Living Beautifully, Perfectly, Autistically 11

Today I am grateful to bring you this guest post by Lydia, who writes the blog Autistic Speaks and who is also a published author of two booksLiving in Technicolor: An autistic’s thoughts on raising a child with autism and Interview with Autism. I hope you will click on the links to learn more after you read her story:

I’m living a life I never dreamed I’d have.

As a child, the single trait I could identify in myself was that I was smart.  Ask anyone, and they’d tell you that… she’s bright, they would say.  I could read before preschool, and by kindergarten had taught myself long division.  Due to my intelligence, therefore, some, uh, not-so-minor things were overlooked.  I didn’t know how to play.  I didn’t have any friends.  I had a huge vocabulary, but I couldn’t exactly communicate.

Fast forward through my childhood and teenage years, and many questions received answers when I was diagnosed with autism in January of 2009.  I was 21.  It was my final semester of college, and things were well on their way to falling apart.  No more did I dream of becoming a doctor or a teacher… I just prayed each day that I would be able to leave my room and get through class without a meltdown.  I still only had one friend.  I made it through four years of college with nearly a 4.00 GPA, never having been to a party or sporting event due to my sensory issues.

I was relieved to receive my diagnosis, because I thought that a name for my issues meant that I could start to work on them.  Right?  Well…

Enter the sensory nightmare that has been my early 20s.  I can’t leave my apartment without assistance, which I have through my state’s Adult Autism Waiver.  I can no longer drive, because my vision and vestibular senses are so mixed up.  In order to go to the grocery store, I need sunglasses and headphones.  I feel lights and see sounds.  Due to these sensory issues, my communication has further broken down.  I am highly echolalic on a good day… and on a not-so-good day, I scream, or worse, can’t speak at all.

As if things weren’t complicated enough at this point, I was diagnosed with rheumatoid arthritis just last week.  By the time I went to the doctor, I needed to walk with a cane much of the time and was losing mobility in my fingers.  Now, when my staff isn’t here, I’ll be in intensive physical and occupational therapy as a way to try to avoid the heavy-duty drugs that would suppress my immune system.

Don’t worry, the downward spiral is finished there.  Not exactly what I’d had in mind for my life…

But there is an angel in the form of a 35-pound black lab named Lexie.  She is in training to be my service dog, and she will be the grounding force in my life.  From trips to the grocery store to dealing with those horrible fluorescent lights in the doctor’s offices that I seem to be in more days than not, Lexie will keep me settled.  She’ll sense the changes in medication levels in my body.  She might even learn to sense fluctuations in my blood sugar (oh, did I leave that off?  I’ve had type I diabetes for 21 years).

Lexie will make it possible for me to continue to live on my own, to do daily living tasks, and to… have a life!  For me, she means freedom.  Freedom not just to live a marginal existence, but to continue to live this life that is so much more than I ever could have dreamed of.

Wait, what?

I told you that I’m living a life I’d never dreamed I’d have.  I never said that it didn’t live up to my expectations… rather, the opposite!  I am so much more… myself, so much more at peace with who I am, so much more in love with my life than I ever was before the spiral started.  I’ve authored two books, with two more on the way.  I’ve had a blog about autism for nearly three years, which now carries almost five-hundred posts.  I travel locally and to neighboring states to speak about my experiences on the spectrum to parents and teachers.  I may not be a doctor or a teacher… I may not even be able to cross the street without help… but I am beautifully, perfectly, autistically Lydia, and there is nothing else I could ever ask to be.

It is via Lexie that I will be able to continue to lead this life.  She will make it possible for me to continue to do speaking engagements and to continue to live semi-independently so that I can continue to write.  Regardless of my level of communicative ability on any given day, Lexie will be there for me.  She’ll be my best friend.  Now, I have no shortage of amazing friends, but the minor caveat is that I’ve actually never met the vast majority of them.  Lexie will be a right here friend, something I yearn for deeply.

With this in mind, I wrote my second book, Living in Technicolor: An autistic’s thoughts on raising a child with autism.  All proceeds from the book go toward Lexie.  She is fully funded now (I want that to be clear, so you have the whole story), but she will need food and toys and vet visits, which, on my SSI budget, will be tight.

Thank you for taking the time to read my story.  Whether you want to buy a book, keep my puppy in your prayers, or just drop me a line (, I appreciate it greatly!

Lydia (aka, Autistic Speaks)

The Friends of Special-Needs Parents Respond 17

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.,  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 ( 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.”    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  (for a special discount, use the code BOBBI at checkout), or wherever books are sold.  Bobbi would love to hear from you at

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.

Does Special Needs Equal Medication Needs? 5

This post is part of Danette’s wonderful Best of the Best Series at S-O-S Research Blog where the topic this month is medication use related to those diagnosed with invisible special needs. I mentioned our bad experience with medications in my Therapy? What Therapy? in August, so you might assume I am totally against medication for this group. I am not.

Yet, I am against medications being the first choice especially for young children. First, you need a full workup to rule out alternative causes and to help assist in obtaining an accurate diagnosis. Yet, we have some psychiatrists who skip this step or who, if they do not completely skip it, still fail to order a complete evaluation prior to prescribing medication.

Unlike one of my fellow bloggers in this series, I do not believe the reason is for financial gain. Wonder why? I spent years working for various insurance companies, and even volunteering on legislative committees for case management organizations. I am also married to a physician. Doctors receive money as speakers, but they also go to extra training on medications and take time away from their practices to do this and most do not take prescribing new medications lightly either.

Remember it is their license on the line if a medication causes life threatening side effects. Doctors also pass on samples of medications to their patients who cannot afford them. I really want to write a post about when and why we stopped trusting any doctors, but that is a post for another day.

None of the medications prescribed for my child were samples, nor were they medications newly on the market, yet they still were unhelpful and inappropriate for her since they did not address the root of her problems, and in fact made things worse. Lack of understanding of her sensory sensitivities resulted in the wrong treatment.

I was given a check list to compare at one point to determine which diagnosis my daughter had, ADHD or Bipolar Disorder. I told both doctors that neither one really fit her, but they suggested I guess as to which one fit best. There is a reason I speak out about wrong diagnoses and especially wrong diagnoses in girls. No one even mentioned Asperger’s or autism at that point nor did they mention sensory sensitivities despite the fact that my daughter had text-book characteristics from the time she was a toddler, if the doctor listened and asked the right questions.

Once we had the correct diagnosis from a third doctor, who is a neuropsychologist and who did the complete evaluation, the psychiatrist asked me why I would want my child to have a diagnosis that no medication could treat. My reply, “Why would I want to treat her for something she does not have?”

Yes, medication can help some children as long as you have proper monitoring for side effects and as long as you have ruled out other medically researched options. Please note that many on the autism spectrum also have comorbidities that can be treated with medication. There are ongoing studies related to autism and sleep problems, so hopefully correct treatment options for this will be available too. I wrote about this in July on my Autism Myths, Legends, and Mysteries of Sleep post.

There are times when medication is appropriate, for instance when, there is a risk of harm to self or others. Even then it is important to monitor for side effects and to reevaluate once the patient is stable. Some medications can be safely weaned with medical supervision.

Inspiring Man and Movie 8

Purchased Clip Art Collection Version 1.0 Copyright 2012 Macmanus. All Rights Reserved.

Front of the Class is the story of Brad Cohen, a teacher who has Tourette’s. I love this movie for several reasons and I highly recommend it. I believe it should be required for teachers to help them understand how teachers can devalue a child when they should be inspiring them. This movie resonated with me since my daughter had a vocal tic when she was younger that a teacher actually made worse after we told her to ignore it.

The movie starts prior to young Brad’s diagnosis with Tourette’s and follows him as he interviews for teaching positions at multiple schools where they fail to see his potential. One of the interviewers tells him, “You must have had inspiring teachers.”

He responds, “I had an inspiring Principal. My teachers really only inspired me to be the kind of teacher they never were.”

She asks, “What kind of teacher is that?”

He responds, “One who makes it possible for a kid to learn even if he’s different. In a way the best teacher I ever had is my Tourette’s.”

Later he tells his students, “Never let anything stop you from chasing your dreams.”

I am grateful to Brad Cohen and others who continue to pursue their dreams and work to change the world to a place of tolerance and acceptance of differences.