In the two-and-a-half years since my daughter, Jaimie’s diagnosis with Sensory Integration Dysfunction (SID)-now universally called Sensory Processing Disorder (SPD)-I’ve learned so much.
I’ve learned to pay closer attention to Jaimie’s triggers, how to counteract them and guide her to more effective ways to work through anxiety she experiences on a daily basis as she combats the pain her environment inflicts upon her. More importantly, I’ve learned how to be a better Mama to Jaimie by understanding her better; advocating for her so other people will understand her better; and bringing awareness to SID/SPD. Because in the end, that’s all these children really want: Understanding.
Unfortunately, SID/SPD children can’t always verbally express what’s going on in their tiny bodies in order to help you understand them; they barely understand what’s happening themselves. Through a lot of research, discussions with other SID/SPD parents and my own observations working with Jaimie, allow me to share with you ten things SID/SPD children would love you to know:
1. I’m not a “bad kid.” SID/SPD children melt down easily-especially in the Preschool years. This can lead to an observer thinking these children have behavioural difficulties that simply require extra discipline (this is what people tried to tell me about Jaimie before her diagnosis.) Nothing is further from the truth. SID/SPD children melt down because they become overwhelmed with sensory stimulation that isn’t being processed. I explain it to people this way: Have you ever walked by a playground flooded with children? Now picture yourself standing in the middle of all of those excited, screaming kids: The screaming, the children running around, all the different voices, perhaps different smells… it’s chaos! That’s how Jaimie and other SID/SPD children feel every day about everything. Thinking of it in that perspective can make you understand, perhaps a little bit, the reason they melt down.
2. I’m interested in people. A huge misconception about SID/SPD children is that they withdrawal socially because they don’t like people. Not true. In fact, they’d give anything to be running around with all those children on the playground. But they’re so terrified of being overstimulated they avoid social or new situations so they won’t have to endure the pain.
3. Please give me some extra time. SID/SPD children need a lot more time than other children to get used to new people and situations. It’s not just because they have to get used to the person/situation itself, it’s also because they need extra time to absorb the different smells, sights, sounds and other sensations before they feel comfortable. When meeting someone new, Jaimie can’t even look at the person until she’s listened to and gotten used to their voice and decided their smell is something she can stand to be around. Only then will she look up and communicate. Be patient and give them the time they need to absorb what’s new. It makes a huge difference.
4. I’m a smart kid. “Special needs” doesn’t mean unintelligent. Nothing hurts Jaimie more (or makes me angrier) when people treat her as if she’s dumb just because she has special needs. Once you get her talking, you find out how smart she really is. Please don’t judge SID/SPD children based on their social issues or how they react to things. There’s so much more beneath the surface.
5. I’m not angry with you. This is something I constantly have to remind my younger daughter, Jordhan, of when Jaimie melts down. In that frame of mind, Jaimie she has a tendency to lash out at the closest person to her-usually me or Jordhan. This is because there’s a build up of events Jaimie holds in until that one last sensory stimulus sets her over the top. It’s important for other people to realize, especially other children whose little feelings shatter so easily, that SID/SPD children don’t mean to be hurtful. They just aren’t able to control what they’re feeling and, because of their poor social skills, don’t always know the “proper” way to express what’s going on inside them. Don’t worry, they’re learning how to communicate with you better-just wait!
6. Please respect my personal space. Because SID/SPD children are so much more sensitive than other children, it’s important to remember that even our own personal scent-even if it’s a good smell-can be enough to send an SID/SPD child into an inconsolable fit. Don’t be afraid to approach them just do so while keeping in mind that it takes them a little bit longer to get used to your presence. Ask them if they’d mind you sitting with them; start with activities they’re comfortable with; you can even ask them what they do or don’t like about new people or things. In Jaimie’s case, if people take it slowly with her, she eases quicker and responds so much more positively.
7. I find it hard to focus on too many things at the same time. This is the core of an SID/SPD child’s disorder. Because their brains can’t tune things out, their attention is continually pulled in different directions. They need to learn how to focus on a specific task. We need to give them our patience as they attempt a task and to help them bring themselves back down when they get frustrated.
8. I prefer what’s familiar to me. When an SID/SPD child’s symptoms are quite severe, they cling to what they know and can be rigid about routine. They also shy away from new people or situations. Now, we can’t let our child stick only to what’s new or they’ll never be able to function in the world. But we can start with what they are familiar and comfortable with while working new things into their safe zone. It can be a longer process but that’s how you can help to make an SID/SPD child feel safer when dealing with new things. Remember: SID/SPD children aren’t trying to be difficult, they’re simply trying to get along in a world that terrifies them. Easing new people or experiences into what they’re already comfortable with is a great way to start then, eventually, they’ll actually want to try something new.
9. Please see the things I can do. Even I’ve been guilty of this. We can get so caught up in trying to help our SID/SPD child cope with their struggles we tend to forget what they do well. Every child can do something really well. Acknowledge their talents. Such things can be used in times of frustration when they struggle with things they find difficult. Think of how much it can mean to them just to hear you say, “Oh, John. Look at all of these beautiful drawings you did for me. Not only are they wonderful but you were able to concentrate to do them and you had fun doing it!”
10. I love you, even if I’m not always able to show it. It can be so painful, especially as a Mom, not to be able to give or receive the usual signs of love and affection from our SID/SPD child. If their tactile sensitivity is high they can’t handle even the gentlest of touches (As a matter of fact, Jaimie could only deal with deep pressure-light touch drove her mad. Especially when the wind blew on her skin.) This doesn’t mean our SID/SPD children don’t feel love, or even want to give it; they merely can’t deal with the sense of touch. In Jaimie’s five years, I can count on one hand how many times she’s hugged me by putting her arms on me and not just sticking her head out at me and saying, “Hug.” But I know that she loves me-I can see it in her deep blue eyes. And she knows I love her.
It’s my hope this helps to give you some insight into these often misunderstood children. Aside from all these points the most important thing an SID/SPD child would want you to know is that they are just like any other child…they just need to do things a bit differently.