Thursday, December 16, 2010

Dear Teacher,

Thank you for always assuming the worst of my child. He really wants to try his best knowing that you will criticize his every mistake. Refusing to praise his positive behavior is a great tool, and one we would like to try at home. I think the withholding of praise will make Noah try harder to do his best each day.
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!

Friday, December 3, 2010

Changes Through The Years

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.

Thursday, November 11, 2010

Potty Training and other significant delays

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.

Monday, September 20, 2010

Pre-Teaching

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.

Tuesday, September 14, 2010

Observation

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.

Saturday, September 11, 2010

Be Careful What You Wish For

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!

Thursday, September 9, 2010

Why I Feel Useless

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.

Tuesday, September 7, 2010

Progress Report, continued...

We briefly discussed Noah's progress report with him on Friday. We told him that he had done a good job at school, and that his teacher liked how he did his best work, obeyed the rules and was kind to his friends and polite to adults. We told him that she wanted him to work harder at listening, following directions, and paying attention. We gave it a generally celebratory bent even though it wasn't exactly a stellar report, because I know he did work hard to do his best at school. After letting him watch a little TV as a treat we didn't bring it up again.
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.

Friday, September 3, 2010

Noah's first progress report

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.

Thursday, August 26, 2010

Vote for Noah's friends!

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.

Tuesday, August 24, 2010

Kindergarten


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.

Wednesday, August 11, 2010

Glasses

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!

Monday, August 9, 2010

Awww!

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.

Friday, July 30, 2010

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

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.

Wednesday, July 28, 2010

IEP & Me

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.

Monday, July 26, 2010

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

Besides all of the wonderful care Noah is getting from his teacher and SLT, just being in a new place has done amazing things for Noah's vocabulary. Walking from the apartments to school each day Noah sees palm trees, an emergency phone, a security keypad, scaffolding, and a homeless man. Each new experience is an opportunity to learn more language.


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.

Wednesday, July 14, 2010

John Tracy Clinic


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!

Friday, July 2, 2010

No teefs!


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.

Sunday, June 27, 2010

It finally happened...


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.

Tuesday, June 15, 2010

Scars

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.

Tuesday, June 1, 2010

Testing

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.

Saturday, May 29, 2010

Conversation

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!

Thursday, May 20, 2010

a busy week

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.

Sunday, May 9, 2010

Happy Mother's Day!


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!

Wednesday, April 28, 2010

moving update

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!

Tuesday, April 6, 2010

Moving & Schools, etc.

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.

Wednesday, March 31, 2010

My Noah

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.

Friday, March 26, 2010

Stuff

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?

Friday, March 12, 2010

Cafeteria Lunch

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.

Friday, February 12, 2010

Concept Development at the Opening Ceremony

"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!

Thursday, February 11, 2010

Preemie Teeth

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.

Tuesday, February 9, 2010

20/80


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!?

Friday, January 29, 2010

Speech, Language, and Listening

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.

video

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).

video

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.

Tuesday, January 12, 2010

A Fun New Game

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!

Wednesday, January 6, 2010

A dishonorable discharge?

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.

Monday, January 4, 2010

AV Therapy (aka banging my head against a wall)

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.

Friday, January 1, 2010

The End of a Decade

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?