Navigating Loss

You've probably noticed that we haven't posted content in quite some time. It has taken me a long time to put together my thoughts for this letter, which is one of the longest I've ever written. The last post we wrote was a reflection on 'Special Person's Day' at Hudson's school last November, where his Grandma Sandy (Kayla's Mom) and I were part of many special individuals who were celebrated. One week later, our world was flipped upside down. And it wouldn't be the first time that everything would change.

One day after returning to work from a long Thanksgiving holiday, I was laid off as part of a reduction in business that impacted several others in the company.

I was given a meager severance package that would only sustain us through the end of the month. We were still recovering financially from another year of expensive projects on the house, so our parachute was small. Kayla and I immediately began to scale back on holiday shopping, focusing just on the boys, while also canceling any thoughts about a vacation in 2025. I had been with the company for nearly 7 years, and my income was roughly 60% of what we brought in each year.

Kayla and I agreed that we needed to hold off on telling the boys about my job loss until after the holidays. Hudson’s birthday has always been a triggering event that he obsesses over each year, and we didn’t want anything to tarnish his special day. We put on a brave front for the boys, cringing every time one of them pointed out something new that they wanted, or places that they wanted to go during winter break. I had worked remote since COVID, so the boys were used to my always being home. My working remote had been a blessing for us, as it allowed me to never miss a school meeting or function. I would get the boys off the bus every afternoon and had started taking Hudson to school in the morning. We were anxious about my finding another project management position in a field that suddenly had a tremendous amount of competition, particularly for remote work. Kayla was able to find comfort in talking to her Mom, as she reassured her over and over that everything would be ok.

We told the boys about my lay off between Christmas and New Year's. I'll never forget how Hudson erupted into tears, his anxiety overtaking him...

"YOU'LL NEVER FIND ANOTHER JOB AND WE'RE GOING TO BE POOR FOREVER!!"

Days later, we were dealt another terrible blow - one that was far worse than my loss of income. Kayla's Mom had suddenly passed away.

Grandma Sandy had always been a constant in Hudson and Finn's lives. She was Hudson's 'person' in the family outside of the house, and he and Finn always loved seeing her. She made every sporting event and school performance that she could. Each time she visited them, she would always bring a pack of cookies, toys, or clothes that she thought they would like, no matter how much we pushed back. Whenever we needed an ultra rare date night or a break from the kids, Grandma Sandy was almost always the first person that we called. The boys would be full of energy when she watched them, no doubt running her completely ragged in the process. But if she was exhausted from watching them, she'd never let it show.

When I lost my job, we were optimistic that we could lean on Sandy for help with the boys as I scheduled interviews. With each remote work position rejection that I received, the thought of my having to transition to fully in-office or hybrid work became more of a concerning reality. Kayla and I would spend our nights trying to plan out how often we might need her Mom to be here after school, or to come over long enough for us to attend meetings for Hudson.

Losing Sandy meant that we lost much more than a source of respite. The loss created a large void in our family that will never fully heal. Kayla lost her Mom, and Hudson and Finn lost the Grandma that was always there for them. The Grandma who was one of the first to hold them after they were born, and would cheer them on in soccer or tee ball games, and would cry while watching performances that they were in. The Grandma that they would jump and cheer for joy when Kayla asked if they wanted to go her house.

In the hours and days after her passing, Hudson and Finn tried their best to process what it all meant. They comforted our tears and continue to give Kayla hugs whenever she thinks about her Mom to this day.

Hudson sat between Kayla and I at the funeral, more stoic and quiet than he had ever been. He doesn't like being anywhere but home, and usually fights and screams any time that we have to go somewhere that isn't a special place for him. Thankfully, there was very little resistance when it came to going to the funeral, and we planned for him to only be there for a short time. As eulogies were read and songs were song, we could see tears off and on rolling down his cheeks. I read the poem that he had given to Sandy on Special Person's Day, and I struggled through the words. In the weeks after the funeral, Hudson would talk about his Grandma Sandy or write about her in projects at school.

When you are living life on the spectrum, it takes a village to survive. But that village is often very small. Grandma Sandy was such a huge part of our village, and we don't know how we'll navigate life without her. There will never be another Special Person like Sandy, and we miss her dearly.

I started a new job early last month with an amazing company that supports remote work and has a family-first mentality. Days before her funeral, Kayla and I decided to gamble on my future and invested in a prestigious but also expensive Project Management certification program through Cornell University. I posted on Facebook that I had started this new journey with the hopes that it would land me a dream job upon completion - a job where I could still have the same availability to Hudson, Finn, and Kayla, without completely destroying Hudson's routines.

Grandma Sandy showed us that she could still perform miracles for our family after her passing. A friend of theirs saw my post while looking for updates on her passing online. This friend, Kera, works for Cornell and out of the goodness of her heart extended me a Friend's and Family discount that refunded nearly all of my course enrollment tuition back to me at a time when we desperately needed to save money.

Sandy told Kayla in December that everything would be OK, and she made sure that she held true to her word.

Special Persons Day

Let me tell you… Hudson has a skill for making you tear up without knowing he’s doing it.

Today was Special Person’s Day at school. It’s meant to be a celebration of special people in a student’s life. I was fortunate enough to make the Father’s Day Coffee event in past years and was excited for today. I was joined by Hudson’s Grandma Sandy.

The event took place in the high school cafeteria, and we were directed to pick a table when we walked in. The room was PACKED, with many guests standing along the wall. The back of the room contained tables of sweet treats and coffee that had been donated by the school PFO and a local coffee company.

Hudson came in to the cafeteria with his class, his eyes scanning the crowd trying to find us. His face lit up when he saw where we were sitting, and he immediately came running over. The look on his face when he finds me during an event is always one of my favorites.

He presented Grandma Sandy and I with two laminated poems. Looking at the length and penmanship, I could tell that this took him awhile to do. Writing is one of his challenges, and I was impressed at how hard he had worked on this.

We both teared up when we read the words he had written. And out of nowhere, Hudson grabbed both of our hands and gave us smiles as if to say “I don’t know why you’re crying, but it’s OK.”

Not long after, we joined the line of others to get our special treats. I could tell he was excited to show us how special we were to him. He offered to pick out our treats for us, and shockingly went behind the table to serve us alongside the volunteers who were running the event! No other student was serving their guests; Hudson chose to do this all on his own.

I am so grateful for these types of events at the school. We likely will never see him play in a school sporting event or participate in a competition. If this is all we get, it’s more than enough to melt my heart.

The Price of Advocacy

Being a parent is hard. Being a special needs parent is extremely hard.

This is a resounding fact you’ll read about in probably every blog post from us; but we say it often because it’s the truth.

Fighting for Hudson is probably one of the hardest things we’ve had to do… and up until last year, Matt and I thought we were advocating for Hudson, but really we had no idea how to actually be an advocate until push came to shove. And we’ve learned that sometimes being the advocate makes you “the bad guy” in the situation.

Matt has become the best advocate I could ever ask for for Hudson. He’s a deeply passionate person who wants nothing more than the best for his family and those he loves (the man bought me Taylor Swift tickets for Christmas last year, people! That’s love!). He has taken on this immense role almost completely on his own. He went through the grueling process of getting Hudson certified for OPWWD (that alone is a huge thing, IFYKYK), and has also reached out to the University of Rochester for help and training for us as parents. Not only that, but he does doctor appointments and handles all the school emails and calls. He also makes every single IEP meeting.

His working from home helps makes this possible but it also takes a huge chunk of time out of his days. Everything he has taken on could be an entire full time job in itself. Yet he still works his job and has time to help around the house and play with our boys.

I personally struggle with advocating. I’m a people pleaser and I work in the district where Hudson attends school, which often times makes for a very awkward situation as I have to separate my role from educator to parent.

However, being an advocate has come at a price for Matt. When you fight for your child it is not always done in a friendly format and it can paint you as a villain. Unfortunately, sometimes you have to get nasty to get things done. We have never wanted it to get to that point, but sadly it has at times and people have been hurt in the process.

What I wish everyone knew is how hard my husband works to be the advocate he is. He is not a bad person, but an incredibly passionate parent who wants nothing more than to see their child succeed. We have received so much more help in the last year. We now have parent training and an actual autism advocate working with us, and a pediatric psychologist. Before that, we had nothing other than us relying solely on the school for help. Matt’s passion to help his family is inspiring and although he may come off harsh, he has nothing but the best intentions for Hudson.

I am proud to be married to someone like Matt. Perceived bad guy or not, I could never make it through this autism journey without him.