The First Step to Helping a Special-Needs Kid: Get Organized
An interview with Carolyn Dalgliesh, author of The Sensory Child Gets Organized.
For the parent of a special-needs child, it’s often the small things—getting her dressed, out the door, starting homework—that feel like monumental obstacles. Carolyn Dalgliesh had no idea how much her daily life would change when her two-year-old son began showing signs of developmental delays. And while her child received support at the doctor’s office and at school, she felt unprepared for the changes she would need to make at home. To get ready for the challenges ahead, Dalgliesh, who had experience in the business world in sales, customer service, and recruiting, focused her business skills on rejiggering life at home.
The strategies she learned for coping turned into a book. Dalgliesh’s The Sensory Child Gets Organized: Proven Systems for Rigid, Anxious, or Distracted Kids is a practical guide written from the perspective of a mother and professional organizer—not, it should be noted, from someone qualified in the mental-health field. Dalgliesh uses her own experience to help make daily tasks more manageable for sensory children—a term that includes sensory processing disorder, AD/HD, anxiety disorders, autism spectrum disorders. In turn, her changes make daily life more peaceful for the whole family. I spoke with her about how to organize routines using structure, visual aids, and communication devices and about the importance of keeping an open mind about how parenting should work.
What was it like when you first found out your son was diagnosed with sensory processing disorder?
Because he was a high-functioning child, he was eligible for very limited services, yet we were pretty overwhelmed as parents learning his new language and how we could support his experience at home. I felt like there was a real gap between essential clinical support and practical at home solutions. I really wanted to be sure that for my family, we had experiences of real connection and real fun and relaxation, and not always stress. I felt like there were not a whole lot of tools out there as far as teaching parents how to learn that new language. My goal was to have a concrete, tangible tool for parents.
You use the term “sensory children” to refer to children who have special needs. What do you include under this umbrella term?
Another word that could be used is “sensitive.” Often, kids at a young age who are starting to show challenges are diagnosed with Sensory Processing Disorder because the challenge that they’re having is the ability to process information through their senses and use it effectively. When I looked at the profiles I want to support, I looked at the common diagnoses—sensory processing disorder, AD/HD, anxiety disorders, autism spectrum disorders—and tried to pull out common behavior challenges. My goal is to support children whose behavioral challenges affect their attention, anxiety, rigidity, emotional regulation, and executive functioning, or the ability to plan and organize.
Why aren’t these challenges addressed at school or by doctors?
Unfortunately, a lot of kids are living with some level of these challenges. Because there is a need, and available support is maxed out, parents really want to know how to do this. It’s a very counter-intuitive process initially. When you have a child, you think it’s going to be exactly how it was for you growing up. Or how it was in all those baby books you read. And when you come to a place of realizing that your parenting experience is going to be very different, you as a parent need to make a big shift. While the clinical support is so important, and parents need techniques from doctors and speech therapists and occupational therapists, I know from our experience that in those meetings we were getting very focused support and tools around maybe one situation. And what I wanted was to give parents a map, tools that would work in any situation, so they could start to learn that new language.
How can parents move away from their initial ideas about how to parent?
This was such a hard one for me. I have always been very innately organized, and my organization looked one specific way. You might say “rigid” in my own way. When I had my own child, and my way of organizing and doing things didn’t match his way, I had to do my own cognitive restructuring. I have a sensory organizing worksheet in the book that is based off something I made for myself when I was learning how to support my child. I’d sit down daily and ask myself: What are the things he loves to do right now? How can I build that into our day? What are the times of day or transitions that are really hard for him? How can I support those? I really needed to prepare myself for what each day might look like. When I got prepared, everything shifted and I had a new level of acceptance and joy of parenting.
How can parents learn to be compassionate rather than empathetic, as you suggest? And why is this important?
When you come from a place of too much empathy, it limits your ability to advocate for your child. When you’re too in their experience, too judgmental of their experience, it impacts your ability to be objective. When you can shift to that place of compassion where you trust that your child will learn how to do this, you can come up with strategies to support them.
I imagine that’s easier said than done—and that for many parents, their child’s heartaches become their own.
Absolutely. The other thing I often see as a professional organizer is a parent getting stuck in the belief of what parenting looks like. The right and wrong, the punishment for not doing a specific behavior, and what’s really hard but very important is that, instead of flexing your parenting muscle after an experience, you’re going to flex that muscle before the experience: in the preparation, in the visual aids, in the social skill training. It’s a pretty powerful shift, if you can make it.
You also help adults get organized. Do you use similar tools for special-needs children and adults?
Absolutely. I work with a lot of small companies and now also with adults with home offices, since that’s become so mainstream now. When I started working with sensory families, I started to see that a parent would have a similar challenge that a child would have. It’s not out of the ordinary at all, if you think about the genetic component that comes into play with AD/HD or anxiety disorders. There would often be more than one family member I’d support. The same strategies worked. Breaking a task down, creating a visual aid, eliminating external stimuli—those are the same key principles for adults and children. It also helps if the parent and child are learning this together.
You place a huge emphasis on visual tools to help sensory children get organized. Can this help children will all kinds of different behavioral needs?
The core tools of sensory organizing support all kinds of profiles. If you have a distracted child, the visual homework example will help keep them on task. If you have an anxious child, the visual homework will help them know what’s coming. If you have a rigid child, the homework plan will give them a map of the desired and undesired activities, giving them a mix of doing something they love versus doing something that’s harder. For the child with executive functioning challenges, a visual homework map will give them a plan. It’s a small tool that supports all of those challenges.
While learning to parent your own child, or in researching this book, have you found any theories or books particularly influential?
One of my all-time favorite books is The Explosive Child by Ross Green. He addresses similar profiles I aim to support. I loved his general philosophy that kids will do well if they can, versus if they want to. It made a lot of sense to me. When I started believing that kids will do well if they can, it made me understand why sensory organizing was so important. If I spent the time beforehand to give my son a map of what to expect, he will be successful; he has the tools. It was a life-changing book for me.
Where do you think your book fits in with the other books for helping children with special needs?
My book is about the total meeting of two worlds: the special-needs world and the organizing world. I have a lot of parents say to me, “Gosh my child doesn’t even have a diagnosis, but these tools are going to be helpful.” I’m taking special needs and softening it a little bit. It can be an intimidating world. I’m trying to give people access to everyday tools they can use to make life at home more enjoyable and more peaceful.
You often recommend that parents give their child a choice in decision-making in order for them to feel empowered. But what about children who aren’t great at communicating verbally?
I have not worked with too many non-verbal sensory kids, but I know from my own research that these kids are as intelligent as everyone else, they just don’t have the ability to verbalize. But when they’re given choices in a visual format, there are so many apps now that non-verbal kids are using on iPads to communicate. So for going to a restaurant, they can use an app with a voice-response, so they can tap on a choice. There are ways to tap into the power of choice in a very specific visual format, using technology.
In many of your examples in the book, you suggest partners divide caretaking tasks. Do you also work with single-parent families?
I work with both couples and single-parent households. Unfortunately, there’s a pretty high level of divorce in families of special-needs kids. There are pluses and minuses to both experiences. When you’re dealing with a single parent, and they’re really plugged into learning their child’s language and supporting them at home, everyone’s on board. The challenge when you’re working with a couple is that one person is plugged in and on-board and the other isn’t quite there yet. So you need to get everyone on the same page. If our partner approaches things from a different angle, it can be a strength. But if you’re on a different page about how to parent your special needs or sensory child, that can be very hard.
If you were writing a book for parents on how to stay sane, what would your top recommendations be?
The biggest advice I have is the shift in what parenting is going to look like. The idea that it’s not going to be a reactive experience anymore, it’s going to be proactive.
What do you hear most from parents in response to your techniques?
What I hear most is “Oh my gosh, I need this book for me.” A lot of adults say that. I think when you’re able to learn this together with your child, and as an adult look at what’s hard for you in this, and what you can support in yourself, it’s going to automatically put yourself in a softer place to experience that with your child. That’s the power of doing this as a family.
With the way people are using technology, and devices, in their lives today, do you see new challenges for parents of sensory children?
For kids that are prone to distraction, technology plays into that. You have to be really mindful about how you use it. Kids who aren’t great with handwriting may be using an iPad in school to help with that, which is a huge support. The minus is that they could have 15 windows open at once and be flipping back and forth between things, which isn’t supporting their sustained mental focus.
Many parents turn to these devices as a way to help keep their children occupied during difficult times, like mealtimes or on the plane. But is there a danger on relying on devices this way?
I think it can be used if you can build it into a bigger map. If flying is difficult for your child, you want to be mindful of setting up a visual schedule for them and building in rewards for when they get through something difficult. You might bring games or coloring, or other things that would distract them or reward them. You want to build their ability to be competent getting through challenges. The way to get them to do that is by creating a plan.
What has your experience with your child taught you about yourself?
I am as rigid, anxious and distracted as my own child, but in completely different ways. When I was able to see that part of myself, it made the journey of learning his language much more joyful. We were on the same page because I was learning how to see the world in a different way. It ended up being a great thing.
This interview has been edited for clarity and length.