Tina Szymczak

There are times where, as the parent of a child with a disability, you will be told to fight for what your child needs. Us “special needs moms” – we tell each other “fight for him, you know him best” and “the squeaky wheel gets the grease”. People get worked up hearing other parent’s stories. At times I too have believed this way of thinking and engaged in my fair share of fights.  Last week I read a piece that spoke of being a Mama Warrior for your child with special needs and it just seared my heart.  I genuinely felt very saddened by the notion that as a whole, it is thought that parents of kids with a disability need to suit up and prepare for battle over everything their child might need.

The definition of a warrior is “a brave or experienced soldier or fighter”.  Since when is combat looked at as a positive thing?  Don’t we often look for ways to end war and bring world peace? Do people usually seek out ways to fight others? If you wouldn’t tell members of your family to “fight” for things they want at their job, why do we tell it to parents just trying to have their child’s needs met? When you look for a fight what are you going to find most times? A fight.  Stop looking for one. Believe me when I say there is enough negativity in the world without you adding to it.

Just think about your day to day life. Are people coaxing you, urging you to “fight” with your boss or co-workers? Have a difference of opinion? Well attack those people before they have a chance to attack you. Another co-worker has his idea accepted by top brass and you disagree? Well by all means engage in an intense verbal argument designed to beat down your co-worker and have you be victorious.

I admit – I have filled the role of Mama Warrior many many times. I went to meetings pissed off and just looking for a fight. But what I quickly found was that it did no one any good. Everyone was so busy protecting themselves from being attacked and throwing barbs at “the enemy” that no one could actually problem solve and come up with a plan that everyone could get behind.  I would usually leave those meetings still mad and upset. These days, I am not a fighter for my son, instead I am:

  • An Advocate – The definition of advocate is a “person who publicly supports or recommends a particular cause or policy’. The synonyms for advocate are all positive: champion · upholder · supporter · backer · promoter. Advocacy is NOT a 4-letter word. Sometimes people mix fighting up with advocacy. How do you know the difference? I think it mostly has to do with the way you deliver your message. If you do so with a calm and neutral voice and have the body language of acceptance then you are being an advocate. If you use pressured speech and/or yelling, if you put someone down or attack someone on a personal level you are being a warrior. With my son’s permission I am going to educate people about his strengths and needs in a calm and courteous way. Though I see my biggest role here as to teach my son to advocate for himself (as much as he can).
  • Supporter – to my son and to other families. But also to the educators who really are trying their best, even if their best isn’t what your child needs. I believe that if kids could do well they would do well (Green). So I have decided I also believe this about those in my son’s life – educator, physician, therapist and so on. If they knew all about my son and had the right perspective they would be able to reach him. But how am I going to get them the right perspective? Simple answer: I’m not. I cannot go into a meeting and act like I know everything. That alienates people, fast. Instead I go in looking for information about how he is doing and try to drop some information about my son along the way. I also offer the teacher my support – in the classroom, behind the scenes, as a sounding board on a rough day with my son. I let her know that I know teaching my child is hard work. Very hard work. I make sure she knows I am grateful – even if her personality clashes with my son and she doesn’t share my vision for him I know that she is working very hard (just not in the way my son needs). Don’t get me wrong, if something needs to change for my son I make it happen but I just choose to do it in a less abrasive way.
  • Cheering section – there are times where I am going to put aside all the researching, educating, advocating and instead I am going to solely be my son’s cheerleader. I am going to leave behind all preconceived notions I have about my son and I am going to believe in him wholeheartedly. You will hear me from the sidelines, cheering every step of the way. I am going to be there to give him a fist bump to celebrate his effort –not the outcome.

Look for common ground instead of looking for a fight. Instead of focusing on the negative, try to highlight the positive.  Ask yourself what is the end result you are looking for. If it’s getting everyone hostile then by all means pick a fight.  I know that some people are going to say “ya but if I don’t fight nothing ever happens” and I would ask: Have you ever tried? Have you gone into a meeting well prepared but calm and stayed that way no matter what was launched at you? Maybe I am being idealistic but I can say these strategies have worked for me time and time again. I just think the world would be a lot better if there were fewer fights.

December 14, 2016

Advocacy is not a 4-letter word

There are times where, as the parent of a child with a disability, you will be told to fight for what your child needs. Us “special needs moms” – we tell each other “fight for him, you know him best” and “the squeaky wheel gets the grease”. People get worked up hearing other parent’s stories. At times I too have believed this way of thinking and engaged in my fair share of fights.  Last week I read a piece that spoke of being a Mama Warrior for your child with special needs and it just seared my heart.  I genuinely felt very saddened by the notion that as a whole, it is thought that parents of kids with a disability […]
December 6, 2016

Extraordinary Needs

A woman I consider my mentor once told me that her biggest regret was not spending more time with her other kids as she was always busy with her daughter with complex medical needs. Later that same week my 5 year old son sat in the back of my van and piped in “Mom, let’s have a meeting”. I asked him why he wanted to have a meeting and he said “So me and you and Dad can be together. I know, I will bring paper and pens and you bring snacks”.  I wept silently the rest of the way to our destination. My 5 year old had figured out one of the only ways to get his parents attention […]
November 1, 2016

Flying High and Looking Back

I’m still flying high from giving my workshop over a week ago.  I still cannot believe I not only wasn’t nervous but that I hit it out of the park.  I really hope I am able to give more talks – I really feel it is a calling. I have Tuesday’s off from work. This is a fairly new development that was a necessity because between my appointments for diabetes and depression I also have to take Corbin to his regular appointments. Not to mention we both have regular bloodwork that has to be done.  Tuesday’s are also supposed to be about giving me a little “me” time.  This hasn’t really been happening very much as there are always appointments […]
October 22, 2016

Achieving Dreams

Yesterday I achieved a goal I have had for quite some time. I presented at the Ontario Association of Infant & Child Development Conference at Caesar’s Windsor. It was my first time presenting at a conference and surprisingly I wasn’t all that nervous. The topic was Our Journey: Finding Hope and Courage Through Family Centered Care.  It was a small audience but that’s okay since it was my first time. It went over very well and several people told me it was their favourite of the whole conference. That was very pleasing and humbling.  Oh and I should say that Corbin gave me permission to share some of his story. In his words, “people need to know”.  I hugged him […]
October 18, 2016

Checking In

So I haven’t blogged for several months. Honestly the summer flew by, we only got to go camping in our new pop up trailer twice and both times were unbearably hot and humid – like sit in your own sweat all day type humid. Our niece Teegan came down for several weeks and she was Corbin’s support person in the evenings. He loved having someone his age to watch movies with and she even managed to get him to go for walks. We loved it because we weren’t inundated with a million requests. He also got his beginner driving licence. Corbin also found his way onto this blog. I knew it would happen one day. I have tried to be […]
July 12, 2016

Harder Than I Ever Thought It Would Be

We worked long and hard to become parents. Years of infertility filled with tests, needles, examinations, surgeries and the loss of dignity. We moved on to adoption and were again met with questions and the need to prove ourselves. But finally the day came and we welcomed a wonderful 3 year old boy to our family. We were so proud and excited to start our new life together. I was new to my job so Adam took a few weeks of parental leave while I finished up my probationary period. From all accounts, they had a great time each day just hanging out and playing and setting up a pool for Corbin.  I was so excited to be a stay at home mom,which […]