A Tutor Tutorial

Sometimes people come along in our children's lives who really make a difference. You probably hear a lot more about the instances where the opposite is true: when a teacher, aide or therapist has taken advantage of their position over a student and at the very least wasted precious time, or, at the other end of the harm spectrum, actually abused a student mentally, emotionally, or physically. There's a particularly nasty instance of this on the internet right now.    
So this post is, rather, to sing the praises of tutors who've come into our lives in the past year.  Call it the Tale of Two Tutors, if you will. 


Yes, this is a long post, but hang in there, especially if you're the parent of a teen with HFA or Asperger's.  You might find some hope here.


Daughter Dearest has struggled mightily for the past three years with high anxiety in the classroom paired with some pretty severe executive function challenges as well. (If you're just joining us, read Introductions Are in Order to catch up on who we are and what ails us, so to speak.) She's had a tendency, as a result, to abandon her college classes after the first four weeks or so. It was painful (and not cheap!) to watch her go through this semester after semester. We'll come back to DD and her tutors later.


Fickle Fan, now in his senior year of high school, is about to take the Algebra End-of-Course Assessment (ECA) for the fifth time. Yes, the fifth. In addition to his extreme problems with writing, he's also been living with an intense hatred of all things math-related, probably since about the third grade. (For some reason, this doesn't seem to be unusual in a subset of students with high-functioning autism. I know others going through this same math aversion as well. Something to do with the hardwiring, I'm sure. Researchers, we need more studies on this problem, please!) 


For those of you not from Hoosierland and/or who don't live and breathe all-things-high-school, here's the scoop on the ECA: by state law, high school students are required to take the algebra, English and biology ECA tests. Currently, they need to pass the algebra and English tests in order to graduate with a general diploma. (More on diploma choices in a later post--don't get me started on that tangent now!) Students who don't pass the ECAs their first time, need to not only take the test again every time it's offered--in our case twice a year--but also take a remedial course to prepare for the test.  


FF passed the English ECA following stellar remediation in school his sophomore year. We were thrilled. But he's been beating his head against the Algebra brick wall for four years, really five, because the process started in 8th grade. His freshman year he had to take Algebra and remediation simultaneously, because his 8th grade scores, although close, weren't in the passing range. After just five weeks of freshman Algebra, his resource teacher shared with us that FF's Algebra teachers didn't think he would ever pass the test (despite his "almost" scores the previous year) and would probably only get a D+ in their class. Rather than feeling supported and encouraged in remediation, he felt tortured. So did we, with the homework. It was a disastrous situation for us. Rather than repeat it, his sophomore year he completed remediation by doing an online program that was extremely unhelpful, didn't teach the skills FF needed, and didn't always cover the material on the test. His junior year, he took remediation with his resource teacher, and though he improved on the test, he was still a ways away.  


Okay, enter the wonderful world of tutors. We started with DD, who needed to  pass her freshman Algebra course at Ivy Tech. DD, keep in mind, is highly intelligent and scored fairly well on the math section of the ACT. She's not derailed cognitively or from a lack of skills; she's challenged by other aspects of her Asperger's. That's difficult to understand for a lot of tutors (and teachers). Ivy Tech has campus-based tutors, but it's at a drop-in center where you get whoever's on duty that day, and that tutor may be working with several students at once; there's no continuity and no focus or understanding of DD's particular challenges or strengths. Moreover, DD would need a boatload of courage and self-advocacy to walk into the tutoring center, and, at the time, she was highly skeptical and didn't see the value in having a tutor. (Postsecondary support for students with high functioning ASDs is another post that's on my to-do list.) 


So we sought out and found a tutor who is not only truly gifted in math, he also has has Asperger's himself. We were, not surprisingly, hesitant about this arrangement, but he insisted he could get her through the class. After the first two weeks, he took me aside and assured me that DD is extremely intelligent and would not have a problem.  And she didn't. At first she still struggled with studying and homework deadlines, but meeting with the tutor-- usually at the public library--helped keep her on track with assignments and even helped her work through some of the concepts she just wasn't getting in class. After flunking this class the first time (she stopped going), DD passed with a B.


During the summer, the tutor approached us and said he could help FF even more than he could DD.  We politely said we'd think about it, but knew FF would balk at the very suggestion of giving up precious afterschool time to work with a tutor.  And he did.  But rather than undergo in-school remediation again his senior year, he eventually agreed to work with the tutor twice a week, and school staff blessed that arrangement as well. Tutoring began in the fall, and we gradually increased the time to 90 minutes twice a week, so that FF wouldn't have to worry about dreaded homework. He didn't pass the ECA in December, but after just six weeks of tutoring, he again increased his score to "almost." He's probably two or three problems away from passing. And with the data from the first test, it's now evident that what FF needed the most help with is graphing and learning to use a more sophisticated calculator. His processing speed for problem solving is extremely slow, so the calculator is a must. For the past several months, they've been focusing on those skills and doing practice tests. FF is at his wits end and really wants it to be over, but he's tolerated the repetition and the time investment. I'm pretty sure he'll pass this time, and probably with a pretty good margin.  I'll let you know what happens. One way or another, the tutor deserves a medal.  So does FF.  Does he like or appreciate Algebra now?  Absolutely not! He still hates the subject with a passion, but he realizes this is just to get him through the test.  Fortunately, the tutor has the patience of a saint and doesn't take personally that fact that FF isn't willing to connect with him on a math-loving level. 


Back to DD, who this spring was about to retake an Exposition and Persuasion writing class. Different skill, different tutor needed. This time, though, after seeing the value of working with a tutor, DD was ready and willing to accept help. After contacting the English department at IU, we found a grad student who had an interest in students with Asperger's. Long story short, DD has completed all her writing assignments and is passing that class with an A. More importantly, though, the tutor not only helped DD improve her writing and researching skills, she also helped with the organization challenges and took the burden off of us, so that we didn't always need to be the nagging parents. The tremendous side benefit has been that after the first couple of times meeting at home, DD and the tutor made their own plans to meet at a local coffee shop, so it became a social opportunity as well. DD's mood has brightened and we've watched the stress and anxiety melt away.  Her competence and self-confidence have also risen.  Hallelujah!


We pay for tutors out of pocket, of course. Usually about $25/hour, but we've increased that to $30 when we've seen their work and dedication.  I wish that the schools and Ivy Tech had these kinds of supports at the ready for students like ours, and I'd like to see parent groups advocate for that. But for now, we believe it's an investment well worth making.  And after watching how far our children have come in the past year, I think teaching the benefits of and how to work with tutors should be a goal included on the IEP of almost every 8th grade student with a high-functioning ASD.


So, here's to tutors. You're an essential part of the successes we've had in the past year. Please know you are valued and have our many, many thanks!

Let Sleeping Teens Lie

Like most teens, both my children like to sleep. Until very recently Daughter Dearest (okay, she's 21, not exactly a teen anymore) was notorious for sleeping until 2 or 3 p.m., especially if one of us didn't go up to her room and insist in obnoxious Parent Speak that she remove her keister from her bed. "And I mean, now!" She's frequently up most of the night, so it's not really surprising that she is dead to the world every morning. I'm told it's an Aspie thing. 

Our son, Fickle Fan, on the other hand, gets up pretty well on his own. On weekends.  And only on weekends. The Monday-through-Friday morning routine is legendary in our house.  Epic battles. And for Fickle Fan this has been going on since he was seven or eight years old. With him, it's not strictly a teen thing, it's definitely more of an I-hate-that-stupid-school-and-you-can't-make-me-get-up kind of a thing. Teendom has only made it much, much worse. Now he not only gets up late, he's angry with the world--me, mostly, but the whole world too--and nine times out of ten, he hasn't brushed his teeth, washed his face, or put on deodorant. And don't get me started on shower avoidance.

This is not one of those we-need-advice blogs. Really. We have tried just about everything: motivate, reward, withhold the reward, teach, teach with pictures, fog horn alarm clocks, soft music, lights, food, caffeine, medication tweaking, beg, plead, and, yes--I'm not proud of it--yelling, screaming, and physically dragging the boy out of bed. I have not used a backhoe yet. Or TNT. Hmmmm. 

Our relationship was so frayed from the a.m. mania and arguments that I actually toyed with hiring a personal aide who could come to our house in the wee hours of the morning, wake the boy, and take him to school. But it was extremely expensive and I couldn't find someone willing to work the hours. (Note to policy makers: The Medicaid waiver would've come in handy here.)

The fact that our school system, in its infinite wisdom, decided this year to start classes for its high schools at 7:30 a.m.--despite all of the research telling them that due to altered circadian rhythms in adolescence, teens are much better off with a later start to the school day--was the last straw. Rather than have him chronically missing his first class of the day, our semi-solution was to alter his schedule. He comes in an hour later than everyone else, arriving with about 20 minutes left in the period, to a Resource class. 

I still fight the fight, but it's not quite as bad as it was, and knowing that he's not missing an academic class, I'm less stressed. Originally, that grace period, the first 20 minutes of his day, was to be spent on transition activities--practicing job interviews, filling out applications, participating in career development activities, etc.--activities that FF really needs but he's not experiencing because he's getting a general diploma (more on the "gap" kid issue later).  

Unfortunately, none of that has happened. And since he's missing most of that first period, I wanted him to stay past the 2:55 dismissal so that he wouldn't be shorted that time. My thought was that he could work in the library with a tutor, do some work study either there at school or in an actual work environment somewhere. The school balked at that. Dismissal time is dismissal time. No way would they extend the day for him--though they do for students in detention. So we have sort of cheated him out of a class experience. He still has all his credits, though, and he's less apt to be in a mood when he walks into an academic class. All in all, I think this was the right thing to do.  

As for Daughter Dearest, things have been improving across the board for her since January, including her sleep-wake cycle. I attribute that partly to her part-time job, which occasionally requires her to be at her cash register at 8 a.m., and partly to some progress she's making in school, which has lightened her mood and her confidence. Could be age too. I'm hoping those factors work for Fickle Fan, too, once high school is a yearbook memory. 

Sleep tight, teens. 

Peer Invitation: Voila! Instant Participation

The last post was all suspension and gloom.  So, as promised, the good news...


Fickle Fan actually went to a high school dance.  He came home last week (before the dreaded suspension incident), and pulled out a slip of paper he'd been handed in school.  A couple of kids told him about the dance marathon, a fundraiser for Riley Children's Hospital, and told him he could register online.


The shocker here is that we've been trying to get him to participate in school events, including dances, all year long.  In his last case conference we even asked that extra-curricular social activity and interactions be written in as a goal on his IEP.  It's there (sort of), but the school, unfortunately, hasn't addressed it at all.  And, of course, because we're Parents--and therefore pariahs, never to be respected or trusted in the world of teens--nothing we suggest to FF is a good idea.


So what was different this time? A student (or maybe students, I'm not sure) personally invited him to come. That's so key and something we've been trying to get through to the school for the last four years. FF is far more likely to participate and engage in an activity if a peer (preferably someone he admires) asks him to do something.  Whoever the student was (I wish I could personally thank him/her/them) explained that it was a fundraiser for a good cause, that it would be fun, that he wouldn't need to dress up, and that FF wouldn't even have to dance.  He could just come, hang out and enjoy.


And he did.  I'll admit it was a little nervewracking for us. My husband dropped him off at the school door (and, mind you, this was not HIS school but one across town) and we waited for his call.  And waited. And waited. We knew he wouldn't stay very long--we estimated an hour--but when we didn't hear from him, we started to get a little nervous. My husband's calls to FF's cell phone weren't answered. I knew it was too loud in the gym to hear his phone, so that didn't really bother me.  But after an hour and a half, the can't-stand-it-any-longer Dad went to the school, peeked in to the gym and saw FF off in the distance texting on his phone  


Sure enough, my husband gets a text: "Whts up?" Husband replies: "Just checking to see if you're ready to leave yet." FF's reply: "Not yet." Halleluyah!! He stayed another hour before texting to say he was ready to be picked up. Definitely a happy camper when he came home.  Said he had a great time. Yes!!


Now if only we could have another student personally ask him to participate in graduation.  As of right now, May 25 could be an anti-climactic end to a Herculean effort (ours and his) to get FF's general diploma.  Oh well.  FF may not want to party, but I'm darn tootin' sure taking my husband out somewhere for a toast or two and some mutual "Job well done, Spouse!" pats on the back. 

A Suspension on the Way to the Dance

I'm baaack.  Finally. 


"It goes on the blog."  I keep saying it. Every new wrinkle or bump in the transition road we're traveling.  It goes on the blog.  Except it hasn't been going on the blog, because I haven't been writing it.  Mea culpa.


So here goes again.  I'm going to try gluing my fingers to the keyboard come what may. American Lit papers, PowerPoint presentations on India's global economic position, research on varying viewpoints on euthanasia.  It all has to get done, but I will declare Mom Time on the laptop so I can share what else is happening besides homework in our house.  We continue to ride the autism roller coaster while we're at the transition carnival.  It's a white knuckle ride, and I think you should experience it with us. After all, why should we have all the fun?




So since it's freshest in my rapidly decaying, post-50 brain, we'll talk about latest first. The bad news. Our soon-to-graduate son was suspended for five days last week. After not having a serious incident in school for over a year and a half, I got the dreaded call from the assistant principal because FF pushed and threatened another student who decided to take it upon himself to tell FF why it was inappropriate to look over someone's shoulder while they were on the computer. FF felt belittled and insulted, and in absolutely no time at all, he rocketed from zero to sixty in the anger zone.  It's not a pretty picture when it happens. Seven weeks from graduation. Sigh. 


Why is this a transition issue? Because it means FF is still prone to this very dangerous type of over reaction.  And it means it could happen on the job. (IF he ever gets a job, of course--we'll explore that in another blog episode.) 


We explain it to him visually (i.e., "This is how the school measures what the other student did"--holding hand out flat, palm parallel with floor at about knee height.  "But this is how the school measures what you did"--holding hand out again, but this time higher than my head.).  And he does understand that he acted inappropriately and lost control of himself and his emotions. But, to our dismay, at the ripe old age of 18--yes, he's now 18--he's still very immature in a lot of ways. He's not remorseful and is still very angry at the other student.


This is the nasty side of autism that many people don't want to talk about. For us, it's gotten better as FF has gotten older, but obviously, it hasn't gone away.  And for the most part, because he's higher functioning, he's on the "front lines" every day at school.  I suspect that most students know he's different, but most don't know why. He does't have an aide. He doesn't rock or flap his hands or have most of the obvious stimming signs of autism. So I think people expect more of him.  Usually that's a good thing.  But not always. 


An employer should know about FF's emotional triggers what to do in the event that he would go off the deep end. Granted, there are probably plenty of adolescent teenagers who've been in fights at school, who go on to get jobs and have stellar careers. I'm betting they don't tell their potential employers about what went on in the high school hallway when they felt "dissed."  


I don't think it's necessarily fair that FF should have to disclose his anger issues when other teens don't.  But it's a safety issue, one we'll need to discuss with Voc Rehab and his disability services provider (if he's determined eligible for employment services). I guess I just feel obligated to let them know that when FF is in the anger zone, he can become physically aggressive, throw things, swear and be verbally abusive. He's an oversized, talkative teddy bear most of the time, but definitely not when he's in in the anger zone. We had been breathing sighs of relief, because we thought he had moved past these episodes, but it's scary to see this happen again. He could hurt someone, and the police could be involved. It's my ongoing nightmare.


To address these issues now, we need to be sure:


1)...there's a teacher in the room.  There was a sub on duty the day of the incident, but his actual teacher has been out sick (unbeknownst to us) for almost two weeks now. We're working with administration so that he can be in another classroom with a teacher he likes until his teacher returns and until we have a plan to reintroduce him to the class. It doesn't excuse FF's behavior, but inadequate supervision in a classroom for a long period of time is a recipe for disaster. 


2)...he learns to recognize when he's going off the deep end emotionally, knows exactly what to do about it, and practices that skill. So far, we've talked at home with him about what to do, but he needs to go through the motions in school with his teacher, a speech therapist and selected members of the administration. 


3)...his psychiatrist is kept in the loop. That's the other ugly little secret of autism: Many of our children are on some pretty heavy duty medications.  The great thing is that those meds have enabled him to attend school. Without them, I don't know where we would be.  The flip side is they all have side effects and things change as the child grows and develops.  Sometimes dosages need tweaking; sometimes we need a new med altogether. This was just one incident, but because it involved a suspension, we let the doc know.


He's back in school now, but his teacher isn't, which means things aren't back to normal, but they're better. 


So, we did have some good things happen last week too. (It's not all doom and gloom, I promise!) So that's my next post: the good news.  Stay tuned!