Archives for the month of: June, 2014

I embarked on this journey the day my wife and I decided to change roles and become parents. It has been quite a journey due to the unique challenges and joys I’ve experienced making me think what is really important in life.

special needs dada ASI can certainly say that in the beginning things did not turn out as expected, shockingly we were introduced to a new world.
Parenthood in general changes people’s lives, raising a child with special needs turned out to be more demanding and challenging. Our son, like many others came from Planet Spectrum and on this planet social rules and behaviors are not set by the majority rather than the individual. Verbal communication is difficult and the 5 common senses are perceived and felt different by Spectrumites, health is somewhat a vague word compromising internal physiology in various aspects from individual to individual.

I have been on this journey battering with medical, educational and social systems at times the task seems overwhelming almost impossible to achieve, however as a father I go on. I will admit there are times I feel irritated, angry and depressed, what has and continues to help me are support groups most of which I’ve created myself for the lack of them.

I do realize that unlike moms men in general are not big on supporting each other, nevertheless I haven’t given up on the Idea of a fathers Support group that is why I created the Special Dads support group, for all Fathers of special needs children’s.
We meet monthly at different venues.
The setting is very casual, it’s a great opportunity for Dads to socialize and share with other Dads their views from a man’s prospective without feeling judged.
These meetings are meant to strengthen the fathers’ role as a caregiver and to learn acceptance towards our children’s diversity by sharing our personal success and struggles for fathers who are involved in their children’s lives.
In other words it’s for “Guy Talk for Fathers of Children with Autism and Other Special Needs” it provides the necessary platform for fathers to gather information and share personal insight from other fathers in the same situations.

https://www.facebook.com/groups/NewJerseySpecialDads/

http://www.meetup.com/NewJerseyParentAdvocates/

Fathers have a lot to give to their children; some men get so depressed about dealing with the needs of a special Child that they become distant dive into their work just to escape.

I have learned that there is joy in acceptance and that although our children are different their love is unconditional and they are able to achieve greatness.

I have learned to embrace my role as a father and made it into something greater the bond I have with my son grows stronger every day, most of the activities we plan are about my son and the results are amazing, my son flourishes and continues to learn and grow in to a wonderful teenager. Over the years I’ve become a coach a mentor and a friend for my son but the most important role is being a Dad who dedicates his time for his child.

On this Journey to Planet Spectrum nothing is more precious for YOUR child than the time YOU spend together!

 

Andrea Siragusa
https://www.facebook.com/NJ.Family.Advocate

Founder of New Jersey Parent Advocates

■ I Started My Advocacy career in 2009 with a local Group there I held the position of Director of the Parent Advisory Board from Jan 2010 to Feb 2011

■ In 2010 I had the pleasure to meet another local Organization I held the position of program Coordinator including organizing meetings. Until March of 2012 I ran Monthly support meeting providing free parent support on navigating through the special education process by means of training and workshops these support meetings meant to empower parents and learn to self advocate for their children.

■ seeking to do more I decided to do something totally new. Something I could call my own.
I decided to create my own organization in the hope to foster a cooperative environment with other Advocates who are willing to help as many Parents as possible.

■ On March 18 2012 I founded New Jersey Parent Advocates

Background:

■ New Jersey parents’ Caucus, Inc. Professional Advocacy Training

■ SPAN: Span Resource Parent.

■ New Jersey Statewide Parent to Parent

Awards:

2012 Nominated by SPAN and recipient of the Parent Anonymous Parent Leadership Award

Projects I’m currently involved with:

Special Olympics New Jersey, LTP coordinator February 2014 to present

As the Local Training Program Coordinator (LTP) for Area 5 Special Olympics I run a bowling team.
“Middlesex Pin Busters”

New Jersey Special Dads2013 to present

This group is for all Fathers of special needs children’s. For fathers who are involved in their children’s lives. In other words it’s for “Guy Talk for Fathers of Children with Autism and Other Special Needs” it will provide the necessary platform for fathers to gather information and share personal insight for other fathers in the same situation.

New Jersey Parent Advocates Group March 2012 to present

Our purpose is to create strong parent advocates through training, sharing of best strategies and guidance based on successful advocacy experiences. To encourage parent advocates to build and maintaining positive, collaborative partnerships with all professionals and administrators working with and for the development of their special needs child. To guide parents in developing their NJPA voices, in positive and constructive ways, at their local school district level, their county level and our state level. To work with other organizations to make positive changes for the betterment of special needs individuals as we help them meet their personal goals as they become contributing and valued members of society. To grow this organization as a known and respected entity that works to empower parents to become successful advocates for the special needs community.

Autism Families Group 2012 to present

This support group is for special needs families to share life experience community events and experience. This is a place where you can share your child’s achievements no matter how small or how great, a place for when you need a listening ear or a shoulder to cry. In short, any information you might think it’s important and worth sharing for the greater good of all

 

 

 

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Brian R. King, LCSW, was a guest on Your Beautiful Child Radio. I welcome any and all insight he has to share…. He has a book that I own, and has so much power to share from a Dad on the autism spectrum, it’s a must have. LET’S RELATE – BOOK on AMAZON

Meltdown At The Airport By: Brian R. King, LCSW

I’m going to be very vulnerable in this post for the benefit of all who read it. Let me start by saying, “I HATE FLYING.” I realize it’s a necessary evil as I receive more requests to give presentations out of state. Between the bright lights, echoing overhead announcements and people repeatedly bumping into me at the airport, there’s the rapid pressure changes and unpredictable motion of the airplane itself. You’d think that would be enough to send me into a meltdown.

Yesterday I woke up at 4:30am to get to the airport to fly to New York for a presentation that night from 6:30-9:30pm. The landing into New York had significant turbulence and in addition to praying to God I gripped the seat in front of me so tight that I had a hard time letting go and my hands were stiff and sore.

The rest of the day went smoothly and I did an awesome presentation, met some amazing, generous people and received some of the best feedback I’ve ever gotten. I was back to my hotel and resting by 10:30pm. That’s a 15 hour day with about 1 hour of downtime in the middle.

I awoke the next morning feeling pretty worn down and very eager to get home to my family. The flight out was fine and I had a layover in Philadelphia before heading home to Chicago. I didn’t realize how overloaded and fragile I’d become from my intense schedule until the following happened.

After sitting in the airport for over two hours, 20 minutes before my flight was supposed to board, they announced the flight had been canceled because of problems with the plane and they didn’t have another plane to replace it. I quickly took out my itinerary and called Expedia whom my client had used to book the flight. The woman who answered was cold, monotone and clearly following a script. She gave me some crap about what she couldn’t do because of how the flight was booked and BLAH BLAH BLAH. She told me I had to go to the customer service desk for the airline.

By the time I located customer service the line was at least 100 people deep and not moving. It was then that someone announced that there were no available flights to Chicago and that we’d have to make overnight accommodations after booking another flight. I began shaking, my eyes began to tear up and all of the sounds in the airport became louder and the lights became brighter as I contemplated having to stand in this 100 person line for an undetermined amount of time in the hope of getting home. I was beginning to shut down which was making it hard to think and hard to speak, I couldn’t think of what to do.

So I did what I encourage every other spectrumite to do in a situation like that. I called for help. Who did I call? My wife Cathy. I explained in my very shaky voice what was happening and how much difficulty I was having even thinking. My darling wife Cathy who is a greater gift from God each day that I’m with her, remained very calm and guided me step by step in what to do.

She told me to look for one of the people that transports those with special needs around the airport. I saw one and slowly walked over because I was so shaky I felt my legs were going to give out. Cathy coached me on what to say because I was having difficult getting my thoughts together. I think I said something like, “I have Autism and they canceled my flight and said they don’t have anymore flights and I need to get home.”

The woman I asked for help is named Shawn and she gently took my bags and told me to sit down in her tramcar because she could hear the tremble in my voice and could see how badly I was shaking. She took my itinerary, asked me a few questions and said she knew someone that could help.

I sat bent forward, doing some stimming as Shawn navigated her tramcar through a sea of people as Cathy continued to talk to me and keep me calm. When we stopped Shawn asked if I needed anything and I said, No. She said she was going to talk to someone about helping me and she’d be right back. It seemed like an eternity and Cathy kept talking to me. Shawn came back with a gentleman right behind her who handed her a boarding pass with my name on it for a flight that would be leaving an hour and a half later than my original flight was supposed to.

When there were no flights to be had until tomorrow, Shawn knew I needed a solution. Shawn asked her supervisor Dale for help. He got me a seat on what I later learned was an overbooked flight. When we were seated I was surprised to discover that my seat was in the fourth row so I would be one of the first people off the plane.

I am now home sitting on my own coach as I write this to you in order to convey one simple truth to my fellow Spectrumites that you must never, ever forget. There is absolutely no value in going through your life stubbornly refusing to ask others for help. I was seconds away from a full blown meltdown at the airport so I called my wife Cathy who helped me find Shawn. Shawn led me to Dale who helped Shawn help me.

I am sitting here so grateful and humbled to my core by how generously and tenderly I was taken care of today by my soul mate and two complete strangers. Thank you doesn’t even describe it but I’ll say it. Thank You Shawn and Dale at the Philadelphia Airport, you did your employer U.S. Airways a tremendous honor by how you conducted yourselves today.

To my wife Cathy, I will continue to treat you like the gift you are until my last breath. To my fellow Spectrumites, as often as I use my own life as an example of who we can be at our strongest – I also want to use my life to demonstrate how absolutely necessary it is to have others in your life who are prepared to help you in your most vulerable moments. Needing these people isn’t a sign of weakness so get that pile of crap from between your ears right now. It is never a sign of weakness, it never was and it never will be. It is, and always will be the precious gift of service that human beings give to each other.

I am so eternally grateful to those who helped me today, and I hope my sharing this has helped you. Please share this with others. 

Brian R. King, LCSWAbout Brian R. King, LCSW

Brian R. King, LCSW (ADHD & ASD Life Coach) is a #1 Best Selling Author, 25-year cancer survivor, adult with Dyslexia, ADHD, and Asperger’s. He’s also the father of three sons on the autism spectrum. He is known worldwide for his books and highly engaging presentations that teach the power of connection and collaboration. His strategies empower others to overcome their differences so they can build powerful and lasting partnerships. His motto is: We’re all in this together.

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