Category Archives: sensory integration dysfunction

Are You an Alphabet Soup Mom? Getting Beyond Labels

Just the other day, I was trying to explain to someone that we parents of special needs kids are, more often than not, dealing with an alphabet soup of diagnoses. It starts with one set of letters, disconnected from your actual child: EI (early intervention), OT (the occupational therapist who evaluates him as part of his EI evaluation)—or perhaps PT (physical therapist), or SLP (speech language pathologist). Then you get your IFSP which will later turn into an IEP and your alphabet diagnoses: SPD, ADHD, PDD-NOS, maybe FAS, RAD, ODD, OCD,  perhaps the CCC and the WPA and…oops, those are the New Deal programs of president FDR!

 

I think one of the hardest things in the beginning is to accept is that your child’s loveable quirks are now being pathologized: treated as problems, or symptoms of disorders, disabilities, and dysfunctions, and reduced to labels. Why is it a problem that my son doesn’t hold a crayon well at 27 months? He doesn’t like coloring. So what? Why are you grilling me about how he responds to being toweled off after a shower? So he hugs me hard. He’s a sweet and affectionate toddler! “Well, we think he has SID.”

 

And so, the stack of  soup labels begins to accumulate. For us, there were a lot of actual words rather than letters: One was apraxia, also known as dyspraxia, oral apraxia, verbal dyspraxia, global dyspraxia—it’s important to have as many terms as possible to make mom and dad’s eyes glaze over and keep them doing internet searches til the wee hours—damn it, what keyword will get me to the information I need?!! We also got SPD, which at the time was SID or DSI or maybe SI dysfunction, not to be confused with Semantic Pragmatic Disorder or Semantic Pragmatic Language Disorder which is sort of like autism in that it involves language pragmatics…. I never did quite understand that but I think it didn’t apply even though the SLP said there were pragmatics issues. .. . And of course, it was SID, not SIDS, which is Sudden Infant Death Syndrome.

 

Pass the Ibuprofen.

 

OK, so what else was on the IFSP (individualized family service plan) that would turn into an IEP when he aged out of EI (grew too old for the early intervention program and got an individualized education plan through the school district)? Fine motor delay—they picked that up. Receptive and expressive language processing disorders. Wait—were those disorders, or delays? I wrestled with that one for a long time and finally concluded that apraxia can’t fairly be called a delay. When a later talker finally can string a sentence together and points to his leg and says, “This is my blood song,” I’ll change my mind (translation: “blood stream.” Even at 4, my son was fascinated by the inner workings of the body, and with his word retrieval issues, “stream” became “song”). When does a delay become a disability, and when does a disability become a difference society needs to accept and stop trying to fix?

 

Once you get your cluster of labels, you find they change, or no longer fit. Fun, fun, fun! And then, when your little one begins school, you have to figure out what little boxes to check on the IEP to cover all your child’s issues. Speech Impaired—okay, that works for a language disability. But where does SPD get acknowledged? OHI. Other health impaired. Welcome to the school’s own alphabet soup!

 

It’s so hard when you think you have a handle on “what’s wrong with my child” then you get another soup label pasted onto him and his ever-thickening file, but it’s part of being a special needs parent. You have to remember that underneath it all, your kid is a unique person with his own set of qualities, and aspects of himself that can delight you one day and drive you crazy the next. You need the labels to get services, and you hope that people don’t scoff at your labels and your outsider’s evaluations and secretly think, “Yeah, I’ll tell you what’s really wrong with that kid. A lack of discipline!” Ah yes, the old “bad child, bad parent” diagnosis. This is not a medical or school diagnosis, or a functional diagnosis that a therapist issues. Apparently, any stranger on the street is qualified to issue this diagnosis, and the larger the crowd of onlookers, and the more stressed out you and your child are, the more likely it is that you’ll receive the “bad child, bad parent” diagnosis from some passerby.

 

Labels lead to services at school, and more labels such as OHI. Despite the alphabet soup, kids are still kids.

The upside to all of this craziness is we special needs moms just plain old “get” each other, don’t we? We’ve been there, done that. IEP meeting today? I don’t have to know your child’s diagnosis. I know you’re going to need some emotional support and a pep talk from the rest of us today! Did someone really say to you, “Are you sure it’s not just…behavioral?” I share your primal scream!

 

Being a mom of a kid with labels has another upside. It’s made me become more educated and more curious about other disabilities which helps me to help others. Sometimes, I can’t believe how much I know about autism for someone whose child doesn’t have autism. For years, I’ve been fascinated by the overlap between his symptoms and the symptoms of kids with Asperger’s. Let’s talk about the vacuuming thing… I get that. And the puzzle thing, and the Thomas the Tank Engine thing! And the concrete language thing, the repeating of lines from movies…yep, yep, yep.  Let’s talk giftedness and 2E.  I learn SO much by osmosis when chatting with the SPD moms whose kids are also on the spectrum. Lately, I’ve been learning more about FAS and RAD from another mom, and know that someday I’ll be passing along some ideas and insights to a mom who is dealing with ADHD and bipolar disorder but thinking maybe there there’s RAD going on.

 

Some call us warrior moms but I don’t always feel like fighting, or it seems counterproductive Sometimes, my greatest strength is in being creative, or doing research, or observing, or just forgetting it all and enjoying my child. Maybe we’re the alphabet soup parents, enjoying the richness of our experience, noticing how all the conditions blend together in the bowl but sometimes catch your eye when you dig a spoon in and focus on one or two.

 

How about you? Are you an alphabet soup mom? Have you ever passed along information about a disorder your child doesn’t have but you’ve learned about from another alphabet soup parent?

Advertisements

16 Comments

Filed under diagnoses, IEP, labels, OT, prognosis for kids with SPD, sensory integration dysfunction, sensory processing disorder, sensory processing disorder diagnosis, sensory processing disorder symptoms

Brain Differences Are Real! How YOU Can Retrain the Brain of Your Child Who Has Sensory Issues

The brains of people with ADHD, autism, and/or sensory processing disorder are different from the brains of neurotypical people. There’s reams of evidence this is true, including a new report on visual processing differences and ADHD. Whenever I hear people say ADHD or sensory issues aren’t real, or that some kids don’t have autism and are just the victims of bad parenting, I wish I had a portable brain scanner to whip out to show people WE ARE NOT MAKING THIS STUFF UP! (Forgive my crankiness–I hear so many of your stories about ignorant people who are convinced it’s all nonsense and I share your frustration!)

For those of you who have already accepted this fundamental reality about different brains, please remember that brains are retrainable, or plastic so there is reason to be optimistic, although it may not feel that way on your worst days. How does brain retraining work? As the saying goes, “When neurons fire, they rewire.” That means that when a neuron is stimulated and sends out an electrical signal to another neuron, a bridge between them forms. When the stimulus is repeated, the bridge is strengthened. In time, that bridge becomes very strong. That’s why we see that after a sensory smart OT does the same activity, hand over hand, with our child again and again, one day, he just “gets it” and doesn’t need cueing or demonstrating anymore. In fact, the stronger the neural network of bridges, the easier it is for him to translate the original skill to a new activity. He can blow a bubble off of a bubble wand  AND blow out a birthday cake candle.

Kids with sensory issues may need lots of practice to acquire skills such as bubble blowing. Have your sensory smart OT assign you homework--activities you can practice with your child, as part of a sensory diet, to retrain her brain.

Retraining the brain is easiest with babies, toddlers, and preschoolers, but we can retrain the brain at any age as long as any damage to the brain is not too severe. Even then, our brains are marvelous at rerouting signals so that we can make do with what we have.

What this means for us as parents is that we help our children develop more typical sensory processing, better self-regulation, and new skills through repetition and practice. Talk to your OT regularly about what she is doing with your child to build new neural networks and follow through with “homework.” My son’s marvelous sensory smart OT, Lindsey Biel, showed me how to stand over him, cueing him to keep his legs together using my own legs, and count off to jumping over three stuffed animals lain on the floor, in sequence. “1-2-3 jump–legs together! 1-2-3 jump–legs together, that’s right!” Every week, we had homework to do. It was fun and easy to work into our home routine (especially because Lindsey is a huge advocate of sensory diet activities that combine with everyday life easily). I learned that this follow through was as important as a musician practicing between lessons. Just a few minutes of each activity a few times a day helped tremendously. In fact, my son had so much fun he would often try activities on his own, or point to the equipment (it helped that he is a sensory seeker so jumping and the like always held great appeal–I know you parents of sensory avoiders have it a bit harder!).

If you haven’t done OT homework at all, or in a while, make a plan for yourself to learn what to do with your child and work on it every day, even if only for a few minutes. You can do it, and it’s fun!

Leave a comment

Filed under A.D.D. and A.D.H.D., helping your child with SPD at home, Lindsey Biel, occupational therapy, organizational issues, OT, Practical tips for sensory issues, sensory diet, sensory integration dysfunction, sensory processing disorder

Helping Children in China and the U.S. Who Suffered Lead Poisoning

There’s a heartbreaking article in today’s New York Times about children in China who have lead poisoning due to the lax standards of manufacturing in China. I recall when we first learned that brand-name American toys manufactured in China were painted with lead–yes, Barbie, Thomas the Tank Engine, and Matchbox!–I thought, our kids are playing with the toys, but what about the kids in China whose parents are making them and track the heavy metals into their homes, the kids who live near factories, or who breathe air contaminated by heavy metals?

Here in America, we know about lead in paint and now, in cheap toys and imports. I’ve been talking for years about lead in porcelain bathtubs that leach lead (you can test the glaze using a kit from the hardware store; I had my landlord replace my tub that was leaching lead). I know lead tests are painful for most kids (well, not to the hyposensitive child–my son actually enjoyed the sensation at first, one of the signs I had that something was “off” with this little guy!). Nevertheless, we MUST be careful to monitor our children and avoid exposing them to lead.

One small consolation: There are few foreign publishers who buy books on special needs parenting (if you know of any, please do contact me!), but there was a publisher in China who bought the rights to Raising a Sensory Smart Child.  (we also sold Croatian rights). I want to believe that the book will get into the hands of these parents so they can learn about lead poisoning (yes, that is covered, along with mercury poisoning) and what to do for their kids who develop sensory processing issues as a result of lead poisoning. Still, how heartbreaking to read of this very preventable problem!

Leave a comment

Filed under heavy metals, lead poisoning, sensory integration dysfunction, sensory processing disorder

Sensory Processing Disorder and the Seven (yes, 7!) Senses, a New Video

Here’s a video I made about the seven senses. Yes, there are 7, not 5–they include the ones you learned about in school plus two that are unfamiliar to may people, namely, the vestibular sense (sense of music) and proprioceptive sense (sense of body awareness). I tried to provide some images of various types of sensory input, and explain a bit about the aspects of our more familiar senses that we don’t think about. For instance, when you think of the tactile sense, or sense of touch, do you think about the texture of gritty versus smooth or slimy? Do you think about how you can discriminate between hot and cold? Or that the skin inside your mouth has tactile sensory receptors, too, so that you can have oral sensitivities, or engage in oral sensory seeking?

 

Enjoy the video!

 

1 Comment

Filed under auditory processing disorders, proprioceptive input, sensory integration dysfunction, sensory processing disorder, sensory processing disorder symptoms, sensory processing disorder video, sensory seeking, seven senses, SPD and auditory, tactile sense, vestibular input, visual processing

Oprah: Sensory Processing Disorder Needs to Be On the Oprah Show!

Please join the campaign the SPD Foundation has begun to urge Oprah in this, her last season, to devote a show to sensory processing disorder, a condition that affects 1 in 10 children: HOW TO WRITE TO OPRAH.

 

Her recent show on a boy with multiple issues including SPD probably left many with some false impressions about sensory processing disorder which I’d like to clear up here:

 

SPD is not treatable with medications. There are NO pharmaceutical drugs that treat sensory issues. The gold standard of treatment for SPD is occupational therapy by a sensory smart occupational therapist combined with home follow through. Adjunct therapies can help reduce anxiety and stress that go along with SPD.

 

SPD causes anxiety and stress responses such as anger but kids with SPD are not necessarily violent toward others. Abnormal sensory processing can cause a child to go into a fight-or-flight panic response to everyday sensations that the rest of us take for granted. Quite often, they go into “flight” and become anxious or withdrawn. Other times, they go into “fight” and fearfully lash out in order to protect themselves from the danger they perceive. They may actually harm themselves when in a “fight” condition. At the same time, what LOOKS like violence may simply be sensory seeking. We’ve seen our kids hit objects or people thinking they’re simply starting a gentle game of tag, or bite or lick a person or object to alleviate their oral sensory needs–no anger involved.

 

Sensory Processing Disorder can appear with other conditions or on its own. It’s very common to have SPD and ADHD, or SPD and autism, or sensory processing issues and developmental delays or learning disabilities. A child may have sensory processing disorder and food intolerances, or mental illnesses, or emotional maturity…the list goes on. However, a person can have sensory processing disorder and no other diagnosed conditions.

 

Please help us educate the masses about sensory processing disorder. It only takes a few minutes to write to Oprah and her producers and request a show devoted to sensory issues!

 

Leave a comment

Filed under sensory integration dysfunction, sensory processing disorder, sensory processing disorder diagnosis, sensory processing disorder in the news, sensory processing disorder symptoms

What’s up with this child? Listen to your instincts!

Please share this promotional video with anyone you think might benefit from it. It was inspired by all those well-meaning comments we parents heard, and by the courage of parents who said, “No, I think there’s something ‘off’ with my child and I’m going to explore that possibility.”

 

http://www.youtube.com/watch?v=wG4O2TV2smg

 

Leave a comment

Filed under auditory processing disorders, clothing issues, grooming, haircuts, sensory integration dysfunction, sensory processing disorder, sensory processing disorder diagnosis, sensory processing disorder symptoms, sensory seeking, SensorySmartParent.com, SPD and auditory

60 first graders, 4 teachers, one open classroom = Sensory Hell

Do I laugh or cry at the misguided professionals who borrowed an idea from an elite private prep school to create a overpopulated first-grade classroom  for public school children, a group that includes kids with sensory processing issues?  According to the New York Times article, the class is held in an open area with 60 first graders and 4 teachers who can all hear and see what’s going on with the other groups. Transitions that involve a change of activity and moving the children to a different part of the room are a nightmare, which is frustrating for the teaching team.

Up to ten percent of children have sensory processing differences that make everyday sensations such as background noise or visual clutter incredibly intense experiences that are difficult for the brain to process, distracting, and anxiety provoking. Although we can be grateful our own kids aren’t in the sensory hell of 60 kids, 4 teachers, no walls, this story is a good reminder of how important it is to be aware of how sensory kids experience auditory and visual clutter.

Neurotypical people and children have the ability to automatically “turn down the volume” on sensory input that isn’t important and “turn up the volume” (that is, pay attention to) priority sensory input. Neurotypical children can usually tune out the sound of a truck rolling by a classroom, a dog barking outside, a chair scraping as someone pulls it out, or the squeak of a marker on a whiteboard isn’t important noise–unless they’re bored or antsy because they’re hungry or tired of sitting. However, most of the time they probably won’t notice the sound or, if they do, they automatically know it’s unimportant and they don’t instantly break their focus. Of course, younger children do get distracted by sounds they find especially interesting–the sound of money jangling in a bag, described in the article, would probably excite a six-year-old eager to see how much money it is. The sound of a dog barking outside a classroom door might elicit excitement (“Ooo, there’s a doggie in the building? Can I see him? Can I pet him?) or anxiety (“Oh no, a dog. I’m scared! My aunt’s dog bit me once!”).

Imagine, though, that your brain simply can’t block out the sound of children’s feet as they move across the room, or the teacher talking to a different class. Imagine that your brain is taking in the sight of 60 kids all moving, some of them moving suddenly, or bursting into giggles that pierce your ears because of your auditory sensitivities. Your brain can’t process all this information quickly enough and some of it is being processed as danger signals. Sudden high-pitched sound? Sudden movement to your right? Your body responds with panic: the fight or flight response. You start chewing your fingertips and rocking, shutting down and not hearing the teacher’s instructions. You feel yourself getting agitated, and when another child moves too close to you, you take a swing at her. You feel yourself so excited by all the stimulation that you start hand flapping and making silly noises–which the other kids laugh at, which makes you more excited, so you start bopping your head side to side and rolling on the ground. Fight, flight, sensory overload–these are not responses that will help you learn in this environment. And if you have poor self-regulation, which many sensory kids have much longer than neurotypical children do, you’re not going to come back to a calm and alert state simply because the teacher says, “Tommy, calm down now.”

Does this sound familiar? Are you seeing these behaviors and situations in a classroom of just 20-25 kids? If there’s a child with SPD in that classroom, and statistics tell us there is, the answer is “absolutely.”

So what’s a parent or teacher to do?

In general, kids with sensory issues function better in smaller classrooms because of the lower amount of stimulation. Any time you can reduce sensory stimulation and sudden transitions, it will be easier for all children, but especially those with sensory processing differences, to focus and remain calm and alert. Many parents have found that having their child with SPD in a private school classroom with 8 children is more supportive of him than a public school classroom with 30 children, but then there’s the issue of can you get special educational services (such as OT for sensory issues) paid for by the school district if your child is in private school? It’s very difficult.

Small private school classroom but no services, large public school classroom but services, including in-class services? It’s a tough call for many parents. Whatever choices you have before you, do check out the information on my website, SensorySmartParent.com, about helping your child at school (start HERE) and the chapter on Advocating for Your Child at School in Raising a Sensory Smart Child. There are MANY ways to make classrooms more user friendly for children with sensory processing issues, and many of the accommodations are simple, low cost, or no cost. You can begin to set up a sensory diet for your child today (hopefully, with the help of a sensory smart OT). No child should be put in “sensory hell.”

1 Comment

Filed under anxiety, auditory processing disorders, autism and sensory issues, back to school for sensory kids, books on SPD, boys in school, schools, sensory diet at school, sensory integration dysfunction, sensory processing disorder, sensory processing disorder symptoms, sensory seeking, SPD and auditory, special education