Our diagnosis story is similar to most of the ones I've read here... I'm the mother of Ryan, almost 6 and autistic, Richie, almost 3 and Maelynn, 15 months. Ryan does not communicate well, does not express needs or illness unless it's very general, and then we're not sure if it's echolaia from a speech program (at times he'll repeat "I feel sick" robotically). He is at a social/emotional 2 1/2 year old level. He is amazing... very smart, musically inclined, and is the sweetest little guy you could ask for.

My other two children are developmentally typical, and they adore their brother! I've even seen my Richie, on several occasions, try hard to stim just like Ryan, watching him from the corner of his eye. Richie does not care that Ryan is different. He loves his brother with sheer, unadultered, unbridled adoration that only a child can express. Our life is tiring and often difficult, and even going to church is a challenge. We feel isolated in a lot of ways, just by the nature of what we deal with. We live in a small town in central Texas and it's a sweet little place to be! It really is! But the resources for Autism and any other special need are few and far between.

I know what it's like to desperately want to know your child... to want to do the best you can for him, but be in between a rock and a hard place. We love on a teacher's salary, and God always provides what we need... but so often when I do get the rare opportunity to speak to someone who also has a child on the spectrum, they spout off resources and things we "simply must" do for our child... things we haven't been afforded. The best thing we hear? Seriously? "I have no idea what you're going through, but I'll listen and I'll pray." The "I know a child who does so and so" and "why don't you just do so and so" and other well-meant comments, in addition to being so tired of being told "oh, Ryan can't do..." or "Ryan can't come in..." well, you see. They have worn on my already weary heart to the point where I just want to be home, where we all belong and we're all safe and accepted. Where we all know we're doing the best we can to provide what all of us need. I love church... I love Jesus more, though.

I will carry my children, all of them, regardless of ability level, regardless of how they fit into culture or how well they sit still and listen to instructions... I will continue to carry them to Jesus, because He knows and loves all of us! God made our children, He knows them better than we do. I don't know where Ryan hurts, but He does. Ryan can't tell me or anyone else his name, but whether or not I understand how he does it, I believe that the Holy spirit speaks for him, just as He does for me when I'm at the end of my rope. When I'm hurt, sad, and scared... when I've overheard one more person make a comment... when we're left out of yet another something... He feels my pain, and He helps me recover and start over again. His Word soothes the stings of insensitivity and ignorance of others, and He gives me patience to explain, yet again... or keeps my mouth shut so that I don't make things worse. He gives me the smile on my face and the song in my heart. He restores my soul! He gives me the peace of mind and the joy I need to make it not only through another day, but the next hour, or minute at a time on the hard days. He gives me the wisdom through His word to make some sense and to remember that He is in control of it all, even the things that don't make sense. Thank you for this site, thank you to everyone who shares. This is one of the very few times I've felt understood, and that is precious.

More of our story is at thischristianmomsjourney.blogspot.com, simply because God gives my every experience that it might comfort someone else!

It's going to be alright, everyone! Cling to Him!

Hi im a Los Gatos high school student and im doing a research paper on the oppression of Autistic people. Part of my research paper includes an interview with an organization that is helping Autistic people. I was wondering if you would take the time to answer the following questions for me,

1. Do you have any statistics of how many children are affected by this disablitly?
2. Do you find that the disbility is getting better/made progress with special schooling and therapy?
3. Do you feel that the Autistic people are oppressed becasue they are misunderstood or feared?
4. Do you have any uplifting stories that i could share with my class?
5. Do you have any information that i could share with my school on how to help autistic people live a more productive and engaging life?

I really appreciate your time and input and look foward to your reply.

My nephew is autistic but able to express himself very well verbally.

He is only 7 years old and had the insight to ask his mother this question: "is it worse never to be loved or to not be able to love?"

(He has asked numerous questions of a similar kin, which seem beyond the understanding of a 7 year old child of normal intelligence. I am a teacher and have taught children from 5 to 8 years old for many years.)

He is loved by many people but I'd like help with the second part of his question. Can a person with Autism LEARN to love others if they don't have the ability presently?

How will I be contacted if there is a response to my question?

Thank you for your help!

My name is Jerrod and I'm a senior at Pulaski High School in Wisconsin. I recently wrote a newspaper article for the Pulaski Newspaper, and it talks about me about what I have to go through everyday at school.

Here is my article it took me 3-4 weeks of writing and editing and aking it good, hope you like it as much as i do.

My name is Jerrod and I have a type of autism called Pervasive Development Disorder (PDD). No, you didn’t happen to just accidently wander into an autism anonymous meeting; this is my attempt to give you a glimpse into my world and the world of other students with autism. Evryday, my alarm goes off and around 6:15. I roll out of bed and begin preparing for school. I have to get dressed eat breakfast, take my medication, brush my teeth and put on my shoes.
While I’m on the bus, some of the kids try to bully me, but I refuse to fight them (I’m not that kind of person) so I just ignore them, the best I can, and wait until we get to school.
During first hour, I attend gym class. The biggest problem I have in gym is that I have trouble keeping up with my classmates. After recent foot surgeries, I am still limited by the pain and had to take a week off of gym. Even though I was able to rejoin my classmates a week later, I’ll still likely have to have more foot surgeries in the future.
Besides struggling because my surgeries, gym class is also hard because I don’t have any friends in this class and often I end up being paired with someone I don’t know to do activities like weight-lifting.For now, I just look at it as another obstacle I have to overcome. (Sometimes I feel that there’s an obstacle around every corner while I’m at school, but I just deal with it and keep going.)
After gym, I have business class. I like it, but it’s a bit fast-paced for me. I find the material interesting and enjoy the projects (one of our projects is to make our own business and I really like that) but sometimes I wish it was slower paced.
My next class is Pulaski News, and it’s my favorite class (and, no, I’m not just saying that because my article is in the paper) but I enjoy writing for a newspaper that is distributed throughout the public and enjoy the hands-on aspect of the class.
Passing time in-between classes is tough because there is a lot of noise and people hanging out and I wish I could join in their fun.
Fourth hour I have math class, however, I take math through an online program called Odyssey, which is nice because it reads the problems out loud. This is a big plus since sometimes reading more complicated material can be difficult for me.
I’m supposed to do my math work during fourth hour, but lately I’ve had to use that time to make up missed gym classes. I will have to be sure to catch up my math when my gym class is caught up. I worry about this a lot even though my teachers reassure me it will be okay.
During fifth hour, I have study hall, which is a nice chance to slow down and make sure I’m caught up on all of my work. At least that is how it is supposed to go. Sometimes it takes me a long time to catch up on my work so I don’t always finish my current work, so I often worry about completing everything on time.
Sixth hour I work in the school guidance office as part of my school’s work experience program. The program is designed to help students to prepare and develop skills that will help them once they’ve graduated from Pulaski High School. As part of my job description, I run passes to students and teachers, make copies and just generally help out in anyway I can.
The last hour of the day I have art class. I like the class and making the projects, but sometimes it’s a little difficult to keep up with my classmates who always seem to be a few steps ahead of me. I am trying to work through it the best I can. I know trying my best is all I can do, but it is hard to be okay with that.
Finally, at 2:48, the bell rings and I make my way to the buses to head home. I like to get on the bus first and get one of the back seats. I think I should get a back seat since I’m a senior. Sometimes the other students pick on me on the ride from school, but I just tough it out until I get home. A lot of time when I get home I need to rest and shoot hoops to help reduce stress from the school day.
While I know the education I am receiving as a student at PHS is important and necessary, I wish I had more of an opportunity to make more friends among my classmates. Often, other students are confused by my condition and do not know how to react to me.
This is especially difficult since PDD already makes it hard to meet new people and understand other people’s intentions. I think I have gotten better about it as I have gotten older, but it sometimes still bothers me.
While students with an ASD may require extra time and assistance in the classroom and a few other everyday situations, it’s important to remember that we still want to be treated normally, like everyone else; ask me about autism, I’m happy to talk about it. I want to help others understand ASD disorders.
My story is just one of the 730,000 individuals in America living with an Autism Spectrum Disorder (ASD). With no known cause, and so many variants of the disorder, it’s important to remember to treat those with ASD like “normal” people. As one of my favorite, famous individuals living with an ASD Temple Grandin says, “I am different, not less.”

One Saturday evening 5 years ago, we were sitting in the pew with our four children at Mass. During the consecration, the priest held up the host and repeated the words of Jesus: “Take this all of you and eat.” The word “all” resonated in the spacious church and we realized that our 7-year-old daughter Danielle, who has autism, was certainly part of that “all.” But as we fixed our eyes on the consecrated bread and wine, we were both praying God in heaven; don’t let her spit it out.

 

Fortunately, when the time came a few minutes later for Danielle to receive her First Holy Communion, our prayers were answered. Danielle received the precious Body of Christ reverently. Kneeling together in silence, our family shared this very special moment in our daughter’s life, a moment we thought might never happen.

 

But our story didn’t begin that August evening. When Danielle was 4, she was diagnosed with autism, a neurological condition that affects language, social interaction, and behavior. Danielle is non-verbal and we realized early on that for her to receive the gifts of the sacraments she would require a different approach than what’s used for most children, including her two older brothers.

 

Like many children with autism, Danielle is a visual learner and uses a picture-based language to communicate. Therefore, she needed a visual, picture-based approach to learn what was needed in order to be ready to receive her sacraments. She prepared for her First Holy Communion using a variety of homemade teaching tools. With this approach, she was able to satisfy the bishops’ requirements of distinguishing the consecrated host from ordinary food and receiving communion reverently. We were so proud of her!

 

Some time after this, our son Brendan, a Boy Scout, was nearing the rank of Eagle. As part of this process, he had to organize and implement a special project. He remembered how we had prepared Danielle for her First Communion and told us that other parents “should not have to reinvent the wheel.”

 

Therefore, for his Eagle Scout Project, he developed a special needs resource library in our parish to be used by children who might require special approaches to prepare for their sacraments. Out of this we put together additional materials that ultimately became The Adaptive First Eucharist Preparation Kit, now available through Loyola Press.

 

This brings us back to the words of Jesus quoted at the beginning of our story: “Take this all of you and eat.” We believe that Jesus was reaching out to all people everywhere, including people with cognitive and developmental disabilities. We believe strongly that Jesus meant to include all God’s children and that is why we are so excited to see the Adaptive First Eucharist Kit available as a resource to help this all become a reality.

 

The Adaptive First Eucharist Preparation Kit contains eight pieces to enable children with autism and other special needs to participate fully in their faith, including picture cards to use during Mass that remind children of participatory behavior and a matching puzzle that helps the child distinguish between the Eucharist and ordinary food. This kit includes social stories and picture exchange communication system (PECS) strategies. The learning tools in this kit have been successfully used by Danielle and many children like her to fully experience their faith and become prepared to receive the Eucharist.

 

You can order the Adaptive First Eucharist Preparation Kit (ISBN: 978-0-8294-3580-1) by calling 800-621-1008 or visit LoyolaPress.com/special-needs.   

Mercedes and David Rizzo

  

If parents have a child with some form of autism, there is a 19% chance that their next child will have autism also, according to a study that was published in the journal Pediatrics. Researchers have long known that autism runs in families.  Previous estimates of the risk of recurrence ranged from 3 to 10 percent. These estimates were based on small numbers of families and with a more narrow definition of autism than the way that autism is defined today.

In the new study, researchers in 12 locations across the U.S. and Canada followed 664 infants who had at least one older sibling with autism.  The infants were an average of 8 months old when enrolled in the study which is before the signs of autism are usually apparent. At age 3, each child was evaluated. Among the boys, 26% were found to have some form of autism. The rate for girls was 9%. The rates were the same regardless of the sex of the older sibling and the severity of the older sibling's autism. Having more than one older sibling with autism further increased the chance of diagnosis to 32%.

Scientists have collected DNA samples from many of the children in the study to look for genetic differences between the sibling pairs who have autism and those who did not. The aim is to develop a clearer understanding of the genes involved in autism and potentially develop tests that would measure risks in individual families.  The study provided further evidence for the strong role of genetics in autism.

 

First, I have to say that reading your "Welcome to My World" brought tears to my eyes. It could be our story. My son, Sean, just recently turned 5, but we've known for 4 years that he was at least 'different'. By 15 months, he still wasn't saying ANY words, and didn't seem to have an interest in the world around him like his brother did. At that time, he was diagnosed developmentally delayed. By 20 months we had him in speech, and at his 2nd birthday it seemed that a light switch came on and the child was speaking in intricate sentences. Still, while the most affectionate, cuddly child i'd ever known, he also had the most severe behavior issues I'd ever witnessed. It took another year, and a dramatic turn for the worse for me to have someone agree it was more than just toddler behavior. At 3 yrs 6 months my son was diagnosed PDD-NOS and ADHD. We had him assessed for OT and it made a HUGE difference in him. We also discovered a milk allergy, and quickly made changes to his diet which seemed to alter his behavior over night. We also learned that he processes things differently. I can't say "get dressed." It has to be a 'when, then" statement. When you get dressed, you can go play.

We start kindergarten next week, and we are both a little apprehensive. I created him a new school book complete with pictures of all the rooms, and staff to prepare him. His brother will also be in the same building, but he's nervous. They had a pre-k camp for a week in June and he only lasted 2.5 days. He had horrible behaviors, attacked the teachers, and the last day had a complete meltdown. They had read a story and completed an activity on turtles (which he loved.) On the playground, he found one. He wanted to put it in a box to show mommy and they wouldn't allow him to, and he didn't understand. When i came to pick him up, he had no idea he was in trouble, only excited that he'd found a turtle. When i explained why i was there, he was so upset "saying I'm a stupid head." Broke my heart. Later when i could discuss his behavior he said the school was 'scary' and that he had no friends and no one would like him. He has so many fears and desperately wants to be liked and involved. His social skills are not usually accepted though.

Sean has always been on the go....he was 4 before he ever slept through the night because he couldn't settle down long enough to really sleep. He has a real need to be jumping, running, crashing, etc. Often people just don't understand it because he seems so 'normal' and he gets treated poorly for being a 'brat.' Since he was a year old, his one true fascination in life is bugs. He is constantly collecting them and 'amylizing' them as he says LOL. He can get a book now and identify his finds and tell you a great many details about them. His life in general is very scientific in nature--he is naturally inclined to think that way. Perhaps its because science tends to be fairly black/white, and he, as many spectrum kids, lives in a literal world. We went to the mountains and my car was slowly climbing a steep one. I said, "come on car, quit crawling up the mountain." He responds, "cars don't crawl mom....they have wheels and roll." LOL He is the light of my life and tells me daily that i am his best friend and he will love me forever. He gives great hugs and tells great stories, but it's his insight that astounds me. One week when he was about 4, I had been secretly having a 'why me' week. We were in the car (where the best conversations always happen) and he says "Mom, God uses me." "What, how's that?" I replied. "He uses me to give you eyes so that you can see." WOW!!! He does indeed. I am blessed to be his mother, and am not sure I deserve the honor, but I am truly seeing life in a different way.

At the Autism Society of America Annual Conference, the International Society for Autism Research showcased its MeMoves video. MeMoves video can facilitate neural functioning and increase social communicative functioning. It was designed to increase focus and attention.

The video is simple. It shows people of all ages and ethnicities from young child to grandparents slowing moving their arms in different patterns and keeping rhythm with a beat similar to a metronome. There are three different sequences. They are joy, calm, and focus. The soothing music and fluid movement can help to unlock the mind of the autistic child. The video has no narration, nor are there loud noises or instructions to click to another screen. The simplicity of the video captivates children and gives them an opportunity to become calm and to focus. The video has also been used in nursing homes for patients with dementia. One mom reported that her daughter went from being able to read single letters to reading words and then chapter books. She began to make eye contact and spoke more fluently and easily. Twelve week studies have also been conducted and have shown good results. In the future, a study with a large number of children with autism will be conducted.

At the conference, attendees could watch the video and imitate the moves. Many of the adults (myself included) felt relaxed and calm while watching the video and doing the simple movements. I purchased the video myself to use with my children. I have to admit that I find it calming also. You can view video clips and get more information and details about MeMoves at www.thinkingmoves.com  There is also an available iPhone application. I highly recommend this product.