This Journey

There's no doubt this journey we're on is different.  I've even become comfortable in saying it's hard sometimes.  And it's ok for me to say that.  It's ok for Tyler and I to acknowledge that autism can be hard which doesn't mean we love any less.  But mostly life is different in our family.  Such different experiences than most families.  We've always known this, but today it really hit me. 

We have a new respite worker starting today to help Tyler and I throughout the week, specifically during the Summer, but possibly other times as well, to give Tyler and I a much needed break.  Throughout the years we have relied on family and close friends to watch the boys for date nights or the occasional weekend away.  But we also didn't want to take advantage of them or expect them to watch our kids all the time. 

The last few years we have hired respite workers to help us- mainly because we can't rely on the teenager down the road to babysit our kids, our needs are so incredibly more complex.  The person we have in our house helping us needs to have long experience in watching kids, possibly a background in special needs and definitely needs to be able to handle various behaviors and know how to respond to them.  We've known for several years that this just isn't your typical babysitting job. 

But what really hit me today is that even if our respite workers come to us with special needs experience, we still need to train them and give them background on our kiddos.  It hit me that most families probably don't spend several hours going through various intervention options for meltdowns or what to do with destructive behavior.  Most families don't need to talk to their babysitter about what to do when their child shuts down or that sometimes their child is a runner and how to deal with that.  Most families don't talk through what their child's goals are with their skills worker so they, too, can work on those goals with him.  As I talked with our new respite worker today about sensory input that Charlie enjoys and different forms of therapy tools that he uses, I realized how typical these conversations are for me and for Tyler too and that most people don't have conversations like this when a new babysitter comes over.  

We have been fortunate to have some amazing respite workers the last few years, all who have really stepped up to the plate in some difficult situations.  And all of them loving our boys no matter what.  This is the first year our respite worker wasn't previously known by us before they started working with us.  New territory here, I tell ya!  I pray that we continue to have really good people in our lives that can be here to help us when we need it, because trust is not easy to come by these days, especially when it involves your special needs child. 

The Good in Unprecedented Times

I think we can all agree that there is plenty of negative going on around the world right now and I can tell you we have had our fair share of struggles these last couple months....big struggles.  But today we had a glimmer of hope.  We were able to see some of the very good that is coming out of this very odd period of time.

Over the last couple months we have seen Charlie and Sunny's bond grow right before our eyes and we didn't even know it.  Since the boys have been doing school from home and our family has been home now more than ever, Sunny and Charlie are with each other 24/7.  They don't have the 6 hours a day apart from one another while Charlie is at school.  Of course, they get small breaks from one another when Sunny goes outside for some alone time or when Charlie is riding bike, etc.  But for the most part, they are together all of the time right now.  And it's only improved their relationship.

Today we got out of the house to explore a nearby state park with tons of hiking, a waterfall and space to run, climb, jump and do whatever it is that little boys need to do to get their wiggles out.  This is the second time the boys have gone out beyond walks and bike rides in the last 2 months.  We all needed this day.

Usually when we're in public with Sunny, either Tyler or I will handle Sunny, with Charlie by her side, since she is still much bigger than Charlie is and easily outweighs him by almost 50 pounds. Every once in awhile Charlie will practice being Sunny's handler when Tyler and I are near to help, but Charlie often loses interest quickly.  Today was different.  Half way into our hike I inadvertently dropped Sunny's leash.  Charlie picked up her leash and away they went.  They walked a little ways in front of Tyler and I and he never handed her leash back the entire time we were at the park (easily over an hour).

The fact that Charlie wanted to handle Sunny floored me, but you know what was even better?  Sunny was amazing.  I know she shouldn't surprise me any more, but she does.  You see, while I was handling Sunny just moments before, she wasn't walking the best for me.  She is a well trained dog and knows how to heal, but it just wasn't happening the greatest at that time.  The moment Charlie took her leash she was by his side and walked beautifully with him.  There it is...that bond.  We've noticed other little things these past few weeks with these two.  Like how Sunny hates it when Charlie is out of sight.  If she's outside with him while he's playing and Charlie rides his bike down the sidewalk or runs around the side of the house, Sunny will position herself so he is within sight and she can see where he is going.  So, these last couple of months may not have been the easiest, but I think there has been some good that has come from it.  These two....they're becoming two peas in a pod.

Lessons from a Crisis Schooling Mom

In this time of great uncertainty during the Covid-19 pandemic people are forced to educate their children from home.  Some are calling this homeschooling, but in reality, this is crisis schooling.  Homeschooling would look much different.  Crisis schooling is what we have been thrown into without a choice and forced to figure it out along the way.  Some may be enjoying it.  Others may be enduring or just getting by.  I think we are somewhere in-between.

Sunny encourages Charlie to get his work done with lots of kisses

Both Tyler and I are considered essential employees at our jobs.  I'm lucky enough to be able to do my job from home, but as a social worker I have the uncertainty of being called out into the community at any time.  Tyler works at Mayo Clinic and is extremely essential as he makes supplies and equipment related to Covid-19 needs.

So while I'm required to put my work hours in from home I also have the additional responsibility of overseeing the boys getting their school work done at the same time.  Three boys all doing different tasks, two who have IEPs (Individual Education Program), and one who needs almost constant prompting and assistance.  Let that sink in for a minute.  There has never been a better example of the expression "being pulled in 6 different directions at once."  Throw in daily meltdowns and numerous motivational speeches and it gets to be a lot.  But here are some things I've learned along the way:

School doesn't need to happen sitting in a chair at the table.  In fact, my boys seem to learn best and focus better if they do their tasks in the weirdest most odd places/positions around the house.  Since this isn't homeschool, we don't have the luxury of learning in different environments.  They are required to do the work the teacher sends them and most of it is through an iPad.

The stairs are the perfect place to get things done

Christian doing his school work while riding his skateboard

It's ok if you don't get ALL the projects done around the house even though you're home.  The first couple weeks I stressed about not being able to get extra things done at home, until I realized that for us, doing extra right now isn't realistic.  We are in survival mode.  Do what you can, when you can.  No one is winning medals at the end of all of this.

Mama, it's ok if you don't have all the answers.  We are in uncharted territory.  We are bound to run into something we have no idea how to handle.

It doesn't hurt a thing if your child needs a small break in between each school task.  Yes, it may take longer to get it done, but we have no where to go anyway.

Sometimes you just need to soak in the sun and feel the grass beneath your feet (well, before it decided to snow again in Minnesota anyway).

Don't worry if you don't teach your kids like their teacher does.  It's not going to torture your child to learn the "old way" of solving math problems if that's the way you know how
to explain it to them.  And it's ok if you, as the parent, don't understand how to solve math using common core....don't worry, no one really does.

Getting our wiggles out in the morning before school work is practically mandatory.  I don't care if it means going for a walk, a bike ride, rock climbing, yoga, jumping jacks or running a few laps around the house, it needs to be done.

Sometimes school comes last and managing mental health and behaviors come first. And don't apologize for making that choice.

It's ok if you don't become a Pinterest mom during all of this.  Some days I call it a victory when all I've accomplished is knowing my kids have been fed (just being real here).

Being silly is a must at our house.

Snuggles and movies are sometimes the remedy to being overwhelmed.  Wine doesn't hurt either.

Naps are acceptable.

Telehealth is not for everyone.  We've maybe had one good session in the last 4 weeks.  I'm not going to push it.

It's ok if the kids have a little more screen time than they normally do.  If that's what brings a little more sanity to your day, then by all means, do it!

Sometimes we need a little help from our friends.

There are no perfect days.  

Don't feel bad if you're not having the time of your life while in quarantine.  It's ok to say this is hard.  Because it is.

We all need to have a little more grace these days.  More grace with each other and with ourselves.  We're all just trying to get by right now.

Charlie doing telehealth with his lead therapist