A special connection: Parenting for special needs can be a roller coaster
Editor’s note: Suburban Parent editors are proud to introduce a new column that will be written for parents of children with special needs. Column author Sherry Manschot leads a parent network of special needs families in her job at an area special recreation association. She will answer questions, dispel myths and provide expert information to families whose children have special needs. Please welcome her to these pages and feel free to send in your questions.
From the moment you hear the news, you begin to wonder. Will it be a precious little girl or a bouncing baby boy? Will she be a ballerina or president? Is he going to play baseball or the piano?
And then you begin to dream. You dream about how life will change. Oh the joys this new bundle will bring into your life, so small yet so imposing. You dream about that first smile, seeing them take their first steps, teaching them to ride a bike, how you are going to handle that first romantic heartbreak, and walking them down the aisle at their wedding to that special someone you hope will love them as much as you do.
Yes, you have it all planned out. And then #133; life changes.
For some it is those first words that the doctor shares, it is a quiet birth, or a feeling as you watch your child and notice something is not quite right. Somewhere deep down, you know there is something different about your child.
Mary Morrow of Carol Stream knew instinctively. This, her third pregnancy, had been typical. Her doctor had said the baby was going to be small. She herself was petite so she wasn#146;t worried. But at 36 weeks, during an ultrasound, the technician#146;s face was the first clue. The doctor told her that her baby#146;s chest was likely too small for the lungs to fully inflate. Morrow, herself a nurse, knew this was no longer typical.
Nancy Stolarz of Wheaton found people asking about her son. He didn#146;t seem to talk as much as other 2-year-olds. But Stolarz had also been quiet and shy as a child. Ryne did talk, just not around people he didn#146;t know. After all, don#146;t all children develop at their own pace? A year later, Stolarz learned about preschool screenings held by the school district. She thought it might be a good idea to get him screened. It turned out to be an excellent idea.
As a parent, especially a first-time parent, we can#146;t help but compare our child to others at similar ages, especially for milestones like sitting up, crawling, walking, etc.
There are signs. Some signs are subtle and some are like a flashing neon light.
Once you see the signs of having a child with special needs, you begin to wrestle with those dreams and your life plan for you, your child, and your family. We know things are going to change but this is definitely a change for which we are not prepared. What happens now? What am I supposed to do? How am I going to handle this?
As I listen to parents relate their personal journeys, I can#146;t help but think that parenthood is like a roller coaster. Twists and turns, highs and lows, sometimes traveling at an unbelievable rate and other times clicking along just waiting and anticipating what comes next.
But what also emerges most clearly is the depth of emotions that run the course. The intense love for their special child is ever apparent. The patience, tolerance and understanding that come with raising a child with special needs can only be superseded by the sense of humor required each and every day.
Your focus becomes one of education, learning about the diagnosis. Knowledge is indeed power and can empower you for what is to come. So you take your child for screenings, you check with the doctors and specialists, you search out resources for information and services, you connect with other special needs families. You ask questions and keep on learning.
Your strength is in knowing that as a parent your child is depending on you.
That means taking care of yourself from the very beginning too. Every parent I have spoken to attests to going through an overwhelming mourning period. It is completely natural to grieve for those dreams that have changed or the milestones that may not be reached in typical fashion.
Grace Morrow, now 14 years old, should be moving into her teen years thinking about high school, boys and getting a driver#146;s license. But because she was deprived of oxygen from a lack of chest and lung development in utero, her brain functions and developmental delays will not allow any of those teenage milestones. Mary Morrow still mourns what is not to come, but loves each new milestone Grace reaches.
Ryne Stolarz, now 21 years old and living with an Autism Spectrum Disorder, has graduated high school, is active in several sports, and has an active social life. Nancy Stolarz knows that his ASD will always be a constant part of his life. She also knows that with the love of his parents, Ryne can and does lead a very satisfying life.
Yes, parenthood is a roller coaster. Sometimes all you can do is hang on tight.
#147;Parent-to-parent: A special connection#148; is here to help parents raising a child with special needs know that there are community connections and resources to help you through it.
ŸSherry Manschot is the marketing/public relations manager at Western DuPage Special Recreation Association. She leads a parent network of special needs families at WDSRA. Manschot can be contacted at sherrym@wdsra.com. More information about WDSRA can be found at wdsra.com.