I sent a shout out here requesting input from other parents of special kids, and have compiled what I received along with my own experiences thus far. If I had written this six, seven, or eight months ago, I may have said completely different things - but an overarching theme, without meaning any disrespect, was for people to just shut up and love. Don't bombard people with information and how much of a blessing a child with Down Syndrome is going to be in the early painful days. None of us as parents are asking anyone to fix the broken heart we may have felt in the beginning when the diagnosis is scary. Just give me a hug and cry with me. Reassure me that not only is it normal to feel sad, it's a vital part of the process.
Now these nine months later as Amos's mama, I am no longer in that sad stage, but have been astounded by the similarity of questions and comments that come from people who I trust have no malicious intentions in asking. I am going to address them here, as this sort of What Not To Say guide. Keep in mind I do have a sense of humor that can teeter on the edge of sarcasm - but since sarcasm means biting of the flesh, I do not wish to perpetuate pain on another human being who may have asked or thought any of these questions. I hope I don't offend anyone here. That is not my intention. I addressed a few of these in my post entitled spread the love, but here they all are, listed in no particular order. Some of them are simple, and some are mind-boggling. But that's just me.
1) "They can tell he has that this early?"
My desired response:
Are you joking? Did you not take biology in high school? How did I know it was called Trisomy 21 since grade 11? Three copies of the 21st chromosome, the usual one from one parent, and two (one extra!) from one parent - it's not just a developmental measurement that some kids don't measure up to. It's in their DNA. Chosen before conception. Was either the sperm or the egg, baby.
My actual response:
Yes, they can tell. (while sighing on the inside.)
2) "Are you still praying for his healing?"
I don't even have a desired or actual response for this one. I walked away, fighting tears. Ouch. This implies God didn't know what He was doing. This touches on my response to question #1. Down Syndrome is chosen at conception, or before, really. And if you are a follower of Jesus, you know that God is in control and has His hand in everything. This is not a problem that requires healing. I required healing to understand the blessing God had given me in the package that is my Amos, not the other way around. Ouch. That one is a zinger. Don't say it.
3) "How is he doing?"
This question is a lovely question - except for when it is asked with a thinly veiled condescending tone - this comes with a look of sympathy for what they are viewing as his condition ... spoken with some sense of 'awwww, you poor people, with your little one who has *gasp* Down Syndrome ...without actually taking into consideration he's gazing right at you from right here in my arms, or playing right in front of you.
My desired response:
He is perfect. He was released from hospital nearly eight months ago. He is just fine. He is my baby. He is our baby. He is our child. He eats. He sleeps. He cries (but hardly ever). He poops and pees. He smiles and laughs. He plays with his little toys, at his own rate of development. Just like any other baby. He rolls all the way across the floor. He is a delight. He is the easiest baby ever. He is amazingly cute. That's how he's doing. If someone has a baby in the hospital, you'd ask. If someone has had a baby at home for eight months do you still ask? Once they're well and at home, do you keep asking months and months and months later? No. This is not a condition, Amos is not a victim and neither are we. Please don't feel the need to feel sorry for or feel sympathetic towards us. He is our child. Just like your child is your child. That is all.
My actual response:
He's good. He's lovely. I love him.
4) "Do you know how high-functioning he will be? Can the doctors tell you anything?"
My desired response:
Do you know how high-functioning or how intelligent your child will be - standard set of chromosomes or not? Is the doctor (who sees my child a minutely, microscopically small percentage of the time in comparison to me, as his mother) really going to be the one to tell me this, nevermind when the child is yet an infant? How on earth would any parent of any child answer this question? Should I saunter over to your house and ask about your new baby "do you know how smart she will be?" Huh?
My actual response:
No. Not yet. But he's just fine.
5) "You guys aren't going to try to have another baby, are you? Now that you have one that's kind of broken?"
Again - this would have been another walkaway response for me. It was asked of my husband, not me - and when he reported it back to me, I cried. And then I got angry. And then he thought he shouldn't have told me. Our baby is not broken. Don't say this.
Another lovely mama of a baby with designer genes, Kelly (in Idaho), said one of the most hurtful things since the birth of her precious Nora that has been said to her has been, "So, are you guys gonna try again?" ...to have another baby girl, that is. As if they didn't get it right the first time. Crushing.
Amos spent the first four weeks of his life in the Children's Hospital. Those four weeks were the longest four weeks of my life. I felt like ten years passed in those four weeks. On one visit to see Amos, my dear friend accompanied us. In the car, she was regaling us with stories of her sweet and boisterous boys. In the conversation, she inadvertently used the R-word, and immediately caught herself and began apologizing profusely. I distinctly remember not being hurt so much by her use of the word at that time, but by her thought that she needed to apologize to us because we were now the parents of a boy who could be called that word.
I said "Please don't do that. No no no, please don't do that." At that point I was still so new to this club, and had not considered Amos ever being anything remotely close to the R-word. I stated simply, "Please, just don't call any of my children that word."
I feel differently about it now, but my point is that I didn't want to be treated differently because we had this child now. And I didn't want anyone to feel sorry for us. Don't feel sorry for us.
In many ways, I feel simply by being the mama to Amos and loving him so very deeply that I am inherently becoming an expert on how to deal with having a child with Down Syndrome, how to talk and what to say to parents or families of children with Down Syndrome or other conditions (I don't like using words like conditions - but please bear with me) - but please know I would be the first to admit that I am not an expert. I am far from it. I have only been a part of this club for 9 and a bit months. Some parents are veterans in this club, having raised their children with intellectual disabilities to adulthood. (our children are politically correctly referred to as having intellectual disabilities.) I have only been walking this road for nine months now, but when I look at my child, my Amos, I do not see any disability of any type. So I find even the term disabled offensive. Derogatory. Cruel. He is just Amos.
Amos and other children with Down Syndrome may indeed and will probably have lower intellectual capacity than me, or you, or several other people - but honestly? Some days my husband has lower intellectual capacity than I do. And adversely, some days I have lower intellectual capacity than him. Does this mean we, or anyone should be labelled as such? Does this mean we should be stereotyped, put in a box, and be made fun of? Or *gasp* called even more offensive terms? Retard(ed)? Agh, to even type out the R-word pains me to my very core. I admit, now so very shamefully, that I used this word before I was Amos's mama. I am utterly sorrowful to have ever had that word leave my lips. I'd like to use this opportunity to quote from Spread the Word to End the Word "to help eliminate the demeaning use of the R-word - a common taunt used to make fun of others. Often unwittingly, the word is used to denote behavior that is clumsy, hapless, and even hopeless. But whether intentional or not, the word conjures up a painful stereotype of people with intellectual and developmental disabilities. It hurts. Even if you don’t mean it that way." Definitely don't use the R-word.
Something that was pointed out to me for some of us parents, a big struggle when you have a child with intellectual disabilities and are Christian is that people will freely offer these cliché sentiments that, especially in the early days, are NOT helpful. "God is testing you." "God doesn't give you more than you can handle." You know what? Just don't say those things.
My very closest childhood friend had a tender, honest and careful conversation with me after Amos was born that touched me then, and touches me now. She said "I just don't know what to say."
Much like when someone we love dies, or a relationship ends in a painful and messy way, or we are mourning the loss of something significant... people often don't know what to say. Sometimes this is just a cue to say nothing. Be quiet, and just let the person mourn. And let them know you're present with them in that. It's okay to not know what to say, and to be honest about it.
My friend then sought out information to have a better idea of what to say to me - from another family she knew who has a boy with Down Syndrome. That lovely and wise mother told my dear friend, “Just tell her congratulations. Tell her congratulations just like you would if he didn't have Down Syndrome, because she just had a baby." Ah, when you see it laid out for you, you see how simple it is. The syndrome, the disability, the harsh and cruel reality of it all is not what defines us. One characteristic is not what defines anybody.
I guess what I'm trying to say is that the bottom line is love, isn't it? Love. And sometimes just shut up and be quiet. This love doesn't apply only to Down Syndrome, it can apply to any thing or syndrome or disability or condition that may fall outside the realm of expectedness. A person or a baby or a child who looks a little differently? Who acts a little differently? Who walks or talks a little differently? Shut up and love them. Then speak with gentleness, and admit you don't know what to say. That goes a long way.
The interesting fact of it all, however, is that even as Amos's mama, I struggle with what to say to people, too. Amos is little. He was born nine months ago, but was nearly a month early - but his Down Syndrome makes him a little on the small side. And the delayed milestone achievements make him appear to be younger than he is. So when people anywhere - church, the grocery store, the mall, the park - ask “how old is he?” and I have my now well-rehearsed "nine months, but he was born early and had surgery and so is a little wee guy, blah blah blah" - and once in awhile I also say "and he also has Down Syndrome which makes him a little smaller than a typical baby his age".
But honestly? I'm even tired of the look of shock and deer in headlights look people get when they hear that - but I don't say it very often, because I know it isn't what defines him or defines me or defines us. But at the same time I don't want to feel like I'm sweeping it under the carpet (I felt like I did that for a length of time, pretending he was a typical baby in public places, and just relishing when people thought he was so cute and so lovely and they didn't know his diagnosis). Sigh. But then they were and are days when I see Down Syndrome in his face that made me so very, very sad in the beginning - and now makes me love him even more, and makes me love other people even more, because it is not a bad thing.
When I see other people with Down Syndrome now, too - oh goodness, I just want to scoop them up and squeeze them and tell them how proud I am of them - I think because they remind me so much of Amos. I haven't done it yet - but you know? Once I feel a little braver? Watch me, baby. I'm gonna be a-scoopin'! And in the meantime? It's significantly simple: shut up and love, baby.
Love big. Love all. That's all.