Moms reflect on raising children with special needs

By JEANETTE FRANCIS

News Review Correspondent

Motherhood is often described as one of the most rewarding and challenging endeavors a woman can undertake. In honor of Mother’s Day, the News Review interviewed mothers of children with special needs experience unique rewards and challenges in raising their children.

Danielle Corona, mother of Andres, an 8- year-old child with special needs, commented, “I love being a special-needs mom. I love the interaction my son and I have. Hearing him laugh and smile and interact with me is amazing. He may not walk, he may not say ‘mama,’ but the interaction is still beautiful.” She added that Andres is a very happy child.

Corona has learned from raising Andres that “life is so precious,” as initially she was told her son would soon die after she took him home from the hospital when he was an infant. Now he has lived for 8 years, and Corona considers him to be “very, very rare.” Andres’ primary diagnosis is still unknown. He has been diagnosed with microcephaly, cerebral palsy, polymicrogyria (softening of brain tissue), seizure disorder, epilepsy, muscle spasms and hyperpigmentation of the skin.

Corona spends a significant portion of her time and effort obtaining medical treatment for Andres. He has had “amazing doctors,” she said. “I am very blessed to have the wonderful school system and transportation in Ridgecrest.” She is working on procuring a pediatric physical therapist for PT and OT for Andres through Loma Linda hospital.

Corona discussed challenges of raising her child with special needs, saying, “People will stare. Ignorant people who think of him as being a freak. I can’t protect him from the world.”

Corona works for Kern Assistive Technology Center, a nonprofit organization providing communication devices for children with special needs. She commented, “Being in this life you see a different world.”

Kelli Sarrett and her husband, Dennis, have six children, 15, 11 and 8-year-old quadruplets. When the quads were born the Sarrett’s family and friends rallied around them to help take care of the babies. One of the quads, Hunter, has cerebral palsy. He requires a wheelchair and spends a lot of time in treatment, but manages to keep up with the busy life of his family. Most of his siblings play two sports; all participate in church, school and community activities. Kelli manages to balance these and still meet the more logistically complex needs of Hunter.

Sarrett commented regarding the best thing about being a mom in general, “We love watching our kids learn things — anything from playing sports to their accomplishments in school. Just getting to spend time with them as they grow and develop.”

She identified specific challenges of catering to the special needs in her family, saying they “are really just in the logistics.” For example, the family only has one vehicle that can accommodate the wheelchair, so they are “always trading cars. And of course if you need something you always leave it in the wrong car.

“There are day-to-day things that take time, like feeding him and giving him his treatment, but other than that I don’t think we treat him differently. As Hunter grows older, we try to find more ways of including him in things. When they were little, that transition was a little easier.”

Sarrett discussed her relationship with her son, saying, “I think as far as my connection with him, we are just more in tune. There are so many times we are in public when people say, ‘Oh! We didn’t know he talked!’ He and I talk constantly! He’s always asking me questions, or telling me things. He loves to say things that aren’t true just to see my reaction! We also love when he says something that we didn’t even know he knew. But I have had to realize that not everyone understands him like I do.”

Sarrett described a typical day in her household, saying it primarily involves “just figuring out how to get everyone’s homework done, and how to every everyone every place they need to go. And even though Hunter doesn’t play sports, he is very picky about who he wants to watch!”

Hunter has several preferred activities. “If you ask what his favorite thing to do is, he will tell you XBOX. What he really likes is watching the kids play. And even though everyone has a special connection with him, he has a special bond with Tucker [8] and Blake [15]. We are not at home a lot — seems like we are always outside or in a gym, watching a game.”

Sarrett has two cousins who require the use of wheelchairs, and said she believes her history of exposure to children with special needs may have prepared her in some respects for raising Hunter. “Maybe I kind of knew what to expect.” She reported a shift in perspective she learned in the process of raising Hunter. “One thing I’ve learned as a mother is how important it is to teach other children about kids who are different. There are a lot of people who maybe don’t understand, who don’t realize that he’s not really that different from the rest of us.”

Despite her busy household, Sarrett considers that she has time to recharge. “To me, our time with the kids is my ‘relaxing’ time. Like this weekend, we had games all weekend, but we got to watch the kids, we were spending time with the people we like to hang out with, talking to friends. It was a lot of fun. I guess I don’t ever feel like I’m missing anything.”

Diane Ruggiero is the mother of Gio, age 7, who has been diagnosed with PDD and autism spectrum disorder. She described her son as “an extraordinary little man. He is the first child. To me this is what being a parent is like for everybody.”

Ruggiero has faced unique challenges in raising Gio. “When he didn’t have language that was really difficult because the communication wasn’t there. There were days where we had no idea what he wanted because he had no language. One day he wanted water at bedtime and it took us 20 minutes to figure it out.”

Gio also has a limited diet of foods he will eat. He has aversions to foods with specific textures that developed at age 2 and follows a gluten free diet.

Ruggiero commented that despite the challenges of raising Gio, in some ways raising him “is easier than raising my typical child. He is really consistent.” For example, her daughter will bargain regarding the bedtime ritual, whereas Gio will follow the steps of the nightly routine without comment. “The challenging part is saying we are going to do something in 5 minutes and it actually takes 7 minutes, and he can get really upset.” If she can distract him with something else his response improves.

Ruggiero has benefited from community support through her participation in a parent support group where she “met other parents going through the same situation who understood what we were going through.” Now she participates in the Ridgecrest Autism Awareness program, where she has met other parents with whom she has “really connected.”

“Most people assume about anyone who is on the autism spectrum that they don’t connect with people and prefer to be isolated. That’s not true. Gio does not think it is necessary to say ‘I love you’ but he shows it.”

Gio has a best friend who is a special needs child. “When they first met they had no need for each other. Now they ask for each other all the time and want to play and get together. It is exciting to watch him have friendships that blossom. They parallel play. Then they come together and it works. They comfort each other.

“Gio is amazing with babies. He has this connection that is incredible. He can calm babies down. He is creating that connection on his own. He doesn’t want them to be upset. He wants them to be happy.

“Gio has come so far and he impresses. He is smart and he has this memory. You’ve never been put in your place until you are corrected by a child. He is usually right.

“Watching him making progress over the years and to watch how much he has grown as a person is unreal. You watch your typical children grow and milestones are right on schedule. With Gio you never know what you’re going to get. He has his own timing. Once he has figured out how to do it he is on to the next thing. Seeing him blossom is a lot of fun.”

Story First Published: 2014-05-07