Kicking the End-of-Course Assessment Can!

Oh yes he did! Son Fickle Fan passed the Indiana Algebra ECA--on his fifth try, after 8 months of some pretty intensive tutoring.  His final score was a pretty comfortable margin above the passing mark of 564 and an increase of 65 points over his previous score. This was a monumental, scaling Everest, mega accomplishment, and we're extremely proud of him.

Again, for those of you not from our Hoosier homeland, passing both the Algebra ECA and the English 10 ECA is required for graduation in Indiana. Despite some pretty severe dysgraphia, he passed the English after a semester of remediation with some very helpful teachers. But not the algebra. Without passing, he would have been eligible to graduate with a "waiver," which would have still gotten him the degree, but it would have been with an asterisk: General Diploma*...*with a waiver. 


Admittedly, it doesn't make a heckuvalotta difference one way or another. By passing the ECAs and achieving a General Diploma, FF is eligible to attend Ivy Tech--Indiana's community college system--but he could also do that with the degree and waiver. With just a General Diploma, though, he's not eligible for Indiana 4-year universities, which all now require that a student graduate with either a Core 40 or Core 40 with Honors diploma. Because of his math issues, FF did not take advanced math or a third year of science and therefore doesn't meet the curriculum requirement for a Core 40 diploma. 


Passing the ECA for FF was more of a psychological victory. And, yes, we'll admit it, there's a little bit of "so there!" vindication in it for us too. FF has struggled with formal math instruction since 3rd grade, despite the fact that he's intelligent and seems to have a natural ability for some types of problem solving. But he's struggled mightily in other areas and has had serious regression every year in math. Some years it felt as if we were starting from scratch. Freshman year, when he had to take both algebra and algebra remediation, was a pressure cooker disaster for him. Six weeks into class the math teacher told his Resource teacher he would never pass the ECA and would never do better than a D in his class. We thought that was unfair given that his 8th grade test scores showed him only a few points below passing. Required remediation, which he did in Resource and online his sophomore and junior years, was just torture for him, and taking the test again and again was beating his head against the brick wall. 


It was our daughter's tutor, Phil, who approached us last year and said he thought he could help our son pass the test. We explained that FF had built up a lot of defenses and carried a lot of baggage with him when it came to math. But Phil asked if he could meet FF and talk to him about it. (Read my previous post, "A Tutor Tutorial," about why I think tutors are so important for our kids.) Granted this is not your ordinary tutor. Because Phil, too, is on the autism spectrum, he has a great deal of compassion, understanding and patience for students with ASD. He empowered FF, allowing FF to "hire" him and make decisions about how long tutoring would be or whether or not he would do homework (he didn't). On those days when FF had just had enough, Phil wouldn't take it personally. He not only taught FF quadratic equations, graphing, and how to use the calculator, he also taught him how to stick with something to achieve a goal. That's just huge. 


So here's my soapbox point: There are many other bright students with autism like FF who are struggling with high stakes exams and challenging courses. Some may even be considering dropping out. With the right supports in place--more Phils--they could be passing those ECAs and earning General and even Core 40 diplomas. Too many of our students are getting left behind, only to sit at home in the years after high school without jobs, with no friends, and with little to do beyond Madden football and Netflix.


Indiana recently announced a new goal. They'd like to see 60% of the adult Hoosier population with either a 2- or 4-year degree by 2025. Ironically, that announcement came out the same week that the CDC announced the 1 in 88 prevalence rates for autism spectrum disorders. That's a substantial chunk of the population. If they really want to boost the higher ed numbers, overhauling the way we support students with high functioning autism in both our high schools and our universities would be a very good place to start.  


Meanwhile, if you're a parent of an Indiana student who needs extra support in math, send me an email and I'll send you Phil's contact information. He says he's ready to make some more success stories. 

Testing for Speed

We hit a couple of  hot buttons tonight at the dinner table: 1) The infernal need for speed in standardized testing, and 2) the tortures of testing for students with Obsessive Compulsive Disorder. 

Today, son Fickle Fan completed Day One of his final shot at the Algebra End-of-Course Assessment (passing is required for an Indiana general diploma), and for the first time he's using a common test-taking strategy devised by his tutor to help him answer more questions. So that's what brought the subject up for discussion, but, as you can imagine, it's my OCD-Aspie Daughter Dearest that has A LOT to say about the issue. 


DD despises timed testing. She believes--and I completely agree with her--that speed testing on math and science tests is a completely male-initiated venture. We not-so-fondly recalled her 2nd grade timed multiplication tests. Students were not allowed to move on to other areas of math until they could flawlessly pass the timed test--30 problems in 3 minutes. That gave her 6 seconds per problem. Each time she would attempt the test, she would come home with half the problems completed--they were all correct, of course, but nevertheless, she was not permitted to learn any new material. After buckets of tears, I decided the test was ridiculous. Knowing that the teacher was giving out the very same copy of the test each time, I had DD memorize the 30 answers.  Next time she took the test, she just wrote down all the answers. Problem solved. Temporarily. 


This was five years before I realized that she had OCD. And 13 years before we began to suspect that Asperger's was also an issue. Long story short, we now know that DD is incredibly intelligent and excels at math--but NOT if she's working under the pressure of a clock. She has a much slower processing time than most people who also have her IQ.  


At dinner tonight her voice rose--it always does when she's passionate about an issue--when she described her frustration at standardized math and science tests, including her AP tests and the ACT. (She did very well on her ACT test, by the way; not so well on her chemistry AP.) "I knew all the answers, Mom. I just couldn't ever get all the problems finished."  


She went on to describe the agonies she goes through each time she reviews her answer sheet to detect patterns on the page, too many D answers in a row?, not enough As? "So then I'm sure I must've done something wrong, and I go through the test wondering where I messed up."


And then there's the issue of filling in the answer bubbles.  Is the oval filled in perfectly?  Maybe I've filled it in too dark.  I should erase that one and make it look better. That one is filled in uniformly. I need to fix that one too. Yikes!


It's painfully apparent now that DD should've had accommodations for extra time on tests and should have been coached in testing strategies to put her mind at ease. At the time, we had no idea. She was bright and wasn't the squeaky wheel in the family. Moreover, I don't know that she would have accepted accommodations then. She would have bristled at the very suggestion that she be treated any differently or be given any special consideration. (She confirms this.) Now, though, she understands the connection between her "issues" and her anxiety in a classroom and in testing situations, and that the accommodations are a must-have. 


If you're a parent of a student with a higher functioning autism spectrum disorder and/or OCD, be sure that your case conference team is listing accommodations needed for standardized testing. 


Also note that if your child received extended time for testing at school and both the disability and need for accommodations is documented by the school, your student may be able to use those accommodations during the ACT. Here's the ACT accommodations link for more information. The SAT also accepts accommodated testing for eligible students, but your student must first apply to the College Board. Talk to your guidance counselor about application requirements and procedures. Once a student is found eligible for accommodations on one of the College Board's tests, she/he does not need to apply for a second time. So if your student receives accommodations for the PSAT/NMSQT, he/she will still be eligible when it comes time to take the SAT. Here's the College Board's link to information on SAT accommodations.


And let's all put away our stopwatches, shall we? 

Pomp and Circumstanceless: Still Focusing on the Now

Less than one month to graduation. It's a bittersweet, heart tugging finale to a tale that seems to be petering out. No colorful explosive fireworks. No Pomp and Circumstance. No parties. Not even a cap and gown or senior picture.  


We believe in allowing son Fickle Fan to make many of his own decisions at this point, and this is one of them. He just doesn't want to dress up, stand in line wearing an uncomfortable hat and gown (that probably wouldn't fit him anyway), being watched by hundreds of people he doesn't know, and sitting in an auditorium for hours, listening to motivational speeches that aren't a part of his reality.  


I'm concerned that he may regret this decision years from now. Choosing not to attend your high school graduation is a pretty big non-event. I feel sorry that he won't get to experience that shared sense of accomplishment and joy when all his classmates receive their diplomas and throw their caps in the air (if that's even allowed here).  Will he miss that when he's 25 and he realizes what he actually let go by deciding not to participate? I don't know. It may be that he just won't ever care.


I care. But I think I understand. In addition to the I-just-don't-want-to-get-dressed-up component, I think a big part of his decision has to do with his thinking in the moment. After all, graduation is all about focusing on the future, and I don't think that's a skill/ability/emotion FF excels at. I've heard this before about some people on the autism spectrum. There's a tendency to focus on the now--now I want to play video games, now I want to eat, now I want to go outside. Now I want to be an Academy Award winning filmmaker. Certainly, there's a goal there, but it's a "now" goal--there is no patience for or understanding yet that there are steps that need to happen before one achieves the goal. That understanding may still happen, but we have a ways to go yet.  


And I think that missing key component--the knowledge of and ability to plan the trip--from point A to point Z--makes transition all the more difficult. 


But it's a process. We'll keep at it long after his peers have crossed the stage, moved their tassels, and had their parties. And we'll still celebrate FF's many, many accomplishments along the way. I don't need to hear Pomp and Circumstance or see him in a cap and gown to know how far he's come, what he's still capable of, and how much we love and appreciate him!

Special Needs Trusts

We are now the proud owners of a 3-inch black binder, neatly and nicely assembled, with a title page that says "Estate Planning Portfolio for Anne and Eric."  Thanks to our attorney, the binder is stuffed with our wills, financial documentation, files, communications and a CD that contains all of our banking and investment information and plans for our children. It also includes something known as a Special Needs Trust for Fickle Fan. It's a Major Step (capital letters) down the transition road, and one that I've avoided taking with every fiber of my being.  

Forewarning here:  I have absolutely no expertise in financial planning or the laws that go with it. I'll share our story and concerns here, and if that helps you take action, great!  But I'm not advising you to do exactly what we've done--do the research (talk to the Arc of Indiana--I've included the link, below) or an attorney.


Now that I can mark that one off the transition checklist, yes, I feel a sense of satisfaction and more responsible as a parent.  I won't feel quite so much as if I'm leaving my children in the lurch every time my husband and I are in an airplane together without them (which is amusing, in that it's happened all of twice that I can think of in their 21 and 18 years of existence--we don't live near family and finding someone willing and able to take on our kids, even for a weekend, has never been easy).  But the whole planning-for-their-future thing still makes me a little queasy because it's tied to the b word ("benefits"--we'll whisper it for now.)


So, other than the gut-wrenching who-will-care-for-them question, why, exactly, do you need a plan and a special needs trust rather than just a will? Maybe you have a kind, wealthy relative. Could you leave it up to them?  No. No. and No. Our children (mine and yours) will most likely need life-long services to support them, and in the majority of cases that means they'll need to be on federal benefits--Medicaid, Medicaid Waiver and/or Supplemental Security Income (SSI). There. I've said it. But couldn't you just pay for it yourself?  Maybe, for a short time; but it's not likely for a lifetime (yours AND your child's, mind you). Also, depending upon the state where you live, your child may not even be eligible for some services like housing programs, job training, and health care if they aren't receiving benefits. That's because the agencies that provide those services get reimbursed through benefit programs; there isn't always an out-of-pocket option available even if you could afford it.  


Services are connected to benefits, which are tied to your young adult son or daughter's income--essentially meaning they need to stay somewhat impoverished. An influx of income (from an inheritance or lottery winnings or a gift from a wealthy relative) can torpedo the support scaffolding you've so carefully put in place for your child. Oh no! In that event they would need to "spend down their income" (a nasty phrase) just as some senior citizens need to do to qualify for long-term care services. Services may need to be suspended until your child has spent the new funds to the point where they're again within federal benefit levels.


A special needs trust protects the services scaffolding and allows your adult child to remain eligible for benefits.  But benefits will only pay for things like housing, food and medical care. What about that vacation to Canada, a new microwave, a backyard grill, birthday gifts for Uncle Moe, Saturday dinners at Red Lobster, movie tickets, a must-have Indiana Colts jersey?  That's where the special needs trust comes in. Let's face it: You're handling all of that now.  When you die, the special needs trust and the person you've appointed to oversee the trust will ensure that your child is still able to buy dog food for Rover, take ukulele lessons, and  pay the cell phone bill.  You get the picture.  Without a special needs trust, our son FF would get food, health care and shelter. That's it. With a special needs trust he has a much better chance at living a life he'll enjoy.


So, yes, for us this was a monumental challenge, fraught with complexities:

• Our children have varying challenges that impact their strengths, challenges, and potentials.  
• We aren't millionaires and aren't expecting to win the lottery anytime soon.
• We're forced to take a wild stab at what their financial needs will be and, with that, what their capabilities might be. Will they be able to work full-time jobs?  Will they graduate from college?  
• We've fought hard all their lives to help them be independent and then we set up a trust--a sort of financial safety net for them.
• All of our family members have problems of their own. Setting up an estate plan means establishing a will, which means we have to make that decision. The big one. Who can possibly care for them, advocate for them, smooth the wrinkles from their lives as we've done when we're gone?  
• My husband lives in one state, we live in Hoosierland, most of our relatives live in another state.

Here's what I've learned in this process.  

• The plan is flexible.  As their lives change, so can the plan.
• We don't need to be millionaires (although that would certainly help).  A special needs trust can be funded upon your death with a life insurance policy that establishes the trust as the beneficiary. Trusts do cost money, however; there's usually a one-time enrollment fee, plus maintenance or consulting fees, and tax preparation fees once the trust is funded.  
• Thoughtful, wealthy relatives can still provide funds to your child, but they need to give the money to the special needs trust, and as embarrassing as it may be, you may need to  explain that to them in a letter.  
• The Arc of Indiana's Master Trust webpage is an invaluable source of information on trusts. You can set up a trust for your loved one through the Arc, which is respected, trusted and less expensive. We ultimately opted to go with a private attorney because of the potential three-state complexity of our situation.  Even so, the Arc's resources and expertise were very helpful to us. Melissa Justice of the Arc does trust presentations throughout the state, and there are upcoming presentations in Gary, LaFayette, Indianapolis, and Bloomington. Go, listen, ask questions--even if your child is very young!
• Though the reality is that FF may be dependent on state and federal benefits, the special needs trust will help to ensure his independence when we pass away. 
• Planning needs to extend beyond our generation. Appointing siblings as guardians or trust managers may be a good option now, but what about when they're in their 70s or 80s?  It's good to have a back-up plan in place. (Nieces and nephews?)
• It helps to have a spouse like mine, who's not only good at but really enjoys the bean counting aspect of retirement planning.

So I feel better. We still need to do some pow-wows with family to let them know what to expect. Still makes me squirm.

Next up, we'll deal with guardianship, another Major Step. Happy planning, everyone.  .

Now What? Secondary Transition Resources

I believe in one-stop resource shopping whenever possible.  In the wonderful world of transition to life after high school there are a lot of decisions to be made, options to choose, and pathways to ultimately follow.  And that means research.


But rather than have you do the red-tape runaround at your child's high school guidance department, your local library, or even a couple of hundred different Google searches (how many different ways can you say "secondary transition for students with disabilities"?), I have another option for you: Stay seated and breathe. Then click here. That's a link to "Now What? Resources for Life After High School."  It's a 5"x8" two-sided card, chalk full of links to websites as well as Indiana and national organizations that specialize in employment, college preparation, and community living for people with disabilities.


"Now What?" is a publication of the Center on Community Living and Careers (CCLC) at the Indiana Institute on Disability and Community. True confessions: I work at CCLC--ironic isn't it, given that I have two children in the midst of transition?--but I'm not a transition expert (although I obviously have some experience living on the transition front lines for the past several years). I work in communications.  But I have a number of colleagues who excel at this sort of stuff. We put together "Now What?" for high school transition fairs around the state.  It's not an exhaustive list, but it includes a lot of the essentials.


Among the links on the "Now What?" card you should really check out: Is College Right for You? Setting Goals and Taking Action, JobTIPS, and the Job Accommodation Network.  There are more; those are just the highlights.


I would also highly recommend the Transition Toolkit from Autism Speaks.  Toolkits are free, contain information customized for your state, and are full of information about things your child needs to know as they make the transition leap. Autism Speaks will send you a Toolkit--one per family of a child (between ages 14 and 22) with autism--or you can download selections or the whole Toolkit from the Autism Speaks website. 


As you and your child work on goal setting, by the way, you don't necessarily pick one goal, or one dream, or one path.  Who does that?? Most of us participate in our communities, vote, volunteer, attend church, exercise, meet friends for dinner, and much more. Some of us take training classes, get a college degree, and/or explore continuing education. Many of us also work in full- or part-time jobs--and many of us have had not only different jobs, but have taken some pretty meandering turns in life, exploring more than one career.  


We're not automatons, wound up in the back with a key, and then set down to amble down one path only--postsecondary education, employment, or community life.  Neither are our children with disabilities. They shouldn't be made to choose just one avenue for their transition IEP. I like the combo approach.  Not to sound all Martha Stewart-ish, but more than one goal, more than one pathway to explore is a good thing! 


If you know of a transition resource treasure trove or even a particular website that's been helpful to you or your family, don't be shy: Please share with your comments below!