Family Fail


General update:  Sheldon has been off schedule even more than usual lately.  I had started recording when he was sleeping and when he was taking his medications and I realized I was able to get him to take them very often.  We hadn’t had any big incidents and really we have notice the good to bad day ratio was about the same.  So we are trialing him off his medications.

Yesterday:

Sheldon doesn’t go out much lately.  There are few people that he is comfortable with and he would rather stay home.  I can relate to this since in general I would rather stay home.  In fact last night I wanted to stay home.  But it was my mother in laws birthday party.  My son even wanted to go so I wasn’t about to say anything.  I wish I had.

When we packed to go I thought about packing food for him.  I always pack food if I am unsure of things.  However, historically his grandmother buys a ton of food special for him and sends us home with bags full of his favorites.  So I thought it would be silly to pack food.  That was my second mistake.  I also thought about packing games for his PS3 but he was taking his laptop so I figured we wouldn’t need them.  Yep mistake number 3.

We get there and at first it is just my mother in law & sister in law.  This was all we were expecting.  That and his cousins who are like 7 and 8 who were playing in the yard.

We were having a nice visit but the wi-fi wasn’t working.  And they didn’t have any food that he can eat.  I think they may have tried by buying chicken but it wasn’t from a place he would eat from & quite honestly I couldn’t tell him to try it.

Sheldon was actually handling this very well.  We looked but apparently my mother in law didn’t have any games for the PS3.  She has the system but not any games because she apparently sent them all home with him. Of course.   This goes on for about a half an hour.  During this time we are also informed that more people are coming.  He mentions he needs something to do if more people are coming.  (yay him for being so mature and self aware).

A couple of people show up and Sheldon asks if he can watch TV.  He was told he could watch TV in the main room or in his grandmothers room and some how it is decided he could watch in there.  His grandmother tells him to just lay down in the bed.  It is a bedroom & there really isn’t anywhere else.

More people show up and my husband and I both assess that we need to leave soon.  We decide right after cake.  He just doesn’t seem happy and there are way too many people there.  He also hasn’t eaten and that just adds to his aggravation.

My husband and I are in the main room.  My sister in law is getting the candles on & Happy Birthday is sung.  Some where in there I hear one of my nieces yell “Your lazy” and giggle.  Now a chorus of little kids singing “your lazy”.  Their dad is standing right there.  I jump up and pat my niece on the head and tell her to be nice.  How I only patted her on the head is beyond me.  I had to push past her dad, who was oblivious to them.  (Really???!!) (At some point I did finally hear him tell his kids not to do this.)

Sheldon is laying in his grandmothers bed with his eyes close.  I take a deep breath and I start to shake.  Is he shut down?  If I talk will he blow up.  Shit, shit, shit.   I say the only thing I think might get an okay response  “Ready to leave?”  He nods his head and asks for his shoes.  I moved so fast.  I grab his shoes and signal to my husband.  He of course knows the signal because we have been here so many times before.  We have had some issues at his mom’s but not like this.  Not like this.

In fact I am pretty sure no one even understood because they were trying to offer me cake as I was getting his shoes.  I had no time or patience to explain.  I just knew I had to get him out of there.  I knew he had his eyes close to shut out everything.  I knew he was pretending to sleep because he didn’t know what to say to his cousins teasing him.  That if we stayed he would find the words.  They would not be nice words and he could easily have a full on meltdown.  The family has never seen him have a meltdown like that.  Because he was always safe and comfortable there.  I needed to get him out.  I didn’t want him to associate their house with a meltdown.  I didn’t really give a fuck what they thought.

In the car he kept his head down for a while.  My husband only commented that his cousins were mean.  My son wouldn’t go get food.  He asked to be dropped off and we could get him food.  I was so mad and sad.  Lots of wonderful people on twitter helped me to not feel alone.  Because really it was awful.

When I brought him his food I commented about how I was sorry they didn’t have food for him.  I got the “I know, right?!” 🙂 he is okay.  We discussed packing food & games for next time.  He is an awesome kid.

(And yes I think my nieces behavior was awful.  the fact that no one even noticed is so telling.  kids are mean & if they learn that is okay at home what do they do at school?  some day when feeling up to it I may talk to my sister in law.  although I don’t think it will end well.  No one has called to apologize)

 

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Comments

  1. I’m glad you all made it out of there in one piece. Your son did an amazing job of keeping it all together under such trying circumstances. You are so right in when you say that if that kind of poor bullying behavior by younger children is being accepted in family environments then how on earth are we to expect schools to be safe places for our unique children and teenagers?

    • Tom's Mom says:

      People don’t realize all the scaffolding that goes on behind the scenes, they don’t realize how hard our kids are always working, how much effort they have to make all the time to fit in with society. Every minute he interacts with others, our little guy has to think about keeping himself in check, he has to remind himself to go through the motions that make other people confortable interacting with him. If he works hard enough, outsiders don’t ever see the meltdown. People don’t understand, they just don’t know when they’re pushing it too far, how hurtful they are being and how bad it can get. We ask so much of our own children, who don’t have typical intuition and therefore have to consciously think about what they’re supposed to do – oddly enough, we don’t ask the same amount of effort from our neuro-typical children who don’t have to think twice about their behavior in public.

  2. Why are some kids innately mean? I don’t get that. Glad he didn’t blow. Hugs

  3. disabilityonadime says:

    Wow, it sounds like he did everything he could to make it work. Great job (and you guys, too, for that matter). Our relative’s kids are monsters, too. We don’t have to be around them much (thank goodness!).

  4. Wow! … not that I’m at all advocating violence BUT gee – I wonder if someone would have noticed if he’d gotten off the bed and clobbered the neices!!! … he’s very luck that you intervened JUST in time … but he also deserves to be congratulated for choosing a ‘shutdown’ over a ‘meltdown’ 🙂

  5. Goodness! I think I would have lost it on choir singing “your lazy” and the dad standing around. Good control there!! I am glad everything worked out and sorry that you all went through that. You all did remarkable!

    I am having these thoughts flood my mind because we are moving back to where I have many family members who have not seen Daniel since he was around three. They have not experienced verbal Daniel, or any shutdown/meltdowns (I usually took him out of sight before anyone could see. Anything they did see they assumed was just “throwing a toddler fit.”) and half of them don’t believe autism is real so that should be interesting. I hope I can learn to control my own shutdowns/meltdowns! 🙂

  6. I have had this experience. My daughter, Helene, does often care to leave home. And, so many times family does not understand. I know that moment when you can see him/her teetering right on the edge of the meltdown. It’s like a game of Jenga.
    Is the uncle your brother or brother-in-law? Can you talk to him about how his daughter(s) acted toward Sheldon? I know with my niece, I often have to remind her about Helene’s strengths and limitations – partly because of age disparity and partly because of Helene’s autism. My niece’s mother supports me in this, which avoids a lot of potential misunderstandings.
    I’m glad it worked out without a bad incident at Sheldon’s grandmother’s house. It sounds like he’s got some great coping skills!

Trackbacks

  1. […] sure what to say.  But in general there are issues of stress.  The last time we saw them it did not go well at all.  I never spoke to my sister in law about it but I know my husband told them.  In my […]

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