There are moments through this autism journey that will test a parent’s strength and emotional well being. These moments will also touch upon this spot in our heart that is soft, delicate and extremely fragile that we as autism parents have mended back together time and time again. This part of our heart was initially broken the day we received the diagnosis and through the years we learn to persevere and mend our broken hearts so that we can remain focused and strong for our children. My fragile spot on my heart cracked a bit tonight. As I was brushing Avah’s hair I said excitedly, “only a few weeks left of school and then Summer!” She looked up at me with a smile and said, “Summer Camp?”. As I began to say, “No, not this year” she begins to say, ” Science Camp, make slime?”. She was referring to last Summer her week long camp at MOSI. She finished out the week program but after that week they felt it wasn’t a good fit for her because of some of her behavioral needs. In her mind she had a great time at camp and loved creating things there. If she didn’t, she wouldn’t be asking me a year later. However, they thought differently. At that moment, that spot in my heart began to ache and crack once again. “Damn you autism” but most importantly, “damn you society”. I so badly wish people could see past her autism and the difficulties it brings. I so badly wish people could see Avah the way I see her. Most importantly, I wish people would give Avah and others with disabilities at least a chance! I’m not saying it will be easy, it will be trying at times BUT it is so beyond worth it. Just give them a chance. Work through those challenges and give them an opportunity to at least show you their true self when they are in a understanding environment. So here I am weakened by my hurting heart. The only thing I could think to say is, “Avah, people suck and sometimes they don’t understand”. I’m not sure if she understood where I was going with my comment but It just came out. I kept brushing her hair and changed the subject to her upcoming surfing event. Once again, the spot in my heart is on the mend but will soon be healed and tucked away until the next time autism life rears its ugly head. ~ Adrian
Many children, autistic or not, have those moments of screaming, crying outbursts. Tantrums are not fun for any parent, especially when one of these melt downs happen in a social setting or public place. What makes an autistic tantrum that much worse is the child’s inability to verbalize what is wrong and what can be done to fix the problem. For many autism parents, like me, through the years we pick up on things or scenarios that may provoke one of these nasty tantrums to arise, so we try our best to prepare ourselves and children. Even more preferably avoid them all together. However, there are times that we cannot avoid them from happening and must endure the wrath. My daughter, Avah, is famous for the high-pitched blood-curdling screams. It literally makes your heart stop for a second. She like others on the spectrum also has tantrums that may involve throwing themselves on the floor and then stiffening their body making it virtually impossible to pick them up. Some outburst may also include kicking, screaming, biting and self-injury like behavior. No matter how many times we see the ugliness of tantrums what makes it even worse is having all eyes on you wherever you are. Feeling like an animal at the zoo with onlookers staring, as a parent you can’t help but wonder what the people are saying to themselves. It makes me want to throw my own tantrum and yell, “She’s autistic” and storm off.
Now I know the saying, “you shouldn’t care what others think” but let’s be honest. As people, in our society, we do! Parents do not want to be judged on something that is not within our control. We do not want to be seen as a bad parent or our children considered brats. For me, and I think autism parents would agree, our children’s tantrums are misunderstood. What I mean by that is autism isn’t easily spotted. Unless you really know the child or know what some of the autistic behaviors are there is no way of telling them apart from a neuro-typical child. So to the unknown eye staring at us and our kids rolling around on the ground, they seem to be your average, misbehaving children who need discipline. Maybe sometimes that is true because they are still children however, most of the time children with autism are screaming and lashing out because of sensory issues. It could be too loud, too bright/dark, or too crowded. They may not like the song, movie, or TV channel choice. The different smells in the food court at a mall or someone around them wearing too much perfume or colgone bothers them. Something that seems small and trivial to us, is huge and overly-stimulating to them. Any of these sensory issues or change in daily routine could ignite a tantrum at any moment. So the next time you see a child having a melt-down remember this post. I ask before you cast judgment that you try to remember there may be more than meets the eye. The child may not be screaming and causing a scene to be defiant they may be autistic trying to communicate the only way they know how.