Exploring the World with Sensory Processing Disorder

Four years ago, I was the mom who dreaded leaving the house, and now our family is departing on a full time journey around the world as The Jetsetting Family.

During the first few years of our son’s life, we thought our dreams of traveling as a family were over, and that we would forever be confined to our home.  Trips to the grocery store consisted of extreme three hour meltdowns. My one-year-old would hold his breath for so long, that he would eventually faint in anger.  A routine sound of toilet flushing led to headbanging. The smell of a restaurant made it impossible to enter, and any change in our routine meant my child was inconsolable.

He was clumsy.  He fell often and had no sensitivity to pain, even fracturing his leg without a flinch. Our life was a rollercoaster filled with moments of extreme happiness that could quickly turn into hours of exhaustive meltdowns. It was hard to come to terms with the the possibility that the future we dreamt for our family was slipping away. The only place he seemed to thrive was in a structured and predictable settings, such as school or at home, if we didn’t have visitors.

But life isn’t always predictable. I quickly lost friends as birthdays and events became impossible to attend. I began to mourn the loss of my once active and social life. We walked on eggshells unsure how he would react to a change in environment. Honestly, I became resentful of my son whom I so adored, but could not understand.

However, every now and then we would have a few good days. My mind would fill with doubts that it was just me. Maybe I wasn’t meant to be a mother after all. Some family members would insinuate that he was too spoiled and needed more discipline. We kept going to parties and traveling for a few months… it was miserable. I looked at other moms and often wondered how they made it look so easy. Why couldn’t our days be the same? I was seeking help from the medical profession and not getting answers, until finally one day someone said, “He has Sensory Processing Disorder!”

You would think in that moment of hearing those words I would have been shattered. But to be honest, it felt as if a life raft was thrown to me, and we finally could be saved! Sensory Processing Disorder (SPD), is a neurological disorder in which the sensory information (visual, auditory, etc.) that an individual perceives results in abnormal responses.

I immediately started researching SPD and couldn’t believe that no one had mentioned it earlier. The checklist included difficulty calming, long tantrums, inability to change routine, lack of awareness to pain, disinterest in toys, oversensitivity to sounds and smells, and difficulty feeding. The description fit our son exactly. I immersed myself in reading, studying, and reviewing  the dreaded WebMD which made me feel relieved and more nervous all at the same time.

We then discovered the Star Institute for SPD in Denver and enrolled immediately. After my son’s evaluation, I read pages and pages of feedback that seemed to highlight only his downfalls. It  was incredibly painful. We started intense occupational and feeding therapy (sensory challenges can take pickiness to a whole new level) at both the Star Center and Children’s Hospital Colorado.

The first few weeks were the hardest as the medical professionals tried to gain an understanding of our son. He tried to bite them, hit them, and wasn’t a happy camper. It left me feeling defeated more than ever.  We stuck it out though, and before we knew it we were seeing small improvements! It felt like we had a team behind us rallying to make life easier. We tried to hide our harsh reality, posting pictures of his happy moments and tried to convince ourselves life was good (never compare your life to social media; a lot happens behind the scenes). I eventually found that opening up about our struggles and writing poetry helped me cope.

I learned at the Star Institute that the most valuable thing I could do was not just take him to therapy, but to learn how to implement it myself and incorporate it into every possible aspect of life. They also focused on the overall well-being of the family, which I feel is so often missed.  We learned that making small adjustments throughout our day made a huge impact on his anxiety and ability to cope. For a while, he wore headphones in loud places, we avoided restrooms with multiple stalls, and created a schedule with photos to help with his rigidity in routine. We went to the extreme and moved into a home with a gym in it so I could do as much occupational therapy each day as possible.

We were doing 10-20 hours of therapy a week on top of everything we implemented at home, and we started to see changes within months.  A year into our therapy, we were able to take small trips again! We worked with my son’s team to arm ourselves with the tools we may need on our trip to make it more successful. We also went into each trip with the mindset of “expect the worst and hope for the best,” because if there is one thing we have learned in this journey, it is that high expectations can lead to the biggest disappointments and even depression. We ended each day talking about any small victory (no matter how small). We did this to try to remain as positive as possible despite the many tears shed.

Over the years, thanks to early intervention, we have seen our child blossom from a child scared of the world to one who is full of life and curiosity. If you met our son today you would have no inclination that our journey had a rocky beginning.   He is hilarious, smart, outgoing, and ready to take on the world and travel FULL TIME! It is still hard to believe we made it this far and that we now live a life without needing to plan ahead or worry about how he will react! The only large obstacle we face as we embark on this adventure is his feeding challenges, as he still eats very few foods (no pasta, meat, rice, beans, or vegetables).  We are dedicated to helping him overcome his challenges along the way and will continue to keep in touch with the Star Institute to be sure we stay up to date with current research.

We lost precious moments with our son because we were stressed and overwhelmed. We spent hundreds of hours in occupational therapy, feeding, and applied behavioral analysis, to ensure our son received the care he so positively responded to. It was emotionally, mentally, and financially depleting, and in hindsight, it was absolutely worth it.

Seeing our son progress and thrive made us realize that the dream that once seemed impossible was possible again and that we shouldn’t take that for granted. As we embark on our full time travel adventure as The Jetsetting Family, we believe that we get those moments back that we once mourned for and thought would be lost forever. We never expected the hard journey we endured throughout those years, but are glad now that we will appreciate the journey so much more because just being at an airport or on a flight are huge milestones for which we worked hard.

I ask that if you see a mom struggling with her child at a store, don’t just assume the child is spoiled. Not all disabilities are clearly visible. The judgments only break a struggling parent down further. Also, if you are a mom with a kid who struggles ALWAYS remember, your child is having a hard time, not giving you one! And if you are a friend, try to carve time out and ask what setting would be best to meet in as the journey at the beginning is very lonely and isolating.

If you believe your child struggles and is over or under responsive please read the sensory checklist here and talk with  your child’s pediatrician. They might refer your child to an occupational therapist for an evaluation. They might not–and I urge you to trust your instincts, and push for an evaluation even if others push back.

If you want to follow our adventures, you can find us on Instagram or on our Blog.

Being vulnerable is  never easy, especially when it involves your kids who don’t get to choose. I made the decision in an effort to help moms who are struggling, hopeless, and confused.  We are sharing our story to give hope to those who are beginning their sensory journey. Every child sees improvements at different rates. Some respond to treatment better than others. I hope comments can remain respectful and kind, if you disagree please scroll on.

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