In this episode Jason, Mark and Rick each give an update on their child and the current challenges they are facing for their age category.
Dexter, the walking man!
Jason’s Dexter is two years old and is now walking. What a big milestone walking is! Go Dexter! Jason has been having trouble finding the right preschool for Dexter. Unfortunately they have had trouble with schools refusing Dexter based on his disability. Is that even legal? The worst one was the school that his older child attends. That school turned Dex down without even evaluating him. It seems that Jason and Colette have found a home for Dex now and it is working out, but it did bring them a lot of stress. So I guess Jason’s big challenges are now related to school, but walking was a big milestone that happens in the 2-3 yr range for our kiddos. Aren’t they cute when they just learn and they stumble around like drunks? I love that age.
Luke and the nerds
The Owens Family is working on academics. What nerds we are! Luke seems to love letters and we have been pushing reading and writing with the Learning Program, Handwriting Without Tears, TV Teacher, magnetic letters, foam letters in the bath and the iPad. He seems to be sucking it up. In fact he just pointed out a typo for me while I was writing this. We have been facing some school issues. Our county wants to place him in Kindergarten this year even though he barely makes the age cutoff. We want to hold him back. We want him to REALLY be ready when he hits kindergarten where we plan to push for full inclusion! Negotiation with school officials I think will be our big challenge going forward.
Kayla and her court
Kayla turned seven years old recently. Happy birthday, Kayla! Kayla herself was unavailable for comment but Rick says their ‘current challenges’ revolve around school as well. Rick’s big thing is communication. It is important to respond quickly when things aren’t working. If you put things off and say things like ‘we should just give it another month’, you can quickly miss a whole school year in an sub-optimal environment. Rick says to keep pushing and go after the things you need. We also talked about inclusion and what Kayla’s day was like. Making friends and fitting in is also a challenge.
That’s our episode. Sorry for the hiatus. We had two postponements in a row. One by a guest and one that is all Mark’s fault. However we have some really great guests coming up so stay tuned!
We are the Down Right Awesome Dads and thanks again for listening!
~Mark~
Download Down Syndrome Radio, Episode #20. Better yet…subscribe, rate us and leave a comment on iTunes!
‘They lost; we won’ We all tell our kids, “I’ll be right back.” After 9/11, some children didn’t believe that. Victoria Alonso’s mother, Janet, went to work at the World Trade Center that morning and never returned. Her dad was left to care for a 2-year-old daughter and a baby boy with Down syndrome.
“If I was to tell you I did this by myself, I’d be a liar; I’d be a flat-out liar,” Robert said. “I got my mom, my aunt, my pop to help.”
But he never returned to work at the pizza place he owned in Stony Point, New York. His family substituted for him. “I owe it to my children to be around,” Robert explained. “If I buried my grief in work, my kids would lose both their parents.”
He no longer put off anything that brought them joy. “If we’re lying on the floor and all of a sudden Victoria says, ‘Daddy, I want to go to the park,’ I’m like, ‘Oh, I don’t want to go to the park.’ That’s what I’m thinking, but I say, ‘Let’s go. We’re going to the park.’ ”
Robert shouted “Hang on, guys!” as the kids squealed with laughter. They were riding in a grocery cart, careening across the lot toward dad’s big SUV. “Why should I deprive my children from going shopping?” Robert said. “I see all the other mothers going shopping with their kids. Why can’t I do it?”
He raced alongside the grocery cart, jumped on its rear axle and pushed with a powerful leg. The children exploded with laughter again. “When my kids smile, the terrorists lose,” Robert said with a grin. “The people who killed Janet wanted to destroy our happy lives. They lost. We won.”
Since 9/11 Robert has taught his children to treat every moment like an unopened gift. “I don’t want to be the rain cloud in my family,” he said. “I want to give my kids the incentive to do things and go forward.”
He coached Victoria's softball team to the New York State championship the year she turned 12. “We all went out and bought rounds of Lipitor,” Robert chuckled.
And toasted his son Robby, too. The 10-year-old learned to walk and read before most kids with Down syndrome because his dad played with him every day.
Robert waited a long time for his family. He and Janet tried to conceive a child for 10 years, then gave up. Two months later, she was pregnant. They considered it a victory, so they named their daughter Victoria.
These days, when Victoria looks in the mirror, she sees her mother. “She was special to me,” Victoria said, even though she can barely remember her mom. “I love her.” She paused. Her eyes welled with tears. “People need to know that.”
The two are much alike. Victoria is an honor student; Janet studied nights and weekends for years and graduated from college in her late 30s. She worked as an email manager on the 97th floor of the World Trade Center. On the day of the attacks, she had just gone back to her job at Marsh & McLennan after staying home to take care of her second baby, Robby.
Janet’s body was found seven months after 9/11, on her son’s first birthday. “God works in funny ways,” Robert sighed. “Hearing the knock on the door and the news that Janet’s body had been recovered from Ground Zero, that was the most difficult. It really knocked me out. It was like September 11 all over again.”
I visited the Alonsos on the first Mother’s Day after 9/11. Robert scooped up his kids and carried them out on the deck in back. “Come on,” he said, “let’s say hello to mommy in the stars.” It was his 13th wedding anniversary.
As Victoria neared her 13th birthday, I asked her, “If your mom were sitting here today, what would you ask her?"
Victoria stared across her backyard in thought, then turned to me. “I’d ask her, ‘What would she want to do with me today?’ ”
Good times keep bad memories at bay. The Alonsos spent that 9/11 in the park, near a memorial that their neighbors built to Janet and all the other parents from their New York City suburb who went to work that day but never came home.
Robby wandered to a wall filled with names as his father and sister played catch nearby. “Right here,” he said, pointing to Janet Alonso’s name etched in marble. “This was my mommy.”
The little boy leaned over and scraped his fingers back and forth across his mother’s name. His father watched, then rubbed his own hands together, as if he could scour away painful thoughts.
Robby drew his fingers to his mouth, kissed them and gently pressed them on his mother’s name. “Mama,” he whispered.
We all think about 9/11 once a year. The Alonsos live it every day.
When my friend, Mark – fellow Down Right Awesome dad and a podcast veteran – noted the lack of regular podcasts about DS and suggested that we just do our own, I jumped at the chance….well, I was a little hesitant at first, but with a bit of arm twisting, Down Syndrome Radio was born!
We are doing the DSR podcast to share our stories about parenting children with Down syndrome – from a dad’s perspective. We are definitely not experts, but hope that we can help other parents going through similar experiences.
At this point, we have recorded four episodes and plan to continue to try to record about once per week, shooting for about an hour per episode. We would love to incorporate guests as we progress and the topic allows (less work for us!). We have a pretty good grasp of the format for the show, but we will continue to experiment as we go forward. Please, feel free to leave comments or send us email – let us know what works or doesn’t, tell us your story, ask us questions….anything! Enjoy!
The email began with a teaser. "Good story," it read.
It continued: "Vernon Meyer... has Down Syndrome daughter Corinne... she will probably not marry or be independent ... She is a senior at Sergeant Bluff-Luton High School ..." So he did what most people probably wouldn't do. He rented a tux and they got her a dress he took his daughter to prom.
"I think being around all those teenagers probably not the most comfortable moment for a dad ... but he did it for her ... what a great example in fatherhood ... he may not be a war hero or a big-shot executive ... but he is a hero to his daughter ... and a good example to ... men ... to be fathers."
The message led me to Sergeant Bluff on Thursday. I found Vernon and Aileen Meyer sitting at the kitchen table with their oldest child, 18-year-old Corinne, still all smiles, reliving her big night Saturday, her senior prom.
"Dance," she said. "Dress," she said, pointing at the pictures.
"A friend of Corinne's went last year to prom and we thought, 'Wouldn't it be neat for Corinne to experience prom in her senior year?'" Aileen asked.
Aileen and a couple of her friends took Corinne to find a dress recently. I failed to understand the depth of this mother-daughter rite.
"We might not get that whole wedding dress experience that a mother and daughter often share," Aileen said. "So this was kind of our big hurrah for Corinne. And, yes, I suppose, for me as a mom. I'm so grateful I had friends with us who could share in the experience."
Vernon, meantime, headed to Jos. A. Bank Clothiers Inc. for a black suit and bow tie.
Corinne awoke at 6:30 a.m. each day last week. She'd pop into her parents' bedroom, asking, "Dance? Dance?"
"Not yet," they'd reply. "The dance is coming, but not until Saturday."
The SB-L High School prom played out a few hours after Corinne ran two races in a Special Olympics meet at Sioux Center, Iowa. She placed second in the 50-meter dash, fifth in the 100-meter dash.
The family then "sprinted" home to shower and dress to the nines, as the expression goes. They soon found their place in line waiting for the announcer to introduce this "couple" in the grand march.
"I was more nervous for this than I was for my own senior prom 25 years ago," said Vernon, a 1987 graduate of Lytton, Iowa, High School.
The crowd cheered. Vernon and Corinne stopped several times for pictures while passing sections of the bleachers.
"Corinne is a ham," Vernon explained, saying his daughter wasn't at all nervous about the experience. "Her personality doesn't lend itself to being nervous."
Following the grand march and its related paparazzi, dozens of SB-L High School prom-goers gathered around Corinne to congratulate her on her beautiful dress and inspiring walk with Dad.
"That's all you want as a parent," Vernon said. "You want for any of your kids to be accepted and loved."
While that could have ended the experience on a high, Vernon gave his daughter more. They headed with the group to the Marina Inn across the river in South Sioux City where they dined and danced with the rest of SB-L's prom contingent.
It marked Corinne's first school dance.
They danced for nearly three hours until Corinne's eyes grew heavy. Dad knew the time had come to take his prom princess home.
"This was really just a chance for Corinne to experience her prom," Vernon Meyer said. "I focused on her reaction and I could see it meant a lot to her."
With graduation and an extended learning program coming to help Corinne transition from high school, Vernon Meyer grew reflective.
Studying his daughter's prom photos and the corsage, he said, "I'm so glad we did this. Those moments are valuable and limited."
