Q&A: Prepping Kids With Disabilities For College

Roger Diehl at his grandmother's house near the University of Wisconsin-Madison. i i

Roger Diehl lives off-campus with his grandmother in Madison, Wis. He and his parents, who live in Nashville, Tenn., decided it was important for Roger to have family near him while he attends college. Jerome De Perlinghi for NPR hide caption

itoggle caption Jerome De Perlinghi for NPR
Roger Diehl at his grandmother's house near the University of Wisconsin-Madison.

Roger Diehl lives off-campus with his grandmother in Madison, Wis. He and his parents, who live in Nashville, Tenn., decided it was important for Roger to have family near him while he attends college.

Jerome De Perlinghi for NPR

Hear Roger Diehl's Story

In one way or another, Roger Diehl has been preparing for life as a college freshman since preschool. But the University of Wisconsin-Madison student has had to do a little more work than others.

Diehl has Asperger's, a form of autism, and attention deficit hyperactivity disorder (ADHD). He's also suffered from depression, with his first bout occurring as early as 3 years old, says his mother, Sita.

Diehl, now 18, has had help from his parents, grandparents and school staff to help him make this transition work. He and his mother told their story last week on Morning Edition. Here, Roger and Sita Diehl, who runs Tennessee's National Alliance On Mental Illness (NAMI), answer listeners' questions about what their family did to help Roger, and offer advice on how to help kids with mental illness or learning disabilities get ready for college.

If you could give your 10-year-old self any advice, what would it be? — Seattle

Roger Diehl: I would tell him that learning social skills is difficult, but not impossible, and that he should not sacrifice his personal interests to fit in. I would tell him that if he continues to focus on his strengths while making an effort to learn the rules of society, his strengths will eventually be valued enough to outweigh his abnormal personality. Basically, I would tell him that being a nerd is perfectly OK.

As you were growing up, what motivated you to further your educational goals? Can you recall what your mother or family members did to inspire you to pursue college? Los Angeles

As far as I can remember, I have always felt that academics were the area in which I could excel the most. Whatever weaknesses I had, I knew how to learn. All my parents had to do to motivate me to go to college was to present it as an eventuality, like high school. I saw continuing my education as a way to take advantage of my strengths.

Do you feel like you made a good decision to go away to school? Is living with your grandmother working? — Salisbury, Md.

I have not regretted my decision for a moment. Whatever challenges I may face at college, I am confident that going to an academically challenging school is the best way to take advantage of my strengths. As for living with my grandmother, it is working very well. It gives me a place to be away from the hustle and bustle of university life.

Can you recommend any resources for other students in a similar situation to help them accept and learn to take responsibility for their strengths and challenges? — Oakland, Calif.

While I cannot recommend any resources specifically for the purpose of helping students be more comfortable about their mental conditions, I can say that books regarding any interests an autistic student has are helpful. I feel the best way to use resources is to encourage the student to be proud of his or her strengths. In areas the student finds challenging, find a context for the student to develop where the consequences of failure are very minor.

My daughter has bipolar disorder and is applying to college. How do I start to build a long-distance support system for her without any family in her college's area? — Nashville, Tenn.

Sita Diehl: It's a big decision sending someone out who is vulnerable to a place where you don't have any natural support. You may want to rethink that, because there's really no substitute for family and longtime friends.

I think many families are working on this script: 'I've got my child to 18, and now I'm sending my child out the door,' and you're kind of just crossing your fingers. But families need to think that through more and find a place where they have family and good friends they can have on duty to just check in, give a home-cooked meal, and see how thing are going — if the student has lost weight, things like that.

Secondly, contact the area's NAMI office. There are often kids who are on campus and know the ropes, and NAMI can help put you in touch. You may be able to help your child build a social support system before she gets to school, by setting up e-mail or phone relationships with these other students.

How can I find out which colleges have better support systems for kids with learning disabilities or depression? — Hoagland, Ind.

I don't know of anyone who rates colleges based on their support systems. I know it's a grassroots approach, but there is no substitute for going to the college's disability office and asking what kind of support they offer. We visited all four colleges Roger was interested in to feel the campus culture and determine how he would fit in.

Did Roger have special education resources as an elementary student? Can you tell me a little more about his school experience as a younger student? — Cincinnati

Roger flunked out of preschool. He had every problem you could imagine — he couldn't sit still, he made noises, he didn't make eye contact with other kids. One day I came to pick him up, and the school administrator was holding up some soiled clothing and said, 'Could you not bring him back?'

I was in graduate school at the time, and I went home to my husband and said 'I'm going to have to quit school.' And he said 'No, you're not, call your mother.' So I did, and she came to stay for awhile, and then after that, my mother-in-law, who Roger lives with now, came to stay for six months. All of the family just really pulled together to help. We put him in a Waldorf school first, and then a Montessori school, and my mother-in-law was his in-class assistant. And Montessori worked really hard to make him comfortable with his environment, and he stabilized. That's key with Asperger's: Once a kid is comfortable with his environment, things go better.

NPR: Any advice for parents who have children in public elementary schools?

By federal law, schools have to give students with special needs an [Individualized] Education Plan. The problem is the IEP is an unfunded mandate, and schools don't have the money to pay for everything kids with learning disabilities need.

So when Roger went into public high school, I took in muffins and orange juice. Don't treat these meetings like a court room. Do your homework and know what resources could be available, and go into meetings with an attitude of respect and gratefulness for their hard work. Teachers are in this field because they want to help kids, and it's important to remember that.

Are you aware of any formal programs that have been developed for use on college campuses to give group or individual support, especially in the social arena, to young adults with developmental disabilities? — Durango, Colo.

Yes, Active Minds is a nationwide student organization focused on mental health. And NAMI has local affiliate support groups on campuses. They provide great support, especially in stressful times.

Are there financial resources available to help students with learning disabilities or mental illness pay for college? — Elgin, Ill.

Yes. Try your state's Department of Vocational Rehabilitation. They will help pay, depending on your income. Eli Lilly has a scholarship program specifically for people with severe mental illness. Also just Google the word 'scholarships.' There are tons of them, and many of them do focus on students with learning disabilities.

What were the most significant roadblocks you encountered once Roger made the decision to attend college? — Hudson, Ohio

We didn't have that many roadblocks, but that's because we had watched many other families encounter roadblocks, so we knew what we were going to do. And that was to make sure that we had the legal documents in place to make sure we had treatment options for him set up at his school. And we made sure to help him think through very consciously where he was going to find friends. Other than that, we had the same old problems, like how are we going to pay for this?

NPR: Is there a checklist online regarding all of the paperwork you prepared for Roger's legal transition to adulthood?

NAMI has a whole page now on the transition to college. And there's also a program called Transition To Independence. It typically does not focus on kids going to college, but it does have the legal documents lined up. And any attorney who deals with youth should be able to pull these things together; it's very standard stuff.

In addition to a living will, there are advanced directives — sometimes they're called mental health plans. Someone, usually not a family member, interviews the young person, asking: 'If you start to get stressed out, what are the early warning signs? What do you want to be done for you, and where do you want to go for treatment? Is there anything in particular you don't want or anywhere you don't want to go?"

And you give copies of this document to mental health centers, the school's Office of Disability and, if the student chooses, to the family.

The idea is, especially with mental illness and psychosis, that by the time people notice you are psychotic, it's already too late for them to ask you how you want your treatment handled. Advanced directives are a way to make sure a young person's wishes are followed as closely as possible; it's guidance for treatment providers and for the school.

There's also a wonderful little booklet, the Wellness Recovery Action Plan, by Mary Ellen Copeland, and it goes through this process in detail. It's available online and in bookstores.

Do you have advice for students on how to interact with their academic advisers and faculty who may have neither the knowledge nor the interest in dealing with people who are not, as they say, neuronormals? — Tempe, Ariz.

It's best to be up front about it, but it depends on how noticeable the disability is. Someone with bipolar disorder or who has schizophrenia may not want to come right out and say it.

Roger, because he has these physical behaviors and odd facial expressions that come along with his autism, knows he might as well tell them what's different about him, so they know there's nothing to worry about. He's learned this over time, and so far that strategy has been successful for him.

The key is not to skulk around in shame, but to be very straightforward about it. Whether they talk with an adviser or not, they should absolutely register with the school's Office of Disability.

My son is a 19-year-old college student who has struggled with making social connections all his life. He rarely talks to people at school, eating alone and spending weekends in his room. What can we do as parents to help our son live a happy and successful life?

The first thing is to ask him what he wants. If he wants to be alone, I think that needs to be respected. If he doesn't want to be alone, try asking him to see a therapist to help him figure out what it is he wants. Often, people who are very lonely don't have the emotional vocabulary to articulate to themselves what they want. They just think, 'I'm lonely.'

So get a therapist to help him work through this and set goals for himself. There are probably therapists at the student health center. And it's worth asking around to see who has a reputation in the private community for success with young people.

My daughter has recently been diagnosed with schizophrenia. She is a high-performing high school senior about to apply to some of the nation's top universities. We are not sure how to approach disclosure to these institutions. Should we be up front from the start and risk that this will stigmatize her, or do we wait until she's been accepted? — Healdsburg, Calif.

We were upfront. We put it in the application, but we also said we don't need any help. We said, 'This is the situation, but right now everything is stable.' And he wasn't turned down by anyone.

Ironically, at the University of Wisconsin-Madison, the admissions counselor said, 'Have you thought this through really carefully? Are you sure you want to come to a big university?' And we said, well yes, because Roger thrives when he is academically challenged, and because we have family here.

The counselor was a little less than warm and fuzzy, but Roger was accepted. That said, you may not want to disclose in applications that she has schizophrenia, because you're right, it is very stigmatized. But after she's accepted, go straight to the Office of Disability and say, 'I'm here.'

I am a speech-language pathologist specializing in Asperger's syndrome with high school students and young adults. What would you suggest doing in order to foster supportive relationships for these AS students with community colleges and four-year colleges? — Bakersfield, Calif.

I always start with the Autism Society. They usually focus on children, but increasingly adults with Asperger's syndrome are coming forward. They have a lively Internet conversation and could have some good advice.

It's a good idea also to get the special education staff from the high school together with the disability offices from the colleges and say, 'These are the needs, so what can be done?'

Edited by Vikki Valentine

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