Owen and Ben's Journey Through Autism

Owen and Ben's Journey Through Autism

Saturday, April 14, 2012

The Importance of Support.

I have written in several previous posts, that we did not have the support team that we have, I really don't know how we could handle this on our own. We are very fortunate in our lives, to have such loving and devoted family, who are there at a moments notice when appointments, and "life" just happens - which seems often in our house.

I noticed much of the importance of having this structure of love and support when I first met Ryan, over 6 years ago. He came from a family that had Sunday dinners together, that live really close, that spend birthdays together - we were just raised very different. It took a lot to get used to, as my upbringing was a bit different then his - unless it was a milestone birthdays, we didn't have birthday parties for each other, we could live far away and talk once a week, and Sunday dinners stopped when we moved out. Not one way is better than the other, but I feel like the close-support structure is what is needed in my life, and I am glad I have learned that not everyone who wants to be really close to me doesn't have an ulterior motive.

I am very trusting - I will say that. I let people into our lives, because I truly believe I want the best to come out of the relationship. Unfortunately, in being so trusting, I have been burned more times than I care to write about, even burned by my own father, who rented our basement, and then we had to ask him to leave, knowing that his grandson Owen had Autism and couldn't comprehend why Owen was jumping up and down and being so loud - and told me how to parent him, and just tell him to, "STOP" and he will listen... ummm yea, done. What I have found is easy for me to do though, is once I feel like my children (not so much me, but my kiddos) have been or have the potential to be emotionally hurt, turned away, or I feel mistreated, I am actually, "known" for clicking the delete button on them in my life - which sad to say, works for me.

I guess maybe the kids get that from me, I am FOR SURE a visual learner, if you are not in my sights - then you don't exist. Maybe this is a coping mechanism? but it works, it works for me. I have lost several family members with this coping mechanism, and it feels like my heart and mind require them to really understand where we are coming from, and be remorseful for them to be accepted back into my life. It is almost an oxymoron - super trusting but hard to get back into my life if you screw up in regards to my children. I know I am supposed to forgive, but how can you keep forgiving the people that refuse to change?

My time away with Ryan in Vegas is where my thoughts began to pour out, and really take my life, and the life of my children into prospective. I have the urge to be that, "strong, invincible, mama bear" and protect them from all things in this world, and I can for now.. but not for ever. I feel like if I only surround them with acceptance and love, what could go wrong? but things do go wrong, and as much as I shelter them from nasty family members, ignorance, all things that make me want to scream to the rooftop and transform myself into some crazy woman superhero like Batman with a cool car - not so much a mini-van.. I can't.

My friend Nicole, recently went to Toronto to see the new documentary, "Bully". She had the trailer on her facebook, and as much as I knew what I was getting myself into watching it, I couldn't help it. It was literally a 3 minute preview - and I was done. I was crying, and all I could think of was my kids - not just Owen and Ben, Maddie too. Kids are mean - but it is going to be EXTRA hard on the boys. The documentary was based on a family that had an 11 year old boy who had Aspergers, and was bullied. He was bullied so much - he took his own life. Seriously, this happens. It happens at the school, it happens on the bus - it happens on the Internet, it happens everywhere - and reading about this story and watching the heartbreaking parents on the Ellen show made me realize, I won't be able to protect the kids from everything. The parents who lost their child, explained they knew he was having problems at school, but his home life was wonderful. They had support, they made him feel loved - and that's what I thought. No matter what happens in the outside world, our home and our family is all that is needed ... sometimes unfortunately, it's not.

Knowing that kids are super mean, and in one way or another, all kids gets bullied to a certain extent, it makes me even more want to speak at schools and inform kids that, people with disabilities, not just Autism, they just learn different but they are people too. I felt like when I spoke to Owens class, even being just little 4 and 5 year olds - they understood. I don't worry about Owen with his friends at school this year, and yes - I know when kids grow up, they become meaner and smarter.. as of right now, sitting at Owen and Aidan's table at lunch is the place to be for the kids, they fight to sit with the 2 beautiful ASD boys.. but how long will that last?

I believe it is my job to go into the school that Owen, Maddie and Ben attend and educate.. remind and educate the kids and teachers every year that Owen and Ben are the same as you - they just learn different, we all do.. and Maddie is one of the strongest people (not child, but person) I will ever know, and she loves her brothers to the moon and back.

Love and Support are the foundation of my family - and I am adding education, because my hope is once people are educated, love and support follow.




  1. I love you Vanessa, you could be an autism task force all on your own. Your heart pulls you to do these things and your love inspires you. But at the same time it is an attempt at self-preservation. If you know the kids they spend their days with understand them/accept them, it will give you back some peace of mind. Going into the classrooms is an excellent idea. You have inspired me to do the same when the time comes.

    As for keeping certain people away, I had one of my first experiences yesterday. My half sisters sister came to visit her at my home while she was helping me with my boys. Her sister was uncomfortable with the amount of attention Nathan was getting and constantly tried to redirect our focus from him back to her. Nathan assumed because this person was welcome in our house that he could be very close to her. She was constantly ordering him away from her and asking us to make him stop. I used these extremely frustrating opportunities to educate her every time she made a ridiculous request or expectation of Nathan. She tried to tell us she understood but obviously she did not. It hurt my feelings for Nathan, absolutely, and it made this mama bear angry. But knowing that this person has their own physical and intellectual limits, I decided for my sister's sake, to leave it at that. I did ask my sister though, when her sister left, not to invite her back, and to let her know that this is NATHANS house. Everything he did was NORMAL and that it was not her that was feeling uncomfortable, it was us.

    As you put it so well before. This is our normal, and it made me realize once again, who amongst our closest friends and family really gets it, and who is good to have around Nathan.

  2. This is a powerful post. Abigail has always had a gift for being especially compassionate with other children and I pray she will hold on to this gift throughout her life. We were visiting her friend at Sick Kids when Abby was 4 her friend had lost the ability to walk due to a brain injury and we were playing in a "play area" at the hospital in which all of the other children had mobility issues of some kind. The nurses brought in a little girl, maybe 3 years old who had only stunted limbs. That is to say she had no arms or legs but feet and hands attached very closely to her body. I am ashamed to say I had trouble even looking at this little girl it broke my heart in so many places. I immediately worried how Abby would react to seeing this person and if it would scare her or what? To my surprise she walked right over, lied down on the floor with her and started playing. The nurses were even emotional, and I was reminded how children, all children are innocent in their love of all creatures big and small and can't we all embrace their openness a little more in our every day life. Children can be cruel yes. But it is up to us parents to call them out when their behaviour is unacceptable and to congratulate them when they exude the compassion we all want every day in every way in our own lives.

  3. I love you both so much, and for your comments.

    Brenda - I love you too, you remind me so much of me when I first was going through all the new things with Owen - learning about all the new "normal". Unfortuantely, we are going to be faced with so much in our lives, and teaching people and hoping they learn is our reward. I am so sorry you went through that, in your own home - it breaks my heart that Nathan was turned away, especially in his own home. You are such a strong person, and an even stronger mother - you can handle anything oxoxox.

    Jessica - Thank you for reading! Abby honestly warms my heart. I love that she loves my son, she has always been so kind to him, in and out of the classroom. Your story of her and her kindness at sickkids, seriously - doesn't suprise me. Your child is so thoughtful and compassionate, and your right - our children could all teach us a thing or two when it comes to compassion and how to live and show it. It is up to the parents, but unfortuantely, I get scared relying on parents that maybe them themselves could be more educated. By the way, your daughter is the only child that has asked Owen on a playdate this year - and honestly, it makes my heart swell so much thinking about how much she accepts and loves Owen... and I know she learned her compassion and love through you! oxoxox