The Hard

I think it’s safe to say we’re in the thick of a hard season. With autism, the hard can ebb and flow. But it hit me tonight that we’ve been in this place for awhile now. Months maybe. The hard does not discriminate. It’s affecting everyone. Especially siblings. Sometimes we can pinpoint the problem, the triggers, the tipping point. But this time it’s likely the culmination of many things; the unstructured summer months, recently coming home from vacation, the transition back to a school schedule, and the biggest reason- a year of a huge decrease in services. A year ago we lost staff that helped Charlie several days a week. That loss has been incredible and we’re steadily seeing the downfall from it. Today when I called to see where he falls on the wait list for a new worker, I was told he’s half way down the list and they aren’t sure how fast it will go. The woman on the phone used phrases like “nation wide mental health crisis”, “worker shortage”, and “high demand”. It would be the same story even if we tried going to a different agency. Something needs to change. Something needs to be improved. Because my son, and thousands of others like him, are the ones on the short end of that deal. #fcvblogsquad #sunnytheservicedog #autism

New Hope

When Charlie was 4, before he was diagnosed with autism, he was referred to Occupational Therapy (OT) to help give him and us as parents, tools to better help him. At that time we were drowning. We had no idea how to help him regulate his body, help him sleep better or manage his daily meltdowns. At that point we had a social worker, a therapist, a special ed team and a developmental pediatrician involved. The wheels were in motion to help us figure out our complex little boy, but we hadn't found the right combination yet. Until OT. OT was the magical key to unlock some of the mysteries we couldn't figure out. Charlie had a wonderful occupational therapist who was patient, knowledgeable, insightful and all around amazing. She was able to engage Charlie in ways most people were not able to at that point. Assessments showed Charlie had sensory integration difficulties which played a huge part in him regulating his small body. The OT showed us how to implement a sensory diet with him- various sensory activities to do with him daily to help him calm his body. She showed us the importance of Charlie moving his body in order to stay calm. We tried different calming techniques to help him during a meltdown or to implement at night to help him sleep better. Some helped, some didn't. But it's safe to say that OT was the first place where we felt hope. We felt seen and understood in our struggles. And Charlie had so many great gains during OT.

OT ended when our insurance changed the next year and no longer covered his sessions. It was such a big blow when we knew OT was working so well for him. But there was no way we could pay out of pocket for his sessions. Flash forward 6 years. Charlie is now 10 years old. A month ago Charlie started a new program called Adaptive Athletics. While it's not considered OT, I see similarities and many benefits. Adaptive Athletics is a new service in our area that gives kids one on one classes for adaptive mobility, strengthening while focusing on functional movements. Charlie has never been one for sports or organized physical activity, but I thought it was worth a shot. Charlie was skeptical at first when I told him about it. He seemed to be ok when I told him I wanted him to try it four times, which is one session, and if he really didn't like it, he could stop. Charlie walked into his first class a little nervous. When he doens't know what to expect it raises his anxiety. But when Coach Taylor started engaging with him and talking legos, the rest is history. You see, I've noticed Coach Taylor has a way with kiddos like mine. He puts them at ease and accepts them where they are. He breaks down the movements to make them manageable all the while pushing them just slightly so they grow in their strength and movements. Our goal for Charlie was to get him moving, expose him to different sports and exercises and to give him the sensory input we know his body craves so he can be calm. Well, he's on the second session now and loving it! In the time Charlie has been going to Adaptive Athletics we've seen his coordination improve, he's more willing to try different physical activities, his body is calm, he's eager to engage with others within the community, he's learning to be flexible (being ok when things get changed up), and his confidence is soaring. Charlie has so much fun during his classes he counts down the days until his next class. I'm so excited to watch him grow in the next several months.

Push and Pull

Over the years we’ve learned when to push our son’s limits and when to stay put. Autism makes it a tricky dance some days. We’ve had a busy weekend with home projects, yard & garden work, and a couple graduation parties. He did well Saturday running errands and at the first graduation party, but today looks different. Today will likely look a lot like what is pictured here. Downtime and deep pressure therapy from Sunny are almost like a necessity after a busy schedule. Kind of like food and water are essential for survival, rest and recuperation are vital for Charlie’s ability to regulate his body and behavior. We have the second graduation party today an hour away from where we live. And we know today is not a day to push him past his limits. If we did, we know the outcome would not be good. So, today, we divide and conquer. Because that’s what our family needs today in order to thrive.

Last Day of School

Celebrating the last day of school with Dairy Queen blizzards! We ended our second year of homeschool and I couldn’t be more proud of each of their progress this year. As we talked about our year they effortlessly came up with goals for the Fall when we start year three. Things like music lessons, Spanish, robotics, coding, computers, and more time with friends were things they look forward to! I love their growth and their eagerness to learn every day. They definitely make this lifestyle worth the hard work.

Hard Work Pays Off

The most common question I get is: how did you start doing things in the community more? I will tell you, kind friend, it hasn't always been easy. Going out in the community as a family or even one on one with Charlie has been a work in progress over the years. Being safe and calm in the community are skills he has worked hard on for a long time. There was a time when we rarely took the boys out to do activities, and defnitely didn't take them out alone. Charlie had a very hard time regulating his body and emotions and couldn't be safe. He was a risk for eloping, riding in the vehicle even a short time was hard and sometimes unsafe as well. But with the help of some of his therapists we started working on skills so he could be successful. Things didn't change overnight. It took a lot of time. Some days we were successful, some not. There were times we really had to push because we knew we needed to, and other times where we had to pull back and take a break from going out. And this is a process we still go through. The times we pull back are always hard, feeling like a regression or that we're all standing still. But those are also times where we can sometimes see huge growth too. Sunny, Charlie's service dog, has also made a huge difference with Charlie. Sunny is Charlie's constant and helps him through transitions, she helps him stay focused and calm on car rides and helps him be safe in the community. The biggest regression we've had though was when Covid started. When time stood still and everyone stayed home. On one hand we knew we were already experts at being home a lot. But on the other hand it meant regression in some seriously hard earned skills. When we started leaving the house again it was an adjustment. Charlie had a hard time being out and about for more than a half an hour at a time. That was his limit before things went south. So, we started working hard on skills he needed to be successful and safe in the community. Except, this time, Tyler and I did it alone. Therapists and skills workers left their jobs at alarming rates over the last two years which left Charlie with very little therapy time. Yesterday was Mother's Day and my one request was to go out to do something. You see, I'm home with the boys all day everyday. I wanted to do something different and fun for Mother's Day. I knew there was a chance that the outing could be more work than fun, but I was willing to try. It turned out to be a good day. We went to a history museum with lots of hands on activities. Charlie rode in the car an hour and a half each way without a meltdown, we navigated the museum, he walked safely on the sidewalk to the restaurant we ate at, waited calmly for his food and didn't have to leave early. Did we have bumps in the road during our day? You bet we did. But we expected them and managed them as they came. What I'm trying to say is don't give up mama. Don't ever give up. Take a break if you need to, but then try again.

We Did It!!

We did it!  It really happened, and it went well overall!

Our family took a trip to Disney World in Florida a few weeks ago.  Now, if you know our family, you know what a big deal this is.  This was the boys' very first real vacation and the first time on a plane for two of them.  

This trip has been a long time in the making.  We've spent years working on various skills with Charlie in order to make traveling a reality.  I'm talking years of trial and error, practicing coping skills and socialization skills.  Practicing safety in the community and communication skills.  Practicing traveling (yep, it's a real thing in our family) and how to keep your body and mind regulated and grounded when everything around you is different than what you're used to.  

I know what you're thinking....'wow, Disney World for your fist vacation'.  Yes.  We like to go big or go home in this family.  Anything worth doing is worth doing right.  So we went for it.  

Were we nervous.  Yep!  But we made it happen.  Traveling as a family has been a big goal of ours.

We did all the things at Disney (or as close to it as possible) which meant late nights and early mornings.  Charlie thrives on routine so anything outside of his routine can be extremely difficult.  Charlie loves to know the plan.  He needs to know what's coming next after each step so he can prepare himself.  We tried to lay out each day for him, but sometimes plans get derailed.  He did well with changes with lots of support and positive reinforcement.  

Long travel days required lots of patience 

We had long travel days and lots of sensory overload.  There were tons of rides and lots of excitement.  There was waiting and change of plans (both hard for Charlie).  We had lots of togetherness and a bunch of goofing around.  There were attitudes yet lots of smiles and laughter. 

We also took lots of breaks and adjusted as needed.  Tyler and I both know this is critical for success.  We handed out grace like it was candy.  

Charlie & Sunny taking a shade and water break

We definitely wouldn't have been able to make it through this week without Sunny.  She was a big part in this trip's success.  She worked her tail off with Charlie all week long and then slept like a log every night.  She was even able to go on quite a few rides with us!

Sunny riding on the People Mover ride

Sunny takes her job seriously and this trip was no different.  She did her tasks when needed for Charlie and we saw such an incredible response from Charlie.  The tasks Sunny does for Charlie absolutely help him without a doubt.  We see shortened meltdowns, increased flexibility in thinking (sometimes), increased ability to feel grounded, more centered and focused, and less anxiety.  I mean, take a look at that Deep Pressure Therapy (DPT) going on in the next picture!  

Instead of being thrown off course for the rest of the day and needing to head back to the hotel, Charlie was able to have Deep Pressure Therapy from Sunny to help his body feel grounded and connected to the space he's in, less overwhelmed and more safe.  Within ten minutes we were on our way to another activity. Yay Charlie & Sunny!!

Deep Pressure Therapy

No doubt we were all exhausted after a busy week.  It took over a week for us to get back into routine.  Reflecting on everything, I get a little emotional seeing how well everything went.  Sure, we had some bumps in the road, but we worked through them.  The things that stick out the most are the fun, the smiles and laughter and how far we've come.  

I Am More Than a Caregiver

 I am more than a caregiver. 

Do you see me?

I am a mother. I have three boys, each with different needs. Each one unique in their own way. 

It’s true our life is different than most. The amount of time spent juggling therapy schedules, coordinating appointments, filling out paperwork, fighting for services and dealing with staffing shortages is a full time job. Most days it feels as though I’m just a caregiver, all business to make sure my kids have what they need to succeed. 

But I am more than a caregiver. 

Do you see me?

I’m a mom who wants to do the fun things with my kids like going to the zoo, taking last minute road trips, traveling, going on adventures, and listening to them talk endlessly about their favorite sport or the slumber party at their friend’s house. 

But my reality is much different. 

My reality is navigating meltdowns, redirecting obsessive behaviors, teaching calming techniques to lessen episodes of anxiety and modeling socially appropriate behavior. 

My reality is patching holes in our walls on the regular, explaining autism to siblings, friends and family, and redirecting self harming behavior. 

I am more than a caregiver. 

Do you see me?

I’m the one who is up before first light and most definitely last to bed. I’m the one making endless searches for more resources, tools and opportunities for my kids. 

I’m the one who puts friendships to the wayside because my family’s needs are so great. I’m the one whose needs are usually put last, because at the end of the day there’s just no energy for anything else. 

I’m the one always trying to be two steps ahead or waiting for the other shoe to drop. I’m the one defending my kids to others who just don’t quite understand. I’m the one always looking for the next intervention tool that will work. 

I’m the one in the middle of my family keeping it all together, because if I don’t, I’m not quite sure what will happen. 

Do you see me now?

I am more than a caregiver. 

Awkward Moments Like These

 The world of autism can be a strange place.  Especially for parents like me who are just trying to understand our kiddos, give them the best in life and navigate the ins and outs of a life lived differently.  The most typical experiences for some can often be the most unusual for families like ours.  

Last weekend we wrapped up my oldest son's hockey season.  He participated in his last tournament for the season and had a team party after his last game where parents and siblings were included.  It was held at a local restaurant that was very busy, I mean any place will be busy when you bring 14 families together.  

All of the kids gathered together between two tables- hockey players and their siblings.  The parents gathered together at the remainder of the tables that were reserved for our group.  This is a group of families that have had a great season together, have gotten to know one another well and have really spent a decent amount of time together in the last six months.  All of the kids and their siblings get along so well with one another.  Everyone includes everyone here.  And it's such a wonderful thing to see.  

My boys grabbed a seat with all the other kids.  Sunny laid under the table at Charlie's feet like she usually does.  

And that's where the similarities stopped.  

The other parents grabbed their seats, letting their kids do their own thing.

There I stood.  Awkwardly in the middle of the walkway next to the kids table where Charlie and Christian sat.  You see, it's not as easy as me grabbing my own chair at my own table.  Charlie needs help with Sunny occasionally, he needs help figuring out what he wants to order and then help ordering it.  He doesn't follow social cues well and isn't always sure how to handle certain situations.  I need to be near in the chance he starts to escalate and needs help problem solving. 

I felt so out of place in that moment.  I didn't want to take the seat next to Charlie and be the only parent at the kid table.  And I didn't want to make him come sit with me at an adult table. I do want him to be able to interact with the other kids.  I don't want to be a hinderance to that.  I want him to grow and blossom socially.  But I also knew I needed to be close.  It was just the day before when he struggled and needed someone to order his meal because he wouldn't speak, hold his hand in the parking lot to make sure he walked safely, talk him through some deep breathing when things didn't go as planned and needed silverware removed from the table because he was not using them in a safe manner. We never know when these struggles pop up.  So we need to be close, ready to help at a moment's notice.  

I eventually grabbed a seat at the bar portion of the restaurant where I had full view of Charlie and a straight shot to his table if I needed to help him.  Another awkward moment as all the other parents sat together, ordered their drinks, lunch and talked about the season wrapping up.  I felt, and probably looked, like a loner.  They weren't intentionally leaving me out and I wasn't intentionally trying to avoid them.  

I guess maybe I should get comfortable with awkward moments like these. Because no matter how we spin it, our life is different.  And that's ok.  

As for Charlie that day, he made it quite awhile hanging with the other kids before joining me.  He was getting too overwhelmed with how loud it was in there, he hated how sticky their table was and he needed constant reminders that yes, we did order our food and yes, it will be coming soon. 

The positive?  We were together as a family, we were able to join a group setting and we were in public and didn't have to leave early.  I'll trudge through those awkward moments and also call it a win.

Self Care

We've all heard the term self care and how important it is for each and every one of us.  There's thousands of books written on the topic of self care, but for some reason it's hard for some people to do.  As a parent of a special needs child it's so easy to put myself second, third, or most of the time, last.  Have you heard the phrase 'you can't pour from an empty cup'?  It's true.  If you have nothing left to give, how can you help those you care for?  

But, it's easier said than done, right?  For special needs parents there's a lot that goes into self care.  It's more than just finding what fills your cup.  Many times self care involves a lot of prep before you even get to do the self care part.  Finding appropriate child care, getting meals prepped, medications sorted, lack of sleep, or sometimes even prepping your child that you'll be gone.  These are just  a few reasons why self care for the special need parent goes to the way-side.  Sometimes it's more work prepping and doing the self care than it is to stick to your routine and go on with your day.  

But I beg you....do the self care!

You need it. 

You deserve it.

Self care doesn't need to be taking a bubble bath or reading a book.  But it also can be if that's what you like!  Self care is going to look different for everyone.  If you don't like taking baths, that's probably not going to be at the top of your list of things to do to relax and unwind.  Find what fills your cup and then do it as often as you can. 

Maybe your self care is taking an uninterrupted shower or actually doing your hair.  Maybe self care is getting to sleep more than a few hours at a time or being able to drink a cup of coffee without it going cold.  Self care can be something as simple as painting your nails, reading a book, meditating or doing a puzzle.  Maybe it's enjoying a glass of wine or a cup of tea after the kids go to bed.  Self care can also be going out with a friend or family member for a couple hours, getting out of the house by yourself, buying yourself a cup of coffee you didn't make, going to get your hair cut, or for some people it can be going to the grocery store without a kid in tow.  My point is, self care looks different for everyone.  Don't worry if your self care doesn't look like everyone else's.  It's meant to fill YOUR cup, not your neighbors.   

What did I do for self care this week?  Last night I laid in bed while my husband folded a basket of laundry.  You might chuckle, but that is something really hard for me to do!  I'm usually the one finishing laundry in the late hours of the evening, not laying in bed letting someone else take care of it!  But it doesn't stop there.  This morning I coordinated child care so I could go get a massage and then after the massage I grabbed a cup of coffee BY MYSELF!

Self care doesn't need to be anything big or extravagant.  Or it can be if you want it to be.  Just know that sometimes the little things help fill your cup the most.  I know I'm not good at consistent self care yet I'm going to keep trying.  Why?  Because I deserve it.  And you do too.

I'm Fine. We're Fine. Everything is Fine.

It's -10 degrees where I live in Minnesota as I write this.  The windchill is worse at -27.  It's been like this for much of this past week. 
It's too cold to be outside for more than a couple of minutes.  The boys have endless amounts of energy with nowhere for it to go.  This is the time of year that gets hard for us.  Cabin fever sets in.  Throw in the fact that Charlie hasn't had any services since before Christmas....well, you can about imagine how things are going right now.  

Between holiday schedules, staffing shortages and Covid exposures Charlie has been without his therapies for several weeks now.  And we are seeing the down-hill slide.  Of course Tyler and I use every tool in our tool box to help him and get him through the tough moments, but his therapies are part of his routine.  And Charlie is very much about routine.  He is also aware that a new person is supposed to start working with him in January, so he asks us every day when that person will be coming.  

Charlie's thinking is very black and white so when someone tells him a new therapist is coming in January, he expects them in January.  He is very concrete in his thinking.  His mind doesn't think about all of the other possibilities that could derail their planning.  And his mind definitely doesn't comprehend the fact that someone could start "around January" as in - could be January, could be February.  

But between all the anxiousness, negotiating, de-escalating, sensory activities, and therapy tools there are moments of beauty too.  He's the child who is stuck to my side constantly, wanting snuggles and movie sessions.  He's the kid who has non-stop chatter about this and that, who wants to show off his lego creations and tell me every detail about how he built it.  He's the child who can artfully avoid any activity he doesn't want to do. He's a master negotiator who keeps all of us on our toes.  

All of our boys bring the brightest joy to our family, to our home.  Focusing on their smiles and laughter and unique personalities doesn't make the hard go away, but it's what can help bring us through.

Guards Down

We need to remember not to forget. But we did momentarily. We let our guard down. We forgot how hard it is for Charlie to be away from mom. I didn’t realize how long it had been since mom had a night out. 

I ended up going to see my childhood friend yesterday afternoon and then spent the night catching up. I was gone for exactly 20 hours. Less than a day. I haven’t done anything like that in several years. I gave all the boys a heads up earlier in the week that mom was going to be gone for the night. But I forgot to properly prep Charlie. 

Charlie needs ample time to process a change in routine like this. He needs to be told more than once about the change. He needs to know all the details; what time mom will leave, what he will do while mom is gone, what time mom will return, etc. He needs reassurance mom will return, he needs it marked on the calendar, he needs a reminder to utilize Sunny if he’s upset and sometimes he needs something of mom’s to hang on to while I’m gone. 

I’m his person and when his person is gone it throws his entire universe upside down. 

But I forgot. I forgot how much prep he needs. We’ve been out of practice for some time now and I let my guard down. 

To say the night was difficult at home would be an understatement. Dad does everything he can to smooth things over, but in Charlie’s eyes, he’s not mom.  

The night entailed several FaceTime calls with reassurance, virtual hugs and kisses and lots of love. It’s just not the same as in person. I reminded Charlie over and over I’d be home right away in the morning. 

I held true to my word. Everything is right in the world again. 

Something to be Thankful

It wouldn't be Thanksgiving without an article on being thankful would it?  Right.  So here it goes....

It's true there's so much to be thankful for each and every day of the year.  But lately I've been thinking about how grateful I am for one specific and important person in my life.  My husband Tyler.  And if you think "oh great, here comes the sappy post", you are absolutely right.  It might.  The sap may drip a bit heavy here.  Bare with me. 

I'm not sure where I'd be without him in this crazy life.  Especially when life seems upside down and sideways.  He works incredibly hard to make sure his family is taken care of and he is quite the amazing dad to our boys.  

He's the builder, the fixer, the maker and master snuggler.  He's our adventure leader, creativity director, think-outside-of-the-box guy and makes us laugh every single day.

But even more importantly he stands right next to me through the good and bad, encourages me when I don't think I can take one more step and holds me up when I can't stand anymore. 

Life would certainly be less adventurous, not as funny and unbearable without him.   

Cheers to our crazy life, babe.  Thank you for being by my side throughout it all.  Love you.

All I want For Christmas

It's that time of year where family is hounding me for Christmas gift ideas.  There's a slight problem...

1- I don't have time to shop or pick things out for myself and 2- It's hard for me to come up with ideas.  I'm a pretty easy going person who doesn't need a lot.  Give me some wine and some Netflix binging without kids and I'm golden.  But then I got to thinking about it and there really are some things I would like.

A full night of sleep.  I'm pretty sure my body is incapable of ever sleeping a full night again.  After 10 years of not sleeping I think my body has just given up.  Well, hello 4am, I'm sorry but I think we need to stop seeing each other.  

A lifetime supply of coffee.  Need I say more?

A laundry attendant.  Why do we have so many clothes?!  I can't be the only one who has considered moving to a nudist colony.

A personal chef.  I don't know about you, but I'm so tired of cooking.  Everyday.  Multiple times a day.  I'm over it.  

And

A crystal ball.  I don't need to know everything that is going to happen in the future, but I would like to know when something completely unexpected is coming.  You know, the kind of things that come completely out of left field that throws you off your game?  Yeah, we've had our fair share over here.  The most recent one has me reeling, a little baffled and also wondering how next to put one foot in front of the other to keep going.  But I will.  Because that's life, right?  That's what we do.  There's no giving up.  No matter how exhausted we are, we keep going.  We keep putting one foot in front of the other.  

My list isn't terrible.  It's also not realistic, but one can dream.  

Siblings

I don't think people talk enough about the siblings. The siblings who are there day in and day out. Those who sometimes get the brunt of things or maybe less of mom and dad's undivided attention. These are the kids who sit back and watch their sibling struggle. Or maybe they're the kids who are hands on and help as much as they can. Either way, they deserve the spotlight too.

Today our living room turned into a giant craft station because crafts are Christian's love language and this was his time. His time to talk about the hard of having a brother with autism. This was his time to talk about the unfair, the misunderstood, the frustrating and the sad. Because he deserves to be able to vent and process things with someone he trusts.

I Wasn't Prepared

I was prepared to be a mom, to a point.  You can only prepare so much for something you haven't done before.  When my first son was born I was prepared for sleepless nights in the infant stage.  We had all the baby things you think you'll need, all the tools to make parenting a little easier when that baby comes home.  

But a year later, 13 months to be exact, our twins arrived.  They were born three months early.  I wasn't prepared to have preemies or sit in a hospital day after day for over 100 days.  I wasn't prepared to juggle a little one at home and two babies in the hospital.  I wasn't prepared to watch them fight for their lives.  

I wasn't prepared for the chaos of having three kids age one and under, two of which were small fragile infants who got sick easily.  I wasn't prepared to spend so much time at the doctor's office those first few years of their lives.  I wasn't prepared for my baby to undergo surgery when he was only 5lbs. 

I wasn't prepared for years and years of sleepless nights or for a baby who was never happy unless he was being held.  I wasn't prepared for the level of exhaustion my husband and I reached, the exhaustion we sometimes still have.  

And I wasn't prepared for an autism diagnosis.  That one blind-sided me.  

I wasn't prepared to walk a road where there were no easy answers, a road that no one could lead me down.  I wasn't prepared for the isolation and loneliness or for friends to slowly and silently walk away.  

I wasn't prepared for behaviors and aggression, for early intervention, special education and endless therapies 5 days a week.  

I wasn't prepared for hundreds of holes in the walls, daily destruction, sibling rivalry or for a child who just doesn't understand.  

I also wasn't prepared for this level of love that I feel for my children.  I knew I would love them, but at this magnitude, I had no idea.  

I wasn't prepared to go to the ends of the earth for my kid, to get him every possible intervention that would help him and to help the rest of the family.  

I wasn't prepared for their amazing personalities, each one individual to themselves or the mesmerizing talents they each have.  I wasn't prepared to be so awe-inspired by them every single day.  I wasn't prepared for kids who are daring and have no fear and crave adventure every day.  

I wasn't prepared to learn so incredibly much from them.

I wasn't prepared to see the world through their eyes and see how different and scary the world can be. 

I wasn't prepared to be the one to try and change the world for them.  

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.  

Asking For Help Doesn't Make You Weak

See this picture here?  This is a teary-eyed, tired, stressed out mom hiding in the bathroom to get a hot second to herself to regroup and refocus during a hard moment.  I'm sure some of you can relate.  Arriving at this moment didn't happen overnight.  No, it's a culmination of many hard moments built up until a breaking point.  

Let me set the scene; It was May of 2012 and my husband and I were bringing our premature twins home after being in the NICU for three months.  We had these tiny babies who needed a lot of care and attention and our 16 month old son who needed just as much care and interaction with us.  To say it was busy would be an understatement.  After being home for some time I started experiencing frequent bouts of anxiety and symptoms of PTSD.  I felt like I was a bad mother because I should be able to easily take care of my babies, right?  I quickly learned that asking for help does not mean you are weak, or less than, or a bad parent.  My husband and I are not always good at asking for help, yet we recognized that we could not do this alone.  As hard as it was, I knew I needed help for myself and found a doctor to work with.  Family and friends answered our calls for help and we couldn't have been more grateful in that time of need.  

Fast forward a couple years and you'd see a couple of parents who were down right burned out.  We had three boys ages three and under; one who hadn't slept through the night since being born, who co-slept with us (despite our adamancy that we would "not be those parents"), who needed to be held constantly and started showing some very concerning behaviors.  We had no clue what to do, where to go or who to talk to.  But we knew we needed help.  As we started talking to our pediatrician about our concerns we started on the road to help our son, which lead to an autism diagnosis at the age of 4 and eventually, we found an amazing team of people to work with who truly made a difference in our lives. 

Skip ahead another year or two and we were living life.  Not the life we had imagined, but it was our life.  My husband and I agreed that we had family support, we had a team of people who worked closely with our son and family, and we had made some great gains.  But there was still something missing.  We didn't have any friends or acquaintances who truly understood autism and the struggles we face every day.  We didn't know any other autism families.  We didn't have people we could hang out with where we didn't need to apologize for a behavior or explain why our son was doing something a little odd, or having to duck out early to avoid a meltdown.  We had friends we could vent to if needed, but they truly didn't understand what we were venting about.  Most times we'd get the brush off which made us feel worse.  Until one day we found a video of a fellow autism mom online who talked about things we knew and lived every day.  Finally, we had found someone like us!  And that one video opened up a whole new world of support for us.  We didn't feel so alone any more.  We had found our people. 

May is mental health awareness month and raising awareness of mental health needs among special needs parents is important.  Studies indicate that parents of a child with special needs reported poorer self-rated mental health and greater depressive symptoms than those of parents with typically developing children.  More importantly, parents of special needs could tell you this without looking at a study.  Because chances are, they've lived it.

Don't be afraid to reach out for help.  Whether that's asking friends, neighbors or family for an extra hand, finding help for your child, seeking out a doctor or therapist for yourself, or leaning on someone who completely understands.  

Asking for help does not make you weak, it makes you strong.  Asking for help highlights your deepest strength. 

The Impact is Real

Service dogs make a huge impact in their person's life.  We know that now more than we ever have before.

This last week has been challenging in so many ways.  We've had a handful of outings outside of our home that Sunny was unable to accompany Charlie to since she is still healing.  Even at home, Sunny has not been able or up to doing tasks for Charlie. 

The biggest challenge has been the increase in behaviors and disregulation with Charlie.  We've seen meltdowns of epic proportion this week at a level of intensity that we haven't seen in awhile. We feel this is largely due to the stress of seeing Sunny hurt and the fact that Sunny has not been able to do tasks for Charlie this week.  It's been a little eye opening to see just how big of an impact Sunny has on Charlie's day to day life.  Without her, things have been tough this week.  It's a little heartbreaking to see the backward slide.  Just when you take two steps forward you get pushed three steps back.  

Sunny continues to heal from her injuries.  It's been slow going, but today she seemed more like herself.  She got to go on a short walk today to help her stretch her legs, but not long enough to over do it. She did well and seemed happy to be out of the house for a bit. Hopefully we'll see more improvements in the coming days.