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.

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.