Autism is a part of my daughter, just like her hair is blonde, and we love that blonde hair, wouldn’t change it for the world.  When Matea was first diagnosed, it was difficult.  I found it really hard to hear words like “global developmental delay” and “self-harm” but the hardest part was watching my wife.  She has more knowledge (don’t let her read this or I will NEVER live that down) and a better understanding of some of the terminology. Every negative word out of the therapists’ mouths, or in an article she had highlighted, was like an arrow to her mom armour, and there was nothing I could do to shield her.  As a man I am what my wife likes to call “a fixer”. I like to survey a situation and fix it, so it has been a difficult transition for me: I can’t fix everything, I can only support.  I have to listen and not just do what I think will work.  We have to work as a team, always.   

As a dad I don’t think I have the chance to get down about my child’s diagnosis.  It would be selfish of me to expect my wife to constantly worry about me, when she is really the one in the “autism trenches”.  I see it as my job to help everyone in our family, and make sure I know what goals we are working towards with Matea (or so help me, my wife would definitely have something to say if I didn’t), and watch to make sure our typical boys aren’t getting lost along the way. But don’t get me wrong – we grieve. My grief may look a little different than my wife’s, but it’s there. When the “Daddy Daughter Dance” flyers start popping up, or my brother showing off his daughter’s latest gymnastics pictures at Christmas time, I am reminded that my girl doesn’t tolerate any fabric but cotton, and following a dance routine is not where we are right now. On some difficult days, my mind always wanders to walking her down the aisle on her wedding, I don’t often allow myself to think about it, because the reality is not something that I want to spend time thinking about. What I do like to spend my time doing is celebrating all our successes – this is so much more powerful and positive (for me) than dwelling on what we aren’t doing yet.  I am thankful that I get to celebrate all the things that come maybe a little easier to a family of a typical child – we celebrate it all. With our daughter’s diagnosis come some unique sensory needs. She loves pressure, which means she loves to hug, and cuddle. While other little girls are starting to become more independent of their parents (and this is our goal for Matea as well), I’m lucky that my daughter wants to jump on the trampoline with me, she wants a piggy back ride, and she loves when we roll her up in a blanket and tell her she is a hot dog.  Most of all she is genuine – she doesn’t give us attention or affection because she wants a toy or thinks she “should”; she is sincere.

My wife and I have talked at great lengths about how autism has affected our family.  Even before Matea was diagnosed, we were never “rat race” people.  I work as a foreman, and Jess was an inclusion teacher at a local middle school. While we were both happy in our careers (Jess perhaps a little more passionate than me) we still always made time for family and our children. After Matea’s diagnosis we decided that we were actually given a gift that most people search their entire lives for.  Ten years into our marriage we already know what is most important!  Money, trips, fancy cars, and a brand new house will not help Matea’s speech delay, fine motor delay, and behavioural issues, but the gift of our time, and building that relationship with our daughter (and our boys) and ALWAYS being present for our children – that is what we believe is most important.

Preparing A New School for Your Child

It’s that time of year again where we are starting to look forward to the next school year! For many parents, picking a school and sending your child into kindergarten can be really scary. When you add in all the extra concerns that come with having a child with special needs and how hard transitions can be, it can seem daunting! There are a lot of working pieces to keep our kids happy at school. My son has no functional language and therefore relies on me to make sure that the school will be able to meet his needs.  When you meet with your new school there will be discussions about academics, sensory needs, medical concerns – the list goes on and on! But I have found that making sure the basics are taken care of is often overlooked. I want my child to have a meaningful inclusive education, but I also want to know that he will be able to use the washroom when he needs to. I have built myself a cheat sheet over the past few years and it focuses on the basics, the stuff that will not be constantly changing and the stuff that, as parents, we can plan for and set up ahead of time to ensure our kids feel safe and confident that their needs will be met. I have broken it up into four categories: bathroom needs, eating at school, in the classroom, and outside. 

Bathroom Basics  

I like to talk about the plan during our first school visit.  I bring in all my supplies in the visit that we do before school starts (usually the last week of August), set everything up, make sure it is all labeled and that the person who will be primarily responsible feels confident that they have a plan. You will need to be VERY specific about how your child is changed or taken to the toilet (Do they lay down to get changed? Is it done standing? Do they sit or stand to pee?). If your child needs visuals or a social story, get all the pictures needed during the visit. The following is the list of questions that I bring with me. They will apply to each child differently.  Be prepared to write down their answers, or even let them get back to you. They may need to make a plan.

We have moved three times. My children have transitioned from pre-schools to kindergarten and I have never come across a school that isn’t happy when I bring up these questions and even happier when I get everything all set up.  So here are my go-to questions:

• Where will my child be changed?
• On what will they be changed?
• Do I need to supply a mat?
• Who will be changing my child? And if they are away, then who? Decide how many people you are comfortable changing your child and tell them. We have said 3 people are allowed, and we know who they are.
• What do I need to supply?
  • Pull-ups
  • Wipes
  • Gloves
  • Cream
  • Change of clothes
  • Potty reward if applicable
• Who supplies the potty seat, if needed?
• How will supplies be transported to school for my child’s privacy?
• What schedule will you be changing them on or going for bathroom breaks on?
• How can I help support you in making this easier?

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Bubbles for Autism Across Alberta

Here’s what a couple of communities are doing for April 2, World Autism Awareness Day. There’s still time for your community to organize an event. If you want to get the word out about what you are doing, let us know at AAA@autismsocietyalberta.org!

Please join us in Red Deer, Alberta this April 2nd 2015 at 5:00 p.m. as we celebrate Autism Awareness Day.
 

 
We will be meeting at Bower Ponds (4707 Fountain Drive Red Deer) on the steps of the Cronquist house and then walking to the park and blowing bubbles all the way!

Please invite friends, family, teachers & neighbours!

This event is a fun way to make our communities more aware of autism and the needs of those affected by it.

For more information, contact central@autismsocietyalberta.org

Come Blow Bubbles for Autism in Calgary!