Choosing To Find The Joy

Some people are calling the year 2020 as the worst year possible.  And for some maybe it has been.  You can choose to focus on the bad, the anger, the sad- those are all very real and deserve to be acknowledged, but I choose to dwell on the things that have been good for our family. 

Sure, things have been extremely different this year.  Strange, even.  We've encountered things this year that we never could have imagined we'd see in our lifetime.  But if you choose to continually live in the doom and gloom, it will eventually consume you and change you into someone you no longer know.  

So, here's our good....

In March the boys were sent home from school to do distance learning.  I was sent home to work from home indefinitely.  I already worked from home 75% of my week, but I wasn't used to the boys being home the same time.  This was a huge adjustment period for all of us.  Distance learning was difficult for my boys.  But I am grateful that I could work from home and still be there to help them each day.  We did get through it- as a team.  

Summer brought us an incredible nanny to help with the boys so I could actually get some work done during the week.  I was still working from home- locked in my makeshift bedroom office (the only room in the house that has a functioning lock) while the boys were home with the nanny.  I learned a locked door doesn't mean a darn thing to three little boys and noise canceling headphones don't drown out their incredible noise.  But, I'm extremely grateful to have such amazing help this Summer from someone who helped the boys (and Tyler and I) grow in immeasurable ways.  

We were also very lucky to be able to do as much camping as we did this year.  Camping isn't new to our family.  We camp every Summer, but we weren't sure how much we'd be able to do since campgrounds in Minnesota were closed at the beginning of the year.  Once they opened, we were able to make numerous reservations, including a week and a half long camping trip to Northern Minnesota as a family.  We were a bit nervous since being out of routine and traveling can be hard for Charlie, which in turn makes it hard for all of us.  But we had an amazing time as a family and our timing was impeccable.  The night before we planned to travel home, all three of the boys told us they were ready to be back in their own beds.  But honestly, so were Tyler and I.  

When school started again this Fall, and with so much uncertainties on how the school year would go, Tyler and I made the huge decision to pull the boys from public school and exclusively homeschool them.  In all transparency, homeschool has been a topic of conversation for a few years.  This year it was barely a question.  We knew there would be a lack of routine this year- something Charlie thrives on, we knew there would be the chance for more distance learning- which we know did not work for our boys earlier this year.  And we knew wearing a mask for hours upon hours each day would be hard for one of our boys to comply with.  We felt homeschool was the best choice for our boys....and we haven't looked back. 

 With the decision to homeschool came a change in my work schedule so I could juggle more during the day without them overlapping.  6am-8am I work before the boys get up.  8-12 is a time to focus on the boys and their school- which I've been able to stick to.  I don't check my work email and I rarely have my phone on me.  That time is exclusively for them.  Then from 12-530 I work again while the boys keep themselves busy with outdoor time, chores, reading, games, puzzles, crafts and some screen time.  We've nailed down a great routine which we have all been thriving in.  Do we have tough days?  You betcha!  But we grow through them together.  The boys' growth in their relationships with one another has been one of my favorite things this year.  They've endured a lot together.  And they've come through this year as champions.  I am incredibly thankful that we've had the chance to homeschool.  There has been so much good that has come from this choice.  It's safe to say the boys have been loving it too.  

Despite some growth, there has been set backs too.  Before the world seemingly shut down, Charlie was doing so well with outings in the community.  His tolerance to being out and about had built up quite nicely.  He was able to go longer without his anxiety stepping in or meltdowns or behaviors.  He was able to rely on Sunny and was able to voice what he needed from her when he was struggling.  As the year has gone on it's obvious that his tolerance to anything outside our house has dwindled greatly.  Something as simple as a walk around our block is difficult.  Forget outings in public.  We've got a solid 20 minutes before meltdowns set in.  And Tyler and I are back to directing Sunny when she needs to task as Charlie's insight has also been set back.  It doesn't help that his therapies were shut down for several months this year and that his amazing skills worker left shortly after the agency started seeing people again- a loss that left a huge hole in our hearts.  Charlie is down to one main therapist that he sees twice a week, which is better than nothing.  He remains on a wait list for a new skills worker, which introducing a new person into his life is never easy.  

We are warmed by the fact that we had seen such huge growth and we know we can see that growth again.  It will just take a lot of work from all of us to get there again.  Hard work that we are all used to by now.  

Then comes the holiday season.  This is always a tricky time to navigate for Charlie.  Disruption in routine, usually lots of traveling to visit various family, lots of time spent in other people's houses, usually large groups of people, loud surroundings resulting in sensory overload, changes in diet and people offering lots of sugar filled treats.  All of which create the perfect storm.  But this year has been different.  We are home, the 5 of us.  There is no traveling and no large groups of people.  We are able to control our surroundings and adjust accordingly if we see stress coming on.  Would we love to see all of our family?  Absolutely.  Would we love for our boys to see their cousins and their aunties and uncles, grandmas and grandpas?  Undeniably yes.  But this isn't forever.  Instead, we're choosing to find the joy and good in all of this.  We're healthy, we're together and we're happy.  Tyler and I still have our jobs.  We are still able to connect with our family in various ways.  We have a roof over our head, heat in our home and food in our bellies.  It's the simple things in life, folks.  We aren't dwelling on what's different or what didn't go our way.  Instead we are choosing to focus on God and the peace, joy, hope and love He brings.  

We always have a choice, friends.  A choice to dwell on the past or live in the present and hope for the future.  A choice to sit in a pit of unfair or a choice to find joy, even if it's in the simplest of things.  For me and my family, we are choosing to find the joy.  

Four Simple Words

Last week I got a phone call that completely warmed my heart.  It was my sister and she immediately told me about a friend of hers whose daughter was just diagnosed with autism.  Autism isn't new to my sister.  She's been an amazing Auntie to all three of my boys, including my 8 year old son with autism.  My sister knows how jarring a diagnosis can be.  The next four words she spoke weren't surprising in the fact that she was asking, but surprising for a completely different reason.  She simply asked, "how can I help?"  

I first started giving her ideas on what NOT to do to be helpful to this newly diagnosed family.  Suggestions such as; listen without judgement, don't offer advice- just be there for her, don't offer comparisons between her friends daughter and other kids, don't minimize what she tells you she's feeling or experiencing right now, and don't tell her lots of kids do the things her daughter does- as it likely isn't on the same level.  

Other suggestions came up too, such as offer to babysit or just be at the house so she can run an errand, go for a walk or simply take a nap.  Bring a meal on hard days or send her gift cards to places she can easily order take out from.  Check in often.  Play and interact with her little one, love her daughter unconditionally.  And most of all, don't give up on her.  

One thing autism families can agree on is how lonely the autism journey can be.  Many times our friends (and sometimes family) drift away because they don't understand autism and don't have patience to hang in there with us.  When an autism diagnosis is received, our world is turned upside down.  The last thing we need is people giving up on us. 

But as we talked it dawned on me how important those four simple words are, and how seldom some families hear them.  You see, some people freeze when they find out a child is diagnosed with something like autism.  They don't know what to do.  They don't know what to say.  Sometimes people are quick to do things they think are helpful, but really are counterproductive.  Instead, just ask those four simple words- "how can I help?"  It can make all the difference when someone goes out of their way to understand, learn, and find ways to be helpful and supportive.  

The Ghost of Christmas Past

I was up way too early this morning and found myself scrolling social media aimlessly.  I landed on the post of someone gushing about the magic they feel around this time of year.  How amazing their holidays are and how much they look forward to Christmas each year.  The picture on their post was from 5 years ago, the author said, and told about how the magic of Christmas is the same today for them as it was 5 years ago.  And then the author asked "what was your life like 5 years ago?"

I stopped and thought for a moment, pulled back in time.  5 years ago our oldest son was 4 and our twins were 3.  It was a punch in the gut when I realized my first thought was how hard things were back then.  Instead of thinking about the magic and happiness of the Christmas season I was immediately thrown back in time when sleep was evasive, meltdowns were constant, we were afraid to leave our house and even worse, we didn't know how to help our son.

We were in the trenches of autism.  We didn't know it because at that time our son had yet to be diagnosed.  We knew nothing about autism.  We were in survival mode back then, doing anything we could to just survive each day.  Some days we had to take things hour by hour.  That may sound drastic, but it was our reality.  

During my time down memory lane I remembered how our son almost always had a scrape on his forehead from banging his head so often, getting into the car to go anywhere was like torture to all of us- car rides were very hard- and we heavily weighed the pros and cons of any family outing, and this kid was practically attached to me 24-7.  Back then we were learning about sensory issues, sensory diets, weighted blankets, noise cancelling headphones and we were entrenched in OT which was a safe place of learning, exploring and guidance from one of the best Occupational Therapists we could have ever known.  That was also the year our son started special education preschool where we met one of our family's biggest advocates and most loving teacher ever.  

It was during these times that a coffee mug became an extension of my arm- always filled with life preserving caffeine.  Disregulation lasted for hours, sometimes days.  Visits to our family during Christmas was hard.  We couldn't stay long and if we tried to stay longer than our window allowed, it would mean more chaos, meltdowns and a disruption in whatever sleep we were getting. And Christmas presents revolved around the few interests he had at that time- trains and boxes.  Pictures also showed me that amidst the hard, we did have lots of smiles.  

This trip down memory lane also showed me how far we've come in the last 5 years.  With an autism diagnosis at the age of 4 came resources we never would have otherwise had.  We've learned coping skills and he's learned social skills.  We've been introduced to people who have made profound differences in our life.  We progressed to being able to go places outside our home and have even traveled a little bit over the years.  We sleep a little more than we did back then, but coffee still rules my mornings.  

This year we won't let the Ghost of Christmas Past rule our memories- but instead let it
help us realize where we've come from.  Maybe this year we can focus on the magic of Christmas Present a little more.  And maybe, just maybe catch a glimpse of Christmas Yet to Come, which I imagine could be a beautiful place.  

Find Your People

When our son Charlie was diagnosed with autism at the age of 4- almost five years ago now- we were so lost.  We had no idea what we were doing, where to go for more info, where to find help, or who to talk to to find out what we should expect. We had no one to guide us on this unexpected journey.  It felt like walking into a new world completely blind.  We didn't know where anything was, tripped a lot and got lost.  

But we kept walking.  We kept fighting.  We kept searching.  No one in our life knew what we were going through.  We tried many different options for therapies from professionals.  Some were helpful, some were a complete joke.  The problem was, the majority of the professionals we met didn't understand either.  They knew what they were taught from textbooks.  Not real life.  There's a huge difference- living it vs. reading about it.  While some have been helpful in some ways - they are not our people.  

Before diagnosis, at age 2, were connected with our local Birth to 3 team who worked with both Christian and Charlie on areas they were still behind from being born three months premature.  While they did some amazing work with the boys we told them of some of the concerns we were seeing with Charlie.  They saw it too, but they weren't quite sure what to tell us.  In fact at one point they told us not to worry because it definitely wasn't autism because he made such good eye contact.  What did we know at that point?  Nothing.  Eventually Charlie aged out of their program and we were forced to look for more help.

We started exploring several different therapies- PT and OT were the first two therapies that proved to be helpful for us and gave us so much knowledge.  But then our insurance stopped covering their services. We were crushed.  They were our people.  After being on lengthy wait lists for other therapies we were introduced to Charlie's main autism/family therapist.  To make a long story short- 4 years later and we are still working with her today.  She's nothing short of amazing.  She is our people.

About a year after diagnosis we found a local support group for parents.  Tyler and I checked it out and thought it could work, until it didn't.  It seemed like the people in the group had already formed relationships and didn't need any new-comers.  Unfortunately we didn't feel very welcomed.  To be honest, it stung a little.  I mean, aren't us parents supposed to stick together? Those were not our people.

When the boys were really little we started searching for a new church to call home.  Someone suggested a certain church in our neighboring town.  We went a few times to get a feel for it.  It was different than what we were used to, but kept going, we really liked it.  And they had an amazing kids ministry.  We knew no one when we started going there but we were welcomed with open arms and fully embraced.  We even had a couple teachers who took the time to get to know the boys and what would help Charlie separate from us and be successful with his peers.  This blew us away.  Without these people we might not have stayed.  We are so glad we did.  These are our people. 

A few years ago a local group called Ironwood Springs Christian Ranch wanted to do a test run for a Summer autism camp where families could come together, shed the discrimination, stigma and stares and just have fun as a family.  We were lucky enough to get in and what we found when we got there was incredible.  We found we were welcomed from the moment we walked in and with no judgements.  We were surrounded by other autism families who understood our journey.  We didn't need to explain our journey or apologize for behaviors.  They just knew this different life.  We have gone back to that Summer camp every years since then.  We've met some great friends at that camp.  These are our people.  

Then one night my husband was scrolling through Facebook and stumbled across a video from Kate Swenson.  She has a Facebook page called Finding Cooper's Voice.  My husband watched the video and immediately told me I needed to watch.  I did and with tears in my eyes I told my husband, "she gets it." She lives autism daily like we do.  I spent the next couple of hours on her page reading posts and watching videos.  I knew right away I needed to get to know her. That was several years ago now.  Along the way I've not only found Kate, but a whole tribe of supportive and understanding men & women who also understand life with autism.  These are our people.  This is our tribe. 

When we started this blog we only intended to use it to educate people on why we were fundraising for Charlie's service dog.  But it's become so much more than that.  Even after fundraising we kept the blog going.  It's helpful for Tyler and I to express our wide range of emotions and experiences, but we also want to bring hope and light to other families who might be at the beginning of their journey.  We don't want people to feel lost like we did.  If you haven't found your people yet, I encourage you to keep searching.  Because when you finally find them, it will be a beautiful thing.  

The Day Mom Lost It

Today I lost it.  I'm not proud.  

It's been brewing for awhile.  I can see that now.  Afterwards, anyway.  The culmination of this last year has taken its toll; the change in school routine from public school to homeschool, not seeing their friends on a regular basis, sports being canceled, change in routine in general.  It's been hard and it's finally come to a breaking point. 

The last several weeks my boys have not been themselves.  They constantly fight, argue and scream at each other.  They have been defiant, disrespectful and rude.  They complain about everything.  This is not how they typically act and it has been wearing us all down.  I've worked with them on these things, trust me, I have.  We work on it daily.

I normally can keep it together.  Despite homeschooling the boys, working from home 30 hours a week, keeping up socially, scheduling and attending appointments and therapy schedules, monitoring and working with autism daily, helping navigate health issues and doing all the things needed in maintaining our home, I can usually keep it together. 

The things we do to get a little "me time" (she says as she locks herself in her closet-the only room in the house that's kid free)

But today I couldn't keep it together.  The day started with arguing and fighting from the start.  Then there were autism meltdowns that needed redirecting and rigid behavior that needed monitoring, all before breakfast.  After breakfast we started our school routine. And things continued to spiral downward from there.  I broke.  I yelled and cried and locked myself in the bathroom for 20 minutes.  The boys saw it all.  Part of me despises that.  The other part of me thinks maybe that's ok.  

How did we get here?  My sweet, caring and thoughtful children are not themselves. They've turned into gremlins.  And if I'm being totally transparent here, I've been feeling invisible lately myself.  Sort of like standing in a crowded room screaming at the top of your lungs and no one hears you. Except it's day after day working myself ragged doing ALL THE THINGS. 

During my 20 minute time out I realized we need to change things up.  We need a fresh perspective.  At the beginning of our homeschool adventure I was most excited to take time and attention to building the character of the boys.  Today I feel like a failure.  Their actions do not reflect what we've worked on.  I know this is just a small blip in time.  I know we can turn things around. A little extra hard work is all we need.  A little intentionality can go a long way for the things that are most important in life. 

Tomorrow is a new day.  I'll get up and do it all again- hopefully better.  Because that's what we do as moms, right?  We get up, we show up and we get things done.  Jesus, take the wheel.

Our Saving Grace

 I'm well aware our updates have been few and far between these days.  Truth be told, we're over here just surviving.  Since we decided to homeschool the boys this year my days are filled with teaching the boys in the morning and then still working part time from home the remainder of the day.  There is not a lot of down time.  It's simply going from one task to the next, day after day.  Constantly.  Most days I don't know up from down.  

One thing I do know, Sunny has been our saving grace during this strange time.  So many things have changed since March.  The boys switched from public school to homeschool, Charlie went from 3-4 days of therapy per week to 1 day.  Charlie's skills worker left and we are down to one main therapist for professional support, we have went from working on all the skills out in public to barely going in public at all, and now losing some skills with an increase in rigidity.  We went from doing amazing when we leave the house to having very little tolerance to anything outside of the house.   Tolerance to having mom away to little or no tolerance for mom to even go to the grocery store for an hour. Tough times. But one thing has remained constant: Sunny. 

Charlie and Sunny have had the opportunity to strengthen their bond since they are together 24/7.  Sunny goes to bed with Charlie at night and wakes up with him in the morning.  Sunny helps him stay calm and get through his school work each day and Charlie finds fun games to play with Sunny and we have seen Charlie's confidence in handling Sunny has grown.  There have been numerous times where I think the day is lost to meltdowns until Sunny completely turns it around.  I can't even express the magic this sweet girl works on Charlie.