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?

1st edition Picasso pottery

Grandma Sandy and the family at the Plains Art Museum

Star Wallowing Bull

J with one of Star Wallowing Bull’s paintings

Picasso pottery

Evolution of the Choir Concert

I’m holding my breath–ready to pass out–because we’re so close to the finish line but I can’t quite declare that we’re in the clear yet. At noon today, I announced to Steve that we had just passed the twilight zone hour (if J’s going to have a catastrophic meltdown at school it’s almost guaranteed to happen during the 11:00am-12:00 pm) and that we have one more day to go. We just need J to hold it together for one more day and then we can officially declare victory for the semester.

I don’t know why, but Christmas time has always been hard for J. Someone at church told me once that she had severe anxiety and that Christmas always triggered a flare up in her anxiety too. Maybe it’s the expectations we have at this time of year, the “countdown” to the “big day,” the crazy scheduling, the added responsibilities. I think for J it probably is a lot or all of these things.

I’m learning more and more that when you love (and live) with someone with anxiety, it’s hard not to let their anxiety become yours. Typically I really like this time of year, but over the years it’s become a season of helping J cope and manage. It’s become a season of holding your breath, crossing your fingers, doing a little dance, knocking wood, praying, and all other sorts of ritualistic and superstitious behaviour to ensure you both make it.

This year has been a little different (knock on wood). J has been able to do a great job of managing his anxiety up until the holiday (we still have tomorrow–I hope I don’t jinx it) however, this year’s been hard in the sense that because J’s getting older, the crazy scheduling and other daily responsibilities are bigger now. Choir concerts are on school nights instead of during the day, huge homework projects and end of unit exams are booked up right until the last two days of school. For the first time (for as long as I can remember) I’m really, REALLY, ready for the kids to be out of school just so we don’t have to keep up with the school stuff  or worry that J is going to have an explosive meltdown because of the stress of the season.

So far we’re making it. We had a really big victory last week. J had his grade 7 choir concert and he NAILED IT. For Steve and I, choir concerts have historically been a really stressful experience. In the beginning (k-grade 2 or 3), J wouldn’t let us in the same room as him during the concert. Even if he saw us try to sneak in, he’d begin a full on meltdown on the risers and scream.  Once J decided it was okay for us to watch him, it was painful to see how he couldn’t stay still on stage–how he’d fidget–not in endearingly quirky ways, but in socially inappropriate, ways. If he’d get excited during a song, he’d rub his legs while he was singing and jump up and down or smell his fingers, or flap his hands.

But this year–this year–was a breakthrough. J’s para (who is AMAZING–we’ve always seemed to luck out with amazing support staff ) came that evening to help out in the backstage in the wings. J had two girls placed beside him to help him out too. This was the same set up as last year, but his para worked really, really, hard with him to prepare him for onstage behavior. As in: no flipping ties, no flapping hands, no flipping band aids on fingers (he compulsively picks his fingers until they bleed), no chewing or picking fingers, no rocking, no hands on legs, no rubbing legs, no smelling fingers, and stay as still as you can. And this year the stars aligned and it happened. We had the best choir concert on record.

Here’s a short little bit of video evidence. J sings with the girls because 1) he still has a soprano voice and 2) grade 7 girls are much more mature than grade 7 boys and are therefore much better peer helpers.

(I cut down the clips so you can see how K and L, the girls beside him help him out at the 0:08 and the 2:17 mark. Bless his heart–he’s trying so hard to keep his body parts all in control.)

 

As I sat in the audience, it took everything in me not to erupt into a blubbering,crying mess. That’s one of the amazing things about the autism experience. Your heart just spills over with love for the people who help your kid out along the way. I just sat there, that gratitude you know you can never really repay for someone, for C his para, K and L standing next to him, E and M and all the other girls on stage who have helped him all through elementary school.

Yeah. There’s some pretty awesome people in the world. And I’m really glad they’re sharing the same space on this planet as me.

Have a very Merry Christmas or a very happy holiday in whatever way you celebrate!

–The Becks

 

 

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!