Chicago mom Dana Garcia loves taking her daughter Kelsi on errands around town. “Everyone loves her,” Garcia says. “Kelsi changes the stereotypes of Down syndrome. It’s hard to describe, but there is a light that shines within her.”
As special needs parents, a lot of times our minds get stuck on the difficult parts of raising differently abled kids. We focus on doctor appointments, therapy goals and Individualized Education Plans. We worry about socialization at school. Dietary or sensory restrictions make a trip to the grocery store, if we actually find food our kids can and will eat, morph into an epic conquest.
With such busy lives, it’s easy to forget about the good things.
But here’s the catch. Like Garcia points out, and as we parents know, regardless of the disability or delay, there are good things about parenting kids with special needs.
Great things, in fact.
Sometimes we just have to force ourselves to slow down a little in order to notice.
Our child’s growth
When asked, several parents jumped at the chance to share good things about parenting their kids.
“When I see my daughter working on a computer in her kindergarten class, I realize how much she knows that I don’t see every day. It lightens my heart,” says Bonnie Goodwin, mom to 7-year-old Ella, who has Down syndrome.
“My son AJ learned to swing this week, cross the midline with his arms while juggling a ball, and do every-other foot on the stairs. We had an awesome week,” Marcie Pikelsimer gushes.
“If any of us worked as hard as my child has to get to this point in his life we would all be rock stars with multiple Ph.D.s and a few Nobel Peace Prize awards under our belts,” says RaeAnn Collins about her son Sam, who has multiple disabilities. “Our kids should be celebrated for the incredible amount of effort they put forth each day.”
It’s true. Regardless of how big or small the gain, the point is that our kids are growing. Each milestone is worthy of celebration.
Our growth as parents
Other parents point out how their children with special needs bring out the good in them.
“I’m not sure I can pinpoint a specific moment, but when Kelsi was around 2 years old and the fog had lifted from medical complications, I had a realization,” Garcia says. “I knew how much better of a person, mother, and friend I was going to be because of this little girl.”
Anne Wilson, mom to Sean who is 11 and has autism, ADHD, OCD, and is non-verbal, understands the lessons her son teaches her as well.
“Sean makes me think differently about how things work. When I have to figure out how to explain something to him, it gives me more compassion for everyone and helps me to remember not to judge others.”
Adds mom Ann Bremer, whose 10-year-old son John has Down syndrome and has survived leukemia: “Every day I’m reminded of what’s really important, and it isn’t what car I drive or what clothes I wear or how much money I have. It’s living life to the fullest regardless of limitations. It’s celebrating long-worked-for achievements.”
Are the good things about parenting kids with special needs limited to the growth of the child and parent? A resounding no, the parents say.
They point to other good things, like camaraderie and friendship found in the ‘special needs club,’ the ways our children cause others around them to grow simply by being themselves, and the encouragement, help and friendship provided by organizations, doctors, extended family, and friends who choose to walk the path of special needs along with us.
Kids with special needs change stereotypes every day.
“There is never a time that we are walking into a store, restaurant, church, school, anywhere, that her sweet ‘Hi’ doesn’t make someone smile,” says Sarah Alzamora about her 5-year-old daughter, Maria.
Not only do parents get to change and grow, but we are allowed the privilege of seeing that change and growth in people around us because of our kids.
“I love the club of parents you are inducted into when you have a child with special needs. Sometimes, you don’t even have to exchange words. It’s just the smile that can remind you that you are not in it alone. And that’s what you need when it’s been a tough morning,” says mom Michelle Aventajado.
Jennifer Doloski is thankful for the help and care her son and family receive. Her son, Joshua, is 7 and has Bruck Syndrome, a rare genetic condition that combines features of Osteogenesis Imperfecta, Arthrogryposis and severe scoliosis.
“If not for Joshua I would not know the awesomeness that is Shriners Chicago. They are an amazing staff. It feels like visiting family when we are there. They totally uplift and validate and encourage me as a parent of a child with special needs,” says Doloski.
Special needs parenting is work. It requires advocacy, patience, and a smartphone that can hold countless phone numbers. But here’s the fun stuff: It also provides opportunity for growth as individuals, families and communities, and most always, gives an overabundance of love.
“Often times, when it comes to our kids, I think we are the lucky ones,” Garcia says, smiling.