Taking the Show on the Road

Traveling has always been hard for our family....well, let me back up.  Before Tyler and I had kids we loved to travel.  Back then we were always on the go.  Then we had our first son.  One baby didn't slow us down too much.  We still did all the things we liked to do, went to all the places we liked to go.  13 months after our first son was born, we had twins.  Premature twins at that.  Twins definitely slowed us down- adding 2 babies at a time is a little harder than adding 1 at a time.  Throw in autism on top of that and we were stranded. We slept very little and didn't know how to handle the things that would throw our child off track and the behaviors that were left in the wake. For several years we didn't go many places and when we did it was chaotic, frustrating and exhausting.  We tried to go camping as much as possible, something we have always loved to do and even then we didn't do that very much in those early years.  

Over the last few years our son, Charlie, has worked extremely hard during his therapies to learn skills that make life a little easier for him, to help him understand this world a little better.  In fact, our entire family has worked hard these last few years to figure out what works best for us.  We also added a service dog into the mix, Sunny, who has helped in more ways than we could have ever imagined.  

Friends, we recently got home from a 10 day road trip around Minnesota!  10 days traveling with our boys in our airstream camper and it couldn't have gone better than it did.  Since we incorporated our camper into each summer from the time the boys were little, it's like a second home to them.  It's where they are comfortable, especially Charlie who relies on things that are familiar to him.  Because of it's familiarity, when we do travel, we prefer to use our camper rather than various hotels.  For 10 days we stayed in 3 different campsites, visited 5 different state parks, hiked, fished, visited the Mississippi headwaters, spied a beaver in it's natural habitat, had nightly campfires, did a lot of stargazing and constellation identification, went geocaching, read a lot of Minnesota history, made lots of s'mores and even did homeschool on the road! 

Some things we think helped to make the trip go smoothly:

1. Every day we were very clear on our plan for the day and planned out things we knew the boys would love to do.  Sometimes we had to go over the plan several times. Sometimes our plans changed mid-day due to circumstances we had no control over and during those times we did our best to use skills we've learned to help us manage (rigidity is so hard some times).

2. We stayed busy, but also recognized when the boys had had enough and planned in down time.  One thing Tyler and I have learned over the years is to know our limits, when we can push those limits and when we need to stick to those limits.  I think we did really well reading those limits last week.  

3.  We involved Sunny with everything.  Since Sunny is Charlie's service dog, she goes everywhere he goes.  Sunny is Charlie's constant and something he can rely on to never change.  Sunny helped immensely with transitions throughout each day, being a constant when plans did change, calming with deep pressure therapy, riding safely in the truck, walking safely in public and so many other ways.  Honestly, we aren't sure the trip would have gone as well as it did if Sunny was not here for Charlie.  

4.  We took lots of breaks.  Charlie has always had trouble riding in the car, especially for long periods of time.  His threshold is about 1 hour before things start to go South.  Going into this trip Tyler and I knew we would need to take as many breaks as possible to avoid meltdowns every time we were in the vehicle.  Taking breaks along with having snacks, drinks and activities was a huge help.

5. Lots of patience and flexibility.  Tyler and I have learned to be extremely flexible over the years.  Plans we make often don't go the way we imagine.  Many times we may need to 'divide and conquer.' This often means one parent taking one child and the other parent taking the other two to do different activities.  It's not ideal, but sometimes it's what works best.  Or sometimes there are activities we would like to do with the boys and at the moment we go to do them, it may not be the right time or fit into how our day is going.  We've learned to accept these circumstances and roll with it.

I say this to tell you to never give up.  Never stop trying.  And if you haven't started working towards those scary goals yet, make a plan to take the first step.  We didn't get to this point easily.  It's taken a lot of hard work, a lot of trial and error and a whole bunch of other tries that didn't end well.  But this trip worked.  This trip was so much fun and so much good wrapped into 10 days. 

 

New Adventures

 Well, a lot has happened since our last update in July.  Schools are starting to announcing their plans for the year.  But this isn't a new conversation.  Tyler and I have been talking a lot about the school year for the past couple months; our concerns, our fears and how everything will impact our boys.  The unknown drives us crazy.  But as other schools have started to open up the past few weeks one thing is certain...the school year will be unlike any other year and no one knows what the future holds.  

Sunny snuggles are the best to stay regulated

We kept hearing talk of schools either going all day in person, total distance learning, or a hybrid of in person and online.  All of which could change in an instant depending on what the Covid numbers are like in our area.  There were draw backs to each option in our eyes.  Autism definitely throws a wrench in any of those plans along with the restrictions and new rules that go with them.  If they go in person there is no way Charlie will keep his mask on while at school.  He has a hard time wearing it for more than 10 minutes and most times triggers a meltdown.  I can't even imagine having to struggle with that each day.  And then there's the case of total distance learning or a combo of both.  The lack of routine that would go along with that would be brutal for a boy who thrives on routine and expectations.  With the real possibility and great likelihood of a school schedule changing from week to week and not having a solid routine to fall on would be an extreme form of torture for all of our boys.  None of these options are viable for our family.  So we did the only thing we thought would work the best for our kids.....

The dentist is not a fun trip to make

We decided to homeschool this year!  I'll be honest and say that this has been something that has been on my heart for a couple of years now.  To the point where I have researched all aspects of homeschooling extensively.  Which was actually pretty helpful because it made the jump to do homeschool less scary and I already had an idea of what I wanted to incorporate for lessons, schedule, routine, etc with my boys.  Now, getting it all put together is another story.  I've been working tirelessly the last couple weeks to get things organized and ready for us to start on 8/31.  

How do the boys feel about it?  They are actually very excited for it.  So excited, in fact, that Charlie asks me every day if we will start school tomorrow (despite having the start date circled on the calendar). Sure, I know everyday won't be perfect and lovely.  I totally understand that we will have hard days.  But being prepared for those days will help.  Giving myself and the boys a little grace will go a long way.  Will I be exhausted?  Most likely since I will still work part time from home in the afternoon/evenings.  But both Tyler and I feel this is the best option for our family.  And I actually think it will be wonderful.  Cheers to new adventures!

Making pancakes together

Burn Out

I'm here to tell you that burn out is real.  It can be cruel and debilitating and very, very real.  It strips special needs parents down to tears and sleepless nights.  It stops you dead in your tracks.  Any momentum you had previously gained is now gone.  It's paralyzing.

I realized the other day that burn out had set in when I could hear the screams despite having my ear buds in while working from home.  My ear buds were almost to the loudest setting, yet I could still hear my boy screaming (from another floor and opposite end of the house) during a meltdown. Taking my ear buds out, I went to see if my husband and our summer helper needed a hand.  The screaming has been intense lately.  Daily, in fact.  My ears and my sanity can't take any more.  On top of the screaming is the every day hustle and bustle noises of a house with 3 growing boys.  To say the least, our house is loud... all the time.  But the screaming on top of it all is the cherry on top.

Burn out takes the most rock solid special needs parent and reduces them into one big ball of stress.  A ball of stress who cannot make the simplest decisions, lacks ambition, gets easily overwhelmed and can't even fathom doing an activity they love.  Everything seems like an uphill battle.

But this isn't something new.  We've been here before.  Many times actually. We are in survival mode right now, a familiar place to us.  We spent many years in survival mode after our twins were born after all.  And then a few more years after an autism diagnosis.  A lot of special needs parents are feeling the same right now with everything that's happening in this world with a pandemic going on.  With a pandemic comes tons of changes and a lot of uncertainty- both of which do not work well with autism.  On top of all that uncertainty and change is our daily "normal"- meltdowns, self injuring, anxiety, behaviors, and therapy schedules. Then there is working exclusively from home, furloughs and upside down schedules. It gets to be a lot.  Yes, we've been here before. We've walked this familiar road.  And I'm sure we'll walk it again.  One step at a time.