Questions

On our way to speech therapy this morning, Cha-Cha asked in his drawn out garble, "Momma, what happened here two years ago?"

Wow. I didn't know what to say, so I said what was on my mind... "Two years ago, you couldn't talk. You had mommy very worried. But now you can talk and it doesn't worry me as much anymore, because you work very hard."

He responded, "I don't remember that. I only remember you singing me good night songs."

How I wish I could always see the good things through his eyes all the time. :)

He then asked me, "How does my food go from my mouth to my bum?"

So much for reflective questions! ;)

May 12 - Mother's Day and the "Normal" Stuff

Day 12 of Better Hearing and Speech Month

Mother's Day and the "Normal" Stuff

I've been writing now for 11 days about CAS and how it pertains to our family.  CAS is not the only thing we focus on as a family - there are plenty of other "normal" day to day things that Hubby and I have to juggle  to make our family work.

Take this past week for instance - On Thursday, I had work obligations at a retirement, Bee-bee had ballet class and Hubby couldn't take time off of work to get her there and back.  Thankfully my dad was able to pick her up and a good friend was able to drive her to my work at the end of the party, meanwhile Cha-cha's daycare provider kept him later than usual for me so we could make it all work.  It's a fine balance that any parent has to go through to make the dance of parenting work.  On Friday, Bee-bee had Irish Step, so again, I had to make sure I got out of work on time, to pick her up at school on time, to get her home and dressed, to pick Cha-cha up on time, and then to get to dance on time.  Hubby had a night out with his friends, so I did the bedtime routine.  Saturday was speech for Cha-cha and soccer and team pictures for Bee-bee, a trip to a museum for Cha-cha and my cousin and her son, and then Hubby took the kids out to dinner so I could go out with a friend and he did the bedtime routine.  Of course then when I came home, we were getting ready for bed and Hubby let our dog Buddy outside, and sure enough, he was sprayed by a skunk.  At 11:00pm at night.  I don't think either one of us were happy, or had a lot of patience at that point - but we bathed the dog and I re-washed my kitchen floor and got myself to bed by 12:45am.

Today was Mother's Day.  Hubby had soccer, I had a visit with my sister, the kids and I baked brownies, and later on today we headed up to visit with my parents at their house.  We had some magical moments today - the two kids cuddling on the couch, the kids seeing the magical fairy doors that "appeared" in my parent's crab apple tree, Bee-bee finding money in behind the fairy doors, eating popsicles on the rock with Cha-cha, watching a dog try to swim in a puddle, and Hubby taking Bee-bee to the carnival near our house.  All of these things could be "normal" in any family - special needs or no special needs.

So where does Apraxia fit into all of this?  Well, it's integrated into who our family is.  We had to remind Bee-bee many times not to butt into Cha-cha trying to talk.  We had speech yesterday that sort of turned into a disaster because he wanted a certain toy from Toys R Us that he perseverated on from the night before.  We paused countless times so we could understand what Cha-cha was saying.  We had to translate to Bee-bee what Cha-cha was saying, even though he said it and she refused to listen to him because he didn't say it directly to her. We repeated many times what we thought he said back to us.  We asked him many times to speak up.  We asked him many times to make eye contact.  We asked him many times to repeat 2-4 times what he said so we could try to understand him.  We sat through at least 5 screaming in frustration tantrums today alone.  Do "normal" families have to go through this?  They probably do, just I don't know to what extent, because this is our "normal."

One Year Later

Hard to imagine that a year ago, Cha-cha had his big evaluation in Boston and Hubby and I were waiting for the results of that eval.  We knew in our hearts that it was Apraxia.  We were told by EI that was what they thought was going on, as well as his ENT who had said he would be surprised if it wasn't.  As much as we were prepared to hear those words, you can never be prepared enough.  The blow stings.  The dreams you have for your child seem to fall down around you.  You get angry, you grieve, you get sad, you beat yourself up about the could haves, should haves, would haves.  Then somewhere, somehow, you brush yourself off and do what you know.  You love.  You learn.  You help.  But you always go back to love.

We've grown a lot in the past year.  I've learned to be a better mother and a better teacher.  We've read and started talking to others who have children who also have Apraxia.  We raised money for CASANA.  We registered for the National Conference.  We sat and tried to be patient with Cha-cha as he struggles to tell us his story and we tried to figure it out.  We sought out new treatments, we graduated from EI and were introduced to Special Education in the Public Schools.  We found a fantastic, young Speech Pathologist, who will adapt sessions in anyway that will get the most attempts at language for our Cha-cha.

Then there are the ways that Cha-cha has grown.  He is now 3yrs 4 months and a mini giant at 3feet 5 1/2 inches and 45 lbs.  He can now touch the bottom of the shallow end at most pools. :)  A year ago he had 7 utterances with no words for mommy, daddy, his big sister or himself.  He can now say Mommy and Daddy, along with Bee-bee's correct name and he can say his first and last name (last name is still garbled, but I'll take it).  He can now speak in long 4-5 word phrases and has even gotten up to an 11 word sentence!  In context, the three of us can understand him about 85% of the time.  Close family, about 60% of the time, and strangers anywhere from 25-40%.  When people who have known him since he was younger see him, they are completely amazed at his ability to communicate and his desire to communicate.  Sometimes, they are completely shocked - I know, I can read their faces. ;)  He has come so far, but there is still a way to go.

We have some new challenges to add to our plate.  Not as significant, but big enough that need to be addressed.  Cha-cha's SPD gets in the way of some things.  He has low muscle tone and the developmental pedi believes that he has issues of gross motor planning that comes from the Apraxia.  He has always been very cautious and deliberate with his movements, but it's now effecting him more in the areas of playing on the playground, manuvering stairs appropriately, and joining in with other kids with age appropriate games.  The PT at school is also concerned and has picked him up for weekly sessions.

He also has a lot of anxiety going on - mostly separation anxiety.  He won't separate from us in his therapy sessions.  I don't have to say a word, he just wants to make sure I'm there sitting in the corner and present.  His Tiny Tots Camp this week was close to a nightmare.  He was the only kid who would not separate from his caregiver.  I even had Bee-bee stay inside the fenced-in area with him, but he screamed and cried.  I did the whole walk away and leave him and it was worse.  He would only participate if I held his hand and the game was Fishy, Fishy, Cross my Ocean, Simond Says or playing the parachute.  After thinking about it, those are the things he's comfortable with.  He isn't comfortable kicking, throwing or catching a ball.  He isn't comfortable with new people (even though the counselors are fantastic!).  Too much chaos is overwhelming for him.  He spent a lot of time watching the other kids playing and being content by that.  I can imagine that he's anxious about having to talk to other adults if one of us aren't around because of his Apraxia and his demeanor (kids are easier for him to talk to).  We will continue to work with this - more playdates and playgroups, more trips to the park, more ball play in the backyard and more stair climbing. 

It's been a long year - long but good, and a productive one for him.  He really is a delightful little boy who still gives the best sloppy kisses and the fiercest hugs around. :)

Two Quotes and Two Wonderful Kids

"Imagine if you will, a little boy who has a dream, a dream to communicate. He wishes he could answer your question so that you understand his response. He wishes he could ask for clarification when he doesn't know exactly what you want him to say or do. He wishes to connect with his friends in their verbal play or to raise his hand in eagerness to answer his teacher. Because in his mind, he knows what he wants to say, yet he just can't get it out. Imagine this little boy is yours." - from the new book Speaking of Apraxia. A Parents Guide to Childhood Apraxia of Speech by Leslie A. Lindsay R.N, BSN

I read this last night and immediately reposted it on FB.  This is exactly what I want to say to people when they ask me what Apraxia is and how it effects our Cha-cha.  I'm so close to printing it on cards and keeping it handy to pass out to people I encounter who ask about him.  It's not that I've found many people to be rude, and I'm not doing it to be mean, but I want people to understand what it's like to be Cha-cha and have Apraxia.  The words are simple, but it paints the big picture. 

We are lucky - he's made huge progress and he tries to communicate with those he feels comfortable with.  Even though he may get frustrated about speaking, he's happy.  He loves life.  He smiles and laughs and giggles and has become a little jokester.  He's a sensitive little guy who wants to do the right thing.  He goes with the flow and is happy if you're happy.  Not to many people can say that about their kid.  We are blessed.

Then the wonderful little girl in our life said this today about Cha-cha:

"Mommy, when Cha-cha is in Kindergarten, I want him to be just like me." 

I asked her how that would be and she said, "I want him to be as smart as me.  I want him to be in the top reading group and be very good in math.  I want him to be a good listener and not get into trouble.  I'm going to help him do that mommy."

And I bet she will.

This probably hasn't been easy on her having to go to so many appointments and have attention be focused on Cha-cha so much - but she gets it.  She loves him.  She wants him to succeed.  The lessons she's learning can't be learned in a formal classroom setting.  These are life lessons and she gets it.

There's a reason God chose us to have these two children.  At times, they try our patience to no end and may drive us to a drink or two.  Our hair is a little grayer, but we have more laugh lines than what we started out having 6+ years ago.  They not only teach each other, but they teach us too.

Happy Birthday and First Day Success!

Our Cha-cha turned three today.  It baffles me that 3 years ago, he came into our lives after a rough c-section...all 10lbs 3oz and 22 inches of him.  He didn't make that c-section easy.  My spinal didn't take all the way and it was scary for me that they would cut when I could still feel things (thankfully, they didn't and it took after they tilted me in a weird way).  I remember there was a lot of commotion, the anestheiologist said that as soon as I heard suctioning, within 2 minutes, our baby would be born.  I remember minutes going by and the doctor yelling to get a vacuum from the other room and that he was turning breech on the operating table.  There was a lot of pushing - later I found out that it took 3 people to push/pull him out.  My doctor joked afterwards that she didn't need to go to the gym that day. He didn't cry right away, but as soon as we could see him on that side table, he cried.  As soon as hubby was able to hold him, he quieted down and I got to kiss his cheek.  His birth was a little different than Bee-bee's - with her, there was a lot of friendly chatter, things seemed lighter - with him, I was more nervous.  Maybe because I knew that he was our last child, maybe I was afraid of my own mortality thinking of my 3 year old girl at home.  Either way, it was different. 

The nice thing about a second child is that not a lot of people come to visit you, especially in February during a snow storm. ;)  When you're stuck at the hospital for 4 days and all you are responsible for is nursing your baby and resting, you do a lot of bonding.  You're less nervous and you know how precious those first moments are because life will quickly pass by and you'll watch your child getting on a school bus.  You have this older child who comes in the hospital and views her brother with excitement and delight.  She beams at his little features and quietly sings, "You are My Sunshine" to him.  She talks about being a family now that he's here.

Flash forward to today.  We really weren't going to celebrate a lot for his birthday today - we did a lot of celebrating last week and this weekend, so he could focus on his first day of intergrated preschool in a language based classroom.  Bee-bee woke up singing Happy Birthday to him and cheering him on about being 3.  I made his special pancakes and he picked out a tiger shirt to wear to school.  He reminded us of his new teachers' names, talked about riding the bus, and me picking him up at the end of the day.

We dropped off Bee-bee and hubby and I drove to his school.  We were greeted at the door by his new teacher and she led him into the classrom and showed him the morning routine - hanging up his coat and backpack, putting his snack on the shelf in his cubby, making his mark next to his name (in which he put the cap back on the cover and made sure it was in the marker box - to which the teacher winked at me and said, "He's done this before, you can tell."), and then washing his hands.  I asked him for a high five and he looked at hubby and I and said, "Good-bye Mommy Daddy" and he spun around and off he went.  Hubby and I looked at each other and said goodbye to the other teacher and walked out.  As soon as we hit the cold air, we looked at each other an laughed.  All that nervous energy, all that planning and worry - and that is how he reacted.  I mentioned on FB today that God didn't let him cry - God knew I couldn't handle his tears today.  My own were hard enough to handle.

At the end of the day, he had a great first day.  He rode the bus and he went to daycare after school just fine (however he didn't nap).  He went to his afternoon/evening speech session and worked hard for 57/60 minutes he was there.  Three minutes before leaving, he looked at his SLP and said, "I done.  Good-bye" and walked out the therapy room door.  He was tired, he was done with the day.  He came home, we watched Curious George, ate dinner and went to bed after reading 2 books.  He asked for cuddles and gave me kisses goodnight.

Oh, and if you ask him how old he is, you will not hear him say, "Fu-wee"...no, he will tell you that he's five.  He better not grow up that fast!

No longer "Non-verbal"

It is safe to say that Cha-cha is no longer "non-verbal." 

I got so use to saying that over and over when strangers would say hello to him or when someone would ask him his name or why he didn't make a sound.

On his evaluation on June 27th, he had 7 words/approximations.  SEVEN. 

Today, he has said his version of farm, giraffe, outside, and paint.  He has so many words that it's hard to count (I'm guessing around 60).  We still are extremely limited on two word utterances, but the fact that he doesn't stop making noise compaired to 5 months ago when he wouldn't let us know he was awake in his crib for up to an hour - this is amazing.

He still speaks under his breath - unsure if he is correct or not.  He holds back in large groups - especially at school.  We've seen an increasing amount of ticks and strange facial movements when he's trying to recall a word you want him to say.  That is what Apraxia is - a motor planning disability.

But he is talking...and even at 10:30pm when he won't go to sleep, and he pops up and says his famous, "Allo!" (Hello) - you can't help but smile and laugh - because back on June 27th, the couldn't even say Ma-ma...and now that's all I hear.

And it is music to our ears. :)

"Welcome to Holland"

After my crappy morning, a good friend sent this to me to read...it speaks for itself...

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

"I don't know how you do it!"

I hear this statement a lot - from family, friends, and strangers. It makes me smile and wonder, is my life really that complicated? If someone else was handed the same wonderful deck of cards, would they not be able to handle it?

I don't think of my life is that complicated - yes, we all have our ups and downs, appointments, meetings, work, home, families, friends, etc - it's just my life and I've chosen to deal with it - sometimes I deal better than others, other times, not so much. I look at some of my friends and I often wonder how they manage - the SAHM's - I wonder how they stay sane and come up with creative things to do with their kids. The working mom - I wonder how she also manages her children (sometimes they have more than 2!) and her home. The single gal - how she manages doing it all by herself and working.

Since Big Girl was born, when people have asked me about how I do it - How I raise two children, how I work full time, how I keep a house (hahaha) - I tell them how I do it - I do it all because of this guy:


(Taken last summer)

Yes, my hubby. :)  As much as I try to do a lot on my own - he's always here to help me.  His job makes it possible for me to leave for work while everyone is still sleeping, so he can be the one to get the kids off to daycare in the morning and I can pick them up in the afternoon so they are not there too long.  He may not make it home in time for a family dinner - but not too many kids I know can say that they spend a good 2 hours before school with just their dad.  He's the more adventurous one of the two of us.  Often he will email me after his mornings with the kids with, "Did you know that Little Man can do....?"  or "Did you know that Big Girl can...?"  This usually ensues a lot of laughter from me at work.  He doesn't shy away from spending time with his kids - he's always involved.

When times get tough, he will often calmly remind me to focus on the things I can change, and not the ones I can't.  When a situation is particularly challenging he will look at me and ask, "Are we still on our honeymoon?"  At night when the kids are in bed, he will look at me and smile and say, "That Big Girl!" or "That Little Man!" and it is always followed by shared laughter.

On July 19th, we will celebrate 8 years of marriage...I don't know how I would have done the past 8 years without him!

*As an aside, we had a good appointment yesterday following up Little Man's evaluation.  When we're ready to share, we will.  Thank you for all of the prayers and well wishes.  We have a very special little guy who has some adoring fans, and for that we are extremely blessed.

Easter Bunny?

So this morning hubby was busy getting LO ready for daycare. They were doing their usual stuff - getting dressed, eating breakfast, walking Buddy...then LO kept saying, "I want to go to the Mall with Buddy." Hubby kept asking her why - to go shopping? She kept saying, "No!" Finally, she told hubby this, "I want to go to the mall with Buddy to see the Easter Bunny." Hubby asked if she could just show him the Easter Bunny on the computer, but she said, "No" - it had to be the mall.

So what does hubby do...he takes her AND Buddy in the car to the mall (at 8:30am mind you), and they get out of the car and he pretends that the door won't open (not to mention that the Easter Bunny is long gone and she didn't like seeing him from a distance - never mind up close!). So he convinces her to go back to the car, where she says, "I'm sorry Buddy. You didn't get to see the Easter Bunny."

I don't know what is more cute - her yearning for Buddy to see the Easter Bunny or hubby taking her to the Mall. :) God I love this guy!

It's okay Baby...

Last Sunday I was prepping LO for a visit with a new baby and she took matters into her own hands. She picked up her baby doll and cuddled with her on the couch. While I was getting ready, I could hear her say, "It's okay Baby, S*****'s here." I came in and asked her what she was doing and she did it again...







Way to make my ovaries melt!

Cherishing the Moment...

We've had lots of sickes going around lately - mostly just hubby and I - thankfully LO has been spared except for a runny nose. We've also been busy with work, the house and life - but most of all, we're just trying to cherish the moments we have together as a family...

Take tonight for instance - Daylight savings has completely thrown LO off - she napped from 3:45-5:15 and then after dinner, we decided to give her a quick bath and then watch Ratatouille for the first time. LO had other ideas - she took her tubby and refused to get out - so I just went with it. We drained the water and I let her play with her little ponies. Then she pooped in the tubby and thought it was the most hysterical thing in the world. Eventually we bribed her out, wrestled her into her horsie pj's, and settled in on the couch. I'm sure we all missed parts of the movie, but we had fun doing it. I was trying to dry out the ponies. LO kept wondering where the "mouse" went when he disappeared off the screen. Hubby decided to try my tofutti ice cream sandwiches, which prompted LO to want one. She was so cute licking it and making a mess. She lasted through the whole movie all the while either laying, jumping, and cuddling on us.

There are a few of these nights in my life that I will always remember - not because anything major happened specifically, but it was just the joy and happiness we shared as a family that means so much to me.

What a ham!

I just love LO - she is just so funny!

Tonight after she had her tubby, she wanted to have her hair done in pigtails and barrettes. Then when she saw the "pretty dot dress mommy" she took off her beloved Thomas PJs and wanted the dress on...I took out the camera, and LO started hamming it up...







"This is Thomas Mommy" (Don't mind the clean laundry...):


"Time to take the dress off LO and go to bed":


"I'm serious...":


"Oh! Mommy, are you still taking pictures?":

The Wedding

Today was the BIG day - my cousin got married! I didn't get a chance to take a ton of pictures since I was in the wedding, but here are a few...

The Bride:


The Family:


Mom, where is my champagne?


Ok, fruit chews are a better choice...


Boogie time!


Goofing with Uncle Paul


It was a beautiful day and a beautiful wedding! :)

God Bless You Mommy!

So this weekend, Little One and I both came down with a nasty cold - the green snot, sneezing, and coughing. So we took it real easy today. While Daddy was across the street watching football, Little One and I watched The Jungle Book. During it, I sneezed for the millionth time and LO turned to me and exclaimed, "God Bless You Mommy!"

God that girl has heart! :)

8 Years Ago Tonight

8 Years ago tonight, I had my first date with my husband. :) I had no idea that he would turn out to be "the one" - but it was a great date.

I remember pulling into the parking lot - and seeing this tall man wearing a red plaid shirt, pacing in front of the door of the Uno's Restaurant. I checked myself out in my rear-view mirror, making sure I looked ok and didn't have anything sticking in my teeth. He presented me with a mug - a cute mug that a child would color a piece of paper and put around the mug to decorate it. It was intended as something I could do with one of my special needs students. How sweet!

He was soft spoken, but a gentleman. He held open the door for me and pulled my chair out. The conversation seemed to flow easily. We continued to the movies after dinner and we watched "The Sixth Sense" - during a scary part, he reached over and held my hand. I thought it was the sweetest thing in the world. After the movie, we continued to talk until 1 in the morning. The night ended with a nice hug and promises to call in the next week.

The next morning, I had an e-mail saying what a good time he had. We spoke on the phone for 3 hours that Tuesday and another that Thursday - the next weekend we cooked dinner in his not so spotless apartment. Three weeks later, he was meeting my parents - My dad commented that he was "so in love with" me. The next weekend I met his mom for her birthday - weeks turned into months, and months turned into years - after a year and a half, at his sister's wedding - I realized I wanted to spend the rest of my life with him. Sometime after September 11th of that year, he realized the same - but wasn't quite that ready.

On March 3, 2002 - he proposed. On July 19, 2003 - we were married. On September 31, 2003 - we bought our house. On April 22, 2005 - we found out we were pregnant. On December 16, 2005 - we had our Little One. I can't wait to see what they future years will bring us.

I love him so much. :)