Reconciling the Present with the Future

I feel like J is always more than an arms length away from fully understanding him.

I think it’s almost impossible as a parent with a special needs child to not be constantly thinking about the future. I’ve been guilty a million times over. I’ve kept a running list of potential professions for J since he was 5.

-At 5 I thought he might have a potential career as a mail carrier. He created mental maps and physical maps of the neighborhood constantly, complete with Christmas lights, basketball hoops, and flags. The only big hang-up was dogs. At that time, J was terrified of dogs.

-I’ve gone back and forth on the idea of a grocery store bagger or even cashier. It’s a low skill job, and the days I feel like he’s failing dismally in academic areas, this is the job that comes to mind. But it’s not the perfect one either. At 7 he would have meltdowns if he saw people with freckles. He’s over that now, but he gets fidgety over spellings and numbers. Would he have a meltdown if he saw a name or a brand with a “misspelled” name? If a total rang up with a “bad number?”

-At 10 I thought he might have a future as a bus driver. The driver on my route to work was definitely on the spectrum.  I learned a new obscure fact about the Beatles every day. If I was lucky he’d mix it up with some Buddy Holly trivia. But would J ever be able to learn how to drive? Would his brain blow up if he couldn’t hit the stops on time?

I keep a list of a dozen possible professions for J in my head. I’ve come up with stenographer, and proofreader or copyeditor. I’ve come up with the possibility of community college or a late entry to college (as a nontraditional student at 30 something. I had a student once in one of my classes who started college for the first time at 35 because of her anxiety issues). I keep the possibilities filed away because I want to make sure that once J graduates from high school, we’ll be able to find a place for him.

This week we his future was lightly touched upon at parent teacher conferences. I got to sit down with each of J’s three core teachers and listen to how they see J, how they’re trying to reach him on a relational level, and how they’re trying to reach him at an academic level. The question on everyone’s mind is, “how do I know if what we’re teaching J is what J needs?” What will he need to succeed in the future?

The answer is I don’t know. Do we push the more complicated steps in algebra when he’s frustrated with the first steps of algebra? Does he really need to know the pythagorean theorem or not? In reality, the answer is probably no. He will probably get along fine with a more “applied math” approach. In fact, I have gotten through life with just “applied math” skills. I have an MFA and not once have I had to graph an equation or use the pythagorean theorem since my first year as an undergraduate. I work at a university and can function just fine without the “higher math” in my life.

Right now I feel that it’s important to keep trying though. It’s by throwing things at J that we can find out what J is good at and not good at, because the truth is I really have no idea. We can see where his interests are and how to push him in those areas. He might be terrible at algebra but really good at geometry. He may be terrible at reading comprehension but a whiz at grammar and usage.

The more I try to plan J’s future out, the more I try to determine what he’s good at and not good at, the more I realize it’s a futile waste of my energy.  He is always changing and progressing–dramatically sometimes. Strengths come out of nowhere. Two years ago, J became obsessed with Presidents of the United States. He knows the order of the 44 presidents starting with George Washington forward and can do it from Barack Obama backward. He knows when they were all born, died, how long their terms were, when their terms were. He just picked it up and he’s been on fire about it ever since.

This year it’s been the same way with geography. He knows almost every capital city of every country on this planet.He’s just started World Language Survey and within 2 days he could identify all 16 phrases—including differentiating between Arabic and Urdu—and I know it’s because of his interest in countries that he’s interested in what is spoken in different countries. We’re only a couple of weeks in—I don’t know how he’ll pick up new languages—but he’s incredibly smart at English grammar and usage. At the same time, he could be terrible and another language’s grammar and usage. I don’t know, but I’m glad we’re giving him a shot in World Languages.

Academically, he’s good at memorization. He’s bad with abstract concepts. It’s easy to feel discouraged and feel like he’s really “learning something” when he can’t yet apply a lot of his knowledge.

Temple Grandin 2013

When Temple Grandin (an autistic woman and professor and Colorado State University in Animal Science and who also swears off Algebra ;)) came to Fargo back in 2013, one of the things she said that stuck out to me was, “It’s not just memorization. It start’s that way. The more they get out and learn specific examples, it builds their Google base.” Being exposed to those concepts–even if he doesn’t understand them all, builds his Google base.

She also talked about  starting with “areas of strength” and spreading out from there. J loves maps—especially Africa. That’s a bridge to vocabulary words in his unit that have more social constructs around them. I really believe the more times he hears the word, “refugee, Apartheid, push and pull factors, colonization” at home or at school, the bigger we’re building that Google base. It will be there ready to access when he’s able to figure it out.

There’s no way to know an autistic child’s threshold for learning and growth—which gives you hope when things get rough. But in the back of your mind you are always terrified of failing them because you don’t know how far they can go if they have the chance. You don’t know how much to push or if it’s too much. You see stories like Carly Fleischmann‘s or Martin Pistorius‘s and you’re scared to stop pushing. I felt that from the teachers on conference night. I know it well. I think about it every day too.

You can watch Carly’s amazing story here:

So I keep monitoring, pushing and engaging him. I’m asking his teachers to keep doing the same. I keep that list of potential professions running through my head but in reality I can’t really plan his life out for him at this point. He changes so quickly. And the world is changing just as quickly too. Well educated millennials can’t get jobs right now. Technology is also eliminating jobs. Even if he were “neuro-typical” I couldn’t plan and predict his life for him.

For now, I think the only plan to go in is this: make him the best person he can be today.

 

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!

 

This Mid-Semester Slump

The curse of daylight savings means that the sun is down around 5 here…but it also means the pretty lights get turned on when you head downtown for an early dinner.

This past week was sort of a bummer week for my middle school kiddos.

After two months of working really hard, J started up with some disruptive behaviors at school again. We still aren’t sure why; we’re still trying to figure that out. His principal, teachers, paras, and Steve and I have tried to pool ideas of what it might be. Have there been any changes in routine? Could his mouth be bothering him? (he gnaws cankers into his cheeks and lip like nobody’s business) Could it be daylight savings? (I swear it’s dark by 5 here in Fargo) We’re coming up on the holidays (and once again a change in routine) could it be that? Or maybe he’s being a middle schooler trying to test the limits. Maybe he’s just being obstinate and defiant.

With J it’s never a controlled experiment. The variables are constantly changing. Which makes it so hard to find a cause.

By Thursday, W had problems of her own. When I picked her up, she plunked down in the back seat, sniffing snot and squeezing the tears back into her eyes.

“Mom, they took away 6-2’s personal devices [aka personal laptops],” she said between sobs. “I’ve held my tears in all day, but I’m just so mad!”

“What do you mean?” I asked, trying to be sympathetic. Honestly I could care less. Sometimes I wish my kids didn’t have technology accessible to them at all times.

“They caught some kids being on websites they shouldn’t be on.”

“Yeah?” Once again I said, trying to sound sympathetic, though taking kids’ devices away for doing inappopriate things sounds pretty legit to me.

“It’s just a few kids,” she said getting worked up again. “And now we all have to pay for it. It’s going to be so embarrassing when we show up to other classes and the other sixth grade teams have their devices and we don’t.”

“It’ll be a good opportunity to learn and do things without a computer. When I was your age I had to look up everything in the library.”

I knew as soon as I said it that W would think I’m an ancient dinosaur.

Friday W plopped in the car again, steaming mad, holding back sniffles again. “The principal came in to talk to the 6ths graders. You’re not supposed to share locker combinations with anyone, but people did and now things are getting stolen. He said that this is middle school and just because someone is your friend one week doesn’t mean they’ll be your friend the next week.”

“Okay,” I thought. That’s actually some pretty sage advice.

“And then our other teacher said we were slobs because we never cleaned up after ourselves!”

Like I said, it’s been a rough week for the Becks on the school front.

I realized that W–and possibly J, and probably the whole staff at my kids’ middle school have hit the mid-semester slump. This is the first semester in 5 years that I haven’t been an adjunct at one of the universities here, but every semester for the last 5 years, at about this time (those weeks leading up to Thanksgiving) I’ve experienced the mid-semester slump. Tough times for administration, tough times for the teachers, tough times for the students.

The mid-semester slump where the honeymoon with your students is over, and the feeling is mutual on their end. You’re counting down the weeks until the end of semester, and you’re trying to keep that vigor and passion for your subject even though they’re half awake and attendance is spotty because of pressures from other classes. Out of nowhere you have students showing up during your office hours—office hours you’re desperately trying to keep open so you can catch up on grading. These are the students that haven’t attended your class since the third week of the semester, and even though your grades aren’t up-to-date on Blackboard, you know that they’re failing your class now and they will fail your class by the end of the semester. You have to break the news to them—the news they already know. Sometimes they’ll even say, “If I don’t pass your class, Ms. Beck, I’ll be kicked out of school.” And even though it’s not your fault they’re failing your class, you feel like an awful person, and you hope they don’t show up during the last few days of the semester to fill out an SROI (a student evaluation of the instructor’s teaching abilities) because you don’t want them filling it out while they’re still mad at you for not passing them.

This week made me really appreciate what the teachers and staff do for my kids and their educational endeavors. Being a teacher is hard.  I really really appreciate what they have to put up with.

And because I’m frustrated with J right now, I appreciate them even more. I appreciate it when after we have an incident de-briefing, they tell me that they still love my kid and that we’ll figure this out.

Saturday night, decided to try to take a break from the slump. Steve was in Las Vegas for a work conference, so it was just me and the kids. We went out to eat. We came home and had ice cream.

Dinner at Sweeto Burrito. To ease the slump.

 

The kids have two days of school and then it’s a break for Thanksgiving and then a few more weeks until winter break. Like I tell J when we’re running and it’s getting tough: “We’ve got this. This won’t last forever.”