I have started to join many websites and Facebook pages from or about parents of children with special needs.
In my attempt to research Brady's rare chromosome disorder, his various special needs and conditions and overall thirst for knowledge about what is happening to my special little boy, Brady, I have found wonderful websites and amazing parents behind these sites, blogs and pages. Some sites are specific to certain conditions and needs. Others are sites that make it their mission to provide information and support to parents of children with special needs...every special need.
Recently, a pretty remarkable site posted a question on their Facebook wall...."You knew you were a parent of a child with special needs when...." I chuckled to myself for a minute as I read this...this was not a question for me...but then it hit me...yes it was. Our journey with Brady is filled with so many twists, turns and forks in the road. He was a sick little boy when he was born...but not a child with special needs. He didn't smile when he was an infant...but he was not a child with special needs. When he turned one, he wasn't walking, or standing or crawling or really even moving...but he was not a child with special needs. For many months, even years, despite multiple visits to multiple specialists, Brady's doctor had told us that Brady was not cognitively impaired, he was just "a little behind." We listened to him. We believed him. We wanted to believe him.
After multiple visits to the Genetics Department at Children's Hospital...we learned Brady has an extremely rare chromosome duplication. We learned that we are parents of a child with special needs. I learned I will always be a mom of child with special needs. I stopped and really thought about the question posted on that website. When did I know? When did I really know that my little boy...my special little guy, who lights up my world with his big blue eyes, is a child with special needs?
I don't believe there was a "moment" when I knew I was the mother of a child with special needs. When I look back to those early days in the NICU, I suppose I should have known. I knew that Brady was special the moment he was born. Special because he was mine. Special because he was the precious sibling of his big sister. Special because he was the little boy my husband had waited for. Special because we loved him and were so excited to meet him. But he was also "special" because he had blue eyes and blond hair. I should have realized it then. Blond hair? Blue eyes? My husband and I have brown and green eyes respectively, and dark brown hair. Molly looks like a perfect mixture of us. Brady looked so much like Molly in so many ways, but not the hair - blond hair that was almost white and piercing blue eyes.
Now, after genetic testing, we know that those distinctive features arose out of his chromosome duplication. I imagine that holding a baby and then a toddler, who was so weak and floppy, you were afraid you would break him when you held him, should have been a sign that we had a child with special needs. We thought, or maybe we just wanted to believe, that he would outgrow this and his muscles would gain strength with time. After visiting neurologists and years of physical therapy, we know that hypotonia means low muscle tone, not strength, and the hypotonia doesn't just "go away." I guess all those visits to physical therapy, and occupational therapy and speech therapy, should have all been times when I knew I was a mom of a child with special needs. When Brady had to have his first psychological, and then his first IEP months later...those were probably times that I knew I was the parent of a child with special needs. Half way through Brady's first year in our local school district's special education program is a pretty obvious sign that I am a parent of a child with special needs.
When I think back....I have always known. I have always known that Brady is a child with special needs. He has a rare chromosome duplication that has manifested itself in cognitive impairment, hypotonia, laryngomalacia, sensory issues, an inability to communicate verbally and no attention span. These are not all "medical" terms...but they are our ways to describe Brady's unique "special needs." If I stop and think back...there are moments at every turn where I knew Brady was a child with special needs, by the way I acted or reacted to these moments. The times I lied to the cashier at Target about how old Brady was, since he couldn't wave back to her or answer her questions when she spoke to him, those were moments I knew Brady was a child with special needs...I sometimes still shave a year or two off his age, when someone looks at him with that puzzled expression when he doesn't respond to their questions of "how old are you?" or "hi!"...it is just easier than explaining our bad luck at having his 1st chromosome tip duplicated.
When I had to finally bring myself to ask our pediatrician what we will do when Brady outgrows those size 6 diapers he is in right now...since those are the biggest size the stores carry, and we are so far away from potty training...that was another time I knew I was a parent of a child with special needs. The list is long...the list of times when I knew or should have known that I was a parent of a child with special needs.
It is a way of life for us now. We are learning to accept Brady's special needs, his special abilities and our special challenges. There is also a long list of times we celebrate little things....because they are so special and because Brady has had to work that much harder than those around him to accomplish those little things. That list includes this past Friday night, when went to a high school basketball game to watch my niece dance with her dance team at halftime. Originally, Molly and I were just going to go, because Brady doesn't like crowds or loud noise and does not sit still for anything or for any amount of time. But something made us want to bring Brady along and go out as a family. Brady was so frightened when we entered the gym...he held on to his dad and his coat for dear life...he wanted to leave before we even got seated in the bleachers...but we stuck with it and stayed.
Then, something incredible started to happen...Brady relaxed...a little bit, and started to watch the game. Then his cousin entered the gym and danced and Brady watched and he even clapped for Rachel. We stayed the entire game and Brady sat and watched and was so proud of himself walking out of that gym...like any other little kid. It was an evening to celebrate. It was ordinary and unremarkable to so many...but to us it was so very special. These moments are moments that are celebrated because we are parents of a child with special needs. But I celebrate these moments and so many others, not because Brady is a child with special needs, but because he is my son...that adorable little boy who smiles through his eyes and loves unconditionally....and that is what makes him special.