Autism Training Conference Gives Autism Education an Extreme Makeover

Autism Training Conference Gives Autism Education an Extreme Makeover

Autism Conference for teachers and parents gives traditional philosophy of handling children with Autism and Autism Spectrum Disorders in the education setting an Extreme Makeover.

Grand Rapids, MI (PRWEB) June 23, 2010 -- Autism was added as a special education exceptionality in 1991 and is now the sixth most commonly classified disability in the United States. While it is evident that more children are getting special education services for autism than ever before, traditional treatment for autism has not changed in the past 30 years.


Teachers and other educators in the school system often seek solutions to the challenges they face daily with children in the Autism Spectrum. The team of clinicians and educators at Horizons Developmental Remediation Center created the Extreme Makeover Autism Education Conference in response to this need for answers. The autism training conference outlines that what needs to change for improved communication is not just the child, but how teachers and parents respond to and guide him or her through experiences.

Nicole Beurkens, founder and director of the Horizons Developmental Remediation Center, developed the conference to share the research-based discoveries she has made since experiencing frustration as a classroom teacher. "I was tired of other people telling me how wonderful it was that my students were talking, behaving in the cafeteria, and getting A's on their spelling tests. What I longed for were students who could think, communicate, flexibly adapt, and have true friendships."

The 2010 Extreme Makeover Autism Conference will be held in Grand Rapids, Michigan on August 4-6, 2010 at the Hilton Grand Rapids Airport Hotel. This is a hands-on CEU applicable training that offers to save education professionals time, energy and money by addressing how to approach each day with their students, simplifying the writing of IEPs, involving parents in the course of action, reducing ineffective use of resources, and most importantly, minimizing frustrations and feelings of incompetence when it comes to working with these students.

While the workshop is geared toward serving students in educational settings, parents of children with autism are also welcome to attend. Professionals who have attended this workshop previously indicated that they benefited greatly from the perspective of the parents in attendance, and parents commented about the benefits of insights of the professionals.

Parent and teacher Donna Goyette said this about the Extreme Makeover Autism Conference, "I've been living with autism for 15 years and thought I was doing everything I could possibly be doing right - until I attended your seminar. The concrete examples you gave for every message you were trying to convey to us were awesome, including the videos so we could see it working in action. This information needs to be shouted from the mountaintops, and I would recommend this seminar to parents and educators."

To register for the Autism Conference, visit www.horizonsdrc.com or call (616) 698-0306. Group and early-bird discounts available.

About Horizons
The Horizons Developmental Remediation Center in greater Grand Rapids, Michigan provides family-focused treatment for developmental disabilities, including autism, Asperger's, communication issues, speech and language problems, feeding concerns, sensory-motor struggles, behavior problems, and learning difficulties. Using the RDI® Program, Horizons treats the core problems that impact functioning and involves parents in the treatment process. Through the use of web-based programs, Internet and phone conferencing, video reviews, and other communication formats, the treatment program is available to families wherever they are located in the world. For more information, visit www.horizonsdrc.com or call (616) 698-0306.

Great Giveaways Posted On Our Forum

Have you visited the AutismLearningFelt Forum lately? If not, you are missing out on some great giveaways that have been posted in there.

Some of the giveaways that are currently listed include a Warm Buddy Warming Pillow, a Keurig B60 Special Edition System, and Sid the Science Kid Gotta Know Microphone. Visit the forums to find the links to these great giveaways.

The AutismLearningFelt forum is a great place to meet up with other parents of autistic children. Feel free to join in on current discussions or start a new one. Do you need advice or just want to connect with another adult that understands what you are going through? I'd love to have you join us.

Celebrities and Special Needs Children: Raising Awareness or Child Exploitation?

Having a special needs child is something that no one is immune to. It happens every day, all around the globe. Rich people, poor people and everyone in between. Even celebrities.

Some would call it a Hollywood “trend.” Celebrities shouting from the rooftops about how they are raising a special needs child. Yet, can this really be viewed as a trend? Or is it simply a matter of raising awareness?

Celebrities like Jenny McCarthy have gotten plenty of guff for what some people claim is nothing short of exploitation when it comes to sounding off about her autistic son. Some wonder if she used to him resurrect her stalling career or that her former beau, Jim Carrey.

Though it may be tempting to point fingers and accuse a celebrity of the “any press is good press” mantra, nobody can deny the fact that McCarthy has tirelessly donated her time and resources to raise autism awareness via several charities and events, including the Jenny McCarthy and Jim Carrey Autism Organization – Generation Rescue.

In another example, celebrity/politician/author, ex-Alaskan Governor Sarah Palin, was accused of using her son Trig, who suffers from Down syndrome, as a campaign ploy and a push for her stance on Right to Life issues. While Ms. Palin vehemently denies doing anything other than sharing her “colorful” family with the nation, the rest of the country couldn’t help but take notice of Down syndrome issues, which spawned a resurgence in educating later-in-life mothers about the risks involved in having babies after age 35.

While having a special needs child is no easy road to travel and there is no safe online pharmacy to go to and make it all “go away” there is much to be said for those who are brave enough to share their “normal-to-them” children with the rest of society. Celebrities or otherwise. Because sharing these special, wonderful gifts of God raises awareness on several levels, which often translates into raising money and resources for the cause. And that, any way you slice it, can only be a good thing!

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Liberty Kontranowski is a freelance writer with hundreds of articles published online and in print covering topics like health, sex, celebrities, beauty and more. She is part of the Viamedic writing team, providing top-quality articles to safe and secure online pharmacies like Viamedic.com.

Divorce Rates of Parents of Autistic Children

80 Percent Autism Divorce Rate Debunked in First-Of-Its Kind Scientific Study
Kennedy Krieger researchers find autism does not affect family structure
Press Release
For Immediate Release: May 19, 2010

PHILADELPHIA, PA — Having a child with autism can put stress on the parents’ marriage, and a frequently cited statistic leads to a common perception that the divorce rate among these families is as high as 80 percent. But a study to be released at a news conference today by researchers from Kennedy Krieger Institute in Baltimore found that a child’s autism has no effect on the family structure.

Brian Freedman, PhD, lead author of the study and clinical director of the Center for Autism and Related Disorders at Kennedy Krieger Institute, said the findings seem to debunk a lot of the general understanding about high divorce rates among parents of children with autism. Dr. Freedman and his research team found that 64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.

Dr. Freedman will present results of the study in Philadelphia at the International Meeting for Autism Research, an annual scientific meeting convened to exchange new scientific progress among autism researchers from around the world.

Receiving the news of a child’s autism diagnosis can be devastating, and Dr. Freedman said the pain is compounded as parents ponder what will happen to them as a couple. “In the work I’ve done with children with autism, I’ve come across many couples who quote this 80 percent divorce rate to me. They don’t know what the future holds for their child, and feel a sense of hopelessness about the future of their marriage as well — almost like getting a diagnosis of autism and a diagnosis of divorce at the same time,” he said.

With very little empirical and no epidemiological research addressing the issue of separation and divorce among parents of children with autism, researchers sought to more scientifically examine the incidence. Using data from the 2007 National Survey of Children’s Health[1] , they examined a nationally representative sample of 77,911 children, ages 3 to 17.

Previous research speaks to the fact that parenting a child with autism is stressful, and it puts pressure on the marriage. Dr. Freedman noted that past studies have found couples with a child with autism experience more stress in their marriage than couples with typically developing children or couples with children with other types of developmental disabilities, such as Down syndrome. Mothers of children with autism report more depression than those with typically developing children, while fathers report they deal with the stress by distancing themselves and becoming less involved with the family.

“While there are indeed stressors in parenting a child with autism, it doesn’t necessarily result in the family breaking up more often than would occur in another family,” said Dr. Freedman. “And as someone who works with a team of health care professionals to treat and provide support for families of children with autism, it’s important for us to make sure our patients’ parents know that, and for our fellow clinicians to provide reliable, evidence-based information about the divorce rate among this population as well.”

This analysis of the National Survey of Children’s Health data showed there are certain factors in a family that can contribute to divorce, such as having a child with particularly challenging behaviors, with or without autism. For some families, the challenges of parenting a child with special needs may indeed result in straining the marriage to the breaking point. Further research is needed to understand the relationships among in-tact families with children with autism to identify how they work through the challenges.

“I would hope this research drives home the importance of providing support to these families, and letting them know that their relationships can survive these stressors,” he said. “We should continue to provide training for parents so that they can work through the stressors in their relationship to keep their family together and have a successful marriage.”

Dr. Freedman’s presentation will be held on Friday, May 21, 2010 at 1:30 p.m. ET during the Epidemiology 2 Session in the Philadelphia Marriott Downtown, Grand Ballroom CD Level 5 room.

In addition to Freedman, the research team includes Luther Kalb, of Kennedy Krieger Institute; and Ben Zablotsky and Dr. Elizabeth Stuart, of Johns Hopkins Bloomberg School of Public Health.

About Autism
Autism spectrum disorders (ASD) is the nation’s fastest growing developmental disorder, with current incidence rates estimated at 1 in 100 children. This year more children will be diagnosed with autism than AIDS, diabetes and cancer combined, yet profound gaps remain in our understanding of both the causes and cures of the disorder. Continued research and education about developmental disruptions in individuals with ASD is crucial, as early detection and intervention can lead to improved outcomes in individuals with ASD.

About Kennedy Krieger Institute
Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore, MD serves more than 13,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit www.kennedykrieger.org.

Letters To My Child

I would like to start something new on my blog, but I will need your help. The idea for this came from Eve, Letters To Breathe. If you are not familiar with her site, go on over and visit. I want to start featuring letters to our child(ren) on the weekend. Anyone can participate in this. I would like the weekends to be more about family, than it has been, on my blog.

So, if you would like to write a letter to your child or letters to multiple children in your life, I will post them here. They can be anonymous or include your name. It's up to you. You can include pictures, or not. That is your choice.

All letters and/or pictures can be emailed directly to me at tammy@learningfelt.com. Type "Letter To My Child" in the subject, so I know what it is about, and don't accidently delete it if it ends up in my junk mail.

Connect With Other Autism Parents

Have you been over to the AutismLearningFelt Forum? I've made a couple of changes. I moved the Giveaways Around The Blogosphere into the forum. This is so that I don't have to keep up with the ones that have expired and delete them.

I am trying to pull in new members, and to get the current ones more active. Getting a new forum off the ground takes time, I know. I really want it to be a place where we can discuss anything and everything. Connecting with other parents of autistic children can be a big help. You can discuss things that they understand, because they have been there or are still going through that.

Any autism parent will tell you that, unless the other person is raising an autistic child, they can not truly understand what you are going through. Because of that, advice and support is best when they come from someone in a similar position as you.

If you are in need of support or just feel like chatting, come on over to the forum. I'd love to get to know all of my readers better. Feel free to ask me any questions, too.

TV Series Parenthood Raises Autism Awareness

I wrote about the show Parenthood, when it first came on. Now, several shows into this new series, and I am still watching it. Adam (Peter Krause, "Six Feet Under"), the oldest Braverman sibling, and his wife Kristina (Monica Potter, "Trust Me") are adjusting well with their son Max (Max Burkholder, "Brother and Sisters"), who was recently diagnosed with Asperger’s Syndrome.

In last night’s episode, Adam’s father, Zeek (Craig T. Nelson, "Family Stone," "Coach"), moves in with the family. It was interesting to watch the dynamics between father/son, and grandfather/grandson. One very poignant scene was when Craig T. Nelson’s character describes what it s like living with his son’s family. He said that Max ruled the house.

It was obvious that he didn’t approve. Here is a man that was used to having everything revolve around him. He was in charge of the household when his kids were growing up. Now, he is in his son’s house, and their schedule and lives revolve around Max. Then he saw what happens when the schedule is disrupted. He realized how important predictability can be for a child on the spectrum.

For an outsider to come into a home with an autistic child, it could be like walking into another world. Face it, we do a lot of adjusting for our child. It gets to the point that it is easier for the family to do that. Then, over time, it becomes natural. Seeing things from the grandfather’s point of view, reminded me why my parents sometimes have a difficult time watching my son. Especially, since my son is nonverbal. When he is upset, he has an extremely difficult time communicating with his communication device. I try to make sure my parents know all of his triggers, but I always miss a few or they forget.

I think the writers are doing a great job with this show. I believe that the more people that watch it, the more they will understand what our lives are like. So, if you are not watching this show, DO SO.

Inspiring Story Of A Single Mom Raising An Autistic Son

I would like to introduce you to Karen, a single mom, raising an autistic son. Here is my interview with her.

1. What were your concerns about your son that led you to get him evaluated for autism?
Autism wasn’t on my mind. I was concerned with his lack of communicating verbally.

2. How did the diagnosis affect you and your family?
I am a single mom. I was divorced before I found out. First, I was devastated, then angry. After that, I was ready to fight to help him overcome his obstacles.

3. Did you receive Early Intervention Services? If so, how did they help or not help your son?
Basically, no. He just got speech therapy, and I had to fight like you wouldn’t believe to receive it.

4. Now that your son is 14, how has he progressed?
He is very independent, outgoing and willing to try new things. I had to develop my own therapy and intervention for him to get this far. It seems like I did everything for him by myself. I have never felt so alone.

5. What concerns do you have now that he is closer to being an adult?
Will he be able to take care of himself if something happens to me? Will he find the right job, will he be accepted?

6. What are a couple of the hardest things you have had to deal with?
Finding the right education for him (not totally successful) and intervention services.

7. What are a couple of great moments with your child?
Seeing him smile and the confidence he has. Learning the electric guitar, karate, soccer, baseball and the confidence to achieve.

8. How do you handle the financial difficulties associated with raising an autistic child? It’s very hard. I do the best I can.

9. He was diagnosed at age two and didn't receive early intervention(except sp). Is this because of the long waiting lists to receive services? Did he age out of early intervention services before being able to receive them?
I was not told about any programs except the pre k with the school system. I pulled him out of it was useless..

10. What kind of obstacles have you had to face with the public school system?
Getting him in the right programs and getting the services he needed. He is in private school now and getting services he was denied in the public school system.

11. Do you have or have you tried, any special diets or supplements with your son?
Yes, supplements.

12. Do you have a support group or any type of support system to help you?
No I do not. It’s just Jesus and me.

Autism Mom Says Anything Is Possible

This is Lisa Weafer's story, in her words. It really touched me, and I am honored to share it with my readers.

My son was diagnosed with Autism at about 2 ¾ years of age. I remember the day well. The Behavioral Psychiatrist told me that Kyle would definitely plateau in his development, probably would never say more than 2 or 3 words and that we should be prepared for that. I took a slow, deep breath, and said, “Thank you very much, but as Kyle’s mom, I have to prove you wrong”. That was 16 years ago, and Kyle is almost 19, a senior in high school and having an incredible year. This was the year he decided to play football and turn out for the wrestling team, activities that my husband and I thought we would never see.

Life with Kyle has certainly had its share of challenges. He has days where his OCD is in overdrive, rituals and obsessions are being played out to the max, and to add to that he has always been a “tactically defensive” child. He never liked being touched, loud noises were painful, wearing clothing with sleeves, long pants, denim were definitely out, and one of the biggest challenges of all: getting Kyle to wear shoes and socks. To this day, clothing is still an issue. It has always been difficult for Kyle to transition to appropriate seasonal clothing for the fall and winter months. He has what we refer to as a “uniform” that includes Kansas State football jerseys or t-shirts, gray jersey shorts and Adidas flip flops. Never mind that it is 20 degrees outside with snow flurries. By now, people are used to seeing him dressed in his “uniform” but early on, we got a lot of strange looks, and comments and criticisms were a plenty as you can imagine. We always joke and tell him that he is going to have to retire in Key West, where he can walk on the beach in his bare feet and swimsuit and not have to worry about wearing shoes or cold weather clothing!

It is amazing, with all of the challenges that Kyle has faced, that he would approach his dad before his senior year of high school and say “I play football.” My husband and I were thrilled, but we knew that we were about to face an enormous hurdle: what to do about the fact that football is a contact sport, the crowd noise level might be enough to send him into orbit, and most of all the clothing and shoe issue. To make a very long story short, it took many, many weeks of tantrums, social stories and sensory integration techniques to work through the issues, but eventually he did, shoes and all! Once he made up his mind to play football, it was if he knew he was going to have to come through on his end of the deal, that being able to work hard and get through his tactile and sensory issues.

One of the main things that I would like others to learn about Kyle’s story is that anything is possible. If I had listened to that doctor 16 years ago I can honestly tell you that Kyle’s progress would not be at the level that it is now. We have been fortunate that throughout preschool, elementary middle and high school, Kyle has had nothing but wonderful teachers that have embraced him, worked patiently with him, and have helped him to become the confident young man that he is today. Kyle is truly “living the dream” and so are we. I am so proud of all of his accomplishments.



Thank you,



Lisa Weafer

Proud Parent of a Person With Autism

written by:
Karen Nichols, proud parent of a Person With Autism.
Her son is 10 and in the 5th grade.

Matthew was born on July 1, 1999. He had a normal delivery, and, for his first few weeks, was a delightful little guy.

As he grew, we noticed that he hated to be held, and screamed every night for at least 3 hours. It was exhausting. We figured it was Colic.

His first word was not mama or dada but "GO", and in hindsight, this meant "GET OUT OF MY FACE!" The car and grocery stores were torture for him. He screamed from the car seat, to the store, and all the way home, then continued to scream himself to sleep. My marriage collapsed. I was now a single mom. At the time, I was a Firefighter/EMT, and I knew that daycare would be out of the question for this difficult infant, so I opened my own daycare, where I could be with Matthew all the time.

Matthew's language and development faltered. I saw that my daycare children were progressing at a much more rapid rate than my own child. I dismissed this as he was the youngest, therefore the other children were speaking FOR him. He crawled everywhere, didn't take steps until 15 months of age. Few words, only words that needed to be said: "drink, treat,eat, GO"

Matthew was fascinated with his Handy Dandy Notebook, and took it everywhere he went. I bet we bought 100 Handy Dandy Notebooks in his toddler years. He hated clothing, and, even in the wintertime, preferred his diaper and nothing else. Shoes were out of the question. Still, I was oblivious. Hindsight is 20/20. The guilt that I have over this is unimaginable.

Matthew developed his own sign language, and could do simple mathematics with his fingers. His hands were his best friends, he studied his hands and counted for hours on end. He made intricate designs with his blocks and walked all around the table, studying the angles and how the shadows affected his designs. He loved trains. We lived near a train track, and when he heard the whistles blowing, we jumped in the car to watch. He would record the entire event in his notebook. He watched The Weather Channel and recorded each day's weather in a separate notebook. By the time we moved from the house, there were crayon markings on EVERY wall.

First grade was a complete disaster. Matthew hid under his desk and screamed. His teacher had 30 years under her belt, but didn't really know what to do with Matt, so she sent him to the office, where he would continue his meltdown, and return to class. Lunchtime was torture, too loud, noisy, chaotic. So, Matthew would just throw his lunch away, and sit on the playground with his notebook. At his first Parent/Teacher Conference, his teacher, Ms Doty said.."We are certain that your son is Autistic". We asked why. She said that we only had 5 minutes left of the conference. We argued that Matthew is BRILLIANT, he's not retarded. (ignorance on our part)...Conference over.

I came home to my son. He was making an intricate design, a pyramid, out of pennies, counting each one, making sure that they were all "heads up" and perfectly aligned. He is brilliant, I told myself. Autistic children sit in a corner and rock back and forth. My son is NOT Autistic. Matt cried all night, and so did I.

By the next morning, and for a solid month after, it was my duty to learn as much as I could about this thing called "Autism". I searched the internet endlessly, spoke with other moms, had Matthew tested, scaled back my daycare to just a couple of days a week, and became a First Grader. I sat next to Matthew every day in school. His teacher thought that Autism was a "fad". I went to lunch with him and opened his containers, so he could eat. I left at noon, went home, cried. Daily. By the time Matthew made it home from school, a massive meltdown would ensue, followed by a long nap. I became a warrior. NO more crying. Time to fight.

Being the parent of a Human Being with Special Needs is quite a charge. I realized that I could no longer be a firefighter, I mustn't put my life in jeopardy, for as long as my son is Autistic, he will always need me. I reluctantly quit the Fire Department and became a fulltime glass artist. I am 100% available to my son and to his Special Ed team.

I am now my son's Advocate. I remarried, and my husband and I understand Matthew and have nurtured him and supported him and adored him. I am pleased to say that, while Matthew continues to have speech difficulties, doesn't make eye contact, hates stores, Santa, and the Easter Bunny, he pitched for the Holt Rams baseball team this past year. He has no friends, and doesn't really want any. This past summer, he said, "MOM. For my birthday, I want some walkie-talkies". I told him, "yaknow, buddy, if you want some walkie-talkies, you're going to need to go up the street, and see if you can make some friends."

Matthew replied "Mama. You are my friend" I melted.

Touching Interview With A Mother With An Autistic Daughter

My interview with Nancy Nally, Scrapbook Update. She's the mother of a wonderful, autistic girl.

1. Can you introduce yourself and your daughter to my readers?

I'm a work-at-home mom who runs an online media company called Balalaberry Media that I co-own with my husband. Mostly what that means is that I spend a lot of time writing, either for our scrapbook industry trade journal Scrapbook Update or for GigaOM Network's WebWorkerDaily (where I freelance). Being self-employed and working from home allows me to be flexible for Bridget's needs.

Bridget is six and a half, and was diagnosed with autism four years ago. She has been attending school full-time in our local school district since age 3 through early intervention programs. Currently she is in their ASD program at our local elementary school. Academically she is extremely high functioning, above grade level, but she has some severe sensory and motor skill issues.

2. What kind of sensory issues does she deal with everyday?

Bridget is very sensitive to sensory stimulation. On the one hand, she needs constant input but on the other hand, she can only handle certain things. She's extremely sensitive to certain types of noise. Her oral issues are awful - she won't chew anything that is wet. She has severe textural aversions when it comes to food, as well as being a very picky eater flavor-wise. She's also sensitive to the feel of fabrics. She lives pretty much completely in soft cotton knits from places like Gymboree because those and a few polyester pajamas are all she can tolerate.

She needs constant input. We discovered pretty quickly when she was an infant that the only way she would fall asleep was in her vibrating bouncy chair in front of a Baby Einstein video. If we put her in her crib in a quiet room, she would literally scream until she puked. Of course, knowing what we know now about her autism and the need she has for constant sensory input, we understand why that was. Now, most nights she falls asleep with a video running in her room.

The funny thing is that with all of her sensitivities, her most favorite place on earth is DisneyWorld - a place designed to completely overload your senses! She loves the 3D movies, getting whipped around on rides, and especially the fireworks.

3. How does her limited communication affect her interaction with other children her age?

Bridget doesn't interact a lot with other kids. Partially that is due to the communication and partly due to her being used to being by herself. She's an only child so she's used to being by herself at home. It takes someone actively engaging her. Mostly she will parallel play with other kids more than play actively with them.

4. Up to this point, what has been the hardest thing for you to deal with when advocating for your daughter?

Dealing with the school district has been very challenging at times for several reasons. It has felt at times like the ASD kids are completely invisible in the building they are in. During her pre-k years, the entrance the kids used was repeatedly locked at drop-off time. When I went to complain, the assistant principal started lecturing me that I wasn't supposed to be dropping my kid off at that entrance - because he FORGOT that there was an entire program of kids that are supposed to use that entrance every day! When I had difficulty reloading my daughter's cafeteria account, I called the cafeteria for help and was told I was being denied access to the system because the cafeteria didn't feed the pre-k kids. Actually, they fed them twice a day!

The building is brand new, built in the past couple years, and when my daughter moved up into the regular school population I discovered that when it was designed there was no handicapped drop-off area designed into it. The kids in the physically handicapped and autism programs have to be handed directly over to staff members instead of just going to/from classes themselves like the rest of the kids. The building wasn't designed with any area to accommodate the handicapped buses offloading wheelchairs or parents having to meet staff members to hand over their kids directly. Those areas had to be jury-rigged after the construction. It wasn't until this school year that the principal finally came up with a solution for the handicapped car rider area that makes me finally feel like I'm not taking my life in my hands every time I drop off or pick up my daughter.

The administration also doesn't understand the challenges of dealing with a non-verbal (or essentially non-verbal) child in a school. They don't understand that extra effort needs to be made in communicating with the parents of those children and in making the parents of those children feel secure in the environment their child is placed in since their child can't communicate if something is wrong. Last school year, our daughter's teacher took medical leave and then retired mid-year. She was gone from the classroom for two weeks before I found out about it when I showed up for an IEP meeting and she wasn't there. The aides who brought my daughter out to the car every day said they had been given the distinct impression they weren't supposed to share that there was sub in the classroom. When I confronted the sub who took over the classroom about why he didn't announce his presence in the room to parents, he said it wasn't his place to tell people the teacher might not be coming back. I had to explain to him and to the administration that you don't have to tell us the medical leave might be permanent, but as parents we need to know who is in our child's classroom on a daily basis - especially when our children are incapable of telling us that themselves. Several other incidents have occurred where the administration has erred on the side of keeping things to themselves rather than sharing information with parents, or of disregarding parent concerns, not understanding that it is imperative for parents of non-verbal kids to really trust their child's classroom arrangement.

Several years ago the district made a move to implement uniforms in schools. I fought it tooth and nail along with a group of other parents. One of my concerns was that many of the autistic kids, like mine, couldn't tolerate the fabrics they would be required to wear. The board's response to that issue being raised was that they would exempt special needs kids via their IEP's if necessary. They didn't seem to understand or care that those kids running around the school in regular clothes with everyone else in uniforms would be the equivalent of putting a neon sign that says "I'm handicapped! I'm different!" on those kids. The ASD kids have a hard enough time fitting in during inclusion programs without their clothes giving away who they are from 100 yards! But the school board was on a mission and our kids were in their way. They were prepared to make them collateral damage to get what they wanted. We eventually defeated the uniform agenda but the most disappointing thing about that entire fight was that the district's ESE department, whose job it is to supposedly advocate for the special needs kids, rolled over and played dead and signed off on the uniform plan.

Are you getting that I could go on and on about dealing with the school district?

5. What is the greatest moment to date that you have had with your child?

My greatest moment with Bridget has nothing to do with her autism. It has to do with the fact that she is here at all. My first child was stillborn due to an auto-immune condition that I have that was undiagnosed at the time. I nearly died giving birth to him. My pregnancy with Bridget was very high risk and very high intervention. She was born on the Friday of Mother's Day weekend in 2003. Moments after she was born, she developed breathing issues and suddenly a NICU team was in my room whisking her away. We were terrified. She was diagnosed with a pneumothorax (air in the chest cavity, probably from the vaginal delivery pushing on her chest) and spent her first two nights in the NICU. The doctor, who had also delivered our son, was quick to get the pediatrician down to my room to reassure us she was alright and they got me into a wheelchair to the NICU very quickly. But the best moment...was on Sunday, Mother's Day, when they released her from the NICU and brought her to my room and she was placed in my arms and we knew she was really going to be alright. That was the best Mother's Day gift I could have ever gotten and I don't think anything could top that.

Interestingly, even that problem could be linked to Bridget's autism possibly. Bridget's head was unusually large for her birth weight - a characteristic that is beginning to look common in autistic children. The pneumothorax was likely caused by the extreme pushing that I had to do to get her oversized head out. Bridget was less than 6lbs at birth but earlier that week based on her head and leg measurements on ultrasound she had been estimated at 7.5lbs. Her large head threw off the calculation.

6. Is there one thing that you would love for people not familiar with raising an autistic child to know?

I think a lot of people unfamiliar with dealing with autism think that these kids are mentally or emotionally handicapped when that isn't the case (or isn't their primary problem at least). I think there needs to be more understanding of the sensory disturbances that autistic people experience, and how a lot of the seemingly problematic behavior in other areas flows from the irritated or malfunctioning senses. They need to understand that my child isn't dumb, it's just that her auditory processing is slow and so she can't understand the question you are asking her.

A Moms View of Vaccines And Therapies

As promised, here is my second interview with Carol Greenburg.

1. What's your opinion on the question of vaccines causing autism?
There is no credible scientific evidence to support a vaccine/autism connection. I do not personally believe that vaccines cause autism. That said, if there is any event after which your child shows a fundamental and persistant change in behavior, you job as a parent is to investigate whether there might be a chain of causality. That's just good parenting. So leaving vaccines per se out of the discussion, let's say my kid was talking a mile a minute, and then he ate a pancake and hasn't said a word ever since. It's just common sense for me to want to know whatwas in that pancake, and what was going on in the restaurant, and who cooked it, and who served it. Ultimately, after a reasonable investigation of those surrounding circumstances, I would move on and stop focusing on what may or may not have caused his speech loss and focus on whatever is most likely to help him regain his speech.

2. Do you follow or have you used, any kind of special diets or nutritional supplements?
We know many people who do use special diets and supplements with varying results. That option is not as open to us as it is to some other parents, because Arren has many food aversions and is a hypertaster;so we can't just give him a gummy vitamin or slip a supplement into his juice. Back before he decided he hated orange juice and would only drink apple juice, we were able to buy an orange juice he liked that was supplemented with Omega-3, which some evidence suggests reduces inflammation in the brain. Honestly though, it's hard to tell whether Omega-3 was having a significant effect, because overall, between all of his various therapies, Arren is making steady progress. We're grateful for this, and wish we could trace what therapy is causing what improvement, but I doubt we'll ever know.

3. What kind of therapies or programs have had the most affect on your child?
I feel strongly about doing whatever works and so do his teachers,so we all work together very cooperatively. Arren attends an ABA-based school. ABA scares a lot of autistic adults, because they assume it's dehuminizingly Pavlovian, but it doesn't bother me because when its done properly, it can actually be a very flexible individual approach. Any child, autistic or not, has interests that tend to motivate or demotivate him or her. Autistic children's interests are deeper and more passionate if more unusual. So no matter what you callthe type of therapy, ABA, Floortime, or anything else, if you can capture and hang on to an autistic child's particular interest(s) some quality education will happen. Arren is a jock; he's never met a sporthe doesn't like. Whatever they want to call their method, his teachers have got to keep him moving if they want get and keep his attention.That's counter intuitive to folks who have a rigid idea of thereapy as involving a kid sitting in a cubicle doing discrete trials all day. But my kid is more likely to work on his reading hanging upside down from a rope ladder, so that's what works for him, me, and his teachers.

4. Are there any particular therapy or treatment programs that you strongly oppose trying and why?
I don't think there's any diplomatic way of saying this, or perhaps I just don't feel like trying. Chelation is ineffective, dangerous and oughta be outlawed. In general I'd say the more you subscribe to the disease/cure model the more vulnerable you make yourself to snake-oil salespeople. The less you focus on cures and the more you focus on services to address comorbid conditions, the better off you and yourchild are.

About Carol Greenburg

I am an adult with Asperger's Syndrome, the mother of a seven-year-old severely language-delayed autistic child, and executive director of a consulting company that helps parents of children with disabilities in get services for their kids. As part of a partnership with the Brooklyn Parent Center of BCID, I speak frequently at parent support groups, community-based organizations, and at universities all over Brooklyn. The motto in our home, and office is "Not sick. Not Broken. Just Neurologically Outnumbered. To find out more about me, my family and my work, please visit my company website www.bklynsnc.com, my company's Facebook page at Brooklyn Special Needs Consulting, or follow me on Twitter under the username "Aspieadvocate."

An Asperger Adult Mom With An Autistic Child Interview

My latest interview is with Carol Greenburg. She has the unique perspective of both an indiviual with autism and a mother of an autistic child. Here are the questions and answers from the interview. I enjoyed getting to know Carol and her child so much, that I also conducted a second interview with her on the subject of vaccines and therapies. That will be posted tomorrow.

1. As an adult with Asperge's Syndrome and a mom of an autistic child, you have a unique perspective. Do you think you understand your child better than most autism parents?

I feel I do understand my son pretty well, though I have no basis of comparison to the level of understanding between other mothers and sons. I can say that I think my own Asperger's gives me a bit of an edge in what I decide to worry about and not worry about. I often observe self-stimulatory behavior in my son that exactly mirrors the stims I used for self-calming at that age, and am therefore less likely to overreact and automatically block "odd" behaviors. I believe that moment of thought before saying "Stop it" makes for a more relaxed environment in our home. If he starts singing the same song over and over to himself, which is one of the stims I had at his age, but no longer do, I try to engage him rather than just telling him to stop, which leaves me at least feeling good that I just had a nice interaction with my son rather than frustrated that I can't make him behave in a more typical way.

2. Getting services for your child can be extremely difficult for most autism parents. What do you recommend is the first step in attaining services for your child?

As a special education lay advocate, I feel duty-bound to answer that by simply advising everyone to hire me Here's a more serious answer, though: Think rights Talk Responsibilities. The law is on your side a lot of the time, so there's a great temptation to run into every IEP meeting waving statutes and yelling about how your kid's and your rights are being violated. Maybe they are, but the point is not to express your anger, however entitled you are to it, the point is to solve the problem. That means that no matter what the school has said or done, you need to excercise enough self-control to say "I recognize that my child's education is ultimately MY responsibility, and that you have the training and expertise to help me fullfil that responsibility. You [the district, the principal, the teacher] are a valuable resource. What can I as a parent do to partner with you to get access to the wisdom that your training and experience can yeild?"

3. What kind of services/therapies do you think are an absolute necessity for an autistic child?

I'll say the same thing the law says: The child gets what the child needs. Children and their needs are completely individual and they change over time. My son and I are both on the autism spectrum: I had no speech delay. He has a severe speech delay. He needs as much speech therapy as we can get him. Speech therapy would have been a complete waste of time for me at his age; all I did was talk. But I was constantly saying the wrong things to the wrong people. What I needed was the kind of social skills intervention, he's already gotten. At only seven he's immensely popular, never been bullied, and thanks to all of the OT he's gotten, he's actually more of a jock than anyone in our family going back generations.

4. Who pays for these services? The parents, insurance, school? When should parents draw the line at paying for therapies? Do you believe that it is fair on them and the child to be bankrupt and to lose their homes in order to support therapy for their child? (I've heard from parents that think it is and those who think it isn't.)

I don't feel I could function as an advocate and say I believe parents should foot the bill for everything. First of all, that's simply impossible in most cases. I don't personally know anyone rich enough to pay for the level of service my son gets without reimbursement. However, there are times when parents, who are fighting the good fight as they should, do need to pause and ask if they're looking for money from the best possible sources. True, your child has the legal right to a free appropriate public education, which encompasses much more than most people realize. That does NOT, however, mean that your automatic response to any need should be to hold out your hand to the local school board. Medicaid and medicaid waivers are overcomplicated to get, which is probably why they're underused, but if you can get your kid into that system, it opens up a world of resources. In the end, schools are more open to the requests of parents who also look elsewhere for funding. As far as insurance is concerned, you can't count on it, but you should be able to. The total lack of coverage for autistic children is a national disgrace, so if you have any energy left over from fighting for your child's individual needs, I can't think of a better cause than autism-specific insurance reform in which to pour that energy.


About Carol Greenburg

I am an adult with Asperger's Syndrome, the mother of a seven-year-old severely language-delayed autistic child, and executive director of a consulting company that helps parents of children with disabilities in get services for their kids. As part of a partnership with the Brooklyn Parent Center of BCID, I speak frequently at parent support groups, community-based organizations, and at universities all over Brooklyn. The motto in our home, and office is "Not sick. Not Broken. Just Neurologically Outnumbered. To find out more about me, my family and my work, please visit my company website www.bklynsnc.com, my company's Facebook page at Brooklyn Special Needs Consulting, or follow me on Twitter under the username "Aspieadvocate."

What Is Early Intervention?

I recently had a parent in desperation ask me what she should do. She had taken her daughter to the doctor several times. She knew in her heart that her daughter who was born at 32 weeks and was not developing as her peers at 3 had some sort of a disability, probably Autism, yet her doctor told the mother to wait a little longer to let her daughter catch up.

This is not an unusual scenario. It is played out many times daily in Pediatricians offices across the country. Since this child was born prematurely, in many states she would have automatically received early intervention at birth. I will explain early intervention in a minute. As a Child Development Specialist with a Masters Degree and over 17 years experience working in Early Intervention and Preschool with children with Special needs and their families. I gave her the following advice; First, parents know their children better than anyone else. If you suspect something is wrong, there usually is. Second, your child needs to be assessed. Find out who in your state’s State Interagency Coordinating Council (SICC). In California our SICC is the Regional Center. Call your local Elementary school and ask them if they know who your state’s SICC is. If they don’t know, have them refer you to the District’s Special Education Department, they will know.

Once you have found the SICC, you will want to tell them what you have seen, and then ask for an assessment of your child. The earlier you get this done, the better. The assessment by the SICC will be free, but you may wait up to 4 months to get it done. You can also have an assessment done by a Developmental Pediatrician, Occupational Therapist, Child Development Specialist or Child Psychologist. In California, the preferred assessment by our SICC is the Bayley III. You will have to pay for this.

So, what is Early Intervention you ask. The definition from the Early Intervention Dictionary is: “Specialized services provided to infants and toddlers who are at–risk for or are showing signs of developmental delay. Services emphasize the continued development of basic skills through planned interaction that will minimize the effects of the baby’s condition. Several types of qualified professionals may plan and implement early intervention services, provided in conformity with an individualized family service plan. These professionals include case managers, infant educators (who use developmental play activities to promote the infant’s acquisition of basic skills), physical or occupational therapists, speech and language therapists, audiologists, social workers, or individuals who rare trained to help infants and young children with acquiring new skills and behaviors, or to provide other services such as family training, screening, assessment, or health care. Early intervention services are provided under public supervision and at no cost (except where federal or state law provides for a system of payment by families.”

Early intervention was established in 1986 as part IDEA (Individuals with Disabilities Education Act) and established the Part C (Early Intervention) program. It was reauthorized in 2004 when President Bush signed legislation reauthorizing IDEA. The current IDEA 2004 Statute (P.L. 108-446) for Part C .
Part of Idea is Child Find. In the scenario above, the doctor should have referred mother and baby at birth to the state’s SICC because the baby was premature and at risk for a disability. If the state’s law’s didn’t include at risk children, at the very least, he should have been watching for signs that the baby wasn’t keeping up developmentally. The problem here is that Pediatrician’s are not educated in what developmental milestones are for children. They know what correct height and weight is, but now how many words a child should have at 9 months or when they should turn over or reach for things. That is a Child Development Specialists role. So many, many children fall through the cracks until they enter Kindergarten. Fortunately the CDC, Center for Disease Control has stepped in with a program to educate Doctors and the public with their “Learn Signs, Act Early” Campaign. . On their website, you can view or download the various materials for the "Learn the Signs. Act Early." Campaign designed for parents and health care professionals to learn some developmental milestones, and to ask questions should a delay appear.

If your child qualifies for your state’s SICC services, you will be assigned to a Service Coordinator. Your Service Coordinator will meet with you and write up an IFSP, Individual Family Service Plan. The IFSP contains information about the services necessary to facilitate a child's development and enhance the family's capacity to facilitate the child's development. Through the IFSP process, family members and service providers work as a team to plan, implement, and evaluate services specific to the family's concerns, priorities, and available resources. This plan is about the entire family and what they need in order to help the infant/toddler to reach their potential. You may need respite care (skilled care giving service which allows the parents time away from the house) along with Occupational Therapy and other early intervention for your child.

While you are taking this journey into early intervention, you, the parent will have a lot of feelings to deal with including, denial, grief and being overwhelmed. Please look into support groups in your area where you can talk to other parents who have been through what you are going through, and came out the other side still standing and with an in-tact family. There are also many online groups for every disability. Please build a support group for yourself. We all need one whether we have a child with a disability or not.

-written by:
Faith Golden MA
It’s Aparent, Parenting and Behavior Specialist
Early Childhood Special Educator

Ms. Golden is known as a cross between “Supernanny” and the “Dog Whisperer.” She has a Masters Degree in Early Childhood Special Education, two teaching credentials and over 17 years experience working in the field. Ms. Golden knows the Special Education System inside and out. She has extensive training in Behavior analysis and modification and the finesse necessary to teach parents the tips they need to be effective parents while empowering them to become the parents they always wanted to be.