Social Stories and Movies

Using social stories and movies can help in teaching social situations and feelings. When you have a child who is a literal thinker, they don't view situations the same way as others. For example if someone tells them to say or do something they don't view it as something they did or said. They may argue that they didn't say it, the other person did. They may not realize the guilt by association rule. Using Social Stories or movies can visually show them incidents they may not be able to process verbally. It can also aid in teaching empathy and feelings. Many times my child understands when she is being mistreated but not that others have feelings. This is where those old Brady Bunch episodes come in handy. Marcia always has some friendship dilemma and Jan has run through every emotion. It has been said that repetition is key to obtaining these skills. Although we experience new situations that we may not have been prepared for, we are EXPERIENCING NEW SITUATIONS. After all, life is about learning and growing. We climb hills, stumble and find a new route to the top.

Temple Grandin, PhD -- Conference

Attended the Temple Grandin conference today in Crystal Lake. Temple is quite an incredible and motivating person. It was fascinating to listen to her talk about having Autism/Asperger's. Here are my notes. She explained sensory issues and how some people with autism have trouble with fluorescent lighting, high pitch sounds, and of course touch. Those with BWP or Brains with problems (her name)process slow. When they are tired everything gets worse. Some people on the spectrum cannot hear hard consonant sounds. You need to break the word down so they hear each sound and then make sure you say the whole word. Hearing may also fade in and out. She compared this to a bad phone connection. For those of you teaching children to speak, use flash cards with the picture and word on the front together. They need the visual with the word at the same time. Many of those on the spectrum cannot screen out rapid motion and find it extremely distracting. (A lot of movement around them -- people shuffling paper, standing up and sitting down etc.)

Temple suggests gently pushing our children but not too much to initiate shut-down.
She feels there are different forms of autistic thinkers. 1) Visual Thinkers who see things in pictures, usually good in Art. Their thoughts are photo realistic pictures (movies) in their head. 2) Pattern Thinkers are usually gifted in Math and Music and 3) The Verbal Facts person they are usually poor at drawing (Art) but wonderful with facts, history etc. My daughter can tell you about every cell phone company and which phones they produce. Also, what feature each phone has. I believe she would fall into the Verbal Fact category. Although she loves to sing and dance and can mimic how people sing and dance just by watching and/or listening. Could possibly be a cross between a few.

Some modifications she shared for those with sensitivity to light was using a laptop computer instead of a regular size one. Using gray, tan or light pastel colored paper instead of bright white. Temple said they have seen writing organization improvements when light paper was used instead of white. She also mentioned Irlen lenses (pale colored lenses).

Temple describes Autism or BWP as abnormal circuits in the brain. The more severe the autism the more circuit problems. Brain connections didn't fully develop. In some high-functioning people certain connections are more developed and/or over developed. Those on the Spectrum have brains which go toward detail, this is why they notice details that they rest of us don't notice.

Skills are definitely uneven, so make sure you build on their strengths not weaknesses. Those with autism keep developing as time goes on, so keep exposing them to new and interesting information. FILL THE DATABASE UP!

Many suffer from feelings of perfectionism. They need to be taught levels of quality to help them to understand perfectionism. Teach them that there are different levels and they don't always have to achieve the highest level. Make sure you use examples when teaching.

A few other suggestions she gave was increase exercise to help calm the child plus Omega 3(fish oil). Deep pressure opens up channels. Good to use deep pressure, weighted vests, ball chairs for 20 minutes then stop for 30 minutes. Don't continue without a break.

Inappropriate behavior should not be scolded but corrected when it occurs offering the appropriate behavior. Example: Child reaches across the table for bowl, say the appropriate thing to do next time is ask (so in so) to pass. Make sure you always offer the correct way to do things when disciplining (teach correct social skills). Teach values....today's society (movies, TV) does not always show a good value system....it's up to us to teach this. Explain why behavior is rude and be consistent across the board with discipline.

Other information: Their working memory is terrible and they can't remember more than 3 steps at a time. Fear is the main emotion with those with Autism. Emotions are replaced by emotions. They often have a fear of something that scared, hurt them happening again. i.e. If a fire alarm went off at school last week, they may worry everyday it will go off again. Long streams of verbal information are hard for them to remember and they often struggle with multi-tasking.

When questioning whether a therapy or program is working for your child, ask yourself one question....Is progress being made? If progress is being made then continue. If after more than a month progress is not being made you may want to reconsider. Progress is the key. Other advice, make the transition from the world of school to the world of work a slow one.

Mentioned books: Perfect Rhythm; Unwritten Social Rules; Thinking in Pictures; How Can I Talk if My Lips Don't Move; The Little Rainman; Developing Talents. She also recommended Carol Gray's video to go along with her books.

I know this is a lot, but I hope you found it helpful.

Dr. Tony Attwood

Tony Attwood

The interview on blog radio has expired, but Tony Attwood is always worth reading.

Girls and Asperger's! Girls can camouflage, mimic and act to fit in to social situations. Girls with Asperger's don't understand why friends bully or are mean. The Asperger's female are very loyal and trustworthy and don't understand how a friend could do this. How Asperger's females can attend social events but unlike their male counterparts who may react angry when overwhelmed, females become physically and emotionally exhausted after the event from trying to cope and fit in. Best to allow the Asperger's person to take breaks every 20 - 30 minutes. Have a code word so the child can tell a parent when they need a break without being embarrassed.



http://www.tonyattwood.com.au/

New Awareness, New Numbers

The number has changed again. What does this mean? Are we diagnosing better? Is awareness finally working? What ever the number is, it's real and our kids need to be identified, and given the tools to help them become the successful, wonderful human beings that we already know exists within each of them!

http://abcnews.go.com/Video/playerIndex?id=8759304

Interesting Comments by John Robison

I watched the video and liked parts of it. I really liked John's comments to it.



http://jerobison.blogspot.com/2009/10/some-thoughts-on-autism-speaks-video.html

Back to Sleep and Autism

We have often wondered if our daughter being on her back so much (Back to Sleep Campaign) had anything to do with her autism diagnosis (PDD-Nos). The back of her head is flat. The Pediatrician felt the only problem would be cosmetically (that was when she was 4 - 6 months old). The skull caps that babies now wear to correct the flat head syndrome were not available then and when they did become available her skull was already formed. Also, when they first went on the market they were not covered by insurance and cost around $4000.00 making it unaffordable for most of us. We have heard occasionally that it is now recommended to have babies sleep on their back but be on their tummy for play. Children tend not to explore their surroundings on their backs. Our daughter crawled on her back like an inch worm and was developmentally delayed. She started to crawl on her knees when she was 1 years old and didn't walk until she turned 2 years old. It seemed that the increase in Autism started around the same years as the "Back to Sleep Campaign" but have not found a lot of research on this as of yet.

I did find this link:

http://answers.google.com/answers/threadview/id/423728.html

I am looking for more research, if you know of any please pass along to me. Thanks!

Blog and Information Share

BLOG RADIO SHOW -- CHECK OUT THIS AUTISM RADIO SHOW (ASPERGER WOMEN ASSOC.)

INTERESTING INTERVIEW WITH JOHN ROBISON AUTHOR OF "LOOK INTO MY EYE".

http://www.blogtalkradio.com/AspergerWomen/2009/08/31/John-Elder-Robison-NYT-Best-Selling-Author

http://johnelderrobison.blogspot.com/

WHAT PARENTS OF KIDS WITH AUTISM KNOW

http://autism.about.com/b/2009/09/05/what-parents-of-kids-with-autism-know.htm

ANOTHER GOOD LINK: http://autism.emedtv.com/autism/types-of-autism.html

http://facesforkids.org/

http://www.examiner.com/x-19067-York-Special-Needs-Kids-Examiner~y2009m9d6-Semantics-Do-they-have-Autism-or-are-they-Autistic

COPING WITH AUTISM AND OCD:
http://ezinearticles.com/?Coping-With-Autism-and-OCD&id=1551415

http://www.brighthub.com/education/special/articles/45617.aspx

CUTTING THROUGH PSYCHOBABBLE:

http://www.bbbautism.com/diagnostics_psychobabble.htm

New Autism Awareness Song -- Give it a Listen - PLEASE!

http://www.theautismnews.com/2009/08/29/through-my-eyes-by-thanh-bui/

Off we go......Another School Year Begins!

Every school year offers new beginnings. For the ASD (Autism Spectrum Disorder) child it also means fear. Fear of new people (teachers, classmates, supervisors etc.). Fear of new rules. Fear of what to do, how to fit in and how not to be discovered. It usually starts right around the time that the "Back to School" commercials begin. Those little subtle comments that let you know we're thinking about the new school year. We are worrying about who our teacher will be. What the other children will think of me. Will I have friends? Who will I eat with and who will play with me at recess? These are actually the same things that most kids worry about. The difference is the child with ASD will perseverate on this, obsess and worry over and over again. You may even see OCD behavior. I know in our house the OCD monster had been fairly quiet all summer long. The minute the school supplies hit the aisles at the local Walmart, the resurgence of the monster appeared. The repeating of certain rituals began. The constant repeating of questions and need for reassurance. My child with ASD worries every year that her classmates will discover she has Autism. She worries that once they find out, they won't like her anymore. I'd tell her not to worry, but it has happened. The kids she trusted her secret with eventually decide they don't want to be her friend anymore. She has been lucky to have one friend who just accepts her and seems to really like her. Others became tired of the OCD and distant themselves from her. Or they just rolled their eyes and let her know she was bothering them. Unfortunately, she doesn't understand some of these social cues and gets caught up in the behavior and makes it worse. Every year we try to meet the teacher and check out the classroom ahead of time. This seems to help with the anxiety. She is at a point where I can try to teach her to back off and try to view it as the other child's loss. "If you act like you don't care they may come around." Those with ASD have trouble seeing things half way. They view the world in black and white and those gray areas are very difficult for them. If we don't keep the OCD under control, that is what becomes the main focus of the child. Any other learning may be sacrificed because the child is caught in a OCD ritual which takes over all of their focus. This year she is starting the school year with the help of an anti-anxiety medication. So far so good. Good luck to all starting the new school year. All children are special gifts from God and need to know their importance in this world.

Man arrested for abusing autistic stepson

First it is the neighbors, now you can't even trust some family members to understand Autism.

Man arrested for abusing autistic stepson

It is important to spread awareness about Autism. In some cases they may not speak or speak too much as in this case. First and foremost they are human beings who deserved to be treated as a human being. Yes, they have feelings and do bleed when you hurt them. After all we are all God's children, no matter what issues we may have.

Q&A with a Occupational Therapist

The video above is with Ms. Sakina Kapadia from Milestones Therapy Center, Crystal Lake, IL.
Ms. Kapadia was nice enough to spend some time with us answering a few questions. Sakina Kapadia was my daughter's first Occupational Therapist and she introduced us to Sensory Intergration Dysfunction. Because of the work Sakina did with my daughter, Breanna's quality of life has improved greatly. We wanted to share this video with those of you who may be just starting your journey and not yet familar with Occupational Therapy. Or, for those who may just want to learn more about Occupational Therapy. We hope you find it informative.

Discrimination

Very sad!

http://www.examiner.com/x-3565-Autism__Parenting-Examiner~y2009m8d2-Neighbors-cruel-discrimination-against-autistic-child

Learning, Learning and More Learning.....

I now have my own Autism library. When you receive the diagnosis the first thing you do is research. You try to learn as much as you can about Autism and what you can do to make it better. Here are a bunch of books which I have found helpful. I hope you find them helpful too.

The Autistic Spectrum - A Parents' Guide to Understanding and Helping Your Child by Lorna Wing, MD........The EVERYTHING Parent's Guide to Children with Autism by Adelle Jameson Tilton......Keys To Parenting The Child With Autism by Marlene Targ Brill, M.ED. ........ Understanding Asperger's Syndrome - Fast Facts by Emily L. Burrows & Sheila J. Wagner........
Asperger's and Girls by Future Horizons, featuring Tony Attwood and Temple Grandin, plus seven more experts.....The Hidden Curriculum by Brenda Smith Myles, Melissa L. Trautman, Ronda L. Schelvan......Ten Things Your Student with Autism Wishes You Knew by Ellen Notbohm.....Unlocking the Mysteries of Sensory Dysfunction by Elizabeth Anderson and Pauline Emmons.....The Out-of-Sync Child by Carol Stock Kranowitz, MA.....The ADHD AUTISM Connection by Diane M. Kennedy.....The Social Stories Book by Carol Gray......

Childrens' Books ------ When My Autism Gets Too Big! by Kari Dunn Duron........I Like Birthdays...It's the parties I'm not sure about! by Laurie Renke......(For children with OCD issues, Up and Down the Worry Hill by Aureen Pinto Wagner, PhD

For Adolescent's with OCD ---- Touch and Go Joe by Joe Wells

And for my other wonderful daughter --- Understanding Girls with AD/HD by Kathleen G. Nadeau, PhD, Ellen B. Littman, PhD and Patricia O. Quinn, MD (ADHD symptoms are much harder to identify in girls than in boys).

If you have books not listed above that you would like to recommend, PLEASE FEEL FREE TO LIST........

Some more links:

http://www.thegraycenter.org/

http://www.asperger.net/

http://www.autismweb.com/books.htm

http://www.autism-pdd.net/autism-books.html

Special Recreation Associations

I do not have experience with all Special Recreation Associations, but we have been involved with NISRA (Northern Illinois Special Recreation Association). They have been a wonderful organization for us. Every staff person I have met could not be nicer to our daughter and to us. They always have enough staff for participants. The ratio is usually no more than 2:1, if not 1:1. The programs have been extremely organized. I have felt very confident leaving my child in their care. I would suggest if you are looking for a recreational program for your child that you either look into NISRA or the association in your area. From attending Special Olympics I have seen other Illinois associations and they also seem well-organized and very kind to their participants. Good luck!

http://www.nisra.org/

Special Olympics Lives Up to its Name

Special Olympics truly lives up to it's name. It is an incredibly special experience. Many children on the Autism Spectrum find it hard to participate in organized sports. I know for our daughter finding anything she could participate in was difficult. I felt so bad for her since her brother and sister were coming home with medals and trophies. She would say she would want to play like the other kids, but then could never do it. She liked basketball, but was so afraid of the buzzer going off that it would paralyze her. Some teams could be very competitive and the parents were often worse then the kids.

I called our local special recreation association group, NISRA (Northern Illinois Special Recreation Association). I spoke with the women in charge of Special Olympics. We discussed different sports and decided on Rhythmic Gymnastics. It was an individual sport. We felt for her first experience an individual sport may be best. She trained for 8 months and competed in the regional competition. The nice thing about Special Olympics is everyone is a winner. The competition is done based on ability and no one ever feels bad about their performance. Upon winning a medal she qualified to go to State in two months for the Summer Games.

Our first experience at the Illinois State Special Olympics Summer Games was the most memorable experience. From the minute we arrived, we were greeted and welcomed as family. It was such a well organized event and the love from volunteers was overwhelming. I always say "You cannot attend a Special Olympics event without being happy". Watching how happy and proud the athletes and their families are was contagious. The Opening Ceremonies was like no other. In Illinois the law enforcement community fund raise for Special Olympics all year long. For the last few years that we have attended they have raised over 2 million dollars each year. They send representatives from the different police departments to take part in the event. Some police officers present medals to the athletes at the medal ceremonies. They turn down the lights and the officers participate in the torch run. That was an amazing sight which just leaves you standing with so much pride. They then pass the torch to different athletes who then light the flame to open the games. My daughter's first year NISRA allowed her to help carry their banner onto the field. We were so proud! Every time she attends the games, she grows more and more. She travels down on the bus with the other athletes and her Rhythmic Gymnastics team. She stays with the team at the dorm and she would have it no other way. SHE LOVES IT!

We stay at a nearby hotel, which gives our family a nice respite. We get to do things we may not be able to do when she is with us (like eat out, or just go bumming around). The really cool thing about staying at the hotel for Special Olympics is that almost if not everyone was there for Special Olympics. It was the one place/time where you can be that no one will judge you. No one cares if your child is standing in the lobby stimming, screaming, or making squawking noises. We were on the elevator with a lady and her son. When the elevator doors closed the boy began to panic. He began fight and flight. He wanted out and to run away. The mother kept apologizing. I told her there was no reason to apologize we have all been there. She looked at me and said "Autism"? I said "Yes", the doors opened and they left. We all know that feeling where you cannot control your child and only want to keep them safe. Most times people don't understand and think you're a bad parent and your child is a brat.

I'd like to share another story. Anyone who knows me personally knows I have lots of stories. They also know they are going to hear it whether or not they want to. When my daughter was about 2 years old, before we had a diagnosis, my friend and I decided to take the train into the city with the kids. Well, here's where that vestibular sense came into play. That vestibular sense I didn't know she had. I came to find out that you don't take a child who hates movement on a speeding train. This was not a good idea. Then I threw in a confined space and a hyperactive sister, well that was really not a good idea. After repeating over and over (ADHD you understand) "Stop bothering your sister". "Back off of your sister". "Your upsetting your sister please stop". My daughter with ADHD was about four at the time and she was undiagnosed also. Not that I didn't inquire, another story. Anyway the little one with ASD had enough and took her cup and hit her sister on top of the head with it. With that a lady across the aisle decided it was okay to start disciplining my 2 year old. Telling her that she shouldn't be hitting her sister in the head. Besides being exhausted and stressed already from trying to keep one child calm and the other happy. I just looked at my friend and said in a loud voice "It is amazing that people think they have a right to comment on something they know nothing about". My blood pressure was through the roof and that was the last train ride we took for about 8 years.

Special Olympics is really worth looking into. I am sure you can find something your child will be able to participate in. About 24 medals later, we couldn't imagine not being involved with Special Olympics.

Autism Awareness Video

Let us share our journey with you.

Links

http://www.milestonestherapycenter.com/


http://www.sensory-processing-disorder.com/

Check out our Face Book Group: Autism - Joining Together for a Better Understanding
http://www.facebook.com/home.php#/group.php?gid=125405846220&ref=mf

Early Intervention Is Key

My daughter was diagnosed with PDD-NOS 7 years ago. At that time the Autism Spectrum was still fairly new. We began asking at about 6 months of age if she was okay and continued for years to try to find out what was going on with her. She didn't meet the criteria for Classic Autism and doctors discounted her and told us to wait. When she was 3 1/2 we had her screened for speech at our local school district. They accepted her into the Early Childhood Program and began giving her Occupational Therapy along with Speech and Language Therapy. I believe the day she entered that program it changed the direction of her life forever. They began to treat her Sensory Integration Dysfunction and Speech issues. Within weeks we saw improvements. Finally at the age of 5, when she starred off into space while twirling her fingers in front of the Pediatrician, did he finally refer us for an Autism evaluation. Then came the diagnosis. As difficult as it was to hear the words, "Your daughter meets the criteria for an Autism Spectrum Disorder". We finally had a clue of what was happening and our journey continued.

My point for doing this blog is to encourage people to share their experiences. To encourage those just beginning this journey to never give up. If you think there is something going on with your child, keep asking those questions and get as much early intervention as you can. It changed my daughter's life for the better.

http://autism.about.com/od/whatisautism/tp/topfacts.htm

http://autism.about.com/od/treatmentoptions/u/treatmentsuserpath.htm#s1

Sensory Integration Dysfunction Means What?

"I can't wait for the baby to sleep through the night!" "Will the baby EVER sleep through the night?" "Oh she/he's just a Mommy's girl/boy." "The sun hurts their eyes." "They are afraid of loud noises." "He/she hates to wear socks/shoes." If you have ever said or thought some of the statements above, you may want to research Sensory Integration Dysfunction.

When my youngest child was born we found that she did not really like to be held by strangers. As long as my husband or I were holding her, she was happy. She woke up a lot during the night. At first we thought it would pass. Then it continued for months and became more frequent. "This too shall pass" became my favorite phrase. When she was about 6 months old she would rock from side to side if she would become upset. "Oh she is just comforting herself" we said. She did other non-typical things like hold her bottle with her feet or crawl like an inch worm on her back. She was/is quite remarkable you know. We would ask the pediatrician questions and were always relieved when he said she was fine.

By the time she was celebrating her first birthday she became so afraid of flash cameras. When we took her picture she would cry in pain. Then the sight of a camera or video camera made her cry and close her eyes. She hated riding in the car and she was still waking up 5 times a night. This went on for her first 3 years of life. The doctor asked all the right questions, unfortunately we didn't give him the right answers. "How many words does she have?" She had words, what she didn't have was language. We found out later that her speech was repetitive speech, she had no expressive language. She also spoke what they called jargon.

I am lucky enough to have a sister who is a nurse and she wouldn't let me accept the wait and see approach which the doctor recommended. At age 3 1/2 I took her to my school district for a speech evaluation. Within 5 minutes the Occupational Therapist who also evaluated her told me she had sensory issues. "What does that mean?" was my question. She did a good job of trying to explain it to me. She suggested a book called "The Out-of-Sync Child" by Carol Stock Kranowitz, MA. I sat down and read the book in one day and highlighted basically the whole book. She was talking about my daughter. I did the checklists: yes, this was my daughter!

Going through a school or medical evaluation for your child can sure be an experience. Here I was a person who never wanted to speak in public, sitting at a table with 10 different people. Convincing ourselves they were wrong, when they said all the things wrong with our child. Crying hysterically when they said she needed to attend their early childhood program. How could this child who has not left my side for 3 1/2 years go to school? Well, that was the best thing that ever happened to her and us. Within weeks of swinging, brushing and other occupational therapy, along with speech therapy we were actually seeing improvements. Brushing now that was interesting, along with joint compressions. Then came trying to explain it to my husband again and again and again. I have to admit, it really did work for our daughter. Oh yeah and she has problems with her vestibular sense. I didn't even know she had a vestibular sense, but boy did she have problems with it.

Two years later, my daughter was also diagnosed with PDD-NOS. Sensory issues are very common in children on the Autism Spectrum. My reason for writing this is because I had never heard of Sensory Integration Dysfunction before my daughter was diagnosed with it. I don't want it to take so long for a child to get help. The sooner therapy is started the better the outcome can be. The thought of a child suffering because the lights are too bright, their clothes itch them, they hate being touched or need to bump into everything is difficult to imagine for those of us who do not suffer from this disorder. Certain smells can make the children sick to their stomach and a fireworks display can scare them horribly. But education and intervention is available. We had no clue, now nine years later we want to share our story. If by doing so we help one child, it will all be worth it.

If you recognize any of these same behaviors with your child, you may want to consider asking your doctor for an Occupational Therapist referral. Please add your stories, your successes and your questions.

Awareness, Understanding and Compassion

Don't you just wish people would take the time to learn about Autism? Aren't you tired of the dirty looks received when our children do something others view as odd? Just once I wish people would think before they talk. Like you, we have had heartbreaking occurrences. Those times when you want to sweep your child into your arms, run away and hide them from this cruel world we live in. Or, those times where you bite your tongue so hard you taste blood because you know that if you actually say the things your thinking you are going to be labeled crazy or worse someone may call the cops. I will never forget the day we were at my other daughter's basketball game and my daughter with Autism asked for a basketball. I told my daughter if she wanted to bounce the ball she needed to walk over and get one. Already many neurotypical children had been doing this for some time. At half time she finally got up enough courage to go and get her ball. She stood at the back of the gym and did what other children were doing. She bounced the ball, of course she did it repeatedly. Well, it happened that a man whose child wasn't even playing in the game, who had arrived early for the next game and took a seat next to where my daughter was bouncing her ball said to her "CAN'T YOU STOP DOING THAT???" in a not so nice tone. Okay, I may have responded differently had other kids not been doing the same thing. Or, if he had been sitting there first because his daughter was playing, but he really didn't need to be there at this time. In saying those 5 words, he destroyed months if not years we spent encouraging her to take chances, to put herself out there, to allow her to participate with her peers. She came to me destroyed and confused. What was she doing that was so wrong? The rocking began, the tears and the moaning. I looked him in the eye and told him "She has Autism, she doesn't understand". The day was ruined, not to mention her confidence. All I could hope for was that he could have seen what his ignorance caused, but I doubt it.

Just last night one of my daughter’s best friends played a phone prank on her. She couldn't believe it was her friend (A friend wouldn't do that). Not knowing who it was made things scary for my daughter. When the truth came out and it was the friend, my daughter was sobbing to the point of becoming ill. Again, I reminded the friend of her Autism, that she doesn't understand pranks and that she is hurt because her friend is the one doing this. The heartbreaks are horrendous. (Update: The good news here is that the friend has become aware, and they have worked it out. My daughter is learning about different situations and is lucky to have a friend in her life who is really trying. It is hard enough for adults to understand, let alone another child.)

Please share any stories you feel comfortable sharing. Any advice or suggestions that may have worked for you would be appreciated.