Isolation

Some of what I’ve read about parenting a child with autism references what the parents go through emotionally.  Specifically, stages of grief and feelings of isolation.  As we navigate our way through this process, I’ve definitely felt shock, anger, and sadness.  But G is a delight to me.  I love watching his brain work.  He observes, categorizes, files information away and then will recall something he heard and use it in perfect context - applied in a way that is slightly different than what would be typical but is a refreshing new angle.  I wish I had a good example of this – the next time he does it I’ll try to make note so I can blog about it.

I didn’t think isolation would be a big factor for us.  We have a fantastic family support system with 2 grandma’s that love to have G spend the night, which gives dh and I ample opportunity for date nights and weekend getaway’s.  We have a close circle of friends that originated with the playgroup/mommy group I joined when G was a newborn.  We were all first time parents and our children have literally grown up together.  We’ve since moved to a nearby town that has better educational services for G and are slowly making new friends.  But we spend a pretty substantial amount of time bbq-ing with our original friends in the summer and they visit us several weekends in the winter for skiing.  We manage to see each other at least once a month and until recently, it has always been a positive experience for everyone.

I say recently because the kids socializing together has become a bit of an issue lately.  They’re at an age were social interactions are becoming more important vs the parallel play of toddlerhood.  (Which G was never great at – looking back I can see that G would do his own thing and the other kids would imitate him, which helped me not notice the disparity)  We’re finding that when our 3 families get together, the two oldest in the other families play together and exclude G more.  We’ve actually had 2 explicit incidents where they exclude G to the point where they hurt his feelings and all the parents get involved to soothe/discipline/force the kids to play together.  Two days ago we went to the pool with one family and a more casual friend.  Their daughter was playing with the 3rd friend and G awkwardly tried to play along, with substantial facilitation on my part.  The daughter kept turning away and saying, “no G, that’s not how you do it.”  The girls mother gently corrected her and reminded her that everyone plays together.  At which point, the girl wailed, “But moooooom, I don’t want to play with G, I only want to play with E.”  The mom quickly whisked her daughter away for a talk.  G didn’t notice at all and kept swimming happily, attempting to engage E while the girl was away.  But I was heartbroken.  We stayed at the pool awhile longer and I had to make a serious effort to keep from raging at the girl or crying my eyes out.  She’s only 4 after all, and her mom is doing her best to teach acceptance and inclusion. 

Last night, we went to one family’s house for a bbq as we’ve done often in the past.  But it turned out to be a large party instead of the 3 family deal we were expecting.  There was lots of loud talking and laughter and a huge herd of 4 year olds running and shrieking through the house.  G did not do well.  He played outside in the sprinklers with the kids for a little bit until it got too much for him, and then started shorting out.  He came inside and went to the basement where he could play by himself and dh and I hung out with him.  Then he said he wanted to play with the kids so he went upstairs but quickly retreated to a back bedroom where we read books.  He said he was hungry so we ventured into the party to get some food but the chaos made him fussy and irritable.  First he wanted a particular food, then he didn’t, then he cried because the food wasn’t arranged on his plate properly, then he cried because the food he really wanted wasn’t offered.  (they had his favorites, hamburgers, hotdogs and fruit but he suddenly wanted pasta)  Since the overstimulation was upsetting him and we weren’t socializing with the other adults anyway, we called it a night and went home.

Not long in the past, when the kids were 2 or 3, this wouldn’t have been a big deal.  All parents of kids that age hover over their kids and deal with fussy spells or strong opinions and leave early if the kids are having tantrums.  What I’m noticing is that the other kids and families are moving past that phase while it seems we’re stuck in a loop.  I feel like they’re outgrowing us.  I am feeling a growing isolation from the social support network that means so much to me.  The kicker is that I am choosing that isolation because it feels like the right thing to do for my child. 

These are my dear friends, but if their kids aren’t nice to G at the smaller get-togethers and G isn’t enjoying himself at larger social functions, how can I continue to subject him to these events?  Is this just a phase for the other kids that we need to wait out?  Do I keep pushing the kids together in an effort to teach acceptance for others?  Even if it hurts G’s feelings in the short term?  Is there some conversation I should have with the parents to make this better?  I wish I knew what to do.

Teaching empathy?

G has a pretty sensitive sense of fear.  For example, while swimming lessons have been extremely successful, on the last day the teacher had the kids play a game where one child was a shark and chased the other children back to the pool wall.  Added to that, since all previous lessons had gone so well, I made the incredibly poor decision to move from one picnic table to another in order to talk with a woman I know.  So G got scared by the shark game, looked over to where he had left me for reassurance, couldn’t find me, and completely freaked out.  It took me 20 minutes to get him calmed down.

Another manifestation of this sensitivity is his inability to watch anything on tv that is the least bit suspenseful.  We generally stick to the 20 minute shows on noggin or pbs but he enjoys ‘movie time’ where we pop popcorn and turn the lights off to make the room dark.  He can watch a few movies as long as they are very mild, like the Air Bud, Air Buddies, Snow Buddies movies and he has control of the remote so can skip scary scenes.  Which is a vast improvement from the days before he could work the remote and would suddenly start screaming, “SKIP THIS PART, SKIP THIS PART, SKIP IT, SKIP IT, SKIIIIIIIIIIP IT!!!!”

Because of this, I am extremely careful about exposing him to any shows I watch during the day.  I pretty much limit it to MSNBC political coverage, as long as the panelists aren’t too shouty, and the celebrity interviews on Oprah.  The other day Oprah re-ran the Horton Hears a Who episode and I had it on while G watched the highlights and read books on the couch with me.  Everything went great until she showed the clip of Steve Carell’s chest waxing scene from the 40 Year Old Virgin.  Steve was screaming and G startled violently.  I was cracking up the way I do everytime I see this scene which really confused G.  He had started to get scared and cry, but saw me laughing and was trying to follow suit.  Which left him with this really painful grimace on his face as he tried to smile through his fear and he kept asking, “This is funny?  We should laugh?  Why is this funny?”

It made me think later.  “They” say kids with Aspergers are lacking in empathy and need help connecting to what others are feeling.  How true is that, when G was responding appropriately to someone in pain but I, the neuro-typical, couldn’t stop laughing?

Our Secret Weapon

We have a new secret weapon in our arsenal –  chewing gum.

It is so simple, so brilliant, so easy!  The mom of a child with aspergers passed the advice to me and I want to shout it from the rooftops.  Whenever G gets into that antsy, bouncy frame of mind that usually precedes a meltdown if we can’t leave the current location quickly enough, I give him a piece of sugarfree gum.  The chewing provides some kind of sensory input that settles him right down.  I’ve used it in the grocery store when the checkout line was too long for G and in the mall when he wanted to leave but I had one more errand to accomplish.  He only chews for maybe 10 minutes but the calming effects last another 20-30 minutes.  His strict adheranceto rules works in our favor and once we explained the rules of chewing gum we have never had a problem with him swallowing the gum or disposing of it anywhere but a proper trash can.

This past weekend was my grandparents 60th anniversary, so our family made another trip to the Denver area.  We drove this time and while G was disappointed that he didn’t get to ride in a plane, I was happier not to deal with security lines.  G did very well at the restaurant this time, although he was a bit hesitant to be around so many strange people.  DH and I became adept at body-blocking all the Aunts who wanted to rush up and hug or pinch cheeks.  We sat at the very end of the long table and had his leap pad game and a math workbook to keep him occupied.  At the end of the meal there was a delay in figuring out the check for so many people and G started getting amped up.  We easily could have taken him out to walk around at that point, but instead I reached into my bag and produced a stick of gum.  And voila!  He was cooperative and patient until we were ready to leave.

Such a difference from our last trip to Denver.  We had a very pleasant visit and even managed to take in a Rockies game.  The home team lost, but it was a high scoring game so there was plenty of action for G to take in.  No problems at all with overload from the chaos there because he is very interested in baseball and was focused on the field.  It was a fabulous family outing!

Disclosure

I’m struggling with who to tell what and when.  We – I mean, G, (still using the royal we, aren’t I) doesn’t have an official label yet.  I’ve got him signed up for a couple summer activities.  One is a kids music class and the other is swim lessons.  I got G involved in the music program as a baby when it was a mommy and me type of activity.  As an older infant and toddler, he really got into it and would bop along in the center of the circle, while the rest of the class conformed on the edges of the circle, to the beat of his own drummer.  Then one day he suddenly hated it.  Every time we would switch from one activity to another, G would melt down.  Or he would decide not to participate at all and would instead scale the bookshelf or count the stacked chairs in the corner.  To the dismay of the teacher, who adores G, I stopped signing us up for this class.

Two years later, I’ve signed him up for the music class again.  He still has a fierce interest in music, he’s better able to handle some of those old triggers and his best friend will be attending with him.  But at this age level, the parents drop kids off instead of attending with their child.  So before registering I had a conversation with the teacher, explaining G’s probable diagnosis, his triggers and his reaction to those triggers.  She’s ok’d the idea of me staying with him as long as he needs to get comfortable with the environment.  She’s very relaxed about the idea of G attending class again and couldn’t be more welcoming.

With the swim class, I haven’t told anyone about G and his potential diagnosis.  He’s a great swimmer for his age, as this is another activity we’ve been doing since birth.  He generally presents as a typical child who is strong willed and wants things to conform to his own agenda.  I didn’t want to run the risk of the parks and rec dept telling us G wouldn’t be able to participate because these classes aren’t set up to handle special needs.  Even though he was in the adaptive program for skiing, I am opposed to singling him out for swimming.

I really can’t explain the difference between music and skiing.  I have a gut objection to labeling him or singling him out for swimming.  Yet I’m nervous about taking him today and am anticipating all the things that might go wrong.  I am having trouble figuring out when I should disclose his special needs and when it is not necessary.  When is it informative and when is it stigmatizing?