Let me tell you about anger, defeat, pain.
….when you get told by a key player in your Autistic kid’s life (who you love) you need to do token charts and reward systems and beans in jars…. and implement “all of these strategies because literature shows it” and try all of these things just as suggested (even though in MY opinion and pediatric neurologists and physicians across the countries opinions who say that cause/effect and reason in a child who literally does not have a fully developed frontal lobe that makes these decisions) – and to keep going even though In REAL LIFE, it doesn’t feel to be working. And to hear the words “I know it’s not as easy as giving a pill”.
This was In response to Ben’s physician ordering medication to control his impulse and risk to himself and others.
I want to freaking scream.
Deciding to give a pill to my four year old is NOT easy. Nothing easy about it. It’s actually one of the hardest things I’ve ever had to do in my life. And I still haven’t decided it’s what will be the best for Ben.
But you know what else is not easy? Living with this. Living with this bullshit every freaking day. Living with a kid who hurts you, who hurts himself, who hurts the dogs, who can’t thrive in school, who can’t thrive at home. Who screams, who takes his clothes off no matter where he is bc they “hurt him”. Who cries because things are too tight or too lose or too loud or too quiet. Who doesn’t sleep. Who can’t sit still. Who screams when you go out to eat or go to the grocery store. Who runs away from you. Who you fear you may lose bc he is fast and sneaky. Who you can’t go to the bathroom without locking the lever latches at the top of the doors because he’ll escape. Who calls your name every five seconds bc he has such severe separation anxiety – that appears to only be situational and came out of nowhere. Who is delayed in motor skills, pragmatic speech skills, social skills. Who tells you they hate you. Who won’t hug you or kiss you even in Times you just want to feel you need a normal kid to love on. Who I can’t leave with a sitter other than select family bc people don’t know how to deal with him or keep him safe. Who I have to apologize to his bus drivers when they tell me “he’s screamed the whole time” and you can clearly see the look of disgust on their face. Who you go straight to the notebook of every day when he gets home from his special ed class – fearing what the teacher wrote which normally has “started off rough” and knowing how hard it must have been for EVERYONE.
And I then, you know what else isn’t easy- having to keep stupid freaking spreadsheets and checkboxes of the level and duration of every freaking meltdown which you don’t even do half of the time, because the behaviors that are “unacceptable” are 99% of the time and the only time we MAY get a break is when he is in front of the TV – which YES, I use as a babysitter bc it’s the only freaking free minute I get to freaking breath.
I’m so freaking over it. I’m over the charts. I’m over the apts. I’m over the stickers and rewards that don’t help. I’m tired of saying “use your words” “it’s okay”. I’m tired of being hit. I’m tired of holding my other kids who are getting hit. I’m tired of constantly watching and waiting for something to happen because it always does. I’m tired of being tired. I’m tired of Autism and I’m tired of my 4 1/2 year old being controlled by this shit-developmental disease.
Level 1, 2 or 3. “Worse” or “better” in some areas. High functioning or low functioning. Verbal or non-verbal. Even those who see and deal with it from the outside – get to escape it. It’s Not their responsibility 24/7. It’s not their worry that someone may bail out when you need them the most bc the going gets tough. I don’t have that. I can’t escape. I always have to hear it, to see it, to hear people’s opinions on my discipline or lack there of – how he’s fine in some ways and not in others. Whose fault it is. It’s mine forever and I have no idea how it will work out. I don’t get to turn him over to someone else. I don’t get to “clock out”. I don’t get to escape it.
Today, Autism:1, Kristen:0.
And it freaking sucks.
So, the act of crushing a pill – which ironically won’t even even be easy to do and administer to my kid – may seem easier to some. A quick fix. It’s NOT EASY. It’s just another grasp at straws to try and function in a life which hurts to live these days.
NOTHING I deal with every day is the easy way out.
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