Self-Advocating

We had friends from our old town come visit us for the weekend because our town had a music festival. They have two children, one G’s age and one about 5 years younger. They come up a few weekends each winter for skiing so the kids are used to each other and generally get along well. I volunteered to watch the kids on Saturday so the adults could go take in some concerts and watched them all play together nicely, even doing some great imaginary play. That evening, we had a babysitter come in so we could all catch the nights headliner and go to dinner.

The next day, our friends returned the babysitting favor so the hubs and I could go to lunch. DH and I were in the car, backing out of the garage, when the door to the house flew open. G stood there, shoes on, jacket in hand, trying to get our attention. We stopped and rolled down the window, and G demanded to come with us. We explained that he was staying to play with his friends but he was insistent that he was coming with us.

We were perplexed. G had never, ever gone through the separation anxiety phase so we had no idea what to do. I tried being firm and telling him he was staying and we were leaving. We tried reminding him of all the fun activities planned. Our friends tried to cajole him into staying with them. Nothing worked. I took him back to his room for privacy and tried to talk with him. All he would say is, “I just want to be with you,” in the most pitiful tone of voice.

DH took him back to his room to talk with him and had more luck. Apparently, G was overstimulated from all the socializing and needed a break. As soon as we realized this, we changed our plans. G came with us to lunch and our friends went to lunch on their own. As soon as we told him what we’d decided, he broke down. He started crying and saying, “Thank you – thank you so much for listening to me.” It made me want to squeeze the stuffing out of him!

It was as if the stress trying to get us to understand what he needed kept him from being to express himself effectively. Once he knew we were taking him with us, the words poured out. He told us about how the girls were so talky and chatty that he just couldn’t handle it anymore. He was overwhelmed by the noise, chaos and disruption to our usual quiet weekend routine. He was so grateful to have a break that he let us choose the restaurant, so we were able to get the nice lunch we’d planned on. We had a lovely, peaceful outing.

On the way home, we talked about the need to be good hosts for the remainder of our friends visit, especially since they’d been so understanding about going off on their own. He was very open to that idea because he’d had the time he needed to decompress. We told G how proud we were that he was able to ask for what he needed. Even if it took us awhile to really understand what he was trying to tell us, he didn’t give up, he kept insisting he go with us until we could work out the reason. I think this could be a major turning point for G – as long as DH and I remember to listen to what our son is trying to tell us.

Published in: on September 18, 2011 at 7:22 pm  Comments (3)  

Self-Identification

Back when we first decided to get age appropriate books to explain G’s disability to him, I went with books on Asperger Syndrome because it was technically correct.  G took to them very well and easily identified with the character descriptions.  Before we knew it, he’d incorporated Asperger Syndrome into his identity, his sense of self, and was very proud of what made him different.

Only a few months later, I read that they were removing Asperger Syndrome from the DSM and were replacing it with the broader category of Autism.  No big deal, except I’d just taught my son about himself using a different term.  I worried how my very factually precise little boy was going to handle changing the name when he’d just learned about that part of himself.  Then I worried about silly things, like if people would think he was elitist because he used AS instead of Autism. 

Since the change was a couple years off (and I very much appreciate the advance notice, I wish I got two years warning more often)  I decided not to do anything.  But I set about practicing myself as I found I’d become set in my own rut.  Try switching from saying you’re filling your car with gas to filling your car with petrol for a week and see how it feels. (flip that if you’re european)  It’s the same exact liquid – give or take some additives depending on your region.  It shouldn’t be a big deal, but saying petrol takes effort until you get used to it.

I’ve been practicing on this blog, using autism about half the time, and practicing in my conversations with other people.  Just recently at his teacher conference, where G was present to discuss his goals, I disputed an expectation typical for all third graders because G was, “an autistic seven year old so we’ll need to break the expectation down into more manageable steps.”  I looked at G to see what he thought of that and assumed it went over his head because he was unfazed.  We also have a book, “Different Like Me:  My Book of Autism Heroes,” that G adores.  He brought it into school when he was talking to his class about what made him different and they read a page once a week.  His classmates think it’s cool and it makes him very proud to be who he is. 

Because of all this, what I thought would be a Very Big Deal was really a non-issue.  Hubby is volunteering with the adaptive ski program this year and has a lesson scheduled next week.  We went out for ice cream yesterday (are we the only family that craves ice cream in the winter?) and while we were chatting I asked about the particular disability of his client.  He stated simply that the client, “is autistic.”  Upon hearing that, G said with excitement, “He’s autistic?  I have autism too!” 

Time to check one more worry of my list.

Published in: on December 19, 2010 at 11:07 am  Leave a Comment  

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  

Birthday Invitation!

G got invited to a birthday party!!  He’s been to two parties in the 4 years we’ve lived here and both were the kinds of parties where everyone in the class was invited.  This party is different, he was specifically invited by his best friend in class.  G is sooo excited!

It was a pretty stressful day for me, he came home yesterday and told us he was invited to his friend R’s birthday.  But G is not good at relaying information from his day at school so that was all he knew and there was no invitation in his backpack.  We didn’t know if he was really invited, or maybe he overheard R talking about his party and assumed he was invited.  These are the kinds of social minefields we navigate.  I knew if G had gotten it wrong, he would be crushed.  I started getting really nervous, trying to figure out how to approach the mom to ask for clarification without forcing G into the party.  But today at drop-off, R’s mom sought out DH and conveyed all the information.  G was right, he was invited to R’s birthday party!

This is wonderful on lots of levels.  First, G was able to remember important information and tell us about it hours after the fact.  That’s pretty amazing for G.  Second, G has a friend!  A friend that likes him enough to invite him to his birthday party!  This is a really big step for G.

Published in: on May 25, 2010 at 1:05 pm  Comments (1)  

Highs and Lows Part II

I’m having such an emotional day.  We took G to our town’s park to enjoy the nice day and he wanted to ‘ride’ his bike.  I’ve read anecdotal reports of difficulty riding a bike being linked to asperger’s and can definitely say that is true in our case.  DH has taken the pedals off G’s bike so it’s a big strider bike and that works best for now, G needs to get more comfortable with steering and show that he can take his feet off the ground before adding pedals.  He gets lots of looks and stares because he’s this giant kid very awkwardly pushing himself around.  Usually it isn’t a big deal but today it really got under my skin.  I caught myself glaring at people for daring to look at my child.
 
After riding around he wanted to play on the playground and ran into a couple classmates from kindergarten.  He was able to approach the boys and join their game smoothly.  DH and I didn’t have to sit right next to G to make sure he understood all the social stuff, we were able to sit back a distance and enjoy the sun.  We also noticed that while G’s language is still stilted and slower than the other boys, his ability to express himself has really improved this year.  One of the boys got frustrated with him and asked him to stop doing something, which is usually when G would react by hitting.  This time, he just stopped.  No yelling, no meltdown, no hitting – he just stopped and moved onto a different activity.
 
Then the two boys ran off to do something else.  They didn’t try to include G or bring G along with them.  And G didn’t even notice.  He just sat where he was and continued collecting sticks (I think they were pretending to build a campfire) and arranging them just so.  He was content so I guess I should be too, but it twisted my heart.  G has grown so much this year and I’m incredibly proud of him.  But I admit I’m a little discouraged to realize that even with all this tremendous progress, there is still so far to go.
Published in: on May 23, 2010 at 10:18 pm  Comments (1)  

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)  

Teaching Sass

G has recently started saying, “Duh!” with the exact right inflection.  (thank you, typical sassy second graders) I know it’s exactly right because it sends my blood pressure through the roof each and every time.  Unfortunately, his application is all wrong – he throws it randomly at the end of any response. 

One example occurred today when G walked out of the kitchen chewing on something.  Snacktime was over and dinner was not far off, so I asked him what he was eating.  He replied, “A cracker – DUH!”  Instead of blowing my top at the attitude, I was more concerned that he didn’t understand what he was saying and that his classmates would make fun of him.  We ended up having a conversation about how my question was not obvious because he had no food in his hand to clue me into what he was eating.  If he had walked into the room holding an apple with a big bite taken out of it and I asked what he was eating, then he could correctly say, “An apple, DUH,”  because I asked a question to which there was a very obvious answer.

G listened intently and asked some very relevant questions.  We role played a couple of examples of when to say duh and when to simply answer the question.  As he went off to get his hands washed for dinner, I looked over to see DH silently laughing.  He pulled it together long enough to say, “I cannot believe you just taught him how to sass you!”

Sometimes, the goal of acquiring age appropriate social skills isn’t all it’s cracked up to be.

Published in: on May 1, 2010 at 10:11 pm  Comments (2)  

I’m Very Frustrated Today

Because swirl of discussion surrounding the Frontline program on the vaccine wars, I’ve unwittingly seen several clips of Jenny McCarthy.  I usually do my best to avoid her – she makes me crazy.  She sounds so sincere in her interviews when she leans forward and says, “We just don’t know, so lets study it.”  It seems so reasonable – lets just study how vaccines cause autism.  How, not if, as if every thinking person knows vaccines are evil, which is the first of many assumptions I disagree with.

The reason I get so incredibly frustrated, is that it has been studied.  Over and over and over.  Vaccines are the most studied potential cause of … well, everything but autism in particular.  They’ve done small studies, they’ve done large studies, they’ve done epidemiological comparisons of children before and after thimerisol, before and after mmr, before and after the modern vaccine schedule and have found no difference in autism diagnosis between the two groups.  She never talks about that, she makes it sound like there is some vast government/big pharma conspiracy to keep scientists from even looking at vaccines.

Money for research is a finite resource.  We have public attention and sympathy (pity?) now, but what happens when the next cause captures public attention and money starts flowing that direction?  Every dollar spent on redundant vaccine studies is a dollar that isn’t spent on more promising research.  I have a personal interest in investigating the genetic links to autism.  But what about issues beyond cause and cure?  What about education for our kids today?  More paraprofessionals in the classroom.  Targeted, individual educations tailored to the needs of the child.  Research into how best to communicate with our autistic children instead of assuming they aren’t capable of complex thought because they can’t speak.  Lets design and research programs for higher education that can support the needs of autistics with brilliant, but atypical minds.  What about support for adults with autism?  Lets research what kinds of housing and employment programs work best so each person can live the most independent, most dignified, most fulfilling life of their choosing. 

That’s why I’m so frustrated today.  The Frontline program was good, but I don’t feel it has changed any minds on either side of the debate.  I feel like we’re stuck in an endless loop where the same discussions, the same research, the same debates just get recycled.  It’s why I haven’t been able to jump into the larger role of autism advocate.  I can’t stand the utter futility.  It seems more productive to me to focus on my G, making sure he has the best education he can get and focusing on identifying and teaching the skills he’ll need as an adult. 

Who knows, maybe one day he’ll be a global example of the potential every human has if they’re supported properly.  Or maybe he’ll just be happy – that would be good too.

Published in: on April 30, 2010 at 9:38 am  Comments (4)  

Head… Exploding…

One of the more frustrating habits G has is to state his opinion as fact and to absolutely disagree with any other opinion – because his opinion is fact.  We’re working to teach the difference between fact and opinion and to encourage the exchange of ideas in a more constructive manner.

It’s frustrating, but I understand the source of his difficulty and am reasonably patient with him.  However, when my husband displays the same behavior, it drives me absolutely batshit crazy.  Dh and I are going to dinner tonight (date night – whoohoo) but it’s off-season right now so all but a handful of restaurants are closed.  We just had the following conversation:

Me:  DH, could you call the sushi place and see if they’re open tonight?

DH:  I don’t think they’re open.

Me:  Could you call and find out?

DH:  They’re not on OpenTable

Me:  They don’t take reservations, so they wouldn’t be on OpenTable even if they were open.  How about you call and find out?

DH:  Their sister restaurant isn’t open.

Me:  Can you just call them and see if there’s a recording or something?

Dh:  Ok, but I doubt they’re open.

Me:   ARRRRRRRGGGHHHH!

Published in: on April 26, 2010 at 10:48 am  Leave a Comment  

Lessons Learned

DH and I have been doing a fair amount of post-game analysis, trying to figure out why our trip to the Olympics was so successful but a simple beach trip was so hard.  What we’ve realized is that we put a lot of effort into preparing G for the trip to Vancouver.  We’re never going to be able to spend a year prepping G for a normal vacation, but we should have done more.  We chatted about the beach and G’s current interest is dolphins and sharks so we read lots of books.  But we should have spent more time talking about our trip, maybe looking at a map of Florida, we could have shown him pictures of the beach house we rented, etc.

Another difference is because we had tickets to events for the olympics, our itinerary was rigidly scheduled.  I even went so far as to have a spreadsheet of the week printed out where I had blocks of time marked out for the event in one color and blocks of time for travel marked out in another color.  (I’m anal)  Based on that, we knew when we needed to eat, when we could ski, when we could go snowtubing, and I had all of that info penciled in on my spreadsheet.  G would check it every morning while he ate breakfast and that gave him a solid understanding of what would happen that day.

When we went to the beach, we had a handful of activities planned but we didn’t have a set schedule.  Some was dependant on the weather and some was dependant on how we felt that day.  In hindsight, that was too vague for G.  We should have planned out our week and written it out for G to see.  Perhaps we don’t need to be so rigid as to have the whole week planned in advance, maybe writing it out the night before and having G look it over before bed would have been enough.  Maybe we do need the entire week sketched out and can simply tell G that if the weather changes, we’ll substitute one day for another.

It’s clear we became overconfident after our trip to the olympics.  But I think we’ve learned some valuable lessons that will hopefully keep G feeling secure during the long summer break.

Published in: on April 25, 2010 at 11:02 am  Leave a Comment