my dear friend bethene, graciously agreed to guest blog this week! her son josiah is amazing! and bethene says this so eloquently.....
MY SON IS NOT A BABY, BUT HE IS MORE ALIKE THAN DIFFERENT
As a mother of a child with Down syndrome, there are lots of interesting and many not so interesting events that take place quite frequently in my everyday life. A recent episode caused me great pause and reflection.
Recently, in the course of our everyday lives, I was at a very public setting with lots of parents and kids. Josiah was nicely sitting at a table (during one of his “I want to do this, not what you want me to do, Mom” moments). A lady walked by and saw him. Ultra dramatically she exclaims, “OH MY GOSH, LOOK at this BABY!”
Standing just feet away, I was totally dumbfounded and silenced. My jaw probably even dropped.
Now, Josiah has been called “baby” quite regularly, but NEVER has anyone been this dramatic. Even as a newborn few people recognized him as having Down syndrome. If they did, I knew they had some sort of personal connection. No one ever fawned over him this way. Mind you Josiah is now 10 years old, 49” tall and let’s just say bit hefty in size.
I took in a breath and swallowed. In the mean time the woman prattled on, “Oh, is he yours? Is this your baby?” I breathe out. In goes another breath. Very directly, I say, “Yes, this is my son. But he is NOT a baby.” Another breath out.
She goes on to talk to him, telling him how adorable and precious he is. She asks me his name, about his school situation, etc. The whole time she is fawning over him, even touching him, much like a person would a newborn in their family. Seriously, she could have been a newborn’s grandmother! Exclaiming over and over how adorable he is. In the course of our conversation, I find out she has school age daughter, who I believe is younger than Josiah with learning delays (I think she meant Down syndrome, though she never said).
We talk a bit more, as I try desperately and hopefully not so obviously, to get Josiah to move out of this extremely uncomfortable situation. Finally, he stands to move on.
As we are leaving, I think… “Wow, she sees things totally different than I do. Is she involved in our parent support group? I don’t believe I’ve ever seen her before. Maybe I’ll get a chance to interact with her more hopefully without Josiah around! Did I seem rude and unwelcoming? Was I overly edgy? Do I say anything else? WHAT TO DO, LORD?” So I tell turn and heartfeltly say, “It was nice to meet you.”
She rapidly responds, “Yes, it was good to meet you. And I know he isn’t a baby, but he’s so precious and adorable and he’ll always be a baby to me.” I think she meant he’ll always be special, precious, cherished. At least I hope so.
I told her, “Ah, but he is 10 and he is a big boy and he likes to be called a big boy.” And we part ways.
Seriously, it has taken me a long time to process this interaction. Josiah is precious and sometimes quite adorable. I’ll admit I did not adore him just then… I was rather perturbed at his (all too frequent for my tastes) stubbornness. But I cherish him; I value his life. I love his opinions. And he dislikes being called a baby. Once he boldly proclaimed, “NO! Not baby, Josiah BIG boy!” Every since we have affirmed him in that area. In his presence we brag to each other about him. For example, “Wow, look at the BIG boy. Did you SEE that, Josiah just took initiative and fed the dog!” We even use it as a motivation to stop more childish behavior. “You’re a 10 year old boy and 10 year old boys behave like this, not like that. Where is MY Josiah? Please have him come back. This seems like a little boy.” It can be quite effective.
After taking some processing time since this event, I’ve decided a couple of things. One, as long as I have lived in the South, I am not a Southerner. People here seem to call him baby a lot. Most people don’t think twice about it. Even though it may not be just a southern thing, I do think it is more frequent her.
Secondly, I’ve decided it is okay to speak up. You see, I’ve taken a pledge to “Spread the word to end the word” (http://r-word.org/) and I will usually speak up when the “R” word it used in my presence. Education has been, and continues to be, my priority. I try not to get offended or angry. After all, I may have made similar mistakes before my personal education.
So, now I have decided that I will continue to seek to use the opportunity to kindly educate when people call Josiah a baby. Really, I do get that he will ALWAYS be my baby… so will Micah and Chairs, our other kids. But people don’t directly call them a baby. And neither do I with the exception of those rare moments like, “My baby is going off to college, sniff, sniff.” I’m still working on several possible speeches in my mind. I’m sure much like with the “R” word, I will sometimes choose to let the moment just pass. Usually I do this when I’m too overwhelmed or tired to make the effort. But if a doctor ever tells him to “Hold still, Baby” again, I think I’ll simply say, “He would prefer you say ‘Hold still big guy or big boy.” Or maybe I’ll reiterate as I’ve done in the past “Josiah, you are a big boy, please hold still”. But mostly I’ve decided I will begin to encourage Josiah to respectfully say “I’m a big boy, thank you.”
Finally, more than anything, I have had to process how differently we may view raising our child than some people. Some parents may be happy to have their child progress slowly and stay dependent. Some people have goals for their kids that involve safety and security as a top priority. Perhaps they don’t want their child to grow up. Perhaps they have given up and are tired of the battle.
However, we seek to help Josiah to grow and learn to the best of capability. I want to help him become his own self advocate. Really, it has never been different than my desires for my other kids. It takes him longer to learn. He may never be a rocket scientist, but then again, neither will my other son! Yes, Josiah can be especially huggable and adorable at times. He can melt my heart. He can infuriate me too. But we will continue to work towards his development.
You know, it isn’t that much different than the differences I’ve experience with parents of “typical” kids. Some focus on education; some focus on friendship and popularity; some allow sex and drinking and even drugs at their homes; some instill faith values; some don’t. Some choices may be wrong, others are just different. We all make choices about how to raise our children. It is part of the responsibility of parenting. We have to live with those choices and the fall out of them. It really is “More alike than different”. This National Down Syndrome Congress video says it all.....
More Alike Than Different!