Special Needs Parenting: Ellen Seidman Loves That Max
Meet Ellen Seidman: New Yorker, freelance magazine editor for publications such as Allure and American Baby, former deputy editor of Glamour.com. She is a wife and mother of two: Max, age 8, and Sabrina, age 6.
Max has cerebral palsy, caused by a massive, bilateral stroke at birth, which was in turn caused by a lack of oxygen. On the spectrum of diagnoses under "cerebral palsy" (yes, there is a spectrum), Max has a relatively mild version, meaning he can walk, he can talk somewhat, he drools sometimes, has some cognitive delays, and some fine motor skill delays. He has been in therapy of some kind since he was one month old. Max himself is a typical 8-year-old: he loves to play with trucks and going fast, he's fascinated by potty humor, and his favorite color is purple.
In her "spare" time, Ellen blogs about Max at LoveThatMax.com. Started in 2008 when Max was about five, its mission is to acquaint people with Max and to remove negative language about and insensitive treatment of kids with disabilities. For her, the social media space is "amazing." When she started, its purpose for her was to inspire and engage others. While it has done that, it has also been very cathartic for her. She was in a "much better place" than when he was born.
Indeed, when she and her husband Dave were first told of Max's stroke and expected problems, she grieved for the loss of the "normal" child she had assumed she'd have. She aggressively sought answers and progress through intense therapy for Max. Eventually she realized that she couldn't keep turning to doctors because they didn't have all the answers. And she began appreciating the pure "yummy-ness" of her new baby. Over time and after much soul-searching, she became better able to appreciate what progress Max did make, his "inchstones" rather than his "milestones," and stopped comparing him to other children.
Ultimately, parenthood for her has been "the joy and the terror of uncharted territory, thrills, sweetness, and fun -- a love you never could have imagined." While her experience may not be the same as the mother of a "typical" child, her feelings about parenthood are at their heart, the same. Parenthood is indeed an adventure, unique to every child and parent, and for which no manual or map has been provided. It can be both heart-wrenching and heart-warming. It can be terrifying, exhausting, and amazing, all in the same day.
And so, to other moms who would like to get to know, or have their children get to know, a child with special needs, she offers this advice:
- don't stare
- treat him or her like any other kid, asking what he or she likes, engaging on his or her level, etc.
- encourage your children to play with him or her. Teach them that children with special needs may require them to slow things down a bit or make some alterations in their play, but that they are still just kids at heart like your own.
- if your kids ask questions of you about a child with disabilities they've seen, don't be uncomfortable in answering them.