Autism on the Hill - April 2

Did you know that 1 in 88 children have autism? And if you're looking at stats for boys (it is more common for boys to be diagnosed with autism than girls), the number jumps to 1 in 54. This statistics are from the U.S., but are often quoted her in Canada because the prevalence of autism isn't being monitored here. These stats are from 2012, so speculation is that these numbers have likely increased. Province to province there are vast differences in the amount and type of support that parents receive. If you start to look at what's going on, it can make your head spin. This is why it's important for government leaders to be aware of what families are facing - both on the federal and provincial levels.

Autism on the Hill is a peaceful event designed to raise awareness about autism. On April 2, families and friends of children and adults who are affected by autism will gather at Parliament Hill for the second year in a row. This event is being coordinated by Suzanne Jacobson of QuickStart - Early Intervention for Autism (a fantastic organization you'll want to connect with if you have a young child on the spectrum).

Before I ever had kids, I knew there was a chance I'd have a child with ASD because I have three families members who are all on the spectrum. Autism has brought a lot of unexpected challenges into our life, but I wouldn't wish it away for even a minute. My son wouldn't be the person he is if he didn't have autism and I adore my sweet little boy.

More and more children are having special needs identified - from developmental disorders (like autism) to food allergies and intolerances. The more we raise awareness of the diversity of needs to be met amongst our young children, the easier it will be for them to find support and understanding within the community as they grow into adulthood.

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Karen Wilson is a mom to Brandon, wife to Matt and business owner trying to juggle all three while laughing through each day at the antics of her husband and son. So, it's understandable when she drops a ball here and there. Right?

The beauty of a visual schedule

by Karen This is a post in an ongoing series I'm doing for Kids in the Capital to talk about our experience in going through the assessment process for our son, Brandon. My hope is to give ideas and insight to families of special needs children, as well as some creative ideas for families who want to incorporate different ideas, all while raising awareness and telling our story.

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A couple of months ago, we took Brandon to a speech pathologist for a series of assessments on his speech/language skills. It was an interesting process. I got to see a very concentrated view of his transitioning abilities, which is an area we've had challenges with for a long time.

And let's face it: Change is hard!

The speech pathologist gave us two really good tactics (and even made some of the tools for us to start with)!

First Then

"First then" is a shortened visual schedule method. We've used it to emphasize pieces of the overall daily schedule at times. Other times we use it to make it clear to Brandon that before he can do what he wants, there's something he needs to do.

Having a visual reference gives a more concrete understanding of what's going on, particularly for children who comprehend visual information more readily than verbal, as is the case with Brandon (based on my personal observations).

Visual Schedule

A visual schedule is portable, flexible and gives an overview of the entire day or a block of time that has a series of transitions. When we use it (and admittedly, we don't always think about it), transitions go more smoothly. We discuss the schedule as we're laying it out and Brandon gets to provide input.

(It cracks me up when he removes bedtime from the schedule, though I'm always super serious and never let him know it's funny. Yeah, right. ;))

Our visual schedule consists of an odd mish mash of items, but as we get deeper into using this as a tool, I am thinking of lots more to add to it.

Getting Brandon involved gives him a sense of control about his activities. This is important for him. He needs to feel safe and secure in knowing what's coming next. We don't like to plan our weekends and often regret not having a plan because we haven't equipped ourselves to adequately prepare Brandon to move from one activity to the next. (We're a work in progress!)

The visual schedule and first then tools would be useful for any child, though some clearly benefit more than others. If you're interested in putting one together, here are a couple resources to help you get started (Google can tell you loads more!):

Factsheet for autism therapy: visual schedules, by Healing Threshold

How-to Templates: Visual Schedules (PDF), by HANDS in Autism

Because we're a tech geek family, I was keen to find out what was available for our iDevices. Turns out there's quite a bit! GadgetsDNA.com did a review of "10 Revolutionary iPad Apps to Help Autistic Children" and I think there's one I'm going to check for a free trial version with the intent to buy if it's good. They range from free to nearly $200 for more sophisticated functionality. (Depending on a child's needs, that $200 may be a cheap expense. iPods/iPads - we've found - are fantastic for helping Brandon explore and learn.)

These tools were my first glimpse of how the pros would end up helping us learn to cope differently. There is a heightened level of attention to detail required of us to accommodate Brandon's needs, but he's worth it. Besides, the right kind of attention mixed with the right frequency has never been known to hurt a child.

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Karen Wilson is a wife to Matt and mom to Brandon (4), who blogs about her life at Karen’s Chronicles. She can be found at Wellman Wilson, helping businesses use social media more effectively. Karen is also committed to doing her part to keep the coffee industry alive, because who needs sleep?

My son has special needs, but I'm not sure what they are...yet.

by Karen I've recently begun writing about our experiences going through the system to get our son assessed.  It all started last summer when we were having communication difficulties around potty training. Eventually, we decided to talk to our doctor about motor skills as well. We've since added emotional development and behavior to the list.

That's a heavy load on our minds as parents, but in the grand scheme of things we are very blessed. We simply have challenges that may be considered by some to be outside of the "norm". And yet, life is just like that.

"Normal" is Relative

I have three family members who are on the autism spectrum so I've always known it was possible that Brandon could be as well since there's a strong genetic link. One family member was diagnosed as an adult and it explained so much about this individual. Resources and knowledge are far different now than they were when I was a child.

It can feel like such a punch in the gut to hear someone you trust tell you that you should think about getting your child assessed, but it's worth it to be proactive.

My experience so far has been so positive - friends are quick to offer support, helpful advice. The specialists we're seeing are incredibly compassionate professionals who take Brandon as he is and work with him. The waiting feels like it will never end, but we're finally seeing results after nearly 11 months.

The Testing Begins

It can be intimidating to go for an assessment, but the specialists we've encountered have been outstanding. They play with Brandon and work hard to engage him in ways that he will enjoy and respond to. When it's clear he's had enough, they generally don't push him too much further.

We've had two assessments so far. There are more to come.

The Goal

This is all part of a grand plan I have to give my son the very best life he can have. These assessments will put us on the right track. I want to know what makes Brandon tick. I want to know how to help him understand me better and vice versa.

Unexpected Inspiration

When I attended a conference recently, I got to see Jason Goldsmith - of The Big Blue Hug - speak about his son Ellis, who is autistic. Check out this video excerpt of the session:

Hearing Jason talk reinforced beliefs I've had all along:

• Nothing is "wrong" with my son. He is exactly right just the way he is.
• Assessments are just a jargony way of saying you have to be creatively vigilant and diligent to learn how to reach a child in the way that works for them.
• I will do whatever it takes to help my son, because just as I get to share my stories in a way that works for me, I want him to find a way to share his.

I'm going to write about this from time to time as we go through this process. My hope is that I can help parents who may have fears about this process by sharing my story.

Do you have a child with special needs? What is the one piece of advice you'd give other parents?

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Karen Wilson is a wife to Matt and mom to Brandon (4), who blogs about her life at Karen’s Chronicles. She can be found at Wellman Wilson, helping businesses use social media more effectively. Lately, she’s also busy planning a little conference and doing her part to keep the coffee industry alive.