Tuesday, August 19, 2014

Two steps forward, one step back.

"Hon, we need to talk about Kiddo.  I think we have to call the doctor.  Maybe discuss medication changes.  Or consult with a behavior therapist..."

I have the same exact conversation with my husband this time every single August.  Summertime regression has once again reared it's ugly head and I'm really thinking I need to be smart and apply for next August off so I don't have to watch it again.  The plot just does not change at all. I'm really tired of being exhausted, worn out, mentally drained, spiritually crushed and heartbroken. Because it's every damn summer.

I know. I know. School.  Change of routine. All this time off.  The start of tween years and the angst that comes with it.  Yadda, yadda, yadda, I should not be surprised.  Knowing all of this makes it no better.

We decided to do a little road trip.  Clearly the husband either got me drunk or struck when I was having some "autism amnesia" to agree to this after the "Hottest week of June on record and a car air conditioner that died incident".   He sworn it would be fun.  He sworn he got the car fixed.  He convinced me that it would be fun.  That it would be a break and something to do with the long rest of break ahead.  I wouldn't have to cook, clean, do the therapy juggle and keep the kiddo entertained for a few days.  Plus I started see all the folks in the my circle do their own end of summer quick before the kids go back to school plans and I was all "Me too! Me too!"

The drive here wasn't too bad.  Six hours long and only got HELLISH the last hour.  OK I could almost deal with that but every car ride since the Kiddo has been stuck on HELLISH.  He doesn't want to leave the hotel room which kind of defeats the point of getting away when you don't go further than a single room.  He's not eating very well if at all.  We had a really good period of introducing new foods and he was really getting better.  This has come to a screeching halt.  I just sit there thinking about all the time and money we've spent on feeding therapy.  Did this just send it down the drain?

He's scripting like crazy. Beyond the usual for him.  He's just not very present and it's like pulling teeth to get him to have any sort of functional language exchange.  I don't expect a spirited debate about the 2016 presidential election but hearing nothing but mixed up random bits and pieces of words strung together non stop is making my ears cramp.

I think the final straw for me was tonight in the hotel pool.  Trying to wind him down for the night and he's literally pacing in the water.  Pacing in general is his thing.  It's his way to cope with the world.  I don't usually care when he does it. He's regulating himself.  However seeing him need to do it in the pool, that sent me over the edge.  The pool is his happy place.  The fact that he can't even feel relaxed in it breaks me.  I am kicking myself that I have even taken him on this trip.

Now do I just hold on for the next few weeks?  Get him started with a full day of school in September where we have that beautiful long stretch of school till about early November without any breaks.  We make a lot of progress during that time.  We always have.  I have to hold onto that fault.  Of course the other half of me is thinking is some of the progress we will make just be getting him back to where he was before he slipped back.  I feel like I'm dancing back and forth with him all the time.  Do I call the doctor?  Do I call the caseworker?  Do I call my own doctor and get my own medication adjusted?

One more day here.  I suspect it will be loads of preparing him to leave the hotel.  Then we will run through a historical place at a breakneck speed.  We might get him to stop for five minutes and eat a cookie if we are lucky.  Then will start the daily meltdown/panic attack to return to the hotel ASAP.

This vacation stuff, who's it suppose to be relaxing to again?


  1. We just never took vacations, except for one. It was not great, but not as bad as what you describe. Then in teen years we tried a couple. Building social stories with iPad helped SO much, but our girl is 16 right now, so your mileage may vary.

  2. I so feel you right now. My mom and I took my kiddo and his cousin on a one night overnight up north last week....and it wasn't pretty. August is so very tricky and tiring and mind numbing. I understand. I completely understand so much of what you wrote. Thanks for writing.

  3. I've always seen a 'regression' (not sure if it's an actual regression, but I've always called it that) after a trip away. It's a nightmare and I feel your pain. The only thing I can say is get back to routine asap. Get that whiteboard out and write a schedule every day. We went through one of these regressions recently and I thought 'this is it! we're never getting her back again'. I thought I'd lost her!

  4. The whiteboard idea is genius - even when on vacation. I have found with our boy that mapping out the schedule before hand and referring to it regularly while on vacation helps. It doesn't eliminate the issue, but it helps. Good luck! :-)

  5. I had to leave Jersey Boardwalk early yesterday because he could not tolerate the popping balloons used for arcade games...he literally melted down...won't wear earplugs...I felt so bad for his brothers

  6. I gave up on the idea of vacations once I had kids with autism. I cannot even fathom how it could be worth it if your intention is to have fun. We travel to visit family, and that's it. We stay in family members' houses holding our kids while they shriek and hit and panic and terrify their cousins. That's the closest we can get to vacation with autism.