Wednesday, September 14, 2011

Out of Left Field.

Ever have a smooth day when all of the sudden, out of left field, comes something you were completely unprepared for? 

We had one of those rare days where we weren't completely swamped with patients and could actually leave the building for a real lunch break, today. Most of us took advantage of that fact.

As it often does, conversation turned to marriage and family, with the single gals fielding questions about marriage and the married gals fielding questions about children. Only 2 of us in the group actually have children. We weren't fielding questions at all. ;)

The conversation took a turn and left me feeling as if I'd been sucker-punched. 

One of the single gals declared, "I just want to have a child before I'm 35." She was asked, "Why 35?" and my stomach started to churn a bit. 

I knew what was coming.

"No offense, Tara, but I don't want a Down's baby."

Rationally, I understand where she's coming from. She's young and is lacking the experience to see that life is not so easily controlled. She has no children and doesn't yet understand that all children have special needs. She doesn't have the spiritual wisdom to know that children are a gift, not a right, no matter how many chromosomes they sport.

Emotionally, I was a bit undone. I know what she said, but I heard, "I don't want a child like yours. He's not good enough. I will avoid one like him at all costs." My momma bear instincts were rising up and I'm afraid I was rather snarky in my response.

"You do know," I said pointedly, "that 80% of babies with Down syndrome are born to women under the age of 35, right?" She did not. The rest of the conversation is a little fuzzy as I tried to get control of my emotions.

Eon is not a mistake. He isn't a tragic accident. He is not a statistic to be avoided, or worse, a problem to be terminated. He was born in the image of an Almighty God who chose for him to be here. He is a gift. I am blessed to be his mom!

Honestly, it is harder (in some ways) to parent a child with Down syndrome. I'm sure even more complications will arise with age. 

But, I many difficulties are a true result of the extra 21st chromosome, and how many are simply a result of our culture? If ignorance, discrimination, self-absorption, and a general sense of entitlement were not part of our societal norm, would it be easier to raise a child with special needs? I think it would.

My life would be easier if I didn't feel like I had to defend my child's very right to exist. If I didn't feel like I had to prove to everyone how very worthy he is of acceptance, I could relax and enjoy him. My life would be cake if I didn't have to counteract basic ignorance of Down syndrome that I encounter almost daily (Ex, this week alone: Ds is caused by vaccines, only women over 35 have babies with Ds, "they're all so happy," "most of them can't talk," "you can teach them to read?", etc.).

The only frustration I have currently that is actually related to an extra copy of the 21st chromosome, is that Eon can't yet verbally communicate with us and I am certain that he one day will. (He's only 2 1/2.)

I wish that she could truly see how this child has my heart. How he has enriched my life in ways the "typical" children cannot. How he embraces life and expects us to do the same. How he is so very much like his typical peers and his differences only enhance him; they do not define him. 

She really doesn't know what she's missing.

Saturday, September 10, 2011

Maybe he's just 2

Lately, I've been struggling with Down syndrome. At 2 1/2, Eon has rockin' gross motor skills and does pretty well with self-feeding and other fine motor tasks. Speech, however, is a whole 'nother ball of wax. 

He used to have words. Up to fifteen, in fact. I don't know where they go, but they're gone. We no longer hear, "gallup, gallup, gallup" when he wants up or "goggie" when he sees the family pet. We don't hear "ook" when he wants to be read to. Those words are just gone and they've not been replaced.  He continues to sign and adds to his signing vocabulary almost daily, but he doesn't attempt to speak. He seems lost when asked to imitate sounds or words, too. It breaks my heart. There are so many choices and ideas when it comes to speech. So many things to try and so little time. I don't know where to put our focus because no one has done any research into best speech practices for our kids. What if we waste our time pursuing something that won't help and ignore something that will? I'm looking into prompt therapy, sight reading, augmentative communication, or stopping signing altogether in hopes it will encourage spoken words.

What he does do when he's excited, frustrated, bored, hungry, feeling left out, or any other emotion is yell, "MOOOOOOOOW!" often repeatedly. Shushing him doesn't help. Whispering back doesn't make him stop. Telling him a firm, "NO" doesn't work, either. Honestly, it sounds a lot like a large, distressed cow. And it makes me cringe. He sounds very much like a person with special needs.

My reaction reveals a lot about me. It uncovers a boat load of pride and prejudice which have nothing to do with the classic novel. I'm embarrassed that my son makes noises that draw attention to him and the rest of us. I'm ashamed that I'm embarrassed. I'm frustrated because I don't know how to make him stop. I'm mortified that it reveals a prejudice about me. Why is it so important to me that he sound "normal"? Why do the looks of pity or irritation that we receive bother me so much? How can I expect other people to accept him, when I'm struggling to accept him, myself? 

And then it occurs to me. I have had the occasion to parent a 2 year-old five other times. They have all been really good at being two. I have not enjoyed my outings with them. Their behavior was obnoxious and often mortifying. They were unpredictable and made me question my parenting skills. They caused people to stare with their tantrums. I received looks of pity and irritation. I was embarrassed.

Why should my experience with Eon be any different? Have I bought into the myth that people with Down syndrome are all "so happy"? Or did he just spoil me by being such a good baby? Why do I insist on making everything about Down syndrome? 

Maybe, Eon's just 2...and he's really, really good at it.