Sensory Processing Disorder Took Our Family to Holland
There is a story called “Welcome to Holland” by Emily Perl Kingsley that I always read to my expecting parents while I work as a prenatal instructor. The story talks about this perfect trip to Italy that you’ve been planning your entire life. The plane lands and as you exit the plane, the flight attendant welcomes you to Holland. Holland? That’s not where I wanted to go! You then realize that Holland is not a disgusting place, just different and you must stay, so off the plane you go. The point is to teach them that birth plans don’t always happen as written.
Within minutes of my second son, Jackson, being born I made a comment to the nurse that he had no stepping reflex. Noodle legs. Her reply was, “He’ll grow into it.” For some reason at the time, this seemed totally logical that you grew into reflexes. We took our sweet boy home, ready for another great adventure of watching him grow. Ready for another smooth “trip to Italy” that met every marker of the American Dream with a house, two parents that loved each other and two healthy children. What I didn’t know is that we had detoured to Holland.
Over the next few months, it became apparent that something was different about Jackson. He was extremely colicky, some days crying up to ten to twelve hours or more a day. The only ways to keep him from crying was to breastfeed, hold and keep him skin to skin. The advice immediately started rolling in saying I was spoiling him, overfeeding him, he had acid reflux, etc., etc. I took him to several doctors when he wasn’t meeting his milestones and I was told that he would catch up and that I was overreacting. One doctor suggested he wasn’t walking because he needed orthotics (the orthotic story is an entirely different blog for another day, but let’s just say it didn’t go so well). After being fed up with what our current city offered with services, we decided to move closer to where I was from and where we hoped more resources would be available to us.
Before we were even fully moved into our new home, I had an appointment with what was supposed to be a great pediatrician. The appointment lasted approximately ten minutes, as I was asked a few questions with no introductions and looking superficially at Jackson. It was finally announced to me that “something was wrong with him neurologically”, but he didn’t know what and would have to run some tests down the road as he was booked that day with appointments. I left in tears not knowing what was next. My son was almost two years old, had skipped crawling and still was not walking or talking. Was my son terminal? What was wrong with him?
I came home, hopped on the internet and contacted the local pediatric office in our new town. I literally scrolled through the pictures and profiles of the physicians in the practice and found a friendly face looking back at me, someone that looked like I would be friends with or call to have coffee with. I called and made the appointment. I knew I had hit the jackpot when I poured my heart out to her and explained how no one believed me and she responded, “You’re the mom. If you think something is wrong then I do too and we’re going to figure this out together.” I think I starved the room of oxygen with the sigh of relief that came out of my body. First stop was lab tests for “scary stuff.” She even called me at 11:00pm on a Friday night to tell me that they were all normal so I wouldn’t worry through the weekend.
In the meantime, we gained new neighbors, Janie and Matthew and we became fast friends. I had mentioned to Janie several times that we had struggled with Jackson to the point of taking both of us to get him dressed in the morning, constant meltdowns, the list went on and on. She talked about her son having Sensory Processing Disorder and asked if I had heard about it. She immediately brought me a copy of the Out Of Sync Child by Carol Kranowitz and I dove into the book. I hadn’t made it past Chapter 1 when I looked at my husband, Erich, and with tears and laughter all coming together, told him I knew what Jackson had. This is when I realized our plane had detoured to Holland.
We were appropriately referred for occupational therapy at a local pediatric clinic for physical and occupational therapy. Within a few months, Jackson was finally walking! However, as time went on through therapy it became clear that we were not really making any headway and that he needed something more. I had the privilege of meeting and speaking with Carol Kranowitz on several occasions. So what better resource? I called Carol and asked where we needed to go, as I was in momma bear mode on getting more answers. She suggested we go to the STAR Institute for Sensory Processing Disorder in Denver, Colorado. We spent three months in their intensive program where we learned so much. Again, another blog for another day, but I’ll leave you with the fact that it was the most amazing, life changing thing we could have done for Jackson.
Today, Jackson is an amazing 11-year-old young man that is more of a blessing than any words in any language can explain. Oh yeah, remember that Welcome to Holland story? It ends stating that once in Holland you purchase new guide books and notice that Holland has tulips, Rembrandts and windmills. Holland is beautiful. Yes, you still mourn missing Italy, but you realize that you must enjoy the journey you were given and blessed with. Jackson and SPD have taught us so many things, made us better human beings, better parents, strengthened our marriage, made me more empathetic, made me cry, made me laugh, made me angry, made me an advocate and founder of a non-profit to help other SPD families. Would I take the SPD away from Jackson if I could? Absolutely. Would I take away the journey to Holland? Not in a million years.
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Meggin has recently achieved a long term goal of founding a non-profit organization, Sensational Hope (www.sensationalhope.org), which provides community awareness about SPD in the Kansas City Metro Area. It connects families as well as assists children with SPD in the purchase of needed therapy equipment. Meggin resides in the Kansas City area with her husband of 15 years, Erich, her two sons, Bryce and Jackson, her two furry children (dogs) Chance and Sadie, two Rabbits (Max and Bailey), and last but not least, 10 fish. Meggin is honored to blog for the STAR Institute and is looking forward to connecting with other SPD families.