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

Never a Controlled Experiment

We visited the Plains Art Museum the day after Christmas. This is the first time J had ever shown interest in the installments at all. He went around reading the placards. He did get bored after a little bit, but I was impressed that he could focus enough to find something he was interested in. He really got into Picasso’s biography, and we made a game touring Picasso’s pottery and figuring out which President of the United States was in office when each piece was made. Usually he’s very overstimulated in places like this. Maybe the new dosage helped. Maybe he’s just maturing. Sometimes it’s really hard to tell.

I feel like maybe I should write this post in installments—in fact, maybe over the next few weeks I’ll go into a little more about our experiences and thoughts on autism and medication. It’s obviously not an experience, story, or discussion that can be summed up in 1,000 words or less. It’s also a very emotionally charged one—some people feel really strongly for or against medication.

At this point in J’s life we feel that medication for his anxiety and ADHD symptoms are necessary. That might change. After all, he’s constantly changing. In fact, we saw Dr. R. a week and a half ago and after the nurse took J’s vitals she exclaimed, “Wow! He’s grown an inch and a half in TWO MONTHS.” It’s crazy. I’d noticed he’d been growing too, but I didn’t realize it had been so much so fast.

After our visit with Dr. R, she suggested that we might try upping J’s medication for his ADHD symptoms and thought that trying them over Christmas break would be a good idea. I came home and Steve and I talked about it and we decided to go ahead and try. J would be out of school for two weeks, and although we wouldn’t get a good reading on how it would affect his academic performance, we would be able to see how it affects his impulsivity and whether it increases those precious few seconds between a trigger and a reaction (the time where he can also apply some of the mindfulness strategies we practice every day). It would also give us a chance to see if J would have any negative side effects—in a safer, more manageable environment. After all, it would be harder for teachers (and more embarrassing for J) if he had more extreme emotional mood swings, stomach aches, etc. at school.

Two days into the new dosage, I started to doubt the timing. I had thought starting two days before Christmas would be best. It would give us two full weeks to see if 1) the medication was helping 2) the medications was helping but had undesirable side effects or 3) the medication didn’t seem to be doing anything at all. What I hadn’t thought about was that things would be totally different for J this week. Steve’s mom would be flying into town for Christmas, we wouldn’t have that fixed “school” routine, our eating habits and times would be all off, and then there was the whole Christmas Day experience, which J historically has had a really hard time with.

The first two days went fine. And then Christmas Day and Boxing Day happened. For those of you who are not familiar with ADHD medications, there’s this magical, bewitching hour (otherwise known as hell) that sometimes happens between 3:30-4:30pm when the medication wears off. Some kids have a severe reaction, a “coming down” or “rebound,” and they need to take another half dosage to ease the “coming down.” We went through this a year ago for a few days after initially starting the medication, but I forgot how bad it was. To say that J was an emotional wreck Christmas Day and the following day would be an understatement. His sleep for both of nights was terrible. I’m glad Steve’s mom was patient and understanding through the whole ordeal. She only gets to see him a few times a year, and I felt bad that she had to experience this side of him, but she was so supportive, calm, and patient. After those two days, Steve and I almost took him off the new dosage—but at the same time, I wasn’t sure if he was having meltdowns and sleep issues because of the medication, or because it was Christmas and his routine was off and grandma was here.

I started kicking myself for upping the dosage “at the wrong” time but then I thought: When is the right time?

After all, parenting has never been a controlled experiment.

The variables are constantly changing. Children are constantly growing—it’s their job. They grow tall, gain weight, lose weight, and hit puberty. Their body mass and levels of hormones are constantly fluctuating. They never sleep for the exact same amount of time every night and never eat the exact same caloric intake a day. No matter how “routine” our lives are, we never do the exact same things at the exact same time for the exact amount of time long enough to come up with any perfectly controlled results. There are 1,000s of factors every day that we can’t control and are always changing. People unexpectedly drop by or call. Things surprisingly go right or wrong. Nothing is 100% steady or predictable.

With J the variables were most definitely all mixed up. The meltdowns and “jitters” could be the medication. It could be the holiday and non-existent routine. It could be both. Or it could be something else altogether. Like being a teenager and waking up “on the wrong side of the bed.” A hormone swing.

Since we were in the holiday weekend, and didn’t have access to Dr. R’s office until Monday (it was bad, but I couldn’t justify it being an emergency call), we decided to stay the course. And Sunday was better and today was better too. In fact, I feel like J’s attention and impulse control have been really, really good today. And we haven’t had any “rebounds” or bewitching hours Sunday or today. I’ve been better at asking J how he’s feeling–before the tapering of the medication. “J how are you feeling? Are you feeling jittery? How’s your tummy? Are you feeling anxious?”

It’s hard to tell. Maybe today seemed better because I wanted it to seem better—because I needed today to be better. I’m not always an objective observer. But we’ll keep at it, and we’ll be keeping in touch with the doctor’s office along the way. In a few weeks we’ll be able to really see if it’s the right choice forward or not. As J always says, “tomorrow’s a new day!” And that really could mean anything.

Here are some pictures of our holiday with Sandy. It was great having her here! It’s great that she’s so supportive of us as well. She really gets to see the good, the bad, and the ugly, but that’s what families are for, right?

Star Wallowing Bull

1st edition Picasso pottery

Grandma Sandy and the family at the Plains Art Museum

Picasso pottery

J with one of Star Wallowing Bull’s paintings

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.

When Family Can Help You Settle Your Glitter

I feel like the summer is flying by and we’ll be starting school again in no time. I was talking to a co-worker last week and we both decided that the fourth of July is the halfway mark of summer. After that it’s just a fast downhill descent to the beginning of fall semester. That means J will be soon starting grade seven and I’m not ready for that. We’ve got so many things to learn and work on before that happens. We’ve been working on handwriting, but I want that to be at a better place before school starts. We’ve been working on reading comprehension but not as much as I’d like. I had grand plans for writing projects but we’ve only completed one. There’s still so much I want to go over with him.

With all my ambitions for academic rigor, I need to remember that living is part of learning. I keep telling myself this–that there are lessons to learn, opportunities outside of our daily drills of running, piano, handwriting, reading comprehension, and math. It’s really hard; I feel like we’ve been playing catch-up since the toddler years and to give myself permission to let that go for a few weeks is hard. There’s a lot of paranoia being a mom of an autistic child. Every wasted day is a wasted opportunity to rewire the brain. Every change in routine can undo weeks of work, so I repeat this mantra:

Living is learning too.

This week we headed to Kansas City, Missouri and Wichita, Kansas to visit our parents. We were lucky enough to have some siblings meet up with us. I brought along J’s piano books and some “homework” along the way. Sometimes we were able to fit most of his routine in, sometimes just a few things. We’re lucky that J has (mostly) gotten over his insistence on strict scheduling. He prefers to practice piano every day, but when we missed one day it wasn’t the end of the world. Some activities were great–the 10 hours at Worlds of Fun with late lunch and late dinner ended up working out just fine. The trip to the Royals stadium the next night went well initially–until J started thinking about our dog Fred and how much he missed him. By the 8th inning when J announced he was so tired and that ten o’clock was way past his bedtime. The workers of Kauffman stadium got to experience a full twelve year old autistic meltdown. It’s hard to know how to push when you’re out of town, out of your element.

Enjoying the Royals Game (before the meltdown)

Smoke from the Canadian wildfires made it as far south as Kansas City making for a hazy night.

A few days later we headed down to Wichita and visited more family. My sister’s kids were there as well and so W had a good time playing with them. They went to the trampoline park and the Nut House. Overall the whole trip has been a good experience.

Fun with cousins at the trampoline park.

The autism factor is interesting when you’re dealing with family. We live so far away from family that we’re lucky if we see them every six months,and within six months, J changes astronomically. Luckily, family is always willing to learn, support, and enforce the things you’re working on. I explained to everyone: “If he talks about exit signs or spelling words, just tell him that it’s inappropriate and redirect the conversation. He knows it’s inappropriate and he won’t be hurt if you call him on it. If you’re annoyed that he keeps talking on and on about the same thing, it’s okay to tell him to stop. The great thing with J is he’ll keep trying to interact with you until he figures out the right way.” That’s great thing about family is that they’ll back you up, even if they’re uncomfortable or unsure if they’re “doing it right” they’ll still try.

*Bonus points and a shout out to my sister Laura–one day J was having an anxiety attack (because he was overtired from the late fourth of July fireworks). She knew exactly what to do, she pulled him in close to her and started rubbing his back, ignoring all of his anxiety-filled gibberish, while I was able to grab the ipad for a calming app. Sometimes you feel so isolated in this autism journey, and when someone who isn’t by your side every day and doesn’t deal with autism every day is able to give you a hand, it makes all the world of difference.

*The “Settle Your Glitter” app available through iTunes is awesome. And it’s free. Which makes it even more awesome. You can check it out here:

https://itunes.apple.com/us/app/settle-your-glitter/id962467492?mt=8