Browsing Tag

special needs

Guest Posts, parenting, Special Needs

Touch Down

January 13, 2017
down

By Angela Dawson

Larry was making the most of his freedom.

After three hours cooped up and airborne, he relished the opportunity to stand on his own two tottering feet. My husband queued at the hire car counter; Larry wandered wherever he fancied. We took turns, his siblings and I, being his shadow. We held a hand, or let him roam free, always one step behind.

As I scurried after him, I caught sight of John and his mother. We’d met on the plane earlier. Inveterate travellers, they’d spent seven weeks in Australia at the start of the year. They’d feared the marathon flight—he gets terrible pain in his back if he sits too long—but being chair-crammed for twenty-four hours troubled him none.

Each year, they visit The White Isle to spend time with the mother’s cousin who, decades before, came for a spell, fell in love and married a native Ibicencan. After his death several years ago, a Brazilian captured her heart. The cousin and the Brazilian used to run a farm, but now cherish the space and the slowed down pace. It sounded idyllic. Continue Reading…

Autism, Guest Posts, Special Needs

The Seventeenth Ring

October 6, 2016
autism

By Jayne Schroeder

His small hands, the only notice of what was to come; tiny fists clenched tight and shaking from the sudden storm of rage brewing inside. The yelling, incoherent screams of anger. His hands, now unclenched, his index finger waving wildly, signifying blame to an unknown source an arm’s length away. I wonder just how bad it will get this time. How long will it last and how will it end? I complete a quick scan of the room looking for possible items in his path I fear cannot be replaced. I catch sight of his iPad and my laptop, and I send a silent plea to the Universe. I make a mental note of the blue cup of water on the coffee table, but that’s the last thing I’m thinking about. It’s just water.

My third child was born with an extra twenty-first chromosome on Earth Day, seventeen years ago. It’s not lost on me that his love for every animal and human on this planet is given equally and unconditionally. There is an innocence so breathtakingly beautiful with the living out loud approach he takes in life. He is not self-conscious; the polar opposite of most typically developing teenagers, what you see is what you get. Contrary to the most popular of pre-conceived notions regarding Down syndrome, he is not happy all the time. He is human. Just like you, his emotions run the full spectrum. He does not think twice about letting you know what he is feeling in any particular moment. It can be both beautiful and painful to watch. Continue Reading…

Binders, Guest Posts, parenting

Consumed

July 16, 2015

By Liane Kupferberg Carter

I am at a fish restaurant in the theater district the first time it happens. My sister in law Susan and I have tickets for the matinee performance of “Love, Loss and What I Wore.”  I have just ordered the filet of sole, when suddenly the room gets too bright, the clatter of glassware too loud. A swell of nausea washes over me. My heart pounds; my throat constricts. I can’t breathe. Is it the smell of seafood? A panic attack?

I flee to the ladies’ room. Eventually the sick feelings subside.

But several days later it happens again. Nausea.  Racing heart. Tightness. I go see the cardiologist.

“Everything checks out okay,” she says. “I don’t think it’s your heart. You should see the gastroenterologist.”

I dread the idea of someone threading a camera down my throat. But the nausea quickly becomes unrelenting. I feel systemically sick. After I wake nauseated one night, teeth chattering, I schedule the endoscopy. When I wake up from the anesthesia, the doctor tells me, “The good news is that you don’t have an ulcer. You have some reflux. We’ll have the biopsy back in a week. We’ll start you on a proton pump inhibitor, but if you don’t feel better, come back and we’ll explore further.”

The futuristic-sounding proton pump inhibitor, it turns out, is a fancy name for a Nexium- type medication.  I am hopeful. And for a few weeks I do feel better.  Then the nausea and constriction come back.  The doctor calls it non-specific gastritis. Is he suggesting this is all in my head?  Anxiety gnaws at me. I start to dread eating. I find myself cancelling social appointments, because they all revolve around meals. I am consumed with feeling ill. I think about the many meanings of that word consumed.  Swallowed.  Spent. Drained.  Depleted.   Devoured.  Destroyed.  I wake in the night with a suffocating sense of my own mortality, thinking, I can’t be sick.  Mothers of special needs children have to live forever.

I return to the doctor. He palpates my stomach and weighs me.  I have lost 12 pounds. “I think the medication isn’t helping as much because you have a hybrid form of gastric reflux and irritable bowel,” he says. “Are you under stress?”

I tell him that my younger son, Mickey, has autism and epilepsy.  He nods sympathetically. “Okay, let’s just get an abdominal ultrasound to rule some things out.” Continue Reading…

Guest Posts, motherhood, parenting, Special Needs

Down Is Up: On Parenting a Child With Special Needs.

November 6, 2014

beauty-hunting-jen-logo-blackBy Anna Yarrow.

My daughter stands in the middle of a shallow pond, yelling, “If you love me, come and get me! Do you want me? Do you care?” I rest in a patch of shade, watching hordes of children and chaperones traipsing over a wooden bridge; an epileptic girl who fainted at the old schoolhouse, her face weary, limbs floppy in the aftermath; hearing-impaired students in red t-shirts, marching single file, absorbing this living-history museum with their turbo eyes, fingers dancing shadow puppets between them.

“Fine then Mom! I guess I’ll have to stay here . . . Forever! . . . Way past midnight!”

The tremor in her voice tells me there’s sand itching in her socks. Cicadas buzz in the cottonwood trees, volume cranked to unbearable. A canker sore stings her gums. Lunch uneaten. All factors tipping us towards melt-down. A teacher calls, “Time to go, kids!” I wave at the 2nd grade class as they jostle back to the bus. A boy asks, “Why does she get to stay in the water?”

I drove my daughter separately, in case she got wet and muddy, or needed to leave the field trip early. Water usually calms her, but today she’s rocking, hands in tight fists, moaning, “You have to come get me . . . “

I peel off my boots, roll up my jeans, and approach her, soothing, “It’s okay . . . I do want you . . . Please, let’s go.” She grabs my waist and holds tight, pretending she can’t walk. Words like ‘manipulation’ and ‘discipline’ flash across my mind (residue from my spare-the-rod-spoil-the-child upbringing). I’m triggered by her anxious questions: what is love what is want what is care?

She’s silent when I say, “I love you.” (But at least she doesn’t reply, “I don’t love you!” like years past.)

I escort her through heat and blowing dust, and “I’m tired!” towards the parking lot. She asks, “Can we can stop at the library on our way home?” I agree, and remind myself to breathe.

Reality feels slippery after a tantrum. Memories of previous episodes conglomerate in my ribcage, taunting: out-of-control! I judge the day’s events while driving. Pond, yelling, and desperation. Mother frazzled and inept. I give my daughter a carton of almond milk, and fumble the radio, finding her favorite country music station.

Yellow lines blur around a sharp bend. Oncoming vehicle red or orange spooks me and I swerve my Jeep off the road. Slow motion skid on dirt, hello sagebrush, windshield shattering. We’re crashing, tipping, rolling. My arm reaches out to protect her, and I promise, “WE ARE OKAY. WE ARE NOT HURT.”

And she believes me.

Hanging upside-down like bats. My legs pretzel the steering wheel. Engine sounds wrong, so I turn the key. Undo her seatbelt. She falls to the ceiling, surrounded by nuggets of turquoise glass. I say: “We had an accident, but we’re safe!“ She glows with surprise and says, “That felt like zero gravity!” I wonder why I don’t feel sorry. Why we’re not crying. Why all of this feels right somehow.

Continue Reading…

Guest Posts, parenting, Special Needs

Before You Judge Me.

October 8, 2014

beauty-hunting-jen-logo-black

By Rachel Pastiloff.

When you are out in the world, be it at a restaurant, grocery shopping, driving in traffic, or at the doctor’s office, and you see a child screaming and a mother losing her cool and grabbing that child by the arm and being stern: BE CAREFUL BEFORE YOU JUDGE THEM.

Be careful placing judgment upon others, for you know not what battles they are fighting.

Before you judge me, or anyone. Take a breath. Consider what you might not know. Look inward. Look outward. Whatever it is, realize this: you may never have any idea of someone else’s story, so judging them is a tricky business.

Continue Reading…

Delight, Guest Posts, I Have Done Love, Inspiration

What Happens When Justin Timberlake & 25,000 Fans Sing Happy Birthday To a Boy With Autism?

August 14, 2014

Hey there! Jen Pastiloff here, I’m the founder of The Manifest-Station. Marika, the author of this piece, won a spot at my Manifestation Retreat in Ojai last summer based on her writing! It is such an honor to publish her here again. I am excited to announce that Good Morning America just contacted me after they saw this story on my site! And People Magazine And MTV and The Today Show and my goodness, it keeps on coming…It was an honor when I was on Good Morning America and was able to raise awareness for Prader Willi Syndrome (which my nephew Blaise has, as well as autism.) I am thrilled to see what this will all do for autism awareness. Go Julian! Thanks to Justin Timberlake for being such a star! A class act! If you are using this article please make sure you credit/link The Manifest-Station.

Continue Reading…

Guest Posts, parenting

The One Everyone Should Read: On Navigating Parenthood.

December 10, 2013

beauty-hunting-jen-logo-blackBy Rachel Pastiloff

I am constantly navigating through a crazy maze of trials in my life. Always trying to figure out if what is now is what it’s supposed to be. I constantly examine this concept with my children and myself.

Last Tuesday was an especially difficult day. I struggled through the day, and my kids weren’t even home from school yet. Once my littles arrived home, things went from hard to climbing Mt. Everest hard. Blaise, my sweet boy who has Prader Willi Syndrome and Autism, was in a state of destruction. As dinner approached, I asked my sweet angel where his glasses where. Very nonchalantly, he responded that they were broken. The two of us found our way into his bedroom where he showed me both pairs of his glasses broken, twisted and shattered in little pieces. I found myself cracking into those same little pieces.

I lost my patience and started yelling. I hate that part of me that comes out when I crack.

I screamed at him, “Why, Why, Why?”

He never answered. He didn’t understand what I was asking him. This led to the real issue. The glasses aren’t the issue; they are at the surface; they are like the skin; they are just the part you see. The real issue was exploding inside.

Why can’t my son understand me? Why can’t my son be “normal?” Why doesn’t my son’s brain work?

There it is: the guts of it all. It’s the insides coming out, the organs and the blood.

Seven years of dealing with special circumstances doesn’t make it easier. Seven years doesn’t make those bitter moments sting less. Seven years doesn’t close the wounds. I have spent the last few years stuffing down my feelings and pretending that all is cohesive. That it’s tough but working.

In reality, it was all still there under the surface, inside a pressure cooker about to explode.

I found myself crying after my kids went to sleep that night. I cried for myself. I cried for the stress that his syndrome can create in me, but mostly, I cried for him. I cried for what I thought was missing. I was quiet after I let it all out; I was quiet all through the days that followed. Something had opened up, and I finally had to face it and deal.

I had to accept what is.

Blaise accepts his life. It’s time I remember how to live more like him. Blaise doesn’t see failure or lack of in his life. He accepts things and does so with a smile.

I am working on accepting “the what is” now. I added into my a-ha moment that I can accept what is now and trust that things may look different in the future.

I have to let go of what I think it is “supposed” to look like in my life and in my kids’ lives.

As the parent of a special needs child, I tend to be on a roller coaster of emotions. Going through the struggles with my child. Walking the path of his life right by his side. It can be a daunting task. One thing I don’t need to add to my plate is judgment to what I think the picture of my child’s life should be.

I happily bought the little one a new pair of glasses. Hopefully this experience will have us both see a little clearer.

 

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Rachel Pastiloff is a native of Philadelphia/South Jersey. After years of living on the West Coast, she transplanted to Atlanta, Georgia from Berkeley, Ca in 2006. Rachel is a mother with 2 young boys, ages 5 and 7 years old.. In 2009 Rachel’s oldest was diagnosed with a rare genetic disorder called Prader Willi Syndrome. The following year her son was diagnosed again with Autism. Both of these events would help shift the direction of Rachel’s life. She began her path with health and wellness to create a better life for her family. It then became her passion. Rachel became a certified yoga teacher in 2012 and is a graduate of The Institute for Integrative Nutrition as a Health and Wellness Coach. A life long lover of food and cooking, Rachel helps her clients get back in the kitchen and enjoy it. She is helping people have a new relationship with not only food, but also their personal health and wellness. Her work can be seen here on the site and on Positively Positive. Reach her at rachyrachp@gmail.com to work with her or visit her site. 

Guest Posts, Inspiration

Compassion. Guest Post by Rachel P.

November 11, 2011

The following is a guest post by this girl named Rachel Pastiloff. Oh yea, she happens to be my sister. She is the mom of the little boy who prompted me to start GAMEYoga.org: Gifts And Miracles Everyday. Free Yoga For Kids With Special Needs.

COMPASSION

(by Rachel Pastiloff)

I have had the concept of compassionon my mind a lot lately and how important I believe it is to have it.We live in a crazy world. For so many of us these times are tough times. I know people right now who have lost their home, lost their jobs, have a child who is dying, have a marriage that is failing, are diagnosed with breast cancer. The list goes on, sadly. My God, it can be overwhelming.

I think to myself everyday:I must have compassion, I must have empathy.
Why do I do this? I do this because all of these people deserve it. I believe everybody deserves compassion. I do it sometimes even for those that we think are unworthy. Again, some of you may ask why?
Here is the nitty gritty of it all. I want others to have compassion for me and compassion for my son.If you want to see change, then you have to be the change!

I was recently told a story by a friend of mine about his little brother who has Aspergers’ Syndrome. Everyday when his little brother goes to school the kids say to him, “What’s up Forrest Gump,” “Hey Forrest Gump,” and then the other slurs begin. I cried when I heard this.

How could this be in 2011 that our children could have such little empathy and compassion for each other?
THEY LEARNED IT AT HOME.
We have got to start teaching our children young about how to feel for others, how to care for others, and how to really see people for who they are and not what they “can” and “cannot do”.
As the mother of a child who has special needs, I am continually baffled by the lack of compassion in the world. Often times, it is those who are closest to us who have the least amount of empathy for our situations. As the parent of a child with special needs I spend everyday just trying to get through the day. Let me repeat myself. I spend everyday just trying to get through the day.
It is tough when you have a child with special needs or any medical condition.Okay, so where am I going with all of this…what the true purpose of this entry, on my sister’s blog is…

What can you do?

Yes, you.Compassion and empathy can make such a difference in the life of a person with special needs or the parent of a child with special needs. When you are out at the store and you see a mom struggling, and you see the child in the midst of a crisis, PLEASE DON’T JUDGE! What you can do is: reach out.

HAVE COMPASSION.
Instead of mumbling to yourself, “Oh that kid is such a brat” why not walk by and just smile at the mother? Do you know how much it would me to her? Just smile at her, and without even saying anything, let her know that it is okay, that she is okay.I was recently at the airport with Blaise. We were waiting to board the plane and he was beginning his meltdown. He was really struggling and I was so tired and just exhausted from running to the gate to make the plane. I just couldn’t bring him out of the meltdown. Then all of a sudden an older couple in front of me turned to look at me. The woman must have read Blaise’s name on his backpack and so she started talking to him. Low and behold he stopped being upset. We started to board the plane and she turned again and smiled at me. I smiled back and thought to myself, “Thank you, thank you sweet stranger, thank you for reaching out!”

Such a small little gesture went such a long way.


How many of you out there have a friend with a child with special needs, or have a family member with special needs? I bet a ton of you answered yes. If you answered yes, then please think about doing this.

  • Reach out to your friends or family, send them a message just to say hello. 
  • Don’t get mad at them if they can’t come to all of your parities or get togethers, sometimes it is just too hard. 
  • If they seem to disappear sometimes it is not personal, life can be rather tricky for them. 

I only ask this of you, always have empathy, always remember that every family looks different. Please don’t judge your friends or family or strangers on how you think they are raising their kids.

PLEASE ALWAYS REMEMBER THIS ONE LAST THING (I said it earlier)

As the parent of a child with special needs we are just trying to get through the day!

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My sister Rachel is an amazing person, Dear Manifesters. Please share this post and support us at GAMEyoga.org even if it is just by smiling at someone who may seem a but different. 
I have made t-shirts and all money is going to Prader Willi research and well as Tay Sachs research. Please order shirts by emailing Jennifer@JenniferPastiloff.com and specify size. Also, if you are not a fan already, become one of the ” I am a Fan of Somebody with Prader Willi Fanpage” on Facebook here.
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