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.


Thank You

Patricia Leonard-Toomey
As we head directly into the holiday season, many people begin to express their thanks for their families, the delicious food on the table, etc. While those things are important, I am reaching back to March to begin my thanks.
My daughter and I were in Olive Garden for lunch. She loves to go to Olive Garden because she enjoys the Gnocchi Soup. We do not go there often because I cannot always predict the type of experience we will have. Sometimes we get right in, order our food, enjoy the meal and successfully leave the restaurant. Those are the good times. Sometimes we have to wait to be seated, we sit near too many people, the waitress takes a long time to get to the table or the food takes a long time to arrive. Those are not the good times.
When we went to the Olive Garden in March, the restaurant was not too crowded. We were seated in a small section where a couple of the tables were already occupied. We did have to wait a bit for the waitress and the food did take a while to come out, but my daughter was holding things together. I had to constantly reassure her that everything would be ok, and she was getting anxious and a bit loud. At the table directly across from us were two women conversing in another language. One was elderly and I believe the other was her daughter. As my daughter’s voice got louder they kept looking over at us. I did notice that they were smiling so I was not too concerned. When my daughter began to ask for the mints that Olive Garden provides at the end of the meal, I was ready. I had three Andes Candy Mints ready in my coat pocket! Those were ok, but not quite what she was looking for. The younger of the two women came over with her Olive Garden mints and asked me if it was all right if she gave them to my daughter. She told me that watching us made her so happy because in the country she was from she used to work with people and she missed having those experiences. My daughter of course said Thank You and then asked her name. Her name was Betty. My daughter was happy but I was grateful. We do not always get smiling and kind looks from people when we are out and her kindness made the rest of our day.
A week later, my daughter was at Chuck E Cheese celebrating her 31st birthday. Yes, I realize some people will question the “age appropriateness” of this outing, but Chuck E Cheese is her favorite place on earth, and we always have a small birthday party for her at this particular location. We had our cake, sang our songs and my husband and I left her with someone who has worked with her for 15 years to enjoy the rest of the pizza. When she came home she had a Chuck E Cheese doll with her. I assumed she purchased it, but was told the man in the booth behind ours had bought it for her after we left and wished her a happy birthday. His name was Jesse.
My daughter has probably forgotten Betty and Jesse. They have probably forgotten her. I will never forget them and think often of the kindness they displayed to my daughter and what it meant to me. So, thank you to all of the people like Betty and Jesse, and Happy Thanksgiving

A day in the life…Part 1

As a parent and professional in this field, I am often asked about our journey thus far, Jayden’s regression leading to his diagnosis of ASD and our thoughts on therapy options, school programs and placements, diet changes & biomedical treatment, amongst many other topics.

In writing my next few blogs, I would like to share our journey with you. I know for many, there will be similarities & opinions that may arise regarding some of the topics I write about. The truth is, we do not choose this life, it chooses us. Sometimes it is amazing. Sometimes it is scary. Sometimes you feel on top of the world. Sometimes you feel like you don’t know what to do next. It is important to know that there is no right or wrong way on this voyage. Each of you should choose what fits best for your family and child. Just because you are parenting one way or choosing certain therapy options over others, does not make the next person wrong for not doing the same.

My hope with this series of blogs is that those families just starting out can see that although their journey may be different, they aren’t alone, even though I fully understand how hard it is to feel like anyone else in the world is going through what you’re going through. I was one of those parents. I remember what I felt like…alone, scared, angry, sad…Alone because I felt like no one understood what was happening and what we were going through. Scared because I had no idea where to begin in getting the help Jayden would need, possibly for the rest of his life and ours. Angry because I couldn’t understand how something like this could happen when I had a healthy pregnancy and I never did anything that I wasn’t supposed to do and Jayden had developed typically and out of nowhere, we were robbed of that. Sad for the hopes and dreams I had on what my life would be like when I became a Mother and all of the hopes and dreams I had for my child.

Bear with me, as I begin Part 1 of a series of blogs about a day in the life with my sweet, handsome boy…

Jayden is a handsome, happy, fun and loving 11 year old boy. He loves music, swimming, surfing, being read to, riding horses, his iPad, being outdoors and spending time with his family and friends. He developed typically and met all of his developmental milestones up to the ages of 15-18 months old. Jayden began sleeping through the night at 5 weeks old and was such an amazing baby! Jayden had language; Mama, Dadda, Baba, No, Go etc. He was able to imitate finger plays to songs like patty cake, twinkle, twinkle little star and play peek-a-boo. He played with his toys appropriately. He waved good bye, blew kisses, clapped and shook his head yes and no. He fed himself finger foods and could eat with a spoon. He had an enormous appetite and would eat just about anything! When Jayden’s name was called, he’d come and see what you wanted. He was a very happy baby. He smiled all the time. He was connected to the world.

Between the ages of 15-18 months, Jayden’s father and I began to notice that Jayden was losing some of his skills. In this time, he lost all of his words. He no longer imitated, waved good bye, blew kisses, clapped or shook his head yes and no. He wouldn’t respond to his name and he lost all eye contact. He now preferred to spin toys close to his eyes and stare into toys that lit up, rather than playing with them functionally. He started to become a picky eater. Jayden started to flap his hands and walk on his toes. He also started to get chronic ear infections and colds. Jayden became very disconnected from the world around him. He seemed sad or sick more than he seemed happy.

After Regression

I scheduled an appointment with Jayden’s Pediatrician immediately, as we knew something was very wrong. Initially, based off of parent report, Jayden scored very low on the M-Chat Questionnaire (Modified Checklist for Autism in Toddlers). From this point, Jayden’s Pediatrician referred us to see a Developmental Pediatrician. The waiting list was 12 months to get an evaluation!  We were beside ourselves…What could we possibly do for an entire year without any insight to what was happening to our boy?

We had to miss many family gatherings or had to leave after a short period of time because Jayden would cry and be so upset. We couldn’t take him to the store, zoo’s, parks, or anywhere else for that matter. He didn’t mind visiting family at their homes, as these places were comfortable and predictable for him. This was so upsetting to his father and I, as our families are extremely tight knit and get together often, especially during the summer months and holidays. Although it would have been easier for all of us to just stay home, we still took Jayden to expose him to different environments, even if we had to leave within the first 10 minutes, hoping that in the long run, this would help Jayden feel less upset and anxious about going places.

In the meantime, I contacted our local Early Intervention Agency to have Jayden evaluated to qualify for home services until we could get him in to see the Developmental Pediatrician. Jayden’s Pediatrician also wrote a letter suggesting, in his opinion, Jayden was at high risk for Autism Spectrum Disorders and should begin ABA (Applied Behavior Analysis) therapy, in conjunction with his Early Intervention services, as soon as possible. Luckily, the ABA agency we chose to work with Jayden, accepted the letter from Jayden’s Pediatrician. Typically, you must have an Autism diagnosis to receive ABA services. There weren’t as many options for ABA therapy during that time as there are now and the criteria to receive services was pretty strict with the agencies as well as getting insurance approval. Because of the letter, Jayden was able to begin ABA therapy 6 months sooner than he would have, with the help of his Pediatrician.

While waiting for Jayden’s appointment to see the Developmental Pediatrician, I contacted the office and asked if we could be placed on a cancellation list, in hopes that Jayden’s appointment would come up sooner than the 12 month wait we were initially given. At this point, Jayden had been receiving Speech, Occupational, Physical, Aquatic, ABA & Hippo therapies in and outside of our home. The next step from here, while waiting to see the Developmental Pediatrician, was to have Jayden’s hearing tested to be sure that hearing loss was not a contributing factor to what was going on with him.

Jayden’s first hearing evaluation was a disaster. He was scared and anxious and did not participate. A second appointment was scheduled to try again. Once his second appointment rolled around, Jayden again, did not participate. After these appointments, the Audiologist determined that Jayden suffered from significant hearing loss. She suggested that Jayden was deaf. I immediately called Jayden’s Pediatrician and requested a referral for a second opinion. Neither Matt nor I,  felt that Jayden’s hearing anything to do with what was going on.

After doing some research, I requested that Jayden have a sedated ABR (Auditory Brainstem Response) done, which is a hearing test done while sedated. The process works by attaching electrodes to the scalp and placing ear buds in the ears. The sound waves sent through the ear buds, at different amplitudes, are then picked up by the brain and determine whether or not the brain is responding to what it is hearing. At the end of the testing, the Audiologist came out and said, “You’re boy does NOT have any hearing loss! In fact, he had fluid in his ears (due to him just getting over an ear infection) and his brain was able to pick up the lowest sounds sent through the ear buds!” We were so happy to have pushed for the second opinion and get this news! The results were sent over to Jayden’s Pediatrician. We continued with all of Jayden’s therapy while we waited for the appointment with the Developmental Pediatrician.

To address Jayden’s toe walking, he was referred to see an Orthopedist. Although the Orthopedist was certain that Jayden’s toe walking was related to sensory issues, he suggested a trial of AFO braces to insert in shoes to help keep his feet flat and keep him off of his toes. We put AFO’s on Jayden for 6 months, everyday. Jayden refused to walk with them in his shoes and would crawl or drag himself around the house. He eventually began getting very upset every time he saw a pair of shoes and resisted wearing shoes. This clearly became very difficult as Jayden was now 2 years old and needed to wear shoes to walk outside. After 6 months, we revisited Ortho and explained what a struggle the AFO’s had been. The next step from here was to have Jayden serial casted, which would be a noninvasive procedure that could help correct Jayden’s toe walking.

Jayden was fitted for casts on both legs, from the knee down. He had to wear these for 4 weeks. 4 weeks had come and gone and I took Jayden to have his casts removed. He walked around at the Ortho’s office for a bit and was not going up on his toes. We left with a follow up appointment for 6 months out and were told to call with any issues before then.

Upon arriving home, within 20 minutes, Jayden had made his way back up on his toes. He was shaky and his ankles seemed a weak but, he was on his toes. I immediately called his Ortho and explained what had happened. He gave me 2 options…Jayden could be brought back in and re-casted right away or we could wait it out and continue with his stretching so at least his heel cords wouldn’t get any tighter. Because the Ortho believed it was due to sensory issues, it wouldn’t make sense at that time, to try Botox injections or a heel cord lengthening surgery with Jayden but, he did tell me that these would be things to keep in mind for the future, if he continued to be tight or worse, if his heel cords locked up. This was a difficult decision for Matt & I to make so we waited and put Jayden on waiting lists for Physical Therapy and Aquatic Physical Therapy, once his Early Intervention services would come to an end. We also had a stretching routine that they did with him every day.

To be continued…

From A Parent’s Perspective

To those who provide support to adults with Autism, I know that parents can be perceived as being over-protective and hard to please. I can understand, at times, that from their perspective, we may be perceived as such. I want to share with you my experience in parenting my son, who I love very much. My hope is that it will be helpful to all adult service agencies and support staff working with individuals with Autism, in understanding a parental perspective.

Let me start out by saying that I feel that most support staff see my son as a likeable guy. I also think that most support staff have his best interests at heart. They have enjoyed him, and want him to be safe and healthy. They have been well trained in safety techniques, and for that I am deeply grateful. I also understand that the developmental disability system does not pay support staff commensurate with their responsibilities, and that staff shortages make their job harder and more stressful. I do not leave the need for higher salaries unmentioned when I advocate for better services. In fact, the need for professional pay is at the top of my list as I address my senator and representative.

I have always tried to voice my appreciation to support staff for the work they have done or presently do to support my son. I hope they know that I am sincere. I also know that I am far from perfect. I can express myself at times in an impatient manner. At times they have done the same. There are times I am more stressed out than others. We are all human. If at any time I have offended any staff, I apologize. That was never my intent. I also want to say, from my perspective, that I feel most of the time, staff and I have interacted with each other is in a friendly manner, often with some humor mixed in.

Parenting my son, has brought so many positive things to my life…learning to communicate with and understand mostly  non-verbal communication, patience, ability to put myself in someone else’s shoes, the gift of appreciating not only what a person does but also importantly, what a person brings to one’s life just by being who they are- their gifts.. I do not diminish any of this when I say that parenting him has also been stressful. He struggles to communicate; he is very sensitive to how he physically feels. What may be a minor discomfort to us is very anxiety-provoking for him. A  more minor discomfort may remind him of a time when that minor discomfort, whether it be in his ears, teeth, sinuses, head, stomach etc., felt much worse. That causes anxiety that in itself can be very uncomfortable and desregulating. Before I developed a visual chart that could be used by him to point to how he feels, he would always respond verbally “O.K” when asked how he was feeling. Many times it was clear he was not “O.K.”. Even when the visual chart was developed, there was a lot of tweaking of how to use it most effectively with him. We have gone through some rough times in trying to figure out what was bothering him.

My life has revolved around trying to understand his needs, learning how he communicates (which is mostly nonverbal, even though he can talk for some purposes, like requesting candy).  As I described, he is not able to just come out and tell you if something is bothering him, he cannot talk about his feelings, nor does he easily share information about his day, he is not able to initiate a topic of conversation or to keep a conversation going.

My son has always needed a lot of support. He needs someone with him at all times. It was never easy to be in social situations as he often struggled with busy settings, and supporting him in being there was the priority. We did not have many vacations without him and vacations with him, by necessity had to be planned around his needs. His needs for intensive support did not go away when on vacation. Indeed, going on a vacation was not an option the last number of years he lived with us. So when it has appeared that I am “overly involved” and “overly protective”, please realize how deeply involved in his life and development I have always been. It is an unrealistic expectation for me to back off and” let go”. I feel it is important to share what I know with those who support him. I want my son and his needs to be understood and for their work to be made easier by the knowledge I share.

Now that he is not living with us, figuring out ways to be connected are evolving. For example, since a familiar and everyday routine is what he is comfortable with, I have had to adjust to him not really being comfortable at our house for the holidays. Where he lives now is home to him and his routines there are what bring him comfort. So we visit with him there on the holidays.  After all, being together is the important thing. I am letting go of things I feel are appropriate, but know that acceptance of him not coming home for the holidays has not come without some sadness.

What was helpful to me and support staff was to meet directly and talk about what I was feeling and what they were feeling. I have tried my best to see things from their perspective. But it was helpful to more clearly understand all the requirements of their job. I was able to clarify and review my son’s needs, specifically around communication and dietary restrictions. The discussion allowed for us to learn from and to feel more comfortable with each other. Misunderstandings were cleared up.

My hope is that by sharing my experience, agency management and support staff will better understand the parental perspective and that other parents will feel supported in their ongoing advocacy for their son or daughter. I think it works best when we try to “walk in someone else’s shoes” and if we don’t understand, to ask.


Standing on the Shoulders of Those Who Came Before Us

This blog was written by Barbara Domingue, M.Ed., ATP — Executive Director of Community Autism Resources

With my son turning 34 years old this November, I’m at an age where I think back on the many moments that took us to this point in our lives. From the very beginning, there have been people in our lives, those who experienced autism long before my experience, who generously shared their experiences, their wisdom, their journey.

2 of my first phone calls would not be considered warm and fuzzy conversations. They were with women who knew that I was struggling, not only to understand my son, but also with trying to make sure that, at his young age, he was getting the best possible services. The first woman I spoke to was Barbara Cutler, Ed.D. She wrote the book “Unraveling the Special Education Maze.” I called her in a panic and she calmly asked me if I had read her book. I confessed that I had not. She suggested I read it, make notes and call her with my questions. While I was surprised by this, I later realized that she was helping me to get focused and teaching me the beginning steps of effective advocacy. She has been a life-long mentor to me. No nonsense, clear thinking, and a passionate advocate. She taught me how to advocate effectively for my son. Barbara has never been judgmental or critical of my efforts. She has always been a source of strength and comfort. Standing on her shoulders, I knew that helping each other was a necessary path in our journey. She invited me to join the Northeast Regional Conference on Autism and later, to be part of the Autism National Committee (AUTCOM). This group is dedicated to “Social Justice for All Citizens with Autism” through a shared vision and a commitment to positive approaches. I met wonderful people in this group. These early advocacy endeavors helped me to feel connected to others and provided me with wonderful information to assist my son. It also taught me how powerful we can be when we work together!

I also spoke with Norma Grassey. Norma was living in Cohasset and was the I&R person for the MA Chapter of the Autism Society.  This was long before there were autism support centers. Norma began by asking me how old my son was, I tearfully told her he was not quite 3. She told me that her son was 8 years old & that I would make it. What she actually said was, “You’ll live.” She went on to explain that this was the first stage – getting to understand him and how autism affects him; getting to know the system and what I needed to do to prepare myself.

I joined the MA Chapter of the Autism Society and had the privilege of working with Norma through that group. Standing on her shoulders enabled me to see how I could assist other parents on their journey.

The last person I wanted to mention, whose shoulders I’ve been fortunate to stand upon, is Dr. Barry Prizant. My husband Bob & I were really at loss in knowing what our next steps should be when Nick was diagnosed. I felt we were being pulled in many directions. But in our gut, we knew that we wanted him to be treated with respect and kindness. We wanted to work with individuals who acknowledged the many facets of autism seen in Nick. We knew he was so much more than the behavior we were seeing and wanted people know this as well. A dear friend introduced me to the work of Dr. Barry Prizant. Immediately my husband & I knew that he was a kindred spirit. I confess we took to stalking him – in the nicest of ways. We would find out where he was presenting and make sure we were there. Through these workshops, we began to understand Nick in a deeper way. We started to figure out the “why” when he reacted to things. Nick was enrolled in a program where Barry was the Director of the Communication Program. All these many years later, long after Nick left that program and moved on, Barry continues to teach us the importance of sharing what we know; looking at and treasuring our son for the “uniquely human” being that he is.

Nick is now an adult and I continue to learn from those who came before me and hope that, in some small way, I can repay the kindness of those who helped us and continue to help us along the way.

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.”

Are we all in this together? Or is it every man (person) for himself?”

The way you answer this question may well determine, your
philosophy on life and whether you see the best or the worst in others.  There is no shortage of problems in today’s world but finding solutions or even paths that might lead to solutions is much more difficult. Some people only look for scapegoats or someone to blame instead of coming up with creative solutions to the problems.

What if you view the world in a different way? What if there is no them? What if there is only us? Does that cause you to think differently, to act differently? Instead of just saying, “I’ll take care of my family and the rest of you are on your own” suppose you
redefine “family” to include everyone? Where does that lead us?

When I studied philosophy, my favorite philosopher was John Stuart Mill who was famous for saying that a person’s actions should be governed by doing what promotes the greatest good for the greatest number of people.


In my work with individuals with disabilities I have seen how the us versus them outlook impacts their lives. I have seen many people staring, looking the other way in discomfort and judging them. If the world could just accept people for who they are and make them feel welcome, it would be a better place.


Recently I was at the park with a child with Autism who is nine years old. He was in a pram. He does not need the pram for mobility but to feel comfortable and safe in a crowded, busy setting. People were staring wondering why a big boy was in a carriage.  They first assumed he was not able to walk. When we arrived at the park, a more open and comfortable setting, he got out of the pram and began to run around. They began to whisper to each other. They did not know how to include someone who they saw as different from them. A smile goes a long way in making someone feel welcome. Rather than making him feel alone, just a smile would let him know he is valued and included. A smile can make someone’s day. How does it make you feel when people smile at you? 🙂