November 12, 2013

An Open Letter to Parents of Typical Kids. ~ Deb Purcell

“Everyone you meet is fighting a battle you know nothing about. Be kind. Always.” ~ Author unknown

If everyone walked the earth living by this quote, there would be no need for this blog. We all are fighting our own battles. However, the subject of this blog has come up so many times among fellow MPS (Mucopolysaccharidosis, 
the rare and progressive difference my eldest son Trey lives with) parents, as well as other parents of children who have significant differences, that I feel compelled to blog about it.

Side note: some people may refer to our children as having special needs, but I think we all have special needs, so that word doesn’t fit for me.

I don’t yet have a word that does.

I know parents of typical kids go through some version of this experience because I go through it with my middle son Avery and my daughter Sadie as well. When Avery begged to have flavoured mini-yogurts at his birthday party because we eat raw sour yoghurt at home, I cringed waiting to see the response when he hollered excitedly to his friends (who I’m guessing were expecting ice cream instead of yoghurt at a birthday party) ‘Who wants yoghurt?’ with a huge grin on his face.

Or when Sadie cut her hair to the scalp because she doesn’t like wisps of hair on her face, we discussed that people might ask what happened! Or especially when Avery wore dresses, we both prepared ourselves for what to say when people made comments or gave us looks because it happened every time we left the house (Avery wearing dresses was the closest I have come as a typical parent to experiencing what it is like as a parent to a child with significant differences).

I get it. We all want our kids to be liked and for others to think our kids are as wonderful as we think they are.

But here is one difference: I have not met or spoken with a parent of a child with significant differences who does not have or has not worked through a high level of anxiety just leaving the safety of their own home with their child.

Last week, my partner Ryan was almost in tears taking Trey to a Whitecaps soccer game with Trey’s soccer team because he was so anxious about what people might say, how they might look at Trey, or what might happen.

Our anxiety is not without reason. Our children have been called monsters, we have been banned from public buildings because of the loud sounds our children make, we have been kicked off teams, we have received ‘complaints’ when our children speak with their hands because they cannot talk, to name a very few.

The most common though—it happens if not every, almost every time we go out—are the looks.

The ‘what is wrong with you/him’ looks when our children cannot walk or walk differently, cannot talk or talk more like what is typical for a four-year old, laugh over-excitedly for a child their age, and do anything not typically age-appropriate.

After the looks comes the exclusion in many different forms.

All of that hurts. Deeply. Our children want nothing different than everyone else’s children. They want to be included, they want to be liked and they want to be loved. As parents to children with differences, we also want the same for our children as every other parent wants for their children. We want them to be happy, we want them to be liked and we want them to be loved.

I know that our kids are harder to understand than a typical child because they are different. At an MPS conference a while ago I asked a mom who described her nine-year-old child to be cognitively six months old what that looks like. I don’t know. But I want to know because I care, and because of my experience with Trey, I know this mother and this child have the same wants and desires we all do.

I can also tell you from experience that I have not met a person of any level of cognitive ability who does not respond to human connection. It matters if you try.

My point in saying all of this is so that the next time you encounter someone who looks different, who is doing something unexpected or even something you consider rude, before drawing the line between ‘us’ and ‘them’, consider their humanity.

Consider the possibility that they are doing their best. And remember that all anyone wants is to be happy and to be loved. We are all in this journey called life together. There is no ‘them.’ There is only ‘us.’

“Everyone you meet is fighting a battle you know nothing about. Be kind. Always.”


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Assistant Editor: Renee Picard

{Photo courtesy Deb Purcell}

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