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Archive for category: Kids

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Supporting Autism, One Amazing Mother at a Time

Julie Entwistle, MBA, BHSc (OT), BSc

According to Autism Speaks, Autism now affects 1 in 88 children and 1 in 54 boys. The 2012 numbers reflect a 78% increase in reported prevalence in the last 6 years (www.autismspeaks.ca).  This is a growing problem, impacting more and more families each year.

Autism is a spectrum disorder, meaning that the signs, symptoms and severity can vary, making this difficult to diagnose and sometimes treat.  Yet through therapy, children with Autism can learn to function and communicate as independently as possible at home, school and with their peers.  In April, Entwistle Power is sponsoring the Burlington Autism Gala – a fundraising event being organized by Jessica Langdon – a mom motivated by her son’s journey with autism who has a vision to find answers and to obtain support for families faced with this diagnosis.

In support of the Gala, Occupational Therapist Justine Huszczynski wrote the following about her experiencing working with Jessica’s son Spencer, and in doing so, highlights some of the features of Autism, and the value of occupational therapy for these children:

When I first met Spencer I was introduced to one of the most intelligent little boys that I think I will ever come to know. He impressed me with his ability to read at such a young age.  He could print his name and spell many different words that I had never seen another child his age be able to do.  I think it was this intelligence that could easily cause a child like Spencer to slip under the radar. He was smart. He could print. He could speak. But beyond this lay a child who couldn’t handle loud noises, busy rooms, or being lightly touched.  An extreme meltdown was constantly on the brink of being unleashed at any given moment – triggered by a change in routine, being told “no”, or being overwhelmed by the environment around him.  Spencer didn’t make consistent eye contact, he had difficulties with social cues, taking turns, and coping with losing at a game.  Although he was verbal, he couldn’t express his feelings, which often caused a minor issue to turn into an explosive meltdown – sometimes lasting for over an hour at a time.

And then there was Jessica. A mom who was dedicated to her son and on a mission to get him the help he needed and deserved.  Jessica knew her son’s needs inside and out. She came to me with a wealth of information about Spencer and she just wanted to make sense of it all.

We started Occupational Therapy with Spencer immediately.  Jessica was in attendance for every session. She participated, asked questions, provided me with information, and was involved every step of the way.  We targeted goals based on self-regulation, social skills, and sensory processing.  We helped Spencer explore new sensory experiences and used strategies to help him cope with overwhelming situations.  Along the way, Jessica and I sat through countless meltdowns but we worked through them.  Spencer learned how to tell us when he was feeling overwhelmed and he could eventually choose strategies to help calm himself down.  It became easier for him to cope with changes in routine and he improved on his ability to follow instructions.  He was changing before our eyes.

Autism awareness led Jessica to seek help for Spence and his early intervention is what I believe helped him make so many gains in therapy.  To me, Spencer exemplifies the positive outcome that can occur when a child is given the supports they need and are surrounded by a family and team that works towards common goals.  Spencer is by no means “cured”. There is no “cure”.  But there is love.  There is support.  There is awareness.  But we still need more answers.  Constantly we are searching for answers.

justine

Justine Huszczynski
jhuszczynski@solutionsforliving.ca

For more information about the gala, please contact Gala Founder, Jessica Langdon at jlangdon@live.ca.  We hope to see you there!

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Dog Awesomeness

I have always had dogs.  We had two when I was a kid, and when they died, we had two more.  When I moved to University I bought myself a Golden Retriever and two years later purchased another one.  When they passed away we adopted another Golden, and this December brought home a Golden puppy (Timber – photo above) to join our family.  I will say I am totally in love with this breed, and really with dogs in general (we have an adopted cat too but after owning a cat I can officially say I am a dog person).

Yes dogs are hairy, poop in your yard (lots), lick themselves, have eye goop, and occasionally have accidents or barf in the house.  They can chew stuff too, are expensive to feed and even more expensive to train, groom and keep healthy.  So, why bother?  Because animals are amazing for your health, and are becoming more and more recognized as being able to offer therapeutic and functional benefit.

According to Web-MD the health benefits of owning animals are immense.  People that own animals tend to have lower blood pressure, less anxiety and depression, better immunity, and less allergies.  Animals in the home are proven to reduce angry outbursts by people with Dementia, prolong the lifespan of seniors, heart-attack patients fare better in their recovery, and dog owners walk an estimated 68% more than the general public.

Then, there are service or guide dogs.  These dogs are professionally trained at a young age to assist persons with disabilities. While service dogs initially began helping the visually impaired, training programs now exist to teach service dogs to assist persons with a variety of conditions including hearing impairments, seizures, physical disability, autism and diabetes. For example, guide dogs can be taught to distinguish sounds, make physical contact with their handlers, and lead them to the source of noise; be it someone at the door, an alarm clock, crying baby, or a ringing telephone. Guide dogs who assist their handlers with a physical disability retrieve objects, flick switches, open and close appliances, and doors. They are also trained to bark or activate an alert system when help is needed.  They can warn of an oncoming seizure, and some are even trained to protect victims of violence from a perpetrator.  Together guide and service dogs can increase someone’s level of independence, safety, security, and reduce the impact of disability on a daily basis.

It is important to highlight, however, that service dogs are not just pets – these are working animals, highly trained that need to be 100% attentive to their owner at all times.  Distractions can lead to mistakes, and this can harm the dog and handler.  This is why people and children are told to not pet service dogs however tempting that may be.  Ultimately, service dogs should be treated by the public as an assistive device – there to help maximize safety and function, but not to be tampered with.

While the cost to raise and train a puppy to be a future service dog is about $25,000, the Lions Foundation of Canada Dog Guides, and Canadian Dog Guides for the Blind, provide guide these for those in need at no cost.  As part of the process, they match the person to their dog, provide training for the handler, including supply of the appropriate equipment, such as the guide dog’s identification harness or collar.

Beyond the health benefits of pet ownership, Occupational Therapists recognize that guide dogs can play a key role in supporting a handlers’ ability to be more independent, mobile in the community, and safe both indoors and out.  For more information about guide dog programs, talk to your occupational therapist, or visit the Lions Foundation website at http://www.dogguides.com/programs.html or the Canadian Dog Guides for the Blind website at http://www.guidedogs.ca/index2.php.

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Make Time For Family Dinner Time

In today’s busy world it can be hard to make family mealtime a priority and in some cases it has become a thing of the past, or takes the form of people eating while texting, checking a phone, or using a game system.   However, making the time to sit and eat together has valuable physical and mental health benefits.  The following from Health magazine discusses the important advantages of family dinner time.

Health Magazine: 8 Reasons to Make Time for Family Dinner

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Funding Sources for Children Living With Disability

Raising children is an expensive feat. But raising children with special needs can be even more expensive, especially because of the increasing need for private therapies due to the long waitlists and scarce availability of government funded programs. So where can parents turn for financial support to help pay for costs related to therapy, assistive devices, and activities? The following is a list of private and public funding sources that are available for children with special needs living in Ontario:

Private Charities

Ability Gives
Contributes to life changing experiences in children with disabilities by helping their families obtain much-needed medical devices & mobility aids.
www.abilitygives.org

The Children’s Wish Foundation of Canada
A national non-profit organization dedicated to fulfilling a favourite wish for children diagnosed with life-threatening illnesses.
www.childrenswish.ca

Kids Life Line
This service is offered through A Children’s Voice Foundation, and offers a one time fulfillment, of a necessary product or service that will enhance a child’s quality of life and is not otherwise provided by healthcare plans, levels of government or other organizations.
www.acvf.ca/index.php/our-programs/kids-life-line

Deeds & Dreams
Deeds & Dreams is a charity where 90% of all funds go directly toward delivering a child’s special dream.
www.deedsanddreams.com

Give A Miracle A Chance (G.A.M.E)
This charity supports children living withCerebral Palsy. The charity supports children with independent therapies and treatments and provides life management counselling, therapy programs and other support services to enable children to become more independent in their lives and in the community.
www.giveamiracleachance.com

The Easter Seal Society, Ontario
Easter Seals Ontario provides programs and services to children and youth with physical disabilities across Ontario to help them achieve greater independence, accessibility and integration
www.easterseals.org

The Golden Griddle Children’s Charities
Grants wishes to children with disabilities and illnesses. The most popular wish that is granted is a trip to Florida.
www.goldengriddleinc.com

Jennifer Ashleigh Foundation
Assists seriously ill children and their families with special treatment needs, medical expenses, and financial assistance in times of need.
www.jenash.org

Make A Wish Foundation of Canada
Along with the national office, seven independent regional chapters grant magical wishes to children in need from coast-to-coast.
www.makeawish.ca

Ontario Federation for Cerebral Palsy
Provides a wide range of services, resources and programs for individuals with CP and their families as well as professional organizations. These services can range from funding for equipment, education and recreation to housing and life planning.
www.ofcp.ca

Ontario March of Dimes Home and Vehicle Modification Program
Ontario March of Dimes’ Home & Vehicle Modification® Program provides funding for basic home and/or vehicle modifications. The program is intended to assist permanent Ontario residents with a substantial impairment expected to last one year or more
www.marchofdimes.ca

President’s Choice Children’s Charity
Supports children with disabilities by providing financial grants for essential specialized equipment and essential therapies.
www.presidentschoice.ca

Sunshine Dreams For Kids
The Sunshine Foundation is a charity that provides individual dreams to children with severe physical disabilities as well as life-threatening illnesses.
www.sunshine.ca

Government Services and Programs

Assistive Devices Program
Provides support and funding and access to personalized assistive devices to residents of Ontario.
www.health.gov.on.ca

Special Services at Home
The Special Services at Home program helps families who are caring for a child with a developmental or physical disability.
www.children.gov.on.ca

Assistance for Children with Severe Disabilities
Helps parents with some of the extra costs of caring for a child who has a severe disability.
http://www.children.gov.on.ca/htdocs/English/topics/specialneeds/disabilities/index.aspx

Disability Tax Credit
A non-refundable tax credit that a person with a disability can claim to reduce the amount of income tax he or she has to pay in a year. This amount includes a supplement for people less than 18 years of age at the end of the year.
www.cra-arc.gc.ca/disability

Homeowner Residential Rehabilitation Assistance Program
This fund offers financial assistance to low-income homeowners for mandatory home repairs that will preserve the quality of affordable housing. The program helps people who live in substandard dwellings and cannot afford to pay for necessary repairs to their home.
www.cmhc-schl.gc.ca

Incontinence Supplies Grant
This program is for children and youth between the ages of 3 to 18 years with chronic disabilities that result in irreversible incontinence or retention problems lasting longer than six months and requiring the use of incontinence supplies. The grant is a contribution to the cost of supplies.
www.easterseals.org

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When Children Can’t Communicate Pain

A few years back my daughter (age five at the time) seemed a bit “off” when she came home from school.  She was withdrawn, tired, and “didn’t want to talk about it”.  She is my kid that struggles to communicate her needs, especially when she is upset, so I tried to give her some time and control over when she would be comfortable talking about it.  Eventually, I went over to her and in stroking her hair realized this had blood in it.  I pulled her bangs aside and noticed a bump, large bruise, and blood on her head, in her hair, and around her temple.  When I asked her what happened, she burst into tears.  Through some coaxing, I got her to tell me that she had fallen on the playground, hit her head, and was so embarrassed about this she didn’t want to tell anyone.  Her teacher picked up on the fact that something was wrong and sent her to talk to the principal.  To the principal she reported nausea, a headache, and was visibly upset, but wouldn’t tell the principal what happened, and the bump and blood on her head and hair was not noticed.  After I got her to calm down, and did some basic mommy first aid, I explained to her the importance of telling adults about these things in case they are serious and need immediate attention. 

The ability to communicate pain and discomfort is invaluable – it not only allows a person to express how they are feeling in order to receive medical attention, but also can help them to obtain medication or treatment to make the pain more manageable.  However, many children (and some adults for that matter) are unable to express their pain due to a difficulty with communication, or a developmental or intellectual disability.  This can make it very difficult for health practitioners and family members to decipher their level of pain following an injury, medical procedure, or with illness.

For children that cannot verbally communicate pain, there are other methods that can help.  For example, the Non-communicating Children’s Pain Checklist (NCCPC-R) was designed for children who are unable to speak due to a cognitive disability.  The NCCPC-R can be completed by a caregiver within the child’s home environment, and measures observations of the child’s vocalizations, social interactions, facial expressions, activity level, appearance of body and limbs, physiological signs, eating, and sleeping.  In addition to the home-based version, a postoperative version of the NCCPC-R also exists.

Interestingly, studies have shown that the expression of pain by children with Autism Spectrum Disorder is not significantly different from typically developing children or even from children with intellectual disabilities. However, what does seem to be different is the length of the behavioral reactions of children with Autism, after the source of pain has been removed. This information may be surprising to some, as it is often thought that children with Autism are insensitive or have a high tolerance to pain.  Therefore, caregivers and healthcare professionals need to be aware that although a child with Autism (or any developmental disability for that matter) may be unable to verbally communicate their level of pain, we cannot assume that they are not in pain.  We need to be able to look beyond verbal communication.  One method, using observation, is the FLACC scale (Face, Legs, Activity, Cry, Consolability).  With this, pain in children and adults who are unable to communicate are observed through are range of symptoms that are scored from 0 to 2.

So while my daughter is capable of communicating verbally, emotional upset and embarrassment prevented her from taking the important step of telling an adult about what happened.  Through her behavior and presentation, her teacher, the principal and I were able to see that something was wrong, and eventually, when she was comfortable talking about it, I figured out what happened.  Thus, behavior, verbal or not, is a key indication of how a child is feeling.  It is important for parents and healthcare providers to be aware of the signs of pain in children, verbal or non-verbal, as their bodies can very well communicate their level of pain when they cannot do so through words.

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National Child Day

Written by Justine Huszczynski, Occupational Therapist

 

Today marks the date when Canada adopted the United Nations Convention on the Rights of the Child (UNCRC).  Simply put, the UNCRC is a treaty that outlines the basic human rights for children and youth.

                                             

Among other rights, the UNCRC outlines “survival and development rights” which are explained as “the basic rights to life, survival and development of one’s full potential”.  Looking into this a little deeper, Article 23 under the “survival and development rights” states:

 

“Children who have any kind of disability have the right to special care and support, as well as all the rights in the Convention, so that they can live full and independent lives.”

           

So, how is Canada ensuring that the rights of children with disabilities are being fulfilled?  Of course, we have public healthcare which provides children prompt access to medical attention.  But Article 23 goes beyond this.  It also includes the right to services – therapy services perhaps – that children with “any kind of disability” should be able to access such that they can become independent adults and experience a fulfilling life.

 

While Ontario offers plenty of publicly funded early intervention services for children with disabilities (based on the availability of twenty government-funded children’s treatment centres across the province), how are the outrageous waitlists for some of the most valuable services offered in these centres acceptable?  For example, last year the Toronto Star surveyed nine of the government-funded treatment centres and found average waitlist times ranging from one to FOUR years for a child to receive intensive behavioural intervention (IBI) therapy.

 

So how does this follow the guidelines of the UNCRC? Honestly, it doesn’t.  Simply having a service available to a child with a disability is not enough.  The service needs to be provided.  Long waitlists do not allow children to “live full and independent lives” but in fact can stifle a child’s development by denying access to programs that are most effective as “early intervention”.

 

Therefore, while we celebrate how far we have come to secure the rights of children, we need to look ahead and aim for a brighter future for those children that may need some extra support – sooner rather than later.  An example of striving for a brighter future comes from the parents of one of my clients who devoted their time to being their child’s advocate when “he didn’t have a voice”.  After this young client was denied services by one of the government-funded children’s treatment centres in Ontario, his parents scheduled a meeting with their local Member of Provincial Parliament (MPP) to advocate for their son’s dire need for early intervention services.  As a result of the advocacy skills of my client’s parents, the MPP ordered the treatment centre to complete a reassessment and the child was granted the early intervention services that he absolutely deserved and required.  During a conversation with the mother of this client, she stated, “It is my job to be make my child’s life better”.   This statement is heartwarming, and perhaps we should view it as a challenge.  A challenge for all of us – therapists, health professionals, teachers, citizens, governments– to truly make it our “job” to ensure children are given the best life possible.  So take the challenge and advocate for our children – ask more questions, get second opinions, research the available charitable funding, schedule meetings with your MPP, school board trustee, and don’t take no for an answer.  

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How Do You Learn?

October is National Learning Disabilities Month.  Learning disabilities affect millions of people across the globe, and these are often overlooked or misdiagnosed.  They can affect both children and adults and can be detrimental to education, work and overall quality of life if left untreated.  The following from the Learning Disabilities Association of Canada discusses learning disabilities and provides an understanding of how certain disabilities can be treated and helped. 

Learning Disabilities Association of Canada: Understanding Learning Disabilities

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Make Sure to Make Time For Play Time

Looking to connect with your kids?  Then break out the dress up box and indulge them (and yourself) in a game of pretend.  Whether playing school, store, dressing up for a ball or to fight a dragon, pretend play can get imaginations flowing, help with emotional issues and strengthen the family bond.  Research has shown that especially for kids with special needs, pretend play is a must.  Whether you join in or simply encourage your child to play pretend on his or her own, stepping into an imaginary role can do wonders for your entire family!  And this does not include turning on the TV!

Everyday Family: How Pretend Play Helps Kids with Special Needs

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Homework Help Guide

There is a great debate among parents, educators and the general public on the validity of homework and whether or not it is too much for our young children.  Many feel that school work should only be done at school and we should let kids just be kids once the school day finishes.  Whichever side of the fence you sit on, depending on the school board, individual school or teacher, homework may be a part of your child’s life … and yours.  It is natural and good for parents to be part of their children’s education and helping with homework is a great way to be involved.  However, parents need to know when to step in and help and when it’s time to step back and let your child complete the work on his or her own.  Homework is a great way to foster independence and self esteem, if you handle homework time right.  The following article from Today’s Parent gives great tips on when and how to help your children succeed without becoming overly involved.

 

Today’s Parent: The Do’s and Don’ts of Homework Time