Like the average teen girl, Emma is boy-crazy – which both encourages and frightens her mom, because Emma is also developmentally delayed. “In a sense, you get excited because they are dating and doing a normal teenage thing,” says Debbie Elizondo, her mother. “And yet it’s scary, because they have those same hormones, those same instincts as a normal teenager, but they aren’t like every teenager.”
Emma has already broken up with a boy in her special education class in Irving ISD, and he didn’t handle it so well at first. School staff stepped in and kindly explained that Emma just wanted to be friends and that he needed to stop trying to sit with her at lunch or stick close to her in the hallways.
Aides intervened and informed parents when they observed other emerging teenage behaviors – like the time Emma and a boy ducked into a hallway to kiss.
Parents of tweens and teens know just how much drama can erupt during the tumultuous teen years, and with the added ingredient of special needs, the potential for trouble escalates. The complexities of building peer relationships, establishing independence and navigating those first dates can be tricky for anyone. But for kids with disabilities, unique challenges can leave both teens and parents feeling helpless. That’s why Thrive sought out moms who were willing to share their stories about how they threaded their way through these delicate moments.
Debbie Elizondo happens to be a special education teacher herself, and she came up with her own solution to her daughter’s teenage trials. “Emma’s House” bills itself as “a special place for special people,” and it’s a colorful, comfortable space housed in a commercial-building suite in South Irving where teens with special needs can get together, socialize, relax and participate in activities such as photography, cooking and dance classes with the supervision of trained volunteers.
Elizondo came up with the idea when her 14-year-old daughter aged out of the afterschool child-care programs available for younger kids. She knew Emma’s House would fill a gaping need for working moms like herself. “They can’t be by themselves,” Elizondo says, explaining the dilemma of teens with special needs, “and they can’t do the afterschool activities like team sports or clubs like other students can.”
Pumping in $35,000 of her own and her family’s money, Elizondo decorated Emma’s House like a comfortable home, with overstuffed leather chairs, and enlisted volunteers such as “Chef Mark,” who teaches a cooking class. Elizondo is working on obtaining 501(c)(3) status so Emma’s House can apply for grants, but they are also seeking donations of money, materials and volunteer time.
For modest tuition, teens at Emma’s House can join a book or photography club that meets one day a week or participate in arts and crafts, which are taught by community groups. To encourage healthy lifestyles, the teens join in fitness activities such as Zumba or dance classes. They relax on Fridays with movies and popcorn. Emma’s House also provides activities during the summer and on a drop-off basis ($8 an hour).
To support school assignments, the Emma’s House supervisors work with teens on homework or research projects using computers on site. More important, though, Emma’s House is a place where teens can hang out with friends, and their parents know they’ll be well cared for.
Throughout her daughter’s life, Elizondo has had to use her own intuition and initiative to come up with solutions. Like many moms of children with special needs, Elizondo sensed something was amiss well before the experts did. When Emma was 2 months old, Elizondo insisted on an evaluation by Early Childhood Intervention specialists, even though her pediatrician said it was too soon to know if anything was wrong. “At that point they just said she was developmentally delayed,” Elizondo says. “But it was very obvious that there was so much more going on.”
Emma didn’t crawl until she was 18 months old and only started walking at 3. “Those early years were filled with many doctor’s visits,” Elizondo says, “including every kind of specialist, and tons and tons of any and all kinds of therapies, from traditional to homeopathic.”
Elizondo spent those early years grappling with the emotions that accompany waiting for assessments to find out what’s really going on. She recalls the tears as she struggled with Emma’s behaviors. The final diagnosis was KBG syndrome, a rare condition that includes facial dysmorphism, skeletal anomalies and developmental delay.
“When they are children, you spend all of your time trying to figure out what is wrong and seeing if you can fix the problem,” Elizondo says. “Your days and nights are filled with Googling and searching, trying another doctor, another therapy.”
Over the years, her concerns have evolved into new worries and a new course of action. “Now that she’s a teenager, you settle in to a ‘this is who she is’ mentality,” Elizondo says. “I can’t fix this, but I want to make sure that she has a real life. It changes from new therapies and endless doctor appointments to finding fun things for her to do, places where she can be accepted and loved for who she is.
“Emma wants to have nice clothes and feel pretty like all girls do, and she’s a very confident girl.”
Elizondo leans on open, two-way communication with Emma’s teachers in Irving ISD as Emma grows into a young adult and encourages other parents to do the same. “Teachers and parents can’t be afraid to say something, no matter how uncomfortable it might be,” she says. “We often have discussions with Emma about who she can kiss and hug, because she is very affectionate. We have discussions over and over again about her body.” To build a relationship with teachers and aides, Elizondo suggests finding out what the teachers like. Even something as simple as bringing the staff Diet Cokes lets them know they’re appreciated.
While Emma enjoys school, she thrives among her peers at Emma’s House. One of her favorite times is Wednesdays, when chef Mark Darr visits. “The kids look forward to it so much,” Elizondo says. On a recent afternoon, he made smoothies with fresh fruit and a blender. “When Emma and I were leaving,” Elizondo says, “she had her smoothie in her hand. She opened the car door, looked at me, pointed at the smoothie and said, ‘I made this!’ Her eyes were glowing, she was so proud of herself.”
Waiting on a Friend
The struggle to form relationships with peers is a common thread among children with disabilities. Shari is an area mom of two children, a 16-year-old son and a 19-year-old daughter. Both have bipolar disorder, and the son has ADHD and dysgraphia. Making and keeping friends is one of the biggest challenges these teens face.
Shari tried out numerous activities for her son. Organized sports were tough, since her son had a difficult time following directions, but he did experience success in a bowling league and enjoyed playing the trumpet. Still, making connections with schoolmates seemed elusive.
Shari says it was hard to watch her son struggle in the public school, where he often acted out in anger as he wrestled with following directions or getting along with other kids. His frustration intensified during the fifth and sixth grades, when he occasionally turned over desks or became physically aggressive with students. Wanting friends but not sure how to make them, Shari’s son grew more and more depressed.
“It was very sad and can still be sad to see, because they filter things differently,” Shari says of her children. “They are not always appropriate. They were socially isolated and can still have a hard time in social situations.”
Shari concluded that her son’s school just wasn’t equipped to handle him, so she enrolled him at the St. Anthony School in Carrollton. “The first year wasn’t easy, but over time he figured it out,” Shari says, crediting the structure and routine at St. Anthony for his progress. He’s learning during school now, she adds, and while he doesn’t enjoy homework, he knows what is expected of him.
Lisa is another St. Anthony mom. As a toddler, her son was extremely hyper and easily frustrated. He was later diagnosed with Asperger’s syndrome and ADHD. Medication seemed to help a bit but definitely didn’t solve his problems, Lisa says. A sensitive boy, he longed to have friends but couldn’t figure out how to make them.
“Although one older boy befriended him, he was never sought out or invited to anything,” Lisa says. “We tried Cub Scouts, but it was practically a disaster. He just never fit in. He’d cry in the halls at school, cry himself to sleep here. He became very anxious at the thought of going to school.”
Her son had difficulty grasping the nuances of everyday language, which often left him out of conversations with tween boys. By the time he entered sixth grade, he was acutely aware of the disparity between himself and the other kids.
“He did become violent – he took a hammer to the walls,” Lisa says. “I wasn’t afraid of him, but I was scared of what his life would be if something didn’t change. He didn’t want to go to school anymore, and he became physically sick at the thought.” Though her son’s school was helpful, making modifications, they weren’t enough.
Like Shari, Lisa explored various options until she settled on St. Anthony, which she appreciates for its structure, “sameness” and calm atmosphere. “It is both therapeutic and academic at the same time,” she says. “He understands what is expected and that he is accountable for his actions every hour.”
Teachers at St. Anthony focus on specific character traits throughout the day such as empathy, and students learn the skills necessary for engaging with others during sharing time, lunch, recess and work time. One aspect of the school that Shari and Lisa appreciate is the constant communication they receive about their child’s day.
Now, Lisa’s son makes eye contact and knows to ask questions to spark or maintain a conversation. He acts very much like your average 14-year-old boy, with a few exceptions. He still doesn’t have many friends outside of school, but that’s all right; thanks to technology, he can still “hang out” with buddies through his Xbox, which allows him to play games with kids all over the Dallas area.
“I probably don’t limit the video games like other parents do, but that is how he can meet and talk with his friends in real time,” Lisa says.
Bryn, who has Down syndrome and albinism, which causes a visual impairment, seemed happy and content in her public school, mother Jan says. But all of that changed at the age of 13, even though she was surrounded by kids who treated her kindly. Bryn had no close girlfriends with whom she connected away from school.
“She wanted to be with a lot of people a lot of the time,” Jan says. “While the kids were always nice to her, she needed more friends outside of school.”
At the Green Oaks School in Arlington, Bryn found those friends. Green Oaks provides individualized academic and social instruction for children with Down syndrome and other intellectual disabilities, and many of the students become good friends outside of class, Jan says. Their parents often get together as well.
Green Oaks seeks to involve students in the community, helping them get job training at in the Fort Worth area. Bryn enjoys working at the local library, and her mom is grateful that she gets job coaching. “Bryn and her friends want to grow up and contribute something to their world, but they need a lot of thoughtful, patient help,” Jan says. “First, to break a job into all its little steps, and second, to learn how to get along with a boss and co-workers.”
Other programs create community among teens with special needs, giving them opportunities to socialize and work together in typical teen pursuits. The Miracle League offers basketball, baseball, bowling and soccer leagues for children ages 5–18, with leagues in Irving, Frisco and Arlington.
Camp Summit in Far North Dallas offers “sleep-away” camps for children and adults with a variety of disabilities, welcoming campers from all over the country. Camp Summit hosts weeklong camp sessions, weekend sessions and respite days where campers participate in a variety of traditional camp activities with the help of trained counselors.
Those years of teen drama are inescapable. As much as moms and dads want to protect their children with disabilities from hurt feelings and the yucky aspects of teen life, they know they can’t – and probably shouldn’t. It’s part of growing up. But with schools and organizations in the area that understand the social and emotional needs of teens with special needs, it is easier to navigate those difficult years.