As the Parent Connections Group host here in Kansas City, I often get phone calls and emails from parents that are new to the SPD world. Often they’ve been told that their child has “sensory issues” by a pediatrician or at school but no one ever gives them any direction past that point. Many times no one has even explained what “sensory issues” mean much less what to do to help them. All this leads to a ton of frustration. As the mom of Jackson, my 11-year-old son who has SPD, I can completely sympathize. I remember all too well being in what seemed like a tunnel with no light at the end of it. Why was it so hard for me to find someone to help us?

As a parent, I will tell you the first step is finding a pediatrician who is on board with you and doesn’t look at you like you have a unicorn horn growing out of your head when you mention the term Sensory Processing Disorder. (Trust me, I’ve been tempted to reach up and feel for a horn just to make sure I haven’t grown one before after receiving many odd looks by various health care professionals.) Is SPD new to the medical scene? Kind of, yes. However, the terminology isn’t as rare as it used to be. As parents, we are often intimidated by medical professionals. I have often fallen victim to walking out of an appointment and wondering why I just agreed to something that felt so wrong and realized I was simply afraid to speak up.

After one failed attempt at finding a pediatrician when we moved, we hit the jackpot by complete chance the second round. We are now the proud patients of a doctor that I would move across the country to follow if she ever decided to leave us. When I first approached her with the Out-of-Sync Child book by Carol Kranowitz and told her I thought this was what Jackson had, she said she had heard of it but wasn’t very familiar with it. She took the book, called me three days later after reading it and said she was totally on the same thought train and asked me what we needed to do. What? You’re a doctor and you’re asking me to be part of this decision? I was on cloud nine and told her that it appeared we needed to go to occupational therapy with him. She didn’t blink an eye and wrote the referral. Over the years, we have continued to work as a team for both of my boys. Are you ready for this one? She has actually called me to ask me my advice on sensory situations with other patients and how to best help the child or family! I reminded her once that I was just a mom and she said, “That’s why I’m calling you. You live with this day in and day out.”

I have put together what I call my “elevator speech” and have it ready at all times. It’s my “how can I quickly educate this person about SPD in less than a minute if we were on an elevator ride” speech. I find that more times than not, it intrigues the other person enough to ask questions and I gain another few minutes of their attention to explain it a little more. This has come in handy many times when we’re walking into an urgent care facility, ER or other physician’s office that gives me “the look” when I answer the “does your child have any existing medical conditions” question. If your child is old enough, it helps if they have an elevator speech, too. It’s also one giant step toward advocating for themselves!

My point is, if you haven’t found a pediatrician that you feel hung the moon, go find one! They are out there. Yes you may have many other doctors involved in your child’s care, but there needs to be that special one that is always your home base, to be on your team one hundred percent. Having worked in the medical field I can assure you that you won’t hurt their feelings by moving on if they’re not on the same wavelength as you. Who knows? Maybe they were as uncomfortable as you were and it’s a relief to them that you’ve moved on. At the end of the day, YOU are the team captain for your child and all players need to be on the same team with you. The famous pediatrician, Dr. Spock, once said, “In automobile terms, the child supplies the power but the parents do the steering.” So jump in the driver’s seat my friends. We’re on one crazy SPD road trip!

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

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.