Friday, June 28, 2013

How the Pro-Life Movement Can Help Families of Children With Special Needs

I'm giving a talk at a pro-life conference tomorrow. I can't decide if I want people to wish me luck, or wish me laryngitis. In any event, here is what I'm planning to say. If you see any glaring errors, speak now or forever hold your peace! (Alternately, you may send chocolate, and tell me my hair looks nice)


I’m one of the lucky ones. I was raised in a strong pro-life family and I’ve always considered myself pro-life. A while back, maybe even before I was married, I remember thinking that, God-willing, I’d have a big family, and that when I was in my 40’s, I’d probably have a child with Down Syndrome. I didn’t think of it as a good thing or a bad thing, just…that’s what happens.

What I didn’t expect was to have a child with Down Syndrome when I was 30 (which is weird, because I’m only 29 now).  We didn’t know Julia had Down Syndrome before she was born, and the news definitely took me by surprise. We were fortunate – the attending physician spoke to us in a very gentle, non-threatening manner, and simply said, “We’ve noticed some features consistent with Down Syndrome.” My initial reaction was to think, “She doesn’t have Down Syndrome, YOU have Down Syndrome.” But then my husband turned to me and said he had noticed those features, as well. When they brought Julia back over to me, I took one look at her and realized, “Yeah, she totally has Down Syndrome.” Even though it took almost a month to get the chromosome analysis results back in, everyone was operating under the assumption that Julia had Down Syndrome from that moment on.

Statistics show that an overwhelming number of women who receive a prenatal diagnosis of Down Syndrome choose abortion, upwards of 90%. I can’t even comprehend those figures. Down Syndrome advocacy organizations, like the Mass Down Syndrome Congress, are working to ensure that women are given accurate, up-to-date information with the diagnosis, and that doctors are trained to deliver that information in a neutral manner. But for many families, the medical community served to only deepen their fear, hurt, and confusion by attempting to schedule an abortion after a prenatal diagnosis has been made, or by warning of looming disaster should the child be born.

As I said, we were very fortunate. The doctor on duty did not present this as a bleak situation, or one that we should’ve “remedied” sooner – and I’ve heard horror stories, stories of doctors attempting to schedule abortions right after a prenatal diagnosis has been made, or telling a woman who’s just given birth to a child with Down Syndrome that she should’ve had an abortion because having a child with Down Syndrome would put such a strain on her marriage that she’d end up divorced. Everyone in the hospital in Lancaster, Pennsylvania, where Julia was born was very kind and supportive. Nobody told me how to feel, they simply asked how I was doing or what I needed. They brought books and pamphlets. When they would examine Julia, they would declare that she was the most beautiful baby in the hospital. One of the doctors on rotation had a friend with an adult daughter who has Down Syndrome. The doctor offered to put me in contact with her friend. I figured we’d chat on the phone some time after I went home. The next thing I knew, her friend and her friend’s daughter were in my hospital room, with gifts for Julia and me.

Reactions from family and friends were mixed. Some were quick to tell me what a blessing I’d received. Others apologized. A few simply didn’t respond to emails or texts. None of those was particularly helpful.
Julia is a tremendous blessing and I wouldn’t change a thing about her. But timing is everything. When I first received Julia’s diagnosis, my head was spinning. I was tired, I was confused -- I had been caught completely off-guard. I didn’t need people telling me how to feel. I needed people to tell me that they were there for me, to support me through this journey.

One of the books they gave me at the hospital was titled “Babies With Down Syndrome” and the cover featured a little boy with Down Syndrome. I couldn’t look at that little boy for the first month. It’s not because I found him offensive or I thought he shouldn’t have been born. I just needed time. Now, I wouldn’t bat an eye at that book. In fact, I’d probably pick it up and fuss over how cute the boy on the cover is. But it just takes time.
Not long after Julia was born, we became acquainted with an organization called Reece’s Rainbow, which helps families in the US adopt children with Down Syndrome and other special needs from overseas, children who would otherwise be left to languish in horrid mental institutions. I wept as I scrolled through the pictures of all the sweet babies waiting for a family, and I was struck by the Reece’s Rainbow motto: “Because every family deserves the blessing of a child with Down Syndrome.” By then, I agreed. But my husband didn’t. Not yet. He does now. But it takes time.

Because those statistics are so horrific, I am often reluctant to discuss the struggles associated with raising a child with Down Syndrome. I’m afraid that if I say that’s it hard, people will look at those 90% figures and conclude that those women made the right decision. I have always been pro-life, and we would’ve never considered an abortion if we’d known about the Down Syndrome prenatally. But the truth is, sometimes it is hard. And it doesn’t mean Julia isn’t a blessing, or that she’s a lesser human being. She’s just a kid who comes with some extra work.

Having other people recognize those struggles would be enormously helpful. Sometimes folks, however well-intentioned, are quick to paint a picture of Julia, a stereotype really: “Oh those Downs kids, they’re just angels. They’re so loving.” It’s true, Julia does have a unique capacity for love and it is her primary means of engaging with others. But it’s also true that at 2 years and 2 months, she still gets virtually all of her nutrition from a bottle, and can barely eat pureed baby food off a spoon. One time, after a particular difficult feeding session, my father remarked, “I thought these children were supposed to be so loving!” Julia is incredibly loving – but she’s still a toddler. And many things are harder for her than for the typical child.

We make frequent visits to Children’s Hospital, where Julia has many specialty medical appointments to check her various issues: her heart (she has a congenital heart defect, as do many children with Down Syndrome), her eyes (they cross, and her tear ducts were clogged), her ears (she had fluid in her middle ear and some hearing loss), her tummy (she projectile vomits milk and soy products), her brain (she used to have unusual head movements upon waking, and then an involuntary head bobble), her thyroid (many children with Down Syndrome have thyroid problems), her speech (her speech is delayed due to cognitive delays, low muscle tone and hearing loss), her feet and legs (she wears orthotics on her feet to give her extra support for walking)……

We are so blessed to have so many fantastic medical resources at our disposal, and all of Julia’s doctors have been great. At her recent cardiology appointment, after declaring that Julia does not require surgery at this time, her doctor even made a point of saying, “She’s really cute.” But it can still be hard. Taking 2 kids to the Longwood medical area, then waiting 2 hours because the ophthalmologist is running behind schedule, then driving home in rush hour traffic with a screaming baby who didn’t like getting her eyes dilated…that’s stressful. It would mean so much to families in these situations to have people recognize that these stressors exist. A call or a visit, or even a meal every now and again, would do so much to rejuvenate tired and weary parents.

We have so many wonderful life-affirming people here in the pro-life movement that sometimes I have to remind people to make a fuss over our other daughter, Anna. She is a great big sister and recently said to me, “If I have a baby with Down Syndrome in MY tummy, I’m going to say Yes!”

The Down Syndrome advocacy organization here in Massachusetts, the Mass Down Syndrome Congress, does a great job supporting families, educating professionals, and empowering individuals with Down Syndrome. They have worked tirelessly to show the many things people with Down Syndrome can do. That’s great, and I’m glad Julia will have more opportunities than she would’ve even just 20 years ago. This time last year, Gov. Patrick signed into law “An Act Relative to Down Syndrome Genetic Test Results,” which requires providers in Massachusetts to offer accurate and culturally-sensitive information when delivering a prenatal diagnosis of Down Syndrome. Expectant parents are connected with current parents of children with Down Syndrome. This is due in large part to the efforts of the Mass Down Syndrome Congress. They fall short, however, by not taking a stand in the abortion debate. They are tireless advocates for people with Down Syndrome, but not for the unborn. With the development of new non-invasive prenatal tests for Down Syndrome, those staggering statistics, which indicate that 90% of women opt for abortion when given a prenatal diagnosis of Down Syndrome, could rise even higher. This is an area where the pro-life movement could be a great asset, by recognizing not simply the potential of individuals with disabilities but their inherent worth, regardless of ability.  At the end of the day, Julia’s worth comes not from what she can do, but because, as Dr. Seuss wrote, “A person’s a person, no matter how small.”

Julia at 6 weeks, 5 days gestation

Tuesday, June 18, 2013

A Little Slow on the Uptake

I'm talking about myself here. I'm a little slow on the uptake. Julia, on the other hand, has been clued in for quite some time. This time it involves a relationship with one of her therapists. Julia receives in-home therapies through a program called Early Intervention. Children with a wide range of disabilities are eligible for services such as physical, speech or occupational therapy from the time they are born until they turn three. Having Down Syndrome automatically qualifies someone for Early Intervention.

We've lived in 3 different states in Julia's 2 years, so she's seen her share of therapists. As with anything in life, we've connected with some better than others. But one in particular just doesn't seem to be the best match...and Julia's known it for a while.

It took me much longer to figure things out. I liked the therapist as an adult to talk to, and often by the time the therapist would arrive, I was so starved for adult conversation, I'd talk to anyone about anything. For a while, this helped hide the fact that the therapist almost never directly engaged Julia. Over time, however the interactions they did have became very adversarial. It got to the point that Julia cried as soon as this therapist came into our house. Eventually, the sessions evolved into me talking and not much more. I asked myself why I was talking so much during these sessions. Then the lightbulb went off: I was simply trying to fill the awkward, painful silence.

At a recent session involving this therapist, Julia demonstrated that she had made substantial progress, and I was heaping praise on her. Julia turned to the therapist for feedback and got nothing. The therapist wasn't even looking at Julia. I finally had to get her attention and tell her that Julia was seeking applause. It was only then that I realized why Julia had been so resistant to this particular activity and therapy. She knew the person forcing it on her didn't much care for her and wasn't even going to try to make it enjoyable. Only when I took a couple weeks off from this particular activity to regroup did I realize I had to work with Julia, not against her. Only then did we began to make progress. (Talk about slow on the uptake, right?)

So now the question becomes, how do we address this at Julia's upcoming IFSP review? I already had the current EI providers change one of her therapists because we had a bad match. Why does it always seem to be a battle between parents and providers? Veterans in the special needs parenting community, what say you?

Just look what I can do!