Tag Archive | autism

What I’m Thankful For….

thankfulThis Thanksgiving someone tried to get folks to go around the table and say what they were thankful for. It fell rather flat. Someone said “my good looks,” another person said, “my health,” and then it simply morphed into an eating frenzy that left everyone in a deliciously happy food coma.

I have been thinking about this. If you say you’re thankful for personal things, some think you’re being selfish, but if you say you’re thankful for the typical things, you’re copping out. So I decided to say what I’m thankful for, by category, because I really am thankful for so many things. Life is tough, but when you break it down, it’s a wonderful thing.

#1) “I’m thankful I’m 46.” So many times I’ve been frustrated about aging. But then I read a quote that changed my thinking. It said, “Don’t fret about aging… it’s a gift denied to many.” How true. I’m alive and healthy and on this earth, so I am thankful I’ve been given the gift of time.

#2) “I’m thankful my family is healthy.” It’s true. Is life hard at times? Sure. But I’m thankful my son, who has Asperger’s, is as high functioning as he is. I’m thankful he tells me he loves me and hugs me and is back in the middle school with his twin sister. I’m thankful my daughter is a great athlete. She loves it and her passion is something that is wonderful to see. I’m thankful my husband is healthy and takes care of himself so he can be there for all of us.

#3) I’m thankful I got the guts to put my fiction novels out in market. So many times I believe we stunt our spiritual, emotional and professional growth because we’re scared of how we’ll be perceived by others. I’m thankful for the maturity I’ve finally developed that has allowed me to overlook my fears (or at least ignore them for the moment) to try this dream.

#4, #5, #6 and #7) I’m thankful for budding flowers in the spring, for Facebook, that my ferret is litterbox trained, and I’m thankful for lactaid pills so I can eat all the yummy foods out there.

So, when times are tough, make a list about what you’re thankful for. I think you’ll be surprised that there are so many things you can put down that you didn’t realize. And, hopefully, they’ll make you happy and fulfill you through tough times.

How about you? Give me one thing you’re thankful for – would love to hear it.

How I Turned into Supermom on Friday…

benandmeI have spent the past few weeks focussing this blog on writing, but by my subtitle, my blog is really about “Musings of a Type “A” Mom.” As much as I’d love to spend my life writing and cooking, a big part of my world is, of course, my children.

Here was my FB post Friday: DONE! Within 13 hours of deciding Ben was not going back to Camp Kehilla, I interviewed 5 camp directors, went to his old camp to settle things AND get my reimbursement, got medical forms, filled out paperwork, went to his new camp to meet the team, and now he is OFFICIALLY starting Luhi’s Computer program, with swimming, on Monday Morning. BooYa! I should really do this stuff for a living.

Let me explain. My 11 year old son has Asperger’s and camp (and most things) are not his thing. If he had his way, he’d be on the computer for his entire life playing Minecraft or watching crazy youtube videos that range from Team Fortress 2 vignettes to My Little Pony movies. For the past few years, he’s been going to a mainstream camp, but they suddenly closed. We looked at other mainstream camps, but they weren’t good fits (either too much sports, no real supervision, etc) so I selected a special needs camp where all the kids were on the spectrum. I was assured that his group would all be high functioning because my son gets very upset if he believes he’s in a group for kids with needs – especially if they’re lower functioning.

It’s been 3 weeks and needless to say, camp was a disaster. He was upset at the long bus ride, upset at some of the kids who would verbally stim for hours on end, upset that he was bored, not challenged and it was too chaotic. It got to a point that he was begging us not to take him to camp and he started having meltdowns to the point where he’d hurt himself. Camp simply shouldn’t be that way. I don’t blame the camp. We tried, it didn’t work out. My fault would have been to simply leave him there, because it was easy. But this mom doesn’t play that way.

I woke up at 6:00 am Friday morning, July 19th. Called in to work that I was taking off and started my emails. By 9:00 am I had started talking to directors at various camps, made appts at doctors to pick up medical forms for the camps, started downloading forms and started Facebooking about my plans. By noon I had it down to 3 camps. By 1:00 I chose one (one I had not even known about at noon and a FB friend mentioned!) and then dashed out to my son’s camp to let them know he wasn’t coming back, get reimbursement and take him home. (all nicely – I really don’t fault them).

By 4:30 I was at the new camp delivering payment, forms, getting the bus set up and talking to the Director. So, on Monday – only 3 days later on July 22nd, he’ll be starting a new camp, a computer based video gaming development program that “he thinks looks very cool” – there’s food he’ll eat, swimming and sports (hmmm), but they’re aware of his needs and the head of the camp believes he’ll be fine. My son has promised that he “will try” to control his behaviors. I’m hoping he’s motivated because he really wants to be there.

So, now I’m trying to breathe. Most of the time I’m a very tired, confused mess, but where my kids are concerned, I seriously feel like I have some sort of “reserve well” deep inside and have the ability to turn into supermommy when I need to. I mean, what other choice did I have?

Let’s cross our fingers, eyes, toes and whatever other disjointed body parts we have. The good news is, it’s only a 2 week program (I could re-up) but now I also have 2 other camps I can reach out to as well.

Wish us luck!

Hey, Did I Ask For Your Input On My Book? Oh yeah, I did.

blah blah 2Why can’t people just be quiet? Why must we always vomit from the mouth? Do you ever have moments where you so badly want to tell someone about the story you’re working on, but you know in your heart you really should just keep your mouth closed? I do this all the time. I have these ideas in my head and I’ve just put them down on paper, and I want so badly to share it with someone that I find myself begging and pleading with those around me to let me tell them about it. It’s usually my very tight writing friends, my husband and sometimes even my kids. (I know, I must be desperate).

Maybe I’m looking for validation that the story is good? That I’m on the right track? Sometimes that’s the case. Other times I just want to bounce the idea off of someone because maybe the story isn’t making sense and I want to brainstorm a bit. I find just “speaking” about my topic to someone helps me to break it out further in my head. Sometimes saying things out loud has a way of making things sound, well, not so great and then I know there are inconsistencies and issues that I need to address.

Of course, then there are the random people you meet in daily life who find out you write and ask “what are you working on?” That’s when I should just learn to be quiet and say, “Oh, it’s a YA novel, haven’t gotten it flushed out yet.” Yeah, getting me to be quiet is another blog onto its own. I invariably start spewing, hoping for that “OMG, that sounds amazing” reply. Invariably the response is anything but. They give me this quiet stare, or a little crinkle starts between their eyebrows and already I know that this isn’t going to go well. Then I start to back pedal super-fast and try to justify what I’ve just said. Sometimes I feel like I have to justify the entire novel!

This doesn’t just happen to me with strangers. I have an 11 year old son this happens with all the time. He’s a super high fuctioning Aspie and he loves to come into my room and read over my shoulder when I’m writing (which yes, I find distracting). I love the kid to death, but this is never a good thing. He’ll read something and that little crinkle starts between his own brows and then the inevitable line he quotes nearly every time. “Mom, I’m not trying to be rude but you really should write it this way.” He proceeds to correct my grammar (he is not always correct, by the way), changes my plotlines (all off of a one page reading of a 200+ page book) and explain, in detail, how people really don’t like science fiction and fantasy and I really should make things more real life, less violent and more interesting. After I’ve sucked in my breath, I smile and say, “kiddo, while I appreciate the suggestions, this is my book and this is how I want to write it.” This is usually followed by a “My mom just doesn’t understand anything” shrug and he says, “Just trying to help.” I always make the suggestion that he should write his own book and then he can write whatever he’d like. (that never works – for him that feels like homework and he skedaddles quickly away at any mention of that).

The bottom line on those crinkled brows. I don’t think people are judging. Well, maybe they are, but I did open up the can of worms in the first place. People are built to have opinions, we’re wired to think differently and if you put yourself out there, be prepared for what is going to come back. BUT, food for thought for all you people on the other end of that author’s rant… Here’s what a writer REALLY wants to hear (well, me) … Unless I’ve paid you a tremendous amount of money to edit and destroy my manuscript, or asked you to beta read, or really said, “tell me what you think,” what I really want you to do is just nod and smile. I’m just actually looking for support. I’m really just brainstorming out loud. Trust me, it won’t read like this when it’s done. Well, hopefully it won’t.

So folks, I’d love to hear from you if you have this same problem and, what is your solution?

A “Pool’s Worth” of Opportunity with a “Shotglass” of Tolerance

I came up with this tagline the other day as I was speaking with my 11 year old son’s principal. You see, my son has Aspergers and he is an incredible challenge to teach. He’s ridiculously smart, but so resistant and intolerant of doing anything outside of what he either “finds interesting” or “finds tolerable.” He reads incredibly fast, in fact he’s been reading since he was 21 months old. Actually read words to me before he even spoke. Ever since, he’s devoured books and weekly we travel to all the libraries around Nassau County and take out about 20 books a week on whichever topic he finds compelling. This week he’s breezed through Oliver Sack’s books THE MIND’S EYE, THE MAN WHO MISTOOK HIS WIFE FOR A HAT and he’s in the middle of HALLUCINATIONS. His “interest of the week” is perception and how the mind can play tricks on you. Of course last week it was graphic novels, the week before that it was space, pokemon and World Records. It changes and we’re trying not to get whiplash the way he switches it up so much.

So what’s the challenge? Presently, his feelings about school, and particular, the reading lessons. He’s read the chapter book his teacher is going over in class already while the class as a whole is slowly answering questions, chapter by chapter and he’s becoming resentful of having to sit there and listen to it. He tells them he’s bored and I don’t understand why they can’t have him do the curriculum required at his pace and then give him something more challenging. That was the crux of the conversation with the principal, who agrees with me. The trick is, what if they give Ben something more challenging and he decides it’s not “of interest to him?” That could easily happen.

Growing up he was always so ahead of his peers that school was easy. He breezed right through into 4th grade without doing much of anything. We were never concerned cognitively and used school as a place for him to socialize and if he wasn’t challenged enough, we spent our weekends at every museum, bookstore and library we could hit. But then he entered 4th grade and things started to go downhill. More was being asked of him, some of the kids were catching up, and for the first time he had a teacher that wasn’t a good match. Needless to say, it was a horror of a year and I’m going to leave it at that – I’d need another post just to rant incessantly and I’m too exhausted to do that right now. Suffice it to say, we moved him out of district to a different school with only 9 kids to a class. You’d think that would be perfect, but it has its own challenges. We have lovely teachers and aides who work with him, but in a school with kids who ALL have needs, the peer modeling isn’t the greatest and they don’t offer the same challenging classes his twin sister is getting back in his own district.

So, where are we? The principal is going to explore the opportunity for him to “travel” in certain subjects to different classrooms, maybe those in a different grade level, and see if that works. Or, they’re going to do some modifications on what he is learning. Fingers crossed it’s sooner versus later. Already at home we have private Spanish Classes (since his school doesn’t offer it).

In the meantime Ben has come up with an alternate theory about the universe. He’s called it “The Salpeter Theory of Consistency.” I’ve got calls in to the local school’s physics teachers to see if they can help us with “formulating a paper” for this theory so Ben can submit it. I told him  we’ll work on it together and he has to prove his theories, we’ll research and all that good stuff. He is completely on board.

Lucky for me I have a kid like this. I don’t think otherwise I’d ever know so much about Schrodinger’s Cat theory, the concept of Visual Agnosia (which is the inability of the brain to recognize or understand visual stimuli), and that preon is now one of the smallest particles out there (u-surping the mighty quark)

So like I said in the title… if I could take that shotglass of tolerance he has… and just stretch it to a tumbler or a high ball, or even a mightly ice bucket, the world will be this kid’s oyster!

Thanks for the ear and taking the time to read. Have an awesome day. 🙂

12 Days for the Power to Return – But is Life Back to Normal?

I was about to create a new post on “Night #12 No Power,” when thankfully the power came back on. On top of no electricity or heat, we had just been hit with a Nor’easter, dumping inches of snow back on the ground and so the kids had a two hour delay before they could go to school. I trekked into NYC to get to work and my husband stayed home, preparing to sit in the cold and wait hours in line for gas, since he now had the time.  After getting both kids to school, he came home and started shoveling the snow on our walkway when a man in a car came by and said “go in your house.” My husband looked at him warily and asked, “is everything ok?” The man smiled and said “go turn on your lights.” There had been some LIPA trucks on our block that morning, but he didn’t have any trust it meant much. My husband ran into the house and flicked the switch. I could barely understand him on the phone when he called me seconds later to tell me because he was so excited.

Since he’s not the kind of guy to just sit still, he actually filled my car with gas and then spent the day cleaning the house so when I came in that evening it would feel like home. He brought all the mattresses we had dragged in front of the fireplace back upstairs and made all the beds. He put things away we had simply dumped on the floor because we couldn’t see at night. He cleaned up all the wood chips scattered across the floor from the logs we had dragged in. He vacuumed the entire house. And, even though I asked him if the house was getting warmer, I found out later he had lied to me saying “not yet, but it’s coming on now.” Apparently a part on our boiler busted and he called the plumber while I was at work and somehow had someone come right in and fix it. He told me later, “you coming home and not having heat was not an option.” He picked me up from the train, we went to my sister-in-law in another town, grabbed all our things as we had stayed there the previous few nights, and came home. I walked through the door and welled up. To say he was my hero does not give him the credit he deserves.

So now you’d expect everything to go back to normal, right? The kids came home from school and immediately the television went on, wii games were played, the computer went on and they glued themselves to every piece of technology they had been missing. The house slowly warmed up and we put a container of milk in the fridge.

It’s now the next morning and the kids are doing what they usually do on a Saturday, watching TV and playing on the computer. My husband bought bagels and made coffee. It’s beautiful outside, warming up finally and I’m on my computer. But I’m finding I’m aimless. I’m nervous and scared and unsure, worried about the lights staying on. I’m worried for our friends on Long Island, those in my very town who have spent another cold night without heat. I’m worried for our infrastructure. It’s only November and the idea of a winter of this uncertainty is intolerable. I’m worried about how this is going to affect my children the next time my lights flicker. My daughter seems to be okay, back to ordering her brother around and my son, who has asperger’s, will slowly get back to his routine. These past 12 days were tough on him, but he seems happy this morning and “giving it right back to his sister.” So, things are slowly coming back to normal. Except I guess my bar for normal has been set pretty low right now.

I’m going to do a few things to make myself feel even more prepared. I’m ordering a cord of firewood for my house. I’m getting the chimney flue professionally cleaned. I’m going to Home Depot or Lowe’s and buying lanterns, stocking up on new candles, handwarmers and going to purchase some really good sleeping bags. I’m thinking the kind that people who camp out in sub-zero weather use.

So, for us, things will slowly feel better, day by day, but I don’t want to forget there is still suffering going on around me. We are trying to pay it forward, open our house to folks in need and asking our kid’s friends to spend the night to stay out of the cold.

I guess, unfortunately, dysfunction is the new normal these days. Let’s hope it ends quicker than later.