Not too long ago I was asked to create a ‘Top Ten’ list of tips for sensational caregivers. This was not a task I took lightly because I know what it’s like to be in that place where you feel no one is listening or understands what you’re going through and you really just want to hear from another caregiver who ‘gets’ it. I didn’t want to give clinical, therapeutic sort of suggestions because that is definitely not my place. I thought it would be best to tap into my own experiences, remembering where we were over seven years ago—as many of you are right now—and what I really needed to hear at that time.
Now I haven’t gotten where I am with my children on my own. I’ve had a lot of help from some phenomenal people. And probably the most important lesson I’ve learned is that we can’t do this on our own. We need that loving guidance…that hand to reach out and hold onto during the rough patches…that person to hug in celebration of the ‘YAY!’ moments. With all of that in mind, here’s what I came up with.
Top Ten Tips for the Sensational Parent
(1) Empower yourself with knowledge: about SPD in general, about your child’s form of SPD specifically as well as about treatment options and support.
(2) Learn about all seven sensory systems: tactile, auditory, gustatory, olfactory, visual, vestibular and proprioceptive. And teach others!
(3) Connect with support networks, such as The SPD Foundation, SPD Canada, Sensory Planet and Sensory Street. There are also fabulous SPD parent support groups out there as well as networks like the Sensory Processing Disorder Blogger Network (SPDBN) that brings together caregivers from around the world to share their stories. Such networks not only give you the support you and your family need but also give you the wonderful feeling of knowing you aren’t alone out there. Find and connect with those groups with whom you feel you can get the most from for your particular situation.
(4) Allow yourself to feel the range of emotions you’ll experience raising a child with sensory needs. It can be difficult at times and it’s okay to feel—just like we’re teaching our kiddos!
(5) Advocating means more than describing what’s wrong with your sensational child; It means seeing the whole child and helping others to do so.
(6) Your sensational child needs to experience sensory stimuli—even if it’s a little uncomfortable or scary at first—in order to teach his brain how to understand and process it effectively. This was something that was very difficult for me to watch at first because my little girl used to be incredibly reactive to most sensory input. I soon realized, though, that Jaimie needed to experience those sensations she’d always avoided so that
(a) she could learn how to cope with it more effectively, (b) she could learn the ‘right’ form of the input she needed and how much, and (c) she could finally learn to self-regulate. Learning all of that with Jaimie then was critical to her overall functioning today.
(7) Teach your child how to interact with his world through play, fun games, crafts and activities. Focusing on fun makes it less scary.
(8) Advocate for your child today so she can advocate for herself tomorrow. Answer questions, give explanations and offer information in a positive way so she’ll feel confident to do it on her own.
(9) SPD is only a small part of who your child is. Help him to accept that part but also to see the other amazing things inside of him.
(10) The Sensational Journey can be a long road with many hurdles to overcome. Be patient, stay strong, trust your heart and, most importantly, listen to your gut.
These are the lessons I’ve personally learned from caregivers and professionals in the SPD Community kind enough to share their own stories with me. But the most important lessons I’ve learned have been from Jaimie and Xander themselves. If we see the ‘sensational’ world through their eyes, we’ll understand so much more: Listen to them, watch them, and embrace their insight.
Please share your comments and tips below!