The Life You Lead (by Mary Ellen Monk)

Posted by Bruce on January 04, 2015
Check it Out!, Help and Support, Stories

“A guest blog… not exactly the words that I thought I would see when I opened my email this morning to edit Bruce in the City-the blog.  But here it goes.” Mary Ellen.

I am a busy mom of two young boys.  And I know a lot of us are “busy moms” but I often wonder if my life is ever due to be normal again.  My boys are 8 and 5 which seems normal enough but my oldest boy also has autism and is non verbal.  Many people have asked me over the years if I would change it if I could and depending on my mood on that particular day the answer changes.  For the most part though, I would say no.  Would I like autism to be eradicated?  ABSOLUTELY!  But would I change my boy?  Probably not.  I know that seems contradictory but if you live the life that I live, you would realize that it truly isn’t.

I am also a full time working mom and work as a bookkeeper at a local child development centre in my city.  My boys are active in swimming lessons, riding lessons, skating lessons, and hockey and my oldest just completed (after 2.5 years) 24 hours a week of IBI therapy (Intensive Behaviour Intervention) and has finally transitioned full time into the classroom at school.  I know that teachers are often criticized for their “big salaries” and “easy, summers off” positions but I am not one of those critics.  I have seen my son’s teacher and his EA supports put together some of the most amazing curriculums for him to assist him in taking part in a large portion of the day with his peers.  That is not an easy task when a child uses a computer program to speak and has limited receptive language.  But his teaching team is doing it and they are being successful and I am grateful everyday that they are part of his life.

So I manage a full time job, two of the busiest children you will ever meet (one of them being special needs) and I also have an amazing husband that travels a great deal around the world for his job which leaves me to single parent these two busy boys by myself.  On paper it doesn’t seem like that much and I am CERTAIN there are parents who have it much worse than I do so I’m certainly not complaining by any means.  On the contrary, I feel very blessed.  My kids are healthy and happy and I have an amazing support system in place to help.  My boys catch the bus each day from my parents place and I would be at a complete loss without my parents.  I have come to appreciate all of the amazing things they did for me as a kid, and now that they continue to do for my children.  They’re not too eager to learn sign language or the use of the speech device for my eight year old but they are certainly more supportive and loving of my kids than I could have ever hoped for.

My five year old child amazes me on a daily basis.  He is incredibly intelligent, has a vocabulary of a 9 year old and is completely intuitive to his older brother.  It’s been a big responsibility having to be the “big” little brother.  A lot is expected of him from a behaviour stand point, because my older son often claims a great deal of my attention.  It’s not often that a parent needs the 5 year old to be independent in a store because that parent is holding the hand of the 8 year old.  But I know that he will follow along and chat my ear off whereas my eight year old would wander off and get lost if he wasn’t at hand.  The 5 year old often speaks for the 8 year old, telling me what he needs.  He has a lot of questions about the autism though and asks at least twice a week when his brother will learn to talk.  It breaks my heart to have to tell him that the chances are good that he will never hold an actual conversation with his brother.  But it warms my heart when I see them hug each night at bedtime and hear my 5 year old tell my 8 year old that he loves him.

So in all the craziness that I call my “life” I have come to realize that your life is what you make it.  In June 2008, I heard the most hated word in my life, “AUTISM”.  But since then it has become a word that has provided me with a new look on life.  I feel blessed for BOTH of my boys and all of the gifts and learning opportunities that they have brought into my life.  We try not to see autism as a barrier but a challenge to make us better as parents and as a family.  We have never let it stand in our way of doing anything.  We may have to make changes to the way we do something, but we still do it.  My family has been to Great Wolf Lodge, Disney World, Wonderland, and many children’s concerts.  We may be a “different” family but we are a family nonetheless and we will continue to approach the world according to the rules that work for us!

by:  Mary Ellen Monk

Edited by: Mary Ellen Monk, Bruce Christopher

Produced and Posted by: Bruce Christopher for “Bruce in the City-the blog”

(used with permission)

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