Accommodate or Modify?

There's usually a big leap, content- and testing-wise, between middle school and high school. Not a big surprise. However, when students with disabilities have been working with a modified curriculum, homework requirements, and/or tests, it can be a bucket-of-ice-water in the face when transitioning to high school only to find out that those modifications could put a diploma out of reach. Especially if you've been getting As and Bs in your classes all this time. 

Given those fabulous report cards, some parents of high school freshmen and sophomores are dumbfounded when they discover that their students are struggling in every academic class and can't pass the required End-of-Course Assessments (ECAs) for algebra or English. Why is that a big deal? Because you can't graduate with a general diploma in the state of Indiana if you don't pass those tests. (Sort of. There's a GQE Evidence-based Waiver, a.k.a. "ECA waiver," for students who meet certain requirements. More about that here.)

So, stellar middle school report cards, but a frustrated flunking freshman. Where's the disconnect?  It's possible that the expectations for some students with disabilities have been lowered for years to such a degree that they're learning and progressing at a much lower level than the rest of their peers. They're still getting those As and Bs, but it's because they're not graded on the same work, tests or even content. Academic life has been modified for them. 

Modifications are tempting. They make life easier for everyone. Certainly students, but also teachers and especially parents who play the role of homework wrangler every night. And believe me, I get it. Modifications can make life liveable. Thirty math problems, a presentation on Renaissance artists, prepping for that botany quiz, and an essay on Lois Lowry's The Giver can be meltdown and rage-inducing for an 8th grader with autism. 

I think, at times and for some students (mine included), that modifications are essential for sanity. But they come at a price, and it's often one that isn't explained to parents and students until they're six weeks or more into their freshman year. 

Here's the thing: Accommodations are okay. Modifications, not so much IF you want to graduate with more than a certificate of completion.  What's the difference?

Accommodations give students with disabilities access to the same curriculum, tests and work expected of every other student. These are the things that "level the playing field" a bit. They include things like:

• reading a test aloud 
• letting a student read the test aloud to themselves
• letting a student take a test in quiet room
• large-print text books
• text books for at-home use 
• allowing a student to use a computer
• giving extra time to complete an assignment or take a test
• giving short breaks during a test

Those are just a few of the commonly used accommodations, which will vary depending upon the barriers or challenges a student has that prevent he/she from taking a test or soaking up the content a teacher is providing. Case conference committees (IEP teams) need to approve necessary accommodations and they must be written into the IEP. Accommodations listed on a student's IEP can also be used when that student is taking a statewide assessment like an ECA test (or an ISTEP test in elementary school). 

Modifications, on the other hand, actually change either what is being taught or what is expected of a student. They might enable students to learn at least some of the material being taught in a classroom. Common modifications include:

• allowing fewer math problems
• substituting with simpler content material
• substituting videos for written content
• providing word banks of choices on tests
• shorter tests
• pass/fail options

Modifications might decrease student stress and anxiety to the point that they can be included in a general education class. Those modifications, though, may prevent a high school student from demonstrating her/his mastery of or proficiency in a subject or skill, which may in turn prevent the student from being graded the same way peers are graded. And, of course, the more modifications are used in elementary and middle school, the less likely the student will be able to tolerate higher level content expectations and testing in high school and college. 

For a more comprehensive list of accommodations and modifications, see the Smart Kids with Learning Disabilities website here.    

I think there's room for debate as to which camp some of the accommodations and modifications should be pitching their tents in. Use of a calculator on math assessments, for example, is accepted as an accommodation for many standardized tests, but it's listed as a modification in some instances. I understand that if the test is assessing mastery of multiplication, and the student is depending on a calculator for the answer, that would be seen as a modification. I believe, however, that students with severe fine motor or dysgraphia challenges should be allowed to use a caculator for algebra and higher level math. 

This is just as much as issue in postsecondary education. Son FF, who does have nasty dysgraphia problems, is taking an intro to government/political science community college class. He can easily tell you that Jefferson borrowed from Hobbes, Locke, Rousseau and Thomas Paine when he wrote the Declaration of Independence. He can also explain to you how Shay's Rebellion illustrated the need for a stronger Constitution or how third-party campaigns have influenced elections and public thought. Can he write you an in-class essay on any of those topics during a midterm or final exam (currently required)? No. 

Should the instructor be required to test him verbally or give him an alternative assessment? I don't honestly know. I admit to being torn on this one. I'm a writer. I think writing is an important form of neuro-organization and communication. But I understand the Universal Design for Instruction argument about supporting learners in both instruction and assessment. (See "Universal Design for Learning: Implications for Large-Scale Assessment." Should the college encourage, support and accept the use of assistive technology (e.g., laptops, word processing software with grammar and spell checking, and speech-to-text software like Dragon)? Absolutely--and the sooner the better. Right now, though, they're sadly lagging in that department. 

Any readers have secondary or postsecondary experiences with the accommodations vs. modifications issue? Sharing and problem-solving much appreciated!

Suggestion Box Issue No. 573: It's Time to Separate Medicaid from Medicaid Waiver Services

Cindy Mann
Deputy Administrator and Director
Center for Medicaid and CHIP Services
Centers for Medicare and Medicaid Services
7500 Security Blvd. 
Baltimore, MD 21244

Dear Director Mann:

I know you probably don't actually HAVE a suggestion box, so bear with me while I transform my blog into one for this post. 

Here's my recommendation-of-the-hour: Let's divorce Medicaid from the group of supports sometimes called Medicaid Waiver services. Let them go their separate ways. Call it splitsville. Divvy up the community benefits (and funding). Consult the attorneys (of course). 

I know. It's painful and sad, and there might be a name change involved. But it's time. This just isn't working. And it never did. Sure, intentions were honorable. I'm sure the original matchmakers who created this little arrangement thought more people with disabilities and their families could be provided with needed services. They trusted the states to get the job done. 

But the parties are dissatisfied. Waiting lists are long, years, often decades long. Services are too little and much too late. And the rules and benefits vary vastly from state to state. Those extra "little" lifelines like behavioral therapies and assistive technology that the Yentas thought states would provide to help out more families are actually being withheld until children with disabilities become adults with disabilities. 

And then those same young adults, coming out of high school, are told they're eligible for a Waiver (a.k.a. Autism Waiver, Developmental Disability Waiver, Home and Community Services Waiver), but first they have to be poor. At 18. It isn't enough that they have a disability. Or that they and their parents will never be able to pay for the services they need. Essentially that young person with a disability needs to become needy and promise to stay needy for the rest of his or her life. Sure there are trusts, but then someone else gets to decide when, how and on what that young adult can spend their money. It's not a very good lesson in self-determination.

I'm sure the original intent was to make the eligibility process easier. After all, at the time this matrimonial unbliss began, virtually all people with developmental disabilities had to be on Medicaid to obtain necessary medical care for the rest of their lives. Good jobs for them were unlikely, therefore, insurance coverage via an employer was unlikely. So the assumption probably was that they will, out of necessity, be both poor and on Medicaid. 

Sadly, though there have been some improvements, the unemployment/underemployment/sub-minimum wage possibilities are still with us. But the good news is that the Affordable Care Act is already a game changer for people with disabilities. Sons and daughters, if already covered under their parents' employer plans, can continue to be covered until they turn 26. (btw, Suggestion Box Issue No. 574: Can we extend that to 30 for children who have disabilities?)

That buys them eight more years to try to get a good job, to get a degree, to be an apprentice and learn a skill. Eight more years some of those young adults don't need Medicaid. Eight more years when they might not have to be impoverished. Yet. 

But yes, to do those things, they still need some supports. But let's not call them Waiver supports anymore. Ability Services maybe. Or The [insert corporate sponsor or name of large foundation-that-wants-to-help-defray-the-costs-of-this-program here] Supports. Whatever. And, lord knows, we don't need yet another agency involved or application to fill out for young adults in transition. By all means, let's not make this harder. 

By letting formerly-known-as Medicaid Waiver services go its own way, we can open the discussion about eligibility, when children and families could best benefit from services, and yes, funding. And, let's also open the discussion to means testing. (Readers, please don't flog me.) Some families can afford to pay for a portion of the services. I think it's important that those who can, do. 

Breaking up is hard to do. Sniff. But surely we can be amicable about this can't we?  For the sake of the children?

My Shrinking Boy: The Challenges of Maintaining a Healthy Weight on the ASD Spectrum

299.6! That's the celebrated number of the day. It's what appeared on the scale after son Fickle Fan's latest workout at the gym. And, yes, that's a GOOD number. It's what we're calling his sub-goal, and it's taken a long time to get there. But get there he did. 

Before all the health fanatics come out to pounce on me, yes, we know that's probably still what a physician might characterize as "morbidly obese," and, yes FF is still working on it. Thus the "sub" goal. But we're also extremely proud of him. He's lost at least 35 lbs. over the course of two years.

Slow process, and lots of weeks with the two steps forward, three back cha-cha. I know some of you out there understand. We have similar stories. The weight began to pile on when FF was about 9, when he began taking Abilify. (Note: I refuse to bad-mouth that drug--it was a life changer for FF and all of us; but yep, it came at hefty price. Ahem.) I don't know whether the med somehow physiologically causes weight gain or if it just causes the constant, never satisfied, all-consuming, ravenous hunger FF lives with, but the pile-on of pounds and a risk for diabetes is a nasty side-effect of that whole class of anti-psychotics.

I've read similar laments from other families. I've seen the photos of your teens on the autism spectrum who look a lot like FF. Big teddy bears. Or maybe grizzly bears. Teaching them to moderate their eating, encouraging them to exercise and getting them to step away from the video games is a huge challenge in the adolescent, young adult years. But it has to happen, because the alternative is a lifetime of bad habits and poor health.

So today, I watched FF get out of the car and head into the gym, and I noticed! Definite shrinking of that extra shelf he's been carrying around his waist for years. Good for him!

How has that happened? I wish I could just say it was just one thing, but it's really been a combination of approaches over the course of two years. The first was Weight Watchers. He attended meetings regularly for about a year, sitting on folding chairs amidst the mostly middle-aged women and listending to the pep talks. And though he just couldn't do the tracking that is essential to WW success, he did lose his first 25 pounds in the first six months at WW. Even more importantly, he learned a lot about the importance of lean protein, high fiber foods. (There's never a bag of chips sitting on top of our fridge anymore.) But despite the diet changes, quite a bit of that weight eventually came back anyway.

Beginning probably his sophomore year in high school, we also began weaning him off of Abilify (after the introduction of Intuniv). That too has been a very long, slow, careful process. For the past year, he's been taking 1/2 gram a day. (Have you ever tried to quarter those annoying little pills?) Finally, at 19, we've said buh-bye to Abilify.

But we're proudest of his newfound commitment to exercise. Since mid-January he's been working with a trainer at Anytime Fitness for just under an hour every week, and he pops into Anytime for two or three additional 30-40 minute workouts during the week. 

I can't say enough great things about Anytime Fitness, by the way. (Shameless plug, but no, I'm not being paid.) His trainer has been wonderful with him, teaching him the exercises, raising the expectation bar, and building his confidence. And she's willing to chat with him about sports--one of his big interests. Probably helps she comes from a large family. Plus he just likes being there. He's not intimidated, and we can just drop him off; he has his own key and knows exactly what to do when he gets in there. We were initially concerned that we would have to pay for two memberships plus an hourly wage to a peer buddy to workout with him, but he's fine on his own at Anytime. The staff and clients all accept him, and it's become a social activity. That's what community inclusion is all about.  

Soapbox Issue #647: Hey, researchers! I'd really like to see more of those dollars currently going into ridiculous cause studies diverted to effective healthy living strategies for young adults with autism (and their families). Talk amongst your funders!

Meanwhile, today's special number is 299.6. (Cue the Count from Sesame Street!)

An Asperger's Diagnosis in College: Girl Interrupted

We pretty much knew that son Fickle Fan, diagnosed with mild-to-moderate autism at the age of 3 1/2, would need some long-term supports and parental paving-of-the-way to successfully, safely progress from toddler to adult. But we haven't talked much about what happens when your student isn't actually identified as being on the spectrum until after high school. 

Enter Daughter Dearest. In her case, that happened after a disasterous first semester at her very nice, Midwestern private school of choice. This is the school that gave her a helpful scholarship and was pleased that she was interested in biology and had the ACT scores and transcripts to back it up. 

This is DD's story. It's a cautionary tale for families, for colleges, for high school guidance counselors, and for students themselves whose lives start coming apart at the seams after Mom and Dad unload the van and drive into the distance. 

If you've been a T in T reader for awhile, you'll remember that DD was diagnosed with obsessive compulsive disorder at age 11. For the most part it was under control with meds, though we had concerns on multiple fronts, especially in high school. But we were living in a smallish, rural community. There was not a pediatric psychiatrist or even a therapist familiar with OCD in young girls within a three hour drive of our home.  

The meds-only treatment approach, however, probably masked DD's Asperger's symptoms. Plus, it's common for girls on the spectrum to be missed--they tend to be somewhat more social than boys, don't always have some of the other obvious signs that boys on the spectrum have, and have learned to get by. And that's the problem. It's not until somewhere between middle school and college that many girls on the spectrum are identified, especially if they're higher functioning. 

But it's true that I had those ongoing concerns. We always said that DD leaned into the spectrum. Somewhat awkward social skills. Few friends; some years none at all. Voracious reader of fantasy/dragon literature (but couldn't seem to "grow out" of or branch into any other genre). Very quiet in the classroom, but capable of carrying out a loud, bombastic comedic role onstage. Pacing and self-talking (acting out scenes from her life) in her room (but not in public). Inability to prioritize. Inability to organize. Little interest in learning life skills. Despite her OCD and typical germaphobe issues, her room would've been a contender for an episode of "Hoarders." 

Big red flags began waving her senior year. We even had discussions about delaying her entrance for a semester or even a year. So if you're wondering, even just a little, here's what you need to know:

Lesson #1: If you have a student with "tendencies," get them tested by a reputable professional before they leave high school. It is unlikely that the school system will pay for this ("She's doing fine; she's on the honor roll.") so hopefully it will be covered by your insurance. In our case it was not. Find someone who has expertise testing adolescents on the spectrum and have them do a detailed analysis of your child's strengths and challenges. This was a huge eye-opener for us and helped DD and us better understand what she needed in terms of support. The tests also clued us in (duh!) to her high IQ. If we'd had this information about her particular challenges and the areas at which she excels, we might have been able to put her on a better path before she was left to fend for herself at lovely Midwestern college. As it was, we--DD, her psychiatrist, a therapist, and her parents--sputtered around for at least a year after the disastrous semester before we pursued the testing (or even knew she should be tested!). So diagnosis and comes-the-dawn moment took place at age 20.

Keep in mind that if your student begins having problems in college, it may be difficult to get them the help they need on campus. For many neurotypical students it's a real challenge to walk into a campus mental health center and talk with someone. If your student is on the spectrum, it may be even tougher for he or she to 1) recognize they have a problem, 2) make the call or walk into a counseling or campus mental health center to make an appointment and 3) actually TALK to someone about what's happening. And many college counseling or mental health centers are staffed by psychology grad students. Again, your student needs to be evaluated by a qualified professional who has experience adminstering a variety of intelligence tests and other evaluative instruments AND who is comfortable working with adolescents. 

Lesson #2: Depression--all too common among adolescents on the spectrum-- can be dangerous and life changing. Learn the signs.  After about a month at lovely Midwestern college, we saw problems arising. Lack of communication was number one on the list. She began avoiding texts, emails, and phone calls. It's not really worth trying to figure out what triggered the depression because by that time there were a number of contributing factors: a very tough schedule, roommates who made her feel awkward, DD's own inability to seek out help, and a pharmacy that didn't deliver her meds to the campus pharmacy as they were supposed to. Co-occuring conditions--depression, bi-polar disorder and excessive anxiety, among them--frequently arise in students on the spectrum during their adolescence or young adult years. It's extremely important to monitor our kids during these years (which may be tough to do from afar) and get treatment for them when they need it. 

Lesson #3: Insist on a private dorm room. I had pre-discussions with lovely Midwestern college about one of my major concerns: overcrowded dorm rooms. It's not uncommon these days to pack three or more freshman into a dorm room the size of a large walk in closet, something that was over-the-top stressful for DD, who's always had her own room. I had suggested a private room, which would have cost more, but we would have made it happen. DD, though, didn't think she'd have a problem and didn't want to draw attention to herself by making unusual demands. As a result, DD had little privacy and no chance to engage in the little self-calming rituals that help her get through each day. Private dorm rooms give our students needed sanctuary. By the time life in the dorm became intolerable DD was too embarrased to say anything, or talk to her RA about moving to another room, and she refused to let us intervene. It was only after we brought her home in December that we found out she'd been hiding out at the library or in the lounge down the hall until the wee hours of the mornings so that she wouldn't have to interact with her roommates, that she'd been physicaly ill for awhile, and that she had not been taking her medications regularly for weeks.

The alternative to the private dorm room, of course, is to live at home and commute to a nearby university or community college. Add in transportation, social isolation challenges, and parental dependence, accordingly and adjust as needed.

Lesson #4: Have your student sign a release of information form. At the ripe old age of 18, your student is an independent young adult and will be treated as such by the college they're attending. You, therefore, will not be entitled to any, ANY, information about your student. Doesn't matter if you pay the bills. Report cards, notices, tickets, any other communications will be delivered to your student who does not need to share them with you. The school is not actually allowed to give you any information unless your student has signed a release form. DD became quite good at shielding grades and progess (or lack thereof) from us, which only increased her shame and embarrasment and our inability to see what was really happening. After several semesters of this at both lovely Midwestern college and local community college, she agreed to sign the release form and knew that we would actually call the college retention office to check on her status in her classes. Which brings us to...

Lesson #5: For some of us, helicopter parenting is a life-saving necessity. Don't let the school, your student, or other parents make you feel ashamed of what you have to do to help your child on the spectrum. Unless they, too, have a child with HFA or Asperger's and have been where you are, they just won't get it. College is extremely important for many of our higher functioning students, but some just don't have all the skills in place yet to do it on their own. That doesn't mean they shouldn't be allowed to participate in postsecondary ed; it just means you may need to find the right supports to make it happen for them. That said, you can't overdo it. Your child has to learn life skills that will help he or she become more independent, so you'll gradually need to back off and take away the scaffolding. For some of us, that's a slow process; for others it's not as difficult. With the help of a therapist, find what works for you. 

Lesson #6: "Four years and out" does NOT necessarily apply to spectrum students. Thanks to mountains of student debt, universities around the country are now trying to encourage (read "push") students to complete their bachelor's degrees in four years (or even less--with summer tuition discounts for full-time students)--not that it's really helping, given rising tuition, the doubling of interest rates, and increasing credit demands for some majors. Ahem. (Okay, so I side-step now and then.) The point is that many, many students with higher functioning autism need to take a lighter schedule. One or two classes per semester will help them begin to understand their schedule and academic demands. Build on that as appropriate. Stop comparing your student to his peers who are taking 18 honors-level credits a semester. 


Lesson #7: A volunteer position or part-time job will help students build social and resume skills. This was tough at first for DD. After moving back home and trying to put humpty-dumpty's pieces back in place, DD was taking classes, but going nowhere and doing absolutely nothing else that didn't involve the spine of a fantasy novel or the glow of a computer screen. But because of her challenges and sub-basement level self-esteem, she didn't think she was capable of getting a job. At that point we turned to VR and a local employment provider, which helped her get her foot in the door. A year and a half later, she's working 12-15 hours a week at a new job (one she got on her own), learning new skills. I've heard of many students on the spectrum who graduate with a college degree and, years later, still don't have a job or are underemployed and undervalued. I think it's essential for our students to build job skills and explore career paths while they're in college. They need to be able to connect the dots to employment, or that degree may be nothing more than wall art.



So where does that bring DD? Leagues further than where she was three years ago, but still working on things. In addition to her job, she's now taken enough courses to apply for a transfer to another lovely Midwestern university, albeit one that's much closer to home. She now understands what she needs to thrive academically. She can get herself out of bed when she needs to (and oh you better believe that was a huge accomplishment). She drives, handles her own meds and refills, pays for her own gas and clothes, does her own laundry. All good. And she and her new therapist chink away at her OCD and Aspie challenges. More financial independence and responsibility, setting long-term goals for herself, and finding a career that jives with her interests are a few things on the to-do list. So, one more lesson...

Lesson #8: Setbacks are a part of the process. None of this is easy. There were times when we were at a complete loss and getting nowhere. But because students like DD can stumble and fall repeatedly, they can carry around a crushing amount of shame. It's really important to assure students that a bad semester, an unwritten paper, an inability to meet and talk with a professor does not mean permanent failure. People get second chances in life. Our students get multiple chances to pick themselves up (with help) and try, try, try again. 

If you're thinking about college for your student, there are an increasing number of programs with built in supports for students with high functioning autism. Warning: most are extremely expensive, but if that's not an issue for you, here are a few "thinking about it" sites to get you started. 

"Preparing for College: Tips for Students with HFA/Asperger's Syndrome"
Marshall University, WV--the College Program for Students with Asperger's 
College Internship Program
College Living Experience
AHEADD: Achieving in Higer Education

Fired: Another Lesson Learned

Son Fickle Fan lost his job a month ago. He was fired. I've been trying to figure out how to share that with all of you--this is my umpteenth attempt--without pointing fingers or giving you the wrong impression. Thus the lag in my posts. But this is a blog about our transition experiences and this qualifies as a dang-blasted transition experience, so there it is. 

It's been painful. When I started this blog, though, it was with the intent to talk about just how transition works for families and their young adult children. Or, sometimes, doesn't work. Transition is a tangled mish mash of sketchy services, piles of paperwork, agency denials, misinformation, and all too little funding. It's also a discovery process of learning and letting go and newfound independence. I think this was a little of both categories.

You don't need to know the whole sordid tale. Things hadn't been going well for months. And then a few weeks ago, while I was at work, I got the call. You know the one. The one from your son who rarely ever uses his cell phone. And just thirty minutes or so after dropping him off at work. This can't be good.

"Mom! (gasping and sobbing) Come quick! I'm in crisis. I got in a fight at work. The police are here."

That call. When I arrived, son Fickle Fan was sitting on the ground, outside the store, with his back up against the wall, crying, shaking, and terrified. It was heartwrenching. 

Long story short, no one was hurt, no charges were filed, but FF had lashed out physically and it was bad enough that the manager did not want him to ever come back. There are a lot of factors involved in the why this happened. The most painful part is that it could have been prevented. We've learned a lot about the need for management (and possibly co-worker) training, the need to help FF understand how to get help when he needs to work through a problem at work, the need for on-the-job support, and on and on. 

FF was devastated. And in a combo of self-protection and crumbling self-esteem, he's decided he does not want to work for now. He's going to focus on school. (More on that some other time.) We have to support him in his choices and help him explore new paths. As tough as that may be.

Probably the most concerning and most gut-churning lesson learned, though, is that once they hear about this episode, people immediately jump to the conclusion that FF is violent. It's so wrong and so unfair, but I understand where that's coming from. FF is a big guy, a teenager, and he has autism. Three strikes. 

Last week, a disability services professional evaluating him for non-employment training asked FF about his job experiences. FF truthfully told her what had happened (TMI honesty being a common characteristic of high functioning autism). She left the room and came back with a release for us to sign, giving her permission to talk with his therapist. She said she couldn't put staff at risk who would be training him in close quarters. I was floored. She obviously had an image of a different person in her mind than the FF I know. I willingly told her to call the therapist, who, I know, will back me up. I felt like crying all afternoon after that appointment.

Here's the thing: Those three strikes I mentioned above? All three are factors, but if he were just a big teenager, people would understand--they'd chalk it up to occasional anger issues and immaturity. A not yet developed pre-frontal cortex. Throw autism into that mix, though, and some people immediately jump to the could-be-a-violent-criminal conclusion. It's the hoodie of our world. 

Years ago, my husband and I were at a party thrown by some friends. I noticed a huge hole in the drywall of the kitchen and asked what had happened. With a wince, they admitted their teenage son had gotten angry and put his fist through the wall. At the time, I was shocked. But now I get it. I can assure you, though, that no one looked at this kid as a potential criminal; as I recall, he was pretty popular in high school. And, now grown, is he sitting behind bars somewhere?  Of course not! After finishing his master's degree, he got a very good job, married and has a family. His parents are very proud of him.

That nasty cocktail of emotion, adrenaline, and testosterone coursing through the veins of some teenage males whose brains are still developing can cause some seriously scary incidents. But we understand that they will mature; the incidents will become fewer as they enter their twenties. 

Does that mean we don't need to pay attention to the autism factor? Nope. The "zero-to sixty-in-no-time-flat anger problem when triggered by specific circumstances" (belittling, mocking, being physicially or emotionally backed into a corner) may be a manifestation of his teenage brain, but I the out-of-proportion reaction to those circumstances could still be autism. I'm told he'll mature and the anger will probably subside with age, but until then FF needs help with figuring out how to identify and escape those every-now-and-then situations before the volcanic eruption occurs. Thus the therapist. 

I don't think FF is the only teen with autism going through this problem. And he's certainly not the only teen who's also had anger issues while learning how to drive, work a first job, or take classes. Many, many children with autism who have tantrums and rages, grow to be teens who have fewer of those problems, but who still have them--occasionally. And many of those teens--so the experts tell me--grow to be young adults whose now-and-then anger issues have abated and who are able to live productive lives.

Still trying to make that happen. 

Change Is Not a 6-Letter Expletive

In the autism world, "change" is a dirty word. If this were Hogwarts, wizards would be whispering the ch-word as if it were He Who Must Not Be Named.  But if we expect the secondary transition years to be successful, we need to stop blaming Change for all the evils that befall the world. I'm here to tell you Change has gotten a bad rap. Framed, I tell ya! It's been framed!

Chad in his room, from MTV's Word of Jenks.

Why? Who did this to poor, little innocent Change? We did. Teachers, therapists and, yes, parents. We've been trying to protect (and maybe coddle?) our children on the spectrum who tend to take comfort in their routines. It's true, though: poor, little innocent Change does seem to be present at the scene of a number of meltdowns and explosions. Just watch what happens when you tell a 5-year-old ASD child who has Frosted Flakes every morning that you're all out and she'll need to make due with Lucky Charms. Or, those of you who've been watching MTVs World of Jenks this season saw how Chad, now a young man with autism, handled the news that he was moving away from his childhood home. (Not a fan of Jenks yet!!? Just watching Chad's year of transition is worth it. See if you can watch this past season on Hulu or catch up on Xfinity.) 

Okay, at first glance it looks like Change is doing a number on our kids, so it's no wonder we do everything we can to avoid it. We've even taught our children the drill. You can hear spectrum kids tell adults they don't like change; that they need things to stay the same. But change is a part of life. Unintentionally then, we've taught them that because of their inability to cope with change, kids with ASD can't live a broader life with more experiences. We let them and even encourage them to walk the same path even when it becomes a rut. 

But do we need to? I think we've oversimplified the issue for far too long. And we're pointing the finger at the wrong culprit. It isn't Change that should've been indicted. It's Loss. And in some instances Loss likes to hang out with Change--but not always. Sometimes Change brings along good friends, like Happiness, Excitement, Opportunity and Better Circumstances. 

When you think about it, transition IS change. That's what it's all about. Graduation, jobs, transportation, college, more independence, maybe some new roommates, and sometimes new housing. And, yes, Loss is there. Transition means saying goodbye to high school teachers, bus drivers, friends, and familiar environments. But I think it's possible to cushion the blow if you prepare students in transition for both Loss and for Change's good friends. And then celebrate the changes as they come. 

In the season finale of World of Jenks, Chad had to move with his parents, away from the home he grew up in--a devastating loss for him. After the move, however, he was able to sleep in his own room for the first time in his life. In that instance, Change brought along Opportunity for Growth. 

In our case, we discovered fairly early that major blow ups could be avoided in change situations if we (and teachers) fully explained to son Fickle Fan both whatever new thing would be occurring, as well as what would NOT be happening as a result of the change. If we didn't prepare FF for the loss, though, and he only discovered it after the change had occurred, it could set off a little boy Krakatoa. So, ideally, it would work like this: "This afternoon you'll be going to a school-wide assembly. That means that today we won't be going to the library as we normally would. Instead we'll go to the gym with the class and watch a puppet show." If we knew that losing library period was a big loss to him, we might also see if there was some way he could go the library right after lunch or the next day. 

But, please note, it was just as important not to sugar coat the loss or avoid telling him about what he would lose, as it was to put a positive spin on the good things that could result from the change. Sure. I can only relate our story and how the plot plays out for us. Every child is different, and your pages may not turn the same way. Many of our kids on the spectrum, however, are pretty intuitive and are capable of understanding much more than we give them credit for. Sometimes, we had to explain things visually with a diagram or flow chart. Not giving FF the full story in advance, though, only makes him feel blind sided and betrayed. And more likely to distrust future change.  

The lessons here that apply to (Indiana) middle school and high school transition are numerous: the diploma vs. certificate discussion; the Core 40 curriculum; End-of-Course Assessments and remedial courses; academics vs. work study courses; dropping out, graduating at 18, or staying in school until 22; college and testing; pursuing a new interest; participating in an extracurricular activity. All of those things bring change. Most also bring a certain amount of loss (time and freedom are two of the biggies) as well as possibilities or opportunities. 

Each of these situations had to be fully explored and explained. The message here: More information for students and families in middle school is definitely a good thing, so that they can prepare for the bad, the ugly, AND the good. In fact, family transition training would be very helpful--but that's another blog. 

Meanwhile, please, give Change a break. Take him off of the Top Ten ASD Criminals List and let him party with his good friends. Loss will probably be there too, but he can sit in the corner. 

Step Back, Mom! Or How I Became a Rhinoceras

A few weeks ago, I received an early Mother's Day present from 22-year-old Daughter Dearest. She  sat me down and after a deep breath, oh-so politely told me to back off. 

I think the actual exchange went something like this:

DD: (with a This-Is-Big portent and hesitency) Mom, I need to tell you something.

Me: (cautiously) Okaaaay, is this something you talked about with your therapist?

DD: Yes. 

Me: Alright, good. What is it?

DD: (slowly at first, but picking up steam) I need to start speaking up for myself more, so you need to stop doing it for me. I mean, you're really good at it, and I appreciate that, but I need to start talking for myself. The problem is that when you're with me and you take the lead in those situations, it makes me look incapable.

Me: (dumbfounded) You're absolutely right. I'm sorry if I tend to step in with doctors or advisors when we meet with them. 

DD: It's okay. It's just that you've always been good at knowing what questions to ask and what to say in those situations, but I need to learn how to do it for myself now.

Me: I'm okay with that. Really. And, in fact, I think you just handled that--talking to me--very well. Nice job, DD!...So, do you want me to make that call to your advisor about the career assessments, or do you want to do it on your own?

DD: (laughing and now realizing the responsibility she's taking on) I want to make the call, but it's okay for you to coach me so I know what to say. Okay?

Me: Absolutely!  


Definitely a shocker. About 7.8 on the Richter scale, actually. When we list DD's strengths, Avoiding Confrontation is right there holding first place. During those times when she does need to get her point across, she's usually passive aggressive to the nth degree. Just the opposite of her brother, who has no problem adovcating for himself, which he often does inappropriately, but he's certainly out front about it. 

We've always suspected DD was born with that retract-into-her-shell tendency, but it's possible that her Aspieness, her OCD, and growing up with a brother who spent a lot of time railing and gnashing against the world also hindered her abilty to learn to advocate for herself. 

Trouble is, those of us who are autism moms can become very skilled at advocacy. You discover it's a must-have skill early on. But after all of the IEP meetings, therapy sessions, appoinments with specialists, talks with well-meaning but completely untrained classroom volunteers, explanations to pee-wee league coaches, and run-ins with judgmental fellow shoppers in the aisles of the grocery store, you realize you've grown a Stand-Back, Kids, I've-Got-This shield. In fact, I suspect I've developed rhinoceras tendencies. Typically peaceful, but ready to charge whenever the situation arises. 

So now I find myself in the position--at least with DD--of retired rhinoceras. Which is really how it should be. Actually, not completely retired--I still need to provide a nudge now and then. 

When I look back at DD's little chat with me, I realize it was just a fantastic demonstration of effective, appropriate self-advocacy. No anger, no defensiveness. She was pretty calm. Complimented me while simultaneously telling me to step back. I have to say, it was a gosh darn, textbook example of how to put someone in their place. Even if the someone was me. 

Good for her. Good for her therapist for coaching her. Happy Mother's Day to all my fellow rhinoceri!