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.

 

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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? 🙂

World Autism Awareness Day at The United Nations

World Autism Awareness Day

March 31, 201704-02-wautismday

United Nations

“All human beings are born free and equal in dignity and rights.”  – Article 1 Universal Declaration of Human Rights

This year, I was honored to attend World Autism Awareness Day at the United Nations in New York City.  The theme for the day was “Toward Autonomy and Self-Determination”. The topics ranged from Supported VS. Substitute Decision-Making, The Road to Independent Living, Navigating Relationships, Vocational Training and Employment and The Way Forward: 2030 Agenda and the Commitment to Leave No One Behind. Each panel included speakers from around the world including Ethiopia, Nigeria, Argentina and Poland.  It was fascinating, inspiring and heartbreaking all at the same time to hear about progress and challenges facing individuals with Autism around the world.

The person who resonated the most with me that day was the keynote speaker, Professor Simon Baron-Cohen, Director of the Autism Research Centre, University of Cambridge, U.K. Professor Baron-Cohen spoke specifically about Human Rights and where individuals with Autism stand regarding the Universal Declaration of Human Rights which sets out the basic rights and fundamental freedoms that are inherent to all human beings.  There are 30 Articles within the Universal Declaration of Human Rights and Professor Baron-Cohen chose 6 to focus on and examine in terms of people with Autism. Here is what he had to share…

Article 1.

All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.

Many individuals with Autism are victims of abuse, neglect, manipulation or coercion. Often, these crimes are committed by someone close to, or trusted by the person with Autism.  Due to the social naivety, many individuals with Autism will take what any person says at face value which can result in crime against that person.  Many individuals will stay at home for fear of some type of abuse.

Article 26.

Everyone has the right to education.

Up to 20% of students with Autism are excluded from school for one reason or another.  In addition, many of students who do attend school are bullied which can lead to feelings of rejection, fear and insecurity. This can lead to students dropping out of school or underperforming on exams or work despite capability and intelligence.

Article 21.

Everyone has the right to equal access to public service in his country.

1 in 3 individuals with Autism experiences mental health challenges due to lack of support.  This lack of support in some cases can lead to depression, feelings of exclusion and even suicide.  Many individuals struggle undiagnosed and therefore unsupported.  Most countries do not screen for Autism in the preschool years or even through childhood.  People living in low-income areas may live with no diagnosis for a number of reasons and even those who do get a diagnosis may not receive any follow-up support.  Waiting time for a diagnosis can be up to a year in many areas.  This wait time would be unacceptable for other diagnoses.

Article 23.

Everyone has the right to work.

Only 15% of adults with Autism are in full time employment, despite many having good intelligence and talents.  Employment leads to a feeling of value within your community. Unemployment is another risk factor for depression.  For many, employment discrimination begins at the interview stage where the expectations for eye contact and communication are the very indications of an Autism diagnosis.

Article 24.

Everyone has the right to rest and leisure.

There are many situations where people with Autism have been asked to leave a public area like a store or a movie due to their behavior. This would not be tolerated with other diagnoses. ½ of adults with Autism report they feel lonely, 1/3 rarely leave their house and 2/3 report feeling depressed.  1 in 4 adults report that they have no friends.

Article 7.

All are equal before the law and are entitled without any discrimination to equal protection of the law.

1 in 5 people with Autism are stopped and questioned by police officers due to unexpected or non-traditional behavior. 5% of those people are arrested.  2/3 of police officers report that they have had no training in interviewing individuals with Autism.

Baron-Cohen states, “It is clear that just by examining these 6 articles, people with Autism are still falling outside our human rights and therefore face huge barriers towards autonomy and self-determination. “

While Autism awareness is very important, I think this examination of human rights proves that we need to do more. We need to have a call to Autism action. We need to be more accepting, more understanding, more than aware. All people have the right to live their lives to the best of their abilities, however, we need access to our human rights in order to begin.  We all have a role to play. What can you do?

 

 

 

 

There’s Not Enough “Me”

Things have been rough around here the past few months.  In January, my mother received a terminal diagnosis and began experimental treatments. In February, I got married, and my little family of Heather and I grew by 3.  In March, after multiple hospital and rehab stays, my mother stopped the experimental treatments and came home to be cared for.  Shortly after that, Heather was informed that as of April 1 she would no longer have access to the 11 hours of adult support services she receives each week.  Yes… 11 hrs… per week…

I feel a little bit like I’ve been banging my head against a wall.  I’m busier than ever, but mostly with things that need to be done over and over again.

One of my priorities has been ensuring that Heather is cared for when I can not be here.  Whether I’m working, or home caring for mom, making sure that Heather has appropriate support and activities to enjoy is a priority.

I spend what seems like hours each weekend calling my people, looking at my work schedule and Mom’s Dr schedule, making sure that someone is responsible for Heather during all hours of the day.  When I get a day or two arranged, there is a brief moment of relief, followed by the knowledge that there are still 3 days left in the week to figure out.

The thing is: she doesn’t care.  Even if she could understand the weight of all that arranging, she would tell me not to bother, because she just wants me.  She just wants me to sit and sing her a song. She wants me to be home.  She wants me to give her a shower.  She wants me to help her change her clothes. She wants me to tuck her in. She wants me to be there before she leaves the house, and then again when she returns. All my hard work is thrown back in my face when she aggresses towards me as I try to walk out the door, simply because she wants me to stay. She has a day filled with fun activities ahead of her, but she just wants me.

The problem is that sometimes after all the figuring-out, there’s not much “me” left.  The thought of sitting and singing the same song that we’ve been hearing on repeat for the past 3 months is sometimes actually painful. Fighting with her to take a shower, when she willingly hops in the tub for my sister? Not worth it!  The weight of being everything to her is sometimes too much to bear. Sometimes, there’s not enough “me” to meet all the needs that need to be met.

I have no wisdom at this point, but I have hope. We’ve been through this before.  Life has been stressful, and we’ve gotten through it.  We have a fantastic support system, and every year or so, Heather finds new favorite songs.  I’m holding on to the hope that life settles quickly this time, and that our new song is right around the corner. For now, those moments when I catch her looking out the window when she wakes up to see whose car is in the driveway and whispering with a smile, “Brookie here”, help me dig deep and find a little more “me” to offer her.

How do you get through the times when there doesn’t seem to be enough “you” to go around?

“You’re just taking it the wrong way”

My friends come in many shapes, colors, sizes, and ages.  We all met at various stages in our lives.  Our careers range from Project Managers, Paralegals, Homemakers, Social Workers, Engineers, Dental Hygienists, Mechanics, Customer Service Reps., Educators, Musicians, and so so many more.  We enjoy hiking, boating, fishing, animals, football, hockey, BBQs, camping, bonfires.  Our absolute favorite thing to do together is to simply HAVE FUN!  And I’d say we do that quite well.

However, the one thing that can ruin a good time for me is to hear one of my amazing, beautiful, intelligent friends use the “R” word (side note, I do not even like typing that word, let alone repeat it). Hearing that word is like one of them giving me a solid gut punch.  For a while I would just take that punch and let it tear me up on the inside, but I wouldn’t say anything.  I don’t know if it was because I didn’t want to start that conversation and stir up a lot more than I was ready for, or if it was because I didn’t want to be labeled as the “fun sucker” or “Debbie Downer”.  Whatever my reasoning for staying quiet was, I’m glad I’m over it.

After a while it occurred to me that they aren’t going to know they are hurting me unless I tell them.  So, I began speaking up.  If one of my friends said the “R” word in conversation in front of me I would make a face and ask them if they could use a different word.  Depending on the day, the topic, and the friend, sometimes they would say a quick “sorry” and jump right back into conversation.  Sometimes they would have that nervous smile and say “oh yeah”.  Other times my friends would catch each other saying it and say “we aren’t supposed to use that word in front of Mary.”  But then there were times when it would stir off into a whole conversation about why I don’t like that word.  They would say things like “you know that’s not what I mean” or my favorite “you’re just taking it the wrong way”.

These conversations used to make me feel uncomfortable.  I don’t have anyone in my immediate family that has a disability so how was I going to find the words to explain why this word feels like a gut punch?  How was I going to drive this home?  Honestly, I’m still working it, but at least I’m trying.

The definition of the word in the dictionary is “less advanced in mental, physical, or social development than is usual for one’s age”.  I doubt that it was ever intended to be used the way that it is thrown around today.  I tell them that “if everyone used this word correctly, it never would have become slang in our conversations”, it would still be more of a medical term or a diagnosis.  I try to explain to them that unfortunately the “R” word is attached to an unpleasant stereotype.  However it happened, it has now replaced “stupid” or “dumb” and people use it far too often for the wrong reasons.  When they say “that’s not what I mean”, I ask them what exactly DO they mean?

According to the Oxford Dictionary there are 171,476 words in the English language surely they can find a replacement word, can’t they? Or when they say that I’m just taking it the wrong way.  Am I? Well…. No.  No I’m not.  I’m taking it the way that you are intending it which is demeaning and degrading to all of the amazing individuals that I have had the privilege of working with in my career.  The individuals that try so hard to overcome obstacles that life throws at them daily.  Individuals with hearts as big as they come.  Individuals that some days have difficulty finding any words never mind words to use to stick up for themselves.  So if I’m offended that you’re calling someone “Re****ed” for doing something wrong or saying something silly, then please PLEASE tell me what way I should be taking it?

I try to keep my cool.  I try to recognize those teachable moments and when I see them, I try to only stand on my soap box for a short time.  Knowing my friends the way I do, I can tell you that they all have truly good hearts.   I know that they didn’t mean to offend me.  My friends aren’t good people… they are the GREATEST people.  Each and every single one of them means the world to me.  I don’t ever want to seem like I’m trying to push them away or shut them up.  I just want them to know the power that THAT word holds.  Maybe some of my friends will stop saying it in front of me.  Maybe some of my friends will slip up and say it occasionally.  But maybe, hopefully, my friends will be able to erase that word from their vocabulary altogether.

“A tongue has no bones, but it’s strong enough to break a heart.”