Tuesday, September 16, 2014

Mo' Progress. Mo' Problems.

Do you ever do this?  Your kiddo finally does something really amazing.  A thing you, the teacher, a therapist etc... has been working on with them FOREVER.  They finally do it.  You're in that sweet spot of being on top of the world over it and then BOOM! Along with this new found skill suddenly comes challenges and problems you could never of imagined.  Then you voice your frustration.  Be it online or with another parent who has a special needs child and you get a met with "Well at least your child can (fill in the bland with the skill of your choice)".  So then you get to juggle the feelings of excitement, frustration, and guilt all at once.  It's awesome! NOT!

Hey, I'm not looking a gift horse in the mouth here.  Progress is awesome but it far from perfect.  All feelings are valid but let me tell you something.  No one wins here.  No one.  There is no gold medal. There is no year supply of turtle wax.  No one pins a crown on your head.  Trust me if that was the case, don't you think I'd be rocking that look by now if there was?  Mama loves an accessory or ten. 

You see there is a double edge sword to progress.   It's not "Victory!"  and it's over.  All it's doing is introducing you to your next nemesis.  Allow me to share with you some of our progress and before you whip out that sad trombone to rain on my autism challenge parade, hear me out.  

Yes, the Kiddo is talking.  A lot more than he used to be able too. Don't get me wrong.  Having him be able to tell me "Want fries!" is a big improvement than just tons of screaming while I tried to figure out what the Hell he wanted.  However, I would say 90% of his talking is scripting/echolalia.  Really, how functional is it?  Not much.  He's probably almost always going to need someone to prompt him along in a conversation.  Otherwise he will be that adult you see one day having a conversation with himself.  Listen close, I bet you'll hear him quoting Lighting McQueen or Thomas the Tank Engine.    So yeah, I get it.  Your kid isn't talking. Yes, those feelings you have are valid but realize my situation isn't perfect here.  Especially when my kiddo is yelling "MONKEY BUTT" for 73935 time today.  

Great, he can tell time.  Yes, that's been handy.  Especially with getting up in the morning.  He knows the rule is he can't wake us up till 6am and he's been sticking with it. Even though I often wake to the sounds of him doing the countdown in the next room. (5:56! 5:57!)  However with this came an extra dose of anxiety.  If I thought he wasn't flexible about the schedule before, it's even worse now.   Trying to add something or change the order?  I bet hostage negotiators have an easier job than I do.   This ability which I thought would lesson his worry about the schedule has only made magnified.  

Your kid never wants to leave the house and would be content to play minecraft or video games all day.  Mine never wants to be home.  We are forever planning the next outing.  I am at least now able to schedule "home time" because he understands telling time like I said above.  However, like I said before, this is usually the kiddo walking back and forth in front of clock counting down the minutes till the time comes for the next outing.  Plus his running to get in my face to be reassured no less than 539 times that the next event will take place at the time planned.  Why yes, it's most restful.  I kind of wish he would get lost in a video game.  I know, I know.  What's this piece all about?  But honestly, you get what I mean.  I just want a break for a moment.  I would like him to play the Wii and me not have to dust it.  

My kiddo loves a party. Any gathering.  Going to some one else's house? Even better.  He's incredibly nosy and will look through all your rooms and stuff.  Now I love thinking the party doesn't start till we Fries walk in, I also know it's like walking around with a live grenade.  We're walking in blind to potential danger and triggers.  I'm not really sure what might set the kiddo off and then I find myself pulling a move out of his book with one eye on the clock, counting down every minute.  Finally when enough time has passed for it be socially acceptable to leave, I think we are all kind of relieved by that it's over.  

I know I should not complain about what he can do anymore than I should about what he can't.  I'm not perfect though and I find a good whine now and then is good for the soul.  Just remember that before you jump on my case for complaining there is probably something your kid has done recently that brought you joy and then new pain.  


  1. My little guy is only 3, but I'm already starting to sense a pattern of being really made up with a new skill, just to realise a new annoying behaviour will be accompanying it! haha ;)

  2. I am reminded of when my darling boy finally mastered opening doors with the round doorknobs. Yep, took him six years of prompting and practice and coordination. And now he can open any door in the house. Mixed blessings.

  3. I always say it's like the whack a mole game. Whack down one behavior and another pops up.

    My kid talks too. Nonstop. But it's a choice: 1. a monologue on a past event rehashed 1,000s of times or on the latest favorite topic (delivered by pacing in quick figure eights around the targeted listener, stopping only to demand "ARE YOU HEARING ME?") or 2. yelling "Squirrel!!!" randomly and following up with scripted nonsense chatter involving squirrels.

    We have the 6am rule too. I got that one clicked in a few years ago when she was 4 and I was DONE having to get up at 3:44am, 4:37am, 5:16am, or what have you. I printed out a digital font 6 and pasted it next to the hour number on the clock and told her the numbers have to match before she can get up or no tv the whole day.

    We also have the frantic to leave thing going on too and have to know what time everything will happen, which makes relaxing on weekends a thing of dreams. Is it time to go? Is it time to go? Is it time to go? She's dressed for church by 6am but our service isn't until 11am, etc.

    And yes, she's very high functioning so I'm constantly reminded by others that at least she can....yeah yeah yeah. What few people understand is that because she's high functioning and has survival skills so fierce she can make herself blend in, all that makes her really vulnerable because she doesn't always receive the level of supervision she needs to keep her safe and the expectations are higher so that others will hold her to higher standards that she can't meet, which makes the failures a harder fall, for both of us.

  4. I always hate that "at least your kid can do..." line. Yes I am gratefull my son can talk but why does that mean I can't be upset that that my son can't be in a full classroom for the day or be go to a street fest with out me in fear of a meltdown.
    It's amazing how sometimes those in our own community can make us for guilty for the good things.

  5. OMG sounds so much like me & my son!! I totally get it honey. Sometimes you have to vent.

  6. This, "Mine never wants to be home. We are forever planning the next outing." - weekends for us. Often, it's a huge process going out, but once we are out, he never wants to go home. Going out costs money, at least where he wants to go it seems. Going out requires certain conditions. Going out is energy-consuming. Mommy is kind of a hermit, honestly too. Also, when home, my kid also can't just play on his iPad or watch TV totally on his own - he wants constant company, he is unable to navigate his iPad for long along & often gets frustrated with his apps & needs help to get from point to point.