Author Archives: Kim Souza

Why am I different?

 

On a recent trip to Foxwoods casino with Sam (not his real name) we encountered situations which caused Sam to question “why is he different?”

The trip was to attend bingo which he enjoys at his day program, we did not anticipate how he experienced sensory overload. He was unable to concentrate and focus due to many distractions such as the number of people, and the speed of the game. In his distress, Sam became fixated on the soda machine that was set behind us and repeatedly asked for soda. On one of his numerous trips to the soda machine, a gentleman who was sitting near us attempted to help him, upon his return Sam asked me, “Why did that man help me?” I responded by saying he was just being kind. Sam gave me this stare and said, “He could do it himself.”

I believe that he is at a stage where he is developing self-awareness, that he is different but lacks the theory of mind skills that help him understand what others may think and why they act as they do. He wants to fit in and be treated as a Neurotypical and not be “different”.

The question of “why” can’t be fully answered when the question is coming from the heartache of feeling different and alone.

I tried to explain to Sam that no one is truly perfect, we are all unique and special in our own way. You don’t need to fit in to feel good about yourself or to think you “belong”. You belong to yourself and that feeling is amazing. You never know what someone with a disability is capable of.

But, maybe by being different, Sam is here to help others to learn to be more tolerant, respectful, and kind. The man at the soda machine felt the desire to help someone in obvious distress and it made him feel good.

He then went on to say “How come I was treated differently at the doctor’s office”? He had a recent trip to the doctors, where the doctor was not including Sam in the conversation about his own body.

If the doctor had learned the same lesson about kindness, then maybe he would have included Sam in the conversation about his own body. He has intelligence, and as a human being deserves respect in an exam room. Sam sounds ready to self-advocate. He needs to be taught to speak up and say, “I am here, please speak to me doctor.”

Sam is different and he deserves the same respect afforded to anyone else. When he gets that respect then hopefully he will no longer feel different.

Am I bugging You?

 

I’ve recently been asking myself this question, how can someone who communicates so well have such a hard time being heard?

Every weekend for the last fifteen years I have worked with an amazing man. He communicates and is able to let those around him know his wants and needs, although he can be very repetitive with his requests. This is something I have understood is a part of his disability, and also a way for him to ensure he is heard and stay focused toward his goals.

Many folks who have met him comment to me that he seems quite stubborn, always asking questions. This at times may annoy those around him. They may see him as a pest, when I know he’s just self advocating. I realize that as his caregiver I’m required to be patient, but really I want others to understand where he is coming from. He doesn’t have the power or independence to just do what he wants, when he wants. When he asks for things, there are many obstacles he must get past that most folks take for granted that won’t be a problem in their own lives.

First he needs his wishes and choices to be heard, then agreed to and put into action by someone, usually a staff person or family member. He relies on others to drive him where he wants to go, to help him manage his money and spending, and to reach his goal within the time available- which is usually limited due to factors beyond his control. So when he asks “Am I bugging you? He then continuously repeats himself. I want people to have empathy and see the daily struggle and frustration he faces, and mostly overcomes to work toward the things he wants.

I don’t like to think he has to beg to be heard, and want any reasonable request he has to be agreed to, even if it isn’t always convenient. I am sure he will continue to advocate for himself and the reaction he receives from those around him will be challenging at times, but he has the same ultimate goals we all have: to live life, with liberty and freedom in his pursuit of happiness!

It’s Vacation Time | by Sherry Amaral-Lopez

In making plans for summer, I was thinking about how to include my 18 year old twins more in the planning process.  I use visuals to help them make a choice as to where they would like to go and what they would like to do. I went online with them and we looked at different options. They both enjoy the beach and pools so we focused on some possibilities around that. We looked at different locations on the Cape, and New England. I think it is important to use these types of visuals to not only help in developing a summer vacation plan, but it also helps them to understand what to expect on vacation.

Strangely enough this time they both picked the same place, the Cape.  In the past, they have chosen different places which can make it more challenging to plan. We typically will pick one place for the beginning of the summer for a few days and then do few days at my other son’s choice at the end of the summer. I find breaking up the vacation helps fill in school vacation time as well as giving my family two mini vacations instead of one.  Sometimes a week or even two is too long for our kids.

This year will be a first as the both picked the same place so the plan will be to go for a week. Because my sons are on a special diet I will look for a place that has at least a kitchenette. This makes it easier to keep their diet consistent as there typically won’t be a lot of menu options at restaurants. Usually depending on where we go, I will do research online to see what restaurants are nearby and what possible menu options I can find. I make meals and freeze ahead as much as possible so that I can also get a break from cooking while on vacation.

I typically will make reservations mid –week as you will get better deals and most places are less crowded. Another good option for a summer vacation is to go either at the beginning or the end of the summer. I have found it not only easier to find room options.

Since they have now picked where we will be going, I have showed them online the hotel where we will be staying. In the past, I have found it extremely helpful to actually show them the space where we will be staying, the actual rooms and the environment.  In my planning process, I have looked at area attractions to see what would be fun to do with my sons. I showed them online and they have chosen a few options…I then will plug these items into a calendar to help them understand the timeline of when we are going away. Each child is different on how best to use visual supports. For one of my sons, having this available to him before our trip, helps decrease his anxiety around the change in his routine. The opposite is true for his twin, if he sees the calendar too soon; he gets even more anxious about the upcoming change in his routine.

I also like to bring the comforts of home to help them feel more comfortable on vacation. I will bring favorite blankets, pillows; DVD’s to watch as well sensory items. I always look on the website, www.bedbugregistry.com to see what the rating is for the hotel before booking with them.  I find that planning ahead and using visuals to help my sons understand what we will be doing helps make for a more enjoyable vacation experience.

It’s Vacation Time

In making plans for summer, I was thinking about how to include my 18 year old twins more in the planning process.  I use visuals to help them make a choice as to where they would like to go and what they would like to do. I went online with them and we looked at different options. They both enjoy the beach and pools so we focused on some possibilities around that. We looked at different locations on the Cape, and New England. I think it is important to use these types of visuals to not only help in developing a summer vacation plan, but it also helps them to understand what to expect on vacation.

Strangely enough this time they both picked the same place, the Cape.  In the past, they have chosen different places which can make it more challenging to plan. We typically will pick one place for the beginning of the summer for a few days and then do few days at my other son’s choice at the end of the summer. I find breaking up the vacation helps fill in school vacation time as well as giving my family two mini vacations instead of one.  Sometimes a week or even two is too long for our kids.

This year will be a first as the both picked the same place so the plan will be to go for a week. Because my sons are on a special diet I will look for a place that has at least a kitchenette. This makes it easier to keep their diet consistent as there typically won’t be a lot of menu options at restaurants. Usually depending on where we go, I will do research online to see what restaurants are nearby and what possible menu options I can find. I make meals and freeze ahead as much as possible so that I can also get a break from cooking while on vacation.

I typically will make reservations mid –week as you will get better deals and most places are less crowded. Another good option for a summer vacation is to go either at the beginning or the end of the summer. I have found it not only easier to find room options.

Since they have now picked where we will be going, I have showed them online the hotel where we will be staying. In the past, I have found it extremely helpful to actually show them the space where we will be staying, the actual rooms and the environment.  In my planning process, I have looked at area attractions to see what would be fun to do with my sons. I showed them online and they have chosen a few options…I then will plug these items into a calendar to help them understand the timeline of when we are going away. Each child is different on how best to use visual supports. For one of my sons, having this available to him before our trip, helps decrease his anxiety around the change in his routine. The opposite is true for his twin, if he sees the calendar too soon; he gets even more anxious about the upcoming change in his routine.

I also like to bring the comforts of home to help them feel more comfortable on vacation. I will bring favorite blankets, pillows; DVD’s to watch as well sensory items. I always look on the website, www.bedbugregistry.com to see what the rating is for the hotel before booking with them.  I find that planning ahead and using visuals to help my sons understand what we will be doing helps make for a more enjoyable vacation experience.

Nurturing Relationships with First Respondents is on Form of Good Advocacy and Education

Our guest blogger this month is Dennis Polselli, Publicity Coordinator at Community Autism Resources.

I’ve been thinking a lot lately about disability and first respondents, especially in the wake of Ferguson Missouri and New York City. This is not a blog to bash police, not at all. It is a blog to point out how important it is for those of us with disabilities (and our care-givers, and service providers, who advocate for us) to use these tragedies to take steps in our own disability community to build concrete relationships with police and fire departments in our cities and towns.

I’m reminded of an article I read in 1988 in a publication for the Blind which detailed a misunderstanding between an individual who is blind and a police department in a community in California. This individual had a collapsible White Cane that can be broken down in 4 to 5 pieces. In order to use the cane, you pull up on the string and the pieces come together creating a useable White Cane. When the police officer was about to make an arrest of this blind individual, he grabbed his cane to use to move about, but the police officer thought he was grabbing for a weapon and threw the individual to the ground. It was fortunate that being pulled to the ground was the only thing the officer did and not something more drastic. There have also been instances where persons with cognitive disabilities were shot and killed by police in states like Arizona, California and New Mexico. When there is any kind of emergency, police need to act quickly. Our job, and I believe our responsibility, is to get on the calendars of Police and Fire Departments and provide in service training on issues involving disabilities from blindness, deafness, to individuals with cognitive disabilities.

I’m sure, in fact I know, that my colleagues here at Community Autism Resources would be happy to assist parents and advocates of individuals on the Autism Spectrum to provide any information you need to help local first respondents to understand the issues surrounding persons on the Autism Spectrum. This includes information on the ALEC Program. The ALEC (Autism and Law Enforcement Education and Coalition) program, a project of the The ARC of Bristol County that is now a national model, offers First Responders training programs. A number of the training programs have taken place throughout Southeastern Massachusetts. Please call Community Autism Resources for further information on the ALEC program and to find out if training has happened in your area. It is so important.

For 15 years at Framingham State University, my wife and I team-taught two sessions of a nursing course on how to deal with issues and support patients with disabilities. And, during my recent double by-pass heart surgery, I learned we have a long way to go in our efforts to educate and advocate with hospitals. If it weren’t for my sister, Barbara Domingue, and my wife’s advocacy, the experience would have been much worse than it turned out to be for at the beginning, people were coming in and out of my room not identifying themselves and performing different procedures on me.

We (as service providers, care-givers, and advocates) must take responsibility and introduce ourselves, and our issues, to Police, Fire officials, and medical establishments and they themselves, for the most part, would appreciate our assistance.

To find out more about ALEC or to set up an ALEC training session, contact Bill Cannata at: BCannata@arcsouthnorfolk.org or call The Arc of South Norfolk , 789 Clapboardtree Street, Westwood, MA 02090 at 781-762-4001, ext. 420.

ALEC facebook page address is: https://www.facebook.com/ALECtraining

A Different Pace Of Life

By: Kimberly Souza

I have been friends and a support staff with an incredibly outgoing and energetic man living with minimal supports in a residential home in the greater Fall River area. He is one of the most interesting people I know, he marches to his own drum, although he spends much of his time trying to fit in with the folks around him in his life at home, work and in the community.

We met years ago at a Day Program and though I didn’t work directly with him, we started to get to know each other, mostly because he was so interested to know everything I shared with him about my life. He seemed to constantly compare answers to questions about me to his own situation and lifestyle, always ready to try something new which could be difficult because he has been so many places and done so many things with a long list of past staff, friends and family.

His interests continue to amaze me to this day, how he can find joy in things many of us take for granted. For example watching the air traffic come and go from the airport, taking a ride on a train or even just going to Subway for lunch. I’ve been lucky to have been part of his life for many seasons and have helped him plan for so many outings and activities. He can be so focused on what is coming next but he has trouble focusing on enjoying the moment. When I look at the pace of his day life I’m blown away with how busy he wants to be all the time, so we go places and do lots of things but I also set an example with my own pace of life. Taking time to relax and have some down time, remembering to stop and smell the roses rather than moving from one thing to the next too fast and missing the little things that can mean so much.

So we go back and forth, each learning from the others personal pace of moving through each day. I look for the teaching moments whenever we spend time together but I’m not sure he is aware of all the teaching moments he has given me- just by being himself. We both learn a little each day from one another, mostly because we are all unique.

What’s Life without Friends?

What’s Life without Friends? I have worked in the human services field since 1991. In my twenty three year career I have worked for different agencies in group homes and day habilitation programs, working with children and adults with autism and or physically challenged individuals.

I am currently working with Community Autism Resources as an Autism Waiver Support Broker, and have been with the agency since October 2013. In my current position, I provide support to families who have been determined eligible for the waiver program in identifying appropriate services available.

One of my priorities, throughout my years of service in this field, has been to build a trusting and personal relationship and friendship with the individuals I have had the privilege of serving. I have always recognized the need to start by earning the trust of those I serve and support. That comes by treating them with respect, dignity and in a manner that every individual in society wants and expects to be treated.

I look for and at the potential and abilities that each individual has, and build on that. I always look at abilities, not disabilities. If a person is verbal, we would talk and laugh. If a person is non verbal, I still talk and laugh with them, but sometimes just sit and enjoy silence with them.

I make every attempt to lift their spirits when they are down and on many occasions I have been on the receiving end of having my spirits lifted by them in my time of need.

Everyone needs the freedom of choice and some control of their life. I allow individuals to make choices where applicable, and re-direct them when a choice they make is not in their best interest. Redirection is not always well received, but ultimately, they recognize they do have some freedom and control.

Everyone needs friends and people in their lives who genuinely care about them. One can never have too many friends in life. I have developed many friendships and relationships with individuals I have served and supported through the years, and their families. I am still involved socially with some individuals I no longer work with. I am fortunate to have developed these relationships through time and am thankful to have some of these people in my life, beyond my time of working with them. It makes their world and mine a bigger and brighter place.