My story

I’ve had many careers in my life. I’ve been a waitress, a bartender, a dance team coach, a daycare provider, and have worked with people with developmental delays. I have a degree in speech-language pathology and audiology and am working towards a life coaching certification. Currently, I conduct life coaching session for parents of children with special needs and stay at home with my two brilliant children, Autumn (7) and Kai (2).

Kai is a whirlwind of activity. His motto is “I do! I do! I do!” yelled louder and louder with each sentence. He has dimples that you can spot from a mile away, has created his own language (which we call Kaianese), already wants to be a “Daddy”, and LOVES his sister like crazy.

Most people are astounded when my daughter opens her mouth to speak. She may be 7, but even at the age of 3, she was saying words like “actually” and “possibly”. She is quite often described as precocious. She is in first grade and reads at a fifth grade level. Her favorite books are Junie B. Jones, The Chronicles of Narnia, and American Girl books. She loves to sing, dance, say “pinch, poke, you owe me a joke!” (No actual touching involved. There are, however, lots of bad jokes!). Lastly, she has Sensory Processing Disorder with Tactile Defensiveness.

From day one I could tell you that my daughter was different than most babies. Before she was born, everyone said that newborns do nothing but sleep and poop. She had to be forced out of the womb and entered the world holding a sign that read “ENTERTAIN ME!” She needed to be held continuously. And only by momma. Not even daddy would do. She was captivated by books by two weeks old! She had major “melt downs” when we were in large groups of people. We began introducing solids at 6 months old. But try as I might, there was no getting her to eat. After an entire year of trying 3 times per day, and pulling out every trick in the book, I finally gave up. (Remember, I have a degree in speech-language pathology. I SHOULD know how to get someone to eat!) I told our pediatrician. Her response, “It’s just a phase.” No matter what I tried, I couldn’t get my daughter help to eat!

Of course as time went on I noticed more and more “differences”. She had to wear only soft clothing. She couldn’t tolerate socks. I would literally spend three hours just trying to get her dressed and out of the door on a daily basis. She despised haircuts and fingernail trimming. When I cooked, she would run out of the room crying that the smell hurt her nose. She had night terrors. The sun would make her cry. She’d cover her ears when she heard slightly louder noises than normal. She would cry and cry if I left her with a babysitter. She would not go to a nursery in order for us to go to church. I could go on and on.

I think she was about a year and a half when I started thinking about sensory processing disorder. I remembered in undergraduate classes learning about the “new” disorder and found it interesting. Little did I know. It almost seemed providential that I decided to get a degree in speech-language pathology and audiology with an emphasis in early childhood development. I could have never guess that it would help me with my own child.

Anyway, becoming aware that my daughter could possibly have this diagnosis was basically the beginning of an uphill battle of proportions that I never imagined. I went from doctor to occupational therapist to speech path TRYING to find someone who actually knew what they were talking about. I think finding help has had to be one of the most frustrating issues in this whole situation. Finally after 3 years of searching, I found an OT who was trained in Sensory Processing Disorder. (There is no sensory processing disorder certification. And although SPD is not in the DSM, it will be this year!) Autumn began therapy right away in our house once per week. After about a month, we saw pretty big improvements. She was able to wear certain clothing and it wasn’t as much of a fight. Then summer came and with it shorts, flip flops, and tank tops – clothing that is much more easily tolerated.

Fast forward to this February. Feeling like the worst mother in the world because I let my daughter wear Crocs with no socks in the middle of a snow-packed Michigan winter quickly became the least of my worries. Suddenly she wasn’t able to wear ANY clothes, she couldn’t tolerate sheets or pillows, started missing school, and having angry outbursts. Her life, and our lives, were utterly consumed with screams, cries, and sorrow.

We had moved and left our old OT behind. Finding a new one was next to impossible. Finally, by the grace of God, we found a therapy center 50 miles away. This center even specializes in helping kids with SPD. Autumn had a very detailed evaluation. I was impressed, which is no easy task these days.

We have started therapy twice/week. We are so grateful (and fortunate) that our insurance covers it 100%, although driving 200 miles/week is not easy on the budget. We are also brushing and starting listening therapy. I’ll keep you all updated on how things go.

There is now a light at the end of the tunnel even if it is as small as a far off star.

Read more about our life at Adventures in SPDland