I swear, anyone who thinks baseball – and particularly Little League baseball – is boring, well, I just couldn’t disagree more. Today’s game between the Phillies and the Angels – wow! What a game!
By the third inning, the score was 4 – 3 Phillies. Then the Angels passed us up and we were down by three. There were some bad calls by the umpire (who, it turns out was only 14 years old, poor kid), which resulted in some drama in the stands by an overzealous parent. We gained two runs in the fifth but were still down by one.
Oh the suspense! This is AA, and there is a six-inning limit with a drop dead time of two hours and fifteen minutes.
Time was running out. In the top of the sixth inning, we handily got the Angels’ batters out one by one.
Then it was the bottom of the sixth. We were still down by one run. We had six minutes until the game would be called. Joey was up to bat first. Mothers were screaming and clutching at each other in the stands (okay, I was one of them). He hit a single! When the next batter was up, he stole second, and then third! The next batter hit a double, bringing Joey home for the tying run!
In the very last minute – no kidding, the very last minute – we made the winning run. I cried – I couldn’t help myself! The boys were beaming! My heart swelled with pride in all these boys who have worked so hard to come this far.
It seems like only yesterday I was biting my nails and willing Joey to swing and make contact with the ball back in Rookies. Now, he’s full of confidence, and when he gets up to the plate, it never fails to put a hitch in my chest.
Man, I love that boy. And I love this game!
There was an interesting exchange on Facebook today. It began with a review of Kelle Hampton’s soon-to-be-released book, Bloom (not an extremely favorable review – and how did she get an advance copy, anyway?!), and segued somewhat into the topic of this whole “Down Syndrome Parenting Community.”
I dunno . . . I think the concept of all of us parents who have kids with Ds being a “community” is a bit of a myth, or at least a stretch. I think there’s this notion that because we have that in common, it creates this automatic bond between us all. I think at some point, I even believed it. For a while, I was even part of this super secret group of a handful or two of Ds moms. At first it was really cool – even though several of us didn’t know one another at all before the formation of the super secret group, we did sort of instantly bond – or thought we did, anyway. But as time went on, skirmishes arose and things got ugly and it didn’t work out (well, actually, for all I know, they’re all still going strong, but I parted company many moons ago). Because the fact of the matter is, (a) groups of women notoriously don’t get along for the long-term (that’s my theory, or observation, anyway – women are emotional and competitive and catty – not that I don’t think women are awesome! Heck, I am one!), and (b) a group of parents of children with Down syndrome is as varied and diverse as any other group of parents.
Yes, having a child with Down syndrome gives us some common ground . . . sort of. Children with Down syndrome are also very diverse and varied, so it’s not like every experience raising a child with Down syndrome is the same. Many of us experienced similar emotions upon receiving our children’s diagnosis; many of our children have experienced the same or similar health issues; on some level, many of us can empathize with each other about the fears and frustrations we experience, and the pain we feel in the face of society’s prejudices towards our kids; many of us have fought the same battles with school districts and can share information and advice with one another regarding things like education and services. But very often, that’s all many of us have in common – and while that may seem like a lot on paper, in the grand human landscape of life, it’s often very little. We still all come to the table from diverse backgrounds and belief systems, and we bring with us our own idiosyncratic personalities, values, parenting philosophies, and dreams. It’s not like when you join this “club,” you’re a dues-paying member who takes a pledge to uphold certain ideals.
My point? It would be nice if we could all respect each other, but to think that we’re all going to like each other all the time – or even feel supportive of what other parents are putting out there – is unrealistic. I know I’ve got my detractors, and yeah, it doesn’t feel too good to know that there are people in this “community” who don’t like me or get me. Likewise, there are parents out there I just can’t relate to, and some I just plain don’t care for. (And most of them I can just ignore – except for the ones who have a constant spotlight shining on them – those are hard to ignore.) The awesome, thing, though, is that there are parents out there who you find you actually share more common ground with than just having a kid with Down syndrome, and that’s where actual friendships take root. And that’s the most I think we can hope for on this twisty, turny path.
When Finn was a newborn and doing his time in the NICU after his surgery, I was given a little flannel doll by the nursing staff. I wrote about it during that dark and woozy time:
I walk around with a ragdoll the NICU provided me with, stuffed into my bra for Finn. I sleep with it as well. I hope when he is able to have it, my scent will help him remember his mommy when I can’t be there with him. I hope it makes him somehow feel how very much I love him.
It was a sort of bridge between me and my new, sick baby. I couldn’t be with him all the time, I couldn’t snuggle with him and wrap myself around him as I longed to do, and the doll came to represent his missing form for me on some level, and a way for him to know his mommy’s presence through scent.
When he came home, I placed the doll in his bassinet with him, where it remained until he finally outgrew the bassinet and moved into a crib in his own room. At that point, I put it away in a drawer in his room. He had never really developed any attachment to it; I think I had hoped it might become his “lovey,” but it never did.
All this time – three years now – it’s been stowed away in the back of a drawer, along with baby blankets long outgrown.
Then this morning, I found it in the girls’ playroom, casually tossed aside with a pile of toys, forlorn and undone.
It used to have a little yellow flannel hat stitched on, and a yellow length of yarn tied in a bow around its neck. Now it was just a shapeless piece of flannel with a gob of cotton stuffed inside. I felt like crying. I was furious. Furious that the girls had taken something that didn’t belong to them and ruined it without a thought. That they so casually demeaned something that, as it turns out, means so much to me.
I ranted and yelled at them. And I felt a grief well up inside me. Why did this silly doll mean so much to me? Why have I hung onto this talisman of sadness in the first place? Finn was never attached to it – I don’t even know if he really got something from it during his time in the NICU. I’m still trying to figure out exactly what my attachment to it is. What does it represent? An ability to do something during a time of what felt like utter helplessness? Maybe. And what about now?
Maybe it’s as simple as being a sometimes much-needed reminder of a tough time we got through. Intact and thriving.
Yes, that is in ALL CAPS because I’m shouting for joy!
Let me back up a little bit.
Some of you might remember the nightmare we experienced last year with the school district and getting Finn’s first IEP put together. If you’ve only recently joined the program, in summary, our school district screwed up by beginning the process of transitioning Finn from Early Intervention to school district services late. They then rushed us through the process, cramming a three-month process into less than one month, all the while being complete dicks about the whole thing. They ended up developing Finn’s IEP and holding the first IEP meeting without us, over our very vocal protestations. The whole thing was terribly adversarial, there was no sense of collaboration, and it just completely sucked. Eventually they offered us placement for Finn in a self-contained special ed preschool class for kids with “moderate to severe” disabilities. There were no other options on the table, although we asked – that particular class was all they would offer us. They wanted him to attend all day (6+ hours/day) five days a week (at three years old!). Michael and I visited the class and it just wasn’t at all what we wanted for Finn. In the end, we decided to forego any preschool for a year and just put Finn in speech therapy twice a week – and this was really only conditioned on him being able to get in with an SLP we have a previous relationship with (via Daisy).
Here’s where the drama ended last October.
So Finn has been attending speech therapy twice a week since the end of October. It’s been a positive experience, although I cannot say for sure that it’s resulted in any sort of difference in his language capabilities. He continues to add words to his vocabulary and to understand more and to communicate his wants and needs more and more – but this could very well just be the natural progression of things for him, and I’m sure being part of such a large family who talk to him and to each other all the time doesn’t hurt. (Even his speech teacher says that she can’t necessarily give credit for any of the progress he’s made directly to what he gets going to see her twice a week.) However, he loves going, and it’s given him an opportunity to learn how to share and take turns and follow directions from individuals outside his family, so I look at it as a plus.
As spring has approached, finding a preschool for fall placement for Finn has been my goal, and it’s been something that has weighed very heavily on me. I want him to have a typical preschool experience, with typical peer models. I want him to learn through play, and to be welcomed with open arms. Where the hell was I going to find all that for a kid with Down syndrome? I guess the whole school district experience left a very bad taste in my mouth – and not very positive expectations about what we might encounter when we actually began our search for The Perfect Preschool.
Well, as it happened, it just kind of fell into my lap. I tentatively put the word out to my local friends on Facebook that we were about to begin the process of looking for a preschool for Finn for fall placement, and did anyone have any recommendations? Right away, my friend Christie got in touch with me and said that she had gotten in touch with the preschool her (typical) boys attended. She copied me with the messages that she exchanged with the director, and the director was very open to having Finn (knowing up front that he has Ds). I was so grateful for this – just the fact that I have friends who see Finn as a person, and as someone worthy of typical experiences, you know? Anyway, this program is a co-op, which I may have been able to make work, but I will be saddled with a new baby come fall, so it might not be the most workable situation.
Then my friend Carrie called me and told me about the preschool her son attends one day a week. She absolutely raved about it. Her son is on the autism spectrum, and he attends this preschool one day a week in order to be with typical peer models. It’s a lab preschool at our local community college – right around the corner from our house, as in, we could walk there. And as it happens, another good friend of mine, Jodi, is a professor at this college, so she’s a good connection to have. Both Carrie and Jodi put in a word for us with the director of the program, and I spoke to him at length on the phone last week, and I came away from that conversation so pleased and excited I could hardly sleep that night.
Here’s the description of the preschool from their website:
The Fullerton College Child Development Center and Lab School provide high quality early childhood programs for preschool children ages 21⁄2-51⁄2. Teachers design the early care and learning programs to meet the developmental needs, interests and learning styles of the children. The center is licensed and holds accreditation from the National Association for the Education of Young Children. The Center serves families without regard to sex, race, religion, sexual preference or physical handicap.
In addition, The Child Development Lab School serves as a college classroom for students in the Child Development and Educational Studies Department. Teachers provide an environment that supports and promotes early care and learning through the creation of natural learning spaces where children can investigate, learn and develop.
The hours of operation are Monday through Friday from 7:30 am to 6:00 pm. The Center is open year round and follows the holiday schedule of Fullerton College. There are 2, 3 and 5 day enrollment options. The program is available to students, Fullerton College staff and the greater community. We provide the children with a nutritious breakfast, lunch and snack daily at no additional cost. Please call to visit, check availability and tuition rates or to be added to our waiting list. The Center offers free and reduced cost child-care services to eligible families.
The Child Development Center is a part of the Fullerton College Social Sciences Division and works in conjunction with the faculty of the Child Development and Educational Studies Department.
This is a preschool for typically developing children. However, the director is very enthusiastic about diversity and inclusion. He has a background in special education and a degree in Speech and Language Pathology. He said to me on the phone, “We see every child as whole and capable.” Um, excuse me while I get a tissue, please. The school is no stranger to kids with special needs – they’ve had kids with Down syndrome (although Finn will likely be the only child with Ds for now), they’ve had kids on the autism spectrum, and they’ve had kids with IEPs for other issues.
We went and visited the school today. I wish I had a video to show you of our walk through. It’s seriously like Kid Heaven. They spend a lot of time outdoors, and their outdoor area is amazing – gardens, a tree house, paths, water pumps, and arbor, water tables, plus they’re putting in a sound garden. Very developmental, very hands-on, very child driven. The classrooms are all mixed-age and divided according to space, and there is a 1:8 teacher-student ratio. The classrooms are very much like the outdoor areas – just lots of things to explore, lots of hand-on activities.
Finn got to spend lots of time exploring everything this morning, and he really seemed to dig it. We met several of the teachers, and everyone was warm and welcoming, and not one person gave a funny look or expressed any reservations about having Finn, Down syndrome and all.
And while they typically require children to be potty trained to enroll, they were not put off at all by the fact that Finn is not yet potty trained and might not be by fall.
I asked what we need to do to secure Finn a place on their waiting list, and the director told me, “He’s in. Just tell us when you’d like him to start.”
Somebody pinch me.
Happy World Down Syndrome Day!
Kevin, age 10 – May 2007
Kevin, age 15 – March 2012
He was actually ambivalent about getting them off, said it was like losing an old friend. Sentimental, just like his mom.
His orthodontist gave him a parting gift: a bag of all the braces-wearing no-nos.
Only five (six?) more sets of braces to go!
Everyone, it seems, has heard about the recent case in which an Oregon Couple Has Been Awarded $2.9 Million For the “Wrongful Birth” Of Their Daughter. Articles, blog posts, online message boards, and Facebook have all been rife with emotional responses to the verdict. As for me, I’ve been trying to digest the whole thing and figure out what I, as the parent of a child with Down syndrome, could possibly add to the conversation taking place regarding this case, which comes right on the heels of the new and improved prenatal screenings which specifically target Down syndrome, and the firestorm surrounding those.
Pragmatically, I know that the jury’s verdict (which was reached 12-0) in the Levy case does not necessarily mean that the jurors believe that the Levys’ daughter never should have been born. The lawsuit was brought against Legacy Health for several counts of negligence – basically, the Levys assert that the chorionic villus sampling (CVS) that Deborah Levy underwent at 13 weeks into her pregnancy was carried out improperly – that maternal tissue was taken instead of fetal tissue – and therefore, an inaccurate result came of the test, robbing the Levys the opportunity they had sought to be prepared. And yes, they do say that had they been given the correct result – that the fetus she was carrying did in fact have Down syndrome – they would have terminated the pregnancy, as the vast majority of people seem to do in the face of a prenatal diagnosis of Down syndrome.
Basically, after all the evidence and testimony was laid out, the jurors agreed unanimously that Legacy Health had been negligent and had carried out the test improperly, therefore depriving the Levys of the opportunity to make a decision about the pregnancy.
I can’t find it in me to vilify the jury – although I do absolutely have to question what kind of fucked up world we live in where people can sue for the wrongful birth of a child. The jury apparently did its job, however: they listened to the testimony and they looked at the evidence, and they came to a conclusion – and like I said, their conclusion does not necessarily mean that they agree that the Levys’ daughter should not exist today; it just means that they agreed that the lab that carried out the test carried it out improperly.
I’d like to be able to say that I can’t find it in me to vilify the Levys, either, but I’m having a tough time with that. They have been insistent that they would have aborted the pregnancy had they known that their baby had Down syndrome. And yet, they also claim to “deeply love” Kalanit, who is now four years old. Actually, I sort of get the “I would have aborted had I known” line of thinking. I’m sure there are many parents of children with Down syndrome who, for whatever reason, didn’t find out about their child’s diagnosis until after birth who might say, “Had I known beforehand, I would have terminated,” but that’s almost always followed up with, “But, goodness, am I ever glad I didn’t! I can’t imagine life without him/her.” I wonder if the Levys have ever said that – that they’re glad they didn’t abort. I kind of doubt it; saying that would have hurt their lawsuit.
It seems to me that they have had to hold onto an awful lot of anger and bitterness to pursue such a lawsuit.
I’m still not sure how the multi-million dollar verdict can be reconciled. Apparently, it’s intended to cover “the estimated extra lifetime costs of caring for a child with Down syndrome” to wit:
Miller [the Levys’ attorney] said they sued because they worried about providing all that their daughter would need over her lifetime. Experts testified that she will continue to need speech and physical therapy and face a concerning list of possible medical problems over her lifetime. Professionals have told the Levys that she will likely never be able to live independently, or earn a living.
So the dollar amount was based on expert testimony (originally, the Levys had sought $7 million). Who are these “experts” and “professionals”? Are they the same experts and professionals who paint such a bleak (and outdated!) picture of life with Down syndrome that most parents facing a prenatal diagnosis decide to abort?
First off, speech and physical therapy are paid for by the State. Apparently, the state of Oregon is actually one of the better places to live in the US if one has disabilities and requires services. And the “possible medical problems”? Don’t all of our kids – Down syndrome or not – face a multitude of “possible medical problems” over the course of their lives? Yes, Down syndrome puts one at higher risk for certain health issues, but risk isn’t guarantee, and my understanding is that the Levys’ little girl is healthy. And “likely never be able to live independently, or earn a living”? I mean, gosh. Can we project anymore of a grim or speculative future for this little girl?
I think what bothers me the most about this whole thing is that this case just bolsters the apparent world view that people like my son, Finn, are burdens, errors, mistakes. It not only undoes all the advocacy I and so many other parents have worked so hard to undertake, it paves the way for lots more lawsuits just like this. (And if the Levys so deeply love their daughter, as they say they do, one would think that they, too, would at some point advocate for her, for her worth, her value to her family and to the community. But how can they now that they’ve fought and won a lawsuit that renders her life a mistake?)
I was looking through old photos of my kids over the weekend, reminiscing as mothers do, and it hit me: Finn is the only one of my kids whose very existence I’ve had to justify – ever since the first person asked me after he was born, “Didn’t you have the testing?” like an accusation. This could have been prevented, you know. On some level, I’ve been defending his life since he was born, and I suspect I will have to keep on defending his life for the rest of his (or my) life. And why? Because he’s a little different. Because he’s a little slower. Because he needs some extra help.
These are people we’re talking about! Human beings! Not defective merchandise. Not a dress that ended up not fitting when we got it home. They are people. People we created.
Sometimes it all just feels like a losing battle, the energy and tears and passion I expend to make the world see Finn and people like him as worthy and valuable. What kind of world are we living in?
Thank you, Ariel and Deborah Levy.
I remember when, several years ago, a group of women friends and I sat around chatting, and the conversation turned, as it often does with a group of women, to pregnancy and motherhood. One friend in the group was recounting her amnio with her last pregnancy, telling us all how it really was no big deal. She said, “Of course I had an amnio – I could never handle a kid with special needs.”
In this whole firestorm over the new prenatal tests aimed at detecting Down syndrome, and the ongoing debate about terminating pregnancies when a prenatal diagnosis of Down syndrome is made, there seems to be a common refrain: “Not everyone is cut out to parent a child with special needs.”
Who is cut out to parent a child with special needs? I can tell you that since becoming Finn’s mother, I’ve been told more times than I can shake a stick at that “special kids are given to special parents.” I think this is a well-meaning platitude that sounds good but really doesn’t carry any weight. I can assure you that the badge of Special Parent is only given after the fact. I wasn’t special before Finn was born – and the truth is, I’m not special now, either.
How does one envision a person who is cut out to parent a child with special needs? What traits and qualifications does that special parent supposedly have?
I’m just a regular girl with no special qualifications, and plenty of faults. I’m not especially long on patience; I’m a little on the anal-retentive side; I’m a creature of habit; I value me time. I enjoy a good book, a nice martini (when I’m not knocked up), and an occasional night out with the girls. I think it’s important for my husband and I to have somewhat regular “date nights.” I swear. A lot. I like a good dirty joke and I’m not above potty humor.
I have no special skills – nor are any required of me – to be Finn’s mom. All that’s required is that I love him – and that’s easy. As easy as breathing.
I know that when Finn was born and we learned that he had Down syndrome, I, too, protested: “I’m not cut out for this!” I’m not even sure what I meant. I’m not sure what I, at the time, thought made a person better qualified than me to have a child like Finn.
What sort of picture do people who insist they’re not cut out to parent a child with Down syndrome have of the everyday lives of families of children with Down syndrome? I’m trying to remember what picture I may have had. I don’t think I really had a particular picture in mind, just a sense that there must be a whole lot of sadness and sacrifice involved.
That’s not what our life looks like in reality, though. Our family life really hasn’t changed at all since Finn was born. Michael and I still have date nights, we have two wonderful babysitters who adore Finn and have no qualms about sitting for him and the other kids. We still do Little League and gymnastics and swim lessons. We still take the kids out to dinner and ice cream once in a while, we’ve managed a couple of family road trips, we go to the park and we have picnics. We crank up the stereo and have dance parties in the living room after dinner. We laugh. A lot. We have a busy, raucous house. Finn hasn’t changed that; he’s only added to every aspect of our family life.
What are any of us really cut out for, anyway? Life lobs so many curveballs at each of us over the course of our lives. How many things have you already stood up to and discovered that, yeah, you actually can do this – things you never dreamed you were cut out for? What would life be like if we all could opt out of every challenge or unexpected event that landed on our doorstep? Do we avoid the things in life that teach us, that expand us as human beings, that show us what we’re really made of just because those things do not fit into the plan we had for ourselves? And if so, what does that say about us?
Something to think about.
About Just Write
“What ends up revealing itself when free writing is that everything has meaning. That is a magnificent gift of writing. If we write from a free heart-gut place, our souls start speaking.”
In the morning I sneak away from the cacophony of the kitchen where the five oldest kids are already having breakfast. I quietly open the door to Finn’s room and tiptoe in. The rising sun is just filtering through the closed curtains at his window, bathing the room in a pale gray-blue light. Burrowed face down in his crib, I rub his back and he giggles, staggering drunkenly to his feet in his just-awoken state, and reaching for me to pick him up. I lift him and he wraps his stubby little arms fast around my neck and I carry him to the rocking chair across from his crib, and we sit. He fits perfectly, draped over the mound of my belly containing the sister who will soon replace him as the baby of the family, his face buried in my neck as I breathe him in and savor these few quiet moments with him.
It’s been so easy to keep him the baby – partly because, yes, he does seem younger than his almost four years, and partly because he’s remained the youngest in the family for longer than any of the other kids did except Kevin. Sometimes I feel guilty for babying him as I tend to do, but mostly I’m always thinking about how quickly it all goes by – much too quickly. It doesn’t seem all that long ago that I was curled up in a different rocking chair with Kevin, and in the blink of an eye, he was gone from my lap, itching to grow up.
So I sit with Finn, far past the age I was able to sit like this with the others, knowing that these moments are numbered. For a few minutes, we exist in a cocoon of soft light, of quiet, of breathing together.
Before long, he untwines his arms from my neck and looks at me seriously and says, “Down.” As he climbs down from my lap, he says, “Eat.” He wants breakfast. “Doggie!” he declares. He wants to find Scout, his playmate.
And the moment is over.
And so begins another day.
“It’s not about God, or what the Bible says . . . because not all of us believe in God or are swayed by the Bible.”
I wrote that because I have noticed that so many important social issues are discussed within the framework of faith and religious belief, and I really believe that in so doing, huge sectors of potential audience are alienated.
We need to take this discussion about prenatal screening, about termination of pregnancies, about the sanctity of human life, out of the arena of Christianity. The fact of the matter is that not everyone is Christian, and basing arguments about such important issues in Christian beliefs shuts out and turns off anyone who doesn’t share those Christian beliefs.
You may believe that by invoking God and the bible into your arguments, you’re being a good Christian, you’re being true to your beliefs, you’re scoring points with the Big Guy and earning your place in Heaven – but I can tell you as someone from the other side of Christian belief that it’s just not the way to win friends and influence people. At least not the people you really want to influence: those who are on the other side of a very polarized debate. Sure, your like-minded Christian friends may appreciate your arguments, but they don’t need convincing, do they? That’s just the choir you’re preaching to.
Now, it just so happens that as the mother of a little boy who has Down syndrome, I’m appalled and even somewhat personally pained over the reasons people tend to abort if they find out they’re carrying a fetus with Down syndrome. It hurts, because collaterally, it’s a statement about how my son is viewed: as a mistake, as someone most other people wouldn’t want, as someone most people think shouldn’t have been born. I believe that the reasons behind the majority of the abortions based on a prenatal diagnosis of Down syndrome are misinformed and misguided, and I’m completely in favor of educating people about the realities of Down syndrome in an effort to decrease the termination rate and in an effort to allow Finn to grow up in a world that values him instead of pitying him or marginalizing him.
But it has nothing to do with God. And when people try to encourage acceptance of Down syndrome by saying things like “They’re God’s perfect angels,” or “God made them exactly how they’re supposed to be,” or “God doesn’t make mistakes,” or “They’re God’s gifts, sent here to teach us blah blah blah,” or “ABORTION IS MURDER! ABORTION IS A SIN! ABORTION LEAVES GOD BROKENHEARTED,” well, I just want to scream. Because those statements don’t resonate with me, and I’m sure they don’t resonate with a whole slew of other folks, either – many of whom are the very people who we’d like to see Down syndrome in a new light. Possibly people who are grappling with a brand new diagnosis of Down syndrome and wondering what the heck to do. Throwing God at them isn’t going to help.
Framing the discussion in human terms based in fact – that’s what helps.
We are a society of diversity – diverse ethnicities, diverse cultures, diverse socio-economic positions, diverse philosophies, and diverse beliefs. Not everybody is a Christian. I know it hurts to hear that, but it’s true. And the truth is, in order to unify discussions, God has to be taken out of the equation.