The Last Ride
Thursday was Josh’s final day of school. He grew to really love his bus rides over 23 years.
The photo above left is his first ever bus drop off, above right is the last.
While we are sad to see this phase of Josh’s journey come to an end, we are excited to find what the future holds for us!
Happy Friday and we hope you all have a great weekend!
Tom, Sarah & Josh 🍀
Graduation Day
It is hard to believe that six years ago our daughter, Leah, graduated high school. It’s crazy how fast time flies by. Leah and Will are now married and living in LA, young adults on the go.
Leah and Sarah, Webberville High Commencement May 2019
Leah+Will with their friends Marlena+Noah, California 2025
Yesterday Leah’s older brother Josh graduated from his school. Here in Michigan, young adults with special needs are eligible for public education until age 26.
Some of the emotions we feel as parents now are similar to what we felt in 2019 when Leah and Will graduated.
Of course, we are very proud of Josh. He has worked so hard to arrive at this moment. There was a time when he was younger that we withdrew him from school and worked with him at home because he really struggled with the overwhelming social environment of the classroom and the sensory overload that caused him to either withdraw or flee.
When he was ready to try a classroom again, it was decided that Heartwood School in Mason was the best option. The services and staff available to ASD students were far superior to the other schools he had attended.
For fifteen years, Heartwood was Josh’s home away from home. There are so many stories to tell from his time at Heartwood, and we were blessed with so many wonderful teachers and support staff— some we’re still great friends with.
Josh’s life was enriched from his time at Heartwood, as was ours.
Yesterday, he graduated. In attendance at the ceremony were some of the truly amazing people who helped our little boy become a man.
https://youtu.be/GhN6pePefBY?si=2-xKfkJbiBrLkJOe
Congrats to the two grads, Josh and Eric. Our deepest sympathies to the family of Jordan Malusek, a Heartwood Tiger who would have graduated yesterday as well, but passed away unexpectedly this winter. The ceremony included a very touching tribute to Jordan from Eric Lynch, one of Josh’s former teachers.
https://youtu.be/gu9p3Ftu_DA?si=PfOQJLiC6lD7h7Un-Grad Ceremony Part 1
https://youtu.be/kqG9-2DC5MY?si=AgvbbvxKbvakvRNV-Grad Ceremony Part 2
https://youtu.be/O1rxcAjpCII?si=0Dh1sMPYuKN9IGEq-Grad Ceremony Part 3 (Great job, Ashley! We appreciate you so much)
https://youtu.be/Zn7FAM1dJas?si=1gMXbjwqnJVAUoM9-Grad Ceremony Part 4
As far as Josh’s future, that’s unclear. Our goal is to keep him active and happy as best that we can. One thing we can promise is that he will be loved!
Have a great weekend and keep a smile in your heart! 🍀
BIG Announcement!
You guys!! You’re not going to believe this, but we started a YouTube channel.
Please watch our first video (surprise! It’s about chickens.)😂
https://youtu.be/Xf_Kdmub_i0?si=r4JT6vqBVcgyKO0i
Like and subscribe! Of course we will have chicken content, but we also plan to do some videos with Josh, and some gardening and sourdough tips. I’m even planning to do some live videos to answer questions, once I get my courage up.😬
What other things would you like to see us talk about on our channel? We would love suggestions!
Thanks to all of you for your support. It means a lot.💞
-Sarah🍀
Sacrifice
Many of you may already know this, but I am a diehard fan of the Detroit Lions. If you follow pro football at all, you know that the Lions are now one of the hottest teams in the NFL and are in the conversation to finally win a Super Bowl.
Today, their center Frank Ragnow announced that he is retiring after 7 outstanding seasons in the league, all of them with the Lions.
https://www.instagram.com/p/DKZ4Tukttds/?igsh=MWJ2MGhob3p5aTFzNg==
This quote from Frank’s Instagram post really hits me hard:
“I've tried to convince myself that I'm feeling good but I'm not and it's time to prioritize my health and my families future. I have given this team everything I have and I thought I had more to give, but the reality is I simply don't. I have to listen to my body and this has been one of the hardest decisions of my life.”
I can only imagine how this young man struggled with the decision, especially considering the team could realistically be playing for the Lombardi Trophy next February.
Could Frank have gutted it out and played through the pain another year? That question will remain unanswered. I will say this, I don’t know if I’ve ever seen a tougher dude that wasn’t an MMA fighter or a Navy Seal. For him to hang up the cleats, you know he’s in pain.
If you don’t know Frank’s personal story, his father Jon passed away unexpectedly when Frank was still playing college ball at Arkansas.
A couple years back, Sarah and I joined David Haupt from the Michigan DNR to shoot a short feature about a fundraising event for Frank’s foundation named for his beloved father, “Rags Remembered.” The segment was featured in an episode of the TV show we produce for Outdoor Channel called “Wardens.”
https://youtu.be/HZHhvNcAXEg?feature=shared
We got to chat for a few minutes with Frank and his mom, Marty. They were both very gracious when Sarah started sobbing as she heard about the loss of Frank’s dad. Marty gave Sarah a hug that only moms can give. After meeting them and seeing the mission of their foundation to help kids deal with grief and loss, we talked the whole way home about what special people they are.
Sarah, Frank and Tom-May 2023
Frank is a dad himself now, and his decision to retire is about family and being healthy enough to enjoy life. While it hurts to lose him as a player, I respect him for making the choice he needed to make. Nothing in this life is guaranteed and I’m sure Frank understands that better than most.
The question was raised today if Frank will one day be inducted into the Pro Football Hall of Fame in Canton, OH. I’m not a HOF voter, but I personally think his career merits a gold jacket, even if it was shorter than others who have been selected. I am admittedly biased, however.
I can tell you this, Frank Ragnow is a Hall Of Fame human in my book.
Thanks for the sacrifices you made to bring joy to the hearts of us Lions fans. Best wishes in your next chapter, #77!
-Tom
Autism Doesn’t Take a Break
Today is a special day. 29 years ago, Tom and I said “I do.” I woke up slowly this morning, expecting to ease into the day. I was grateful Tom got up with Josh and the dogs, and let the chickens out.
I got out of bed and was brought back to reality. First thing I did is clean up a poop mess in the bathroom.😩
I prepared my sourdough last night to make english muffins this morning. The 3” biscuit cutter that just arrived yesterday had disappeared. One of the “fun” things we deal with regularly is trying to find things Josh put away where HE thinks they should go. Tom and I both searched for over an hour before I finally found it inside a bag in my office. (Like, how does that even make sense?!)
Somehow it makes sense to him, I guess.
Josh’s anxiety and ocd behaviors are through the roof the past few days, and it makes me nervous for when this school year is over. We have some ideas of things to help him stay busy, and ways for him to make extra money to help pay for some programs we’re looking into.
Josh has less than a month left of school, before he ages out. The idea of “life without the routine of school” is terrifying, I’m not gonna sugarcoat it. Today may have had each of us feeling frustrated at one point or another, but we also felt a lot of love. Even though this day has significance for Tom and I, autism doesn’t take a break so we can’t either.♥️
🥲 Happy Tears
Our very last Parent Teacher conference went really well! Josh’s teacher is so fantastic, and she did a great job staying positive and upbeat, even though I was a wreck inside. There was only one short moment where I was grateful to have thought ahead, and glad I wore waterproof mascara.
We’ve had some wonderful teachers and support staff over the years, and the ladies giving Josh his send-off are top of the line. I feel so blessed to have these ladies for Josh’s very last year of school!
They hatched and let go like 20 butterflies! They do gardening and cooking projects, and take long walks in the woods. They stand and say the Pledge of Allegiance EVERY DAY!🇺🇸♥️
We’re very excited about some of the things they have planned for the rest of the school year. And while we’re still working on the plan for when there’s no more school, we know the next few months will be packed with goodness.🥳
The Little Things
The boys and I at Wolf Creek have been working on a few projects featuring some families that are going through very serious challenges. Stuff that is hard to see, to hear about and is heartbreaking.
It’s difficult to witness what these families are going through, but it’s important work helping them tell their stories. On a personal level, it’s a very strong reminder for me to appreciate how blessed we truly are despite our own challenges.
I was thinking about this as I watched Josh eat his supper tonight. While he can use utensils to eat, it took many years and a lot of hard work for him to be able to do so. It is still a challenge for him sometimes. When he’s having a rough day he often chooses to use his hands, but not tonight!
As they say, it’s the little things in life that matter most.
-T
Never Lose Your Sense Of Wonder
Just a quick post to send you into the weekend with a smile.
Josh’s school had a special event today called “Bubbles R Fun.” His teacher, Ashley, shared some photos with us.
Josh has loved bubbles from a very young age. Some may see this as a failure to grow out of “childish” fascinations for a nearly 26 year old man, but I see it differently. I imagine he sees a million little details in those soap water shapes, and how they grow and move and reflect the light.
Never lose your sense of wonder, buddy!
GO LIONS
-Tom
Doughnuts and Swim Days
Editor’s Note: We have had a lot of people reach out to us wondering if Leah and Will were safe from the LA wildfires. Yes! They are safe and sound. Our thoughts and prayers go out to all the people who have been impacted by the devastating fires. We asked Leah if she would write a blog post about our family vacation last August as she has a unique perspective being Josh’s sister. Here is what she wrote. -Tom
When Will and I first moved to LA, I struggled to find good work (and to be honest the struggle is still very much ongoing). The first place I found was at Sidecar Doughnuts in Culver City. Sidecar, in spite of all the headaches it gave me, was my saving grace at a time when I knew nobody and felt that I had no place I belonged. Even after I had ended my time there, I still wanted to bring my parents and brother to grab some good ass doughnuts and walk down memory lane.
The thing about Culver City, and Sidecar specifically, is that it is definitely boujee-rich-person-shit. Typically, they don’t put public restrooms in boujee-rich-people-buildings, which, if you know our family, is a significant stressor. Josh will ask to use the bathroom, whether he actually has to go or not, usually right upon arrival. I would be lying if I said it wasn’t a bit awkward seeing ex-coworkers while my brother is frantically trying to push his way to the back employee bathroom. Luckily, a business next door had the Porcelain Hookup and Josh happily obliged (with bribery of doughnut).
Minor fiasco aside, Josh seemed to love people-watching and enjoying a nice family breakfast at the cafe. <3
Josh waiting for his doughnuts after finding a restroom.
Josh loved the Sidecar doughnuts!
The other place I wanted to share with my family was Redondo Beach. This beach isn’t too far from our apartment, so we could bail at any time if Josh wasn’t into it. It also has a lovely park that we enjoyed a family picnic in! The beach was way busier than I anticipated for a weekday, and I think we were all a little on edge, but we stuck with it and made way for the water after we ate! Josh seemed amazed by the ocean, but wouldn’t go in further than knee-height. This was another huge surprise for us, because Josh has a history of going into bodies of water with no inhibitions, and we have many memories of him going too far out. Needless to say we were terrified he may want to go too far into the ocean, but he surprised us all and was entirely content just watching the waves roll in. :)
Redondo Beach p2
Swinging At The Park
Will and Josh navigating the steep hills at the park
We always try to *prepare for the worst* when doing family outings, but this trip continued to uproot our anxieties. We tried to balance out tourist-y activities with relaxing in the apartment, so as to not put too much stress on Josh. At this point, we’ve subjected him to a whole lot of new stimuli, and wanted to give him some sense of normalcy with stuff he enjoys at home. He picked out some new puzzles, and spent most of his downtime puzzling away. Our complex also has a pool, and we were lucky enough to have it all to ourselves a couple of times! Even when we weren’t the only family there, Josh made some new friends and helped get their diving toys out of the pool (also throwing the toys as far away from them as possible, but hey, it was a fun game lol). Josh loved warming up in the hot tub before going back inside to eat, and I’m not sure if a better feeling exists either.
Being pleasantly surprised was for sure the theme of this visit.
Josh doing his new puzzles at the apartment.
Josh and I took Duncan for a walk.
Dad and Josh headed to the pool.
Josh wanted to swim at least once every day!
Merry Christmas!
Josh’s school had their annual Holiday Idol this afternoon. It’s always a blast! Josh was a little anxious this year, but he stayed on stage throughout the entire song with his class.
Bittersweet day for Mom and Dad as this will be his last one.
Learning to Fly
Josh’s Summer Vacation Blog Post Part 2
Going anywhere away from home takes as much planning and preparation as it did when the kids were babies, I swear! Remember packing the diaper bag with multiple sets of clothes, toys, food (or bottles), snacks, etc. because you needed to be prepared for anything? Yep… it’s still like that for us.
When we were trying to decide between a direct flight from Detroit to LA or two shorter flights with a layover, the greatest consideration had to do with toileting and all the things that could possibly go awry. We opted to fly out of Grand Rapids with a layover at Chicago Midway (both smaller airports,) and we were excited to fly Southwest Airlines. Tom flies Southwest often for work and he was confident we would have a positive experience.
Josh was missing his routine bus ride, being on summer break from school, so we parked in the economy lot so Josh could ride on the shuttle bus. He loved it! We were the only ones on there, and he was grinning ear to ear.
Riding on the shuttle bus
We brought Josh’s wheelchair for this trip. He has full mobility, but with his history of eloping, and his history of just sitting down if he wants to stop and people watch, it was best to push him in his chair. He enjoys that anyway! To check in, some SW employees sent us to a “special” line so we didn’t have to wait in the long line with Josh, which ended up taking way longer.😂 Then the lady who checked us in seemed like she hates her job, and we hoped that would be the only negative experience with this trip. Going through TSA in Grand Rapids was almost a fun experience. They had Josh walk through a metal detector to me, and checked his chair out. The agents were very accommodating and caring, which was a real blessing since we were concerned that Josh may not follow their instructions. It was a breeze!
We made it through check-in!😅
There's our plane!
Josh did so great at the airport, and thankfully we were pre-boarded and were the first ones on the plane! He was a little anxious once we taxied down the runway and the plane took off.
Take Off!
https://youtube.com/shorts/PKY0b3G-YRQ?si=WX5Xtp27RGc8Fjtd
Josh stared out the window during the fairly short flight to Chicago. There was some rough weather and the landing was pretty wild!
Landing in Chicago
https://youtube.com/shorts/r33LHWRhW6o?si=soTG300d9nbSYrlb
We packed lunches and snacks and Josh was so happy sitting in his chair and people watching. Our layover was a couple hours long and he did get a little wiggy near the end. We think he was confused that we weren’t with Leah and Will after the plane landed. Tom wheeled him around the terminal and that helped calm Josh a bit.
Layover in Chicago
https://youtube.com/shorts/be5NO3a_sjc?si=WXOF3gt5EbcY1E7T
Once we were on the plane again, Josh enjoyed watching out the window for the entire flight to LA. He didn’t really want snacks, he wasn’t interested in any of his favorite movies we downloaded on his iPad. He just happily watched the clouds.
All of the flight attendants on both planes were fantastic, and very understanding. For all of our preparation and worry about possible toileting issues on our trip, Josh did great! Not one single accident.💖
Landing in LAX was so much smoother than our first landing!
https://youtube.com/shorts/hfjk4tXIssc?si=To65vUNSCRoYobDO
We’re Here!
Part 3 “Donuts and Swim Days” (Coming soon!)
Facing Fear
Josh’s Summer Vacation Blog Post Part 1
For special needs families like ours, there are many harsh realities that you learn to accept.
Traveling to new places together has always been one that we have struggled with. We have basically just avoided trying to do it. Long distance trips with Josh have been a mixture of tears and meltdowns with a few smiles sprinkled in.
Overall, Josh has been in a pretty good place at age 25. When Leah and Will moved to LA in June of 2023, we made a few lighthearted jokes about bringing Josh to visit them someday.
Our biggest fear while in public, aside from toileting issues, is Josh’s desire to elope. The thought of him running away from us at a crowded airport or across a busy road is panic-inducing. Plus, the things he craves most are his expected routines and daily structure.
The last time Josh flew on an airplane was 2003, when we took him and Leah to Alaska to visit Grandpa and Grandma Rushing and their family. While memories fade over twenty years, the one that sticks out the most from that trip is when Josh took off. You might be asking “how far could a four year old get?” When we finally found him, he was in the neighbor’s yard sitting on the roof of an old car. He had gone through the woods, crossed an electric fence (twice) and a pasture where a very large horse stood watching the commotion. While this maybe wasn’t even the scariest time that he eloped, it is definitely near the top of the list of things you never want to experience again.
The Nichols Family in Alaska, 2003
Over the last few years, Josh has been looking at family photos on his iPad often, especially photos of Leah and Will. Like a lot of people with autism, what he doesn’t say with words is often clearly expressed in other ways. We know how much he misses them.
We do too, buddy.
Josh scrolling family photos on his iPad
Often Josh does things that surprise us and make us beam with pride. With that in mind, we decided to face our fears and booked flights from Michigan to LA! For about two months we recited a little social story about flying on an airplane to California to see Leah and Will. Every day in the shower. Every time we were on the phone with Leah. If you heard him in person, you know how stinkin’ cute it was to hear him say it along with us.
Coming next “Learning to Fly”
It’s an Adventure Each Year!
Josh has attended Heartwood School in Mason since February of 2011 (I think?) We have often referred to Heartwood as “The Happiest Place on Earth.” We’re so fortunate to have had fantastic teachers and staff pretty much this whole time.
One of my favorite annual events is “Heartwood Idol,” their Christmas program. Each class gets on stage and sings along, plays instruments or otherwise performs per their ability. Man, those early years were rough for us. Sometimes Josh would run from the stage. Some years staff would sit in a chair with Josh in their lap. One year Josh laid down on the stage by the Christmas tree for their whole performance, and didn’t want to move when they were done.
We saw all of these behaviors and challenges this year, but not from Josh. The last couple of years Josh has really grown up. This year he still wasn’t thrilled with having the bells on him, but he’s totally singing Jingle Bells.🤗
I want to encourage the parents of the kids who had a hard time this year. It likely won’t always be like this! I never imagined we’d be where we are now, but look at Josh go!😍
Keepin’ it Real
A lot of the Autism pages I follow have talked lately about their worries for the future. Whenever I read one, it’s like being punched in the stomach. Each of these people I don’t personally know are sharing thoughts and fears that I have had myself. I think that’s the common thread for Special Needs Parents:
What’s going to happen to our children when we aren’t here?
I’ve sort of joked over the years that “I just can’t die. Ever.” And then I had a heart attack, and a new terrifying reality set in.
I feel like I should clear some things up, as we’ve gotten questions about “the cause” of my heart attack.
*First, I did not take the jab.
*Second, I am not grossly obese or majorly out of shape. You may have seen some of my exercising journey over the last couple of years.
The biggest contributor, I believe, is the extra stress of being a Special Needs Mom. The fact that I’ve been in fight or flight for close to 24 years. The fact that I haven’t slept well for most of that time too, and if Josh gets up in the night I’m up with him. Still.
Many people say Special Needs Parents have PTSD, but I disagree. There’s nothing “post” about it- we never get to the “post” point, because we’re continuously going through it. I recently heard the term CTSD for Chronic Traumatic Stress Disorder. That sounds more accurate. It’s a continuous cycle of anxiety, where even the happy days have you secretly wondering when the next rough day (or night) will happen. I’m not trying to feel sorry for myself, simply trying to paint an accurate picture.
So now I’m making more life changes. There are other things that could be considered “life stealers” that I’ve cut out, but these are subjects for another blog post sometime.🍀
Our First Super Special Guest Post!!🤩
Edited to add: The post says “Written By Sarah,” but it’s actually written by my friend Nancy Voss.🍀
My name is Nancy. I first met Sarah several years ago at a gym and swim at Heartwood School. Our husbands swam with our kids while we talked.
Fast forward a few years, I was a paraprofessional in the room Josh was in. That is when I found my four leaf clover; a forever friend. My husband was in Afghanistan that year and it was all a blur, except Sarah. It's hard to believe it's been 10 years!
Our friendship has taught me countless things, mainly that I need Young Living and chickens in my life, and that superheroes do exist. I know Sarah's life can be hectic and stressful, but she always listens to me about my troubles and somehow makes me laugh. Having Sarah, Tom, and Josh in my life has made it better. I look forward to our friendship in the next 10+ years, and am thankful I found a true four leaf clover.
Sarah and Nancy learning so much more about essential oils at a Young Living event.
I guess this is 50, too.
We had some excitement here on Friday, November 4th… we got a new roof! What I didn’t count on was the chain of events this activity would set off.
I have never experienced noise like I felt when the crew was scraping shingles off the roof. My heart was pounding so hard, I figured I was having a panic attack and was using essential oils to help calm myself down. I even went to spend some time with the ladies to get away from the noise, but my heart kept pounding.
Saturday rolls around and my heart is still pounding. If I was standing still it was mostly fine, but even walking from one room to another made it start pounding again. Then I started feeling achy in the insides of my biceps, and I was thinking “blood pressure” so I used oils that I would normally use in that situation. Heart kept pounding.
4am Sunday, I wake up with what I think is massive heartburn. Again I turn to my oils and do what I would do whenever I have any kind of tummy troubles. Nothing happened- my “heartburn” was still there. Eventually we called my mom to come and stay with Josh so Tom could take me to the hospital. We still really had no idea what was going on, just that it “wasn’t right.”
I started feeling like I was having difficulty breathing. That’s when I actually got scared, and said we should probably call an ambulance. I felt like I needed care NOW. Mom made it here just before the ambulance. They got me inside the rig, and my bp was 191/110.
On the way to the hospital, the EMT offered me pain meds. Now, you may not know this but I don’t take drugs. I don’t even take Tylenol, so the idea of pain meds didn’t appeal to me at first. The EMT said, “What if I just gave you a half dose?” I agreed at that point, but then she told me it was Fentanyl and I again declined that. (Too many news stories about that stuff!) The pain I was feeling overcame my objections to drugs and I let her give it to me. As soon as it hit my system I said, “I can’t believe people actually want to feel like this on purpose!” I really didn’t like how it made me feel.
Interestingly enough, I assumed coming to the hospital via ambulance would get me treated right away. Not at all the case. I was there for two hours (at least) before they got me into a room in the emergency room. Tom was in the waiting room for those two hours, unable to be with me until I had a room. I spent all day and night there, until they took me up to the cath lab before 8am.
They drew so much blood. At first it was every two hours, then every four hours. Eventually it was every six hours. My heart enzyme was over 6,000 when I got there, and it doubled overnight. (I think it’s supposed to be less than 18.) They did five ekgs, an echocardiogram, a cat scan.
They told us ahead of time that I’d be in the cath lab first thing in the morning, but neither of us really understood what that meant. By the time Tom got back to the hospital Monday morning, I already had a stent put in. We were told later that I had one artery that was 100% occluded, and another between 70-80% occluded (blocked.) A “mild heart attack.” I have an appointment in December for additional stent(s) in that other artery.
I had absolutely amazing nurses the entire time I was in the hospital. My ER nurse is my first favorite, but my nurse while I was in the cath lab was so perfectly suited for his job. I could say something positive about each one of them (and nothing negative) but those two were my favorites.
I need to give a huge shout-out to my amazing husband. He was texting family the entire time, every time we got an update he would let people know. I’m amazed at his calm, and how he was able to keep it together.
My biggest worry, when we didn’t know when they were going to let me out, was that I wasn’t going to be able to vote. When Tom went to vote early Tuesday morning on the way back to the hospital, he asked them about an absentee ballot for me. He was going to have to bring me the application which had to be filled out in my own writing, get that back to them by 4pm, then bring me the absentee ballot and get that back to them by 8pm- which he was totally willing to do. I have never NOT voted in person, and I was a little freaked out. But still praising God that I got out in time to vote in person!
The day before my symptoms started, I had a conversation with my dad about mortality. I told him “I think about it myself, sometimes. Like: I know where I’m going, and I know how wonderful it will be, and I’m so grateful I have the Lord. But also, I think about what I’m leaving behind, and feel like there’s still so much to do.” The same day I had actually asked the ladies at the township office about voting in person on an absentee ballot, and decided not to do it. So bizarre.
So now I am on medication. Again, I don’t take drugs of any sort so for me to go to the hospital, let them pump me full of drugs for 2.5 days, and leave there with 5 prescription meds is extremely hard on me emotionally. I’m frustrated and hurt because I feel like my body betrayed me, and I’m angry about the medicines. On the other side of that, I’m grateful for life.🍀
Halloween and Autism
I have always loved Halloween. When Josh and Leah were little, I loved finding just the right costume for each of them. At first we didn’t really try to trick-or-treat with them, we would just get dressed up and head over to Aunt Nan & Uncle Joe’s. They always made up a bag specially for them, we would visit for a bit and go home.
When Leah became interested in trick-or-treating, things got a little tricky. We tried to take them both once, but Josh kept trying to run into each house.😬 Tom was often traveling over Halloween, so one year Leah went with her friend from preschool while I hung out at home with Josh.
Josh has some sensory challenges, and it’s hard for him to process certain things. Eventually we could only put him in costumes that were like clothes he would normally wear. Masks have never been an option. He likes to people watch, but all the people with the lights and loud noises can be overwhelming, which results in a meltdown.
Nan and Joe made up bags for all their nieces and nephews, so every year we got the kids dressed up and went there first. I’m not sure the exact chain of events, but eventually it came to be that Josh would stay at Nan & Joe’s while I took Leah around town. We did it that way for years, until Leah eventually chose to trick-or-treat with her friends.
In those early years, I tried not to feel like I was missing out. I wanted to be grateful for what I had, but I also wanted my kids to be able to do all the things their peers were doing. I wanted to be the mom who shared the whole experience with my kids, and talked excitedly about different houses and their decorations afterward. And I really did feel like we were all missing out on so much.
We didn’t try to take Josh around again until 2013. Josh was 14, Leah was 12. We had gotten a wheelchair from a family member who no longer had use for it, and Josh liked to ride in it. Remember, he was a runner (or wanderer) and the wheelchair was a lifesaver for our family. While he isn’t physically disabled, having him in the wheelchair gave us a little peace of mind, a moment to breathe without fear of him eloping. We found these neat cards online, printed and laminated them. We handed them to each person we trick or treated, and it was well-received, even though Josh was “past the appropriate age” to beg for candy. We did that two years, but then Josh was sort of over it, and again just wanted to hang out at Nan & Joe’s.
I’m thankful Josh’s school still does a Halloween celebration, and they trick-or-treat in a parade. I want him to be able to enjoy it as long as he still does. I guess my take-away in all this is, if you have a child with Autism or any other sensory difficulties, find what works for you. Don’t beat yourself up over “what might have been” or “what should be,” and do what you can that makes each of you happy.
Leah and I wearing matching Halloween shirts (one of many🎃)
The amazing cards we used so Josh could trick-or-treat
One year I made all three of us penguin costumes. This year, (2017?) Josh fit into mine🐧
The sweetest chicken I ever saw! This was last year at school🐔
We’re in This Together
Tom is an amazingly supportive husband. We celebrated our 26th wedding anniversary in June, and we’re much more of a team than ever. I think our personalities have always complimented each other, but we’re more in sync these last few years.
When I first told him I wanted to get essential oils to try with Josh, he sort of just went along with it. There wasn’t any kind of argument about it, he knows I would only ever make decisions for Josh if I thought it was best for him. When the oils showed up, I spent time researching each oil, how to use it, what it’s “good for.”
My favorite “Tom and oils” story goes like this: Tom had gone to eat with his coworkers, and when we were all home he had his hand on his belly and said, “Babe, my belly is killing me!” I said, “Ooh! I have an oil for that!” I literally had no idea what I was doing, but I shook a few drops from the bottle and rubbed it all over his belly. I had just been researching a blend called DiGize, and from what I read it was good for digestive issues, so what I did made sense to me. He came back just minutes later and said “I don’t know what kind of magic you just played on me…” 😂 So DiGize was Tom’s “gateway oil.”
He picked on me for months about the witch’s potions I was making, and he had all kinds of fun nicknames for my oils. And then we had some scary stuff happen with anxiety and medications from the doc that was uncomfortable, so I started making some roller bottles with essential oils for him to apply to his skin whenever he was starting to feel anxious. He didn’t like the meds so he used the oils. (Besides, they smell better!)
I honestly can say there was a major transformation. We went from Tom picking on me about witch’s brew, to where we are now. Tom has his own oils bag that he won’t leave home without. Ever.
There is a conference I go to each Spring and Fall called Exceptional Expectations. It’s two days chock-full of so much education and information about ways to use different oils, the many different supplements Young Living offers, major amounts of self improvement and self development, business tips for those pursuing YL that way, and for me- usually lots of emotion. It’s a fantastic event, and I’m glad I got to experience it with my oil-loving husband in the Spring.
It was at this conference that we first talked about starting a blog. We talk often about our dreams, but this was a sort of tangible way to get out some of the experiences we’ve had. To share more of our lives with people who want to know. To hopefully let other Autism moms and dads know that they probably aren’t alone in whatever they’re experiencing with their kid. To let other die-hard Lions fans know they aren’t alone, either. (Post eventually coming about that.😉)
At this conference, we really reconnected. Life happens and we all get into routines, but I feel like the Spring conference reminded us about doing things with purpose. Doing things ON purpose, and simply making a point to be present with each other.
We don’t have coverage for Josh this time, so I’m going without Tom and with another Special Needs momma. Tom will be holding down the fort here while I spend time learning and just being poured into- so I can come home and share it all with everyone else.
We’re in this together, and we both contribute to make it all work.🍀
One of my favorite pics ever- both with a couple drops of essential oil in our hands.💧
This is 50💪
The High Ropes Course at Center Lake Bible Camp is my JAM! I don’t know if I’m good at it, or if there’s such a thing as being good at it, but I know I love it. I love the challenge, I love how the only choice I have is to push myself to finish each element I start.
I’ve been going to this Women’s Retreat at Center Lake Bible Camp for 20+ years. Josh was really young the first time I tried the High Ropes Course. We really didn’t know what the severity of his Autism would be, and way back then I imagined this would be something we could do together, since he liked to climb so much. After my first time, my imaginings of doing this with Josh flew out the window, but I was HOOKED.
My favorite element is the cargo net. It hurts your hands, and it’s the hardest. I think the reason I love it this much is because it’s so challenging. The feeling of accomplishment is so great when I make it across- way more than any of the other elements.
So this is me, at 50, continuing to challenge myself with the High Ropes Course. I don’t want to think about a day when I will no longer be able to handle it. For now I’ll just bask in the glow of knowing I can still do it, and look forward to the challenge next year!
Instincts
How do you know what’s right? Do you listen to your gut feelings?
When Josh was 18, his OCD behaviors had gotten out of control. Debilitating. It would take us 15-20 minutes to be able to leave the house, because he had to do “all the things” that had to be done before he could leave, sometimes twice. He had to go from one end of the house to the other, turning magazines upside down, turning on all the lights, flipping anything and everything backwards or upside down.
We had an amazing family doctor at the time. He was very respectful of my need to do things as naturally as we could, and never pressured us. When we finally talked to him about Josh’s behaviors, his office went to work looking for a psychiatrist who had experience with Autism, but also accepted Josh’s insurance.
Recalling our first visit with the psychiatrist they found still makes my blood boil. Tom and I described what was going on with Josh, and how bad things had gotten. I explained that I had tried his whole life to do things naturally, that I had never wanted him to be on medicine. He looked at me and said, “I am the doctor, you’re just the mom.”
Anyone who knows me can’t believe I didn’t tell him to eff right off, and get up and walk out. Or worse. But I tell you, the desperation we were feeling to help Josh, even to help alleviate some of our stress, won over my disbelief at this guy’s unthinkable words.
He proceeded to tell us how he “treats these kinds of things all the time,” and there’s “a protocol he follows with all of them.” (Again, I’m beyond pissed at this, too. How are you not going to see our son as an individual, instead of just another person with Autism?) We left there with four prescriptions that day, and my heart was broken but I was hopeful that this would help.
When we went back for the next visit and explained all the things we were seeing, he added another drug. (At one point this jerk had Josh on 6 different drugs.)
Josh started to gain weight- like a LOT of weight. Each visit didn’t make things better, made me more frustrated. Our beautiful, once happy boy was now living sloth-like, he didn’t want to go outside, barely did anything but lay on the couch, watch videos and eat. He also started drinking a ton of water, he would stand at the sink and fill up glass after glass, multiple times a day. When I brought this up to the psychiatrist, he brushed it off. He actually suggested we put pullups on Josh so he wouldn’t have accidents from drinking so much water. Actually, any time I brought up a concern, or asked him about a natural thing I had heard or read about, he dismissed it. I once asked him about gaba, and his response was, “It doesn’t matter if it’s a natural thing or made in a lab. If you eat something poison growing in the woods, it will still kill you.”
At another visit, I asked the psychiatrist about CBD, and the positive things we’ve been learning about that. He laughed it off, and said there’s nothing concrete they’ve found that says it could help someone like Josh.
I should also say that Josh did not like this guy at all. It’s possible he was picking up on my feelings, but he would start to get super agitated when we were almost to the office, and while we were there he would hand me my purse and say “All DONE!” multiple times during each visit.
During this time, Josh started to get some sort of boil on his neck for the first time. Our family doc lanced it once, but it came back so he referred us to a surgeon. Josh would have surgery on his neck for these boils twice, and they did a blood draw each time. After the second surgery, our family doc let us know Josh’s A1C was 12. Normal A1C is below 5.7, so this was scary. He told us Josh was a candidate for insulin shots right now. I asked him to let me try and get it under control with diet, and he agreed- giving me a timeline of 6 months, with a blood draw after three months. He also referred us to a diabetic nutritionist at the hospital. During that visit, we found that one of the medicines the psychiatrist has Josh on actually raises your blood sugar. The nutritionist agreed to help us find another psychiatrist.
Before I heard back from the nutritionist, we had another visit scheduled with the original psych. At this visit, he asked me if I had ever looked into CBD. WHAT?!?! I actually said, “Are you freaking kidding me??” I was so furious as I had asked him about that just two visits ago. We left and never went back. I can’t believe we continued to see this guy for almost a whole year!
The nutritionist found another psychiatrist for us to check out, and I made our first appointment. Our experience with this doc was like night and day from the previous psych. He was super laid back, and Josh was immediately comfortable with him. We brought all of Josh’s meds, and he asked questions like, “When Josh has violent outbursts, how bad does it get?” What? Josh has never been violent in his life. That’s what one of the meds was for. “How often does Josh have seizures? Tell me about them.” Josh has never had a seizure! Apparently that’s what another med was for. It turns out, each med was supposed to help with one thing, but caused another, so the original psych just kept adding meds. We left that visit off 4 meds, and weaning off the 5th. The new psych ended up giving Josh one med, with another sort of “emergency use” sleep med.
After about a year on that single medicine, we discussed with the psychiatrist about getting Josh off of it. It was never my intention to use medicine, and Josh was in a really good place. We did stop using that medicine over a year ago now. Recently I considered calling the psych back and exploring options, when things were really rough for a few months. But then Josh seemed to come out of the “crazy,” and he’s doing great again.
Quickly back to the A1C scare, we did drastically change all of our diets, plus he got off the medication that raised his blood sugar, and the blood draw check showed a normal range.
The bottom line is, I don’t know the answers. I know we need to do what’s right for our own family, and I will never again ignore my instincts.🍀
I love that I’ve been getting pics with actual smiles lately! For so long it seemed like I could only catch him mid-CHEESE!