The Unexpected Speed Bump

I’m a total Daddy’s girl.  I have been for my whole life.  My dad and I have always been close, although that closeness has changed form over time.  We’ve been lucky enough to develop an adult relationship as we’ve both gotten older, a true friendship.  We’ve related to each other in different ways as we’ve gone through stages in life, and our relationship hit the ultimate pinnacle with the births of both my children.  We had it all, Dad and I: cherished father/daughter relationship, adult understanding and friendship, and now that glorious parent/grandparent bond.

But today I’m writing about the other side of our beautiful coin.  The tarnished side.  In writing this, I’m trying to be kind and understanding, while staying true to my feelings.  I don’t know if Daddy will read this, and while I don’t want to bottle up my feelings, I want to be fair and understanding.  So Dad, if you are reading this, know that I’m not angry and I’m not attacking you.  I’m writing honestly and from the heart, from the deep well of feeling I have for you and our relationship.

Yesterday I got my feelings hurt hard.  Yesterday I got my assumptions turned on their ear.  Yesterday I got another look into that mirror of reality.

Yesterday my parents, who live an hour and a half away, came up for a planned visit.  Coincedentally, Big A was leaving for a trip yesterday, so he didn’t go in to work.  Because of this, Dad called yesterday morning and asked if we wanted to change their visit to Sunday so that I could focus on Big A before he left for his trip.  I totally appreciate the thought and gesture behind Dad asking if we wanted to change plans, I really do.  I’m very grateful that he thought of what was best for our family, above what their plans already were.  How very unselfish of him!  But unfortunately I didn’t react gratefully.  What I did say was that no, I had already structured the day around them coming so I’d rather go with the plans we already had.  I might have said something about not wanting to change plans at the last minute.  Now I completely understand how that sounded to him.  I sounded rigid and anal.  He responded with “ok, but you know that stuff comes up in life all the time.  Sometimes you’ve gotta roll with the punches” or something like that.  He was totally TEASING me, I get that…

Thing is, I wasn’t talking about me at all.  I was talking about both boys, about how I was changing their schedule for the day to accomodate a Grandparent visit smack in the middle of their day, and how that schedule change started the minute they woke up.  I was talking about Bubs and the fact that I had already started prepping him for Nana and PopPop’s visit.  I was talking about Bub’s newly structured life which included a picture schedule to help him deal with transitions and to help him understand the things that are happening to him.  So I was slightly disgruntled by the comment about dealing with unexpected events when I’m in the midst of working really hard to set up a structure that Bubs can depend on.  This involves a lot of work, a complete change in how we move throughout our day.  This involves hours spent assessing Bub’s needs, communicating with his teacher (who is our source for the pictures we need for his picture schedule), cutting out pictures, backing them with cardboard, covering them with clear tape to make them durable, cutting velcro, posting pictures around the house.  Explaining to Bubs what each picture means, walking him through the process of moving from one activity/area to another with picture assistance, teaching him to check his schedule to anticipate what the next step is.  All of this is building blocks so that Bubs can move on to a multi step schedule, which will help him understand what is coming and reduce anxiety.  I’ve talked these things over with Dad before, and I really thought he was understanding it.  I thought we were on the same page.

Dad called again later in the morning to say they were on their way.  Originally the plan was for them to arrive around 11 AM and that was what I had structured the day around.  Well, they left late.  Of course I understand, life happens, deal with it… but again, it messes up the structure I’m working to provide for Bubs.  Anyway, I asked Dad (a diabetic) what he wanted to do for lunch, because now they would be arriving at noon, and I know he needs to eat at certain times.  He said he didn’t know, maybe we’d pick up sandwiches or soup, or maybe we’d pick up and go out to lunch.  Of course, he knows I love to eat anything I didn’t have to fix myself.  Sure, it sounds lovely and relaxing to just simply drop everything and go out to eat… but no, it’s not that way in our new world.  I told him that if he wanted to go out to lunch we would have had to decide that ahead of time.  I said we can’t just pick up and go out, that I’d have to have time to prep for it.  Dad again said something about things happening in life all the time, that plans change and I have to deal with them.  This time it didn’t sound as lighthearted and teasing.  I don’t remember my response but I’m sure I gave him attitude before we got off the phone.

By this point I was crying.  I was hurt that he didn’t understand.  I felt that he was blaming me, ME, for being selfish and uncooperative.  How could he not understand?  The amount of work it takes to think through taking both boys to a restaurant, gather everything we might possibly need in case this, that or the other happens, prep the picture schedule that is still a work in process (and therefore we don’t have pictures to support a trip to a restaurant yet) and on top of all of that prep Bubs for an outing that he will not understand.  All of this work falls on me, because Big A is on his way out of town, and my parents would be arriving right when Dad needed to eat, so it would be more of a show up and leave again type of thing.  I’m not saying I’m not willing to do the work, I will do anything I can to improve things for Bubs, but it’s exhausting to think of all the work that has to go into a simple lunch out.  Completely takes all the fun out of it.  And at the time of day I was getting the news, I really didn’t have enough time to accomplish it.

Now I gotta be fair to Dad.  He hasn’t seen the picture schedule in action.  He pretty much has no idea what it’s all about, except for what I’ve told him.  He’s only seen Bubs once since he started school, and that was at the boys’ birthday party, which was crazy and there was no way we were attempting to use the picture schedule with over 35 people in our house.  This is all completely new territory for our family.  But I was assuming he “got it”.  I WAS being self-centered, or at least family-centered.  I was viewing things from inside our family bubble.  I know it’s unfair to expect that Dad would immediately understand where I was coming from.  But I was still hurt.

It hurt that while I am so hip-deep in wading the new waters of autism, someone who I’m very close to would misunderstand a situation so much.  It hurt to be blamed for reacting to a situation a certain way, when I was coming from a completely different direction.  It hurt to be told I was wrong, because that’s what I “heard”.

Bubba doesn’t really have melt downs.  Ok, he gets really REALLY upset at the end of Chicago Wolves hockey games.  He gets very overwhelmed and cries REALLY hard and shakes.  But other than that, he doesn’t have melt downs.  He’s pretty much a “go with the flow” kind of kid.  But here’s the thing: he doesn’t actually UNDERSTAND what’s going on most of the time.  When we take him places, we’re just kind of dragging him through life, and brave boy that he is, he just deals.  Yes he stims, yes he finds things to look at and talk about.  And yes, he enjoys himself for the most part.  He’s a very happy child!  But I want him to understand.  To UNDERSTAND.  And explaining thing to him verbally only get him so far.  We have learned since he started school that a picture schedule helps him tremendously.  He’s better able to navigate life without anxiety, with more understanding.  I cannot wait to move him up to a multi-step, stationary schedule so I can plan out his day and he can comprehend what will happen step by step.  Once we can establish this structure and he can understand, he will be better able to deal with changes when things come up.  And not only deal with unexpected events, but UNDERSTAND them.  But I can see where someone other than those closest to Bubs would struggle to understand the point behind the picture schedule.  Why go through all the work?  He’s verbal, why not just TELL him what’s happening?

Once my parents were here, and we were finally eating lunch, I screwed up my courage to bring up the phone calls from that morning (even at almost 40, challenging your Dad is still hard to do).  I really tried to not inject negativity and emotion into the conversation.  I let Dad know that I had been upset after our phone calls, and I wanted to explain why.  I asked him to be more sensitive to the fact that I’m working my ASS off to help Bubs, and that it’s not ME with the issue, that I didn’t want to rock Bub’s world by throwing something unexpected at him right in the middle of trying to set up structure that he can depend on.  I told him it hurt that he made it sound like I was not willing to change plans for personal reasons, when it was on Bub’s behalf that I was resisting.  And to be frank, I didn’t get the reaction I was expecting.  I don’t know if Dad understood what I was saying.  He didn’t really respond.  I expected an apology.  I didn’t get one.

We spent a lovely afternoon together.  I made sure that I stuck to structure as much as possible.  I made sure to use the picture schedule at every possible moment, to show Dad how much it helped Bubs understand what was going on.  I had to stop Dad a few times from doing something so that we could go through the process of using the schedule.  I hope it helped him understand.

I really wasn’t anticipating MY Dad to not understand anything that is happening in our family.  He’s usually my rock, my voice of reason.  And I know him well enough to see completely where he was coming from.  But as I talked with my parents later in the day about an interview I saw with Temple Grandin, I watched my dad check out of the conversation.  As I tried to relay what I though was profound information about autism and something Bubs struggles with, I watched my dad disengage eye contact, turn slightly away and stare at pictures on the wall.  What just happened?  I’m trying not to read too much into it.  I’m hoping that he was still listening to what I had to say.  But it APPEARED that he didn’t want to hear it.  From his actions, I now worry if he’s on board our autism train.  I now have doubt.  I now am not sure.  I know he loves Bubs beyond all else (truth be told, maybe even a smidge more than Monkey, and that’s ok) but what else is happening here?  Is there denial?  Is there disbelief?  Is there some sticking of a head in the sand?  All completely valid, of course.  Dad is entitled to his own emotions about what is going on.  But I just totally was not expecting anything but complete and total compliance to our way of life and our philosophies when it comes to Bub’s autism.

An unexpected speed bump on my proverbial broken road.  But Dad’s right, unexpected things happen in life.  So I’m gonna hold it together as I roll with the punches.

This entry was posted in Autism, autism grandparents, Uncategorized. Bookmark the permalink.

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