Blog Writing Month and not an abbreviation indicating some death defying feat involving leaping over a large crevasse on my trusty Bat Cycle (pictured above. Those are real pretend special effects flames coming out the back. Toys were so badass in the Seventies!). I’m happy because I’m not a pile of busted bones at the bottom of the ravine, and after not meeting my “daily writing” goal last year, I do get to attempt this again without months of grueling rehab and days on hold with the insurance company.
NO. No. NO! I am not attempting. I am doing. Right now. And again. Tomorrow. And the day after that.
What do you mean you don’t believe me? I am doing this People. This Pandora has been storing it up for some time and my dented, faded, trusty old banker’s box (patched with a lovely selection of vintage travel badges and sushi grass stickers and silver stripes of duct tape, of course) is bursting at the seams!
Time for snuggles and then sleep. See you tomorrow!