Archives for posts with tag: Inspiration

Fantastic Traits of a Strong Special Needs Dad

“I will take her for a walk, Mich.”   

Those are the words John said during an especially tough Thanksgiving dinner about 9 years ago.  Michael was still a baby, it was his first Thanksgiving actually.  He was NEVER a fussy little guy, but on that day he was.  I think due in part to a change in his schedule, but whatever the cause, he was not a happy little man.  Elizabeth was struggling to sit and eat at the table.  She did not like the food, and what I brought for her did not work either.  She was not talking very clearly that day or using more that a couple of words per sentence, so it was hard to figure out exactly what was wrong.  So between the usually happy baby who was not, and our beautiful Elizabeth in the throes of some serious sensory issues, I was about a minute away from joining Michael in crying….then came John’s words.

And he did, on a brisk November day (Ohio weather), he did.

While he was gone, we were able to get Michael to stop crying.

When they returned, calm had returned

To the house.

To the table.

To me.

My Support and My love had helped me so very much that day.

The day kind of sticks out in my memory as a big one. We all know holiday gatherings can be stressful for the best of us, let alone what it can do to the normal rhythms and routines of those with special needs.

That day was an example, but there have been  an infinite amount of other times, when John read the situation and knew how to help support me, as we helped Elizabeth.
Our teamwork was pretty clear from the start.

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John loved being a Dad from the start. I was happier than anything to be home with our children.  I loved every minute but was so happy when John came home.  He would be tired from work, but fresh for the kids.  He immediately lit up to see us, and he started playing.  Chasing, hugging, laughing, loving and “being there” That was and still is how he works.

Being the Dad of a child with special needs is not easy, at least from my point of view. There is a huge learning curve, in my opinion. Learning how to have that certain spark of life – a connection, with those with special needs.

I think it was really hard on John.  He would come home, reach out to hug Emily and Elizabeth, and only Emily could hug him. Or he would home on the weekend and he wanted to play with “his girls” and Elizabeth would hide behind a chair because it was too much for her.  

In the early years with Elizabeth, there was not a guarantee as to what John would be walking into at the end of the day.  There was no guarantee that I would not be beside myself by the time John came home, or that Elizabeth would not be in the middle of a meltdown.   

Then there were  all the hours we spent talking about Elizabeth and her days, her therapies, her successes.

And all the hours he talked to me about me.  About how I was handling things.  

And the hours we had talked when our opinions differed greatly about the next step for Elizabeth.  Like  why I was sure that this therapy would be a good one, or why I just knew she needed to go to this camp.  

And all the hours of hugs and support he gave as I would cry because this was the time I was sure she would talk and she didn’t.   

John was and is all those things to this day.

But for Elizabeth

-He was the one to offer her calm.  I pushed her each day, John allowed her to be.

-He offered her a quiet space.  I took her to busy therapies and schools, John took her to the swings.

-John made her laugh.  I loved he made her forget her tears that day.’

– He saw the fun child and enjoyed her.

-And he loved her, each and everyday. Elizabeth knew it then and she knows it now.

If anybody were to ask me what I felt was the biggest gift from a special needs Dad, I would have to say the last one.  

We all need to feel love and acceptance.  It is just human nature.  But to give that gift to a child who is working so hard for the simplest things is precious and priceless.

So to those Dads who get up and hug their children, know the gift you are giving              

And for those who hug their child, who cannot hug them back, know the gift you are giving is received and treasured even more.

 

As Down Syndrome Awareness Month draws to a close, we wanted to highlight a few people born with Down Syndrome who are changing the conversation about how we think about this genetic condition. Extraordinary people like professional model Madeline Stuart and MMA fighter Garrett Holeve urge everyone to revisit how we define beauty and strength.

Madeline Stuart - Special Needs Essentials

Madeline Stuart: The New Beautiful Face in Fashion

Globally-recognized model Madeline Stuart turned heads and made headlines when she strutted down the runway during New York Fashion Week last month. Hosted by fashion brand FTL Moda, Stuart wore fitted, feminine haute couture and finished the show to a standing ovation. Earlier this year, actor Jamie Brewer from the hit tv series American Horror Story became the first person with Down Syndrome to model in a fashion show.

“This is about creating inclusions, stopping discrimination and breaking down those walls of confinement,” said Stuart via Facebook. “Modeling is just the vehicle that is letting us do it. We want everyone to be loved. After all, that is all that truly matters.”

Madeline has documented her NYFW journey via social media. Since her debut as a model a year ago, Madeline has amassed nearly 80,000 Instagram followers, more than 3,300 Twitter fans and 471,911 Facebook followers. In a series of candid photos and tweets, the inspirational model shared the moments that helped shape the future of the fashion industry.

Damian Graybelle, the president of EverMaya, released this statement when the lifestyle brand announced that Madeline had been named as their new spokesmodel. “Let me be clear here – Madeline Stuart is not a ‘beautiful young woman with Down Syndrome.’ Rather, she is beautiful – full stop.”

Garrett Holeve - Special Needs Essentials

Garrett Holeve: Fierce Fighter For Equality

Professional MMA fighter Garrett Holeve is breaking down preconceived notions of people with Down Syndrome in a literal way. Holeve, known professionally as G Money, is fierce both in and out of the hexagonal cage. He has trained as a MMA fighter for five years and wants a chance to compete. As it turns out, Holeve’s biggest battle hasn’t been in the ring. It’s with the people who want to prevent him from participating in professionally-sanctioned fights.

Last August, minutes before the opening bell, the boxing commission ordered the cancellation of a bout between Holeve and David Steffan, a Special Olympian with cerebral palsy. Armed with the full support of National Down Syndrome Society, Holeve has partitioned the Florida authorities for his right to compete in MMA.

“Garret has the same rights as the rest of us. It doesn’t matter that he has Down Syndrome. If he’s a fighter, then he’s a fighter,” said Mark Priceman from the National Down Syndrome Society.

While he waits for the verdict, Holeve is connecting to his beloved sport in other ways. Recently, he founded Garrett’s Fight Foundation which advocates for competitive opportunities for adaptive athletes.

Garrett’s Fight Foundation strives to turn disabilities into abilities by making the necessary modifications to training and finding ways to conquer one’s limitations. The foundation promotes the integration of individuals with various disabilities into athletics by providing individualized coaching and adaptive training. 

October is Down Syndrome Awareness Month, a chance to spread awareness. During the month of October, we celebrate people with Down syndrome and make people aware of their tremendous abilities and accomplishments.

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