Blue Lights

Two weeks ago J and W were in the middle of DSW, patiently waiting for me to decide between five different variations of the same white sneaker.

I walked down the aisle going back and forth between the shoes on display, while the kids dragged their feet behind me.

“It’s lunchtime mom, I’m hungry,” said J. It was actually way past lunch time. It was 2 in the afternoon. I knew he was anxious, but I knew I still had probably 15-20 minutes until we were in the pre-meltdown zone. The kids had a snack before we left, which was how we gotten to this point, but J has ideas about lunch and what it should look like—a steaming hot blue box of Kraft macaroni and cheese in a bowl with Parmesan cheese on top. I didn’t have this flexibility to push lunch until 2 pm two or three years ago. Two or three years ago, lunch time was at 11:40, no matter where you were. The world stopped at 11:40, and if you didn’t have that mac n cheese in front of J, you’d have an epic meltdown.

“Why don’t you just choose one?” W asked, clearly done with the whole ordeal. But I couldn’t, because I’m the type of person that takes forever to make a decision. Having five options doesn’t help the situation at all.

At one point I considered these grey ones, but then went back to determine which white shoe to get. By Monday I had made my decision and went back to get some white Keds–without my kids.

The store was packed. It was a holiday weekend. Holiday weekends in Fargo mean Canadians come down to shop too. Mix that up with all the moms who take their kids shopping because they have to entertain their kids on a day off, and shopping can be a nightmare. My kids weren’t the only ones having a miserable time.

J had resigned himself to sitting on one of those little stools—the ones with the slanted mirrors designed to let you look at your feet—and W had convinced me to let her have the phone (when I got home, I discovered that there was a photo booth’s worth of selfies on my phone).

Then, four or five aisles down—close to the men’s section, we hear this really loud, obnoxious, snappy, “Mom, Mo-om, MOM!”

I didn’t look over to see who was yelling for mom—but it sounded like a teenage girl. At first, it sounded like a rude teenage girl, trying to boss around her mom, but as she kept calling for “mom” it seemed her behavior could be because of other things. It was as if she didn’t realize she was being that loud. Maybe she had autism, Down’s syndrome, or some other developmental delay. Maybe she was just a rude teen. It didn’t matter. Both mom and daughter seemed to be having a hard moment. It happens to the best of us.

My kids didn’t flinch. J was kicking the stool absent mindedly, W was zombied-out with my phone. But there were two other ladies, in their forties, in the aisle with me, and it bothered them. But they didn’t go over to help the girl. They just started to giggle and then squawked, “Mom, Mo-om, MOM!” to each other.

I hate to admit this, but I didn’t do anything. I wanted to say something to those ladies but I didn’t. J laughs at things when he isn’t comfortable, so I get it. But these women were older. And I’m guessing more socially savvy than my autistic son. After a minute or two, we didn’t hear anything from the teenage girl a few aisles down. My kids were at their breaking point with the shopping trip, and I decided to leave before we had a loud outburst of our own. I still hadn’t made a decision on shoes.

On the car ride home I had a million questions (and lots of guilt) running through my head. What should I have done? Do you say something to women just a few years older than you when they’re being inappropriate? I know there are social rules about correcting someone older then you. Do you say something when it’s not your kid or your business? Maybe I was making the whole thing up, my reasons for the teen’s behavior, maybe it was just a really rude girl talking to her mother. But still, squawking and laughing is inappropriate. I’m guessing “MOM!” was having a hard time no matter what the circumstances were. I should have said something. When J was in the full fledge autism toddler stage, always in a tantrum puddle on the floor in some public place, and the rude older ladies would inform me of all the wrong things I was doing as a parent, all I wanted was someone to say something. I wished someone would have stuck up for me.

This first week of April ushers in Autism Awareness month, and with Autism Awareness month comes all sorts of things. The lists of autism symptoms, the statistics, and autism stories will be all over the internet. You may see buildings downtown “lighting it up blue” to show support and awareness. Yes, it’s important to be aware of autism, its symptoms, especially if your child or a child you know seems to be on the spectrum. Yes it’s important to know about autism so that you can interact with and help those on the spectrum. Those things do help. But as a mother of an autistic child, the thing I’d love the most would be an increase in kindness. You don’t have to know anything about autism in order to be kind.

We’ve had a blue light on our porch since mid-February, not for autism, but because people around us in our community have been struggling for very different reasons. The whole city of Fargo has had a blue light porch vigil to show support for an officer shot and killed in the line of duty. The community wanted to show support for his family and his fellow officers. People wanted to help. It’s now April and the blue lights are still sprinkled everywhere around the city. It’s been absolutely amazing to see the ways people of have reached out with kindness in ways beyond the blue lights.

Blue lights. Blue lights for officers and blue lights for autism. Two very different reasons. Blue lights for me now are a reminder that we need to be kind, gentle, and supportive. People hurt at different times for different reasons. It reminds me how fragile we humans really are. We need to be there for each other.

We don’t need rude laughter, we don’t need squawking. No matter what the nature of the hard thing is we’re going through.

I’ll never know that mom and daughter’s story. It doesn’t matter. I don’t have to. It’s not my place to judge or make assumptions. Next time I have a DSW moment though, I think I know what I’ll say. Next time I’ll open my mouth and say, “let’s be kind.”

At least, that’s, what I hope, I’ll have the courage to say.

Full Catastrophe Living

Me back in the glory days–not really the glory days. I wasn’t really a fast runner at all. This is my picture of XC. I don’t know if it will ever match up with J’s picture of XC

The turn of events this week are all because of one teeny tiny mistake. I thought J would picture this week in the exact same way as I pictured this week. I do this sometimes. I remove me and J from the world for a little bit, we work hard on hard things together, and then I expect us to end up at some better place I’ve created in my mind. I’m not shooting for the stars or anything. Just a small, positive change. One step forward instead of three steps back. That’s all. No Disney inspirational movie making plot here. I’m just looking for baby step progress.

This is how I saw this week and the events leading up to it:

We run all winter. We master the mental and physical hoops that come with running in below freezing temperatures. Track season starts. J runs with the group without complaining—with that new mental capacity we’ve been practicing the last five months. He stays close enough to the group, maybe a block, or block and a half behind. Last of the pack, that’s what I’m anticipating. But not too far behind. Not four or five blocks behind like XC season. That’s how I saw track happening. Like I said. I wasn’t expecting anything much or outrageous.

This is how J saw this week :

Just like XC. Same routes, same friends, same coaches. Because that’s what I told him it would be like. “Track is just like XC, J” I had told him over and over again for the last 5 months. “You’re going to love it.”

And that’s where I made my mistake. J took me literally. He thought track would be the literal version of XC reincarnated.

And boom. Worlds collided. His expectations vs my expectations and you have full on catastrophe.

That’s what started Monday’s troubles.

Monday I get a call from one of J’s paras around 2 in the afternoon, letting me know that the first track practice will be held in the cafeteria after school (because of weather) and so we could discuss where I could meet up with them. “Oh,” I said. “We should probably let J know then. I think he’s expecting to start practice up at the high school.”

J’s para text a few minutes later:

“I told j that track will be in the cafeteria today and he did not like that idea.”

No, he did not like that idea at all. When I came to meet him after school, he came out with his track bag over his shoulder, fully dressed in the clothes I sent him to school with.

“He had a little meltdown—not a big one where I had to call the principal—but he said he didn’t want to go to track today. He says that he doesn’t want to go to the cafeteria for track.”

On the way home, J was all tears when I asked him about why he didn’t want to go. I had my suspicions. In J’s brain kids shouldn’t be running in the cafeteria—or the halls of the school—which was where they were going to practice sprints. In J’s brain, that’s not what track looked like. Track was going to be just like XC. Running for a long time. At the high school. Outside. With friends. Just like I had promised.

“How do you feel?” he asked mid-mini-meltdown in the back seat.

“Sad. Disappointed,” I said. “I thought you wanted to run track.”

When we pulled into the driveway, J suddenly stopped crying. “I want to go back,” he said determined. “I WANT to go back.”

J changed quickly and we rushed back to the school. He joined the track team in the cafeteria. I watched him as he fully participated with his uncoordinated body, arms and legs flopping all over the place as he tried the lunges and skips and jumps and other form drills with dozens of other kids in the tiny cafeteria. He also waited patiently for all the boys to run sprints on the 3^rd floor hallway.

“J, I’m so proud of you,” I said on the second drive home. “Isn’t track great?”

“Yes! I’m going to do it again tomorrow.”

“Wow,” I thought. “We’ve done it! J got over the changes. He’s adjusted his expectations. It was just a little glitch, but now we’re good.

And then Tuesday happened.

Around two in the afternoon I got another call. J had another meltdown and this time principals were involved. I have to say, sometimes when I get called in, it feels like I’m the specialist called into a crime scene—like Sherlock Holmes, the person who finds the clues that no one else sees and has to figure out what the heck just happened. We get J calmed down and settled, and we try to figure out what happened. They tell me J started obsessing and stressing out about numbers, and words, and spellings (all symptoms of his anxiety) and then it just escalated from there. But the thing that sticks out to me the most is the phrase J keeps saying over and over in the room, “I don’t want to stay after school.”

And that’s when my best educated guess clicked—I say educated guess because by this point, I know I will never truly understand the reasoning and logic that happens in J’s brain.

“I think he’s stressed out about track,” I said. “He had a mini meltdown after school about it yesterday, but we went back and he ended up being okay. But maybe he’s not okay. I mean, it’s not what he’s expecting—running in the school, for one thing.”

And then I remembered something else.

“In elementary school, if J had a bad behavior day, he had to stay after school—like detention. I think he’s equating staying inside the school, after school, with detention, even if it’s for track.”

J came home early with me. He missed track. As I drove W to piano lessons, we passed the long distance track team running. Outside. I was all tears. Because J has taken 4 minutes off of his mile time over the winter. 4 whole minutes. And because of his anxiety—the most disabling part of his autism diagnosis, he wouldn’t be able to run track. I started questioning if XC was going to be a reality in the fall. We came home and I made a T chart comparing XC and Track for J. J wrote down his “new picture of track looked like.” I explained to him that staying after school for track was not detention and that we didn’t do detentions anymore. And then I was done parenting for the day.

I asked Steve to do all the homework with him that night. I made dinner and read a chapter of The Roundhouse. Steve and I watched Netflix the rest of the night.

And then came Wednesday

By Wednesday, I had no expectations for anything. J saw the kids on Tuesday and said he really, really wanted to try track again. The paras and I texted back and forth that day about it. They said J was excited to do it. I met him after school. J’s special ed teacher (who is also one of the track coaches) let me know that the middle school long distance team would be meeting at the high school (not because of J, just because that was the plan) and so J and I met the team at the high school. And J ran with the boys/girls high schoolers and middle schoolers, straggling about a block behind the last girl runner. This is what I was thinking track would be like. It was a good day.

Thursday practice looked much like Wednesday’s, except the boys and girls middle schoolers ran their own route. J was able to keep up with at least one other runner at all times during the run (which is a huge relief for me, having a buddy who can also be aware when crossing streets). He even finished his run with the first finishing girl.

I look back at this week and I think, “Wow, that’s not how I expected this week to go at all—after Monday. Especially after Tuesday.”

We celebrated making through the week at Sandy’s donuts. Because you have to celebrate the little things.

I think that’s what keeps me going. It’s what keeps me from giving up altogether with J. Knowing every day will be so much different than the day before. It’s so unpredictable, that even after a bad day I can’t guarantee that the next day will be bad. Living with J is truly full catastrophe living.

Jon Kabat-Zinn once said that “the nature of the human condition [is] to actually, at times, encounter uncertainty, stress, pain, loss, grief, sadness and also a tremendous potential for joy, connection, love, affiliation.  And all of that is ‘the full catastrophe.’  It’s not just the bad stuff.  It’s everything.  And the question is, “Can we love it, can we live inside of it in ways that actually enliven us and allow us to be fully human?”

That, says Jon Kabat-Zinn, is what full catastrophe living is. And I think that’s the perfect definition of this whole parenting business.

Negotiating Space

I have a world map and a map of the US folded and stacked on top of my jeans in my closet. J’s framed Imagine Dragons poster is also in our room, leaned up against the foot of our bed. They’ll be there until Tuesday, fingers crossed, until J earns the right to have them back.

Right now when I get dressed or go to bed, I have these visual reminders of how much space J can take up in my life. It’s easy to let J overtake every aspect of my life. Space is something I have to fight for. It doesn’t just happen.

I got married young (just shy of 21). I had J less than a week before turning 22. J and autism have been my entire adult life. Maybe that’s why I fight so hard to make sure I have my space without him.

Steve and I both graduated in 2002 with our BAs. I was 7 months pregnant at the time.

It’s easy to become an autism martyr. It’s easy for autism to creep into every thought you have. It’s an easy go-to place to wallow in when you feel like your life’s not going the way you want it to. That’s why it’s so important that I fight for my space, because it’s the only thing that keeps me sane through this whole thing. I still have my life to live.

I was “me” before Steve, J, or W. I’m still that person (yes, evolved a million times over from the experiences I’ve had over the past 15 years married with kids) and I’m always trying to make sure I learn and improve on that person too. It’s important to my family, I feel especially to my daughter. She needs to feel the right to develop herself in the ways she needs to as well–unlike me, her life started with autism. Even though I love my children, I’m not just their mother. I am so many other things too. It’s dangerous to get stuck into seeing yourself as one thing, especially a mother of an autistic child, because you can’t see the myriad other things you are too.

Once W was born, I stopped subbing altogether. My time and my space had to be put on hiatus for a few years.

It’s hard to say if I’d feel the same way or not if J didn’t have autism, although I’m guessing I probably would. I’ve needed that “me” time before we knew J had autism. We were a poor grad school family when Steve was attending the University of Illinois and I substitute taught in the Urbana school district every Friday, while pregnant with W. The extra money was nice, but getting out of the house once a week, being an adult “me” was worth much more than the money. Raising another human is an especially exhausting, all-consuming experience. I had to step out of that, even for a short amount of time, on a regular basis.

Pregnant with W and subbing at the same time. We didn’t have a ton of money at the time and I had about 2 or 3 “nicer” maternity shirts that I rotated through when I subbed. This shirt was one of them.

When W started kindergarten, I really felt I needed to go back to school again. With a lot of Steve’s support (he took a sabbatical during some of that time so I could TA and go to school full time) I was able to graduate with my MFA. I had gone back and forth between speech therapy (or some other education emphasis) and an MFA. Speech therapy (and even education) required that I go back and take more undergraduate classes before a masters program. My life track before marriage and kids was in English, so the MFA won out. A few weeks into the program I realized how important it really was that I develop “me” in other ways than in the special needs department and that I was really starving to develop my own interests.

MFA graduation, 2012. My sister and Steve were some of my biggest supports through the whole process.

Over the years I’ve realized that in all the ways I fought for my space, I’ve ended up reciprocating them back to J and my family. My experiences in the Urbana Public School District helped me understand the special education process better, even when I didn’t have a stake yet in special education. I could see teacher’s perspectives and how challenging their jobs could be. I’ve been able to see hundreds of kids with different backgrounds, different learning challenges, and different learning strengths that have helped me understand my kids better.

My MFA experiences have been invaluable too. I use one of my favorite reading comprehension strategies taught in my TA class with J on a daily basis. Understanding the human experience and exploring human motivation has helped me imagine a little better what J’s world probably looks like. My creative nonfiction class changed my whole perspective on what reality means to each person, and how even two people sharing the same experience will tell their stories in very different ways because of how they interpret the world around them. Creating fictional stories outside of my experience helps me understand others better and has helped lessen the pain of well-meaning, yet hurtful comments I’ve received. It’s helped me escape my life in healthy ways when I need to the most.

I try my best to read my family’s cues to make sure there’s a balance. Sometimes you get stuck temporarily and a balance can’t be reached, and things are just hard for a while. Even though both my kids were in school, I know the last few months of my MFA were hard on W. I spent many late nights on thesis revisions, I’d grade papers after school or cram reading assignments in while my kids played outside. I’d set dinner out for the family, or Steve would make something, and I’d head out for night classes and workshops. It was something everyone in our family had to make adjustments for. Right now our family is changing again. J needs special attention sometimes with the ups and downs of middle school, and W has her own share of challenges too. Sometimes I have to put off my own projects temporarily for them. But it’s okay, because we all have the right to be needy sometimes. There’s a lot of give and take that happens here.

I know every family, every relationship, requires negotiation of space. It’s a dance that needs to be monitored constantly. Sometimes I’m better at managing that dance than others. Sometimes I play the autism martyr supermom and forget to take care of myself and sometimes I play the selfish, self-pitying mom and forget that sometimes I need to wait my turn too–family issues function on a triage system. I think the most helpful revelation for me through all of this is that our family is made up of constant, fluid seasons of need. Everyone in our family should have a turn to have their needs met, especially when autism is constantly monopolizing that space.

 

 

And Then Came Fred

 

Fred Beck

Steve and I never planned on getting a dog. 13 years of marriage and it never came up once, that is until January of 2014. W had gotten a fish tank for Christmas and within a week and a half and three trips to Petco (and PetSmart) we went through five guppies.

Five.

It was really painful to watch, with W tearfully questioning what she’d done wrong and why they had to “just keep dying.” She’d run to her bedroom everyday as soon as she got home to see if her fish had died while she was at school. Then, while sitting on the edge of W’s bed with an arm full of laundry, I watched the last guppy as it desperately fought dropsy and thought, This one’s a goner too.

And now we’ll have to get a dog.

Even though Steve and I never talked about it, the thought of getting a dog had crossed my mind before. I didn’t want a dog at all. I liked my house. We had finally started to recover from the grad school poverty days and had slowly accumulated “nice things.” I was thinking of all the other problems with dog ownership. The obedience classes. The potty training. Raising two kids is hard enough. I didn’t want that all over again. But every once in a while I had this nagging thought that the kids needed a dog. Even if I could convince Steve it might be a good idea, I couldn’t see it working for one big reason.

J was absolutely terrified of dogs.

So terrified that J’s anxiety around them made him dangerous. He would drop all of his things on the way to school, cover his ears, and run across the street without looking if he heard a dog bark or even saw one calmly coming towards him a block away. If we happened to get close enough to a dog, and the dog jumped or barked at all, J would scream and fight out of our arms to run away–making him all the more dangerous around an excited dog. He couldn’t even go trick-or-treating without screaming or crying because almost every other house in our neighbourhood had a dog. He hated going outside in the summer to ride his bike or ride his scooter because somewhere there might be a dog in someone’s back yard. He had even catalogued in his brain which houses had dogs.

I did some research about autism and dogs when the guppies started dying. There was a ton of anecdotal evidence of autistic children benefiting from dogs, but I couldn’t find any hard evidence supporting this. I did find one study at the time that dogs can benefit kids on the spectrum if introduced after the age of five. I watched videos of therapy dogs working with autistic children. In one video, after a year of daily therapy, a little boy with dog anxiety was able to pet a dog.

We weren’t going to spend thousands of dollars on a service dog, and I didn’t want to put up with a year’s work of very stressful conditioning in order for J to be okay with dogs. We were struggling with a load of other anxiety issues. I couldn’t do that.

Finally, we decided that we would try the humane society. With a two week trial we could see if we could really commit to a dog and see how J would react to it. If it didn’t work then we’d just give the dog back. We explained to the humane society the situation (that our son had autism and that there was a very good possibility we would be returning the dog). They were happy to help us, and said they had two senior dogs (Fred and Rupert) that met our requirements of 1) house trained 2) no barking 3) no jumping on furniture. We decided to give Fred a go.

Fred’s online posting from the Humane Society. 

We found out that Fred was with a foster family. All the noise and chaos of the kennel made him anxious (sound like someone else?). The foster family brought Fred over to our house (and kept him on a leash), and all of us stood in the front entrance huddled around Fred–except for J. J sat on the couch on the opposite side of the room, covering his ears, saying he didn’t like the dog and he wanted the dog to leave now.

The family said good-bye (trying not to choke up–they really liked him too and later we found out that they were considering to adopt him if we didn’t) and it was the four of us and Fred. J was still stressed, but eventually got off the couch. And we eventually convinced him to pet the dog (still on the leash–J insisted it stay on the whole time). The kids went to bed later that night, and the only way we could convince J to go to bed was to promise to give the dog back the next day. But I knew J. I saw how he was able to slink off the couch and pet him. I just had a feeling that it might work.

The next morning J woke up and said, “where’s Fred?” not because he wanted to make sure he was gone, but because something happened over night that made him okay with it. He was excited to see Fred.

I’m not going to say that two week trial was easy. It was awful–not because of the kids, the kids adapted just fine, but it was hard on Steve and me. I’d call my parents or sister and cry saying, “what have we done?” Fred had separation anxiety issues. He’d have accidents if we left him alone at home. Finally we learned that kenneling him while we were out would be a good option. Except that he hated the kennel too. It was a huge learning curve for me and Steve. I’d never had a dog and so I didn’t know what I was doing. We’d call friends with dogs for tips. We learned that dogs liked to sleep close to their owners and not in the basement by themselves. We ended up taking turns sleeping on the couch by Fred the first few nights because we didn’t know that.

We got so desperate at one point to convince Fred that the kennel was okay that Steve actually crawled in and sat with him. We then found out later that this kennel was WAY too large for him.

It’s been two years this week and I can’t imagine life without Fred. Yes, there are some days when Steve and I say, “why do we have a dog?” when we have to clean up a mess, walk him when it’s -20 out, or try to plan a summer holiday. But we’ve seen how he’s been great for both J and W. Sure Fred’s got his quirks–in fact J and Fred are similar in a lot of ways, but that’s what it means to bring someone into the family. Families are really just a big, beautiful mess. We chose to bring someone into a family but we don’t know what that really means, what the struggles and successes are that come with it. And how that someone will change entirely how you see life. How you all awkwardly and gracefully evolve into each other. I think about this all the time with J–I had no idea for almost two years that the baby I brought home would be so complicated. It’s not how I pictured my life to be like at all. But if you told me a few years ago we would be dog owners, I wouldn’t have pictured that either.

J at his first dog walk, about 100 dogs and he didn’t even flinch.

J and W on the dog walk

Giving Fred a bath

The Truth About Santa

We worked so hard for this picture. It’s funny the things we do as parents.

Back in April, Steve, W, J, and I had a pow-wow in our living room. Steve wasn’t on board with the idea (he’s the one who loves our kids being little and doesn’t want them to grow up). I’m always the one who wants them to grow up (maybe it’s because of J and his delays; I have that extra push for my kids to be on their own and to ‘get things’). I had decided we were going to tell them the truth about the Easter bunny. After all, J was almost done his first year of middle school and W (even though she’s almost a full year younger than other kids in her grade) was headed there in August. I assumed most kids by middle school knew the truth about the Easter bunny, and I didn’t want either of them to feel embarrassed or risk the chance that our kids would be made fun of for still believing.

My track record for trying to explain the mysteries of life hasn’t been great so far. One time, while picking W up afterschool, W asked me what sex was. Totally taken off-guard, and keeping my eyes on the road, I proceeded to explain sex to her. I explained how the anatomical parts (with their proper names) interacted with each other in very basic terms. I checked the rear view mirror a few times to gauge how it was going and it didn’t look like it was going well. She looked horrified. I quickly threw in the intimacy part in there, and how it really is enjoyable (even if it didn’t sound like it) and that it’s a way two people show that they love each other, but I could tell by her face that she didn’t believe me.

I’ve had follow-up conversations with W about sex (mostly to clarify or soften the information bomb I dropped on her). I always think I’m ready to do these things, but then I start talking and then realize I’m not.

That Easter morning, I dropped the Easter bunny bomb. Without any preface, or any softening (because like I said, I’m finding I’m no good at this) I said, “W, J, there’s no such thing as the Easter bunny, right?”

I couldn’t read J’s face at all. W’s face went through all sorts of emotions. First to confusion, more confusion, and then came the soft sobs. And then came the follow up question—the question I wasn’t prepared for. I was already questioning my success in speaking the Easter bunny truth, but you could see the wheels turning and W all of the sudden looked at me.

“So does this mean Santa’s not real too?”

Steve gave me the look of “see, I told you this was a bad idea.” Since I didn’t know or want to answer this one (I could tell I was crushing her heart—if you know W she’s the sweetest, gentlest, most innocent, I-love-my-childhood kid), I decided to stall by asking J.

“J, do you think Santa’s real?”

Without a beat, he said with 100% surety, “No. Santa’s not real.”

Definitely not what I had expected.

J’s not good about talking about himself or expressing his inner thoughts. Understanding his own emotions and thought processes is hard. His answer floored me. I just assumed he still believed because that’s what we told him and he believes and does whatever we ask of him (because all of his life he’s relied on other people to interpret or explain the world to him. He just doesn’t pick up on those things because of his autism). I had made assumptions about his thoughts and feelings without ever asking him—without even trying to get him to understand his own thoughts and feelings. Unfortunately, I hate to admit, I do that a lot.

Now that Christmas is here, I think about how often J has to just comply with things. Believe things we tell him. Buy the rationale we give him. I’m sure he has questions, doubts, concerns, but since he can’t articulate them, he ends up just goes along with it. I think back to the times when he was a toddler, trying to plant him on Santa’s lap for a good picture. One that we could stick in our photo album because at that time, I was already grieving the fact that my child wasn’t like other people’s children and I just wanted to that moment—that picture everyone else had. J wasn’t even interested in toys, at least not in the way other kids were interested in toys (a typical marker of autism). J refused to even wait in line. He had no real interest in Santa at all. Because I wanted to have that normal rite of passage—even a screaming child on Santa’s lap– we worked on it.

I strategized with his preschool teacher how to go about it. We talked about social stories. Finally we were able to get J to wait in a line (even though he was always on the verge of a meltdown) and to sit on his lap and at least say “hello.” It’s silly really—I’m sure he saw right through it the whole time. The stranger in a fake beard. The coming down the chimney business. But he did it, because we told him it was important. Even if he didn’t understand why.

It makes me wonder what else J rolls with just because he knows he’s supposed to but doesn’t buy into at the same time. This whole Santa thing has given me a totally different perspective. I am his mother, and it’s my job to explain the world to him, but I need to remember too how to let him see it in the way he needs to as well so he can carve his own place into it.

We do this all the time. How many other people (autistic or not) have to comply with a world constructed by a majority? Even things that don’t make sense sometimes. I know J sees the double standard when strangers expect him to look them in the eye and engage in small talk—but when we go through the checkout line in the grocery store, he sees that same stranger talking on their cell phone, totally ignoring the cashier—no eye contact at all. Sometimes I think we are all stuck in our little autistic worlds, thinking everyone sees the world the same way we do. The only difference is, we don’t have a bunch of adults reconditioning us to live the norm.

This Christmas season has been different. The kids know about Santa (W did end up forgiving us for lying to her) and their Christmas hasn’t been ruined. In fact, they’re having just as much fun as they always have. I’m not going to lie. Not have to be sneaking around about Santa has been pretty awesome. It’s a hundred times less stressful. The other day J and I saw a Christmas ornament for Fred, and I said we could buy it and put it in his stocking. J was pretty excited for that.

This week the kids have their choir concerts. W has her piano concert. The busyness of the season is here, but even with the countdowns and the disruptive schedules, things that always stress him out, J has told me several times he’s excited for Christmas. He’s starting to figure out Christmas in the way he needs to. And it’s pretty awesome.

Prepping for an IEP

 

J and W at J’s early intervention preschool in Lawrence, Kansas.It’s hard to believe J has had regular IEPs years before this!

J’s IEP is coming up this week.

It’s something I’ve been doing for as long as I can remember.  I have binders full of Assessments, Evaluations, Re-Evaluations, Progress Reports, IFSPs (an IEP for kids under 3), IEPS (an Individual Education Program once a child turns 3),and behavioral  assessments. I even have copies of “my rights” as a parent of a child with disabilities from three different states.

I can’t imagine what it would be like to be a parent without all of these binders. To just send your kids off to school and collect report cards a couple of times a year.

Over the years, I’ve learned some things along the way—things that go past the anatomy of an IEP. There’s plenty of websites out there that explain that like this one here. But I’ve learned some things about the mental/emotional aspect of the IEP meeting. And sometimes that’s a little harder to navigate than the goals and objectives and the construction of the IEP itself.

Here are seven things I’ve learned:

1. Be objective—as objective as you can. I know it’s hard as a parent. You have to leave all your emotional crap at home. If you really have a gut feeling that your child isn’t understanding, doing, learning, something, don’t hide it. Bring it up. The good, bad, and the ugly. Just because your child is struggling, doesn’t mean you’re a bad parent. Be willing to admit that your child is having a hard time keeping up or behaving him/herself. If you’re frustrated with how things are playing out at school, don’t lash out on staff. Look at the current plan and see how you can improve that instead. It sounds very clinical because in some ways it has to be. Doctors can’t let their emotions overcome their thought processes when helping their patients.
2. Make sure to bring up your child’s strengths: I think any parent—those of neurotypical kids as well—can say that their child behaves differently at home than they do at school. Often, with kids on the spectrum they feel more comfortable in their home environment and can show strengths in learning and talents that might not show up at school. Make sure you notify the team of these things. They may not be seeing them.
3. Be an advocate for your child: If you feel like your child isn’t getting the services they need, tell the team. Hopefully you’ve been in constant contact with the team before the IEP (and so your concerns don’t seem like they’re coming way out of left field), but if they still aren’t addressing your concerns, make sure you bring them up and hold your ground. If there is something your child really, really needs, make sure that it’s included in the IEP.
4. Come prepared. Review past IEPs and assesments. Look at the progress reports of past goals. Which goals were the most successful and why? Which goals were the least successful and why? This will help you gauge where the best place/level to challenge your child and encourage the best success. Sometimes goals are too lofty and have to be revisited for the next IEP. Sometimes they’re too easy and they need to be revisited for the next IEP. Sometimes they’re too specific or too general. If you’re receiving services outside of the district, make sure you include any information from those services that might be helpful.
5. Prep the team before you get to the meeting. Write a little summary of what you’ve been seeing at home (both the positive and the negative) and send it out. I find there’s limited time in an IEP meeting and there’s always so much I want to say. If everyone’s read the summary before the meeting, I feel the team knows better where I’m coming from, and hopefully we can be more efficient with our time.
6. Be a good listener. There’s a lot of group dynamics happening in an IEP meeting, and different people have different sets of information/perspective that others in the group don’t have. Try to be fair and make sure you listen to everyone’s voice. It’s really easy for one person (yourself included) to dominate the conversation.
7. Remember that this is one moment in your life and your child’s life. It’s easy to get overwhelmed and feel like you’re drowning on all the things that need to be “fixed.” But every child is constantly evolving. That’s why your parenting strategies become obsolete in a few short months, weeks, or even days after you’ve come up with some brilliant plan, and you have to figure out something new again. As J would say (reciting one of his mindfulness apps), “It isn’t always going to be like this. Thoughts (substitute hard things) come and go like leaves on a river.” Tap into those mindfulness strategies. It will also help you with #1.

As I’ve prepared for this round, I’ve had some new insights through looking at J’s past IEPS. I understand J’s behavior goals will be important to discuss in this next IEP meeting, but I’m also anxious to talk about his academic goals as well. While going through these documents (all the way back to 2005) I’ve noticed that over the years the IEP goals have focused heavily on behaviors (appropriate class behavior, reducing outbursts, and using language to communicate needs). These goals have been on every IEP J has ever had in some shape or form. In fact, on one of J’s eligibility assesments (under “background information”) it states:

“Records indicated he entered school with a tremendous base of concept knowledge and age-appropriate pre-academic readiness skills. J’s weaknesses have consistently been in behavior. His records show IEP goals attempting to increase prosocial interactions with peers and decrease disruptive behavior. J’s previous district stated ‘He displays a high level of stereotypical repetitive behaviors that interfere with his learning’ (November 2007).”

J has been able to “muddle through” academics over the years. He has an incredible memory so math has been historically a strength for him, as well as spelling and grammar. In fact, he came into kindergarten being able to spell at a second grade level, read basic sight words, and new his basic math facts. Over the years, modifications have been made for him in other areas (such as reading comprehension). But now I feel like we’re hitting a turning point. He’s been slipping in the academics category. Now that we’re in middle school he needs to learn how to “take tests.” He needs to learn to study for a test to if he’s going to be able to “muddle through.” Last year he was dismal in these areas, but this year we’ve been seeing glimpses of progress at home. We’re starting to figure out how to get him to “study.” How to get him to work “independently.” Not at grade appropriate levels, but he’s learning the concepts. And I can’t help but think that in the end, knowing how to “do the task” and consequently, eliminate half of the frustration, might improve behavior and attention at the same time. Give him something to encourage prosocial interactions with peers. We’ll see.

I have a love/hate relationship with IEPS. I’m excited to see how J’s grown and at the same time I can get discouraged that he’s always behind in something. That’s why #7 is probably the most important for me personally. I have to remember that Rome wasn’t built in a day.

Math Update:

Steve marked this. The American system of marking makes me smile. In Canada, you put a check beside the correct ones, an “x”by the wrong ones. In the States, you just put a check by the wrong ones. Steve added stars to the correct ones to make J feel good about himself.

The last two weeks we’ve been working on adding and subtracting integers with J. Every day. I decided to suck up all my math phobias and to try to figure out how to get J to learn this. I printed off free worksheets from mathdrills.com. Easy EASY integer problems he could do in his sleep. I wanted to make sure he REALLY knew the rules of integers. After a week and a half, I decided that it was time for J to do the whole sheet on his own. It took him 8 min. Alone in his room. No hovering to tell him to focus and do the next question. No talking through the steps with him. He felt confident (and proud enough) to do them ALL ON HIS OWN—FOR THE FIRST TIME EVER. NOT ONCE DID I REMIND HIM TO SIT BACK DOWN AND DO HIS WORK. He got 22/30 right. 72%. And the next day doing his real integer homework, with larger computations, was SO MUCH EASIER. Because he can do the larger computations without the integer mumbo jumbo. He was doing larger computations in grades two and three, and yet for the past few weeks in school he’d been bombing every worksheet because of the addition of integers rules.  It really confirmed to me that he needs to practice the steps as simply as possible—over and over and over again—he’ll have no problem applying them later.

See? Like I said, they’re constantly evolving!

 

Outwit, Outlast, Outplay: Lessons Learned from this Month

New Jersey’s version of “The Old Man and the Sea”

Apparently toughness runs in my blood. My paternal grandmother and her family lived through some tough times in Belarus. Her family had survived World War I (most of them, my great grandmother buried two children on the side of the road as they fled from the Germans) and somehow made it through the Polish Soviet war afterward before emigrating to Canada in 1926. My maternal grandfather grew up on the Saskatchewan prairie—in the middle of nowhere—in a log homestead where in those winter months of -30C the ice would come through the joints in the wall and he’d have to sleep in every article of clothing he owned to keep from freezing during the Great Depression. His family relied on his ingenuity (as well as the ingenuity of his siblings) to make extra money and to keep everyone fed, clothed, and the household running. He later lied about his age so he could enlist in the Canadian Army during WWII to defend the country. There’s a lot of survivor grit in my family. And every day I’m counting on the possibility that I somehow inherited some of that.

Because being J’s mom requires survivor grit, and unfortunately, there’s never a day off. There is no forgiveness from deviating from the plan. If I let down my guard for a millisecond, J sees that and uses it to his advantage. Yes, sometimes our relationship is an all-out combat type of relationship. If we don’t practice reading comprehension for two weeks there’s hell to pay when we start it back up again. If we let up on piano practice for a few weeks it’s me v him, battle of the wills on the piano bench seeing who can sit long enough without relenting. If I stick with it long enough (at least 45 min) J will relent.

Outwit, Outlast, Outplay.

Most days I have no problems putting on a game face. Most of the time I can handle the stresses of having an autistic child—it’s not always a picnic, but I can do it. I get up every morning, put one foot forward, go through our routine and go to bed at the end of the day and wake up and do it again.

Sure, I’ll have those demoralizing moments of, “Well shoot. That just blew up in our face. What do we do next?” and sometimes there’s a few tears, but at the end of the day I really do like the challenge. I like to figure things out, research, research, research, (I love to read), and build new strategies. I love the fact that this experience lets me understand the human condition. I’m a writer. I thrive on that. But two or three times a year, I’ll have a meltdown–that full on cry-out where you’re body just shakes and your eyes are so puffy it’s hard to put in contacts the next morning. And there’s snot. Lots of snot: all over your face and the sleeves of your shirt. You just feel like you’ve sort of hit a wall.

A few weeks ago, I hit my threshold. I had one of those meltdowns.

It wasn’t J’s fault, really. This time it came down to burn out. Running on all cylinders, pushing an elephant up a mountain, running a marathon to find out that mile marker 19 was mismarked and you were only on mile 16. Pick your burnout metaphor.

These are the things I came out with after this triannual meltdown:

1) Know your sabre tooth tiger response. Mine is flight. Luckily I have a spouse who knows me well enough to know that’s my response and to be okay with it. It was Steve’s idea to fly me out to New Jersey to see a friend for 5 days so I could mentally regroup. I’m so glad I have such supportive friends on the other side. Hayley was more than happy to let me crash at her place for a while. I was really grateful, because sometimes I have to run away in order to come back feeling better. (My favorite thing Steve says to me right before I have to take a trip somewhere is, “Have fun! Remember to come back, right?”)

Hayley showing me the Jersey Shore

Hayley’s a good friend from grad school and it was so nice to not “do” anything and to talk writing and craft and MFA memories and publishing and to remember who I was again and what my plans for myself were and to NOT HAVE TO TALK ABOUT KIDS OR BE AROUND KIDS and just hang out with her! I needed to remember what I look like without J. Hayley took me to Princeton, probably the highlight of my trip, and I fantasized what it would be like to be a student again—a student there, just to sit in on lectures and listen and learn and LEARN. About everything. About writing. To sit in on a class taught by Joyce Carol Oates. Hayley and I joked about what our lives would be like to be a student there. Speculated what the party life would be like. I ate up the ivy league atmosphere, the trendy campus steeped in academic traditions. Because at the end of the day, I really do like challenges. I love learning new things. I think it’s in my DNA. I like to figure things out, research, research, research, (I love to read), and build new strategies. I love the fact that reading and studying lets me understand the human condition. I’m a writer. I thrive on that.

Oh Princeton, such a very pretty college town. I wonder if they have any teaching positions for Steve…

2) My two loves in life can sometimes be my mental/emotional downfall: being a mother and being a writer. There’s a lot of criticism and a lot of failure in both. It can take YEARS of your best efforts to be finished, sent of, and then rejected and rejected again. (Ugh! my Butterfly Endings manuscript is killing me. I’ve had to have sent that out to at least 30 journals by now, but all I’ve been getting lately is, “close, no cigar” type rejections). And you can never stop being either, which contributes to burnout. Obviously, with kids, you’re always on call, but as a writer, your mind is always turning too. I found this article online the other day that helped me figure out how to tame the creative burnout too:

http://performing.artshub.com.au/news-article/career-advice/performing-arts/madeleine-dore/why-we-are-burning-out-in-the-arts-249582

3) Eliminate stupid stress: This comes in many forms. Sometimes it’s just saying “no” to something or someone. Maybe it’s giving yourself permission to give into a few guilty pleasures (like downtime where you do NOTHING–no reading up on autism, no reading, no nothing. Total veg on the couch). Maybe it’s putting down that manuscript you’ve been beating your head against the wall about (I have 2 short stories that have been driving me crazy). Maybe it means not watching baseball the only time of the year you actually care about baseball (because your Blue Jays are pitted against your husband’s Royals). I kept my emotional distance on this one this year. I checked the Jays’ score on my phone up until they were out. Once the Royals made the World Series I let Steve sweat it out by himself. Usually I’m a supportive wife but this year I just needed to leave the family room. I don’t need unnecessary stress when I’m already stressed out. Sure, it’s thrilling and fun. The Royals put on an incredible show (Steve did show me the highlights) but I can’t go weeks on end, in real time, stressing out on something that doesn’t matter at the end of the day (sorry Steve. I know. Sacrilege.). Got to keep the emotional reserves up. Got to pick my stress-out battles.

I’m always teaching J how to manage his thoughts, how to “train his brain” to not respond, act, react, or become anxious about something. At 35 I’m learning that sometimes I need to play games with my brain to keep it grounded and far from wandering off into crazy town and hanging out there too long.

Outwit, Outlast, Outplay.

Here’s to survival and sanity for everyone!