Tag Archives: Autism

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.

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

Autism Spectrum • Tags: , , ,

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.  

The Effects of Bullying: Robert’s Story 4

Bullying • Tags: , ,

Join me in welcoming Robert to my first Effects of Bullying Series.

Robert’s Story

I’m convinced that schools and me were never meant to get on; my trouble with handwriting, spelling and mental mathematics caused a lot of grief. But there was something else present every day, which I detested more: break time.

For me, someone who likes to be forever mentally engaged, break time was the dullest thing ever invented. The other children would talk and play team games like football while I sat in an alcove in the corner of the playground, avoiding the missiles, waiting for the bell to go back inside.

Around nine at the time, an undiagnosed autistic, my interests lay in creativity and making things. I began bringing my creations along with me. So rather than hiding in the corner doing nothing at all, I would work on one of my projects. That’s when the bullying started.

I no longer remember many of the details, but a few students decided that it was a good game to steal and smash-up my creations. Or when they could not steal my stuff, like in class, they would threaten to smash-up my creations, doing hand gestures across the room, like snapping a ruler between clenched fists.

These things represented a great deal of time and effort and I was working with very limited resources and almost no money. Materials and tools were sacred, I worked mainly with what I could find around the house. Breaking, or threatening to break my creations was like breaking a part of me. None of these things could be easily replaced.

Like typical British primary schools, my school was very small; avoiding the bullies was not possible. Nothing the staff did made any noticeable difference and the only friends I had at the time, while great technically minded individuals themselves, were also targets and could do nothing to help. I felt trapped with nowhere to go.

A ray of hope I had been the move to senior school; a completely new set of people and nobody knows me, a chance to start over. The reality was the opposite, even though I had moved beyond lugging projects around a new set of bullies picked up my differences and the bullying started again, but worse.

Instead of focusing on my possessions, this new set of bullies started attacking me personally, kicking, punching and verbal abuse. I was terrified to go anywhere alone, hid in the Special Educational Needs room over breaks and lunch and refused to go anywhere without a support worker for protection.

Combined with the increased demand on handwriting, this meant I was always on edge, always looking for an escape route if something went bad and always ready to meltdown. Unfortunately the latter happened rather a lot, drawing more attention to my differences and making the problem exponentially worse.

These problems and the bullying continued relentlessly. Finally getting a computer eliminated my writing difficulties but the problems only really stopped when I eventually left school and went to college.

Anxiety, fear and constant observation of the environment; always looking for danger, are often cited as symptoms of mild autism. But my own experiences say something different, they are side effects of a difficult childhood.

I have never completely recovered from the bullying in my childhood. While I have been able to overcome my fear of going out alone, I am still very shy and have had no friends to speak of since primary school. My interests and current projects are kept to myself and I’m more likely to accept something as given, or just avoid it altogether, rather than argue.

It gets easier, slowly.