The Importance of Debriefing Processes in the Field of Intervention

The purpose of this blog includes:

Ø Generate an interactive discussion on a topic often overlooked

Ø Generate questions and responses

Ø Encourage self-reflection

There are a number of questions asked throughout this blog. Please respond to not only the questions but responses of others.

The Importance of Debriefing Processes in the Field of Intervention

The role of the intervenor can sometimes be stressful and isolating without serious or critical incidents occurring. Intervenors whether working in schools, homes, community and/or in the workplace are often supporting individuals with deafblindness on a one to one basis and without other support present.

According to the Better Health Channel; “Debriefing (powerful event group support) is usually carried out within three to seven days of the critical incident, when workers have had enough time to take in the experience. Debriefing is not counselling. It is a structured voluntary discussion aimed at putting an abnormal event into perspective. It offers workers clarity about the critical incident they have experienced and assists them to establish a process for recovery.”

As an intervenor would you recognize a serious or critical incident? What would you consider a serious or critical incident?

 

A critical incident is any event or series of events that is sudden, overwhelming, threatening or prolonged. This may include an assault, behavioural incident, threats, severe injury, death, fire and situations dealing with mental health.

Have you experienced a serious or critical incident? As an intervenor what action did you take? What occurred afterwards?

 

Debriefing processes often occur in many other fields and are considered an essential service. After some discussion with agencies and school boards who support individuals with deafblindness; it was determined that this is a very individualized process and often does not include a formal policy and/or process.

Does the current or past agencies you have worked at have a process for debriefing?

Have you experienced the process of debriefing within the field of deafblindness/intervention and what did it include?

 

Critical incident can result in symptoms for the intervenor such as shock, denial, anger, rage, sadness, confusion, terror, shame, humiliation, grief, and sorrow. Other responses include restlessness, fatigue, frustration, fear, guilt, blame, grief, moodiness, sleep disturbance, eating disturbance, muscle tremors or "ticks", reactive depression, nightmares, profuse sweating episodes, heart palpitations, vomiting, diarrhea. hyper-vigilance, paranoia, phobic reaction and problems with concentration or anxiety (APA, 1994; Horowitz, 1976; Young, 1994). A debriefing process is a successful option when dealing with these situations if implemented in a timely manner.

Critical incident stress management (CISM) is a key element of debriefing processes. It provides support to assist the recovery of individuals experiencing normal distress following exposure to abnormal events. It is based on a series of comprehensive and confidential strategies that aim to minimize any adverse emotional reaction the person may have. Critical incident stress management strategies in the workplace include:

  • Preparing workers for a possible critical incident in the workplace
  • Demobilization (rest, information and time out – RIT)
  • Defusing (immediate small group support)
  • Debriefing (powerful event group support)
  • One-on-one support sessions
  • Follow-up support.

Demobilization is part of the debriefing process. Demobilization (rest, information and time out) is a way of calming workers following a critical incident and ensuring that their immediate needs are met.

A supervisor or manager who was not involved in the incident, or affected by it, carries out the demobilization. Here is an example of a demobilization process: A demobilization takes place before the end of a shift or before those involved in the incident disperse. Strategies include:

  • Convene a meeting for those involved as soon as possible.
  • Summarize the incident and clarify uncertainties.
  • Invite questions and discuss issues of concern.
  • Show care and support, including the provision of Psychological First Aid.
  • Draw up a plan of action, taking into account the needs of the workers.
  • Make short-term arrangements for work responsibilities.
  • Offer information on defusing and debriefing.

https://www.betterhealth.vic.gov.au/health/healthyliving/workplace-safety-coping-with-a-critical-incident

 

If the agency you work for doesn’t have a process for debriefing how might you assist in facilitating one?

 

When a serious or critical incident occurs more than just the paperwork needs to be considered. It is important as an Intervenor and/or manager to recognize when this process is needed and ensure the team has the support required. We all play an essential role in enhancing services and supports for both individuals with deafblindness and the teams supporting them. Debriefing is just one of the critical components necessary in our field. We spend a lot of time focusing on others as Intervenors but debriefing contributes to the overall wellness of the Intervenor including less sick time, less burnout and ability to function as positive member of your team.

 

Kirsty Wymant and Cheryl Ramey

 

 

 

 

 

A Day In The Life

When it began…

It all started with a social media post from a friend. She was asking if anyone had any experience working with those who have special needs or clients who are deafblind. While I had been a special needs worker with the same client since 2004, I had no idea what this position would entail. I submitted my resume and the process skyrocketed from there. My email had a response within the hour and an interview was booked for the following day.

Upon interviewing me they advised that I would be working with two individuals who had just graduated from high school. They had moved into their first home without their parents. I remember thinking to myself: “How much support would two high school graduates require …?”  Excited and nervous, after the interview I headed home and anticipated a call. I didn’t wait too long before I was contacted and given information about my eigh-hour volunteer shift.

 

Intervenor’s Motto: Do with, NOT for!

 

The BIG day!

A little less than a week later I pulled up to the address that had been provided to me. I was completely worried that I was going to park in someone’s spot, use the wrong door, be at the wrong house or worse the consumers (I learned this word for the individuals with whom we work in the interview!) would not like me. I knocked and was greeted by the Intervenor Services Coordinator. She welcomed me with a big smile into what I was hoping might be my new workplace.

The day was a blur; I was learning so many new things, it was invigorating being given the opportunity to discover the daily schedule of an individual who is deafblind. And let me tell you a little secret … it isn’t much different than someone who has sight and vision. Housework, grocery shopping, cleaning, laundry to name a few, are all completed by the consumer. They rely on us (intervenors), to bridge the sound and sight gap. Which is why our position is crucial. Not to mention our motto: “Do with, not for.”

As my first volunteer shift came to an end my IC approached me, wanting to check in as it wasn’t a seamless day. We had ups and we had downs, we had medical routines, meal routines and toileting routines. I remember as clear as day she asked me: “So, Victoria is this something you could see yourself doing?” In that single moment my fears of the consumers not liking me, fears of what door to use, which spot to park in -- all of it fell away. I knew in that exact moment that this was exactly what I could see myself doing, as long as they would have me.

 

Must learns and quick!

IV, IC, four key principles of intervention (A.M.C.C), About Me books, medical routines, outing routines, etiology of their deafblindess, likes, dislikes, memorize entire CDBA Ontario website! Learn Sign Exact English!

 

Training us, the right way

When your IC tells you that you get to go to Paris for training there, is a little piece of you that cannot believe they would do that! Probably because they wouldn’t send you to Paris, France, but the Paris they do send you to is a little town six hours away from Sudbury, Ont. If I thought I was nervous before I was wrong, these nerves were far worse. Going to learn intervention at a state-of-the-art resource centre built solely for individuals who are deafblind, a safe place to explore, learn and contribute to the community. Boy, I was feeling the butterflies! Surrounded by seasoned intervenors I began my first week of three for training. The instructors were phenomenal; the content was beyond valuable and each time I left the resource centre I believed more and more in my skills and abilities as an intervenor! Every time I returned back to my consumers’ home I found myself using my newly developed skills and applying them. I would have to say the best part was learning ASL (American Sign Language) even though my consumers communicate more with Sign Exact English, once you learn the alphabet you can pick up on a lot more!

 

If you don’t use it you lose it! Practice, practice, practice. Sign! Download signing apps!

 

When you finally get it

Recently my consumer had a difficult time that resulted in needing emergency care. In that setting I knew my only job was to keep them calm and provide them with all the situational information I could. I wanted them to know that I was there, supporting, encouraging and reassuring that all would be OK. To be honest I wasn’t sure if they really cared that I was there or if I was doing anything right or making a difference. Between the nurses and the doctors coming through I was the constant, my voice, my signing and our bond from the past nine months. Nine months may not sound like a long time at all but for my consumer and I it was long enough to build the foundation of trust and security. The big moment came when I was asked to step aside, I notified my consumer that I would just be to the side and would still be with them in the room. Within a couple of minutes hospital staff were asking me to come back to their side as I was helping to keep my consumer calm.

As an intervenor we sometimes don’t get an opportunity to test our bond, we don’t really know how deep or how strong it truly is. A bond between a consumer and intervenor is different for everyone. What my bond looks like may be entirely different than my colleagues, and that’s OK.

Not all of us are the same, and that is important for our consumers as they get distinctive things from different intervenors. You need to trust that when you are providing intervention each day, working on sign language, consumer goals, calendar systems, life skills, routines and enjoyable activities that they are all part of the bigger picture. In the grand scheme of things, the way in which we approach each activity, situation (positive or negative) or problem sets the expectation and groundwork for where our bond begins and ends.

 

“Kindness is the language which the deaf can hear and the blind can see.”

-Mark Twain

What the last year has taught me

The life of an intervenor may not have been something I knew I wanted to choose for my career. However, the stars aligned for me to do so. My first year as an intervenor thus far has been full of surprises, I have my doubts, my fears, my amazing moments, my bonds that continue to grow, and knowledge that continues to develop. I have learned a lot by trial and error, but primarily I have learned the most from my consumers, their families and the intervenors that surround me each day. We as intervenors are a rare and patient breed; we have an inch and make it a mile. We have to continuously be thinking not just outside the box but as far out and abstract as possible, to make the very most out of every single activity and excursion.

Being an intervenor isn’t for everyone, especially if you don’t have amazing supervisors, managers and mentors. Answering my friend that day was the best decision I could have made. CDBA Ontario is a phenomenal organization to be a part of and what’s better than waking each day excited to go to your job where you know you’ll make a difference. 

 

“The best and most beautiful things in the world cannot be seen or even touched - they must be felt with the heart.” -- Helen Keller

 

 

From one intervenor to another

We as intervenors are a rare and patient breed; we have an inch and make it a mile. We have to continuously be thinking not just outside the box but as far out and abstract as possible, to make the very most out of every single activity and excursion.

Intervention isn’t for everyone, especially if you don’t have amazing supervisors, managers and mentors. Answering my friend that day was the best decision I could have made. Intervention is one of the most phenomenal careers to be a part of and what’s better than waking each day excited to go to your job where you know you’ll make a difference.   

“In the middle of every difficulty lies opportunity.”

Albert Einstein


Victoria-Anne Holmes
Victoria-Anne Holmes is new to intervention and works for CDBA Ontario in its new Supported Independent Living Program in Sudbury. Her previous experiences include 14 years as a personal support worker and two years as a house parent dealing with a diverse group of children, youths and teens. Since having gastric bypass surgery in July of 2016, she felt it was important to branch out to a different career path not only for herself but for her family as well. She is now able to take her passion of working with others to new levels as each consumer has different needs and wants. Her knowledge and understanding is constantly growing and she is only just beginning!

Looking Back: 1992 Intervention Task Force Report

In 1992, the Intervenor Organization of Ontario, in partnership with other intervenor services providers across the province took part in an “Intervention Task Force”. This task force was intended to investigate and review intervenor services in the province of Ontario and was comprised of members from both acquired and congenital sectors, and from both children’s services and adult services. The task force looked at all areas relating to intervenor services in Ontario, including; education and training of intervenors, funding of intervenor services, and the profession of intervenors (regarding standards/regulation), among other areas. In the early 1990’s, the field of intervenor services in Ontario underwent a significant push toward professionalization, coinciding with the development of the Intervenor Program at George Brown College. Following the task force’s investigation and review of intervenor services in Ontario by this task force, a series of recommendations were developed and a report was written, with the goal of these recommendations to support further development, growth, and professionalism within intervenor services in Ontario. 

A copy of this report surfaced approximately one year ago, during a research project on the history of deafblindness in Canada which the Canadian Helen Keller Centre had undertaken and which I was fortunate to work on. The contents of this study are currently housed at the CHKC Training Centre, in the “Mae Brown Memorial Room”, in honour of Mae Brown, the first person with deafblindness in the British Commonwealth to graduate from university. History is something that belongs to each one of us involved in some way in the field of deafblindness and is constantly evolving, thanks to the hard work of numerous passionate individuals involved in deafblindness, and we as a field should take a great deal of pride in this unique history. The following report recommendations reflect only a small piece of the history, but it is my hope that by openly sharing information on the history, as a field, we can create a dialogue surrounding the history and work toward better preservation and dissemination of information about this incredibly important area of this diverse field. You may find some of these recommendations are no longer applicable, while others may spark a new interest for you. Regardless, I hope that you enjoy reviewing these recommendations and will take pride in how far we have come as a field. 

Note that in the report recommendations, the hyphenated spelling of “deaf-blind” has been maintained for historical purposes and preservation efforts, as this spelling was considered most appropriate during this time period. 

RECOMMENDATIONS

1. In the province of Ontario, intervention be recognized as a basic right and a necessary service required for persons who are deaf-blind, and be available in both English and French. 

 

2. The Ministry of the Attorney General recognize the right of deaf-blind persons to intervention services during the legal process. The services provided by the intervenor should be carried out in the consumer’s preferred mode of communication and where necessary adapted as required. Intervention services should be governed by the Code of Ethics of the Intervenor Organization of Ontario and should be accepted by the courts as a legal right of access to information. 

 

3. The Ministry of Colleges and Universities support college-level intervenor training programs and consider establishing satellite-training programs/courses in all regions of the province. The ministry should ensure that all such programs and courses are available in both English and French. 

 

4. The Ministry of Colleges and Universities develop a process for the assessment and evaluation of the current college intervenor program to ensure that it meets the needs of the community. 

 

5. The Ministry of Colleges and Universities support an application for an intervenor apprenticeship program in both English and French. 

 

6. School board intervenors receive at least 70 hours of orientation before they commence work with each student who is deaf-blind. Individualized training in communication skills should be in addition to this orientation. 

 

7. Boards of education consult with the Ministry of Education Deaf-Blind Resource Services Consultants, the deaf-blind student(s), and family member (or guardian/advocate) concerning the selection of school board intervenors. 

 

8. Standards be established for instructors in intervenor training programs. These standards should be established in collaboration with the Intervenor Organization of Ontario, consumers, and service providers. 

 

9. Training programs for instructors/facilitators in intervenor training programs be required and have as an entrance requirement appropriate previous experience in working with persons who are deaf-blind in the context of core subjects such as deaf-blind communication systems, 

orientation and mobility, safe travel techniques, and technical aids and devices. 

 

10. The Government of Ontario recognize and support the further development of the professional organization of intervenors, the Intervenor Organization of Ontario (I.O.O.). This professional organization should have at least the following responsibilities: offer professional certification to intervenors, be aware of current hiring practices, make recommendations regarding salaries and working conditions, establish a code of ethics, recommend the duties and responsibilities of intervenors, and provide professional development opportunities. 

 

11. The Ministry of Skills Development and the Ministry of Labour include the profession of intervenors in their catalogue. 

 

12. The Office for Disability Issues in collaboration with the Secretary of State establish public awareness programs about deaf-blindness and its implications. These programs should use a wide variety of media (braille, large print, video text, voice, sign language, pictograms, etc.) in order to reach the widest audience possible. 

 

13. Studies in deaf-blindness be incorporated within appropriate related programs at the university level- for example, in health and medical sciences and in specialist teacher training. 

 

14. The Government of Ontario establish an information service for consumers, family members, service providers, government departments, and other interested groups to collect and disseminate information on all intervention services available in Ontario to persons who are deaf-blind. This information service could be located within the Office for Disability Issues. 

 

15. The Office for Disability Issues act as a referral service for consumers complaint issues. 

 

16. An appropriate ministry establish a central registry of intervenors whereby deaf-blind individuals and the community can access qualified intervenors for the services they require. 

 

17. The Ministry of Community and Social Services review and inventory its current service areas to deaf-blind persons or all ages and consolidate them into a single service department under one administrative authority that would encompass and ensure universal services to persons who are deaf-blind. This would enable the ministry to provide streamlined, equitable, and consistent funding of intervention services. 

 

18. The Ministry of Community and Social Services appoint one program supervisor per region to be responsible for the supervision of all ministry-funded intervention services within his/her region. The regional program supervisors should meet at least twice a year to ensure consistency of service quality, quantity, and delivery throughout the province. 

 

19. The Ministry of Housing establish in the provincial Building Code architectural standards to accommodate persons who are deaf-blind and review the Building code to eliminate sensory barriers. To establish barrier-free environments, the ministry should consult with consumers and service providers to better understand the needs of persons who are deaf-blind. 

 

20. Retrofitting of government facilities include the elimination of sensory barriers as well as physical barriers. 

 

21. The Ministry of Health expands it Assistive Devices Program to include all technical devices that may be of assistance to persons who are deaf-blind and to ensure that funds are provided for training consumers in the use of the devices they have obtained through the ADP. 

 

22. The Ministry of Education, school boards, and the Ministry of Colleges and Universities ensure that all required specialized access equipment and supplies, including text-based devices, be made available to their deaf-blind students. Considerations should also be given to establishing a lending library for demonstration and experimentation. 

 

23. The Ministry of Health, the Ministry of Community and Social Services, and other ministries that provide essential services (legal, medical, housing, etc.) allocate targeted funding to ensure that intervention services are available to individuals requiring them. 

 

24. Funds be made available for employment counseling and placement services for persons who are deaf-blind. 

 

25. Funds be made available for supported employment of persons who are deaf-blind. 

 

26. All ministries fund intervention services on an equal basis according to the amount and nature of required/requested services. 

 

27. That funds be provided for the expansion of intervention services to deaf-blind persons who at present are under-served or are not being served at all- for example, seniors, Native people, residents of northern Ontario, Franco-Ontarians, and those on waiting lists for service. 

 

28. All ministries follow a provincial pay scale for intervenor services as recommended by the Intervenor Organization of Ontario. 

 

29. The Ministry of Community and Social Services and the Ministry of Education establish direct funding as a right to deaf-blind persons over the age 18 for hiring intervenors for intervention services. 

 

30. The Government of Ontario provide funding to support research on deaf-blindness (and the publication of such research) and the development of programs, program materials in both English and French, and technical devices designed specifically for persons who are deaf-blind. 

 

31. The Ministry of Education Alternative Funding Program include sufficient funds for initial and ongoing training of school board intervenors and stipulate that these funds be used for those purposes and, in addition, that funds be made available for trained supply intervenors.


Laura Aguiar
Laura is a Project Coordinator on the history of deafblindness in Canada and an Intervenor with the Canadian Helen Keller Centre. She is a graduate of the George Brown College Intervenor Program and is currently Vice-President with the IOO and a member of the ISHRS Marketing and Communications Sub-Committee.

Healthy Sexuality

Intervention can be a complex and diverse field. We understand that we are going to be a crucial part of another person’s day-to-day life. But do we all know what this really entails; how complex each person can be and understanding and supporting them to the best of our abilities? Today I want to talk a little bit about one of those areas of support, and it’s one that tends to make some people a little uncomfortable. Sexuality. Many of us are working with adults and probably assume that this topic was covered in their childhood education. Some of us work with individuals who are also experiencing other developmental disabilities, and may not think this area is something that we need to be concerned with. I’m here to provide you with another point of view and maybe give you cause for consideration.

What does sexuality mean, when in reality it means something different to each and every person? In a room full of people, you will have a room full of different answers to this question. The most basic definition states “a person’s capacity for sexual feelings,” while more broad definitions include sexual orientation and gender. In today’s society, there is a general belief and understanding that sexuality is something that every person develops and experiences. But it wasn’t that long ago that it was a common myth that children and teens with developmental disabilities didn’t require sexual education as they would not develop into sexually mature adults. Depending on the age of your consumer, there may have been a completely different focus, or lack thereof, when it comes to sexual education.

Generally, we tend to break down sexual education to include physical development and changes, hygiene, privacy and personal boundaries. Most of us probably remember some fraction of this information from our elementary school days. How about your consumers? Most of our consumers were in a different line of education, focusing more on basic concepts required to encourage communication and language. If sexual education isn’t a realization during their school years, where does the responsibility fall? As previously discussed, sexuality is a part of every person, so there is an incredible responsibility to help our consumers understand their own bodies and feelings associated with sex and sexuality. They need information that is clear and concise and presented at their level of developmental functioning, in a means of communication that they best understand. For some consumers this may also cover topics like safe dating, safe sex, sexual consent and abuse, and sexual orientation.

It also is important to consider the barriers that arise for our consumers. Most children who are sighted/hearing can learn to pick up on the subtle hints society puts out. They start to understand modesty, and appropriate sexual behaviour, by watching and learning from the world around them. Many of our consumers are never afforded that opportunity, and don’t have the ability to learn about society’s expectations without being directly taught. Society can also be unforgiving when it comes to sexually inappropriate behaviour, and providing this education can be a key component to ensuring our consumers can integrate into society successfully.

Now to consider what barriers arise for us, the intervenors. Some people aren’t comfortable openly talking about sex and the human body. Depending on your consumer’s specific situation, do you have other family members to consult and discuss this with? Do you believe they will be supportive of learning about sexuality? Do you struggle with how you will teach about sexuality if your consumer has limited sight/hearing? How do you approach this topic in a way that will be successful? What are the building blocks to ensure you are providing your consumer with all the information to help them understand? Are you worried how your coworkers or consumer’s family members will view you after broaching this topic? Will they think you are acting inappropriately? How do you move forward, feeling safe and supported, as an intervenor?

These are all valid questions, and I don’t know that there is a clear answer to them that can be applied across the board. Sexuality is such a tough subject, and can bring up a lot of feelings and frustration for everyone involved. But I ask you this, would you rather suffer that frustration trying to provide support to your consumer? Or leave your consumer feeling this frustration at not understanding their own body and feelings? I promise you that if you have any concerns about your consumer and their own understanding of sexuality, moving forward in any way possible, is better than not moving forward at all.

Robbie Blaha, a teacher of students who are deafblind at the Texas School for the Blind and Visually Impaired, has done extensive writing on this topic and has numerous resources to offer to anyone interested. She offers suggestions for how to go about approaching the topic and preparing yourself and your agency. She also talks about tips on how to build basic concepts and move forward depending on your consumer. I would advise you to start within your organization. Seek support from your immediate supervisor and anyone else who may have something to offer. The training department, for example, may have access to some amazing resources already. Ask for support when approaching the rest of the team and come up with a clear plan about what you are hoping to achieve and why you think it is important for your consumer. With a touchy subject such as this, it’s important to have the support of your employer, and to have a clear goal.

One of the biggest barriers can be family members, and while it can be a source of frustration, it is also of the utmost importance that you involve them and receive their support. Each family has a different set of values and beliefs, and this includes sexuality. Respecting the family and their wishes is key. If you bring forward a well thought out plan, in most cases, the family will want the same things for their child/sibling/parent. No one wants to think someone that they care about is struggling.

At the end of the day, sexuality is just one more thing that we need to provide equal access, and ensure that every member of our society is able to make informed decisions.


Danielle Halliday.jpg

Danielle Halliday

Danielle Halliday is a support intervenor with CDBA Ontario in the Supported Independent Living Program in Kingston. Danielle has been working with CDBA Ontario for six and a half years. She enjoys bringing her passions to her consumers, such as crafting, reading and planning outings in the community.

Mental Health and Deafblindness

One in five Canadians will experience a mental health problem in their lifetime.   Indirectly therefore, mental health affects all of us.  Gender, age, family history, genetics, stress, loss and trauma, including deafblindness, are all contributing factors to mental health.  

Given these facts, it is highly likely that during your career as an intervenor you will support someone who is deafblind that also has a mental health problem.  This could be as an intervenor for a medical or psychiatric appointment, following a behaviour support plan, providing options for support, having coffee together, or walking.

Having had many conversations over tea at Tim Horton’s, there were times I felt, “what should I say or not say, I’m not a counsellor”.   Fortunately, I had the opportunity to take Mental Health First Aid, a 2 day course similar to First Aid but for mental health, through the Mental Health Commission of Canada.   It gave me valuable skills and the confidence to support many different people in my life with mental health problems.   It’s not, nor is there, a magic pill to make things all better.  And some pills do help, some cause side effects, and some will need adjusting.   It is not an exact science.   Treatment plans often include, but aren’t limited to, conventional medicine.    

Years ago, I was at an appointment with a consumer who hoped the doctor would prescribe a new regime of pills.  Instead, the doctor prescribed connecting with family through letters, and going for a daily walk.  

I’ve told this story many times, but I’ll tell it again.  One consumer thanked me for intervening during a complicated appointment.   I responded by saying “no problem, it was nice to feel needed”.   They stopped in their tracks and kindly reminded me that going for walk together, something they could no longer do on their own, was just as or even more important.   They acknowledged that walking was part of their own personal self-care plan.

A presenter at a past symposium told a story about supervising a shift with a consumer who went to work in an office with an intervenor.  As they entered the office, the receptionist and intervenor exchanged morning pleasantries while the consumer was guided through without engaging with anyone.  He told another story of how an intervenor guided a consumer to a table in a local coffee shop and proceeded alone to buy coffee and therefore to socially engage with the barista.  Caffeine itself and having a job both have many intrinsic benefits, but it`s the social connections you make while doing them that feed the soul and make someone feel part of their greater community.   It’s part of the intervenor’s role to facilitate these interactions.  

Whether prescribed by a doctor, part of someone’s regular routine, or something they are trying for the first time, I would hope as intervenors we don’t negate the importance of, and our role in maintaining, sustaining and initiating exercise or social connections and its subsequent impact on mental health.

Thanks to the various social groups in the community: DBAT, CNSDB, and Deaf-Blind Adventurers, as well as on-line resources, there are many options for individuals who are deafblind to connect with others.   There is still work to be done to ensure professionals understand the role of the intervenor and the specific and individual needs of someone who is deafblind.   Gradually there are more resources available such as counsellors who are deaf or deafblind, and help lines that allow for alternate communication methods such as texting.   I may be biased, because I am also an instructor, but I highly recommend that Mental Health First Aid be mandated for all employers similar to First Aid.   I would bet that you are more likely to support a colleague or consumer through a mental health problem or crisis than treat a broken arm.    As an intervenor having skills and knowledge related to mental health, adds to the behavioural and technical skills you already need and use every day.


Renée Toninger
Renée has been working in the field of deafblindness for over 23 years.  She has worked in both the congenital and acquired fields.  After many years as an intervenor and Community Services Coordinator with CHKC, she now holds the position of Intervenor Services Manager for the organization. Renée has a Specialized Honours Degree in Psychology with advanced mental health training and experience.  She is a Mental Health First Aid Instructor.

 

“Do with, not for”

I remember when I first started to get my head around intervention.  It was the night after my Kiddo’s sedated hearing test and I knelt by his bed in the dark room, rocking and sobbing, unable to wear out the frantic energy that I’d been running on since receiving the diagnosis that day.  My child had auditory neuropathy and combined with his cortical visual impairment, he was deafblind.  We had a formal diagnosis for what we had always known.  In the darkness, silent except for my crying, I couldn’t explain why the scientific naming of what I already knew made such a difference.  I don’t remember how long this lasted, but it felt like an eternity as I went through my own childhood memories, trying to find ones that did not include either visual or auditory stimuli.  I do remember when it ended.  A little body propelled itself out of bed and my son climbed into my lap.  This little boy, who couldn’t see me and couldn’t hear me, had felt the vibrations of my rocking and wished to capitalize on a snuggling opportunity.  Once the surprise passed, complete with minor trepidation over whether my mini-human would be in agreement that it was definitely time to be sleeping, we rocked together.  I remember the smell of baby shampoo from the head nestled into my shoulder, the slight drag of his footie jammies on the carpet, the constant beat of his heart against my chest, and, gradually, his tightly hugging little arms loosened as he drifted back into sleep.  I settled him back into his bed, his blankie clutched in his arm, the blankets (velour, corduroy, and fleece) pulled up to keep him warm, his head on the slippery satin pillowcase that he loved.  That night stands out as one of my most tactile and vibrant memories.

Why do I share one of my most personal stories about living with deafblindess?  Because in a lot of ways it was my “light bulb” moment for intervention: do with, not for.  I learned from my child.  Whether he could name it or not, he had experienced my grief through its tactile process: from the initial moist, sobbing, shallow breathing, heart racing, body rocking intensity to the slowly calming, and finally deep breathing, if slightly sniffling moments.  On the other side of this experience, he was the same beloved child that night as he had been before his hearing test, but I realized that he had still learned about grief from all the non-auditory/non-visual elements of my grieving process, notably for a child that had never been part of either my son’s or his mother’s life.  I was part of the meaning making for his learning about grief/sadness; a memory that I cherish and that changed my understanding of both Deafblindness and experiential intervention.

The beliefs for intervention are fundamentally tied to accessibility and equity.  As a mother of a Deafblind child (cultural identification), I wholeheartedly subscribe to the belief that my child lives a difference in experience, but not a lesser experience.  Being the parent of a child that lives outside the milestones and social norms?  It is terrifying, it is difficult, it is sometimes sorrowful, it is freeing, it is unique, it is understood only by those that live it, it is tactile, it is attention to detail, it is joyful, it is motivating, it is an opportunity for constant learning, it is my life and I would not change it.

Intervenors are a key part of this lived experience, both for my son and for myself.  When people ask me what I look for in an Intervenor, they are often a bit surprised by my response.  I do not tell them about the character traits or my educational expectations rather, I tell them that I generally look for prominent tattoos.  Yes, I know that sounds superficial and completely irrelevant, but it’s not.  I am looking for individuals that are comfortable with not fitting society’s expectations and that are comfortable being stared at and will be unfazed.  Because, let me tell you, my child’s exploration and information gathering guarantees stares and onlooker whispering/questioning.  If that is an uncomfortable experience for the person supporting my child’s meaning making, then that’s not the right fit.  I want the person supporting my child’s exploration and learning and meaning making to be okay with living outside the milestones and social expectations.  I want someone that is unfazed by discomfort because how my child learns and gathers information can be uncomfortable and generally seems to involve a lot of dirt, water, sticks, leaves, and all kinds of griminess.  For example, when learning about drain systems and where all the water goes that doesn’t get stored in the rain boots (note to self, always store rain boots soles up or risk a moist surprise when stepping into them!), he gets into the puddle or gutter, down on his hands and knees, feeling the water running down into the drain spout, exploring as the water pulls twigs and leaves and little bits of gravel into the drain.  I want my child to have every opportunity to learn, to have his endless curiosity encouraged.  He deserves to have his fascinations and interests supported; even if I wince every time I watch him walk over his Legos with his little bare feet, screaming with excitement and amusement at the prickliness of it all!  What I look for in Intervenors are people that look for the multi-sensory opportunities in every experience; the greatest Intervenors are those awesome professionals that take as much pride in supporting my son’s experiential learning as he delights in the process.  I am very fortunate to have had a number of truly exceptional Intervenors in my son’s life and I am profoundly grateful for both what they have given my child and for what they have taught me about who my son is: scientist, artist, Lego-fanatic, Google Maps reading mastermind, daydreamer, friend, stubborn over-achiever, and genuinely caring mini-human.


Elizabeth Fennelly
Elizabeth Fennelly is a mom, paralegal, social worker, and lifelong student (sometimes in the formal education system). She is extremely grateful to have the privilege of serving on the boards of the Canadian Deafblind Association - Ontario Chapter as well as the Ontario Association of Social Workers - Eastern Branch.  Her greatest pride is in being Shawn's mom with its opportunities to support Shawn's meaning-making and advocate for equity.

Top 10 Communication Tips

Communication is one of the most difficult things to be consistently successful at.  So many things play into the formula for a positive outcome. This topic has been debated as far back as biblical times.

I have been an intervenor for over 30 years, and I still have days when I go home and wonder “what the heck am I doing?!” Then, the next day I have an awesome day and think, “OK, I’m not so bad after all!!”  

I’d like to share the top ten communication tips that I have found help me the most. Keep in mind, this is how I rate them; every consumer and situation is unique and the order of importance may change each time. Treat them as guidelines, and “tweak” them as needed.

When I am researching a topic, I like to start out with the true definition of the word; because it provides a solid, credible starting place to base my opinions.

Wikipedia defines communication, as the exchange of thoughts, messages, or information, as by speech, signals, writing, or behavior. It’s derived from the Latin word “communis”, meaning to share.

Communication requires a sender, a message, and a recipient. It is complete once the receiver has understood the message of the sender.

George Bernard Shaw, the Noble Prize winning playwright said, “The single biggest problem with communication is the illusion that it has taken place”. 

Feedback is critical to effective communication between participants.

I love observing people trying to communicate with each other, to see how often they are successful or not, and how long it takes.

I overheard four men talking in a restaurant. It took one of them, four or five times telling another one, he had gone fishing at a particular lake, before the guy “got it”. That amazed me!

I was at a birthday party for a four-year-old.  When it came time to open her many gifts, she was amazing. She was patient, looked and commented on each gift as she opened it, and listened while her mom read her each card. What I found so interesting, was when she was all finished, she picked up two items and went over to her grandma; “Grandma, I got a photo album and a puppy (stuffed) for my birthday”!  Then, off she went to show her friends and play. Those two gifts are what she had retained, because that’s what was most important to her. It made me think about what our clients take away from their experience while with an intervenor.

These communication tips are not things you can learn in a day.  Read them, talk about them, practise them and eventually they will become second nature.

1.Cultural Awareness: 

Google this term and you will see how many ways culture can affect communication success. Two quick examples:

a.  Some cultures have different viewpoints on dogs; they don’t make the distinction between service dogs, pets and strays. Our clients have come across this regarding access to taxis and some small stores.

b. Something as basic as greetings, what’s acceptable?  Eye contact? Physical contact, (shaking hands, hugging)? Male and female differences.

2.Be Assertive (not aggressive): This is a necessary skill to have.

There is a fine line between assertiveness and aggression.  Definitions are helpful when trying to separate the two:

• Assertiveness is based on balance. It requires being forthright about your wants and needs while still considering the rights, needs, and wants of others.  When you are assertive, you ask for what you want but you don’t necessarily get it.

• Aggressive behavior is based on winning. It requires that you do what is in your own best interest, without regard for the rights, needs, feelings or desires of others. When you are aggressive, you take what you want regardless, and you don’t usually ask.

 

3.Rapport:  It’s the bond that brings people together.

• Confidentiality – mean what you say (clients will test you, to make sure they can trust you).

Stephen R. Covey, who wrote “The 7 Habits of Highly Effective People: Powerful Lessons in Personal Change” said “When the trust account is high, communication is easy, instant, and effective.”

Be prepared to earn trust and not expect it.

• Consistency – When a consumer knows what to expect from you, it creates a sense of dependability.

• Names – Whomever your consumer may be dealing with (e.g., restaurants, stores, medical apt etc.), know their names ahead of time, if possible, or find out once you arrive. 

This gives the client power of choice for service; it shows interest, enriches their experience and is the quickest way to establish a connection.

4.Preparation: There are a few things to consider.

• "Elevator Pitch" - an elevator pitch is a brief, persuasive speech that you use to spark interest or explain a concept. It should last no longer than 20 – 30 seconds. It should be interesting, memorable and succinct.

• Initial phone call (for an appointment), to introduce your role, and negotiate time appropriately.

• Strategize - ask the client how they want to approach the situation, or figure out what works best. For example, in a medical appointment, a consumer may be stressed and find it difficult to concentrate on what the doctor is telling them. It may be helpful to discuss (ahead of time), what they want to hear about or address first. Then, they feel in control and you have an environment for a positive outcome.

This is also helpful when helping a consumer structure their intervention time, to make sure their most important requests are completed.

• Environment - lighting, AC, speakers, distractions, what is happening; the client can interject and take control.

• Client's Physical Needs - mobility issues, proximity to facilities, cushions for sitting, stamina, etc.

 

5.Don’t Judge or Assume:   

You don’t know what someone else’s experiences have been and what their triggers might be. 

Exercise patience and observation. (This is a skill that deafblind people need as well). Two examples:

a. Many years ago, before cell phones, a senior client (that has since passed away), who was totally deafblind, was returning from Toronto by Via Train. An intervenor had assisted him to get on the train, and an intervenor was waiting in Ottawa to meet him to help him off. During the trip, he asked the server for a beer. When none came, he asked again. After a longer time, when no beer had appeared, he exclaimed “Where the hell is my beer!” Soon the train stopped and he was escorted off the train and had to walk a bit with assistance, to a waiting area. He was helped into a car, and headed out on a long drive.  To make a very long story short, by the time the intervenor caught up to him he was convinced he had been kicked off the train because he had sworn (the assumption). In reality, the train had broken down mid-trip and alternate transportation had to be arranged for everyone. The reason he had not received his beer, was because it was Election Day, and the poles had not closed!

b. This involves the same client. I received a call after hours (way before Emergency Intervenor Services J), that this client had to go to Emergency and that the ambulance had been called. I was able to get to the client's residence quickly, and could hear yelling down the hall before ever getting to the room. Once there, I observed the ambulance attendants trying to get the client onto the stretcher; he was having none of it! 

I introduced myself, and it appeared the paramedics opinion of me was about a 0 on a scale of 1-10 (the assumption). 

I asked them what they wanted the client to do. Once explained, I excused myself, stepped forward, touched the client (a two-hand manual user) with our tactile sign we had set up to use for emergencies, so he would know it was me. I let him know what he needed to do. He went from a resistant, yelling person to a complacent, cooperative patient. When I looked up, the paramedic’s mouths were still open! My value to them had gone up to a 10 and they were not letting me out of their sight. They helped me into the back of the ambulance with the client, and we were off.

Other good examples on You Tube on assumptions:

Susan Boyle (Britain’s Got Talent First Audition)

Homeless Boy Steals the Talent Show (June13/11)

Best Commercial Ever!

 

6.Plan “B”: Thinking on your feet! The secret, is to be prepared!

• Anticipate what might happen and plan for it.  However, when we think we have done everything right, it can still get mixed up. The following are two examples:

a. I attended a speaking engagement where the speaker was deafblind and was an ASL user. A lot of attention had been made to ensure everything was set up appropriately. However, before things could proceed, the speaker had to request changes to the AC, lighting (the projector in relation to where the interpreter was sitting), where people that needed voice over were sitting, where the interpreter was sitting for the speaker.

b. I was going to be teaching a deafblind person how to use the two-hand manual for the first time, and had put a lot of time into planning it. I had 10 lessons ready. After my first attempt, I realized very quickly that I would have to go back to the drawing board. A lot of the references I was making to explain how to make a letter, were not being understood; the client was unaware of the names for the parts of the hand. 

7.Feedback: - Stop and Check

A client will often understand the words spoken, but not the message behind them (this happens to everyone at one time or another).

Many times, we have seen two or more people talking, but they are having two separate conversations.

When something is going wrong, often word choice can be your friend. Instead of asking “What’s wrong?" or “What’s the problem?", I like to ask “What do you want to do”? or “What do you want me to do?”

Clients often don’t know how to articulate the problem or to express what is bothering them, but they can easily tell you what they want to do right then. It empowers them to take control, or have input to sort out their situation, (it relates closely with listening). I have found that this is a fast way to get back on track and make the best of things.

Suggested video on YouTube:

The Power of Words (a woman changes a blind man’s day)

8.Active Listening: (Charlie Kaufman said “Constantly talking isn’t necessarily communicating.”)

Listening is one of the most important skills you can have.  How well you listen has a major impact on your job effectiveness and on the quality of your relationships with others. Three examples follow:

a. (Listening) A client is flying to the U.S. The client and intervenor had made two trips to the airport prior to the actual departure date, to make sure they had covered everything (we had learned from previous trips) and were comfortable everything was set. On the actual day of departure, the intervenor observed the flight crew discussing whether the deafblind person would be allowed to fly. The intervenor relayed what was being discussed and the client interjected. The result, the client advocated for their rights and boarded the plane. Knowing the names, reading the body language, and timing all played into the successful outcome.

b. (Not listening) I was at a hospital surgery assignment and had done the prep with the client prior to the appointment. We were in the operating theatre and everything had been explained, confirmed etc. and the client was okay. I asked the staff if there was anything else they were going to do that needed to be explained to client – no was the response.  They did not seem concerned where I would be, however I let them know I would be at the payphones (again, before cell phones), checking my messages from the office. I had no sooner gotten into my first message, when I looked up and saw the nurse from the operating room running towards me, motioning for me to come. Long story short, they had decided to do something different than what they had explained to the client and she resisted, sat upright on the table and was yelling for her intervenor. 

I asked them what they had done differently, relayed this to the client, and once the client understood, the process could continue. I can tell you, the staff payed much more attention to where I was going to be the second time around! J

c. (Not listening) I was with a client who was waiting to go in for cataract surgery. The hospital staff had observed me working with the client and I explained my role. We were just outside the surgery theatre waiting for anesthesia. I must have asked at least three times if they had gotten all the information they needed from the client. I explained why I was asking and what the consequences would be. Again, they confirmed they had everything. So, anesthesia was administered, and about one minute later, medical staff came up and wanted some information. When they realized, the client was unable to comply (and their error), they simply turned to the intervenor for the information. I repeated my best “elevator pitch” again of my role. But it was too late, and they had to carry on. 

9.Sketch, Shade, Colour (SSC):  As quickly as you can, give the client a full sense of where they are and what is going on – a sense of the room. Often, this is done in between other things. Break it into steps, and it will make the process smooth and not rushed. I use the analogy of drawing a picture; first you make a sketch, then you shade it in and finally you add the color.

10.Eye Contact:  When you make eye contact with someone, you are telling the person you are important to me. Wherever your eyes are, that's who has control of the conversation. 

"Don't give away your eyes". Keep them on your consumer, rather than on who is speaking to them (other than the occasional glance). This makes it virtually impossible for them to direct comments to the intervenor to "speed things up", or get side tracked. It also makes it very clear to your consumer and the people you are speaking with, who the priority of this interchange is.     

Examples: (Medical appointments, Kiosks in Malls, Clerks, Airports etc.)

 

In closing, I would like to leave you with three last thoughts.

1.  A quick way to self-check: consider if someone were to “capture” your intervention time with a client and post it on YouTube. Would you be proud of the intervenor service you provided? (Never forget people are always watching these unique methods of communication.) 

2. Always have a Plan B (C, D…).

3. Have a sense of humour! 


Maureen O'Brien
I’ve been an Intervenor for over 30 years and I love this job as much now, as the first year I started. My experiences over the years have been primarily in the adventitious area of deafblindness.
The following are 10 observations I’ve made over the years and realize I have assimilated them into my style or approach to Intervening. 
When I meet new Intervenors to the field or have discussions with seasoned Intervenors that have questions for me, I find these ten “tips” are what I most often end up talking about and encourage people to try, for a more positive outcome for all involved. 

Oral Intervening: More Than Just Words

I used to think of myself as an oral interpreter. I submitted invoices for oral interpreting, gave workshops on oral interpreting and if you asked me, I'd say I was an oral interpreter. But I was wrong.

This realization only came gradually. Over the years, particularly with the increase in use in cochlear implants, I found myself providing intervenor services to individuals who did not rely on ASL, but who needed me to articulate in a clear, accessible manner. I didn't feel comfortable calling it oral interpreting because … well, it wasn't just interpreting!

An oral interpreter does not actually use his or her voice. An oral interpreter doesn't give visual or environmental information. An interpreter doesn't adapt the communication to specifically meet the needs of just one individual.

I just didn't know what to call myself. I'd skirt around the issue and describe what I did instead of giving myself a title. Eventually I had to come to terms with this. It became clear.

I am an intervenor, not an interpreter.

It came to me one day when I was watching an interpreter at a meeting. The sign language was excellent, but it felt like something was missing. When the speakers stopped speaking, the interpreter stopped signing.

There was so much else going on that was overlooked. What about the participant who was incessantly texting and unable to answer a question? What about the information on the PowerPoint slide projected on the front wall? What about the looks of confusion as the budget report was tabled?

It was then that I realized what I love most about being an intervenor. It is making the experience come alive. The words may be black and white but the colour is in all the details.


Julie Reid
Julie Reid has worked in the field of deafblindness for over 30 years. Initially with the Summer Intervention Program, she worked with an individual with congenital deafblindness. She then provided intervenor services for individuals with acquired deafblindness through Deaf Blind Services, CNIB where she also designed and implemented the Deaf-blind Literacy Program. She has taught in the Intervenor Program at George Brown College since its inception in 1991 and was one of the founding members of the IOO.

Orientation and Mobility for Persons who are Deafblind

          Orientation and mobility is the study and teaching of skills to facilitate the learning of safe independent travel skills for a person that is blind or visually impaired. Orientation and mobility, known as O&M for short, teaches someone the skills in order for them to live an independent, happy, meaningful, and productive life. A professional that specializes in this field is called an Orientation and Mobility Specialist, and if they are certified in the field, they are a Certified Orientation and Mobility Specialist; identified as COMS for short. The licensing and governing board for this profession is called ACVREP, which stands for Academy of Certification for Vision Rehabilitation and Education Professionals. ACVREP certifies service providers within vision rehabilitation and more specifically certifies Low Vision Therapists (CLVT), Vision Rehabilitation Therapists (CVRT), Assistive Technology Instruction Specialist (CATIS), and Orientation and Mobility Specialists (COMS).

 

            Orientation and mobility instruction teaches a person that is congenitally or adventitiously blind how to navigate both familiar and unfamiliar, and indoor and outdoor environments. Some learn how to travel safely with use of their residual vision, some learn to travel with a white cane, and other advanced travellers have the option to learn to travel with a guide dog. For some, training may look like learning how to navigate from their bedroom to the bathroom, or down the stairs to the kitchen. For others, it is learning how to travel around their neighborhood, using a white cane, and completing street crossings to get to their desired destination. It could also mean learning different routes on public transportation to complete errands or get to their place of employment. Everyone’s journey is uniquely different, and all require not only the physical mobility piece, but also the cognitive capacity to effectively problem solve and process clues and cues within their environment.

 

              What some would describe as a simple task may be a difficult complex skill that is practiced for weeks or even months. O&M requires body awareness and physical movement in space, but also the comprehension of orientation and being able to self-assemble a mental map. It is the understanding of knowing where you are and where you want to go, and constructing a plan of how to get there. Indoor mobility training may include self-protection techniques, negotiating stairs, search patterns, dropped objects, trailing, seating, and auditorium seating to name a few. Outdoor mobility may include learning how to use a white cane, how to identify landmarks, how to process auditory feedback, neighborhood travel, street crossings, and public transit.  Overall, O&M encompasses a vast amount of skills that the average sighted person may not even realize are skills. O&M can be mentally and emotionally draining, but the results can be utterly life changing. 


 
Desrianne McIlwrick
Desrianne McIlwrick at the Canadian Helen Keller Centre is a Certified Orientation and Mobility Specialist that provides O&M services to individuals that have dual sensory loss. She takes prides in her job, enjoys teaching, and enjoys sharing her passion of the field. If you have any questions, concerns, or even have a friend or family member in mind that may benefit from training in this area or more information, feel free to contact her at dmcilwrick@chkc.org

Growing Up with a Sister Who is Deafblind

Growing up with my sister Alecia, I had little idea she was different than anybody else. Oh sure, I knew she was ‘sick’ -- that she had a rare degenerative disease that required many visits to doctors and specialists, and more than one trip to the famous-to-me SickKids Hospital -- but day to day, she was just my little sister, Alecia.

We grew in a very loving, supportive family. My parents had us young -- myself being first born while they were in their teens. My sister Alecia came four years later and then Jessica, eight years after me. My youngest sister, Emily, joined soon after Jessica. It was a full house!

My father was and is a master tradesman in drywall. The family business in our home town of Orillia is still going today in its fourth generation. My mother was a stay-at-home even while a changing economy started to make that difficult. My parents felt it important she be home to raise all of us. I only realized later, as an adult, what an awesome sacrifice that was. All of us kids benefitted from that daily motherly presence, especially Alecia who had special needs.

Despite our family being a blue-collar family, albeit a master in the trade, my parents were no less undaunted to learn as much about my sister’s disease and get her the most advanced medical and social help available to her to ensure her quality of life. They poured all their spare time and efforts into this while we kids grew up together, oblivious to the extraordinary circumstances of Alecia’s disability and my parents’ efforts to give her (and us) the best life possible.

Day to day, growing up with Alecia seemed rather normal to me when compared to other families. Good-natured sibling rivalry was rampant at our home. I remember one time I stubbed my toe and while hopping in pain Alecia howled in laughter at my expense. Don’t worry -- I showed her: As a little blind girl, my sister was a “mapper,” meaning she mapped and remembered where all the furniture was located in the house, to such a degree you would barely believe she had less than 10 per cent of her vision. Using this knowledge to my advantage, I rearranged the furniture in the living room and waited for her to come downstairs, laughing in revenge as she tripped over furniture she didn’t know was there. Antics and pranks like this between us were common and I developed a deep level of protectiveness over my sister; the kind of adolescent older-brother ridiculous logic that I could be mean to my sister, but no one else was allowed to be.

All the while, I didn’t think my sister was that different from anyone else. You see, my sister never really thought herself as blind and deaf, she just was who she was. Her day-to-day joy was unbridled and she was (and still is) a joy to everyone around her. Always with a smile, always willing to help to the maximum of her limited capacity and never complained about her station in life. Indeed, Alecia and her attitude about life stopped us dead in our tracks during the times when we siblings would moan and complain about the trivial things that young kids and teens complain about. Our thoughts being: “You know ... we really don’t have it that bad!

My sister Alecia fights a degenerative disease. It claimed most of her sight and most of her hearing at a young age and started to attack her organs and even her teeth. Through the genius of concerned doctors at SickKids Hospital, they learned to stay the progress of her illness through diet alone. We are thankful we live in Canada, where these resources are available to us to (primarily) help my sister, who is sick, but also for Canada’s medical community to continue world-class research into making lives better. Constant visits to the doctors went unnoticed by us siblings, Alecia was just Alecia, and she always came home with a big smile on her face and unapologetic to continue on living life as if it never occurred that she were that different, being blind and deaf.

This all being said, our acceptance and love for Alecia didn’t mean she lived a normal life like you and I. Having less than 10 per cent vision and hearing growing up made for a very different and modified world for her outside the home. She grew up with modified learning programs to accommodate her level of intake of knowledge due to her condition, and she couldn’t be off the home property without an escort to be her “eyes” and “ears” and she’ll never be able to live fully alone and independently. But to see her walking down the street and meet her, you would never guess! She is so happy and interactive to meet new people and have new experiences.

In a way, our family was lucky to have such a high-functioning, overcome-all-odds-attitude deafblind family member. I know of other deafblind families where their member is not able to be as high functioning as my sister due to their particular illness and struggles that physically limit them. Getting involved with CDBA Ontario was our family’s way of both garnering further support for Alecia (a community of people who are deafblind as well as the auxiliary support CDBA Ontario has to offer) but also for my family to give support back to other families who have a deafblind member.

Through all of this, my sister Alecia continues to be an inspiration today. She never complains, never thinks the world owes her anything and continues to find joy every day in everything. Just yesterday, she learned how to make naan bread after “watching” my father make the Indian flat bread last weekend. Over text, I teased her (she has a GIANT phone with GIANT characters on it) -- “Hey Cow” (my nickname for her -- long story, don’t judge me) -- “I heard you made bread! How you do that if you can’t see the recipe??”  Knowing I’m trying to needle her in an older brother teasing kind of way, she just ignores me and tells me how great it turned out, communicating carefully over text, one character at a time; probably the same way she read the recipe out of the book. She has the patience of Job.

Growing up with Alecia wasn’t a chore in our family, but a blessing. Don’t get me wrong, we had family arguments and sibling fights -- but I wager no more than any other family. What makes Alecia special in this regard is her continuing daily pursuit of happiness, often displaying more enjoyment in the day-to-day things in life than any of us with our full senses. She’s been a constant reminder to me to do the same -- enjoy life and our health and the family we have, to love one another. What a powerful message she’s been teaching me and everyone she meets over the years.  Thank you Alecia!

Sheldon Purkiss
Sheldon Purkiss is a father, artist (graphic and traditional), health and juice nut who loves technology. He is currently running day-to-day operations and support for a Canadian dental software company, LiveDDM. Twitter & Instagram - @ShelAlbert