I haven’t written in a while. Life is amazingly busy and overwhelming and sad and exciting and forward and backward moving all at the same time. This Autism life isn’t for the weak of spirit lemme tell you. And as the boys get older things are changing. The rigidity and refusal to step outside of their comfort zone is increasing. The more they are becoming very solo in their day to day. They have their moments with one another or friends at church, but their interactions with other kids and grown ups are shorter and shorter as of late. They are happy being alone with their action figures or books or kindle. In their own worlds. And I am lucky that they let me into their world, even if only for a few minutes a day. What I mean by that isn’t them talking at me. They can do that for hours on end. Telling me all about animals and volcanos and “gidget” spinners, that happens daily. I am talking about telling me how they feel, or what they need. Those are conversations that rarely happen without a fight. An emotional fight. And it hurts. It hurts my heart and my mind. It is exhausting trying to explain it to people that are part of our world.
My world lately feel like all I do is negotiate with terrorists. Over food, or kindle games or wii games or how we play with dinosaurs. And then the other is always having to explain what position we are in with the kids. The changes that have happened from last week to this and to be told its fine, when it isn’t. Or told that they don’t see the problems. Yeah, because for days before wherever we are we have had no less than 12 conversations about what is going to happen, how we have to behave and what we need to do if it is too much.
I thought, because I am dense, that post potty training would allow me to stop carrying a suitcase for a purse. But no, I now have to keep emergency food and noise canceling headphones and sunglasses and kindles with me just in case. Because we might be at Target and everything is too loud or bright or red that day and they can’t turn off the sensory input of the store, and I really need shampoo.
And this is life. And this is normal for us. And guess what, it sucks. It sucks to know that when it gets to a certain temperature I have to be cautious about taking them to social functions because the heat hurts. Because if it’s too hot the sun hurts. Because 2pm might be recharge time that day. And there isn’t a damn thing I can do about that. I have no control. NONE.
Every parenting book and person with a child without special needs talks about “having and holding control”. I can traffic direct and attempt to do damage control, but I am in no way in control of the following things:
seizures, sensory overload, meltdowns (which include ugly words, having things thrown at you, being hit), not sleeping, not eating, not being able to find words.
So you breathe through it, and cry and walk away and try to not engage the behavior but also have to make sure they don’t harm themselves. That is getting harder now that they are getting bigger. So I feel like a failure almost daily. Because I do yell and I cry and I can’t control the ugly that comes from something being wrong and my kids not being able to tell me what is wrong.
My spirit is crushed any time I hear a kid years younger than mine perfectly communicate anything to their parent. My heart is crushed when kids want to do crafts with their parents, when they want to go see characters from shows, when I see kids doing kid things that we can’t. And lately this has been harder. And I hate it. And I hate me for hating it.
But it is what it is.
So that’s life lately.