Author Archives: ldecrescenzo1

Looking Up

When I started thinking about this blog, I wanted to write about my challenges with my son during 2017 because it was a year of many challenges and changes.  Over the New Year holiday I saw so many friends’ posts on social media about what a difficult year 2017 had been for them for a variety of different reasons.

I think 2017 was a difficult year for many of us.  It is hard when everything changes without warning and you are left feeling like someone pulled the rug out from under you.  When the place you were once comfortable in is now gone, you wonder if anything will ever feel “normal” again.  I think 2017 left a lot of us in that place.

At first, I was really mad at myself because I did not see it coming, but in honesty, it wouldn’t have made a difference.  Keeping everything in perspective, what I consider challenging was a year full of changes, the introduction of medication, and a new school with new faces.  The reality is we are all still here and healthy and after what some of my friends have been through this past year, I want to be respectful of that fact.

So I find myself in a new role as a parent of a young adult and this is the hardest one yet.  Knowing when to push and when to step back is tricky.  I remember being 19 and thinking that I knew it all and wanted to be independent of my parents.  How do you balance that for a young adult with ASD who does not have the skills to be totally independent but is somehow pushing against everyone and everything because of the frustration presented by the challenges of their diagnosis?  What do you do when your child, who already has limited access to parts of the world, makes it even smaller by their behaviors?

So for now, I take each day one at a time and deal with what each day brings.  Not every day is bad.  We are actually a long way away from where we were one year ago.  Finding a place for my son in this world as an adult will present different problems at various times.  Behaviors exhibited by a 3 year old are not as cute when displayed by an adult with ASD.  Knowing if it is a good day to take him out versus staying home…is learned through trial and error.

Over school break my son repetitively watched the movie “Sing”.  I always seemed to walk into the room as one of the characters was saying “You know what’s the great thing about hitting rock bottom? There’s only one way to go and that’s up!”

So that is my goal for 2018….looking “up”.  “Up” to me means learning from each experience from last year, applying new strategies, and knowing that each day is a new day.  That planting seeds to produce new behaviors takes time.  Recently, I have learned so much about anxiety and self-regulations that I don’t feel so overwhelmed by the behavior challenges but more empowered or at least educated to understand them.  “Up” to me isn’t that the problem is solved but that it doesn’t leave me with my head spinning and feeling helpless.   Each new tool in my toolbox allows me to climb one step higher out of rock bottom.  I don’t know how far it will take me but I like the direction it is leading me.

My hope is that if you struggled during 2017, this upcoming year is full of peace and joy.  I hope you took something from the challenges you met with last year and can somehow apply your own version of “up” to 2018.

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Doing It The Right Way

This blog is written by Dennis Polselli, Publicity Coordinator at CAR.

Because of my total blindness and having spent 14 years in a school for the blind, before the president of Framingham State University asked me to establish a Disability Services Office, I wanted nothing to do with being pegged as a Disability Services Director, or Coordinator.  However, my experiences led me to get involved in Disability advocacy organizations for both the Blind and what we call, “Cross-Disabilities.”  For 15 of the 26 years I worked at Framingham State University, I was very proud to be a Disability Services Coordinator.  I had accepted that role and I was determined that as long as I was to have such a title, I was going to do it the right way.  I’m not sure that I always did, but I was there for 15 years.  I believed that the position was to advocate for students and employees with Disabilities. Everyone has the right to have the same access to all that the College had to offer from Academics, to the social experiences.  I found that professors were better at accepting the concept of providing accommodations for persons with Disabilities. The individuals who run the extra- curricular activities were a different story.  In some cases I felt that what they could provide was even more important to some degree, than academics, because extra- curricular activities can provide opportunities for resume building.

Another area that I always had problems with was the process for determining who got accommodations.  Colleges and Universities require documentation, specific diagnosis of the Disability from doctors, social workers, clinicians etc.  I never felt qualified to make those determinations and I wonder if some of the College personnel had the necessary training particularly when it came to such conditions as the Autism Spectrum Disorder.  Did we as an institution really know enough to make the necessary accommodations or to accept or deny accommodations?

An interesting concern is whether or not to involve the parent or guardian of the college student in determining what’s best for the person with a disability with respect to accommodations.  It was the College or University’s position that students needed to learn to navigate problem solving without parent or guardian, but I always felt, that depending on the Disability, it was appropriate to initially involve the parent or guardian in determining what kinds of accommodations were necessary to make the College experience better for the student both in and out of the classroom.  Once the determinations were made, then it is important for the parent or guardian to step back and give the student the opportunity to learn the necessary self advocacy skills.  In the end, I believe that Disability support services on campuses should involve day-to-day organizations and agencies that serve individuals with Disabilities, including contracting for services with these agencies such as, Autism Support Centers, centers for Independent Living and places like the Perkins School for the Blind.  I also believe that the most important phrase in the Americans with Disabilities Act, and other regulations governing Colleges and Universities, are the words: “Case by Case.”  There is no one size fits all.  That is how I view, “Doing Disability Services Right.”

Turning 18!

This past year has been extremely busy!  My son with ASD turned 18 at the beginning of the Summer and that event sent my life into a whirlwind of things to get done.  It looked a little something like this:

  1. Prior to turning 18, I had started the application process with DDS to reapply for my son to be eligible as an adult. I was fortunate that this timeline coincided with his 3-year evaluations at school, so a lot of the requested information was taken care of with this testing.  If your child is around 16/17 you will want to reach out to your DDS family coordinator and get the information you will need about this process.
  2. Since my son will be unable to get his license, I took him to the DMV to get a state identification card. I found out I could have done this at the age of 16 but we got it done and it was fairly easy.    Check out the DMV website for all the details.
  3. A couple of weeks prior to his birthday, I started the process to apply for Social Security for my son. I am glad that I did this prior to his birthday.   If I had waited until after he turned 18, they would have not talked to me because I had not yet received guardianship for him.  With his approval for Social Security, he automatically received MassHealth insurance – no application process needed thankfully!
  4. This is a very personal choice.  It was the best fit for my son and his needs.  I got all the forms online from my local probate court and was able to do this process on my own.  I would not recommend this for everyone, but for me, it worked.

The Summer was all about paperwork and forms.  Luckily, it was never too overwhelming but it does force you to get organized and know where all the documents you need on your child are located.

The highlight of the Summer for me was my son’s 18th birthday party.  It was the first party we had ever held for him that was held outside the home and attended by friends and family…. not just all family.  What a night!  It was fun and sort of a celebration for me and my husband.  We had survived the last 18 years and were better for it.  It was as if the past 18 years had all come together in one night with family, old and new teachers and current friends!!  I friend of mine but together a photo album for my son.  When each person arrived at the party, we took their picture and handed them an index card to write my son a birthday message.  After the party, she put all the photos and index cards together and formed a photo album that, 3 months later, he still looks at daily with a smile.  I wanted him to have a visual memory of this party and it was the perfect gift!

I guess my hope in writing this blog is to get the wheels turning for parents/guardians of children with ASD who will be celebrating their child’s 18th birthday soon.  It is a time of a lot of change and the sooner you can get a grasp on what may need to get done, the easier it will hopefully be for you and your family.

The 5 Hardest Things about the New School Year

Community Autism Resources is pleased to have a Guest Blogger this month.

Matt O’Keefe provides his perspective on returning to school.

Matt O’Keefe is a freelance writer whose clients include a vocational school for those with learning differences Minnesota Life College, personal development site Lifehack and entertainment news blog The Beat. Visit mattwritesstuff.com for news and musings.

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Starting up school again is daunting for a lot of students. They’re transitioning from a system that they slowly grew accustomed to over nine months, followed by a summer off, to now face a brand new status quo. Having learning differences compounds the struggles of a new school year, which is why parents of young adults who have them should be aware of what their loved ones are going to have to learn to deal with. Here are five changes students, like the ones at the vocational school Minnesota Life College I write for, will experience in a new school year, as well as some quick tips on how to handle them.

  1. New teachers

What kind of teachers they have drastically impacts how well students with learning differences will adjust to the new school year. One possible strategy for making that adjustment as smooth as possible is to be very open about your loved one’s learning differences. If you have any control over the selection of the teachers, look for people sympathetic to your plight. If you don’t, at least let the teachers know what kinds of things they’ll need extra help with. Not all students and parents need to have a close relationship with their teachers, but you and your young adult likely will.

  1. New schedules

In a single school day students typically have to go to around five or six different classrooms. Students with LD will often struggle to remember where to go and when. The solution to this problem is a pretty simple one: writing it down. Your loved one can use a notecard, piece of paper, phone, etc., to record when and where their classes are. If needed, you can even help your young adult draft a map of the inside of the school.

  1. New subjects

Every year of high school usually sees some kind of change to the curriculum. The hope is that teachers will take the time to introduce students to new subjects at a manageable pace and make the material exciting for them, but that isn’t always the case. If your loved one is struggling to get a handle or interest on the new subject, you can teach it to them with something other than the assigned textbook. For example, if your young adult is struggling with Biology class, show them Planet Earth. Give them something that gets them excited or invested in what they’re learning.

  1. New social groups

Possibly the most difficult change for students with LD that occurs each quarter or semester is the change to the group of classmates they’re paired with. That frequent mix up means new social situations on a regular basis. There sadly isn’t much you can do to manage this other than teach your young adult the social schools to befriend or at least get along with the people they’re sharing a class.

  1. Increased responsibilities

Moving up a grade generally means that you’re going to have more homework, increasingly difficult tests and all kinds of other challenges. Hopefully the incline isn’t too steep, but if your young adult is having trouble keeping up with their new responsibilities there are a few options out there for you. You can remove parts of their schedule that aren’t as paramount as education, like extracurriculars. You can take advantage of tutor programs. Or, again, you can open up a stream of communication with your young adult’s teachers to learn directly from the source what will benefit the student.

A new school year isn’t always a smooth transition. For someone with learning differences it rarely is. Hopefully this list does something to help prepare you for it!

A Disability Insider’s View of Colleges, Universities, and Community Colleges

This Blog is Written by Dennis Polselli, Publicity Coordinator @ CAR

This is the first of at least two blogs dealing with a view of Colleges and universities from a Disability insider’s view.  In the first Blog, I will give you my brief background.  In the second, I will give you some tips on how to navigate Campus life and how to use the Disability Services office as a source of advocacy. I will also have information on how to involve parents of students with Disabilities, and when parents need to step back and trust the university, as difficult as that may be.

I worked in higher education administration for 29 years beginning at Syracuse University where I obtained my masters degree.  During those two years, I was appointed the first blind person as Resident Assistant in two large Resident Halls.  I had the Resident Advisor’s manual put on tape from a friend I met at Bishop Connolly High-school.  I went the summer after my graduation from Stonehill College to Syracuse University.  After that I was an assistant Resident Hall Director at North Adams State College, now called, Commonwealth College where I was responsible for running the Residence Halls on most weekends overseeing Resident Assistants and Student desk workers.

I started working at Framingham State University in 1983 and was a staff assistant in the Housing office training student desk workers and Resident Assistants.   In 1994, the College President asked if I would establish a Disability Services office for there was none at the time.  I set about doing that.  I authored a Disability Services Handbook, I hired reader assistants to record textbooks for students with print disabilities, and I scheduled and hired ASL interpreters for deaf students.  I quickly learned all about the shortage of ASL sign-language interpreters in this state and how many classes went unfilled; deaf students had no services during many classes because of the shortage.   I established Computer transcribers, people in the community who were fast typists who utilized laptop computers and could type word for word the lectures from the professors and they were paid twenty dollars an hour.  The going rate for CART reporters was around 120 dollars an hour and what I came up with was far less expensive and just as effective.

When the university faced budget shortages, I had to make sure we were complying with the Americans with Disabilities Act, (ADA) and provide the necessary accommodations.  I went to MCI Framingham to see if I could get the women inmates involved instead of paying reader assistants ten dollars or more an hour and was able to reduce cost and still provide the recording of textbooks by utilizing the services the women of MCI Framingham could provide at no cost to the College.  When students besgan using E-books and scanned textbooks, I obtained the services the women could provide as readers for the Radio Reading Service I started for Blind persons.  The radio reading service was a community outreach program that provided the reading of daily newspapers, books and magazines on the radio along with disability related information.  The parent network dealt with Blindness issues, and I covered other disabilities.  One book I broadcast was “In Their Own Words”, by Siblings of children with Autism Spectrum Disorders, by Community Autism Resources.

As mentioned in my opening, in the next  blog, we will get down to business and get into some tips on how to navigate the campus, get the services you need, and work as a team with the Campus Disability Services office.  Two clues should be mentioned in closing:  First, the ADA does _not require a formal disability Services office it only says that the institution must provide reasonable accommodations in order for the student with a disability to participate in all the programs and services offered by the Institution.  And the second, the responsibility for accommodations shifts from a school system, to the student him or herself.

“C” is for Community

Here at CAR we have some great resources.  They include a multitude of items and without trying to sound like a public service announcement; they allow us to provide some really useful information to our families.  One of my favorite resources at CAR is the referral lists.  I have been using them throughout the years myself when looking for dentists, eye doctors, recreational programs, etc. for my son.  I love when we are able to help a family by providing them with a referral list that will point them in the right direction when looking for a resource for their child.  We have been very fortunate as an organization because so many people have contacted us to tell us about a great doctor, dentist, etc. that they have successfully used with their child.  We compiled all this information and created these lists and update them periodically..

In my position at CAR, I organize and plan all the monthly Family Events, Sensory Programs and Social Skills Groups.  It’s a lot a fun, but the most challenging part of this position is trying to spread out the programs so that they move around our region.  Our region is comprised of 88 cities and towns within the South Shore, Southeastern and Cape & Island regions of Massachusetts.  It’s a big area and the fact that I grew up in Rhode Island and am not familiar with all these areas does not help matters.

Recently I was speaking with a Mom on the phone and asked her what types of activities her child enjoyed and asked if she knew any businesses in her area providing these types of classes for children with ASD.  Out of that conversation, I got two very good leads for possible programming in that area.  Running programs is not as easy as it sounds, because the individual(s) running the program must have experience working with individuals with ASD and must be staffed properly.

We recently ran a yoga program in Easton that was not initially popular.  It would seem that we targeted the wrong age group, but luckily a Mom contacted me and told me her son would enjoy a yoga class but was too young for the originally advertised class.  After only one person signed up for the class, I spoke to the instructor and we ran the advertisement again targeting a younger group.  This class was so popular that it filled to capacity.  All because this Mom contacted me about her son’s interest.  A few months later, the same Mom contacted me with some information about another activity and since then I have already been to the new organization and am in the process of planning a Family Event there for next year.

These experiences have taught me an important lesson.  I can spend hours doing Google searches to try and find organizations servicing the ASD community, but the best information comes from our families.

I hope that you will feel free to contact me at any time to let me know of a fun activity that you have experienced with your family or a great program your child with ASD is participating in and enjoying.  The fact is we are a large area and it is not realistic for me to know every business/organization in this region that can provide quality classes/activities for our children.  The “C” in CAR stands for COMMUNITY and I know that if we continue to work together as one, we can continue to provide quality programs, activity and family events to all that we serve.

“Letter to Me”

I was recently listening to a song by Brad Paisley (the country singer) entitled “Letter to Me.”  The song starts with “If I could write a letter to me, And send it back in time to myself at 17.”  The song goes on to describe what he would tell himself at that age from the perspective of being older in the present time.

This song got me thinking about myself and my son.  My son will be 17 in a few weeks and I thought to myself . . . what if I wrote a letter to myself the day he was diagnosed with autism, what would I say?

It has been almost 15 years since my son was diagnosed.  I remember it clearly and that emotion I felt that day comes easily when I reminisce.   In actuality, it is not the day of his diagnosis that floods me with the most emotion.  It is the day a friend gave me a copy of the DMS-IV Diagnostic Criteria for Autism and I knew without a doubt that this was the disorder that my son had developed.  The diagnosis only confirmed my worst fear.

So, what would I say to that stunned parent on that day from all that I know now?  I have been pondering this for a few weeks.  What I can honestly say is nothing.  Maybe I would just remind myself that this boy was my son and not a disorder.  I would probably assure myself that my family would rally around us and love him, actually love “us”, just as the days prior to the diagnosis, if possible, even more.

I guess what I am trying to say is that some things are meant to be discovered along the way.  If I knew everything in that one day, I would have been overwhelmed.  When I think about our lives for the past 15 years, everything has come in phases, both good and challenging.

I guess if I had to write something to myself that day, it would be this. . . .You are stronger then you think and learn everything about autism that you can.  Truly understand why your son does what he does.  This disorder is not just about not being able to speak, there is so much more to it.

When I first took my position at CAR, I really wanted to be able to help parents whose children were newly diagnosed.  I thought I really had something to offer since I had been through the same experience.  I knew how terrifying it can be at first.  But what I find in speaking to these parents as they get emotional and are beyond scared, is that I am most often silent and just listen.  I find myself saying frequently, “Just take it one day at a time.”

I think our motto at CAR says it best … .A place to start. . .A presence on your journey.

The reality is that words alone cannot make this better.  Nothing I can say will change anything, but if I can make anyone feel less alone and connected to a community of others affected by autism, I believe that I have started them in the best place to begin their journey.