The Thing Is…

Yesterday, we had a great annual fundraiser called Ride for the Angels at Cyclebar.  At one point, the instructor said, “think about why you are here, think about why you are riding.”  It was hard not to get emotional, and it felt really good to ride with a purpose – my sweet Jim but also our family.  I was thinking today about the progress we had made overall and how sometimes the strides can be so subtle that you almost miss them.  Some of the progress can be easily be taken for granted because you get so used to living with that particular fear or behavior that when it’s gone you almost miss the fact that it left because the work around just becomes a way of life.

Our initial challenge was language development, and I remember the speech therapist trying to get Jim to say “I want” and using a song-song tone of voice along with a hand motion.  We worked and worked for months to get that down and applied to daily life along with other two word phrases.  There was much incremental progress along the way that initially was just intended to help him communicate needs to us.  Eventually we went onto three word sentences and descriptive language.   It was easy to see as he got older and his skills developed how much the language element had inhibited his social engagement with peers.  Today he asks me questions and tells me things in complete sentences.  Our conversations are still very concrete, but I will take it.  He now initializes conversations: Mommy, where are you going?  Me: I am going to the store.  J: What do you have to get?  Me: Oh just a few things, it’s a short list. Do you want to come with me?  J: Yeah, I’ll get my shoes.

I know many parents will read that and say, what is the big deal?   Here’s the big deal: He engaged.  He asked a question without prompting and of his own volition. He replied appropriately on topic.  A normal exchange that I know many parents would not even think twice about, but to me, it’s gold.

One of the challenging things about the social element is that it is uncertain.  He does not know what someone will say back to him if he does decide to engage.  And what if he does not know what to say?  Like Jim, many children on the spectrum are social, but it is the unknown or unpredictable nature of social interaction that makes them avoid it.  Many times, they are comfortable playing alongside but not necessarily with other kids for that reason.   We keep working at it, and what I have found is that some kids are really understanding with it all, and that is such a help to him as it sews confidence.

I am so thankful for the progress we have made as I know that not everyone experiences that.  There can be upward momentum followed by long plateaus and then an explosion of progress.  If you are not a patient person before autism, you become one over time….the disorder beats you into submission in that regard.  I think back to when we could not run the vacuum because the noise would result in an instant meltdown.  We used to monitor where we would be at noon on Saturdays because that is when the tornado siren would go off.  That too would send him bolting inside with a truly fearful response.  Now, he either tolerates it or grabs his noise canceling headphones and hangs out.  He used to eat bananas all the time, and now he hates them (it’s a texture thing – he loves banana smoothies!) and hates for anyone else to have them too.  This one has gotten better – we have gone from not even being able to be in the room with them and very nearly being physically ill to tolerating them if someone else is eating them.  Out of nowhere there came a fear of commercials on the TV and/or the TV being off.  Neither my husband nor I have any clue why this is an issue.  He hasn’t been able to explain it as of yet.  I still just hate the fact that things like that cause him such angst.

We have all become accustomed to these types of things over the last few years, even big brother.  He has exhibited a patience with it all that is really special for such a young man.  He loves his little brother and tries to help when there is a round of anxiety about something.  He tries to talk it out with him when he can, and those conversations are really heartening to overhear.  It’s the building of understanding and trust between the two of them that is so very special.  The brotherly bond is strong, and it’s nice to see him care for his little brother and back him up when he needs support.  I can tell that Jim leans on the support as well.  It does my heart good to know that Jim will always have his brothers and that they will have him.  They are all gifts to each other even if they do not know it just yet.  I hope that as he grows older some of these things will fall away and not be an issue, and then again maybe there will be new things that will be bothersome.  We really do not know, but we will be there to love and support him whatever the case may be.

We all have things to overcome, and in that way, we all have something in common with kids on the spectrum.  Maybe its a fear of flying, a fear of large crowds, an awkward conversation style,  a lack of discipline with exercise or diet, a weird food aversion, a lower aptitude with math or reading, or something else.  There is almost always something for us to overcome, and the thing is…kids on the spectrum teach us every day that it is possible to do so.