Camp Awesome

Remember back when school was in session and I used to be sad every single day when I would get a note or an email from the teachers telling me what a bad day Jack had had? Because I remember it vividly.

Jack has been in full-day camp this summer—at the same camp he attended last summer—and every day for the past five weeks I have spoken to the teachers at the end of the day and they have told me, “Jack had a great day!” “Jack was super cooperative today!” “Jack did everything we asked him to!”

Sure, there have been a few scuffles here and there, but not even anything to stress out about. And, sure, it’s camp and not school, but a lot of the things he has to do are definitely non-preferred activities. Jack has even stepped up and above in helping plan the end-of-camp performance he’ll be a part of this Friday.

It’s like he’s a different kid.

But he’s not.

What’s different is the environment.

It’s a small class taught by therapists who know how to teach kids with developmental disabilities in a completely positive environment and who truly believe and take nothing but joy in Jack.

It gives me hope that he will do well in his smaller, special education class at school next year.

But why am I posting about this today? Well. To answer that, I have to go back four weeks, when one of the teachers pulled me aside at the end of the day to talk about Jack’s bike. See, they bike ride every day and I had sent in a bike with training wheels.

They thought Jack was ready to try riding a two-wheeler. Jack has always been hesitant on his bike. He has absolutely NOT been interested in taking those training wheels off. Too bad for him, he’s not in charge of the screwdrivers in the house.

He’s been working on this every day at camp. Last week, they had him ride his bike for me, which was so incredible. At that time, he still wasn’t starting by himself and could only go about ten feet.

Today after camp, they went out in the heat to set up safety cones in the parking lot just for him. (See: Camp Awesome) He showed me that he is COMPLETELY, INDEPENDENTLY RIDING HIS BIKE. He was able to start by himself, turn his bike during his three laps, and stop all by himself.

Starting by himself.
Turning during his three laps.
Stopping by himself.
Oh—and grinning like the proudest kid in the world.
Amazing, huh?

In case you’re wondering, I’ve already pretty much signed Jack up for a new, great program that Camp Awesome will be holding next summer for kids like Jack. Feel free to email me if you’re local and looking for something like this.

And Then Quinn Devoured All of Us

So, Team Stimey is in family therapy because….obviously.

There are reasons, reasons that mostly have to do with being a neurodiverse family in a world that isn’t always friendly to neurodiverse peoples and a desire to have happy kids who grow into happy teens who grow into happy adults.

Step one: family therapy.

Well, step one is actually creating a happy home environment, but family therapy comes somewhere between steps six and twelve.

Anywho.

Thus far, Jack has been doing most of the therapy, but our therapist wanted all of Team Stimey to come in this week. So we did. And we participated in a puppet show. And said puppet show was so illustrative of Team Stimey’s family dynamic that it was almost embarrassing.

The plot that the munchkins came up with was simple enough. Jack’s pirate attacked Alex’s monkey while Quinn’s dragon puppet set everything on fire. Sam had a police man puppet and did a great job trying to restore order—right up until the dragon ate him. Oh, and me? I was the firefighter running around ineffectually trying to put out fires.

In the end, I’m not sure if just Quinn survived or if Jack and Quinn survived, but I do know that the dragon ate most of us.

Frankly, the only thing that would have made this little metaphorical play more true to life is if my puppet had whipped out an iPhone and taken a picture—which I really badly wanted to do.

Afterward, the therapist interviewed the puppets. When she asked me how I felt when I was eaten by the dragon and I said, “At least it was over,” I knew almost immediately that my answer was wrong.  I mean, she claimed there were no wrong answers, but deep down I know that there were and I’m pretty sure that I gave one of them.

Regardless, at no point did the therapist’s eyes widen in horror, and we are still on her schedule, so evidently we are not outside the realm of help. Also, I’ll let you know when she finally tells us the secret to happiness, because I’m pretty sure that’s what happens in therapy, right?

*****

Also, be sure to check out White Knuckle Parenting this week. We took the kiddos out to a Chinese restaurant for the first time in their young lives and then I wrote about it.

The End of IEP Season

So, it turns out that I have done two things with my post about Jack’s IEP meeting. I have (a) caused every parent of a second grader to freak the fuck out about what is going to happen to their kid next year, and (b) learned that an Asperger’s program is not a common thing in public school systems.

I would like to start today by addressing Issue the First. I am sorry. Please don’t freak out. Every kid is different. Your kid will be okay because you are advocating for him or her. Keep an eye on said child and keep doing what you have been doing. Really. Hope for the best, prepare for the worst, and keep your eyes open. Keep putting one foot in front of the other.

As for the Asperger’s program, everybody was all, “Asperger’s program?! What the whut whut?!” It’s like the time I was emailing with a parent in Los Angeles about a problem her kid was having and I suggested that maybe she talk to the school counselor and, via email, she managed to convey incredulous laughter because, hello, LAUSD. They don’t have, you know, things there. Oh, and fuck you, you and your Montgomery County, Maryland choices.

One day I will think before I type. One day. Probably not today.

In other news, I had another IEP meeting today, but this one was for Quinn. He has an IEP because he’s been getting OT services for a couple of years. Today he graduated. It felt a little weird for them to take away his disability code and for me to be okay with it. It was the right thing to do, weird pencil grip notwithstanding, but I felt like I should upend a table and start yelling about services for my baby. What I did was stand up, say thank you, and then went home. There’s something to be said for 15 minute meetings.

The other result of today’s meeting is that I do not have any more IEP meetings this year. Thank God. In fact, I might refuse to discuss special education for the next five weeks just on general principle.

That, at least, would prevent me from scaring all of you to death. You are welcome.

*****

Thank you so much to Cheetah contributors the Paulsons! It’s not too late to donate and it is certainly not too late to come to the Cheetah-thon on Saturday from 5-7 pm at the Rockville Ice Arena. You guys, it’s going to be so much fun and there will be raffles for fantastic prizes and fun skating and great families and we are going to have such a blast!

Jack’s Autism Awareness

Photo by Katie Dance

Jack has known about his autism for years. I’ve always wanted it to be something that has sort of always been in his consciousness rather than sitting him down when he’s older and laying such a big concept on him, as if it were a secret when he was younger.

I tell Jack and his brothers that everybody’s brains work differently and it just so happens that the way Jack’s brain works has a name, and that name is autism. Everyone has things they are good at and things they have trouble with. It’s just that it is different for everyone.

Recently, however, Jack has really started to quietly investigate his autism. He’s been telling people, “I have autism,” or upon meeting new people, asking them, “Do you know that I have autism?” I see this as the first steps in figuring out for himself what autism means to him and how he is going to approach it in life.

Needless to say, I am watching with interest.

The other day, we were in the waiting room before Jack’s OT session. There was another kid there, who is often there when we are. He has a visible disability and, although I get the impression that he does speak sometimes, he rarely does in the waiting room.

This child was trying to interact with Jack. The two of them weren’t in sync. Jack was under a chair (he likes to be under things) watching this other child. After trying to get Jack’s attention a couple of times, he walked over to a child gate in the hallway and started to play with the mechanism.

Jack started to get interested. “He must have autism,” he said to me. He came out from under the chair and walked up to the other boy. “Do you have autism?” he asked.

The other boy didn’t answer and then his therapist came out to take him to a room. Jack immediately stepped over to the gate and began to inspect the mechanism and investigate the way it worked until his own therapist came to take him to his session.

I was fascinated by this whole exchange. I wondered if Jack picked up on the difference in the other child and didn’t have a word other than autism with which to describe that difference. After the session, when we were back in the car driving home, I decided to ask Jack about it, although I was unsure that I would get any sort of response.

“Jack, why did you think that other little boy had autism?” I asked.

Jack was quiet for a minute, then said, “Because he was curious.”

Cool, huh?

I love that curiosity is the common bond that Jack picked up on. I love that although Jack is aware that his autism makes him different than most of the other kids he knows, he sees such a great quality as being curious as a defining characteristic. I love both the inquisitiveness and self awareness that he is starting to demonstrate.

Flat out, I just love that kid.

Sucktober

Back when I was in college, I had a friend who claimed that October was the worst month and that bad things always happened then. I hadn’t had that experience, but he was adamant. Ever since, I’ve been suspicious of October and have kind of looked at it with the whale eye.

Splashy is giving you the whale eye.

Enter 2011.

It could be worse. I know. God, I know it could be worse. I would like to acknowledge that, knock on wood, and then carry on to complain without dignity about how terrible this October has been. (I know you’re not surprised. You know how whiny I am.)

My house is basically crumbling around me. And I say that with the greatest of hyperbole.

But, c’mon, people. Do you want to know what has gone wrong in rapid succession in my home this month? I don’t care. I am in Whine Mode; I’m telling you anyway. Seriously, people, this shit is unprecedented.

Here’s the list of Things That Are Terrible in Stimeyland These Days:

• My fridge, followed by…
• The replacement fridge. See, our original fridge stopped cooling things. Alex and I had a long dance of, “I think it’s okay,” followed by, “Huh, it might be getting warmer in here,” followed by, “Let’s turn it down all the way to ‘1,’” followed by, “Maybe it goes the other way, let’s turn it all the way to ’10,'” followed by, “This fridge is broken.”

So we got a new fridge, which was a floor model that we got at an excellent price. Unfortunately that fridge (1) had a broken water pump, (2) turned out to be missing at least three pieces, (3) leaked air out the side, and (4) made everything in the fridge section freeze solid.

We returned it and purchased a new fridge, which we insisted come in a box, brand new. Success.

• Our wood floors. This saga will be relayed tomorrow. Rest assured though, it fits in here.

• The stove. Fingers crossed, this one looks like it might turn out okay. Although it WAS disconnected for more than a week during our re-tiling of the kitchen, which, had we known about the Great Financial Hemorrhaging that was about to happen, we might have put off. (But it’s SOOOO pretty!)
 
• My hard drive. You’ve already heard about this one. 

• Our alarm system. Technically, WE broke this because we had to cut the wires after we pulled up the carpet only to find that the wires ran diagonally across what would now be bare floor. This rewiring was a pretty easy fix, but annoying.

• The heater in my car. It still works, but only after it blows out freezing cold air for a good 10 to 15 minutes. I’m wondering how long we can put off this repair before it gets really troubling.

• Our house furnace. Today was SPECTACULAR in the sheer number of things that decided to go ahead and quit on Team Stimey. Our furnace hasn’t been working since Friday, and we’ve had two visits from the heater people, and today our part finally came in and the heater guy showed up unannounced at five minutes to eight, just when I was ready to take the munchkins to school. Then, when Alex was trying to let the guy in, the dog made a break for it and disappeared down the street. It was quite the scene.

The dog is back. Although I’m pretty sure a large part of Alex didn’t want to chase after her.

Well, the heater technician tried to fix the furnace, but was unsuccessful and unearthed this rusty piece that he was so impressed by that he took a photo of and kept saying that it looked like something one would find in an undersea shipwreck.

So we’re buying a new furnace. Yay.

Not really yay.

You know those glowing heat lamps they have on outdoor patios at restaurants? I have one on an end table right now. It’s the only thing keeping us warm.

• Alex’s motorcycle. Alex used to have this cool old motorcycle with orange racing stripes. It could do anything. A car hit it once and dragged it for several blocks. (Alex was not on it at the time.) Alex chased it down and was able to ride it home. It was bad ass.

His current motorcycle gets tapped and says ouch. It’s had more than a few issues in the five years that Alex has had it. Sadly, it’s looking like it’s most recent trip to the mechanic will be its last. This news also came today. That poor wussy little bike.

• Oh, right, and the straw that broke the camel’s back. I showed up at speech therapy today with all three kids, one of whom had been whining for an hour about not wanting to be dragged to therapy any more and why does Jack need to go to therapy all the time and when will he not have to go to therapy anymore and EVERYTHING IS THE WORST THING IN THE WORLD, which, honestly, I agree with, and then the receptionist told me that Jack’s therapy was no longer covered by our insurance and then I COMPLETELY LOST MY SHIT.

I (of course) started crying and was all, “BUT I CAN’T AFFORD TO PAY FOR THERAPY OUT OF POCKET!” with the subtext of “BECAUSE EVERYTHING IN MY LIFE IMPLODED THIS MONTH!” I was not coherent enough to realize that something similar happened with Jack’s occupational therapist and that it could probably all be worked out if I just calmed down already, did the session, and then called the insurance company.

What I did instead was seize on the less-than-24-hours-notice cancellation fee. I pulled out my credit card and started blathering about paying that because I couldn’t stay for the session and, oh my lord, it was quite the scene. To make it even better, the waiting room was, like, packed. And suddenly eerily quiet.

That poor receptionist. Jack’s poor therapist, who had arrived at the front by this time. They looked a little shell shocked. They told me I didn’t have to pay the cancellation fee and I took a deep breath, wiped some tears and told Jack he wasn’t going to see his therapist today. He had been happily dismantling his therapy binder during this whole thing and was delighted to be able to go home. I think he might have exclaimed, “Yay!”

Don’t worry. I already emailed to apologize.

• Oh, and Jack decided he doesn’t like his only pair of sneakers, so he hid them. And we can’t find them. And he won’t tell us where they are.

I’m so over Sucktober. Bring on Bettervember.

I Need To Know How To Make the Horse Drink

You can lead a horse to water, but you can’t make him drink.

But what if you really, really need him to drink?

In case you’re wondering, Jack is the horse and I’m the jerk that can’t make him take a drink. And drinking isn’t really drinking, it’s getting him to do anything he doesn’t want to. And as long as we’re breaking down the metaphor, let’s call Jack a mule, because that kid is the most stubborn motherfucker I have ever met.

Like, how do you MAKE a kid do a math problem if he doesn’t want to? And how do you MAKE a kid write a sentence? And how do you MAKE a child do something at occupational therapy other than tell his wonderful therapist “I hate you,” and then hide under a table?

That last little bit happened this afternoon at Jack’s OT session (if you can call 12 minutes a session), resulting in us deciding to take a break for a few weeks while we I try to figure just what the hell to do to make my goddamn horse drink.

The OT session also caused me to cry in one of the last semi-public places I hadn’t yet shed tears in Maryland. Of course, that’s not all on Jack. Quinn scampered past me on all fours to join Jack under a table, which led me to make a joke about how maybe Jack won’t do what he’s asked to because I’m the worst mother in the world because obviously all three of my children are wackadoos and then I felt it coming, said, “I’m going to burst into tears,” and then I burst into tears.

Classic Stimey. 

While this last session pushed me over the edge, various permutations of it have been taking place for several weeks at OT and also at school. Speech therapy has been going great, mainly because our speech therapist is on maternity leave and we have a couple of months off.

I’m not quite sure what to do. I know I’m not the worst mom and I know that Jack rocks the free world, but sometimes I get really frustrated.

I have some thoughts rolling around inside my head, I have a couple of appointments set up, I am enrolled in a parenting class, but wouldn’t it be nice if Jack could just understand that if he drank, he would be done drinking and wouldn’t have to do it again for a long time, he could then go on to use his little mule-hooves to knock Legos around, and he might even find that drinking isn’t the worst thing in the world.

(You may have gotten lost in that metaphor, but trust me, I know exactly where I am.)

It’s been a little rough as of late.

I would stick around and torture you a little more with my mule imagery, but Jack’s IEP meeting is in, eep!, 10 hours, and if I don’t prepare for it, all I’ll be able to do is walk in and say, “Okay. I see Jack as a mule…”

Lessons in the Face of Rudeness

Do you ever have one of those days where nothing goes right and you decide that you’re a terrible parent, only to have your entire mood turn around when someone tells you something unexpected and wonderful about your children and your parenting skills?

Isn’t that the best?

Yeah, I had the exact opposite of that happen to me today.

We were at OT this afternoon for Sam, because Sam gets OT now because he has some handwriting issues, and my children were all insane in the membrane, as they are wont to be, running around like little maniacs while the OT was trying to talk to me about how we can just get Sam to slow down and write neatly already.

I flashed back to when I had all three of them at a doctor’s office and they weren’t even being all that, let’s say “enthusiastic,” and the doctor told me, “I feel for you.” I’m not sure if that’s because I had just made a joke that even though Jack is autistic, look at him drawing quietly in the corner, and she was “feeling for me” because I have a child with autism or that she was “feeling for me” because my children have the decorum of wildebeests.

Honestly, I’m a lot more upset about the latter.

I spend a lot of time when we are out in public giving lessons when my children are rude. If you were to run into me somewhere, you would likely hear me saying, “This is a place of business, so we do not run,” or “We walk on the right side of the hallway,” or “If someone says ‘excuse me,’ you look up to see if they are talking to you and then you move out of the way.”

That last lesson was taught in a 7-11 and resulted in the gentleman next to us sheepishly saying “excuse me” and moving out of our way as we left. He told me it was a good lesson.

The lesson I taught in the face of rudeness today was, “When your OT calls your name, you don’t just ignore her until you are finished reading your sentence.”

Anyway, all of this constant correcting makes me feel like I am the worst mother in the world with the worst behaved children in the world. I said something to that effect when Jack tossed Quinn into a glass wall this afternoon.

The therapist then told me, “No, you’re one of my favorite moms. I think you’re doing a great job with them. You’re trying. So many parents don’t seem to try.” That may not be exactly what she said, but it was the gist of it. I don’t remember exactly because I was too busy feeling happy, trying to pay attention, and attempting to prevent any of my kids from getting on the elevator without me.

I do remember driving home feeling pretty proud of myself.

I was proud right up until I had to make a stop and, on the way back to the car, accidentally threw Quinn to the ground, bloodying his gums and injuring his cheek on the door to the car. What followed was a carnival of “I hate you, Mom!”s and “You did that on purpose!” from one child, followed by a vigorous defense of me by another child, which resulted in a verbal fistfight between the two of them.

I arrived home to an untidy house, dinner that had to be made, homework that had to be finished, and a rapidly disintegrating self esteem.

Parenting is hard.