Category Archives: sensory processing disorder symptoms

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?

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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

Writing Without Handwriting: Tips for Kids with Sensory Issues Who Resist Writing

 My most recent edition of the Sensory Smart News garnered more positive feedback than any newsletter I’ve written since the Sensory Smart News began (if you haven’t subscribed yet to this monthly newsletter of practical tips for parents, teachers, caretakers, and professionals who want to help sensory kids, you can do so at www.sensorysmartnews.com) Until I get a chance to put it up on my website, www.sensorysmartparent.com I thought I’d reprint it here.

The Sensory Smart Tip: Recognize that handwriting and writing are two different skills, and focus on composing separately.

Developing handwriting skills, and handwriting at length, is often difficult for kids with sensory processing disorder. There are many issues involved in handwriting, including memory, language processing, posture, muscle tone, body awareness, tactile issues, and so on. If your child is having difficulty handwriting, get it evaluated by a sensory smart OT. Once you are able to identify which issues are at play, you and the OT can work on those with your child. I will do a future newsletter on the sensory piece of handwriting. For now, let’s look at the composing aspect of writing for school.

When you separate out composing from handwriting, it can greatly help a child who has uneven skills. There’s nothing more frustrating than knowing what you want to say and not being able to get it down on paper with a pencil, unless it’s not knowing what to say and having handwriting problems to boot! As a professional writer and editor, I am very much aware that too often, we mush together the many different elements of writing and editing, which can intimidate and confuse a novice writer. There’s really no reason for it. After all, in the olden days when I was a secretary, my bosses regularly composed their letters via dictation, and I used a Dictaphone or Gregg shorthand to record what they were saying. Bestselling romance novelist Barbara Cartland composed all her books by dictating them to a secretary.

Here are some tips to help your child with SPD approach the composing aspect of writing without becoming anxious and frustrated.

1. Use technology for composing. Provide, or have your child’s school provide, assistive technology such a keyboard, iPad, or dictation software such as Dragon Naturally Speaking (R). It takes time to train such software, and some kids may find it too frustrating to make connections, so you may want to try it before committing to using it.

2. Use old-fashioned dictation. Your child can dictate his book report to you or someone else while you type it. You can record it on your smart phone, a low tech tape recorder, or other technology, then play it back and type it out for her.

3. Have her write freely for a few minutes for practice. Have your child sit and write anything she wants, using handwriting or a keyboard. This will encourage self-expression. Praise her for the effort and don’t make corrections. Let her get used to the idea that she actually can compose her thoughts and “write.” If she’s stumped on a topic, provide a simple one, and reward her for writing anything on the subject. If she’s very anxious, start small, free writing for as little as one minute.

4. Encourage composing letters and messages that are short form. A child who composes emails to his cousins and scrawls funny little messages to mom and dad on the family blackboard will have an easier time approaching a larger writing task than a child who rarely practices expressing himself through writing.

5. Focus first on ideas and how they’re related to each other. Visual mapping using bubbles, or Inspiration software which allows you to do this easily on a computer, works well for some kids. Other kids need to talk them through with a parent or teacher before starting the process of writing.

6. Focus next on the organization of ideas and sentences. Kids with sensory issues often have a very hard time with organizing time, possessions, and their thoughts. They also may not realize that a report or letter should have a beginning, middle, and end, or that a sentence has certain elements that make it a complete sentence. Focus on these elements of composition before looking at the mechanics of spelling, punctuation, and capitalization. It will help your child better understand the craft of writing as composing and take away the pressure of having to remember all those visual pieces that are involved in writing on paper or on the screen (such as capital versus small letters).

7. When working with a computer, let her pick the font and its size. Crazy though it may sound, some kids with visual issues may have an easier time composing on a computer screen, using a keyboard, if they can choose a font that is appealing to them visually. You can always change it later before printing it. Your child with visual issues may need the type to be very small or very large, or find that the letters are easier for her to read in a font that you personally find too “out there.” Consider adjusting the computer screen too to reduce glare and provide more or less contrast. In our focus on handwriting and its sensory issues, we can forget there are sensory issues with computer screens and devices, too!

8. Teach your child that editing can come later. Most of us edit as we write to some degree but an anxious child can get too caught up in “getting it perfect” right away. Teach your child that even the greatest writers go through multiple drafts of what they write, and focusing on the ideas and how they’re expressed is the first step of editing. Yes, if she notices she forgot to capitalize the first letter in the beginning of a sentence, or misspelled a word, she can correct that, but that’s not what she should be looking for until she’s made certain the ideas are expressed the way she wants them to be. Reading the composition out loud can be extremely helpful.

Handwriting and writing (composing) are two separate skills. When they're mushed together, kids with sensory processing disorder, autism, ADHD, organizational issues, and language processing difficulties can become overwhelmed.

9. Work on spelling separately. You may notice your child’s spelling is better when handwriting is not involved because by not focusing on the handwriting element, he frees himself up to pay closer attention to his spelling. Experiment with having him dictate how to spell the words, or keyboard them. Have him go over spelling words by keyboarding them or spelling them aloud—perhaps while walking in a circle, spinning on an office chair or Dizzy Disc Jr.(r), or jumping on a mini trampoline. Some kids find that learning word roots is very helpful with spelling.

10. Keep the atmosophere positive as you break down the task. Whenever your child expresses anxiety about a large task, stay positive and break down the large task into smaller tasks. As they say, every great journey starts with one small step!

Two books that can help your child by providing writing prompts are 350 Fabulous Writing Prompts, for 4th through 8th graders, and 500 Writing Prompts for Kids: First Through Fifth Grade

My middle school age son has also been enjoying handwriting his thoughts in Diary of A Wimpy Kid Do It Yourself Book.

Just a reminder: If you place your Amazon.com order through the links on my site, such as by clicking on the jacket for Raising a Sensory Smart Child that appears on every page, I get a small commission that helps me fund hosting fees and my newsletter fees. Thanks!

 

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Help Your Sensory Child Get Ready for the School Year

Many kids have already started the new school year. I know many of you are nervous about the changes this year. Be sure to pull that copy of RAISING A SENSORY SMART CHILD off your shelf (and pick up a copy for yourself–even for your child’s teacher!) and do take a look at our chapters on advocating for your child at school, organizational issues, and practical solutions for everyday problems. The book is chock full of practical strategies that I know you’ll find invaluable! It will help you set up a sensory diet for your child, with or without the help of an occupational therapist.

Do you have back to school rituals you share with your child? Do you write a letter to her teacher, or teachers? I’d love to know what you do to help ease this BIG transition each fall for your child with sensory processing disorder.

HELP YOUR SENSORY CHILD GET READY FOR THE SCHOOL YEAR

“Back to school” traditionally means buying fall clothing and school supplies, but there are other equally, if not more, important ways to get your child with sensory issues ready for the new school year.

Prepare your child with information. Sensory kids deal with so much unpredictability in the sensations they experience everyday that they tend to become more anxious about transitions than they would if they didn’t have sensory issues. Your sensory child may have countless questions about the upcoming school year: What will her classroom and teacher be like? Will her best friend be in class with her? What will be the lunch menu the first day? Will she sit by the window? Be patient and understand that the more information she has, the less stressed out and anxious she’ll be. Try to arrange to have her meet her teacher and explore her classroom (and the new school, if she’s changing schools) before school begins.

Prepare her teachers and her special education team, if she has one, for her special needs. Although many kids with sensory issues have IEPs, a new teacher who reads it is not going to take in a full picture of what your child’s special needs are when she hasn’t even put a name to a face for any of her students yet. Consider writing a short, upbeat letter to her new classroom teacher explaining what some of her challenges are, what accommodations work for her, and how well your child articulates her needs, self-advocates, and regulates her system. Can she respond to a verbal warning to “settle down,” or does she need to be reminded to use a specific self-calming technique that works for her? Be sure to keep your letter positive, helpful, and optimistic.

Back to school can be a tough transition for children with sensory processing issues, but there ARE ways to ease the transition.

Prepare him with supplies that work for him. Kids with sensory issues often are very disorganized and need someone to set up and teach them how to use organizational systems for managing their homework and school papers. If your school has a specific assignment notebook students are to use, and systems your child is expected to master right away, it’s best to know ahead of time. Attend parent orientation and consider talking to his teacher before school begins to be sure he’s able to begin using the new system right away without too many bumps in the road. Be sure, too, that he’s given plenty of time and leeway to master the organizational system (no punishments for losing assignments when he’s getting used to a new system!). It will take extra time and patience to figure out why he’s losing papers or forgetting to do assignments. Ask the teacher if you can have your child check in with her at the beginning and end of the day to be sure all necessary materials are where they need to be. Make use of backpacks and folders with many pockets but be sure your child is consistent in using those pockets. It’s helpful for your child to know his snack is always on the outside pocket of his backpack and his homework to be handed in is always in the same folder pocket.

Prepare him with clothes that work for him. Many sensory kids find it difficult to transition from summer clothing into fall clothing, and from favorite summer clothes to school clothing or school uniforms. Be patient, be willing to launder new clothing multiple times to make it softer, and be accepting of his need to wear shorts and sandals longer than the other kids do as autumn arrives. Check these the online stores for soft clothing options that may work for your child:

www.luvmum.com

www.tereskids.com

www.hannaandersson.com

www.smartknitkids.com

www.ezsox.com

Get involved in helping your sensory child get organized EARLY. Don’t wait until the homework notices start arriving!

 

More quick tips for helping your sensory child at school, especially for teachers: www.sensorysmartparent.com

Buying anything this from Amazon and its affiliates such as Drugstore dot com? Please consider buying it through http://www.sensorysmartparent.com (click on the copy of Raising a Sensory Smart Child and you’ll be at Amazon’s site) or VIA THIS LINK to help offset the costs of the Sensory Smart News and the Sensory Smart Parent website! Thank you for your support!

 


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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!

 

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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!

 

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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

 

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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.”

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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