Michael wrote this –
After Finnian was born, and we found out he was diagnosed with Down syndrome—not quite knowing what that meant—I felt as if I had come full circle in some way, as if life had prepared me for having a child with some disability, special needs, challenges or whatever they’re called these days—that’s just society working out the best sounding, most respectful, least offensive “label,” which is really just a way of identifying someone in relation to those in our world who feel it is necessary to do so—in the end, Finnian is who he is.
A little background is in order here: In my earlier adulthood, I spent ten years working with people of varying disabilities, but mostly those who were deaf, and deaf-blind. For six years I lived with my girlfriend at the time, and she was deaf and losing her sight. She had three older siblings who were also deaf and losing their sight. I had a career as a sign language interpreter and advocate for disability rights, and I taught daily living skills in several residential-type settings. My career as an advocate led me, in part, to go to law school. It seemed like a natural transition. I saw firsthand how our society treated people with varying disabilities. Even my girlfriend’s family treated her and her brothers and sister like second-class citizens, and sometimes I had to stand up for her against the rest of her family. It usually didn’t go over very well. Because her family could not communicate with her on a deeper level (many families with deaf children do not become too proficient in sign language), they couldn’t see her for the person she was, that she had feelings as real and meaningful as theirs; that she had a sense of humor; that she had wishes and dreams; and that she could love and feel pain. They may have known this on an abstract level, but they didn’t know her. From what I saw with other deaf children or adults in hearing families, this was by no means the exception. Not having a child who was deaf, I can’t really say I would’ve done better. This part of my life impacted me greatly.
So, when Finnian was born and we eventually learned he has Down syndrome, I felt prepared for whatever may come, that I had come full circle. I remember suddenly feeling that my life up until then had made sense, and everything was now connected. Although I think I would have taken the whole thing in stride anyway, there was a certain peace in that.
And so that was my reference point for the beginning of our journey with Finnian: I was totally cool with it. Seriously, I was. And still am.
Obviously, raising a kid with Down syndrome is not the same as having a girlfriend who is deaf and slowly losing her sight; nor is it the same as advocating for those with disabilities, or teaching daily living skills, so I won’t pretend that until I had a kid with Down syndrome, I understood how it felt to have such a kid, or what it’s like to have a child with serious medical issues. I probably took it for granted that I did.
So far, having Finnian has required us to communicate with him differently. I don’t mean that in a bad way. While he is starting to mimic and vocalize and ask for what he wants more, we still often have to abandon, for better or worse, all of these words we conveniently have to represent abstract concepts and try instead to communicate on a conceptual level. It’s hard to explain, but in some ways it’s more real, and that’s not a bad thing. Yes, we will have to fight for him; we’ve already faced some challenges with the school district, but it hasn’t been any worse than trying not to get screwed at a car dealership. It’s challenging. And some people will just treat him like a second-class citizen, and yeah, it’ll hurt.
I don’t know what lays in store for Finnian. I don’t yet know what his “abilities” are or will eventually be; I don’t know if he’ll be able to live independently or if he’ll be our travel companion; I don’t know what the depth of his understanding of all things intellectual will be—he might not get calculus or biochemistry, but then again neither do I; he may not be the president of his student body, but then again, neither was I; he might not go to his high school prom, but then again, neither did I; and he may never be an astronaut, but then again, neither will I.
But I do know that Finnian digs music. Like many of us, it just gets his foot tapping and he starts to dance. I know that I can’t play the guitar without him grabbing a bongo, or getting on the piano, or having him come over and try to get the guitar from me. He is as entranced by the television as are our other kids. He plays with toys, crayons and books. He gets upset when he doesn’t get his way. Sometimes he gets into the dog’s crate with her, and sometimes he comes out of the girls’ room with one of their pairs of jeans on his head. He’s the only one who likes the dog, and the only one the dog likes.
Most of all, my boy has a heart and has the capacity to give and receive love—not something everyone can do. And I’m not just saying that. It is so obvious that he loves playing with his brothers and sisters, and he loves his parents. What could be more important than that?
I’d say this is a pretty worthwhile life.
Check out these mad fine motor skilz –
This morning Finn had his first speech therapy session at school. It was a group setting; he will be going twice a week, and one session will be one-on-one, and the other is group. There were two other little boys in the group, so it’s a small group. The other two boys seemed to be a bit older than Finn – maybe 4? I don’t know what their diagnoses are, but neither of them have Down syndrome.
This was really Finn’s very first experience being placed in a group in an unfamiliar setting and being asked to follow instructions from someone outside his family. I was a little anxious about how it would go, and it was a little nerve-wracking for me (I did stay for this session; I sat out of the way so as not to be a distraction). While I have no doubt that Finn understands a whole lot more than he’s able to communicate, I really can’t say for sure just how much he does understand.
The speech therapist played two games with the kids, both of which required them to follow verbal instructions, identify objects on pictures, share, and take turns. It hit me then that this is about far more than learning how to communicate – it’s about learning how to interact with people and the world around him, which is obviously a hugely important life skill.
Finn had trouble with the whole thing. At first he was good about sitting in his chair, but the novelty of that soon wore off and he wanted to explore the room. He can’t match pictures at this point – that’s just beyond the scope of his abilities, so there was some frustration. He was his usual cute, charming self, but stubborn and somewhat uncooperative. Which is why it was nerve-wracking for me. I had to just sit back and let it play out, let the SLP do her thing, and not interfere.
The SLP is very good – she’s warm and unendingly patient, and she spent a few minutes talking to me after class, assuring me that the first few sessions for any three-year old usually go like today went, and that I shouldn’t worry or feel discouraged; it will get better as Finn grows used to the routine.
So the big question on a lot of people’s minds (I assume) is: “Will you do prenatal screenings? You know, being that you are of such advanced maternal age. And you already have a kid with . . . well, you know.”
First of all, let me just say that it is so very early that none of this seems real to me yet. I am full of worry and anxiety about logistical and practical things, and yes, the wellbeing (and viability) of the baby . . . but it’s all kind of abstract at this point. I don’t feel pregnant. I don’t look pregnant (shut up). The only thing that tells me there’s a baby growing in there are the three pregnancy tests I took which all fairly screamed “HEY LADY, YOU’RE KNOCKED UP!!! AGAIN!!!! HAHAHAHAHAHAHA!!!”
Anyway, when considering prenatal screenings, I think there are two important questions to consider:
1. What is the potential information to be gleaned from the screening?
2. What potential action would you consider in light of the information you might glean from the screening?
While I did have some routine prenatal screenings done with all my pregnancies except (ironically) Finn, they only included blood tests (AFP screening) and the first trimester screening in my third and fourth pregnancies; I never had amniocentesis or CVS, though I was over 35 for my third, fourth, and fifth pregnancies.
I could sit here and tell you that the reason I declined those invasive tests was because of the risk of resultant miscarriage, and that would be the truth. But it would only be part of the truth. The rest of the truth is that I just never really fathomed that a baby that wasn’t . . . normal . . . would happen to me. It really wasn’t a smug thing, like I thought I lived far too charmed a life for complications to happen to me. It was more like . . . I had experienced more than my fair share (in my estimation, anyway) of bad, so what were the chances? And yeah, I guess all that birth defect business seemed so abstract to me – that was the kind of thing that happened to other people that I only heard about. Okay, so I guess I was a little arrogant.
Obviously, I know differently now. I have a son with Down syndrome, and it’s opened my eyes to a whole lotta reality, including the fact that yeah, this stuff can happen to anyone, including me. And obviously, at my age, the risks have increased pretty dramatically. For Down syndrome and probably a number of other things.
So, will I do prenatal screenings this time around? I’m thinking that no, I will not. Why in the world not?
Back to the questions I posed earlier:
1. What is the potential information to be gleaned from the screenings? Birth defects, genetic conditions, physical anomalies. Some of which could be very serious. Some of which could even be incompatible with life.
2. What potential action would I consider in light of the information I might glean from the screening? Well, obviously potential action would depend on potential diagnosis. Some diagnosed conditions might only demand careful monitoring, while some might require a choice to be made between continuing or terminating the pregnancy. And while I remain staunchly pro-choice, I am not in favor of weeding out imperfect babies. I can’t see myself ever making that choice, and to be honest, I’d just rather not be faced with such a choice. I know we have room in our family and in our hearts for another baby with Down syndrome, or whatever else, come what may. And in the event that this baby isn’t meant to be for the short or the long run? We’ll take that as it comes. I don’t feel a great need to know as soon as possible. There is something to be said for knowing for the sake of preparedness; I’d rather find out after the baby is born.
As much as possible, assuming this baby is viable and the pregnancy continues to term, I would like to fall in love with him or her as s/he grows inside me, as I have with all my other babies, as a baby, not as a frightening diagnosis. Whatever genetic conditions he or she might have, it happened at the moment of conception, and it’s already said and done now. I will have at least a couple of ultrasounds to rule out obvious anomalies which would make a home birth unsafe (yes, we are planning to have this baby at home, like Finn and Lilah were born, if at all possible), and my midwife will be monitoring me and the baby closely.
So that’s the plan.
Following is a short list of my favorite children’s books that discuss Down syndrome, diversity, and tolerance:
Hi, I’m Ben … And I’ve Got a Secret! A short, simple book aimed at young children. Told in first person by Ben, this little boy introduces himself and talks about all the things he can do, while inviting the reader to guess his secret.
We’ll Paint the Octopus Red Emma has a new baby brother, and her parents explain to her that he has Down syndrome. What does this mean for Emma? A sweet story for young siblings.
The Worst Best Brother This is a follow-up to We’ll Paint the Octopus Red. How does Isaac having Down syndrome fit into Emma’s world now that they’re both a little older?
Ruby in Her Own Time A sweet story late bloomer Ruby, the duckling who does everything late, but in the end shows everyone how magnificent she is anyway.
The Junkyard Wonders A classroom of misfits discover their value and their own inner genius.
Also, Deedah is a wonderful short documentary for children and adults alike. In it, seven-year old Charlotte, is interviewed by her mom about her younger brother Jonathan, who has Down syndrome. A fabulous little movie.
Michael and I signed Finn’s IEP yesterday morning. We have declined everything except speech therapy.
Last I wrote, we had received the Minutes from the IEP meeting, and the Minutes cast us in a very negative light. We are still dumbfounded as to why the Director found it necessary to throw so much into the Minutes that was opinion; it wasn’t merely a dispassionate documentation of the discussion. After doing some research, we learned that by signing the IEP with those Minutes attached, we would basically be agreeing to everything contained in the Minutes, including the Director’s personal opinions and characterizations of us. So we did type up a Parent Addendum, which included a lot (but not all) of what I wrote in my draft response here. That is now attached to the IEP as well, so at least both sides of the story are documented.
Anyway, Finn will begin speech therapy next week. The main reason we consented to it is because the speech therapist who worked with Daisy (on an informal basis; she had some pretty severe enunciation issues, but no IEP) in preschool has availability to take Finn on. This is not at our home school, but it is at the same school in our town where four of our kids have attended preschool and one has attended middle school. So we’re familiar with the campus and already have a positive rapport with this speech therapist.
I’ll be honest and say that I’m still not completely sold on the idea that speech therapy is going to make a big difference for Finn at this point. At the very least, however, I figure it will allow him an opportunity to get his toes wet in classroom setting, taking instruction from someone other than a family member. The speech therapist called me this morning to set up a schedule for Finn (he will go twice a week beginning next week, one individual session and one small group session, each 30 minutes long), and she remembers our family and Finn as a baby from when she worked with Daisy three years ago. She really put me at ease about the whole thing, so I’m feeling pretty good about it.
So we put the whole IEP drama to rest for the time being. In the Spring, we start the whole process over with new assessments in preparation for placing Finn in preschool in Fall 2012. For now I’m going to enjoy the reprieve.