Nicholas is Graduating, Middle School Part 2

Nicholas is Graduating, Middle School Part 2
I can’t believe it's Nicky's graduation day! I jumped out of bed, got Evyn and Nicky ready to go, and ran off to school. I wanted us in line by 7:45 to make sure we got a good seat for the 9:00 am program.

We arrived happy, anxious, and just in time. I reached into my purse to find that I had forgotten the tickets. DUH!!! I dropped off Nicky and his therapist, and asked Evyn to stand in the line that was already forming. A few minutes later, my cell phone rang and Nicky's therapist said "An administrator said "He can't graduate in that!" Seems the suggestion that the kids wear a plain white shirt was in fact not a suggestion, but a mandatory dress code. Flustered, I got home found the tickets and looked to see if any of his white shirts were plain enough. (Note to self...stay calm) A few minutes later, his therapist called to say his teacher had a shirt, and he was being dressed "in code." I drove back to school irritated that he could not wear the incredibly handsome blue shirt and white vest that looked so good on him. Realizing that this frustration was really about me, my feelings and not Nicky, I decided to let it go and enjoy the day.

So I let go and let myself enjoy the ceremony. The graduation was phenomenal. It was a two hour program where a smiling happy Nicky blended in with his typical peers, his friends. He was totally unnoticeable, a major accomplishment! There were no loud verbal utterances, no funny sounds, no frantic jumping up and down, no running from his seat. There he was throughout the entire program, participating, smiling, indistinguishable from his typical peers. Amazing! Today was the first time I had EVER seen him in a school program where he did not stand out as the ASD kid. It was the first time I could see how much he wanted to be there. It was the first time I have seen him look truly proud. Amazing progress, a celebration in itself.

As I reflected, I knew the shirt fiasco was actually a good thing, because it distracted me from the nervous, wildly emotional mommy place where I had begun my day to a place where I was just proud!

After the ceremony, I threw a graduation party at the house. The party was complete with therapists who have worked with him over the past five years, kids, family, water balloons, barbeque and chaos. It was perfect, fantastic, and everyone celebrated the teams success that contributed to this special moment, this tremendous accomplishment. I dashed around until everyone left at 9:00pm and I went upstairs and threw up.
Wooo Hooooooooooooooooo!!!!

Nicholas is Graduating, Middle School Part 1

I went to Nicky's 5th grade graduation celebration party. I walked in to see that his teacher had transformed a class room into a disco for the kids. It was very cool, very fun, and very typical. The classroom’s overhead florescent lights were off, and in their place rotated a flashing disco ball. Below the ball were lines of happy, laughing kids learning the electric slide. Immediately I thought, "Where's Nicky?” I knew the room must have put his sensitive sensory system on overload. I was right; he had experienced a meltdown, and his BI had taken him outside to run around the track. There is a lot of change, excitement and energy in the air. Today it’s a party, tomorrow the graduation, and the next day no more elementary school.

We are leaving this safe haven, and I have that "mommy knot" in my stomach. Maybe I should run around the track! :)

I worry that middle school will be an insensitive place filled with greater expectations and Nicky won't be able to hide among the second language learners and kids who are at different stages development. Middle school is busy, fast-paced, boys snap girls’ bra straps, they form "clicks kids have up to 6 teachers per day, they begin dating, the pressure of college begins, and social activities become everything.

Nicky still looks like a little kid. His clothes look hip because I dress him, not because he cares. If he is interested in girls, I can't tell. If he wanted to talk to one, he couldn't do it. He would just jump up and down and make noises, stare at his hands and try to poke her in the tummy. Hot...NOT. He's not interested in any sports, and his passions are puzzles, letters, signing, animals, writing lists and videos - hardly middle school "In" stuff. At this moment, I just can't imagine how he will fit in. I can't imagine how he will feel because he doesn't have the ability to verbalize many of his feelings. I'm worried for him. His classmates in elementary school have loved him and taken care of him, and I wonder if they will still look out for him with the social pressures of middle school. If not, how will that affect him? Will he feel the pain of his friends moving on? Is now the time that he is going to become aware of how he is different? Is the time coming when I have to explain autism to him? Will he be sad and not able to tell me? Will I be able to help? Will he plateau now that he’s out of elementary school? Is a cure out of sight for him?

He's not scared. He doesn't really know what middle school is, because he hasn't been there yet. Clearly, I’m the one who is not emotionally ready for Nicky to cross this bridge. I’m the one who is worried about the future I cannot see, not Nicky. He doesn't have any of my dread, and I envy him that. He's just anxious wondering if the new school will have a library and eyewitness videos. Nicky is fearless. He will go to middle school and he will have good days and bad days just like elementary school.

As I think about it, we are as prepared as we can be. I've worked for months to shift his support team to be all male, so he can learn the man stuff that the girls can't teach him (you might want to read my post about urinals - very funny). We have the best male therapists on the planet who will be with him everyday. We even have one big guy, who is so cool the kids love to hang out with him. And he loves Nicky. I know Nicky will be safe, and his team will continue to protect him, teach him and create opportunities for him to make friends and fit in.

Some moms have told me that their teenage kids made some of their greatest strides around age 11. So that is the picture I will hold up - not the image of my kid in a corner alone, sad. Truth be told, no one around Nicky would let him sit in a corner alone, and Nicky can't sit still for more than 10 minutes anyway! I don't have to worry about that. Nicky will be okay. We will all be okay. Here's to the future and possibilities that are yet unknown to us.

Evyn Left for Japan Today

Today has been an emotional day. Two icons passed away, Farrah Fawcett and Michael Jackson. And, totally unrelated, but emotional for me, today is the day my girl left for Japan. I always viewed Michael as fragile, but didn't expect him to die so suddenly. Farrah's struggle with cancer unfortunately was not just her battle, but put out for the tabloids to exploit, connecting everyone to her pain on some level. The whole day was surreal. Now it’s 8:30. I’ve put Nicky to bed, and I feel the emptiness of not having Evyn here. There is no one to talk to about the events of the day. Even if she was here and doing the teen thing, barricaded in her room, I would be listening for her, cooking for her, telling her "No more snacks,” or reminding her to go to bed, to clean up behind herself. I would have something to do. There’s nothing to do.

Simply put:
• I’m not prepared for the job or the noise to end at 8:30.
• I don’t know what to do with myself.
• I don’t know how to relax – unless it's scheduled.
• Just sitting and watching TV or reading feels weird.
• I feel disoriented, out of place.
• I feel alone.

Is this my introduction to the “Empty Nest” or does it just take a while to change routines?

RIP Michael Jackson - My Memories

We are reminded daily of how vulnerable our kids are, but sometimes we forget that we are ALL vulnerable. We are equal as humans, in our strengths and our weaknesses, including those who seem bigger than life.

Nicky feel asleep in his therapist's arms (he has pneumonia) as I listened to the news and took a few calls from friends asking if I knew. I imagine most people from my generation were getting that same call or "tweet".

I interacted with Michael several times during my career. The first time was when Michael still lived at the family home in Encino. A friend who owned Jovan, a cologne company, asked me to set up a meeting so he could discuss sponsoring a Jackson Family tour. We all sat in the Jackson family room in simple, wood folding chairs, arranged in a circle so everyone could see each other. The entire family was there. A very quiet Michael sat and said nothing. Suddenly, he looked up and timidly asked the Chairman of Jovan, "What's toilet water?" Everyone paused. Richard answered the question. Satisfied with the short history lesson on the French and hygiene, Michael returned to his quiet pose and never spoke again for the duration of the meeting.

Soon after, Michael exploded as a solo artist with Thriller. I was one of the lucky folks who attended the Motown 25 celebration. I remember how weird it felt for me to associate the quiet young man I had met with this bigger than life performer. I knew it was an incredible night; Michael, the Moon Walk, the reunion with his brothers - but it took years for me to realize just how special the night was. I can still remember the excitement of the crowd the moment Michael struck the pose, put his glitter glove-adorned hand to his hat, pointed his shoe with those famous short pants and bright socks, and broke into dance. It was frenzy.

In the years to follow, I interacted with Michael occasionally on various music projects. When my daughter was born, he thoughtfully sent her a beautiful basket with ceramic room decorations and wonderful dolls of all kinds. To this day, they sit on her shelves. She never met Michael, and she was too young to experience the phenomenon, but she knew he was a superstar of the greatest magnitude.

It is my hope that he will be remembered not for his controversies but for his talent; and that one day we better understand how our social obsession with "famous" people exacerbates their weaknesses - which we mock - and contributes to their exile and in the end takes them from us all.

RIP MJ

Firemen, EMT's, Police...Meet My Kid

As as proud member of the neurotic parents club I have taken my son to our local fire station and police department, plopped him on a counter and said "Hey look at my kid”. Our kids are not invisible, they are in the community and we need you to be able to recognize them, so you can help them. When I see a local firemen in Starbucks, community events or the grocery store I stop and introduce Nicky. I tell them that I live in the neighborhood and this is my kid and he has ASD. I ask if they are familiar with our kids, how many of kids have ASD, or how to best help them in an emergency situation? Most often they smile, stammer and I can see them trying to find an answer that will not offend me, or show their ignorance. I then zoom in, let them off the hook for not knowing and I begin talking and most important of all I get them to interact with Nicky. I need them to see him, really see him. I need them to know that our kids are great kids, wonderful kids, bright kids, loving kids, I need them to care. I need them to care because NicPlanes Trains and Automobiles" and posted information about our kids, law enforcement and the juvenile justice system on "Juvenile Justice??? The System and our Kids". I have imagined frightening scenarios in my mind and heard disturbing stories of kids with ASD being involved in police or emergency situations with outcomes that were not so good. I think we all are justified to be concerned about what would happen if our child was in an emergency situation and the first emergency person they encountered, did not recognize autism, how would that affect the outcome. It's disturbing that so many of our first responders have not been trained or given information so they can be prepared when they come in contact with our kids. But, there is hope.
ky could get lost, he could get hurt, he could be in any emergency situation, just like any other kid. I need all of the community first responders to know how to respond to him. I need them ready to help him the same way they would help another child, even though Nicky won't respond to them like another child. I've shared my fears about Nicky airports and TSA agents on "

I got an email from Autism Speaks announcing a new tool they have created to help keep our kids safe and I'm excited to pass it along. It’s a took kit with materials you can print to keep at home, to keep with your child, to give to your local police, fire department and EMTs. I’ve already make copies and I’m taking them around to our local first responders today. I’m also going to send this link to community groups and organizations. I hope you will all check it out and pass it along. This is an easy way we can all help to keep our kiddos and loved ones safe by spreading the word in our communities. Thanks Autism Speaks for doing this work for all of us!

They have detailed information by category on the site:
• Home
• National Resources
• Fire Fighters
• Law Enforcement
• Emergency Medical Teams
• Emergency Room Staff
• Judicial System
• Search and Rescue
• Families

Here is the link and a description of the project.
http://www.autismsafetyproject.org/site/c.kuIVKgMZIxF/b.5058283/k.BE40/Home.htm

Project to Aid First Responders Online Tool Kit Provides Information and Strategies for First Responders to Promote Safe Interactions with People Who Have Autism NEW YORK, NY (June 11, 2009) – Autism Speaks, the nation's largest autism science and advocacy organization, today announced the launch of the Autism Safety Project, an online tool kit for individuals with autism, families, and first responders that provides information and strategies to promote safety in emergency situations. Created to educate and inform emergency personnel about the different challenges faced by individuals on the autism spectrum, the Autism Safety Project is available for free download at http://www.autismsafetyproject.org/. The Autism Safety Project kit is broken down into sections offering information and strategies targeted to specific categories of first responders: police, firefighters, EMS personnel, hospital emergency workers, search and rescue personnel and judicial system employees. Later this summer, the tool kit will be expanded to include information for teachers, school administrators, security personnel and emergency dispatchers. Within each section there is information about autism characteristics and strategies to facilitate safe and productive interactions. The tool kit also features materials to help families be better prepared for an emergency or crisis situation, including tools for creating an effective safety plan. In addition, there is a list of national autism information resources that includes first responder training programs and safety programs for people with disabilities. “Situations occur every day that require first responders to interact with people who have autism,” said Peter Bell, Autism Speaks executive vice president of programs and services. “The Autism Safety Project offers information and strategies to bridge the gap that is often found between people with autism and emergency personnel and increase the access and availability of information to promote safety and awareness.” “As a police officer, 9-1-1 instructor, and the parent of two children with autism, I feel particularly strongly about the need for greater autism awareness among first responders and encouraging safer interactions with individuals on the spectrum,” said Radcliffe Kenison, chair of Autism Speaks' Western New England Walk Now for Autism. “The Autism Safety Project kit offers valuable information that I hope many first responders will take the time to read and use on the job.” The tool kit is a collaborative effort with first responder organizations across the country, many of which already provide training for first responders and resources to their respective communities. The information in the Autism Safety Project was compiled by autism professionals in conjunction with first responders as well as parents. An advisory committee reviewed the project and provided further input. “The Autism Safety Project is an important tool that will benefit both individuals with autism and first responders, who are often taken aback when they encounter a person with autism in a crisis situation for the first time,” said Captain William A. Cannata, Jr., a 30-year veteranof the fire service and an officer with the Westwood, Mass., Fire Department. “We want to make first responders more familiar with some of the unique behaviors associated with autism and connect them with training programs that model positive interactions.” Captain Cannata, who served on the professional approval committee for the Autism Safety Project, is the statewide coordinator of the Autism and Law Enforcement Education Coalition (ALEC), which educates first responders across the state of Massachusetts about autism spectrum disorders and how to better understand a person who is on the spectrum. He is also the parent of a child with ASD.

Here are some great links for general information


Autism Alliance for Local Emergency Responder Training - www.AutismAlert.org
• This website includes areas for professionals to blog, a calendar of events, training sessions, news and links for both parents and professionals.
The Autism and Law Enforcement Education Coalition - www.sncarc.org/alec.htm
• The ALEC program provides training to First Responders so that they are able to recognize situations involving children and adults with Autism Spectrum Disorders (ASD).
Autism Risk and Safety Management -www.autismriskmanagement.com
• This website provides information and resources for law enforcement, first responders, parents, educators and care providers.
Autism Spectrum Disorders from A to Z -www.asdatoz.com/info.html
• This website provides links to books, resources and information about Autism Spectrum Disorders. There are also articles and speaking dates by the authors.
Caretrak Systems – www.caretrak.com
• Caretrak aims to protect children with special needs with home monitoring systems and tracking units. These are used by hundreds of parents across the country and abroad. Their devices alert parents when their child leaves a certain area and the tracking unit can find a child within a mile radius.
Community and Law Enforcement Aware Response – www.clearscv.org
• The Los Angeles Police Department (LAPD) and the Autism Society of America- Los Angeles Chapter (ASA-LA) have partnered to develop an Autism Awareness Roll Call Training Program targeted to LAPD officers. Volunteers from the Los Angeles area autism community will present key information about Autism Spectrum Disorders during roll call briefings
Disability, Abuse & Personal Rights Project –www.disability-abuse.com
• This website is dedicated to the personal rights of children and adults with disabilities, with a mission to prevent abuse of these individuals.
Inclusive Preparedness Center - www.inclusivepreparedness.org
• The Inclusive Preparedness Center works to ensure that all individuals are included in the development and implementation of plans for protection from natural and man-made emergencies.
The Law Enforcement Awareness Network –www.leanonus.org
• It is the mission of L.E.A.N. On Us to provide first responders with information and resources that will allow them to better serve individuals within their communities affected by disabilities and mental illness.
National Autism Association –www.nationalautismassociation.org/found.php
• Autism presents a unique set of safety concerns for parents. Unlocking Autism and the NAA have teamed up to provide safety information for parents and families.
National Center for Missing and Exploited Children – www.missingkids.com
• NCMEC's mission is to help prevent child abduction and sexual exploitation, help find missing children and assist victims of child abduction and sexual exploitation, their families, and the professionals who serve them.
Pacer Center – www.pacer.org
• The mission of the PACER Center (Parent Advocacy Coalition for Educational Rights) is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.
Project Lifesaver – www.projectlifesaver.org
• Project Lifesaver's primary mission is to locate and rescue missing persons. They have established many partnerships with local law enforcement to help save money and time for taxpayers. They also have many partnerships that help to strengthen the awareness and provide information about their technologies and services.
Safe and Sound – www.autism-society.org
• The Safe and Sound initiative provides much-needed information to the autism community on topics such as general safety, emergency preparedness, prevention, and risk management. Safe and Sound works to develop information and strategies that are beneficial to individuals on the spectrum, their families and the professionals who work with them. Another significant goal of Safe and Sound is to provide information and training to those who are first on the scene in an emergency situation.
Select Autism Merchandise –www.SelectAutismMerchandise.com
• This website allows for both parents and professionals to buy merchandise to help keep individuals on the spectrum safe. Additionally, this website provides a forum for people to discuss their concerns and ask for products that they might need.
Additional Readings
• Autism and Law Enforcement Education Coalitionwww.sncarc.org/images/brochurealec.pdf
• Debbaudt, D. "Avoiding Unfortunate Situations: Autism & Law Enforcement Handouts" - PDF Format: Debbaudt AUS Handout.pdf & Word Format: Debbaudt AUS Handout.doc
• Debbaudt, D. and D. Rothman. “Contact with Individuals with Autism” : FBI Law Enforcement Bulletin, April 2001 at www.findarticles.com
• Doyle, B. “And Justice for All: Unless You Have Autism: What the Legal System Needs to Know About People with Autism Spectrum Disorders"www.barbaradoyle.com
• Gerald Hasselbrink Law Offices “Autism Safety Techniques: Assessing and Approaching Individuals With Autism” Information Sheet atwww.hasselbrink.com/autsafety.html
• National Organization on Disability, "Prepare Yourself: Disaster Readiness Tips for People with Disabilities"