May 16

Repost: Food is not a four-letter word. Help for picky eaters!

picky_eaterMy 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

Nov 14

Wiggle seat giveaway!

Picture is from Amazon. Giveaway discs are blue and green, pre-owned (but barely used).

A million years ago (actually, 2 1/2) when J was in school I bought him these wiggle seat discs to use in school to try to help him stay seated. For kids with sensory issues or fidget or movement needs, seats like this can help give kids the proprioceptive input they crave.

They helped him, kind of. They also served as something to throw, something the teacher had to confiscate, and something to poke his pencil into when he was bored.

In other words, they didn’t work for HIM, but they may work for YOU!

Given our failure and my desire to get rid of stuff we don’t need (not to mention stuff that can be used as a giant, puffy frisbee) I am giving away 2 Isokinetics 14″ balance exercise discs with the textured surface. One is blue and one is green and YES they are used, but barely. I got rid of the one he popped with a pencil, and the other 2 have been sitting my my attic for the last 2 years.

Here’s how you win:

  1. Join our forum: http://www.easytolovebut.com/mybb/
  2. Post your introduction.
  3. Come back here and post your username.
  4. Done! Winners will be chosen at the end of the month.
May 14

A Not-So-Perfect Summer Redux

Today I’m reposting a blog I shared here almost exactly a year ago. Only a little has changed since then, for better or worse, mostly that I had knee surgery and have been recovering nicely. But I’m also much less worried about how the summer will go and how my boys will handle moving into the next grade in the fall. Entering into summer and full-time parenting with more confidence and fewer worries, who could ask for anything more? But now it’s time to come up with my focus goals for each child. Wish me luck!

My blog post from May 12, 2011:

I can’t believe it’s mid-May already. In a little over a month, my twin seven-year old boys will be done with their public school first grade experience, including the support we receive through their Individual Education Plans (IEP’s). I have to admit I’m a little nervous. They’ve been in school for six hours per day, five days per week, and now I’m out of practice at entertaining them and caring for them for so many hours in a week.

Have you been diagnosed (or self-diagnosed) as a perfectionist? I have to admit that I suffer from this debilitating ailment. Last year at this time I had already designed a written plan of weekly summer enrichment activities that were meant to maintain, if not advance, my boy’s academic and behavioral success. Am I a trained paraeducator? No, just a mom on a mission.

My plan last summer was ambitious. I knew I wouldn’t accomplish everything in the plan, but for me, just striving toward the perfection was enough. I was and still am proud of the plan, which included a special activity for every day of the week. Mondays were science field trips (to forests, arboretums, and streams), Tuesdays were arts and crafts projects, Wednesday was Adventure day (hikes and bike trips), Thursday was public library day, and Friday’s held park play dates (to help my boys continue to build their social skills and communication).

I also chose two or three major goals for each child to achieve by the end of the summer. Choosing a small number, I reasoned, would help me focus on what was really important when I was feeling lazy (as if!), or overwhelmed by all the choices of what to do (a regular problem).

Last year, I chose as major goals:

  • riding their bikes without training wheels,
  • learning to swim well (so I didn’t worry so much about them), and
  • learning to tie their own shoes (selfishly because I was tiring of the task).

My fellow mom friends chuckled and rolled their eyes at my ambitious plans, but they were also inspired to come up with their own, probably more realistic, summer plan for their kids.

I have to admit that last summer, not even for one week, did I actually accomplish all that I’d planned for the boys. But most weeks we accomplished at least three out of the five days. For that, I was proud of myself and of my boys flexibility, willingness, and energy. It wasn’t perfect, but I kept focusing on what I was doing right, instead of what I failed to accomplish.

Of course I have no empirical proof (I am a scientist after all), but I do believe that our efforts prepared the boys for their transition into first grade, and certainly influenced the leaps both boys made during this school year.

My greatest joy of last fall was when the special education coordinator said, “It seems like the boys didn’t lose what they learned in kindergarten over the summer. Great job, mom.” She has no idea how much her praise and reassurance meant to me.

This summer will be quite different and I’m a little scared. Granted, the boys are now a year older and they’ll have a greater level of independence (yeah for me). But I won’t be able to provide them with the same level of attention and determination as last summer. This year I have my own disability to deal with (thankfully temporary). I tore several ligaments in my knee and broke my tibia just jumping in the air at a rec. volleyball game. Well, it wasn’t the jumping, but the landing that did me in. I’ve been on crutches for over seven weeks, and unable to cook, clean, (frankly not missing it) or do much else but yell crazily across the house while swinging a crutch in the air. Although I started walking again this week, our future is uncertain. I must decide when to have surgery to repair my meniscus and ACL and I must actually work at healing my injury, like a part-time job through physical therapy.

Last year I could put the boy’s needs ahead of my own almost every hour of every day if needed. I was shooting for “the perfect parent.” But this summer, I’ll be far from perfect. I’ll have to say no a lot more often to elaborate crafts and science experiments, there will be fewer grand outings, and this summer, my boys will learn the hard but valuable lesson about putting someone else’s needs before their own.

As an empress of worry, I enter this summer with the fear that my injury will hinder my boys behavioral, emotional, and academic progress. I’m concerned that heading back to second grade in the fall will be tougher for them without all the prep I’d planned.

My plan for this summer will surely not be anywhere near the perfection we glimpsed last year. Instead, it will be a grand exercise for us all in compromise and learning to accept “good enough.”

This experience has taught me many lessons, a few of which I’ve listed below.

I’ve learned to:

  • be more patient,
  • gracefully say no to opportunities that aren’t an “absolute yes”,
  • accept and appreciate help from others,
  • accept that I will never be perfect (still working on this one) J,
  • set my standards at a more realistic level, and not beat myself up when I “fail”,
  • appreciate my husband for the super-dad that he is, even when he doesn’t do it my way,
  • encourage my children’s independence,
  • worry less about reaching (or not) specific milestones, and
  • focus more on spending memorable time together.

I’m sure that this summer, together, we will all learn many more life lessons.

How have you learned to muffle (or strangle) your inner perfectionist? What is your “good enough” summer enrichment plan for your special needs child? And please send me an e-mail if you’ve got any advice on how to recover from a knee injury. :)

Thank you for reading and sharing your stories with this group of caring, supportive parents.

May 04

Helping Each Other

I love this blog, our Facebook page, and the book, Easy to Love But Hard to Raise because they all focus on connecting and supporting parents of children with invisible disabilities, mental illnesses, and brain-based special needs. Together, we are stronger, wiser, and hopefully a little more satisfied with this defining life experience of parenting kids who need more.

When my twin boys were first being diagnosed as toddlers a few years ago, I discovered my county support network, Parent to Parent of Whatcom County (P2P). Their free services include the emotional support of a trained Helping Parent whose parenting experiences match mine as closely as possible. They also offer hosted social and recreational events, current information on disabilities and medical conditions, and referrals to community resources.

The first essay I wrote about life as an ETL parent eventually appeared in my local P2P newsletter. A couple of years later, a different form of that essay now appears in our beloved Easy to Love But Hard to Raise. I feel as if my experience with P2P is coming full circle. Later this month, I will host a reading and support meeting for the group, the book is being considered for a new Parent Support Book Club they’re developing, and I’m considering becoming a Helping Parent myself.

A couple of weeks ago, our family attended a free P2P-only ice skating event. My boys had been asking for months to go for their first try, but I’d been avoiding it. I didn’t want to deal with public meltdowns and crowds of people that don’t understand us. But with P2P, our experience went far better than I expected, the kids had a positive first experience, and we were surrounded by people who “get it.”

Barbara Claypole White has blogged here before about whether or not to join a support group, and in the end, it’s a personal decision that has to work for you, in your circumstances, in your own life. For my family, P2P has been exactly what we needed. Barbara said it well when she wrote, “Finding the right group—or stumbling into it in my case—is a blessing. We may cry in the middle of sessions, but by the end we’re laughing. And if you can laugh at least once during a day of parenting an obsessive-compulsive child, you’re a momma who can keep on truckin’.”

If you need the support of others near your community, Parent to Parent USA has local chapters throughout the country that just might be a good fit. Check ‘em out, and please, keep on truckin’.

Apr 04

Someone Has Some Explaining To Do

Another parent-teacher conference has come and gone and this year, I find myself a changed woman. You see, in years past, I have always seen conference time as an opportunity to advocate for my children. It’s been my time to check in to make sure their teachers understand what makes them tick. I’ve enthusiastically shared tips for reading the body language of anxiety, patiently tried to explain how OCD can look like ADD, and pleaded for an email at the first sign of any behavior changes (which for my kids can mean a PANDAS relapse is on the horizon). Over four years, my audience has sometimes indulged me and sometimes even been genuinely interested in learning and sharing. Sometimes, I’ve been met by that polite yet pained smile that tells me I’ve just been labeled “the neurotic mom who clearly needs a valium.”

 This year, spring conference found me jaded. Whether it’s me who’s changed or just an unfortunate failure to connect, I haven’t been able to click with my kids’ teachers. Instead of wanting to use my fifteen minutes to foster understanding, I just followed the typical script, heard how my kids were making progress and made a timely exit.

Where did that naïve, driven, committed mother go? Could my passion for wanting to change hearts and minds really dry up in only four short years? Or am I just past the point of having the energy to re-explain everything year after year? When I first learned about OCD, I was eager to share what I knew. Now, after so many failures to reach my audience, when I hear “Gee, he doesn’t seem to wash his hands any more than the other kids. I really don’t see any OCD,” I should realize that this isn’t said to be hurtful. It’s a sign that OCD remains poorly understood and that teachers aren’t being given the training that could help. But in that moment, after being on the receiving end of so many similar comments, I just want to stand on top of the desk and shout “You ninny – not everyone with OCD washes their hands!” How I wish I could find a way to explain that long goodbyes in the school lobby do not make me a helicopter mom but instead allow my child to slowly disengage at her own pace; give her the power to start the day with a small sense of control instead of having the noise and chaos of a bus trip overwhelm her before she’s even set foot in the building. I guess I’m not losing my passion so much as I’m getting discouraged. Continue reading

Apr 03

Understanding Bloomers

A recent article by Linda Carroll, Outgrowing Autism? Study Looks at Why Some Kids “Bloom” highlights a new Pediatrics study of 6,795 California children showing that “about 10 percent of children who are severely affected by autism at age three seem to have ‘bloomed’ by age eight, leaving behind many of the condition’s crippling deficits.”

This article got my attention because my own twins, although never diagnosed with autism spectrum disorder, showed symptoms associated with Asperger’s by age 18 months but now, having just celebrated their eighth birthday, those symptoms seem like a distant bad dream we’d all like to forget.

Could I be the proud mother of a couple of bloomers?

Carroll’s article goes on to explain that when researchers looked at the characteristics of the bloomer’s families they found a few commonalities: bloomers tended not to have intellectual disabilities and their parents had more education and financial means to get early, intensive therapy. Mothers (fathers weren’t studied) had at least a high school education and came from a “higher socio-economic class.”

The anthology Easy to Love But Hard to Raise is full of parent’s stories, including my own, that share our ambitious, creative, and persistent search for solutions to our children’s behaviors and disorders, alongside the myriad of feelings that came with their diagnoses.

Parents who have been through it might question the use of the term “grown out of it” because it implies that the child might have shed their diagnosis simply with the passage of time. This article from February that studied 1,366 parents of autistic children suggests that 33 percent of children may downgrade their diagnosis to Asperger’s or shed their autism diagnosis altogether by age seven, but not without intensive parental support. Other previous studies have suggested that number lies between 3 and 25 percent. Parents of ETL kids understand that our children have improved because of our early, tenacious efforts and the help of teachers and professionals.

Another article published in Pediatrics in January supports the finding that children that “grow out” of autism tend not to have other physical and psychological diagnoses. Children with a hearing impairment were the most likely to shed the autism diagnosis because once their issues were addressed, the other autism-like symptoms resolved. This fact sheds light on the potential for misdiagnosis, which certainly exists when trying to diagnose children of preschool age and younger.

Can the study of autistic bloomers be extrapolated to children with other disorders? The answer seems to be the dreaded “it depends.” Psychologist Dr. Ari Tuckman’s video blog for ADDitude Magazine suggests that some children with Attention Deficit Hyperactivity Disorder (ADD/ADHD) improve because they learn to better manage their symptoms and their brains continue to develop and “tighten up” into their early 20’s. However, the majority of those with anxiety disorders report that severity can increase with age, although medication and cognitive behavioral therapy can help.

And what’s so magical about age seven or eight, the age by which these children are “growing out of” autism? Age seven is the beginning of a brain development phase termed The Period of Concrete Operations, a milestone of sorts, which lasts until around age twelve, where logic, organization, and problem-solving expand and egocentricity declines. Could more children be helped if diagnosed earlier? It’s too soon to tell but most studies suggest that the earlier the intervention, the greater potential for results. Fortunately, the average age of autism diagnosis has gradually come down to age four, but also means that many children are still diagnosed much later.

To help our eight-year-old twin boys, we sought the advice of physicians, naturopathic doctors, occupational therapists, ophthalmologists, and speech and language pathologists, while reading every relevant library book and web site under the sun, investing a small fortune, and spending the equivalent of a part-time job focused on their improvement. Many of my blog posts here have focused on the therapies we’ve tried. My husband and I do have more than a high school education and although we wouldn’t consider ourselves of “higher socio-economic class” we are frugal, resourceful, and willing to learn and faithfully execute the therapies we can do at home, avoiding expensive appointments when possible.

We definitely believe that our boy’s significant improvement over the past four years is due to the incredible, early support, education, and advice we’ve received from teachers, professionals, and fellow struggling parents, and for that, we are eternally indebted.

Although focusing on the 3 to 33 percent that are bloomers may leave some parents whose children are over age eight, suffering from multiple diagnoses, or lacking access to resources feeling hopeless, it’s my firm belief that clearly understanding what enables bloomers to thrive could eventually increase the number of children abandoning a diagnosis in the near future.

Animation courtesy of Gifbin.

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 22

Letting Go of Normal

Many times while writing for this blog, I’ve shared my worries, my sadness, my frazzled feelings as a mother of twins who need more. Some parents seem to have so much figured out while I feel like I’ve been floundering, searching, hoping for six years that I’d find the magic solution to fix it all. I hoped that if I just kept looking and worked hard enough, we might eventually attain a “normal” life. Hearing others say, “Hang in there, it will all work out,” was encouraging but it didn’t bring me the peace of mind I was seeking.

My boy’s improvement has become my obsession. Some days I feel like I make no headway, crossing one thing off the list and adding two more. Even when their teachers praise how far they’ve come, I keep going back to my list of things undone thinking, “but we’re not there yet.” But lately I’m coming to realize there is no “there” to get to.

Last week I began reading When Things Fall Apart by Pema Chödrön. At first, I wasn’t reading it with my boys in mind, and yet, the pages seem full of advice for parents who are struggling—struggling to cope, struggling to accept, struggling to see the light in their child that gets overshadowed by exhausting undesirable behavior.

Chödrön says,

“…abandoning hope is an affirmation, the beginning of the beginning. You could even put ‘Abandon hope’ on your refrigerator door instead of more conventional aspirations like ‘Every day in every way I’m getting better and better’….We hold on to hope, and hope robs us of the present moment. We feel that someone else knows what’s going on, but that there’s something missing in us, and therefore something is lacking in our world.”

Today I put a note on my fridge that says ‘Abandon Hope.’ Of course, that doesn’t mean we’ll cancel therapies or wallow in despair. Instead, it will remind me to transition out of my obsession with what we are not, and to appreciate right now, even when it’s pushing me to the edge.

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 auburnpub.com, 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.