Even just a 5-minute walk outside or a short visit to a lake can lower the level of your stress hormones. Be sure to get outside with your sensory child!
Even just a 5-minute walk outside or a short visit to a lake can lower the level of your stress hormones. Be sure to get outside with your sensory child!
Recently, a person with a PhD in the humanities, who is chair of a department at a prestigious private university, said to me, “You’re wasting your time talking to people online about autism. Autism doesn’t exist outside of the United States. The rising number of cases is just another example of mass hysteria, people convincing themselves that there’s a problem and the pharmaceutical companies taking advantage of them. We always had people with autism and they got jobs. The only issue is that now you need a college degree to get a job so parents are pushing schools to give their kids more help when it’s their responsibility to do the extra work their kids need.”
I was incredulous and went into my logical brain. I tried to convince her that perhaps my ten years of reading the news and research on sensory issues, ADHD, and autism, and listening to parents of children with autism and related conditions talk about their struggles, might give SOME weight to my opinion and take me out of the category of “hysterical” parents. Later, I asked some people in the hidden disabilities community if they thought I should educate her by sending her some links. The consensus was not to bother, because anyone with such an extreme position and unwillingness to admit that she was not the expert of all time as a result of having met one or two college students with Asperger’s wasn’t worth the effort when there are so many people eager for and appreciative of guidance and support. A close friend said to me I shouldn’t feel insulted so much as sorry for this person, who clearly couldn’t appreciate my passion for educating and inspiring other parents and the professionals who work with their kids. I don’t know if it was actually Eleanor Roosevelt who said this, but I’ve always loved the quote, “No one can make you feel inferior without your consent”! (At one point, I asked, “So you think my work is stupid and pathetic?” She did not contradict me but continued her diatribe. To my credit, I did laugh at the audacity of her non-response!)
“Do you even get paid for the work you’re doing?” the PhD asked me.
My gut dropped. I had, after all, just lost two freelance jobs worth five months’ income in the last week and had been “singing a happy tune” to try to prevent panic for days.
“No,” I answered. “Well, I make enough money selling Amazon.com items through my website to pay my hosting fees. And I earn about 48 cents for each copy of my book sold. But sending out my newsletter, advising people online—no, I don’t get compensated for any of that.”
The PhD’s eyeballs rolled. “Your son doesn’t even have autism.”
“Yeah, but his issues overlap autism, and SO many kids with SPD also have autism! I want to better understand the special challenges of kids with other hidden disabilities so I’m more sensitive when I advise parents. And besides, isn’t there some value in giving back when you have so much information and insight that can help others?”
The PhD had no answer for that. I suppose information and insight about something that doesn’t exist except in the minds of neurotic U.S. parents doesn’t have much value!!!!!!
It’s funny—so often, parents of neurotypical kids try to one up each other, comparing whose child meet their developmental goalposts first, whose child is more extroverted (so highly valued in our culture), or who said something so intelligent that surely he’s a shoo in for an Ivy League school. Maybe that’s why someone who doesn’t know us parents of kids with hidden disabilities thinks we’re all obsessing over college. In ten years of being in online support groups for parents of kids with sensory processing disorder, I’ve never experienced a parent trying to one up another. Ever. Nor have I ever experienced it with parents in my community who have kids with hidden disabilities. Now, we do congratulate each other when someone’s child consents to a dental procedure with Novocain for the first time, or ties his shoes by himself at age nine, or goes an entire day without wetting the Pull-Up even though he’s eight—because we know how much effort went into achieving that milestone. And maybe we can’t find the time to play the “one up” game because we’re too busy trying to get that homework assignment to travel from the homework folder to the teacher’s desk without showing up at school to make that happen, ensuring that our child will get credit, a grade that isn’t a demoralizing F, and feedback we can use to help her work on her language disability that keeps tripping her up.
I feel I lucked out by getting connected to parents for whom parenting isn’t a competition so much as a collaboration—between Mom, Dad, grandparents and other caregivers, teachers, therapists, other parents who can share their wisdom, and of course, our wonderful kids. We cheer each other on and help each other out. I’ve seen parents join support groups desperate for answers and for someone to say, “I’ve been there. You’re doing great!” only to pass forward that message to another newbie when they’ve found their “sea legs” as a parent of a child with a hidden disability.
I could post here a bunch of links showing that autism is on the rise in many countries, that many experts debunk the idea that diagnostic changes alone are responsible for those rises. I could also post links to research articles and news pieces about breakthroughs in understanding and treating sensory issues and autism, which many of you know I post on the Facebook page for the book Raising a Sensory Smart Child whenever I come across them. I love to participate in conversations about how we can best help our kids shine in a world where “quirky” doesn’t always fit in so neatly, and how we can keep our spirits up when we’re feeling misunderstood, frustrated, or worn out. At the same time, I have to balance that with enjoying my own family, helping my son get the extra help he needs, running my business, and being good to myself. So I’ll let the skeptics check out the book’s Facebook page, use a search engine, and do their own work to convince themselves that we parents of kids with sensory issues, ADHD, and autism are not dealing with “mass hysteria” and aren’t being “duped by the pharmaceutical companies” into imagining our kids need help. And I’ll choose to feel sorry for those who don’t know what a joy it is to have a quirky kid and a slew of supporters cheering you on whenever you feel discouraged. Thank you to ALL of you who participate in this marvelous community of people who care about kids with hidden disabilities. I know you’re out there and I appreciate you!
(Okay, I can’t help myself. Here are some helpful links for finding support groups and resources for your quirky kid:
Sensory Processing Disorder is real and it affects our 7 senses. There is so much to learn about how to help our kids with sensory issues!
As I look forward to my son entering his teens very soon, I’ve been thinking a lot about teenagers and sensory issues. Years ago, when I was first thinking about writing a practical guide for parents of kids with sensory processing disorder, I knew I wanted to cover teenagers and their sensory challenges. I knew of teens with SPD and I recognized that there was nothing out there in books or on the internet to help parents. I’m very proud to say that my coauthor, Lindsey Biel, OTR/L, and I were really at the forefront of talking about sensory issues in teens in our book.
I’m repeating here my most recent Sensory Smart News because I know how eager moms and dads, and professionals who work with teens with SPD, are to get info aimed at this particular group of kids. So here it goes:
Teens with sensory processing disorder have special challenges because of the stage of development they’re in and the fact that until now, their sensory issues may have gone unaddressed. In the award-winning book Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues, you’ll find an entire chapter devoted to teens as well as many practical tips for older kids. If you are unfamiliar with the special challenges of teens with sensory issues, here they are—followed by practical strategies for addressing those challenges.
1. Finding the right OT can be challenging. Few occupational therapists are trained or experienced in working with teenagers who have sensory processing disorder. Play-based SI therapy may seem silly and embarrassing to teens.
2. Poor self-esteem. Teenagers who have had sensory issues for years will have learned at least some accommodations to get around them and are less likely to experience the extreme behaviors and responses they did when they were younger. However, years of feeling different and not knowing why, and noticing that they have never been quite as mature and self-controlled as their peers, take their toll. Teens with sensory processing issues usually struggle with self-esteem. They need a lot of encouragement to admit they have sensory issues and need some help.
3. Need for independence. Teenagers need to have their independence respected, so being told, “You need to do X, Y, and Z to manage your sensory issues” usually doesn’t go over very well!
4. Desire to fit in. Even teenagers who don’t feel the need to have a lot of friends or be conformist want to have some friends they feel they fit in with. Sensory challenges can embarrass them and may make them feel isolated, and different in a negative way.
5. Changing hormones. Teenagers have ever-changing hormones that can exacerbate sensory issues by making them more sensitive to input than they were in the past. The normal changes of adolescence can also make them more moody and emotionally sensitive.
6. New expectations. People are less likely to see your teen as a young, immature person with a hidden disability and more likely to see him or her as a young adult whose behavior is willful.
What’s a parent, teacher, or therapist to do?
1. Modify traditional SI therapy techniques to be more teen friendly. As a substitute for playing with a tray of shaving cream or finger-paints, encourage the teen to cook, garden, do art or arts and crafts, and engage in other activities that challenge his tactile issues. Work with a sensory-smart occupational therapist who is willing to alter her approach to helping your teenage son or daughter to reduce any embarrassment or defensiveness.
2. Talk about sensory issues positively. Reassure your teenager that sensory issues are simply a difference in brain wiring that can have advantages but that can also be controlled and addressed to make life a little easier. See Raising a Sensory Smart Child for specific advice on helping teenagers overcome their defensiveness about having sensory processing disorder and how to talk to them about the “little tricks” you and the OT can teach them to “make their lives easier.”
3. Offer accommodations and sensory diet ideas for him or her to choose from. Present accommodations and activities to teenagers and let them decide which they would like to use. Honor and respect their choices and encourage them to engage in problem solving with you. If they don’t want to be seen doing a brushing protocol for tactile issues, can they do it discreetly in the bathroom at school? If all the kids are wearing loose clothes and they prefer them tight, can the teen wear tight clothing, such as bicycle shorts, underneath looser clothes that seem more stylish?
4. Help him to feel okay as he is and find a group of peers he’s comfortable with. Practical solutions for grooming, picky eating, and dressing, and encouraging talks about the upside of being different, can help your teen with sensory issues feel more comfortable among his peers. However, he may also feel better about himself if he expands his group of friends. Encourage your teen to develop hobbies and engage in new activities from individualized sports that don’t require high levels of skill and competitiveness to enjoy them to groups that engage in the arts, community service, spiritual growth, etc. Extracurricular activities can help kids find their “tribe” and feel the power to make a difference in the world as well.
5. Accept that your child may be more emotionally sensitive at this stage. Be alert to signs of increased anxiety and depression and consult a medical health professional with any concerns you have. Remember, addressing sensory issues will reduce overall anxiety that can lead to mild or moderate depression (when you feel you can’t manage your discomfort, over time, you can develop depression). Don’t forget some of the most effective treatments for mild or moderate anxiety and depression include physical exercise, time spent outdoors, meditation, and breathing exercises. Mindfulness practices from yoga and tai chi to tai kwan do and karate can help, too.
6. Focus on self-awareness and accountability for self-regulating. It’s very difficult to get others to accept poor self-regulation in a teen, even if you educate them on hidden disabilities. Therefore, the sooner you collaborate with your teen in creating a workable sensory diet that prevents negative behaviors, the better. It will be easier for your teen to develop better self-regulation if she is trained in using specific self-calming and self-alerting techniques that she knows work for her. Hold her accountable for using her alerting music and gum, taking time out to sit in a quiet space and do breathing exercises or use a brushing protocol, etc. Have her participate in creating a sensory diet tailored to her needs to keep her sensory needs met and to prevent fight-or-flight behaviors. Let her experience the natural consequences if she refuses to use her calming, focusing, alerting techniques.
Above all, never forget that kids with sensory issues need a “just right” challenge, a balance of accommodations to make them more comfortable and challenges that take them out of their comfort zone. Sensory diet activities for teenagers help them to develop a higher tolerance for situations and activities they’ll encounter in life, and over time, retrain their brains to process sensory information more typically. Be creative and encouraging in setting up a sensory diet for a teenager, and always be collaborative to respect the teen’s need for independence.
Finally, if you’re a parent frustrated by trying to get your teenager’s sensory issues under control, consider joining an in-person or online support group, such as the ones on yahoogroups.com, or creating one. Knowing that you aren’t alone, and having practical and emotional support from other parents going through the same experiences with their teen, can help you enormously at this stage of your child’s development.
If you’d like your teen to try new activities in your community but are concerned that her hidden issues will make it difficult for her to participate and have fun, check out Lisa Jo Rudy’s book Get Out, Explore, and Have Fun!
Quality sleep is crucial for quality functioning, and yet we are a sleep-deprived culture. Adults drink coffee and push themselves past their tiredness, while children will naturally push themselves to be more alert and then not be able to calm down. Children with sensory processing issues usually have poor self-regulation, meaning they can’t easily bring themselves from one state of alertness to another. When tired or feeling lethargic, they will rev up to a hyperactive state and remain there. They may even endanger themselves as they get toward bedtime and become more giddy and unmindful of where their body is in relation to people and objects. Accidents are more likely to occur just before bedtime when kids are getting wired as they are getting tired. Making bedtime for children with sensory issues drama-free and easy can be a challenge.
For safety’s sake, and to get kids in bed on time to get the necessary amount of sleep, begin the children’s bedtime routine at least 30 minutes before their actual bedtime, if not longer. A few minutes between the announcement that it is time to go to sleep and lights out is not enough time for a sensory child’s body to adjust. Turn off the television and DVD early. Both are hypnotizing and overstimulating. The minutes will slip away as your child watches “just this last scene” and the next, and the next.
Dim the lights. The bright lighting that is right for playing with toys in the bedroom is too stimulating before bedtime. Read bedtime stories by lamplight not by a bright overhead light. Install dimmer switches so it’s easier to bring the level of light down as your child’s bedtime approaches.
Stick to a routine. The bedtime routine should include toothbrushing and putting on pajamas, and perhaps a bedtime story and a bath (note that bath time at night is too stimulating for some sensory kids). Many sensory kids have an easier time settling down if they perform each of these tasks in order. A visual To Do list made of stick figures, or a simple list for a child who can read, can help make the abstract agenda concrete: “Oh, I did that, now I have to do that.” Use a Time Timer® to show him when the lights will be turned out. Making time visible using a device like the Time Timer® can help a lot!
Winding Down. It can be tempting to turn on a television or put on a beloved DVD or video for your child to help her wind down before bed, but a better option is to read a book to her and discuss the events of the day in a loving and supportive way. Let your child pick a favorite story or nonfiction book. If you’re bored with the same old one, exercise your creativity. Can you alter your voice, ask your child questions, and encourage her to sound out words and read them? You might also review significant events of the day in a positive way. For instance, if your child pitched a fit after school because she had to go to the dentist, talk it through and validate her feelings, and have a short discussion on how to make things easier the next time she has an appointment. Help her to go to sleep believing that tomorrow she will do better, with your support.
Block background noise. Close doors so she can’t hear the television or a conversation going on in another room. Consider using a fan (not necessarily blowing on your child, just “on”), aquarium, white noise machine, soft music, or even a radio turned to static to block out background noise that will keep her awake. You don’t want your child to get used to dead silence before bed if you can help it, but you also don’t want to make it very difficult for her to fall asleep because of all the activity going on in your home. Turn the television down in the living room or family room, close doors, and listen when your child says, “It’s too noisy and I can’t sleep!” Keep in mind that auditory listening programs such as Therapeutic Listening and The Listening Program can make it easier for your child’s brain to develop the ability to block background noise.
Provide deep pressure input. It may help if you massage her limbs, squeezing them gently and then releasing, to calm her body. You can teach her to tighten her muscles, then release them, body part by body part, in order to self-calm any time she needs to go from an alert to calm, or sleeping, state. She may need hugging, pillows pressed against her, or a weighted blanket to help her body to fall asleep. If you want to use a weighted blanket, consult a sensory smart OT about the proper weight and use. Or, use heavy cotton blankets, if they don’t make your child too warm.
All of these strategies will help your child with sensory issues relax his system and have an easier time transitioning from an alert to a calm, then asleep, state.
Some of the bedtime stories I recommend are:
Goodnight, Moon by Margaret Wise Brown. Look for where the mouse is hiding on each page.
Richard Scarry’s Cars and Trucks and Things That Go. Look for where the yellow bug is hiding on each page. Talk about the many cars and motorcycles, and what Lowly the Worm is doing.
Go Away, Big Green Monster! By Ed Emberley. This clever book allows a child a sense of control over a scary green monster, easing anxieties and reminding him that he is safe. I especially recommend this one for anxious children.
Pat the Bunny by Dorothy Kunhardt. This sweet storybook features textures, a mini mirror, and other interesting interactive features.
It’s Okay to Be Different, and other titles, by Todd Parr. These gentle, humorous books have bold graphics and simple, whimsical storylines about how it’s okay to be different, to have feelings, and so on. The I’m Not Scared Book is especially good for kids who need to talk about their fears and anxieties.
What are your favorite bedtime stories for helping your child bring the day to a close and enter into a restful sleep? Please share!
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.
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?
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.
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!