Reflection

Deborah Barrett
It’s the beginning of a long journey when you recognize that something about your child is very different. It’s a shock to hear the diagnosis of autism. It’s so challenging to make sure your child has all the advantages and opportunities he or she deserves. It’s beyond challenging to understand and live with different ways of perceiving, to find ways of coping that work for your child, your family, your community, yourself. And it’s an uphill slog to make sure your adult child has a good life.

You find yourself doing things you never wanted to do and never thought you could do. You find yourself reading about topics that never interested you before. You find yourself educating, advocating, speaking, organizing, creating, leading. You find yourself growing. You discover there’s more to yourself than you’d ever imagined.

And somewhere on the journey, you realize that autism isn’t a scourge – it’s a blessing.

Parenting always asks you to dig deep, to find things in yourself you didn’t know existed. It asks you to figure out how to be there for your child, whether young or old. Autism asks the same. For some of us, autism asks us to participate in the community; it asks us to co-create the future. It asks us to parent more broadly, to help the community understand and develop better options for our loved ones on the spectrum.

Over the past four years, I have had the honour to be the president of Autism Alberta. It’s been huge fun to re-create the website, develop a logo, encourage social media and, with my colleague Roman Sokolowski, establish and edit Autism Around Alberta.

But what I will take away with me, as I step down at this year’s AGM, is the love, the passion, the energy and the vision of our members and of the people who have served on Autism Alberta’s board of directors. Their thoughtful work has opened doors in communities across the province. Throughout the province our members have made connections and commitments that have resulted in real changes in the autism landscape. From the Autism Alberta Alliance, to the Autism Lifespan Clinic, to the Autism Ambassadors Replication Project, to upcoming changes in AISH, to researching Who Will Take Care of Our Kids, Autism Alberta’s directors have put heart and soul into creating a better world for our children with autism and the families that love them.

What I will continue to cherish is the people who have volunteered their time, energy and skills because they desire the kind of good life people on the spectrum deserve. The people who have served on Autism Alberta’s board of directors over these years, and those who have worked in the various communities, are blessings autism has brought to my life. To each one of you, I am truly grateful!

Back to School!

Erika Rowden
At the end of this month, we are starting Grade 3! Every year I learn more about how to prepare Conor, myself and his school for the new school year. I’ve picked up lots of great tips and advice from friends along the way, too. So, here are some of the things that I am doing to prepare for next week:
  • Talk about going back. I started doing this two weeks before the start of school just to prepare him. We marked the date very clearly on his calendar!
  • Start doing a little bit of schoolwork. Conor loves reading, so we have been doing that all summer. Writing is a very different story, though! We have a ‘holiday journal’ where he can practice by writing just a few sentences about his day. I have also been getting him to practice typing and learning where letters are on a keyboard by texting friends to invite them to play.
  • Go to the school playground. We are going to ‘research’ some recess games that he can play with friends.
  • This year Conor will take the school bus with his younger brother, and to help him prepare, he attended the First Rider program. Several school districts, including our own, have launched this program to explain the rules of travelling on the bus. It was so good for him to attend, and I now feel more at ease!
  • Go back-to-school shopping. I am always trying to work on life skills with Conor, and this year I am taking him clothes and shoe shopping to give him a say in what he chooses to wear. I pick our places to go carefully. The mall is way too overwhelming, so we will go to some local stores which are smaller and have a much calmer environment. We are lucky that his school uses online ordering for school supplies, so I don’t have to worry about that!
  • Prepare his ‘all about me’ folder. We meet with his teacher a few days before school starts, and I have found this to be so helpful in settling those back to school worries. He gets to see his new room, choose his seat and get to know his teacher. Then all he has to think about is who will be in his class. He finally gets to meet his classmates on the Meet The Teacher night, and on the first day back he does not have to cope with all of these other concerns. We break this process down into steps, which works really well for us.
  • Talk about lunches and snacks. I want him to tell me what he wants to bring so he will eat at school! This means spending time looking on Pinterest and going to the grocery store.
Once we are back in school I am going to give him time to settle in before the extracurricular activities start. I have made the mistake of starting these and filling up his schedule right at the beginning of the school year, before he has even had time to settle in. I now try to schedule activities towards the beginning of the week, because by Thursday he is really getting tired and needs all his coping skills to make it to the weekend. After a very tiring week, I try to make the weekend as low-key as possible. I don’t schedule any activities for him – just fun things with plenty of downtime.
 
I’m hoping that back to school goes well for everyone else, too!

A Busy Summer for Autism RMWB

Tina Delainey
It’s been a great summer – our team has been busy putting on a lot of activities! All of our members put in a lot time setting up and running events this summer, and we want to give a big, big thanks to everyone who helped!
Adults on the Autism Spectrum were invited to join us for a Pizza Date on June 10th at the Autism RMWB office. It was a great opportunity for the Society to gather ideas for new programs and activities geared to the adults in our community. We had a wonderful time with everyone who could come, and we got to enjoy live entertainment from a local artist, and, of course, great pizza!
 

Home Hardware donated all the supplies needed for a hot dog stand, and our stand helped us raise more than $1000 over one weekend!

We also had a fundraiser from our local M&M Meat Shop. They generously donated 15% from all products sold!

Without local business supports, a lot of our events won’t happen. Thank you to all of our sponsors in the local business community!

Camp Kids First ran for three weeks in July and was a huge success. This year Educare Early Intervention donated the use of their classrooms and Sensory room as our ‘base camp’. Every day the children enjoyed field trips: fire hall, rock climbing, swimming, Heritage Shipyard, and Dunvegan Gardens, to name just a few! We are thankful to all community partners who helped make our camp a success this year!

For August 12th and 30th we are at the Urban Market, where we sell our sensory store items. It’s a great way to meet a lot of new people in the community and let them know what our Society has to offer.

YMM (Your McMurray Magazine) writer Carol Christian put together a really nice article about our Society and Kirsti Mardell, who is one of our members. It’s a good read, and you can find it here.

In the upcoming months we will be organizing:
  • Support 4 Moms Society monthly support meetings
  • A bottle drive on September 17
  • On September 22-23, a hot dog and hamburger stand sponsored by Superstore
  • An October Halloween Paint Night
  • A movie night with kids
For more event and fundraising details, or if you would like more info, please contact us or visit our Facebook page at https://www.facebook.com/AutismRMWB/
 
We are looking forward to the new school year!

All the best from Autism Society of the RMWB,

Autism Society of the Regional Municipality of Wood Buffalo

780-742-4424

AutismSupport@AutismRMWB.org

Who Will Take Care of Our Kids (When We No Longer Can)? – Part 4

Carolyn Dudley & Shino Nakane

In last month’s instalment of Who Will Take Care of Our Kids, we talked about housing supports that can help create better lives for adults with autism. In this month’s excerpt, we’ll be sharing other types of supports that have shown promising results.

Networks of Support
The concept of creating a natural support network surrounding the individual with disability was also noted by stakeholders who have been working in this field for many years. The concept of this network is that it be comprised of family and friends or individuals that enter into the network freely. This idea has been led by the Planned Lifetime Advocacy Network (PLAN) in Canada. PLAN affiliates exist across the country and offer services to pan-disability families. Different affiliates in different provinces appear to take slightly different approaches, such as offering a paid lifetime membership for the family, having a paid core coordinator who oversees the creation of the network, or with no fees charged. PLAN has also authored a book entitled “Safe and Secure” that outlines 6 steps to creating a good life for people with disabilities.

A variation on this network model was found in British Columbia, where families have the option to create their own microboards to support their child or adult with a disability. A microboard is a formal non-profit society made up of committed family and friends who help an individual plan a life course, and can become an entity through which paid services and supports are provided. The main difference between these two models is that a microboard is incorporated as a nonprofit society. In British Columbia, PLAN and Vela Microboards work together, and some families belong to both.
Government Supports
Government services in Alberta offer supports via a public guardian. The quality of support provided will be somewhat dependent on the guardian appointed. The public guardian appoints a legal guardian in the absence of family, including extended family. The Office of the Public Guardian seeks the least intrusive or most sensitive solution for the adult in question, and will initially seek out the extended family to take up the needed support. If an appropriate guardian is not available or found, a public guardian will then be appointed to oversee the needed support. As people with disabilities often require immediate aid, a public guardian may play a critical role in assisting with important decision-making issues. This may be necessary to maintain current standards of life in cases that require expertise in the administration of the estate. However, unlike a family member, an appointed guardian will likely not know about all of the challenges facing the individual with disability, especially if the individual has resided with their primary caregiver and was never exposed to external supports.
Supports for Family
In Calgary, the Sinneave Family Foundation offers the ‘Launch into Life’ program for families entering into transition at age 18. This in-person seminar offers several evenings of information on transition from adolescence to adulthood, as well as information on housing, the RDSP and the concept of a network. There are numerous other programs and support groups for families in Alberta that provide counseling, stress reduction and education, but most families are either not aware of these resources or do not have the time to participate in these programs. One example is that of parental stress for lifelong care of those with ASD. Extensive research demonstrates that the tremendous stress and lifelong strain families are subject to produces high levels of depression, anxiety and marital distress, but there is no reliable mechanism in place to help families monitor and address these issues with the needed support.
 

A Detailed Support Plan
Many stakeholders suggested that families need to have something on file that summarizes every aspect of their loved one’s life, including the medications they require, contact lists that include medical and support workers, sensory diets, behavioural triggers, interests, and many other unique needs that allow for a good quality of life. When parents are in need of a break or unable to support their adult, the designated coordinator or support person could access the “manual” with details of the individual. A manual or an app that enables families to simply “fill in the blanks” to create a synopsis of their child or adult to pass on to future caregivers would assist in communicating key information and the unique needs of each individual. This would be especially helpful for those who are non-verbal, low-IQ, or who otherwise have difficulty communicating their needs.

A manual similar to this, entitled Aging with a Developmental Disability – A Transition Guide for Caregivers, was written by the Ontario Partnership on Aging and Developmental Disabilities. The manual is available online and offers checklists on topics such as the role of the family and advance care planning.
 
There may be other agencies that have developed templates for recording important details. What families need, even more than a manual, is to know where to find these resources. Ideally, they should also be able to receive help from a key coordinator to complete and update this information.

Next month, we’ll be talking more about the gaps that exist in the supports that are currently available for adults with ASD.

We Want to Hear From You!

We are looking to publish stories, event notices or news items from all parts of the province. If you’d like to have your items included in the September 2017 issue of Autism Around Alberta, please send your submissions to AAA@autismalberta.ca by the deadline of September 15.

Autism Canada is Looking at Seniors and Aging Through A
Global Lens

This fall, Autism Canada will co-host a Later Life ASD Think Tank in partnership with the Pacific Autism Family Network and the Autism Research Institute. This invitation-only event will bring together key stakeholders to examine the medical, neurological, mental health and quality-of-life issues facing aging adults on the autism spectrum.

The objective is to take a multidisciplinary and inter-professional approach to identifying concerns and strategizing solutions to begin building a framework for best practices for our aging population. In order to garner the best and most innovative information possible, invitations have been extended to clinicians, researchers and self-advocates from the Netherlands, Australia, Great Britain, the United States and Canada. The invitees are some of the most knowledgeable individuals in the world regarding the lifespan needs of autistic adults.

This is a unique gathering of the minds, and Autism Canada is proud to take a leading role in making this happen. Materials emerging from this two-day Think Tank will be published in early 2018, and we will use them to influence research, service capacity and government policy at all levels.

We all experience mental, physical and emotional changes as we age. It is imperative for professionals, communities and families to be prepared for those later years to ensure autistic seniors have optimal quality of life.

Did you know Autism Canada…
  • Has a free weekly e-newsletter that covers autism news, research, events and inspiring quotes.
  • Is very active on Facebook, Twitter, Instagram and LinkedIn.
  • Has over 90 presentations online on Vimeo and YouTube by self-advocates, clinicians, professionals and researchers.
  • Has an online screening tool for toddlers, children, teenagers and adults.
  • Has a National Event Calendar where autism organizations across Canada post their conferences, workshops, symposiums and training opportunities.
  • Has the most comprehensive online autism service directory – Autism Junction.
Learn more at www.autismcanada.org

Sweat for Autism

Let’s get fit, feel great and fundraise for the cause!

Join us for our Sweat for Autism, a marathon-style fitness fundraiser that will be held on August 27, 2017 at the No More Excuses fitness studio (8111 43 St NW, Edmonton), with events running from 8:30 am until 5:30 pm. Along with fitness challenges, there will also be BBQ from 11:30 am to 2:00 pm, massages available on-site for participants, and prizes for the top three fundraisers (1st prize valued at $500+, 2nd prize valued at $300+, and 3rd prize valued at $200+). Keynote speakers and VIP introductions will take place during the BBQ.

Sweat for Autism aims to raise $10,000 for the ongoing funding of health and wellness programs offered by Autism Edmonton.

By participating in Sweat for Autism, you will help autistic people and their families access health and wellness programming. The need for such programs is critical in our community.

According to recent estimates, 1 in 68 children has been identified with Autism Spectrum Disorder (ASD). In the greater Edmonton area, it’s estimated that over 18,000 families are directly affected by autism. More than a third of autistic children, teens and adults live with obesity, more than twice the incidence in the non-ASD population. One of the biggest challenges for ASD individuals and their families is access to health and wellness programs. Furthermore, caregivers lack access to programming, technical skills and supports needed to help their family members meet their health and wellness needs.

With this fundraising effort, Autism Edmonton and No More Excuses are hoping to continue their partnership and expand programming efforts to serve the needs of even more families in our community.

Interested? Join the challenge now! Hurry up – the number of tickets available is limited!


Registration details can be found at autismedmonton.org/sweat-autism
About Autism Edmonton:

For more than 45 years, Autism Edmonton has been providing services and support to autistic people and their families. Since that time, it has become the "go-to" source that connects families, individuals and professionals with autism-related resources. Autism Edmonton helps people navigate their options for services, find vital information, and develop skills and peer support through facilitated activity and discussion groups.
 

About No More Excuses:

Voted the Best Fitness Studio in Edmonton by both Vue Magazine and Edmonton Journal (2014-16), No More Excuses lives the philosophy of giving back to the community. To date, it has raised over $230,000 for community charity projects! The majority of these funds support the health and wellness of children. With such a strong focus on social inclusion, No More Excuses was the perfect host studio for the Sweat for Autism event.

The Thief

Cynthia Robinson
Continued from last month

In June of 2014, my beautiful daughter Alex and I were abruptly introduced to psychosis. Out of nowhere, screaming voices relentlessly inundated her with frightening thoughts. Her uninvited guests told her that “today is the day you are going to die” and gave her instructions to ”get out of the house” or “go up” in elevators. She would get lost in buildings or leave the house in her pajamas. She developed crippling anxieties which caused her to bolt on walks, in parking lots, jump into oncoming traffic, or try to suddenly exit a moving car. The voices were coming from inside the walls, out of dresser drawers, and from behind the clothes in the closet. We would have to terminate trips to her favorite places because her anxiety would explode two blocks away and she would beg to return home. Her world closed in tight and hard. It was treacherous to transport her, and she could not keep the jobs she fought so hard to get. She became unpredictable, and she lost her treasured independence when we had to watch her every moment of the day. She lost enjoyment of activities because her thoughts became too fragmented to focus. Eventually she could no longer communicate and spoke in “word salad” – a constant stream of unrelated and repetitive words strung together in an endless sentence. The psychosis, the Thief, stole her life, shattered her future and extinguished her connection with everything she loved.
 

Trying to get treatment for Alex was torture. When psychosis arrived, we were advised to get her to a hospital within four hours, and were sent to a hospital emergency room with a “short” wait time. After many hours, Alex was having tremendous difficulty waiting, and kept spontaneously exiting. We gave up waiting around 1:00am. After that, we saw Alex’s own doctor. He tried to prescribe antipsychotic medications, but she reacted adversely, and he dropped the attempt. He told me to “take her home and keep her safe, even if you have to nail the windows shut.” I could not accept that there was nothing we could do. I called in support staff to accompany Alex and me to the hospital for a second attempt at the emergency room.

This time, after nine hours and a million walks with her support staff, Alex was seen by the resident psychiatrist. She agreed that Alex should be admitted, but thought that their locked ward was too harsh for a person with developmental disabilities. Instead, she recommended trying to find an outside disability psychiatrist. I eventually located one, 2 ½ months after the onset of psychosis. The psychiatrist agreed that Alex needed to be hospitalized, as it was dangerous to treat an epileptic with a history of status seizures at home, and antipsychotic medications are known to sometimes cause seizures.

However, it is not easy to get a developmentally delayed person into a mental hospital. Current psychiatric admission policies are controlled by a Regional “Bed Hub”. The criterion for admission is being a danger to yourself or others, and Alex did not meet that criterion. However, we eventually found a hospital willing to work with us on a controlled admission. The idea was to get Alex in and safely on medications. That fell through when the Regional “Bed Hub” said that no, Alex cannot enter hospital that way.

Finally, in May of 2015, almost 11 months after the onset of psychosis, we discovered how to gain hospital entry by not following instructions. How so? She spent 2 ½ months in the locked ward for persons with drug-induced psychosis, because the waiting list to get into an appropriate ward was two years. An autistic and psychotic person needs a controlled, low-stimulation environment, and this ward was the complete opposite of that. There is no gentle way to admit a developmentally delayed person to a psychiatric hospital in Edmonton. Alex was funneled through a triage ward along with all the patients who gained entry by being a danger to themselves or others. She was completely traumatized by this entry, and it affected her deeply. She slept with her coat, purse and shoes on for years afterward just because the hospital stripped them from her in triage. In the end, Alex came home saturated with drugs and in worse shape than when she went in. But now she was both dangerously incapacitated and still psychotic.

After multiple unsuccessful drug trials in and out of hospital, it was determined that she could not respond to a treatment safe enough to administer at home. The only thing left was for her to make friends with The Thief and for us to try to keep her alive somehow.

Continued next month

Coping with Stress: A Web-Based Mindfulness Group for Parents of Adults with ASD

Research demonstrates that mindfulness has been shown to increase well-being and reduce psychological distress. Mindfulness can be particularly helpful for parents when stressful events cannot be immediately resolved or addressed. We have been researching how to support parents of adults with an autism spectrum disorder (ASD). As part of this research, we are holding a free web-based mindfulness parent group . This is a unique opportunity to learn and practice mindfulness with other parents in the comfort of your own home.

Groups will run for 6 weeks on Tuesdays.
Time: 1-2:30pm Eastern Standard Time
Dates: September 26th to October 31st

You will be able to participate in the group virtually using your home computer and a telephone line that connects you with the group facilitators and other parents.

If this is something you might be interested in learning more about, please click here:
https://www.surveymonkey.com/r/MindfulnessParentGroups
Alternatively, you may contact Megan at: megan.abouchacra@camh.ca or at 416-535-8501 ext. 37832

School’s Out Forever… What Do We Now?
Navigating Life After Graduation for Those With ASD

Maureen Bennie

From the Autism Awareness Centre Inc. Blog:

Once the last few weeks of summer roll around, parents start thinking about the transition to back to school. If your child has graduated, the road ahead can feel daunting without the daily structure of school. Finishing school is a big life transition. It can be difficult for those with ASD to jump right into post-secondary education or employment once school finishes. Some individuals with autism may not be able to work or pursue further education due to the severity of their disability. Others may be able to continue their education or find employment but need time to acquire additional skills.

With year-long waiting lists the norm, you may be your child’s best resource
 
My two children with autism, ages 18 and 20, both graduated in June. I have found this transition period overwhelming, particularly because there are no agencies where I live accepting anyone in their programs; all agencies are full with years’ long waiting lists. Out of necessity, I’ve had to come up with a plan to make each child’s day meaningful and interesting for them. It was important to have their input and hear their ideas in order to ensure the choices being offered were right for them.
 
What makes a good “adult” life?
 
I’ve had to think about what a good adult life should include, and came up with these parameters:
  • a comfortable home
  • good health
  • meaningful relationships
  • being safe in the community
  • working at something enjoyable
  • participating in leisure activities
  • feeling a sense of security about the future
This is the foundation and framework for exploring the options for adulthood. I’ve kept these things in mind as I do my research and planning. While all areas of adult life need to be addressed, they don’t all need to be explored at the same time. This transition is also a process that needs time to gather the necessary information, services and supports.
 
Here are 10 ideas on how to help your child with autism transition to adult life after graduation
  1. Make a list of your child’s interests. Think about what could be related to these interests in terms of activities. For example, my daughter is interested in working with cats so once a week, she goes to a Cat Cafe to see what caring for cats is all about. We got her a cat two years ago to help her build cat care skills. She also attends local cat shows to learn about breeds.
  2. Find a physical activity. Exercise is important for lowering anxiety and improving health. Visit your local recreational center to see what’s on offer. Community centers often have yoga or group fitness classes at a nominal cost. Our children enjoy swimming, bowling and biking and they do those activities weekly. Both kids want to learn how to golf.
  3. Join a club or group. Clubs are a great way to meet other people who share a similar interest. There are book clubs, gaming groups, bird watchers, sports clubs, bowling leagues, movie clubs – the list is endless. They also offer opportunities for socializing.
  4. Volunteer. Volunteering is a great way to build employment skills and can lead to a paying job. My children have been volunteering at a farmers’ market for 6 years which has been a great addition to application forms.
  5. Join an adult support group. Other parents going through the transition process can be great sources of information. Sometimes support groups have guest speakers from local agencies. It’s also a great forum to ask questions.
  6. Explore arts and culture. Every city or town has special events that could help to expand interests. Our son attends free music concerts, participates in drumming once a week, and has a pass to a museum since exhibits are always changing. Our daughter is interested in dance and wants to take an art class.
  7. Visit your local library. Libraries offer much more than just books these days. They have clubs, lectures, show films, and offer classes. The best thing is that libraries are free. I’ve been bowled over by what is on offer.
  8. Consider continuing education courses. High schools and other institutions offer courses for the community. These can be just for fun or teach a new skill like cooking or photography. These can be a good stepping stone to a post-secondary institution by providing course experience in an adult setting.
  9. Allot time for independent skill development. We’ll be focusing on using public transit to get to activities this fall. Our daughter wants to start baking so we’ll ask her support worker to dedicate time to cooking and shopping for ingredients. Housekeeping skills, grocery shopping, going to the doctor, and using self-checkouts are examples of what could be taught.
  10. Attend open houses or information sessions at local agencies/organizations. Open sessions are great ways to learn more about what an organization offers. You can also investigate their resource area as there are often brochures about other programs free to take.
The first couple of years out of school are ones of trial and error, discovering what works and what doesn’t. Take one step at a time and don’t worry if everything doesn’t fall into place right away. I have already been working for months on our plan, years in some areas. The important thing is to take it slow, reflect on what is happening, and be prepared to make adjustments as the need arises.

For further help in planning the transition from school to adulthood, have a look at these resources: