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Tuesday, May 24, 2016

"I just want to be able to have a conversation with my kid."

 The longer I raise him, the more I realize that having a Kiddo that can talk doesn't mean one that can successfully communicate.

As the school year is wrapping up, old behaviors are coming back. With a vengeance and I would not be keeping it 100% if I didn't admit that they are really, really, really, working my last frayed nerve. We had a time of "WTF Wednesdays", as I called them. The school did the whole FBA workup. We observed things from every and all angles only to really just figure out he just didn't like the schedule that day. He also wanted to rush through the school day to get music therapy which is after school and his favorite after school activity to do. Behavior plans were written and carried out and with time the behavior started to fade. HOORAY!

Or so we thought, because it's like someone flipped the light switch on this kiddo and we are back and this time it's personal. Seriously, Kiddo went full on Spinal Tap and cranked his behaviors to "11". (If you don't get that joke, we can't be friends. Go watch it.)  He's now gone past the usual screaming and crying to full on meltdown. (Now with new and improved throwing of furniture and classroom materials!)

It's also from the minute he opens his eyes on a Wednesday morning.  Walking on eggshells getting him ready.  Lots of crying and whining at the bus stop and me just hoping like Hell I don't see the school phone number on the caller ID. When he returns, he's better because he's about to go to the thing he likes.  By Thursday, he is a 180 Kiddo.

Today he decided to beat the holiday meltdown rush by starting his "WTF Wednesday" on a Tuesday.  It's like one of those Preview Sales before the One Day Sale at Macy's.  (Which, did you ever notice they do those once a week? Oh, I could use some new sandals. Hey, maybe I could swing by there and....STOP!  Focus Mama Fry!)  I don't know what it was about reading about all this in his notebook today that got me down but man, it just did! Like sonofabitch!  Here I was just hoping we could just coast out those last few "WTF Wednesdays". Power through them.  Just get to middle school, which starts in summer.  We'd be in a new place, new routine.  We could kiss the "WTF Wednesdays" goodbye.

But autism had to be like "Naw, Girl. We may like a routine but we are not always predictable!'

I sit here thinking "Is this going to slowly spread to taking over more of his week at school? So more and more of his last weeks of school will be nothing but dealing with this.  Is it because it's the last weeks of school that he's doing this? How do I get him to understand that we all get he's feeling anxious? How do I get him to say what's wrong?"

Ask him what hotel room number we stayed in five years ago, he can tell you that.  The birthdate of a dog that passed away four years ago, that too. Rattle off the start of any scene in The Polar Express and he will out act Tom Hanks recreating it line for line in front of you.

Ask him "What's wrong?" He can't tell me.

I just want to be able to have a conversation with my kid.  It's as simple as that.

I'd probably ask "Watching lawn mowers on YouTube. Let's start with that. What's the appeal?" 






11 comments:

  1. I wish that I had something amazingly supportive and comforting to say to you. I don't. But you did help give me a very important glimpse into a day of a parent whose child has autism. Thank you for that.

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  2. I have 4 kids, two confirmed with autism, one awaiting diagnosis, and a newborn. There's tons of interaction between them and with me but not a single conversation. It's mostly just them chasing each other around pretending to be cats or yelling that a toy is "mine!!" So true about them being able to recall crazy facts but not answer any kind of open ended question. I would love to be able to have a conversation with one of my kids someday, but I'm almost afraid to hope. I think what makes it even harder is that my husband that took so many years to even accept that our kids have autism at all is now taking years to accept that it's actually a disability. He insists that one day our oldest who only learned to answer yes/no questions 6 months ago will have a job, get married, and lead an independent life. I guess anything is possible, but it just feels like such a pipe dream right now. The college savings account he started for them is just as likely to be used to pay for long term care once we are too old to care for them ourselves. Anyway, thanks for creating a community that understands the struggles.

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  3. Thanks for sharing and making us laugh. It is so frustrating not having a conversation and knowing what is wrong with them. My son had a fractured tooth that came out this week, we have no idea how the tooth got cracked.
    Love the lawn mower video - we watch endless hours of car washes and escalators.

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    1. Your child must have the same play list on YouTube as we do. Escalators, car washes and automatic hand dryers. Happiness for my kiddo is a trip through the automatic car wash.

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  4. I have EXACTLY the same problem with my 6 year old son AJ. I can ask him any question about the human body, space, math, anything from BrainPop or Magic School Bus (basically anything educational or factual), and he tells me right there on the spot. I ask him how he feels about something or a why question, he just stares at me and gets all worked up and emotional. It's so hard watching him struggle with something so basic, but how does one explain abstract concepts like emotions and reasons? It makes ME want to start rocking or bang my own head out of overwhelming frustration and helplessness. So yes, Mama Fry, I get it. Being verbal doesn't necessarily mean he has effective communication skills.

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  5. I have had to carry my youngest son(6) to the bus several times this year. Sometimes, because I won't let him carry a fistful of playdough in his pocket. And while he does this my oldest wanders out into the front yard, staring at the sky while cars start to form a line, waiting for my three boys to get on the bus. My middle son might decide to start eating dirt at that point. Sometimes getting on the bus is half the battle.

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  6. I feel your pain. My kiddo has end of the year anxiety too. When he was younger, the entire last 6 weeks of school was a living hell. Every. Stinking. Day. Occasionally, I would get a message by phone or note that he had a rough day. The rough every day was always at home. Thankfully, he has outgrown most of it. There is hope. My son still has some anxiety at the end of the year (though he says he's not anxious. Trust me kiddo, I've lived this with you and you've been doing it for years. Mom kows) but it's lessened. It can happen. Hang in there. Margaritas at my house!

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  7. I feel your pain. My kiddo has end of the year anxiety too. When he was younger, the entire last 6 weeks of school was a living hell. Every. Stinking. Day. Occasionally, I would get a message by phone or note that he had a rough day. The rough every day was always at home. Thankfully, he has outgrown most of it. There is hope. My son still has some anxiety at the end of the year (though he says he's not anxious. Trust me kiddo, I've lived this with you and you've been doing it for years. Mom kows) but it's lessened. It can happen. Hang in there. Margaritas at my house!

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  8. I am just grateful there are blogs like yours out there that I can go to for a shared experience. There really is comfort in knowing you are not alone in your struggles.

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  9. I'm kinda similar. I can recite facts about things that I like but it's hard for me to have a normal conversation. There have been times when my social skills improve a little bit but I eventually return to my normal levels or get more withdrawn than usual and/or prone to meltdowns.

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  10. It is so difficult to know what's wrong or upsetting for my son who is non verbal. My wife often has to jump in and CSI the situation. And there are times when we just have no idea. I'm terrified of the time when there will be something really wrong and we can't figure it out until its too late.

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