Weekend Warrior – Keeping Kids with ASD Busy

Keeping children with Autism Spectrum Disorder occupied in meaningful and productive ways on weekends is not always easy.  The ‘automatic babysitters’ (iPADs, Nintendo DS, XBOX, tablets, iPHONE, etc.) become highly over-used and can contribute to missed opportunities for face-to-face interaction and communication.  A common question I hear from parents is: “how do I keep my child busy when I have so many errands to run and tasks to complete before Monday rolls around?”  The unstructured ‘down’ time is the hardest time for our children because they require structure, prompting and coaching to participate in many non-technological activities. So what’s the solution?

Firstly, developing a VISUAL routine for the weekend makes the hours predictable and less anxiety-provoking. A child with ASD will benefit from knowing what is expected for the duration of the weekend.  Now that’s not to say that the weekend must be so rigidly structured that there isn’t a minute of ‘free-time’ but carving out some form of routine with clearly defined blocks of ‘free-time’ will promote organization in your child’s brain.  Our children struggle with thinking into the future.  Executive functioning is our brain’s ability to coordinate a mass of cognitive functions (planning, sequencing, organizing, predicting what tools are necessary for a given job, anticipating problems that may arise in a given task or situation, thinking ahead) and individuals with ASD have difficulty with this skill.  The inability to plan for oneself can lead to immediate boredom, anxiety, random impulsive acts which can get a child into ‘trouble’, increased self-stimulatory behavior to fill the time and possibly an increase in attention-seeking behaviors.  Creating a visual routine using what the child best understands (photographs, symbols or words) will provide a sense of ‘relief’ to the child who struggles to create their own agenda.  It also helps the child to prepare for the sensory bombardment that may occur during specific activities (vacuuming, family gatherings, outings to the store etc.).   Some families report that the more information they provide in advance CREATES anxiety in their child.  In this case, I would encourage the family to become detectives in determining why the activity is so overwhelming for the child (is it the noise, lighting, temperature, presence of a feared object, previous negative responses to a similar situation) or is it related to cognitive rigidity and the child’s natural disposition to dislike change or transitions?

Secondly, create a few bins of activities using plastic totes (being mindful of your child’s age and stage of development for safety reasons).  Fill and label each tote with 2 different activities that may spark your child’s interest. On the visual schedule you can incorporate “Mystery Box Time” and have your child pull a number out of a hat which corresponds to the Tote the child gets access to for a specified period of time.

For example:

TOTE #1:  Drawing, Word-finding, Coloring Box – filled with markers, pencil crayons, your child’s favorite pen, paper, dollar-store coloring books or crossword puzzles, word-finding booklets, sudoku puzzles, blank paper, colored paper, coiled booklets with lined paper, a book on how to draw, etc.

TOTE #2:  Building Box – filled with individually packaged Ziplock bags of lego, containers of plastercine or playdoh, sample pictures of items that can be built with these supplies, construction paper, glue, kid-friendly scissors (if appropriate), Oregami supplies, wooden popsicle sticks, a deck of cards to build a card house, a box of Dominoes to create a path of Dominoes to tip over etc.  Providing instructions for each item will help the child understand how to use the supplies.

TOTE #3:  Bubble Box – filled with bubbles, bubble wands, empty containers and a small container of dishsoap with instructions on how to make homemade bubbles, a few sticks of chewing gum, a towel, a washcloth, a laminated drawing of a talking bubble that can be written on with dry-erase marker, a dry-erase marker or water-based washable marker.

TOTE #5 – Fun Facts & Laugh Box – filled with various children’s encyclopedias of various topics (architecture, dinosaurs, insects, birds, animals, history, geography, weird and funny facts).  This can also be a place to put “knock-knock” jokes, kid-friendly jokes booklets, social stories or books that explain topics of interest to your child.

TOTE #6 – Sensory Toolbox – filled with fidget tools (a paper clip, Mack-Tack, pen lid, dice, small square swatches of various fabrics, a spring from a pen, short piece of string, a short piece of ribbon, a felt pipe-cleaner, a cotton ball, a gel-filled ball, squishy stress balls), noiseless whistles, scented lip balm, chewing gum, a relaxation CD or soothing music downloaded on to an MP3 player or ipod, eye mask, scented bean bags, a Slinky, ear plugs, noise-reduction headphones, a lava lamp, glow-in-the-dark bracelets or sticks, bubbles, a massage roller, a foot pumice stone etc.  There are many things that can be used in a sensory toolbox.

TOTE #7 – Photograpy Box – filled with pictures or photo albums of your child’s infancy and time throughout the years, photographs of family members over time, a sorting system to categorize the pictures such as “ME” vs. “Me and my parents” etc., a camera (if your child is able to use one safely), a list of items to find around the house to take pictures (a scavenger hunt for picture-taking).

Lastly, in addition to creating Mystery Boxes, it will be beneficial to block a certain amount of time in the visual routine where the individual can participate in some physical activity (for sensory regulation) with either the parents or a trusted adult (treadmill, walking outdoors, dancing to music, jumping on a mini-trampoline, stationary bike, lifting weights, raking leaves, shovelling snow, building a snowman, vacuuming, sweeping, Wii Just Dance, bowling, swimming, washing the windows outside).  Whatever you can motivate your child to join you in ! Remember to use a “First… Then…” approach to introducing the schedule of activities with the ‘Then’ activity being the reward.

If your child is developmentally not ready to tackle any amount of unsupervised time, seek further occupational therapy assessment in determining how to best promote your child’s participation and ongoing learning.  Advocate for respite through various organizations (Children’s disABILITY Services, Family Dynamics, CFS etc.).   Being realistic about what goals you can achieve during a weekend while tending to the needs of your child.  Sometimes we place very lofty expectations on ourselves and this can increase our stress levels and feelings of inadequacy.  Be kind to yourself. It takes a village to raise a child.

If you have any further questions about supporting your child with ASD through the weekend, please feel free to call (204) 415-7656. I would be happy to assist you in determining your child’s needs.

Back to School Success

Many parents of individuals with Autism Spectrum Disorder look forward to September when they can get back in to some sense of ‘routine.’

Finding adequate supports over the summer is a common challenge.  Keeping children with ASD ‘productively’ busy can be a real struggle for families.  September is a time for new beginnings which often includes: new teachers, new classrooms, new peers, new educational assistants and often new schools.  This may even be a time for new rules, new expectations and new challenges.  Despite the transition, most parents welcome the support of the school staff in engaging the child in new and innovative ways.

September is a time to enter into your child’s school with an open mind.

September is a time to set up new expectations with your child (particularly VISUAL rules) that may not have ‘gone over well’ last school year.

September is a time to facilitate that little bit of growth and independence in your child (for example: teaching your child how to participate in making his or her lunch for school).

September is a time to let go of last school year’s frustrations, annoyances, tears, irritations and fears and start with a fresh perspective.

September is a time to build relationships with those who support your child.

September is a time for parents to have some time to enjoy an uninterrupted cup of hot coffee or tea.

September is a time to be proactive and contact your child’s school to set up a meeting and get the year rolling in a positive way.

We all know that September brings with it a new set of parenting challenges because it is yet another transition from ‘free-time’ to ‘work-time.’ Understand that ‘newness’ is anxiety-provoking for your child and using transition objects (a favorite toy or snack) may be helpful to facilitate your child’s steps out of the house.

Encourage your child to share something special from the summer months with his or her peers, in whatever way he or she is comfortable.

Be kind to yourself, breathe deeply and try to be patient in September while the schools sort out how they can best achieve goals collaboratively.

Congratulations on making it through another summer! Best wishes for this school year!

 

Resilient Parenting – The grass doesn’t have to be greener on the other side

Some of the most challenging moments raising children with Autism occur in the everyday moments of transition from one activity to another, when sudden changes occur to a previously determined and expected routine or when sensory overload gets the better of the child (or parent).  How do these parents maintain strength to deal with the daily struggles? How do these parents recover from explosive situations and move forward ?  How can parents improve their own mental health?

Research shows that out of all of the childhood illnesses and disorders, Autism Spectrum Disorder causes the most parent stress and burnout.  Why? Because of the scattered developmental profile and regressions that occur in individuals with ASD.  It is common for children with ASD to slide forward and backward on a continuum of developmental abilities. The amount of repetition it takes to teach new skills can be exhausting.   Somehow, parents continue to forge ahead, cope, set new goals and persevere.  But how?

In my experience living and working in the field of ASD, I see common threads among parents who seem to cope better than others and I would like to take this moment to share these insights.

  •  Using Humor – Laughter really is the best medicine.  Laughing releases ‘feel good’ endorphins in the body and helps to reduce feelings of stress.  Look for humor in otherwise stressful situations.  Perception and interpretation are keys here.  If you interpret a situation as negative, chances are you will feel bad.  If you can find the ‘silver lining’ in situations it will help to diffuse the heavy emotions that are commonly experienced by parents with children with ASD.
  •  Patience – Developing patience becomes an absolute NECESSITY when raising a child with ASD.  Parents typically discover over time that an enormous amount of patience is required in order to maintain a sense of sanity.  How does a parent learn how to be patient?   (1) Change expectations about what is to be accomplished,  (2) Set realistic goals daily,  (3) Get organized and create a system of how to manage responsibilities,  (4) Avoid self-criticism and negative self-talk when things don’t go as planned, (5) Be flexible when all else fails.
  •  Depersonalization – Now I’m not referring to derealization or separating oneself from reality to exist in some kind of delusional state of mind.  What I am referring to here is that parents who seem to cope better tend to be the ones who understand and accept that their child’s behavior is not a direct expression of hatred towards the parent.  These parents don’t take their children’s behaviors ‘personally.’  These parents are able to reflect on the child’s developmental level, current environmental challenges in any given situation and can interpret the child’s challenging behavior as a difficulty that the child is having within him or herself, not an emotional expression of anger toward the parent(s).  This allows a parent to maintain composure and calm in difficult moments.  Having the ability to remain calm when a child is in the ‘throws of a full-blown meltdown’ will make the difference entirely on that child’s future behavior in a similar situation.
  •  Supports – This can be further subdivided into Family, Friendships, Work Relationships, Respite and Professional Support. (1) Family – a complicated dynamic for most people.  Not everyone has family support but if you do, try to utilize it.  (2)  Friends – rely on friends to debrief about your day. Plan to go out and have fun.  Many parents find that older friendships prior to having children may fade out simply because of the difficulties in integrating the child with ASD into new environments without struggling with behaviors.  These behaviors are not always understood by friends, or simply the fear of a child having a meltdown in a friend’s home is enough of a deterrant for a parent to avoid bringing the child there.  Developing friendships with other parents who share similar experiences can be very enlightening.   (3) Work Relationships – open communication with one’s boss or management to come to an agreement about how to facilitate flexibility in a work schedule (to accommodate for the child’s needs which often pull parents away from work out of necessity). (4)  Respite – Access it, find it, post it on kijiji, talk to your child’s school about hiring an Education Assistant, post ads at the university. Get a break for yourself by getting some childcare in place to allow you to get away for a couple of hours to do something for yourself.  Access local Autism Groups and develop friendships with other parents who understand your life and circumstances because these challenges are often shared experiences. (5) Professional Support – This support may be to assist the parent in improving capacity to cope such as a family physician to discuss mental health needs of the parent or a therapist to provide counseling.  A common theme in accessing support is to develop an ability to clearly communicate you and your child’s needs with those who have the resources to support your family.
  • Living in the Moment – Slowing down and focusing on how to get through this week is a better approach than worrying if your child with attend university, get married or move out of the house. Try not to let your thoughts stray too far into the future. Focus on getting through this week in a positive way.
  • Recognizing You Are Human – Many parents with children with ASD feel overwhelmed with the responsibility of dealing with the various needs of the child as well as the ‘other’ typical daily activities (work, housework, yardwork, etc.).  Being able to shuffle priorities on a daily and sometimes hourly basis is necessary.  Trying to be a superhero in all scenarios will lead you to a path of burnout faster than if you take moments to pause and realize that you are only human.
  • Avoid Comparing Apples to Oranges – Comparing your child to any other child (whether that other child has ASD or not) in terms of developmental milestones or functional abilities may lead to feelings of sadness or frustration. It’s natural to observe and notice differences in your child versus other neurotypical children.  The key is to avoid dwelling on these differences.  No two people with ASD are exactly alike.  Focus on your child’s strengths and how to build upon them.

 

 

Autism Guide for Families with a New Diagnosis

AUTISM GUIDE 2015

Please note that various community resources are continuously expanding and transforming to meet the needs of clients.  This guide was written in 2014 and as such, is a template from which to start your search of information. Some of the content may be outdated so please contact the specific organization for updates.

Thank you,

 

Sincerely,

Tamara Rogers

Parents Working Together to Raise Individuals with ASD

After living with a child or children who have challenges associated with Autism Spectrum Disorder, many parents experience an eye-opening revelation: one or both the parents recognize traits of ASD in either themselves or each other.  We live in a society that craves ‘labeling’ so there is a natural tendency to self-diagnose in order to make sense of what is going on in the family unit.  Whether the parent pursues a formal diagnosis or whether that parent learns vicariously through the child’s journey, one thing is for certain, it adds an element of stress to the parenting relationship.  Acknowledging traits of ASD in oneself, as a parent, can result in a mixture of emotional spill-over in daily parenting tasks and interactions with one’s spouse or partner.  A parent may feel guilt (fearing that he or she caused the ASD in the child), anger (blaming oneself), confusion (what to do now?), relief (knowing how to support one’s child based on personal experiences) and anxiety (what does the future hold?). Many of these emotions are equally existent in neuro-typical parents’ minds but the impact that ASD has on marital/partner relationships can create additional challenges in parenting a child on the autism spectrum.  Statistics regarding divorce are staggering without including the additional challenges of dealing with a neurodevelopmental disorder.  Families with children who have disabilities have an even greater risk of dividing.

The exact cause of ASD remains unknown.  Yes, there are at least 100 genes associated with ASD but the impact that the environment has on an individual  (from the womb to the world) remains a mystery.   Autism is not caused by a particular parenting style or philosophy.  Having a parent with ASD does not necessarily equate to the offspring having ASD.  Although the prevalence of ASD is rising, science has yet to discover the ‘just right’ conditions that facilitate the expression of ASD in any given individual.

Emotional dysregulation, anxiety, misinterpretation of social cues (including gestures, body language, figures of speech) and sensory overload can all be factors that impact on a parent with ASD.  When this is combined with a household wherein a child with ASD is demonstrating explosive aggression, sensory overload, poor frustration tolerance, cognitive rigidity and communication deficits, it would stand to reason that the parenting dynamic would become increasingly more stressful over time.

Finding a sense of balance, feeling productive in parenting roles and learning how to support each other are areas that can be addressed in couples’ therapy by a therapist who understands how to perceive the conflict from both  ‘neuro-typical’ and ASD perspectives.  Therapy to assist parents in deconstructing old patterns and creating new ways of parenting together as a unified team is one of the many interventions provided by On The Spectrum Therapy Services.

 

 

 

 

Autism Rocks

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When one of my sons was 2 years old, he would spend the majority of his time sitting in the sandbox dropping rocks from his tiny hands in such a way that they would bounce off of his stomach and drop to the ground.  He could sit there for what seemed like an eternity watching the pebbles and sand sift through his chubby fingers and drift down to the earth below.  Any chance he got at picking up stones or wood chips, just to let them drop from his fingers, was a chance at pure happiness in his mind.  I watched him carefully trying to figure out what captivated him about this action.  I was dumbfounded, agitated and somewhat embarrassed about this peculiar behavior.  None of the other toddlers in the daycare seemed to play with rocks in such a bizarre manner.

It took a very long time to come to terms with the diagnosis of Autism in my twin sons.  I denied it wholeheartedly in the beginning.  I found myself searching for new pediatricians in hopes that one would tell me “oh, don’t worry, he doesn’t have Autism.”  After consulting two different developmental pediatricians, the answer still came back the same… Autism Spectrum Disorder.  Not knowing what this meant at the time, I was left devastated by this news.  I couldn’t imagine what life would be like with twins who both had neurodevelopmental disorders.  I feared they would never learn to speak and would be stuck in their two-year-old bodies forever.  Thankfully, I was wrong. Very wrong.

My children have taught me more about ASD than any textbook or seminar could ever hope to achieve.  They have shared with me the insights and inner workings of their minds through watching how they interact with the world around them.  It has been fascinating to observe their growth and it has been nothing short of a party every time a milestone has been reached.  They work at least twice as hard as their peers to master skills that seem to come so naturally to others.  Life takes more effort, more time and more patience.  Parenting takes more creativity, problem-solving, trouble-shooting, organization and attention to detail than ever imagined.

The benefits of having children with ASD are enormous.  I know my children extremely well.  I have had to spend the better part of my waking hours supervising, prompting, encouraging, listening, watching, modeling, shaping, reinforcing, and supporting their development.  I have had to be an active participant in every step of every task ever achieved.  Admittedly, some days have felt like “Groundhog Day” but this has taught me patience and perseverance.  Having children with ASD has taught me to slow down and live in the moment.  Rushing is not possible.  It has also given me perspective.  Thinking about the world through a world of sensory upheaval and social chaos would make anyone stop and take a deep breath.  Having children with ASD means that life is not what I expected it to be.  Having children with ASD means that I will carve a new path and set new goals rather than cling to the old “idealistic” goals.   I have learned how to embrace humor.  I have learned to appreciate the moments I get to sit down with a cup of coffee.  I have learned how to pay attention to the environment that surrounds us.  My children have taught me that our world of communication is full of confusion, double-meanings, sarcasm and figures of speech and that body language doesn’t get a parent very far in a candy store.

Children with ASD continue to grow, learn new information, accomplish new skills and mature over time.  They just do it at their own pace.  This came as a great relief to me.  Looking back, my son is nothing close to what I expected of him when I watched him dropping rocks on his round belly…  He is so much more! And I am the lucky one who gets to be by my sons’ sides as they find their way in this world.

If you are struggling to deal with the diagnosis of ASD in your toddler and would like some therapeutic support to help you figure out your first steps on this journey, please call me at 204 415 7656.   I would be happy to help you understand your child from an Autism perspective.