Category: Fox Man’s Dad

A lot has happened in a short amount of time. Last week Jenni called Cornerstone Autism Center (one of MANY options we’ve been looking at for ABA Therapy in Indiana) to let them know we had decided we would like Desmond to stay in a traditional daycare setting with neurotypical peers for as long as possible. This meant finding a provider that had therapists go on site, rather than having Desmond attend a full day center.

The next day they called back. “Guess what?!” they said. “We fought the insurance and got Desmond approved for a full 35 hours a week!”

!!!

Crunch time. Now there was a decision to make. Should we keep Desmond in daycare with 20 hours of ABA therapy a week in a daycare environment, or should we try Cornerstone full time, giving him a full 7 hours a day of therapy?

Hardest. Decision. Ever.

In the end we decided to try Cornerstone. Desi started there yesterday. Today is his second day.

Honestly, I still have conflicted feelings about it. I loved that Desmond was around neurotypical peers while at daycare, but I also love the fact that he’s getting the individualized attention he needs now full time. Jenni and I saw SO MUCH improvement from a mere 20 hours of therapy a week out in Redmond. I am beyond hopeful that 35 hours a week will jumpstart his skills and lead him to a path to success. It’s also pretty nice not having that extra $1,000 of daycare costs every month. Whew! We also don’t have to tell insurance, “Yeah, we know you approved Desmond for 35 hours, but we’re going to go with this 20 hour option instead…”

Really, it all comes down to what is best for Desmond. While that is up for debate, Jenni and I try our best to make the right decisions. Cornerstone is new, and we’ll give it everything we have. If we see it’s not working out, we’ll pivot. All we can do is try. And hope. And try MORE.

I think the hardest aspect about it for me is the fact that this is the first time I’ve ever felt like Desi is truly different. That might seem silly, because there is nobody like Desi, but before this point (at least in my view) he’s lived the same life any other kid his age would live. Sure, he sees the world differently and has had some extra therapies thrown in, but there’s just something different about dropping him off at a specialized center instead of a typical daycare that makes me feel so… sad. Even if I know that it’s what is best. And even though I’m excited, and hopeful, there’s a little sadness there too.

I guess everything can’t be sunshine and giggles.

Being a parent is hard. I would say that being a parent of a child with ASD is harder, but honestly I don’t have anything to compare it to so I don’t really know. We’ll just keep at it. Never give up. Never surrender.

They say that hindsight is 20/20. It’s easy to know what you should have done after it’s already happened. This is one of the curses of life and time. When Jenni and I finally decided to move to the Pacific Northwest, it was after months of deliberation. Pro/Con lists were plentiful. In the end, we finally decided that the experiences and opportunities outweighed the negatives. So, we moved our little family across the country. Desi was 6 months old.

Fast forward to today. Desmond is nearing 2 years old! He has also been diagnosed with ASD for 6 months now. With retrospect, in HINDSIGHT, it is easy now to see this past year and a half has been one of the hardest we’ve ever experienced. No family here. No support. All of our best friends are back in Indiana.

I am beyond thankful that Desmond has the most amazing, intuitive mother. I am grateful for the incredible care his therapists have given him and am tearful at the progress he has made. It hurts my soul to think of leaving the teachers and administrators at Goddard, all of whom have been gracious, understanding and helpful as Desmond journeys the path through his world. If there’s one shining light about our whole move to the PNW, it’s that Desmond was diagnosed so early and has received the most amazing care.

However, Jenni and I both have been struggling. We’ve slowly realized that the life we live here simply isn’t sustainable. Again… No family here. No friends. No support. When Jenni gets sick, I’m left to do everything. When I get sick, she has to take up the slack. When we’re both sick… well, it isn’t pleasant (and it’s happened more than once).

We both keep coming back to something the doctor told us when Desmond was first diagnosed and we were going through all the therapy options. One of the most important things is to take care of each other, because if we’re not well then we’re not able to take care of Desmond to the best of our abilities. As it is, we’re stretched too thin. We spend all of our time at work, at therapy, or working with Desmond. I find time to run here and there, but I think Jenni only gets 15-20 minutes to herself at the end of the day before falling asleep exhausted. We need help. We can’t do this alone.

So, even though we love the culture, environment and opportunities of the PNW, we’ve decided to move home to Indiana. Packers are coming on October 9th and we’re loading up the moving truck on the 10th! Looking forward to an amazing road trip with my Dad as we transition back to life in Indiana, where we’ll be close to all our family and friends once more.

This whole experience has made me realize just how important family and friends truly are. You can have the most indescribable experiences, but they don’t mean much if you can’t share them with the people you love, and everyone we love is in Indiana. I am hopeful that once we move home we can find the sustainable lifestyle we need with the help of our family and friends. Jenni and I might finally get a real date night, too!

Looking forward to seeing all you Hoosiers in October!!!

Since Jenni and I have started sharing our journey navigating this new world of having Desmond diagnosed with ASD, we’ve received varying amounts of response and feedback. For the most part people are overwhelmingly supportive. Prayers and thanks and understanding and encouragement are all forthcoming and plentiful. As of yet nobody has chastised us for sharing so openly such a private, difficult experience. But sometimes people say things that have an underlying sense of… pity.

I don’t think it’s ever intentional, and maybe it is unavoidable, but for anyone out there reading these words, I don’t want you to feel pity for us. You see, to me Desmond is perfect. Yes, things can be more difficult at times, but If I could magically take away his ASD, I wouldn’t. That’s part of who he is. He sees the world through different eyes in a completely unique way. Taking away his ASD would be to take away his personality and a part of who he is, and there are so many wonderful things I love about our little Fox Man.

Here are a few of my (current) favorite Foxy things:

• Desmond loves cars. Whenever he sees one out on a walk he laughs and smiles and it melts my heart.
• Desmond loves to examine how things are built. He examines objects from every angle, figuring out how they work and how they’re put together. It’s so much fun watching him figure things out.
• Desmond loves music and singing. Whenever he’s upset all we have to do is start singing Little Bunny Foo Foo or some other song and he’ll calm down and pay attention to us. He hums all the time and I love it.
• When Desmond wants to go outside, he brings us his shoes. He’ll turn around and sit on our laps while we put them on. Then he’ll push us toward the door where he wants to go. He’s getting better and better at communicating what he wants.
• I always have Desmond open the garage door. He loves to push the button. My favorite thing is when he looks at me first with a big grin on his face before pushing the button.
• Whenever Desmond wants a cracker or pretzel or other snack, he’ll open the pantry door himself and bring us the box of what he wants. Then I’ll have him point to the box every time he wants another cracker. He used to never point, but now he does so all the time and each time he does my heart soars with victory and happiness.
• Desmond likes to go outside on the balcony. He thinks it’s hilarious to slam the door on us and keep us inside. I’ll put my forehead up to the glass and he’ll mimic me and we’ll have a staring contest through the glass door. It’s so much fun!
• All I have to do to make Desmond laugh is fake a sneeze. Hilarious!
• Every day when I pick Desmond up from daycare, we do what I call the “slalom” outside. I’ll run back and forth through a series of posts with him on my shoulders and he laughs the whole time. Always a great end to the school day.

I could go on and on about all the wonderful things I love about Desmond that make him special. In fact, I probably will in future posts because I don’t want to forget any of them as he grows up. My point is, I love Desmond just as he is and I wouldn’t change a thing about him. Yes, we’re doing therapies to help him grow and, in essence, change him to be more neurotypical, but that’s totally different. We all want our kids to grow and learn.

I am the proudest dad in the world and I will not take for granted a single moment of the amazing journey we’re on. It’s my honor and privilege to help Desi become everything that he can be and grow into an amazing little Fox. Every day he gets a little bit bigger, stronger, wiser and more courageous. So everyone out there reading about our journey, don’t be sorrowful. Don’t be sad or feel regret or disappointment for us. Desmond is exactly the person he was born to be and I can’t wait for you all to see him grow. He’s pretty amazing.

I’ll be honest with you. Things suck right now. I’m down. Jenni is down. Work is stressful and all of our energy is going toward trying to help Desmond the best that we can. Our family and main support are all back in Indiana, and to top it off there has been a recent family death that has hit us pretty hard. Yeah, life sucks right now.

I also realized something yesterday. We have officially lived in Redmond for one year. When a milestone like this happens, it’s easy to get lost in reflection. I begin asking myself, “Was this the right move? Why are we here? Shouldn’t we be closer to family during these trying times? Was it worth the time/expense/stress to uproot my entire family to move across the country?” All deep questions to ask when you’re feeling down.

Most people may not know this about me, but I am a deeply spiritual person. Not religious. Spiritual. This will come as a shock or surprise to most, because I almost never talk about my beliefs. They are my own and that is generally good enough for me. At this moment in time though, I feel the need to write some of them down.

Why are we here? What is the meaning of life? Why do bad things happen? I believe I have the answer to all of these questions, and it’s simple. We incarnate to this world from a higher plane of existence so that we can experience this world in all its glory, the good with the bad. Every experience we go through helps us grow and mature as an individual part of God/Allah/Brahman/Buddha or whatever other higher power you choose to believe in. We are all a unique part of this higher power and every time we experience and grow we are contributing to the overall growth of this higher, universal power.

Another belief of mine, which might be a little harder for some to grasp, is that we plan out our entire lives and the things we want to experience and learn from before we incarnate to this world. Mothers, Fathers, Sons, Daughters, Best Friends, Kindred Spirits… these are all predetermined by ourselves on the Other Side before we come here.

Knowing this, it’s easy to see why I am the way I am. One of my favorite quotes is “Whatever happens, happens.” I truly believe this! Everything that happens is supposed to happen exactly the way it should – exactly the way it was planned.

Of course, I don’t know if this is true. There’s no way to know, really. But this spiritual belief/philosophy helps me understand and accept all things. A dear friend has a brain tumor? That is awful… for him, his family, his friends… but it’s all those unique experiences from all those individual people that combine and contribute to the growth of all. And it was all planned in advance, by us, and we’ll meet about it and laugh on the Other Side once this life is over.

So to return to my original, personal deep questions in regard to our move to the Pacific Northwest. Was this the right move? Why are we here? Shouldn’t we be closer to family during these trying times? Was it worth the time/expense/stress to uproot my entire family to move across the country?

Yes. We are meant to be here because this is where we need to be. This is where we planned to be. Without this move we most likely wouldn’t have caught Desmond’s diagnosis so early, and Seattle has some of the most amazing ASD resources in the world. We really are lucky to have gotten him into these therapies and programs so early.

Is it hard? Yes. Is it stressful? Yes. Can we do it? Yes. Is it meant to be? Yes. I truly believe there isn’t a thing that life can throw at us that we can’t overcome, because we planned it ourselves in advance. The harder the experiences are the more opportunity for growth, and that’s exactly how it should be. As Franklin D. Roosevelt once said, “A smooth sea never made a skilled sailor.”

Anyone who knows me knows I love video games. As an 80s kid, I grew up in the golden age of Nintendo and Playstation. I’ve played games my whole life- The Legend of Zelda, Final Fantasy, Mario Brothers, Mega Man, etc. Some of my fondest memories are playing Zelda with my Mom, her screaming to “Get him in the butt!” (for those enemies you have to hit from behind). To this day I play games. Jenni can attest! I even keep detailed spreadsheets on some of my favorite characters and the progress I’ve made toward leveling them to their max.

Faced with the diagnosis of ASD, I can’t help but liken this new experience to that of one of my favorite games.

Ocarina of Time, released in November of 1998, is credited by many as the greatest game ever made. I was 14 when it came out, and it has left a lasting memory on me throughout my life. One of my favorite mechanics in the game is something called Hero Mode, or the Master Quest. Basically, it’s an option to make the game more difficult. Less hearts, more difficult enemies, harder puzzles. It’s much, much more difficult, but the challenge makes it that much more rewarding when you win.

Well, that’s how I’m beginning to feel about Desmond and his ASD. It by no means makes him less. In fact, I think it makes him more. Raising him will simply be more challenging, and conversely that much more rewarding an experience. The game is harder, but it’s still the same game, and every accomplishment we make along the way is that much more meaningful. When offered a choice in a game, I would never choose easy mode. The harder the challenge the better!

One example: When Desmond was a little less than a year old he began to use less eye contact with us and not respond when we called his name. At the time I didn’t notice much at all. Desmond was just being Desmond. When we started therapy though, that was one of the first things we started working on, and watching him respond to the therapies has been truly inspiring. Now he uses eye contact almost all the time when we’re playing, and he responds when I call his name 90% of the time. It’s a unique sense of pride and accomplishment now when I call Desmond and he looks up and smiles at me. I have to wonder if I would appreciate a look, a smile, or a hug as much if it didn’t come in the face of adversity.

Today Jenni and I begin ABA training at the University of Washington. I am thrilled and excited to learn all sorts of new methods for helping my little Fox Man learn and grow in his own unique way. I feel like a character in an RPG about to level up some skills to better help in the quest! Alchemy? No. Blacksmithing? No. Lockpicking? Maybe. Fathering? YES! Max out those skills, please.

Start New Game
Choose Difficulty:  easy    medium    hard    pro
Begin!

The place: University of Washington campus, Center on Human Development and Disability. The time: Wednesday, March 22nd, 2017, 12pm EST. Jenni and I had to take a day off of work to drive in from Redmond. The reason: Finding out whether or not Desmond, our little Fox Man, was positive or not with ASD.

A lot had lead up to that moment in time. Jenni and I uprooted our fledgling family and moved out to Redmond, WA a little less than a year ago. Due to that move, the past year has been filled with many ups and downs. UP – All the new experiences the Pacific Northwest has to offer. DOWN – Not having the support of our family and friends. UP – An amazing school for Desmond and awesome jobs for Jenni and me. DOWN – Rain… Lots and lots of rain.

Overall it’s been an amazing, life-altering experience. It’s been hard, sure, but then aren’t all good things in life worth the challenge? It wasn’t until Desmond’s first birthday that we (and by we, I mean Jenni and her amazing intuition) began to notice that something might be a little off with our little Fox Man.

1. He LOVES spinning things. Anything that spins or has wheels, Desmond can spend hours playing with it.
2. Desmond doesn’t really like socializing much with other kids his own age.
3. He is VERY picky when it comes to the textures of food, preferring crackers and yogurt.
4. Desmond repetitively rocks on the couch or in his high chair.
5. He was starting to not use as much eye contact with us.
6. And the big one… Not pointing or mimicking clapping or other gestures that he’s supposed to do by this age.

While any one of these isn’t cause for concern, when Jenni started noting all of them we decided to take Desmond to Kindering, an amazing school out here that specializes in assessments and early intervention. I’ll admit, I was skeptical at the time. “There’s nothing wrong with Desmond,” I kept telling myself. “He’s just learning things at his own pace.” Well, I was wrong. Desmond definitely qualified for Occupational Therapy and Educational Therapy.

Those therapies really helped change my perspective on things, simply because I immediately began to notice improvements in areas I hadn’t realized Desmond even needed improvement. His eye contact became better. He became more social. We learned all sorts of exercises we could implement to help him eat better.

At the recommendation of his OT, we decided to also get him an official assessment to see if he was on the autism spectrum, otherwise known as Autism Spectrum Disorder. That’s where the University of Washington comes in. They had a cancellation and we were able to get an appointment for Desmond relatively quickly. After a few appointments driving out to UW and having Desmond evaluated, we finally arrived at the day of the diagnosis.

The diagnosis: Yes, Desmond does have Autism Spectrum Disorder.

I felt so many conflicting emotions when I heard the news, sitting in that tiny room next to Jenni. Worry for the future. Anxiety about what would happen next. Impatience at wanting to get started doing everything we could possibly do to help our little Fox. Relief at having our feelings and observations validated by a professional.

It’s been a little over a week since that diagnosis, and I am still coming to terms with what this really means for my family. Jenni and I are doing everything we possibly can, but there are days when I still feel like there is more I can and should do. Soon we’ll be starting our own ABA training at the University of Washington, which I’m sure I will write about more when it starts next week. Despite all my efforts though, I’m still filled with worry, anxiety, impatience and relief. But there is one more emotion I feel: HOPE.

What does the future hold? I’m really not sure. One thing I am beyond grateful for is my amazing partner and wife, Jenni, without whom I would have gone on pretending things were okay. Her intuition told her something was wrong, and I’m glad I listened to her. The earlier you start intervention with ASD, the better, and we are starting therapies very, very early. I have high hopes for the future.