Transition to College for NLD Students

Visit to CIP Bloomington

My husband, son and I recently visited CIP Bloomington.

Bottom line summary. Visiting CIP helped on two fronts: 1) our son is more confident in thinking about college because programs like CIP are there if he ultimately concludes that he is not ready for college; and 2) it helped me re-frame my thinking. For now, at least, I don’t consider CIP Bloomington a “transition” program to help our son become successful in the Bloomington college community (i.e. Indiana University).  I, instead, consider it to be a program that might serve as a stepping stone  towards a smaller 4 year college -- likely located closer to our California home.  Towards that end, we will continue to look at colleges, and now have the option of doing so knowing that CIP might be one of several resources that our son  could use along the way towards achieving that goal.

At a high level, my impressions were:

• Cold.  It was really cold in April -- snow flurries (but Easter weekend set record low temperatures in much of the U.S.).  The cold made an impression on our son, who has always lived in California.
• Lovely staff.  The CIP staff we met were lovely.  We were amazed by how many different people work in a program that has just 11 students.  This is the start up year and they are aiming to double in size for 2007-2008.  I would keep a close eye on turn-over after year 1, since that could say a lot about whether the staff believe the program is fulfilling its mission.
• Isolated from IU.  The CIP offices and apartments are close to the local community college.  They are a bus ride or long walk away from the Indiana University Campus.  3 of the 11 students this year are taking classes at Indiana -- anywhere from 1 to 3 classes -- and all are doing so as continuing education students.  Because the program is in its first year, there is no evidence, yet, of the CIP Bloomington students morphing their CIP experience into a 4 year college experience.  This year the CIP students, therefore, seem to be somewhat isolated from college life, but there are social connections among the CIP students -- they interact as a group in daily CIP classes as well as weekly potluck dinners.
• Apartments.  The apartment building is big.  From what we could tell, all the residents are college students.  The interior halls have the look of a dorm.  We visited one apartment.  It was quite nice.  Each student has his own bedroom and they share a kitchen and living area.  CIP provides the furniture.   Both the CIP residential advisor and a CIP student we met commented that the party scene in the apartment building can get loud and rowdy on weekend nights.
• Pluses.  Our son commented that visiting CIP relieved some of the anxiety he has experienced in thinking ahead to college, because it let him know that there would be people available to help -- with life skills, prescriptions, room mate issues, job searches, college enrollment and course work.  It seems to have provided a "safety net" for his further exploration of college options.  He knows that a program like CIP is there, but he also wants to continue to explore other options, such as small liberal arts colleges.  If we think of Bloomington as and intermediate step to prepare our son to attend a small 4 year college -- a chance to take some community college classes and make some progress on independent living, then this may be a good choice.
• Minuses.  Because the program is so new, if was hard to determine whether the CIP students will integrate into the Bloomington college community, or whether this program is best viewed as a stand-alone 1 to 2 year program.  I can't really see our son succeeding at IU, and I wonder whether he would transfer the living skills gained in Bloomington to a whole new community when he is ready to begin a 4 year program.

CIP (College Internship Program)

“You’ve seen one Asperger’s student, and . . . . you’ve seen one Asperger’s student.”  (Jane McClure at December 2, 2006, presentation on “Post-Secondary Options for Students with Autism Spectrum Disorders.”)

My husband and I recently attended presentations by Jane McClure, an educational consultant, and Dr. Michael McManmon, the Executive Director of College Internship Program (CIP). 

Ms. McClure’s comment resonated with both my husband and with me – it is one reason why each NLD or Asperger’s student and his / her family will have to figure out what is right for them. 

So, I am going to put my thoughts about CIP in the context of what I think, at present, might be right for our son. 

Need for structure and clear expectations.  We have seen it both ways -- a highly individualized school experience for 1st through 8th grade and a far more structured experience for high school.  At this point in our son’s life, we think he benefits from structure and clear expectations (and, as noted below, our son seems to agree with that assessment).  My husband and I do not pretend to have all the answers about what structure will work best for our son.  We do know, however, that without structure and expectations, he tends to create a world that works best for him – one that does not require him to move outside his comfort zone.   

With structure and expectations, over a 2-1/2 year period, we have seen him move from resistance, to acceptance to mastery – of math, getting to and from school by himself, going to bed and getting up independently, taking responsibility for medications and getting homework done without reminders or nagging. 

From 1^st through 8^th grade, our son was at a very “child-centered” flexible school – one that truly celebrated each individual student.  He graduated from that school far more intact than many NLD students who survive middle school – he actually had friends, went on overnight field trips and had important roles in school plays.  However, he really never mastered tasks unless they were ones he enjoyed – math, reports, and writing projects all fell by the wayside.  The challenge for high school was clear – help him become a more independent learner.

After much testing, an educational consultant recommended a high school that focuses on NLD and Asperger’s students.  This school is also very nurturing, but, unlike the small school our son attended for 1^st through 8^th grade, his high school imposes a rigid structure and clear expectations. During the almost 2-1/2 years that he has been a student at this high school, his discipline as a student and his ability to take responsibility for his own academic success, have increased significantly.  As noted above, he also has accepted greater responsibility for some aspects of independent living – but the emphasis at the high school is on academics and self-awareness – living skills are the family’s responsibility.  It has been easier or for us to instill some “discipline” since he is learning discipline and structure at school – at least the approach has been consistent.

Sitting through the CIP presentation made me think that our son may make the most progress in gaining independent living skills if he is in a setting with structure, clear expectations and support.  In other words, support alone (someone who checks in on him and meets to “mentor” him) is probably not going to give him the sort of jump start he needs.  At the same time, conforming to someone else’s structure and expectations is exhausting for our son, as it is for most of us.  So, that probably argues in favor of a program that emphasizes living skills first and academics second, at least for awhile.

Cutting the steel umbilical cord:  Dr. McManmon identified what he referred to as the “steel umibilical cord” between Asperger’s students and their parents – their parents have served as social coordinator, academic counselor, college counselor, therapy coordinator, medications coordinator – and it is time to let go.  That is hard for most parents and for most students.  However, in McManmon’s opinion, there is a direct correlation between letting go and student success.  The students need to learn their own self-advocacy skills, and they can’t do that if their parents are hovering.  Assuming that Dr. McManmon is correct – then the only way I could get comfortable “letting go” would be if my son was part of a program that understood, and paid daily attention to, all relevant aspects of his life – food, study, social, health, emotions, technology, hygiene, medications, etc.  CLE claims to do this, and this is something that I would really focus on this during a visit.

What my son thinks:  I shared my thoughts that perhaps we should be focusing on a college experience that meets these criteria:  1) provides “structure and expectations” around living, social and academic skills; and 2) provides sufficient support to have all of us feel comfortable about “cutting the steel umbilical cord.” He agree with #1.  He wants to think more about #2 – I told him that’s okay – he has at least 18 months and many college transition program visits to help with that thinking. 

So, how does CIP fit in?

I think CIP is worth investigating further for our son – and we will likely visit the Bloomington site.  Although they plan to open a Northern California site in summer 2007, visiting Bloomington will enable us to see a “start up” center (they opened in August 2006) and also may help spur my son’s thinking (and his parents) about a location some greater distance from home. 

CIP Structure and Expectations:

CIP began its “intensive” Asperger’s / NLD programs 3 years ago.  It is too early to know if the CIP approach really  “works” but the curriculum seems to be well thought out.  Dr. McManmon reported that the Advisory Board meets twice a year to review the curriculum, and the members currently are working on a book about the post-secondary experience (with one chapter to be provided by each Board member).  The Advisory Board members are listed on the web site -- it includes a number of leaders in the field.  I don’t necessarily agree with each element of the curriculum, but I can see the benefit of requiring each student in the program to go through the same set of classes.  It goes back to the “structure and expectations” issue – Our son would know right away if some students could “get out of” certain classes. 

Today CIP offers 3 levels of programs; they are discussing adding a 4^th.  All CIP Asperger’s / NLD students begin with the highest level of support:  the “ASPIRE” program. This program (which is described in quite a bit of detail on the website) includes a curriculum focused on what I would call “living an independent and fulfilling life as an adult with Asperger’s / NLD.”   It is "intensive" and expensive -- $60,000 / year, exclusive of rent and college tuition.  The focus is on self-awareness and self-advocacy. Students might also take one or two college courses.  It sounded like the duration of the ASPIRE program varies from student to student, depending upon their needs – It could be one semester or even three.  Once a student “graduates” from this program he / she moves onto a program that focuses on either college or vocational schools combined with clinical and residential support (at present, annual tuition for these programs is $49,000 and $39,000).  The 4^th level they are talking about adding would be far less expensive than the so-called “intensive level” – more in the nature of individualized coaching following the A.H.E.A.D.D. model.

CIP Cutting the Umbilical Cord: 

For me – it comes down to whether they are actually doing what their curriculum calls for them to do.  I have certainly been part of organizations with elegant plans and spotty execution. There is no room for spotty execution if the parents and student have cut the steel umbilical cord.  I did like the fact that the focus in the Bloomington center is 100% Asperger’s / NLD, and they only took 10 students the first year.  By contrast, CLE takes students with a wide range of learning differences, and added more students to their Denver site this year – their first year of operation in Denver.   

CIP is considering Silicon Valley for their California location – the “San Jose / Cupertino corridor.”   That is pretty close to home for us, which could be ideal, but which also might make it harder to “cut the steel umbilical cord.”  I also wonder whether a small college town, such as Bloomington, might be a better intermediate step for achieving independence than would be the Silicon Valley metropolis – many cities loosely joined by sometimes spotty public transportation.  On the positive side, as has been quite widely reported in a number of publications, there is a high incidence of Asperger’s in Silicon Valley, including in a number of Silicon Valley companies.  My guess is that many executives in Silicon Valley have experience with Aspergers and NLD and would support the internship program – It could be a powerful combination.    Several parents at the meeting expressed concern about inadequate public transportation in Silicon Valley.   I assume CIP is aware of the importance of making sure the students can get back and forth to school – and there are buses, CalTrain, and light rail.  The location and ability of each student to navigate Silicon Valley, in general, will be a factor that we each will need to consider for our own kids.

Conclusion:  We definitely will add the CIP Bloomington center to our list of places to visit.  The CIP presentation also gave me some new perspectives on ways to frame the question about what sort of programs will be most likely to help our son achieve the goal of an independent and fulfilling life – college is a means; not an end.  The journey continues.

College Living Experience

Last night I attended a meeting with representatives of College Living Experience.  Here are the key take aways:

1.  Background. CLE started in Ft. Lauderdale in 1989.  Educational Services of America acquired CLE in June 2005.  They opened the Denver campus in August, 2006 (and I believe opened the Austin campus around the same time).  They plan to open a California campus in August 2007 and are evaluating locations now -- they look for a community college with broad course offerings and nearby 4 year institutions (within 10 miles) and technical schools, a large apartment complex with a vacancy rate likely to have a steady supply of openings for new CLE students, proximity to grocery stores, restaurants, etc. (many of their students do not drive), and a 5,000 to 7,000 sf business facility for CLE tutoring and back office operations very close to the apartment complex. 

2.  Success Stories.  In response to the question -- focusing on Ft. Lauderdale (which opened in 1989) can you desribe two successful tracks? -- the Director described 2 students:  one who had failed his first semester at college, stayed one year to develop some needed independent living and social skills, and then successfully returned to college; and one who was in the program for 5 years, graduated with a BA in sports management, had some internships with local sports teams, and, eventually, was hired as a full time employee by CLE.

3.  Cost and Financial Aid.  CLE is expensive.  Tuition for a 12 month year is $30,000.  That does not include the apartment (which, typically requires a 12 month lease signed by the family and landlord), collge tuition and additional living expenses.  They do offer financial aid through Sallie Mae, but we did not go into this in any detail.

4.  Boy / Girl ratio.  The mix of boys to girls is approximately 60 / 40.

5.  Program.  They focus on academic, social and living skills.  The Austin and Denver programs are modelled after the Ft. Lauderdale program, although they also give quite a bit of autonomy to the site director to do what it takes to make his / her site work.  Each site includes:  a full time psychologist, academic liason (who helps meet with professors, register for classes, etc.), mentors (doctoral students in psychology), academic tutors, and a "social director."  The folks I heard speak said they have a 2:1 ratio of students to staff at each site.  You need to check out the colleges they work with at each site, to see which location is most likely to be able to provide a course of study that works for your student.

6.  What if it doesn't work out?  The CLE representatives, said they require a 4-5 hour interview as part of the application process, including time with the on-site psychologist.  Sometimes, however, it turns out that the student is not a good fit with the program.  They said, under those circumstances, they will work out a refund, but I think that is something to probe in greater detail (and in writing).  Each contract is a one year contract.  I wonder if the refund philosophy only applies when it is CLE that decides the school is not a good fit (vs. the student and his family deciding that they made the wrong choice).

7.  Communication with parents.  CLE communicates with parents once a week -- they rotate that responsibility among the staff members, so the parents hear from a different staff member each week about how their student is progressing in that staff member's domain. 

8.  Admisssions.  Many of their referrals come from educational counselors, therapists, so, they said, much of the screening is done up front.  They admit approximately 90% of applicants.  They have programs to help students complete high school and to take remedial courses required to help them gain admission to a 4 year college. 

9.  Range of learning disabilities.  CLE is NOT exclusively for NLD / autistic spectrum kids.  Their marketing is geared towards:  LD, ADHD, NLD, Aspergers and PDD.  The students have a wide range of learning disabilities -- from those who probably do not have the cognitive skills necessary to attend college, and who will focus on vocational schools, to those who are very intelligent, but need help on living and social skills.  I did not hear any suggestion that tutors are specifically trained or equiped to deal with the particular academic / executory planning challenges of students on the autistic spectrum, so that is defintely something to probe further. 

10.  Miscellaneous Q&A.  There were a number of students in attendance.  They asked some of the best questions:

• [I lived in a group home for 2 years and saw a lot of melt downs -- ranging from temper tantrums to physical violence.  What sort of melt downs would I be exposed to if I lived at a CLE apartment] -- It took awhile for the presenters to "get" that he was asking about his physical safety.  The first answer was along the lines that "you will see as many different types of melt downs as you've seen before -- there is no one type of "melt down" that CLE students experience."  A presenter from Educational Services of America stepped in with a better answer along the lines that:  "we try to screen out kids with significant behavioral issues, that is not our target population."  That is something I would probe further.

• [How do you respond if a kid is "blowing it" -- like he just can't get up and get to class.  I visited another program that gives you 1 or 2 chances and then kicks you out with no refund.] The CLE presenters discussed their philosophy of working with the kids to figure out what's going on with them.  They are less focused on having CLE apply consequences (i.e. throwing the kid out of the program) than they are on having the student learn the real world consequences of his / her choices, e.g. failing a class, or making the decision to drop a class.

11.  Next steps.  I plan to visit both the Denver and Austin sites with my son, and, of course, the California site when it is open. 

Understanding the "non verbal" experiences that make colleges different.

I suspect my NT daughters will pick up plenty of gossip about "what really goes on at college," which are "party schools," which schools attract "nerds," etc.  I am pretty sure that my NLD son will not.

Last weekend my son started reading  a college guide from College Prowler -- advertised as "written by students for students."  You can check out the content on the web, as well:  www.collegeprowler.com 

The topics include academics, local atmosphere, campus dining, guys & girls, athletics, drug scene, campus strictness and overall experience.  There are some pretty funny observations and, whether accurate or not, they definitely capture the range of choices.  About athletics at Bard College (a school I attended for one year in 1974-1975 and still hold in fond regard):  "When you take into account that the majority of students here couldn't catch a gently-lobbed softball, it's not surprising that the college suffers from a lacking sports scene."

Even if you don't use this guide to help select a college, I was surprised by the power of the book to prompt discussions with my son about some of the complexities of college life and the importance of focusing on a few things that will matter the most to him. 

Different Tracks

At the orientation night for my NT daughter’s large public high school, the school handed out a one page chart showing the different curriculum “tracks” that will help take students where they want to go post-graduation: trade school, community college, state university, University of California system or “highly competitive” colleges – the top Ivy Leagues and Stanford.

It’s not so clear for a student with NLD. The curriculum track is one thing. The social and living skills track that seems to evolve on its own with NT kids, is a whole different thing. 

Thus far, I am focused on 9 realistic tracks for NLD kids during their first 2 years of college. With help from fellow parents of NLD students and, most importantly, from the students themselves, I hope to compile information on what the resources are and what’s working:

Community college:

· Live at home

· Live away from home in an apartment

· Live away from home with support services

Small 4-year college (under 5,000 students):

· Live at home

· Live in a dorm

· Live off-campus in an apartment

· Live off-campus in an apartment with support services

College specifically aimed at learning disabled population:

· Live in a dorm

Our daily allowance

A wise psychologist shared the following insight with my husband and me when our son was in second grade:  “We all start out with $5.00 in the bank each day.  During the course of the day we draw down that $5.00.  Hopefully, by the end of the day we have a little bit left.  If we draw it down too quickly, we ‘hit the wall’ before the day ends.  You might use up $0.25 deciding what to wear – but some days, that might use up $0.50.  You might use up another $0.25 commuting to work, but if you are running late and there is a terrible traffic jam, you might use up $1.00.  For kids on the autism spectrum, everything is harder.  Some days, just getting out the door might use up $4.00.  They’ve got $1.00 left for the day – and that means that at some point, they are going to hit the wall, and when they do, you need to just give them a place to regroup.” 

My husband and I see this phenomenon with all 3 of our kids (and ourselves).  Over time, we have seen our son learn more and more strategies for coping with life in ways that don’t draw down his daily bank account – like eating breakfast alone (without having to endure his sisters’ jabbering) and setting aside the exact same time for homework each day.  He accomplishes far more in a day than he used to, and rarely “hits the wall.”

But, what happens when he goes to college?   I worry that figuring out how to live independently, may be so overwhelming (at least at first), that he will use up all $5.00 on social and living skills, with little or nothing left over for the academic pressures that college brings.  Things that other kids take for granted – figuring out directions to get from one class to the other, remembering a schedule that changes each day and then remembering what to bring for classes each day, keeping track of money, remembering to eat, getting laundry done, these can be overwhelming tasks (at least at first) for a kid on the autistic spectrum.

My daughter, who is a freshman in high school, routinely forgets her backback, lunch and sweatshirts.  The phone rings at 9:30 or 10:00 many nights with friends trying to figure out their Spanish or Biology assignments.  So, these so-called "neuro-typical" or "NT" kids are also struggling with some of these life skills.  But here’s the big difference – within the first 2 months of school, our daughter has a network – they find her back pack and bring it to her, they call each other to figure out what the teacher expects on a given assignment, the sophmores share advice on how to stash your shoes at the dance so they don’t get stolen.  The "NT" kids figure out how to help each other.

Kids with NLD and on the autism spectrum, on the other hand, don’t know how to build these social and living skills networks.  Many don’t even feel comfortable using the phone.  What happens to kids who arrive at college with a disability that makes social and living skills their greatest challenge and that also makes it almost impossible for them to penetrate the support networks? 

So far, I’ve learned about 2 programs designed to help NLD kids with the social and life skills aspects of the transition to college:  AHEADD (which stands for Achieving in Higher Education with Autism / Developmental Disabilities) (http://www.aheadd.org/ ) and College Living Experience (http://www.cleinc.net/).

Our job, as parents, during the next 2 years, is going to be to help our son figure out ways to make that $5.00 daily allowance last all day -- through getting out of the house in clean clothes and the right materials, to finding class, to passing classes, to getting fed, to making friends.  We are looking forward to building a social network through this blog, to help chart the course.

Getting Started

I am the mother of a high school junior.  Like many juniors, he is starting to think about life after high school.  He would like to live away from home and attend college.  He also has a developmental disability, variously labeled "Asperger's Syndrome" and "Non-Verbal Learning Disability" or "NLD." There are 3 primary features of this disability, each of which adds complexity to decisions about college:  1) these kids struggle with social skills -- making friends, reading non-verbal communications, figuring out when they are being manipulated (or worse); 2) these kids struggle with planning and organization; and 3) these kids are prone to anxiety and depression.  There are also many interesting and positive features of this disability that can make college a wonderful experience -- many of these kids are very smart, they experience the world in a unique way and their deep and focused interests in varied topics means that college and post graduate learning may suit them beautifully. 

My son attends a private high school for kids with NLD, Asperger's Syndrome or High-Functioning Autism.  Many of the parents of Juniors and Seniors are trying to sort through the same college and transition issues that we are.  Thus, the reason for this blog.

I have no idea where this will end up.  I am starting with a simple goal -- to provide a place to share our information and experiences.