My 7 year old son has CTD and Autism. He was diagnosed with CTD January 2012 and then Autism, September that same year. At 1 year of age his symptoms began to be quite evident. By 2 years old, they were in full swing. At 3 years old, when he received the Autism diagnosis, our lives had been literally turned upside down – shaken – and the contents of our ‘lives’ strewn about in our home, with only my husband and I to pick up the pieces and “carry on” with things. In 2011, (pre-diagnosis) Spiro was 2 and I took a one year leave from my work to manage his needs. In 2012 I had to return to work part-time. Obviously our family, friends, and neighbors knew about Spiro’s diagnosis. But there is ‘knowing’ about a diagnosis and then really knowing. A few years ago I met a special needs mama, and she politely termed it, “those who get it”. And I don’t think anyone can get it unless they live it. Does our family that we see on weekends get it? No, I don’t think so. Do our friends? No. Do neighbors? No.
I don’t think seeing me out and about with my kiddos in the community, on our walk to school, or at an afternoon get-together gives an accurate picture of the effort that is our lives. The stress and daily emotional roller-coaster ride of having a child with CTD and Autism can be tremendous. Which brings me to this week’s topic: ‘those who get it’.
I’m not sure how this one moment in time popped into my head, but I believe that it was the summer of 2013. Spiro was almost 4. Spiro’s Autism symptoms and therapy schedule were in high gear. I worked every other day in order to facilitate Spiro’s therapy. I’ll always remember this one day in particular. It may originally have been with contempt, but now I try to use it to help my heart.
It’s a weekday, my husband has a day off and we have all the kiddos. As I recall, it was a beautiful sunny day, and I suggested that he take Spiro to therapy so I could take the other kids to the park for the morning. This park was across the road from our house. We hardly ever get across the road to that park. But on this day, I pack up my 2 typical kids, and off we go. When we get there, one of my neighbors is there as well with her 2 kiddos. The kids are playing, and I begin a casual conversation. As we are talking, my neighbor says, “I’m surprised to see you- I didn’t think you were a park person”. Hmmm…. ‘I didn’t think you were a park person???’ Now right here, is a perfect example of not getting it. Knowing that someone could be in such oblivion to the weight of my responsibilities to my child was hard to hear.
Now this could very easily turn into a bitter outpouring on why in 2013 my life was literally not a walk in the park. On how my son could hardly tolerate a trip to the park. That going to the park absolutely exhausted him. That he couldn’t handle the heat. That it is extremely difficult for me to keep him safe at a park. That my son has sensory issues and sand is his kryptonite. That it’s so hard to labour through a park visit to only endure the meltdown when we get home. Not to mention the fact that we are almost always at therapy, so our attendance at the park is not on our to do list.
But I’m not going to end the post like that. Sharing this shows that wherever you go in life, you are going to encounter those who don’t get it. They will say whatever is on their mind, and to them it’s just another sentence. And sometimes hearing that sentence uttered, or even the vague feeling you get around people, is just like sticking a dagger in your heart. And that dagger will remind you of all the reasons you aren’t that carefree park person.
So to end this, I want to say that as special needs parents, it’s not always our job to explain the weight and responsibility of our children to the world. It wasn’t on that bright sunny day at the park. It may never fit into casual conversation. But the comments of those who don’t ‘get it’ will one day find their way into your circumstances. And when that happens, I want to remind all of you, that instead of getting angry and bitter, we need to make sure we put on our armor so to speak. Those comments may happen, and if they do, take that deep breath, perhaps look at your special child, and protect your precious heart.
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#CreatineDecoded is a quarterly educational essay series that sheds light on research relevant for Cerebral Creatine Deficiency Syndromes (CCDS). The essays and interviews feature community contributors, often parents, who with the help of the ACD, explore in their own words the CCDS science you want to know more about.