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New year, new hope

Most of us like getting gifts; most of us have unwrapped at least one in this festive month. But I’ll venture that the best gift people in dire circumstances could get, other than having all their problems magically disappear, is hope – new hope for better times ahead, based on real happenings that make it more than wishful thinking.

From the things I’ve learned while maintaining this blog, it seems to me that real hope is out there for our atypical young people:

Researchers continue to make connections and discoveries;

Therapists are working inside and outside the box to help their clients manage life’s challenges;

Improved financial support mechanisms, like ABLE accounts, are becoming a reality;

Many educators are committed to guiding atypical students through the learning process;

Families can access online resources and in-person support groups;

The damage that bullying can cause is increasingly recognized;

Innovative programs for housing, higher education, and employment are popping up; and

Media coverage is increasing – for instance, here’s one hour of the Diane Rehm Show on NPR devoted to supports for young people on the autism spectrum.

With all of this, the stigma is starting to diminish, ever so slightly. It’s encouraging to read and hear more about (for instance) the visual strengths of people on the spectrum, the innovative thinking of those with ADHD, or the creativity of many who have emotional challenges.

While much remains to be done, and we’re still a long way from the ideal, it is heartening to see the issues increasingly addressed and reframed. In words and actions, there’s real reason for hope.

Our family has new reasons for hope too. Nathan, who a few years ago was so down on himself and so bitter about society’s failings that he was ready to end his life, this year has willingly filled out applications for part-time work. Not only that, but he is gently prodding me to help him find more places to apply. Meanwhile, Alan had several “aha” moments this year that have led to a more mature outlook. He is less of a victim with problems someone else should fix, and more of a “I’m responsible for my efforts and choices” kind of guy.

When I started this blog about four years ago, I really didn’t expect to write a paragraph like the one above, ever.

Readers, I hope that over time you’ve found some useful knowledge and hope in the paragraphs of this blog. May your gift in the new year be new hope at a personal level. And may we all see positive changes for the broader community of neurodiverse young people.

Launches that fail or fizzle

While the phrase “failure to launch” might be recent in origin, the phenomenon of young people who are stalled on the path to accepting adulthood is nothing new. In this clip from decades past, watch how one mother handled her son’s (literal) failure to launch:

We can laugh, but when launches fail (or the craft takes an unexpectedly long time to reach the target) there’s pain, fear, frustration, and confusion for parents as well as young adults. Climbing the Cinder Cone is really all about find ways to avoid, shorten, or soften the “FTL” period for our atypical young people. It’s time to take a look at the situation that gives us so much grief.

First, what is the ultimate destination for the “rocket” being launched? Some say it’s to lead a balanced life with passion and joy. Another source says adulthood is achieved when a person looks to himself/herself for solutions; is financially self-sufficient; and gives the family support (instead of only receiving support from the family). The mature adult may not actually do everything that’s needed, but will make sure that somehow things are taken care of – instead of relying on others to do the worrying and arranging.

Launch problems can take on a variety of forms. Junior may flat-out refuse to get off the couch, period. Or, parents may see attempts (made with varying degrees of determination, with varying degrees of success) to complete classes or to find or hold jobs. Sometimes accidentally-on-purpose self-sabotage might come into play. A pattern our family knows very well is when the young adult zigzags from one goal to another before achieving any of them.

A big part of the problem is that launching requires several attributes that our kiddos tend to have in short supply: persistence, resilience, inner motivation, belief in one’s ability to succeed, and willingness to be independent as well as interdependent. These deficits may be innate or may result from repeated struggles in school, hassle at home, and difficulties in social settings.

Issues stemming from these deficits include procrastination, lack of drive, a pattern of avoiding challenges, and an unwillingness to delay gratification. Sometimes an inability to control anger is thrown in.

These attitude challenges occur on top of functional deficits in sensory processing, attention, organization, memory, social skills, and/or mental health. Filling out applications, taking a class, learning a job: they’re all difficult enough even for a person without such deficits! And now the young people are expected to tackle these daunting tasks with much lower levels of support than they had in the more structured world of high school. Not a recipe for a flawless transition.

As Dr. Rick Silver of THRIVE points out in this article, individuals with ADHD typically have a 3-5 year lag in reaching key developmental milestones. If ADHD is in the picture, the launch process may start later, take longer, and follow a trajectory with more loops and dead ends than we thought we would tolerate.

In this article, Dr. Robert Fischer at Optimum Performance Institute (OPI) shows us that in order to launch successfully, a rocket needs:

  • Fuel – in this case, energy and desire enough to overcome the “gravity” of fears and negative thinking that hold the rocket on the launch pad.
  • Liftoff – this is action! That rocket has to do something to overcome the pull of habit and avoidance.
  • The rocket – the young adult has to be sturdy enough in body, mind and spirit to get from the launch pad to the target.
  • Navigation – this includes aids to achieving the target, like getting help to stay on course.
  • Refueling – similar to navigation, refueling takes place after the initial launch and helps sustain motivation, build internal momentum, and enable perseverance through ups and downs.

If these elements aren’t in place, our “rocket” isn’t going very far.

Of course, transition programs like THRIVE/Heron’s Gate, OPI, and the ones on the Resources page are all about having an expert team support the launch.

In families that don’t access such programs, parents often end up providing partial or total support for months or years beyond what was expected. Is that the right thing to do?

Opinions vary. One counselor put it to me this way:

If you’re giving help, but

the help isn’t being used in the way you intended;

progress toward the goal is minimal;

the help is being taken for granted; and

you end up resentful and negatively impacted;

then you’re not “helping” the situation, you’re HURTING it.

It’a a balancing act for parents, to be sure: a balance between holding on and letting go, a trick in recognizing when support is really needed and when it isn’t. Join the club if you’re having trouble finding the sweet spot!

While searching for that balance, consider these suggestions from Dr. Silver and others:

  • Let the young adult connect with his or her own gifts, strengths, and passions (unless they involve criminal activity)! Encourage him or her to experience mastery.
  • Avoid insisting on a path that doesn’t suit the individual.
  • Emphasize the possibilities (positives) of adulthood, rather than hammering on the boring, scary responsibilities.
  • Get a diagnostic workup for the young adult. A thorough neuropsychological evaluation will help identify the troublesome deficits and point to the most effective treatments.
  • Allow an executive functioning coach or other mental health professionals to do a portion of the guiding.
  • Encourage good self care.
  • Don’t feed a sense of entitlement. Be clear on what you will or won’t do. Establish consequences, and be firm in enforcing them.
  • Celebrate the small successes, and be patient with the frustrating setbacks.
  • Be realistic about the timeline: it’s likely to take months or years.

Going back to the video clip, we can watch some of these suggestions put into practice. Mama Buzzard sees her son’s reluctance to go and bring home a large animal for dinner and revises her expectation to something “Killer” is more likely to achieve: bringing home a “rrrabbit.” Then she makes sure he leaves the nest! (In my more impatient moods, I am totally ready to copy her technique.) Notice also how Killer goes at his own pace once he leaves the nest – probably not flying nearly as fast as other young buzzards his age. But he’s going.

Our family has had its share of small successes and big missteps in the launch process. It’s been bumpy, and it may not be over, but at least now we’re seeing more forward momentum. I wish all of you at “Mission Control” an ultimately successful flight path!

***

Other sources:

http://psychcentral.com/blog/archives/2015/02/27/failure-to-launch/

http://www.addvance.com/help/young_adults/independence.html

Journal entries in a confusing time

When Nathan was in his teen years, I kept a haphazard journal of what life was like. By sharing a few of those entries below, I hope to convey the emotional exhaustion, the confusion, the wide swings in outlook that were part of his life, and ours.

I’m glad I made the journal entries. They show how things were, much better than my memory would ever allow. Today, I’m glad to say that while “things” are still a concern, they are nowhere near as volatile for us as they were back then.

The first thing I wrote in my pseudo-journal was not a journal entry, but a note to Nathan when he was 13. (Sometimes it felt better to write it down, giving him time to digest and think about his response. Discussions can get off track and go careening down an emotional path that can do harm, while the initial point gets lost.)

Anyway, in the note I told him of all the good qualities he had, then went on to explain that his father and I were seeing some troubling trends in his behavior, decisions, and attitude. I talked about why we were trying very hard to steer him away from doing things that would limit his potential for the future. I closed with acknowledging he seemed to be a pessimist by nature, but encouraged him to “look for the possible, more and more, and obsess on the obstacles less and less – especially the ones you create for yourself.”

I think he didn’t react much – maybe just a shrug and “yeah, I read it.”

The journal excerpts below are a sampling – I wrote other entries on other days -and they mostly convey Nathan’s actions and feelings. Throughout the journal, there’s also mention of what medications he was on, and how the dosage was being adjusted by the psychiatrists: Effexor XR, Risperdal, Invega, swap this one for that one, Prozac, try Risperdal again, try Lamictal again, Lithium ….

Here an excerpt from when he was 15:

Last week for the first time he expressed an idea of a possible job he’d be interested in (dealing with zoo animals). Before that, he often said that all jobs would make him miserable, so he might as well be homeless. Tonight he is still holding the idea that school is being forced on him, so (he thinks) it’s understandable why he lies about having done his work, and why he doesn’t do the work in the first place.

A few months later:

A bad day. Nathan has 3 F’s and 2 D’s. I imposed consequences; he snuck out of the house without permission, returning only to “get some money and Chapstick.” We then talked more than two hours. He doesn’t feel appreciated at home, says he is a failure, says he was born a failure, has nothing to live for, believes leaving is the best option. By the end of the day he was back to being respectful, leaning on my shoulder, etc.

A week later:

First day volunteering at the Library, something he was not likely to have done six months ago. Went there with minimal complaint, and said afterwards that he had enjoyed it, that maybe he could work in a library as a paid job someday.

Two months later:

Some mixed signals. In an hour-plus conversation with me, Nathan said he didn’t think he’d live to be 16. I asked him what he’d like to see happen (no more school? work part-time?); he said the best course he could think of involves his death. Daily life would have more meaning if daily tasks were essential to living (e.g. gathering food for a meal).

So that’s a pretty big negative. On the plus side, he’s showing interest in playing Uno with the family….

We think he had a sleepwalking incident last night. It was odd, scary behavior. We haven’t known of a sleepwalking incident in several years.

At age 16:

Nathan is now taking 6 mg Invega. It seems to be helping; some potentially volatile situations did not turn out badly (start of school year at his new school; getting blood drawn). He is falling asleep more easily (and voluntarily) and seems to be sleeping more soundly. He volunteered that he loves his new school and is making friends – two things he predicted would never happen. His teacher reports that Nathan smiles at times….

I’ll close for now with another entry from when Nathan was 16:

Nathan was up to 40 mg Prozac earlier this month. Dr M dropped it back down to 20 mg after some worrisome developments.

Nathan was saying how he isn’t afraid of going to jail any more, so that fear was no longer a restraint on him hurting someone who had hurt him. He talked about going after people who had teased him in elementary school, as well as anyone who messes with him now.

… The Monday before [Christmas] break at school, he got a referral from his Ceramics teacher for refusing to participate in class and getting surly with her. The same day he got detention for using excessive profanity in Mr. F’s class. He didn’t want to go to school the rest of the week.

He was withdrawn/sleepy during family get-togethers at Thanksgiving and Christmas. He didn’t interact as much with his cousins, whom he usually enjoys.

He has stopped playing with [a longtime childhood friend]. Nathan had an angry phone conversation with him, trying to convince [the friend] about his world views and getting angry when [the friend] wouldn’t commit to “having my back no matter what.” Loyalty seems very important, and according to him you are either for him or against him.

Nathan is more resentful when he judges that other people (parents, teachers) “overreact” negatively to his misbehavior.

There have been some positive signs mixed in with all this, but the overall trend was not good.

Preparing for an emergency

Thanks to the cooler weather and colorful trees it brings, October is my favorite month. But alas, sometimes bad things happen even in what I have proclaimed to be “the best month of the year.”

I remember a particular afternoon in October 2007. I was watering the plants in our back yard and looking up at the mountains a few miles away – the mountains that happened to be on fire in several places!

The dry breeze wafted ash particles into our yard. Now, what if a live ember or two drifted in? What if the wind picked up and pushed the fire in our direction?

Four blocks closer to the mountains, families were now being told to evacuate.

My husband was out of town on business. In the house were our two atypical teenage boys and two dogs (who also had their quirks).  If we were told to evacuate, what would I load in the car? How would our guys cope with going to a shelter?

Hmmm – it would be nice to be MORE PREPARED!

No matter where you live, there’s a possibility of some kind of natural disaster. Extreme weather, floods, landslides, earthquakes – everybody’s got something to watch out for. And let’s not forget disasters of human origin (train derailment, pipeline rupture, and other nasty accidents.)

I recently attended an LDA chapter meeting where the guest speaker’s topic was Family Preparedness for an Emergency. While all families should have a plan and some emergency supplies on hand, special-needs families go to the head of the list of People Who Should Be Prepared. Because, let’s face it, having to evacuate your home, or having to do without electricity or fresh water for days is stressful enough – but dealing with that AND with loved ones who don’t tolerate change or chaos? Oof, and double-oof! We need to be as ready and as smart about emergency situations as we can be.

This link from FEMA is a very good reference for general preparedness.  It guides you through the basic elements of Being Informed (about what could happen, and what is happening as disaster strikes), Making a Plan (if scattered, how will you get together in a safe place), and Building a Kit (of supplies).

The American Red Cross also knows a thing or two about preparing for emergencies. Their website includes this page regarding people with disabilities. Note the link on that page to a booklet relating specifically for people with disabilities and special needs, including learning disabilities.

Clicking either the FEMA or the Red Cross links should get you well on your way to better preparedness. Instead of presenting that information all over again, I’ll just highlight a few good ideas that were brought up in the meeting I attended, and some things that occurred to me.

Where To Meet Up

In case your residence is no longer there, or not accessible, you’ll want to have established a place where scattered members of your family can find each other. A smart meeting place would have at least some of these characteristics: out of the danger zone (like, not next to a river that’s prone to flooding); close to major streets; easy for all family members to find, by car or on foot; at or near where helpful people or supplies are likely to be (hospital, store, etc,) The presenter at the meeting said her family’s rendezvous place is Costco. Brilliant! For them, it is close to home, right off the freeway, and a good place to obtain supplies.

Documents

  • Among the documents you should have handy is an updated list of contact names and phone numbers. These days, rather than dialing a number, most of us find a contact in our phone and push “Call.” In an emergency, if your phone is lost or unusable, you may need to borrow someone else’s phone – and that stranger is not likely to have your Aunt Matilda in their contact list.
  • You’ll want to have access to documents like insurance policies, bank records, proof of ownership of house and cars, and important medical records. To have a paper version, you can put photocopies of the originals in a sealable plastic bag. Another option is to have these documents available digitally. You can store scanned versions on a USB, or you can have them stored in “the cloud.”
  • If you’ve been exposed to the concept of a special needs trust, you may have heard about a document called a letter of intent. This document, which you will have written, describes all the ins and outs about your special-needs family member – to provide guidance to whoever is providing support to your son or daughter after your demise. This would be an excellent document to include in the plastic bag or on the USB.

Supplies

  • Your supplies can be stored in a large, sturdy plastic container – easy to grab and load in the car. One person at the meeting said they keep their family’s supplies in a large ice chest.
  • Have on hand one gallon of water per person per day. The presenter suggested having enough water for three days. If you have pets, add more water to your supply.
  • Include canned foods that are high in liquid content. Don’t forget a manual can opener! Avoid putting salty foods in the kit. The goal is to stay hydrated and make sure your water supplies last.
  • Have a change of clothes for each person, ideally including a long-sleeved shirt, pants, and sturdy shoes. (Since our older son wears T-shirts, shorts and sandals year-round – it’s a sensory thing – I’m not sure how cooperative he’d be in wearing anything else!) Anyway, you know those ratty but well-loved clothes you finally persuaded your teen to stop wearing? Don’t throw them out – save them for the emergency kit! Not only will they be useful in an emergency, but they’ll provide physical and psychological comfort in a time of overwhelming stress.
  • Especially for our special-needs peeps, it would be helpful if the kit includes comfort items and ways to pass the time. An old stuffed animal or blanket, well-loved books from the past, travel games and a deck of cards might all help tone down the distress levels. I wouldn’t want to depend solely on electronic devices, since electricity for charging them may not be available.

If you have a tip to include, please share it in a comment on this post.

In honesty, our family would not score all that high on preparedness at the moment. We’ve maintained an “earthquake kit” for years, rotating the food items out every six months. We used to keep many spare gallons of water, but lately have slacked off on that. Since our move a few years ago, we haven’t set up a new rendezvous location. Neither of our sons, who have their own apartments in town, have anything resembling an emergency plan or kit.

Do you feel you’re too busy to set all of this up? Depending on the individual, you may want to consider giving the task to your atypical teen or young adult. That could be a truly helpful contribution s/he can make to the family.

In any event, writing this post is giving me a much-needed kick in the pants to become better prepared. I hope it motivates you as well.

PS:  We never did have to evacuate back in 2007. My heart goes out to families who have been less fortunate in the face of an emergency.

When there’s talk of suicide

Of all the topics this blog will ever address, “atypical young people and suicidal thoughts” is probably the most sensitive, emotional, and uncomfortable. Below is my attempt at shining some light on this high-stakes “elephant in the room.” If, in reading what follows, you find errors to correct or have additional information to share, please please please leave a comment.

This isn’t a random topic. Studies have shown proportionately higher suicidal tendencies in our adolescents, whether the diagnosis is ADHD,  Aspergers or other autism spectrum disorders, learning disabilities, depression or bipolar disorder, or other brain differences. Social isolation and the struggles to complete even minor tasks are among the causes for the despair that often overwhelms our young people.

This post will provide general information, address how “the system” works when suicide appears imminent, and share our family’s experiences. It is not your one-stop shop for all the answers, but hopefully it will provide some insight.

First, my heart goes out to all individuals and families who are grappling with suicidal thoughts or actions. Above all, please know that help is out there. You are not alone, and you don’t have to face it alone.

Here’s some general information for coping with a crisis:

In the US, the number for the National Suicide Prevention Lifeline is 1-800-273-8255, or 1-800-273-TALK. They will counsel anyone contemplating suicide (or someone who is extremely stressed out but not suicidal). They will also talk to anyone concerned about a suicidal loved one. Your call may be routed to your nearest crisis center, where the staff will let you know what resources are available in your area.

I also found this really thorough and helpful summary of general suicide warning signs, and what to do and not to do: www.helpguide.org/mental/suicide_prevention.htm. If you only click on one link here, make it this one.

Many times, a person who is considering suicide avoids telling anyone – and therefore doesn’t get help – due to fear of being carted away and locked up. However, talking over suicidal thoughts with a counselor is often sufficient for heading off the threat, and won’t involve any drastic outside intervention.

Drastic action is required when four things become evident: that the person has the intent to commit suicide, has a plan for how to do it, has the means to carry out the plan, and has identified a time for doing it. Together, these things constitute a highly serious suicide threat.

My understanding is that, at least in California, the law requires that a person who has the intent, plan, means, and timeframe for suicide – or who is found in the midst of a suicide attempt – be taken to a psychiatric hospital for an involuntary 72-hour hold. Usually the police transport the person to the facility, in a process known as a “5150.” (Here’s a link where a police officer describes a 5150 from his point of view.)

While at the hospital, the person will be evaluated and given appropriate medication (at least in theory). At the end of the three days, the person may be released – or, if the threat is still real, continued hospitalization for up to 14 days may be recommended. A judge may order the hospitalization if the patient won’t go voluntarily.

I’m thankful that our family has no direct experience with suicide attempts or involuntary holds. However, both of our sons have expressed suicidal thoughts, which has been plenty traumatic for all of us.

Alan has voiced such thoughts a handful of times, while he was highly aggravated. He is prone to exaggeration, but given his impulsiveness we can’t just dismiss such talk. The most unnerving incident happened while he was away at trade school. He called me in the midst of a meltdown, then hung up and texted me a suicide note. Hundreds of miles away, what could we do? I left a voicemail with his apartment manager asking her to keep an eye out, just in case. Then his father called Alan, and within 15 minutes Alan had settled down to a depressed-but-not-suicidal level. Months later, when I mentioned the text to Alan, he said he didn’t even remember it.

Nathan’s suicidal tendencies have been more deeply rooted and persistent. He first expressed suicidal thoughts to me a few months before he turned 16, which was shortly after he’d had a brief, scary psychotic break (or rage incident). That was also the end of his sophomore year, when we agreed to have him placed in a Special Day Class for emotionally disturbed students. We hoped that fewer academic and social challenges would ease his pain.

Over the next two years he still talked about suicide a fair amount. During this time he had regular appointments with psychiatrists, and was admitted to a partial hospitalization program, as described here. We were advised by a couple of therapists to hide our sharp kitchen knives. Shortly before he graduated, the teacher’s aide voiced concern that Nathan was giving away some of his possessions to classmates.

After he finished high school, he indicated he’d enjoy his summer – and then end it all. Exasperated, I said I could find 50 reasons for him to keep living. He took me up on it. I worked hard on the list, generating my own reasons and reviewing what others had come up with. When the list was ready, he read it, then tossed it aside and sneered, “Is that the best you could do?”

Dark days. But, he held off.

Even though he no longer attends church, religious beliefs (or probabilities) have been one big reason Nathan hasn’t followed through. He has concluded that, because the concept has come up repeatedly around the world, there must be a God and an afterlife, although maybe not the way Christianity presents. Nathan wrestles with the idea that suicide is a sin that would land him in hell for eternity. It’s been too big of a risk, with no way to fix the situation if it turns out to be true.

I know about this because ever since he was 16, Nathan and I have had many in-depth talks about his dark, dark philosophy. He almost always started the discussions, which could last for two hours or more. Although in our first few sessions I reacted as any heartsick mother would, over time I became better at listening without offering judgment or shooting down his ideas outright. I’d sometimes point out that other people reached conclusions different from his, and I’d then listen to his counter-arguement. While these disturbing talks sometimes left me in tears, or staggering like a zombie afterwards, I was willing to be his sounding board, if that’s what he needed.

In these talks, we established that his suicidal tendencies were not because his life situation was so bad. He was also not pretending to be suicidal to manipulate his way to an easier life. His reasons were based in cold logic about the futility of existence and the stupidity, arrogance, and maliciousness of the human race. Emotions had nothing to do with it – in fact, he expressed contempt for people who commit suicide out of emotional despair.

When Nathan was 19, he told his therapist that he had three alternate suicide plans to choose from. At age 20, he chose one of the plans and had the means to carry it out. He also set a timeframe, and was determined not to flake by going past it. He rationalized that an all-loving God would not punish him for eternity.

Despite his determination, Nathan’s timeframe slipped, a couple of weeks at a time, from early fall to the end of the year. During this period, a few of his relatives called to let him know they cared, to discuss his hurt and the hurt he would bring about, and to try to understand his reasoning.

Also during this time, I saw our family counselor, who had treated Nathan in the recent past and had known his story since boyhood. We talked about what our family would do if Nathan committed suicide. Then she said,”What will you do if he doesn’t?” Now, if the subject of suicide is the elephant in the room, she had just illuminated the T. rex in the corner – the fact that even loving family members can have mixed feelings about a deeply disturbed loved one ending it all.

Her immediate advice to us was to avoid bringing up the subject of suicide with Nathan. If he brought it up, we were to briefly acknowledge it, but tell him we didn’t want to talk about that, and change the subject.

The holiday season approached. Nathan had finally resolved to die between Christmas and New Year’s. A few weeks prior to Christmas, his psychologist (Dr. M) and I had a phone conversation. Dr. M explained that professionally he was required to intervene to prevent the suicide, and the time to do that would be at their scheduled session right before Christmas. He would ask Nathan one last time about his intent, plan, means, and time. If all the answers pointed to a serious threat, Dr. M would call 911 and prevent Nathan from leaving his office, tackling him if necessary, until the police arrived. (He asked me how likely it was for Nathan to be carrying a knife or other weapon.)  Nathan’s 72-hour hold would therefore involve being locked up during Christmas Eve and Christmas Day.

Dr. M said he’d had to do this a few times with other patients. It had always worked, but he hated doing it. He realized that if it happened, Nathan would never trust him (or any other therapist, or maybe even us) again.

Nathan had told me earlier that he would never let the police take him, which gave me even more to stress about. Would he try to run? He wasn’t familiar with the town where Dr. M’s office was – in fact, it was in the next county. Would he hurt someone else? Would he provoke the police to take him down (death by cop)?

The next-to-last session came and went. In the waiting room at the end, Dr. M gave me a meaningful, serious look and said he’d see us next time.

Nathan and I started the long drive back to our town. All those years of talking, trying therapies and medications – it came down to this. A few more days and our world would turn upside down.

I didn’t want to say too much, or say the wrong thing. After 10 minutes of driving in silence, I finally said something like, “I know I can’t talk you out of it, but I just need you to know, I love you, and I really don’t want anything bad to happen to you before New Year’s.”

Out of the corner of my eye I could see a tiny smile on Nathan’s face. “It’s OK, Mom. I’ve given it some thought, and I’ve decided – well, I’ve decided to hold off until – until April.”

April! He’d wait until April! In any other context this would be terrible news, but at that moment I felt as giddy as George Bailey running through Bedford Falls toward the end of “It’s a Wonderful Life” – “My son says he’ll commit suicide in April! Merry Christmas!”

Somehow I kept the car on the freeway as relief and emotion overwhelmed me. “I’m very glad to hear that,” I said as calmly as I could. I don’t remember if we said anything else.

Back at work, I told my husband the good news, and then emailed Dr. M. He called me later, saying he was very relieved – and surprised, because in the session that day Nathan had been firm in his decision to go ahead with it as planned.

Well, that April came and went, as have a few more. Nathan has spoken of suicide only occasionally since that very tense holiday season. We don’t know what he’ll ultimately decide to do or not do, but we are grateful that at least for now it is only a background issue.

It may help you to know that all the therapists and others I’ve spoken to who deal with atypical young people say they have never dealt with an actual suicide – although they have seen a few close calls.

Of course, the tragedy of suicide does occur, every day. My wish for all who are impacted is that they receive the care, counseling, and understanding they need to make it through each day.

For the rest of us who may be confronted with suicidal thoughts or actions, education and awareness are needed to make it less likely that the elephant in the room causes permanent, heart-breaking damage.

 

 

 

Health insurance coverage for young adults with a disability

Especially given the recent changes in the American health insurance landscape, the medical care coverage available to disabled young adults can be a confusing issue.

I have asked for clarification from people who seemed likely to know how it all works; I have read stuff on the Internet and in print; I have been referred from one agency to another to a nonprofit to another and back to the original agency for answers.

After all that, do I have a confident understanding of health insurance for disabled young adults? Sadly, the answer is “no”!

What follows is the best I can piece together. While there may be gaps in the information, hopefully there is no incorrect information. In either case, let’s hope one or more experts will read this post and leave comments to straighten out whatever needs straightening!

First we’ll look at some essential information; then, given those facts, we’ll look at questions one might ask, along with the answers to those questions. At the end are some links where you can find more information.

Essential Information

1. Thanks to the federal Affordable Care Act (ACA) of 2010, young adults can remain covered on their parent’s employer-provided health insurance until the age of 26. They do not have to be claimed as a “dependent” on their parents’ income tax to be covered by their parents’ insurance.

2. Disabled adult children can remain on their parent’s health insurance past the age of 25 if the insurance company is provided with appropriate documentation around the time the coverage would otherwise be terminated.

3. The extension of the parents’ dental and vision insurance to their young adult children (age of 19 and up) is not federally mandated, but is left up to the states and insurance companies to decide.

4. In most states, anyone who qualifies for SSI is automatically eligible for Medicaid (under whatever name it is known in the individual’s state.) In some states, an individual who is found eligible to receive SSI benefits must apply for Medicaid separately.

a. If a person is enrolled in Medicaid because they are receiving SSI, and s/he is also covered by the parents’ health insurance, the Social Security Administration (SSA) has to be informed about the private insurance coverage.

b. A disabled person might be able to get Medicaid even without receiving SSI. The eligibility rules for enrolling in Medicaid may vary by state.

c. The number and types of services covered by Medicaid may also vary by state.

5. Medicaid in California is known as Medi-Cal. (Clever, huh?) Under Medi-Cal at least, the individual does not pay for doctor’s visits or prescribed drugs.

In my son’s case, a State of California Benefits Identification Card came in the mail shortly after he was approved for SSI. This serves as Nathan’s Medi-Cal insurance card. Later on, Nathan was asked to choose between two Medi-Cal Health Plans (also known as Medi-Cal Managed Care) available in our area. If he were to use Medi-Cal, he would need to go to the doctors and hospitals in the Health Plan that we chose. (To date, he has not needed medical care, and has had mental health treatment covered by his father’s insurance plan.)

This document from the California Dept. of Health Care Services contains more information about Medi-Cal for SSI recipients.

6. In California at least, dental services are provided under the Medi-Cal program. This facet of Medi-Cal has the equally catchy name of Denti-Cal. I read something that said for a variety of reasons, there is a shortage of dentists who serve Medicaid patients.

7. If an individual is covered by both Medicaid and private insurance (such as the parents’ health insurance), the group health insurance policy would be the primary payer and Medicaid would be the payer of last resort.

Questions and (hopefully not bogus) Answers

1. My disabled young adult child is covered by both Medicaid and my insurance. Having him/her on my policy increases my payroll deduction, and I have copays, etc. Is it smart to remove him/her from my insurance?

Removing him/her from your insurance may save you money, but it may not be the smart move. Before making a change, it would help to address these questions:

  • Which services does Medicaid cover? Is your son/daughter likely to need any of the services Medicaid doesn’t cover? Does your health insurance cover those services?
  • How close is the nearest physician/hospital that takes Medicaid?
  • How well do these physicians and facilities rate in online reviews?
  • How much of a lag is there when scheduling appointments? What is the typical wait time in the emergency room or urgent care facility? How do they compare with the waiting times you’ve experienced with providers that take your insurance?
  • How do the out-of-pocket expenses compare side by side: deductibles, co-pays, annual or lifetime maximums, etc.?

2. In practical terms, what does it mean that “Medicaid is the payer of last resort”?

This is where I am least confident about how it all works, but here goes:

If a patient is covered by both private insurance and Medicaid, the private insurance should be used first and billed first.

Suppose the patient needs to see a primary care physician. The patient has a doctor who takes Medicaid but not the parents’ insurance, and a doctor who takes the parents’ insurance but not Medicaid. The patient should NOT go to the Medicaid doctor. I don’t know what kind of trouble that would bring, or how closely these things are monitored and by whom, but presumably there would be trouble.

There might be physicians and facilities in your area that take both Medicaid AND your private insurance. I’ve been told that using them is the optimal way to go, because the private insurance will be billed first; then, whatever charges the private insurance doesn’t cover could be paid for by Medicaid. Your out of pocket would then be “zero.” This would especially be a good thing for expensive procedures, hospitalizations, etc.

3. If my son/daughter receives SSI and I am paying deductibles, etc. for the times s/he uses my insurance, does the Social Security Administration count those payments as providing financial support, thereby jeopardizing the amount of his/her SSI benefit?

I have asked this question of a disabilities benefits expert and was told the answer is “No.”

4. How well does Medicaid do in covering mental health services?

The range of  mental health treatments covered by Medicaid varies by state. The ratio of providers to the number of patients needing treatment also varies locally. To those of us “climbing the cinder cone”, inadequate mental health coverage is potentially a big problem. Click on this link to see what the Medicaid website has to say about mental health services.

Additionally, this article indicates that the recent expansion of Medicaid in some states will result in a large influx of patients seeking mental health services. That probably translates to a greater lag in getting appointments in a system that already has staff shortages and waiting lists.

A few years ago, when Nathan was enrolled in the Medi-Cal Health Plan that we chose, I was informed that the plan did not cover mental health services. A quick Google search shows that the plan now has behavioral health services, and is seeking to add providers. When I look at the “Find a Specialist” list on the website, the relevant categories I see are: Autism Specialist, Licensed Clinical Social Worker, Marriage and Family Therapist, Psychiatrist, and Psychologist.

***

Clearly, this is a huge topic that one measly blog post can’t do justice to. So in closing, here are some more potentially useful links:

For a Q&A regarding the ACA provisions for young adults in general:  http://younginvincibles.org/issues/health-care/faq/

To learn more about Californians continuing on parents’ health insurance past the age of 26, and other topics, click here: http://www.fickewirth.com/cmsAdmin/uploads/pressroom/california-dependent-coverage-laws.pdf

The Medicaid Reference Desk (which is down for maintenance at the time of this post)  is designed to help people with intellectual and developmental disabilities understand what Medicaid has to offer them:  http://www.thedesk.info/

This has lots of links about SSI and Medicaid:  http://www.autismhandbook.org/index.php/Applying_For_Social_Security_And_Medicaid_Overview

 

 

 

 

At the 2-year mark: a look back, around, and ahead

footprints going up a cinder cone

footprints going up a cinder cone

Milestone alert:  Climbing the Cinder Cone is now 2 years old!

As other bloggers will attest, maintaining a blog is its own little climb up a cinder cone – it takes time and effort, but not at all unpleasant, with nice scenery (the things I’ve learned) and some great companions (you, dear readers). It’s been a journey with some successes, some stumbles, some surprises. Thought I’d take the opportunity to share some of the behind-the-scenes information about this diminutive blog.

In a happy coincidence, as the Cinder Cone is having its second birthday, it also just passed the milestone of 4,000 all-time “views”. Yes, some blogs get that in one day, but this isn’t one of those blogs! And the Cinder Cone only passed the 3,000-view milestone in October. Therefore, it has gotten 25% of its views in just the last four months.

The blog post that is most responsible for the surge in views might surprise you, seeing that it has no “likes” and no comments: “Can you enlist in the military if you have ADHD?”  Since shortly after it was posted in September, it has consistently been the leader in daily views. That post now turns up on the first page of a Google search if you use appropriate search terms. (I tried it myself!)

Other Cinder Cone topics that have gotten more than 100 all-time views include: SSI payments; the SPECT brain scan at the Amen Clinic; the link between nutrient imbalances and mental disorders; diagnosis jargon; and EMDR therapy.

Moving forward, we’ll see how many other topics I can find with equally broad appeal. (It turns out I don’t have a great track record for predicting which posts are well-received and which ones land with a thud.) Requests and suggestions are welcome ….

Meanwhile, here are some subjects for posts that you can expect to see:

  • Special needs trusts
  • Health insurance for young adults
  • ADOS evaluations
  • Regional center
  • Employment assistance from the Dept. of Rehabilitation and other facilities
  • Employment prospects
  • Dealing with suicide threats
  • Alternative therapies, such as neurofeedback and TMS (transcranial magnetic stimulation)
  • Follow-ups on previous posts

It’s possible we could also get into discussions about medications, post-secondary education, and so forth. For now those ideas are in the background, because I think other, more prominent sites do a thorough job on those topics already.

I’m also interested in interviewing experts, service providers, and so forth. However, I’m holding back on that until the Cinder Cone gains more readership, to make it more worth the time of an interviewee.

On the subject of readership: I so appreciate everyone who has signed on as a subscriber! Hopefully, few of you regret it (“Let’s see, where is that ‘Unsubscribe’ button?”)

The “dashboard” of a blog shows the blogger many interesting things, including which nations the blog’s views came from. Even this niche blog has been viewed by readers in 53 countries on six continents! (And maybe some day researchers in Antarctica will stumble across it accidentally.) In descending order, the top countries for views are the US, the United Kingdom, India, Canada, Australia, Republic of Korea, and the Philippines. The Cinder Cone has subscribers on 3 continents, from many different walks of life, which is also very cool.

To support the blog, a little over a year ago I started a Facebook page for Climbing the Cinder Cone. It serves two purposes: to notify followers on Facebook that a new post has been published, and to share links to relevant items from other organizations and individuals  – much like the “Worth a Click” feature on the blog’s sidebar.

The Facebook page doesn’t seem to have caught on very well; most items on it do not get any “likes”, comments, or shares. Maybe people really do read them, or maybe they scroll right past them. Whatever the case, I’ll keep maintaining the page, at least for a while.

So here at the two-year mark, there is not much call for resting-on-laurels. The “community” the blog aspired to has not yet formed. Certainly, there are a lot of folks living with or assisting atypical teens and young adults, and they are the target audience. Maybe they are too busy and exhausted dealing with the reality to read about it! (I can definitely relate to that.)

For the future, the trick will be to keep trying to improve and expand the blog’s contents and presentation. Hopefully that will attract more readers, supporting the ultimate goal: helpful information finding its way to the people who need it.

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