The Sweetest Sound

Lyla said her first complete and functional sentence today.

She grabbed her cup off the table, tried taking a drink from it (and yes I was watching her every move), it was empty.

Now here's where she usually drops the empty cup on the floor and goes to find another cup, and repeat until she finds water.

Today she kept the cup in her hand, walked over to me and handed me her cup, and looked at the cup, and then at me and said,

"I....want....water."

I immediately replied, "You want water? Of course you can have water! Let's go get some water!!"

She followed me to go fill her cup, and got distracted half way there by a toy camera, so I back tracked, trying to get her attention again, hoping she might say it again, but, she had already given me her want/need and just stood there waiting for me to fill her cup. Once her thirst was quenched, she dropped her cup as she remembered there were small pumpkins by the window to count and line up!

I text my mom and my sisters and Andy of course! I had to tell some one! Andy called later and I told him the whole scene as written out above, and of course I started to get all choked up. I mean, who wouldn't?!

I remember the excitement when Owen said his first sentence, it was something like "I see a turkey!" It was probably 2 years ago, and Noah, he said his first sentence a little less than a year ago, and I think it was, "I want more crackers." All were exciting, but this, this VERBAL communication is so amazing, I just can't believe she said it on her own!

I will never stop asking her how her day at school was, I will never stop asking her what she wants for lunch,  and everything inbetween, because one day, she WILL answer me back, I just know it.

Fall is in the Air...

I love this time of year! Sweaters, cozy blankets, warming my hands on my coffee mug and all the apples and pumpkins! It's mid-October so fall is really here, and our new routine of school buses and packing lunches is just a normal thing.

Seeing the littles blossoming is also exciting this time of year. Emmalee can write her numbers and letters so well now! She's doing MATH! She loves going to school so much! Lyla is doing new things as well! She's started to identify here nose, eyes and mouth! To me this is huge...just a few months ago she wouldn't or couldn't do that at all! She's also identifying pictures of monkeys! She sees a monkey and says "munchie! ooh ooh ahh ahh!" It's adorable and exciting because it's unprompted. She's copying us a lot more and mimicking a lot more words lately. I'll be meeting with her therapy team soon, and I'm really looking forward to that!

Owen & Noah are growing and changing at home. They're getting along better and play so well usually. (Right now they're in the other room screaming their faces off at each other...but you know...baby steps.) Owen's potty training, and doing really well...he's half way there! Noah's becoming more understandable when he's talking...we just have to remind him to use his "snake" sounds and slow down when he's talking.

Routine Changes

So we're almost a full month into school for both Lyla & Emmalee. We've got our routine down, and then....we decide to add the autism program to Lyla's IEP. Stepping Stones offers therapy for students on the spectrum, there are two types they offer, ABA (Applied Behavior Analysis) and SCERTS (Social Communication Emotional Regulation Transactional Support) (click to see more about each). After reading up on both, we felt that the SCERTS approach would fit Lyla's need best, of course we went back and forth because how are we supposed to know what will work?? We just have to try, so if after several months no progress is being made, we'll try the alternative approach. I've got faith that this will help her grow. I mean, already, with just daily interaction in a classroom setting with kids on or off the spectrum, and small group speech and the routine of getting on and off the bus, she's already changing, for the better!

So what does this mean for Lyla's routine? Well it's changed, AGAIN, but for good! When we got the diagnosis of ASD the doctor who we met with recommended Lyla work up to 25+ hours of intense therapy. Starting off she was going to school for 2.5 hours each morning. (12.5 hours total/week) We've added before and after class clinical hours. Monday through Thursday she goes in an hour early to work with one of the specialists from her team (speech/special ed/TA) and 3 days a week she stays an hour late. So that brings her up to being at school for 19.5 hours a week! My little 3 year old! She's doing great with it so far, it's been a week of doing this new schedule, and she's excited to get on the bus every morning, even at an hour earlier than we had gotten used to! On top of all this she's also getting speech and OT (occupational therapy) in the classroom in a small group setting. And today we're having a PT (physical therapy) evaluation done to see if she qualifies for any services in that area as well.

At home we've noticed more eye contact. She's babbling more, and using single words functionally, such as "more, all done, want, uh-oh, thank you, hi, bye," and "oh no!" She's also interacting with Emmalee, Owen & Noah more than ever. Small little things like this add up, and we are in awe of all of them!

First Days

Lyla had her first day of school on 9/3/14. She got on the bus for the very first time, and there were no tears, from her (now me on the other hand...). Lucky for me, we got to meet her at school and have a meet & greet with her teachers. She ran right into the classroom and started playing like this was a normal thing! She didn't pay much attention to anyone, even us, but played and flitted from toy to toy discovering new things everywhere she went. It was nice to put faces to names, and to see the environment she'll be in daily. She's going to love it there.

When the bus pulled up after school, she squealed with joy when she saw me, and came off the bus with a big smile on her face. I asked her how her first day at school was, and if she likes her teachers and of course she didn't answer, but I'll keep asking until she does.

After lunch she quickly disrobed and got a fuzzy blanket and laid out on the chair, all snuggled in after a morning of so many new and stimulating things.

The next day she was excited to go on the bus again, she really surprised me with how easy that new experience went. I really thought she'd have a hard time leaving without me on the bus too, but maybe because I never get on the bus, she knows I don't belong there!

We've been experience some ASD driven behaviors in her more lately. Things she didn't do a month or two ago, and a big one of those is sleep. I have the most awesome sleepers, ever. Still napping 3hrs a day and go down without a fuss at night at 7:30/8pm to sleep at least 11hrs a night. For a couple months now, Lyla has been struggling with going down easily at night. We've had to empty her room of a lot of things, and we're still learning what else to get out of there. Pretty soon it will be a mattress on the floor and that's it. This has recently spilled over into nap time as well. Which is tough, because she really needs her naps, if she doesn't nap she's passing out by 6pm...so we can't really have that. I thought for sure school would tire her out, but in her case, the over-stimulation of school is having an opposite effect. We'll figure out what is best to help her rest...it will just take time and trial and error.

Am I Wrong?

There's a song that I hear quite often on the radio, you all know it or have heard it at least once, "Am I Wrong?" by Nico & Vinz. Well I just really love this song...it holds a lot of meaning for where I am right now. If you don't know the lyrics here they are:

                                                                     "Am I Wrong"

Am I wrong for thinking out the box from where I stay?
Am I wrong for saying that I choose another way?

I ain't tryna do what everybody else doing
Just cause everybody doing what they all do
If one thing I know, I'll fall but I'll grow
I'm walking down this road of mine, this road that I call home

So am I wrong
For thinking that we could be something for real?
Now am I wrong
For trying to reach the things that I can't see?

But that's just how I feel,
That's just how I feel
That's just how I feel
Trying to reach the things that I can't see

Am I tripping for having a vision?
My prediction: I'mma be on the top of the world

Walk your walk and don't look back, always do what you decide
Don't let them control your life, that's just how I feel
Fight for yours and don't let go, don't let them compare you, no
Don't worry, you're not alone, that's just how we feel

Am I wrong (am I wrong)
For thinking that we could be something for real?
(oh yeah yeah yeah oh)
Now am I wrong (am I wrong)
For trying to reach the things that I can't see?
(oh yeah yeah yeah yeah)

But that's just how I feel,
That's just how I feel
That's just how I feel
Trying to reach the things that I can't see

If you tell me I'm wrong, wrong
I don't wanna be right, right
If you tell me I'm wrong, wrong
I don't wanna be right
[2x]

Am I wrong
For thinking that we could be something for real?
Now am I wrong
For trying to reach the things that I can't see?

But that's just how I feel,
That's just how I feel
That's just how I feel
Trying to reach the things that I can't see

So am I wrong (am I wrong)
For thinking that we could be something for real?
(oh yeah yeah yeah oh)
Now am I wrong (am I wrong)
For trying to reach the things that I can't see?
(oh yeah yeah yeah yeah)

But that's just how I feel,
That's just how I feel
That's just how I feel
Trying to reach the things that I can't see

(Lyrics found at: http://www.azlyrics.com/lyrics/nicovinz/amiwrong.html )

This song can mean something to anyone who is on a "road" anywhere in their life. For me it's about all these changes with Lyla, her diagnosis, her going to preschool at 3 years old, everyday for half days, and taking a BUS to/from! So often I think of how I could have denied the pursuit of a diagnosis, and let her just "Be." but what would that do for her? Nothing but close more doors that we are trying so desperately to open! I really have no idea where this road will take us, but we're on it, and I feel like it's the right path for her and our family. I want nothing more than for her to succeed and be able to share with us all the amazing things she knows and just can't communicate to us right now. I really believe that this daily routine of busing to school and being integrated into a small classroom of her peers, along with therapy and reinforcing all this at home, will unlock some of what's holding her back. I cannot wait for these weeks to unfold. I'm so excited for the "things that I can't see!"

Tomorrow she takes her very first bus ride, and we get to meet her at school and visit with her teachers and classmates and their parents for the first hour of the day. I'm so anxious, nervous and yet, so ready. This will be her place to grow. 

A REAL Family Vacation!

Last week we took the kids and joined my family for a vacation in the Adirondacks. We stayed in a 3 bed, 1 bath small cottage with my parents, my sisters and my brother in-law and my nephews! For 2 nights out of the 7 we had 13 people sleeping in this little place! It was a whole new experience for all of us! We had fun times, and we also had some rough patches. But in the end, we're all family and we love each other no matter how tightly we're packed!! HAHA!

Here's all the kids around the table having a snack.

The weather was a bit chilly most of the time there, for August anyway. But we did get to spend a day at the beach! In the sun it was nice and hot, and there were a few sun burns to go around! The kids loved the water, and didn't want to leave!

Walking to the beach!

Add caption

Even Papa played in the sand!

Owen never stopped digging!

Lyla never stopped running to the water!

Noah never stopped filling his bucket!

Emmalee never stopped smiling!

We even ran into some friends of my parents from church, we seriously can't go anywhere without running into some one my dad knows! The kids played at the playground for quite awhile and were exhausted for bed time! Bedtime was a squishy situation, 6 people in one room, and 1 little girl who has trouble getting to bed in her own home, well made for short night and early mornings. But they all had a great time!

Emmalee is 5!

Emmalee turned 5! We celebrated a few times...once when we were on vacation, then on her actual birthday at home, and then we also had a few friends and cousins join us for frozen yogurt! I can't believe she's 5 already!!

Here are her favorite things:

Animal: unicorns

Activity: ABCmouse.com

Color: orange

Food: oranges

TV show: Curious George

Movie: Despicable Me

Book: Goodnight Moon

When I grow up I want to be: a fire truck girl.

I would like to visit: Lucie's

My best friend is: Carra

The thing I like most about myself is: that I love reading.

Fun things ahead this year for her are staring Kindergarten! Going to school for a full day and riding the school bus! I can't wait to see the surprises she has in store for us with all the amazing things she'll learn in the upcoming year!!

The End is Only the Beginning!

Today is Lyla's last day of Early Intervention services. She gets to see each of her awesome therapists today for one last session before she moves on to a preschool program in September!

This summer we increased the frequency of Lyla's speech therapy, occupational therapy and special education instruction, from 1 hour each therapy one time per week, to three times per week equaling 2.5 hours of each therapy. This small increase made a huge difference in Lyla's daily interactions and communication. She is now using the word "open" functionally, and is more interested in her siblings than she used to be.

Come September she will be taking a bus, YES, my 3 year old will be on a BUS, to preschool everyday for half day of classroom instruction and therapy. I am sure this will be a big adjustment but in a few weeks time it will become her "normal" and she will thrive even more!

I'm anxious to find out her busing schedule, meet her teachers and therapists, as well as see the new location of Stepping Stones!

First we take a "vacation", is it really vacation when you have 4 kids under 5??? I don't think so. But a fun trip none-the-less is in our near future, and we look forward to that!

Open! Open!

This is one of the few words Lyla is using "almost" functionally right now, unprompted. By "unprompted" I mean I'm not saying it first, she is. "Almost" is because it really wasn't 100% functional but I got it. This has happened a couple times the past couple days, so I need to get it down on paper so I can remember! She came up to me with a toy and said and signed (aggressively I might add) "OPEN! OPEN!" the toy couldn't be opened, but she wanted me to turn it on, obviously. She rarely uses any words functionally and HATES being asked if she wants "More?" she grumbles and refuses to say that word, but even today, she said it, after being prompted if she wanted more watermelon! Small steps!

She's also singing a lot more on her own, she has an amazing memory and I just love it. I will have to ask about music therapy. I think that could open up some doors for communication with her.

What Are a 3 Year Old's Favorite Things?

One of my friends posted her daughter's journal entries that she has them do yearly on their birthday, so I decided that this year I would start that with my kids. Since they can't write yet, I've asked them the questions and jotted their answers as they said them.

Before I share their answers, Owen answered most of the questions unprompted and these are his words. Noah had to be guided a lot more, so some are based on what we know, or what he picked from a few choices. Lyla doesn't answer questions so hers are what I think she would pick.

Things left blank we didn't get an answer for...but it's going to be great to have these to look back on in the future!!!

3 turn 3!

We are 3!!!

Andy & I cannot believe that these three little miracles are 3 years old already! Sure the days are long, I'm the first to admit it. Being home daily with 4 kids, and 3 of them at the same age, and one of which has special needs and therapists coming in daily, is exhausting. But the months are flying by. Lyla will be starting preschool in the fall! She's getting into an autism program and we are really excited to see her make some huge progress there! Noah & Owen will be staying home with me while their sisters are in school, with only 2 of them in tow we might be able to get out a little bit more in the mornings (hopefully if that's why Lyla has school) for zoo trips, the library and other fun adventures! I foresee this year being a very exciting and fun one!

Noah got a tee-ball set and a baseball mitt! He's going to be our star hitter for sure!

Owen got a bunch of dinosaurs, which he picked out before his birthday. He love all sorts of animals and is in awe of the HUGE dinosaurs!!

Lyla got her very own sleeping bag and a bed tent. The tent will go up soon, but the sleeping bag is already in use! She loves to snuggle up and wrap herself up in blankets, so we thought a sleeping bag would be perfect!

Well...I didn't make it a year, but half way is better than nothing!

Now that summer is upon us, and with our new crazy schedule, I've let the ball drop on this "picture a day" thing. I'm going to just post when I can about whatever moves me, and if I have a photo, great, if not, no biggie!

We celebrated Independence Day this year in our traditional way of going to my parents for a cookout and watching the fireworks from their backyard! Last year we missed out, due to 3/4 kiddos having a bad stomach bug, it was the first time I haven't been at my parents for the 4th! So back to tradition. Every year my parents hem and haw about having people over, and then a week or two before they invite the whole extended family and some friends, who always come! I think there was one year where they were away over the 4th, but we still had a little picnic at their house, even though they weren't there!! (This was before kids!)

This was the triplet's first year awake for the fireworks! We thought for sure we'd have 1 or 2 that would be a little nervous about all the fireworks in the neighborhood, but NOPE, they ALL loved it and were in awe of the bright lights and loud pops! They all stayed up until the show was over, and then Lyla curled up on the floor under a blanket and fell asleep!

What stinks is, I didn't get one single picture. I was too busy chasing kids, socializing and attending to the needs of the kids that I didn't even take my camera out of my bag. We made good memories, and I'm hoping some one snapped a picture for me!!

Day 177: The Word of the Day is: "YUCKY!"

Today at dinner Lyla was eating her french fries and I look over and she's opening her mouth weird, as she does when she doesn't like what she's chewing on. So I put her plate in front of her so she can spit it out. She does, and looks at it and says (completely unprompted) "YUCKY!!!!" 

Now, if one of the other kids would've done this I'd have said, "that is yucky and you shouldn't spit your food out, you should swallow it." But in this case, I was cheering and saying "YES!!! That IS Yucky!!!" and then I started bawling because she said something that had true meaning without us prompting a response! 

A truly amazing moment to end a long day.

The beginning of the day my mom came over and we went to visit Stepping Stone preschool. They have integrated classrooms for kids with IEPs (Individualized Education Plan) and kids without who are normal functioning. We really would like to see Lyla in this type of setting, at least to get a feel for what her needs will be when it comes to a classroom environment. Walking into this school I just knew this was the place for Lyla. All these staff who we passed by in the hallway or who walked by us while we were waiting for our "tour guide" greeted us with bright smiles. The woman who took us on the tour and explained the programs they have available was so great. She made me feel like Lyla was already placed here and this is what they can/will do for her when she starts in September. (She actually apologized for doing this later on, but I think that's really part of what sold me!) It's close to home, the kids all seemed so happy and relaxed. I can't wait to put this place down as her preschool on Monday when I call up the CPSE head. I can see that they will guide us along all these unknowns we have ahead of us, and I am looking forward to the fall when she can start.

Day 176: PreK Graduation!

Day 173: "Crocheting..."

It may be Spring, and nearly summer, but I'm still working on crochet goods! This is a hat I made for an auction to raise money for the March of Dimes. I don't crochet AS much as I do during the winter. Most people aren't looking for warm hats and such. But I've been working on some new ideas, and continue to play around with old favorites as well! I'm hoping to get a bunch of ready-to-ship (RTS) items made so that I can list them and have no wait time...I love doing custom work and colors...but it makes the process a lot longer. So hopefully I'll find some interest in things I make through this slower season! :)

Day 172: "Happy Father's Day!"

There's nothing like playing in dirt with your daddy!

Day 171: "Toad"

Noah caught a toad!!!

Mr. Toad.

Day 170: "Very Merry UnBirthday to Emmalee!"

Her bday celebration at school.

Everybody singing to her!!

My girl!

Day 169: "Skinny Minnie!"

Oops!!!

Much better!

Day 168: "Field Trip!"

Day 167: "More For the Birds!"

Looks like there's 2 little peepers in there!!! And there's Momma Bird in the tree in our front yard, making sure we're not trying to get them!

Day 166: "Baby Birds"

Look at this pile of feathers! A Robin built a nest on our porch light after several attempts of us pulling down her starter branches. It's been there for a few weeks, and the other day we saw a little beak poking out. There's 2 or 3 in there!!! I just hope the neighbor's cat doesn't get to them the day Momma Robin teaches them to fly.

Day 165: "Cousins"

Day 164: "Diggin' in the Dirt"

Day 163: "Bittersweet"

This is Lyla. She is just shy of 3 years old (I can't believe it's been almost 3 years since we welcomed these little miracles into our life). Today is a bittersweet day. Lyla was given the diagnosis of Autism Spectrum Disorder (ASD).

Why is this bittersweet? Why aren't you sad, devastated, angry, scared? Well I am all those things, but I am also relieved, anxious, ready and content. We've known for several months that Lyla was a little behind her brothers. She and Noah both started Early Intervention services back in October of last year and we were so ready for both of them to start communicating with us in real words! Noah within a few months was making huge strides, and we were finally understanding each other, whereas Lyla was making no progress and even made some regression, which was discouraging. After a few more months and suggestions from her speech therapist (ST) we decided to pursue the opinion of a Development Pediatrician who specializes in, well, development and specifically Autism Disorders. When I called to request an appointment I was terrified, and when they called me to interview me about Lyla, I was worried I'd say the wrong things and they wouldn't see her and we'd be stuck. But they wanted to see Lyla, and today was that visit.

What is Autism Spectrum Disorder?
At { http://www.autismspeaks.org/what-autism } it says:

"Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.

ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.

Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age."

So what now? I'm asking this myself. With the support of her therapists and team of teacher/service coordinators etc we will put into place the right plan for therapies to help Lyla learn to communicate and develop behaviors she doesn't have hard-wired like we do. Over the next several weeks this plan will be developed and executed and as a family we will figure this all out. Because Lyla has the diagnosis there will be more doors open for her than if she did not, so for that I am relieved and content. I knew there was something going on, but didn't know what it was. Sure, I suspected Autism, but I hoped I'd be wrong. No one wants this for their child, but with this diagnosis, opportunities for growth and development are so much greater now than if we were to leave her to catch up at her own pace.

Lyla is such a loving and affectionate individual and I believe with all we have in store for her she will succeed! I'm still anxious and scared, but I'm ready for whatever this roller coaster will put in our path. As long as our Lyla is getting what she needs, we can do anything and long as we never give up.

Day 162: "TBT"

June 5, 2013 Closeup!

Day 161: "Just a Thought."

Who's with me????

Day 160:

Day 159: "Say Goodbye to the 'Fro!"

BEFORE

AFTER!

Day 158: "Lyla and her Onions"

Day 157: "Stroll For Strong"

Today we walked for a great cause that we hold dear to our hearts. Golisano Children's Hospital at Strong is where the NICU is that the triplets called home for the first 18 days of their life. We are so lucky to have such amazing resources so close to home and without them who knows what our story would be today. But our story is of 3 happy, healthy almost 3 year olds, giving us a run for our money!!! We are lucky to have them in our lives, and without the NICU I don't know if it would've been a possibility!

We're ready to walk!!! Or are we????