Adventures in Preemie-sitting

Star Student (I knew this day would come)

2011-01-19T08:42:00.000-05:00

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.

Dear Teacher, (the real letter)

2011-01-02T15:32:00.000-05:00

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.

Dear Teacher,

2010-12-16T09:53:00.000-05:00

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.
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.
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!

Changes Through The Years

2010-12-03T09:48:00.000-05:00

At the top of my blog you can see the following statement that I wrote when I first started this blog:
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.

Things have changed a bit since then.

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.

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.
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.

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.

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.

Potty Training and other significant delays

2010-11-11T08:21:00.000-05:00

Yesterday 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.
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).
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.

It can just be a little depressing.

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.

Pre-Teaching

2010-09-20T10:44:00.000-04:00

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.

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.

Observation

2010-09-14T11:45:00.000-04:00

I'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!
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!
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.

Be Careful What You Wish For

2010-09-11T09:52:00.001-04:00

I 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!

Why I Feel Useless

2010-09-09T08:59:00.000-04:00

I'm a stay at home mom whose kid is gone 9 hours a day.

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...

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.

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.

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.

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.

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.

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.

I miss him.

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.

Progress Report, continued...

2010-09-07T08:33:00.000-04:00

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.
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.

Noah's first progress report

2010-09-03T16:46:00.000-04:00

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.

Vote for Noah's friends!

2010-08-26T09:05:00.000-04:00

Vote for Noah's friends Abby and Becca! 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.

Kindergarten

2010-08-24T13:06:00.003-04:00

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.

Glasses

2010-08-11T20:30:00.004-04:00

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!

Awww!

2010-08-09T12:57:00.002-04:00

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.

Oh It's Time to Say Goodbye to All Our Friends

2010-07-30T18:55:00.003-04:00

The bags are packed. The apartment is tidy. Our boarding passes are printed. Time to head home.
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.
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.
Thank you John Tracy Clinic - for everything.

IEP & Me

2010-07-28T00:08:00.005-04:00

Today 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:

Wrightslaw: 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.

Virginia DOE: 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.

I'm determined: 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.

Hands and Voices: 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.

Speaking of Speech: 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.

DB Link: 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.

Take Me Out to the Ballgame (and other language opportunities)

2010-07-26T22:41:00.004-04:00

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.

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.

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.

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).
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.

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.

John Tracy Clinic

2010-07-14T08:51:00.004-04:00

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.

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.

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.

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!

No teefs!

2010-07-02T15:57:00.005-04:00

Yesterday started as an ordinary day. Noah woke up way too early, got his reflux meds, 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.
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 VBS (which Noah didn't want to miss).
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.

It finally happened...

2010-06-27T08:36:00.002-04:00

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.

Scars

2010-06-15T13:58:00.004-04:00

Today Noah noticed one of his scars and asked about it.
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.
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.

Testing

2010-06-01T12:11:00.004-04:00

The 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...

Sensory Profile:
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.

Sensory processing measure:
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.

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.

CASSLS test (simple sentence):
36-42 months for language structure and use
30-36 months for use of questions
24-30 months for conversational skills
4.5-5 year old for listening skills (using the complex sentence test)

Meaningful Auditory Integration Scale:
40 out of 40

TACL-3
4 years 3 months vocabulary
5 years 3 months grammatical morphemes
3 years 9 months elaborated phrases and sentences

Bracken Basic Concepts Scale
4 years 8 months school readiness scale
3 years 3 months direction/position
3 years 9 months self/social awareness
3 years 4 months texture/material
less than 3 years quantity
3 years 7 months time/sequence

TOLD-P
less than 4 years picture vocabulary
5 years relational vocabulary
6 years oral vocabulary
4 years 6 months syntactic understanding
5 years 3 months sentence imitation
less than 4 years morphological completion
could not test* word discrimination
7+ years phonemic analysis
less than 4 years word articulation

* 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.

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.

Conversation

2010-05-29T07:58:00.002-04:00

It's so much fun now that Noah is starting to learn how to have conversations, but little boys talk about the weirdest things.

Noah (as we pull into a parking lot): Where are we?

Mom: We're at Lowe's.

Noah: I like to ride in the race car at Lowe's, but no puking!

Mom: I like the race car shopping carts too.

Noah: Do you know what puke means?

Mom: What?

Noah: It means to throw up all your food on your clothes and have to put your pajamas on.

Mom: Do you need to throw up?

Noah: No thank you. I want to ride in the race car!

a busy week

2010-05-20T10:13:00.004-04:00

This is what our week looks like next week:

Monday: AV therapy
Tuesday: Closing on our new house! :-)
Wednesday: Field trip to the strawberry patch
Thursday: Company arrives for the weekend and annual IEP
Saturday: Painting party and then birthday party
Sunday: Noah turns 5!

We were thinking of moving on Memorial Day, but we pushed it off to the weekend for the sake of our sanity.

Happy Mother's Day!

2010-05-09T07:12:00.004-04:00

Being a mother is not easy.

I visited my baby in the NICU for the first 186 days of his life (3 hours away for most of that time), and then had to give him back to the PICU 3 days after he came home.

I watched my baby code twice and made the decision of whether he should live or die many more times than that.

I sat in a waiting room hoping for a good outcome for 4 different surgeries. Would he live? Would he see? Would he hear?

I have (often laboriously) fed my child for the past 4.5 years, many times only to see that hard fought meal come right back up again.

I have driven thousands of miles taking my child to therapies that he needed that couldn't be had locally and then spent many many hours working on therapy homework and making it seem like play.

I have gone to numerous conferences, some far away, to learn more about how to better parent the mystery that is a verbal deaf blind child.

I have done everything for my child, but sometimes I forget about me.

Take today and do something just for you!

Happy Mother's Day!

moving update

2010-04-28T09:39:00.002-04:00

We have a contract... the school has been notified... my house is full of boxes... I feel like I'm losing my mind. I guess that means it's official!

The SPED director and principal have both said Noah can finish out the school year even though we'll probably move a week or two earlier. I've e-mailed the new county's SPED director, but haven't gotten a response yet. I'm hoping that she doesn't blow me off since Noah's not starting 'til August, because it takes a lot of work to get ready for Noah's arrival.

In other news, our AV therapist is doing lots of testing on Noah. I don't have an official report yet, but the results have been interesting to me. On the TOLD P-4 Noah's subsection age equivelant scores ranged from <4 to 7+. He's got really strong strengths, but some major weaknesses too. On another test that he's doing now, he got a school readiness age equivelant of 4 years 7 months. That's only a few months behind his current age, and if we were still correcting his age for prematurity would be right on the mark. What's interesting is that when you look at the subtests he scored very high on the letters, colors, shapes, and numbers, but only got 4 questions correct on the size comparison section. That's pretty much how it is... What he's good at, he's really good at, but his deficits are pretty significant. Hopefully the JTC will know what to do with him, because no one else seems to!

Moving & Schools, etc.

2010-04-06T08:21:00.004-04:00

As if we don't already have enough going on, our landlord decided to "do something different with the house" so we have to move by June 30th. Yes, that's 10 days before we're leaving for California - it's going to be a wild and crazy spring/summer! We're hoping to buy a house (yay!) and have been looking at various places.
When we moved to our current location, "good school district" was not even on the radar. I was teaching at a private school and my husband worked at the same school. There was no reason to expect that all of our children wouldn't enjoy the free tuition at that same wonderful private school. Now it matters a little bit more.
Our current school district is small, and fairly rural. There is no teacher of the deaf at all in the county, so they contract with one from another county. This is in my opinion only minimally effective, as evidenced by the fact that our OT was the one who saw the need for an FM system for Noah, and I was the one who notified that HI teacher, after realizing that no one else even considered that that might be helpful. Other than that, though, they've really been very good for us. Personality differences aside, everyone is really great to work with. We have a great team, who I feel really cares about Noah and getting him what he needs, and I couldn't be more happy about the K teachers that he would work with next year.

There are two other districts (besides this one) we have look at houses in, both of which are quite a bit larger and more suburban. They both have numerous HI teachers, along with the other services that we are already receiving (PT, OT, speech, vision, and O&M) but there is no gaurantee that the individual practitioners would be as top notch or as willing to work with us as our current location. Also, because the districts themselves are quite a bit larger, there's a lot more beaurocracy to deal with in order to get things done. Is it worth it to exchange the one service we want for all of the good things we already get? I just don't know. It's all a bit of a gamble, really. Any kind of change (even just moving down the street) is going to be very stressful for Noah, but the summer before kindergarten does seem the ideal time to make a change if one is going to be made. I guess we'll see what comes of it.

My Noah

2010-03-31T09:40:00.004-04:00

Noah's never been normal. He's always done things his own way and in his own time. He's lived through things that should have killed him and he's met milestones that the experts said he would never meet, but he's just never been normal.

We often hear from people things like "How can he _____________? He can't even _________________!" Often times the comments are ignorant, things like "He can speak, so he should've been able to hear me." or "He saw that, so he should be able to see this." and in that case somebody needs a bit of an education. But sometimes you just have to admit that as little sense as it makes, Noah's strenths and weaknesses are what they are.

Noah is reading at about a 1st or 2nd grade level, but most of my friends' 1 year olds have surpassed Noah in feeding skills. How is that possible? Well, chewing and reading just really aren't all that related. Although most kids can chew before they can read, there's not any direct link between those 2 things.

But sometimes the skills ARE related and Noah can do a complex skill, but not the seemingly easier one. For instance, Noah is able to repeat back a long sentence, but has difficulty with a shorter string of words. How is that possible? After much confusion we've figured out that Noah can recall the sentence because he's using his comprehension skills, but with just the list he can't bring that strength into play.

Or how about this... In AV therapy this week we were having to guess a hidden animal by asking questions about it. When it was my turn to guess Noah was able to answer all of the open ended questions about his animal correctly (where does it live, what does it eat, what color, etc.) but if I asked a yes/no question he got stuck every time. So for instance if I asked him "Where does the animal live?" He could correctly tell me "the jungle". But if I asked "Does the animal live in the ocean?" he couldn't tell me "no". Even when we ask those questions back to back, it goes something like this...

Where does the animal live? the jungle
Does he live in the ocean? yes
I thought you said he lived in the jungle? yes
Which one? Does he live in the jungle or the ocean? The jungle!

Sigh.

Maybe sometime I'll understand all his little quirks and why he is the way he is. In the meantime he just is what he is: my Noah.

Stuff

2010-03-26T18:54:00.002-04:00

We're deep into the planning process for our summer trip to the John Tracy Clinic. The more I'm thinking about it, the more overwhelmed I am by the number of things we will have to take with us.
Remember those first doctor appointments after the NICU when I had to always bring a friend because Noah and all his stuff (O2, monitors, feeding pump, diaper bag) couldn't all be carried by one person? When we got rid of the feeding pump I typically tried to do it myself, although not always successfully. I'm surprised the ENT even made us go through with the ABR after that appointment when I grabbed the monitors with the wrong arm, disconnected everything, and sheepishly walked back with my (still sleeping) baby and two different alarms blaring. Boy am I glad those days are over! Even so, just getting ready for Sunday School still involves two bags.

At any given time we typically carry the following:
- food for the amount of time we'll be out of the house, including one extra meal and some extra milk in case a "do over" is needed
- Ikea plastic spoons and one of the few types of straw cups that Noah likes
- bibs, cloths for face wiping or mopping up messes, and "pukeys" (aka barf bags)
- a few books or small toys for feeding rewards
- some type of seating for good posture while eating (either a car seat, stroller, or a booster chair depending on the situation)
- whatever medications will be needed in the time period we'll be out
- Thick it and any calorie additives that haven't yet been added to the food/formula
- a change of clothes (two if we'll be out all day)
- pull ups, and wipes
-stickers for potty rewarding
- extra batteries and headpieces
- Mr. Cane
- a dome magnifier
- a hat in case of unexpected rain

So what do you take with you when you go out?

Cafeteria Lunch

2010-03-12T15:39:00.006-05:00

Yesterday at the grocery store Noah asked me when he could buy lunch in the "cafe-too-ia" like all the other kids. Noah loves food. He likes to look at it, smell it, and talk about it. Sometimes he's ok with touching it. Eating, not so much. I don't mind this most of the time. I'm more than happy to let Noah lick all the chocolate off a thin mint or practice putting green beans on a fork when we have them with dinner. I'm even ok with ordering an overpriced applesauce side dish at restaurants when we go out to eat so that Noah can feel like a part of the group. But for some reason I balk at this one. I wouldn't mind letting Noah buy lunch occasionally if it was something that he would actually eat (like a la cart applesauce, for instance), but paying for the priviledge of letting Noah look at the cafeteria food seems a bit ridiculous to me. I just can't see spending money on that.

Concept Development at the Opening Ceremony

2010-02-12T21:08:00.004-05:00

"It's a star." (Nope, it's a maple leaf.)
"It's kind of like a picnic." (Those are Canadian Mounties carrying a flag.)
"It's to sleep on a bed" (They are going to hang it on a flag pole.)
"She's singing Old Mary Mack." (It's called "O, Canada".)

When you don't see so great and you don't hear so great, sometimes it's hard to get the whole picture. Noah's constantly making connections, but they're not always the right connections. It's hard for him because he wants to understand it so bad. We'll get there, Noah!

Preemie Teeth

2010-02-11T13:31:00.006-05:00

I've added a new link in the sidebar about dental problems in preemies. Noah deals with the following dental issues:

1. Intrinsic staining: this is a nice way of saying that his teeth are mostly green with a bit of yellow closest to the roots, and there's nothing we can do about it. The most probable theory is that this was caused by his liver issues in the NICU, although another likely theory is that it was caused by a medication.
2. Enamel hypoplasia: this means that Noah doesn't have enough enamel on his teeth, which can cause all sorts of problems. The biggest concern is cavities and so far we've avoided that. Noah does currently have a chipped tooth, though, and there isn't enough enamel on the tooth to adhere a filling or crown to, even if they did make crowns in green (which surprisingly, they don't).
3. Oral aversion: this isn't technically a dental problem, but brushing Noah's teeth can lead to vomiting, and that seems like a problem to me.
4. Severe GERD: again, this is not technically a dental problem. But when Noah's reflux isn't under control he vomits a lot, and that's not at all good for your teeth.
5. Tooth crowding: I'm not at all sure that this is preemie related but Noah's mouth is too small for his teeth. The teeth that are in there right now are super tight and while his gums are swollen enough to make his dentist think his 6 year molars are on their way soon, there isn't enough room for them to come it.

Over all our plan is to spend the next few years encouraging dental hygeine and hope that some of Noah's baby teeth last long enough for his adult teeth to come in. Depending on what kind of shape the adult teeth are in, we'll make a more long term plan that might include caps, crowns, braces, or even dentures. For now I'm just worried about making him grow so he has room for those 6 year molars.

20/80

2010-02-09T15:47:00.004-05:00

We had Noah's low vision assessment this morning and I'm feeling quite happy about how it went. Noah has had an estimated range of vision since he was about 8 months old and the eye doctor added ONH, exotropia and nystagmus to our ROP stage 3 zones 1-2 with plus disease diagnosis. We were told that based on how his eyes "looked" his vision would fall somewhere between 20/70 (legally low vision) and 20/400 (20/200 is legally blind). This range was enough to get us hooked up with the department of vision and enough to get us on the VA deaf-blind census, but it is really quite a broad range. Well today, we got a number! 20/80 is firmly in the "low vision" category - yahoo! Of course Noah is still considered deaf-blind whether he's legally blind or not (and is actually still probably legally blind based on his field loss, which is estimated at 10-20 degrees), but 20/80 with a significant field loss is WAY better than 20/400 with that same field loss. The real goal of the low vision assessment has little to do with getting an accurate visual acuity, but it's too exciting to leave out.

"Dr. Mike" as Noah called him, had lots of cool low vision tools. The one that will have the most immediate benefit is the dome magnifier. Noah's reading level is to the point that we're starting to run out of large print baby books for him to read. The dome magnifier will help magnify standard print so that it is accessible to him. He'll also try out a CCTV for the same reason, but it doesn't have the same kind of portability, so it's more for large textbooks or magifying what is written on the board at school than for pleasure reading.

Noah will also be trying out a monocular for viewing things at a distance (like when we don't want him 6 inches from the TV!). At first he wasn't too into it, but once he realized he was actually seeing things on the other side of the room he was super excited. When he's older he can get something like this, but they don't come in kids sizes so he gets to be a one eyed pirate instead. Arrrgh, me matey!

We may also try a screen magnifying program on the computer called Zoomtext, although somene that I talked to today recommended a different program called Magic instead. Right now he does fine with us just increasing the screen size on our home computer, but as he starts using a computer more at school, one of these programs will be useful. Also at home we will hopefully be getting one of these keyboards so that Noah can work on being more independent on the computer.

All of this stuff plus this and 2 of these makes for an awful lot of tools for one mom to keep track of, but seeing him learn new things makes it all worth it.

P.S. That picture is obviously not recent, but I think it's great for a post on Noah's vision loss because he's facing straight ahead to the camera and yet isn't looking at it with either eye. Who know visual impairments could be so cute!?

Speech, Language, and Listening

2010-01-29T09:27:00.006-05:00

Before Noah got his cochlear implant, we never had any question about his language acquisition. He just didn't have any. He understood that he could use his voice for communication thanks to our first awesome AV therapist and even tried to do that but that whole pesky concept of there being more than one sound in the English language was a bit beyond his abilities at that point.

After Noah's CI he took off amazingly, at least in terms of vocabulary. By the end of that first summer he was putting two words together and had a larger vocabulary than we could keep track of. However, while Noah is very good at putting words together to say what HE wants to say, answering questions/having a conversation with someone else is a bit more difficult. Whether that's because of his dual sensory loss, his preemie brain, or because we all became so enamored with the kid who went from no language to 100 word vocabulary in less than 2 months that we forgot to push the listening, I'll never know. I do know that his current AV therapist doesn't consider him to follow a "normal" pattern in his speech & language development (although she's refrained from labeling this a bad thing).

So here we are today. We recently had a progress report from AV therapy, and this is what was listed under "current skills and progress":

Auditory feedback/speech babble: Sentence level feedback in excellent. We are continuing to work on prosity as we work toward a more natural sounding speech pattern. Noah's speech is often at a low volume with limited variation in pitch. Given Noah's limited vision, his affect is less animated making inflection even more important for his communication partners, particularly peers.

Auditory discrimination/memory: Noah uses his strong internalized sense of language when enountering auditory memory tasks [if you give him a list he makes a story out of it to remember the items - super cute!] . Tasks presented as lists or series are more difficult to retrieve.

Auditory comprehension: While the bulk of Noah's vocabulary is acquired incidentally, descriptors require more deliberate attention, given visual impairment. Noah is still working to attend to and comprehend language that he overhears and context that is implied.

Expressive Skills: Noah has a mature vocabulary, though his use of syntax is less developed. Noah can initiate topics, but has more difficulty maintaining a topic selected by a communication partner, particularly a peer. Noah can provide information with details, though he does not yet give a cohesive narrative.

So there you have it. Not too bad for less than 3 years of listening, but still a ways to go before we have an effective communicator on our hands.

A Fun New Game

2010-01-12T13:02:00.002-05:00

Fortunately, for every "I can't believe I drive 2.5 hours for THIS!" AV therapy session, there are a number of good, beneficial sessions. This week we played an awesome game called "Look Who's Listening!". Noah really rocked the discrimination tasks as always and the auditory memory tasks were good practice without him noticing that he was learning. If only every thereapy session could go that well. I guess when you're dealing with kids more good that bad is probably a better goal. Anyway, check out that game!

A dishonorable discharge?

2010-01-06T17:25:00.002-05:00

Miss Carol says there's nothing else she can do.

Noah's making good progress with self-feeding - generalizing the skill could take months. He'll eventually learn to "scoop and lift" with his spoon. It'll just take time.

Noah's just not ready to chew. He is still at basically the same place he was back when he started the day program almost 3 years ago. We failed. Prematurity sucks.

We have made lots of progress in the last 3 years. Noah has gained 15 lbs and is on the charts for both height and weight. He used to vomit 10-15x/day, now it's just a few times a week. His reflux is finally under control.

When Noah started the day program in March of 2007 he drank 2.5-3 oz of formula 7 times a day (half of that was dreamfed). Now he drinks 4.5 oz of formula and eats 6 oz of pureed table foods 5 times a day. He has favorite foods! That's not something I ever thought would happen.

But he just won't chew. Can't chew? Who knows. We failed.

She says we're just taking a break. Give him a few months/years. When he's ready we'll come back and pick up right where we left off. I don't believe her. She's been saying "if" he chews instead of "when" for a long time now. She cried and hugged me when we left today. I don't think she believes he'll ever chew. I don't think I believe it either.

Prematurity sucks.

AV Therapy (aka banging my head against a wall)

2010-01-04T15:46:00.002-05:00

Overheard in AV Therapy today...

Therapist: "Look at all these hats for Mr. Potato head." [lets Noah hold each hat and then puts them just out of reach] "Mommy, which hat do you want?"

Mommy: "I want the red hat with the flower."

Therapist: "Noah, which hat would you like?"

Noah: "The blue cowboy hat"

Therapist: "Tell me in a sentence please."

Noah: "Do you want the blue cowboy hat?"

Therapist: "No thank you. Which hat do you want?"

Noah: "You [points to self] wants the blue cowboy hat. That one. [points to blue cowboy hat]

Mommy (modeling): "I want the blue cowboy hat, Miss Sarah." [Miss Sarah hands the correct hat to Mommy and then Sarah/Mommy takes turns modeling the expected script for a few minutes]

Therapist: "Which hat do you want, Noah?"

Noah: "Do you want the blue cowboy hat?"

Therapist: "No, thank you."

Noah (obviously frustrated): "Noah [points to self] wants the blue cowboy hat on Mommy's potato [points to blue cowboy hat that Mommy's potato is wearing] on Noah's potato." [points to still empty spot on his potato]

Therapist: "Noah, why don't you try to start your sentence with 'I want...'

Noah: "...the blue cowboy hat"

Therapist: "Use a complete sentence. 'I want...'"

Noah: "...the blue cowboy hat."

Therapist: "Say the whole thing. 'I want the blue cowboy hat.'"

Noah. "Yes! That one!" [points to hat]

Mommy: "Noah, if you want the blue cowboy hat, what do you need to say?"

Noah: "I want the blue cowboy hat."

(A similar conversation occured for each item that Mr. Potato head wears)

Getting this child to speak correctly is going to be the death of me.

The End of a Decade

2010-01-01T21:54:00.007-05:00

As we begin a new decade I find myself reminiscing about the last 10 years. In January of 2000 I was living in West Seneca, NY about to start my student teaching in Buffalo while my (future) husband was doing a semester abroad in London. I tried to find a picture from that time, but

I don't have anything that old scanned on this computer.

In 2003 I got married to my best friend and less than 2 years later (although it should've been a bit more) we became parents. I left my career as a school teacher to be a stay at home teacher to one very special little boy.

Way back in 2000 my dream was to teach in an inner city school for a few years while I got my masters and then go on to get a doctorate and do lots of fun educational research. Higher education dreams made room for a bit of real life, but I think my little research project is turning out well so far.

Maybe someday I'll revisit those dreams, but they don't seem as important to me as they once were. Funny how things change, isn't it?

Feeding: We'll Get There Someday!

2009-11-27T23:28:00.003-05:00

November 2008

November 2009

I look at these videos and think "Wow, he's made so much progress!". He really has worked hard this year. But then I remember that the difference between being able to take one bite semi-independently and taking 3 in a row with minimal prompting* takes no time at all for a normal kid, and happens a whole lot sooner than 4.5. Next year: chewing (I hope).

*minimal prompting for Noah = turning off the TV rather than a verbal cue.

November 17

2009-11-17T10:01:00.000-05:00

Today is Prematurity Awareness Day.

Four years ago today Noah had recently been transferred to HSC Pediatric Center's "Preemie Express" unit. He was on one liter of O2, having recently graduated from Vapotherm, and a Kangaroo pump fed him through his NG tube at 10 CCs/hour. Noah screamed constantly due to his uncontrolled reflux and Methidone and Ativan weaning. He was only calm when I was able to drive the 3 hours each day to be with him. Noah's hearing loss had progressed to the point that the only sound he responded to was the loud, low beep of an unhappy monitor, and his exotropia and nystagmus made it nearly impossible for him to focus his eyes. Months of heavy ventilator tubing weighing him down left Noah unable to turn his head from side to side. Noah was nearly 6 months old, but the only time he had been out of a hospital was for 1 medflight and 1 ambulance ride.

Although some preemies have an easier time than Noah, prematurity is never easy.

November 17, 2005

Noah's ABCs Photo Book

2009-11-10T11:29:00.001-05:00

Click here to view this photo book larger

Halloween Preparations

2009-10-30T17:26:00.003-04:00

Today we were practicing our trick or treating behavior. Last year Noah gave all the candy back and some people were a bit offended. I was hoping to convince him this year to at least keep all of the candy in the bag until we got home. We've been practicing chewing his tri-chew dipped in melted chocolate in feeding therapy and he has licked a few chocolate bars, but he's never ever even considered putting an actual food object in his mouth. Much to my surprise after he had trick or treated a few times he pulled out a 3 musketeers and asked me to open it. Here is the result...

Maybe next year he'll actually consume the chocolate.

Sleep

2009-10-27T08:45:00.004-04:00

When Noah came home from the NICU he slept 4 hours per 24 hour period, and not all at once. Three days later he was readmitted to the PICU and we were relieved to have a few days to catch up on sleep. Grandma saved us by getting an Amby hammock and things started to improve.

By the time Noah was a year old, he was sleeping about 12 hours per 24 hour period - a record. Unfortunately due to growth concerns we were still feeding Noah every 3 hours around the clock, so while he was getting more sleep, we really weren't (especially my saint of a husband who did the middle of the night feeds).

We were desperate and in need of sleep when Noah entered the intensive feeding program at Children's hospital. Slowly Noah came to a place where (with the help of Duocal and Polycal) he could consume enough calories during the day. It was so wonderful to finally after 2 years not have to wake our child to eat.

Things went ok for a while. Noah never slept as much as other kids his age, but he napped in the afternoons so I could get a break and would sleep 8 or 9 hours at night. Then he started school. Whether because of overstimulation or stress, some unknown allergen making his reflux worse, or just his age he started sleeping less, having trouble getting to sleep, and waking during the night.

When he finally gave up his daily nap last March things went from bad to worse. Some days Noah will sleep fine, but on others he's up for hours in the middle of the night. Screaming? No, not Noah. Singing. The first few times it was cute. Hearing my deaf child's sweet voice over the monitor was pretty great. But it's not so cute anymore.

I need a nap.

I pledge...

2009-09-25T09:33:00.004-04:00

Is he not the most adorable little boy ever?!

I wanted to post this video for 2 reasons:

1. How cool is it that he memorized the Pledge of Allegiance?

2. Aren't kids so funny? He was trying to make a joke by saying "The United States of A-Noah". He was obviously quite pleased with himself over it. Where do they come up with this stuff?!

School revisited

2009-09-25T09:03:00.002-04:00

Noah is finishing up his third week of school and things are actually going fairly well. So well, in fact, that I've had time to worry about next year.
Next year Noah will be in Kindergarten. Had he been full term we probably would've held him back a year since mid September is right on the border but he was born 16 weeks early.
As a reward for 7+ months of hospitalizations, a lack of vision, a lack of hearing, major fine and gross motor delays, virtually no feeding skills, and some pretty significant sensory issues we've decided to accellerate his schooling. It doesn't seem quite right to me, but neither does another year of preschool when he's ready academically for Kindergarten now.
Kindergarten is a whole different ball game than preschool. I've been looking at the Kindergarden SOLs for our state and I'm terrified. Absolutely scared out of my mind.
Because I think he can't learn the material? No, I know he can learn it. I'm terrified because I have to trust someone to effectively accomodate Noah's special needs so that he can access the information.
I visited Noah's mainstream class on Tuesday, and I was pleased with what I saw. He was doing the activity well and it actually wasn't as loud as I expected. They made sure Noah sat in the front for circle time, and they had his special scissors right there ready when they were doing a cutting activity. The table that he sat was at the edge of the classroom in a not overly visually stimulating part of the room, but not in such a way that he was isolated. While he didn't attempt to make small talk, the other kids did talk to him and try to include him in their group.
But then the teacher held up the paper so "everyone could see" as she gave the directions. Everyone except for the kid with no peripheral vision that is. According to his IEP he's supposed to get to manipulate all materials, which means he should've either had another copy of the paper to follow along with (ideally) or she should've held it down to reiterate her directions before or after she held it up. I have no doubt that it didn't even occur to her that it was a problem, and I have no doubt that the vision teacher will talk to her and she will always hand Noah his paper before she reads the directions from now on. But I can't always be there for every activity, and I can't think of every possible issue that could come up.
He missed the directions for an activity on Tuesday, but he already knew the information. There is so much in Kindergarten that he doesn't yet know, so missing out on even a small part of the instructional time is huge. He can learn if he can hear it and see it and stay on task and not get overwhelmed or distracted and if he has the background information to understand the concept, but those aren't exactly easy things to overcome. Scary. Terrifying. How many more years of this are there?

School

2009-09-01T20:45:00.002-04:00

One week from today Noah will be going back to school. He is very excited, but I'm a little stressed about the whole thing. I'm not sure what a great placement would look like for Noah, but his current situation is ok. Not great, but adequate. I suspect that some of my concerns are just personality issues with his teacher. She's a wonderful teacher, but we don't always see eye to eye on things.
What I like about Noah's school:
1. vision services - this is the #1 reason that we don't want to change things. His vision teacher is awesome! She's also dual certified in O&M which is a huge plus in our book.
2. related services - PT & OT rocks! It would be nice to have a speech therapist familiar with deaf students, but I have no complaints about his current ST.

What I don't like about Noah's school (the abbreviated version):
1. Lack of communication. Perhaps I was spoiled by working at a private school that expected parental involvement, but it would be nice to know the date/time of class parties before they happened rather than after. The only time the school seems to want to talk to me is when Noah is misbehaving.
2. Discouraged interaction. I would love to be the room mom, to volunteer for things, help out, and get to know the teachers, students, and other parents. I definitely got a vibe that that was not encouraged. Heck, I was told parents weren't allowed in the classrooms at all (the principal mentioned the school's open door policy at an IEP meeting partway through the year or else I'd still think that).
3. Punishment for disabilities. This isn't an overall every day issue, but there have been times when Noah has been put in time out for "not listening" or "not looking". Ummm... yeah. Deaf-blind, anyone? I get that Noah can cause trouble when he wants to, but if he can't hear/see what you're doing he can't listen/look at things. It would just be nice if they verified that before they punish him.
4. Lack of hearing services. Noah's hearing services consist of a (wonderful, which is the only reason it works) teacher of the deaf talking on the phone to Noah's SPED teacher a few times a month. I really wish there was at the very least someone at the school building who could see him in class and point out that he can't hear the teacher when he sits next to the screaming autistic child. He had hearing goals last year, but they weren't worked on until the end because he didn't have direct hearing services and no one wanted to take responsibility for them. Hmmmm....

What I'm nervous about..
1. Noah has a new 1 on 1 aid that has not been trained on his feeding protocols (yet - that's Thursday) and as far as I know can't tell a cochlear implant from a bluetooth headset.
2. Swine flu. Ok, sickness in general. Noah is aversive to soap and I'm not sure that they're particularly keen on pushing the issue. His lungs held their own fairly well this past year, but that was only minor illnesses.
3.Social interaction. Noah loves other kids and he tries sooo hard to play with them, but he doesn't get it right very often. He does have friends, but not at school. He'll be in a regular classroom for part of the day this year, and I'm not sure how that's going to go.

Summer

2009-08-25T08:22:00.002-04:00

Somehow I had the mistaken impression that when summer came things would slow down a bit and we'd have a nice break. Alas, summer is almost over and things are busier than ever. I find myself wondering how exactly we will fit 4 days of school into our already packed schedule.
Well as I posted in my last post we ended May with Noah's awesome birthday party at Chuck E. Cheese. He had a blast and it was the first time that I really saw him interacting with other kids without prompting. Most parents tell me that Chuck E. Cheese brings out the worst in their kids, but Noah's always been a little different.
June brought the end of the school year and an awesome vacation in Williamsburg. Noah absolutely loved the living history aspects of Historic Jamestowne, although he also enjoyed going to the pool each morning before breakfast, swinging at the playground with his cousin, and just generally hanging out with extended family.
July was busy with therapy. We had our drives to DC for AV therapy, drives to Richmond for feeding therapy, and ESY services on the other side of the county (OT, PT, Speech).
In August I actually got away for a bit, to the Low Incidence Disabilities conference at Penn State as well as a day workshop in Richmond dealing with kids & deafness. Grandma was happy to fly down for a few weeks with Noah, which made it much easier for me to get away. ESY was done, so we were down to just the AV therapy and feeding therapy, along with normal doctors appointments, mappings, etc.
For those of you who are thinking, "that's not so busy", don't forget that we have to spend 45 minutes 5 times a day working on feeding skills, one hour a day of "new ear" time plus additional set aside time working on localization and listening in noise, 30 minutes a day for handwriting/fine motor work, 20 minutes a day for Braille, 30 minutes a day for math skills, 30 minutes a day practicing balance skills/stair walking/etc., and now recently, sit with Noah at the potty for 10 minutes out of every hour. It reminds me of when Noah first came home from the NICU - after all of the required tasks are done, when are we supposed to sleep? In reality I don't spend all of that time on all of those things - who could? I just try to fit in some of each of those things into our daily routines (except for the potty, because not prioritizing that leads to puddles). Most of the therapists seem to understand, and the one that doesn't doesnt like me anyway so I tend to just tune out the lectures.
So, what have you been doing this summer?

Sad, take 2

2009-06-03T21:47:00.002-04:00

I really do have happy things to post about, I promise. Field day and field trips and birthday parties... it's been a whirlwind of fun. But alas, again this evening I'm sad.

I'm sad for a family that has been through so much trauma who now have to go through more.

I'm sad for a sick little girl who is likely very confused right now.

I'm sad for a mother who felt her only solution was to harm her child.

I'm sad for those of us whose children are sick just because they're sick who might now face a little bit more suspicion or questions - maybe we're causing our kids' issues too.

So sad.

Sad

2009-05-30T06:41:00.004-04:00

Today is Noah's 4th birthday. I should be happy, right?

This has been a year of realization of just how far behind Noah is and will continue to be. In some areas he's right where he should be, or advanced (heck, he's starting to read!). He continues to exceed expectations in so many areas and works hard to lean new things that are easy for other kids. But there are so many things he can't do, so many things that he'll never do.

Today on his birthday I can't help but think that those things are my fault. He was perfectly content inside me, happy as a clam, and they took him out almost 16 weeks early to save MY life. With the exception of ONH all of his delays and disabilities are a direct reult of his premature birth.

When he wakes up I'm going to be happy and excited for his birthday and we're headed for the amusement park, but for now I'm just sad. It's just not fair that such a great kid should have so many obstacles in his little life.

And yet, look at how far he's come...

To Whom It May Concern (a vent)

2009-05-20T21:15:00.003-04:00

To Whom It May Concern:
I'm sorry that changing Noah's CI batteries is an inconvenience at school. I'm sure that if you thought about it you'd realize how much more inconvenient it is for him to not be able to hear.

To Whom It May Concern:
If Noah was really able to intentionally throw a plastic lion at a classmate in order to hurt him, someone should notify the physical therapist. She has yet to have success with getting him to throw a ball with any type of aim - perhaps plastic lions would work better?
Punish Noah for throwing a toy, but don't assign malicious intent when none was meant.

To Whom It May Concern:
A few therapy appointments does not give you the right to tell a parent that they have royally screwed up their child's IEP. Please keep your opinion to yourself unless requested, particularly when it doesn't concern your area of expertise. It would certainly be nice if all OT appointments could take place in a mainstream classroom setting, but working on Noah's goal of removing his pants independently hardly seems like a group activity. Once you know me better feel free to berate me for being a bad advocate for my child, but you haven't earned that right yet.

To Whom It May Concern:
Jesus commands his disciples to preach the good news to everyone (Mark 16:15). That includes children with disabilities whether you like it or not. Meeting my child's spiritual needs is a mandate from God to his church. That doesn't mean that all Christians are called to that ministry, but it does mean that saying it's too much effort for little benefit or it takes resources away from the normal children is wrong. Get over it, because I'm not going away and neither is Noah.

s-p-e-l-l-i-n-g (aka my kid's a genius)

2009-05-14T08:59:00.005-04:00

Noah has for some time now been able to tell you the first letter sound of a word that he heard. He would spell his name "N-x-p-y-t-q-n-n-b" (or some other variation) because he knew that it started with the "n" sound and then had a bunch more letters. He's recently begun hearing more sounds in a word and is now pretty decent and getting most of the consonant sounds correct. Anyone care to guess what word he "spelled" in the picture?*

He also has quite an extensive sight word vocabulary. It's pretty impressive for an almost 4 year old, even if you don't take into account that the only print he has access to is 24 point font or larger (just the title in most books). He's also pretty good at guessing other words based on words he does know. So I did a little test with some refrigerator magnets, and here are some of the more interesting results. (the word-what Noah said)

just - jump

we-Wednesday

you-thank you

down-brown

up-SuperWhy

she-share

this-think

them-come

so-socks

like-bike

little-light

some-sorry

they-tree

be-bear

with-white

I didn't include any of the words he actually got right, which was basically any animal or color that I could think of plus the days of the week, months, etc. As a general rule if it's on the calendar at school, on any of his movies, or in the title of any of his books he knows it.

Since Noah loves spelling so much, yesterday for part of "new ear" time I got out scrabble and had him spell words that I said. He was so focused on finding the letters to spell that he didn't notice that he was listening. I might have to try that with the ling sounds too, since I'm always looking for new ways to trick him into repeating them.

* Hint: Noah's life revolves around his favorite activity, shopping.

2 "ears" are better than 1

2009-04-26T13:51:00.003-04:00

The official report from school is that Noah is actually holding conversations with them and responding to questions occasionally. He's had lots of issues with background noise in his classroom (don't even get me started on THAT situation) and he tended to keep to himself because, in my opinion, he didn't have a clue as to what was going on.
I got to see the improvement with two CIs first hand on Friday when I went to pick up Noah. He was able to hear his 1 on 1 saying goodbye to him and respond appropriately in spite of the facts that there were 2 classes of rowdy second graders in the hallway, he was facing away from her, and he was talking to someone else at the time. Wow!
He also seems to be doing well with just the new ear, although being the bad (read: busy) mom that I am, he hasn't been getting nearly the hour a day of new ear work that we had planned (closer to 30-45 minutes most days, and not at all yesterday). He's much more consistent about repeating the "s" sound from across the room than he was earlier in the week, has no problems answering questions about familiar books or topics, and seems to follow about 90% of conversation (only having trouble when I talk too fast or don't annunciate clearly). He is able to do all his ling sounds with background noise and although he still occasionally mixes up "oooooo" and "mmmmm" with each individual ear, he's getting them every time with the two ears together.
Overall I think he's a superstar and deserves some kind of award for his amazing brain-making-critical-connections abilities. I, on the other hand, am still a little overwhelmed at the have-to-keep-track-of-two-processors-that-aren't-interchangable-with-two-batteries-that-die-at-two-separate-times thing. Not to mention the get-less-sleep-and-do-less-housework-because-you-spend-all-day-Monday-going-to-Northern-VA-for-therapy thing. Maybe I should get an award too!?
I'd settle for a nap and a maid.

Slow down, Noah!

2009-04-18T20:39:00.002-04:00

Noah is moving way too fast for me with this new ear thing. I know that he's supposed to acclimate to this ear quicker than the old one, but not THIS quick. Our new AV therapist (the one we're starting with on Monday) said that for the first month or two we would be working on the "learning to listen" sounds from way back when. Getting him to turn to the "aaaaaaaAAAAA" sound, getting him to pick out the airplane from a group of toys when he hears it, etc.
So when we've been having new ear time (about 30 min./day right now), one of the things I've been doing (besides reading familiar books, singing songs, etc.) is I brought out all those old learning to listen toys. Day one when he picked the cow out when I said "moo" I was pretty impressed. Today not only was he hearing all of the learning to listen sounds, he was repeating them all correctly (no more robot talk - apparently we sound normal now). He was also able to answer simple questions about a familiar story after we read it ("What color is the fox?" - "orange", "Where was the rabbit sitting?" - "under the leaf", "What does a blue bird say?" - "tweet tweet").
I know he's not understanding things as well as with his other ear (obviously!) but he's picking up a whole lot more than I thought he'd be able to. Is that normal?

T Shirt

2009-04-18T16:52:00.006-04:00

Those of you who know Noah know that he likes to make his presence known. One of Noah's favorite things to do is to sing boisterously while shopping. We get a lot of looks and a lot of comments. Most often I hear "What's wrong with him?" so I've come up with a helpful response:

Seriously people, there's nothing wrong with him. He just likes to sing. And it's not exactly polite to say "What's wrong with him?" He CAN hear you, you know. Has it ever occured to you that you might be the one with the problem? Just thinking out loud...

CI #2, day 3

2009-04-17T11:07:00.002-04:00

Things continue to go well with Noah's new ear. He appears to be enjoying the extra sound he's getting very much. Yesterday at our second mapping he tested at 30-35 db in the sound booth and was able to repeat all the ling sounds. Yay! He does still think that we sound like robots when we talk if he only has the new ear on, but I imagine that will improve with time and therapy.
In the meantime he's trying to convince our cat that she should get some "new ears" from his CI surgeon. I guess he thinks she must be deaf too? She doesn't talk a whole lot, but she is a cat. I'm not so sure that cochlear implants would help with that.

2 Ears!

2009-04-15T21:19:00.003-04:00

Noah's second activation went much like his first - a whole lot of silence. This time instead of crying he just insisted that he watch the Teletubbies. Just like the first time, he has acclimated very quickly to his new ear. We hadn't even left Richmond before he was begging for a trip to the mall to ride on Mr. Potato Head. He seemed fine with that, so we went out to dinner where he serenaded the other diners with songs from PBS Kids. By the time we finally got home he was trying to replace the headpiece when it popped off and telling anyone who would listen, "I like having both 2 ears!"

Noah+change=bad news

2009-04-08T14:56:00.003-04:00

We learned today that:
1. our AV therapy center is closing in June and
2. they want Noah to see a different AV therapist for the next 2 months (his therapist was laid off in anticipation of the closing)

Last time we have to switch AV therapists it was a huge upheaval for Noah, and it was really rough for him at first. He loves that therapist now - he calls her his "gear friend" because she uses this gear toy to bribe him into repeating sounds.

Getting a new therapist along with a new ear and then losing that therapist after 2 months is such a bad idea on so many levels, so we're not gonna do it. (So there!) Instead, on Monday we're taking the lovely drive up to the Northern VA Chattering Children for a tour. If we think it's worth the (2 hours if there's no traffic) drive then we'll be starting up there as soon as possible. If we don't like it then I guess Noah's new ear habilitation is up to me.

I feel fairly confident at using AV principals at home. I mean the whole point is to indoctrinate parents so they live the AV lifestyle, right? It would be nice to have a bit of guidance, though. I guess in the long run it's better we just found out today, since I doubt we would've gone through with the bilateral surgery had we known a few weeks ago.

Any Advanced Bionics Experts out there?

2009-04-08T08:35:00.003-04:00

The other day Noah was playing on the bed and his magnet came off. If it falls forward down his chest he is able to replace it himself, and that is just what he did, except that because he was rolling around it fell forward on the left side (the unactivated side). Here's the weird thing... his processor beeps if it doesn't make a connection, but it didn't beep. Something didn't look quite right but as I was doing other things (in and out of the room) it took me about 10 minutes to figure out what. He wasn't acting like he couldn't hear (if the cable comes loose or the battery dies he'll grab at it and take off/replace the magnet again and again as if hoping to reboot himself), but he also wasn't really responding to sound (I tried the ling 6 after I figured out the issue). So did he just activate himself? I called the audiologist and all they said was "don't worry". I'm not worried, just confused. What's up with that? Also, since that time I've caught him on 3 separate occasions trying to put his magnet on the other side. Anybody have any experience with something like that? I don't know whether he's just interested to learn that he has a magnet on both sides of his head, or if he's actually getting sound from it. But why didn't it beep?!

TV test

2009-04-05T09:44:00.002-04:00

It looks like this latest CI surgery definitely destroyed Noah's last bit of residual hearing. It used to be that if we turned the TV up to it's loudest volume he would turn around excited to watch his show. We tried this morning - nothing. Will it be worth it to replace that little bit of real sound with a whole lot of bionic sound? I sure hope so because there's no turning back now. I guess only time will tell.

2009-04-04T19:12:00.002-04:00

Bilateral

2009-04-04T18:40:00.007-04:00

Well the surgery's done and things are starting to get back to normal. Noah once again had issues with vertigo, but this time he was too old to just stick in an exersaucer so I've been spending the last few weeks chasing him around the house to keep him from destroying his new ear before it even gets turned on. He's had some pretty good head bumps, but hopefully nothing that'll have any lasting impact! Activation day is a week from Wednesday so I guess we'll know then whether he's done any permanent damage to his "new ear".

Feeding Noah is miserable lately. Not surprisingly after two days of vomiting blood from the surgery and some extra nausea caused by the vertigo, eating was the last thing on Noah's mind. Noah's feeding therapist gave me a good pep talk this week, and I'm hanging in there, but it is definitely difficult right now. Some days I wish we just had a g-tube, but I don't know that that's the answer. I just wish I knew what the answer was!

I'll leave you with some surgery pictures and later I'll post a cute video of Noah telling me all about dinosaurs while we were playing at the botanical gardens.

The Day is Almost Here!

2009-03-12T20:33:00.002-04:00

This Tuesday is the big day! Noah is having his surgery for his "new ear". I'm so excited for what this is going to do for him, but I can't help but being stressed over the whole hospital thing. After fighting so hard to get Noah out of the hospital, giving him back doesn't exactly bring me warm fuzzies.
The surgery itself seems like it lasts forever, but the recovery last time was relatively quick. Noah will definitely be out of school next week, but will likely be fine to go back after that. Please keep us in your prayers this week!

March for Babies

2009-02-08T09:00:00.002-05:00

March of Dimes is not my favorite charity of all time. Sometimes their advertising annoys me. It seems to me that if all preemies turn out as well as the ones that they pick for ambassadors, why should we bother fighting prematurity? If all preemie moms are drug addicts who don't seek prenatal care, will more education about premature birth really help? If it's just a rough few months in the NICU and then life is normal, why bother?

So why do you now see a link to my March for Babies fundraising page on my blog?

Because all preemies don't turn out fine. Many of them, particularly the very early ones like Noah, end up with life long disabilities and March of Dimes wants to change that. They research treatments for things that can be debilitating for preemies like chronic lung disease, and they look for cures to many of the pregnancy complications that can cause babies to come earlier than they should. Lots of people think that if moms would just take better care of themselves, then premature birth would just disappear, but that's just not true. I wasn't a teen mother. I ate healthy foods, sought regular prenatal care, and didn't smoke or drink. And yet at 24 weeks I developed HELLP Syndrome and almost died.
But there's more. March of Dimes doesn't just try to stop premature birth, they also support families that are dealing with it. Noah started out at a wonderful local NICU where I felt loved and supported, but after two months he was transfered to a bigger regional NICU that could handle his surgical needs. I felt lost and alone. My support system was 3 hours away and I couldn't even figure out how to get to the hospital without turning around in a parking lot. Tthe family coordinator came to see me. She told me how to get to the hospital without getting lost, where to find the cafeteria, and invited me to a March of Dimes NICU Family Support event. Suddenly I wasn't alone anymore. The March of Dimes NICU Family Support program helped me get through that awful time when I was so alone.
So yes, the March of Dimes' approach sometimes really annoys me. When I see commercials on TV that tell me that if I would just get prenatal care my baby would be fat, healthy and normal I burn with anger at their insensitivity. But the fact is that both Noah and I would not have survived the NICU without them. And that it why I'm going to March for Babies.

Please donate to help me reach my goal! Click on the link in the sidebar to get to my donation page.

Bilateral Bionic Boy?

2009-01-21T18:55:00.003-05:00

If you'd asked me two years ago when we were preparing for Noah's first CI surgery, I'd have told you that there was no way that I would ever be interested in getting him a second CI. Choosing to send my son to the OR for an "unnecessary" surgery once was more than enough for me. It either would work or it wouldn't, and at least we tried. And yet today I find myself wondering "Is it better to schedule the surgery for the earliest possible date (March) or should we try to get him in over spring break in April?". In my mind it's not a done deal until they actually preform the surgery, but it sure looks like Noah is going bilateral after all.

Periactin

2009-01-13T22:07:00.002-05:00

Noah started Periactin on Thursday in an effort to increase his appetite and motivate him to eat. It appears thus far that it has the additional effects of keeping him from coughing, being congested, or vomiting. He took Periactin on Thursday and Friday with no vomit (two days in a row is a record!). We didn't give him any on Saturday or Sunday and he vomited both days, along with early Monday morning. Then we again started Periactin and no more vomit Monday or today (yes, that's right - almost 4 out of the last 6 days without any vomit). If this trend continues it could mean amazing things in terms of Noah feeling safe and comfortable around food, not to mention a huge decrease in laundry. Too bad he can't take it on the weekends.

Speaking of neglecting things...

2008-12-23T14:34:00.004-05:00

I may have missed my opportunity to post this, since Noah's recent illness has led to major feeding regression, but check out Noah's newest skill:

He's not nearly the expert that he seems in this video. The most he's done at home at any one meal is 6 bites independently, and those require coaching. But we now know he can do it, so it's definitely something we'll be working on once I get him to eat again.

Busy

2008-12-23T14:26:00.002-05:00

Noah has kept us occupied with numerous doctor's appointments, ER visits, and a slew of holiday engagements (I think he got invited to more parties than I did!). I didn't want to neglect to mention that we now have a NEW Teacher of the Deaf who actually has a clue about oral kids and cochlear implants. Unlike our old TOD I actually feel like she's interested in helping Noah to learn. I find that I don't really fit into any of the main philosophies regarding deaf kids so I never really totally agree with anybody, but I think she's a keeper.

How to drive a speech therapist crazy:

2008-12-08T18:38:00.005-05:00

1. show that you comprehend a question but never actually get around to answering it

2. sprinkle in a few nonsense words

3. change the subject

Food

2008-12-08T18:13:00.005-05:00

Yesterday Noah put a goldfish cracker in his mouth. Of course he took it out again without even attempting to chew or swallow it, but for a few seconds he had real food in his mouth. I never thought I'd see that happen!Of course only a few short hours later he was hysterical because someone tried to give him a wrapped candy cane. We'll get there someday. I hope.

Our feeding team is inspired to try new things so we've made some changes. Noah's Prevacid has been doubled from 15mg to 30mg and he now takes it in the morning instead of at night. The big difference that we've noticed so far is that now he throws up all over his bed each evening instead of his high chair or carseat in the morning. Anyone know why he might feel the need to vomit an entire meal approximately 12 hours after a dose of Prevacid?

We're also sampling EO 28 Splash in an effort to try Noah off of dairy. Thus far I've noticed a distinct lack of couching, retching, gagging, and congestion in my house. Lots of grimacing over the flavor, though, and a major increase in avoidance behaviors at meals. About the same amount of refluxing - that never changes. We still have 2 more flavors to try before the official test, so hopefully he'll fall in love with one of them.

If the increased Prevacid and/or the lack of dairy don't solve all of Noah's feeding issues, or next step will be to try Periactin. After that we may or may not try Neurontin. If that doesn't work I imagine they'll try to come up with this or that in an effort to look like they're doing something, but the fact that they've recently started to refering to "if" Noah eats real food as opposed to "when" makes me think there probably isn't a lot left to try. Not that it matters to me, really. I mean, pureeing food isn't all that much trouble. Id'd be nice if he'd feed himself, but we're actually making progress with that, so I don't imagine it'll be too many years. That'll be a day to celebrate!

Happy Halloween, a little late...

2008-11-07T11:50:00.006-05:00

I was a little busy recovering from surgery 'round about Halloween time, so I didn't get to post any pictures of my handsome pirate. Better late than never...

We started our halloween celebration with Trunk or Treat at church. Noah really liked walking around with grandma and seeing all his friends in costume. He was also happy to say trick or treat to all the people, but when they tried to give him candy he politely said "No thank you" and placed it back in the bowl. At the end of the two hour party all of the other kids had full bags and Noah had two lollipops and a bag of fruit snacks.

At Noah's school Halloween party they practiced trick or treating and his teacher explained to him that you were supposed to take the candy, but that if he didn't want to eat it he could give it to mommy and daddy.

He thought this plan was the best of both worlds. He got to dress up and say "trick or treat" to lots of people, but the threat of candy was removed. He was very eager to go trick or treating with daddy that night and not at all happy to be done. Crazy kid!

Services

2008-10-20T17:18:00.004-04:00

Today we had another eligibility meeting (in regards to PT/OT/Speech), and I'm happy to say that Noah qualifies for everything. Not everyone can say that their child gets OT, PT, Speech, Teacher of Vision, O& M Teacher, Teacher of the Deaf, and a one on one aid. I feel like I should be sending our neighbors thank you cards for paying their taxes or something.
At our meeting we also talked about assistive technology. They've ordered the Mangold Braille series and a Mountbatten Brailler for Noah, and we discussed many of the other options/ideas available. They wanted to give Noah one of those pager things that you get at a restaurant to hold in his lap at circle time or whenever so that they could page him when it was his turn to speak. I vetoed that idea. A little boy holding a lighted vibrating "toy" isn't going to eagerly listen while awaiting his turn, he's going to play with the toy. Silly people!
In Teacher of the Deaf news the school will be videotaping Noah and sending the tape to her so hopefully that'll help. I just don't see how it's possible to adequately serve a child who you've never met at all, let alone seen in a classroom setting. I'm definitely going to be pushing for some new or different services at our next IEP. It's just not working for me. (Although I'd be willing to stand corrected if this video tape thing works...)

School

2008-10-17T12:00:00.003-04:00

School is still a challenge. If it's not one thing, it's another. We're still not receiving the services that are on the IEP, and Noah is really struggling because of it. Noah is growing more and more frustrated at the work that they expect him to do: work that involves multistep directions that he doesn't understand, fine motor tasks that he can't yet do, and touching of items that are aversive to him. Noah does need to be pushed to experience things that he's not yet comfortable with, but if he's pushed too far things'll get worse instead of better. I just don't know what to do, and I'm weary of the battle. I know I just had a vacation, but I'm ready for another one.

P.S. I know that picture and this post are completely unrelated, but isn't it cute?

Preschool Logic

2008-09-30T19:20:00.003-04:00

Noah was walking around with a bubble wand around his nose. When I asked him what he was doing he said, "I'm blowing my nose."

What Noah's NOT learning at school...

2008-09-26T10:48:00.004-04:00

Noah understands that letters make sounds. He can usually tell you what letter sound a word starts with fairly accurately. Sure, he thinks that gym starts with a "j" and cracker ("cwacker") starts with a "q", but he's only 3! Noah also understands that you put letters together to make up words. I'm constantly finding things like this on my refrigerator.

Unfortunately he hasn't learned what letters go together to make up words yet. He sure likes to practice, though! There's a future spelling bee champ in there somewhere.

Crazy

2008-09-25T23:50:00.004-04:00

I'm going to see the surgeon tomorrow and I'm quite anxious. Not about the surgery appointment - it really is a relatively minor procedure if I do end up needing it. Nope, I'm anxious about about the place.
When I was 24 weeks pregnant I got the "flu" or so the on call OB assured me (who gets the flu in May?). After 2 days of dealing with the "flu" with almost constant pain, headaches and vomiting I went to camp out at the OBs office to get some answers. While when I first arrived they assured me that I indeed had the flu, a urine sample and a BP check later I was in L&D triage getting labs drawn and meeting with the perinatalogist.
The first time I went back for my yearly GYN appontment they put me in the same room where I went that day and by the time the doctor arrived I was a sobbing fool. The nurse thought I was crazy, but the doctor understood and just patted my knee soothingly until I calmed down. I was sooo happy when the practice finally moved to a much needed larger space - in another building.
Since that time I've done my best to avoid that building. I have my lab work done at the office on the far side of town rather that set foot in that building and deal with the memories. Too bad the only surgeon that my doctor recommends is in that same place...
One of these days I'll deal with my emotional issues surrounding Noah's birth. Years from now I'll look back and laugh and that awful feeling that I get in the pit of my stomach every time the phone rings, and maybe someday I'll stop running in alarm to his room whenever he sleeps later than I expect. For now I guess I'll just be grateful that I have a wonderful husband who answers the phone, checks that Noah is breathing before he leaves for work, and goes with me to appointments in that dreaded place. I might be crazy, but at least I'm loved.

Updates

2008-09-22T11:52:00.004-04:00

1. Noah no longer cries all day at school. He still cries if we leave him at church, but since he's moved up to the 3s and there's a new batch of nursery workers we've been staying with him each week to train them on the CI, what he can/can't see, etc.

2. Either Noah is super smart or his teacher is amazing. Probably both. He's currently a calendar expert and quite the meteorologist. The other day he was at the playground and the sun was glaring down at him. He looked at me and said, "Mommy, I need a cloud."

3. Pulmocort does make Noah vomit more than normal. Flovent doesn't. We really like Flovent.

4. Everyone at school has been absolutely wonderful, and for that we are so grateful. Unfortunately the HI teacher has yet to show up at school. I'm sure she'll be great too, if we ever see her. I'm going through appropriate channels and trying to be assertive but not nasty. We'll see how long that lasts.

5. Noah thinks our house in a jungle gym and is currently scaling the entertainment center in search of an elusive movie case that he thinks I've hidden on top. I actually have it with me, but that probably won't keep him from breaking his neck.

Happy Due Day, Noah!

2008-09-14T09:29:00.004-04:00

Three years ago today I baked a cake, stuck a "zero" candle on top, and shared it with all the other families at the Ronald McDonald House.
Noah celebrated the day by getting pulmonary hypertension and being revented.
I hate it when people tell me that God doesn't give you more than you can handle. He sure gave me more than my share! I've had my bitter days, but over time I've come to realize that He gave me more than I can handle for good reason. I'm one of those people who likes to handle everything myself. Since I'm in over my head I have to rely on Him.
Life would sure be different if Noah had been born today, but I'm not so sure it would be better.
Happy Unbirthday, sweet boy!

Mr. Cane

2008-09-12T13:04:00.005-04:00

Noah has a new best friend. His name is Mr. Cane.

Noah and Mr. Cane have been together for 3 days and already Noah can hold Mr. Cane on his own. Sometimes Mr. Cane gets stuck on something and ends up behind Noah and then he gets confused but we're working on it. Noah also doesn't tap much, but Miss Karen says Noah probably won't be a tapper since he has some vision. Mr. Cane will mainly help him with depth perception and identify him as visually impaired so he doesn't get beat up if he runs into someone.

Noah really likes Mr. Cane. Today when we were leaving school Mr. Cane made a loud noise when he hit the metal doorframe by the step to outside. Noah looked at Mr. Cane, said "It's a step." and walked down with no prompting. Thanks for your help, Mr. Cane. Mommy feels much better knowing that you'll be with Noah when she's not there.

Why I'm Stressed

2008-09-07T09:54:00.002-04:00

Noah cries all day at school and anytime at home that he thinks about school.
Noah's stress is making his eating a challenge again.
The word church makes Noah start sobbing.
I will probably be needing surgery sometime in the next few months.
As far as I can tell they don't make large print preschool Sunday School materials.
Whenever we're in the car Noah cries and begs us not to take him to school/church.
Pulmocort apparently makes Noah's reflux worse.
Noah has a new AV therapist and his AVT center just moved to a new building. The only reason this hasn't led to sobbing is that he doesn't know yet.

Deaf-blind is not the same as stupid

2008-09-06T23:24:00.002-04:00

For a very long time I wouldn't tell people that Noah was deaf-blind. It was like I could handle each of his issues separately but together they were too much. As I got more used to the idea, I was shocked that most people didn't believe me. I got comments like, "He can't be deaf, he speaks." or "If he's blind why is he reading a book?". Most recently it's Noah's academic abilities that cause people to question our wonderful doctors' diagnoses. Apparently deaf-blind preschoolers aren't allowed to know their ABCs, the days of the week, or the difference between a pentagon and an octagon. If they do know those things, obviously they can see/hear just fine.
Newsflash: Noah has some vision and a cochlear implant. Those things really help. And as for the days of the week, I have to blame Rachel Coleman and her catchy songs. I never even tried to teach him that, he just knew it one day.

Normal

2008-09-04T09:18:00.003-04:00

If it's so normal, why is Noah the only one screaming and vomiting all day long at school?

First Day Activities

2008-09-03T13:27:00.002-04:00

cry
walk the halls with your one on one aid
cry
ask for Mommy a lot
cry
have a productive 30 minutes of O&M Training walking around the parking lot looking at the different colored cars
cry
vomit
cry
refuse to eat lunch
cry
fall asleep 15 minutes before Mommy comes

First Day Pictures

2008-09-03T11:23:00.001-04:00

Transitions

2008-09-03T11:14:00.003-04:00

"Will there be shapes to play with at school?"
"I want to read a book at school today."
That was what Noah said to me as he was eating breakfast.

"I'm ready!"
That was what Noah said to his teacher when he got to the classroom this morning.

...And then he realized that Mommy wasn't staying.

We'd been trying to explain for weeks that Mommy would go home and Noah would stay at school, but he just couldn't fathom why I wouldn't want to be at a place as great as school.

When I was walking out of the building I saw him walking down the hall with his one on one, wailing and screaming to anyone who would listen, "I want Mommy to go to school too!"

It's Official!

2008-08-21T21:49:00.004-04:00

After jumping through many more hoops than is really necessary, Noah is finally completely registered for school. I've met his one-on-one aid, seen his classroom, and have an invitation to the open house. I've made nice with the principal, the secretary, and the classroom teacher. Everything's ready to go, except Noah. He's in a tizzy about all our recent routine changes and cries hysterically if I'm more than 3 feet away from him outside of our house. I'm trying to tell myself that he'll adjust, but I'm not so sure I believe it. I may end up going to preschool too.

Proud

2008-08-19T15:26:00.003-04:00

Today Noah said thank you without prompting when given a gift.
Just a moment ago he came up to me and said "Excuse me, Mommy. Could I watch the Wiggles please?"
If I don't get anything else right, at least I've managed to teach him to be polite.

A Week In Pictures...

2008-08-17T19:20:00.010-04:00

...and a movie.

Thank goodness for spare parts!

2008-07-26T11:42:00.003-04:00

Thirteen days after breaking his first pair of glasses Noah broke his second. He fell face first off of a bench at the zoo. It was fortunate that the glasses took the brunt of the damage (as opposed to his face). Not only that but the part he broke was not the part he broke the last time so we were able to scavange from the broken pair. Unfortunately he threw a tantrum bigger than any I'd seen from him when we took his broken glasses away from him. He kept screaming "I want to go to the glasses doctor!" over and over again. We ended up buying a back up pair so that we won't have to deal with that anymore. Now Noah has two pairs of glasses to break!

A New Milestone

2008-07-23T12:11:00.003-04:00

The other day at speech therapy Noah said, "I want the bears." In and of itself it's not a particularly amazing sentence for Noah, but considering that the jar of bears were about 6 feet away on a shelf it was pretty impressive, vision-wise. Not only that, but when the therapist said "What bears?" he showed off his newest developmental milestone, pointing.

I'm sure pointing is supposed to occur at a year old or so, but it's one of those milestones that Noah never really hit. Eventually our OT got Noah to point at big defined pictures in a book and declared it met, but he was never able to point at things that he couldn't touch (because if he couldn't touch it he couldn't see it). Hooray for glasses!

Signing Time

2008-07-22T15:55:00.004-04:00

When Noah was younger I got an e-mail from the local children's museum saying that Rachel Coleman from Signing Time would be coming to do a show. Noah wasn't yet signing (or speaking) but he loved to watch the Signing Time DVDs. I really wanted to take him but it was still cold and flu season, the flu was really bad in our area, and we were on lockdown. Fortunately, we have a second chance.

The best part is that the proceeds go to benefit an organization for families of deaf-blind kids like Noah. So if anyone is going to be in the Norfolk/Virginia Beach area on August 12 come check out a fun event and support a great cause.

29 days

2008-07-12T22:45:00.003-04:00

That's how long Noah's glasses frames lasted before he broke them for good. The first two times they were able to repair them, but this time there was no hope. I'm really glad we went with the optometrist with the best replacement warranty. I have a feeling it's going to get expensive after a while. Here's hoping frame #2 lasts a bit longer than #1!

Milk... It does a body good!

2008-07-11T15:43:00.004-04:00

At 3 years and 1 months:
your child is 29.5 pounds, and that is at the 22nd percentile for weight.
your child is 35.5 inches, and that is at the 6th percentile for height.

For a few minutes I'm going to ignore the research that says not growing between 0-2 and then growing like a weed is bad and be happy for my big, healthy boy.

Happy Independence Day!

2008-07-05T22:18:00.003-04:00

In honor of our country's independence, Noah decided July 4th was a good day not to vomit. There have been quite a few days lately where he hasn't vomited throughout the day, but bedtime Prevacid tends to bring up anything not digested yet. Yesterday he got his Prevacid as we were setting up for fireworks. A new strategy? I'm not sure evening fireworks is a practical bedtime routine, but whatever works!

Days in 2008 so far: 187
Vomit free days: 1

If he doesn't vomit from now until next year, almost half of 2008 will be vomit free! A girl can hope, right?

News Flash

2008-06-29T00:05:00.004-04:00

1. Twenty-four weekers don't "catch up".

2. Even if 24 weekers did "catch up", looking cute in a picture would not indicate one way or another whether that had occured.

3, Even if 24 weekers did "catch up", they would only catch up to the level of a child at their age with their same disabilities.

To set the record straight in case anyone is confused:

1. Noah is not a "normal" 3 year old.

2. He will never be "normal".

3. He's doing pretty darn good for a deaf-blind 24 week preemie who spent 7 months in the hospital, eats a pureed diet, spins in circles when overstimulated, and vomits regularly. We're ok with that.

5. Telling us that he's all caught up is not going to make us feel better about our life and it might make us really annoyed.

Now back to your regularly scheduled blog.

Just a little bit of bragging...

2008-06-16T22:03:00.002-04:00

Noah's CI has been activated for just over a year now, so his AVT therapist has been doing all sorts of assessments to see how much progress he's made. One of the assessment had a list of auditory benchmarks that kids with CIs should have after 1, 2, 3, or 4 years of AV Therapy.
Noah doesn't do some of the 1st year things - he's never been interested in imitating sounds in isolation, and as our audiologist will tell you, he's become quite good at not making any visible response when he hears sound. Fortunately his language skills make it clear that he can actually hear the Ling 6, even if he won't repeat them or drop a block in a bucket. What surprised me was the things he was doing that aren't in the first year's expectations. He has met all of the year 2 and 3 goals and about half of the ones for year 4. Apparently retelling an entire story from memory is a 4th year goal - who knew!
I really am amazed and proud at how Noah has taken off with his CI. Noah's speech is not just age appropriate for his actual age, it's advanced. And he's only been hearing since March of last year! He is picking up language incidentally as well, if not better, than his hearing peers. Wow! In light of this new information, we're starting to phase out AV Therapy. We'll be switching from weekly to every other week starting in July. There's a lot of important language development that happens in the next few years and we don't want Noah to get behind but at this point he doesn't need teaching so much as monitoring. Way to go, Noah!

If only he would learn how to eat...

Oh where is my baby?

2008-06-14T13:21:00.004-04:00

This has been a busy weekend. Noah has a new baby cousin as of this morning, and yesterday he got his new glasses. As is only right, Noah celebrates with a song...

I did it!

2008-06-03T14:01:00.002-04:00

We finally made our reservation for the deaf-blind conference this summer and I'm so excited. Check it out!

http://www.vcu.edu/partnership/pathways/

Oceanfront hotel in Virginia Beach... Rachel Coleman and Josh Swiller as keynotes... No vomit or feeding protocol for 3 days (thanks to Grandma's babysitting)... Sometimes theres an up-side to having a disabled child! Brian and I are very excited for some much needed time away. I'm also looking forward to meeting other parents of dual sensory impaired children. Not to mention cable TV, room service, and someone else to make the bed.

My Deaf Weekend

2008-05-30T22:48:00.004-04:00

Other than occasional times when Noah will notice an ASL conversation nearby or someone sees Noah's CI and approaches me, I don't pay particular attention to the hearing status of the people around me. This weekend was different.
On Friday Noah and I were at the mall when a man came up to us and shoved a paper in my hand. It said something like "I'm Deaf and I support myself by selling these ASL fingerspelling cards. Please give as much money as you can." I make it a rule not to hand out money to strangers unless I know what it'll be used for so I didn't buy his paper but it led to an interesting conversation. He eventually noticed that Noah responded to my signs close to Noah's face and not his 4-6 feet away. When he realized that Noah was deaf-blind he went away feeling sorry for him. I was struck that the seemingly intelligent and mentally stable adult supporting himself by begging for sales at the mall deserved more pity than my son. I don't know what Noah will accomplish, but it certainly won't be that.
Today we spent part of the afternoon at Noah's favorite place: King's Dominion (or as he calls it "Queen Dominion"). The difference today was that it was Deaf and Hard of Hearing Awareness Day. I was certainly aware of a lot of people that were using ASL, although I was disappointed that there weren't any other CI users (that I saw) or any information about oral language or CIs at the information tables set up. Maybe they should call it Deaf Cultural Awareness Day instead? I was afraid that Noah might be harassed by someone who is anti-CI (surely there was one person there somewhere!) but he was nice enough to cover himself from head to toe in vomit shortly after we arrived and overconfident mommy didn't bring an extra harness so he was CI free for most of our time. He switched easily to ASL, though (I assume because there were so many other people using it), so it didn't have a negative impact on his day. I had wanted to go to one of the interpreted show performances, but a rather nasty thunderstorm found us huddling in the build-a-bear store and we were about done for the day after that.
I'm intruiged by deaf adults. I try not to stare, but I'm sure sometimes I do - I want to take in as much as I can. We get a lot of stares too, and I don't mind. I know everyone's just jealous that I have the cutest sweetest 3 year old ever.

Noah's 3!

2008-05-30T09:21:00.002-04:00