Down Syndrome

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I’m new here!

Hi, my name is Jessica Cossin.

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #ADHD #crohn'sDisease #InterstitialCystitis #EatingDisorder #Insomnia Are some of the diagnoses I have received, most were made in my early 20's. Whenever I've had to get a new doctor, I want to collect all of my medical records, and one of those moving dollies that you use for heavy furniture; then stack all the files on it, and wheel it in with me, just for the effect. Also, to show that I've been through a lot, I won't stand for any of the bull that they may want to pull, so don't even try. I'm going to advocate for myself. I've obviously been chewed up & pooped out a few times by the medical industry. I've picked up on a few key things. 🙄 I have 4 kids, my 3rd has Down Syndrome @ 5 months she required open heart surgery. All of her hospital stays, surgeries, doctors, etc. have given me quite the experience with the medical industry as well. But, I have no idea how to get any services to help myself or my daughter, both of us are legally disabled. My husband is a truck driver, gone for 6 weeks, home for maybe 48 hrs. It's just me, no help. I'm a wreck. I've surpassed my mental point of no return . When husband comes home all he does is yell/snap at me that everything is a mess, not done the way he wanted it done, or he says, I just sleep all day. I honestly wish I could! I need to go, I've known that for awhile gg, but I can't afford any lawyers, nor to get a new place to live. The winters here are about 8 months & brutal. Heat is expensive, I am exhausted thinking about it.

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Glimmers in a Not-So-Empty Nest

HELP!!!
what?
Help me, MOM!!!
what is it?
I need your HELP!!!
I’m coming!
EMERGENCEEEE!!!
WHAT? What? What’s wrong?
My eyes.
You hurt your eyes?
No, the sun is too bright: please close my shades.

Glimmers. Everywhere I turn these days, I keep hearing and reading about glimmers: those little experiences that bring you a sense of calm and peace. Small moments that turn a plain day or even a bad one into feelings of contentment.

Charlie, my 32-year old son with Down syndrome (DS), has just bamboozled me and sent me into a panic, racing up the steep, second-floor stairs, my chronic caregiver stress hormones rising exponentially. Truthfully, the art of bamboozling should not be a glimmer.

But it is.

As my heart rate slows, and I eye his one-sided smirk silently acknowledging that he knew all along what he was doing, the comedy of my life melts all sensations of stress and anxiety. My love for him fills me. I breathe in the fact that I am so lucky to have this man in my life.

Of course that is not what most people would think. In fact, parents of newborns often hear from the medical community, their friends and family members that their baby with DS will be a lifelong burden. I heard it three decades ago. And I still see people look at me sorrowfully, nod their heads and gasp: Oh dear, your child is going to live with you for the rest of your life!

And that thought pattern needs to stop. That attitude is outdated and only does a disservice to our whole society. The reality is that anyone can be or become a burden. Especially as we age.

But here’s what not everyone can be: a glimmer.

But Charlie can.

And lucky for us living in this not-so-empty nest, he is our daily dose of glimmers. I wish you could experience them as we do every day: the comments, the questions, the hugs, the back pats, the honest gratitude and unwavering love.

Big DooDoo (aka Dad), I love you.
Mom, let’s dance.
Percy (our family golden), you are my best friend.
Where’s my little sister? I need chocolate milk.
Hey, why you got to be so old?
Where’s Will? I miss him.
Thanks for my new pjs. They’re warm!
Let’s bake cookies.
Hurry up! Why you so slow?
Big DooDoo, buy more ice cream.
Mom, one more hug goodnight. And how bout a snack?

Clearly, my empty nest is different to one without a disabled individual living in it. My husband and I are not able to be as flexible. We do struggle to find alone time, and there are additional stressors: medical appointments, logistics, basic daily caregiving. And also true, I do occasionally pine for the quietude often found in an empty nest home.

But then Charlie suddenly pops in and provides a glimmer in my life: a moment of connection, reflection, humor, sass and love, bringing me feelings of peace and gratitude. And, therefore, one cannot tell me that growing old without glimmers is a better option. I simply don’t believe it.

I would take Charlie any day. For any day of my life. For my whole life.

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Cell Phone

My daughter is 15 years old and has Down Syndrome. I purchased her an iPhone a few months ago but soon realized I was unable to place pictures of her contacts in the contact listing area. She has to select a name in the contact listing area, which then goes to the area/page with the individual's pictures and phone numbers to see if that is the person she wanted to call. If not, she has to repeat this process until the she fines the person she wanted to call. I checked with Apple, and they informed me that individual pictures cannot be added to the contact listing area- the listing that appears when you first go to your contact list. Therefore, I am writing to see what cell phone other parents have gotten for their Down syndrome children with hopes of finding a phone that would work better for my daughter. Thanks Pat

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I'm new here!

Hi, my name is ClaireHS. I'm here because I'm curious about how to best advocate for and be an ally to the Down Syndrome community.
#MightyTogether

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I'm new here!

Hi, my name is Vsettell. I'm here because I have a new granddaughter with Down syndrome. I am a nurse so I have some back ground, but I want to learn all I can to help her and her parents.

#MightyTogether

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I'm new here!

Hi, my name is bjparrish54. I'm here because my newest granddaughter has Down Syndrome. I want to learn more about this condition.

#MightyTogether

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I'm new here!

Hi, my name is Donna. I'm here because I have a daughter with Down Syndrome and I want to read everything I can about it, other’s experiences, etc.

#MightyTogether

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October is Down Syndrome awareness month

Don't let disabilities stop you. I made this for Down syndrome awareness month!#DownSyndrome