Saturday, December 24, 2011

Merry Christmas!

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Merry Christmas from all of us! :)

We are off soon to the Zoo Lights - our Christmas Eve tradition for the past couple of years, followed by a visit to my Auntie J's house (who took our wonderful Christmas card pictures).  Tomorrow the kiddos will open their presents here at home and we'll have Christmas Dinner at my parents house.  Later in the week, we'll celebrate with my In-Laws. 

The kids are so excited for Santa to come tonight and open their presents.  Both kiddos woke up this morning in a glorious mood, singing and laughing.  Bee-bee was making up a song saying, "Today is going to be a great day! It's a great life!" Cha-cha was doing his best to keep up. :)

Lately, we've been noticing Cha-cha having bouts of trying to talk, but he can't get it out.  This was bound to happen with the language explosion he's been having.  He tries so hard to tell us something, but we can't understand him.  We've tried to tell him to slow down, to repeat it again, and to try to tell us a different way - but it doesn't always work.  Hubby and I will look at each other and blame it on Apraxia.  He still is cracking us up - he was trying to find one of his many puppies this morning and I found it on the couch and I said, "Here he is!" to which he said, "Hi see!" for hide and seek.  Just proof that he gets it all, but just can't get it out.  At this age, Bee-bee had imaginary friends/cats named Pass-stone and Wanda - I said to Hubby last night that if Cha-cha didn't have Apraxia, he probably would have imaginary friends too.  He probably does have them, we just don't know about them.  Some days my wish is to just be in his brain for a day to know what he's thinking about.  We can get general ideas of his feelings, but to know his thoughts would be the best gift ever.  I have to remain thankful that we have made so much progress in 6 short months - but at the same time, we have a long way to go.

Sunday, December 18, 2011

Ch-ch-changes...

This week we had our big meeting with the public school system about Cha-cha.  With over 20 pages of documentation of testing and findings, hubby and I, along with Cha-cha's Early Intervention SLP and my aunt (who took notes so we didn't have to), entered the school not knowing what their recommendations would be.  I had fears of having to hire advocates and lawyers - visions of myself stopping the meeting until I could have a lawyer present...I had been plagued for weeks with nightmares of advocating for my child for the services that we believe that he needs.

The morning before went well - I dropped of Bee-bee and hubby dropped off Cha-cha and we headed together to the elementary school where we met up with my aunt and the SLP.  I walked up to the secretary's desk and told her why we were here and she looked beyond me and asked, "Are the parents of the child here?"  I was a little taken aback and said that I was indeed Cha-cha's mother and it was her turn to be taken aback - she said, "Oh, I'm sorry, you just look so professional looking."  I smiled and told her that I was here to discuss my son's future and I would hope that I would be professional about the whole thing and she commented that not every parent has that same thought.  How sad.

In the room, we met up with all of the people who have tested Cha-cha in the past month.  There were at least 10 of us around the table talking about him for 90 minutes.  The evaluators went around and discussed their testing and findings, the EI SLP gave her concerns and we were able to give ours.  Afterwards, Cha-cha was diagnosed with having a Communication Disability because of Childhood Apraxia of Speech, and he definitely qualifies for services.  I was getting antsy thinking about what I was going to fight for, when the Team Chair started spewing out all of the services I could have imagined for Cha-cha.  Integrated Language based preschool, speech sessions 2x30 a week with a third in class session, OT consult, PT 2x15, Motor playroom class...and the summer program.  I was amazed.  I started to cry.  My biggest fears of special education were relieved.  Granted, you don't want to hear about your child's weaknesses, but to hear about all the help they are going to give him - it was overwhelming.  Many times I have been the teacher at the IEP meeting, this was my first as a parent.

We now have some big decisions to make.  According to the public school - he can start on February 27th - his 3rd birthday.  Hubby and I had a lot of discussions with each other and people who are in the teaching profession, not in the teaching profession, and our family and friends - and we believe that it will be best to start him on his birthday.  The biggest issue is what is he going to do for 4 half days and one full day while hubby and I are working?  I have calls out to different daycares to see what will be the best fit for him.  Sadly, he can not attend his current daycare since it's not in our city's limits and the bus (yes, I'm going to have to put my son on a yellow school bus at age 3) can not take him outside of the district.  This will mean that he will have to leave the daycare he has been at since he was 6 months old.  This is the hardest part out of all of this.  I serve on the board of directors and the teachers have bent over backwards to help Cha-cha be who he is today - I'm just so heartbroken about leaving them, but I know he needs these services.  I know he needs to move on so he can make more gains.

We're hopeful that this will all help him, and that he will continue to make progress and friends.  I'm still in a little shock that we didn't have to fight for what we know he needs.  It seems that all I hear are stories of people who hire lawyers and advocates and have to reconvene 5 times before the IEP is signed. 

I'm so glad we went the route we did - getting a big eval at a big hospital, pushing the public schools to do every evaluation possible to get the big picture, increasing services to 6-7 hours a week with Early Intervention - all of those were huge factors in getting Cha-cha the services he needs to be successful.  I'm so grateful to the people who have given us feedback and encouragement. :)

Meanwhile - Christmas is coming and the kids are so excited - Cha-cha saw the big man in the red suit and wasn't afraid - especially after he gave him some toy tractors. ;)  He loves opening the doors on his chocolate countdown calendar.  Bee-bee celebrated turning six on Friday with her usual diva-like attitude.  Hubby and I have looked at each other at least 7 times this week and have laughed and smiled over the silly things the two of them get into. :)  There has been a lot more laughter this month and that always makes us grateful. :)

Wednesday, November 30, 2011

Being Thankful

The month of November has been very busy for us, especially Cha-cha.  This month, he has spent 4 Wednesdays visiting a local public school for his CORE Evaluation for Special Education.  Originally, they were only going to test him in Speech and Language, however we opted to go with the full CORE so that everyone could get the big picture of him and find out what would best suit his needs.  This process is not an easy process, especially with me being a teacher, and it's horrendous on your emotions.  I know too much and I feel like I am the evaluator's worst nightmare.  I know what I want for my child and you can't tell me differently.  I am the psycho who will call and ask a million questions and complain while doing it, however in doing so, I am heard and I know they also want the best things for Cha-cha.


Which brings me to the thankful part of all of this.  I am ever so thankful to my husband and my father, who accompanied Cha-cha to 3 of his test sessions.  Since both hubby and I work, taking him to these evaluations during work hours is next to impossible, especially for me.  For me having to take a step back in this process and let others do it has been both stressful, but good for me.  I've had to let others do it for me, which is never easy for me to do.  I am thankful to my other family members, especially my mother and sisters, and many friends who listen to me vent or hear me through when I'm thinking about the whole process.


Through this process, I've been reminded that I need to be thankful for so many things.  I'm thankful for our health insurance, and even though it's going up $2,000 for next year (don't ask), Cha-cha's outside therapies are covered with just a copay and he gets unlimited sessions for the entire year, as long as the paperwork is filed.  I'm grateful that EI is paid in full by our health insurance with no copays.  Thinking of having to pay for all of that therapy is mind boggling.



I'm thankful that Cha-cha has amazing therapists, who fell in love with him the moment they saw him and work so hard to see him succeed.  One of his therapists has been with him since he was 7 months old.  He loves her like an aunt.  His face lights up when he sees her.  She has been my confidant through all of this, taking my texts and phone calls when I have a question, and crying with joy with me when he accomplishes something.  We are so blessed to have found a wonderful SLP undergoing her Fellowship year, who Cha-cha adores.  On Saturdays, all you have to do is mention going to see "Eh-eh" and he has his coat and shoes and is ready to roll.  To hear compliments from his therapists like, "He is such a pleasure to work with!" and "He has great play and attention skills," make me feel good that we are doing it right.



Through this evaluation process, the head of the Special Ed Department visited Cha-cha's daycare/preschool and as soon as she left, she called me to tell me what a wonderful place it is.  I am very fortunate that my school system realized how important it was for teacher's children to have a wonderful daycare/preschool.  It took a lot of work on behalf of a few of the teachers, but the daycare/preschool is now into it's 3rd year of being a success.  Today, the SLP testing Cha-cha raved about it after hearing about it from her director.  Of course I knew it was great, but hearing from the specialists that have seen almost all the daycares around here, they have said that this school is like no other daycare/preschool they have ever seen.  As a working mother, to hear that about my child's daycare/preschool - it just reaffirms that we again did the right thing.  I have to say, I am thankful for Cha-cha's teachers - from the ones who rocked him as an infant to the ones who are teaching him to count to 10.  They have bent over backwards and learned to take direction from specialists coming in and helping them work with Cha-cha.  They occasionally send me pictures and texts of his accomplishments of his day and always give me a full report when I pick him up.  They know his quirks and have quickly become mind readers when he needs something and can't say it correctly.



I'm also very thankful for having a wonderful daughter.  We are learning that being 5 1/2 and in Kindergarten isn't easy sometimes, but she is taking it all in stride to the best of her ability.  She has become very patient with Cha-cha.  They have their moments for sure, but she is always modeling appropriate language and trying to elicit sounds from him all the time - just like his therapists do.  Seeing him say words makes me so proud, but hearing her yell, "That's great!  That was so clear!" makes me tear up.  Hubby and I say she is going to do great things, but honestly, she's already doing them.


 
We don't know where this evaluation will take us.  Cha-cha has come a long, long way from back in June when he only had 7 approximations.  Just the other day, he counted to 5 on his own and told me to, "Go car momma" (guh ka ma-ma), when he wanted something from the Toys R Us flyer.  Hubby and I have a lot of decisions to make on what is going to be best for him and for us.  I'm not good with change and uncertainty.  We'll be doing a lot of talking, thinking, and praying about it all.

Friday, November 11, 2011

TV Watching Increased My Son's Vocabulary!

Yes, sounds like a National Enquirer headline, but it's true.  Since increasing Cha-cha's tv watching, he has added many new words and phrases to his vocabulary...

Tee-tee= TV
Ca Doz = Car Dogs AKA Turbo Dogs
mote ca = Remote Control
fa=fast forward
staw=stop
NO!= No, that's not Turbo Dogs!
cha= Change the channel to Turbo Dogs
mo doz= more Turbo Dogs
Aaaah!=It's a commercial in between Turbo Dogs. Fix it now!

Yes, not only are we now obsessed with TV, but we are obsessed with Turbo Dogs. :)

Monday, November 7, 2011

A step forward, a step back and drawing the line...

Cha-cha is working so hard in his therapy and day to day life trying his best to talk more.  He is doing a lot of copying what we say and trying to answer more questions when we ask them.  At school, he is talking more than he ever has - even joking around telling his teacher that only Daddy and Bee-bee sleep at home and that Mommy sleeps in the car.

The difficulty we've been having lately is understanding what he's saying.  With the increase of vocabulary and words, the ability for us to understand his intelligibility has decreased.  Thankfully for now, his frustration hasn't increased, or we'd really be in trouble.  It's just that sometimes, my super powers for reading minds fails me.  Cha-cha will say something and I just look at him and nod my head in agreement, hoping that I'm doing the right gesture.  School and his speech therapists are also noticing this.  Thankfully, he's a laid back kid, who doesn't seem too bothered by it - but it's frustrating for everyone involved.

An area we've made progress on the past week is Cha-cha's sleeping.  Since August when we took the crib away, Cha-cha's been sleeping in our bed or falling asleep while hubby has been driving around.  It's been exhausting, and hubby and I came to our breaking point and made him cry it out last week.  It sucked, but last night he actually didn't even protest when we put him in his bed and shut the door.  Tonight was easy too - he only came to his door once to open it.

Something I'm struggling with is dealing with a child with CAS and SPD.  Don't get me wrong, we could be dealing with a host of different issues and we have a very healthy boy on our hands...but the looks from others when he's laying on the ground, the comments of him not talking or "when is he going to get better?" - it hurts.  Maybe people aren't staring, maybe they're admiring my children - but sometimes, when my sh*tty committee is working overtime, any stare or gaze in the direction of my children feels like a pity look.  Hubby usually tells people he's shy; my way of dealing with it is to talk about the CAS and SPD, however I usually get blank stares or the questioning of, "Oh, he'll talk and be normal...right?"  I think when I'm feeling upset about it all, I may need to use hubby's "shy" route.

Lately, we don't know if Cha-cha's refusal to put on shoes or wear a winter coat is from his SPD - it could be, but at the same time, I think this 32 month old is playing us.  He'll put on a coat for a bribe or for his teachers at school, but for us - he refuses, then he will go outside and lay on the ground and say his word for "cold" and look at you with a disapproving look.  You want to scream and yell - but it doesn't make the situation any better, so I tell him that it was his choice not to wear a coat and move on.  However that moving on thing is hard - especially when you have a 38lb, 40 inch 32 month old that refuses to walk.  Have I mentioned that we have a giant for a son who also has low tone?  So when you carry him, he is dead weight.  He doesn't wrap his arms around you or shift his legs around your hip - he just hangs.  I've resorted to the stroller - but again, he's so tall, he can put his feel on the wheels and stop the stroller from moving, which leads to a pop-a-wheelie ride on the back wheels.  Graco and Chicco need to start making strollers for giant kids.

It's a frustrating thing, having a child with special needs - no matter what the disability is...it's hard as a parent to know what's the disability and what's the personality.  How much of all of this is being two years old?  How much do you need to take with a grain of salt, and how much should you really pick your battles?  You never want to say, "Forget it," because that would be turning your back on your child - but at the same time, you don't want to spoil them and ruin them for life because you gave into him not to wear his coat.  Then again, who's life has been ruined for not wearing a coat?  All the time, I question myself with, how much can he really do vs. what can't he do?  Do you make the excuse that he can't, or push him because you want him to do it just like the other "neurotypical" children?  However, you have to remember and accept that he's not neurotypical.  You have to redefine what is "normal" and if you have previous children who are neurotypical, you have to rewrite that definition...and you will probably second guess yourself a million times. ;)

Sunday, October 30, 2011

Cha-cha Cooking

One of Cha-cha's favorite things to do is to cook.  He loves helping pour the ingredients in and mixing it up with the hand held mixer.  This morning, he was doing a lot of talking - a lot of it is very difficult to understand.  At one point, I don't know what he's saying, but he sure is trying hard to explain himself. :)

Thursday, October 27, 2011

Trick or Treat

It's that time of year - Halloween!  I have been busy making Bee-bee's Rapunzel costume - all that is left is to hot glue gun flowers to her long braid.  She can't wait to wear it to school and show it off - she is even more excited to wear it to Cha-cha's therapy appointment before we go and show Miss E her outfit.

Cha-cha, well, being excited about Halloween is difficult when you don't understand what's going on.  We have asked him and showed him pictures of costumes - I've taken him into Target and stores and he turns his nose to everything.  Last year we tortured him and put him in this big fluffy dog outfit and he hated it about 50% of the time he had it on.  He refused to put it on at school and he ended up wearing a fire fighter dress up outfit.  This year, somehow, we got him to say yes to a garbage man, but any time you ask him, he says no.  So I made up two t-shirts and I'm praying he will put one of them on tomorrow at his preschool/daycare.  One is a yellow shirt with a zig-zag like Charlie Brown and the other is a green shirt with a "WM" on the back like a garbage man. 

We explained Trick or Treating to him and tried to get him to say "Trick or Treat"...right now he either refuses to say it or will say, "reet" and walk away.  I'm pretty sure he'll "get it" when we are out there getting candy, but for now, I don't know how much he understands about all of it.  Who knows - is he afraid of having to say something to get the candy?  He still doesn't say "Thank you" out loud - he signs it.  So it will look like the garbage man is blowing kisses...which is sort of funny.  Thankfully, we are very friendly with our neighbors and they all know Cha-cha and will love him regardless if he's wearing a costume or not.

Today a coworker gave me the idea of having him hold up a sign that says, "Thank you!"  I don't know if he'll last more than a half dozen houses, but if he does, I think I'll make one and bring it along.

Thursday, October 20, 2011

Sick Days

When my cell phone or my classroom phone goes off, I always cringe until I see the caller ID...if the daycare number shows up, my heart beats a little faster, my palms start to sweat and my stomach instantly goes upside down.  Hearing the "Hi, it's so and so from Sprouts..." can make me stop dead in my tracks.  Being a classroom teacher, it is painful for me to get coverage and leave my class, knowing not only do I have my own two children, but a class full of students who are also depending on me. 

When Cha-cha is sick, it means an instant doctor's visit.  Not only can he not verbalize how he is feeling, but he feels no minimal pain.  Scratches, fevers, ear infections that are deemed, "The WORST raging ear infection I've ever seen!" feels like nothing to our little guy (Yes, I have heard that ear infection line at least 3 times out of his 6 double ear infections).  Once with a 104.6 fever, he was running around the nurse's station at our local emergency room and the doctor came out and said, "That's not right, he should be lethargic with that fever."  Yes, my Cha-cha is not your typical child.

Today I got that call - actually, I got about 3 calls because my cell phone was not getting reception in our new school's computer lab...my phone voicemail went off, I listened to my message, called and got disconnected, the school secretary then called the lab and finally they got a hold of me in the lab...granted it took a total of 3 minutes, but knowing they were calling because Cha-cha wasn't feeling well, felt like an eternity.  Of course in the midst of this, I'm suppose to be co-teaching a lesson on the Pilgrims to 38 students...According to his teacher, Cha-cha had a 101.6 fever and just seemed "off."  Thankfully, it was the end of the day and I just had to dismiss my kiddos and make the frantic phone calls before getting him. Who can watch him tomorrow as I venture off on a field trip with my other 18 kiddos?  Can I get a doctor's appointment before picking Bee-bee up and contaminating her in the waiting room office?  Luckily, I only had about 4 students left in the classroom as they were waiting for buses when I got a hold of my dad and secured care for him for tomorrow.  One of my students said to me, "Wow, he must be really sick Mrs. K.  That was really nice of you to find someone to watch him tomorrow so you can come with us on the field trip."  Yeah, how can you not love your job when your students appreciate the hard work you put in.

Thankfully, Cha-cha's fever is just a virus - he's well hydrated, happy, running around, eating, and annoying his sister.  I felt like an idiot bring him in, but the doctor told me I did the right thing.  When a kid can't verbalize, he told me I'm better off bringing him in and having him evaluated than just waiting around and not knowing.  I have to say, it stinks having to bring him in for every little thing - but how else are we going to know what's wrong?  He can only say so much.

My FB status this afternoon was, "Days when my kids are sick make me hate being a working parent."  There is nothing more than wanting to be with your child and care for your child when they are not feeling well.  Knowing that I have responsibilities elsewhere, makes it extremely difficult.  Hopefully, knowing that tomorrow 18 students will have a great experience because I'm with them will make that feeling go away - even for a little while.  Thankfully, we have some great people in our life who can help us out in times like these and care for our kiddos like they are their own and make working while our kid is sick a little more bearable. 

Wednesday, October 12, 2011

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. :)

Wednesday, October 5, 2011

Christopher Columbus from a Kindergartener's Point of View

Bee-bee drew this picture in art class:



I told her that I loved her ship and she said, "We're learning about a long, long time ago - 1982!  This guy was trying to find India from Libya.  One of his ships was called the Santa Maria.  That's what I drew.  It's a sunset.  The art teacher told us that we had to draw an island on it, can you find it?"

Later on, she told me that Christopher Columbus came here for the following reasons, "To get gold.  Gold and food."

And that folks is why we have Monday off.

Saturday, October 1, 2011

We made it through September!

Yesterday was the last day of the month - and we made it!  We have all been back in school for at least 4 weeks and the house is still standing.  With one exception due to an unexpected doctor's appointment, everyone has made it to work or school ontime!  No one had to take a sick day (watch, next month there will be 5) and despite a minor cold for me and allergic reactions to mosquitoes for Cha-cha, we were healthy!  I call that success!

My school year is going well - I'm loving the transition to a lower grade and I really love my students.  I love their excitement and enthusiasm.  They get excited about the littlest things and I love that!  I'm enjoying my new team and they have made the transition so easy for me.  I have never been this organized in my 9 years of being a classroom teacher - granted, I had a brand new empty classroom to start with - but they are so on top of photocopying and planning that I never feel like I'm flying by the seat of my pants or rushing to get things done.

Bee-bee is doing well in school - maybe a little too well...I went in to talk to her teacher about her and one of the things I mentioned is that she is a little bored of the school work.  Thankfully, the K screening is this week and I'm hoping they are going to be able to differentiate lessons so she is challenged.  Sadly, no one signed up for the art class she wanted to take, so it was canceled, but she is signed up for Daisys and if no one steps up to be the troop leader, I'm going to do it.  I feel bad as she needs something to look forward to and she doesn't want to do dance, she can't do soccer until the spring, and we missed the boat for swim signups.  She is making friends and has a best friend in her class already - her mom and I are playing phone tag, but we hope to get the girls together for a playdate soon.

And then we have Cha-cha...this has been a good month for him in a lot of ways.  He has gone from sitting by himself and hanging out with the teachers during outside time, to running and chasing the kids in their unorganized tag/chase games.  When he wants to join in on an activity, he points to himself and yells, "Me!" and rarely gets a teacher to help him join in.  His language is making progress in many ways.  He doesn't have too many new words, but he's using his old words more and more.  Recently we've heard a few 2 word utterances such as, /ma-ma coo/, /bee-bee coo/, and /cha-cha coo/ for Mama's school, Bee-bee's school, and Cha-cha's school.  He also has said /shz uh/ for shoes off and the other night we heard /go ca peaz/ for go car please, when he wanted to go for a ride.  He is learning his colors and can say in his own way, yellow, purple, blue and pink.  His new greeting is the French version of hello - /allo/ - it is freaking hysterical, even when he's suppose to be going to sleep and he pops up and yells, "Allo!"  It constantly makes hubby and I laugh.

An exciting thing happened this week too during his EI SLP session - she came in with the OT and we were chatting, Cha-cha pulled out some of her toys and started scripting his own play with a ball toy - saying /up/, /go/, /duh/ for down, and /eh/ for in with no prompting.  Then he took out the farm animals and started making them eat saying /num-num/ and saying some of their sounds without prompting...his SLP burst into happy tears and said, "I've never seen him do that on his own without any prompting!"  Of course, this is something we've been working on with him for over a year now - and he can finally do it on his own.

Of course, then you have setbacks...we are currently in a sleeping hell with Cha-cha - he won't stay in his toddler bed and he won't stay asleep.  For the first two weeks of school with all the craziness, we were sitting outside his bedroom for a good 2 hours and were getting nowhere.  We drive him around to get to sleep and he wakes up an hour later (at 11pm).  If he happens to fall asleep and we move him to his bed, by 3am he is up and wanting to come to our bed.  It was never our intention to have him sleep with us - but we were desperate - we all needed to get more than 5 hours of sleep a night - and now we've created a small monster.  On top of that, we've seen his sensory issues go to another extreme at night - it's almost like we spend all day long getting his motor running, that in the evening, you can't stop him.  He tosses and twirls and flips in his bed - he's wired.  Thankfully, we are starting sessions with an OT next week and we're going to be looking at some brushing techniques to see if that will help calm his motor at night, as well as looking into a weighted blanket for him.

Another issue is that he's not excited to see his therapists come to his school.  When his Developmental Specialist, who he has seen since he was 7 months old, comes to daycare he runs to the door and tells her to "Go!" and "No!" and "Bu-bye!"  Eventually he will work with her, but he's very slow to warm up.  Same with his SLP - he's starting to tell her to "Go" and doesn't want to work with her.  His outside SLP, when she pushes him, he pushes back and tells her to "Move" and "Go"  Granted, we're excited that he's communicating his wants, but at the same time, it makes everyone wonder if we're pushing him too much.  I would say that at least 50 minutes out of the hour sessions, he's working and enjoying himself - so for 10 minutes of discomfort for everyone, he does get into things and is laughing and playing for the rest of the time.

Now we're on to a new month - we're going to keep doing the things we're doing in terms of therapy with Cha-cha and add some OT to see if we can keep things going in the right direction.  We're going to try to let him cry it out for sleep so we can have our bed back.  I'm going to start a homeschool math curriculum with Bee-bee to try to challenge her.  We're going to enjoy the fall weather and do apple picking and fun fall things. 

Wednesday, September 21, 2011

Clothing and Shoes for Girls

Clothes shopping for children is extremely complicated. 

Bee-Bee is a very tall girl - right now, she is measuring 49 inches and she is only 5 1/2.  Right now, her current size could be a 6, 6X, 7, or 7/8.  It all depends on the manufacturer.  Last night, we were at our local Kohl's and some of the young girls section went to 6X and some went to 7, head over to the girls section, and they start at a 7.  The size 7 sweatpants from the young girls did not match the size 7 from the girls section, yet they were made by the same Kohl's company. 

Now Bee-bee doesn't like sweatpants, however it was the ONLY non-slutty clothing I would agree to put her in.  Yes, for some reason, slutty is in for the 5-7 crowd.  Don't get me wrong, I don't mind a little black on a child - I find black leggings and an bright colored tunic adorable.  But rhinestone black leggings and a skin tight (even at a size 8) shirt, that will barely cover her bottom that has more rhinestones?  Yes, we stepped away quickly.  If it's not the black, it's the fake shirt underneath the sweater look.  I've never understood why an adult choose that, never mind for a kid.  It will never look like a true layered look.  It will always look like a sweater with fake sleeves and a collar sewn in...oh and did I mention that it was in black?

Right now, we are very blessed that she is in love with her smocked dresses and any dress that twirls and spins around and shows off her leggings underneath...yes, I make her wear leggings as she wears Princess undies (the only character clothing I will ever purchase her - character clothing is another whole rant of mine).  I have told her that she has to wear leggings under her dresses, because if I ever get a call from school that she was showing the "Princesses" to others, I would be mortified. ;)  Last night, seeing her skip down the aisle of Kohl's in her back to school, apple smocked dress made me smile - she still is a 5 year old.

And shoes...for some reason, Bee-bee thinks that wearing her white summer sandals with her brightly colored socks that Nana-bee bought her is amazing.  I've tried to tell her a million times (ok, maybe only 10) that her new found "look" is not a great style.  She has two pairs of good, sturdy school shoes - black maryjanes (with no rhinestones, twinkle lights, or glitter) and a pair of sneakers that I was blessed to find with elastics and no laces (who knew they stop making velcro shoes at size 13...sucks for my size 1 kid!).

Last night, she was trying a bunch of shoes on while we were shoe shopping for Cha-cha.  I almost died when I saw her putting on high heels that pretty much fit her foot.  All of the shoes were slip ons and therefore right up her alley.  She saw the Twinkle Toes shoes, but oh man, $45 for a pair of sneakers that light up the night sky is just a little too much to pay.  For some reason, her last pair that I got on a huge sale, ripped at the toes in just a matter of a few weeks.  Yes, they are adorable, but not if they are going to wear out so fast.

Sadly, Bee-bee didn't get anything new last night.  I reminded her that she has a closet full of new dresses still and leggings to be worn underneath them.  She smiled and said, "Oh, yeah!" when I reminded her.  My 30% off coupon went to Cha-cha and his new sneakers and 2 outfits.  His only requirement for clothing?  That it be comfortable and have a graphic of a car, truck, digger, airplane, or rocket ship.  Very easy to do in a 4T! :)

Sunday, September 18, 2011

Apraxia Walk 2011

Yesterday was an emotional day for me...we headed up to another state to walk in the 2011 Walk for Children with Apraxia of Speech.  Our state doesn't have a walk, so I chatted with Sharon from CASANA and she asked if I would like to start one in our area...as much as I would love to not have to drive an hour and 15 minutes out of my way, I don't have the time to do organize a walk.  So instead we headed up and met with over 100 other supporters at a beautiful park on the ocean.  It was comforting to know that there were other kids just like "Cha-cha" (what our proud son now calls himself - a wonderful nickname for the blog instead of "Little Man").  There were parents, siblings, and family members there who had been through the same stuff like us - the testing, the waiting, the therapy, the tears, the cheering, the tantrums, the questions...very overwhelming.

We had some wonderful family members there to help support our "Chatterbox" team - Hubby, Bee-bee and Cha-cha, Nana-bee, Great Auntie J and Uncle P and their dog, Pepper (or Pep-pep as Cha-cha calls her), Gramma and Grampa K, and Auntie K and our cousins V & E.  It was great that they could all join us!

At the beginning of the walk, Cha-cha grabbed my hand and started off...and a beautiful monarch butterfly flew over us and that's when I pretty much started to lose it...butterflies and bees appear at very random, yet significant times of my life (I'll never forget seeing a bee in Bee-bee's nursery a week before she was born - in December, or having a bee go up my veil on my wedding day and to have a butterfly land on my wedding bouquet an hour later)...of course I would lose it again at the end when they read the book, "My Brother is Very Special" - I book written from a sister's point of view about her younger brother with CAS.  Hearing about how kids don't want to play with him because he can't talk, hearing about the obstacles the brother has to face - like other kids taking away toys because the brother can't tattle, going to therapy instead of football practice - this is the long road ahead of Cha-cha. (Although secretly, I'm excited that this could coincide with football and he won't be able to play)  It was good to hear from other parents who are also working through their struggles of accepting and dealing with CAS.

The mile walk itself was pretty uneventful - lots of bright orange shirted big and little people walking, running, biking, riding in wagons and strollers, going around a beautiful common by the ocean.  Bee-bee pushed her stroller with her baby Jewel and Cha-cha pretty much walked and ran the whole thing with only a short neck and shoulders hold-y from Daddy.  I think his favorite parts of the day was collecting rocks, going down the twirly slide and digging in the sand.  I don't know if he knew we were walking for him, but later on in the day, I asked him my routine of questions..."Who's mommy's boy?"  "Me!" he yells..."Who does mommy love?" "Me!", I glanced at hubby before asking the question I've never asked before and asked Cha-cha, "Who has Apraxia?" and he beams and yells, "ME!" 
Cha-cha walking - he wanted to show off his new digger shirt instead of the Apraxia orange one :)
A touching moment for me was observing the mothers of the children with CAS.  Despite the fact that their child has difficulty speaking, the mothers are very in tune of what the child's needs and wants are...I met other mind readers like me!  One of the coordinator's son, who has CAS, was fussing and someone called out, "What's wrong?" and she knew that the little bit of marker on his hands were bothering him.  Another mother who was speaking in front of all of us just glanced over to her son and said, "Can someone please take him to the bathroom?" into the microphone.  I don't want to take away from the fathers or other supportive family members - but mothers always have a sense of intuition - even if your child doesn't have a disability.  Thankfully, that intuition kicks into high gear when you have a non-verbal child and you start to possess that mind reader-rockstar quality to the 10th degree.


It was a beautiful day...I appreciated spending time with our family, taking in the fresh air, and seeing other families just like ours. 

Thank you to all of you who made donations on our walk page - I was actually the third place "winner" of the most donations...the Chatterboxes were the 4th place team over all!  CASANA will use most of that money to train SLPs, public schools, and other professionals about Apraxia and how to help treat children who have it.  Sadly, many SLPs do not have the proper training in the techniques to help children with Apraxia.  CASANA hopes that not only can we find a way for kids to not have apraxia, they also want people to be educated about it and know how to treat it.  Thank you for your support.

Wednesday, September 14, 2011

Whirl Wind Wednesday

We are in the middle of the week - WEDNESDAY!  My things are going fast - I don't think I've ever been this exhausted...well, yes I have, but it's been a long time since I felt this way.  School is in full swing and I am so happy that I made some big changes in my teaching career last year.  Teaching a new grade level has been refreshing and fun.  Even today when I was getting tired of asking a few students to do the same thing over and over - I reminded myself that I was enjoying where I was, who I was working with, and loving my new students.  I had a parent phone call after school that made me smile and it sealed the deal that this is where I'm suppose to be.

At the same time, our after school life is a little crazy - two different pick ups, therapy, art lessons, and now I'm trying to throw swim lessons into the mix - add the "regular" things like lunch making, dinner, baths, homework (for K! eeek!), and bedtimes and I'm lucky to sit down by 8:00pm. 

Bee-bee is loving school and when I find time to find my cord and upload pictures, I have a few cute ones of her first day of K.  She loves her teacher, she loves learning her letters (that she's already learned), and she loves commenting on other kids' behaviors...yeah, that one I need to put to rest soon.  Being a teacher, I love how she comments on how her teacher runs her classroom - she is fascinated that the tables have the same color chairs, so the teacher only has to call out, "Will the yellow chairs please line up..."  She loves her mailbox at school where she gets her daily forms for mommy to fill out and return the next day (seriously, how many more forms can I put my name, phone number, and emergency contact on?).  Yes, I think we have a future school teacher on our hands.

Little man is plugging along.  I think he is finally opening up at school.  They are hearing more sounds and more word attempts than the first week where all I think he did was sign and gesture.  He really is a trooper.  Yesterday, we have no idea how this happened, but he was bit by a nasty mosquito at least 15 times on his face/head and back of his legs.  He looked like he was left outside overnight for 10 hours, yet he was inside all night, sleeping right next to me (yeah, this bedtime/sleeping thing requires a whole post in itself).  Hubby ran some benedryl over to him and he seemed fine all day - never once scratched or complained.  The "blessing" of his SPD means that he doesn't feel light pain.  He could get a minor cut/scratch or bite from a bug and not feel it.  He currently has a scratch on his foot and we have no idea how it happened - all we know is that it happened at home and between a certain time frame, but when it happened, he never shouted, cried, yelled, or showed us.  I just noticed it on his foot with a little blood.  We go to his pedi on Friday (yet another thing to add to my afternoons) and I'm hoping she can help us out with these ballooning bug bites and seeing if she has ideas of his lack of feeling minor pain. 

Other than that, we are plugging along - he is definitely pushing himself more in his therapy and he really loves his outside therapist, Emily.  All I have to say is, "Do you want to see Miss Emily?" and he is running for the door.  When we get there, he insists on pressing the elevator button and I pretend I don't know where I'm going and he thinks it's the best thing on earth as he shows me where to go and yells, "ka!" (come) as he runs down the hallway.  We're really lucky that we found her.

We have a big weekend coming up - more about that later!  Time for the Whirl Wind Wednesday to start! :)

Monday, September 5, 2011

Back to Work...

The end of summer is a tough time for me - anxiety starts to creep up around the beginning of August as the back to school sale signs come out (this year, they started around the 4th of July).  I am blessed to have a job as a teacher - in this area of the US, it can be pretty hard to find work as an elementary school teacher - I really like my job, I love working with kids and I love seeing children grow and learn...however I'm doing that with someone else's child and not my own kiddos.


My dream job would be to be paid the same salary and work part time teaching - it's just not possible for us to live with out my salary.  Living where we do - close to a major city with an expensive housing market, and living within 2 miles of our jobs, we are very fortunate.  However, going back to work is nerve wracking after having two wonderful months off of "work" with my children (because even though my 7-3:30 job is over, my job is a mother is never over).  Every fall it's hard.  Hubby always comments that my worst two months are September and June.  It's true, the stress level is high, trying to coordinate schedules and child care is crazy - and I can pretty much guarantee that both children will come down with some weird illness within 3 weeks of school (two years ago, it was the first day of school) and require me to take a sick day.

I think what makes this year different is having a child go off to Kindergarten.  Luckily, her teacher is a parent of two former students I had the pleasure of having.  This parent is a wonderful mother, so I know Bee-bee is in very good hands.  I know that she will be just fine there - my biggest fear is that her creativity will be stifled.  She is a naive child in the sense she has been sheltered from  Nickelodeon and the Disney Channel - she's pretty much been a PBS kid.  Seeing commercials for cleaning products on Animal Planet intrigues her and she begs me to buy them so our house will sparkle and shine.  I commented to hubby the other day that I fear our house has more technology than the school she's going to.  He was kind to point out that since we do have the tech in the house, she will be fine.  During our visit in June, they had 1980s Letter People on the wall and no active school website or blog.  Despite these setbacks, they still produce children who are successful, so they have to be doing something right...right?



Another fear of going back to work, and I know I've discussed it on here before, is Little Man - seeing his progress, I fear him regressing.  I think that last week, he managed to get through the three days with just gestures and signs.  I doubt he actually said a word all day long.  One of his teachers commented that he got angry with her and he did a fantastic job signing go, no and then help - all words he has "sounds" for.  I gently reminded that he can use sounds and should be prompted to use them.  His sleep has already been messed with - he's napping at school anywhere from 45 minutes to 90 minutes.  This summer, he barely napped - which meant he was in bed by 7pm...now even putting him to bed at 7:30pm, he's rocking it out in his toddler bed until well after 10pm. 

(One of our 10:30 rock out sessions)

Even though I miss my children greatly when I'm at work, the time goes by very fast and I work with wonderful kids who challenge and teach me.  Working with my students helps me be a better parent, just as my own two children teach me to be a better teacher.  For example, before this summer, SPD was just something I read about on IEPs or was talked about in conversations with specialists and examples of strategies were given to me to use in the classroom.  I had no idea that there was SPD with an underresponsive subtype.  I spent a lot of my summer reading about kids with Apraxia and SPD, as well as other neurological impairments - having a child with special needs has pushed me to learn more about the subject.



So as I head back to set up my classroom tomorrow, I have many mixed feelings - I'm excited about my new grade level, new grade level teammates, and brand new school.  I'm excited about hosting a student teacher in my classroom.  I'm excited about building a classroom community with new students from other schools.  I'm excited that my Big Girl is excited about Kindergarten and learning.  I'm excited that Little Man is getting social interaction with language-rich peer role models...at the same time, I'm sad that someone else gets to experience my kids for 6+ hours a day...I know it's important for our children to grow wings and be part of a "village" so they learn and grow - but it's hard not being there to see it happen first hand.  At least I have my late afternoons, evenings, weekends and vacations to saviour my children - for that I am truly grateful. :)



Here's to a wonderful summer - we laughed, we played, we learned, we created...we frolicked at the beach, played at nature's playgrounds, and saw friends and family.  Here's to a great school year - may it be productive, enlightening, educational, and fun!

Big Sister Interview

Bee-bee starts Kindergarten on Thursday, and I thought I'd interview her for the blog.  When I told her, she asked, "What's a blog?"  I told her it's where mommy writes down her thoughts for others to read and she said, "Oh, that's good."  Here are her thoughts...

What was the favorite thing you did this summer?
Canobie Lake Park!  I liked the flume ride when you go down in the log and get wet.

What's your favorite movie right now?
I like Momma Mia.  I like the wedding part and the S.O.S. song.

What's the best thing about being a big sister?
Nothing.

What's the hardest part about being a big sister?
I have to watch him and make sure he doesn't get into my things.

What's your favorite thing about your house?
I love my new bedroom.
What are you most excited about starting Kindergarten?
Lunch.  I'm excited about buying my own lunch.

What are you a little bit nervous about?
I'm a little nervous about...I don't know.

What's your favorite food?
Cereal and milk in a drink bowl.

What's your favorite drink?
Apple Juice.

Favorite toy?
Jewel, my American Girl Bitty Baby.

What do you hope for?
To buy things at the American Girl Store.

What do you enjoy doing?
Playing with my American Girl things and doing projects.



Yup, that's her in a nutshell!

Saturday, September 3, 2011

The Generosity and Kindness of Others

Up until this year, I have never really participated in charity walks...I did the education walk in my school district, but it just required a one time donation, not asking or begging the people I work with or friends and family for donations...my kind of fundraising.  I'm lucky that my husband runs a sports card and memorabilia show, so in the past when we walked for a friend who has MS, he was able to put together a charity table to raise money for our walk.  I have never been good about asking others for money. I think in high school, I just paid the $50 for the two boxes of chocolates I was suppose to sell in Keystone Club ( I wonder if my mom ever found the leftover boxes when they moved).  Well, earlier this year when my good friend's son passed away from Neuroblastoma, she mentioned she was getting a team together for a walk to benefit the hospital, and sure enough, I was asking for money...thankfully, with technology it's very easy to ask and post the link on Facebook. 

Since Little Man's diagnosis of CAS, I looked around for a charity that supports children with CAS and their families.  I was so grateful to find CASANA and learn that they have walks all over North America.  Surprisingly, they do not have a walk in Boston - the nearest walk is in Portsmouth, NH or Connecticut.  I contacted about a walk in Boston, and I was asked if I wanted to plan it...well, I have too much on my plate right now with going back to work, figuring out schedules and keeping a house - I really couldn't say yes.  So we'll drive up to NH for the day to join up with other families who have children like Little Man and walk to honor them.  My main goal in doing this is to meet people face to face who are going through the same issues that we are and to celebrate these precious children.

I have been blown away by the generosity of our friends and family and some people who have never met our little guy in person, have graciously donated money in his name to help support CASANA.  It brings happy tears to my eyes to know that people care to support this important organization.

I have to say, this is not the only way to support the children who have Childhood Apraxia of Speech and their families - or other developmental disabilities that families are dealing with.  Recently, just spending a night out with another mom and old friend, who has gone through different but similar processes of EI and transitioning to public school was amazing help and support to me.  Talking, shedding a few tears, and knowing that we're not alone in this process was very therapeutic for me.  Lending an ear and being an outside supporter can be amazing help.  Recently a friend I hadn't spoken to in a long time wrote me to tell me what a great job we were doing and reminding me to make sure I take time for myself was very good for me to hear.  Of course I hear it from the people around me - but hearing it from someone I haven't really seen in over 6 years was so uplifting.  Finding caregivers who can be patient and willing to be able to care for a child with any developmental disability can be extremely tough.  We often lean on grandparents for that support, but it can be just as tiring and difficult for them.  Thankfully, Bee-bee's old at home daycare provider was able to provide time for me this summer to get things done at home and at work.  She has all the care and patience in the world to work with our two kiddos - although I sometimes wonder if the older one was more of a challenge. ;)  Knowing that people are praying for us is also very comforting.  In high school, I was very active in many Catholic and Christian communities, and thanks to Facebook, I have been able to reconnect with many of them.  Getting little comments or emails of hope or encouragement helps when things aren't going so well, and hearing the praise and congratulations when things are going well keeps the positive energy going.

I have to say, having a child with CAS is not a terrible, horrible, bad thing - even though sometimes it may feel or seem that way.  Yes, it is not something you want your child to have - but looking at the other disabilities and illnesses out there - we are blessed.  Knowing the other people who are in "Holland" with us, sometimes I feel like I did make it to Italy.  I feel fortunate to have the help and support of my husband, my family and friends.  We're lucky that I'm in the education field and in this day and age with computers and technology, we can do research, connect with others and find applications and programs to help our Little Guy.  We are fortunate to have jobs that provide us with insurance and means to pay for additional therapies to help him.  I know I feel lucky to have such a creative child who works so hard to show us what he wants to say and he has a big sister who is a great role model of communication.  Our family has a wonderful teacher in this little 2 1/2 year old body, who teaches us that there are other ways of communicating your needs, wants and love instead of saying it. :)

Today I'm taking that advice from my long lost friend...pedi and back to haircut for mom, (all alone) is on today's agenda! :)

Tuesday, August 30, 2011

First Day of School for Little Man

Little Man's first day of school was delayed by Hurricane Irene, so today was his first day.  I was so happy I met with his teachers last week to touch base with them about his diagnoses and therapies.  They were extremely accommodating and put my mind at ease.  Of course, this didn't stop me from being emotional and sad today.  Last night I wrote up all of his words/approximations and he has 27! not including 7 names.  Back at his appointment at the big hospital in the city, he only had 7 and one name.  So he tripled his "words" in roughly 8 weeks!!!! (I put "words" in quotes because they are approximations and you have to know him very well to understand what he's trying to say - tripling his "words" doesn't mean he is "fixed" - it just means he has been working very hard to make some of the sounds or parts of words.)

Something I was not expecting - this morning we got into the car and the first thing he did was point to the house and say, "Bee-bee?"  He must have been wondering where his big sister was and why she wasn't going to school with him.  They were in separate areas last year and saw each other periodically throughout the day, but he's really attached to her.  It will be interesting to see how he does as the year carries on.

Drop off was a little hairy - all the teachers coming in to drop their kids off the first day and drop off all of their kids things - diapers, wipes, meds, ketchup (Little Man's favorite food group), bed rolls, extra clothes - it makes for a little confusing drop off.  Thankfully tomorrow it will just be the lunch box. :)  He went right over and played with the cars and saw his friends.  His friend A came right over and said, "How r ya?"  Just melted my heart a little to see him reach out to Little Man.  I slowly made my way to the door and he looked back and he cried a little.  Thankfully his teacher swooped him up and I made my way out the door.  By the time I drove out of the parking lot, he was back playing with his friends.

According to his teachers he had a great day!  He decorated his folder, played with his friends, he hung close by the teachers when they were outside - but he still had fun, he ate and napped and had a huge hug for me when I picked him up.  He must be still excited from his day, as he has been in bed since 7:30pm and now at 9:30pm he is still in his room wide awake...

Here are a few pictures of his day today:

Not sure of this...

Putting Stickers on the Folder

This isn't so bad...

Playing cars with A :)

Let's hope Bee-bee's 1st day of Kindergarten goes just as well! :)

The Last Weeks of Summer

We've been busy with summer winding down...I figured I'd post some pics of what we've been up to...







Wednesday, August 24, 2011

The Last IFSP and School Referral

This week is a busy week for Little Man - he met his new SLP on Saturday and Monday and really warmed up to her quickly, which is very unlike him - but I'll take it! :)  Hubby and I made the decision that we really wanted an outside person to work with him and be a constant this year as we transition from Early Intervention to the Public Schools.  Thankfully, our insurance covers unlimited speech visits with his diagnosis, however we still have to pay copays and a $10 convenience fee for Saturday visits.

Yesterday, EI came out to do their last 6 month evaluation and he showed progress in every area!  His cognitive skills continue to be his absolute strength, remaining 6 months ahead of his age. :)  The majority of his scores were at or above his age level, with the exception of Expressive Language (18 months - up from 14!) and Self Care (28 months - because he's not potty trained...um, have you seen a 2 1/2 year old boy with speech issues potty trained by now?  Yeah, I didn't think so).  This still qualifies him for EI services until his 3rd birthday.  I was pretty surprised to see that CAS and SPD are not automatic qualifying factors for EI, but thankful (?) that his low expressive language score still qualifies him.

Today we met with EI again and wrote his last IFSP (Individual Family Service Plan) and made the referral to the Public Schools for Special Education.  SCARY! 

Here are the goals we wrote for EI (or close to what we wrote):
  • He will increase his vocabulary and begin to put two word utterances together.
  • He will increase his means for communicating his needs and wants using either spoken language, signs, or communication devices - including using appropriate eye contact.
  • He will continue to make progress socially by developing strategies for communicating with his peers and people he is not familiar with.
  • He will develop strategies/sensory diet to help engage him in activities, communication and interactions with others.
  • He will begin to take age appropriate risks in new and old activities through accommodations, sensory diet, and coaching.
The school referral wasn't so scary per say, but being a teacher, I know that there is the chance that he will not qualify for services, unless there is proof that he can not make effective progress academically due to his diagnosis.  We have tentatively set up a meeting on October 11th and invited the public school representative to come to our home and meeting Little Man and discuss our concerns, questions, and his issues.

It is going to be a long 6 months of meetings, evaluations and mostly waiting to see if he will qualify for Special Education as well as what it will look like and how it will fit in with our lives.  This is when having both parents work full time can hurt how you squeeze in everything.  Already, trying to juggle 5 therapies a week and work isn't easy - add in Bee-bee's school and activities and my google calendar may go into overload.

Tomorrow I will meet with Little Man's school director, teachers and EI to discuss different ways they can help him be successful in the classroom.  I am hopeful that they will be accommodating and helpful as we try to understand his diagnosis and how to help him be more successful in communicating.

Friday, August 19, 2011

T.G.I.Friday!

Long, long week...Thankfully, it's ended on a positive note, but it's been a long one!

We spent last weekend launching Operation Room Switch - Beebee (Little Man's name for his big sister) is being moved into the office, Little Man is moving into Beebee's old room, and the office is being moved into the nursery off of our bedroom (along with becoming a closet).  It is time, however we have accumulated waaaaay too much crap - way too much.  We are blessed to have so many people who love and adore our children, who love to buy them stuff or give them stuff.  Hubby has made many trips to the Salvation Army drop off and we still could get a dumpster.  The downfall of having a small cape for a house, is that we don't have much of a staging area to hold the contents of the room while it's being cleaned and painted.  Thankfully, I have a very patient father who has helped us out with the painting process and a very patient husband to help me with moving stuff.  Oh, have I mentioned that I also went back to work this week to unpack into a brand new classroom?  Yes, Operation Room Switch should have happened earlier in the summer...poor planning on my part.

Anyway, I chose orange and yellow for Little Man's room, while Beebee picked a lovely pink and purple for her walls:


We are slowly getting there and tonight BeeBee is spending her first night in her room (that still needs decorations and organizing):


Mean while, tonight is Little Man's last night in his cribby - tomorrow we will be moving him to his big boy bed in his new room.  I think he understands what we're doing, but since he can't verbalize it, it's hard to know exactly what he knows of his "new room" and "new bed."  I was thinking of making a sticker chart for him for staying in his bed and having him earn a small fish tank in his room.  I don't know how much he can understand about that, but I'm curious if it will work.

We had a good week over all - Beebee got to spend two nights with Nana-bee so Little Man had some uninterrupted therapy times and I could get some unpacking done of at work and organizing done at home.  He worked really hard in therapy this week and starts his outside therapy tomorrow.  Here are some additional highlights of the week:

Buddy-Dog got upset that Little Man fell asleep and couldn't play.

Little man with his Big Dog and broom - some of his favorite things.

Beebee at the "tavern" after Daddy's soccer game, explaining to one of Daddy's single teammates all about how to be a mommy to a Bitty Baby...I'm sure he was thrilled.

My old school being torn down...it's a little sad, but I'm super excited for my new room and my new teaching team! :)

And my loves tonight...I've been feeling cruddy and I ended up canceling going out tonight to stay home and rest...these three made me smile tons though. :)


We have a busy week coming up - new therapist for Little Man, more unpacking and setting up at work, Little Man's 6 month Early Intervention evaluation, IFSP meeting, daycare meeting for Little Man, and continuing to set up the new bedrooms.  Happy last week of Summer Vacation! :)


Friday, August 12, 2011

"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.

How Many Words?

The other day, our SLP was trying to come up with how many words/approximations Little Man has...so far we have:

1. /da-da/
2. /ma-ma/
3. /bee-bee/ Big Sister
4. /nah-nah/ Nana
5. /pa-pa/ Papa
6. /paw/ Paul
7. /gu/ go
8. /no/
9. /tee/ or /tee-tee/ TV
10. /ugh/ up
11. /peez/ please *with asl sign
12. /pee/  pee
13. /h/ help
14. /ruck/ truck
15. /lala/ or /wawa/ water
16. /mu/ more *with asl sign
17. /mu/ milk *with asl sign
18. /pu/ pull
19. /bu-bye/ *with asl sign
20. /eye/ ipad/itouch *with his own sign
21. /me/ me/mine/give me *with asl sign

So I think we're at 21, however names aren't suppose to count - so we have 15.  At the beginning of the summer we had 7 (without names).  So Little Man has almost doubled his vocabulary in  8 weeks - which is fantastic!  The not so great news is that by the age of two, most children should have at least 50 words (no names) and put two words together (we don't have that yet, even when prompted).  Lots of work ahead of us!

Fantastic Friday...yeah, right!

So things are just going wonderfully...if you think this, then keep on drinking.

This week hasn't been so "Fantastic"...granted, we're all safe, healthy, and somewhat sane...but little things have added up to be more of a "Frustrating" Friday.


My anxiety is creeping up...going back to work always stirs things up...moving into a brand new building, changing grade levels, and not being able to go in early to set up my classroom will definitely set it off.  Thankfully from my trusty sidekick of sleeping pills, I've been able to get three nights of awesome sleep.  I hope that the construction on the new building will finish soon so I can get in and set up.

Big girl is doing well - she had a good week, however she will tell you that we didn't do anything fun.  She is suffering from typical 5 1/2 year old ready to go back to school syndrome. ;)  This is from the same girl, who on Sunday, swung on a trapeze.  Yup, hubby's idea and she loved it.  Something tells me that she may request trapeze lessons instead of dance lessons this fall.

Not a great picture, but yes, that is Big Girl swinging on the Trapeze!

Little Man is doing ok - this week's therapy sessions were sort of duds.  We are realizing that 8am sessions aren't good for him and our other session was a meeting of his SLP, Developmental Specialist and an OT to figure out an action plan to help him.  There were some ideas tossed around, many of which we are already doing at home.  Something I'm not too excited about is the change over from his Developmental Specialist being his contact person to the SLP.  I had to open my mouth and assert myself more by telling the SLP that she needs to push him more - he is way more capable of producing sounds with the Dev. Spec. than he is the SLP.  I feel bad telling someone how to do their job, but as a teacher, I know this - if you don't set a level of expectations, the student will not rise to the occasion.  If the bar is set low, you will get low; set the bar high, and you will be amazed.

I spent 3 hours of my "free" time this week on the phone trying to get outside speech services for little man.  No one has after school times, and if you want them, then you're on a waiting list that is 6 months long.  No thank you.  We finally were able to get him in with a clinical fellow who is working under a SLP who specializes in Apraxia - not exactly what I wanted for him, but since he will be followed by the specialist as well, it was the best option.  The good thing is that they have Saturday appointments, so I won't be rushing around another night after work for therapy.

Other than that, we did have a good day at the beach the other day - Little Man even got into the water and enjoyed the waves.  Yesterday we visited my mom up at her beach house and we swam in the pool, went for a hike and played at the rock playground. 
Big Girl relaxing after swimming in the pool.
Rock Playground
Nana-Bee playing in the Rock Playground
This morning was tough - an hour and a half of non-stop crying, whining, whimpering or hysteria from Little Man - simply because we couldn't understand what he wanted.  Hubby gave him his iced tea (decaff) in a sippy and it became a nightmare - sippy was throw into the sink, new sippy came out and then was thrown.  Hubby held LM up to each cabinet to see what it was that he wanted, then he settled on eating Starbursts for breakfast.  I took the bag away and gave him 3 - then those were thrown.  Curious George came on, cries for it to go off ensued, hugs were demanded, then I was pushed away.  Cries for Daddy as he went off to work, hugs demanded again.  I put Curious George on again and despite cries for it to be turned off (by both kids), it has stayed on and entertained LM (who is now watching and eating trail mix the chocolate bits out of the trail mix for breakfast).  Thank goodness, we have some sanity for a little while. ;)