Behind starburst eyes

There’s Always A Reason

During a pandemic isn’t the most obvious time to decide one is going to start working on a trailer and planning a trip across the Americas.

While yes a part of the reason is definitely because we couldn’t go on our grand adventure across Europe, another part was the lump I found on my sternum. I needed something to focus on while I waited for results.

While many people equate Autism with a certain amount of social oblivion, where my boys are concerned momma being upset sets off alarm bells real quick! Couple that with this pandemic already having them more anxious and the inability for me to go off from them for awhile while I process and you’ve got the potential for a whole lot of additional stress and meltdowns on their part (totally warranted mind you!)

So instead I focused on the trailer and creating a sanctuary for the kids and I to have. For a place to make memories for years to come as we adventure together, because the alternative wasn’t something I could afford to focus on in such close quarters with them.

With all the additional medical precautions in place for Covid, getting a diagnosis wasn’t as quick as I would like. It took over a week to be able to physically see my doctor, another 2 weeks for the ultrasound, and then a week and a half for inconclusive results. My actual sternum is inflamed and swollen, so I was prescribed an anti-inflammatory for rheumatoid arthritis to see if it helped to decrease the swelling and then an appt with radiology 3 months from now to look at it again. ūüė¶

The idea that I should just sit around and wait 3 more months to see what exactly it is because most medical procedures that aren’t for Covid or for immediately saving one’s life is so disheartening and makes me wonder how many people aren’t getting timely treatment because our government cut funding for hospitals too much for too long and so they can’t handle both right now.

The bright side is that the pain is less with the medication and I think the lump is smaller so fingers crossed it actually is shrinking, and isn’t potentially life-threatening.

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Discipline will fix it

I was told many times when my eldest son was young that there was nothing wrong with him. I was told that instead the issue was actually my parenting. I remember one time in fact that I was at a friend’s house and he was having trouble getting to sleep. He’d gotten scared and it ended up taking me just over two hours of laying with him, cuddling him and singing to him to get him to calm down and fall asleep. Upon re-joining the rest of the adults around the campfire that had been built, mentally exhausted, aching inside for my sweet boy who just couldn’t deal even when he WANTED to, I was verbally attacked. Honestly there is no other way to describe what happened.

I was standing there not speaking to anyone specifically when this person started in on me. Screaming at me that I needed to stop baby-ing¬†him, that he was never going to learn how to deal with the real world because of how I coddled him. I was told that if I would stop¬† him, treat him the way the real world would treat him he’d be “better” This person decided that how I raised my son was totally unacceptable. One of the things they said was that they were simply being honest by telling me what everyone there was saying behind my back. That part still strikes me hard 5 years later. Why, because these people were supposed to be friends, they had seen myself and my son for a long time and yet still there I was being screamed at about my abject failure in parenting my son. Not only that, but instead of concerns being voiced in a kind manner, there I was being centred out to be told both how terrible I was as a mother and that this was thought by all those that were there and they had apparently been speaking about this behind my back.

Finally, with tears in my eyes and my heart breaking at the random viciousness of this person’s words I stated, how about we talk about him like he’s just like “_____” which was the child of another person that was there. I stated that he was just like them. After all there was another child there that had it as well. It was then that the light dawned on my attackers face. Quickly I was encircled in their arms as they tried to apologize, telling me they had no idea he had Autism as well. It didn’t make it better. It didn’t make it hurt less that they were now saying they were sorry. It didn’t make the embarrassment at being centered out and told in no uncertain terms that I was a terrible mother easier to deal with. I stood there still and stiff wondering in my head when they would finally release me so that I could walk away from them physically as well as mentally to re-coup.

I had not told any of the people there before that moment because I didn’t feel like I needed too at the time. I naively thought that because he was my son and a beautiful person on the inside that it was enough. That he could just be himself and be loved and accepted as the bright, shining, sweet, individual he was.

I still see this person from time to time. They still swear that they were only being helpful by voicing what everyone else was thinking. That they think I’m a good mom now that they understand my eldest has Autism. But in thinking about the past, I can honestly say the memory of that night still hurts. I wish for a greater understanding of Autism in general so that other parents will not be subject to uninformed tirades such as the one from that night.

I’d been subject to other tirades from other people both before and after that incident, but that one was one of the hardest because it wasn’t from a stranger. The ones at the stores or parks I can brush off after a little bit, I can inform that stranger about Autism, and explain that it’s not what they think. Sometimes they simply walk away after I’ve said something, sometimes they argue with me, but always they are nameless people who¬†theoretically I don’t have to see again. It’s easier that way. It’s oh so much harder when it’s people who know you instead.

To be perfectly fair, they were not the only person that knew me that had said things like that to me. My own family fought me tooth and nail about my parenting and my son because in many of their minds he was simply a willful brat that was all too often given his own way and coddled and spoilt. I was over-compensating for being a single mother by giving in to him and not disciplining him in the ways he needed to be a “good” and “well-behaved” child. Just like that person the views changed once I had an official diagnosis. That fact should bring me comfort, that NOW he’s accepted by those that know me because they also know a doctor has stated that he has Autism. But when I look at my son, I don’t see Autism, I see him. Just him. I see his smile, his starburst eyes. I hear his laughter when I tickle him, and his off-key singing when a song comes on the radio that he likes. I watch his body move and flow when he dances as if he were made of liquid sound. I watch the rise and fall of his chest as he sleeps cuddling his baby brother who often crawls into bed with him in the middle of the night. I feel his frustration about his printing when he writes to his pen pals, and I feel his excitement when his baby sister smiles at him. I know of the meltdowns, I live through each one with him, holding him, telling him he’s loved and safe, restraining him as gently as I can when he’s trying to self-injure. But I know of ALL of him, every single piece of him, and his Autism is not who he is, it’s just one piece. Just as being a big brother is not all that he is, or having starburst eyes is not who he is. They are all just parts, that together make up one of the most incredible human beings I have ever had the joy to know. But it’s even better than that, I don’t get to just know him, I get to live with him every single day, experiencing all the highs and lows of his life with him, and being his mother is more amazing than anything. If I had disciplined him more as I was originally told to do, some of his beautiful light would have been dimmed, and that would have been a tragedy for me, him and the rest of the world that would have missed out on so much beauty and light that pours out of him every single day.


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