Waiting for the Phone Call…

We had a bad morning. G was in one of those moods that reminds me of a teapot, water slowly heating and boiling, building pressure until the teapot is suddenly screaming. He was never outright defiant but instead would do everything I said to it’s most annoying extreme. For example, he selected his snacks for the day – two prepackaged bars and some cheez-its. He put everything on the counter and stared at me. When I reminded him that he is responsible for bagging his snacks and getting them into his backpack, he pulled out the baggies and deliberately put everything in bags. Including the prepackaged snacks. Then he stared at me again, as if daring me to comment. As I told DH later, I decided to leave the battlefield instead of waging war and retreated to my room to get dressed without comment.

Before we left the house, I told G to collect his boots and coat. He apparently thought I should do that for him and that doing it himself would make us late for school. He then set out to ensure we would be late for school so he could say, ‘I told you so.’ He walked sloooooowly to the car, huffing and sighing the whole time. When he was buckled and were leaving the driveway he tried to actively pick the fight he had been trying to provoke. I firmly (very, very firmly) told him we would not be talking about it, we would be having a quiet drive to school. I was hoping the silent break would calm and reset him. Instead, it just turned up the heat under the teapot.

When we got to school (on time) I reminded him, as I do every day, not to crowd the door where students wait for the first bell to ring but to wait in a less crowded spot. This keeps him from bumping kids or getting mad because he was bumped, as he still misinterprets this social situation and thinks it is deliberate. G responded by going to the extreme other side of the room. I thought that was great until another student got too close and G started yelling at the student to get away. I quashed that quickly and G went back to giving me the silent treatment – because I had told him we would be quiet on the way to school and he was still holding me to that statement.

I did my very best to detach and disengage and was outwardly successful. But now I’m sitting here waiting for a phone call from the school telling me G rocketed out of control. Maybe he will and maybe he won’t, either way I can’t seem to put it aside and enjoy my morning. Which means that if he does get over his mood and have a good day, I’ll have spent my entire day in a useless state of high anxiety. Some days, I just can’t win.

Published in: on January 30, 2012 at 10:31 am  Comments (2)  

Motives Vs Methods

There is a series of posts at the Thinking Person’s Guide to Autism discussing the role of parents and self-advocates in the disability rights movement that is quite fascinating. I have opinions, but not particularly passionate ones, so the debate in the comment section has been both clarifying and thought provoking at times.

In particular, there is a post written by a woman with autism who discussed how it made her feel to realize her parents had stacks of books about parenting just for her and how she felt going to various therapies. It contrasted what her parents were doing with how it made her feel. It gave me a lot to think about in the context of a conversation I recently had with G.

We were at the dinner table, discussing an incident at school that day. G was at recess when the teacher started calling kids to line up. G ran for the line and passed a boy who was sitting on the ground, still playing. G told him it was time to line up. The boy, who hadn’t heard the teacher, refused to comply and continued his activity. G, who becomes intensely frustrated when the rules aren’t followed, kicked the boy in the head. Hard. Like the boy’s head was a soccer ball. The incident was severe enough that the boys parents had to be notified.

So naturally, we were discussing what had happened, how G felt and how he should have appropriately responded to his feelings. G kept arguing that he couldn’t help it and would have to react the same way each time. It was not the first time, or even the hundredth time, we’d had this conversation on hitting. I admit, I got frustrated to the point where I told him flat out that he was wrong, that his job as a student was not to enforce the rules but to follow the rules. After a few minutes, G said quietly, “I know you don’t like my autism brain because you’re always trying to change it. But I can’t help the things my autism brain makes me feel.”

It was a stab in the heart. I love my boy more than anything and I firmly believe that with G’s intelligence and unique way of thinking, he can change the world. And I believe to have the successful life of his choosing, he’ll need to learn certain social skills to navigate in society. I always equate it to living in a foreign country. If I were to move to Poland tomorrow, I’d have to learn to speak Polish. I could relax and speak English at home with my English speaking family, and I might be able to find some English speaking Poles to help me from time to time, but the majority of my time in Polish society, I’d have to work my brain to translate my thoughts so I could get my needs met. But in my zeal to teach G Polish, had I pushed too hard and damaged his self-esteem?

The article on the Thinking Person’s Guide to Autism has made me examine my methods vs my motives. In the particular example I gave with G, I feel comfortable with how I handled it and can forgive my frustration. Because physical violence as a manifestation of frustration is clearly wrong, and not taking a firm stand on that now may land him in jail later. But what about the larger context of my parenting style? Am I doing enough to show G how much I love his unique differences? Am I taking the time to celebrate his autism brain the way I should? Am I praising and rewarding G when he reacts ‘appropriately’ in social situations or only criticizing his ‘mistakes?’ Am I creating a home environment where he can relax after a day in school, or am I forcing him to speak more Polish? Am I spending enough time simply enjoying G’s company instead of getting swept up into the early-intervention paradigm that teaches parents a day without therapy is a day wasted?

I wish I’d asked myself these questions earlier. I can see now that I need to work harder at creating a loving, validating, safe environment so when we need to have discussions on the black and white issue of hitting, it doesn’t feel like I’m adding to an already huge pile of criticism.

I’d recommend checking out the series on the Thinking Person’s Guide to Autism. Even if you don’t agree with much, there’s sure to be something there that will make you think.

Published in: on September 29, 2011 at 10:36 am  Comments (2)  

I Think We’re Gonna Make It

I hate the winter break from school.  It starts one full week before Christmas, which is way too long for a boy that can’t handle changes in routine, or the suspense of christmas gifts.  By the end of the first day he was telling us what we were getting for christmas so that we would return the favor and tell him because he couldn’t handle it.  All this caused his behavior to deteriorate.  He argued endlessly about everything.  I’m not kidding – literally everything.  Here’s one of our conversations:

Me:  G, go brush your teeth.

G:  I can’t brush my teeth!  You won’t let me!

Me:  That’s ridiculous, I’m telling you right now to brush your teeth.  I’m not preventing you from brushing your teeth.

G:  Yes you are!  You never let me!  You never let me do anything!  You’re the meanest person in the world!

After a couple days of this, I started sending him to his room for 20 minutes each time he argued excessively or called me names.  It helped him, because being alone has always worked to help calm G, but it also gave me a break.  And right until christmas day, I got a lot of breaks!

Once christmas came and went, things started getting better.  There was none of the anxiety inducing uncertainty of what was in that box under the tree to deal with.  And he had tons of new video games and board games to play so we’ve been having more family fun.

 Tomorrow night, we have a babysitter coming!  DH and I are actually going to try to celebrate New Years Eve.  I bet we’ll be counting down to midnight, not to celebrate the new year but so we can go home and go to bed without feeling completely lame.

After that, there will only be 2 more days until he returns to school.  I can easily survive two more days, it’s just a weekend.  Just a few more days and we’ll be back to our boring, comfortable, glorious routine.

Published in: on December 30, 2010 at 6:23 pm  Comments (2)  

When Bad Moments Are Awesome

The other morning, G woke up in a bad mood.  He was very disagreeable and argued with everything I asked him to do.  I got him started on the morning routine and then left the room to let the dogs out.  When I walked back into the kitchen I found G had put aside his healthy breakfast and was instead eating junk food out of the snack cabinet.  I firmly scolded him – and it all went to hell.

He cried, he yelled, he refused to brush his teeth until I threatened to take away his video games for the day.  He refused to get dressed until I threatened him again.  His yelling escalated, he demanded to stay in bed all day, he sat by the door and refused to put on his shoes.  And then – he threw up.

It was at this point that I realized I needed to switch gears.  So I called his bluff and after getting him cleaned up I told him to go back upstairs to his room and get in bed.  I explained that the only choices were to stay in bed or to go to school.  He happily jumped into bed and I called the school to tell them what was going on and that I expected we’d be about two hours late.

Thirty minutes later, G came out all happy and perky and ready to head to school.  We did a parent switch to keep things fresh so DH collected G’s gear and took him to school, where he went on to have a great and cooperative day.

I felt like I’d been run over by a bus at the end of all this.  But with a little time I realized how great this situation really was.  G’s meltdowns used to be violent.  Hitting, kicking, headbutting, throwing heavy objects, banging his head on the floor – all this was typical for G and we’d have to work quickly to get him isolated in his room (his safe space) until he could calm himself.  This time, G argued, yelled, refused to comply and worked himself into such a frenzy that he vomited.  Because he was so verbal, I failed to recognize the autistic meltdown for what it was which is why it escalated so badly.  But at no point did he attempt to hurt me or himself.

I’m incredibly excited!  This is huge!  He’s slowly been gaining more control over his emotions and was becoming better at expressing himself verbally and I didn’t even notice.  Now I’m grateful for the meltdown because it made me wake up and see how well G is doing.

Published in: on December 9, 2010 at 11:01 am  Comments (1)  

Nothing To See Here

Our house is on the market (we’re staying in our community but downsizing) and we had a showing late this afternoon so we had to get out of the house.   G knows we’re planning to sell the house but has completely rejected the idea so I sold the outing as an early dinner, dancing around the reason why.   (We’ll get serious with him eventually, but it could take quite some time to sell and making him deal with the reality of the situation for the next year seems pointless.)  The only place open at 4:30 was our local sports bar which happens to have G’s favorite calzones.  This made me even more nervous, because while I’m not a sports buff by any means, I’ve learned when it is football season.  Learned the hard way because the restaurant this time of year is filled with people who will suddenly shout and hoot.  Since we don’t actually watch football, these yelling episodes seem shockingly unpredictable and are extremely difficult for noise-sensitive G.  But G was pretty set on eating a calzone so we decided to risk it.

At first, it seemed like it was going to be fine.  There was only a small group of spectators and we were able to be seated in the balcony area, which shields G from crowds somewhat.  However, this small group had clearly been there all afternoon and made up for their small numbers in volume.  G handled it relatively well.  He was furious at the group but didn’t shriek or yell down to them or throw anything.  He did, however, threaten them extensively in a vicious undertone that kept me on the verge of laugher.  I managed to keep my giggles in and my expression bland, as laughing would have taken a precarious situation and flushed it down the toilet.

Clearly, we were in a difficult position.  I had told G we were having dinner.  We couldn’t go home and I couldn’t tell him why.  We couldn’t go to another restaurant because nothing else was open.  Time to pull out the bag of tricks.  I had him listen to music on his ipod to drown out the crowd noise.  He uses big cushy headphones instead of ear buds which we find helps cancel out more noise than music alone.  I also let him play his Nintendo DS all during dinner, which kept his attention focused even when something amazingly exciting was happening with the football.  I cut his food into tiny pieces the way I would have as a toddler, so it was easy for him to snag some food quickly and return to his game.  Since G was totally zoned out, I pulled my kindle out of my bag and read while I ate.

Then the dinner crowd started arriving.  With lots of judgy looks at the mother and son who would rather play with their gadgets than talk to each other.  At the mother who is actually letting her son is play one of those evil, mind-sucking video games at dinner.  I rolled my eyes and got back to my book.  (my vampire-fantasy book, I am nerdalicious)  Because G was calm, happy and eating instead of shrieking, kicking and throwing.  There was nothing to see here.

Published in: on October 16, 2010 at 9:35 pm  Comments (1)  

Riding the Wave

After all the effort we went through to keep G in camp and make it a positive experience with him, I was exhausted when it was finally over.  The last session, with two para counselors and an aide, went smoothly and ended Thursday.  Monday was the beginning of our last free week of summer before school starts next week.  I woke up, got G settled in with breakfast and the Game Show Network (his current special interest) and sat down to drink my coffee and surf the web.

And found an email from G’s new teacher, responding to a request I’d made about having a pre-school meeting to go over G’s quirks and needs.

It was a perfectly lovely email asking what other staff I’d like to have attend and what time would be best for me.  But I wasn’t ready for it.  I was so tired from fighting all summer, I didn’t have any fight left in me that day.  Not that I needed ‘fight,’ exactly.  I just needed the energy to advocate and it was nowhere to be found.  The amount of work I saw looming ahead of me in the next month was overwhelming and I felt empty.  I couldn’t imagine how I was going to go about creating constructive working relationships with a new teacher and a new sped teacher.  Instead, I was pulled under that now-familiar wave of grief.  The same one that was so sharp the day G got his official ADOS results.  The good news is that the grief wave is gentler and shorter now.  I still had those, “I don’t know if I can do this,” type feelings but this time I also had a stronger, logical voice that said, “Of course you can do this, look what you’ve already done to advocate for G.  This will be easy when you’re ready to deal with it.” 

I consciously set about putting my alanon program to work in this situation.  I stopped myself from looking ahead to the next month, which is traditionally the most difficult time of transition for G.  Instead I focused only on that day, then that hour, then that moment.  I took some deep breaths – the kind we’re teaching G to take when he’s heading toward meltdown.  I left my computer and went to eat a healthy breakfast so I wasn’t operating on coffee-induced hysteria.  Then I decided to invoke the 24 hour rule.  I saved the email to be dealt with the next day, when I had a more rational sense of perspective.  Nothing in this situation was as urgent as I was making it out to be.  I didn’t have to get on the phone and schedule the meeting right that second.  After all, it was barely 7am.

Scheduling the meeting and coordinating who will be there has been easy.  G’s new teacher seems very open to talking with us and says she’s looking forward to working with G.  There was nothing difficult about this situation, it was all in my head.  I got sucked under that wave incredibly fast and it’s effects lingered the rest of the day, making me emotionally touchy, so it was good I decided to postpone responding.  I would have hated for my first impression on G’s teacher to be that of  Hysterical Mom.  So the good thing is that I have experience and the tools to deal with it now.  The grief wave wasn’t as destructive as it has been in the past.  This time I recognized what was happening and didn’t allow it to dictate my reactions.

Published in: on August 18, 2010 at 8:49 pm  Leave a Comment  

Camp Breakdown

The second session of camp is not going well.  G is having the types of behavior problems we haven’t seen since last September, where for what seems to be no reason at all, he will hit/punch/push another child.   Unfortunately, the child he’s been hitting is the other camper with special needs.  (specifically, SPD but not autism)  I feel just terrible about this situation. It is never good that he hits anyone, but to hit another child with a disability is mortifying.  We’ve heard via the counselor that the other boy’s parents are upset that G is picking on their child. 

What I want to explain, but have not yet had the opportunity, is that part of  G’s autism means he does not have the ability to select a child and pick on them.  What is the more likely scenario is that their boy’s manifestation of his disability is triggering a sensitivity that is a part of G’s disability and G is lashing out in frustration.  This is an explanation, not an excuse. 

What we need to know is what is happening between the boys before G hits.  If we can determine the trigger, than we can work with G to either avoid the trigger or to handle it in a constructive way.   But this information is not easy to come by.  G knows he is not supposed to hit so when we try to talk with him about what caused him to hit, he goes straight into emotional meltdown.  What I learned from listening to Tony Attwood speak this past weekend (a conference post is pending) is that kids with Asperger’s don’t always have the ability to look at a past event in perspective.  Instead they relive the event as if it were happening again at that moment and feel the associated emotions as acutely as they did during the actual event.  I find this to be true with G, talking about why he hit this other boy seems to trigger shame, frustration and anger. 

We’re not getting answers from G, and the counselor is overwhelmed.  She doesn’t have another fully trained counselor working with her, instead she only has a junior counselor so she only sees the event after the boy has been hit.  There were two junior counselors last week so she had a better handle on the group, but one has been reassigned and now chaos reigns.  I’m extremely irritated with the camp program for their staff scheduling because we worked really hard to get them to realize that we were sending a child who needed more support than average. 

 I’m especially irritated because my first warning that camp wasn’t working out was a phone call yesterday afternoon where the camp administration asked if we could provide an aide for G because they weren’t able to provide the level of support he needed. The point of all the advance training with the BOCES was for them to understand and provide this extra support, as we were assured they were a fully inclusive organization and were familiar with handling campers with disabilities.  ( Ok – I can feel my blood pressure rising so I’m going to take some deep breaths and try to finish this post without ranting.)  What ended up happening after 10-20 phone calls to various resources is that the adaptive sports program was able to get volunteers trained in cognitive disabilities to act as G’s aide.  They’ll not only be able to help him take breaks as needed, they’ll be able to see what is going on between G and this other boy to help us figure out the trigger for the hitting.

I fully understand we’re not in a righteous position, as G is the one doing the hitting, but I’m also frustrated with the lack of understanding on the part of this other family.  I’m frustrated that this family just dropped their child into camp with no warning when we’ve busted our butts to make sure everyone was ready for G. Even though they clearly don’t have the aggression issues we have, I would expect them to have a better understanding of the situation.  If a disabled camper were hitting G, I would work to find a solution rather than blame the other parents for not being in control of their child.  

There are two more days of camp with this particular family to get through.  G has one more week of camp scheduled for August and we’re going to work with adaptive sports to have an aide with G.  In addition to providing excellent social opportunities throughout the summer, G really loves camp and really wants to participate.  Which makes me determined that he will participate, no matter the angst and frustration it causes for me or anyone else.

Published in: on July 21, 2010 at 12:26 pm  Comments (2)  

My First Conference

I’ve just registered for my first conference!  I’m going to the Future Horizon’s Autism/Asperger’s Superconference in Denver.  The speakers will be Temple Grandin, Tony Attwood, Carol Kranowitz and Jed Baker.   I’ve read books by everyone except Dr Jed Baker, but am excited to hear him speak as his topic is, “No More Meltdowns.”

Published in: on June 2, 2010 at 11:44 am  Comments (2)  

Don’t Take it Personally, Part II

G is in love with his daddy right now.  He wants to be with him every minute of the day and when he’s not with Dad, he counts the minutes until he gets to be with Dad.  This would be so great if he didn’t have an equal and opposite dislike of being with me.

Last night, we both took G to t-ball.  After the game, G and I were stopping to get our chinese take-out and DH was heading off to ‘a meeting.’  When G realized Daddy was not going to be eating dinner at home with us, he got very upset.  He kept saying, “Noooo, I want you to come home with me.  Pleeeeease, Pleeeeeease, come home with me!  Pleeeeease eat dinner with me!”  It was heartbreaking.  If it wasn’t pretty important that DH attend his meeting, I’m sure he would have caved.  Frankly, I’m amazed and impressed with his self-discipline. 

I got G distracted, we collected our food and went home.  But every now and again I’d hear him whisper to himself, “Stupid Mom, I don’t want to eat dinner with her.  I wish she went to the meeting.”  I acted like an adult and ignored it.  I was pretty proud of myself.

DH and I have an equal division of G-duty.  We have a pre-determined schedule so one parent gets up with him 3 days a week and puts him to bed 4 days a week, the other gets up 4 days a week and puts him to bed 3 days a week.  During the worst of times when G had multiple daily meltdowns, this was a sanity saver.  It allowed us to have a scheduled off-time, to pursue our own interests, to relax and regroup.  It kept one parent from taking on too much and burning out and we were much more patient with G as a result.

Today was my morning to get up with G, so when he came into our room this morning, I got out of bed.  G took one look at me, turned around and went back to his room.  I went after him to see what was wrong and he said, “I don’t want you this morning.  I only want dad.  I will not get up until Dad comes to get me.”  I ignored him and told him patiently that I’d be downstairs making his breakfast when he was ready to get up.

When he did finally get up, he found fault with everything.  He didn’t want the smoothie I put out for him until he found out it was left over from a batch DH had made yesterday.  I put it in the wrong cup.  I gave him a straw instead of a spoon.  I didn’t cut his toast into the right shape.  I took the high ground each time, until he said, “You’re so stupid mom – you can’t do anything right.”  At that, he went straight into timeout.  We had a very firm discussion about respect. 

Everything is fine now, he’s back to his normal self.  I know this is just a phase.  I know he sees the world in such black and white terms that when he feels such love for DH, it’s hard for him to expand that to include anyone else.  I know this evidence of attachement to DH is a very good thing.  I know I need to be the adult and simply wait for this to pass, while requiring basic civility and respect.  But gosh this is hard!!

Published in: on May 6, 2010 at 7:21 am  Comments (1)  

Spring Break Summary

We took G to Florida for a week to see his grandparents and hang at the beach.  Overall, it wasn’t a bad trip and we had several fun moments building sand castles, learning to crack crab legs and visiting an aquarium.  Yet it was still a difficult trip. 

We had several serious meltdowns, one at Disney’s Blizzard Beach where he ran from me and when DH got to him, G picked up a lawn chair and tried to throw it at him.  Another time, DH and G were floating on inner tubes out in the gulf.  G jumped off his tube for some reason and needed help.  DH pulled him onto his tube, but by that time G’s tube had floated too far away.  DH tried to swim out to it while keeping G safe and secure, but couldn’t catch up.  Realizing his tube was lost forever, G completely lost it.  He started hitting, kicking, screaming, tried to jump off the tube he was on to get to the other tube, hitting more when DH kept him close.  It was a dangerous situation -DH was exhausted when he finally got G back on the beach.  G was extremely delicate the rest of the day and at points would suddenly wail about his tube and scream at DH for not saving it.

The rest of the trip was characterized by general whining, defiance and threats.  G’s latest thing is to threaten retaliation when we warn him that he’s about to lose a privilege.  We’re trying to crack down on this and hope it passes quickly because it is incredibly frustrating.

Our travel home yesterday was pretty good.  But I’m wondering if G was just barely holding it together because he’s surely letting loose on us today.  We’re at the point where I’m going to write the school to warn them how off G is and remind them of the accommodations in place.  It’s easy to get relaxed because he’s been doing so very well this year, but complacency is not his friend right now. 

I know we’ll get through this, but sometimes I really wonder if vacations are really worth it.

Published in: on April 18, 2010 at 10:46 am  Comments (1)