Taking your first steps.
Saying your first word.
Attending your first day of school.
All these ‘firsts’ are monumental steps in a child’s life.
Spanish teacher Tina Martinat realized each of these accomplishments is a miracle with her youngest son Joe.
“With the other four [children], I took for granted that they were going to reach all of their developmental milestones,” she said. “Kids do that. The four did it. Not that they reached them at the same time, but they all did it. With Joe, that didn’t happen. It took extra effort on all of our parts. It took us educating ourselves as to what could we do to help Joe reach those milestones.”
Martinat is the mother of Joe, a 14-year-old boy with Down syndrome.
Prior to Joe’s birth, there were no complications, but he was diagnosed with Down syndrome and leukemia at birth, and focal seizures a few months later.
“We didn’t know anything, but that was also a personal choice,” Martinat said. “Now they have so much pre-natal testing, but for me and my faith, it wouldn’t have changed anything except make me worry very much.”
Down syndrome caused Joe to have other health issues, but Martinat said she stayed positive by looking at all the things he didn’t have.
“It didn’t cause the leukemia, but that is one aspect of it that only one percent of kids with Down syndrome are born with, and Joe was the unlucky one that got it,” she said. “Thank goodness for the great doctors at Children’s Mercy, because he was followed with a hematologist-oncologist for six years, and was declared free of any other problems. At that point, he said there was no greater risk of Joe developing that than any other kids his age and that was all I needed to hear. A lot of kids with Down syndrome, about 65 percent of them, are born with heart defects. Joe had a good, strong heart. About 35 percent of them have blockage in their intestines that they have to go in and do surgery for –– Joe didn’t have that.”
Though his cognitive delays and communication problems make it hard for Joe to have typical pastimes, he finds joy in music.
“Music is his life,” Martinat said. “He has no boundaries of the types of music that he enjoys –– everything from country to rock. If you put anything to music, Joe’s there.”
Martinat said Joe learned how to turn on music by himself just by watching others do it. She said Joe also enjoys dangling his feet in their pool and swinging –– even during winter because they moved the swing-set into their basement.
Martinat said Joe enjoys the little things in life and spending time with others. She said Joe will sit in between his brothers while they play video games because he likes the action happening.
“He just loves the enthusiasm and excitement that goes on within the group,” she said. “I look at it as such a very simple thing in life, and he feeds off of that. He feeds more off of what we all take for granted, and that’s just being together with friends and family.”
Martinat said Joe has taught her more than she will ever teach him and that she can’t imagine life without him.
“When Joe was born, I pretty much thought I had it all figured out, and I was totally wrong,” she said. “I teach him life skills and how to do in life and how to be productive, but what he’s taught me is intangible. He’s taught me patience, compassion and absolute, undeniable acceptance of others –– and that’s not something that I can go and buy at Walmart. It’s not something that anybody is going to physically hand to you, but just by his very being here and on a daily-basis he teaches me something, even if it’s just ‘Mom, be a little bit more patient with me.’”
Joe currently attends Prairie Star as an eighth grader, where he has a para with him at all times. Some of the activities he does at school include recycling and helping arrange chairs in the cafeteria. Every day after school, a bus drops Joe off at BV, which allows Martinat to stay and help students.
“The district has really helped me out a lot, because when he was in elementary school, Joe got out a little later then I did, so I would leave here at 3:30 and go pick him up and that was perfect,” she said. “Now in middle school and high school we’re both let out at the same time. It enables me to stay here longer to help kids, to have BIONIC meetings and to finish up here as a high school teacher.”
Next year, Joe will attend BV Southwest. Martinat said it’s always a big step when he transitions to a new school but believes Southwest will be the perfect fit for him.
“The Blue Valley kids are loving, welcoming, protective and accepting,” she said. “I think it will be a big step because he’ll be in high school per say, but since I have visited Southwest, I have seen the teachers and the awesome facility that they have. With Joe you always worry if he’s going to do OK, but Joe will adjust really well.”
Martinat said the challenges of balancing work and taking care of Joe are huge, but that her family, teachers, occupational therapists and the Internet have helped her out a lot.
“I try to do my job here at 110 percent, but then I also realize I have a child who needs me,” she said. “But, I have a very supportive family, and my husband is absolutely tremendous because he gets him ready in the morning, he takes him to school.”
By teaching her to be more patient and positive, Martinat said Joe has made her a better teacher.
“He has helped me to realize that those thirty-plus kids that sit in front of me on a daily basis might not get to conjugating ‘-AR’ verbs at the same time as their elbow partner, but they’re going to get there,” she said. “I might have to work a little harder with each one, but they’re going to get there.”
Martinat said Joe always maintains a happy personality, rarely cries and isn’t a negative person.
“Joe is always in a good mood,” she said. “Sometime’s he’s a little bit crankier than others, but that always has to do with other factors, like if he’s tired or hungry. He’s just a very happy-go-lucky child who loves life to the fullest.”
Joe has one sister and three brothers. When he was born, Martinat’s oldest child was 10 and the youngest was 3.
“They really viewed Joe as just a baby,” she said. “He had medical issues that we were dealing with, of course with the leukemia and the seizures, but they didn’t see Joe as any different. They know now that they need to help him more when they can, but he’s just a kid, he’s just their brother –– they wrestle, they play video games, they hang out, they take him out to McDonalds, they take him to Taco Bell.”
People living with Down syndrome are known to have special relationships with animals. Martinat said when Joe was born they had a dog, but it had eventually passed away. A few years ago, social studies teacher Andrew Unrein sent out an email to the faculty asking if anyone wanted to have his dog Riley, and Martinat decided to take the offer for Joe.
“[Riley] and Joe are the best of friends,” she said. “She puts up with so much irritation from him, like he’ll kind of pull her hair. I’ll say ‘Joe, be nice,’ and he’ll lay his head down by her. Riley sometimes needs some energy let-out, so she’ll start running around the house –– Joe loves it. She just runs back and forth and he’s clapping and it is so awesome to see their connection together. Our little Riley is wonderful. Thank goodness Mr. Unrein gave her to us.”
Martinat said her hopes for Joe’s future are to take care of him with her husband as long as they can or as long as he wants them to.
“If Joe wants to go and live in a group home setting with a buddy or with friends, then we’re all about that,” she said. “We really do hope that we’ll be able to take care of him, but we realize there’s going to come a point where we might not be able to. Johnson County has a plethora of programs for kids like Joe after he graduates from high school. We do hope that Joe can be as productive as he can be –– only time will tell.”
Martinat said she wants teenagers to know that kids with special needs are just like everyone else and that they have feelings, too.
“Most of them are very, very aware of other kids and how they treat them,” she said. “Sometimes I look at my little Joe, and think he’s luckier than most. You know why? He doesn’t know hate. He doesn’t know hurt. He doesn’t know hurtful words. He will never produce them, and he doesn’t know when somebody is being hurtful. There are so many kids with special needs that know when someone is being hurtful towards them, so I want kids to know that they’re people, too.”
She said Joe isn’t a Down syndrome boy –– he’s a boy who happens to have Down syndrome.
Although Down syndrome is a genetic disorder that’s a random error in cell division, Martinat said she still thinks Joe was put into her life for a purpose –– to share Joe’s story and why he’s here. Martinat does this every year on freshman Class Day at the beginning of the year.
“I realized after the first time, and this is thousands of kids ago, I knew that I couldn’t stop [telling his story],” she said. “I get kind of emotional, but it’s like, if we don’t realize this opportunity in life to touch another’s life, then what are you here for? I know I can teach Spanish, but I’m also teaching love and compassion. I’m teaching life lessons that are not in our textbook.”
Martinat keeps all the notes from students thanking her for telling Joe’s life story.
“I’ve told my husband, at my funeral, put them out,” she said. “That will tell my life story. I go back and maybe on a day that’s been kind of rough, I read it and I go, ‘Yup, that’s why I go back to school everyday.’ That’s what Joe does for me, too. I may have had a rough day, but when they drop this little boy off every day at my doorstep, no matter how bumpy my day was, he rights my world. He puts everything in perspective –– no matter how cranky I might be, he makes everything right.”