Mar 26

To Play Date or Not to Play Date?

While cleaning my son Tristan’s room I found a piece of scrap paper with his distinct pencil scrawl.

Things I hate:

1. When my brother talks during my computer turn.

2. Parsnips.

3. Play dates.

I knew my son was annoyed when other children came over, but I had no idea his disdain was such that it necessitated the making of a written list.

My 8-year-old twin boys are managing their sensory processing disorder (SPD) very well these days, but its presence still infiltrates every fiber of our lives. Will is more of an extrovert; he loves play dates and pesters me to schedule more of them, while Tristan can barely get through one every couple weeks without melting down or shouting at his guest as if they were an intruder.

Play dates have always been an issue for us. Both prefer to play at other people’s houses, with different toys and new experience, and they usually behave better out than on their home turf. But we don’t get invited to other’s homes as often as our neurotypical friends, and when we do, we’re not always invited back a second time. Thankfully, my boys haven’t noticed yet. The lack of play dates on our social calendar has puzzled me. I want confirmation from other parents. Is it their behavior (or mine :))? Is it because the chemistry isn’t right between the kids? Is it because you’re perplexed by my son’s SPD and/or anxiety? I try not to take it personally, but inside it hurts a little when I see regular play date photos on Facebook and we’re not in their loop.

Instead of talking about feeling left out, I tell my boys, “If you want to be invited to someone else’s house for a play date, the first step is to invite them over to yours.” But I’m struggling to balance Will’s desire for a daily play date with Tristan’s complete contempt for them.

I can see both perspectives. Will makes friends easily, is flexible, and generally resolves issues without much fuss. Play dates are fun for him. Tristan, an introverted book worm, doesn’t seem to need friends, and is bothered by guests who touch and move his toys, play noisily, and make a mess that he has to clean up afterward. For him, there is no upside. Despite Tristan’s dislike, I viewed play dates as good practice for him, forcing him to manage his feelings through challenging social situations with his peers. But in public school, he gets that practice all day long.

I want to accept that Tristan doesn’t need friends, that he might be a content loner as an adult. But as an introverted scientist and writer who, even in her 40’s, is still yearning for deeper, meaningful friendships, I also want Tristan to have the skills to make and enjoy friends, even if he chooses not to use those tools as an adult.

Inside I know that we’ll all be fine, no matter how many or few play dates we have. But so far, none of us is completely satisfied with our journey through the complex world of the elementary school play date. I can’t even let myself think about how this will morph as we head into middle and high school. Have play dates been an issue for your family? I’d love to hear your hopes, fears, and suggestions, so please post them here, and thanks in advance for being a supportive member of this ETL community.

Mar 12

Diagnosis: Bane or Blessing?

In the Huffington Post article, Is Sensory Processing Disorder the New Black?, the story of mom Samantha and how she handled identification, diagnosis, and treatment of her daughter Lucy’s neurobehavioral disorder matches closely my own experience with my twins who struggle with Sensory Processing Disorder (SPD) and pyroluria, and echoes the voices of many of the parents whose essays appear in Easy to Love But Hard to Raise: Real Parents, Challenging Kids, True Stories.

Like Lucy, my boys presented with a wide variety of symptoms, each of which could be connected with a handful of potential diagnoses including Aspergers, Attention Deficit Hyperactivity Disorder (ADHD), and Obsessive Compulsive Disorder (OCD), but no disorder on the books described our children completely. Also like Lucy, when we turned to our naturopathic physician and modified their diet and nutritional supplements, we began to see dramatic improvements. Those around us said, “Perhaps they’re growing out of it,” but we knew that behind the improvement were desperate, hard-working parents searching for a solution, unsatisfied by a band-aid.

Next year, my 8-year-old boys will likely test out of their public school special education status. Our lives look drastically different than when we entered preschool three years ago. We wouldn’t be where we are now if we hadn’t found our SPD diagnosis and opened our minds and homes to changes in diet and supplements with help from our naturopathic physician, Jean McFadden Layton, nor would we have maintained our sanity in the process without the supportive community here at Easy to Love….

Article authors Heidi Brod and Kelly Dorfman, MS, LND seemed to be writing about us all,

“Samantha stopped blaming herself for a child overwhelmed by anxiety and mood issues. She also started to realize the depth of a mother’s guilt. It sapped all of her energy, leaving her tired and depleted. I think of Samantha’s story and I’m reminded as a woman and a mother, that at some point, we need to be detectives, follow our own hearts and instincts. Nobody knows our children better than we do. We also need to give ourselves a break.”

So here’s to all you tired parents reading this blog and the HuffPo article, seeing some part of your life or your children there. Brod and Dorfman are right, you deserve a break, so give and take it freely.

Feb 08

More Facebook Support for Sensory Processing Disorder

Bless the Internet. When I’m having a hard time coping with my twin’s Sensory Processing Disorder (SPD) or anxiety, I search for two things: books with new tips and other parents who understand. I’ve found the Easy to Love… Facebook page to be so vital to my day, I’m thankful that more and more resources are available to parents through literature and the Web.

Yesterday I stumbled across this little article by Occupational Therapist Bob Trapani at, a Cayuga County, NY newspaper that explains Sensory Processing Disorder (SPD) in a way that most anyone can understand. I’m going to send it to the relatives in hopes that they might be able to really comprehend our “invisible” disorder.

The article also mentions new Facebook support pages for parents of children with SPD and for occupational therapists. The pages are NY-based, including advertising local support meetings, but relevant articles and commiseration are also posted there.

Where are you finding support as parents of children with SPD? We’d love to hear from you.


Dec 15

“Mine!” “I want…!” “More! More! More!”: More than the usual behavior problems of an alphabet-soup-labeled ETL child

I was less patient than normal this morning as I pushed and prodded my 11 year old ETL daughter, Natalie, through her getting-ready-for-school routine. Continue reading

Aug 17

Embracing the Roller Coaster

My boys are in drama camp this week, their last camp of the summer. This Saturday, camp will culminate in two performances of Snow White and the Seven Dwarfs. Because my boys limitations are “mild” and invisible to most strangers, I try to “mainstream” them as much as I can.

They have sensory processing disorder, a metabolic disorder (pyrroluria) that looks a lot like Asperger’s that we treat with vitamins, and mild anxiety. Most people who meet them at first don’t even realize they aren’t neurotypical. They do so well at times, and I’m so used to their issues, that I wonder if the labels need to follow them to new situations. I think, Maybe I should let the labels go, not mention them to the camp counselors, maybe they’re close enough to “normal” that no one will notice. Maybe my kids are typical enough that I’m not even qualified to blog at Easy to Love. Then, when I turn off the autopilot and pay attention, I’m reminded that the therapies have helped but my boys aren’t “cured.” I realize that this community is where I belong, because they understand and can relate to my situation.

Continue reading

Aug 03

An Anxious Trip to the Dentist

Today I took my seven-year old twin boys to the dentist we’ve been seeing since they were a year old. I was relaxed about the visit. Because it’s a pediatric office, they’re equipped with TV screens, headphones, and lots of other distractions to handle the standard level of anxiety that most kids have during a visit. I’ve never told the dentist that my boys suffer from Sensory Processing Disorder and anxiety. I’ve been trying not to label them because they’ve improved so much in the last couple years…except for here and there.

Photo by theloushe on flickr

When my boys were three and four-years old, they would get so upset that I felt like I had post-traumatic stress after each visit, so I swallowed the guilt and only took them once a year. Now that they’re older, they haven’t had more than a few tears at each visit so I was doing the happy dance that we were beyond dental-related anxiety.

Tristan said as he climbed out of the car this morning, “Mom, I’m feeling anxious. I think I’m going to tell them that.” I was so proud that he verbalized his feelings that I almost cried. I encouraged him to tell them and asked if he wanted me to come in to the room with him. “Definitely,” was all he said before running off to play with the waiting-room toys.

I tried to stay calm in my body and mind. They say that some kids are sensitive to their parent’s feelings like a dog that smells fear. Maybe if I stayed calm, they would too?

As we waited, I overheard the receptionist explain to a dad their office’s “no parents” policy for any procedure other than a standard check-up. “Most kids do better when the parents aren’t in the room.” She went on to explain that they also want parents to wait in the lobby for anyone over eight-years old. My internal siren started to roll slowly.

For my kids, she might be right. They probably are more prone to cry and freak out if I’m standing right there to make them feel safe and comfortable. But the idea that the office has in place a blanket policy that bans parents got my hackles up.

I’ve always wanted to be in the room for my boys check-ups. I like hearing what the dentist says to them, asking questions as we go. To me, my children’s health care should be an interactive experience.

When they called in Will, who said nothing about feeling anxious, he ran in, never looking back. So I stayed in the waiting room. I thought, let’s try out this “no parents” policy and see what happens. Fifteen minutes later they called in Tristan, who grabbed my hand, and immediately told the hygienist about his anxiety. Thankfully, she sounded sympathetic and took him right in.

As we walked past Will, lying back in the chair, I could see that he was crying, he had his legs drawn up to his chest, and he was moaning. I stepped into the room to find that he didn’t like the taste or feeling of the fluoride coating they’d painted onto his teeth. A minor issue, but his reaction was escalating. I tried to keep quiet and listen. The hygienist finished quickly and told him he was done but he was not calming down. I knew that all he needed was some deep pressure and comfort and his anxiety and oral sensitivity would subside in a few minutes. So I pulled up a chair to give him what he needed, the whole time listening to what the hygienist was saying.

“Will, you’re over reacting. It’s not that big of a deal….Don’t be silly, its raspberry flavor….You’re making way too big a deal of this…You’re making way too much noise for what this is.” The more she talked, the louder he got, tears running down his face, drool hanging from his chin, and the more agitated I became.

That’s when I interrupted her.

“You don’t understand his disorder, so please stop your comments now,” I said in a calm, low voice. Then I went back to squeezing Will’s shoulders (deep pressure) and made him look me in the eyes to deep breathe through his panic. Within a minute he started swallowing again and within another he was clinging but calm.

But I wasn’t.  I was on the verge of tears. I felt exasperated, defensive, and embarrassed that I didn’t handle the situation better.

We walked into the room with Tristan, who was having no trouble at all, and I explained to the dentist that it was probably time to put a note in the boy’s charts about their anxiety and sensitivity. He was understanding and said that he would talk to his hygienist about making her comments more positive.

I don’t want to change dentists, but I drove away wondering if they were the right fit for us. Are their policies too rigid for us? Would anyone else in town have more experience with special needs? Was I wrong to correct the hygienist? Am I the real problem?

I realized that I assumed that hygienists would be trained in how to deal with real anxiety, not just the standard amount that most kids experience. But are they? If I found an article for the hygienists and sent it to them, would they be open to the education, or would they just think I’m some crazy, critical, hover mom who can’t let her boys grow up?

How have you, as a parent, dealt with professionals regarding your child’s specific issues and needs? Thanks for reading, and I look forward to your comments.

Jul 09

Summer Vacation Success!

Some of my friends might think I was asking for disaster by taking my seven-year old twins, who suffer from Sensory Processing Disorder, on a 600-mile road trip (each way) to go camping and river rafting in California. But we did it last week and it went way better than I could have ever dreamed.

The whole trip was planned to give the kids a positive experience. I’ve noticed in general that when I can focus on meeting the children’s needs, rather than trying to make them fit into adult desires, we have the greatest success.

Mt. St. Helens, WA

The long car rides were the most challenging, despite my efforts to provide them with fresh library books, books on CD, healthy snacks, and road trip games (“Would You Rather” was a big hit). The kids still got physically uncomfortable, battled carsickness, and needed the hour of playtime we planned for the middle of each road day.

Another key element to our success—I set my expectations very low. As a perfectionist, this was a particular stretch for me. I wanted it to be a great trip for everyone, but knew from past experience that we might all be miserable and sick of each other at times.

We also made sure we had a lot of support. Caring adults outnumbered the kids two-to-one during the rafting and camping. Three grandparents (with a combined total of about 70 years of rafting experience), another family that understands the parenting of sensitive kids, and family friends who work with disabled children, rounded out our experienced rafting crew.

I was most impressed by how my boys were able to conquer their own anxiety. Both my sons struggle with tactile defensiveness, but it manifests in different forms. One cries and becomes “paralyzed” with water contact—he doesn’t like to be wet or splashed—so river rafting through rapids was a great challenge for us all. At first, he was exuberant and couldn’t wait to go. Then we had the safety talk that covered his rescue if he was thrown out of the raft, he was suddenly begging to stay behind. I’d been reading about a method for overcoming anxiety called flooding and systematic desensitization. This vacation was excellent in that regard. He screamed bloody murder through the first rapid (flooding), but seconds later his fear was gone, “It’s like a water roller coaster!” We rafted for four days, with the flattest, easiest water in the beginning and gradually progressed to larger rapids (systematic), while ensuring the children were never in real danger. By the fourth day my hydrophobe was climbing into the calm water all by himself for a swim alongside the raft, the highlight of my trip. His brother declared, “Water is my new best friend.” Without our supportive family and friends my husband and I might have given up before we’d even set foot in the raft.

Our other son can’t stand to have dirty hands and feet, an inevitable situation on any camping trip. By the third day of whining and crying about his uncomfortably sandy feet (even though we could only see about ten grains per foot), his dad ingeniously made a “foot care kit” that our son could use to attend to his own feet, taking us out of that exasperating loop and putting him more in control of his own situation.

Over the years we’ve noticed that our boys are the most manageable when their environment is predictable and controlled, but we’ve also witnessed huge developmental leaps after they’ve overcome the challenges of unpredictable summer vacations like camping and sailing. I usually return from a vacation needing another vacation and wondering why we bothered.

As parents, my hubby and I could easily become grumpy that our children’s behavior was keeping us from enjoying our outing. Crankiness is then followed by guilt and shame that we are not more patient, mature, and appropriate. But this vacation was easily the best we’ve experienced since the boys were born. This time, I’m still arriving home tired and ready to unpack, but not as grouchy because the boys are getting better at managing their own sensitivity and anxiety. We’ve discovered the magic vacation cocktail: low expectations and lots of beer and grandparents.

We have a week-long sailing trip with two grandparents planned for August and for once I’m actually looking forward to it. My hopes are high that the confidence the boys gained over this vacation will carry over to the next trip and into the rest of our summer.

Jul 08

HELLO! My name is: Eve; Part 2; Infanthood

In my first post in this series, I promised to introduce you to Eve. I’ll do so, but first, a little background:

A few months back, a marketing company conducted online surveys on two ADHD-related social media venues that are popular with parents of kids with ADHD. One was a Facebook page; the other a blog that also has an active Facebook community. The surveys were designed to find out what the parents who frequent these sites are looking for. The answer came through loud and clear: “We want to feel like we’re not alone in dealing with ADHD.”

The upcoming book that inspired this website, Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories ( is also dedicated to providing what parents say they want most: to know that they’re not alone in their special-needs parenting journeys. In the book, 35 parents of “Easy to Love” (ETL) kids (many of whom also contribute to this blog) share triumphs, their mistakes, and their inner-most feelings; from the strength of their love, to the darker feelings that it’s hard to admit to having.

“Easy to Love but Hard to Raise” children are those with ADHD or other conditions that take the already difficult job of being a parent and add to the challenge.

Each of our parent-authors’ individual stories is a unique and personal gift to parent-readers. Those essays, alone, would have created a valuable book for parents. But, a completely unexpected “bonus” gift arose as the essays were merged into a collection. When the essays are read collectively certain patterns emerge; of feelings this brand of parent tends to experience throughout the various stages of parenting; from when we first imagine ourselves as parents, to when our children become adults. Together, these commonalities paint a fascinating portrait; an archetype, really, of Everyparent of an Easy to Love but… child; or Eve for short. In this series of posts, I’ll take you through Eve’s parenting experience, from her son Eli’s infancy, through his young adulthood.

Stage: Infancy

“The experience of parenting this child is nothing like I thought it would be.”

Here’s an excerpt from the Introduction to the book, Easy to Love but Hard to Raise.

“Like so many girls and young women, Eve has a fantasy of parenthood, formed during childhood play, and reinforced through years of romantic musings. Finally, it’s her turn to live the fantasy. Her son Eli is born (or adopted). Eve’s a mother!

Before long Eve is confused. Although she loves him, the experience of parenting this child is nothing like she thought it would be. Eli’s differences begin at birth. He’s colicky, impossible to console, overly sensitive to light and sound, and even to his parents’ touch. It seems as if he never sleeps. Eve thinks she must be doing something wrong, or her baby wouldn’t be so unhappy. She is always physically and emotionally exhausted. She privately mourns the loss of her long-held fantasy-motherhood.”

Many of our parent-authors described their ETL child’s infancy in just this way. Over and over they were told by their pediatricians that their babies were just “colicky.” Often, this was the first of many times that their parenting instincts (that something real and serious was going on) were discounted, causing them to begin to question their parenting abilities. In reality, it is likely that these babies, who were later discovered to have mental health conditions, were suffering from Sensory Processing Disorder, a condition that is commonly comorbid with ADHD and disorders on the autism spectrum.

Dr. Lucy Jane Miller, a top expert in Sensory Processing Disorder, founder and director of the STAR (Sensory Therapies And Research) Center, generously shared her knowledge for the book, saying, “If only I could get funding for a ‘fussy baby’ clinic! What is colic? What is a ‘fussy baby’ or a ‘difficult child?’ I think these likely are children with Sensory Processing Disorder….We…see many infants and toddlers, and the children who come to us at later ages invariably have in their histories early indicators of difficulties with processing sensation.” Dr. Miller says data shows that 40% of children with ADHD also have sensory processing challenges.

Kirk Martin, founder of, also served as an expert for the book. Martin says, “Most kids [with SPD] are never diagnosed, and some don’t have a full-blown diagnosable case; nevertheless, they struggle with sensory issues that cause issues in the classroom and at home. 85% of children with AD/HD who came to our camps [Martin, a behavioral therapist, hosted camps for challenging kids in his home] were affected by sensory issues of one kind or another. And I believe that anxiety and sensory issues cause more distractions and disruptions in the classroom than any other issue.”

Of course, Eve (and the parents she represents) doesn’t know that her child may have sensory processing issues at that time. She has no way of knowing that she is beginning a long, hard, special needs parenting journey.

Stay tuned…in the next post in this ongoing series Eve struggles to parent a challenging toddler.  


In May 2011, I introduced Eve to attendees at the annual conference of the Minnesota Association for Children’s Mental Health through a poster presentation. As part of the presentation I listed 23 quotes from Eve, and for each quote, asked parent-attendees to put an M & M in a cup labeled either “Agree” or “Disagree” to indicate if the quote matched their special needs parenting experience.


27 of 27 parents indicated that they agreed with the quote:


“The experience of parenting this child is nothing like I thought it would be.”


Do you agree or disagree with the statement: “Parenting this child is nothing like I thought it would be.”? Share your story! 


Jun 02

You Say Tomato, I Say Tomatis…

Our occupational therapist (OT) recommended Therapeutic Listening Program or Tomatis Therapy for my seven-year old son who has Sensory Processing Disorder. The therapy sounds simple enough. My child is supposed to listen to each therapeutic CD for 30 minutes twice a day for two weeks, with at least three hours between each 30 minute session, then move on to the next CD. Our OT only said not to listen during screen time, but instead during an active period of play or art. I was a little skeptical because I didn’t understand how listening to some music could help him, and it required specially designed headphones that cost $150. You can’t get the effects by listening to the CD’s out loud on regular stereo speakers.

I love our occupational therapist. She’s a pragmatist. She said she didn’t know if the therapy actually worked, some clients with Attention Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorders, and Sensory Processing Disorder (SPD) said it did, others not, but she didn’t think it could hurt. As an exhausted parent of children with issues, I’m inclined to do almost any therapy (presuming we can afford it financially) if I think there will be any benefit at all. Can I forgive myself if I skip this one, never knowing if this is “the” therapy that will solve my child’s issue and change our lives forever? I wouldn’t say I’m addicted to trying new therapies, but rather it’s a compulsion based in undying hope (or denial). I’m also driven by the idea that if I exhaust occupational therapies, maybe we can avoid pharmaceutical ones.

The Therapeutic Listening literature says it’s supposed to influence the vestibular system’s “orienting, regulation and sensory modulation, spatial and time issues, core stability and motor planning (praxis), connection, engagement, and communication,” and included a list of thirty positive potential outcomes. How could I say no?

It supposedly does this by stimulating several cranial nerves (at least V, VII, VIII, and X) through their shared connections with the auditory system in the middle ear. Stimulating these nerves in a specific way supposedly helps them do their jobs better, which includes filtering out all of the unimportant messages they receive all day long.

The system is explained in more detail in the book Listening with the Whole Body by Sheila Frick and Colleen Hacker. I also found this CNN news clip with a simple graphic. I should note that I didn’t have to buy the music CD’s as mentioned in the video, only the headphones. Our occupational therapist checks the CDs out like a library so I’m thankful that this is not costing us the small mint mentioned in the video.

We’ve been using the system imperfectly, missing a session or day here or there. I think it’s too soon to know if he’s benefiting from it. But my son actually likes the music and feels special that he has his own set of headphones and CD player so this therapy has not been as hard to implement as others we’ve tried.

Have you tried this therapy? How did it help (or not help) your family? I appreciate your thoughtful input and experience, and so do the other tired, hard-working parents who lurk here.

Lorraine Wilde is a freelance journalist, environmental scientist, and mother. Her work has appeared in Entertainment News NW, Ithaca Child, and on the parenting web site She is writing her memoir, and also blogs at My Wilde World.

Apr 28

Food Is Not a Four-Letter Word

My son has Sensory Processing Disorder (also known as Sensory Integration Dysfunction). One aspect of the vast range of symptoms of the disorder is that he is a very picky eater. He doesn’t want to try new foods, he doesn’t like his foods mixed together (which means he can’t appreciate my casseroles, soups, and salads), and he doesn’t even want to eat a food that has touched another on his plate. I knew he was sensitive to the textures and smells of foods because of his oral and olfactory sensitivities. But it took some research to figure out that there is much more to it than just that.

He’s thinner than I’d like, especially after a growth spurt, but we’re thankful that so far this problem hasn’t restricted his growth or health. Mostly, it’s just very annoying to me as a parent. I work hard to cook a healthy, tasty meal for the family, and pat myself on the back for not buying fast food or overly processed/frozen items, but it seems his first response is always, “Mom, this is yucky. Can I have a PB&J?” It’s hard to shake the feelings of under appreciation and worry about his health and remember that it’s really about his neurological disorder.

Over the years, we’ve tried to choose our battles, and until lately food hasn’t been one of them. I’d always tried to convince myself that when he was hungry, he would eat, and as long as I was giving him a quality daily multivitamin and healthy food choices, he’d be just fine. That’s still theoretically true for my son now, but for many children with more severe aversions, those labeled Resistant Eaters, this issue can present serious health concerns. It is not uncommon that children diagnosed with other disorders including Autism, Asperger’s Syndrome, and Pervasive Developmental Disorders would also be Resistant Eaters. Continue reading