Friday, April 21, 2017
An annual update!?
It has been just a few weeks shy of a year since I last posted a blog.
Do people even blog anymore?
The only reason I'm blogging is because I want to continue to document Alex's progress.
Alex is currently 3.5 years old and has been hearing for a tad longer than 2.5 years old.
And well - Alex just doesn't shut up!
Right around August of last year, he finally figured out his bilabials and called me Mommy for the first time (just one month shy of his 3rd birthday!!). In September, he started the preschool program in his oral deaf school. And by October, he was a completely different kid.
One of the biggest reasons for that is his glasses (which I'll blog about shortly), but he found his stride and just blossomed beyond our expectations.
At 3.5 years old, Alex can say nearly all sounds correctly (or at least to the same level as a typical 3.5 year old). He talks in complex or compound sentences nearly all the time. He asks age appropriate questions and he loves interacting with other kids. Singing and dancing are two of his favorite things.
The biggest thing? This kid is learning to read. He's learning to write. And he loves to spell. At 2.5 years hearing. INCREDIBLE.
Alex is our miracle. He was not given an easy start to life. He has more obstacles to overcome on a daily basis then many 3.5 years have had in their life. And he just soars.
Wednesday, May 4, 2016
the difference a year makes
Every few months, I've been taking some video of Alex just talking in his natural environment. I try not to push him too hard. I don't want to see his "highlight reel". I want to see where he is in that moment.
I do this so I can go back and see Alex's progress. Just like most journeys, Alex's road to sound and speech has had its highs and lows. Sometimes I feel we are in a plateau, and sometimes I feel we are in an explosion.
Last night, I put together his 20 month video clip of him talking. And luckily for us, we are in an explosion. At 20 months talking, Alex is basically a parrot. He will say what you say. In addition to that, he's making creative language too. He has made sentences that are 3,4 even 5 sentences long. The other day, Alex and Taylor were playing in the playroom and Tay had to go to the bathroom. Alex ran out after her and said, "Teetee, where you go?" It was amazing.
Alex has known all his colors since 3 months hearing (genius maybe -ha), but he now says all the colors too. He can count to 16 with ease and understands the concept of having two of something. And a big thing now is that he now knows all his letters by sight. And he even likes writing some of them (I, O and T are his favorites).
Sounding like a broken record, we still have lots of clarity issues. Alex still doesn't regularly close his lips while talking, taking away the sounds B/P/M from his speech. He calls me Nonny. I wish I could just say "BUDDY - CLOSE YOUR LIPS AND YOU'LL MAKE AN M SOUND", but I feel we have some oral motor issues that are causing the problems. I'm hopeful as he gets older and more confident in his voice, we will overcome it, but for now, I'm Nonny and Bubble Guppies is Uh-Ul Guh-ies...sigh. (Ironically, Nonny is a character from Bubble Guppies).
Anyway - here is his video at 20 months hearing. His "I love you" at the beginning is the absolute sweetest.
What made me come over here to blogland was that in my timehop, I noticed I posted his "talking" video exactly a year ago today, at 8 months hearing. We were super excited because Alex had JUST began vocalizing with meaning. He makes a few adequate attempts at animal sounds and kinda says the word "down". Alex started really using a small handful of words at 9 months hearing, so this really was the beginning of him using his voice.
I CANNOT believe how far he has come in a year. It's incredible to see his process receptively, expressively and cognitively. If he only had clarity with those few obvious missing sounds, I'd say he would be nearly where he should be. I'd say he would be on par with some of his hearing peers who were considered "late talkers". And I'd even go as far to say that his understanding of numbers, letters, counting and colors puts him a little ahead of the typical 2.5 year old.
Once again - this boy is a rock star. Our journey is far from over, but he owns this journey and we are so crazy exceptionally proud of him!
I do this so I can go back and see Alex's progress. Just like most journeys, Alex's road to sound and speech has had its highs and lows. Sometimes I feel we are in a plateau, and sometimes I feel we are in an explosion.
Last night, I put together his 20 month video clip of him talking. And luckily for us, we are in an explosion. At 20 months talking, Alex is basically a parrot. He will say what you say. In addition to that, he's making creative language too. He has made sentences that are 3,4 even 5 sentences long. The other day, Alex and Taylor were playing in the playroom and Tay had to go to the bathroom. Alex ran out after her and said, "Teetee, where you go?" It was amazing.
Alex has known all his colors since 3 months hearing (genius maybe -ha), but he now says all the colors too. He can count to 16 with ease and understands the concept of having two of something. And a big thing now is that he now knows all his letters by sight. And he even likes writing some of them (I, O and T are his favorites).
Sounding like a broken record, we still have lots of clarity issues. Alex still doesn't regularly close his lips while talking, taking away the sounds B/P/M from his speech. He calls me Nonny. I wish I could just say "BUDDY - CLOSE YOUR LIPS AND YOU'LL MAKE AN M SOUND", but I feel we have some oral motor issues that are causing the problems. I'm hopeful as he gets older and more confident in his voice, we will overcome it, but for now, I'm Nonny and Bubble Guppies is Uh-Ul Guh-ies...sigh. (Ironically, Nonny is a character from Bubble Guppies).
Anyway - here is his video at 20 months hearing. His "I love you" at the beginning is the absolute sweetest.
What made me come over here to blogland was that in my timehop, I noticed I posted his "talking" video exactly a year ago today, at 8 months hearing. We were super excited because Alex had JUST began vocalizing with meaning. He makes a few adequate attempts at animal sounds and kinda says the word "down". Alex started really using a small handful of words at 9 months hearing, so this really was the beginning of him using his voice.
I CANNOT believe how far he has come in a year. It's incredible to see his process receptively, expressively and cognitively. If he only had clarity with those few obvious missing sounds, I'd say he would be nearly where he should be. I'd say he would be on par with some of his hearing peers who were considered "late talkers". And I'd even go as far to say that his understanding of numbers, letters, counting and colors puts him a little ahead of the typical 2.5 year old.
Once again - this boy is a rock star. Our journey is far from over, but he owns this journey and we are so crazy exceptionally proud of him!
Monday, April 11, 2016
Counting on success!
Yeah - so I don't really blog anymore, but I do want to keep track of Alex's progress, not only for my own sake, but for those who are coming along the journey after us.
So let's see, last month, Alex's ears turned 1.5 years old....
and OMG OMG OMG YAY YIPPY WAHOO...Alex is doing so well!
When Taylor turned 18 months old, she hit her language explosion. She was a very early talker and by the time she was two, she was talking in paragraphs.
When Alex's ears turned 18 months old, we hit a language explosion too! He says new words daily. He will repeat literally anything you tell him to. He is starting to put two and three word sentences together and the concepts he understands is WAY beyond someone with a 1.5 year language level.
We still have oral tone issues and lots of articulation errors, but in the grand scheme of things, that doesn't matter right now. Articulation can be taught at any time. Language is the priority. And this dude gets language. He understands everything we tell him and he's getting pretty good at talking to us right back.
We've seen huge progress behaviorally too, and I'm pretty certain that is due to his ability to communicate better. When he does melt down, it's often due to the fact he's trying to tell us something we don't understand (yet). Or that he has to come in from outside. That's still a 100% chance of a meltdown.
Even though Alex has articulation errors, we are seeing slow but steady progress. He used to have issues making the OH and OO sounds. He's completely mastered the OH sound and we are starting to hear the OO sound more and more often. He struggles with bilabials like m/b/p and often substitutes them with n and d, but we've seen progress here too. He can end words with m and with prompting will start words with m (like more and milk). With prompting tools, he can make a b sound and just recently he started closing his mouth at the end of words like up and cup (which were just uh and cuh before). His reverse swallow and his tongue are still in the way a lot and he needs lots of work there, but even his ability to lateralize his tongue has improved so much in the past few months. Overall, we are super pleased with his progress.
Another thing that has happened over these few months is we've realized that Alex has that ol' smarty pants gene, just like his sister. I've kinda always assumed it was there, but with lack of language, it's harder to identify. His memory is ridiculously good. His problem solving skills are top notch, and just like with his sister, his ability to pick up letters and numbers came early and easy.
Recently, Alex has started counting on his own to 16. For being in this hearing world for 1.5 years, I was shocked. Heck, I know lots of 2.5 year olds (Alex's actual age) who can't count like that.
I've been trying to get it on video, but have been unsuccessful. The other night during a diaper change (we haven't touched potty training yet...), he started counting, so I grabbed my camera. I only got it started when he said "four" and it's not his best performance at all (his "ten" is awful - he normally says it super clear), but at least I have proof that this kid counts to 16. I've watched this video a bazillion times in awe that my 2.5 year old deaf boy who has been hearing for 1.5 years is counting! And although his clarity is far from perfect, I'm pretty sure anyone listening to him would know he's counting.
So, at this stage of the journey, we are so happy! We are so excited to see what Alex can do (besides say "eat more donut" super clearly)! We are so proud of him. And we love him oh so much!!
So let's see, last month, Alex's ears turned 1.5 years old....
and OMG OMG OMG YAY YIPPY WAHOO...Alex is doing so well!
When Taylor turned 18 months old, she hit her language explosion. She was a very early talker and by the time she was two, she was talking in paragraphs.
When Alex's ears turned 18 months old, we hit a language explosion too! He says new words daily. He will repeat literally anything you tell him to. He is starting to put two and three word sentences together and the concepts he understands is WAY beyond someone with a 1.5 year language level.
We still have oral tone issues and lots of articulation errors, but in the grand scheme of things, that doesn't matter right now. Articulation can be taught at any time. Language is the priority. And this dude gets language. He understands everything we tell him and he's getting pretty good at talking to us right back.
We've seen huge progress behaviorally too, and I'm pretty certain that is due to his ability to communicate better. When he does melt down, it's often due to the fact he's trying to tell us something we don't understand (yet). Or that he has to come in from outside. That's still a 100% chance of a meltdown.
Even though Alex has articulation errors, we are seeing slow but steady progress. He used to have issues making the OH and OO sounds. He's completely mastered the OH sound and we are starting to hear the OO sound more and more often. He struggles with bilabials like m/b/p and often substitutes them with n and d, but we've seen progress here too. He can end words with m and with prompting will start words with m (like more and milk). With prompting tools, he can make a b sound and just recently he started closing his mouth at the end of words like up and cup (which were just uh and cuh before). His reverse swallow and his tongue are still in the way a lot and he needs lots of work there, but even his ability to lateralize his tongue has improved so much in the past few months. Overall, we are super pleased with his progress.
Another thing that has happened over these few months is we've realized that Alex has that ol' smarty pants gene, just like his sister. I've kinda always assumed it was there, but with lack of language, it's harder to identify. His memory is ridiculously good. His problem solving skills are top notch, and just like with his sister, his ability to pick up letters and numbers came early and easy.
Recently, Alex has started counting on his own to 16. For being in this hearing world for 1.5 years, I was shocked. Heck, I know lots of 2.5 year olds (Alex's actual age) who can't count like that.
I've been trying to get it on video, but have been unsuccessful. The other night during a diaper change (we haven't touched potty training yet...), he started counting, so I grabbed my camera. I only got it started when he said "four" and it's not his best performance at all (his "ten" is awful - he normally says it super clear), but at least I have proof that this kid counts to 16. I've watched this video a bazillion times in awe that my 2.5 year old deaf boy who has been hearing for 1.5 years is counting! And although his clarity is far from perfect, I'm pretty sure anyone listening to him would know he's counting.
So, at this stage of the journey, we are so happy! We are so excited to see what Alex can do (besides say "eat more donut" super clearly)! We are so proud of him. And we love him oh so much!!
Wednesday, February 10, 2016
Sixteen.
Sixteen. That's the number of hours a week Alex gets formal therapy. Sixteen. Yeah. And if you think that's a lot, the number will be thirty one (!!!) come September. But right now, let's focus on sixteen.
I talk a lot about Alex's hearing loss. I know I do. But there is a reason for it. It's something that requires constant thought. Constant consideration. Constant accommodation. And even though sixteen is the number of hours of formal training, almost everything we do all day long is some sort of therapy. Our lives changed when we found out about his hearing loss, and therapy life is our new normal. But let's just talk about his formal therapy, shall we?
Alex attends an oral deaf school M-F from 9am-noon. During that time, he has daily one on one speech therapy. He gets one on one physical therapy once a week for his low tone and one on one occupational therapy two times a week to focus on his low oral tone. During school he also gets group instruction with a class that varies between 4 and 8 hearing loss peers (whom I've grown to immensely care about and love their parents too)! Group instruction ranges from music therapy, circle time, craft time, breakfast/snack time and gym time - all with a focus on hearing loss. There are a lot of demands placed on Alex and his peers. He's not even 2.5 years old, but their group instruction often lasts for 20-30 minutes. They are asked to listen, speak and follow directions. If they want a banana with breakfast, they needs to ask for it. And for a deaf kid just figuring out the this hearing world, it's not always an easy task.
Some days, Alex rocks these demands. Each kid brings home a daily sticker chart, and I think we are currently on a four day streak of getting all his stickers. Some days, Alex can't stand up to the expectations placed on him and he has a bad day. Luckily, we are seeing more good days than bad, but the bad are still bad. I can only imagine having all these demands placed on you all the time can get frustrating, and I can understand there are days he's just not in the mood to be therapied (a word I made up).
In addition to his oral deaf school, Alex also sees a PROMPT therapist once a week in the evening. Because Alex has low oral tone, he is missing many sounds, and our PROMPT therapist uses physical touching of Alex's face to help him learn how to make sounds. Andy calls this his most stressful hour of the week, as Alex often isn't a fan of the face touching. So sometimes the session goes well and sometimes we are paying out of pocket for him to be angry for an entire session.
So, it sounds like a lot doesn't it? And it sounds like it may be a bit too much for Alex, right? These are thoughts I have every.single.day. BUT - when you're dealing with hearing loss, you're dealing with speech delay. I mean, Alex was almost one year old when he heard sound for the first time. And even when he heard it, his brain wasn't even sure what it was. He may be almost 2.5 years old, but he's not even 1.5 years old hearing. That's quite the gap. And all research says that if you want to close that gap, you need to work hard in the formative years. So that's what we are doing. We are working our butts off now, to allow Alex less obstacles and struggles in the future.
But you know what? Alex likes school. Sure, Alex has bad days, but for the most part he is excited about going to school. I'm not sure he likes PROMPT even though he does like saying his therapist's name (Leah), but we feel it's working. Alex has recently started using the M sound and just over the weekend, we heard some B and P experimentation for the very first time ever! And the most exciting part? Alex is talking! He says new words every.single.day and his progress is very measurable. Sure, he has some major clarity issues, but there is no doubt he has chosen spoken language as his first choice of communication. He says his friends' names from school, he tells us basically what everything in the house is - - - he's even starting to put a few words together. And each new word or sentence is a huge celebration to us. Because we know how incredibly hard he is working to get here.
Andy & I are in a facebook group for parents with children with cochlear implants. There are thousands of people in this group with children at all stages of the cochlear implant process. We see kids just getting diagnosed, getting implanted and activated, at Alex's level, kids in school and kids who are fully grown. And one of the things Andy & I have noticed from kids who have had such a therapy rich life is that they often do very well in school and end up becoming quite successful in life despite their obvious obstacles. And I totally get it. Alex has grown up in an environment of high demands, lots of structure and a constant push to improve. Let's be real - sixteen hours of his life each week is dedicated to FORMAL therapy alone. If he can tackle these things at age 2, he's going to be able to tackle anything.
I talk a lot about Alex's hearing loss. I know I do. But there is a reason for it. It's something that requires constant thought. Constant consideration. Constant accommodation. And even though sixteen is the number of hours of formal training, almost everything we do all day long is some sort of therapy. Our lives changed when we found out about his hearing loss, and therapy life is our new normal. But let's just talk about his formal therapy, shall we?
 |
| Looking quite dapper for school. |
Alex attends an oral deaf school M-F from 9am-noon. During that time, he has daily one on one speech therapy. He gets one on one physical therapy once a week for his low tone and one on one occupational therapy two times a week to focus on his low oral tone. During school he also gets group instruction with a class that varies between 4 and 8 hearing loss peers (whom I've grown to immensely care about and love their parents too)! Group instruction ranges from music therapy, circle time, craft time, breakfast/snack time and gym time - all with a focus on hearing loss. There are a lot of demands placed on Alex and his peers. He's not even 2.5 years old, but their group instruction often lasts for 20-30 minutes. They are asked to listen, speak and follow directions. If they want a banana with breakfast, they needs to ask for it. And for a deaf kid just figuring out the this hearing world, it's not always an easy task.
Some days, Alex rocks these demands. Each kid brings home a daily sticker chart, and I think we are currently on a four day streak of getting all his stickers. Some days, Alex can't stand up to the expectations placed on him and he has a bad day. Luckily, we are seeing more good days than bad, but the bad are still bad. I can only imagine having all these demands placed on you all the time can get frustrating, and I can understand there are days he's just not in the mood to be therapied (a word I made up).
 |
| Alex and his SLP take a picture every day and send it to me as a reward for having a good session. |
In addition to his oral deaf school, Alex also sees a PROMPT therapist once a week in the evening. Because Alex has low oral tone, he is missing many sounds, and our PROMPT therapist uses physical touching of Alex's face to help him learn how to make sounds. Andy calls this his most stressful hour of the week, as Alex often isn't a fan of the face touching. So sometimes the session goes well and sometimes we are paying out of pocket for him to be angry for an entire session.
So, it sounds like a lot doesn't it? And it sounds like it may be a bit too much for Alex, right? These are thoughts I have every.single.day. BUT - when you're dealing with hearing loss, you're dealing with speech delay. I mean, Alex was almost one year old when he heard sound for the first time. And even when he heard it, his brain wasn't even sure what it was. He may be almost 2.5 years old, but he's not even 1.5 years old hearing. That's quite the gap. And all research says that if you want to close that gap, you need to work hard in the formative years. So that's what we are doing. We are working our butts off now, to allow Alex less obstacles and struggles in the future.
But you know what? Alex likes school. Sure, Alex has bad days, but for the most part he is excited about going to school. I'm not sure he likes PROMPT even though he does like saying his therapist's name (Leah), but we feel it's working. Alex has recently started using the M sound and just over the weekend, we heard some B and P experimentation for the very first time ever! And the most exciting part? Alex is talking! He says new words every.single.day and his progress is very measurable. Sure, he has some major clarity issues, but there is no doubt he has chosen spoken language as his first choice of communication. He says his friends' names from school, he tells us basically what everything in the house is - - - he's even starting to put a few words together. And each new word or sentence is a huge celebration to us. Because we know how incredibly hard he is working to get here.
Andy & I are in a facebook group for parents with children with cochlear implants. There are thousands of people in this group with children at all stages of the cochlear implant process. We see kids just getting diagnosed, getting implanted and activated, at Alex's level, kids in school and kids who are fully grown. And one of the things Andy & I have noticed from kids who have had such a therapy rich life is that they often do very well in school and end up becoming quite successful in life despite their obvious obstacles. And I totally get it. Alex has grown up in an environment of high demands, lots of structure and a constant push to improve. Let's be real - sixteen hours of his life each week is dedicated to FORMAL therapy alone. If he can tackle these things at age 2, he's going to be able to tackle anything.
Friday, January 29, 2016
the schedule
I've had this in my drafts posts for awhile, but thanks to a friend's blog post noting something similar, I decided to finalize and post it so I have it for documentation purposes. And this post is definitely not a "hey, look how I busy I am" post, because we are ALL busy, but more of a snapshot of our life right now. PLUS - after seeing my boss's schedule (who has three children all in middle/high school who are all active in extra curricular activities), I haven't even seen busy yet.
6:00am - alarm goes off. Andy gets in the shower while I play on my phone.
6:30am - I get in the shower. During that time, Alex normally wakes up, so Andy takes him downstairs to get him changed, get his ears on and gives him milk and breakfast. Andy also unloads the dishwasher from last night. (You'll see that Andy is a kickass partner in this thing called life.)
From 6:30-7am I shower, do my hair, makeup and get dressed. It's impressive at how efficient I am.
7am - I crawl into bed with Tay and wake her up. Even though she's 4, she still crawls into my arms and I carry her downstairs.
On M, T, and Th, my sister-in-law also arrives at our house at 7am. She helps with the chaos of the next 45 minutes. Andy leaves for work as soon as my SIL arrives.
I get Taylor set up at the table with breakfast and get a bunch of Alex cuddles in. I also get my breakfast and lunch packed for work. I talk to my SIL for a bit about what's going on and I'm usually out the door between 7:20 and 7:30am to be to work by 8am.
My SIL gets Alex on the bus at 7:45 and gets Taylor dressed and to school by 8:30am.
On Fridays, my mom gets here by 7am to do the same as my SIL and on Wednesdays, I utilize FMLA and take both Taylor to school 10 minutes from our house and Alex to school 40 minutes from our house so I can spend some time with their teachers. On Wednesdays, I don't arrive to work until 9:30am.
I work 8-4:45, and during that time, my SIL picks Taylor up from school, gets Alex off the bus, feeds them lunch and puts them to bed as they both nap from 2-4pm. Andy is home by 4pm every day.
On Mondays, Alex has prompt therapy from 5:15-6pm near our house, so I drive from work directly to therapy while Andy brings the kids there. I take Taylor and Andy takes Alex. Andy stays at therapy with Alex while Taylor and I go grocery shopping. We all arrive at the house right around 6pm, where it's a free for all for dinner (kids normally eat yogurts, fruits, nuts, cheese and crackers) and Andy & I put groceries away.
On Tuesdays, Taylor has dance from 4:30-5:15 near our house, so Andy takes the kids to dance, and drops off Taylor. I race to dance directly from work and normally get there at 5:07 so when she comes out of her dance room at 5:15, I'm there to pick her up. We got home and all eat dinner together at 5:30.
All other nights, Andy cooks the dinner I prepared the night before and we all have dinner around 5:15 when I normally get home. Andy often cleans up after dinner and loads the dishwasher while I get to play with the kids, help Taylor with homework, do therapy with Alex or just have a mini dance party.
Bath nights are every other night and Andy gives the kids a bath while I fold and put away all the kids laundry (omg the laundry). Andy releases the clean naked kids into Taylor's room where we lotion them up, and get them in their jammies and play in Taylor's room for awhile.
On non bath nights, we like to get out of the house. During the summer, we normally are outside most of the evening and during the winter we go for frozen yogurt, walk the mall, go to the library...
At 7pm, the kids get a snack, so we go back downstairs for snacks and the tv turns on. We half watch a movie or a tv show while playing/wrestling/building/arts and crafts and cuddling.
Bedtime is 8pm. Andy & I take turns switching off putting the kids to bed. Alex gets milk, a diaper change, brush teeth, a few books read to him, a song and then he goes right to bed. It all takes around 10 minutes. Taylor goes to the bathroom, brushes her teeth and then we read to her and she reads to us. It normally takes about a half hour to put Tay down.
On Alex nights, I go down to the basement and workout for about 45 minutes. On Taylor nights, I do a quicker workout in the family room.
After that, I prepare the kids backpacks for school, fill out the notebook for my SIL (what the kids should have for lunch etc) and then prepare dinner for the next day. I do a lot of crockpot and casserole dishes to make it easier. I also normally do a load of kids laundry (omg the laundry).
At around 9:30, I crash on the couch with a snack and start my second job (photography business) and I respond to clients and edit photos until about 11pm. Andy is in the room with me, so we chat a bit, but he normally is working too.
At 11pm, we head upstairs for bed and I'm normally sound asleep by 11:30pm. We are extremely blessed that our kids do not wake up in the middle of the night, so although I only get 6.5 hours of sleep a night, it's uninterrupted.
Some things that keep me sane - we outsource our house keeping, lawn service and snow plowing. I do most of my banking/paying bills during lunch. I also do a LOT of online shopping during lunch. Also, my husband and I "chat" throughout the day so a lot of important husband/wife conversations can happen while at work. We even planned our upcoming trip to Mexico over chat. It really truly helps. I do all my laundry on the weekends (and Andy does his laundry on his own time). And finally, MY HUSBAND is amazing. Not only does he do his part and so much more with house upkeep, he's a super hands on dad and he never has a problem when I have my photo shoots on the weekends. He's seriously the family's rock. I couldn't do this without him.
And there it is. Our day in a nutshell. And as exhausting as this seems, I know its only going to get busier. But omg - it's so worth it!
6:00am - alarm goes off. Andy gets in the shower while I play on my phone.
6:30am - I get in the shower. During that time, Alex normally wakes up, so Andy takes him downstairs to get him changed, get his ears on and gives him milk and breakfast. Andy also unloads the dishwasher from last night. (You'll see that Andy is a kickass partner in this thing called life.)
From 6:30-7am I shower, do my hair, makeup and get dressed. It's impressive at how efficient I am.
7am - I crawl into bed with Tay and wake her up. Even though she's 4, she still crawls into my arms and I carry her downstairs.
On M, T, and Th, my sister-in-law also arrives at our house at 7am. She helps with the chaos of the next 45 minutes. Andy leaves for work as soon as my SIL arrives.
I get Taylor set up at the table with breakfast and get a bunch of Alex cuddles in. I also get my breakfast and lunch packed for work. I talk to my SIL for a bit about what's going on and I'm usually out the door between 7:20 and 7:30am to be to work by 8am.
My SIL gets Alex on the bus at 7:45 and gets Taylor dressed and to school by 8:30am.
On Fridays, my mom gets here by 7am to do the same as my SIL and on Wednesdays, I utilize FMLA and take both Taylor to school 10 minutes from our house and Alex to school 40 minutes from our house so I can spend some time with their teachers. On Wednesdays, I don't arrive to work until 9:30am.
I work 8-4:45, and during that time, my SIL picks Taylor up from school, gets Alex off the bus, feeds them lunch and puts them to bed as they both nap from 2-4pm. Andy is home by 4pm every day.
On Mondays, Alex has prompt therapy from 5:15-6pm near our house, so I drive from work directly to therapy while Andy brings the kids there. I take Taylor and Andy takes Alex. Andy stays at therapy with Alex while Taylor and I go grocery shopping. We all arrive at the house right around 6pm, where it's a free for all for dinner (kids normally eat yogurts, fruits, nuts, cheese and crackers) and Andy & I put groceries away.
On Tuesdays, Taylor has dance from 4:30-5:15 near our house, so Andy takes the kids to dance, and drops off Taylor. I race to dance directly from work and normally get there at 5:07 so when she comes out of her dance room at 5:15, I'm there to pick her up. We got home and all eat dinner together at 5:30.
All other nights, Andy cooks the dinner I prepared the night before and we all have dinner around 5:15 when I normally get home. Andy often cleans up after dinner and loads the dishwasher while I get to play with the kids, help Taylor with homework, do therapy with Alex or just have a mini dance party.
Bath nights are every other night and Andy gives the kids a bath while I fold and put away all the kids laundry (omg the laundry). Andy releases the clean naked kids into Taylor's room where we lotion them up, and get them in their jammies and play in Taylor's room for awhile.
 |
| after bath shenanigans |
On non bath nights, we like to get out of the house. During the summer, we normally are outside most of the evening and during the winter we go for frozen yogurt, walk the mall, go to the library...
At 7pm, the kids get a snack, so we go back downstairs for snacks and the tv turns on. We half watch a movie or a tv show while playing/wrestling/building/arts and crafts and cuddling.
Bedtime is 8pm. Andy & I take turns switching off putting the kids to bed. Alex gets milk, a diaper change, brush teeth, a few books read to him, a song and then he goes right to bed. It all takes around 10 minutes. Taylor goes to the bathroom, brushes her teeth and then we read to her and she reads to us. It normally takes about a half hour to put Tay down.
On Alex nights, I go down to the basement and workout for about 45 minutes. On Taylor nights, I do a quicker workout in the family room.
After that, I prepare the kids backpacks for school, fill out the notebook for my SIL (what the kids should have for lunch etc) and then prepare dinner for the next day. I do a lot of crockpot and casserole dishes to make it easier. I also normally do a load of kids laundry (omg the laundry).
At around 9:30, I crash on the couch with a snack and start my second job (photography business) and I respond to clients and edit photos until about 11pm. Andy is in the room with me, so we chat a bit, but he normally is working too.
At 11pm, we head upstairs for bed and I'm normally sound asleep by 11:30pm. We are extremely blessed that our kids do not wake up in the middle of the night, so although I only get 6.5 hours of sleep a night, it's uninterrupted.
Some things that keep me sane - we outsource our house keeping, lawn service and snow plowing. I do most of my banking/paying bills during lunch. I also do a LOT of online shopping during lunch. Also, my husband and I "chat" throughout the day so a lot of important husband/wife conversations can happen while at work. We even planned our upcoming trip to Mexico over chat. It really truly helps. I do all my laundry on the weekends (and Andy does his laundry on his own time). And finally, MY HUSBAND is amazing. Not only does he do his part and so much more with house upkeep, he's a super hands on dad and he never has a problem when I have my photo shoots on the weekends. He's seriously the family's rock. I couldn't do this without him.
And there it is. Our day in a nutshell. And as exhausting as this seems, I know its only going to get busier. But omg - it's so worth it!
Monday, January 25, 2016
BOOM!!! (Another reason why Alex's nickname is appropriate.)
Taylor and Alex have been T-Bird and A-Bomb for as long as they've been Taylor and Alex. I'm pretty sure I call Taylor "bird" or "birdie" more than I call her Taylor. I refer to Alex as Bomber often, but usually just call him by his name when talking to him, just to help him understand, since he hasn't been hearing as long as the rest of us.
And although I probably could write an entire post on how their nicknames do a great job describing their personalities, this post isn't truly about that.
But this post is about an explosion from A-bomb. But this time, it's a great explosion! I'm pretty sure we've hit a language explosion!!!
When I go back and look at Taylor's progress, there is no doubt that she was an early talker. By 18 months of age, Taylor had hundreds of words (new ones daily) and was just starting to put sentences together. I think one of the hardest parts of Alex's speech delay is that I'm often comparing him to Taylor, and because she was an early talker, it makes the comparison that much more difficult.
In the oral deaf community, you often refer to you child as x months/years hearing. So although Alex will be 2.5 in March, he is just shy of 17 months hearing. But the ultimate goal in the oral deaf community is to bridge the gap between his hearing age and his actual age, so by the time they enter kindergarten, they are on par with their hearing peers receptively, cognitively and expressively.
So Alex will be 17 months hearing this week. And Alex easily has over 100 words and is learning new ones daily. Also, Alex is just starting to put basic sentences together (bye, Nana) and says some multiple word common phrases (I love you. Where are you? Here I am. All done.). Also, Alex never shuts up. Even if half of what he says is jargon or unintelligible, he is always talking. Most of what he says is spontaneous without us having to prompt him and one of his favorite things to do is go through a book and tell us what everything is. He pointed and said "umbrella" to me last night. I didn't even know he knew what one was!
Do you who that reminds me of? His sister at 17 months old!!! And since I know that Taylor was an early speaker, I feel that Alex's true expressive skills are between 17 months and 2.5...which means that he may already be closing that gap between hearing age and actual age expressively.
(A little bragging moment - his receptive and cognitive skills are already 100% caught up to his actual age. His therapists are doing receptive and cognitive therapies with him that are for 3 year olds!)
(A little not bragging moment - his social skills still need some work. He still has a hard time attending at circle time for long periods of time, but he's an active 2 year old boy - I'm not overly concerned about that.)
Of course, the biggest difference between Taylor and Alex at 17 months old is clarity. Taylor has always been pretty easy to understand and Alex has lots of annunciation issues. But as his speech therapist reminded me, that it is very common for deaf kids to have clarity issues, so we are working on getting the words first and tackling the articulation second. And combined with his PROMPT therapy (where a therapist moves his mouth to show him how to make certain sounds), we are optimistic that will come too. Even if he has to continue with speech therapy throughout most of his schooling, I have faith he will be able to speak clearly someday.
But let's stop and focus on the positive right now! My little deaf boy has recently decided that oral communication is his cup of tea. And with every new word that he shares with us, my heart explodes knowing that "he's got this." Because holy shit - - he really does have this.
And although I probably could write an entire post on how their nicknames do a great job describing their personalities, this post isn't truly about that.
But this post is about an explosion from A-bomb. But this time, it's a great explosion! I'm pretty sure we've hit a language explosion!!!
When I go back and look at Taylor's progress, there is no doubt that she was an early talker. By 18 months of age, Taylor had hundreds of words (new ones daily) and was just starting to put sentences together. I think one of the hardest parts of Alex's speech delay is that I'm often comparing him to Taylor, and because she was an early talker, it makes the comparison that much more difficult.
In the oral deaf community, you often refer to you child as x months/years hearing. So although Alex will be 2.5 in March, he is just shy of 17 months hearing. But the ultimate goal in the oral deaf community is to bridge the gap between his hearing age and his actual age, so by the time they enter kindergarten, they are on par with their hearing peers receptively, cognitively and expressively.
So Alex will be 17 months hearing this week. And Alex easily has over 100 words and is learning new ones daily. Also, Alex is just starting to put basic sentences together (bye, Nana) and says some multiple word common phrases (I love you. Where are you? Here I am. All done.). Also, Alex never shuts up. Even if half of what he says is jargon or unintelligible, he is always talking. Most of what he says is spontaneous without us having to prompt him and one of his favorite things to do is go through a book and tell us what everything is. He pointed and said "umbrella" to me last night. I didn't even know he knew what one was!
Do you who that reminds me of? His sister at 17 months old!!! And since I know that Taylor was an early speaker, I feel that Alex's true expressive skills are between 17 months and 2.5...which means that he may already be closing that gap between hearing age and actual age expressively.
(A little bragging moment - his receptive and cognitive skills are already 100% caught up to his actual age. His therapists are doing receptive and cognitive therapies with him that are for 3 year olds!)
(A little not bragging moment - his social skills still need some work. He still has a hard time attending at circle time for long periods of time, but he's an active 2 year old boy - I'm not overly concerned about that.)
Of course, the biggest difference between Taylor and Alex at 17 months old is clarity. Taylor has always been pretty easy to understand and Alex has lots of annunciation issues. But as his speech therapist reminded me, that it is very common for deaf kids to have clarity issues, so we are working on getting the words first and tackling the articulation second. And combined with his PROMPT therapy (where a therapist moves his mouth to show him how to make certain sounds), we are optimistic that will come too. Even if he has to continue with speech therapy throughout most of his schooling, I have faith he will be able to speak clearly someday.
But let's stop and focus on the positive right now! My little deaf boy has recently decided that oral communication is his cup of tea. And with every new word that he shares with us, my heart explodes knowing that "he's got this." Because holy shit - - he really does have this.
Thursday, December 31, 2015
52/52
"A portrait of each of my children, once a week, every week, in 2015."
 |
| Taylor Leighann |
My little elf with the adorable bedhead had a wonderful Christmas.
 |
| Alex Andrew |
We didn't put Alex down for a nap on Christmas since we were at my mom's house. But by 4pm, he crashed in my arms. And it was my favorite Christmas present.
Monday, December 21, 2015
51/52
"A portrait of each of my children, once a week, every week, in 2015."
 |
| Taylor Leighann |
I see you.
 |
| Alex Andrew |
After bath shenanigans.
And just because hugging is their thing. Every night before bed, they hug. Every time we ask, they hug. And sometimes for no reason, they hug. And every time they do, I melt.
Tuesday, December 15, 2015
50/52
"A portrait of each of my children, once a week, every week, in 2015."
 |
| Taylor Leighann |
It was parent watch week at dance last week. It was so great to see her show off all she has learned so far this year. She has come a long way from last year, showing off her twirls, leaps, arabesques and sautes. However, girlfriend still needs to work on her skipping skills.
 |
| Alex Andrew |
Right around last January, Taylor announced that she was "over Frozen", so we stopped incessantly watching the movie. Turns out Frozen Fever is back in house in the form of a blonde hair, gray eyed two year old. Truth is, we are pretty certain he has the hots for Anna. Some guys just go for the goofy girls.
(The rest of the pictures from parent watch week at dance...)
 |
| check out the height on her saute! |
 |
| arabesque |
Thursday, December 10, 2015
Alex
Alex with his great grandma on Thanksgiving. 91 year age difference. Total love.
One of the reasons I'm keeping this blog alive (albeit barely breathing) is because I know my updates on Alex have been a source of information or maybe comfort to many families going through the same thing. In addition, because of this blog (and facebook and instagram), Alex has quite a big fan club rooting for him to kick life's proverbial ass when it comes to his obstacles, so I know people are interested on how he's doing.
So I do want to continue updating this blog, especially when it comes to Alex, his plateaus, progress and setbacks, because really, we do see all of these things when dealing with Alex and his hearing loss and hypotonia.
If I were to have written this post last week, it would have had a completely different tone, a great upbeat tone, one of promise and happiness. But Alex has had a ridiculously awful week, mostly involving his behavior. After a series of a few days from hell, pink cheeks, on and off mild fevers and diarrhea, we took Alex to the doctors. Ear infections can be particularly scary with kids with cochlear implants (see: mastoiditis ), so we definitely wanted to rule that out. Turns out, Alex has a very mild touch of a virus, but the big thing is that his two year molars are cutting through. I hope (pray) that this is what is causing his sudden shift in behavior. I remember Taylor was a monster when her two year molars broke, so let us all hope that is the case with Alex. I'm sick of his screaming, falling to the ground, aggressive nature. Where's my cuddle bug?!
SO- with all that being said, let's pretend I did write this post last week. How's Alex doing?
I haven't really updated this blog since right around his first birthday, when he had a handful of words that he would use only after would say them first. In a way, Alex has sort of had a "speech explosion". I put it in quotes, because it's nothing like a speech explosion of a typical 27 month old (he's 27 months old today - wow!), but we've seen great progress from Alex. Not only does he have somewhere between 50-100 words, but he now uses words spontaneously and in context. Since he has the hearing skills of a 15.5 month old, this pleases me. In a handful of situations, he has also put two words together. (Read Lalala and There's dada). The fact we are seeing progress is very promising!
That being said, as he is talking more, his annunciation and missing sounds are even more evident. Even at 27 months old, Alex still does not make lip sounds (m/b/p/f/v). So, I've never heard mama. (he is starting to call me nonny though, so I'll take it). Also, a lot of his words are just straight up missing consonants. I'm embarrassed to type this, but a great example is poptart. He calls them ah-art. Pizza is izza. Lovie is lah-ee. Butterfly is dutter-eye. And another thing he does is replaces the oo sound (moo, you) with a very deaf "ng" sound. So "I love you" is I luh ng". The biggest reason for all of the above is not his hearing, but his oral motor deficiencies, specifically around his lips. And we've taken additional action around that.
Over Thanksgiving holiday, Alex and I met with a certified PROMPT therapist. PROMPT therapy is an evasive therapy where a therapist actually trains your mouth (lips, jaw, tongue..) by touching of the face. She believes that Alex has great use of his tongue, but is missing the use of his lips and needs to have his jaw lowered while speaking. So after our evaluation, we concluded that weekly therapy sessions would likely benefit Alex. Alex had his first PROMPT therapy session this past Monday, but as I mentioned above, his behavior is at an all time record BAD, so let's just say a lot wasn't accomplished at this session. But I'm looking forward to seeing what she can do, and she told me that he will be saying mommy in the future!
Beyond talking, his hearing is continuing to blow us away. We've been told many times there are a lot of limitations around cochlear implants and what a person can hear with them, but Alex seems to do so well. I do believe his limitations will become more evident when he can carry full conversations with us, but for now, we are extremely pleased. Even in super loud environments, Alex will turn to his name even when many feet away. Alex hears me and understands me even if we are two rooms away from each other. And another thing I find shocking is that when Alex sings songs, he actually sings in tune. We've been told many times, CI kids will be tone deaf. Maybe it's just a fluke, but I find it very awesome. He's been experimenting with whispering a bit too, and that is really cool to me. I can't say enough about this technology. It truly is life changing.
Receptively and cognitively, he's still great. I don't believe he's on par with typical 27 month olds, but his teachers have told us multiple times that he is one of the kids in the class who understands everything and gets all the concepts. Whenever I'm down on Alex's speech issues, I remind myself that he is very smart and he has everything going on right in his brain...so it will come out.
And behaviorally (ignoring this week), we have seen a lot of progress. In fact, last Thursday when I was visiting his school, all his teachers and therapists were raving about how well he is doing and how they are starting to push him more and more. Of course this week the reviews weren't as glowing, but let's chalk that up to molars, shall we? Seeing him mature behaviorally was definitely a big win for us too.
So overall, things are going well. Just last night, Andy was heating up some pizza for Alex for dinner and Alex only smelled the pizza.
"izza?"
"Yes. Do you want pizza?"
"Yeah"
"Okay, go over to the kitchen table."
*he does*
"Uh (up). Eat."
I had that conversation with my deaf 27 month old. And it was awesome.
Monday, December 7, 2015
49/52
"A portrait of each of my children, once a week, every week, in 2015."
 |
| Taylor Leighann |
Everyone once in awhile, Andy will pick up the good camera and snap a picture of me with the kids. And every once in awhile, I'm eternally grateful that he does that.
 |
| Alex Andrew |
And returning the favor. My two most favorite boys.
These pictures were taken at my annual work kids holiday party. It's such a great event! We eat breakfast, decorate cookies, get our faces painted, do crafts, and of course -meet Santa. And every kid walks away with a Target gift card. Pure awesomeness. We've gone every year since Tay was born with the exception of last year, because it interfered with Taylor's dance class. I'm definitely looking forward to it again next year!
 |
| Our annual Santa picture went exactly as expected this year! |
 |
| Taylor did have a wonderful conversation with Santa. She asked for paint, playdough, a Joy doll and if it isn't too much, also a Sadness doll. (Inside Out) |
This is Taylor's best friend. They both started daycare the exact same week and it wasn't long before I realized that her parents actually work with me. Even though these two don't go to the same school anymore, they've remained bffs, and I think they are just the sweetest peas in a pod you'll ever meet.
And here's a cute comparison from two years ago. A lot has changed in the past two years, but a lot has stayed the same too.
Wednesday, December 2, 2015
I'm not ready.
As the whole family was driving to the local hardware store, I asked Taylor about her day at school. Now that she's in UPK, she's with kids who will likely end up in her kindergarten class and may be with her for the next 13 years. Heck, one kid in her class lives right across the street from us.
She tells us about how she and Jane* and Gretchen rode bikes around the playground and how Jacob and Henry were pretending to be bad boys, and wanted the girls to be bad girls, but they weren't interested. She enthusiastically told a story about how she and Jane took turns wearing the princess dress during dramatic playtime. She then announced that when she turns five, she wants to invite Jane, Gretchen, Jacob and Henry to her birthday party. I laughed at her premature request.
I noticed that Taylor never mentions Lisa anymore. When she started UPK in September, she told us several times that she and Lisa were best friends, so I casually asked if she still plays with Lisa at school.
Instantly, Taylor's voice and demeanor changed. She got quiet and responded, "No... she told me she doesn't want to be my friend." Andy asked why and she said, "She says bad things to me. She says mean things about me."
In that moment, my heart broke. I was so not prepared for this. As Andy put it, she has never really experienced "mean" before. Her whole life has been made up of people being nice. Sure she gets disciplined and she understands that she doesn't always get her way, but she has never had someone be openly mean to her before. Ever.
Andy & I both kicked into appropriate parent mode and we both start spewing all the "right" things to say, like sometimes people forget how important it is to be kind, it's okay that you aren't friends with everyone, but you should always be nice to everyone, Lisa just doesn't know the rule that if you don't have anything nice to say, you shouldn't say anything at all.
But I could tell as we were each stating one parenting bullet point after another at her, it was too much all at once. And to be honest, I didn't want to say those things. My instinct was to call that four year old girl a bitch. But that was because I wasn't ready for this. For Taylor to experience social sadness. For Taylor to be in a scenario where I can't be there to protect her. I wasn't ready to even consider maybe it was my daughter who provoked this girl to say these bad things. (After further discussion, I don't think Taylor provoked it, but I don't think I will ever truly know). I wasn't prepared for the deep sadness that stabbed my heart when I heard that someone was mean to my daughter. How come nobody gave me a heads up about this so I could have been prepared!?
Sleep now, because you won't sleep for the next 18 years
Watch out for the terrible twos and the trying threes
Eating a meal in peace will never happen again
Diapers are expensive
Just wait until your baby starts walking!
But
all these warnings are about the newborn and toddler years. And these
are the warnings you read about over and over when researching
parenting. So when you end up overtired, frustrated, hungry, poor and
frantic, you are prepared for it. That's parenting. You've read about
it. You've been told about it.
But I don't think I've once read about how you're going to feel the first time someone truly hurt's your child's feelings over something she can't control. And how to prepare for it. And what is the right way to handle this situation.
And let's face it, this is only the beginning. It's only going to get worse and more complicated. I've handled the diaper blowouts and the spit ups and the tantrums and sleepless nights, but this...this petrifies me....
*all names were changed for privacy purposes.
48/52
"A portrait of each of my children, once a week, every week, in 2015."
 |
| Taylor Leighann and Alex Andrew |
I'm cheating this week. I had intentions of getting their weekly photos while at the Strong Museum of Play, but the GPS on my 6d drained my battery on the drive there and I was left without a good camera. Instead, here is a picture from our annual trip to the festival of lights. Just my two kids, looking adorable, hugging in the middle of the "Christmas Tree Forest". It was pitch black with the exception of Christmas lights, so this pictures is very grainy (my ISO was maxed), but to me, it's still perfect. And it's my favorite picture of these two together to date.
Tuesday, November 24, 2015
47/52
"A portrait of each of my children, once a week, every week, in 2015."
 |
| Taylor Leighann |
My girl.
 |
| Alex Andrew |
My boys.
Monday, November 16, 2015
46/52
"A portrait of each of my children, once a week, every week, in 2015."
 |
| Taylor Leighann |
We have had such a mild fall so far that we are taking full advantage of our outdoor time. The kids love splashing in "muddy puddles" even if there is little to no water in them.
 |
| Alex Andrew |
Alex's tongue says Michael Jordan, but Alex's feet say Oscar Wilde.
Tuesday, November 10, 2015
I love this age.
She grabs my cell phone and announces, "Mommy, I'm calling you."
I reach for the nearest toy and put it to my ear.
Me: Hello?
Taylor: Hi, this is your neighbor, Molly.
M: Hi, Molly. This is your neighbor, Shannon.
T: I live on *our street name*.
M: Me too.
T: I'm at work right now. I work in *our town's name*.
M: Oh yeah? What do you do, Molly?
T: I am a teacher. I also do good things like help people out by taking pictures of models.
T: I am a teacher. I also do good things like help people out by taking pictures of models.
M: Wow. That sounds like a good job.
T: It is. I do good things.
M: So, Molly, are you married?
T: Yes, and I have three kids.
T: Yes, and I have three kids.
M: What are your kids names?
T: I have a son named Mason, a daughter named November and a son named Greyson.
T: I have a son named Mason, a daughter named November and a son named Greyson.
M: So your kids are named Mason, Greyson and November?
T: Yes. But I'm busy at work right now.
T: Yes. But I'm busy at work right now.
M: Okay, I'll let you go then. It was nice talking to you, neighbor Molly.
"Mom, give the phone to daddy, I want to talk to him."
Andy: Hello?
T: Hi, this is your neighbor, Molly....
I love this age.
Monday, November 9, 2015
45/52
"A portrait of each of my children, once a week, every week, in 2015."
 |
| Taylor Leighann |
At Glen Falls the morning before her first Buffalo Sabres game. She and Daddy had so much fun!
 |
| Alex Andrew |
At Glen Falls moments before we realized the collar of his new coat popped off his left cochlear implant. I spent fifteen minutes searching for it and freaking out before it was found. Phew.
It was a perfect fall morning to head to Glen Falls and play with the over friendly ducks. Here are a few more pictures from the morning.
Subscribe to:
Posts (Atom)