Parenthood changed me, as it should have done. When J was first born I remember feeling calm and cool after his delivery. I felt like I slid into motherhood with ease, as if I had always been a mom and only now, I had the baby to prove it. I had my own ideas about how things should go and I felt pretty confident that if I screwed up along the way, it wasn't going to make or break whether or not J would end up in prison vs. being a brain surgeon.
I made a lot of decisions in parenting along the way that I knew my family may not have agreed with. I would usually stubbornly stick to my guns, but I had that guilty-pre-teen-desperate-to-please feeling that I've disappointed someone and gone against their wishes. If I made a decision on my own, I would often feel guilty when I told people about it because I probably should have run it by them first.
It is a terrible feeling because it holds you back from enjoying your successes as a parent. It's awfully difficult to revel in your family's accomplishments when you are lacking the confidence that you were responsible enough to make the right decisions for your child. When you are a first-time parent, you realize that you are not so special after all. Because there are a million moms who came before you and they've all "been there, done that."
Then one day two heartbeats on an ultrasound screen threw everything out of balance.
Never before had our parenting skills been put to the test as it was in the latter half of 2005.
Twins were new territory in our immediate circle of family and friends. My husband and I were sick with fear. The advice didn't roll in the same way it had when we were expecting our first. I think it was as scary for them as it was for us. Our son had just turned one year old the week we found out we were expecting, which meant there would only be a 19 month difference between him and his new siblings.
O and W came into the world and our lives were terrifyingly and delightfully turned upside down. There is no greater joy than when you hold three brand new lives in your arms at once. Lives that you know you brought into the world. Now we knew that we no longer had our parents to look to, because we had already surpassed their own experience. It didn't change the fact that the advice would continue to pour in, but we now understood that we were the new authority on life with three under two. And when life never seemed to level out and get easier because of the odd, little, challenging quirks that the twins exhibited, life got a little scarier each day. Because now no one had any advice or any answers.
Autism officially entered our lives on June 7th and then again June 14th, 2005. Not only was this new territory -- it was no man's land. Scary quicksand territory. Never before had our parenting skills been put to the test as it was in the latter half of 2005. Not just our skills, but our belief in ourselves as parents. In our faith that we could do this. In our tenacity to see our goals through. What a year it was; researching autism and making decisions to do whatever we could to get the twins on a path which would hopefully enable them to lead successful lives, despite this diagnosis.
We were at a fork in the road. The way we saw it, we had two options. Take the road that was safe and comfortable that began and ended right where we were, in Ontario; or take the road whose destination was unknown. We could plod along with the boys on waiting lists for therapy, struggle with their challenging behaviours on our own and just learn to cope with our situation and accept that our boys' future would never be as great as we had prayed for them. OR we could look for better and work for more. Find a way to be a success story. Make a move outside of our comfort zone and remember that our boys' best interest always came first.
We turned to our support system for advice and got a million different kinds of feedback. We found that it wasn't long before we knew that we were the only ones who could make the call.
Time and time again I have learned the lesson that autism has been a gift to me in as many ways that it has been a struggle.
We moved to the other side of the country, from Ontario to Calgary, to seek out the best supports and services that we could find for our twins. The move changed me as a parent. Putting miles in between us and our support system forced us to rely only on ourselves when it came to determining what direction to go with the boys. The decisions got tougher and it often felt that we were on our own island because we were so far beyond where we once were and even if we wanted advice, it would have been impossible to bring everyone up to speed to have an informed opinion.
I truly earned the title of mom the year after that move west. I finally turned into a true grown-up. I found in myself the knowledge that I would do whatever it took for my kids to have the best opportunities available and I didn't need to run it by anyone first. If someone disagrees with me, I no longer feel the guilt that I may have disappointed them. Sometimes my decisions may even hurt the feelings of some, but I have learned to put the kids first and not let myself dwell on anyone else. I still struggle with finding the balance between advocating for my children and keeping the peace. I'm a grown up who is still learning.
Time and time again I have learned the lesson that autism has been a gift to me in as many ways that it has been a struggle. Without it, I may have forever been a mom relying on others to guide her through. I feel good about what I've accomplished for my boys and I will continue on.
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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.