Our Family Has Autism

It's that time of the year again folks: World Autism Awareness Day! If you missed my blogs from the past two years, they're required reading before you continue any further. Just kidding, but I will link them here: http://megcentric.blogspot.com/2013_04_01_archive.html and here: http://megcentric.blogspot.com/2012/04/rylan-awareness.html.

Today I want to write about Pippa. Writing about my neurotypical child probably seems an odd choice for World Autism Awareness Day, but here's the thing: autistic children don't grow up in a vacuum. Rylan has autism, so our family has autism. Since Pippa was born I've become increasingly interested in the intricacies of sibling relationships in families that include an autistic child. How are they different from neurotypical sibling relationships? How are they the same? How do the differences impact our parenting? What will Boog and Peej's relationship be like when they grow up? Will I ever stop asking questions long enough to learn some answers?

I did a little informal poll of my Facebook friends with autistic children yesterday and got some very useful stuff, a lot of which sounded very familiar, so that gave me the courage to dive right into this complicated topic. As I see it, parenting NT kids and autistic kids together breaks down into the good and the...tricky. I'ma start with the tricky, just so I can finish up with the good, because the good is very good and we shouldn't forget about the good. Good? Good.

The Tricky:

Discipline. Whoa boy. Having a neurotypical child after our autistic child has opened up a whole other can of worms discipline-wise. I imagine it's tricky if your autistic child comes after a NT sibling or two as well, but this is my experience. I was used to parenting an autistic child, and a particularly chill autistic child at that, so I began parenting Pippa as an autistic child. It did not go well.

Rylan dislikes time-out so much (which involves sitting on a stool in the corner of the kitchen with his hands held down so he can't stim until the timer goes off) that all I have to do is say, "RyRy no (insert undesired activity here) or you'll get time-out" and he instantly stops most of the time. However, there are also a lot of things I let slide with Ry because I know he simply isn't capable yet of say, staying completely quiet in a movie theater or staying at the dinner table without frequent prompting and occasional (gentle of course) physical restraint.

Pippa requires a different approach. Pippa laughs in the face (often literally) at the threat of time-out, so we must be prepared to follow through. I've given her time-out in grocery stores, on street corners, and most recently, in an airplane (though if you ask me the whole airplane experience is one long, expensive time-out for all of us). She also is expected to do things that Rylan is not. She must feed and dress herself (with a little help sometimes), brush her own teeth (again, with a little help), pick up all of her toys, say "please" and "thank you" and listen to others when they're talking. If she fails to do some of these things, she is punished. With Rylan, we, and a team of specialists, are working very, very hard to get him to do all of these things. We drill them every. single. day. But we don't punish him for failing to say "please" when he's never successfully said or signed it by himself. That would be insane and pointless, like punishing Pippa for not washing her own breakfast dishes yet or occasionally wetting the bed.

These are the facts about disciplining my kids and I'm comfortable with them...until I start thinking about "fairness" and what others might think. What do the other moms at the park think if I scold Pippa for not waiting her turn on the slide, but don't reprimand Rylan for failing to say "goodbye" to a friend? What does Pippa think when she sits in time-out for throwing food on the floor and acting a fool at dinner and watches us spoon-feed her older brother while he shakes his head and flaps his arms?

My friends noted similar problems with discipline. Angel, who has 3 boys, the oldest of whom is on the spectrum said, of the discipline conundrum, "It's hard, they aren't the same kind of kid so you can't parent or discipline them the same way. And that's sometimes hard to remember." Another friend, whose blog I'm just going to link here because it's simply too fantastic and I want to quote the whole darn thing ( http://goodscratch.blogspot.com/2012/11/slipping-into-normal.html ) related an incident in which she wasn't sure if she should discipline her autistic child and, since it happened in front of others, not only was she worrying about whether her son's actions were intentional, whether to discipline him, and what would be the appropriate consequences if so, she was also worrying about what the other parents were thinking about her.

See? Tricky.

The fairness issue also comes up when we plan our family financial and time budgets. When we began ABA here in South Carolina, Ry was going 25 hours a week after school. That meant we had every day from 11:15-5:45 booked. It also meant co-pays that reached roughly what Dylan used to make as a graduate student. This is the minimum level of treatment recommended for autistic children, but ultimately it just wasn't sustainable for our family. It meant no playdates for Pippa, no extracurricular activities, and, well, less money to spend on anything related to Pippa. Rylan needs ABA, but I don't just have Rylan. I also have Pippa. I have to think about her educational, emotional and physical needs, too. We ended up dropping to 15 hours a week and while there is a flame of guilt slowly burning a hole in the bottom of my stomach when I think of those lost 10 hours, it has replaced the larger flame related to sacrificing Pippa's welfare for Ry's.

Worries. There are a lot of things we worry about in regards to Pippa. Does she feel rejected when she tries to play with her brother and he ignores her? Will she have trouble relating to other neurotypical children because her only sibling is autistic and non-verbal? I actually put her in preschool because of this particular worry. I'd noticed that when she met other children, she would plant herself right in front of their faces and stare at them expectantly. This is what Rylan does when he wants to get someone's attention, but it's not as effective or welcome to other children as a simple, "Hi!" which Pippa is capable of delivering.

And of course, there's the ultimate worry: what happens when we're gone? What have we saddled our little girl with? We don't know what Rylan will achieve. He may live on his own and hold down a job and have a relationship and need only the kind of loving support most siblings provide each other, or he may never communicate in a language we can understand, never write or learn to use a computer, and need someone to closely supervise his every daily need. If we cannot save enough money to facilitate this...if we both die suddenly and unexpectedly at a young age...if public services are not available...if he falls through the cracks in every way...will Pippa be there to catch him? What will that do to her life, her happiness, her relationships? What will happen to both of them if she doesn't step up?

Tricky doesn't seem sufficient to cover this...

There is a beautiful side to the autistic-neurotypical sibling relationship, though. For one thing, our neurotypical children are learning to become the most empathetic, understanding little souls you'll ever meet. They are used to dealing with different. Different is their normal. So, they're not afraid of it when they meet it out in the world at large and they don't judge it and they counsel others not to be afraid or judge, either. My friend Shannon has an autistic daughter Rylan's age and an older neurotypical son. She says her son makes sure to include his sister whenever he plays with others and he sticks up for her when others are picking on her, "It's been a great way for him to learn that not everyone is the same and that's not always a bad thing."

I have a dear friend who has two daughters. The older is autistic and Rylan's age and the younger is neurotypical and a bit younger than Pippa. Her older daughter is verbal but often not able to express what she wants or needs. My friend says her younger daughter has started to anticipate her sister's needs. For example, she'll lead my friend to the kitchen and ask for a cookie and then ask for another one for her sister (and actually take it to her, which is crazy impressive for a 2 yr. old, Peej would probably just pocket the second one). Another time, her older daughter was upset about trying on some clothes, and after a long time they finally figured out she wanted some privacy. Her sister led her into another room and handed her the clothing so she could change in private. This kid is 2. It is absolutely nutty what our 2 year olds can learn from having a sibling with special needs and trouble communicating.

When Rylan does something naughty and I scold him, he gets a slightly panicked look on his face. Pippa observed this the other night and said, "Mommy, RyRy says he's sorry." He smiled. She was right.

The other beautiful thing about the autistic-neurotypical sibling relationship is that no matter the obstacles, no matter the differences in abilities and interests, they always find each other. Angel says, of her boys, "If they have nothing else in common, they will always come together to play video games." I have noticed the same ability in my kiddos to find the common ground. They will watch "Frozen" together and they both love the songs. Pippa belts it out with Idina Menzel while Ry sits quietly smiling and making intricate shapes with his hands, but they are enjoying it together. They like to be in the same room together even if they are playing with separate things. Pippa follows Ry from room to room and if they get separated, Ry whines and grunts until someone comes and finds him.

I have said before that I am grateful for the experience of parenting Rylan, but I am equally grateful for the experience of parenting him and Pippa together with Dylan. I am grateful for this family with autism. All four of us are working hard to learn each other's languages, to respect each other's needs and to be kind to one another. If we have mutual understanding, respect and kindness then I think we'll manage all that tricky stuff just fine.

We may, however, never manage to get another picture of the two of them at the same time. So I'm relishing this shot from last Halloween.

I Drank the Kool-Aid (Okay It Was Gatorade).

So for the maybe 3 of you who aren't Facebook friends with me and thus haven't been subjected to my barrage of gushing endorphin-fueled posts on the subject (or who haven't seen me in person or who weren't the proud recipients of multiple moderately tipsy texts and phone calls on Sunday) I ran my first half marathon on Sunday in my hometown with both of my parents.

It was aaaaaaawesome and I'm totally doing it again as soon as I can move at any level above a zombie shuffle. However, I could write about 300 pages worth of overenthusiastic nonsense that none but the most obsessed of runners would actually take the time to read, so I've condensed my experience into two sections: Amusing Anecdotes/Helpful Tips and Inspirational Bullshit I Can Call To Mind Next Time I'm Trying to Hit an 8-Minute Mile Pace in Pouring Rain and Wondering Why the Hell I Do This to Myself (okay so that title needs some work...).

Amusing Anecdotes/Helpful Tips:

1. If you're running a flat race, train on hills. The Modesto Half course is completely flat with the exception of "Mt. Modesto" (AKA the Briggsmore overpass) and it was, well, extremely validating to blow past all the flatlanders struggling up the great man-made mountain.

2. If you have trained on hills and managed your best 13.1 on hills in 2:14, and you're running a flat course, don't tell your family to expect you around 2:15, because barring injury or unfortunate unanticipated port-a-potty visits, you will come in much, much faster than that (like, say 2:04:46ish) and the only picture of you finishing will look like this:

Hey look, it's my butt! Note to self: lay off the chocolate...

3. If you're a lady, your period will show up a week late just so it can cheer you on while you run your race. Accept this. Pack chocolate.

4. If you're running your first half marathon in your hometown with both of your parents, one of whom had major neck surgery last year, and you never thought you'd be a runner and you've struggled with injury and chronic illness to get to this point, and you're hormonally ridiculous because of aforementioned delayed lady days, for the love of God don't put Arcade Fire's "The Suburbs" on your running mix, because "We Used to Wait" will come on at mile 8 and you will start to cry. And then you will start to hyperventilate. And wheeze. And you'll have to walk for a bit while you collect yourself. And you'll keep looking at your watch yelling aloud between sobs, "Stop crying, Megan! You're at a 9 minute mile and you're ruining it!" And then other runners will be afraid.

5. At aid stations, if you have your earbuds in and can't hear what the volunteers are saying, LOOK IN THE CUP before you splash the liquid all over your face. Because it might not be the refreshing cool water you were hoping for but rather some sort of viscous pink energy drink that will dry in a sticky, sugary crust over the salty, sweaty crust all over your face and make you want to claw your skin off.

6. This is more anecdot-y but so, my dad ran a half in 2:05 last year and my previous PR was 2:14, right? So I expected him to be ahead of me. We got parted at the starting line, but I thought I saw him right as we got to "Mt. Modesto". I sprinted ahead of the group I'd been running with, dodging several tutu-clad ladies (Why. Just...why?), turning my ankle in a pot hole and accidentally bumping into this dude who, I swear to God, looked just like a gorilla, only to discover just as I was about to tap my "dad" on the shoulder that my dad was not my dad at all, but rather a tall, thin woman with hair roughly the same length who was wearing a similarly-colored shirt and hat. Whoops.

And now for the Inspirational Bullshit:

1. Watching a chick just a year younger than me beat every dude in the field in the marathon. Bad. Ass. I was standing a few feet from the finish line when she ran in and it was damn impressive. Made me actually consider running a marathon...someday...

Courtesy of Modesto Bee: my new hero

2. Running my first race in front of my baby, who was very patient and excited and said she wants to "run a long way down by the river" now, too. Good. Maybe she won't be 30 when she runs her first half.

That's the face of a warrior right there. Boston Marathon winner 2033, perhaps?

3. My mom. This was her 3rd half marathon and she says it's her last so I was unbelievably grateful to get to run it with her. She has degenerative disc disease and had a bunch of her cervical vertebrae fused together last year and a titanium plate put in. The crazy woman was doing incline walking on the treadmill just a few weeks later. Training for this half did not go as she had hoped. She has another bulging disc in her neck and was plagued by pain, muscle spasms and weakness in her arm so her longest training run was only an 8 miler I think. But this lady does NOT give up.

I finished in 2:04:46, my dad who had a bad day with cramps and other issues (and is also a friggin' inspiration, btw, since he needs knee replacement surgery at some point in the future but keeps on truckin') came in at 2:19. I cooled down a bit, drank some chocolate milk, hugged my baby, watched the badass Anna Bretan win the marathon, and then went back to the 13 mile marker to wait for my mama. She was hoping to finish in 3 hrs. and was expecting to have to walk a lot, so I was surprised to see her rounding the corner around 2:50 at a nice jog. I fell in with her and ran up to the finish. She was focused and determined and a very un-bullshitty version of inspirational. She finished in 2:52 and later revealed she had waited in line for a port-a-potty for 8 minutes around mile 11 (behind some dick spectators who were holding places for other runners, by the way, jerk move, spectators) so if you subtract that time she came in even faster than her last half! Friggin' awesome.

Badass mother runner

All-in-all, it was a great experience. Around mile 10 I felt like I was going to faint, puke, die, or all 3 and I said to myself, "NEVER again"...and now I'm looking up local races in the fall and contemplating the Napa half next spring...I definitely drank the Gatorade.

I think our priorities at this point were (from left to right): Nap. Bath. Mimosas.

Eulogy for Empress Tobi, Mistress of Evil

Today I have to say goodbye to my first kitty, Tobi AKA Tobo P. Lobo Cat Princess Extraordinaire AKA Empress Tobi, Mistress of Evil AKA the best damn cat in the history of cats.

Tobi entered my life on September, 20 1997. She was a gift for my 14th birthday. My parents claim they bought her at Petsmart but I'm pretty sure they pulled her directly from the mouth of Hell.

Yes, yes, look into my eyes Hu-Man. I shall be your Master.

She showed no signs of her inherent evilness for the first few months of our cohabitation. In fact, she slept roughly 23 hours a day and spent the remaining hour staring at me without blinking. At the time I thought this was normal behavior for a 4 1/2 month old kitten. Now, having lived with two other kittens, I know she was just storing up energy for future demonic activity.

That's right, just keep putting scrunchies on my tail. It's all fuel for the fire, Hu-Man.

Now it may seem harsh to call a beloved pet demonic, but, well, for example, as I was writing this eulogy, this poor, shaky, senile skeleton of a cat who hasn't moved in hours and can barely stand got up, limped over to my dresser, hopped in my underwear drawer and peed. That's Tobi.

During my teen years, Tobi became my extremely reluctant sidekick. I spent long hours reading in my room while petting her (in order to accomplish this I had to hold her down with one arm, pet with the other and turn pages with my nose, but those were precious times...really). I took her downstairs to watch TV with me (in order to accomplish this I had to hold her firmly in my lap with both arms and change channels with my nose, but again, precious times). She saw me through every break-up I've ever had by staring me in the face and saying (I swear), "Stop that infernal noise, melodramatic girl-child and go get me some more food."

Precious times.

When I went off to college, I couldn't bring her with me to the dorms so I left her in the care of my then-10-year-old sister, Adrienne, a fanatic animal-lover. Tobi, though displeased in my presence, was even more displeased by my absence and took to peeing on, well, everything. I think she was single-pawedly responsible for Adrienne's temporary defection from the ranks of animal fans (she has since returned whole-heartedly and now works at a doggy day care). Here is a poem Adrienne sent me during that time:

Can you feel the love?

During the summer after my freshman year of college, I worked at a movie theater in the hopes of saving up enough to pay a pet deposit at my new apartment so I could take Tobi back to school with me in the fall. Much to Adrienne's relief, I did manage this and moved Tobi into my first apartment at Aggie Square with me when I went back to Davis in September. She was very excited.

See the excitement?

Tobi wasn't necessarily any more evil in Davis than she was in Modesto, but she wasn't less evil, either. I remember an occasion when she went to my roommate, Dara's door whining like she wanted something. Dara bent down and said, "What's wrong, Tobi?" and Tobi promptly grabbed Dara's head between her paws, bit her and ran away.

Stalking the halls at Aggie Square, looking for heads to bite

About the only thing Tobi did like in Davis was my then-boyfriend Dylan. She loved Dylan. She ran to the door when he came over and flopped in front of him, exposing her soft white belly. She jumped up on his lap every time he sat down. She wove between his legs when he walked across the room. In any other case, I would probably have been relieved that my pet took to my boyfriend so easily. However, since the pet in question was the soul of evil birthed in the very heart of Hell, it gave me pause. Eventually, though, I figured out that she wasn't so much applauding a corresponding evil in Dylan's soul as she was trying to piss me off by flirting with my boyfriend.

Tobi had her first encounter with another cat when Dara moved out and Hannah moved in. Hannah brought with her William, an unusually long and cheery cat who attempted to make friends with Tobi time and again and time and again was met with violence of an unwarranted viciousness for his pains. Tobi also seemed to blame me for this addition to the family and began pooping on my bed any time I went home for the weekend in revenge for leaving her with William the sweetheart.

Precious times.

When Dylan and I graduated and got married, we moved to our own 1 bedroom apartment where Tobi ruled as Empress Supreme. The space was a bit smaller than she would have liked but overall she was pleased, except when I turned her out of her (not my) bucket chair to vacuum it.

New American Gothic

Tobi's life was pretty great...until 2006 when, during a wave of baby fever which it was too early to satisfy with a child, we purchased Sasami, a 2 month old female kitten and Tobi's new arch-nemesis. Tobi spent roughly the next 12 months hiding under a shelf in our storage closet while Sasami the giddy dingbat from a place definitely northwards of Hell, spent her days zipping around the apartment seeing how many things she could knock over that day and then crashing in my lap for snuggly afternoon naps.

Life pretty much just kept getting worse as far as Tobi was concerned after that. Dylan was accepted to several PhD programs and chose to attend UT Knoxville, which meant a move across the country. We packed up our tiny apartment and our 2 cats, gecko, aquatic turtle, tortoise, frogs and hamster and drove 2500 miles to our first house. The vet gave us some pills that she assured us would calm our kitties and make the ride a peaceful one. As soon as we packed the cats into the car, Tobi started whining. By the time we hit Sacramento, she was at a full-on yowl. Somewhere past Reno she took a stinky protest shit, completely ignoring the tiny litterbox we wedged into the crate and instead dumping it on poor Sasami's side of the crate. We stopped at a casino/truck stop in Lovelock, Nevada and cleaned things up as best we could, but we had to make Salt Lake City that night so we pressed on, a reeking carful of caterwauling and woe.

We did eventually make it to Knoxville and after a month or two, Tobi adjusted...and then...in wave of baby fever #2, we brought home Alice the Scurvy Sea Dog, an effervescent and incurably curious Welsh Corgi. Tobi had had dealings with dogs before as when I lived at home we had a Golden Retriever named Jesse and a yellow lab named Josey, so though she was not amused by Alice's arrival she did know how to handle herself. Upon their first meeting, Tobi reared up, hissed and treated Alice to a volley of battering cat fists and Alice retreated, terrified, but her place in the pack firmly established. Alpha - Tobi. Beta - Alice. Omega - Sasami.

After the inexplicable addition of Dog, we then had the nerve to add something even worse to the pack: Baby. Rylan was born October 9, 2008 when Tobi was 11. I expected Tobi to be grouchy and tried to keep her away from Rylan for a few weeks, but we were actually in for a monumental surprise. At their first real meeting, Tobi hopped up onto the couch, gravely sniffed his face with an air of suspicion and then immediately relaxed. She sat down next to him and began to purr. I stayed in full red-alert mode for a good 5 minutes sure it was some evil ploy of hers to lure me into a false sense of security and then pounce and bite out my baby's eyes, but that was it. She went to sleep.

Over the next several months, Tobi stuck by Rylan. She always seemed to be nearby when he was playing on the floor - not too close, but not hiding under the bed, either.

Every breath you take...

She also tolerated all the fur-pulling and ear-grabbing and belly-nuzzling he could throw her way (this is a cat who used to bite people for looking at her), until he turned 2. Shortly after his second birthday, Rylan ran over to Tobi and began drumming on her belly with his tiny hands. She turned, looked at him, growled and popped him in the face with her paw. After we had Pippa in 2011, she was granted a similar grace period and taught a similar lesson around the age of 2. I can only conclude that Tobi saw them as kittens for the first couple of years and tolerated their nonsense and then decided, in her infinite wisdom, when it was time for them to grow up and keep their hands to themselves.

Tobi and Rylan continued to have a special bond, though. I've always felt that she knew he was different, that she knew things were harder for him and he was sick often. Maybe it was just that he doesn't speak and so all that human language garbage doesn't get in the way of their connection. Whatever the reason, she continued to be his cantankerous shadow until the day last month when she could no longer climb the stairs to his room. She was particularly tender towards him during seizure cycles and would keep watch with us while he slept.

Thanks for looking after my baby, Old Lady

Last summer we moved the family to Clemson after Dylan got the professor gig. The trip wasn't quite as eventful as the last move had been, though she did engage in more smelly protest pooping and a fair bit of yowling. She seemed pretty happy in this house. It's over twice the size of our Knoxville house with plenty of crannies for an old cat to hide in.

A few months ago we noticed she was sleeping a lot. She seemed stiff and in a bit of pain when she walked. She seemed to care less when people touched her, which was truly worrisome given her previously crotchety nature. Then, in early January she and Sami both came down with a stomach bug. Sami got better. Tobi didn't. After a couple of weeks it became clear that it wasn't a stomach bug. She was losing weight. She, who we used to make up fatty cat songs about, wouldn't eat. She slept in Dylan's closet all day. We took her back to the vet. Colon cancer.

I know she's nearly 17 years old but I was completely shocked. I really didn't think she would ever just get sick and die. I was sure her pure evil would sustain her until the age of 22 when she would look at me, cackle one last time and vanish in a puff of smoke. I knew we had to let her go. She can't make it to the litter box. I have to hold her head up to help her drink. I know. It's time.
And yet, I'm engulfed in the most mystifying sadness. True, this cat never really liked me, or so it seemed, but she's been my companion since before I could drive. Looking through these pictures I have of her...there's my 8th grade class photo on the wall in the first one...one of the Emily books I must have read 100 times as a teen...the first carpet I ever had to vacuum...my husband looking about 12 years old...my baby before we knew how hard and blessed his life was going to be...she's been there for all of it.

When I was in 11th grade, my English teacher came to class one day with red eyes. Her pet had died. She passed out copies of Dylan Thomas' "Do Not Go Gentle Into That Good Night". I thought it was a strange overreaction to the death of an animal. I don't think it's strange anymore.

Rage, rage against the dying of the light.
Tobi
May 24, 1997 - February 3, 2014