As with every new chapter in your life, you prepare for your long-awaited miracle baby. You line your bookshelf with knowledge-what to eat, how to sleep, what to expect, the doctor’s visits and your list of questions. Giving birth is like the world outside does not exist anymore. The moment you hold her and look in her eyes your world changes forever, welcome to the club.
You proudly stroll your miracle around for the world to see. They grow, smile, coo and melt your heart. Then one day you notice that your baby does not act the way the others do, she is not sitting up, she cannot self-feed, your instinct sends off signals that consume you. However, you get reassurance from your doctor, family, friends, “oh, they all do such and such at different times. Just be patient.”
Then preschool starts and she seems different next to the other kids, she is quiet, she does not participate, she cannot focus. At home she is alert, attentive and smart, she knows the alphabet, she can count to 10. School calls, ‘we are concerned,’ they say, ‘perhaps you should consult a neurologist.’
Fast forward, the bookshelf is now filled with topics such as sensory dysfunction, social and emotional development. Dr. Stanley Greenspan is a household word. You have textbooks on raising a child with special needs. As you remove the Secrets of the Toddler Whisperer and replace it with Special Kids Need Special Parents you realize that somewhere along the journey of early parenthood you needed to take a different route.
There really are not any books that address your particular situation with your child, you have to dig, research and learn new phrases. You take parts of one book and combine with parts of others until you have files upon files of references. Your computer is a history of resources, shots in the dark and gut instincts that got your child the diagnosis they needed for success.
School becomes an entirely new area to challenge your very meaning of the word education. How little did you know what this world looks like, feels like; there are boulders to move and on occasion, someone comes along who gives you hope.
In the meantime, you feel compelled and obligated to pass along your journey to those who are just beginning to navigate it. We will always be parents of special needs children, no matter their age. We all understand the rules; no two situations are alike, your outcome and mine will not matter, we will cheer and celebrate each other unconditionally and then it will become your turn to pass along your knowledge.
In the meantime, you want to hold your child up to the heavens and say “look what she can do, she is amazing” and I thank God every day for the ability to raise this child whose very presence has given me the opportunity to enter a world that teaches more than any Ivy League school could do, that represents triumph more than any triathlete has ever experienced and humbles the strongest of character.
Being the mother of a child with special needs awakens your soul and makes you look difference in the eye. It changes every relationship you have known, spouses, friends, even some family members will not take this journey with you. You do not have time for petty arguments, you have a child to advocate for and every minute of every day will be committed to making sure she has the best possible chance.
We don’t give up. We never quit, we can’t.
We will hold our children up and catch them when they fall and when they have accomplished another victory you just smile at them and say “I knew you could” even when you secretly thought they couldn’t. We are witnesses to daily miracles. And we know deep in our hearts that we are the lucky ones because once you enter our world you realize how beautiful each of our children are.
Tammy Novak, of Chicago, is mom to Julia, 8.