"In Your Eyes"

I was talking to myself the other day, as I often do.  What? You know you talk to yourself too.  Anyway we were thinking (me and myself) that August is a month of quite a bit of significance.  For one thing it is the month in which Zane was born.  He was actually born on August 22nd 2001.  Does that year ring a bell?  Zane was born 20 days before 9/11/2001, a day that will remain significant for all times.  His birth was also a very significant date in my life, it was the day I changed forever from a person, to a parent.  For those of you who have gone through said transformation, it is a significant change.  The other noteworthy part of August is that is marks the return to school for my kids. 

I think parents everywhere can appreciate that summer is a tough time in parent land.  I don’t want this to sound negative, we love our kids after all, but it certainly upsets the routine of the normal flow of life.  Let’s face it, for 9 months of the year our kids are at school.  What we believe about school, and it’s effectiveness is a different story (or perhaps a blog in the future).  So when they are suddenly cut loose for 3 months. . . well it requires some adjusting.  Most kids, whether they believe it or not, like routine.  So when the routine is thrown off, the kids are thrown off.  This is especially true of kids on the spectrum.  For Holden there was the added issue of his therapist having to take time off of work, that coincited with the end of school.  So he went from having school everyday from 8:15am till 2:50pm, then therapy from 3:30pm till 5:15pm, to nothing.  This is one of those huge nothings, like in the cartoons, where it goes from the huge crowd noise, to the sound of a loan cricket.  Holden’s reaction was equally extreme as he attempted to adjust to extreme change.  His meltdowns became more frequent, and more intense.  They also became more aggressive.

On any given day, I tend to wear a few different “Uniforms”.  I am Zane’s dad, Holden’s dad, and Holden’s therapist to name a few.  After all, the whole point of “in home” behavioural therapy is that I learn how to work with Holden in his home environment.  If I can learn the necessary skills to make daily life more connected to the world, then that is one more avenue for Holden to learn from, and grow.  My goal is to get Holden “wired in” to the rest of the world.  I don’t want to change Holden, I want Holden to be able to connect to the other “www”, the world wide world.  Holden has shown us all that he is very intelligent, funny, sweet, loving, and capable, now we just need to get him connected.  I believe if he can learn to express himself outwardly, he can overcome a lot of his “behaviours”.  I think it’s a major bummer that we all can not connect to his universe, I suspect it’s a pretty amazing place.  The few times I have been honored enough to catch a glimpse of that world, I am left in complete awe.  Unfortunately it is not practical for the rest of the world to get “wired in” to Holden. 

So this summer, I have been forced to wear my therapist uniform a lot more.  The temptation is to just hand him his iPad, and leave him to stem over youtube all day, but this not only causes him to DISconnect from the world, it also leads to meltdowns as well.  Like the Romans  of old, he consumes and consumes, until he needs to go barf it all out.  So I work with him, and work with him, and work with him.  Honestly I am bruised, bloodied and exhausted, physically, mentally, emotionally, literally, figuratively, ideologically, and mathematically (just checking if you are paying attention, not really mathematically) from our daily work.  What I can tell you is that Holden’s functional language is up, his eye contact is up, and his expressive language is up.  I like to tease Holden (I should note that I tease him to connect with him, not to be mean), so the other day when he requested a bean and cheese burrito, I asked if he wanted a bean, RICE, and cheese burrito (Holden doesn’t like rice in his burritos), he responded with “No rice” which was a totally normal response for Holden, but he followed it up with “I want bean and cheese burrito, no rice please.” Wow! That is a huge sentence for Holden. There have been similar extended sentences like this from him this summer.  Likewise there have been more times where he spontaneously makes really good, held eye contact.  Those are the great aspects of working with Holden everyday.  There are, of course, trials and rough days (a lot of rough days) and meltdowns that lead to self injurious behaviour, as well as hurting those around him, mainly me.  Like his therapists, I have learned to not take it personally.  That doesn’t mean I don’t lose my patience from time to time, or end up biting Zane’s head off for something that probably didn’t require that response.  It means that after the meltdown is over, I lick my wounds, treat Holden’s, give Holden a big hug, and we go back to work.  We re-engage, and move forward.  I don’t take it personally. 

This is my first blog in way too long.  I think there will be more to come, and more frequently.  I have allowed too many outside variables to affect me, but I hope to not allow that to happen anymore. I created a Facebook page for this blog, you can find it here: https://www.facebook.com/autismandmytwoboys?ref=hl&ref_type=bookmark 

I will always post when I write new blogs here, plus post other things that are hopefully helpful and interesting for parents of children on the spectrum.  Also stuff I am not allowed to post on the nonprofit's page.  Hope you all like it!