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Advocates For Children of New York: School Info and Education Assistance for NYC Families

February 24, 2013 Leave a comment

Click here to see my review of Advocates for Children, the latest entry in my series of posts on Mommy Poppins about resources/agencies for special needs children.

Small Child, Big Fears (and more from childmind.org)

September 4, 2012 Leave a comment

THIS WEEK ON CHILDMIND.ORG
September 4, 2012

If you’ve lived with, and loved, a very anxious child you’ll recognize the kind of moments Michaela Searfoorce writes about this week: Watching her son James stand, stranded, on the beach while all the other (younger) kids are splashing joyfully in the waves. Girding for a meltdown when a balloon man materializes at a favorite restaurant. Prepping the Oscar-caliber performance it takes to coax him into the pediatrician’s office. Michaela writes about living for 12 years with James’s severe phobias—in some ways more challenging, she notes, than a myriad of cognitive and physical deficits and medical issues.

For an otherwise adventurous family, it means a mental list of things you don’t do and places you don’t visit to avoid causing James misery. But it also means an evolving set of strategies to help him overcome his fears. Michaela shares her tactics (some she’s proud of, some she’s not) on childmind.org. And she shares the great pleasure she takes in each of the things James no longer fears, something all of us who’ve been there can enjoy too.

With most high schools opening their doors this week, learning specialist Ruth Lee, the Child Mind Institute’s Director of Clinical Outreach, offers a checklist for students to get organized and off to a good start in managing their homework and assignments. Not surprisingly, she advocates use of a planner. But what did surprise me is that she suggests that kids block out time in their planners for things they like to do, as well as things they have to do. The reason? Because kids who find homework arduous often feel that it will take forever, using up all the time they have for things that are fun. By marking out blocks next to each other, kids can remind themselves that working efficiently, rather than avoiding the work, will leave guilt-free time to do whatever they enjoy.

—Caroline Miller, Editorial Director

Change.org Petition: Hospital to my autistic son – No heart for you

August 17, 2012 4 comments

Thanks, Jhanin, for sharing this with me.

Change.org
My son will die without a heart transplant, but the hospital says he can’t have one — because he’s autistic.
Sign My Petition

My son, Paul, will die without a heart transplant. But the Hospital of the University of Pennsylvania refuses to put him on the transplant list — because he’s autistic.

Paul is only 23, and he’s amazing. He was diagnosed with a deadly heart condition four years ago, but he battles through it with a smile. He’s smart and creative — we just self-published a story he wrote, and he’s working on a sequel. He loves his nephews. And the whole family loves him.

I don’t know how to tell my son that his doctors refuse to give him the operation that could save his life.

I promised Paul that I would fight for him with every breath, no matter what it takes. But I’m afraid my voice alone isn’t enough. I started a petition on Change.org asking the Hospital of the University of Pennsylvania to put my son on the transplant list — will you sign?

Paul’s doctor says one of the reasons he doesn’t qualify for a transplant is that he can’t name all the medications he’s on. This is ridiculous, because Paul takes 19 medications. My son has faced discrimination because of his autism all his life, but this time, that discrimination could kill him.

I was devastated when I found out the hospital wouldn’t help Paul — it was the worst moment any mother could imagine. But then I read about another mom who got her mentally disabled daughter on the list for a life-saving kidney transplant after more than 50,000 people signed her petition on Change.org. That’s what inspired me to start my petition for Paul. I know that if enough people sign my petition, the hospital will give my son a chance to survive.

Please sign my petition asking the Hospital of the University of Pennsylvania to put my son, Paul, on the list for a heart transplant that could save his life.

Thank you,

Karen Corby

Tribute To Special Needs Dads (Guest Post)

June 16, 2012 Leave a comment

I feel fortunate to share another incredible guest post with you this Father’s Day weekend. Thank you, Monica, for sharing your thoughtful and beautiful essay with us. Make sure to check out her site, http://www.butterflywheel.com for  more where this came from.

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Tribute To Special Needs Dads

by Monica J. Foster

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It’s hard to really understand what the father of a child with a disability, or “special needs child” goes through unless we have been in their shoes. These dads, like my own, are there with their children giving a gift that no one else can give. They give comfort and reassurance that no matter what, everything will be okay. Sometimes dads pretend to be strong when deep down inside, they are uncertain or even terrified. They are the unsung heroes to special needs children. They are special needs fathers and dads.

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Any male can become a parent. It takes a real man to be a father.  And it takes a man, I think, of extraordinary stock to be a father to a special needs child. We deserve extraordinary after all, don’t we? When a child is sick, typically it is Mom who handles the care unless the mom decides to work while the father stays at home, or works from home.

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Special needs moms are very special, but in the world of a child with a disability, Daddy is equally vital. Fathers tend to provide a calming and logical presence, to help bring some clarity to the fuzziness in the world, and help calm and reassure a child in a way no one else can.

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In families with multiple children where one child is hospitalized or in need of regular care, usually it is dad who stays home with the other kids while mom is at the hospital with the sick child, unless there’s a relative to sit with the kids while they both go. Dad is the one holding down the fort, keeping the other kids safe and happy, and bringing the siblings to visit the sick brother or sister. Dad’s role is very often overlooked because he is so quiet and often working behind the scenes. In my dad’s case, he was a grade parent bringing cupcakes to school, taking me to school or on field trips around his Coast Guard base schedule, helping me get ready for school, while my mother worked and went to school to finish her degree. Other times, they worked as a team day and night investing in the best opportunities for my development inside and out. It made sense when my dad ended his career in the Coast Guard due to kidney disease and wasn’t totally ill quite yet, to be the house dad. And he did well, right by me. To my mother’s half dismay, I’m sure, I grew up to be a Daddy’s girl, still loving her very much, but bonded close to Daddy. I learned her head strong ways and some of his level-headedness. I learned to freak out first often, but after getting it out of the way, taking a problem apart one piece at a time to solve it.

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In single parent situations, dads still play a critical role. From providing Mom with time off through visitation, to dads who are the full-time single parents, there are many great single fathers to special needs children who are priceless. I know a few of them myself and would stand by their fathering of their children with challenges through thick and thin. There are also amazing men who step up to the plate and assume the role of step parent to a special needs child. Not all men would want to take on such a role because it does require a lot of work and can be daunting. There are also men who choose to intentionally adopt special needs children. All dedicated, special needs fathers are amazing.

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Special needs mothers are the ones who tend to discuss their children ad nauseum with pride, advocate fiercely and rally support around their children’s needs, while the fathers are generally more reserved but still intensely interested, watchful, and emotionally invested in the care of their children. While I’m sure Daddy had an overprotective streak, he was more likely to display a, “You ok? Well, get up and throw some dirt on it!” concern once he figured nothing was broken. He was the mild-mannered semi-’Good Cop’ when my mother was raking ‘experts’ over the coals for making daft assumptions about my challenges and abilities — often mixing up the two. Still, he knew how to pound a fist on the right desk at the right moment when it was needed.

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Behind every special needs child, there is a team who has helped that child thrive: the doctors, many therapists, caring nurses, dedicated teachers, extended family, mothers — and our fathers, dads, daddies, pops, etc. On this Father’s Day, special needs fathers deserve extra praise and gratitude, a pat on the back or hug. But, if not on this Father’s Day, honor them every day for all they do, give and say. To every special needs father out there, the often unsung hero in a child’s life, thank you for loving your child with a disability as they are and rallying their best as a result of your protection, nurturing, encouragement and protection. Thanks for being there for us, and for giving us the love and support we need to blossom.

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And thanks to the special needs grandpas out there, too, like my mom’s dad, Grandpa Tom — who, using his old N.C. mountain-raised ways, reminded me to stay ever strong inside, live with integrity, be my own person and never let the world stop me from being who I am. Love you both for being men among men who taught me there are men out there, also like my husband, who will love you for you – all of you, no matter what about your body doesn’t work or doesn’t exactly look like everyone else’s. Thanks for making me feel more myself and helping me to reach for more out of life.

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Monica J. Foster, CC CVBC CPSS RM is known as The Life Beyond Limits Coach® and Inclusionista. A vibrant amputee on wheels and the daughter of a disabled veteran and retired public school teacher, Monica believes in living life beyond limits and that every single person has abilities and value to contribute to enhance humanity. Clients include people with disabilities (yes veterans too), moms of children with children with special needs and overwhelmed disability service providers. Monica is a certified in life, life purpose, career and vision board coaching at BUTTERFLYWHEEL® Motivation, Advocacy & Consulting (www.butterflywheel.com). Using coaching, vision board creation, and holistic energy support, she shows clients how to transform limitations and limiting beliefs into possibilities so they can lead more powerful lives. Monica is also a nationally sought-after inspirational speaker, diversity awareness trainer, writer and disability grant consultant passionate about social and community inclusion, healthy relationship support, anti-bullying initiatives and accessibility for all. She lives in North Carolina with her husband, Bryan and their rambunctious cat, Annabelle.

Poems And Essays For Special Needs Dads

June 13, 2012 1 comment

As many of you have noted this month, there isn’t exactly a plethora of stories, poems or reflective words about special needs fathers out there. Since Father’s Day is fast approaching, I figured that now is as good a time as any to post what I’ve found so far.

1. God Sent To Me An Angel, by Paul Dammon

2. My Daddy, My Hero by Cheryl Veenstra

3. To Whom It May Concern, by William W. Joslin

4. The Silent, Constant Scream, by Pat Linkhorn

5. Song For Bobbie, by Marv Borgman

Stopping To Smell The Roses – A Story About James and Grandpa

June 10, 2012 Leave a comment

Growing up my dad used to tell us long, elaborate, wildly fantastical stories – at bedtime, on one of our many camping trips or basically anytime the mood struck him. I’m grateful to have inherited some of my dad’s story-telling genes and am equally happy to share another one of his tales with you (this time 100% true), about him and James.

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Stopping To Smell The Roses

by Michael Gerrity

The Roman philosopher Seneca once said that a good memory is the best gift that you can give yourself and James has provided more than a precious few.  One day sticks out in particular – I get a chuckle every time it comes to mind.

About four years ago when Michaela and Ryan were moving to Manhattan, I had James at my hotel in Times Square.  I was in town on business and they were looking for apartments.  I decided to take James to Toys R Us.  At that point in his life he was most definitely not interested in the giant indoor ferris wheel so we ended up buying a basketball to take outside.  I was wondering where we could toss it around when James came up with a great idea.  If I would just stand on the corner of 51st and Broadway and make my arms into a hoop he could use me as a net.  So for about 30 minutes James shot baskets using my face as a backboard.  Even being in NYC we attracted a bit of attention, but we were creating a great memory and having a fantastic time.

After I was exhausted and dirty enough, I convinced James we should retire to our hotel.  James agreed after finding out the hotel had Sponge Bob Square Pants on their TVs (apparently not something found on TV at home).  We entered the lobby elevator – my room was on the 17th floor.  As we entered we were followed by one of the hotel security staff – a big burly looking fellow and a tall young woman dressed in a chic black gown and carrying a dozen red roses.   We said hello. Neither of them responded.  Before we hit the fourth floor James had asked twice if he could smell the lady’s roses.  She and the security man continued to stare at the elevator door without flinching, as if engrossed in some Escher drawing or a Broadway Play.  It was bit uncomfortable as James continued to request a sniff, and as we approached the 8th floor they both kept staring straight ahead.

At this point I just wanted the ride to be over (desperately).  Then James turned and looked up at me and said in a quiet, but crystal clear voice, “Grandpa I really wish I could smell those roses.”  Now the silence from our elevator companions was nearly unbearable.  Just when I thought I could take no more of their ignorance of James, the cool lady broke, bent down and said “Would you like to smell the roses?”  It was all James wanted and he took one long sniff of sniffs.  I could not help but notice the smile on the woman’s face as she watched James’s grateful reaction.  From the corner of my eye I caught the big burly security man staring straight ahead and grinning from ear to ear.

Embarrassing? Sure. But it was also a most memorable and beautiful moment – especially to see how his quiet, innocent persistence brought some joy and smiles to others, despite themselves.  Thanks James for helping us all “stop and smell the roses.”

Top Ten: Things My Autistic Kids Wished You Knew (Guest Post)

June 5, 2012 Leave a comment

I’m especially glad to have a guest post for tonight’s Top Ten – I’ve spent so much time reading this dad’s blog that I didn’t really get to my own today. People often ask me how I find the time to keep a blog and I’ll be the first to admit that my life is a whirlwind, but for the first time I found myself actually wanting to know, how does this guy find the time?  The words that immediately come to mind while reading his stories are “strong, candid, heartfelt and inspirational,” though they just don’t seem to do justice to Rob Gorski.

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About the author: 

My name is Rob and I am the creator and author of the “Lost and Tired” blog and founder of Android4Autism. I’m also the 33 year old father of 3 boys on the Autism Spectrum. Gavin is 11, Elliott is 5 and Emmett John is 3. My amazing wife Lizze and I have been together for 10 years, married for the past 8. I was a Firefighter and Paramedic for many years until I was needed at home 24/7 after Lizze became ill. Things are very difficult and everyday seems to be more difficult than the last, however, we always somehow manage to survive. We aren’t a TV show and there are no actors. This is our struggle, our journey…and it’s all true. I am “Lost and Tired” and this is “My Reality #Autism.”

For more about this amazing family, go to http://lostandtired.com/about-rob-gorski/.

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Top Ten: Things My Autistic Kids Wished You Knew (Guest Post)

Written by Rob Gorski (Lost and Tired) and dedicated to his amazingly beautiful children. 

1. I’m sorry I have fits but I’m not a spoiled brat. I’m just so much younger on the inside than I am on the outside.

2. I’m easily overwhelmed because I see and hear everything. I hear the lights hum and clock tick. Everything is so loud it makes my head hurt all the time and my eyes hurt from all the bright lights.

3. I’m not stupid, I’m actually very smart. I just don’t learn the way you want me to. Please learn about Autism so you know how to help me better understand what you are trying to teach.

4. Please don’t be mad at mommy and daddy because we don’t come over for holidays or birthdays. They really want to go but I don’t do well at another person’s house. It’s too overwhelming for me and they know that. They don’t go because they love me, NOT because they don’t like you.

5. Please have patience with me. I try really hard to make good decisions but I can be very impulsive at times.

6. Yes, I have Autism but that doesn’t mean I’m less of a person because of it. If anything, I’m actually more of a person in spite of it.

7. My house might be messy sometimes. It’s because my mommy and daddy spend all their time trying to find new ways to help me or teach my brother to talk.

8. Just because I can’t talk doesn’t mean I don’t understand what you are saying. My feelings can be hurt just like yours.

9. I wish my mommy and daddy knew how much I love them. I have a really hard time with emotions and I don’t always like to be touched. But I love them more than anything in the world, even more then my Lego’s.

10. I know I can be frustrating but don’t tell me I won’t amount to anything because I have Autism. If you love and support me I WILL do great things in my life in spite of my challenges.

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Other Must Read Posts:

Go to http://lostandtired.com/must-read-posts/ for a list of Rob’s most popular posts (including a couple that he wrote for CNN), though from what I see there are plenty of others worth reading. I was immensely touched by the raw emotion and candor expressed in Confessions Of A Special Needs Dad and can 100% commiserate with the need to just vent sometimes, without it being taken in any other way than purging feelings of frustration, helplessness and exhaustion. Some other favorite entries (so far) are The Age Gap and My Broken Heart.

Special needs moms google symptoms, write into message boards, trade stories and express their feelings openly to other mothers about their situations. I am ever so grateful to Rob for providing this important outlet and voice for special needs fathers, and have a feeling you will be hearing a lot more from him in the future.

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