The Things You Miss

The Things You Miss

Patricia Leonard-Toomey

Many years ago my husband and I decided that the best thing we could do for our family was to have our daughter Devon remain living at home with us for as long as possible.  When she was 3 years old we were advised that having someone with such significant behavioral concerns remain living with her family would be a difficult thing.  We were basically told that we would never have a “normal life.”  As time progressed we were reminded at least one time per year that a residential option would probably be best for “the family.”  We always declined.  Devon is 30 years old now and still lives at home.  It is never easy, but this was and is our choice and we take it one day at a time.

In my position at CAR, I often hear of families who take vacations with their children, of opportunities available to them because their kids can fly, stay in hotels, stay with relatives while the parents go away, stay with caregivers while the parents go out at night etc.  I am always happy for them, but I know with certainty that there are others like me….people who have never gone on vacation with their families, people who except for one time per year [thank you CAR hayride] who are not out after dark…people whose children must sleep in their own beds every night with the night routine down to a science where nothing can ever change.  Every family has different challenges, but sometimes I think we have to acknowledge that there are many people and families who are restricted from even the opportunity to “relax” or have a day away.

Please note again, that I am not complaining.  It has always been our decision, and I cannot envision a life without the day to day interaction with my daughter, but once in a while the things I miss out on become a little bit overwhelming.  Some of the things you miss are wonderful family events, some are difficult family events.

For example, I was only able to attend 1 ½ hours of the 4 hour wake we had for my Mother.  I had to get home to meet my daughter.  I did not have an opportunity to attend my Father’s wake.  The weather was a factor in this, as well as my daughter’s serious upper respitory infection.  I did make it to the funerals.

I missed my older daughter’s graduation from Medical School and Match Day because she was in Chicago.  I did not have a chance to attend the rehearsal dinner for her wedding even though it was in Providence, because we felt it was more important that I be at the wedding.  It was a beautiful wedding and I was so happy to be there for the entire event.  Devon had a great time too.  My older daughter was not alone for any of these events.  My husband and my father were always there for her, but it was still hard for me.

Over the summer I became a Grandmother to the most beautiful Nora.  She was born in Texas and in August moved to Kentucky with her parents [my daughter and son-in-law.]  Their careers as a Developmental Pediatrician and EP Pediatric Cardiologist have dictated where they live.  Because we cannot travel and they had to move across the country I have never met my Granddaughter.  I can Face Time and Skype and I have many pictures and videos, but it is not the same thing.  I want to hold that beautiful baby in my arms.  I know it will happen someday, it is just hard to wait.   Some days the restrictions I have on my life are harder to accept than on other days.   This major event was just another reminder of some of the things we have missed.   I know I am not alone in this and I believe it is important to acknowledge some of the more difficult and maybe unexpected issues some of us face at certain points in our lives.



The Essence of a Person

A person may have Autism, but Autism does not define them. Too often all the traits that a person has, every behavior they exhibit is attributed to the person having Autism. It is like the person loses his/her personhood and becomes an “Autism”..We each have many traits but they never define us.

This is one of the messages that Eve E. Megargel communicates in her book entitled “Learning To Kiss”. In the book she shares the life story of Billy, her son with Autism, and the impact of complicated and difficult to determine medical issues he has, the manifestations of which were too long attributed to his having Autism.  Woven into the story is the growth of Billy’s abilities to be a communicator, from learning to form the physical act of a kiss as a way to develop connection, to becoming a competent communicator with a speech output device. Billy’s ability to develop his communication skills was dismissed as something he was not capable of. Fortunately, his family did not agree with that thinking, as his ability to communicate became crucial as they worked with his serious health issues.

My husband and I heard Eve speak at a presentation of the details of the family journey written about in the book.  As our son had gone through several years of pain issues due to health issues and difficulties in communicating effectively about them, we related all too well to the Magargel family’s experiences. It was an emotional rollercoaster seeing a son in pain and struggling to understand what was wrong. There is a profound grief in knowing that your loved one is not well and in pain and struggling to find answers from doctors. Thankfully, we found some doctors who were willing see our son’s behavior as communication of pain and struggled with us to find the physical issues causing the pain. Others with Autism are not so fortunate.

Early on, when an educator’s stated goal for Billy’s education was to learn to comply, Eve advocated for Billy’s right to have his education address his need to learn to communicate in more effective ways, and to be appreciated as a person rather than being defined by his Autism. She persevered in her quest to make sure that her son was not underestimated because he could not talk and struggled in a world that was often confusing and at times overwhelming.

People with Autism just like all of us, need to have opportunities to develop their skills and talent. We all want to have people take the time to understand our communication and be responsive to our feelings and needs.  We all thrive through meaningful relationships with people who value us. It takes letting go of our fixed concepts and ideas of who a person with Autism is, and what they need and being open to learn what is meaningful to them. Communication is so much more than spoken words. How we regard a person with Autism is communicated to them not solely by our words, but by how we relate to them. Eve writes about individuals in her son’s life who took the time to really see and know her son. Billy blossomed in relationship with them. Throughout my son’s life I have seen how my son has blossomed in relationship to people who are able to reach out to him in ways to which he can respond and who value him. The dance of these relationships is a joy to behold. These people will tell you they get as much as they give. Each is enriched by the relationship.

May we all have people in our lives that are there through the good, the bad, and the ugly. People who see us as we are, not as who they think we are or want us to be.

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 for news and musings.


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!


“Kid’s with Autism don’t make friends or have meaningful relationships with family & friends. Trust me!”

Does the title of this blog infuriate you and/or make you upset? I’m going to guess, yes.

Several years ago, when my son Jayden was about 3 years old, a woman approached me while I was working. I was wearing some sort of Autism Awareness t-shirt, as I often do. She very nicely asked me if I knew someone with Autism. I told her that my son had ASD and so did my cousin. We spoke for a few minutes after that.

She mentioned to me that she was a retired Special Education teacher and taught a number of children over the years with ASD, but there were far less diagnosed throughout her years of teaching then there were now. We spoke about school services and a parent/guardian/caregivers role in advocating for children like Jayden. She asked me how old my son was. She told me that I seemed to have a lot of knowledge early in my sons diagnosis regarding services and advocacy. I thanked her.

Here is where the conversation took an unexpected turn..she said this, and I quote, “You’re a young mom. Your road will be long and exhausting. There are places you can put your son and be able to visit with him as often or as little as you’d like. Kids with Autism don’t make friends or have meaningful relationships with family and friends. Trust me! I taught these kids for years. It’ll be much easier for you to live your life at your age. You should really consider it!”

After I processed everything this woman had just said to me, I was FURIOUS! I was hurt! I was upset! How dare this woman, that I don’t even know, say such untrue and hurtful things to me? I said quite a few not so nice things to her in return for her “advice.” The conversation ended immediately following my response.

Do I know what my options are as a parent to a child with a disability? Yes, I am very aware! Everyone’s circumstances are different and unique. Each family has to choose what is right for their child and their family.

To me, she was suggesting that I throw in the towel on my newly diagnosed son and look into residential options for him because it would make things easier. Make things easier for who? I hadn’t even had a chance to live in this new world with my beautiful boy! At some point in time, Jayden will be older, and so will I! I may not be able to provide the level of care he needs anymore and I may have to look for other living arrangements for him. When that time comes, I will cross that bridge and make the best choice for him.

The thing that upset me most, besides her complete ignorance, was that this was a person who once taught children like my son. For her to strongly imply, “Kids with Autism don’t make friends or have meaningful relationships with family and friends. Trust me!”, made me so angry!

Jayden enjoys his time alone, doing his own thing but let’s face it, so do you and I! He may not play with toys the same way his cousins and friends do…he plays with them his way. He may not sit down to play a game without guidance but one thing is for sure, this boy LOVES with his whole heart!

The relationships he has with his family and friends are pure! He loves to be around them! He hugs them, kisses them and plays with them, his way! He has formed and maintained many relationships over the years with the people who put themselves in his life, seamlessly. These relationships are not forced. I can only speak on Jayden’s behalf, but I know this holds true with many of you reading this.

Our journey is far from over. Our road has been long and hard. The best days of my life have been spent with my sweet boy and I would not give up a single day of seeing his beautiful smile.

Jayden is a non-verbal child but the smiles and love in these pictures of him with his family & friends, need no words!

The Gottschall Access Program – A College Experience for Adults with ASD

“There are two primary choices in life: to accept conditions as they exist, or accept the responsibility for changing them.” Denis Waitley

We have thought, and said, and advocated for a long time that the adult services available for individuals with ASD do not match their needs and strengths. However, saying this has not changed the landscape for our individuals.  We are starting a new program that we hope will support some of the individuals who could benefit from a different structure than what is currently available.

The Gottschall Access Program is the culmination of work between The Gottschall Foundation and Community Autism Resources.  For the past 4 years, the Gottschall Foundation has hosted a summer college program for adults with ASD. Each year that program has grown and transformed into a more comprehensive and diverse program.  With each adaptation that was made to the program, the students rose to the challenges and requested even more. They wanted not only a summer program, but a full year program, a college program, a certificate of achievement.  We listened…and we believed.

In September of 2016, we will launch the Gottschall Access Program (GAP). The Gottschall Access Program offers adults on the autism spectrum a unique opportunity to enhance their lives, vocational and social skills. This will further enable them to participate in internships, and then eventually the pursuit of gainful employment. This will take place on the Fall River, MA college campus of Bristol Community College. Here, students will enroll in a 3-year program of specially designed courses and have full student access on the college campus.

The program will offer 3 main branches of concentration for career and internship development:

Paralegal Support
Purpose: to teach highly marketable job skills; allow students to utilize organizational and consistency skills; and to provide the students with a foundation for internships within the Massachusetts Court System

Purpose: To improve communication skills; social skills; and confidence

Organic Farming

Purpose: to provide nutritional education; work skills; physical activity

Students will be placed in an internship in their desired field, and receive a Certificate of Completion from Bristol Community College upon fulfilling all program requirements. All courses focus on developing self-determination skills, critical thinking and soft skills. Students construct a career pathway throughout their program that is specific to their learning styles, strengths and interests.

In addition to these courses, students will also complete Enrichment and Health courses every semester.  These courses will aim to broaden interests and discover new skills while also promoting a healthy lifestyle that includes diet, movement, safety and stress management.

By designing and offering this program, we hope to broaden the options that are available to people with ASD while also showcasing the skills and abilities of this community as employable and valuable members of society.  We have been talking for too long…it’s time for some action.  We hope this program will be as successful as we know it can be and that everyone will continue to look at creative and innovative ways to support and nurture our very unique population of adults with ASD so that we can create reciprocal relationships utilizing everyone’s strengths and needs.

For more information about the Gottschall Access Program, please visit the website at Gottschall Access Program


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.

What Autism Awareness Month Means to Me

                I was at one of my favorite local stores in the checkout line, when the sales associate asked if I wanted to donate money towards Autism. When I asked what organization the money would be donated to, the sales associate seemed confused by my question. The manager was then asked the same question by the sales associate who had to then call corporate to find out who it was. While I patiently waited for an answer, the woman in the next checkout area asked me a question regarding my insistence on knowing what Autism organization the donation was going to. She asked me why I asked where the money was going to since it would help someone with Autism, wouldn’t it? I responded by saying that I preferred to find out what organization it was and if it was a national organization vs. local. She seemed confused by my response again asking, weren’t all Autism charities the same? Didn’t they all help people with Autism? I tried to politely disagree. At this point, the manager came back and told me the name of the organization. I declined to make a donation after finding out the info because I did not wish to donate funds to a national organization who really has not helped my family directly. I explained to the other customer, sales associate and store manager that I was a parent of twins with Autism and did not support this organization’s policy or their way of supporting families with a person with Autism. The store manager and other customer seemed a little taken aback by my response and stated that they never would have thought to question where the funds would go to. They figured it would just help someone with Autism. The sales associate told me that she had a family member with Autism and never thought also to ask: assuming that the money would help someone like a family member. I responded that it may not be the case and they thanked me for the info. To be honest, they may have thought I was a bit nuts to do this over a small monetary donation, but I felt that it was important to also bring awareness to asking where the money was going when making donations. As my sons have gotten older, I realize the importance of this more and more. For myself, it is not just about the awareness piece. I remember when my sons were younger, I purchased quite a bit of items that had puzzle pieces or the Autism awareness ribbon in hopes of spreading Autism awareness. I feel it is even more important for people to not only understand Autism, but also have more of a tolerance for people with differences in general. Our kids tend to stand out more so because of their challenges whether it be their stimming behavior, sensory and social issues as well as communication challenges. Some parents choose to address stares and awkward situations with passing out cards explaining how Autism affects their child.  We have all been in some interesting situations with our kids while in public. I remember when I took my sons to the movies, one of them was a bit scared by the loudness in the theater as well as the darkness. He refused to sit down in the seat. Funny enough he did want to watch the movie, but would only do so standing by the door while he held the door open. After many failed attempts at trying to get him to sit. I stood with him by the door while my other son sat with his helper. Halfway thru the movie, the movie cinema staff person came in to check out the theater as they typically do. When the staff person saw that my son was standing near the door and wanted the door open, he gave me a confused look. I quickly and quietly explained to him that he had Autism and while my son had successfully sat through previous movies, he for some reason could not do so now. The staff person just nodded. I thought to myself, OK, I guess he gets it. He left. In 10 minutes or so he came back with a folding chair for my son to sit down on which to my surprise my son immediately sat down. I was able to inch him closer to the seat section where he watched the remainder of the movie without issue. After the movie was over, I found the movie theater staff person and thanked him again. I asked if he knew someone with Autism and nonchalantly he responded he had a neighbor who had a child with special needs and he wasn’t sure if he had Autism. The staff person said that he got the chair because he couldn’t believe my son would stand for that long. I, of course, was very appreciative of his kindness and assistance in helping my son. This person not only chose to look past what may have appeared to be “odd” behavior, but actually helped the situation. Officially April is Autism Awareness month, but I hope we all can help others better understand not only our children, but that we all have differences that make us who we are. I recently saw something that represented this…