Category Archives: Special Needs

Three Voices of Inspiration: Promoting Accommodation, Acceptance and Appreciation of Differences 3

Abilities & Diversity, Asperger's Syndrome, Autism Spectrum, Differences, Education, Friendships, Girls on Autism Spectrum, Special Needs • Tags: , , , , , , , ,

What is Inspiration? The Merriam Webster Dictionary defines inspiration as “the act or power of moving the intellect or emotions.” People who work to change the world to a place where we appreciate differences inspire others. They accept the challenge to heal society of its wrongs. They raise their voices to educate others as they work to forgive them for their lack of understanding.

I am among the privileged that heard voices of inspiration recently at the Pacific Rim International Conference on Disabilities & Diversity. Their voices made me realize that they are not the ones disabled; society’s treatment of them gives this illusion. The truth is anyone who fails to see others soul to soul is far more disabled than anyone we call “disabled.” Society is wasting brilliant minds by failing to see this.

There was so much inspiration in one place! Three of the voices that inspired me the most were Keith P. Jones of Soul Touchin, Drew Goldsmith of IamNorm.org, a site that no longer exists, and Laura Nagle of the documentary, Vectors of Autism.

Keith P. Jones has cerebral palsy, but please do not feel sorry for him. He is one of the best voices for advocacy I have ever had the privilege to hear. He gave his presentation to a standing room only crowd while he cracked jokes and told how he handles those who inappropriately invade his personal space. Hint: Never ever ask to pray for him and then pray for the “sins of his mother.” His mother did not cause his cerebral palsy and she is no sinner!

Drew Goldsmith turns sixteen this month, but he has already accomplished much in his young life, so please No Pity when you learn that he is autistic. Not only is he a film creator, he also started a website, “I am Norm” to educate others and change the perception of others about being “normal.” I love this young man and wish him all the best in the future. I know he can go far if society allows him to do so.

Laura Nagle is an Aspie woman who prefers being called an Aspie instead of Autistic because, “That man (Hans Asperger) got us.” I am proud to call her my friend. She found me on Twitter months ago and identified me as a “half-Aspie”, a term I have come to love. The movie Vectors of Autism premiers April 13th in Flagstaff, AZ on the NAU campus. She talks about how society holds people back much more than anything else does. She wants to heal society as do I. She does not like using the word disability and I understand completely. She and other adults give parents a better understanding of Aspie and autistic children in a way that no one else can.

Seven Myths About Sensory Issues 9

Sensory Sensitivity, Special Needs • Tags: , , , , , , , , , , , , , , ,

By Bobbi Sheahan

I appreciate the opportunity to return to D.S. Walker’s site as a guest blogger! Today, I’m back to talk about Sensory Processing Disorder, which was formerly called Sensory Integration Dysfunction.

Our senses are what we humans use to perceive. In addition to our five senses of taste, touch, smell, hearing and vision, people also perceive temperature, balance, acceleration, proprioception/kinesthesis (where one’s body is in space), and pain. When any of these “senses” are calibrated differently from the norm, it is considered a sensory difference.  These differences can rise to the level of sensory dysfunction, which can be dangerous. For example, my child seemed, for years on end, to have no sense of smell and perception of pain. Before having my daughter, I’d never thought of pain as a good thing, but it is actually an extremely good thing; pain is a useful signal that tells us to stop doing something.

I recently had the privilege of speaking with Marla Roth-Fisch, author of Sensitive Sam and a Board Member of the Sensory Processing Disorder Foundation. She was very patient with my questions. I asked her all about sensory issues, and wow, did I learn a lot about sensory challenges! I’ll now share with you some basic misunderstandings about Sensory Processing Disorder that Marla and the SPD Foundation can help us to clear up.

Myth: Sensory issues are really discipline issues. 

Truth:   When a child is hypersensitive, you may think that he’s just being high-maintenance. If, on the other hand, your child is hyposensitive, you may feel as if you are parenting a human cannonball. Often, you may see a little of both. In either event, your child isn’t doing this on purpose to annoy you, even though it may feel that way. You may just think that Johnny is a picky eater, but the truth is, you can’t “solve” a sensitive child’s issue by continuing to irritate him further. His brain is processing information differently, and he needs some help to cope with that. As parents, we have to remember that we’re trying to help our kids to be able to function, not just trying to get them to be compliant in the moment. There are all sorts of things that we can do to help. For example, if a child has a sensitivity to certain types of clothing – maybe he doesn’t want to wear jeans or clothing with labels – there are clothing companies who make nothing but soft clothing, such as www.softclothing.net . Instead of treating a sensory issue as a discipline issue, you might spend some time with a good Occupational Therapist, who can acquaint you with a sensory diet (it’s not about food – well, not JUST about food) and provide you with tools such as weighted blankets that can help your child to feel comfortable and adapt. These sorts of things can make a big difference, and I’ll bet you’ll see more pleasing  — and safe – behavior, too. As Marla Roth-Fisch explained to me, a child with SPD is special, not bad.

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Microsoft Office Clip Art

Myth: For a sensory issue to be real, it should be consistent.
Truth:  Sensory issues can be very slippery!  Carol Kranowitz, in The Out of Sync Child, points out that kids can have sensory issues in one area (say, hearing or vestibular) but not another (auditory or smell for example). She also points out, “Sometimes the child will show characteristic of a dysfunction one day but not the next. For instance, the child with proprioceptive problems may trip over every bump in the pavement on Friday yet score every soccer goal on Saturday. Inconsistency is the hallmark of every neurological dysfunction.” At our house, we have a child who went from demanding dangerously-hot showers (she insisted that showers at a reasonable temperature were Cold Showers) to not really seeming to notice water temperature at all. She – and her mother — can also veer from agile to clumsy in a single bound.

Myth:  Sensory Processing Disorders are rare.
Truth:  According to the SPD Foundation, as many as one in twenty people deal with some sort of sensory integration issue. (This number may be even higher, and it appears to be on the rise.) Don’t like labels on clothes? Bugged by sounds that the person next to you doesn’t notice? Insensitive to pain? A bit of a klutz? Could be a sensory challenge. If it is, you aren’t alone. And you aren’t crazy or high-maintenance either. Sensory issues are real, and they are HUGE. Speaking for myself, I didn’t appreciate my own sensory processing differences until my daughter was diagnosed with autism. Like most kids with autism, she has a boatload of sensory differences –  although, interestingly enough, sensory issues aren’t part of the diagnostic criteria for autism. (I’ll restrain myself from digressing into that topic, but I’m tempted…)

Microsoft Office Clip Art

Myth:  There’s nothing you can do about sensory issues.
Truth:  There is more help available than you might realize! Good Occupational Therapy for SPD is fun, play-based, and family-centered. Another great jumping-off point is a lovely children’s book by Marla Roth-Fisch, called Sensitive Sam. I love this book for many reasons – the adorable illustrations, the great information, the fun rhyming format, the fact that my kid won’t give my copy back to me – but the thing that jumps out to me about the book is the fact that so many people – children and adults alike — can pick it up and have a lightbulb moment – “Hey, I do that! Thought I was the only one!” I think the word I’m looking for is accessible. It’s delightfully accessible. If we can be accepting and compassionate about our own sensory issues, we’re going to be in a much better position to help our kids understand theirs.

MicroSoft Office Clip Art

Myth:  There’s nothing good about having sensory issues.
Truth:  There’s no doubt that having one’s senses calibrated differently is a challenge, but there is lots of help for the challenges, and there is an upside too. I call them Sensory Superpowers. My daughter and my husband, for example, have sensitive hearing, but it is coupled with an ability to hyperfocus, and I have seen them accomplish amazing things as a result. Find me a genius, and I’ll bet you’ve just found someone whose senses are very acute. 

Myth:  Kids will just outgrow their sensory issues.
Truth:  Maybe they will, and maybe they won’t. If a sensory issue rises to the level of interfering with daily enjoyment of life, this is where an Occupational Therapist can be a big help.

Myth:  I don’t have sensory issues.
Truth:  Okay, this one might be true. Maybe you do, and maybe you don’t. Gifted people, and those with autism and ADHD, are more frequently diagnosed with Sensory Processing Disorder. Lots and lots of people – including people with no other neurological or physical challenges or disabilities – have sensory sensitivities. For years, I’d say, “I have high pain tolerance,” or “I have a sense of smell like a dog,” and I did not realize that these were Sensory Superpowers.

More Resources:  Want to learn more about Sensory Processing Disorder? Lots of great resources are available at http://www.sensoryworld.com/ and Marla Roth-Fisch’s website is terrific:  http://www.sensitivesam.com/author/authorillustrator-marla-roth-fisch  Marla’s book, Sensitive Sam, and Dr. Lucy Jane Miller’s books, No More Secrets and Sensational Kids, are available from Future Horizons with a 15% discount plus free shipping when you use the checkout code BOBBI: . For a more in-depth look at the use of deep pressure, I also recommend to you an excellent article written almost twenty years ago by Temple Grandin, Ph.D., called Calming Effects of Deep Pressure in Children, College Students, and Animals, published in the Journal of Child and Adolescent Psychopharmacology, Volume 2, Number 1, 1992, Mary Ann Liebert, Inc., Publishers, which can be found here: http://www.grandin.com/inc/squeeze.html

Bobbi Sheahan is co-author of What I Wish I’d Known About Raising a Child With Autism; A Mom and a Therapist Offer Heartfelt Guidance for the First Five Years (Future Horizons, 2011). Portions of this article are excerpted from Chapter 3 of the book, which is available at www.fhautism.com and wherever books are sold. Bobbi is also the cohost of the internationally-broadcast Autism As They Grow radio show, which broadcasts live on Wednesday nights, 9:30 Eastern/6:30 Pacific/1:30 a.m. London/Dublin and is available in archives anytime at www.talkingspecialneeds.com.


Pacific Rim Disability and Diversity Conference Anyone? 2

Abilities & Diversity, Differences, Education, Fun Stuff, Special Needs • Tags: , , , , , , , , , , , , , ,

I’ll be there as an exhibitor and author and I’ll be giving away ten autographed copies of Delightfully Different. The keynotes and noted speakers looks impressive, and I know there are over 200 speakers total.

Let me know if you are coming! I would love to meet you face to face, and I might even tell you where to find the best beaches and the best shave ice.

The Friends of Special-Needs Parents Respond 17

Autism Spectrum, Friendships, Parenting, Special Needs • Tags: , , ,

and They Have a Lot to Say

I am grateful to bring you this guest post by Bobbi Sheahan, with Kathy DeOrnellas, Ph.D. and lightbulb art work by Brad Weatherford.

This article is the second of a two-part series.  Your friend’s child has autism, and your relationship is changing.  In our first article, Your Child Has Autism, And I Don’t Know What To Say, we talked about all of the ways that you could keep your friendship alive and be a supportive friend.

Now, it’s your turn. 

The friends of parents with kids on the autism spectrum responded to our first article, and they had a lot to say.   I’ll start with the good stuff (and there’s lots of it).    When I asked for a response, I knew that I was sticking my neck out.  To be honest, I felt a little Forrest Gump-ish, not knowing what I’d get.  I needn’t have worried.  Many, many of you expressed admiration, love and support.  A mom of five, who asked to remain anonymous, summed it up best:

“I can’t imagine what it feels like to look at your child and worry that she’s going to put a light bulb in her mouth. [Note to readers:  yes, my child tried to eat a light bulb.  It was memorable for all involved, including the doctor.]  When I see special needs families, I just want to hug them and thank them for bringing these precious children into the world.  I can envision, I can listen, I can empathize, but I don’t have the struggles that you have.  You are a hero.”

While you’re feeling the love, I’ll move on to some tougher stuff, such as:  They want to have enough information to act upon, while also being able to talk about other things.  Dealing with special needs may be our reality, but our friends do sometimes need a break from hearing about it.  Let’s start at the jumping-off point of our first article, which is a friend’s lament to the New York Times.  http://www.nytimes.com/2011/10/23/fashion/of-course-shes-worried-social-qs.html?_r=2,  Turns out that yes, we special needs parents Really Are Bores Who Never Talk About Anything Else.  If I were feeling defensive, I’d say that we’re just like other parents, only more so, and all parents talk about their kids.  Even so, we can take the hint and occasionally change the subject or make the extra effort to ask How Was Your Day while we’re at it.

Another part of the woman in the New York Times’ lament is that we sometimes try to diagnose our friends’ children. Unless we are “trained professionals,” it’s probably not helpful to our friends to point out symptoms of autism that we see in their children. Even if it’s true, our friends don’t like it. So, even if our best friend’s son is hyper-focusing on horses or computer repair, it’s not our job to diagnose him. Just as our in-laws and other well-meaning individuals often believe that (from their perspective) there’s “nothing wrong” with our kids, we may be looking at our friend’s son from our own perspective, which – we’ve already established – has some unique experiences behind it.

We make them tired – and sometimes we make them think — when we see autism everywhere we look.

My friend Karen, asked, “Do you have to try really hard not to see everything through the prism of autism?”   That was a tactful way to put it.  Thanks, Karen. (It brought to mind an old Fawlty Towers episode where John Cleese thought that Everything Was About The War, but if I have to explain it to you, it won’t be funny…)

Karen hastened to add that the “I’m a Hammer, and Therefore Everything is a Nail” approach isn’t entirely bad.  For example, although none of her children have autism, more than one of them chews on their clothes, and she was glad to learn about Chewelry (www.chewelry.ca) from me.

Perhaps we’re not giving our friends enough credit.  We may need to give our friends credit for being much more understanding than we realize.  After all, we chose them as friends in the first place, didn’t we?  Renee Malove is a kind, kind person who read our first article, and boy-oh-boy, did she have something to say.  I can’t improve on Renee’s words, so I won’t try. Here goes:

Chances are, I won’t mind.

If your child is at my house and they start to melt down, I won’t mind.

If you have to cancel a date because it’s just been one of those days, I won’t mind.

If you’re three hours late for whatever we had planned, I won’t mind.

If I’m at your house and they’re having a bad day, if they’re watching “The Fox and the Hound” in my living room for the millionth time just so we can have an hour to have coffee, I won’t mind.

But I can’t prove that to you if you don’t let me.

I want to hug her.

Explanations are good.  Before I ever had reason to think that autism had anything to do with my family, I attended a parents’ meeting where a mom named Eileen Moore spoke to the group about autism.  She handed out a one-page information sheet, and she brought up specific instances about her son:  “When you want to get his attention, he’s really not ignoring you.  You have to get right in front of him and get him to make eye contact, which is really hard for him.”  She explained that what appeared to be defiance was actually hyper-focusing, and that he had difficulty controlling the tone and volume of his voice.  She answered a lot of questions.  Obviously, I was impressed, since here I am writing about it more than seven years after the fact.

The things that we live with all the time – the therapies, the exhaustion, the battles over the IEP or the potty – are things we couldn’t have imagined Before We Lived Them.  Let us not imagine that our friends have more imagination than we do.  Let us spell it out a bit more than we have been.  Clarity is good.

Another example of the benefits of Just Spelling Things Out comes from my dear friend, Kassi.  When our kids were smaller, she felt awkward about the fact that the Sheahans seemed to be the permanent hosts for playdates.  She said,

“At first, I felt bad when you kept hosting us all the time and we never seemed to get to reciprocate, but over time, I saw that it really did work out the best and it really was what you wanted.   When one of your kids needed to be alone, or go to a special quiet place, or had a challenge, it was so much easier for us to be at your house.”

Kassi has earned a place in my Friend Hall of Fame for this and other kindnesses, including distributing birthday cake much earlier than planned when it became obvious that one family (we’ll call them “the Sheahans”) was going to leave much sooner than the rest.    (When I read this to Kassi, she insisted that there is much more reciprocity in our friendship than I am letting on, but I think she just said that because she’s such a champ.)

They worry about the toll on us.  Yes, they are bummed when we won’t go and have a beer with them, but it’s not just because we’re spoiling their buzz.  It’s because, to them, we look like the parents of newborns:  sleep-deprived, crabby, relentlessly living a sprint as a marathon that never ends.

They really do want to make the friendship work.  Honest.  Some of them are concerned that they’ll hurt or offend us with a question or with using the wrong term.   There’s a lot that we can do to help with that.  It’s time to ask some leading questions and really listen to the answers.

They wonder (and/or worry) about our other kids. 

This is a concern that they may not realize that we share with them.  I think that it’s a good concern to share with our friends.  We may get some helpful feedback, and it’s good for them to know what we’re thinking.  Even the best friend isn’t a mind reader.   In my book, I wrote quite a bit about the importance of not casting siblings as hostages in Autism World 24/7.

Let us not forget our fellow special needs parents!  In writing this article, I was also reminded that we special-needs parents are in a unique position to reach out to one another.  I’ve been blessed to have received a great deal of support from other special-needs parents, particularly those more experienced than I.  I try to pay it forward.  Fiona, the mom of a special-needs child, summed up the point I’m trying to make:

“I am grateful that I have been blessed with a number of supportive friends and they know who they are, they do it without expecting anything in return and love me as I come. I want to be that friend too.”

The professionals know when we’re blowing them off, and it frustrates them.  I’m going to wrap up by bringing in yet another category of friends.  I had quite a few responses from educators, and there was a definite theme.

I’m bound to aggravate some of you with this one, because I know that we have all had both good and bad experiences with teachers, school administrators, and therapist-types.

Please know that I’m including this one because I think it might help you and me and all of our children.  One of the Good Guys, who definitely qualifies as a friend to us and our children, asked me to tell you, Gentle Reader, that she’d really appreciate it if you gave her and her colleagues the benefit of the doubt.  I’ll hide behind the nearest chair while I let her share her point of view:

“We are with your kiddo every day in a much different setting than at home. We see them in different light, place an entirely different set of demands on them; therefore, keep an open mind and take what we recommend as helpful, meaningful advice….not an attack…so don’t fight us.”

I’ve seen fire and I’ve seen rain, and I could make your hair stand on end with my own horror story or two, but I am trying to take this advice to heart and remove the Brass Bra before my next encounter with a professional who is unfamiliar to me.  There’ll always be time to put it back on later if needed, but maybe I’m about to meet a cherished friend who will earn my trust and be a blessing to my child.  That was certainly the case when my family and I met Dr. DeOrnellas, my co-author; we were still reeling from some bad experiences, but I am so glad that we approached her in good faith and with open minds. I don’t even try to think about where we’d be if we hadn’t met her when we did.

Thanks to all of you who took the time to write in and let us know what you’re thinking. Friendships are important to those of us with special-needs children and it’s good to know they’re important to you, too.

I mentioned a resource in Part I of this series, but it’s so good, I’ll mention it again for anyone who may have missed it.  If you are a special-needs parent, or a friend of a special-needs parent, I recommend that you read Parent Coach Connie Hammer’s wonderful article, “Parenting 101: Where Did My Friends Go?  Dealing With a Shrinking Social Circle After a Diagnosis of Autism.” http://www.momeomagazine.com/parenting-101-where-did-my-friends-go-dealing-with-a-shrinking-social-circle-after-a-diagnosis-of-autism/    It’s a deeper look at some of the topics we’ve mentioned here, and I recommend it highly.  Connie also Tweets at @conniehammer, so if you’re looking for a friend who really Gets It, check out her daily Tweets.  They’re good.

The Last Word Goes To The Parents.  Perhaps you’ll forgive me for giving the last word to The Special Needs Parents, but it’s time for us to say thanks.  Thanks to those of you who’ve brought chicken salad, who’ve given our kid a sensory break with a favorite DVD, who’ve offered a hug, who’ve made an exception for us and our kids.  To quote a wonderful excerpt from The Other Julia Roberts, who Tweets at @JuliaRoberts1:

Thanks if you’ve ever been a part of helping me or another family of kids with special needs in a simple way. I’ve learned that people who do those little things are the exception in many ways. You’ve probably helped me or a family like ours in a way you don’t think is much, but we do. We remember. We remember all the times we’ve had exceptions. Every single one.

Amen to that.

Bobbi Sheahan and Kathy DeOrnellas, Ph.D., authors of What I Wish I’d Known About Raising a Child With Autism; A Mom and a Therapist Offer Heartfelt Guidance for the First Five Years (Future Horizons, 2011).  It is available at www.fhautism.com  (for a special discount, use the code BOBBI at checkout), or wherever books are sold.  Bobbi would love to hear from you at me@bobbisheahan.com.

Mahalo to Bobbi and to everyone who contributed to this post and to all of my friends who help keep me standing during difficult times and who bring joy and laughter into my life.  You know who you are.