Shearing the Sheep: A Guy Haircut

The testosteronish magazine collection at Big League haircuts--the only place FF will go for a follicle overhaul.  It's one of those places drenched in sports, with a television blaring the game of choice at each cutting station. Big change from the salon with a gaggle of hairdressers and concerned customers crowding around my screaming-bloody-murder 4 year old, who was not only experiencing extreme sensory overload but probably also thought he was about to be beheaded. 
Daughter Dearest remembers that following that incident and for several years afterward, we would prop up FF on a pile of couch cushions in the middle of floor and in front of the TV, with a sheet wrapped around his shoulders and something he loved to eat (preferably not sticky) occupying his hands, while one of us would circle around him and clip as much as possible as fast as we could. It was never pretty.
For those of you with little ones on the autism spectrum who are going through that issue--1) find a salon that specializes in kid cuts, with lots of videos and tons of distractions, and 2) it gets better. It's not his favorite activity, but now that he's 18, FF tolerates the cut AND is beginning to recognize that it's important for appearance, job interviews, and general hygiene.

.

Hired!

This past Monday, son Fickle Fan put on his new khakis, his two-toned blue polo shirt, and his size 16 Sketchers, and headed off to work. Yes, work! Employment, labor, a job, the daily grind. The place from whence the bacon comes. 

With the help of his employment consultant at Stone Belt, FF interviewed at Hobby Lobby two weeks ago and landed a part-time position in the stock room. A week ago Thursday he attended a training session and signed all the necessary paperwork, and last week he worked a 4 hour and a 6 1/2 hour shift. He was one tired, but happy hombre.

The Pilgrims and Powhatans may have started the giving thanks tradition, but let me tell you, they got nothin' on us. Just days before Thanksgiving, we are so grateful to:

• Stone Belt, for its continued support;
• his Stone Belt employment consultant, Delyn, for slogging through all of the online applications,for knowing who to call, and for taking the time to get to know FF;
• Indiana Vocational Rehabilitation, for making it possible for FF to work with Stone Belt;
• Hobby Lobby, for being the kind of company willing to take a chance;
• to Hobby Lobby's managers, for saying yes to Delyn, and for starting slowly and not throwing him to the wolves on Black Friday;
• to Bloomington Transit for putting a bus stop right in front of Hobby Lobby (we're still practicing bus riding);
• and to FF--for stepping up and making it happen.  

FF's days at Hobby Lobby will be spent unpacking boxes and stocking shelves. Initially, he'll be supported by Delyn, acting as his job coach, who will back him up as he learns new skills and know when to back away as he learns to stand on his own two feet. (Great little animated video here, by the way, on how job coaching works in supported employment.)

Why would Hobby Lobby want to take a chance, giving a first job to an 18-year-old with high functioning autism who is somewhat awkward (but eager), has some pretty limiting fine motor skills, and who gives away the ending to Skyfall to a co-worker on his first day on the job? Sure there's always the altruistic "It's the right thing to do" response, but I think there's probably a more multifaceted answer to that question. First, this probably isn't the first time Hobby Lobby has hired a person with disabilities and they've probably learned a few things along the way.  

• In general people with disabilities make pretty good employees, in that they're dependable, loyal, and productive. 
• There are a number of incentives available to companies who hire employees with disabilities, including tax credits and training programs.
• Hiring an entry level employee referred from VR or a local employment consultant means the company didn't have to spend as much money recruiting applicants for that position.
• The disability community is large when you add family members and friends, which means by hiring someone with a disability, you may have  just broadened your customer base. (Feel the need to go shopping?  Hobby Lobby has 525 stores in 42 states--or just click here. And, no, they're not paying me to put in the promo!)
• Employees with disabilities can be supported by job coaches and an agency of people with expertise in training, accommodating, communicating with and successfully including people with disabilities. In other words, FF comes backed up by a pretty deep bench. 

He also comes with a couple of skills of his own that could help Hobby Lobby. Need something off a top shelf? He's 6'5" and has quite the wingspan. Can't remember what item goes where?  Give him a few months and get him interested, and chances are FF will be able to recite stock numbers and shelf locations with ease. He's got one of those memories. 

I'm sure there are things that we'll have to work through. Rest assured, the Mom Alert System is not switched off; it remains at DEFCON Yellow. But for now I'll hold down the worries about the social stuff, how easily he could annoy a co-worker, his low tolerance for frustration, how quickly he becomes bored of mundane tasks. For now, I'll do the Scarlett O'Hara and think about those things tomorrow, because today I'm smiling and doing the happy dance.

He. Has. A. Job! 

Taking a New Look at Medications in the Transition Years

What a difference a med makes--even in transition.

DD holding the information insert to one of
FF's medications.

Okay, let's stop right there for a moment. I know there's a group of fellow autism parents out there who are ready to pounce on me. "Any or even all medications are bad business." "People with autism shouldn't be on medications." "You're torturing your child with dangerous chemicals." Yep.  Been there--when our son was 6 years old. 

The real fact, though, is that autism is a pervasive, chronic medical condition--it affects aspects of his whole being (physical, mental, sensory and social) and it's not curable (though we keep hoping). You wouldn't pull meds away from a person with diabetes or asthma or schizophrenia. More facts: Without meds, FF would never have made the progress he's made. He would have been confined to a "self-contained" classroom, could have been sent to a school outside our district for students with serious behavior disorders, and would probably have spent even more time in restraint than he already did. 

As all autism parents know, finding the right meds or right combination of meds to address the frustrating, battle zone, and water torture symptoms isn't always easy. Takes a lot of time (and co-pays). Watching a promising med erupt into side-effects that only intensify the anxiety, agitation, distractability, irritation, ticing and aggression is disheartening. Putting a whole family through that process is exhausting and sometimes frightening. 

But when your doctor finally finds the right med or combination, it's a gift. FF's doors and windows opened to the world and where there was darkness we finally saw light. Really. It was that powerful.  

So why is this a transition issue?  Med tweaking--officially known as medication management--is the ongoing process of monitoring medications and their dosages. Doctors work with parents on this throughout a child's life, but I think it may especially be an issue post puberty and during the transition years. 

That doesn't mean I'm suggesting that kids in transition should add new drugs or increase the dosage of their existing meds. I am NOT a doctor. I'm just saying there are multiple factors--physical and environmental--that may influence a young adult's successful functioning in transition. An increase in height and weight, for instance, that may affect drug efficacy. Changing hormones. Extreme stress due to any number of causes. It's all something parents and physicians need to keep an eye on--especially since so many of our young adults on the spectrum can get side-swiped and become completely derailed by depression.

Both of my children have required either a complete med change or a dosage change post high school.  

Two weeks ago I was at my hit-the-wall stage. FF's complaining, irritation, intolerance for the slow pace of positive change in his life, and his tendency to blame me for everything--school, few supports, lack of friends, no transportation, Republicans (oh, you have no idea!), and constant boredom--had left me verbally battered. We've frequently described FF as verbally viscious and me as his verbal punching bag. That tendency has waxed and waned through the years, but since this past spring it's just escalated. 

His psychiatrist was hesitant this summer to do anything about it, chalking it up to transition anxiety and frustration. I completely agreed; I really dislike increasing his medication and prefer to ride out a storm or make needed life changes to avoid triggers or address issues. But by fall I was shell shocked.  

Last week we increased his anti-anxiety med, and we're now all breathing easier. Most importantly, so is FF. He's SO much more affable, conversational and just darn likable. It's always after we see the clouds part, though, that I ask myself why we waited so long. In fact, I wonder if we had done this in February, if FF would've been more likely to participate in things like prom and graduation. Sigh.  

Beyond med management, of course, there's another transition issue here: self-management of medications and health care in general, especially for young adults with disabilities who are higher functioning. There are a lot of challenges and independent living skills involved there. And although both our children are at the higher end of the spectrum, they're very different, so helping them learn has been two separate projects. I'll tackle the health care/medication management self-care subject in another post.  

The Transition Checklist for Change

Quoting Gilbert and Sullivan, "I've got a little list. I've got a little list." (Works better if you sing it or at least hum along.)  

Check marks this past couple of weeks decorated the following transition to-do items:

• Met with Easter Seals Crossroads assistive tech department for an evaluation to assess fine motor skills and determine what software and hardware could be helpful for college classes requiring writing; for executive function support; and, possibly, for on-the-job supports. Awaiting their recommendations. (Paying out of pocket.)

• Met with new therapist to help son Fickle Fan deal with rigid, restrictive thinking;despair over lack of friends; frustration and extreme irritability and outrage; and obsessive thinking leading to anxiety. (Paid for through husband's health insurance.)

• Met with psychiatrist. See above. (Paid for through husband's health insurance.)

• Increased dosage of anti-anxiety med, resulting in much more relaxed boy and parents. (Paid for through husband's health insurance.)

• Daughter Dearest also met with her therapist. Definitely making progress. Yea! (Paid for through husband's health insurance.)

• Encouraged DD to seek out volunteer opportunities. She's working on it. Still need to follow up.

• Took FF to mock interview session. Kinda like speed dating--several local companies send human resource reps to spend 5-10 minutes talking with potential applicants so they can get some practice interviewing. (VR/employment provider support.)

• Took FF to his first actual interview, where he was again assisted by his employment consultant. (VR/employment provider support.)

• For the first time, 21-year-old DD went out to the bars with her friend and friends of friends. Worried but grateful parents waited up till 2:45 a.m. Thank you to the the tech engineers who invented texting for the ability to send and receive unobtrusive text assurances. We may be among the very few parents, btw, who are HAPPY to see their daughter go out bar hopping--social activity in a typical peer setting, yes! Also helps that one of the silver linings of the combo OCD and Asperger's is that she has no interest in alcohol, so that part we don't need to worry about. Like the parents of any other young adult daughter, though, we will continue to worry about the behavior of any inebriated idiots she may come into  contact with during these occasional outings. 

• Participated in bus training with FF and the local transit authority. Met with trainer, discussed shoulds and should nots of riding the buses, figured out how to read the system map and schedules. Then practiced riding the bus nearest our house, which, amazingly, runs right up to the door of the business he interviewed with! (No charge for training--a regular service of the transit system!!)

• Met with academic advisor at Ivy Tech. Though FF still has a good grade in his one class, the next class he takes should be a writing class. Big problemo given his dysgraphia. We're hoping that Crossroads training (see above) will help him with that. 

• DD also met with her academic advisor and signed up for two spring courses. After successful completion of those, she'll have enough credits to transfer to IU. (Neither FF or DD qualifies for financial aid.)

• DD met with her biology tutor. Going well. Still has an A. (Out-of-pocket.)

• FF went out with a 19-year-old son of a friend. We pay him out-of-pocket to take FF out to dinner, to the movies or wherever. 

• Covered more territory with FF in the Indiana BMV's Rules of the Road booklet. Wants to take the written test and see if he can take drivers training--though he knows he may not be able to drive and that Crossroads would probably need to do the training and eventually assess his readiness to drive. (That would also be out-of-pocket, I'm sure.)

All this took place in the last two weeks. Transition takes a pretty big investment of time (and, in our case, money.)

FF's biggest complaint in the past couple of months? Change is not happening fast enough. Hmmm. Really!??

Gracefully Leaving a Job: A New Skill to Learn

After a year at the cash register, Daughter Dearest is quitting her job at Kohl's. And it'll be okay. 

I haven't written about DD's exploits in awhile, mostly because she's doing fairly well. For the most part, no news is good news. But this IS Two in Transition, and though she's not always the squeakiest wheel, DD is wending her way through the chutes and ladders of her world too. For those of you who are just joining us, meet DD. All caught up now?

After getting an A in a summer early art history course that required a ridiculous amount of memorization ("Oh, I know that one! Tile with arabesque decoration, 15th century Ottoman, Anatolia, carved, glaze painted and guilded earthenware!), DD is now taking two academic courses and a science lab at Ivy Tech. Plus her job at Kohl's. She's learning to balance and spin the demands of multiple plates pretty well. Having a tutor for biology helps with her focus and preparation. All good. 

The problem is that she just can't face the loss of Thanksgiving with family up north and a holiday season with very long hours listening to carols from Taylor Swift (who seems to be the ambiance wizard's favorite songstress to pipe in over the PA) while she does her best to redeem Kohl's Cash coupons as fast as her scanner can beep, all while she's prepping for final exams. Too. Much. Stress. 

She's been looking (sort of) for a non-retail position, but it's been slim pickins. So rather than push her into another Black Friday (she survived, but barely), we're supporting her decision to leave Kohl's and get another job after winter break.  

As you can imagine, for a person with both Aspergers and OCD, there's been some strategizing involved with just how and when to give notice and leave gracefully. Yesterday, though, DD and her dad (he of the human resources persuasion) wrote a very nice letter of resignation thanking Kohl's for her first job, for the skills she's gained and for the boost to her confidence. In the letter, she gave them two week's notice, but said she could be flexible if they needed her to work another shift or two before the next schedule is posted.  

DD didn't give a reason for leaving. If anyone asked, we told her she could truthfully say it was because of school demands.

So like before when she needed to advocate for herself for shorter hours (you can read about that one here), DD sat in the parking lot, taking deep breaths, trying to steady her nerves for several minutes. And again, she said, it took all of five seconds. The manager took her letter, said she'd make sure it got to the scheduler and that was it. Employees come and go at Kohl's. Not a big surprise. And once again, the world began spinning on its axis. 

I'm a little concerned about too much free time, so I'm pushing the volunteering button, at least until she gets another job.  We'll see how that turns out. Meanwhile, Kohl's has been a very good first gig. They trained her and had her volunteering with other staffers her first month there. She learned how to respond in a variety of situations with customers. She got to laugh with other staff at the absurdity of life behind a cash register. We're grateful for all Kohl's has done for her, but it's time for DD to move on. Gracefully. No harm, no foul, no bridges burned. 

A Day at the BMV: Getting a State ID Card

Son Fickle Fan takes after his dad--he's somewhat of a political junky. Not surprisingly, FF is looking forward to voting for the first time on November 6. To make that possible, he spent some time at the Indiana Bureau of Motor Vehicles in May, getting his state ID card. I'm not going to get into the controversy of voter identification laws in this blog post, but the fact is that Indiana now requires ID at the precinct before they'll let you have a ballot. FF, though he's now 18, doesn't have a driver's license, thus the need for an alternative.  

This is another one of those Major Steps along the transition road. In addition to exercising his voter rights, there are other reasons for having an official ID, including opening a bank account, writing checks, filling out some job applications, enrolling in courses and other instances where he would need to have verification of his identity. 

Was it difficult to get one? Nope, but it takes some preparation, so please first check out the BMV website, especially the section listing which documents you’ll need to have with you to apply for a Secure ID.  There’s a handy little checklist they’ll give you on the site.  Also note that if you’ve never had a driver’s license or ID from the Indiana BMV in the past, you need to apply for a Secure ID. (There is also something known as a non-Secure ID, but it’s only given to people who already have a license or ID but who don’t have their Social Security card or documentation necessary to prove Indiana residence. You can still vote with a non-Secure ID.) According to the BMV, “A Secure ID meets federal government requirements for driver’s licenses, identification cards and permits.”

So here’s what you need to bring with you:

• a document proving identity--usually a Passport or a certified copy of a birth certificate;
• a document proving Social Security number (preferably a Social Security card, a W-2 form, or a paystub showing both the applicant's name and SS number)
• a document proving lawful status in the United States (the Passport or birth certificate will also work for this); and
• two documents proving Indiana residency.

It's the two documents proving Indiana residency that were the challenge for FF. After all, he doesn't pay bills yet, doesn't have a job, and didn't have a voter registration card or any of the other suggested documentation (there's a list on the BMV site). However, you can submit documentation on behalf of someone with a disability (the BMV uses the term "incapacitated," which I detest!) if you have legal guardianship or if you are a legal caregiver who lives with the applicant and you are at least 18 years old. So, in our case, I needed to sign an Indiana Residency Affidavit for FF and also show my driver's license, my birth certificate (or Passport), two documents proving my Indiana residency and a letter proving legal guardianship. Thank heavens, you can leave the partridge in a pear tree at home. 

Unlike a driver's license, there is no fee charged for obtaining a Secure ID.

My biggest fear was that we would need to wait for hours in long lines or sit forever in torturous folding chairs, waiting for our number to be called--the usual BMV nightmare. Fortunately, we went on a Tuesday morning, so it wasn't incredibly busy. My husband was also with me in case FF needed to go out for a walk or a break, but the wait was actually very short.

I really only had four relatively minor complaints about the process, which I'll share with you here, only so that you'll know what could happen and how to prepare accordingly if you're also planning the trip to your local BMV. 

1. The BMV staffer assisting us, though very nice, kept having problems with his data entry, which meant that FF had to have his picture retaken three times and the guy had to re-enter all of his information three separate times, until a supervisor finally came to the rescue. I was incredibly impressed with FF's patience and composure that day, because he usually hates waiting and has very little tolerance for repetition.
2. FF also has terrible dysgraphia, so it's difficult for him to sign his name in small spaces. For the ID, he needed to sign his name on one of those electronic keypads, which a) was very small and didn't give him enough room to sign and b) kept timing out because when he does sign his name, FF is very slow and deliberate about it. As it was, the BMV staffer said it really didn't matter, so he only has his first name, not his full signature, on the ID. That concerns me, because I don't know if a first-name only John Hancock will be accepted in the event a store clerk or bank teller needs to check his signature against his ID. 
3. As part of the process of obtaining a first ID or driver's license, the BMV is supposed to also allow you to register to vote and--if you're male and between the ages of 18 and 25--register for Selective Service. Voter registration was easy, but for some reason the BMV's computer system didn't trigger the Selective Service question that would've allowed FF to register. (And, yes, you must still register for Selective Service even if you have a disability.) We even asked the staffer about it. He knew it should have come up on their screens, but he and his supervisor didn't know why it didn't come up, and they couldn't register him manually. Not a big deal--we did it online later that week--but it should have been part of the ID process. 
4. And oh those terrible photos! I'm not blaming this one on the BMV.  In Hoosierland, you are no longer allowed to smile, showing your teeth, when they snap your pic. Unfortunately, FF interpreted the "don't smile" directive to mean "scowl and look angry." It would never occur to him that it was even possible to not smile and look pleasant at the same time. We should have prepared him for that one by doing some mugging in the mirror beforehand.

The ID came in the mail in about a week. Sadly, it shows a menacing FF with a first-name only scrawl. Makes him look far more disabled than he really is. Sigh. But he now has it in his wallet, which he's learning to carry with him whenever he leaves the house, and he's had the chance to use his ID several times over the summer. 

What about an actual driver's license? Ah, now that's another blog for another day.

Meandering Through the Medicaid Minefield

Benefits make me a little squeamish.  I’ve always thought it best to side-step the issue whenever possible. I’m not sure, though, that when you have two children in transition you can avoid stepping in the benefits minefield, fraught with its complexity and controversy.  Add to that an election year when both Medicaid and Medicare could figure prominently in the decision of who sits in the Oval Office or at a desk in the Capitol or downtown Indy, and I figure no matter what I have to say…Boom! 

So here’s a little of our tiptoe through the minefield this summer.

Our family’s personal involvement with benefits is minimal at best.  Son FF with autism, now 18, was diagnosed at 3 ½, but, given our income—in the Midwest we would probably be considered mid-to upper middle class—we knew he would never qualify for federal or state benefits to supplement his care.  We never had early intervention. We paid for additional speech services, some OT, high school evaluations, and even his psychiatric care and medication management out of our own pockets.  None of that was covered under my husband’s health insurance. (And I, of course, left my job to coordinate the therapy and extra care FF needed.) That meant we struggled to find appropriate services for him at times, because many supports and services for families with children who have disabilities are only dealt out to those who have Medicaid or who are on the Medicaid waiver.  It meant no behavior supports at a time when we desperately needed them. 

  

And, oh, we sooo needed those services. So we added ourselves to the new waiver waiting list in Illinois, and when we moved to Indiana, we started over again at the bottom of the waiting list, which was expected to be 10-12 years.  When FF was young, I was told at an autism conference that waivers were a way for states to widen the net and extend needed services to middle and upper income families as well. So, okay, I told myself, we would wait, and when his number came up at least then he would have some supports.

We were not really worried about Medicaid in the health care sense of the word yet for him yet. After all, thanks to the Affordable Care Act (Boom! A controversial explosion!), he now has health care coverage under my husband’s new (much better) health plan until he’s 26. Whew! No need to apply for Medicaid any time soon, we thought.

So this year FF turned 18, graduated from school and applied for Vocational Rehabilitation Services (we’ll get into that another time). It’s now pretty evident that he’ll need extended follow-along services for employment.  Without follow-along he will only be eligible for 90 days of job coaching services from our provider after the day he is employed. (He does, however, have ”job seeking” services and supports while he looks for a job.) But that’s not much for a person who struggles with emotion, frustration, and with saying the appropriate thing. Without the right workplace supports, I have Mom Worry that ranges from he won’t be able to stay in a job to I’ll get a call from a police officer some day.

But, uh oh. Turns out that follow-along supports are paid for with Medicaid funds. (Boom!) FF needs to apply for Medicaid. Sigh. We’re not happy about having to keep him impoverished at a time when he’s looking for a job and when he’s just beginning to learn basic money management skills (he has a very small checking and savings account) (Boom!). However, people with disabilities are eligible only if their assets are less than $1,500. Go figure.  “Get a job, but you can’t earn money, FF. We know you just got a checking and savings account so that we could teach you some independent financial skills, but oops, that will have to wait, because now you need to be poor, maybe for the rest of your life.” Yes, this is painful for us. But he needs the follow-along so okay, we thought, we’ll apply.

Boom! We have a 529 educational savings plan in our name with FF as the beneficiary, making him ineligible—that was the first ruling.  We started the 529 plan, by the way, based on recommendations we received at an autism conference when FF was young. Particularly because FF was high functioning and we could not predict whether he would be able to attend college or not, a 529 plan could be used to save for college, or if our son could not go to college, we could cash out the savings, pay the 10% penalty, but still have the savings to use for his care—rent for an apartment maybe, transportation needs, a personal care assistant.

Heartsick, I delivered the bad news to our provider. But meanwhile, and coincidentally, we were contacted by the Bureau of Developmental Disability Services (BDDS). At 18, FF was now targeted for the Medicaid waiver, specifically the Support Services Waiver (as of September 1, now the Family Supports Waiver). This is fantastic! And, says our provider, we should check to see if the Support Services Waiver will pay for his follow along. It might mean that all or most of his waiver funding will need to be used on follow-along, but okay. Next day FF and I meet with BDDS. But lo and behold--Boom!--if you’ve been denied eligibility for Medicaid (because of the 529 plan), you’re also denied the waiver.

What??!! Sure enough, FF needs to also be impoverished to qualify for waiver services. Boom!  That concept of “waiver” as a wider net is true in some states, not in others. Not in Indiana. Indiana and many other states adhere to what I’ve learned is the more common definition of Medicaid waiver in which eligible families are “waiving” institutional care and opting instead for selected community-based services that would help them care for their loved one in their homes. The word eligible looms large there. No Medicaid, no waiver.

Three weeks after FSSA denied FF eligibility, though, they phoned to say they’d changed their ruling, and that a 529 plan or Coverdell educational savings plan held by a parent would not be counted against the person with the disability—even if that person is the beneficiary. FSSA suggested we reapply.  Moob! (Reverse boom.) At what cost, though?  I admit to being torn.  My husband, not so much. He’s pretty sure we should steer clear of Medicaid, given that the services would be very minimal and we would be teaching FF all the wrong financial stability lessons. Can we actually afford to find our own follow-along care and pay for it out of pocket?  I don’t know. We're on shaky ground here and choosing our next steps carefully.

Next up, Social Security.  Boom!

Top Five Things My Son with High Functioning Autism Needs to Succeed in College

Before you read this post, please be aware that I do understand the differences between entitlement to services and supports in k-12 education for students with disabilities vs. eligibility for accommodations in college.  (For those of you who are parents of younger children or who don't dwell in our world on regular basis, here are the basics on that.) Basically, students in k-12--by law--are accorded a number of supports and services that help make school more accessible for them. In college, not so much. Postsecondary education requires that students be able to meet the requirements all other students must meet and that they advocate for themselves for accommodations (like extra time on tests or the use of assistive technology in the classroom that could help with essays or notetaking). 

Trouble is, "advocating for themselves" is one of the core challenges that many, if not most, students with autism (and their families) struggle with on a daily basis. Comes with the territory. So even if they've already passed the entrance exams, have a good grade point, and are capable of understanding college-level material, if they can't walk into the office of disability services and ask for the specific services that would help them, they're at a distinct disadvantage. 

In order for him to be successful in college, though, our son FF needs more than simple accommodations. And he's not alone. That "one-in-88" diagnosis so many of us in the autism community are now shouting from whatever soapbox we can stand on, also means that there are a number of students now graduating from our nation's high schools who walk out the door their senior year with a diploma and who still have Asperger's or high functioning autism. Surprise! They weren't cured. (Yes, I'm joking.) 

Trouble is, we have a little perfect storm brewing on the horizon: increasing numbers of students with autism entering college--primarily community colleges--and faculty, staff and administrators, including those in offices of disability services, who are woefully unprepared for these students. I suspect many of those professionals don't necessarily feel the need to be prepared. After all, the onus is now on the student; it's the student's responsibility to acclimate to college life, perform well academically, and practice self-determination skills. While that's true in part, I think it's tremendously short-sighted and sets these students (and colleges) up for frustration and failure. It's a big loss, since so many of these students have so much to contribute. 

It's true, though, that just as in the neurotypical world, not all students with autism are savants and geniuses. Many of them, FF included, fall into that capable-but-not-excelling, middle-of-the-road category (at least right now). You can debate whether or not he deserves to be in college; he and thousands of other Indiana community college freshman are in the same boat, floating on a sea of okay grades and positive end-of-course assessment scores, but for a variety of reasons, still in the community college harbor and not out on the state college or other 4-year college ocean. The point is that he recognizes college can give him opportunities--better jobs and a possible career, certainly, but more importantly to him right now, a chance to be with "regular" kids his age. College, more than anything, will allow him to continue to be in the real world with his peers, at least for awhile longer. Look at that sans the autism diagnosis and isn't that really what community college is all about?  

So here's my top five list of what FF needs to be successful in college:

1. Awareness and Encouragement. Staff members who will welcome him, say hi in the hallways, recruit him into a club, ask for his input or help, laugh with him, etc. People who actually want him there and appreciate his interest in economics or his ability to tell you the Academy Award winners and nominees for 2007. His anxieties are pretty high and he feels like he doesn't fit in anywhere. If a staff member on campus can build a rapport with him, it'll help a great deal. Training for key staff in the characteristics of high functioning autism and Asperger's as well as effective supports would be extremely appreciated. 

2. Peer mentoring. Students who are willing to take a student with disabilities on a campus tour, have lunch, meet after classes to hang out, go to a movie, attend a meeting with a professor for moral support, send occasional "how's-it-going?" emails, etc. A friendly familiar face in the hallway can be so crucial, but in community colleges that are most often commuter schools, students come and go. They don't always stick around to socialize. It would go a long way if student retention and/or disability student offices could actively recruit students--males as well as females, please!--to help students with disabilities fit in to campus life. 

3. Tutoring. Most colleges have tutoring offices. In our case, however, it's a drop-in tutoring center. We need tutors who understand the executive function and fine motor challenges of students with autism, who often need help keeping track of due dates, assignments, meetings and who struggle mightily with any kind of writing. Ongoing tutor relationships are usually better in that situation--not just whoever's on duty in the center that day. Screening and recruiting good tutors is a real challenge for families. Recommendations from the disability student office would be very helpful. 

4.  Transportation. Very few students with autism drive. I've been taking him to classes these first few weeks, but it's not an ideal situation. My work schedule is disrupted and he'd be much happier if he were going with a peer instead of (disgusted sigh!) a parent. I so appreciate that our local community college offers free bus passes for students. But in our case, campus is across town, two bus rides away. I'm not sure he can actually navigate that, but in any case, FF will need bus training and/or someone to drive him back and forth. Again, assistance from the disability student office would be very helpful. 

5. Assistive technology--in the classroom and at home. FF has a laptop, an iPod and a tablet (though not an iPad). What he doesn't have is training on how to use those things to his advantage, particularly in college. He needs an assistive tech evaluation, recommendations on apps and software that will best support him, and training on how to use those things. And NOT training from parents who are hopelessly, notoriously uncool. For the sake of peace on the planet, this kind of assistance needs to come from a trained third party.  The folks staffing the office of disability services also need to be aware of what works and what campus, local and state resources are available for students. And just FYI, when you're handing a student a stack of lined carbonless paper for notetaking, I would suggest you need a tech update.

For now, I'm going to side-step the question of who should pay for these services. (Encouragement, btw, isn't expensive.) I'd just like the services to be available to students with disabilities and their families making the leap from high school to college. As it is now, families are scrambling to cobble together their own supports. Yes, it's expensive, but it's also time consuming. In too many cases (and I'd like to see some real stats here) I'm guessing there are a number of adolescents with autism at home on the couch watching reruns of SpongeBob or bagging groceries at their local Kroger who could benefit from a college experience.

And, obviously, the list above isn't one-size-fits-all. It would be nice if transition teams could put together a list of needed supports and services and help families learn how to access them BEFORE their student walks into their first college course. A closer relationship between high school guidance counselors who staff those Transition IEP teams and the director of the office of disability services at the local community college could also pave the path from door to door. I'm sure they could learn from each other.

Families out there who've been down this road: How did you make it work?  Or, if your student wasn't successful in community college, why? What would have helped him or her?  Are there other things that should be added to the list above? I'd love to see Indiana start an online Ivy Tech "user group" for families of students with autism and other disabilities, so that families can learn from each other. Is there such a thing? 

Transition Boot Camp

It's been a heckuva transition summer. This post should be subtitled What I Did This Summer and Why I Need a Vacation.

Here's the short version (hang on; it's a bumpy ride): 

• The non-graduation
• "I don't have any friends"
• No support for postsecondary education from VR 
• Denied Medicaid 
• Targeted for the Support Services Medicaid Waiver
• Not eligible for the Support Services Waiver
• Pulling the rug out from under my Fundamental Assumptions about benefits, the waiver and services 
• The Rent-a-Friend semi-solution
• Much needed vacation 
• Enrolling at Ivy Tech 
• "Flunking" Ivy Tech's Compass "placement" tests 
• "Passing" the Compass tests 
• Gone fishin' 
• John Hancocking a bazillion forms when you have fine motor challenges
• Red tape--there oughta be a law.
• Starting classes at Ivy Tech
• Zeroing in on the primary objective, a.k.a. "This is not meeting my expectations!"
• Searching for supports
• Leaving work early to play taxi
• Disillusioned, disheartened and discouraged with Indiana benefits
• No peer mentoring for Ivy Tech Welcome Week
• This is a web-based class?
• Dropping a class
• New ruling: a 529 educational savings plan held in a parent's name does not necessarily mean you are denied Medicaid. "You should reapply."
• To jump through hoops or not jump through hoops?  That is the question.

Caught up yet? And this is just for one of our children. I need a swig o' Pepto after just rereading the summer summary.  

Stay tuned. I'll flesh out a few of the details. 

Advocating for Yourself: New Life Skills

Last week Daughter Dearest learned how to speak up for herself at work. Cheers, whistles, fireworks, and woohoos are in order!


DD's been working a part-time job at Kohl's for about 10 months, which is still great for her. Her schedule, however, varies greatly--10 hours one week to 28 hours the next. And that's the problem. She would really like to keep her hours to somewhere around 12-15 hours per week, something she told them when she first started. More than 20 hours puts her on edge and increases her level of anxiety to about a 4 1/2 on the 1-to-5 scale. Not good.  


She's also taking a summer class at Ivy Tech, which started this week.  Given her Asperger's, it's a lot. Trouble is, she's never declared her Asperger's to Kohl's human resources department.  And I understand that--she just doesn't want people looking at her differently.  


But DD loathes confrontation and is just now, at the ripe old age of 21, learning to speak up for herself in a calm, appropriate, effective way. She's being coached on this, both at home and with her therapist, but it's still tough. For the past several months, we've explored ways to help her communicate the message--"I need fewer hours, please!"--to her managers. We explained that it's really not a big deal for Kohl's managers, that they probably hear about scheduling issues from employees all the time.  


DD's no longer working with her employment services provider (you have 90 days with them following date-of-hire), but I'm sure they, too, would have been willing to coach her through this. But, again, that involves calling someone on the phone and saying, "I have a problem."  


And then there's the tortured thought process. Each time her schedule would balloon with hours--this week it's 38--she would think that it was because the person doing the schedule was purposely disregarding her need to keep her hours below 15 per week. We tried explaining that it was much more likely that she was a reliable employee who did her job well and was there on time. They count on her. Or it could be that there are fewer workers in the summer, with vacations and students who've left town, so Kohl's needs to put her on the schedule more often. 


So last week, in despair seeing that she was again on the schedule for 32 hours, DD forced herself to go into work on an off day. She sat in the parking lot for 30 minutes steeling herself for the conversation to come. And. Then. She. Did. It.  Took all of 5 minutes.  


"Hey, Bob, I need to talk to you for a minute about my schedule.  I'm taking a class this semester and I really need to keep my hours to about 12." 


"Oh, okay. Could you do 15 sometimes?"


"Sure, I could do that."


"Okay, not a problem, I'll just leave a note for Pam [the scheduler]."

Heart restarts. Breathing continues. Heavens part. Huge weight comes off the shoulders. Smile re-emerges. 


Ironically, this week DD discovered the mystery of the way-too-many-hours schedules. Turns out Kohl's "rewards" employees who sell more credit applications to customers (something DD just HATES doing) by giving them more hours. Lately more of her customers have been filling out apps, thereby moving DD up a notch on the favored employee list.  


The wonderful thing is that DD learned how to advocate for herself and found that it's not the huge obstacle she made it out to be. It's actually pretty doable. The firmament will not split in two. People won't think she's a horrible person. Meteors will not fall from the sky. Pestilence will not consume the earth. Hallelujah! Now we're holding our breath for the ultimate reinforcer--seeing that the scheduling manager has followed through and lightened her load a bit. 

Picking a Single Transition Path

Remember when I recommended the combo approach to transition?  In a previous post (toward the end of this one, if you need to refresh your memory) I noted that we tend to choose multiple paths in life--school, work, volunteering, hobbies, etc.--and I suggested that our children with special needs should have that same choice. Well, easier said than done. 


At our final Transition IEP case conference, I was introduced to a new participant in the process: Reality. Our Indiana Vocational Rehabilitation counselor invited him. He's kind of a downer, actually, but she sent him home with us and I suspect he's here to stay.

It always amazes me how clueless I still am about how transition really works. This despite the fact that I try to read the research, I attend conferences when I can, and I work in an office with transition experts. But I'm still in the dark. For the past two years, I've had a very hard time trying to envision what our son Fickle Fan's life will be like post high school, what supports will be available to him, who will provide them, and what he'll actually be doing with his time all day. FF graduated last week, and I still don't have answers to most of those questions. 


I do know now, though, that FF will need to pick a VR path. A single, either-or path. Employment or postsecondary education. VR will support him in one of those, but not both. I was hoping that FF could take a couple of classes at Ivy Tech and have a part-time job, supported in both by a local disability service provider. That way, FF continues to learn and get exposure to new fields while he also gets needed job experience, where he'll learn job skills and all of the things that come with that, like money management, social awareness, time management, etc. Both avenues accompany opportunities that could lead to permanent employment. And, yes, I know that we'd be beating the odds if that were to happen. 


VR, however, can only put its financial eggs in one basket at a time. FF CAN decide to pursue an associate's degree at Ivy Tech and see how that goes. Then, after a year or so, if that's not working out, he can go back to VR and ask for employment support. At that point VR would then pull the lever and switch the track over to employment services. So, as I understand it, FF isn't completely out of luck if he chooses a path that doesn't immediately work for him. He could reorient himself and try again.


But I'm loathe to limit his options when he's just 18 and still stretching and opening up to life's possibilities. And, given his high-functioning autism, I'm not sure the single focus approach is a good one. Many, many neurotypical teens hold a part-time job while taking classes at a community college. I think that makes sense for FF too. 


So is that our only option? No. FF could choose to attend Ivy Tech with VR support, and he could get a part-time job, but he'd be on his own, without help finding a job, without a job coach, and on the front lines in potentially stressful situations without an advocate or with co-workers who may not understand FF's particular version of autism. It's a little scary. 


We could also take the other route. FF chooses employment with VR support and takes a class or two at Ivy Tech, but again, without support.  We would need to recruit, screen and hire tutors and probably a notetaker/scribe, and we'd need to provide him with transportation. The Ivy Tech in our area provides very little support for students with disabilities. The office of disability services will provide letters that the student can then take to professors to ask for accommodations, but, as in many other universities, the student is expected to advocate for themselves on campus and in the classroom. Self-advocacy is one of those skills that the majority of students on the spectrum lack. Nothing makes my children cringe like the thought of asking a stranger for something they need.  So having him take classes without any support seems like setting him up for failure.  


We're hoping to put a plan in place with VR in the next week or so that would also get him some sort of support for the summer. I'll keep you posted. Meanwhile, Reality says he wants to move in, rent free, and begin calling the shots. Demanding little bugger! Sigh.

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.  .