tag:blogger.com,1999:blog-11993485115721342372024-03-13T13:25:30.065-04:00Adventures in Preemie-sittingThis is the story of my life as a SAHM to a deaf-blind former 24 week preemie. Isolating, frustrating, heartbreaking, and so worth it.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.comBlogger240125tag:blogger.com,1999:blog-1199348511572134237.post-86506616385302976492011-01-19T08:42:00.000-05:002011-01-19T08:42:05.369-05:00Star Student (I knew this day would come)I just received an e-mail from Noah's teacher that Noah will be star student next week. The star student has a board in the classroom where all sorts of information about them are posted. There are also pictures about their life: the family vacation last summer, learning to ride a tricycle, baby pictures, etc. Every time I look at these boards I feel a lump in the pit of my stomach. I knew that this day would come and I would have to make a decision. I have numerous baby pictures of Noah, many of which I cherish, but none of them look like normal baby pictures. I have a pictures of Noah coming home from the hospital: all 3 times. I have a picture of his first extubation and the day that they put two IVs in his head and he looked like he had horns. I have a picture of him propped next to his pulse ox the first time he satted 100 without O2 and pictures of him covered in tape from the times where he had to have O2, hearing aids, and eye patches all at the same time. These are all fond, happy memories, but I'm not sure I'm ready to share any of that with Noah's kindergarten class. They're my special memories and I don't think the teachers and parents would understand why they're so special. At least I have until Monday to decide.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com2tag:blogger.com,1999:blog-1199348511572134237.post-6466109154379906342011-01-02T15:32:00.000-05:002011-01-02T15:32:43.492-05:00Dear Teacher, (the real letter)<div class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-size: 14pt; line-height: 115%;"><span style="font-family: Calibri;">We would be happy to discuss your concerns about Noah mentioned in the frequent notes and e-mails prior to Christmas break. We don’t feel that we were able to communicate effectively with you in writing, so hopefully an in person meeting will help. Please let us know a few possible times and we will get back to you with what is best for us. </span></span></div>Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com3tag:blogger.com,1999:blog-1199348511572134237.post-43491648219698085012010-12-16T09:53:00.000-05:002010-12-16T09:53:50.463-05:00Dear Teacher,Thank you for always assuming the worst of my child. He really wants to try his best knowing that you will criticize his every mistake. Refusing to praise his positive behavior is a great tool, and one we would like to try at home. I think the withholding of praise will make Noah try harder to do his best each day. <br />
You are right to punish him vocally in front of the entire class. I'm sure that you're right and it will not affect the other students' views of him at all. He is an evil child and needs to be broken in a way only you can do. <br />
I also appreciate your daily criticism of my parenting. Knowing that you assume everything I tell you is either a lie or misguided makes my day so much better. I look forward to opening your e-mails each day to read the gems of wisdom that you have for me. I'm considering starting a scrapbook of all of the lovely typed letters that come home in Noah's backpack as well. What a great keepsake. Thank you! Please continue to berate my child for the affects of his disability. It makes life so lovely for our family. I'm so glad you're a part of our team. Enjoy your snow day. I know we will!Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com5tag:blogger.com,1999:blog-1199348511572134237.post-91786248381321702372010-12-03T09:48:00.000-05:002010-12-03T09:48:49.672-05:00Changes Through The YearsAt the top of my blog you can see the following statement that I wrote when I first started this blog: <br />
<strong>This is the story of my life as a SAHM to a deaf-blind former 24 week preemie. Isolating, frustrating, heartbreaking, and so worth it.</strong><br />
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Things have changed a bit since then. <br />
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I'm still mostly a SAHM, but I do substitute occasionally at the school where I used to teach now that Noah's in full day kindergarten. It's nice to get out of the house, although it is sometimes weird to me that everyone else's normal, seeimingly stress-free lives continued while I was at home drowning. <br />
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<br />
Noah's still got that dual sensory impairment, but he's learning to use his remaining hearing and vision to his advantage. He still strongly prefers auditory and touch input to visual, but he does use his vision as well. <br />
The preemie thing will never go away, and it haunts my dreams. I can't bear to deal with my friends with newborns, but warm up by the time the babies are a 2 months old or so (which, coincidentally is the adjusted age that Noah was when he came home from the NICU). I'm afraid to have another baby, and sometimes I think I'm more afraid to have a full term baby and hate it then I am to have another preemie and deal with all the drama and stress that it brings.<br />
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Life is still frustrating and often heartbreaking, but not so isolating anymore. I have managed to build a wonderful support network full of moms who understand what my life is like. Many of them only know part of my story, having either a deaf child, or a blind child, or a preemie, but I think having a child with any type of struggle makes you more open to other families with less-than-perfect children. <br />
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The one thing that hasn't changed at all is that it's still so worth it. For all the stress and drama and heartbreak, I can't imagine not having my sweet, smart, charming little boy in my life.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com4tag:blogger.com,1999:blog-1199348511572134237.post-78084622612048802712010-11-11T08:21:00.000-05:002010-11-11T08:21:50.343-05:00Potty Training and other significant delaysYesterday my sister in law posted on Facebook that her son had been accident free for 4 days. It was day 9 of potty training. Noah is a full 3 years older than his cousin and I think he's only ever had one accident free day in his life. He is making success with potty training, and this year is easier than last year, and someday maybe (hopefully) he'll start knowing when he needs to go and/or become willing to try to go at school eventually. Clearly that day is not coming anytime soon, though. <br />
Yesterday at church Noah was chasing his friend's baby brother around the church. He chose to chase him because he could never keep up with his friend (6 months younger than him) or his friend's little sister (2 years younger than him). <br />
On Monday I substituted in a 3 year old preschool class. Many of them needed less assistance than Noah does for regular things like putting on a coat or opening a backpack. <br />
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It can just be a little depressing.<br />
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It's not that Noah can't do those things, because he is always making so much progress and I know he'll do them someday. The hard part is watching Noah's friends, and then his friends' little sisters, and eventually his friends' baby brothers pass Noah at lightning speed, knowing that although he's chugging away he'll never catch up. I'm so thankful for all he can do, but someday he's going to realize all the things he can't do that other kids his age can and I dread that day.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com4tag:blogger.com,1999:blog-1199348511572134237.post-20738870692957968772010-09-20T10:44:00.000-04:002010-09-20T10:44:18.548-04:00Pre-Teaching<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/_NsfCvKqAjX8/TJdy3bppsYI/AAAAAAAAA4o/lqrUuTi9YzM/s1600/picture+353.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qx="true" src="http://4.bp.blogspot.com/_NsfCvKqAjX8/TJdy3bppsYI/AAAAAAAAA4o/lqrUuTi9YzM/s320/picture+353.jpg" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">One thing that our AV therapist always drilled into us was the importance of pre-teaching material to deaf children. If Noah is spending all of his day trying to figure out what was said, he's not going to have much time left for learning. If we introduce important vocabulary or concepts in advance it puts him on a more level playing field with the rest of the class.</div><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/_NsfCvKqAjX8/TJdyfjhKBII/AAAAAAAAA4g/rFM53_KJ6nk/s1600/picture+352.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qx="true" src="http://2.bp.blogspot.com/_NsfCvKqAjX8/TJdyfjhKBII/AAAAAAAAA4g/rFM53_KJ6nk/s320/picture+352.jpg" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">As Noah gets older I imagine that pre-teaching will be boring and tedious, but in kindergarten it's lots of fun. It's apple week at Noah's school so we decided to take a pre-teaching field trip to a local orchard. We came home with a half-bushel of fresh picked apples and a boy tired enough to go right to bed. Noah came home with lots of new vocabulary (and a few new bruises, but at least he didn't fall down the mountain!). All in all it was a great trip. </div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/_NsfCvKqAjX8/TJdybldJZfI/AAAAAAAAA4Y/wuJzhUFBbxQ/s1600/picture+344.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" qx="true" src="http://1.bp.blogspot.com/_NsfCvKqAjX8/TJdybldJZfI/AAAAAAAAA4Y/wuJzhUFBbxQ/s320/picture+344.jpg" /></a></div>Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com3tag:blogger.com,1999:blog-1199348511572134237.post-67211256933348020612010-09-14T11:45:00.000-04:002010-09-14T11:45:46.950-04:00ObservationI'm getting ready to head out the door for my first observation of Noah in his new classroom. Our new district is pretty strict about parent observation: I had to get permission from the principal and I'm supposed to keep my time in the classroom to just 30-45 minutes. It seems a little ridiculous to me since I won't even get to see the entire math lesson, but I'm trying to play nice. I find it very interesting that although I was 99% sure that Noah was not yet using an FM system at school, it was not mentioned to me until yesterday afternoon. So much for Noah not listening or paying attention. He has to be able to hear to do that! <br />
I almost cancelled on them today since this will be Noah's first day with his FM and he's not liable to be acting like himself. I decided that at the very least I'll get to check out his FM system if I come in today. Plus I didn't know if I'd get another chance to observe since there are so many hoops to jump through!<br />
Even without the FM system he's coming home with a lot of new language. I think it's great to hear all the little kindergarten slang words, although I'm not sure I'll be thrilled the first time he brings home a naughty word. I really hope he acclimates well to being in this inclusion setting, because he's benefitting so much from being around the other kids. Only time will tell! Nine more days 'til the IEP.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com2tag:blogger.com,1999:blog-1199348511572134237.post-41862374175194885692010-09-11T09:52:00.001-04:002010-09-11T13:03:19.234-04:00Be Careful What You Wish ForI have lots of "useful" things do this week. Noah's reflux is a bit out of control leading to no sleep and Noah being a bit out of control at school. I am observing in Noah's classroom on Tuesday (taking the maximum 45 minutes allowed by the school district) in preparation for an IEP meeting next week that I am really dreading. We got a "bad note" from school on Friday along with a progress report with 5 check marks. Noah went from "needs improvement" to "satisfactory" for staying on task on his progress report but the note seems to state the opposite - I need to get that sorted out. My friend is watching Noah Tuesday night so that Brian and I can go to Back to School night and I am watching her kids on Thursday for the same reason. My Wednesday morning Bible study starts this week. I need to finish unpacking my guestroom since grandma's coming for a visit soon. Yikes!Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com1tag:blogger.com,1999:blog-1199348511572134237.post-36643799622855162612010-09-09T08:59:00.000-04:002010-09-09T08:59:39.088-04:00Why I Feel UselessI'm a stay at home mom whose kid is gone 9 hours a day. <br />
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We made the decision for me to stay home before we knew that Noah would be born early, have a long hospital stay, and have long term consequences of his premature birth. When he was born I knew it was the right decision for him. I was able to take the time to really focus on Noah and what he needed, and I know he has benefitted from it. Early on it was very isolating. When I decided to stay home I thought about how fun it would be for me to drop my little guy off at the church nursery so that I could attend the Wednesday morning Bible study. I pictured playdates at the park and buying french fries at chick fil a so the kids could play when it was too hot outside. Almost all of my friends had kids the same year so I knew it would be a wonderful bonding experience for all of us. But then I had a preemie...<br />
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Church nursery is full of germs and to be avoided at all costs when you're trying to grow healthy lungs in your baby or toddler. I didn't end up joining the Wednesday morning Bible study until Noah started school.<br />
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We've had a few playdates through the years, but rarely at the park since pollin makes Noah puke, and they're few and far between since many parents seem to think that disabilities are contageous.<br />
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Chick fil a is wonderful but the play area is full of static and germs. At 5 Noah still doesn't have the physical ability to climb up into the tunnels without a hand to hold and is too tall to pass as young enough for the baby/toddler area so unless we're there with friends with older kids it doesn't happen. And although Noah has become pretty insistant that we buy him a kids meal when we go to chick fil a, he still doesn't eat french fries or chicken nuggets or drink lemonade. <br />
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Through the years I've found other ways to keep from going crazy. I have a few friends who are wonderful and don't mind my kid acting a little weird or different when he plays with their kids. Noah is an avid shopper and is always up for a trip to Target or the fabric store. He loves to play dress up, act silly, do craft projets and read books. <br />
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I really truly believe that I've done what I can to prepare Noah for school. He's not potty trained. He can't write his name small enough to fit on a line. He needs help blowing his nose and buttoning his pants. But he can do more than he could last week, which is more than the week before and so on. He might not be making quick progress but he's always learning and growing and he although he gets frustrated at what he can't do that he wants to do, he has a generally good attitude about his abilities and is always willing to try. <br />
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Somehow I didn't realize that sending Noah off meant an end to all of that. For years I've been Noah's primary teacher, now I'm just his advocate. It's an important job, but its hard learning to change. I feed Noah breakfast and dinner. I put him to bed and wash his clothes. <br />
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I miss him. <br />
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Soon I'll find other things to occupy my time. That Wednesday morning Bible study is about to start. Volunteer orientation is in a few weeks at Noah's school and then they'll be sick of me. Once I get my wrist surgery out of the way I hope to start substitute teaching. But it won't ever be the same again. As much as staying at home with Noah was frustrating and crazy and overwhelming, staying home without him is sad and lonely and empty.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com2tag:blogger.com,1999:blog-1199348511572134237.post-14152515927682934252010-09-07T08:33:00.000-04:002010-09-07T08:33:42.902-04:00Progress Report, continued...We briefly discussed Noah's progress report with him on Friday. We told him that he had done a good job at school, and that his teacher liked how he did his best work, obeyed the rules and was kind to his friends and polite to adults. We told him that she wanted him to work harder at listening, following directions, and paying attention. We gave it a generally celebratory bent even though it wasn't exactly a stellar report, because I know he did work hard to do his best at school. After letting him watch a little TV as a treat we didn't bring it up again.<br />
This morning when Noah woke up he told me "I'm going to be a good listener and follow directions and get lots of check marks." All morning he wanted to pretend he was at school and have me give directions for him to follow. He practiced sitting still with his hands folded and putting one finger over his mouth while the other pointed to his ear (his "I'm a good listener" pose). Noah may not get all check marks this week, but it certainly won't be from lack of effort.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com4tag:blogger.com,1999:blog-1199348511572134237.post-40795700790191819172010-09-03T16:46:00.000-04:002010-09-03T16:46:16.215-04:00Noah's first progress report<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/_NsfCvKqAjX8/TIFarI9tNDI/AAAAAAAAA4I/LbAsbisrC0Y/s1600/progress+report+%231.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="261" ox="true" src="http://1.bp.blogspot.com/_NsfCvKqAjX8/TIFarI9tNDI/AAAAAAAAA4I/LbAsbisrC0Y/s400/progress+report+%231.jpg" width="400" /></a></div>As an only-ever-got-check-plus type of student, my initial reaction to this progress report was disappointment, but then I got over it. Noah did his best work, followed the rules, and respected others. What a great kid! The needs improvement areas are not at all a surprise to me, although it does make me wonder whether the FM system is in place yet. I haven't yet decided what to write as a parent comment. My husband suggested "I know. Isn't it frustrating?" and my first thought was, "That's why he has a one on one paraprofessional." but I think I'm leaning toward something like "This is pretty typical of Noah's past school experiences. We were hoping the FM system would help with those areas." I must say that I give a general ed. teacher major kudos for being that gracious about how difficult it is for Noah to fit in with a class of 20 kindergarteners. I know it can't be easy for her, but she really seems to have embraced having him in her classroom.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com2tag:blogger.com,1999:blog-1199348511572134237.post-40646757951278540442010-08-26T09:05:00.000-04:002010-08-26T09:05:25.826-04:00Vote for Noah's friends!<a href="http://www.bevphotos.com/ChickfilAContest/tabid/115/Open/1/Default.aspx">Vote for Noah's friends Abby and Becca!</a> Noah and Abby lived together in the NICU for many months. They were the only two 24 weekers at the time so our families got to know each other well and have been close friends ever since. Becca tried to come at 24 weeks too, but thanks to some great doctoring and lots of bed rest, they were able to hold her off until 39 weeks. Abby is #2190 (in purple with the Eiffel Tower) and Becca is #2109 (in polka dots). Here they are playing video games with Noah on the 4th of July. <div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/_NsfCvKqAjX8/THZlz5xAxzI/AAAAAAAAA4A/OCiPi7guw3A/s1600/4th5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ox="true" src="http://4.bp.blogspot.com/_NsfCvKqAjX8/THZlz5xAxzI/AAAAAAAAA4A/OCiPi7guw3A/s320/4th5.jpg" /></a></div>Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com1tag:blogger.com,1999:blog-1199348511572134237.post-34610046017645298222010-08-24T13:06:00.003-04:002010-08-24T13:22:22.948-04:00Kindergarten<img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 300px; DISPLAY: block; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509027602833534994" border="0" alt="" src="http://2.bp.blogspot.com/_NsfCvKqAjX8/THP_aqy28BI/AAAAAAAAA34/H0C3uxPC0co/s400/school5.jpg" /><br /><div>This morning Noah left our house on a school bus. He didn't look back. With him he took his LL Bean backpack, Scooby Doo lunchbox, extra batteries, his cane, his magnifier, and his monocular. He took a "special" bus and his one on one paraprofessional will be with him all day but for the first time ever he's in a full inclusion situation. He still has a lot of needs and his IEP is still more than 60 pages, but I know that he can and will learn. Five years ago at this time we were dealing with mutiple surgeries and the threat of a trach. We weren't sure Noah would live long enough to see kindergarten, and yet here he is. I couldn't be more proud. </div>Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com9tag:blogger.com,1999:blog-1199348511572134237.post-56493899294341023492010-08-11T20:30:00.004-04:002010-08-11T20:47:48.637-04:00Glasses<a href="http://1.bp.blogspot.com/_NsfCvKqAjX8/TGNClSOuDVI/AAAAAAAAA3w/rz59HeT6OrE/s1600/115_1543.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5504316377893047634" border="0" alt="" src="http://1.bp.blogspot.com/_NsfCvKqAjX8/TGNClSOuDVI/AAAAAAAAA3w/rz59HeT6OrE/s400/115_1543.JPG" /></a>Noah goes through glasses with about the same regularity that monkeys go through bananas. Between poor eyesight, poor balance, and a delayed protective reflex (he doesn't stick out his hands to catch himself) his glasses don't stand much of a chance. We visit our neighborhood Lenscrafters quite regularly and are quite loyal to them, because we love their free repairs and inexpensive replacements. We got our most recent pair of frames in early June and have been struggling to keep them in mostly the correct shape to fit his face since then. We go in for repairs every two weeks or so and tonight was a big one. Noah somehow managed to bend his glasses in half so that the two eye holes were facing each other. We were pretty sure we'd be forking over the money for a new pair which is unfortunate since in less than a month we go back to optho for a new prescription. They managed to bend them more or less into a normal shape but then the thing we'd been dreading happened - they snapped in half. To our surprise they gave us a new set of frames at no charge. If we weren't already loyal customers we would be after tonight. Hooray for Lenscrafters!Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com2tag:blogger.com,1999:blog-1199348511572134237.post-59535877844104362292010-08-09T12:57:00.002-04:002010-08-09T13:00:57.464-04:00Awww!If you've ever asked Noah what he's thinking about 9 times out of 10 the answer is "Tinkerbell". He was in awe to get to meet his hero a few weeks ago at Disneyland.<br /><br /><a href="http://www.disneyphotopass.com/ecardviewer.aspx?id=2af2a309-4c1d-4004-935c-3658c0b98b11"><img border="0" src="http://www.disneyphotopass.com/api/photostore/previewedits.pix?ImageID=79efd9b1-e2ef-4b78-b3b0-9db700d2569d&aspectratio=5x7&width=275" /></a>Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com3tag:blogger.com,1999:blog-1199348511572134237.post-54474235636763435162010-07-30T18:55:00.003-04:002010-07-30T19:07:10.115-04:00Oh It's Time to Say Goodbye to All Our FriendsThe bags are packed. The apartment is tidy. Our boarding passes are printed. Time to head home.<br />Today was a day filled with tears, both happy and sad. Our entire family has made such good friends here and we will miss them terribly. Noah repeatedly asked why his friends couldn't go on the airplane with him and now keeps singing "If you're ready to go to school clap your hands" as if somehow magically that will make things not come to an end.<br />So what is the biggest thing I've taken away from the JTC? Hope. Hope that I can do it. Hope that Noah will have friends and learn and grow up to be productive and happy and independent. Before I didn't dare to think too far into the future, but now I feel like I have the freedom to dream.<br />Thank you John Tracy Clinic - for everything.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com3tag:blogger.com,1999:blog-1199348511572134237.post-62028962092013306762010-07-28T00:08:00.005-04:002010-07-28T00:42:11.880-04:00IEP & MeToday we had classes about educational law and IEPs. We're parents to one of the oldest kids at JTC this session so we've attended more than our fair share of IEP meetings. IEPs can be really stressful, but they don't make me nervous the way they used to. Through the years I've met some great contacts and found some great resources to help and I've also found the courage to ask (nicely) for what I think Noah needs to get a FAPE. School districts can't read your mind, so if you don't ask then it's not going to happen. Here are a few of my favorite online resources:<br /><br /><a href="http://www.wrightslaw.com/">Wrightslaw:</a> This website is really great at explaining the federal laws and can be helpful when you want something that you KNOW your child needs but the school hasn't done before. Finding just the right bit of law that supports your request can mean the difference between an easy conversation and a long fight.<br /><a href="http://www.doe.virginia.gov/"><br />Virginia DOE:</a> This website has a listing of all the SOLs by grade and subject which can be a big help in trying to come up with IEP goals. Under the special ed. section there are also guidelines for working with kids with various disabilities, which in my experience the school districts are not particularly familiar with. I imagine that other states also have similar websites.<br /><a href="www.imdetermined.org"><br />I'm determined:</a> I'm a big fan of this VA DOE initiative that teaches self-determination skills and gets kids involved in the IEP process at a young age.<br /><a href="http://www.handsandvoices.org"><br />Hands and Voices:</a> This website is a great resource for families of deaf/hoh kids no matter what communication modality they choose. There are lots of great articles about everything from eligibility to mainstreaming and the "pop up IEP" can be really helpful if you're not getting the answers you want from your school district.<br /><br /><a href="http://www.speakingofspeech.com/IEP_Goal_Bank.html">Speaking of Speech:</a> For some reason I always struggle the most with coming up with speech goals for Noah. The IEP goal bank on this website isn't particularly navigable, but it is fairly exhaustive - just what I need.<br /><br /><a href="http://nationaldb.org">DB Link:</a><a href="http://nationaldb.org"> </a>Anything and everything you need to know about deaf-blindness can either be found of this site or using the links contained on it. It's great for educating IEP team members who just don't grasp the implications of a dual sensory impairment.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com3tag:blogger.com,1999:blog-1199348511572134237.post-1667326426608062292010-07-26T22:41:00.004-04:002010-07-26T23:21:34.417-04:00Take Me Out to the Ballgame (and other language opportunities)Besides all of the wonderful care Noah is getting from his teacher and SLT, just being in a new place has done amazing things for Noah's vocabulary. Walking from the apartments to school each day Noah sees palm trees, an emergency phone, a security keypad, scaffolding, and a homeless man. Each new experience is an opportunity to learn more language.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_NsfCvKqAjX8/TE5JMtZk4AI/AAAAAAAAA3Q/KHlxAtdAQ4o/s1600/IMG_7378.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="http://3.bp.blogspot.com/_NsfCvKqAjX8/TE5JMtZk4AI/AAAAAAAAA3Q/KHlxAtdAQ4o/s400/IMG_7378.JPG" alt="" id="BLOGGER_PHOTO_ID_5498412677760081922" border="0" /></a><br />After the first week at JTC we headed to Disneyland for a day of rides and meeting some of Noah's favorite characters. There wasn't a whole lot of new vocabulary to learn (since he already knows everything there is to know about all the Disney movies) but he really enjoyed conversing about some of his favorite topics with many of the cast members there.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_NsfCvKqAjX8/TE5JMF1KNDI/AAAAAAAAA3I/tfswDwWqgWI/s1600/IMG_7431.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="http://3.bp.blogspot.com/_NsfCvKqAjX8/TE5JMF1KNDI/AAAAAAAAA3I/tfswDwWqgWI/s400/IMG_7431.JPG" alt="" id="BLOGGER_PHOTO_ID_5498412667138356274" border="0" /></a><br />Thanks to a very generous John Tracy donor, Noah learned a ton of new language at his first baseball game. He is now quite the Dodgers fan and has been singing "Take Me Out to the Ballgame" and "We Will Rock You" quite regularly. It was hard for Noah to see the action of the game, but that just made him more eager to learn new language so that we could describe things for him.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_NsfCvKqAjX8/TE5JNN8aM8I/AAAAAAAAA3Y/dccOItE-tNU/s1600/IMG_7441.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="http://3.bp.blogspot.com/_NsfCvKqAjX8/TE5JNN8aM8I/AAAAAAAAA3Y/dccOItE-tNU/s400/IMG_7441.JPG" alt="" id="BLOGGER_PHOTO_ID_5498412686496117698" border="0" /></a><br />We spent much of this past weekend at two of the museums in Exposition Park. At the Natural History Museum Noah learned all about camouflage and mimicry during an "animal talk" and had lots of practice with his listening skills as I described the upcoming animal for him to guess in the galleries. He was really good at guessing most of the standard animals but needed pretty detailed hints before he was able to guess others (apparently Noah best knows opossums for lying dead on the side of the road).<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_NsfCvKqAjX8/TE5JN_Hnm_I/AAAAAAAAA3g/OTyA8k2wPs0/s1600/IMG_7449.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="http://3.bp.blogspot.com/_NsfCvKqAjX8/TE5JN_Hnm_I/AAAAAAAAA3g/OTyA8k2wPs0/s400/IMG_7449.JPG" alt="" id="BLOGGER_PHOTO_ID_5498412699696471026" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_NsfCvKqAjX8/TE5JOLLhB6I/AAAAAAAAA3o/GQ9Dw8xkmSA/s1600/IMG_7467.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="http://2.bp.blogspot.com/_NsfCvKqAjX8/TE5JOLLhB6I/AAAAAAAAA3o/GQ9Dw8xkmSA/s400/IMG_7467.JPG" alt="" id="BLOGGER_PHOTO_ID_5498412702934042530" border="0" /></a><br />The best part of the California Science Center for Noah was definitely the dress up rooms. He used some of his emerging conversational skills while playing "TV studio" "rocket" and "forest" with other kids. Noah also learned lots of new vocabulary thanks to the "Ecosystems" exhibit. There were so many hands on things to see and do and he loved every minute of it.<br /><br />We're now into our final week at the JTC and I'm wishing we could stay longer. I can't imagine where Noah would be now if he had spent the last 3 years at a school like this one, and I know that I will be a better parent and advocate because of the things I've learned. I'm forever grateful to Mrs. Tracy for her vision and for all of the donors who keep the programs running.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com3tag:blogger.com,1999:blog-1199348511572134237.post-73349420600756203732010-07-14T08:51:00.004-04:002010-07-14T09:20:48.241-04:00John Tracy Clinic<p align="left"><a href="http://3.bp.blogspot.com/_NsfCvKqAjX8/TD25Su6JqGI/AAAAAAAAA3A/G0fWa93ABl0/s1600/jtc1.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 300px; DISPLAY: block; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5493750851942590562" border="0" alt="" src="http://3.bp.blogspot.com/_NsfCvKqAjX8/TD25Su6JqGI/AAAAAAAAA3A/G0fWa93ABl0/s400/jtc1.jpg" /></a><br />We have completed two days at the JTC summer program so far, and it is so worth all the hassle and the stress involved in preparing to travel cross-country while moving. I highly recommend it to anyone thinking about going, but start saving now. The program is free, but 3 weeks of travel can get pricey. </p><div align="left">Noah is quite enjoying his class and keeps tabs on where everyone is at all times. You can't go see the SLT or audiologist without Noah informing the teacher that you're missing. He loves his new classmates but I'm wishing they all lived closer. We might have to plan future trips to Denver, Dublin, and London after we're done here. </div><br />My first happy mommy tears came yesterday when the teacher told me about Noah and another student playing on the playground talking back and forth on Monday. That pragmatic language is always a struggle for Noah, and hearing about a successful peer conversation on day #1 was amazing.<br /><br />So far the parent classes are fairly basic in terms of what I know, but I think Brian is probably learning a lot. I'm looking forward to some of the later topics, and right now am totally enjoying hearing other family's experiences and learning from them. Day #3, here we come!Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com5tag:blogger.com,1999:blog-1199348511572134237.post-31667270357303068452010-07-02T15:57:00.005-04:002010-07-02T16:21:02.351-04:00No teefs!<a href="http://4.bp.blogspot.com/_NsfCvKqAjX8/TC5EtbsascI/AAAAAAAAA2w/48L_xcfcCKA/s1600/no+teeth.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 300px; DISPLAY: block; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5489400543130071490" border="0" alt="" src="http://4.bp.blogspot.com/_NsfCvKqAjX8/TC5EtbsascI/AAAAAAAAA2w/48L_xcfcCKA/s400/no+teeth.jpg" /></a><br />Yesterday started as an ordinary day. Noah woke up way too early, got his reflux <span id="SPELLING_ERROR_0" class="blsp-spelling-error">meds</span>, his ears, and a fresh pull up and headed downstairs to stare at the blank TV screen, willing it to play cartoons. As is also typical at some point in the morning he fell down. He doesn't have the greatest balance or much peripheral vision and he enjoys spinning in circles, so falls are fairly common. They're more frequent later in the day when his muscles get tired and his gait gets wonky, but they do still happen in the morning. He's rarely upset when he falls, and it's not at all uncommon for a new bruise or scrape to show up with little fanfare.<br />I remember him falling. He was a bit startled and headed to daddy for a hug before going over to read a book. About 10 minutes later as I was helping Noah to get dresses I pulled his hand out of his mouth and noticed that his fingers were bloody. Further inspection showed bleeding and bruised gums, one tooth that was very loose, and another that was loose and not in it's normal position. After talking to the dentist it was agreed that he did need to be seen but that it could wait until after <span id="SPELLING_ERROR_1" class="blsp-spelling-error">VBS</span> (which Noah didn't want to miss).<br />The dental appointment was traumatizing as ever, but Noah was very brave. He cried uncontrollably the entire time but stayed as still as possible and tearfully agreed to cooperate. An x-ray showed that Noah's roots were barely there, probably indicating that this fall was the final straw in a long line of fall related tooth trauma, so out came the teeth. Noah now has lots of presents and a little yellow treasure chest with his two teeth in it. We weren't quite ready for introducing the tooth fairy, but it's just as well because I think it would break his heart to have to give up his treasure. Hopefully next time Noah can lose his teeth in a more natural manner.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com1tag:blogger.com,1999:blog-1199348511572134237.post-9094264067671251842010-06-27T08:36:00.002-04:002010-06-27T08:52:58.065-04:00It finally happened...<div><a href="http://3.bp.blogspot.com/_NsfCvKqAjX8/TCdGIeH4SCI/AAAAAAAAA2g/IhrLaOCRie8/s1600/noahandsimon2.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5487431782313248802" border="0" alt="" src="http://3.bp.blogspot.com/_NsfCvKqAjX8/TCdGIeH4SCI/AAAAAAAAA2g/IhrLaOCRie8/s400/noahandsimon2.jpg" /></a><br />Gross and fine motor skills are not Noah's strong point. He's always been delayed, and it seems that the older he gets the more delayed he becomes. Yesterday Noah's cousin came for a visit and it was apparent that in many ways he is as advanced, if not more so than Noah. He was better able to tackle playground equipment, better able to manipulate toys, had better posture, and while Noah clearly has a larger vocabulary, a greater variety of sentence types, and just more to say in general some of Simon's sentence structures ("Simon wants the ball") were eerily similar to Noah's. I knew this day would come, and it's not as traumatizing as I thought it might be. It's still a little sad, though. At least Noah's still a little bit bigger than his almost 3 years younger cousin. That's going to be a hard day, I think. </div>Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com1tag:blogger.com,1999:blog-1199348511572134237.post-26679148315005112262010-06-15T13:58:00.004-04:002010-06-15T16:41:22.059-04:00ScarsToday Noah noticed one of his scars and asked about it.<br />Most of Noah's scars don't bother me. The little white spots on his hands, feet, ankles and arms are a reminder of how hard he fought and how much he made it through. But then there's the red scar on his one cheek not really noticeable to anyone but me from when he coded the first time and in their rush to extubate they ripped all the skin off his cheek. I don't like that one. The scar he asked about today is large and I remember the look of pain on his face when I came in for a visit to find that his IV had given out and medication was burning a hole in his arm without the nurse noticing. I still feel sick to my stomach when I think about it.<br />Noah will hopefully ignore his scars the way I ignore my birth marks. I forget they're there until someone asks about them. Maybe as a little boy he'll be proud to have more scars than all his friends? Who knows. Thankfully he doesn't have to carry the memories of how he got them. He doesn't remember the painful experiences, even if he's still daily affected by them.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com4tag:blogger.com,1999:blog-1199348511572134237.post-40027613990842633232010-06-01T12:11:00.004-04:002010-06-01T22:18:25.856-04:00TestingThe IEP is done, and so is all the testing that goes with it. I'm sometimes not sure how much I believe test results. None of the tests are standardized for deaf-blind kiddos anyway. But I think things are fairly accurate this time around. I have been told that the age equivelant scores aren't the best ones to look at, but I'll take what I can get for now. Here's the deal...<br /><br /><br /><strong>Sensory Profile:</strong><br />Noah scored "more difficulty than others - probable difference" in the visual and behavior sections and "much more difficulty than others - definite difference in the auditory, movement, and touch sections. He had a definite difference with registration and seeking and a probable difference with sensitivity and avoiding. If you don't know what any of that means, be thankful. Sensory issues are not fun.<br /><br /><br /><strong>Sensory processing measure:</strong><br />Noah didn't score typical in any area. He scored "some problems" for social participation and "definite dysfunction" for vision, hearing, touch, body awareness, balance and motion, and planning and ideas.<br /><br /><br />I think there is no doubt based on these results that Noah still has pretty significant sensory issues, but surprisingly this is actually a huge improvement from where he was a year or two ago. His OT made tons of sensory recommendations (in addition to the huge AT workup she did a few months back). She definitely is a keeper as a therapist and it stinks that we'll lose her when we go to the new school district.<br /><br /><br /><strong>CASSLS test (simple sentence):</strong><br />36-42 months for language structure and use<br />30-36 months for use of questions<br />24-30 months for conversational skills<br />4.5-5 year old for listening skills (using the complex sentence test)<br /><br /><br /><strong>Meaningful Auditory Integration Scale:</strong><br />40 out of 40<br /><br /><br /><strong>TACL-3</strong><br />4 years 3 months vocabulary<br />5 years 3 months grammatical morphemes<br />3 years 9 months elaborated phrases and sentences<br /><br /><br /><strong>Bracken Basic Concepts Scale</strong><br />4 years 8 months school readiness scale<br />3 years 3 months direction/position<br />3 years 9 months self/social awareness<br />3 years 4 months texture/material<br />less than 3 years quantity<br />3 years 7 months time/sequence<br /><br /><br /><strong>TOLD-P</strong><br />less than 4 years picture vocabulary<br />5 years relational vocabulary<br />6 years oral vocabulary<br />4 years 6 months syntactic understanding<br />5 years 3 months sentence imitation<br />less than 4 years morphological completion<br />could not test* word discrimination<br />7+ years phonemic analysis<br />less than 4 years word articulation<br /><br /><br /><p>* This test involved Noah stating whether words were the same or different. While he was able to accurately repeat each word pair (indicating that he heard the differences) he doesn't yet get the concept of "same" and "different" so he wasn't able to answer the questions accurately.<br /></p><p>Notes from Noah's therapist: Noah is an excellent user of his cochlear implants [yay!] and auditory skills are his strength. Noah demonstrates the unusual pattern of a significantly stronger expressive vocabulary than receptive vocabulary. Vocabulary items related to descriptors are particularly challenging, and this is largely attributed to Noah's limited vision.<br /></p>Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com1tag:blogger.com,1999:blog-1199348511572134237.post-984250382654150102010-05-29T07:58:00.002-04:002010-05-29T08:04:52.903-04:00ConversationIt's so much fun now that Noah is starting to learn how to have conversations, but little boys talk about the weirdest things.<br /><br />Noah (as we pull into a parking lot): Where are we?<br /><br />Mom: We're at Lowe's.<br /><br />Noah: I like to ride in the race car at Lowe's, but no puking!<br /><br />Mom: I like the race car shopping carts too.<br /><br />Noah: Do you know what puke means?<br /><br />Mom: What?<br /><br />Noah: It means to throw up all your food on your clothes and have to put your pajamas on.<br /><br />Mom: Do you need to throw up?<br /><br />Noah: No thank you. I want to ride in the race car!Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com3tag:blogger.com,1999:blog-1199348511572134237.post-3167634353524579342010-05-20T10:13:00.004-04:002010-05-20T18:55:52.338-04:00a busy weekThis is what our week looks like next week:<br /><br />Monday: AV therapy<br />Tuesday: Closing on our new house! :-)<br />Wednesday: Field trip to the strawberry patch<br />Thursday: Company arrives for the weekend and annual IEP<br />Saturday: Painting party and then birthday party<br />Sunday: Noah turns 5!<br /><br />We were thinking of moving on Memorial Day, but we pushed it off to the weekend for the sake of our sanity.Emilyhttp://www.blogger.com/profile/03472927387632982961noreply@blogger.com2