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.