Jul 05 2013

Change Is Inevitable… Growth Is Optional

shutterstock_55907950Change is something that happens in life.  Sometimes we make it happen, and other times it’s unexpected.  Either way, it’s an important part of life!  Without change, life would be pretty boring.  Change helps us learn new things and to grow as an individual, and it can bless us with new and exciting opportunities!  For those times when change is more difficult, it strengthens us and can make us more determined.

I am very familiar with change.  I welcome the positive changes and try to look at the more difficult ones as a challenge.  And I really do understand those times where life throws you a curve ball –  you see, I am a mom of a 9 year old boy on the autism spectrum.

Not unlike any other parent, when my son was born, I prayed that he would be healthy.  Counting his ten fingers and ten toes and having the doctor reassure me that he was a healthy baby boy – it’s the best news any parent could get!  As time went on, there were ‘red flags’ that started to appear.  Signs that said, as parents, we needed to be concerned.  The signs were right and at the age of four, the doctor shared the four words that I feared the most, ‘your child has autism‘.

At that moment,  life as I knew it, changed forever.   Like so many other parents I know, I actually grieved.  I didn’t grieve the loss of my son per se, as he hadn’t gone anywhere and he certainly hadn’t changed from who he was before I heard those words!  I grieved more for the dreams and hopes that I had for my son.  What I knew about autism at that point was minimal, and I was scared of what life was going to be like!  I figured that there was something that I had done to cause my son’s autism, and blamed myself for quite some time.  Eventually, I stopped blaming myself and realized that it was nothing that I did, but I also realized that it was time to start figuring out what needed to be done to help my son reach his full potential.  Life was going to be a lot tougher in many areas, but I was ready for the challenge.

After 15 years in the workforce, my husband and I decided that I would stay home with my son until he went to school.  At that point I would return to work.  The news of his diagnosis meant that as a family we needed to do some reassessing.  We had a lot of questions and not very many answers.  We decided that  I would remain a stay-at-home parent.  It’s not really what I had planned for my life, but as a parent, my son’s needs came first.  If that meant leaving the workforce permanently, then so be it!  I looked forward to this new challenge and spending more time at home with my son.

Autism brings a lot of challenges to a family.  Here is one of those times that though change may not be totally welcome we have no other choice but to accept it and deal with it.  It was definitely going to be one of those times that what we were facing was going to make us stronger!

Financially, autism can take a huge toll on families.  Like us, many times families need to have one parent leave the workforce which means a considerable change in the family’s income level.  This in itself can bring about a great deal of extra stress.  Therapies and treatments for autism are extremely costly and unfortunately many are not covered by traditional insurance coverage – at least not where we live.  Families are having to remortgage or sell their homes and use any savings they have in order to try to get the services that their child needs.  And even at that point, families have had to declare bankruptcy as they have gone so far into debt there is no other option.

Have you ever thought of yourself as an advocate?  Well, if you are a special needs parent, you are now an advocate too!   As a parent, you have been thrown into the world of advocacy and you will need to learn the most effective ways to be the voice for your child… at school, with medical professionals and in the community.  In our case, if I didn’t do it, who would?  As an advocate I am very determined and I do what is needed to ensure that his voice is heard.  It doesn’t always make me the most popular, but that’s alright with me.  My son’s voice is heard when and where it needs to be.   I truly feel that sometimes this is a full-time job which is frustrating when, according to the CDC, 1 in 88 U.S. children are somewhere on the autism spectrum.  Society should be more aware, more accepting and more understanding!  So be prepared to advocate and fight for just about everything that your child needs or, you feel, is entitled to.

For our family there has also been a huge social impact.  I don’t like to say this, but the reality is, that unless you live the life of a special needs family, it’s very hard to understand what life is really like.  The stresses… the uncertainty… the challenges!  Society makes it difficult on many levels to live with autism, but other special needs as well.  On a personal level, one of the hardest things that I experienced was losing friends.  Those friends that didn’t understand the demands on my time.  The friends that didn’t understand that I couldn’t just drop everything, call a babysitter and go out for coffee.  I can’t just call the neighbourhood teenager as those that care for our son need to have an understanding of his needs and his challenges.  There needs to be an understanding of signs that can lead to major safety concerns.  There needs to be an understanding, at least in part, of the behaviours that go along with autism, and be able to handle them if they should arise.  Eventually, as friends, we slowly drifted apart as our lives just went in different directions.  It really became too stressful for me to have to maintain these friendships where I felt I was now having to always explain myself more often than not.  However, on the positive side to that, today, I have an amazing group of friends.  Many of them are autism moms!  These are friends that I don’t have to explain anything to.  They are there for me when I need someone to share something with.  They are there to socialize, but also understand that it takes planning in order to find someone to look after my son.  We are there for each other… no judgements… only friendships!


So, if you should happen to be a new autism parent, or a parent of a child with other special needs, be ready for some pretty major changes in your lives.   Autism has taught me to look at life from a new perspective.  I am stronger for these challenges that I have been given.  I have learned to be a strong advocate in our community.  Though it sounds like there are a lot of challenges, accept them and use them to your advantage.  I love my son more than anything in this world!  Would I take away his autism?  No, I wouldn’t!  If I did, he would no longer be the loving, funny, intelligent, creative young man that I see before me.  A young man that loves animals, creating stories, building Lego, making people laugh, playing video games, and the list could go on.  Those hopes and dreams that I grieved for so many years ago, I still have them.  Granted, they are a little bit different today, but my son can accomplish anything that he puts his mind to and I am so very proud of him!  I wouldn’t change him for the world!  By far, he was the best ‘change’ that ever came into my life… our lives!






As a Canadian blogger and the mom of a child on the autism spectrum, Jen shares a lot about life while having a child with autism... raising autism awareness and the need for acceptance. She is an active advocate both online and in the community for those with autism but also service dogs. Also as a volunteer for the I CARE Foundation Jen shares a great deal of information about international parental child abduction (IPCA) in an effort to help raise awareness and educate parents about the risks and warning signs of international parental child abduction. Mom-ology has been ranked in the Top 25 Canadian Mom Blogs for 2012 & 2013, one of the Most Influential Canadian Mom Blogs for 2013 as well as placing in 1st (Disability) & 3rd (Activism & Social Justice) for the Canadian Weblog Awards 2013.

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  1. Tracy @ Using Time Wisely

    Great post, Jen, and very well written. I love hearing you share from your heart. Though my children do not have special needs, I felt some of these same feelings this past year as an advocate for my daughter. Having our children in a private school was a difficult year last year. When my daughter’s teacher lacked understanding of curriculum, my daughter’s schooling was in a downward spiral. As Paul and I fought for her via numerous parent meetings, I became weary. True friends stood by us and supported us from the sidelines, but we were the only ones voicing our concerns.

    When open enrollment came, rising K5 parents started coming to us from the recommendation of some of the parents. You see, no one wanted to speak the truth about this nice, but incompetent teacher, who by the way does not have an education degree. But, I will be kind, but speak the truth, so other parents are not struggling with their child like we did ALL YEAR LONG. We are continuing to struggle this summer as we undo the mess created and try to start her out better for first grade. (FYI – the source of the problem was teaching full cursive (like 2nd grade cursive) in place of manuscript or print. Well, books are not written in cursive, so trying to teach a child to read without the foundation of print letters is nigh impossible. Of course, writing is a mess and the list goes on.)

    As we helped other parents, the school and some “friends” blinded by loyalty to the school, pushed us out. I was removed from all my responsibilities at school. Of course, this only increased awareness of our situation as now others came asking why I wasn’t doing ANYTHING. Let’s just say that our small school is in a divide. We kept our matter quiet and dealing only with the administration. When they removed me, they opened the door to the public.

    So, parents with children without a special needs go through these same struggles. Parents are parents and kids are kids. Change is sometimes good and sometimes hard. We are all in this journey of life together. Keep on advocating. Our kids need all of us on their side. Hugs to you, Jen! <3

    1. Jen

      I knew you had had a tough year this past year… but wow, thanks for sharing all that! How can the teacher not have a degree? Private school or not, that just doesn’t seem right!! You did the right thing… but I know you know that. We all do have struggles and challenges in life… it is far from just special needs parents. I commend you for fighting so hard and doing what you felt was the right thing for your daughter. I understand the ‘friend’ thing too as situations like that really do bring out those that are your ‘true’ friends – those friends that you should treasure!
      I’m sure it is frustrating… knowing your background… to see this kind of stuff go on – not only as a parent, but an educator! And yeah, how do you teach a child at that age cursive?? Heck, we still struggle with basic print, but that’s mostly down to fine motor skills. I sometimes think the ‘old way’ in many ways… was the best way!
      Again, kudos my friend. I am sorry that it got that bad. Lucky that your daughter has such devoted parents and you will get her set for a better year in grade one.
      One day at a time… that’s all we do! That’s all I can do. It’s so far away from the way I used to live, but there is one of those changes LOL…
      Proud of you guys! Hugs back at ya my friend!!
      Cheers :)

      1. Tracy @ Using Time Wisely

        Thanks, Jen. I’m just getting to the point where I can talk about it. It hurt so badly last year that at times I could barely breathe through the tears. I wanted to clarify one thing. Her “teacher” has two degrees – both of them in counseling. She was great if you had a hurt finger or dealt with conflict among classmates. However, she had no clue how to teach the classical curriculum. Classical education is rigorous and the goal is to teach it once in small segments for mastery. Once mastered, then you build on it. Well, she totally didn’t get it which has put the entire class behind moving into first grade or grade 1. We have chosen to keep her in the school because we don’t see an upside to taking her out. If we homeschooled her for a year and got her up to where she needed to be, then she would be so far ahead of her class when we put her back in. So, we carefully monitoring and supplementing at home to get her on the right track.

        Glad to know that we may be alone at our school, but we are not alone in advocating for our kids. Those of you with special needs children do this all the time. I’ve had a little taste of it, and it wore me out. I have more patience and understanding for other parents having dealt with these issues this year. I know my daughter will get it, but I will still hold the school responsible for placing an unqualified teacher in her class.

        Keep on writing, Jen. I love these chats and making connections right where we live. Have a great weekend, my friend. :-)

        1. Jen

          Tracy – you are amazing my friend! You know, I understand totally!! Advocating is an important job and yes, all parents need to do it at some point… sure, as a special needs parent it is truly a daily thing… but we all must learn to do it. You certainly are not alone in advocating!!! I hope that there are other parents that are going to step forward this next year if this kind of stuff continues. Counselling??? How is that supposed to prepare her for teaching?? Wow!
          Will say it again… the kids are lucky to have you and Paul as parents… so devoted and loving!! Again I applaud you for standing up for what is right! It’s not a way to make friends – I’ve learned that the hard way myself – but it is needed. Too many parents sit by – either by not knowing that it is their right or just not wanting to cause waves… and the ones who suffer from that are the kids. You keep advocating!! I know you will… I also know you will have her caught up in no time. Was wondering about next year – hoping that it goes better with hopefully a different teacher. Love our chats as well girl! I hope that you all have a great weekend too. Hope the weather has cleared up. We’re in the rain here these days though the sun is out right now for a little bit – so out we go! Cheers… and a big hug!! xx

          1. Tracy @ Using Time Wisely

            Rain here, too. We went to a minor league baseball game last night and sat through two rain delays. Yep, all 5 us arrive around 6:10 p.m. for the 7:00 p.m. game and left with the home team winning at 11:30 p.m. We definitely made memories and enjoyed an almost empty ballpark by the end of the game. :-) Glad you are able to get some reprieve to enjoy the outdoors.
            Like most parents, we take school one year at a time. We will reevaluate as we go and adjust as needed. Having her participate in a play this summer has heightened her confidence which was at an all-time low – as she had not mastered anything in K5. So, on the wings of confidence, we are riding through manuscript letters. Still getting frustrated, so taking it slow. However, we making some really good strides peppered with lots of fun activities and one-on-one time with Mommy.
            No school is perfect and teaching her to finish the job even when it is tough is a life lesson she gained this school year. Keeping our heads high and aiming for a profitable school year this coming fall as both the 3rd grade and the 1st grade teachers have education degrees. :-)
            Love these chats as well. Thanks for the encouragement. I’m thankful that the past is behind us. Though I don’t forget the problems, I am not dwelling on them. I have chosen not to help the school this coming year. I will assist the teachers, but I’ve lost trust in the school officials due to their decisions regarding hiring and curriculum changes.
            Enjoy your time outdoors, and hugs back! xx

          2. Jen

            Ball game sounds like fun – even with the rain delays :) I totally get it – about the school… been at that point here for quite a while! Sorry you have had to go through all this, but you are handling it well… and you know, as much as I don’t want to say it – more parents should see both sides of things as far as school officials go! Too many put complete trust in them and sadly, I don’t feel it is something that should be done. They have proven here that they are here for their policies and not the children :( Keep on fighting Tracy! You will all come through with flying colours!!! Hope you are heading out to Chick-Fil-A tomorrow at some point… look forward to pics!! Have fun xx

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