My Journey in Learning about Aspergers

Looking back.....

Often I forget the past and how far Chaz has come so I'll look back on old post that are in my family blog before I created this one.  I tagged some posts "Aspergers Syndrome" so I could link it here. Forgive me if some of my writing is not accurate in information.  I was very new to the term Aspergers and knew very little about it.  I would love to share my journey with you.

Click HERE to read posts tagged with Aspergers Syndrome from Chaz's early days of being diagnosed.

When Aspergers Kids Long for Friendship

Saying goodbye to his friends in the special needs classroom.
This was the last time he truly ever felt accepted by his peers.

Some days I think my son's High Functioning Aspergers is my imagination.  That's thing about it.  It's not always super obvious.  There will be really great days where I think "Are people right?  Have I just ruined my son's life by pinning this on him?"  Then there will be really, really bad days where I'm shocked by his immaturity, screaming, tantrums, and his emotional breakdowns.  He's 10 years old and my 9 year old son acts waaaaay older than him.  Even my 7 year old acts older.  Sometimes I wake up to him crying about a video game and pacing.  I will have to take the controllers and put them up till he calms down.  It usually takes about an hour.

I'm in the middle of reading Lonely Girl, Gracious God and it makes me tear up almost every single chapter.  It's about a mother's journey of raising a daughter with Autism but not finding out exactly what was going on till years later.  The feelings fear, doubt, disbelief, loneliness, sadness.  Although what she has went through is 100 times harder than what I've experienced, I guess I've cried so much reading it because on some level I can understand. You JUST want the best for your kid.  A normal life with good possibilities and stability.  Is that too much to ask for?

In one chapter of the book she talks about her daughter's loneliness and wanting friends.  That part made me cry because I know that's how Chaz feels at times.  Thank God he has siblings to play with him and they are all around his age because I had them pretty close together.  Recently Chaz told me that he doesn't want to be in a mainstream classroom anymore.  He wants to be in a special needs classroom. "What??" was my reply.  WHY?  Chaz went on to tell me that he wants friends.  He has NO friends at all.  Every time he passes by the special needs classroom all the kids know him and shout out his name.  Chaz LOVES it.  That's what he longs for is just acceptance and friendship.  I'm going to tell him yes even though I was so happy my son was in a mainstream classroom the last few years.  I guess my heart breaks a little (a lot) because I know that it's one thing to be in special needs when you're in Kindergarten.  It's another in 5th grade.  Kids are more aware of the differences.  

Chaz wants friendship so special needs classroom it'll be.  Thankfully it's with the higher functioning so Chaz won't regress.  He tends to copy behavior so it's important that he's with kids at his level.

The Problem with Video Game Obsession

Since getting the Xbox 360 Kinect, Chaz has been really struggling again with his obsession.  The good thing is that he has to share it with his other siblings.  But when it's not his turn, he walks in circles till he plays again.  H's back to being reduced to tears within seconds.  He's having trouble sleeping again at night and wakesup with the light to get a chance to see his game again.

Sigh.

Watching that is hard for me.  I encourage him constantly to play with his siblings but all he can talk about is his game when he is with them.  Video games is his one obsession and to the point that he won't eat.  I know it's summer time and his schedule is out of wack.  Once school starts he'll have to be physically away from it.

Don't get me wrong, I don't keep the games on all day but he does have other siblings that want a turn if they can pry it from his tight hands.  Or I'll make everyone get out of the house.  Like walk the mall.  But then when we're there I can see Chaz's hands wringing and the only thing he can talk about is games. Sometimes we have to tell him that we need a break from talking about games and so it's hard for him to make conversation.

Stuff like this makes me sad.  It's SO hot here in the summer time so I can't tell them to all go play outside. We stay indoors when the heat gets unsafe. Gosh, when I was little I could ride my bike all over the neighborhood and even ride over to the community pool. These days I can't do that so my kids are stuck inside more often.  I love having my kids home with me but something they get so incredibly bored and games help relieve the boredom.

Do video games affect your Aspergers or Adhd child in this way?

Have you voted?  Clicking
on the badge is a vote!  :D

Do Video Games Worsen Symptoms of Aspergers Syndrome?

I know video games in general can be an obsession with kids.  I was doing a little research on the subject. One site said there wasn't a link with Aspergers.  Another site did mention something really interesting.  This is what they said.

Unhealthy Addiction?
The more time a person spends playing video games, researchers found, the more likely they are to show three specific traits usually associated with Asperger's syndrome: neuroticism and a lack of extraversion and agreeableness.  Read more....


How much is too much for any kid?  Aspergers kids?  I do notice Chaz is extremely emotional when he plays too much video games. It is hard in the summer here because it gets so incredibly hot that it's unsafe to play outside.  That means we get stuck indoors quite a lot.  My kids tend to drift towards the video game rooms more than anything else.

2 questions I have:

• Do you think video games worsen the symptoms of Aspergers Syndrome?

• Have you created any sort of schedule for you child on how often he/she plays?  Do you let them just play whenever?

Starting Sensory Therapy Book Review

Can order at Future Horizons.

Starting Sensory Therapy

By Bonnie Arnwine

Binding: Paperback
Pages: 132

$19.95

Over 140 fun activities for kids with sensory issues.  This can be used for the home and for the classroom.  The activities in this book exercise a child's seven sensory "muscles" -the visual, auditory, tactile, olfactory, oral, vestibular, and proprioceptive senses.  

What a GREAT book with so many fun activities. What is neat about it is that kids are having fun WHILE exercising their senses.  

The first chapter explains what Sensory Processing Disorder (SPD) is.  We have five senses:

*Vision

*Hearing

*Touch

*Smell

*Taste

Two Senses we may not be familiar with are:

*Vestibular

*Proprioceptive

Example: What is a Sensory Modulation Disorder?

It causes a person's body to misinterpret the nature and intensity of sensory information he or she receives from the environment.  One or more of a person's senses may be over- or underresponsive to sensory information.  This can also cause a person to crave or seek our sensory stimulation.

The first chapter is dedicated to helping you understand the disorder and even includes a list of codes to take to your insurance to see what they cover for therapy!  How simple is that?  It also lets you know what some common sensory IEP services include. I can't tell you though. You'll have to get the book. :D

The rest of the book is dedicated to providing your own therapy right at home with simple and everyday items we have right here.  

Exercises are: Tactile Activities, No-Cook Cooking, Fun Feely Stuff, Gross-Motor Activities, Movement Songs, Activities for Bilateral Motor Coordination, Visual Activities, Oral-Motor Activities, and more!

Temple Grandin: The Movie

I finally got a chance to see the movie about Temple Grandin.  All I can say is WOW!!!  I'm impressed!  Sure there are tough things with having Aspergers but this movie helped me see what a gift it can be!  I truly loved the movie and if you get a chance, definitely see it.  I'll include a trailer if you haven't heard anything about it.

I'm just so impressed with not only her mom but in the fact that Temple Grandin just kept opening new doors.  Allowing herself to be uncomfortable to open another door, and another, and another.  Instead of letting Aspergers keep her in the comforts of her home, she went out and gave a gift to the world.

Celebrating 32 Years

...  of still living and breathing.  Still loving each and every day.  

Even the ones that had tears.  

The ones with the mop in my hands. 

Even the days where my sweat drips doing loads of laundry

The ones in the counselors office

The days I scratch my head with no answers

Even the ones where no one calls

Even on birthdays forgotten

I love each and every day 

because I'm still breathing

and that means I get to touch a flower

watch a butterfly flitter about

I still get to kiss my kids goodnight

and repeat each and every morning

I get to celebrate each step forward

whether or not it came after two steps back

I love each and every day

Because someday there will be no tomorrow

I'll take the tears, the sobs, the pain, the hard work

if it means I can have the laughter, pitter patter of little feet

and a kiss from my husband each day.  

Thank you, Lord, for each and every day

of the 32 years you have given me

You gave me the gift of Life

and I'll take each and every day with a smile

How Can I Help My Aspergers Stepson?

Question:
My stepson is 26 yrs old, he still lives at home with me and his dad.He is very odd, and I have been looking lots of things up and Ive come to conclusion he has aspergers. His father said at the age of 3, he became very withdrawn, he took him to drs and not one could diagnose him. His son did go to college, and did get a degree in programing computers. He has a good job. But socially and other ways he is like a child. He is very pleasant and seems to have a good sense of humor, smiling at jokes etc. I cant see him ever moving out on his own, although he makes and has plenty of money. He rarely talks except when asked a question, and is very unmotivated at home. His Dad just lets it all go, I think he has given up on him. What happens to people like him? What can I do help? Can we tell his son what he has? Please help-Cindy


My thoughts:

Oh Cindy, I love your question and I want to answer with a book.  John Elder Robinson wrote a book about his experience.  He grew up with Aspergers and to this day it affects him but he's learned how to work around it.  It think it would really help.  I read it for my own son to see what life will be like for him as he gets older and what I can do to help him.  You can literally get this book for $2 if you just want to buy a used one.  


I hope this helps.  This book answers so many of your questions.  Questions I asked too and it's great to hear from someone with Aspergers Syndrome.  John did well but he also really tried to work on his communication skills.  He even found a job he is very good at.  He is married to a woman that truly understands him and has really been there for him. 


Thank you for writing me and I hope this helps. He is so lucky to have you in his life.  :)

Mom Confesses 'Why I Don't Like My Child' in Magazine

Every now and then I run into an interesting article and want to share to get your thoughts on it.  Experiences?  I'm not trying to judge this lady.  Is it possible she suffered Post Partum Depression?  

It might be the most damning thing a mother can utter: "I've never liked my child."

But in a column in the current issue of Redbook magazine, a woman, writing under the assumed name of Jennifer Rabiner, says she was "basically repelled by my own child."

A mother of two girls, Rabiner, 41, continued to keep her identity hidden in an interview with "Today."

"I thought that she would be vivacious and smart and loving and make intense eye contact," she tells the show of her first daughter, called "Sophie" in the magazine. "That was just not what happened."

Rabiner tells "Today" Sophie was a difficult baby.

"She slept very poorly. She ate very poorly. She did not make eye contact," she tells the show. "She did not meet the milestones that all the books that I read indicated that she should be making at the various ages."

Not every baby develops at the same rate, but Rabiner tells "Today" she doesn't think her expectations were too high.

"I don't think it's too high an expectation to expect your child to meet your milestones -- her developmental milestones," she tells the show. "It's not too high an expectation to expect her to sleep, to expect her to eat, to expect her to interact." (Full article HERE)


I'm not sure what to think about this article.  I mean, I understand the frustration.  A kid not meeting milestones, not sleeping well, causing me a lot more work than I ever thought parenting required.  


Chaz did not potty train till 4 years old, didn't look me in the eye, didn't sleep well and still doesn't, had tummy issues, major eczema, etc.  


However, I loved him like crazy and he was still bone of my bone and flesh of my flesh.  He's my boy.  He's still hard work for me 10 years later but I never favored any of my other kids over him.  Could it have been a pride issue?  I know moms tend to compare their kids to others and love to boast milestones.  That can be hard and I got moms harassing me about Chaz too.  I've had to learn that each kid is different and some even wildly different.  I guess I worry that some day that little girl will read this article about what her mom said.  What will she think?  

Summer Routine for Aspergers

So far so good with Chaz in the summer time with a minimal routine.  Compared to school our routine is simpler.  We only have:

• Lunch at noon
• Chores at 1pm
• Dinner at 6pm
• Chores at 7pm
• Bedtime 9pm

Chaz has a mommy like me who is not a schedule type person so for me, having any schedule is a huge deal. That's actually a huge improvement.  It's mostly playtime in between all that for them.  We do plan to visit water parks at least once a week so that'll help shake up any boredom kids can get.  

Chores per kid are color coded

I know routines are very important to Aspergers kids and that of course depends on the kid.  Chaz absolutely loved her teacher for her down to the minute routine.  As much as I would love to be like that, I'd probably panic.  However, I have established a minimal routine. The routine I showed you is for my kids, not for myself.  I have my own cleaning schedule that goes in between all that. So, I shouldn't be so had on myself about it.  Ha!

Heck, most people think homemakers are just watching TV and eating Bon Bons.  Not me!  I absolutely love hanging out with my kids, cooking, and having adventures together, homeschooling my daughter.  Chaz has 5 siblings so it's not usually quiet around here.  When the noise gets to be a bit much, Chaz just puts on his earmuffs and he's good.  Chaz is pacing to get my computer so I'd better hand it over before he burns a line in the rug.  :D

Before I leave, what kind of summer routine do you guys have?  How does the summer and no school affect your Aspergers child?

All About Temple Grandin

All about Temple Grandin and what she does

This is a neat video.  I'm really curious about Temple Grandin because she's helped so many people understand Asperger Syndrome.  I can't wait to see that movie that was made about her life.

Phoenix Autism/Asperger's Syndrome SuperConference

POSTPONED:  Till November 10th and 11th

Guess what?  I will be traveling to attend the Phoenix Autism/Asperger's Syndrome SuperConference July 7-8, 2011.  I'm super excited and I can't wait to share my experience with you.  Better yet, if you live somewhat the proximity of the conference, feel free to register to attend! If not, find which city and dates are closest to your area.

Visit Future Horizons to find out more!  Conference information is at the top of the website.

Speakers and topics will be:

"UNWRITTEN RULES OF SOCIAL RELATIONSHIPS"

Sean Barron is a very interesting and intelligent young man who has faced the challenge of autism. He and his mother wrote an insightful book on their lives together. There’s a Boy in Herehas won many accolades for offering the unique perspectives of two people who look at the same world, but see and feel entirely different things.
Mr. Barron has progressed to the point that it is difficult to even realize that he once was truly impacted by autism /Asperger’s Syndrome. He is now a freelance writer, lives independently, and co-authored Unwritten Rules of Social Relationships with Dr. Temple Grandin. Sean is a graduate of Youngstown State University, and works as a reporter for the Youngstown Vindicator. He’s pursuing a second degree in journalism.

By attending, participants can:

How autism affects social awareness, social thinking and social understanding

The 10 unwritten rules of social relationships  

The difference between situation-based and people-based social rules

Behavior and self-control strategies 

Effective strategies his parents and educators taught him about social conventions such as honesty, manners, and dealing with making mistakes  

The social challenges of friendships and relationships 

"THE NEXT GENERATION OF SOCIAL STORIESTM"

Carol Gray wrote the first Social StoryTM in the fall of 1990, and by early 1991 introduced the first guidelines of this fascinating educational intervention. Since then, Social StoriesTMhave earned widespread international popularity and interest. Increasingly they are the focus of formal research. In their short history, Social StoriesTM have earned the respect of professionals and the affection of parents of those on the autism spectrum. This presentation looks at Social StoriesTM from a variety of perspectives. Using lecture, demonstration, and activities, participants will enjoy a first-hand exploration of Social StoriesTM and the ever-increasing research that supports their use.

By attending participants can:

• How Social StoriesTM can improve behavioral and social skills 
• The history of the approach
• The formal research and surprising discoveries that help us understand how Social StoriesTM work so well
• Seven ideas to tailor Social StoriesTM to systematically address the core deficits in autism spectrum disorders

"THE OUT-OF-SYNC CHILD"

Carol Kranowitz offers sensory strategies and activities that are applauded not only in the United States but around the world; over 500,000 copies of her book, The Out-of-Sync Child, have been sold. Ms. Kranowitz holds an M.A. in Education and Human Development and until recently was a music and drama teacher. She has developed a purposeful curriculum that integrates sensory-motor activities into the school day. 

 By attending, participants can: 

• Identify and describe the six types of SPD and how they can affect the daily lives of children
• Recognize co-existing problems (e.g., visual, auditory, eating, sleeping, and emotional difficulties)
• Discuss several research studies by the world's top investigators
• Demonstrate "In-Sync" activities, specifically designed to engage various sensory systems and thereby improve learning and regulate behavior
• And more!

"NO MORE MELTDOWNS"

Having earned his MA and Ph.D. in clinical psychology from the University of Albany, Dr. Jed Baker is a behavioral consultant for several New Jersey school districts where, nearly two decades ago, he organized a group to help children with social communication problems. Dr. Baker’s dynamic and comprehensive presentation is extremely valuable to all family members and professionals working with individuals with autism spectrum disorders, attention deficit disorders, learning disabilities, mood and anxiety disorders, and other issues that impact social-emotional functioning. His work has been featured on ABC News and Nightline!
 By attending, participants can:

• Build an individual's social skills in crucial areas such as conversation, conflict resolution, emotion management, employment, dating, etc.
• Develop an effective behavior plan
• Manage and prevent meltdowns
• Help create peer acceptance
• Assess social skills of individuals or groups
• And more! 

OT In the Home DVD for Sensory Processing Disorder

Occupational Therapy in the Home

Helping kids be their best

*Regulate emotions

*Improve gross & fine motor skills

*Physical & Cognitive strengthening

Can be purchased at
Future Horizons
$35.00
running time: 90 minutes

Not everyone can afford to take their kid to therapy every week.  What then for parents that are interested and learning how to provide therapy at home?  Where to start?  This video is extensive in showing you how.  I LOVE IT!

*Choosing their clothes

*Hygiene

*Making responsibility charts

*Making visual schedules

*Toilet training

*Oral/motor strengthening

*Weighted vests and

*Indoor swings and their value

*Fine motor skills

and more.....

There is soooo much more in this video!  I only gave you idea of what the beginning covers.  It not only gives you ways provide occupational therapy in your home, but explains in detail what to do and why it helps them.  It's an amazing video.  I can't believe what a valuable tool this is in providing therapy for your child at home.  

Chapter titles to give you an idea are:

1. Starting the day

2. Individual Sensory Needs

3. Fine motor

4. Homework

5. Gross motor

6. Organization of behavior

7. Dinner time

Before, during, and after

8. Bedtime

9. Aquatic therapy

10. Storytime

11. Creating a playroom

(Paint, lighting, flooring, organization)

Aspergers and Affection

Even when Chaz was a toddler he pushed away affection.  Did we give up and never show him any or hug him?  Of course not.  We tried every day even if it was only for a few seconds.  Over the years, Chaz has become more and more affectionate but it definitely didn't happen overnight.  He used to fight against being being held, even as a little baby.  Well, he was born in a snuggly family so it was something he had to get used to.  lol. I don't know how it'll be for him growing up or when he marries.  Will he show affection without being asked?  I don't know.  He doesn't come up and hug us ever, we have to always go to him.

Chaz on left with his brother's arm around him

I did a search and found this interesting article:

"Significant others and family members of people with Asperger's are often more prone to depression than the general population because people with Asperger's may not spontaneously show affection and can be very literal and hard to communicate with in an emotional way. However, not showing affection (or not doing so in conventional societally-acceptable ways) does not necessarily mean that he or she does not feel it. Understanding this can lead the significant other to feel less rejected and be more understanding. There are usually ways to work around the problems, such as being more explicit about one's needs. For instance, when describing emotions, it can be helpful to be direct and to avoid vague terms such as "upset" when the emotion being described is anger. It is often effective to lay out in clear language what the problem is and to ask the partner with Asperger's to describe what emotions are being felt or ask why a certain emotion was being felt. It is very helpful if the family member or significant other reads as much as he or she can about Asperger’s syndrome and any comorbid disorders. In a minority of situations the opposite problem occurs; the person with Asperger's is unusually affectionate to significant others and misses or misinterprets signals from the other partner, causing the partner to get annoyed and leave the person with Asperger syndrome feeling depressed and alone."

http://www.k12academics.com/disorders-disabilities/asperger-syndrome/living-aspergers

*Then I found this really interesting discussion happening  HERE.  The discussion is about being "Raised by Aspergers Parents".