Sunday, July 31, 2011

What is your favorite color?

Such a simple question that children often get asked ( just after their name, age, if they have siblings, or favorite food) - but if you have verbal apraxia, you may not be able to answer any of those questions or you may not be able to pronounce the words; even though in your head you know what the answer is.

Lately, I've been wondering what LM's favorite color is...I've watched him when I give him sippy cups, does he prefer the green or the blue? The other day, I took him to LLBean to pick out a backpack for daycare (because the pictures on the computer screen were too small) and he chose the red snake back pack. At therapy the other day, he chose the purple construction paper. During his play dough play last week, he chose the yellow play dough. I took him to Lowes to look at paint colors for his new room, and he chose sh*t brown and lime green (yeah, not happening!). During the past few days, we've given him the choice of what freeze pop he far we have 2 pinks, 3 blues, a green and a yellow.

A while ago, I brought this up to hubby and he said, "I don't even know what my favorite color is!". I guess LM is like his daddy for this one! I bet it doesn't matter for LM either.

Friday, July 29, 2011

Fantastic Friday #2

A look at the positive things from our week!

On Saturday, we celebrated my dad's 65th birthday with a pig roast...Little Man's comment as soon as he saw the pig turning - "Uh-oh!"  It was 95 degrees out and our kids enjoyed playing on the slip and slide - here are a few pics my aunt took (and I had fun editing them in instagram):

 The only picture I know of with just my dad and my siblings.  I remember one from Easter in 1st grade, but I think it was just the girls in that one.  My mom even had t-shirts made up with my dad's picture for the occasion!

 Slip and slide fun!

 My Little Man

 Her new smile was a big hit!

 I love her eyes in this one!

He loved the whipped cream frosting on the cake!

My mom, being an artist and an art teacher, invited the kids and I to the Museum of Fine Arts with a former teacher of hers.  I was a little leery of taking both kids there - Big Girl has gone on many occasions - her first visit being when she was about 15 months old - I think she is one of the few 15 month olds who could point out who Napoleon was in a picture and say his name. ;)  I have to say, both kids behaved wonderfully - it was one of those days when I had to say to myself, "See, you're doing an awesome job!  Look how well they are behaving!"  I did resort to the stroller with Little Man and I let him out for periods of time when he wouldn't be able to destroy million dollar glass pieces, but he was very content and even napped towards the end of our visit.  Big Girl talked nonstop, which is no surprise.  My mom's friend found her hysterical and couldn't believe how one 5 1/2 year old could talk about art for almost 2 1/2 hours.  I have to say, I was pretty impressed too.

Talking art with Nana

Big girl had a big accomplishment - she saved up her $90 to get the new Bitty Baby Backpack kit.  I made a deal with her - I had told her that I wouldn't spend another dime in that store and if she wanted something, she had to pay for it herself.  Well, when I saw that it was only another $28 to get the doll included and knowing how much she plays with her "Ava" doll - I told her that I would get her a new doll.  On Wednesday after therapy, we drove 30 minutes away to our nearest American Girl Store and purchased "Jewel."  Big Girl will tell you that she came out of her belly - she even went as far as to have Little Man kiss her belly before going on our adventure.  According to the happy mother, "Jewel" weighed in at 6 lbs and has been nursing and sleeping like a champ.

Hanging with Buddy - Buddy loves him so much and often seeks Little Man out for cuddles

Little Man is growing more and more sure of himself as the summer progresses.  He really seems to be coming out of his shell more and more.  I just hope and pray that it continues when school starts.  He's been actively working with his therapists when they come to the house and he's making more sound noises than ever.  It rained a lot over the nights and on Monday during a walk when it was starting to drizzle, he noticed the puddles and then immediately pointed to the sky and urging me to look with him.  It was almost like he wanted to say, "I get it!  Rain falls from the sky and makes puddles!"  For the rest of the week, whenever he saw a puddle, he'd stop, point to the puddle and then to the sky and make noise and then I would verbalize it for him.  Tonight when hubby and I were putting him to bed, we were using the Peekaboo Barn app and when we came to the goat, he pointed at himself and said "Me!" and pointed to me and the goat again.  I said to him, "Did we see the goats today?" (we went to a farm) and he started nodding his head and pointing to the goat and himself.

He was loving the play dough this week!

Something I enjoyed watching this week is the way our two kids interact with each other.  Big Girl is definitely a help around here in helping Little Man learn new things.  I spent 15 minutes trying to get him to use his new motorized toothbrush (for sensory therapy reasons) and Big Girl just walked right in there and within a minute, she had him using it in his own mouth.  She never forgets to prompt him to say her name or to use words that we know he knows.  She congratulates every single milestone he does - she is his biggest cheerleader.  This week, she said to me, "Mom, I don't know if I should be learning my kindergarten stuff or speech pathology stuff to help Little Man.  What do you think is more important?"  I told her that everyone appreciates her help - however learning her K stuff was more important right now.

Shaving cream car wash!

So it has been a good week we are even busier - Cheer Camp for Big Girl and Little Man will have his first overnight by himself up at the beach with my mom.  I'm a little nervous for him to go without one of us or Big Girl - but I know it will be good for him and my mom to spend time together.  :)

Thursday, July 28, 2011

Summer is Not What it Use to Be

I love being home with my kiddos for the summer - it's a time for us to reconnect and to do the fun things like going to the beach, playing with our toys for hours on end, and our biggest decision is what are we going to have for lunch today.  In the past, there were times for me to craft and read for my own pleasure, while doing things with my kids.

Lately, with Little Man's diagnosis, our summer isn't so much as carefree as I would like it to be.  Our outings have to be cross checked with my Google Calendar to make sure I don't double book.  My leisure summer reading, has turned into reading about Childhood Apraxia of Speech or finding out new activities we can do to help Little Man come out of his shell a little more.  In my mother's guilt, I feel bad for Big Girl - she has to sit through or find ways to entertain herself during Little Man's therapy.  I have scheduled some summer recreation activities for her to partake in, but making sure we can get her there and pick her up is a whole other can of worms (thankfully I have a good friend willing to pick her up from Cheer Camp next week so I don't have to cancel therapy for LM).

Recently on an Apraxia board I follow - the discussion of how to do it all came up - the debate of the working mom vs. the SAHM mom and what works for each family.  It appears to me that many of the mothers are SAHMs, but then again, it is quite possible that the working mother doesn't have time to check or frequent these boards. ;)  They are super informative, however reading it all makes me overwhelmed...I go back to work in a month.  Big girl starts Kindergarten in a month.  I will be leaving my house at 7am and coming home at 4/4:30pm every day - throw in all these therapies and appointments - how are we going to manage?  Can I really sign Big Girl up for dance with all of these things going on?  With LM giving up his naps and starting daycare again where he is pretty much made to nap - how are we going to be able to get him asleep by 8pm so I can get some actual work and things around the house done?  Then I see the progress that LM has made in the month I've been home and I wonder - is it because I'm home and actively working on his communication skills he's made this progress?  Is it the Omega supplements I'm trying working?  Is it because he has more personal attention since he's not at daycare?  Or is it all starting to click for him because he's maturing?  I'm extremely grateful and thankful for his progress, but my fear is that it will slow down or he will regress when I go back to work.  When I say progress, I'm talking we have gone from 4 words/approximations to 12 words/approximations in roughly 6 weeks.  I'm glad where I have a job where I have my summers "off" (even though I had to say no to extra work and class opportunities to earn more credits).

Don't get me wrong - we have had fun this summer too - we've done our fair share of swimming (I can get over 50 approximations from LM in a 30 minute period when we're swimming in the pool!), visiting friends and family, going to the beach, was the first time in a long time where we just stayed home (after BG's yoga class) and played with our toys.  I guess in "growing up" and becoming a wife and a mother, I miss the time for myself.  I feel guilty taking that time for me - like I should be doing something else.  I definitely felt good last night going to my Aunt's house and having a few drinks - for 3 hours I didn't have to worry about putting kids to bed, researching more stuff on Apraxia, setting up LM's communication device/itouch, or reading books on how to help my child.  I just need to figure out how to do that more often. ;)

Friday, July 22, 2011

Fantasic Friday! #1

A recap of the good things from our week!

We were lucky to keep cool at the beach and friends' pools despite 90-100+ degree heat.

Hubby and I celebrated our 8th Anniversary on Tuesday!

We celebrated my dad's 65th birthday Wednesday night and we're looking forward to his Pig Roast Party tomorrow.

Funny comments from the Big Girl: she decided that she wants to grow out her hair and donate it to help children with cancer, like a friend of ours who passed away in April. While driving she turned to Little Man and said, "do you what to grow your hair to help kids like Alexander who had no hair? You could grow your hair to help Papa. He doesn't have hair on the top of his head, so you could grow yours to help him.". Yes, I pretty much had to hold my pee in on that one! Lol!

Accomplishments from the Big Girl: I noticed that one of her front bottom teeth was crooked on Wednesday. I asked her to come over and sure enough, I could wiggle it. Now I have dreams of losing my teeth during times of stress and so loose teeth skeeve me out...This morning she was wiggling it and it was bleeding...later she was eating a hot dog roll in the car (don't ask) and she lost her tooth.  She was so excited and talked nothing but how the Tooth Fairy was coming tonight.

Accomplishments from the Little Man: he worked hard this week in therapy. He has successfully said "mama" to get my attention without prompting. :) Yes, I'm super excited on that! We came up with a nickname for Big Girl "BeeBee" which he can say with prompting. The best way we were getting him to say it was the pool. She would sit on the steps and I would prompt him with, "Say, Go BeeBee!" and then prompt with " go" and "BeeBee" and sure enough he could do the "BeeBee". Yes, I have one very excited 5 year old as well.  We have both waited a 28 1/2 months to hear him call us something. :)  His EI specialist was very impressed with his skills this week and him building up on his previous skills.

Something new and absolutely hysterical  that Little Man will do is if I'm going to change his diaper or if I need him to sit still - he will crouch down and bend his knees, bend his elbows and quack like a duck.  I don't know where in the world he learned this - but it's pretty funny!

Here is to a great weekend and a new week! :)

Monday, July 18, 2011

Childhood Apraxia of Speech

We came home from our little vacation up in Maine today and in our mailbox was the final paperwork from the Children's Hospital we took Little Man to a few weeks ago.  In black and white, it stated that he does indeed have Childhood Apraxia of Speech (CAS) as well as Temperament variation vs. Regulation Disorder: Hyposensitive/Underresponsive subtype...basically in real language - he knows what words are - he hears them - he knows things have words, however he can not produce them right now.  It's a motor planning disability where he can not get his brain to function to his mouth, tongue, lips, etc to produce the sounds that make the words.  The second diagnosis...well, he's laid back, easy going, and passive - if he doesn't make the sound, for him it's not the end of the a classroom setting, he'd be seen as the "good" kid who doesn't talk out, doesn't call attention to himself, doesn't mind if he doesn't get his own way sometimes...he's always been our "good" baby - quiet, good eater, good sleeper, happy-go-lucky...and this sort of explains his passiveness.  The combination of the two is tricky - basically, he isn't motivated to make the sounds and would rather let others do it for him or just walk away completely.

So, what does this all mean?  We're not 100% sure right now.  He's going to get a ton of speech services.  Right now, he'll get 2 hours of speech a week from Early Intervention and an hour from a developmental specialist.  The specialists at the hospital want him to also have OT at least once a week and possible outside speech therapy an additional 2-3 times a week.  So we're talking possibly 5-7 appointments of therapy a week for our little guy.

Some things I do know and people who I know and love have been giving me a ton of advice, and I hate to be frank and vent - but this is what it does mean...I do not know when he will talk in complete sentences.  It's not going to just "click".  There is no instant cure for this.  We have no prognosis, except that with therapy it will get better, we just don't know how much better.  He's not going to "just talk when he's ready."  I don't want to hear from people who has a second cousin twice removed who's kid didn't talk until he was three and then started talking in complete sentences shortly after his 3rd birthday.  He may not be "typical" and potty train at 3.  He is going to grunt and point and DO NOT GET FRUSTRATED when he does this.  It is his current means of communication.  Feel free to try to get him to produce a sound and encourage him, but if he's frustrated he may not look at you and he may walk away.  His tantrums may look different from your kid's tantrums, but just because he's not yelling or screaming, he's frustrated and he's showing it in the way he can (even though it's nice and quiet). 

The past few days, I really thought about this - and any time I think about it, I cry...I guess I'm grieving through all of this - which is insane because it's not like he has a disease that will kill him - but when you hold your little baby in your arms, you have a picture of what things are going to be like and after 28 months, it's not completely what you pictured.  I look back at Big Girl's toddlerhood and much of her time was all about her talking and communicating with us.  It's difficult to hear silence from Little Man - people who know me know I love to talk and I love to hear others's frustrating to be with someone and not know their emotions because they can't verbalize them.  Yes, I can tell when he's happy or sad, but I don't know why he's happy or sad.  I can't ask him, "What would you like for dinner tonight?" without displaying predetermined pictures or prompts while I wait for a smile and a head shake.  Little Man is such a great eater - I would love to ask him, "What's your favorite food?  If you could have anything you want for dinner right now, what would it be?"  I can guess that it's spicy Mexican rice, or pasta, or chicken dipped in ketchup - but I can never be 100% sure.

We do know is that he's a very smart little boy - and I have the paperwork to prove it ;) He loves his family - especially if you are a male in this family, he will follow you around to learn everything you do - if you have a screwdriver in your hand, even better!  He loves trucks - his first word was "ruck" and you can hear him say it almost any time he sees one.  He loves our dog Buddy - he loves to cuddle him and kiss him and snuggle him, and thankfully, Buddy loves him back.  He worships his big sister - he will seek out her toys and want to play with her whenever he can.  He blows the biggest kisses and gives the fiercest hugs around the neck.  He loves life - he wakes up every day and doesn't know what's in store for him and he takes it all in stride to the best of his ability.  He has a great team of people who are going to advocate for him and be his voice until he can find his own.  He has parents who will fight for everything we can possibly give him so he can be successful.  He has the best big sister, who I know will look out for him and be his therapy buddy (whether he likes it or not). :)

Tuesday, July 12, 2011

"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.

Thursday, July 7, 2011

The Two Week Wait

Currently we are in the two week wait...Little Man had his evaluation at a big hospital in the city on 6/27 - his 28 month birthday.  Hubby and I brought him in by way of subway and surprisingly we met up with his EI developmental specialist on the train.  We met with the developmental pediatrician and a speech language pathologist, who asked us a ton of questions and asked Little Man to perform a bunch of tasks.  For a little guy, he stuck out most of it for the 2 1/2 hours, with only losing his cool the last 10-15 minutes.  There were a few things I know he could do, but he didn't do them for the specialists - but for the most part, he was himself - the quiet, cautious, smart little boy that we love with all our heart and soul.

The specialists were kind - as kind as you can be when you're being bombarded with questions that you answered 4 months ago in a 12 page document...they smiled and noted about our favorite Little Man behaviors - mostly his creativity in playing with toys and his sounds he makes when he's thinking or exerting himself...seriously, the kid will say "Ugh!" picking up a piece of paper off the floor - it's hysterical and the specialists thought so too.  Other than a few other notable things they said out loud - Our EI specialist, hubby and I could not read their thoughts.  We were told at the end of he 2 1/2 hours, "Thank you for coming in.  We will see you in two weeks where we will sit down and discuss our findings."

So now we are waiting to hear what these doctors have to say about our son.  Is this Verbal Apraxia?  Is this something he will outgrow?  Is this just a developmental delay?  Is it something genetic that we need to have further testing on?  How will this change what we're already doing?  We only have 4 more days of waiting, and luckily most of the time we've been keeping ourselves busy - but when things get quiet, or if Little Man is struggling to say something to us, or we cheer on a spontaneous utterance -- your mind starts to wander and wonder to what these specialists are going to say to us on Monday.  So for the next 4 days, we're going to continue to keep ourselves occupied with a trip to visit Nana at the beach, some swims in the cousin's pool, and maybe a trip to the zoo.

No matter what they say, he is still our handsome Little Man - who has the greatest belly laugh and gives the best hugs and kisses around! :)

* I should add - his EI specialist did say, "Well, waiting is better than them telling you right after the eval, Would you please come with us to the conference room - we can't wait two weeks to discuss our findings." So that is the bright side. :)

Hard to Believe

It's hard to believe that Big Girl is finished with PreSchool - just 2 years ago, this was her:

And here she is at her graduation from Pre-K:

She has grown so much (at least 7 inches!) and she has grown up so much!  Big Girl is an independent thinker - she loves to think out loud and wonder many different things.  She is creative and loves crafts and "projects".  She has a passion for money and saving her money to buy American Girl things.  She can figure out how many quarters make $5 in just a few moments.  She loves to be her own person and do her own thing, but she still loves snuggles and cuddles in the early morning or late at night.  Her favorite movie of the week is Momma Mia and she longs to go to a place where the water is blue - just like it is behind Sophie when she sings Honey, Honey.  She loves her brother, even though she will say she doesn't - but she has learned patience and compassion for him.  Just today she said to him, "I'm sorry I was so upset with you earlier when you used my toys.  I now can see how you were showing me how to do it differently."

I can't believe she's 5 1/2 and will be going to Kindergarten in the fall.


I love you Big Girl!