Change

 Change is inevitable. 

All of us will experience some sort of change in our lives whether we like it or not. 

I admit, there are changes going on in my life right now that I’m having a hard time dealing with. Big changes. Hard changes. Changes with no rhyme or reason.  Work-life balance is a sensitive thing. 

Tonight I watched my son Charlie play in the back yard with his service dog, Sunny. All of this change made my thoughts turn to him. 

You see, he doesn’t do well with change. Not at all. Autism makes change hard for people. For Charlie, change means confusion, meltdowns, destruction, emotional dysregulation and the inability to get back on track easily.   

But for a people like my son, who are so incredibly affected by change, how are they supposed to handle change as they get older and go out into this world when this world is ever-changing?  It's honestly hard for me to fathom when change is so debilitating for him.  

Change for him throws everything off in his life.  He likes his routine and for that routine to be predictable.  If there is a change we need to help him prep for it in advance, talk about it, dissect it, plan and repeat.  

At home, he is able to do what he needs to do in order to slowly get back on track, all on his timing.  At home he can find his comforts, have his people and service dog with him.  But what is he to do when he goes out into the world and someday gets a job?  A job where tasks change, schedules change, and expectations change constantly.  The thought of it puts fear in the pit of my stomach.  

Things like this are exactly why we invest so much time and energy in therapies each week.  

We don't know what the future holds for our son Charlie. We are fully aware of some of the challenges that lay ahead of him.  All we know is, that as parents, the best we can do to prepare him for his future is to provide him with the services available to him, provide a loving, sportive home and surround him with a network of people that will continue to love him and support him through life. 

The Ebb and Flow of This Life

We’re in a rough patch here. It’s always hard to pinpoint what can set our son off track. Maybe it’s the switch from the school year to Summer, change in schedule is always hard. Maybe it’s boredom, or the anticipation of something coming. Maybe it’s because the grass is green. I really don’t know why we spiral down so fast, but we are at the moment. 

It’s always hard to catch my breath when the road gets rough, especially if we’ve been riding a really good wave for awhile. 

It never ceases to amaze me how our son can go from amazingly well for so long to completely out of sorts in the blink of an eye. Like the flip of a switch. 

Recently I thought back to another rough patch a few years ago.  Charlie had been working with his lead therapist for a couple years when I had been talking to her about the ebb and flow that we see and how frustrating and scary it can be- for Charlie, for the whole family.  I’ll never forget her response. She said ‘Charlie can function well, but that doesn’t mean his autism isn’t severe.’ 

It honestly was a punch to the gut. I had accepted that our son had autism. But it was almost like I was holding my breath, waiting for....something. Autism to go away? Maybe. Silly really. I had known it wasn’t going to go away. But I guess I hadn’t considered that our son's life was as severely affected by autism than I had thought.  

During the rough patches it's hard to relax.  It's like watching a storm brewing.  We can see it on the horizon but we don't know how far away it is or when it will hit.  When it does arrive, we wait out the storm as best as we can.  We ride the waves, the ebb and flow.  And we'll come out of it again.  Together.

Transitions With an After-Taste

Think about how many transitions you have in your day.  You wake up, get out of bed and get into the shower, you get out of the shower and get dressed, you leave your house and go to work, you have hundreds of transitions throughout your day and then you need to transition from work to going home, and on and on the transitions go throughout your day.  Most of us don't even think twice about these transitions, we just do them and move on with our day.  

Our son Charlie is 9.  He has autism.  Transitions for him are a big deal.  Huge, really.  Transitions are rarely easy for him.  He needs lots of prep time, social stories, countdowns and lots of patience.  

Last weekend we kicked off our camping season.  We've been camping with our three boys since they were babies.  It's something we all love to do together and have made so many memories.  We started prepping Charlie for our first camping trip a week before we went.  We walked through what day we were leaving and marked it on the calendar, we talked about where we were going, what we would do there and what day we would come home.  

There is always a good dose of nervous excitement for him leading up to leaving. 

The transition home is always a tough one, especially after an extra long weekend of camping.  We can prep him as much as possible, but there is almost always fall out.  Meltdowns and disregulation are inevitable. We've come to expect it. The expecting doesn't make it any easier.  But we've come to know what Charlie needs too. 

Charlie needs time to decompress.  He likes to watch movies or TV for some down time and having Sunny directly involved is a must.  Deep pressure from Sunny helps immensely.  I know it doesn't seem like Sunny would be able to do much to help with a transition, but she does.  She's Charlie's constant and someone he can count on to always be there with no judgements or demands.  Take that constant away and recovery from a transition will be longer and harder to get through, for all of us.  It helps to have his favorite blanket or stuffed animal with him for comfort.  No, not just any blanket or stuffed animal will do, so don't try to switch it out on him and think everything will be ok.  Don't get him to try to warm up to something new, that will just make it worse.  Stick with what he knows and loves.    

A good transition can take several hours and Charlie will be back on track.  A tough transition can take several days or a week to get through with increased meltdowns, behaviors and disregulation in general.  We never know which one he'll experience.  But if we can recognize the signs early enough we can hopefully help him get through it easily.