This week I attended an excellent seminar about how to best serve immigrants who have a child with a disability. One of the guest lecturers began the presentation in Spanish; her Power Point slides were also in Spanish. Although I could understand the overall meaning of what she was saying and had visual support with the slides (I have a good background in French), I found myself having to concentrate twice as hard as I normally do. I was worried that I was missing important details of what was being said, even though I understood the information generally. What a great way to open this topic by putting us in the shoes of a person who doesn’t speak the language fluently.
The Christmas holidays can be a time of wonder and delight, taking part in family traditions, seeing loved ones, and a break from routine. The holidays can also be a time of stress for those on the autism spectrum who thrive on familiarity and predictability. This can be a difficult time of year, but with some preparation and planning, the holiday season can be enjoyable.
The school schedule can be interrupted with plays, concerts and assemblies. Teachers and educational assistants, give lots of warning about changes in the daily routine. Work in special activities into the visual schedule. Create a social story about a concert or a play the children will see. It is often anxiety rooted in fear of the unknown that causes challenging behavior and avoidance of new experiences.
Allow for some quiet or down time during a day that has new experiences in it. Create a plan B if the school play is too hard for the child to sit through. If a music concert will be loud, perhaps use some noise cancelling headphones to lessen the sound. If the class is planning a Christmas party, walk the child with ASD through what it will be like. There are some great party planning suggestions in Tasks Galore: Making Groups Meaningful. Maybe the child can also help with the organization or suggest a favorite game to play. If a preferred activity is included in the day’s events, the child is more likely to be enthusiastic about it. Think about scheduling a favourite activity right after a new experience so that the child knows when the concert ends, there is some computer time, games, or play time with a much loved toy.
Looking for an appropriate person to provide respite or in-home care can be a daunting task. The person needs to be a good fit with both the child and the family. How do you find the best person? What qualities to you look for?
Before you even start looking and interviewing, ask the following questions and write down your answers:
- What are our family values?
- Do you want someone who shares your family values or do you want to introduce your family to different ways of thinking?
- What kind of pace does your family feel comfortable with?
- What is your lifestyle – casual or formal?
- Is your family structured with routine or are you spontaneous?
- Do you value privacy or are you more open with personal issues?
- How much time are you willing to devote to train someone or do you want someone with a lot of experience?
Our Approach to Children and Adults with Autism Spectrum Disorder and Sensory Processing Difficulties
By Paula Aquila, Occupational Therapist Everyone experiences the world a little differently. The same person may even experience the world differently depending on their level of pain, fatigue or in response to a physical/emotional stress. We experience the world through our senses. Our nervous system receives messages through specialized receptors and relays these messages to the central nervous system where…
Whether you are dealing with a recent diagnosis, transitioning a person to adulthood, starting a child in school, or are somewhere in the middle of these, it is important to ensure success for an individual with special needs. What can you do to help a person have the best life possible?
Here are some things to consider:
A Good Doctor – Having a supportive doctor who listens can make all the difference to a family. Find one that is knowledgeable at giving referrals to specialists for matters they can’t deal with, can see you quickly when problems arise, and can offer help with difficult problems from sleep disturbances to challenging behaviors. A doctor also needs to sign the Disability Tax Credit form (T2201 form).
I’ve just started reading Mark Durand’s new book Optimistic Parenting. Durand has studied the nature, assessment, and treatment of behavior problems in children with ASD. He has spent the past 3 decades working with individuals with ASD, their families and other professionals. He wrote this book to be a self-help guide for parents and suggests great strategies for children and parents.
What I like about this book so far is the personal stories from parents. What they say and experience raising challenging children rings true – feeling guilty, no time for themselves, fear of what the future holds, frustration and exhaustion. How can you have a good life in the world of special needs?
Siblings of children with autism play a unique role in the family. Important as that is, they are often the ones who get less attention, not enough alone time with parents, and adjustments to make in their lives due to the demands of the child with autism. The key to family harmony is fostering an understanding of autism and the importance of the role a sibling plays in a child who has autism.
For families who have a child with a disability, a Registered Disability Savings Plan (RDSP) is a great way to start saving for a more secure future for them. This plan is intended to help parents and others save for the long-term financial security of a person who is eligible for the Disability Tax Credit.
The RDSP program began in 2008. Before the RDSP came into being, disabled people who were receiving payments from the welfare system could lose those benefits if they were receiving any financial aid from their family. Now, anyone can contribute to an RDSP on behalf of someone who qualifies for the disability tax credit.
The Edmonton Journal published two letters this week about the lack of services for adults with autism. Anyone with a child over the age of 18 knows there is not a wide range of services and programs available for a person who is no longer in school. In the province of Alberta, an autism diagnosis does not guarantee funding in adulthood through PDD if the person has an IQ over 70. Deciding who qualifies for adult services based on IQ shows we have moved back into the dark ages. Other provinces are following suit with this way of thinking.
Parents are in a constant quest for services, no matter what the age of their child with ASD. The need for services changes with both age and circumstances. What services for people on the autism spectrum are out there and how are they accessed?
If you are a parent who has recently received a diagnosis, finding services can seem like a maze. A good place to start is to visit your provincial government website and look under Child and Family Services. This will be called different things in different provinces, but most governments use a similar title. The government will list how to obtain funding, what programs are offered or subsidized, and what government policy is on assisting families with a disability.
Advocating for your child at school is not an easy task. To be effective, you have to keep your emotions in check, be concise about what problems your child is experiencing, bring possible solutions to the table, and be prepared to wait for change to take place.
One Sunday morning in March, I received a phone call. My best friend, Gertrude, had died in the night. Megan, Gertrude’s daughter, had found the body that morning. Megan has Asperger’s syndrome and at the age of 27, her adaptive functioning levels place her in the eight to eleven year old range. When the police arrived, she was in an hysterical state, threatening to kill herself. She was restrained, put in an ambulance and taken to the hospital. That evening, she was finally seen by a psychiatrist who, after a five minute interview, deemed her fit to go home.
I am a participant in an Alberta Family Life Survey for families of children with disabilities. This is a three year project at the University of Alberta designed to help gain an understanding of the multiple roles parent-carers have and what resources they need to keep the family running. I just received the preliminary results of the first survey. I’d like to share some of the highlights of what 538 families said.
Marriage is work and a lot of it, even when the relationship is a strong and loving one. About 60% of all marriages end in divorce. That is a staggering figure. I’ve read that the failure rate of marriages that have a child with autism is 80%, although I have never seen a confirmed study of this number. Does the autism factor put marriages at a higher risk for breakdown?
Most young families look forward to summertime – a holiday and a break from the old routines. For those who have young children with autism, going on a vacation may be simply out of the question because of the disruption to routines, travelling to a strange place, or visiting with relatives the child is unfamiliar with. Throw in a special diet into the mix and travelling becomes even more difficult. You have to avoid restaurants and take your own food everywhere.