A Part of Something

There are a lot of things that happened to Jack and I as we traveled to Massachusetts for Jack’s special hockey tournament today. But mostly what happened is that I felt the powerful embrace of community.

I don’t know how many teams are participating in the Special Hockey International Tournament, or how many players. But I do know that when you put them all on the ice for an opening ceremony in front of a cheering crowd and sing three different national anthems, it is a powerful thing.

The arrow points to Jack.

Canadian athletes are here (I had to give one of them 50 cents because the vending machine didn’t take Canadian quarters, eh?), British athletes are here (best team name: Werewolves of London) and, of course, American athletes are here.

I stood in the stands watching my son twirl in his repetitive spins on the ice as an arena filled with people who get what he was doing sang the national anthem. I got tears in my eyes as I thought of how important it is for my autistic son to have the opportunity to hear a crowd roar for him—and for kids and young adults like him. I thought of how amazing it is that there are teams and organizations for these kids, who not that long ago weren’t even welcome in schools.

I am so grateful that Jack gets to experience this. I am so glad that *I* get to experience this.

We had an equipment glitch tonight, meaning that Jack’s gear was accidentally left at the hotel instead of taken to the arena, so he and I spent his game watching and cheering instead of playing.

We cheered when a small member of the opposing team hit a puck toward our goalie, who let it slip by him for a point that probably meant a lot more to that small kid than it did to our side. We cheered when one of our players fell down and a player on the other team helped him up. We cheered for the kindnesses and inclusion I felt all day.

I felt that kindness and inclusion when the team dads took charge of Jack in the rest stop bathrooms. I felt it when the coach put his hand gently on Jack’s shoulder to guide him into the opening ceremony so I could watch from the stands. I felt it when a 17-year-old teammate chased Jack down and brought him back to me when he was trying to edge away. I felt it when the sister of a teammate helped me play Simon Says with Jack to keep him entertained and happy when we were waiting for his team to change out of their uniforms.

But here’s the thing: I’m not the only one who felt it. Jack felt it too. Yes, there were times today when he was kind of a pill, and sometimes he doesn’t seem as engaged in his team as much as the other players are. But I heard him yell, “I want to sign up for hockey again!” after we got to our hotel and I felt his calm happiness on the bus all day and I watched him finger the Montgomery Cheetahs trading pins he got today and I could tell he felt it too.

I see the kinds of young men that these special needs hockey players are becoming and I hope for the same for my son. These teenagers are thoughtful, caring, helpful and have so much to offer. If Jack turns out like them, I’ll be thrilled.

I spent the day today glancing at Jack and thinking, “I am so in love with that kid.” But I am also so in love with this team that embraces him and pushes him and, mostly, makes him part of something.

Here We Go, Cheetahs, Here We Go!

Tomorrow morning Jack and I head out for his hockey tournament. It is the Special Hockey International Tournament, but don’t make that an acronym, okay? For those of you who donated to Jack’s hockey team earlier this year (and the team is always taking donations/looking for businesses who want to sponsor the team), you should know that your money helped subsidize a lot of really cool kids on their trip to Boston. Thank you. You are making a difference to these kids and families.

Okay, enough sincerity. Let the whining commence. Jack and I are going to Boston on the team bus. Yes, my pukes-whenever-the-wind-blows son and I are going to participate in a NINE-HOUR bus ride. I might have wanted to think about this a little more before I giddily signed us up in a fit of manic belief that THIS IS GOING TO BE SUCH A GREAT CHARACTER BUILDING EXPERIENCE FOR JACK! YES, LET’S GO ON THE BUS! LET’S GO ON THE BUS! LET’S GO ON THE BUS!

Also, our bus leaves at 7 a.m. tomorrow. I need to find a sport that takes place in the late afternoon. In a bar. Like billiards.

Anyway, Alex is in charge of Team Maryland and I am in charge of Team Barf All Over Boston for the next four days.

It is going to be AWESOME.

I plan to blog, photograph, tweet, facebook and eventually coherently put together a few thoughts in a respectable way the hell out of this weekend.

Wish us luck! GO CHEETAHS!

Autism Unexpected: Teaching Social Skills at Home

three_brothers_s640x427

It’s 8:45 p.m. and my son Jack and his little brother are supposed to be asleep in the bedroom they share, stacked in bunk beds one atop the other. They, however, are wide awake and chatting with each other.

The mom in me thinks I should march in there, separate them and threaten them to within an inch of their lives if they don’t fall asleep right this very minute!

The autism mom in me, however, is delighted. I can’t tell what they’re chatting about—if I had to guess, I would wager that it is a conversation about a complicated video game mission that the two of them are creating in their minds—but I don’t really care.

They’re talking. One speaks, then the other follows up with a related sentence, and it continues for as long as I listen. It’s not really that big of a deal, unless learning how to hold a conversation is not something that comes naturally to your child.

This is the advantage I have in parenting a child with autism who has both an older and a younger brother. Social skills never stops at my house.

There have been many times when my family is out and about somewhere, and my three kids are running around like the little chaos machines that they are, and I think, “Wow, this would be so much easier with fewer children.” But then I stop and think, “No, really having three kids makes life so much easier.” And that’s not just because they play with each other instead of hassling me to play Candy Land.

My parenting goal when it comes to my children is that I want to make them a unit. I want them to be able to count on each other and be each others’ best friends. I want their brotherhood to be one of their strongest, life-long bonds.

I have long accepted that eventually they will use that bond to become united against me. I am 100% okay with that.

This sibling bond became even more important to me once my middle son, Jack, was diagnosed on the autism spectrum a few years ago. Since then, having one brother ahead of him in school, and one behind, has been nothing short of a godsend. Being sandwiched between brothers has helped in many other ways as well, especially in the social skills arena.

Jack has a fair amount of trouble relating to his peers. While his teachers are fantastic, they don’t have time to try to get him to engage with the other kids as much as he needs. Jack has a social skills group once a week, but an hour of group time cannot make up for the other 167 hours in the week. Adults will socialize with Jack, but that’s not his main problem. He needs to learn to engage with other children.

What Jack does have are brothers. His brothers are constantly socializing with him, pushing him to participate in appropriate social behavior. They ask him questions, they include him in games, they have hurt feelings and desires that require Jack to learn to navigate these kinds of interaction, but in a safe place.

I think that we are doubly fortunate in that Jack has an older brother who paves the way for him (and me!) both in school and coming-of-age experiences. Having an older brother helps Jack reach, stretch and grow. Jack’s younger brother is wonderful because he looks up to Jack so very much, and it is so valuable for Jack to get to be a role model. Not to mention that, in certain things, Jack and his younger brother are very much on the same developmental level, so it is lovely that they can share their interests.

However, learning how to interact with his brothers can’t be the be-all, end-all. They learned his mannerisms and quirks so well that they will often compensate without even thinking about it, letting Jack slide by without utilizing the skills he is learning. It is so important that Jack have typical peers around who don’t know what he’s thinking.

Enter my other sons’ buddies. Because my three kids are so close in age, they like to do many of the same things. When my oldest or youngest son has a friend over, Jack gets to practice his social abilities to figure out how he can get involved in what they are doing.

Plus, his brothers act as a sort of buffer between Jack and other kids, who may not understand his peculiarities.

There are times when we have kids over to play with Jack as well. Those playdates can be hard. It can be exhausting to try to get Jack to engage with a peer for an hour or two. I imagine it’s tough for Jack as well. When Jack (or I) needs a break, his brothers are there to step in and shoulder some of the pressure of playing.

Mundane things can teach social thinking skills when you do them all day, every day. Even something as simple as filing into the bathroom at night to brush teeth can be a lesson in patience and turn taking.

Having two brothers helps Jack with so much in the social skills milieu. I believe that the more success and fun he has with his brothers, the more interested he gets in non-familial children. Having brothers around helps Jack see that there are benefits to interacting with other kids. Furthermore, my other children can be role models for typical behavior. (Although, frankly, they have their own quirks, too.)

All this said, there are downsides. Families with only children have so much more time and resources to spend with their autistic child. When you’re focused on only one child, it is so much easier to target exactly what he or she needs; there is no other child with competing desires. Every time I’m waiting for Jack in a speech or occupational therapist’s waiting room with my other kids, I think about how much easier it would be with just the one.

Let me tell you also, that it’s not all smiles and sunshine in my household. Yes, my kids all get along and play together beautifully—when they’re not screaming at each other and trying to commit fratricide.

Still, for my family, the benefits outweigh the negatives. More than anything else, I am so grateful that Jack gets to experience the greatest social benefit of all: having two best friends who accept him as he is. Yes, they get frustrated sometimes and, yes, sometimes Jack gets annoyed, but for a child who wants to socialize, as Jack does, having two willing bodies nearby is the best thing we could hope for.

Originally published at Autism Unexpected on April 26, 2011.

The Myth of the Easter Bunny

So, it turns out that mice are really squirmy when you’re trying to squirt medicine into their tiny little mouths. But it also turns out that medicine seems to help with the scratching, thank goodness. It also turns out that I will be out of town this weekend and Alex will have to give the mouse medicine twice a day.

Commence to laughing now.

But this isn’t another post about mice. (Okay, Lynn?)

Yesterday was Easter. Easter isn’t a big deal around here. In fact, I think I kind of shocked my mom the other day because I told her that after we put her in her nursing home (the cheapest we could find, of course), we would visit her every year without fail on Easter because it’s one of the less important holidays. She then informed me that in fact it is perhaps the most important Christian holiday of the year.

But this isn’t a post about my Godlessness. (And frankly, Mom, whose fault is it that I was raised the way I was? I hope you like your pagan retirement home in the bad part of town.)

This is a post about Sam. Sam found out the truth about the Easter Bunny yesterday. He has been a little suspicious about the magic holiday characters for a while now, but things came to a head yesterday after our egg hunt when he wanted Alex to hide the eggs for a second hunt and Alex said, “I don’t want to hide the eggs again.”

Again.

So The Myth of the Easter Bunny toppled, followed shortly after by The Myth of Santa Claus. (The Myth of the Tooth Fairy has not yet been discussed.)

Sam, surprisingly, was completely unfazed. I think we were all ready for the formal question and acknowledgment of the Great Lie. Fortunately, he couldn’t have cared less that we lied to him.  We talked about not telling his brothers or kids at school, that he still gets gifts from these characters and that he could help us with these types of holidays now that he knows the truth.

He was thrilled with that news and now seems to have plans for instigating a special Thanksgiving turkey character that leaves gifts.

It is possible that we have created a monster.

It Was Either This or Buy 58 Mice at $2.59 a Pop

Occasionally, one of you will ask me about my mice because I haven’t posted about them here lately. I’m protecting them from overexposure. 

Anyway, the mice are good. For the most part.

[DUM DUM DUM!!!!!] <—That indicates ominous music

I mean, Whiskers is kind of a jerk and I’m slightly annoyed that Poseidon’s curly fur has straightened so that it is hard to tell her apart from Squeaky, but whatever.

Thanks a lot, Poseidon.

Sadly, there is a new way to tell Squeaky from Poseidon: the distressing open wounds on her head. I’m not kidding.

Poor little smooshy mouse.

I noticed that she had a little bald spot and that it was red, but then it seemed to get better so I’ve just kept an eye on her, but today I noticed that it was all red and inflamed again and she was scratching a lot.

Fortunately, she is still scrappy enough to defend herself from aggressors who try to steal the special treats I put in Mouse Town.

Look at her straight-arming Gerbil. I’m so proud.

So here’s the thing. I wanted to take her to the vet when I first noticed her head problems, but Alex was all, “Fifty-nine dollars for a vet appointment? There will be no heroic measures for a three-dollar mouse!”

Because it looked like she was getting better, I agreed, but when it started looking bad again today, I marched up to Alex, who was taking the day off, and gave him a big speech about how if he can gallivant off to Phish shows all the time that I can take my mouse to the vet.

Because he’s smart, he agreed. Also because he’s not an asshole. He did roll his eyes dramatically, however.

I called up the vet and their not cat/dog guy was able to squeeze us in at 3:30. Unfortunately, I had a doctor appointment at 2:30, which meant it was extremely unlikely that I would be done in time to take Squeaky to the vet.

Which is how Alex was forced to take Squeaky and a couple of kids to the vet. Imagine eye rolling so severe that he almost fell down.

I ended up meeting him at the vet. He was easy to spot because he was the large, embarrassed looking man with a tiny mouse cage in his hand. I let him go home, although he tried to leave the kids with me. Nice try, Alex.

I was a little disturbed when I went into the exam room and saw what looked like a salad spinner on a scale. It had a lid too, which also made it look disturbingly like a pot.

“You’re not going to cook her, are you?” I asked the tech.

They didn’t cook her, nor did they have to fly in special, tiny instruments from El Paso.* What the vet did do is give me two medications that I have to force her to take twice a day each. How the Christ do you medicate a mouse?

“She’s a nice mouse. You’re lucky she’s not a biter,” the vet told me.

Yeah. Not yet.

Also, Squeaky’s bill came to $150, for which I could have purchased 58 new mice.

Frankly I was relieved that Squeaky got medicine and not a death sentence. It is possible that there are other things at play that the medicine won’t help and that we will have a dramatic goodbye episode between Quinn and his mouse, but Jeebus willing, it won’t come to that.

‘Til then, I will continue to give Squeaky her morning and night medicine. I can do it right after I give my cat her morning and night medicine, but before I inject the cat with her subcutaneous fluids, right after I dose Quinn with Miralax, treat Sam’s psoriasis elbow and perform oral surgery with a toothbrush and dental floss on Jack’s soft little teeth.

How did I end up running a goddamn infirmary here? You’ll excuse me as I have to go make a meds timetable so I don’t forget anyone. Also, I have to pry open some mouse jaws and insert .02mL of medicine. Twice.

* Yet another Guess That Pop Culture Reference Contest! *no prizes will be awarded; void in 49 states.*