What’s it like to be a sibling of a child with autism – the secret lives of siblings (Part 1)

Me and my brother with autism
When people ask me what it’s like to be a sibling of a brother with autism, I tell them with absolute sincerity of the wonderfully close relationship we’ve always had.

This is Part 1 of our 10-Part blog series about the challenges and experiences of the siblings of kids with a diagnosis. Be sure to check back for future posts in the series.

Read all posts from this series: Part 1 | Part 2 | Part 3 | Part 4 | Part 5 | Part 6 | Part 7 | Part 8 | Part 9 | Part 10

By Jess Urcuyo

When people ask me what it’s like to be a sibling of a brother with autism, I tell them with absolute sincerity of the wonderfully close relationship we’ve always had, that he was my inspiration to become an Occupational Therapist, and that he’s taught me to see the world as full of opportunities and potential instead of setbacks and obstacles.

I don’t tell them about my 13-year-old-self.

My 13-year-old-self didn’t need an alarm clock. She was woken every morning at the same time to the same cassette tape playing the same segment of the same story until the glorious day that tape finally snapped. She was the girl who stood in the street and yelled awareness at the village ‘big kids’ because they teased her brother because of his autism. She was the ‘good’ child, you know, the one who didn’t have any problems. The one who would hold onto secrets of being bullied long after she left school because she thought her family had enough on their plates.

Then one day, she found a book at a thrift store; The Other Child, by Linda Scotson. A book about siblings of kids with exceptionalities. There was a chapter entitled I’d Like to Kick Stuart’s Head In. She blushed from head to toe, and as nonchalantly as she could, she dropped it in her parents’ shopping basket.

I remember that night vividly. I stayed awake long after my bed-time, reading like my life depended on it. That book was a glimpse into a whole new world. A world where it was ok for siblings to experience real feelings and talk about them. It would still be many moons before I’d open up about some of the challenges I’d been through as a result of being a sister of a child with autism, but the delicious taste of that exotic cuisine was on my tongue, and I was hungry.

My Brother is Autistic
It was tough enough just to get my brother’s autism recognized.

In fairness to my parents, they did everything they knew how to, to equalize our family life. But life through the lens of a sibling wasn’t the hot topic on anyone’s agenda back in the ‘90s. It was tough enough just to get my brother’s autism recognized.

Are we any the wiser these days? I’d like to think so. But in the fast pace of life with its endless juggle of priorities, the picks ups and drop offs, the meltdowns and breakdowns, it can be easy to lose sight of the sibling experience. Some siblings might need professional support to help them on their personal journey. For others, a genuine acknowledgement that it’s ok for them to have their own achievements, challenges, and needs can go a long way towards opening up the conversation.

For the record, I’ve never once wanted to ‘kick Stuart’s head in’. But the book still sits on my shelf as a gentle reminder of the liberation that one short sentence once held for me.

Check back tomorrow for Tips to promote well-being in siblings of children with disabilities (Part 2).

How to Prepare for Halloween with Children with Special Needs

how-to-prepare-for-halloween-with-special-needs-children

It’s time again to get ready for Halloween!

For many families this means choosing costumes to wear and candies to distribute to our little “Trick or Treaters.”

With food allergies, food sensitivities and childhood obesity becoming increasing concerns in our society, we are welcoming and encouraging a new Halloween fad. Why not try offering non-food or non-candy treat options to your little ‘trick-or-treaters’ this year?  Here are some suggested ideas:

  • A page of fun stickers
  • Bubbles
  • Bracelets
  • Toy cars
  • Decorative pens
  • Bouncy balls
  • Decorated adhesive bandages
  • Mini pumpkins
  • Whistles
  • Charms
  • Balls of homemade play-dough
  • Reusable twisty straws
  • Hair barrettes
  • If you are crafty, you could decorate items. Maybe, glue some googly eyes to little acorns or twist black pipe cleaners around black pencils to make them look like spiders!

If you, yourself, have a little one who would benefit from non-food treats, you may wish to begin to drop subtle hints to friendly neighbors soon. For example,  ‘Have you heard about the non-food treat option fad? I’m excited to be doing something to keep Halloween fun, while still considering our children’s health. We’re trying to decide if bouncy balls or princess and car bandages would be more liked.”

You could also print off the attached sign to carry with you on Halloween, as a visual request.

We don’t wish to rain on the Halloween parade, as distributing candy has been an exciting tradition for our children for many years. We’re just hoping to see a few pumpkin erasers amongst the pumpkin candies in more and more Halloween bowls to come!

The team at Canoe wishes you a happy, safe and healthy Halloween!!!

Social Storytelling

Written By Jess Urcuyo

2014-9-29-social-storytellingWhat really gets your social nerves a-fluttering? What about landing the final interview for your dream job? Flying by yourself to an exotic travel destination where you don’t speak the language? Going to your significant other’s work Holiday party?

What do we do in those situations? We research interview preparation advice, we review travel blogs to read up on the local culture, we practice our elevator pitch to answer the inevitable “so, what do you do?” question. We plan for what we expect to happen and we prepare for the unexpected. It’s a story we tell ourselves where we are the main character. We tell and retell ourselves the story until we think we’ve captured all potential situations that might happen. We rehearse our story until we’re comfortable that we’ll be successful.

That’s a social story. Almost…

Social stories are a technique created by Carol Gray, Director of The Gray Centre for Social Learning and Understanding in Grandville, Michigan in the early 90’s. The technique was first used with children with autism, but the approach has since been found to be successful across the lifespan and with many other diagnoses, as well as individuals who don’t have a diagnosis.

Social stories are designed to provide personal preparation for a challenging situation. Typically written in the first person, present tense, social stories are a script for appropriate behaviour and assist in understanding the perspective of others. Social stories are often a combination of pictures and sentences at the appropriate level of complexity for the individual.

Social stories are used by therapists, teachers, and parents alike to work through social challenges from dealing with fire drills, to accepting losing a game, sharing toys, or even understanding why it’s important to make eye contact.

Read a social story (PDF) that was used to help Emma overcome her debilitating fear of dogs.

School Suspensions: Good or Bad?

Written by Dr. Marie-Eve Dubois

school-suspensionsWe’re now a few weeks into the school year, and while we’d hope things would be settling by now, this is not always the case. Children who had been doing well for a few weeks are now testing their teacher’s limits, while parents of other children have already started receiving calls saying their child might get suspended. One way or the other, these phone calls are distressing to many parents. Aren’t suspensions bad? Or is there any positive to them?

School suspensions are one of the consequences used in hopes of helping students regulate their poor behaviours. However, as a psychologist, this strategy has always boggled my mind. Essentially, the strategy involves having a student stay home for a given amount of time (a day or more) for displaying poor behaviours in school. For most children, this will feel more like a reward than a punishment, which was the initial intention. As a general rule, in-school suspensions or other more appropriate consequences should be chosen. For example, if the child misbehaved in a class on multiple occasions and has led the teacher to miss out on teaching time, the child should have to ‘give time’ to the teacher to ‘repair’ their misbehaviour (for example, helping the teacher prepare other activities outside of class time).

However, as with any good rule, there are always exceptions. School suspensions could be argued as a ‘good’ thing for children with special needs. Parents of children with special needs tend to get more calls than other parents to come and pick their child up from school for poor behaviours. However, parents should refuse to simply pick up a child. Ideally, what would be needed is a plan for the school to handle such behaviours. Otherwise, parents should ask whether their child is being suspended, in which case they’ll come to pick them up. Seems unusual, right? It turns out that whenever a child is suspended, a note in their record is made. Many school suspensions in a child record could then be used to argue that the school is not meeting the child’s need, and that the child needs additional services.

What have your experiences been with suspensions? Good or bad?

 

How Can an IPRC Help Your Child?

Written by Diesje Hiltemann

how-can-an-iprc-help-your-child1Your child has a diagnosis, you’ve informally discussed their needs with their teacher, and the Principal has agreed to provide support when it’s available. Seems like a smooth start to the school year, right? Right…everything is great until the support isn’t available when your child needs it.

Did you know that you have the right to formally identify your child’s needs and have your school commit to the support that is appropriate for child to receive? That’s what an IPRC can do for you.

An IPR–what??

The IPRC is the Independent Placement and Review Committee. It’s a vital step for all children who have an exceptionality, whether they are gifted, have a learning disability, or have another diagnosis such as autism or ADHD.

Only two people can ask for an IPRC meeting to be called – the parent or the school principal. The IPRC is where you, the parent has a voice. Don’t pass up on your right to be heard. Request it in writing to your principal.

What does the IPRC do for my child?

There are three main decisions made at an IPRC:

  1. Is the student exceptional?
  2. What is the exceptionality?
  3. What is the appropriate placement?

How do I know if my child is exceptional?

If their diagnosis impacts one of the following areas, they may be considered exceptional:

  1. Communication
  2. Behaviour
  3. Intellectual
  4. Physical
  5. Multiple categories

how-can-an-iprc-help-your-child2What placements are available to my child?

  1. Regular classroom with indirect support
  2. Regular classroom with resource assistance
  3. Regular classroom with withdrawal assistance (at least 50% of the day in a regular classroom)
  4. A special education classroom with partial integration (your child can go into the regular class for up to 50% of the day)
  5. A special education class on a full time basis

I’ve decided to request an IPRC – what else do I need to know?

  1. Read your school board’s Special Education Plan
  2. Understand the Special Education Laws
  3. Understand how to work with the system to get what your child needs
  4. Have a realistic sense of what is possible
  5. You have the right to bring an advocate with you – it could be a therapist working with your child, a professional educational advocate, or a family member/friend.

For more information, consult the following:

Halton District School Board Special Education Plan:

http://www.hdsb.ca/BoardroomTrustees/SEAC%20
Downloads/Special%20Education%20Plan.pdf

Halton Catholic District School Board- Special Education Annual Plan:

http://www.hcdsb.org/Programs/SpecialEducation/
Documents/HCDSB%20Special%20Education%20Annual%20Plan.pdf

Visual Schedules

With the new school year begun, many of our little ones are showing difficulty adjusting to their new routines. Some children can be disorganized as they attempt to complete their morning routine. Others experience stress at school with not knowing what activities will come next, and the comfort of knowing when it’s home-time is a mystery. Visual schedules are a simple, easy to make item that parents and teachers can create, to support these children. Here is an idea for morning routines!

visual-schedules1-2

Simply, take clothes pins, and write the morning tasks on each one. Tasks may include; brush teeth, eat breakfast, and kissing parents’ good bye. Your child can hang this schedule on his or her bedroom door, and remove each clothespin as each task is completed.

Here’s another idea for a school routine:

visual-schedules3

Parents and teachers can find pictures online to print, laminate and affix with Velcro on their backs. Pictures should include all activities that occur at school, so parents are encouraged to connect with classroom teachers about events of the day. Typically, you will find recess, circle time, gym, assembly, table activities, free play, lunch and home time as part of most school routines. Simply have a bag or basket to hold the pictures displaying activities for the day. The classroom teacher can place the pictures sequentially in place within view of your child to refer to throughout the day. Pictures can be ripped off and returned to the basket as each task is completed!

My tummy doesn’t want to go to school!

Has your child suddenly started having tummy aches right before going to school? Or better, feeling nauseous, causing you to cancel work for the day at the last minute? Maybe junior is even calling you from school because he’s in horrible pain? You’ve visited your family doctor or pediatrician, maybe even went through a few blood tests or other exams, and EVERYTHING is fine?

Seems like your child is suffering from the oh-so-common ‘My tummy doesn’t want to go to school’ phenomenon…which is more commonly referred to as Somatization. Soma-what?! What this means is that your child is expressing some underlying psychological distress, typically anxiety, through physical symptoms. What happens when we’re anxious is that our autonomic nervous system, which regulates our breathing, digestion and heartbeat, goes into overdrive into a fight or flight response. Our breath and heartbeat grows faster and faster, and our muscles get ready to get into action. Except, there’s no lion to fight, so that response which was adaptive for our ancestors is not so helpful. That tension will then lead to stomach aches, nausea, headaches, etc.

Here are a few tricks to deal with the daily tummy pain:

1)      Acknowledge your child is in pain. It’s not ‘in his head’. His or her anxiety is ACTUALLY creating physical symptoms…like when you have to give a presentation at work and your hands get sweaty, but worse.

2)      Practice ‘belly breathing’ twice a day for 5 minutes. If you’ve done any yoga, this is essentially how you’ve been taught to breathe. The goal is to have your child breathe in (from his/her nose) for about 3 seconds, then breathe out (from his/her mouth), for another 3 seconds. Only the belly should be moving (not the chest). Once your child has mastered this strategy in non-stressful situations (for example, when coming back from school and after story time), encourage him to use this strategy when the tummy ache manifests itself.  Here are some ways to make this more enticing:

  1. Ask your child to imagine a balloon of his favourite colour in his tummy. He is to then inflate and deflate that imaginary balloon.
  2. You can also take a small stuffed animal or toy and place it on your child’s stomach when he is lying down. The goal is to have the toy move up and down.
  3. Pretend to blow bubbles, or blow real bubbles! This will force your child to breathe out slowly from the mouth.

3)      DO NOT REINFORCE AVOIDANCE! Establish a rule that your child will have to go to school even with a tummy pain, unless he or she is having a fever or vomiting. Explain to his teacher and/or school secretary that you will not pick your child up from school unless he is having a fever or vomiting. Letting your child stay home or picking him up from school will only reinforce the idea that school is anxiety-provoking and dangerous…why else would your child feel so great when he gets home?

4)      Make sure to try to figure out what it is that is making your child nervous about going to school. Is He noticing he’s not on par with others? Is he getting bullied?

If you’ve tried this at home and are not seeing any improvements, consult with a qualified professional. Cognitive-behavioural therapy is a great way to help!

Transition Back To School

back to school

The transition back to school after two months of holidays can be a struggle for all kids, especially those on the spectrum or those with other developmental disabilities. Here are a few tips to help ease the transition for both parents and kiddos this September.

  1. Prime you child for the Transition – Talk to your child about going back to school a few weeks before school starts. Putting the event on a calendar or using a countdown can help kids anticipate the start of a new school year. Some children will benefit from a discussion about what will be different come September versus what will be the same. If you know the details about the child’s teacher, educational assistant or classroom use these details to discuss what they can expect come September. Remember to keep the conversation fun and positive!
  1. Get into the School Year Routine – Adjust bedtime and wake up time according to the school year schedule a few weeks before classes start in September. Practice getting ready for school (e.g. waking up, getting dressed, eating breakfast and brushing teeth) so that come September, you can ensure you give your child adequate time to prepare for their day.
  1. Establish Consistent Communication with your Child’s School – Ensure that you are communicating with your child’s school enough to help both your child and his or her teachers succeed. When a teacher is familiar with a student (e.g. their learning profile, interests, strengths, triggers and areas in which they need a little extra help) they can prepare the environment and lessons to set your child up for success.

As a parent, you know your child best! Anticipate any anxiety or struggles they might have with the transition back to school and be proactive! Wishing everyone a happy, safe and productive school year!​ Canoe Therapy provides comprehensive paediatric therapy care including, occupational, behaviour and speech therapy as well as psychology and physiotherapy. We also provide assessment and diagnostic testing and documentation for additional school or insurance benefits. Contact our Burlington therapy office today!

Robin Williams and Suicide Prevention

The death of Robin Williams this week has taken the world by surprise. How could a man who has made us laugh so hard be in such a rough place that he decides to end it all? My personal favourite was his role in Patch Adams…he was a wonderful, caring and creative doctor who got that kids needed more than medications to feel better.

While he referred to his history of substance abuse and depression in his stand-up comedy, it is hard to reconcile how happy he made us, yet how unhappy he felt. Robin Williams first battled addictions in his late 20s. After more than twenty years of sobriety, he fell again in 2003. He went back in rehab in 2006, and then again earlier this year. He suffered from a severe depression, which led him to commit suicide.

According to Statistics Canada, there were a total of 3,890 suicides in 2009. The suicide rate for males was found to be three times that of females, with the highest rates for males between the ages of 40 to 59. Suicide was also found to be a leading cause of death in young people; 202 individuals aged 15 to 19 died by suicide during that year, which represents 25% of all deaths for that age group . According to the World Health Organization (2012), ‘depression is the first leading cause of disability when measured in years lived with disability.’  Depressing, isn’t it?

Today, the world talks about mental health and the importance of prevention. I cannot stress how important prevention and early intervention are. Depression has been found to be a recurring disorder which often starts during adolescence (Birmaher et al., 1996). During the transition from childhood to adolescence, depression rates triple to reach up to  18% by late adolescence (yes, this means that over a period of one year, 18% of the population age 18 suffered from a significant level of depressive symptoms which impacted on their functioning) (Birmaher et al., 1996; Hankin et al., 1998). This makes depression the most frequent mental disorder in adolescents (Keenan & Hipwell, 2005).

What does that mean? It means that in the memory of Robin Williams, and too many others who have left too early (for example, Amanda Todd and Rehtaeh Parsons, two teens who committed suicide after being victims of cyberbullying), we need to encourage those we love, young and old, to seek help. How can we do that? A great first step would be to help reducing stigma around mental health issues, which can be as simple as not calling people ‘crazy’. No one would think twice about telling a friend who has cancer to get treatment. Why should it be different if they have depression?

Our thoughts are with Robin’s family and friends and all those impacted by his passing. If you or a loved one are experiencing depression or suicidal thoughts, we encourage you to seek help from a qualified professional. If you need help now, call Kids Help Phone at 1-800-668-6868.

“You treat a disease, you win you lose. You treat a person, I guarantee you, you win no matter the outcome”– Robin Williams as Patch Adams

Importance of Play

With the rise of video and computer games, we sometimes lose sight of how crucial good ol’ fashion playtime is for childhood development. Nancianne Chin, a Speech-Language Pathologist here at Canoe Therapy, is here to share the many ways that play helps children grow.

This past long weekend has been a wonderful time to witness parents taking their kids to parks, teaching them how to rollerblade, watch nature, and run around with friends. The speech-language pathologist in me just can’t help but very enthusiastically tell these parents; Great job! You’re helping your children learn to use language! Kids having opportunities to play is a very important component to supporting their language development. It’s as important as letting kids move to develop their physical strength and coordination.

When babies touch textures, sort shapes, and bang pots together, their young brains are noting the different elements of touch, sight and sound. They then learn the language that connects to all of these experiences; This cat is soft, this star twinkles and the banging that mommy calls ‘loud’ makes her laugh and cover her ears.

When children make believe, they are practicing the social scenarios they have heard in their environment for later use. ‘Thank you for coming to our tea party, ladies. Would you like me to pour you some tea?’

The new experiences that children encounter, such as a trip to Lego Land or a Splash Pad, are often verbally shared with other family members and friends at a later time. This sharing of information is called ‘story retell.’ Times spent sharing experiences may be fun, but it is also helping a child share relevant information in a sequential order to support listener comprehension. Parents supporting children with story retell are teaching them about what details are important, and how to organize events when sharing.

My own weekend was similar. The young people at my home had limited video game time. We taught them how to make sushi and ate together. New vocabulary learned included ‘wasabi’, ‘ginger’ and ‘nori’.  I explained that outside of the home, it’s not socially appropriate to load up on wasabi and start banging on the table or exclaiming ‘Ugh!! It’s burning my nose!’ That is only okay at home. Also, it is likely an experience that will be shared with friends at a later time. Just as I’m sharing it now.

If you are interested in Speech-Language Therapy for your child, or any of our other therapy services, please contact our Burlington therapy center today!