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

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 and Laura Nagle of Vectors of Autism. Click on the links for more information about them.

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.

If You Know About This Twitter Hashtag 4

#youmightbeanautismparentif, You might be an autism parent and even if you aren’t I hope you’ll keep reading and share the tweets on Twitter and share this post on Facebook, Google Plus, etc.

#youmightbeanautismparentif you miss those who decided to stop blogging.

#youmightbeanautismparentif your heart breaks for all the times your child has been misunderstood &/or mistreated.

#youmightbeanautismparentif you have been misunderstood too.

#youmightbeanautismparentif your wish for the future is a kinder, more understanding and supportive world.

#youmightbeanautismparentif you don’t have time for pettiness because you spend your time repairing damage done by misunderstandings & meanness.

#youmightbeanautismparentif your heart breaks because your child did not have support from family, friends or professionals until she was older.

#youmightbeanautismparentif your focus is on educating others so they avoid your mistakes.

#youmightbeanautismparent if you see sensory sensitivities and traits of autism in characters in novels and immediately recognize them as such.

#youmightbeanautismparentif you added more favorites to your Twitter profile in the last two weeks than in the last year including the following:

@spectrummymummy #youmightbeanautismparentif you’re doing the toughest, most rewarding job of your life- and you can never, ever go on #STRIKE.

@anne_barbano #youmightbeanautismparentif you have a beautiful singer in the house!

@spectrummymummy #youmightbeanautismparentif your child doesn’t just march to the beat of their own drum, they dance to their own symphony.

@fcsfinest #youmightbeanautismparentif you’ve felt like reciting this quote, “Autism is not a tragedy…ignorance is.”

@diaryofamom #youmightbeanautismparentif you know that autism is one word, but there is no one autism.

@diaryofamom #youmightbeanautismparentif the next person who tells you that God doesn’t give you more than you can handle might want to duck.

@bradsdad #youmightbeanautismparentif you think the world might be a better place if we all were more like our aspies!!

@AutisticSpeaks #youmightbeanautieif you wish people weren’t so hell-bent on curing you and would just let you be who you are!

@AutisticSpeaks #youmighbeanautieif “But you don’t look autistic” was old, like, the first time!

@outoutout #youmightbeanautieif You were frozen out of yet another ‘parent support group’ because you can’t fake NT if you tried. :(

@SarahMPottratz @msoricel #youmightbeanaspieif #youmightbeanautismparentif you have learned the letters after the name don’t make them an expert.

@BobbiSheahan @manyhatsmommyMI @RaisingASDKids because they started the whole #youmightbeanautismparent thread and they deserve their own #ff for that! <3

Join in the fun if you haven’t already! Those of you who are not parents of someone on the spectrum, but who still care to learn more can google all three.  People are continuing to add to them, so click on the links to learn more.

Mahalo to Jenny @manyhatsmommyMI who blogs at Many Hats Mommy for starting this and for creating a link for those who want to share the fun on their blogs and to Elise Ronan @RaisingASDKids who blogs at Raising Asperger’s Kids for creating the Twitter hashtag that has kept it going.

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 (autisticspeaks@gmail.com), I appreciate it greatly!

Lydia (aka, Autistic Speaks)

Your Child Has Autism, and I Don’t Know What to Say: Seven Ways to Go the Extra Mile to Keep Your Friendship Thriving 43

Today I am grateful to be able to share this Guest Post by Bobbi Sheahan, with Kathy DeOrnellas, Ph.D

Your friend’s child has autism, and your relationship is changing.  Let’s face it: you feel like you’re watching your friendship slip away.  You say, “If there’s anything I can do…,” but your friend doesn’t suggest anything, and you feel like a jerk.  You see less of her than ever.  Can This Friendship be Saved?  Yes, it can, and it may be easier than you think.

1.  Let’s start with the real practical stuff:    We’re not avoiding you. It can sometimes be hard for us to get out of the house with our kids, or to get around to making a meal.  Wanna be a hero?  Make dinner.  Don’t talk about it in advance, because your friend will say “No Thanks” in some combination of independence and embarrassment.  Just call or text to make sure someone will be home, and let her know you’re about to leave a cooler on their porch.  Better yet, include paper plates so there’s no cleanup.  I have a neighbor who has TWICE in the past few months called me and said, “I made too much chicken salad,” and has shown up with cornbread and cookies to go with the salad.  This is kindness, my friends.   Your friend may turn you down for book club or an evening of margaritas, but it’s not because she doesn’t want your company. She’s exhausted and can’t face the ordeal that it would be to get out of the house.  Who knew the power of chicken salad?    It’s the thought that counts, says Nagla Moussa of Texas:  “Compassion is key, offer to do the laundry or pick up groceries if you don’t know what else to do!”

Cooking isn’t your thing?  No problem.  Bringing over coffee or a dollar store balloon might work too.   Offer to go for a walk or to the grocery store with Mom or Dad at an odd time – like late in the evening or at 5 in the morning, when the rest of the family is in bed.  An alternative would be to offer to come and hang out at the house with the kids for an hour while Mom grocery-shops solo.  One trip to the grocery store with a child on the spectrum who is experiencing sensory overload would make a believer out of you.

2.  Take their other kids with you the next time you go to the park, the library, or the circus.  The siblings of kids with special needs are some of the most delightful people around, and it’s wonderful to give them a chance to go and Just Be a Kid with another family.  As I write this, my daughter is at a Fall Festival with her best friend’s family.

3.  Listen more than you feel like you should have to.  Especially when the diagnosis is new and frightening, we need to talk about it, probably more than you ever wanted to hear about it.  We’re sorry, but will you (pretty please) listen anyway?  I recently read this article http://www.nytimes.com/2011/10/23/fashion/of-course-shes-worried-social-qs.html?_r=2, which confirmed My Fear That I’m a Terrible Bore Who Doesn’t Talk About Anything Else. If you can be patient when we need to Talk About Autism Yet Again, we will eventually tire of the topic and you will have our eternal gratitude.

4.  Be willing to talk about things OTHER than special needs.  Yes, that may sound like a contradiction of what we just said, but really, it’s not.  Make your friend laugh.  Drag him out to the movies.  If he or she can’t get away, bring over a funny DVD and watch while the kiddos are asleep.

 5.  If you are inviting the family over, ask specifically about how you can accommodate, and try to follow the parent’s lead about the extent to which the child will be involved.  No gluten?  No problem.  Your Halloween decorations or your perfume may trigger a meltdown?  Easily fixed.  They are leaving their child with a sitter even though you’ve insisted it’s okay to bring her?  That’s fine too.

It’s much easier for us to tell people what we really need to do if they let us know that they want to know.  Otherwise, we will probably decline perfectly wonderful invitations just to avoid being an imposition on you.

For example, a child with autism might have a favorite video that can be the default setting when the socializing gets to be too much.  Kids may have certain foods that they must avoid, or certain colors that freak them out.  A child may need safety precautions that would be easy for you to take.  The family may want to be home earlier than most, so dinner could start early.  Jeannie, an adult whose only sibling, a sister, has special needs, says:  “Ask the parents if they want to also include their child to join everyone when they go out.  It is hard to find a sitter for someone who is an adult and has special needs. Including them is so nice because they already feel isolated and left out as it is.”

6.  Ask the questions that you really want to ask.  Ask your friend leading questions.  Ask her to tell you her greatest joy or her greatest fear or The Thing She’s Afraid You Won’t Want to Hear.  It may be, “I’m afraid my kid will run around naked or break stuff at your house,” or “We may have to leave before the screeching sends the neighbors running.”   Whatever it is, it’s a kindness to let her know that you really do want to hear it.  I’m sad to tell you this, but many people don’t want to deal with another family’s struggles, and you may feel avoided when in fact the parents simply don’t want to burden you.  So, just ask.

A “Mom of an Aspie” who blogs at www.aspieside.wordpress.com  said: ” Maybe it would be better if I just explained up front what I need in a friend… Please don’t think that I am selfish but any plans must be made around my child’s schedule because routines are so important to my child well-being.  If I have to leave unexpectedly or cancel last-minute, I am really sorry and I would appreciate your support and understanding because I am already facing very stressful circumstances.” Yes, this is a tall order, but you are a good friend.  Otherwise, you wouldn’t have read this far.

Another thought:  One reason that your friends might not speak up is that they have learned, through difficult experience, that when they try to simply explain things, people think that they are being given the overwhelming (not to mention impossible) task of Fixing It All, or, as Claudia put it, “Or they think you are looking for charity. Sometimes a listening ear is enough.”  She went on, “Don’t become a know-it-all or  fix-it-all.  Be there and let them know you support them.” Err on the side of asking questions rather than giving advice or opinions.  It’s hard to do, but it will make you a hero to your friend.

7.  Give her the benefit of the doubt.  Here’s a tough one.  What if you’ve judged your friend and thought that you were witnessing bad behavior (and/or bad parenting) when in fact a child may be having a sensory issue or simply be overwhelmed?  Did I just make you cringe?  Sorry.  It’s an understandable mistake; we (that is, the parents) often make it too. Venessa, a reader, has some advice:  “Try to understand that the parent IS addressing the issue and these things take time–sometimes a LONG time — and you’re just seeing a snapshot. If it doesn’t adversely affect you; and particularly when you see that this child’s siblings seem pretty well-adjusted, try to have a little faith in this parent.”

Venessa then reflected on the isolation that a special needs parent often feels, compounded by fatigue: “This parent is probably tired and exhausted (like you are); only the struggles with special needs kids have made her feel lonely and incompetent.”

We said this a few paragraphs ago, but it really is true.  If you’ve read this far, I know that you’re a good friend.  We’re not trying to be selfish; it’s just that we’re at our wits’ end.  This may sound like a lengthy list of demands, but it’s really just a renegotiation of the relationship, which is what is constantly happening in any healthy relationship anyway.  (Isn’t it?)

Friendship is a two-way street, and you really can have a healthy friendship with the parent of a child with autism or another special need.  They — I mean we — really need you.  Paradoxically, we seem less available to you than ever when we need you the most.  We don’t expect you to always take a back seat or to solve our problems; we just want you to bear with us a bit as we do our best to be a good friend and a good parent at the same time.  It will get better with time as we both get used to the rhythms of life with special needs.

So, to summarize, we appreciate your patience.  Really, we do.  We also like it a lot when you feed us and listen to us.  We’ll be grateful, and we’ll do our best to make it up to you over time.  Plus, in your hour of need, we really hope to be there for you too.  Through necessity, we tend to be good in a crisis.

If you’d like to know more about this subject, another excellent resource is 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/ From the emotions that a parent feels in response to the diagnosis, to the realization that Johnny isn’t going to be welcome in some playgroups, to the reality of having one’s life consumed by therapies, author Connie Hammer goes deeper into the parents’ point of view, and I recommend it highly.

Just after I finished writing this article, a friend pointed out a lovely post on the same topic, which is found on the perfectly-named blog “I Love You Song:” http://theiloveyousong.blogspot.com/2011/10/10-ways-to-help-family-living-with.html

This is the first of two articles.  In our next article, it’s your turn!  That’s right; the friends will talk back.  If you have a friend whose child has autism, and there’s something you’ve always wanted to tell them (or ask them), please email the authors at me@bobbisheahan.com.  If we use your comment, we’ll say so unless you indicate in your email that you’d prefer to remain anonymous.

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 and wherever books are sold.