Siblings

Erika Rowden
Conor, my son on the spectrum, has a younger brother named Shea, age 5. I write so much about Conor that this time I wanted to write something about his brother and how autism has impacted him. I dedicate this article to all the amazing siblings out there – you are not only a brother or sister, but also an advocate, therapy assistant, friend, and so much more to our ASD children!
When Shea was born I knew it would take Conor a little time to adjust to having someone else share the spotlight… but I did not think it would take years! This was pre-diagnosis, and knowing what I know now, I totally get it. The change in his world was so huge that he could not deal with it, and he used behaviour to express those feelings. I could not understand how others would always say that their child just loved being an older brother or sister, when mine was totally the opposite!
For the best part of two years I was concerned for Shea’s safety with Conor. Conor was very aggressive towards his little brother, and would often hit him on the head or choke hold him. Once Shea could stand up for himself a little and was more mobile, things slowly improved. I also got to see how very, very different they were in every way. I can totally remember when Shea first smiled; with Conor, I can’t recall. Shea did so many ‘normal’ baby things, but Conor certainly did not!
Conor was diagnosed when Shea was three years old. From that age Shea became familiar with therapy, respite, and sensory tools, to name just a few. He has totally embraced it all, and has always wanted to be a part of Conor’s therapy sessions. He teaches Conor about appropriate play, behaviour and conversation. Shea loves to play, and he brings Conor ‘out of himself’, because he won’t take no for an answer! It has been amazing to watch that bond and friendship grow. He loves to watch Conor’s basketball games, and now Conor is happy to watch him play hockey. They encourage and motivate each other, and Shea is a great role model for Conor.

Shea is very keen to learn more about autism, and has some books that we read together. He has incredible empathy for a 5 year old, and I know this is because of what he has learned from having a sibling with special needs. I know that he will always be there for his brother, and that gives me so much peace of mind, especially now that they are getting older and want to be more independent.
Siblings, I just want to say thank you. You make such a difference in the world of ASD!

January Update from Autism RMWB

Tina Delainey
Hello again from the Autism Society of the RMWB. We have had another really busy few months with all of our events and fundraising!

We once again had amazing sales at our Poinsettia Fundraiser on November 20th! We even had to do a second order for our poinsettias and wreaths. Thank you to everyone who supported us!

School isn’t just a scary place for kids; sometimes it can be overwhelming for parents, too. On November 26th the Autism Society helped to navigate some of the terms, reports and supports that children receive in school. The evening was an informal information session presented by the Society, but led by the parents. They shared ideas, experiences, and tips on advocating for their child in their learning journey. This event was the first of a series of monthly information sessions that the Society is able to host thanks to Autism Speaks Canada Family Services Community Grants.

We also had a great volunteer opportunity at The Christmas Party Fort McMurray. For two nights our volunteers helped sell liquor tickets and 50/50 tickets, clear tables, operate the coat check and seat guests. Without all their hard work we could have not raised over $5000 for our Society!

On December 10th, our Ambassador Kirsti spent the day at the Human Rights Conference for our region. It was a great day to bring together individuals, institutions and social enterprises to re-commit to the principle that all persons are equal in dignity, rights and responsibilities, without regard to race, religious beliefs, colour, gender identity, physical disability, age, ancestry, place of origin, sexual orientation, or anything else.

On December 16th we held our Annual Christmas Party. All the kids loved watching Christmas movies, having a blast in the Bouncy Castles, making arts and crafts, and enjoying all the snacks made by our very helpful volunteers. The best part of the day was when the REAL Santa came to visit everyone!

Sensory Saturdays are back by great demand, hosted by Educare. Once a month, Educare open their sensory room up to parents, who can come and visit with each other while their children enjoy some time in the sensory room.
For the upcoming months we have:
  • Support 4 Moms Society monthly support meetings
  • A February 11th Paint Night Fundraiser
  • March Bingos
  • Charlie and the Chocolate Factory Fundraiser for Easter
  • Dunvegan Gardens Easter Egg Hunt
  • Toonie Swim Day for Autism Awareness Day on April 7th
  • Swedish Rags Fundraiser
  • Hanging Baskets for May
For more event and fundraising details or to learn more about our Society, please contact us or visit our Facebook page at https://www.facebook.com/AutismRMWB/
All the best from Autism Society of the RMWB,
Sincerely,
Autism Society of the Regional Municipality of Wood Buffalo
587-452-9334
AutismSupport@AutismRMWB.org

Yoga and Exercise Can Help Those with ASD Manage Meltdowns and Self Regulation

Maureen Bennie

From the Autism Awareness Centre, Inc. Blog:

For many of us, the New Year brings resolutions that often include exercise and diet goals for renewed health. Regular exercise is essential to your good health, but did you know it can also help a person with autism self-regulate and manage stress? Coach Dave Geslak has created exercise programs for people on the autism spectrum using structure and visual supports. The Exercise Connection program emphasizes these five points:
  1. Body Image
  2. Posture
  3. Motor Coordination
  4. Muscular Fitness
  5. Cardiovascular Fitness
Geslak is also the author of a fitness book called The Autism Fitness Handbook: An Exercise Program to Boost Body Image, Motor Skills, Posture and Confidence in Children and Teens with Autism Spectrum Disorder. Designed to address specific areas of difficulty for children, teens and young adults with autism spectrum disorder (ASD), the 46 exercises in this comprehensive program are proven to improve body image, motor coordination, posture, muscular and cardiovascular fitness. The boost to confidence, relationships and general wellbeing resulting from this will be transformative for individuals with ASD and their families.

1) Recreational sports
Team sports like soccer, baseball, and hockey can have health benefits, afford opportunities for socialization, and, in some cases, may help prevent problem behaviour such as aggression. For those looking for the social aspect, this works particularly well if peers who have been taught to serve as tutors or models are available during the activity. Smaller “team” sports that are more one-on-one (like tennis) can also be good, as there is an opportunity to look for a sport partner who is educated in how to interact positively with those having autism.
2) Yoga
Yoga is not only good for a person’s physical body, it also promotes self-regulation, aids in relaxation, and helps to alleviate stress. There are 5 basic yoga poses that are simple to use and may prevent meltdowns. There is also a YouTube clip called Good Night Yoga, based on a book by the same name with lovely illustrations, which can help settle children for bedtime pose by pose. For more ideas on how to implement yoga, have a look at Asanas for Autism and Special Needs. Peaceful Pathways yoga studio has collected a number of articles about yoga and special needs.
The 5 basic yoga poses for helping to prevent meltdowns in those with ASD
  1. Child’s pose with “Bee Breath”:
    In this posture your child sits on their knees and places their forehead on the floor with their arms stretched out behind them. Good Night Yoga makes this pose even more fun and calming by adding a “bee’s breath”. In order to breathe like a bee your child simply inhales from the floor up to sitting, takes a deep, deep breath, and buzzes like a bee all the way back down to the post on the floor. Children love to buzz like a bee, and the big breaths are perfect for soothing the nervous system.
  2. Cat-Cow Pose:
    In Good Night Yoga, this pose is just the cat part, but the cow is pretty fun too! Normally they are paired together. To do the poses your child should get on their hands and knees, and can start by inhaling into the cat, followed by exhaling and “mooing” into the cow. The deep breathing with gentle spine movement in this pose helps release tension and calm the body.

    Cat: Inhale and arch your back like a cat as high as you can.

    Cow: Exhale and arch your back the other way so that your belly drops towards the mat and you are looking at the ceiling. Let your exhale come out as a loud MOOOOO if you like.

  3. Tree Pose: The concentration required to get into, and hold, this pose is great for quieting the mind. To get into Tree Pose, have your child pick which leg they feel most balanced on. Then they lift the other leg and place it on the thigh at – or above – the knee, as high up as they can. Once they can get their balance – and they might need to use their arms for this – they can then place their hands together as if in prayer, and breathe deeply for as many breaths as they can.

    Tips: This pose can be pretty funny, as most people will flop about a bit at first. It can be fun for a child to see which leg they are stronger and more balanced on – there is usually one side that is easier. If this is too difficult, the child can back up against a wall, and use the wall to support them while they find their balance.
  4. Child’s pose with visualization: Child’s pose can be a very comforting “safe space”. The entire spine is supported on your own legs, and it offers a deep place to relax with a similar “curled up” feeling that many people find soothing when they are overwhelmed. To do this pose, your child simply goes into the face down posture of the child’s pose of the first posture, and stays there breathing deeply. They can place their hands before them on the floor, or behind them.

    Tip: It can be good to take this a step further by having the child visualize something they find soothing. For some children this can be inhaling pink clouds, or floating on clouds. It’s important to find something that YOUR child finds comforting and soothing for this visualization, as some children might find clouds scary or disorienting. Visualization – or meditation- can be a very powerful tool for self-regulation.

Final tips? Have fun, and learn these tools before you need them
Our son does yoga once a week with a private instructor. He is able to use his breathing techniques throughout the week to keep calm, and his strength and flexibility have increased. Yoga has kept him mobile in spite of having advanced arthritis.
If you want to add yoga to your child’s toolbox of self-regulation, it is best to learn the postures in a calm/fun/non-stressful environment, so that when your child needs to use them to self-regulate they are already well practiced. Adding these poses to your night-time ritual can be a great way to not only prepare your child for a calming sleep, but also to link the poses to a calm, relaxed and safe space for your child.

Innovations in Practice 2018

Click the poster below to view the full-size version

Functional Neuroimaging of High-Risk 6-Month-Old Infants Predicts a Diagnosis of Autism at 24 Months of Age

Article Summary by Rachel Pagaling
Studies using neuroimaging are becoming more and more popular as technology advances. Exciting research in the US conducted by Emerson and colleagues examined the early diagnoses of ASD using data from brain scans of six-month-old infants. This study shows that neuroimaging techniques can prove to be effective in demonstrating the early detection of ASD in infants at high family risk of autism. This study also reports the differences in early brain measures between six-month-old infants without ASD and those with ASD.

Emerson and colleagues gathered neuroimaging data showing brain activity figures from MRIs of 59 six-month-old infants who had high family risk for autism (at least one sibling with an ASD diagnosis). Once these children were two years old, their parents completed questionnaires to get information on their child’s social behaviours, attention, language abilities and motor skills. Subsequently, the child’s behavioural test scores, as well as figures taken from brain studies, were entered into a machine-learning algorithm. Based on the combined results, the researchers diagnosed 11 out of the 59 children with autism.

As seen in Figure 1, functional connectivity MRI scans show a difference in functional connections in the infants with ASD (blue dots) compared to the infants without ASD (red dots). Infant classification was correct for 96.6% of 6-month-old high-risk infants, with the two blue dots in the middle representing incorrect classifications. These findings are in agreement with other MRI studies looking at brain activity in children with ASD, studies which report that specific brain structures can give timely information at 6 and 12 months of age and predict an ASD diagnosis before the behavioural characteristics of ASD are present.
These significant findings demonstrate early detection and diagnosis of ASD in six-month-old infants with high familial risk with over 96 percent accuracy. Although there were only 11 kids in the diagnosed group, and the findings must be replicated with a larger sample size, this neuroimaging study contributes immensely to autism research. This is especially true for the early identification of infants with ASD before other symptoms (e.g. behavioural symptoms) develop, which is usually around 24 months of age or later. Furthermore, this study contributes to the advancement of possible research in the future that would look at effective interventions for six-month-old infants at risk for ASD.
The journey and process of diagnosing children with ASD is not easy one, and can result in parents feeling frustrated and confused. However, this study by Emerson and colleagues is a great step in the right direction. Earlier diagnoses can equip parents with information that could help alleviate some of the confusion surrounding having a child with ASD, as well as open up doors for early preventative interventions for ASD.

References:

Emerson, R., Adams, C., Nishino, T., Hazlett, H., Wolff, J., Zwaigenbaum, L., . . . IBIS Network. (2017). Functional neuroimaging of high-risk 6-month-old infants predicts a diagnosis of autism at 24 months of age. Science Translational Medicine, 9(393) doi:10.1126/scitranslmed.aag2882

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 February 2018 issue of Autism Around Alberta, please send your submissions to AAA@autismalberta.ca by the deadline of February 15.

Two Sides to One Story

Carmen Moore
There is only so much that anyone can understand about another person’s situation. You can empathize with a friend, family member, or colleague about their own particular struggles or issues. You can study the parts of the situation intellectually and try to apply logical solutions that have research behind them. You can be a supportive listener, be active in helping them, and can try your best to put yourself in their shoes and step up to help. But you can never truly know how it feels to live their experience, just as they can never truly know how it feels to be you.
This life lesson hit home for me after I spent years and years as a teacher – teaching grades 1 through 9 at different points in time – as well as an inclusive education teacher and school administrator. I would describe myself as caring and incredibly invested in the overall success of the school as a whole, but also in each individual student, and ultimately in their families. Most of my career was in relatively small schools, where there is a real sense of ‘family’ that is built and experienced by most, if not all, students and parents. This was always a positive ,and I felt that people knew that I was genuinely invested in their children’s success.
As an educator, I had a special spot in my heart for any student that struggled in any way: behaviourally, academically, socially, emotionally, etc. I felt like I completely understood what their families were going through, and I tried to support them through whatever challenges they faced. I thought that I had a full grasp of the feelings, effort and worry that these parents were experiencing. They would sometimes allude to the fact that there was no way that I could fully understand, but that they appreciated my efforts and true concern. I won’t lie: this would wound me a bit. The old “you can’t possibly understand because you don’t have kids of your own” would sting, as I felt it was inaccurate and did not take into account the many sleepless nights I had spent trying to plan ways to better support their child.
Until I became a parent.
I hate to be told “I told you so…”, but I can imagine that all of those wonderful parents would have the right to at least think it, even if they would never say it to my face. I could finally realize the true depth of feeling that parents can have for child, especially if they are struggling in any sense. The experience of facing a long-term or serious health concern for your child is not something that another person can fully grasp, no matter how much they do all of the incredibly kind things I mentioned at the top of the article.
This experience of having my own child, along with the struggles that come with it, has completely reframed the way that I approach education, meeting with parents, guiding staff in their classroom practice, communicating with parents, sharing reports, and more. I can see the times when I thought that what I was saying or doing was the most helpful thing to do at the time, but it may not have been. I had the best of intentions, but sometimes I really needed to just ease up a bit, give a bit more time, gently nudge when needed, listen a bit more, or slow down.
I know that I cannot go back, but I can certainly move forward with this new insight and understanding. Although each person’s story and experience is different, and I know that I can never truly understand each person’s specific experiences fully, there are some common threads that I hear through personal friends, colleagues, family members, social media posts, and my own research.
There is an old saying that “you do not know what you do not know”, and this has come to ring true for me. If you are a parent reading this, you know. I firmly believe that with a focus on building both communication and relationships, we can begin to build that common understanding. We may never have the experience of being truly understood, but having this new insight has helped to shape and hone my own practice as a parent and as an educator. A healthy and honest home/school partnership can be one of the most important relationships that affect your children and their own growth. That should remain the focus for all, no matter the side of the story.

Share Your Experiences with the Disability Tax Credit

Autism Canada is proud to be taking a leadership role for all Canadians as it pertains to issues surrounding the Disability Tax Credit, as well as the secondary problem of how this impacts people’s Registered Disability Saving Plans.
On November 30, 2017, Autism Canada held a press conference in Ottawa. At the time of that press conference, we had heard from just over 140 people telling us their Disability Tax Credit application stories. As of today we have 320 stories. In order to effectively advocate for a more equitable and transparent procedures, we need to gather as much information as possible.
It is crucial that we keep hearing from families and autistic individuals about their experiences applying for, or maintaining, their Disability Tax Credit. It is also essential that we hear from professionals who are asked to complete the forms.

Please take time to email Susan today at Susan@autismcanada.org.

Here are some of the media outlets that have covered the story to date:
  • Macleans – http://www.macleans.ca/politics/ottawa/long-term-savings-plans-are-in-jeopardy-for-canadians-with-disabilities/
  • CBC’s “The Current” – http://www.cbc.ca/radio/thecurrent/the-current-for-monday-december-4-2017-1.4428749/canada-revenue-agency-needs-to-be-more-consistent-with-disability-tax-credits-say-advocates-1.4428891
  • CTV – http://www.ctvnews.ca/health/autism-group-calls-on-cra-to-make-applying-for-disability-tax-credit-easier-1.3701665
  • CBC – http://www.cbc.ca/news/canada/prince-edward-island/canada-revenue-agency-battle-pei-mom-daughter-autism-souris-1.4427991


Happy Birthday

Jessica Pigeau
It was my grandmother’s birthday yesterday. I know this because my mother sent a message telling me that it was my grandmother’s birthday. Two hours later, she sent another, more pointed message telling me to wish my grandmother a happy birthday, please. I expect to receive a similar message in April on my father’s birthday, whenever that is.
The notification system on my phone is filled with reminders: deadlines, appointments, and responsibilities. I having an elaborate series of staggered alerts to message my mother, my father, my siblings, my friends. At this moment, four are overdue, but I will sit down this afternoon and compose a few messages. I won’t ask how they are. I won’t talk about how I’ve been. I’ll report to them with interesting news or a clever joke I’ve heard and see what they make of it.
From time to time, my friends and family will tell me their news unprompted, and I will struggle to remember what they’ve already told me. The people who populate their worlds, who I know only from their stories, are dim and irreal to me, like characters in a play I have never seen. There are coworkers I half remember, marriages I have never heard of, and second cousins whose names I struggle to recall. They sometimes ask me about the lives of my other friends, and I find myself unable to answer. I don’t know who they are dating. I don’t know what their parents do. I don’t know if they have work lined up for the summer.
As a teenager, I had a reputation for being cold and indifferent. Even now, I’m considered an unemotional, unsentimental sort. Close friends call me ‘Spock’ as a compliment for my logical, impersonal approach to offering advice. (At least, I think it’s a compliment.)
They’re not wrong. I am unsentimental. I don’t feel a connection to birthdays. I don’t care about anniversaries. I even dislike most holidays — they are disruptive and arbitrary, to my mind. I don’t care for most ritual displays of affection or closeness. I don’t care for cards and presents and performances of gratitude. I don’t like them, and I struggle to understand why other people do.
This not to say that I do not care for the people who give me these things, who wish me a happy birthday and expect that I will do so in return. It is rather that the symbolism of talking to someone on a particular day based on the approximate position of the Earth in relation to the Sun at the time they were born and whatever feelings I have for them are rather divorced in my mind. I know these things are very important to people in my life, so I try to respect and honour them, but I have never had an intuitive understanding of why they care so much about one day out of 365.
I have struggled for most of my life to translate what I feel into a language that others can understand. To show that I care, even when the little rituals intended to signal that affection confuse and bewilder me. With closer friends, I have carved my own ways of demonstrating my regard for them. I have fashioned a thousand “I love yous” out of studying their interests, learning their preferences, remembering all of their little habits and jokes, and listening to their thoughts and troubles without judgement. For all that I struggle to be thoughtful in the way that it is usually conceived, I have tried to be a person with whom others can be their true selves, with whom they can feel understood. I hope that my friends and family know that.
I like to think of cultural ideas of how to be a good friend as a sort of hypothetical model that you can customize to suit your needs. It is my view that relationships are like friendly contracts, where you can go with the standard form or you can negotiate and renegotiate something that better suits the needs and abilities of both parties. If the normal way of showing that you love someone doesn’t work for you, or if the way you express your feelings in a relationship doesn’t match with what books and movies tell you — well, it doesn’t need to. We are allowed to rethink and reshape the models of being society gave us. We are allowed to rewrite the rules of what it means to be a person who cares.