May 4, 2013

Teacher Appreciation Week

Posted in Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , at 10:38 am by autismmommytherapist

Summer 2012 Part 1 002

Today’s post is in honor of Teacher Appreciation week, and is dedicated to the teachers, therapists, administrators, and support staff who work with all of our children.

 

Dear Educators,

 

It’s been almost nine years since my eldest son was diagnosed with autism, and it would be the understatement of the year to say it hasn’t always been easy. My family’s journey with autism has comprised two states, dozens of doctors, therapists, teachers, and Early Intervention practitioners, and by this point I feel as if we’ve seen it all.

For us, however, there has been one shining thread of competence woven throughout all of our trials, and I feel compelled to speak of it today.

In essence, all hail to the teachers.

It hasn’t all been smooth sailing of course. There were a few IEP meetings along the way where I cried (one was at the thought of my eldest son moving on to a new teacher in the coming school year, perhaps that one shouldn’t count). Frustrastion regarding my boy’s academics and behaviors has intruded on occasion, and a few times I felt I wasn’t truly being heard.

For the most part however, my family and the bevy of educators assigned to both our boys have been able to play nice with each other, and for this, among other things, I am eternally grateful.

I’ve felt that the dedicated men and women who’ve worked with my sons have respected them, pushed them when appropriate, and equally importantly, have liked them (and trust me, at times both of their behaviors have not been particularly likeable).

Truly, none of them are paid enough.

So today, I’d simply like to say thank-you. Thank-you to the speech therapist who stayed up all night to reinstall the programs my oldest son deleted from his iPad, just because he thought erasing them all would be fun.

Thank-you to the child study teams who tweaked, manipulated, and created the perfect IEPs for seven years for my kids, then made certain they were enacted. Thank you to the administrators who gave us time during that long, awful period when Justin resumed his aggressive state last year, waiting months while we figured out how to quell the terrible tide of his anger without having to remove him from his school.

Thank-you to the aides, the life-blood of any classroom (I know, because I’ve been one), who’ve not only tolerated my sons’ non-compliance at times, but have regarded it as a worthy challenge.

And last, but certainly not least, thank-you to the special education and regular education teachers in three different districts (it takes more than one village sometimes) who have challenged my children, believed in them, loved them, and put up with me to boot.

The latter statement should earn them all the medal AND the monument.

You have not only made a tremendous difference in the lives of my sons- you, through your kindness, your commitment, and most importantly perhaps, your competence, have given my family a life.

For once, all I have left to say is thank-you.

 

April 28, 2013

The Nod

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , at 10:11 am by autismmommytherapist

Easter 2013 025

It’s Thursday morning, just a regular day before school starts, and I am trying for what seems the hundredth time this week to figure out something my eldest child will possibly consume for breakfast. Over the course of the past seven days I’ve hawked three different cereals, pancakes, waffles, even French toast, all to no avail.

I hate sending him to school on an empty stomach, but I seem to have run out of options as I whip eggs and milk into the frothy concoction which will soon fill up my stomach. I’ve offered Justin eggs before, which he has regarded with all the enthusiasm of a patient approaching an overdue root canal. Today, just for the heck of it, I turn to look at my tall son who is immersed in his DVD player and ask “Justin, do you want eggs?”, fully expecting no response whatsoever.

And in mid egg-flip, my son looks me in the eyes and nods an emphatic yes.

I fling the spatula down on the unsuspecting stove, and run over to my boy, afraid I’ve misinterpreted the first time Justin has answered a “yes or no” question in our home. I turn off the DVD player and angle him toward me, and pepper him with queries I’m certain he’ll soon find tiresome.

“Is your name Justin?” (nod yes). “Is your name Zachary?” (nod no). “Do you think your mom’s gone crazy?” (okay, I didn’t really ask that one, but contemplated it for a moment there). Truth is, I asked about a half dozen more close-ended questions, and he responded appropriately every time. I did what I lovingly call the “happy language dance”, rescued my almost-doomed eggs, and served my son a generous portion of my take.

First a few spontaneous exclamations of “Mama”; then requesting me unprompted on the iPad; now this. As I drink my orange juice, I admit, I’m a bit verklempt at these new developments.

I recently read a study informing me that while researchers previously thought that the language window swung firmly shut on most autistic children by age four, newer studies have shown that most children on the spectrum do acquire some language. In fact, the study says that almost half go on to be fluent. While we’ve kept Justin in private speech therapy and continue to work with him at home, by the time he turned nine and had shown no real progress, I began to let my dream of him having some semblance of functional speech go by the wayside.

My disappointment was somewhat mollified by the fact he is able to use his iPad quite functionally, particularly in school where he employs the device for requests and academics. In those dark, desperate days of toddlerhood when his primary method of communication was digging his fingernails into my tender flesh, I used to pray for any methodology whatsoever which would facilitate communication, be it technology or a Ouji board (again, those were desperate days).

As he’s grown and has shown great aptitude for various media my fears we’d never share even the most rudimentary standards of language disappeared, and I’ve grown quite fond of ProloquotoGo, the program through which he is able to make his needs known. Still, I admit deep in my soul I longed for a word or two, or even for him to have the capability to answer those simple yes and no queries without running to his device.

Now, he can.

There’s a great article on the Autism Speaks blog by Geri Dawson, outlining new findings about speech in autistic children, and nine other things we know about autism that we didn’t know a year ago. Among those findings, researchers are developing medicines to address the core symptoms of autism, namely communication deficits, social withdrawal, and repetitive behaviors.

Symptoms of autism are now being detected in children as young as six months of age. Prenatal folic acid, taken in the weeks before and after a woman conceives, may reduce a child’s autism risk. We are slowly making progress in deciphering autism’s many mysteries. My son, after a long, sometimes agonizing wait, is making progress too.

His mother couldn’t be more proud.

April 19, 2013

Autism Awareness Month- A Celebration of Autism Advocates

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , , , , , , , , , at 9:46 am by autismmommytherapist

vince scanelli

Ed. Note:  April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three New Jerseyans who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism.

As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals.

Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. Below is the third interview in the series.

Vincent Scanelli

Vincent Scanelli is the president of the non-profit Someone Special Needs You (SSNY), as well as the president of the Douglass Organization for Occupational and Related Educational Services, Inc. (DOORS) program at Rutgers University. He serves as Vice-President for Ride for Autism, a group home liaison for New Horizons in Autism, and as a Community Work Partner for the Monmouth County Chapter of the Arc of New Jersey.

Vince is the owner of the Colts Neck Insurance Agency, and has twenty-five years of expertise in financial planning as well as specializing in special needs and estate planning. He has two daughters, and an adult son on the autism spectrum.

Kim:  How did you come to be an autism advocate?

Vince:  Honestly, it was because my son was born. My family was born into autism, all we do is what we’re supposed to do for our kids. I really give credit to people who do this and don’t have kids with autism.”

Kim:  How did SSNY and your future group homes come into being?

Vince:  My son Angelo showed me the way. When he was little his mother and I wanted him to have peer relationships, but there was nothing out there, no groups. I got together with a couple of other parents and created SSNY, where kids with disabilities are paired with neurotypical teens for various activities.

We wanted Angelo and other kids to be able to get together and have some peer and social interaction, so we started doing monthly events. As Angelo has aged, our focus has shifted off into group homes. After this I’ll probably investigate work programs.”

Kim:  How did you get started with creating group homes?

Vince:  We started thinking about doing all this back when Angelo was thirteen, and he’s nineteen now. A friend of mine who is a planner knew I wanted to do a farm, and he knew a builder who was involved with affordable housing. We then connected with New Horizons in Autism, and got a grant from Marlboro, NJ to move forward with the plans.

Marlboro gave us part of their Council on Affordable Housing (COAH) funding, plus we partnered with a special needs housing trust fund (a state program). After that we would be able to purchase a house through New Horizons in Autism.

Everything was approved in July, but now the plans are stalemated, and we hope to move forward soon. We have enough money to buy a house, renovate it, and put three adults in it.

Kim:  What do you envision for the property you want to turn into a farm?

Vince:  We need about two million dollars to complete everything, but the property is ready, it has been donated by a large development called Overbrook Farms. It sits on twelve acres at the end of a cul-de-sac, has two barns, and it’s just beautiful.

It will have ten beds, two wings for five adults each. Since we have the barns I hope we will be able to do many different farming activities, raise alpacas, maybe have horses, and host events. Hopefully we’ll get the community involved in it as well.

My goal is for the adults to work the farm. I’d love to see the farm provide jobs for the people who live there, and for people in the community as well.

Kim:  What are your dreams and plans for your son over the next five-to-ten years?

Vince:  I just want him to be happy. I want him to be safe, have a good quality of life, and be the best person he can be.

April 12, 2013

Autism Awareness Month/Celebrating Autism Advocates

Posted in AMT's Faves, Fun Stuff tagged , , , , , , , , , , , , , at 10:03 am by autismmommytherapist

POAC Gala 009

Ed. Note:  April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three New Jerseyans who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism. As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals. Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. Below is the second interview in the series.

 

Gary Weitzen

Gary Weitzen is the Executive Director of POAC Autism Services (Parents of Autistic Children), which is the largest provider of free autism training and education in the state of New Jersey. Gary came to POAC with twenty years experience in the risk management field. In addition to his duties at POAC, for the past thirteen years he has worked for an autism program that teaches life skills to adults with autism. Gary currently serves on the New Jersey Governor’s Council for Biomedical Research. In the past he has served as New Jersey representative for Unlocking Autism, and Vice President of Princeton Autism Technology. He is frequently called upon by the media to provide his expertise on autism, and has given presentations to tens of thousands of people across New Jersey. Gary has three three children. His eldest son Christopher has autism.

Kim:  How did you come to be such a strong autism advocate?

Gary:  It all started with my son Chris, who is eighteen, and was diagnosed at age three-and-a-half. Before Chris, I had never known another child with autism. Just after he was diagnosed I attended an autism conference, and I looked around and saw a thousand other people sitting around me, all there for the same reason. I remember the presenters said they didn’t know anything about our kids back then. That’s when I knew I had to do something for the kids who had autism at that moment.

Kim:  You are the Executive Director of POAC. Can you describe the services POAC provides to children, parents, teachers, and law enforcement officials?

Gary:  POAC provides training for parents and families to help increase functional communication, decrease problem behavior, and increase socialization for their children with autism. We also provide training for teachers, paraprofessionals, and other service providers in evidence-based teaching procedures for individuals with autism and other developmental disabilities. Basically, we help teachers become even better educators for students on the autism spectrum. We also provide training to members of the general community who come in contact with individuals with on the spectrum every day. Through our Autism Shield Program we’ve trained 14,000 police and firefighters, and every year we get calls saying the raining saved the life of a child with autism.

 

Kim:  What would your ten-year plan for POAC include?

Gary:  I have some big ideas. I’d like to see us have a large facility or center, with a gym and a lecture hall for trainings, and a stage where the kids could put on plays. It would have a huge kitchen, and a computer center. We would open our doors to kids and adults with all different disabilities, that’s how we are. It would cost a few million dollars, but could make such a difference in kids’ lives.

Kim:  What are your dreams for your son?

Gary:  Chris has come so far. One year from now I won’t have changed much, but Chris will have made even more progress. Over the next ten years I imagine him getting a job, getting a paycheck, and paying taxes. Right now about 80% of the autism population is unemployed, and yet the vast majority of people with autism could contribute to society. We know what we need to do, and with the right funding, and the right people at the table, we could do it. Chris’s life is nothing but joy. He’s happy, and that’s all that matters.

April 6, 2013

Celebrating Autism Advocates

Posted in AMT's Faves, My Take on Autism tagged , , , , , , , , , , , , , , , , , , at 11:41 am by autismmommytherapist

Bobbie 002

April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three advocates who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism. As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals. Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. All three were recently interviewed to share their experiences. Below is the first interview in the series.

For the past two decades, Bobbie Gallagher has been advocating for autistic individuals. Her actions have led to positive changes in public schools, investigations into the high prevalence of autism in her home town of Brick, NJ, and federal legislation to support autism research and care. She was recently honored by U.S. Representative Chris Smith of New Jersey, who successfully petitioned to have the American flag flown over the US Capitol in honor of her autism advocacy. Bobbie is a Board Certified Behavior Analyst (BCBA) and owner of the Autism Center for Educational Services (ACES), which assists parents and educators in developing behavioral programs for autistic children (www.autismcenterforeducationalservices.com). Bobbie is the mother of three children, including a twenty-one-year-old girl and a nineteen-year-old boy with autism.

Kim: How did you come to be such a strong autism advocate?

Bobbie: “There are really two main reasons. First, we have two children with autism, and there is no autism in our family. We can trace back our family tree a long time on both sides. I kept thinking something had to have happened. My husband and I got involved with a parent support group run by POAC in Brick, and we realized that the numbers of children with autism in our town had grown so much we had to move the support group to a much bigger room. It motivated me to find out what was happening in Brick.”

“I soon found out that life outside our home was much harder than inside because of all the people we had to deal with to get help for our kids, and to investigate this cluster in Brick. We eventually made it all the way to the federal government with studies conducted in our town, but nobody gave us any answers. I’ll never forget receiving a brochure from the Physicians for Social Responsibility, who sent us a document entitled “Inconclusive by Design.” We never did get any reasons for why there was such an increase, but I’m very proud we made it to the federal level with the investigation.”

“The second reason I became such a strong advocate was due to the public school system. We sent our first child with autism out of district, but decided after a while we didn’t want her there anymore, and didn’t want to send our second affected child there either. That was the first time someone told us our district had its own program. After that I started bringing the New Jersey Administrative Code with me to meetings, because people didn’t even know what our kids were entitled to. I’ve found the hardest part about continuing to fight all the time is that we may get change for one child, including a better education and better services, but the schools think that what they provide for five other kids is good enough, and they don’t make broad changes.”

Kim: Tell me a little about your work with U.S. Representative Chris Smith of New Jersey.

Bobbie: “Chris got involved with us right away after we met with him and showed him surveys we had done about the numbers of autistic individuals in Brick. He called the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) to get them involved, and then we all met with officials in Washington, DC. He helped open doors for us. With the assistance of co-chair U.S. Representative Mike Doyle of Pennsylvania, he founded the bipartisan Coalition on Autism Research and Education (CARE).

He was also the primary sponsor for the bill HR 2005, the Combating Autism Reauthorization Act (CARA). This bill was signed into law (Public Law P.L.112-32) in 2011, and extends the Combating Autism Act of 2006 for three more years. It was a follow-up to his Autism Statistics, Surveillance, Research, and Epidemiology Act (ASSURE, Title 1, P.L. 106-310), which allowed the creation of regional centers of excellence in epidemiology and autism surveillance. Although autism had the highest numbers in the disability world, in the past, funding for other disabled groups always surpassed us. This was the first time we surpassed them in funding dollars, and it really helped.”

Kim: How does it feel to have the flag flown at half-mast over the US Capitol in your honor?

Bobbie: “It’s probably my proudest thing, even though I didn’t get to see it! I found out at the annual POAC Gala, but I was just in shock there. A couple of days later it kicked in and I just thought “that is really awesome!”. It’s my proudest moment, it means so much that people recognized what we had done. It was nice to get the recognition for our efforts. If we need to be called in to do something again, we would do it.”

Kim: Where do you hope to see Alanna and Austin in ten years?

Bobbie: “We will probably live in a different state, somewhere warmer where they can enjoy being outside. They’ll be living with us, and hopefully we’ll have enough support for them! I don’t foresee that they’ll be employed, but I do see them being happy. Alanna in particular has a full day, and a full life- she really enjoys it. Austin will always be the bigger puzzle. He is more difficult behaviorally and medically, and challenges us much more. Because of how challenging he can be, he really drives me to do what I need to do. He makes us feel like we always have to do more.”

Autism Center for Educational Services (ACES)

http://www.autismcenterforeducationalservices.com/

(732) 840-1888