prepping kids for college with disabilties

November 22, 2008

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Your Health

Q & A: Prepping Kids With Disabilities For College

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Diehl lives off-campus with his grandmother in Madison, Wis. He and

his parents, who live in Nashville, Tenn., decided it was important for

to have family near him while he attends college. Jerome De Perlinghi

for NPR

Hear Diehl's Story

Sep. 11, 2008

An Autistic Student's Journey To College

NPR.org, September 17, 2008 · In one way or another, 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, and Sita Diehl, who runs

Tennessee's National Alliance On Mental Illness (NAMI), answer listeners'

questions about what their family did to help , 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

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 was interested in to feel the campus culture

and determine how he would fit in.

Did have special education resources as an elementary student? Can you

tell me a little more about his school experience as a younger student? -

Cincinnati

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 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 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 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 '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 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.

, 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 thrives

when he is academically challenged, and because we have family here.

The counselor was a little less than warm and fuzzy, but 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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