Coping with SID/SPD

That was the first thing I had to learn and accept when my daughter, Jaimie, was first diagnosed with SID/SPD. It's a part of Jaimie, and she'll have to deal with it for the rest of her life. Like any disorder or illness, in accepting it we can take a more proactive approach in coping with it. I won't lie to you: the process is long and bumpy, especially during the preschool years. There'll be days where all you'll want to do is flop yourself down on the floor and scream, yell and cry right beside your child. But things will smooth out as time goes on.

In the meantime, allow me to share with you six things that can help your family cope a little more easily with SID/SPD:

(1) Know the difference between coping and cushioning: Band-aid cures are temporary and can actually cause more damage in the long term. If we're helping our child to avoid people or situations because of the potential discomfort it may cause, we're cushioning. If we encourage them to try new things with a coping method and a time limit, we're coping. Believe me I know how hard it can be to expose your child to things they don't like and watch them go crazy. But if we cushion them too much, they'll never learn to deal with the things they'll need to (such as meeting new friends, school, the doctor's). I've always found the best way to deal with things is knowing what they can handle day-to-day. Then take it from there.

(2) Learn to let go...a bit at a time: As an extension of the above point, we need to let our child go one baby step at a time to explore their environment. There'll be days when your child won't have the courage to leave the back yard. But on some days, they may feel brave enough to run out and talk to another child. If they do, let them. And praise them to high hills when they do! They know you're there to come back to if they get too overwhelmed.

(3) Prepare them ahead of time for new situations and experiences: We've found it's better to warn Jaimie a couple of days to a week, depending on the event, for upcoming things. Big events like Grams coming for a visit, going over to a friend's house or going shopping can cause sensory overload. Children with SID/SPD seem to respond better to events if they know about it ahead of time than if they're surprised with it. (Be prepared though, if your child worries about things or has sleeping difficulties already, warning them ahead of time can disrupt sleep or cause night frights.)

(4) Bring a "comfy toy": In our house a "comfy toy" is an object Jaimie carries around for comfort. Jaimie has two things she goes everywhere with: her beanie Tigger to squeeze and release anxiety; and her blue "soodee" (pacifier) to block out stinky smells or that she smells for comfort. The key is to teach them to let the toy take away their bad feelings until they get home.

(5) Have a wind-down place after stressful situations: After a shopping trip or visit with friends a child with SID/SPD needs a quiet place to wind down. Anything like a small pup tent set up in the corner of the room filled with their favorite toys, books and a little light; a section in their room bordered off with pillows or a blanket; a chair set up by a bookshelf or even a closet. The place should be away from busy places in the house as they use this special place to go to if/when everyday things become too overwhelming. What we're teaching them is that everyone needs to take some quiet time once in awhile and how to recognize when they need to take that time.

(6) Help others to interact with your child too: If other people aren't aware that your child has SID/SPD, or understands it, they won't be able to interact with your child properly. Be honest with people and tell them in what ways they can still share a fun experience with your child. Grams can only visit Jaimie a few times a year. As much as Grams would love to grab Jaimie in her arms and give her a big kiss, she understands Jaimie's disorder. Grams has been wonderful and works with Jaimie within her comfort zone. That's why Jaimie has grown to trust and have some fun with her. Jaimie still needs to be prepared for Grams' visits but she looks forward to seeing her a little more each time. Giving people information about SID/SPD is so helpful-to them and to your child. Answer questions, give helpful tools and offer advice. That way, everyone can enjoy a visit or outing with less likeliness of a meltdown or hurt feelings.

The most important thing is to never forget that our SID/SPD children love us and they know we love them too. If you take things slow, help them to cope with things when life gets too crazy and be there when they need you, they'll be brave enough to show you.

Close to Christmas of 2005, I received the greatest gift from Jaimie: a real hug. It was the first time since she'd been born that I felt her tiny arms wrapped around me. For her, it took tremendous strength and courage. For me, it was something I will always treasure. So, hang in there. What we do to help them means a lot to them, even if they can't always say so. And it makes a difference.