Sitting on Santa’s knee and telling him what your Christmas wishes is a childhood tradition, but for children with autism this isn’t always a reality. Long line-ups, loud music, screaming children, and a busy shopping mall can be too stressful for a child with autism. Enter the Quiet Santa Program – geared to children with autism and special sensitivities. The…
Sleep deprivation is a common complaint among parents of those with autism. Children can have difficulty falling asleep, staying asleep, or waking too early in the morning. Lack of sleep can affect a family’s quality of life, lessen a child’s ability to cope and focus, and fray nerves. A new study from the Archives of Disease in Childhood compared information…
Receiving a diagnosis for your child is a life-changing experience. Raising any child is challenging, but those who have special needs have other struggles to contend with. Many families look to family members for support but don’t always get it. Well-meaning family members can say hurtful things, share outdated information, and have their own myths and prejudices around a diagnosis.…
Author Brenda Kosky Deskin has made some great suggestions on how to modify household chores so a child with special needs can handle them. It’s important to practice chores to work towards greater independence. Some chores can also be worked into a sensory diet. Having a child do household chores makes them feel they are contributing members of the family.…
I had an eye-opening experience this week with my social worker about my children’s services. I’ve almost run out of funding on my current contract that will expire next month. Part of the reason for this is because I have not been accessing all of the correct programs. When I said I didn’t know about a certain program, I was told it is my job as a parent to know what the programs are available and what I should be accessing. It’s on a website, which is transparent, and I should be able to figure out all of the information from there. I was dumbfounded because how do you ask a question and search for information when you don’t even know the right question to ask?
I had a similar experience when my son was younger and was still in diapers until the age of 9. A parent told me in passing that I was eligible for funding for diapers because my son was over the age of 3. Why had no one on my professional team ever told me about this program? Same thing with the disability tax credit – another thing I stumbled upon on my own quite by accident.
It boils down to this – caveat emptor or buyer beware. You have to think of yourself as a consumer even where autism supports and services are concerned, read the find print, and do some investigating to find out what you qualify for. So where do you start and who is in the know?
How and when do you tell a child about their diagnosis of ASD? Is there a right age? How do you know when the child is ready to hear the information? These are frequently asked questions around helping a child understand they have ASD.
It is recommended not to start this process before the age of 7. Children under that age generally don’t have enough understanding to grasp what autism is all about. When parents feel anxious about wanting to talk to their young child about autism, I usually suggest they begin with celebrating differences and building positive self-esteem. A couple of good children’s books to start with are It’s Okay to Be Different or Special People, Special Ways. Let them know that each of us is unique, deserving of respect, and we should appreciate different ways of seeing the world.
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.
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?
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).
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.