Monday, September 30, 2013

"Different.....Not Less" Review

 
We'd had a particularly difficult week last month, one that included a meeting with my son's teachers. To say that I came away from that meeting discouraged and disheartened would be an understatement. Heartbroken comes much closer.

An email from Future Horizons asking if I would like to review Temple Grandin's new book couldn't have come at a better time. The subtitle of Different, Not Less by Temple Grandin is apt: "Inspiring stories of achievement and successful employment from adults with Autism, Asperger's and ADHD."

In the foreword, Dr. Tony Attwood makes this claim: "This book has antidepressant qualities to rival those of medication." And he's totally right!

I sat there reading this book, inhaling it really, alternately smiling and crying, all the while feeling like there IS hope. There really, really is.

Grandin has done an excellent job in selecting the stories to highlight in this book. She chose an incredibly varied group of adults with a wide range of experiences. The book includes accounts from a physician, a real estate agent, a mother, and professor among many others, all adults who have found their way in a world that is not always particularly accommodating to those whose brains are wired differently.

And they don't sugar coat things. It is an honest assessment of the challenges and successes that they have had over the years from childhood on.

I highly recommend Different, Not Less to anyone who has Asperger's, Autism, or ADHD or anyone who works with individuals that do. And I recommend it to anyone looking for some inspiration, because you are sure to find it.

 If you decide to buy this book at Future Horizons, use the promotional code PH when checking out, you'll get an additional 15% off and free shipping. Can't beat that, right?

Also, we have a new copy of this book in our lending library here at Family Matters!  If you live in Illinois and would like to borrow this book, please contact us at 866-436-7842.  Or you can visit our website and request a copy yourself, here.http://www.fmptic.org/library 

We provide a self-addressed, stamped envelope for easy return!  And you get the book for a month, for free!

Thursday, September 26, 2013

The Worry

Recent conversation with friend:

Me: I've been really worried about Danny making friends.

Friend: I know what you mean. I worry about my kids and their friends, too.

Me: But here's the thing: Danny doesn't actually have any friends.

Friend: Sure he does! What about the kids at church?

Me: Uh, no, they're not really his friends. He never talks about them and they aren't especially nice to him. I worry that the kids are making fun of him. I heard one kid say.....

Friend: (interrupting) Yeah. All moms worry about that, right? I mean, just the other day, someone teased my daughter about a boy who likes her.

Me: Hmmmm... yeah, but that's not really the same as being called a "retard" by classmates, is it?

Friend: Well, I know what you mean. No one likes to hear their kid being teased.

Me: (hitting head against wall) Yeah, well, I have to run. Thanks for talking (sarcastically).


All mothers worry about their children's futures. We worry about drugs and school and bullying. We worry about their health and self-esteem, their future careers and romantic lives.

When you have a kid with autism or any other special need, however, the worrying takes on epic proportions, mostly because these fears are so much more likely to come true than with NT kids. I don't care what a mom of neurotypical kids says; it is NOT the same thing.

My son has high functioning autism, and I worry about his future to the point of obsession. Now, of course I worry about my younger daughter and son. I want them to be happy and successful adults, too, but with Danny, I'm really scared. Scared that he might turn to drugs to deal with his social struggles or in order to fit in. Scared he may someday battle depression because he is so different and -everything--everything!-- seems to be a bigger struggle for him.

I'm terrified of the day when he realizes people look at him strangely. I worry he won't be able to hold a job or have a romantic relationship (if he wants one). Hell, I'm scared he won't ever have a truly good friend.

I worry that someday all his struggles with sensory stimuli, learning and just daily living will prove to be too much for him, that he'll just want to give up on it all, because life is just so damn hard for him.

And I worry that someday my daughter will realize that her brother is different and she won't want him around. That she'll be embarrassed of him and his differences.

This worry I have for my son who has autism is fundamentally different than the worry I harbor for my younger kids. OF COURSE, I don't want any of them to be bullied, but in Danny's case, it's much more likely to happen. In fact, I've already witnessed episodes. Kids are cruel. We all know that, and many kids are the victims of bullying and teasing. I know I was. But, the thing about kids (and really, many adults) is that they are uncomfortable with people who are different. Kids who are different are very likely to get made fun of; it's the law of the playground.

I want my other kids to go to college and get jobs, and sure, I know they could end up on welfare as easily as the next kid. But Danny? Danny who struggles with processing directions, who gets stressed so easily, who offends people sometimes by his bluntness? Yeah, SO much more likely to have problems in the workforce or even in interviews. And he is such a homebody, it isn't such a stretch to imagine him living in my basement, playing video games into his 40s.

As parents we will always worry about our kids, but to say that the "normal" worry is the same as this is so insulting. It's like me telling a friend whose kid has some disease that we all worry about our kids' health, it's no big deal.

I know I have to get a grip on these worries, and mostly I have. I work really hard to get Danny the help he needs to learn social skills, to succeed in school, to manage his stress. And I try not to think about the future too much, because when I do, it all seems so incredibly overwhelming and scary.

And the last thing I need--any of us needs--is someone invalidating or minimizing those fears. Because as much as you try to gloss over them or make them seem less significant, they are still there. And they always will be.

Tuesday, September 24, 2013

Bittersweet

The other night, I had an unusually long conversation with my son, Danny who has autism.  In all his 8 years, we have rarely had a lengthy talk, which has been a source of grief for me.  I have always wondered what he is feeling and thinking;  I want to understand where he is coming from so I can help him and so I can know him better.

When Danny was a toddler, he didn't speak.  In fact, that was my first clue that something was different about him.  Sure, he babbled, but at 2, he still hadn't uttered a single word.  When he did expand his vocabulary, every word was a hard-earned achievement.  We practiced and modeled speech for Danny hours every single day.  I dreamed about the day that my son would be able to communicate with me.

Now that he's older, Danny's speech is much more advanced, but still he rarely shares his feelings with me. He'll talk readily about certain subjects, like LEGO and Angry Birds, his two recent obsessions, but I don't often get much out of him about how his day was or how he's feeling.  And when he is experiencing a strong emotion, he has enormous difficulty communicating. He often gets tongue-tied or uses language inappropriately, which makes it almost impossible to decipher his meaning.  And he gets really annoyed if I grill him with too many questions.

In recent months, we have been making some headway; he has been telling me how he feels about things and offering up information to me like so many bits of treasure.  One day, Danny excitedly shared that his teacher had made Bruno's cake from a story they had read in class.  Another day, he declared that he wanted to buy his teacher a Valentine's Day present and listed possible gift ideas (LEGO sets were at the top of the list).  In preparation for a field trip, Dan remembered to inform me that he needed to wear a red shirt.

This breakthrough excites me so much, I can hardly stand it. I feel like I am getting a glimpse into a different side of my boy.  Like I am privy to some of his private thoughts.  All these years, I have been waiting for Danny to let me into his head a bit, to share his thoughts and feelings.  I have been imagining and daydreaming about what it would be like to understand my son better, to be allowed into his life more.  And it has been amazing.  I feel like I am bonding with him in a way that I never have before.  And this gives me hope for him and his ability to self-advocate.  I can tell he feels better too; he's less frustrated and seems proud when he can articulate his feelings.

So, why, why am I fighting back tears?  Why are some of my conversations with him breaking my heart?  Because along with his joys, Danny has also been sharing his disappointments, his fears, his struggles.

Often in the last few months, Danny has been coming home from school telling me how much he missed me all day long and that he hates being away from me that long.  Last week, Danny told me that he has no friends at school and that making friends is really, really hard.

And just last night, we had that long conversation I mentioned.  Danny explained to me in halting terms why he hates school, how everyone talks too much, how it just overwhelms him and gives him headaches, and how he can't really understand what is expected of him.  And he topped it off with this: "Mom, I am just no good at listening to directions.  I'm terrible at it.  I try.  I try my best, but I'm bad at it, and it's all my fault!"

All those times I wished and prayed that Danny could communicate better, I never considered that what he had to say would be very difficult to hear.  I always thought that I would be able to help him more if he could adequately express himself.  Somehow, mixed in with the immense pride at how hard he's worked and how far he's come, I also feel sadness.


- - - - - - - - - - - - - - -

Patty is a stay-at-home mom to three wonderful kids, all of whom have Sensory Processing Disorder.  Her oldest son is also on the autism spectrum.  She is a freelance writer and started a LEGO Social Club for kids on the spectrum last year.  She blogs at www.pancakesgoneawry.blogspot.com

Thursday, September 19, 2013

Role Model

 



Imagine working in a job everyday where you are constantly stressed.  And when I say "stressed" I mean levels of stress that give you headaches.  Every. Single. Day.

How would you react if you were in a job where no one really explained what you were supposed to do?  And the directions kept changing, so even when you think you've got it, you're wrong.

Everyone who instructs you talks way too fast for you to understand, and then they get annoyed when you're confused.  You often feel as if your boss and coworkers blame you for not trying hard enough, because they say things like, "You need  to try harder" or "You didn't listen to directions"  or most commonly, "You need to FOCUS!  Why aren't you listening?"  when really you are, but it's like trying to decipher a foreign language.

And even when someone tries to help you understand, you feel singled out.  Sometimes they even make you miss your coffee break because you need to catch up on your work.  And boy, would that coffee break have helped you focus more.

The atmosphere of your office is super distracting too, so that does nothing to help you focus.  There's really bright lighting that hurts your eyes, annoying Muzak is playing everywhere and you cannot tune it out.  Someone always brings a nasty smelling tuna sandwich whose odor permeates the entire office.   There are notes and posters and brightly colored pictures and memos hanging on every square inch of wall space and it hurts your eyes to look at.

Then, imagine having no friends at all among your coworkers.  They all think you're kind of an odd duck, and you really don't get the rules of their social group. You would like their acceptance, but have no idea how to gain it.   No one in the entire office has a clue what you are going through.

This is what I imagine a day at school is like for my son, Danny, who has autism.

And this is why Danny is my hero.

When I hear people talk about role models, many people come to mind: Temple Grandin, Gandhi, Mother Teresa and Amelia Earhart.  But after seeing Dictionary.com's definition of role model--a person whose behavior, example, or success is or can be emulated by others--I thought of someone else. Someone who I admire greatly.  Someone who, despite great personal struggle, continues to progress and improve.

Danny.

Because even though school is an amazingly stressful place for my son, he never gives up.  Danny has struggled to attain almost every major milestone in his life. I can only think of a handful that occurred naturally.  Every other one took hours of therapy and instruction and practice.  Things that come relatively easily to most kids take much work for Danny---learning to speak, to use the bathroom, learning to count money and read a book are just a few examples.

And yet, despite all the adversity, Danny has thrived.  He has learned and grown and succeeded because of his hard work and determination.  And because he never gives up. Ever.

But what's even more incredible about my charming son is that he has not let these struggles crush his spirit of adventure and curiosity.  Danny lives life to the fullest. He's exuberant and doesn't care if that makes him uncool in some people's eyes. He embraces experiences with a delightful sense of adventure, which makes being around him so much fun.

Most people look at my son and see a kid who's quirky, different, even weird. But those people don't know anything about who my son really is. He is strong, courageous, and determined. He is adventurous, ebullient, and passionate.

And that is why Danny is the coolest kid I know. And this is why I want to be just like him.

Tuesday, September 17, 2013

How To Make Group Work Easier For Autistic Kids

by Bec Oakley

originally posted on Snagglebox.com




Imagine this...
It’s your first week at a new job and you’re sitting in a meeting with a bunch of coworkers you barely know. Everyone is talking at once and you can’t make sense of any of it. They’re leaning out of their chairs, discussing something in the middle of the table that you can’t see, and the meeting room is small - bodies are pressed uncomfortably close to yours and the noise in the room is deafening. Your boss walks past and shouts “Join in!” How? You have no idea what you’re supposed to be doing, or who to ask. Suddenly someone says “Let’s get to work” and the group disbands, leaving you to feel overwhelmed and confused about what just happened.

This is how classroom group work can feel for a lot of autistic kids.

Working in a team can be really hard work - it’s emotionally, physically and mentally draining for some, downright scary for others. And the effects of this stress and exhaustion can last much longer than one lesson, it can impact learning for the rest of the day or even all week. For some kids who find group work daunting, even the mere possibility that they’ll have to do it at some point can increase their anxiety about being at school.

The stress of group work is usually attributed to “not wanting to interact”, but this is just a small part of why this kind of classroom activity can be particularly challenging or unappealing for these kids. So let’s look at some of the other reasons.


WHY GROUP WORK CAN BE TOUGH

Unpredictability

Group work is very rarely announced in advance, and suddenly hearing the dreaded words “Find a partner” can trigger anxiety or panic before the task has even begun. It’s difficult to predict ahead of time who will be in your group, and team mates usually change with every activity. The lack of control over the task or its outcome can be incredibly stressful for kids who need routine, or for those who have set high standards of perfection for their own work.


Transitions

Moving in and out of teams requires shifts in attention, environment and sensory input which can be uncomfortable, unsettling or demanding for some kids. They have to disengage from what they’re doing and adjust to a flood of new information, and they might find themselves without the cues and props they usually use to cope (the defined space of their desk that shows them where they should sit, the noise buffering effect of the carpet beneath their chair).


Group selection

Forming your own group is a complex task which can be really intimidating for a lot of kids.
First you have to find the people you know, which can be tricky with everyone moving around the room (especially for kids who have trouble recognizing others). Once you’ve identified potential partners you have to act quickly, approaching them in the right way with the right words... and a hell of a lot of confidence that you’re not going to be rejected. This places huge demands on language skills, social understanding and executive functions like planning and attention, which are all areas that can be challenging for autistic kids.

To continue reading, click here.....
If you would like more information about autism, please contact Family Matters at 866-436-7842.

Tuesday, September 10, 2013

fitting in vs blending in

Written by Dani G.
Originally posted at "I'm Just That Way and That's Just Me"




"'Cause I, I once heard

that you gotta learn
how to blend in to this mess
Where nothin's hard
nothin's precious
and nothin's smooth or flawless"

-Wallflowers


It's never been very easy for me to blend in. Plus, I've never totally wanted to blend in with the rest. I like being different. But I'd like if my difference was my hair color, tattoos (sorry dad), clothes, or even vernacular. Something harmless. I guess I want to fit in, but not blend in. Make sense? It totally does to me.
I'm beginning to get a little nervous about putting my atypical kid into a typical school with typical kids. I sat down with Dr. G last week to talk about it and he reminded me of something that I've always been aware of, but I think I'm just starting to really FEEL it.

Simply put, it's that everybody's got something. Even the seemingly typical kids have something going on. I know that's true, but it's hard to really feel when I'm busy comparing my insides to someone else's outsides. My fears are that she'll never fit in. She'll never have friends. The only kids who will play with her are the kids of my friends, who won't have the heart to say no to my requests. I'm already there. As a pretty social person, that's tough to see. I recently read somewhere that a woman in the same position decided to stop trying to force play dates with her kid's peers. Rather, she'll just have to make do with those friends who won't refuse. I get it. I don't like it, but I get it. I really do need to work on the social piece. That's the whole point of putting her into this "normal" kid school. The technical term is inclusion......


To read more, click here.....

Tuesday, September 3, 2013

"The Gift of ADHD Activity Book"

 
 
 
 
So much depends on how you look at things: Are you a glass-half-empty person, or do you discover advantages where other people find only weaknesses? When it comes to raising healthy, happy kids, positive encouragement and support can work miracles where attempts to change and control create frustration and resentment. In her first book, The Gift of ADHD, psychologist Lara Honos-Webb offers a positive, strengths-affirming new way to look at kids who present behaviors associated with attention-deficit / hyperactivity disorder (ADHD). Instead of struggling to “tame” your easily distracted child, she shows you how to appreciate your child’s creativity, sensitivity, and passion for living. In this book, she develops the ideas from The Gift of ADHD into 101 simple and engaging activities you can use to develop your child’s unique strengths.

The chapters of the book explore ways you can shift your thinking about different aspects of ADHD. Each starts with a short discussion of how a particular challenge can be reconceived as a strength. After that, the book dives into fun and positive activities you and your child can do together—often in just a few minutes—to help develop and reinforce the gifts of ADHD.
GIVEAWAY!!!!

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***Due to shipping expenses, this giveaway is only for residents of the US.

This giveaway ends at midnight on Wednesday, August 28th!