tag:blogger.com,1999:blog-75023077375288698852024-03-14T02:16:42.147-07:00Finnian's JourneyOn July 7, 2008 Finnian, our sixth child, was born at home into loving hands. Shortly after his birth he was diagnosed with Down syndrome. This is the ongoing story of how our family is being transformed by this little boy and Down syndrome.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.comBlogger583125tag:blogger.com,1999:blog-7502307737528869885.post-15166899060050738362011-01-09T21:04:00.001-08:002011-01-09T21:12:18.149-08:00Moving OnAfter a great deal of thought and wrestling with the decision in my head, I've decided it's time to retire Finnian's Journey. This has been kind of an emotional and agonizing decision - this blog embodies so much for me: everything that my life has become with the addition of Finn to our family two and a half years ago. However, at this point Finn is just one of our kids, and Down syndrome isn't the focal point for me that it once was.<br /><br />I am going to leave Finnian's Journey up, and hopefully new parents of babies with Down syndrome will stumble across it and read parts of it and see that this journey is an incredibly enriching one.<br /><br />I've started a new blog where I will continue to write about all the things that spill forth from my mind - including, but not limited to, Finn and Down syndrome.<br /><br /><a href="http://lisamorguess.wordpress.com">Life As I Know It</a><br /><br />I am so very grateful for all the support I've gotten by way of this blog, all the incredible parents and chromosomally enhanced children I've gotten to know, and all the friendships I've gained. Thank you, everyone, from my heart of hearts.<br /><br />I hope you'll visit me at my new blog!Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com5tag:blogger.com,1999:blog-7502307737528869885.post-77524120290896559472011-01-07T23:03:00.000-08:002011-01-07T23:08:19.603-08:00The R-wordA lot of talk has been made about not tolerating the use of "retard" and "retarded" as derogatory slang. It's easy - or at least easy<span style="font-style: italic;">ish</span> - to confront someone on their use of the R-word(s) when it's a peer, someone subordinate in some way (as an adult to a child), or a stranger. But how should the situation be properly and constructively dealt with when the offender is a superior, or someone in an authority position (as a boss, for instance)?<br /><br />I'm very curious what you, my Ds blogging friends, have to say about this.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com6tag:blogger.com,1999:blog-7502307737528869885.post-39873430462424756562010-12-28T17:34:00.001-08:002010-12-28T18:01:58.708-08:00A Long Overdue Post About What Finn's Up ToBoy, life sure has a way of getting in the way of blogging, huh?<br /><br />I can sum up what Finn is up to these days in one word: TROUBLE. In a nutshell, he's into everything. And he's a very determined little guy. And I'm pretty sure he's snickering at me behind my back as he puts me through the paces.<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_NfXVuHIhOH8/TRqR-wsamII/AAAAAAAADxg/qVdbgkzbgoQ/s1600/DSC_0038.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="http://2.bp.blogspot.com/_NfXVuHIhOH8/TRqR-wsamII/AAAAAAAADxg/qVdbgkzbgoQ/s576/DSC_0038.jpg" alt="" id="BLOGGER_PHOTO_ID_5555913597724039298" border="0" /></a><br />He's figured out how to climb up on his toy chest and . . . redecorate.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_NfXVuHIhOH8/TRqR-ggiuUI/AAAAAAAADxY/DdMxMm-ZAkw/s1600/DSC_0039.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="http://1.bp.blogspot.com/_NfXVuHIhOH8/TRqR-ggiuUI/AAAAAAAADxY/DdMxMm-ZAkw/s576/DSC_0039.jpg" alt="" id="BLOGGER_PHOTO_ID_5555913593379273026" border="0" /></a><br />He climbs. Boy does he climb.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_NfXVuHIhOH8/TRqR-TzVfNI/AAAAAAAADxQ/LAr0tb4A-Qs/s1600/finn%2Bclimbing%2Bcollage.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 400px;" src="http://3.bp.blogspot.com/_NfXVuHIhOH8/TRqR-TzVfNI/AAAAAAAADxQ/LAr0tb4A-Qs/s400/finn%2Bclimbing%2Bcollage.jpg" alt="" id="BLOGGER_PHOTO_ID_5555913589968436434" border="0" /></a><br />He's figured out how to make good use of a step stool:<br /><br /><object width="640" height="385"><param name="movie" value="http://www.youtube.com/v/A7PtGmKw9KQ?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/A7PtGmKw9KQ?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="640" height="385"></embed></object><br /><br /><br />Here's some general rabble rousing:<br /><br /><object width="640" height="385"><param name="movie" value="http://www.youtube.com/v/irJo6kYDZO8?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/irJo6kYDZO8?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="640" height="385"></embed></object><br /><br /><br />Oh, and look what a smarty pants he is:<br /><br /><object width="640" height="385"><param name="movie" value="http://www.youtube.com/v/rwG92gl_yAM?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/rwG92gl_yAM?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="640" height="385"></embed></object>Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com6tag:blogger.com,1999:blog-7502307737528869885.post-20640936877604402662010-12-07T20:44:00.000-08:002010-12-07T21:03:07.516-08:00Accidental MohawkIt was an accident, I swear it was! <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_NfXVuHIhOH8/TP8P3QQe5uI/AAAAAAAADp8/sqan2aVczhU/s1600/DSC_0056.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 266px;" src="http://1.bp.blogspot.com/_NfXVuHIhOH8/TP8P3QQe5uI/AAAAAAAADp8/sqan2aVczhU/s400/DSC_0056.JPG" alt="" id="BLOGGER_PHOTO_ID_5548170707875063522" border="0" /></a><br />See, here's what happened: I put Finn in the tub and got Daddy's electric trimmer out to give Finn a trim, as usual. I'm running the trimmer up and down the back of his head and notice that he's getting bald spots. The blade guard that controls how close it trims had come off the blade and I didn't notice! So he's got all these glaring bald spots and the only thing I could do at that point was . . . well, give him a Mohawk!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_NfXVuHIhOH8/TP8PJz0C_jI/AAAAAAAADp0/REsDhgbYYrQ/s1600/DSC_0059.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 266px;" src="http://3.bp.blogspot.com/_NfXVuHIhOH8/TP8PJz0C_jI/AAAAAAAADp0/REsDhgbYYrQ/s400/DSC_0059.JPG" alt="" id="BLOGGER_PHOTO_ID_5548169927145487922" border="0" /></a><br />Daddy and all Finn's brothers and sisters are horrified. I'm actually partial to boys with Mohawks (call me strange), but this was not what I intended. No, really!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_NfXVuHIhOH8/TP8PJFPOFKI/AAAAAAAADps/CkQwclXUD1I/s1600/DSC_0071.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 266px;" src="http://4.bp.blogspot.com/_NfXVuHIhOH8/TP8PJFPOFKI/AAAAAAAADps/CkQwclXUD1I/s400/DSC_0071.JPG" alt="" id="BLOGGER_PHOTO_ID_5548169914642994338" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_NfXVuHIhOH8/TP8PIkvWTcI/AAAAAAAADpk/sI34KDBWRKI/s1600/DSC_0081.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 266px;" src="http://2.bp.blogspot.com/_NfXVuHIhOH8/TP8PIkvWTcI/AAAAAAAADpk/sI34KDBWRKI/s400/DSC_0081.JPG" alt="" id="BLOGGER_PHOTO_ID_5548169905919380930" border="0" /></a><br />Hmmm, maybe it's time to get this bad boy a tattoo.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com12tag:blogger.com,1999:blog-7502307737528869885.post-88447678176019650522010-11-30T13:06:00.000-08:002010-11-30T13:20:05.521-08:00DoneWe had our final OT session this morning. Emily asked if we wanted to extend services for a month, and I declined. With the holidays coming up and all, I'd really rather have our calendar freed up, and I don't see the benefit to Finn to have one more month of OT.<br /><br />So we're done - done with early intervention. No more therapy. I am honestly relieved. All the therapists Finn has had have been committed to their professions and passionate about what they do, but I still can't attribute a single gain Finn has made to therapy. (And in all honesty, I'm left scratching my head, wondering how true believers in therapy quantify the benefits of it. I know there are those parents out there who assume that we've just had a bad all-around experience with early intervention - which is true to some degree - and that I'd feel differently about it if only we could get better therapists.) I won't go so far as to say it's all been a complete waste of time; some things you just don't know until you go down the path, and in order to discover that therapy was not the end-all be-all for us, we had to go down the path of early intervention. Do I wish I had trusted myself as a parent a little more? Or that I had had more faith in Finn to progress along his own path? Yes. And I'm sure there will be times in the future, as we fly solo, so to speak, when I will second-guess myself. But I also know that is the nature of parenting - parenting any child.<br /><br />I am looking forward to a schedule free from therapy appointments, days when we can instead go for long walks, go to the park, and just <span style="font-style: italic;">be</span>.<br /><br />I assume our Service Coordinator will be closing Finn's file. I don't know what that will mean with regard to transitioning him to the school district when he turns three next summer. I have no idea at this point if I even care. Maybe we'll take another year to just <span style="font-style: italic;">be</span>. Who knows?Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com5tag:blogger.com,1999:blog-7502307737528869885.post-18820569096383798332010-11-27T16:30:00.000-08:002010-11-27T16:54:43.593-08:00Behavior and DisciplineI yelled at Finn, I think for the first time, yesterday. I was loading dirty dishes into the dishwasher and he grabbed a handful of dirty silverware and flung it on the floor, and I responded with "Damnit, Finn!" And he cried. And I felt pretty crappy.<br /><br />This is one of his favorite pastimes, grabbing what he can from the dishwasher as soon as the opportunity presents itself. I try to keep him out of the kitchen using a baby gate when I'm doing dishes, but sometimes I forget the gate, or I think I can load the dishwasher really quick while he's otherwise occupied, but there's no fooling him. <br /><br />Some of his other favorite things to do are:<br /><br />- lamp tipping<br />-repetitive toilet flushing<br />- swiping his sisters' shoes from their closet and tossing them over the baby gate into the kitchen for the dog to chew (I am convinced that the two of them are in cahoots)<br />- emptying drawers and cabinets<br />- emptying the recycling bin in the kitchen<br />-flinging books from book shelves<br /><br />I am aware, from previous child rearing experience, that these are all normal behaviors for toddlers to engage in. What I am having trouble with is enforcing limits and boundaries with Finn - teaching him what is allowed and what is not.<br /><br />The hard part is the fact that deep down inside, I really don't know how much he <span style="font-style: italic;">gets</span>. I'm pretty certain that he understands "no" and when I say "no" to him in a firm voice, he will look at me and stop what he's doing. But he's usually back at it within a minute or two. And what I don't know is: does he not <span style="font-style: italic;">get it</span> (or only get it momentarily)? or is he just being stubborn?<br /><br />This is one area in which his lack of communication skills is a definite hindrance. He can't talk to me, and I don't know how much of what I say to him he actually understands. It seems pointless to sit and attempt to reason with him. I do redirect him when he's doing something he shouldn't be doing, but so far that doesn't seem to make a huge difference. I think he's too young - at least developmentally - to try time-outs on, or, really, any sort of consequence.<br /><br />The fact is, he seems like a much younger baby to me than his actual age. On some level, I've begun to think that this is one way in which those evaluations might be somewhat helpful - if I know he's cognitively at a 12- or 15-month level, it would seem appropriate, then, to deal with his behavior issues as I would a typical 12- or 15-month old (and I'm only guessing; I don't know where he falls cognitively, as it's been a while since he was evaluated), and not his actual age, which is almost two and a half.<br /><br />On the other hand, I can definitely see how easy it is, because he's clearly behaviorally and developmentally at a much younger level than his actual age, to coddle him and baby him, and in the long run, I'm not sure how helpful or harmful that might be.<br /><br />I wanted to post about this, initially thinking I might get some advice from parents out there who have been there. But now that I think about it, I guess I know that there is no magic answer. I'm sure teaching Finn boundaries will be very much like teaching my other kids boundaries, it will just require a lot more patience.<br /><br />Sigh.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com5tag:blogger.com,1999:blog-7502307737528869885.post-42570382219895910282010-11-17T21:23:00.000-08:002010-11-17T21:45:30.468-08:00Monkey See, Monkey DoScore another developmental jump for Finn: he's now engaging in pretend play and imitation.<br /><br />Yesterday he toddled into our room, grabbed the remote from the shelf below the TV, held it up to his ear and started walking around talking on the "phone." I was truly floored; I rarely talk on the phone (with six kids? It's pretty near impossible), so it's unlikely that he's copying me. More likely his older brother, Kevin, who is on the phone quite a bit. In any case, he's copying someone, and I was flabbergasted that he made that connection - that he found something that resembled a phone, and did with it exactly what a person does with a phone.<br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/5vZy-40hLhk?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/5vZy-40hLhk?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br /><br />Now it seems to be his new thing, wandering around the house chatting away on the "phone." I love it!<br /><br />Then tonight after dinner, as we were clearing the table and doing dishes, Finn went into the kitchen drawer where the dishtowels are kept, pulled one out, and began wiping down the cupboards - and then he tried to hang the towel on the oven handle where I usually hang a towel!<br /><br />Seriously, this kid never ceases to amaze me.<br /><br />Other things he's started doing are "reading" books and taking his sisters' purses and hanging them on his shoulder. Like, he really <span style="font-style: italic;">gets</span> it. I can almost see the wheels turning in his little head.<br /><br />I know that when I learned that I had a child with a developmental disability - a child who is clinically deemed <span style="font-style: italic;">mentally retarded</span> - it devastated me and scared me so much. What did it mean? What would it mean as he grew up? Would it mean that he would never be able to learn, to experience life? And I see all the time that that's not what it means at all. He's soaking it all up like a little sponge.<br /><br />Not to overestimate all this, but I know that this type of play is developmentally significant. And it makes me feel like he is going to be just fine.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com6tag:blogger.com,1999:blog-7502307737528869885.post-39334475546157145752010-11-03T15:49:00.000-07:002010-11-03T15:52:23.702-07:00Wordless Wednesday<object width="640" height="385"><param name="movie" value="http://www.youtube.com/v/Oz1iLG-8lzs?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/Oz1iLG-8lzs?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="640" height="385"></embed></object>Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com5tag:blogger.com,1999:blog-7502307737528869885.post-48307860696381665842010-10-31T21:06:00.001-07:002010-10-31T21:49:06.213-07:00There's a New Sheriff in Town . . .. . . and I reckon he ain't gonna take no guff.<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_NfXVuHIhOH8/TM5GdjeLIeI/AAAAAAAADmQ/dSC-8ReoBLw/s1600/DSC_0021.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 266px;" src="http://2.bp.blogspot.com/_NfXVuHIhOH8/TM5GdjeLIeI/AAAAAAAADmQ/dSC-8ReoBLw/s400/DSC_0021.JPG" alt="" id="BLOGGER_PHOTO_ID_5534438465636868578" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_NfXVuHIhOH8/TM5GdB18rQI/AAAAAAAADmI/dOFwuyOQUxc/s1600/DSC_0027.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 266px;" src="http://1.bp.blogspot.com/_NfXVuHIhOH8/TM5GdB18rQI/AAAAAAAADmI/dOFwuyOQUxc/s400/DSC_0027.JPG" alt="" id="BLOGGER_PHOTO_ID_5534438456609778946" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_NfXVuHIhOH8/TM499Ug7siI/AAAAAAAADmA/cK2M8sn_uWA/s1600/DSC_0048.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 266px; height: 400px;" src="http://1.bp.blogspot.com/_NfXVuHIhOH8/TM499Ug7siI/AAAAAAAADmA/cK2M8sn_uWA/s400/DSC_0048.jpg" alt="" id="BLOGGER_PHOTO_ID_5534429115773071906" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_NfXVuHIhOH8/TM499EprjJI/AAAAAAAADl4/_BArdD9Eom4/s1600/DSC_0054.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 266px; height: 400px;" src="http://4.bp.blogspot.com/_NfXVuHIhOH8/TM499EprjJI/AAAAAAAADl4/_BArdD9Eom4/s400/DSC_0054.jpg" alt="" id="BLOGGER_PHOTO_ID_5534429111514795154" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_NfXVuHIhOH8/TM498vGTznI/AAAAAAAADlw/E3lRtbG4A2Y/s1600/DSC_0057.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 276px; height: 400px;" src="http://2.bp.blogspot.com/_NfXVuHIhOH8/TM498vGTznI/AAAAAAAADlw/E3lRtbG4A2Y/s400/DSC_0057.jpg" alt="" id="BLOGGER_PHOTO_ID_5534429105729293938" border="0" /></a><br />Happy Halloween, pardner.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com4tag:blogger.com,1999:blog-7502307737528869885.post-27239159515857493162010-10-30T13:39:00.000-07:002010-10-30T14:15:01.623-07:00Down Syndrome Awareness Month: Real Life With a Child With Down SyndromeAs Down Syndrome Awareness Month wraps up, I'd like to share some with final thoughts.<br /><br />A little over two years ago, my son was born with Down syndrome. In the early days and weeks, I was overcome with grief and fear, and even anger. I had already paid my dues in life; what did I do to deserve having a child with a lifelong diagnosis? It felt like a life sentence, and when I thought of the irreversibility of it, the permanence of it, I at times felt like I was physically suffocating.<br /><br />I and my family have traveled quite a long way over the last couple of years with Finn. In time, the grief and anger evaporated. Sometimes the fear is still there, but I experience moments of fear concerning each of my children when I try to guess at what the future might hold. For the most part, we live in the here and now. We take it as it comes, and so far, it's been a wonderful journey. I've made my peace with my son having Down syndrome, with his being <span style="font-style: italic;">different</span>. I adore every inch of him, his body, his heart, and his mind, and I wouldn't change him if I could.<br /><br />It's changed me, having Finn. It's made my heart more tender towards those who are different, and harder towards those who are cruel or callous or unaccepting of those who are different. It's made me more aware that we all have our trials, that there's always somebody who has it worse, and that I and my family are incredibly fortunate and have a trillion things to be grateful for, Finn being one of those. <br /><br />Being an advocate in the world of Down syndrome is tricky business. There are two categories of people to whom we are advocating, or trying to raise awareness: the general population whom we want to see that our children are people just like anyone else, deserving of respect and kindness, and those who might actually find themselves in the position of facing a diagnosis of Down syndrome for their own child. What's tricky is that as an advocate, I want to be honest and forthright - I want to show the world at large that my son is wonderful, and that having a child like him in our midst has turned out to be quite a blessing, while being honest to expectant and new parents that yes, it is scary and shocking in the beginning, but those feelings dissipate, and yes, your child will be <span style="font-style: italic;">different</span>, but different can be beautiful if you allow yourself to see the beauty of different, and yes, there will be unique challenges and frustrations to face when raising a child with Down syndrome, but the truth is, no child, extra chromosomes or not, comes with guarantees or without challenges and frustrations.<br /><br />What I want people to know most is that this is not a consolation prize. This is not our family just making the best of a bad situation. We do not exist under a cloud of sorrow, and we do not dwell on the fact that our son has Down syndrome. Finn just is who he is, and we're pretty much like any other family (albeit a slightly larger one than average!). This is just life, and it's pretty great.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com4tag:blogger.com,1999:blog-7502307737528869885.post-69346305298074256012010-10-29T10:24:00.000-07:002010-10-29T10:44:31.446-07:00AnticlimaxAnd with that, we're done with speech therapy.<br /><br />Finn has been receiving in-home speech therapy once a week since mid-July - so three and a half months. During that time, no fewer than four sessions were skipped: once because Finn had a cardiology appointment, once because the SLP was on vacation, once because she was sick, and once because . . . well, she just never showed up. In that three and a half months, she was on time maybe three times. All the other times, she was anywhere from ten to twenty-five minutes late, and last week, she showed up fifteen minutes early (which is just as inconvenient and annoying as being late). She often brought along a student/assistant who sat here looking extremely bored each time she was here, fidgeting, sitting with her chin resting on her fist, only interacting with Finn at the SLP's specific direction, and just generally giving the impression that she was just putting in her time.<br /><br />Here's what speech therapy consisted of for us: playing with toys. A variety of toys that the SLP would bring. Nothing special, though, just toys. Musical toys are a big hit with Finn, so lots of musical toys. Singing songs and doing animated hand movements with the songs.<br /><br />That's it.<br /><br />No oral-motor exercises of any kind. And honestly, I'm really not convinced that he'd even be receptive to oral-motor exercises at this point, so my saying this is not a complaint, just an observation.<br /><br />My point is that nothing - absolutely nothing - happened during three and a half months of speech therapy that we don't already do with Finn.<br /><br />On the list of positives, the SLP had a really good rapport with Finn. He liked her a lot, and would often crawl into her lap and give her his famous great big hugs.<br /><br />He is most definitely using more signs now than he was three and a half months ago, and more spoken words (though they are difficult to understand, and I doubt anyone outside of his immediate family would understand the words he says), but I think it's just the natural progression for Finn. He'd be exactly where he is now without the speech therapy.<br /><br />So I'm disappointed, not because it didn't yield more results, but because I just don't know what the point was. This SLP is supposedly THE BEST. She's very reputable and well known in the community among parents who have children with speech and language delays. I'm not sure, at this point, exactly what criteria makes a SLP good at what they do.<br /><br />Anyway, we're done now. Her contract with us is up as of today, so this morning was our last session (she showed up twenty-five minutes late, and with her bored assistant). When we said goodbye, that was it - no ceremony or emotion. Not that I expected any.<br /><br />Sigh.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com7tag:blogger.com,1999:blog-7502307737528869885.post-89721291906084675682010-10-24T20:16:00.000-07:002010-10-25T14:02:47.467-07:00Down Syndrome Awareness Month: Early Intervention/TherapyI've been struggling to write this post for a couple of days now, writing it and rewriting it, abandoning it and then restarting. Although this is an important topic that I think warrants discussion during Down Syndrome Awareness Month, I seem to be having trouble finding the right words, and I don't want this to come off as a rant against Early Intervention and therapy.<br /><br />The truth is, though, that I'm not a fan of Early Intervention or therapy - at least not for babies . . . at least not for babies with Down syndrome . . . at least not for <span style="font-style: italic;">my</span> baby with Down syndrome.<br /><br />Early Intervention is something I've spent much time agonizing over during the two+ years of Finn's life thus far. Is Early Intervention really necessary? Is it even actually beneficial in any real, tangible way? What about the downside? Do the supposed benefits outweigh the inconvenience and intrusion on our family? Does it foster a perspective of Finn being "defective" in some way?<br /><br />When we learned that our baby had Down syndrome, the first "line of defense" offered to us - when he was a mere few days old - was the therapies and services available through the State, collectively known as Early Intervention. I remember that, in my sleep-deprived, shell-shocked, grieving state, I was taken aback by the social worker who sat in a chair across from me in Finn's little room in the NICU, telling me that Finn would need to go to "baby school." "As a newborn?" I asked. "Well, you want him to be the best he can be, don't you? Of course you do. Then yes, this is what you will need to do for him," she told me very matter-of-factly.<br /><br />And so it goes for most new parents of a baby diagnosed with Down syndrome. The weakest spot in any parent's armor is a place where fears and hopes reside, and where guilt can magnify those fears and hopes. Add in a diagnosis, and the weak spots are even further compromised. What does it all mean? Will therapy make him more "normal"? Will lots of hard work help him overcome his disability? Can we manipulate him to be minimally impacted by his diagnosis? Should we try to?<br /><br />So within a short time after Finn was released from the NICU and came home with us, there began a parade of social workers and therapists who came out to our house to examine and evaluate Finn and construct his first IFSP (Individual Family Service Plan) which contained developmental goals for him to strive for, and a plan of action to achieve those goals.<br /><br />Over the two+ years of Finn's life, we have undertaken PT (physical therapy) for the first year and a half to address gross motor skill delays, OT (occupational therapy) for the past eight months to address feeding issues and fine motor skill delays, and ST (speech therapy) for the past three months to address speech delays. Has any of it made a difference? No, I do not believe so. Having had five babies before Finn, I clearly see that Finn, just like all his siblings before him, continues to progress, master skills, and reach milestones on his own time line. I cannot attribute a single gain he has made directly to therapy.<br /><br />I know this is a controversial and, frankly, unpopular position. There are a lot of families out there who are firm believers in therapy, and the more the better; families who believe that early intervention services is going to make a huge long-term difference in their child's skills and abilities, and that they should fight for every service available because their child is entitled to them. I'm just not one of those parents. I've watched my other kids master skills and develop their own strengths and talents in their own time, and Finn is no different - his time line is just a little different, that's all.<br /><br />And yet, even having had five babies before Finn, and seeing them all do things a little differently (one walked at 12 months, and another not until 16 months; some talked earlier than others, some potty trained earlier than others, some became voracious readers at age 5, and some didn't; I could go on - seriously, watching my kids is like watching a live science experiment), I still got sucked into the whole Early Intervention mindset when Finn was a newborn.<br /><br />If I had it to do over again, knowing what I know now, I would opt out of Early Intervention altogether. I wish I hadn't expended so much energy agonizing over it - will it help him? am I cheating him by not having him in <span style="font-style: italic;">more</span> therapy? or is this all just a waste of time? I wish I hadn't expended so much energy being resentful of demeaning and dehumanizing evaluations, of therapists who can't be on time, of the intrusion on our life as a family. I wish I had had utter faith that Finn would do his thing in his own time.<br /><br />Hindsight is 20/20.<br /><br />I've become a big believer in <span style="font-style: italic;">life as therapy</span>. I think Finn's best therapists are his family members - the people who spend every day with him, who love him and shower him with affection, who act as role models for him, who encourage him by <span style="font-style: italic;">including</span> him - not the Early Intervention therapists who spend an hour a week with him.<br /><br />I also believe that I can serve Finnian best by being a loving parent to him and <span style="font-style: italic;">not</span> a therapist. I don't think every interaction with him should be therapeutic or designed to encourage some skill. What a drag for him that would be, to constantly be in "student" mode. But this is another pressure a lot of us parents seem to feel - that we constantly have to be interacting with our children with Down syndrome in a productive, educational, and therapeutic manner.<br /><br />I think it's possible that Finn will benefit more from interventive services when he's older. Just like trying to teach a a person how to drive a car or do calculus is far more productive when they're sixteen rather than five, I think the same can be said for Early Intervention; they probably get a lot more out of it when they're older, when their brains and bodies have matured enough to absorb it all.<br /><br />Along with this, I think it's imperative to <span style="font-style: italic;">respect their limitations</span>. A child with Down syndrome is never going to have the same global abilities and skill levels as a "typical" child. That's just a fact. And it's a bitter pill to swallow when you've been given the shocking news that the baby you have is not the baby you thought you were going to have. But if we, as parents, can make peace with that - that, yes, "more alike than different," but still different, and different is okay, I think we could save ourselves a lot of heartbreak and angst. I truly think that in this way, Early Intervention is destructive - it fosters a mindset that our children are broken and can be fixed, that life is more valuable the more one is able to achieve. I don't want Finn to grow up feeling that we see him in that way, and I don't want my other kids to see Finn that way.<br /><br />That is not to say that skills and abilities should not be encouraged, or that we should just let our children languish. I just think that children with Down syndrome - at least babies with Down syndrome - learn the same way their typical peers do: by being allowed to be inquisitive, by being allowed to explore, by being loved and played with and stimulated with talk, song, hugs, and play.<br /><br />We quit physical therapy almost a year ago, and I've never looked back. Finn has continued to master gross motor skills in his own time, most recently by taking his first independent steps and within a couple of weeks becoming an almost full-time walker. Pretty soon we will be opting out of OT and ST, thanks to new regulations here in California which require families to procure services through their health insurance carriers before the State will cover them. Our health insurance carrier has approved coverage for services for Finn, but practically speaking, what they're offering us is too inconvenient to be feasible for our family. I am actually relieved. I finally have an out - we can quit Early Intervention and I don't have to feel bad about it.<br /><br />I don't know what will happen next summer when Finn turns three and ages out of Early Intervention and becomes the responsibility of our school district. I'm not so sure that I'm going to jump to send him to preschool when he's three. I'll cross that bridge when I get to it, but what I do know for certain now is that I'm not a fan of going along with what is prescribed if I don't actually feel it's in the best interests of my child and my family, taking into consideration our unique circumstances, needs, and goals.<br /><br />So if I had the opportunity to speak to new parents of babies with Down syndrome about Early Intervention, I'd tell them this: consider your options. Consider putting off therapy for six months or a year, and just spending that time falling more and more in love with your baby. Consider minimizing therapy and only doing it once a month. Consider refusing any services that don't meet your family's needs (like services that require you to drive across town, or services with time slots available only during what is your child's nap time). Consider opting out altogether. <br /><br />There is something to be said for just <span style="font-style: italic;">being</span>.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com12tag:blogger.com,1999:blog-7502307737528869885.post-72584976423171603512010-10-21T21:14:00.000-07:002010-10-21T21:29:22.103-07:00Finnian And the Case of the Disappearing Sandwich<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_NfXVuHIhOH8/TMERBLvLQLI/AAAAAAAADlo/Mg1tOM8aySk/s1600/IMG_0095.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 299px; height: 400px;" src="http://3.bp.blogspot.com/_NfXVuHIhOH8/TMERBLvLQLI/AAAAAAAADlo/Mg1tOM8aySk/s400/IMG_0095.jpg" alt="" id="BLOGGER_PHOTO_ID_5530720529415880882" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_NfXVuHIhOH8/TMERATp3dMI/AAAAAAAADlg/POuh4DuteOw/s1600/IMG_0097.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 299px; height: 400px;" src="http://4.bp.blogspot.com/_NfXVuHIhOH8/TMERATp3dMI/AAAAAAAADlg/POuh4DuteOw/s400/IMG_0097.jpg" alt="" id="BLOGGER_PHOTO_ID_5530720514361226434" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_NfXVuHIhOH8/TMEQcUXTZwI/AAAAAAAADlY/9AkVdkN7FKM/s1600/IMG_0098.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 299px; height: 400px;" src="http://4.bp.blogspot.com/_NfXVuHIhOH8/TMEQcUXTZwI/AAAAAAAADlY/9AkVdkN7FKM/s400/IMG_0098.jpg" alt="" id="BLOGGER_PHOTO_ID_5530719896076510978" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_NfXVuHIhOH8/TMEQcDwYSPI/AAAAAAAADlQ/KNCv-ql8YIM/s1600/IMG_0100.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 299px; height: 400px;" src="http://4.bp.blogspot.com/_NfXVuHIhOH8/TMEQcDwYSPI/AAAAAAAADlQ/KNCv-ql8YIM/s400/IMG_0100.jpg" alt="" id="BLOGGER_PHOTO_ID_5530719891618285810" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_NfXVuHIhOH8/TMEQbuQau7I/AAAAAAAADlI/mN78wWdi9-s/s1600/IMG_0105.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 299px; height: 400px;" src="http://4.bp.blogspot.com/_NfXVuHIhOH8/TMEQbuQau7I/AAAAAAAADlI/mN78wWdi9-s/s400/IMG_0105.jpg" alt="" id="BLOGGER_PHOTO_ID_5530719885847083954" border="0" /></a><br />This was Finn's lunch today. A sandwich. Peanut butter and honey on whole wheat bread.<br /><br />He has come so far with eating. It doesn't seem all that long ago that I was crying over <a href="http://finniansjourney.blogspot.com/2010/04/how-avocado-did-me-in.html">avocados</a> (okay, so it was six months ago), feeling pretty hopeless about his feeding issues and wondering if he'd ever eat table food. He eats pretty much everything now. He even swiped a slice of pepperoni pizza off the table when my back was turned last week, and he ate the whole thing.<br /><br />Our cupboards are not bare of baby food just yet. I still resort to it when I need to get him fed quickly, because the truth is, it took him a solid half hour to eat that sandwich. But he ate it. All by himself.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com4tag:blogger.com,1999:blog-7502307737528869885.post-60645268387649773832010-10-20T14:24:00.001-07:002010-10-20T14:44:57.373-07:00Finn's First ShoesNow that Finn is walking more and more, I figured it was finally time to get him his first pair of shoes. I wasn't sure how he would react to having something on his feet, as he's never worn shoes before (I've put shoes off with all my kids until they were walking), and I've never been able to keep socks on him. So he's been a barefoot boy for over two years now.<br /><br />I was a little torn on what to go with for him. Do we put him in some kind of "special" shoe? He doesn't wear orthotics, and, though I'm not an expert, I haven't noticed anything indicating that he needs orthotics. So "special" shoes (whatever those might be) seem kind of unnecessary. I decided to start with <a href="http://www.pediped.com/home/home.aspx">Pedipeds.</a> These were the first shoes Lilah wore, and I loved them. They're all-leather, soft-soled (but durable enough for outside), and lightweight - in other words, not too cumbersome or restricting. Plus, they're super cute, and when you're a cool little dude like Finn, you gotta have the stylin' kicks.<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_NfXVuHIhOH8/TL9gaJom9eI/AAAAAAAADko/j0DAQHhwUkI/s1600/DSC_0003.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 266px;" src="http://4.bp.blogspot.com/_NfXVuHIhOH8/TL9gaJom9eI/AAAAAAAADko/j0DAQHhwUkI/s400/DSC_0003.JPG" alt="" id="BLOGGER_PHOTO_ID_5530244869813368290" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_NfXVuHIhOH8/TL9gZsc-xnI/AAAAAAAADkg/vZgYFcwoW3U/s1600/DSC_0006.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 266px; height: 400px;" src="http://2.bp.blogspot.com/_NfXVuHIhOH8/TL9gZsc-xnI/AAAAAAAADkg/vZgYFcwoW3U/s400/DSC_0006.jpg" alt="" id="BLOGGER_PHOTO_ID_5530244861979969138" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_NfXVuHIhOH8/TL9fPscTpPI/AAAAAAAADkY/f88mPeb4380/s1600/DSC_0007.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 266px; height: 400px;" src="http://3.bp.blogspot.com/_NfXVuHIhOH8/TL9fPscTpPI/AAAAAAAADkY/f88mPeb4380/s400/DSC_0007.jpg" alt="" id="BLOGGER_PHOTO_ID_5530243590666822898" border="0" /></a><br />But alas, he figured out very quickly how to take them off. So we'll see. I sure do like these shoes. But I think I'll try some Converse sneakers that tie next.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_NfXVuHIhOH8/TL9fOtrV1jI/AAAAAAAADkQ/5rm6I7RwLbo/s1600/DSC_0011.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 266px; height: 400px;" src="http://1.bp.blogspot.com/_NfXVuHIhOH8/TL9fOtrV1jI/AAAAAAAADkQ/5rm6I7RwLbo/s400/DSC_0011.jpg" alt="" id="BLOGGER_PHOTO_ID_5530243573818447410" border="0" /></a>Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com7tag:blogger.com,1999:blog-7502307737528869885.post-41683144878877800752010-10-17T13:37:00.000-07:002010-10-17T14:48:22.153-07:00Down Syndrome Awareness Month: Siblings<span style="font-weight: bold; color: rgb(153, 0, 0);">Down syndrome</span><span style="color: rgb(153, 0, 0);"> </span><span style="font-style: italic; color: rgb(153, 0, 0);">n.</span><span style="color: rgb(153, 0, 0);"> congenital disease marked by mental deficiency</span><br /><br /><span style="color: rgb(153, 0, 0);">Really, Webster? A </span><span style="font-style: italic; color: rgb(153, 0, 0);">disease</span><span style="color: rgb(153, 0, 0);">? Come on, seriously? My brother is not diseased. He's a healthy kid who happens to have Down syndrome. He walks and gives hugs and knows his own bedtime routine. Which is more than we can say for you, Webster. All you do is give misleading definitions. Ha.</span><br /><br /><span style="color: rgb(153, 0, 0);">My brother's name is Finn, and I love him to death. He has blond hair, blue eyes, a great smile, and likes to dance to the Rolling Stones. And if you look closely, yes, he has Down syndrome. So . . . what's the big deal? One extra chromosome in each cell, right? I mean, the more, the merrier! But sadly, lots of people don't seem to agree with me. Why? Is it the eyes? Do you not like the way they slant? Sorry, can't help you with that one. Could it be the way his tongue sometimes sticks out? Well, I'm sure that at some point in your life you did the same thing. No? Oh, I got it this time. It's because he's </span><span style="font-style: italic; color: rgb(153, 0, 0);">different</span><span style="color: rgb(153, 0, 0);">. Well, here's a newsflash - </span><span style="font-style: italic; color: rgb(153, 0, 0);">we're all different anyway!!!</span><br /><br /><span style="color: rgb(153, 0, 0);">I love having Finn for a brother. Having him in my life has taught me so much. I've learned lessons so much more important than whatever I've learned in math or language arts (sorry, guys). Lessons about respect and equality. In all the ways that count, however small, Finn has made the world a better place. At least my world. If not for him, I:</span><br /><br /><span style="color: rgb(153, 0, 0);">- would not have made a speech in front of my school about the r-word</span><br /><span style="color: rgb(153, 0, 0);">- would never have understood disabilities</span><br /><span style="color: rgb(153, 0, 0);">- would have had less respect for those with disabilities</span><br /><span style="color: rgb(153, 0, 0);">- would not have a problem with the r-word</span><br /><br /><span style="color: rgb(153, 0, 0);">And if not for the speech I gave at school, I would not have taught others about the r-word, and that's only, what, a couple hundred people unaware of the discrimination? Unfortunately, some were left unaffected, though, because the word "retard" is still thrown around at my school (sometimes)! I mean, man. Some people just don't get it! But some people do.</span><br /><br /><span style="color: rgb(153, 0, 0);">Well, that's it. I love Finn, and he's one of the biggest parts of my life. After you get past the whole Down syndrome thing, he's just a human being. Just like me. Just like you.</span><br /><br /><br /><div style="text-align: center;"><span style="font-size:180%;"><span style="font-weight: bold;">***</span></span></div><p></p><p class="MsoNormal"><span style=";font-size:100%;color:black;" >As you can see, Kevin is very protective of his brother. The oldest of our kids, Kevin definitely has a better grasp than the other kids do of what Down syndrome is, what its implications are, and he is more aware of the ways in which Finn is <span style="font-style: italic;">different</span> - different from the siblings that came before him, and different from other kids his age.</span></p><p class="MsoNormal"><span style=";font-size:100%;color:black;" >Our other kids don't really have a deep understanding of what Down syndrome is. Joey (age 8) and the twins, Annabelle and Daisy (age 6) know that Finn has something called Down syndrome, and we've told them in the simplest terms, appropriate for their ages and level of understanding, that there are a lot of people who have Down syndrome, that they're all different, and that, as far as we can tell right now, what it means for Finn is that maybe he looks a little different, and it takes him a little longer to learn how to do stuff. They're cool with it. Really, it's just so abstract to the younger kids at this point. Lilah (age 4) - who is very, very attached to Finn - I don't even think she knows that he has something called Down syndrome. She wasn't even two yet when he was born, and it seemed pointless to try to explain it to her back then, and it hasn't come up for her yet.<br /></span></p><p class="MsoNormal"><span style=";font-size:100%;color:black;" >All the kids really adore Finn. They dote on him. I don't want to say, though, that they adore him any more than they've adored or doted on any of the other babies that have come into our family; I don't believe they love him any more or differently because he has Down syndrome. It's just that, yeah, he's kind of staying a baby for a little longer, so he's enjoying the kind of attention from his siblings that they've showered on each baby, just longer.</span></p><p class="MsoNormal"><span style=";font-size:100%;color:black;" >I think one of the prevailing misconceptions out there in the general public is that having a child with Down syndrome will negatively impact the other children in the family. It's just not true. My kids don't see Finn as a drag. Finn definitely has the role of The Baby in the family, but he fits right in. They shower him with affection, they include him in their play, and yes, sometimes they get mad at him if he gets into something of theirs. I think the biggest negative impact I've seen on my other kids is Finn's therapy and how intrusive that can be on our routine and family time - but I'm not a big proponent of early intervention, so that is most likely my own feelings that don't even register with the kids. The fact that Finn has Down syndrome does not in any way affect the things we do as a family, or the other kids' ability to do the things they want to do. We do the things most other families do: we go to the park, we go for walks, we go out to dinner, we go shopping, we play games, we have picnics, we have dance parties in the living room. We took a family vacation this past summer. The kids play Little League, they are enrolled in music lessons and dance classes. Having Finn hasn't taken away from any of that.<br /></span></p><p class="MsoNormal"><span style=";font-size:100%;color:black;" >One day, a long time from now, it's true that Finn's siblings might be required to step up and take on some role of responsibility for Finn. I guess that can be looked at as a possible burden. I'd like to think, though, that my kids will have compassion so ingrained in them that they won't see it as a burden. It would be nice to think that in any family, even so-called typical families, the kids grow up to be loving, compassionate adults who would help their siblings out if the need arose. Because the fact of the matter is, even families without Down syndrome have trials and hardships. Shit happens. And none of knows what tomorrow will bring.</span></p><p class="MsoNormal"><span style=";font-size:12pt;color:black;" ><span style="font-size:100%;">I don't believe that Finn landed in our family at the hands of some divine force for the purpose of teaching us anything. But I do believe that as a natural consequence of having Finn in our family, each of us in our family is learning some very valuable life lessons - and the kids, who are naturally so much more open to these lessons, are soaking it up. Compassion, tolerance, and kindness to </span><span style="font-style: italic;font-size:100%;" >all</span><span style="font-size:100%;"> people. My kids are growing up knowing that </span><span style="font-style: italic;font-size:100%;" >different</span><span style="font-size:100%;"> isn't a big deal, and that we're all different in our own way anyway. They are growing up with an absence of prejudice, and absence of fear of those who are different from them. They are growing up with the belief that </span><span style="font-style: italic;font-size:100%;" >everyone</span><span style="font-size:100%;"> deserves kindness and respect, and that the world has room for everyone, no matter what their abilities, skin color, or beliefs are. They are growing up knowing that they are no better or worse than anyone else. They are learning about devotion to those they love. They already understand that every human being has value.</span><br /></span></p> <!--EndFragment-->Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com1tag:blogger.com,1999:blog-7502307737528869885.post-50582364658288826112010-10-15T08:56:00.000-07:002010-10-15T11:17:31.962-07:00Monica & DavidIf you haven't been privy to all the buzz, a film aired on HBO last night titled <span style="font-style: italic;">Monica & David</span>. It's a documentary, filmed by the cousin of the Monica in the title, showing a glimpse into the lives of two adults who have Down syndrome. Monica and David, the film's subjects, met at their adult life skills program, fell in love, and got married. The documentary shows the wedding, and a window into their life together for the year after their wedding.<br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/Su78LXwMJtY?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/Su78LXwMJtY?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br /><br />I'll just say right off the bat that I did not find this film uplifting. Which is not a bad thing, just a fact. It's a film that makes you <span style="font-style: italic;">think</span>. It makes one ponder the realities of life as an <span style="font-weight: bold; font-style: italic;">adult</span> with Down syndrome, and the realities of their families. I was crying at the end . . . but not for the same reasons I cried when I watched <a href="http://www.deedahandme.com/"><span style="font-style: italic;">Deedah</span></a>. I find myself in a funk this morning, turning the film over and over in my head.<br /><br />Most of the parents I've gotten to know through the Down syndrome blogging community are, like I, mired in life with a <span style="font-style: italic;">baby</span> or <span style="font-style: italic;">child</span> with Down syndrome. We are still striving, working towards something, full of hope and fantasy and idealism about the future. It is next to impossible for me to visualize Finn beyond babyhood/young childhood. That is not because he has Ds, it's just how it's been with all of my kids - I just can't fathom them very far beyond where they are now. Each step in the progression of life brings a new reality concerning all my children; ten years ago I would not have been able to imagine Kevin as a teenager, and yet, here he is today, a bona fide teenager. I can't really picture him as a man, but one day he will be just that, as will Finn.<br /><br />In <span style="font-style: italic;">Monica & David</span>, they've arrived. They <span style="font-style: italic;">are</span> the adults that our kids will one day be. Not that our kids will be exactly like the two individuals featured in the film, but probably something somewhat close to that. Like all people, typical and atypical, they will continue to progress in their abilities and knowledge, but the progress will be measured in much smaller increments. For all intents and purposes, they are where they will remain.<br /><br />So what I found about the film is that it's a very honest look at the lives of adults with Down syndrome. It was not a film meant to sugar-coat, and it doesn't sugar-coat. If you see the trailer or read a blurb anywhere summarizing the film, you might be led to think, "Oh, wonderful! Two adults with Down syndrome getting married and carving out a life together for themselves." But that would not be a completely true synopsis. Yes, these two individuals with Down syndrome fall in love and get married. And the love and affection and devotion between them is incredibly inspiring and moving, it really is. But what you also get to see is that they dream of having children just like a lot of other married couples - yet they can't, and they don't even know it. What you see is that neither of them seems to have a good grasp of what Down syndrome is, or that they have it. What you see is that yes, they are married, but they live with her parents and are almost completely dependent on them.<br /><br />None of this is bad. It is what it is. But it's certainly eye-opening.<br /><br />I think so many of us who at this stage have very young children with Ds hold onto the fact that our kids have been born in a different era; so many advances have been made in medical care for individuals with Down syndrome, as well as therapies to address their developmental impairments. A lot of us hope - some even adamantly <span style="font-style: italic;">believe</span> - that it will be different for our kids. That if we do enough therapy, feed them the right concoction of vitamin supplements, and send them to the right schools, it will be different. They will one day hold real jobs and live independently. That's the ultimate goal of all this work we're investing in them now, right? That they will one day <span style="font-style: italic;">live independently</span>.<br /><br />Me? I don't pin a lot of hope on that for Finn. It's not that I'm a pessimist - I consider myself a realist. I believe it's <span style="font-style: italic;">possible</span> that he'll one day live independently, but not highly likely. And in all honesty, I am okay with that. I have pretty much accepted that chances are really good that he will always be dependent on us. And gosh, we have the perfect setup: we actually have a separate apartment downstairs, with its own kitchen and everything. If I weren't in my right mind, I might think that some divine force was at work when we bought this house five and half years ago - long before Finn was even a twinkle in our eyes.<br /><br />What scares the shit out of me is knowing that we are 40 years older than Finn, and if he lives to be in his 60s, well, it's not hard to do the math and realize that we won't always be here for him. That, my friends, sends a cold jolt through me at times and keeps me laying awake at night in semi-panic. I can't bear the thought of him ending up in some institutional setting, so I can only hope that his siblings will be able and willing to look out for him when the time comes. But what about their future spouses? What if they're not willing? <br /><br />Auughhh. The stress of this will surely take years off my life.<br /><br />And you know what? What really makes me sad about it all - and ultimately what I think left me feeling sad about the film - is that this honest dose of reality makes it really difficult to advocate for the lives of babies with Down syndrome. I suspect there are three main camps of people who will watch <span style="font-style: italic;">Monica & David</span>:<br /><br />- Families of adults with Down syndrome who will be able to relate on many levels;<br />- Families of babies and young children with Down syndrome who will feel like a bucket of cold water has been thrown on them;<br />and<br />- People who have no relation to anyone with Down syndrome who might have their feelings confirmed by the film that it's not a life they'd want - to raise a child who will always be dependent.<br /><br />I know that Finn's life is worthwhile, as are Monica's and David's lives. But can the world see that? No amount of talking or advocating is going to convince anyone. Unless you're living it, it's just really hard to fathom.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com9tag:blogger.com,1999:blog-7502307737528869885.post-19764929771944541712010-10-12T14:52:00.000-07:002010-10-12T15:54:27.304-07:00Down Syndrome Awareness Month: Stereotypes<span style="font-style: italic;">Women . . . they just can't make up their minds.</span><br /><br /><span style="font-style: italic;">Black people are such good athletes.</span><br /><br /><span style="font-style: italic;">Jews are naturally frugal.</span><br /><br /><span style="font-style: italic;">Men - all they care about is their work.</span><br /><br /><span style="font-style: italic;">Italians are such good cooks!</span><br /><br />Do you see a theme here? It's called <span style="font-style: italic;">stereotyping</span>. Stereotyping is a form of prejudice - even when the notions involved might be seen as positive - because it indicates an unwillingness or inability to see different classes of people outside of the molds that have been created for them by society. <br /><br />Don't you think that the above statements are offensive?<br /><br />What about these:<br /><br /><span style="font-style: italic;">Children with Downs are so loving!</span><br /><br /><span style="font-style: italic;">Oh, I LOVE Downs people!</span><br /><br /><span style="font-style: italic;">Downs people are always so happy!</span><br /><br />These are statements that we parents who have children with Down syndrome hear ALL. THE. TIME. And they always come out of the mouths of people who are not themselves parents of children with Down syndrome.<br /><br />Those statements seem positive and complimentary, don't they? And, seriously, who wouldn't want their kid to be happy and loving all the time? The problem is that these comments reinforce stereotypes about Down syndrome and don't allow room for individuals with Ds to be actual human beings. It turns them into caricatures, one-dimensional creatures devoid of true feelings, opinions, and personalities.<br /><br />Let me just clear some things up here -<br /><br />First of all, you don't KNOW Down syndrome unless you live with it day in, and day out. I don't care if you volunteer with people at your church who have Down syndrome, or if your best friend's cousin has Down syndrome, or if you shop at a grocery store that employs a person with Down syndrome - that does not make you <span style="font-style: italic;">in the know</span> about Down syndrome. I don't even care if you've researched Down syndrome at length, or if you're a therapist or teacher who works with kids who have Ds; trust me, your knowledge and experience is defined by the limitations of the context of your relationships with these people, so you're still not witnessing or experiencing the entire, broad context of <span style="font-style: italic;">knowing</span> Down syndrome. And even if you do have an intimate relationship with somebody who has Down syndrome, you only know <span style="font-style: italic;">that</span> person and how Down syndrome manifests in him or her. So for anybody to say, "Oh, I LOVE people with Down syndrome!" - well, it just rubs me all kinds of wrong. And I hear it a lot. So stop it.<br /><br />Moving on, let's talk about this popular notion that people with Down syndrome are extraordinarily happy and loving. I don't know where these ideas come from. I suppose it can be argued that all stereotypes have some basis in reality (maybe the cognitive impairments associated with Ds leave individuals with Ds generally unfettered by the prejudices and stresses so common in the general population?). Maybe some day when Finn is all grown up, I'll be eating my words - maybe he will, in fact, fulfill the happy, loving image so many people seem to have - though, if that happens, I'd like to be able to chalk it up to a loving, nurturing upbringing and not just that he's too stupid to be anything but happy. So far, I'm not seeing it, though. He's only two, but he shows us a full range of emotions all the time. He can be damn crabby. He's stubborn and determined. He's resistant to things he doesn't want, and shows a clear preference for certain things. He gets mad. He gets frustrated. And yes, he is affectionate and loving.<br /><br />He's a person. A real, flesh-and-blood person. Just like you are, just like I am.<br /><br />And that brings me to another popular notion: that people with Down syndrome are God's special angels. Okay, it's no secret that I don't believe any of that hooey, but I'm not going to debate religion or divinity here. I just want to say, though, that assigning special, divine purpose to people with Down syndrome - or to anyone! - wow. That's a lot of pressure, a pretty high calling to live up to, folks. <br /><br />Finn is human, not superhuman, I can assure you. The state of his genetic makeup can be broken down very scientifically - he's got an extra twenty-first chromosome in each cell of his body. This happened on a certain night in October, 2007 when Mom and Dad got to feeling a little frisky, and a certain sperm nailed a certain egg, and whamo! The chromosomes went just a tiny bit haywire and voila - Trisomy-21. So these bonus chromos of Finn's give him certain traits, like crooked pinky fingers, slightly up-slanted eyes, and, yeah, a lower-than-typical IQ. The end.<br /><br />He's not a cartoon character, or an angel, or a clone of every other person with Down syndrome. He's a unique individual. He's human. A real person.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com5tag:blogger.com,1999:blog-7502307737528869885.post-5680056259406825322010-10-07T12:51:00.001-07:002012-02-15T15:09:55.781-08:00Down Syndrome Awareness Month: Breast Feeding a Baby With Down SyndromeDISCLAIMER: I <span style="font-style: italic;">do</span> have a decidedly pro-breast feeding bent. However, this post is not intended to judge or criticize anyone who chooses not to, or who for whatever reason can't, breast feed. My intention is only to share my own experience in the hope of correcting some misconceptions and giving hope and encouragement to any new moms out there who would like to breast feed their new baby with Down syndrome.<br /><br /><div style="text-align: center;">***<br /></div><br />One of the many widely-held misconceptions about Down syndrome is that babies with Down syndrome won't be able to breast feed. This notion, I think, is propagated by medical professionals who, sadly, are still a generation or two behind in the perceptions they have about Down syndrome in general (this outdated knowledge base is also a factor behind the high termination rate in prenatally diagnosed cases of Ds, but I'll get to that in another post).<br /><br />I'm not a medical professional or a trained lactation expert. I'm just a mom who, before Finn was born, successfully nursed five babies for the long-haul, and was determined to breast feed my sixth baby who has Down syndrome. And I'm here to tell you that the notion that babies with Ds can't breast feed is misguided.<br /><br />Breast feeding a baby with Ds <span style="font-style: italic;">can</span> be challenging. The two main things associated with Ds that can hinder breast feeding are low muscle tone, and immediate and prolonged separation of mom and baby due to issues the baby might have that require a prolonged stay in the NICU. These two scenarios are not a given with all babies with Down syndrome; not every baby with Down syndrome is faced with difficulties in breastfeeding to begin with, but difficulties are not uncommon.<br /><br />One of the most common traits of babies and people with Down syndrome is hypotonia, or low muscle tone. What this means is that their muscles tend to be lax, and their overall posture in infancy might be described as "floppy." This low muscle tone can hinder a baby's ability to effectively latch on and suck, and a poor latch and a weak suck hinders mom's ability to produce milk, and so a vicious cycle is set in motion: the baby has trouble with latch and suck, therefore mom doesn't produce ample milk, therefore the baby doesn't get enough and gains weight poorly, therefore supplementation with formula may be implemented, causing the baby's interest in the breast to lessen, resulting in even less milk production by mom, resulting in complete abandonment of breast feeding and a confirmation of the belief that babies with Ds can't breast feed.<br /><br />The other scenario occurs when a baby with Ds is born with medical issues that necessitate separation from mom, and perhaps precludes oral feeds. The inability to establish breast feeding within the first few hours after baby's birth can definitely inhibit breast feeding, and certainly the longer mom and baby are unable to nurse because of the baby's medical issues, the harder establishing breast feeding will be.<br /><br />Combine those two situations and you definitely have an uphill battle!<br /><br />However, with perseverence and the right kind of support, in a lot of these cases the hurdles <span style="font-style: italic;">can</span> be overcome, and a happy breast feeding relationship <span style="font-style: italic;">can</span> be established.<br /><br />Since I'm not a trained lactation expert, I won't try to set forth specific techniques on how to overcome the challenges most commonly faced in breast feeding a baby with Down syndrome, but I'll share my own experience with Finn:<br /><br />Finn has always actually had pretty good muscle tone. I'm sure he's got lower tone that his "typical" peers, but he's never been noticeably "floppy" or overly-flexible. So whether low muscle tone played a part in our nursing challenges, I really can't say.<br /><br />What did most definitely stand in the way was his almost immediate hospitalization and inability to take oral feeds for over a week. As I described in my <a href="http://finniansjourney.blogspot.com/2010/10/down-syndrome-awareness-month-receiving.html">last post</a>, Finn was born at home, and we had him at home with us for roughly a half a day before we had to rush him to the ER because he was spitting up blood. In those first few hours after he was born, he was so sleepy, and he never really woke up enough to latch on well and nurse. Then we took him to the ER where he was hooked up to all kinds of tubes, wires, and monitors. By that evening, he was diagnosed with an intestinal blockage and admitted to the NICU. He had surgery the following morning to correct his <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002117/">duodenal atresia</a>. This was major gastric surgery which involved a 3-inch incision in his abdomen, cutting the ends of his unattached bowel and attaching those ends, and also the removal of his appendix while they were at it. While his intestines healed, he could not take any nutrition by mouth; he was fed intravenously for several days before I was allowed to attempt nursing. My milk came in during that time, and I began pumping at regular intervals around the clock and storing my milk for him to take when he would be able to. I already knew that he'd most likely have to start with bottle feeding, and it became clear to me pretty quickly that we had some major challenges ahead of us.<br /><br />I was pretty heartbroken at the prospect of possibly never being able to nurse him. For me personally, breast feeding is just a huge part of how I mother my babies, and I could hardly fathom not being able to share that with Finn.<br /><br />Fortunately, when he was ready to tolerate oral feeds, the nurses in the NICU were pretty supportive of my desire to breast feed, though it was frustrating because everything in the NICU had to occur by the clock and by the numbers. He had to be fed on the schedule the nursing staff set down for him, and if I couldn't make it to the hospital in time, he was given a bottle (of breast milk). If I was there to nurse him, he had to latch on within a certain number of minutes or I was made to call it quits and give him a bottle. The same went if he didn't take the prescribed number of ounces in the time allotted (they would weigh him on a specially-calibrated breast feeding scale before and after I nursed him to see how much he had taken; if he spit up, the napkin he spit up on was weighed and subtracted from the number of ounces he had been fed). It was all very stressful, and I spent a lot of time crying. The stress and the pressure didn't go very far in helping us get a good breast feeding relationship established. There were lactation consultants on hand, and they were helpful, but all in all, it was a frustrating, discouraging situation.<br /><br />Convinced that Finn would do better at home where I could nurse him around the clock without the constant supervision and vigilance of the nursing staff, I couldn't wait to get him out of the hospital. When he was discharged twelve days after he had been admitted, we were nursing, but it was hit or miss, and I was using <a href="http://www.medelabreastfeedingus.com/tips-and-solutions/112/nipple-shields">nipple shields</a> because he seemed to do better with the rigid shape of the shields which were similar to the bottle nipples he was already becoming used to. I would nurse him and then Michael would follow up with a bottle of expressed breast milk to make sure he was getting enough.<br /><br />As I suspected, he did seem to do better once we got home, and within a couple of days I was able to ditch the nipple shields. He was latching on well (it seemed), and nursing well (it seemed). It wasn't long before we stopped supplementing with bottles of breast milk, and I was exclusively nursing him.<br /><br />However, he wasn't gaining weight. He was 6 pounds even at birth, and lost the typical several ounces that babies lose directly after birth, then lost more after his surgery. I think in the NICU he went as low as around 5 pounds. By the time he was discharged, he was back up to his birth weight, but a week after being home, he was still at 6 pounds, and after another week or so, he only gained an ounce or two.<br /><br />I'll never forget our pediatrician - whom I love for the most part - sending me home with several cans of formula and telling me that Finn most likely just wasn't going to ever be able to nurse well because of his Down syndrome. I was devastated. None of my babies had ever received formula, and I felt like a failure.<br /><br />Fortunately, my midwife insisted that (a) if I was going to supplement, it should be with the breastmilk I had stored while Finn was in the NICU, and (b) I needed to find a really good lactation consultant. I did both. I found a lactation consultant who refused to believe that Finn wouldn't nurse because he had Ds. Yes, it was going to be a challenge, but it could be done, she insisted. She set me up with a <a href="http://www.pregnancy.org/article/lactation-aid-supplemental-nursing-system">SNS (supplemental nursing system)</a> and spent oodles of time with me and Finn over the course of several appointments, observing us and giving me tips on positioning, etc.<br /><br />Despite my perception that Finn had learned how to latch and nurse well, it apparently wasn't the case, and because he actually wasn't latching properly and his suck wasn't great, my milk production went down, so he wasn't getting enough, and the cycle was set in motion. With the LC's help, though, we were, finally, over time, able to overcome the hurdles that were in place. Unfortunately, my milk production never recovered on its own and I began taking herbal supplements to increase my milk production (<a href="http://www.nbci.ca/index.php?option=com_content&view=article&id=21:herbal-remedies-for-milk-supply&catid=5:information&Itemid=17">fenugreek and blessed thistle</a>), which helped to a degree for a time, but eventually I began taking <a href="http://www.nbci.ca/index.php?option=com_content&view=article&id=14:domperidone-getting-started-&catid=5:information&Itemid=17">Domperidone</a>, which helped immensely, and really, was the final missing puzzle piece for us.<br /><br />At twenty-seven months old, Finn is still nursing. He's had a couple of nursing strikes during periods of teething, but he's come back to it each time. At this point, it's probably as much for me as it is for him. He's my last baby, and I guess I'm having a hard time letting go.<br /><br />Getting breast feeding going was definitely an uphill battle for us, but through perseverance and good support, we were able to make it work, and it's been completely worth it to me.<br /><br />Writing it all out at this point, I can see how it might look more daunting than it's worth. Not everyone will want to go to those lengths (and not everyone will face the same, or any, difficulties). But for anyone who has their heart set on breast feeding their baby with Down syndrome, I guess the moral of my story is that it <span style="font-style: italic;">can</span> be done.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com9tag:blogger.com,1999:blog-7502307737528869885.post-24080919990414864112010-10-05T12:45:00.001-07:002010-10-05T14:26:17.131-07:00Down Syndrome Awareness Month: Receiving the NewsOctober is Down Syndrome Awareness Month. Unfortunately, I couldn't commit to taking part in the <a href="http://unringingthebell.typepad.com/my_weblog/2010/09/4th-annual-31-for-21-blog-challenge.html">31 for 21 Blog Challenge</a> this year (boo!), but there are a few topics near and dear to me that I would like to write about during this month.<br /><br />A question that's been posed to me over and over since Finn was born is "Did you know he had Down syndrome before he was born?" The answer is no, I did not.<br /><br />The next question is usually, "Didn't you have prenatal testing while you were pregnant with him?" And the answer to that is also no, I did not - with the exception of a mid-pregnancy ultrasound.<br /><br />I've written about my experiences with regard to these questions in detail over the life of this blog, but for anyone who hasn't followed our story from the beginning, here it is in a nutshell:<br /><br />Finn is our sixth baby, and, ironically, the only pregnancy during which I did not undergo any prenatal screenings for genetic abnormalities. I say ironic because I did do the usual screenings with all of my other pregnancies. With Kevin, my first pregnancy, I was 29 years old, and at that point in my life I was a very passive patient who just went along with whatever the doctor ordered, no questions asked. So when the AFP blood panel was recommended as a routine screening at 15 weeks, I did it, without ever giving it too much thought. Same with my second pregnancy. By the time I was pregnant for the third time (with twins), I was 36 years old, and it was recommended that I undergo an amnio because of my "advanced maternal age." I declined, as I was unable to justify the risks in my own mind. I did, however, submit to a First Trimester Screening, which consists of a detailed ultrasound which specifically examines the nuchal folds on the fetus's neck (which can indicate a genetic anomaly) in conjunction with a specialized blood panel. When I was pregnant with my fifth baby at age 38, I again declined an amnio, but did undergo the First Trimester Screening again. Lilah was a planned home birth (I was, by then, a much less passive patient!). However, because of early pregnancy bleeding, I was under the care of both my midwife and an obstetrician for about the first half of my pregnancy.<br /><br />When I look back now, I realize that each time I was pregnant and underwent prenatal genetic screenings, I did it, for the most part, under the assumption that everything would come out okay - <span style="font-style: italic;">normal</span>. I don't remember ever really suffering through much anxiety over the test results. I just did the screenings without a whole lot of thought, because that's just what you do, right? I don't think I ever gave much thought to what I would do if any of the screenings came back showing something unexpected. I just don't think it really occurred to me that anything like that would happen to <span style="font-style: italic;">me</span> - I couldn't envision it. Not that I felt I was special or anything, but . . . I guess on some level, I figured I had already had more than my share of unexpected and devastation elsewhere in my life - what were the odds of lightening striking yet again?<br /><br />I was 40 years old when I got pregnant with Finn. By then I had completely washed my hands of conventional obstetrical care. Finn was going to be another planned home birth, like his sister Lilah was, only this time, no obstetrical involvement. I put myself completely in the care of my midwife. Even so, I could have undergone whatever prenatal screening I wanted, but I opted out of all the screenings except for a mid-pregnancy ultrasound, mostly because I was dying to know the baby's gender, and because I figured if there were any serious anomalies that would preclude a safe home birth, it would show up on the ultrasound. The ultrasound showed a perfectly-developing baby boy, and we were thrilled - the score would be evened: three girls and three boys.<br /><br />During my last trimester, I began to retain A LOT of amniotic fluid. I developed <a href="http://en.wikipedia.org/wiki/Polyhydramnios">polyhydramnios</a>. By the end of my pregnancy, I was as big with Finn as I had been full-term with my twins. My midwife and I knew that polyhydramnios could be an indication of an abnormality, but neither of us were overly concerned. After all, I had had the ultrasound which didn't turn up anything irregular. She kept a close watch on me and the baby, and we were both doing fine.<br /><br />I went into labor at right around 38 weeks with Finn. When my water broke, the amount of fluid that gushed and gushed was unbelievable. He was born in the wee hours of the morning on July 7, 2008. The birth itself went just fine, though the whole thing took quite a physical toll on me. All the excess fluid and the extent to which my uterus had been distended kind of put my body into shock, and I could barely stand up without help after Finn was born (it was the same after my twins were born).<br /><br />We were very surprised with how big I had gotten to see this tiny 6 pound baby emerge. I was so exhausted by the birth that I don't think I was completely lucid or able to focus on details. I was surprised by Finn's small size, but noticed nothing troubling about him. Michael was concerned about how the baby's abdomen looked - it appeared distended. I couldn't see what he was talking about. I just needed to rest. Our midwife stayed for a couple hours after the birth and then went home. Later I learned that she did not go home to sleep, but to pull out her textbooks and do research. Something about the baby didn't seem quite right, but she didn't want to alarm us, and nothing seemed life-threatening, so she went home to gather information before bringing anything to our attention.<br /><br />I slept. The baby slept. I woke every so often and tried to nurse him, but couldn't get him to latch on. I was too exhausted to be concerned. I knew that babies are born with a reserve of fat and that they could actually go a day or so without feeding after birth and be fine. Besides, I remembered that it took some time for some of my other babies to become alert enough after being born to nurse. Finn didn't pee or poop either during those first several hours. I wasn't concerned. I was too tired, and my whole body hurt. I felt like I had been run over.<br /><br />My midwife came back early in the afternoon of July 7 to check on me and the baby. While she was there, Finn opened his eyes for what seemed like the first time. I will never forget that moment. I saw it in his face then, that he had Down syndrome. It was fleeting, and I pushed the thought away. No, it can't be, I told myself. I didn't say anything. I noticed that Sue, my midwife, was doing an extremely thorough exam of the baby - way more thorough, it seemed, than she had done of Lilah when she was born. Still, I refused, or was unable, to register that something might be amiss. Then she showed me his palms, how they each had a single line crossing them (which I had never seen or even heard of before), and she gently said, "You might want to bring this to your pediatrician's attention when you take Finn in." "Why?" I asked. "Because," she said, "it can sometimes indicate certain genetic anomalies." I went cold then. "Like what?" I asked. But I knew what she was going to say even before she said it. "Down syndrome."<br /><br />Things got crazy shortly thereafter. Finn was by then about 12 hours old and still had not nursed, nor peed or pooped. Suddenly he started spitting up blood, and that was really the beginning of the rug being pulled out from under us. Leaving our midwife with our other kids, Michael and I had to rush our newborn to the ER where over the next several hours he would be hooked up to an IV, have a tube fed into his stomach to flush it repeatedly, and undergo a number of exams and tests which would eventually show that he had a <a href="https://health.google.com/health/ref/Duodenal+atresia">duodenal atresia</a>, which explained my polyhydramnios, and also explained why he wasn't peeing or pooping. He was admitted to the NICU, and we went home that night with empty arms. The next morning, at one day old, Finn underwent major abdominal surgery to correct the duodenal atresia. Relatively speaking, in the gamut of abnormalities and surgeries, this was fairly straightforward and routine, but it was, of course, devastating to us to have to leave our baby and to see him struggle to recuperate from the surgery. He spent 12 days in the NICU, and it was during that time that we received confirmation via a blood draw that he did, in fact, have Down syndrome.<br /><br />Sometimes I wonder, looking back, if the news of his Down syndrome might not have been quite so crushing had we not also been dealing with his having to have surgery and to be in the hospital instead of at home with us. It all seemed to compound it.<br /><br />Nonetheless, I really feel that his diagnosis was delivered to us in the most gentle and humane way possible. Really, Finn himself was the first one to tell me, when he opened his eyes and I saw it in his face for that brief moment. I wasn't ready to accept it then, but there it was. I actually hold that moment as very precious now. My midwife suspected almost immediately after he was born based on different observations she made, but she wanted to be sure before she said anything, and she wanted to give us time to bond with him and get to know him without a scary diagnosis standing in the way. I will forever be grateful to her for the way she handled it. And the doctors at the hospital were very kind when his diagnosis was confirmed. Not one of them ever painted a grim picture for us of Finn's future, and as I sat there hour after hour, day after day, crying and trying to come to terms with it all, it was the doctors and nurses who told me over and over, "Who knows what he'll be able to do? Just wait and see."<br /><br />There's really nothing I'd change if I could. I don't at all regret not having prenatal testing - I'm glad I didn't know until after he was born. I had the luxury of just enjoying being pregnant and being excited about the coming arrival of another new baby. Had I known beforehand, I know myself well enough to know that I would have been scared and depressed - it would not have been the joyful experience it was. And knowing beforehand probably would have induced me to give birth at a hospital instead of at home, which I know I would have regretted.<br /><br />I'm glad that Finn was born at home. Not that I'm advocating home birth (I'll save that for my other blog!), but for me, it was the best thing. Giving birth at home allowed me a measure of love and support I never had with any of my hospital births. Finn was born into loving hands, in surroundings comfortable and comforting to me, and we were given hours and hours to be with him and love him without a diagnosis getting in the way. It would have been a whole different story had he been born in the hospital. A number of people seem to think the whole thing might have been better, or safer, had he been born in the hospital. I am here to say that that is just not the case. Being born at home did not cause his Down syndrome, and wouldn't have changed the outcome of his duodenal atresia. Being born at home was the best thing for him and for us, and I'm extremely thankful.<br /><br />And that's the way it unfolded for us.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com3tag:blogger.com,1999:blog-7502307737528869885.post-14691908712281100592010-10-02T15:28:00.000-07:002010-10-02T15:40:25.668-07:00And He's Off!<object width="640" height="385"><param name="movie" value="http://www.youtube.com/v/LrfMCwlhopQ?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/LrfMCwlhopQ?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="640" height="385"></embed></object><br /><br />This footage is from this afternoon, but Finn did his first real walking last night. Over the last month or so, he would occasionally take two unassisted steps when moving between furniture, but real, honest to goodness walking? I swear I've lately been feeling the beginning of a faint despair, wondering why he hasn't really walked yet. Watching him tear around the house behind his push toy, and even stand unassisted in front of a mirror and clap and dance with his reflection, I kept thinking, "He could walk if he wanted to, he just hasn't figured out yet that he can. <span style="font-style: italic;">When's he going to figure it out?</span>" And as with most things with Finn, just when I'm getting to the point of feeling really concerned and sad, he takes a giant leap. Time after time he shows me that he'll do things when he's ready, and not a moment sooner.<br /><br />So I just happened to walk into the living room last night and lo and behold, there was Finn, holding a ball in one hand and toddling across the floor. I swear, I thought for a split second that I was hallucinating. Seeing him traveling upright like that was a little like walking into the room and seeing your cat walking upright - it was that unexpected and alien a sight.<br /><br />And since then, he's been toddling all over the place - there's no stopping him now! It's so funny, it's like he's been doing it forever.<br /><br />How sweet it is, the payoff after all the waiting. Every achievement is so hard-won with him, and all the more precious because of it.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com18tag:blogger.com,1999:blog-7502307737528869885.post-36344216060793313732010-09-23T13:26:00.000-07:002010-09-23T14:16:49.487-07:00WordsA lot of hullaballoo has been, and continues to be, made about the R-word. And I've been right there, shaking my fist, demanding a change in attitude and vocabulary, demanding sensitivity and compassion for my son and people like him. <br /><br />I have to admit, though, that there are other words that sting me personally (and I'm sure others in my shoes), thanks to Finn and his extra chromosomes. That's the thing about having a child like Finn - it changes your perspective about certain things. And I'm here to say that that's not a bad thing.<br /><br />The other words I'm talking about are words like <span style="font-style: italic;">idiot</span>, and <span style="font-style: italic;">moron</span>, and <span style="font-style: italic;">imbecile</span>. More words that we casually throw around to describe what we perceive to be stupid or substandard. And like <span style="font-style: italic;">retarded</span>, they're all born out of what were once upon a time merely clinical terms used to describe individuals with developmental disabilities.<br /><br />I admit it: I am guilty of being a long-time user of <span style="font-style: italic;">idiot</span> - even since Finn was born. I have, however, found myself becoming very aware of my usage of the word, as well as other people's use of it (and the others mentioned above). And I've decided to eliminate those words from my lexicon. Because they <span style="font-style: italic;">do</span> sting.<br /><br />I'm not going to go on a big crusade to end the use of those words, because the truth is, as my friend <a href="http://downwithoz.blogspot.com/">Dan</a> pointed out (I asked Dan his thoughts on all this a while back, being that he's taken on the language issue in such a big way):<br /><br /><span style="color: rgb(204, 0, 0);">"My personal opinion is that 'idiot' and 'moron' are sort of archaic.</span><br /><span style="color: rgb(204, 0, 0);">You would never see a medical report that listed your son as an idiot</span><br /><span style="color: rgb(204, 0, 0);">or moron. You could quite possibly see a report listing him as</span><br /><span style="color: rgb(204, 0, 0);">retarded. And so 'retarded' and 'retard' are much more hateful, in my</span><br /><span style="color: rgb(204, 0, 0);">opinion."</span><br /><br />I think this is a good point, although I do have to say that there is clearly a movement underway to eliminate "retarded" even from medical terminology. I don't believe I've ever seen anything in any paperwork, medical or otherwise, pertaining to Finn that included the word "retarded;" in fact, just today, I received a copy of something from his pediatrician that lists him as "dev. delayed," which, really made me feel very pleased with the progress that has been made in describing these individuals in non-offensive terms. That said, though, I think it may end up being a double-edged sword - if "retarded" is successfully eliminated as a clinical term, then eventually won't it be considered perfectly okay to use in a non-clinical manner, just like "idiot" and "moron" have evolved?<br /><br />What I'd like to see is the elimination from our human vocabularies, in all of their varieties, of any and all slurs that in any way put down any class of people - be that cognitive ability, race, gender, sexual orientation, whatever.<br /><br />That said, I fully acknowledge our need as a people for epithets, for words that emote and express frustration with life's little stupidities - yes, even stupid people (and by stupid, I am not referring to IQ, but rather a failing to exercise common sense or class). So I offer you here a list of alternative language:<br /><br /><span style="font-weight: bold;">Adjectives:</span><br /><br />Asinine<br />Ridiculous<br />Unbelievable<br />Absurd<br /><br />(Try unbelievable with an exclamation point, and with extra emphasis on the third syllable: "UnbeLIEVable!" Very effective. Go ahead, try it. Also, "ridiculous" and "unbelievable" can be used to boost each other, as in "Ridiculously unbelievable!" or "UnbeLIEVably ridiculous!"<br /><br /><span style="font-weight: bold;">Nouns (Words to Describe People):</span><br /><br />Ass<br />Asshole<br />Asshat<br />Jerk<br />Bonehead<br />Buffoon<br />Dolt<br />Twit<br />Shithead<br />Meathead<br />Jackass<br />Numbskull<br />Fool<br />Dickhead<br /><br />I'm sure I could go on an on. And perhaps you think I'm kidding. I'm not. Although I do hope you find these lists of alternative words entertaining, I'm serious about using them to replace <span style="font-style: italic;">idiot</span>, <span style="font-style: italic;">moron</span>, <span style="font-style: italic;">imbecile</span>, and yes, <span style="font-style: italic;">retard</span>.<br /><br />Come on, people, really. It's really, really not too difficult to think before you speak, to exercise a little sensitivity and compassion for who your audience might be. And honestly, putting forth just that little effort will probably make you feel <span style="font-style: italic;">good</span>.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com14tag:blogger.com,1999:blog-7502307737528869885.post-55734843191707825412010-09-19T21:34:00.000-07:002010-09-19T21:36:49.516-07:00Down Syndrome Awareness VideoIn case you missed it via Facebook, check out this wonderful video:<br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/WdhkyJMgkTA?fs=1&hl=en_US"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/WdhkyJMgkTA?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br /><br />(And notice who's featured in it!)Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com2tag:blogger.com,1999:blog-7502307737528869885.post-36878477949555950442010-09-16T13:25:00.000-07:002010-09-16T14:23:18.021-07:00If Only The World Could See Him Through Her EyesIt's interesting to see, with all the kids I have, the alliances that have developed. Finn and Lilah, they're tight, those two. At twenty-one months apart, they're the closest to each other in age aside from the twins. I always knew they loved each other and got along well, but since Lilah started attending preschool recently, I'm really seeing how close they really are. The three mornings a week that Lilah isn't here, although I try to do things to keep Finn occupied and entertained, I can see that he misses his sister. He often wanders aimlessly from room to room, I'm sure looking for her. Yesterday when I picked Lilah up from school, her teacher reported to me that she was sad and out of sorts in the morning, saying "I want Finnian."<br /><br />And when they're together, it's a joy to behold. Lilah sings silly songs to Finn, she "reads" books to him, she finds things for him to bang on because she knows he loves to bang on things. She talks to him with the assumption that he understands everything she's saying, and she also speaks to him in his language; there is often a volley of "Babababababa," and "Da ... da ... da ... DAHHHHHHHH!" between them, and then they both crack up as if over some joke only the two of them get. She hugs him with abandon, and often. She cheers for him without condescension, and helps him without pity.<br /><br />And you know what? She has no idea that he's different. Sure he's two years old and then some, and he doesn't walk yet or say much in the way of real words. Sure he gets a kick out of pulling hair, and he can often be seen with his tongue protruding from his mouth. To Lilah, Finn is just Finn, and he's always been the way he is, and it means nothing to her. He's just her baby brother.<br /><br />And yes, she is blissfully ignorant of his impairments and limitations. The day will come, I'm sure, when she will be more conscious of his differences. But I think she'll still love him and accept him without reservation even then.<br /><br />I wish the whole world could see Finn through Lilah's eyes.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_NfXVuHIhOH8/TJKKdTSHg4I/AAAAAAAADbI/scLynF77qgo/s1600/DSC_0004.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 266px;" src="http://1.bp.blogspot.com/_NfXVuHIhOH8/TJKKdTSHg4I/AAAAAAAADbI/scLynF77qgo/s400/DSC_0004.JPG" alt="" id="BLOGGER_PHOTO_ID_5517624729479381890" border="0" /></a>Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com6tag:blogger.com,1999:blog-7502307737528869885.post-11414720306573394502010-09-07T12:30:00.000-07:002010-09-07T12:54:33.818-07:00Good EatsPerhaps some (a lot!) of you are growing weary of my posts about Finn's eating. Indulge me anyway!<br /><br />Feeding has been one of the two major, stress-inducing issues we've had with Finn (the second being speech/communication, which really, compared to feeding, has been a far smaller concern thus far). Feeding has been an issue for a very, very long time. Long before he was even a year old, I was concerned and stressed out over his apparent inability to handle anything beyond purees (and even getting him on purees in the first place was an ordeal). This is why whenever he makes strides in the area of feeding, I am inclined to shout it from the rooftops!<br /><br />Feeding seems to be following a typical pattern with Finn with regard to mastering any new skill: just when I finally feel hopeless, he suddenly takes a step forward, as if to say, "Geez, Mommy, have some patience, will ya? I'll get there when I'm ready."<br /><br />So over the last several weeks, Finn has made great strides with foods in the way of showing a definite interest in foods other than his usual fare of jarred baby food, pestering me for food when we sit down as a family for dinner, allowing me to feed him a variety of things from my plate with a fork, and signing "more." He has become very proficient at self-feeding things like pretzels, crackers, Cheerios, and Veggie Straws. It's now time to put the two together: encouraging him to self-feed regular table food. Behold:<br /><br /><object height="385" width="640"><param name="movie" value="http://www.youtube.com/v/I8DcD9I42qY?fs=1&hl=en_US"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/I8DcD9I42qY?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" height="385" width="640"></embed></object><br /><br />This was a HUGE first: he sat down with the family and had for his dinner exactly what we all had for dinner (penne pasta with marinara and meatballs, cut up into bite-size pieces), and he fed himself. He did put a little too much in his mouth at one point, which caused him to gag and spit it out, but he got right back on the horse, so to speak. And he finished that entire bowl of pasta and meatballs.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_NfXVuHIhOH8/TIaXhEuXdwI/AAAAAAAADao/Rg1UCtbTd5Y/s1600/DSC_0056.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 266px;" src="http://4.bp.blogspot.com/_NfXVuHIhOH8/TIaXhEuXdwI/AAAAAAAADao/Rg1UCtbTd5Y/s400/DSC_0056.JPG" alt="" id="BLOGGER_PHOTO_ID_5514261388221445890" border="0" /></a><br />Way to go, big boy!Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com4tag:blogger.com,1999:blog-7502307737528869885.post-18029112063575203472010-09-01T21:02:00.000-07:002010-09-01T21:37:53.991-07:00Fed Up With Early InterventionFinn has in-home speech therapy every Wednesday morning at 9:00. Every week his SLP is late - anywhere from 10 to 25 minutes late. Today? Well, today she just didn't show up at all. I waited. And waited. And waited. And posted my frustration on Facebook. And waited some more. All the while growing more and more peeved. It's not as if I don't have other things to do. And I plan things around Finn's therapy. So when she's late, it throws all my planning off, which is frustrating to say the least.<br /><br />So, in the end, she never showed up this morning. I tried calling her at about 20 to 10, but only got her voice mail, and didn't leave a message. By the time it was a quarter to 10 and she was 45 minutes late, I started thinking, "Well, what if she shows up now? I just won't answer the door!" But she never showed. At a few minutes past 10, I called her number again, leaving a message telling her that I wasn't sure what happened and asking her to call me.<br /><br />She finally called me back at a little after 6:00 this evening. Know what she said? She said that she had put us down for Thursday mornings from now on. Problem is, she never discussed this with me! So if I had never called her and left a message, would she have just shown up tomorrow morning? I have no idea. Apparently she can't fit us in on Wednesday mornings anymore - something to do with the school year starting . . . I don't know. What does this mean? Have we been displaced by another of her clients? Are we not as important, so we just get booted from the Wednesday morning time slot with no discussion? I have no idea.<br /><br />And I can't do Thursday mornings. Or rather, I won't. Lilah, my three-going-on-four-year-old, just started attending preschool three mornings a week, which means that Tuesdays and Thursdays are the only days now that I have her home with me. We already do OT on Tuesdays, which means those are mornings that we can't go to the park or do other fun things. In another year, she'll be in kindergarten five days a week, and I'll be damned if I'm going to use up all the days I have left with her doing therapy with Finn - therapy that I'm not even convinced is having any impact on him.<br /><br />So I called Rebecca back and told her that Thursdays will not work for us, that I need either a Monday morning slot or a Friday morning slot. We'll see where that goes.<br /><br />The thing is, she's supposed to be THE BEST. She is highly regarded as a SLP. And she does have a great rapport with Finn (which is not to say that I believe he's actually getting a whole lot - or anything - out of ST). I like her as a person. She's good with my kid. And she comes to my house (when she shows up), and I guess she's one of the only SLPs who does in-home therapy in our area. I'm not inclined to dump her and start over with someone else at this point - especially since Regional Center is only covering ST for us through October and then we have to go through our health insurance which will likely make us go across town for ST, which I will not do, so effectively I expect we'll be done with ST come November, until Finn turns 3 anyway and is transitioned to the school district.<br /><br />Blah. I'm just so fed up with the whole thing - Early Intervention as a whole. If you believe that your kid is making some huge gains as a direct result of EI, then more power to you. But looking back on two years of this crap now, I don't feel that it's been an overall positive experience for us. The benefits - whatever they are - certainly have not outweighed the negatives.<br /><br />I remember being in the NICU with Finn when somebody first came and talked to me about Early Intervention. I was told that he needed to start therapy as soon as possible, and I remember being bewildered and saying, "As a newborn? He needs therapy as a newborn?" The woman - I guess a social worker from Regional Center - said in this no-nonsense tone, "Don't you want him to be the best he can be? Then yes, he needs to start 'baby school' as soon as possible." That's what they do. They sell it to you like that, playing on your fears and your guilt, and you're led to believe that if you're a good parent, if you want what's best for your child, this is what you'll do: you'll put him in this program from birth that will attempt to <span style="font-style: italic;">normalize</span> him. And even when it becomes a huge imposition on your time, even when your other kids are impacted, you keep going because that's what you're supposed to do, and quitting altogether is too scary because you don't want to look back and feel like you didn't do everything you could do.<br /><br />Looking back, I wish I would have asked that woman: what exactly is the goal of Early Intervention? What exactly are the benefits I can expect to see? Does therapy guarantee anything for my kid?<br /><br />Kevin, my thirteen-year-old asked me today, "Mom, why does Finn have therapy? You hate it. And isn't he going to learn how to do all those things anyway, just slower? What's wrong with that?" Astute kid.<br /><br />Fed up.Lisahttp://www.blogger.com/profile/07604477175816651214noreply@blogger.com8