Advocacy is not a 4-letter word

Extraordinary Needs
December 6, 2016
A New Place to Write
January 14, 2017

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 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.

Tina Szymczak
Tina Szymczak
Tina Szymczak is a 40-something mom and wife with two spirited boys. She has worked in early intervention and as an advocate resource for families with a loved one with a disability. Now she also writes a blog about raising children with complex needs, trying not to lose your sense of self as you parent, and her struggles with mental health.

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