One of the biggest shocks only came after I heard the words, "Your child has autism." No sooner had I recovered from the emotional blow of that sentence, I learned that my son's development -- nary his entire future -- rested on my shoulders.
Kids with autism fare best with early intervention, various therapies that range anywhere from $100-200 per hour. While the provincial government here in Ontario recently vowed to improve wait times and increase access, the current funded therapy (averaging 12-16 hours per year) isn't really enough to significantly impact in a child's life. A fact that few people outside of autism circles seem to know.
And so parents who can, supplement or top up the government's offerings. Since my son was diagnosed five years ago, we have paid out of pocket for any number of therapies: from occupational therapy, speech therapy, behaviour therapy, to social skills training.
A conservative estimate puts the cost at $5-10K per therapy per year. Camps and specialized recreation groups are supplemental. While I've been fortunate to work flexible part-time hours during this time, many caregivers are forced to give up careers in order to manage the intensive needs of their children.
The true cost of autism to families is astronomical. It's not just autism, either. Any child with special needs may require therapies or equipment or medication not covered under private or provincial healthcare plans.
I don't for a second regret or begrudge the various supports my son has had over the years. There's no telling where he would be without them. Still, there's no denying that our family has paid a small fortune, the likes of which, if I dared to add it up, would make my eyes water. We continue to prioritize the support my son receives at a given time because we simply can't do it all.
Autism is synonymous with sacrifice -- and not the kind that comes from cutting nice extras like vacations. Countless families fall deep into debt. Some homeowners remortgage in order to finance therapy.
As a parent it's frustrating not being able to give your child everything they need to thrive. But this much is true: every bit helps. Here are five money-saving resources that have made a world of difference for my family and will hopefully help yours, too:
1. Child Disability Benefit (CDB)
If your child has autism or other special need, you could be eligible for a tax credit via the Canada Revenue Agency (CRA). If, like me, you find all things CRA highly confusing and complicated, this Child Disability Tax Credit Guide breaks down the application process. Read more out about disability tax credit eligibility to find out if your child qualifies. The beauty of the credit is that it may be applied retroactively to the year of diagnosis.
2. Registered Disability Savings Plan (RDSP)
An RDSP is special savings plan that enables you to save for your child's future. The government matches contributions, indexed according to income. A step-by-step guide to opening an RDSP can be found here. See a full list of participating banks.
3. Autism Ontario Camp
Every year, Autism Ontario offers a "lottery" fund to reimburse the cost of camps and support workers during March Break and the summer holidays. Apply here. Autism chapters in other provinces run similar programs.
4. Special Services at Home (SSAH)
The Ministry of Community and Social Services manages this funding system. An assessment will determine the particular needs of your child and allocate a lump sum each calendar year, to reimburse the cost of special programs (camps and therapies) or respite workers of your choosing. Apply here.
5. Access 2
This initiative by Easter Seals provides a parent/support worker free or significantly reduced entry to a long list of attractions -- from museums to movies -- in every province. The majority of cinemas across the country take part in the program so it's well worth signing up for the card, which costs around $20 for 3 years. Apply here.
Further funding and private grants are available. If you want to make a real difference in the lives of children with autism and their families, consider making a donation to the local autism chapter in your province.
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Say “hi,” introduce yourself, ask questions... just be yourself. And don’t be horrified if your child asks why our child looks different or "talks funny." Instead of shushing them and pulling them away use it as a teachable moment. You can even ask us to help. “You can tell if someone has good intentions,” shares Louise Kinross, the mother of a young adult with a rare genetic condition and creator of the BLOOM blog.
Parents of children with special needs appreciate the help or will tell you if they don’t need it (please don’t automatically step in and start wheeling our kids around, though). And if you’re the friend of someone who has a child with special needs offer a cooked meal, a coffee date or an hour of babysitting. Our stress levels are sky-high and we always appreciate an offer or real, specific help.
Staring is rude, but if you feel compelled to stare at least offer up a smile. But don’t worry if you just happen to be staring in my kid’s direction while in a sleep-deprived, zombie-like state -– we’ve been there and we won’t hold it against you.
“A friendly smile and/or a hello is so much more welcome and goes a long way in breaking the ice,” says Liza Sneyd, mom to two children with cerebral palsy. And teaching your child to smile is a lot easier if you’re flashing us a grin yourself.
Invite us to playdates and to birthday parties. If you’re not sure how to accommodate our child or how they can participate in activates, just ask us. We’re usually experts in modifying or figuring out creative ways for our kids to enjoy the things that other kids like.
“Hold the door for my daughter instead of letting it slam shut on her and her wheelchair,” says Lana Jones, who has a teenage daughter with cerebral palsy. “Don’t step in front of my son’s wheelchair so he can’t see,” shares Barb DeRoo, mom of a son with cerebral palsy and creator of Zach’s List.
Despite the fact that I get asked to write articles like this, I am not a perfect parent. My kid can get on my very. Last. Nerve. She can also warm my heart like no other -– just like any kid. When you say: “I don’t know how you do it,” my answer will always be: “It’s simple. I do it because this is my child and I love her. It is all I know.”
More often than not parents of kids with special needs have a strong belief in the strength and resilience of their kids. Our kids face insurmountable odds, often with a smile on their face and a lot of strength in their hearts. They are super heroes, not victims. And while you’re at it remember that our lives may have some extra challenges, but we still face the same difficulties you do. Treat us like parents -– it is what we have in common.
Don’t use the word retard (replace it with ridiculous instead). Don’t ask: What’s “wrong” with a child? Initiate age-appropriate conversations and don’t automatically use baby talk. Use "people-first" language that puts the person before the disability (e.g a child with autism, not an autistic child). It’s not about being politically correct, it’s about the fact that words matter. After all you are reading this, right?
Kindness isn’t sympathy or pity –- it is being a good person. Teach your children the same. It really is that simple.
Follow Julie M Green on Twitter: www.twitter.com/juliemgreen