Month: December 2012


Dec
2012

“Living my Childhood Dream”, by Tracy Thresher

categories: Advocacy

Tracy Thresher Vote HereTracy Thresher lives and works in Vermont as an advocate for people with disabilities. He has written:

“As a child, I struggled with no reliable way to communicate. I now live out my dream of traveling to other states to educate others on movement and communication differences. Primarily, I advocate to promote the Presumption of Competence. “ (Blog Post, October 30, 2012)

This week we are pleased to share the transcript of an interview with Tracy that was recently published in Autism Around the Globe .

I am Tracy Thresher from Barre, Vermont. I now live part of my childhood dream thanks to the support of facilitated communication. Master trainer, Harvey Lavoy, has been my primo facilitator since the early 90s. Harvey, master trainer Pascal Cheng and my pal, Larry Bissonnette, and I have presented to educate others for many moons. Since the release of “Wretches & Jabberers”, Gerry Wurzburg’s documentary about our lives and work, our travel calendar has been wonderfully and fantastically full of opportunities to promote the presumption of competence. Please read
my blog  to follow along on my journey.

Below is a transcript from my interview with the NLM Family Foundation featured in a video montage created by the Foundation titled, “In Their Own Words: Living with Autism in Adulthood.” I have had mind blowing professional growth thanks to communication. Communication opens the door to opportunity.

What are your hopes and aspirations for creating the adult life you desire?

My hopes are like a beautiful tapestry which I need to find the perfect combination of support to make into my own magic carpet. My wish is to create the life I see in my head on the mountaintop of my Green Mountains. To be true to the Tracy on the inside, I need to have people in the mindset of peaceful open-mindedness.

It is my desire to be independent to the best of my ability. I communicate more slowly than I wish to in this high-paced world but my thoughts are very quick. The touch of my facilitator must be one of peaceful calm. To build my dream of becoming an educator I pushed through many barriers of built up walls of enclosing people in institutions or encasing them in the trap of no outlet for their inner thoughts. It is more harmful to my soul to be in this stubborn body than I can type. To hope is to have faith in a future that includes professional growth and not the antiquated roles of paper shredding or stocking shelves but being respected for the knowledge this life has taught me.

My priority is to own or rent my own home or place with a good supportive roommate who is willing to be open to going through intensive training to get to see how my spirit relaxes with communication. I am not the person I appear to be upon a passing glance. To get to be the man I aspire to be is a lifelong journey. It is my vision quest to find more peace in my life. I think having my own home is the next step on my ladder of communication, as it is what I must have to be free of the encumbrances of others.

What are the specific challenges that you believe you face or will face in your adult life (housing, companions who assist you, living in communities, relationships, employment, education, etc.)?

As I mentioned, my priority is housing or more difficult to find is a companion to be my assistant in the life of becoming more independent. The hardest part is envisioning what I need but being unable to find the perfect combination of nice and firm communication partner. The world moves quickly and I need open-minded people who slow down to listen to my typing.

To live in the friendly Central Vermont community is a blessing. We have educated many people in our community by joining forces in schools. We have also spoken to legislators to let them see our intelligence. Our social fabric is beautifully sprinkled with an eclectic mix of abilities. There is more to be done and my fellow self-advocates and our supporters are tirelessly trudging up the trail to higher thinking. Through my work I have met many wonderful people who enrich my life and feed my soul to the point I dreamt of as a lonely boy.

My family loved me to the max; however, life in school absolutely traumatized me. It became unbearable to be thought of as a child who could not be educated. Now I mentor students. It is my mission to inspire children and show neurotypical kids how to slow down to listen to typing. More importantly, how to be a friend is what kids need to learn. I am thinking friendship is the way to open pathways to learning. On the mountaintop of success people need to have a hand to pull each other up.

On the top of my bucket list is to continue to learn and teach. I graduated from the school of hard knocks; now I try to prevent other children from living through the pain of a life of misunderstanding. I have friends who have made me proud by pursuing higher formal education. I would say my education continues through my work on the circuit of presenting to schools and communities. My employment is one of typing to educate. Working on presentations is on my mind constantly. I write it on my brain, and then I need my facilitator to be at my side to push the words out. To come from a menial job to a professional career is my proudest moment.

What types of programs or services would enable you to achieve the adult life that you envision and/or desire?

It is my desire to, of course, be as independent as my abilities allow. I want the same for all people. The Vermont legislature is better at listening to my typing than most other states. I understand politics and the need to divide services as fairly as possible. Ideally, I would like my services to include funding that is more reflective of the housing costs necessary to put me on the path to independence. The primary obstacle in my experience though is training of facilitators.

Harvey Lavoy, Pascal Cheng, Larry Bissonnette and I work hard to cover the state of Vermont on our shoestring budget but it is tough to get to everyone we would like to. For Harvey, it is a juggling of priorities that need to be addressed. My mission in life is to have the home of peaceful independence to communicate in daily life across environments. More than anything, I want to create a world of communication for all, to have our voices heard loudly from the hills.

Tracy Thresher
Self-Advocate, Activist, and Documentary Film Star

2012

 

 


Dec
2012

Dad vs. Man by Lou Melgarejo at Lou’s Land

categories: Autism

I first “met” Lou Melgarejo when someone forwarded me a link to his YouTube video about his daughter, Bianca and their journey into the world of autism. As a parent, I struggled mightily over the years every time someone said “tell me about your daughter?”, “what is autism?”, “why is it so hard for you?”, and other basic questions. Basic questions which I never felt I could adequately answer.Lou’s video answers these – clearly, powerfully, poignantly. So now, instead of trying to answer these questions, I just send them the  “Fixing” Autism – YouTube link.

I later had the pleasure of meeting Lou in person, and began to follow his blog. Amongst the wonderful posts, is one called “Dad vs. Man”. The title is self-explanatory, but it’s a topic that’s infrequently discussed, and one I know many fathers struggle with.

We are honored that Lou has shared this. We welcome your comments, and invite you to forward this to fathers, mothers, grandparents, and anyone who loves someone with autism. Thank you Lou.

 

Father and child

Being a dad doesn’t mean you can’t be a man. When you have a child with special needs, they need their dads to be as involved as possible. Being a dad makes you a BETTER man.

Some men feel that the two are mutually exclusive. Scratch that. Some women feel that way too, so I guess it is some PEOPLE feel that being a dad means you can’t be a man.

Why do I say this? I say this because to me it is almost like there is an opinion out there that a guy has to turn in his “Man Card” in order to be fully vested in their kids. By that I mean that they take part in and are an active participant in ALL of the day to day routines of their kid’s lives that their schedule allows.

It is a disturbing phenomenon that I see firsthand almost every day. In the vast majority of events, therapies and functions that I attend, I am one of the only guys if not the only man in the room. At first I chalked it up to my unusual work schedule; my days off are in the middle of the week which allow me to be really active in Bianca’s week. But I work nights when I do work, so I am able to participate in weekend activities as well… and again, I am in the minority by a LONG shot.

So how do we get more dads involved? What is it that allows some men the ability to be fully participatory, and others stand-offish providers? I am sure Freud would have a lot to say on that subject. I wish I could tell you why it is that I look at my kids and want to do everything with them, while other guys can’t wait to get out of the house and escape. All I can do is re-assure the other men out there that being an involved dad does not make you any less of a man.

Sometime I fear that when a person is moved by one of my blogs or videos, they build up a false impression of who I am and almost emasculate me. I think that is a natural reaction but I don’t want to portray myself as something I am not. Maybe by talking a little bit about who I am as an Autism Dad, other men may feel comfortable enough to become more active in their child’s life.

So let me tell you about myself. I am fiercely family-centric. I put my family before anything, but I also make certain that I allow time for myself. I have the incredible good fortune of working in sports entertainment television. So when I go to work, I take the “Autism Dad” hat off and go into full sports geek mode. I enjoy testosterone heavy debauchery. I love going out with my guy pals and doing guy things just like any other man. I have a horrible fantasy football team with a funny, but dirty name. We were winless this year… thanks Jamaal Charles! I am so glad I decided not to keep Frank Gore this year to go with one of the few every down backs in the NFL.

I enjoy going to bars with the guys, but I don’t drink like I used to when I didn’t have responsibilities or a 45 minute drive back home from where we would hang out. I love dirty comedians and humor that walks the edge and makes me squirm. I have a thick skin and can understand the difference between a joke and an insult. I am a HUGE Howard Stern fan and have listened to probably every show in its entirety for close to 15 years.

I make time for my heathen activities, but it is in moderation. You have to have balance, but when it comes to balancing a family, the scale has to tip largely in the families favor. I do nothing without thinking of my family first. They are what is important and help to define me as a human being and keep me grounded. Also, they NEED me.

Particularly when talking about kids on the spectrum, an active father is VITAL in their development. We are talking about kids that usually have socialization problems so they need every interaction they can get at any given moment. They need help in pulling themselves out of their isolation that is ASD.

I was never a great hitter in baseball, so I have no clue what it is like to hit a homerun. I have never experienced dunking a basketball. I can only imagine that being able to do either one of those feats makes you feel like a king. You know what gives me that same kind of juice? Receiving an unsolicited hug from my daughter, Bianca signing that she wants to eat or when she REALLY wants a particular thing to eat… asking for it, my daughter using the toilet and signing the word “potty”, and on the rare occasion that I get an “I love you” out of Bianca… forget about it. That is like winning the Super Bowl.

I know having a kid with special needs is tough on a man. We have to fight a million urges every day to put things right. We put enormous amounts of pressure on ourselves to fix things that we perceive to not be right. We deal with stress in a very different way than women. We aren’t talkative by nature and when we do talk to our other guy friends; it is rarely about something as deep as the tougher moments of raising a kid with autism or the like. We usually talk about (stand by for a shocker ladies) sports, women, more sports, jokes, entertainment, and did I say women and sports? So basically our conversations are knuckle-dragging, not-so-intellectual type stuff. We rarely vent our concerns and frustrations about the real challenges that we face in life. When I do bring something up about an issue or challenge to one of my closer friends, it is usually in a less than politically correct manner. We have the kind of relationship where subtext is completely understood, so I can joke about my life with him in ways that I can with nobody else. That is a vital relationship and helps to keep me sane.

If the man is not a “fixer” he might be a “provider type”. These dads are the types of guys that feel that the solution to the problem is to just work themselves to death providing for the family. This is good for the family from an economic perspective, but I have found in my observations that it is the least rewarding or impactful in terms of bonding with your children. Kids don’t really get that “daddy is gone because he loves you”. Kids just think that all the stuff in their house was free anyway. At least that is what they think during the most important years of development. Even if you try to explain the importance of money and how it is gained and used, if you were to ask your child would he/she rather have daddy go to work or stay home and play with them, I guarantee you the vast majority of the kids are going to choose the quality time with dad.

To be fair, many dads caught in the provider role share that sentiment. The problem is that they feel trapped and are convinced that the time away from the family and earing the paycheck are for the greater good of the familial unit.

I beg to differ.

Men are not the only ones responsible for perpetuating the checked-out dad. Wives have a bit to do with it as well. Whether it is that the wife feels like there is not an open line of communication to tell the father that she would like him to be more involved, or she thinks he has too much on his plate providing for the family, or she just enjoys cashing in the checks, many moms just accept the status quo as is without complaint. I encourage women to talk to their husbands and express your concerns. It may be difficult for the guy to understand, he may be defensive but if you perceive that he is not engaged enough in your child’s life you owe it not just to the child to inform his/her father… you owe it to the father as well.

One way not to approach your man if you feel he needs to be more engaged is by comparing him to dads around you that you see as being more vested. I am aware of it happening with other couples that we have interactions with and this does not go over well. In fact, it usually results in the man distancing himself even more. Just tell him what YOU need and what you believe your child needs. Honesty is key.

I really hope that something clicks and I start to see more men at functions and taking their kids to therapy. It is going to be 2012 and I think we can get involved without it hurting our street cred. Plus it would be nice to be able to vent to another guy about how much Jamaal Charles’ torn ACL stinks in a keeper league, how funny Mike Judge was on the Stern Show, or who I would rather be stuck on a deserted island with for all of eternity, Salma Hayek or Sofia Vergara.

It isn’t Dad vs. Man… it is Dad AND Man.
To read more blogs by Lou Melgarejo go to https://lous-land.blogspot.com

 


Dec
2012

“Welcome to the Club”, from Jess Wilson at Diary of a Mom

categories: Autism, Education

“My Child was diagnosed with autism yesterday. The clinic gave me a huge packet of information. The resource specialist told me the first call I should make was to your Resource Center to figure out my coverage.”

At the Autism Insurance Resource Center, this is a typical call. And while our mission is to provide information to help families understand their insurance, sometimes what I really want to do is reach through the phone and just give them a hug. I want them to know that, even though it might have taken all their strength this morning just to get out of bed and put one foot in front of the other, there’s so much to be hopeful for, and it gets easier. Really, it does.

So after I’ve helped them navigate their insurance, I tell them that I’m a Mom who’s been there. I know what they’re going through. And I tell them that, if they have one ounce of bandwidth left, they might want to check out Diary of a Mom, by Jess Wilson.

So for our first blog of this month, I’m delighted that Jess has shared one of her many brilliant posts “Welcome to the Club”. Because in my opinion, no one says it better than she does. Thank you, Jess.

Mom-and-Daughter
photo by Kathleen Connerton

May 1, 2009

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all-encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.

With love,

Jess

To read more blogs from Jess Wilson at Diary of a Mom go to https://adiaryofamom.wordpress.com/