Two Quotes and Two Wonderful Kids

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

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

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

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

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

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

And I bet she will.

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

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

6 Weeks In

We are now 6 weeks in to Cha-cha's new school.   He seems to enjoy his new school and happily goes in with a smile and a wave to Hubby when he drops him off.  Cha-cha enjoys riding on the school bus to his at home daycare and enjoys his down time having lunch, occasionally napping and playing with some new friends of various ages.  Again, it's been more difficult for me then him, since I don't have that daily interaction of picking him up like I did when he was in full time daycare.  I always got a note from EI if they had been there and I either got a note or the chance to talk one on one with his teachers if there were any issues, or if he had just had a great day.

I'm struggling with the lack of communication between his school and home.  Because I'm not a stay at home mom, I don't have the luxury of picking him up at school every day and getting the thumbs up or the quick, "Just to let you know..."  I'm left with a piece of paper with some X's on it to tell me what he did that day with no writing.  It's up to a 3 year old boy to tell me what he did and how his day went.  Sometimes, I get the, "I go moto roo" (I go to the motor room) or "I pay pe-en pay" (I play pretend play).  But ask him who he played with or who went with him, we get the response of, "Nobody.  I pay by mysef."  The teacher sent home a list of names of the kids in the classroom and I still get, "Nobody."  Developmentally, he still does a lot of parallel play, but to hear that he didn't play with anyone or no one wants to play with him, breaks my heart.  According to his teacher, he is rarely alone and she was "surprised" to hear that he says that at home.

After a week of emailing his teacher and not hearing back, I was furious.  I even started a Facebook post about how long was appropriate to get back to a teacher (myself being a teacher too).  I got the typical range of 24-48 hours depending on absences and weekends, but a week is uncalled for.  In the teacher's defense, she said she didn't have any concerns, so she didn't see why it was important to get back to me so soon.  I explained to her for the second time in a month, that I need the feed back for my son and my sanity.  I need to know how he's doing and if he had a good day or not.  I need to know what he enjoyed and maybe what he didn't enjoy.  Throw in the teacher starting to potty train him (without communication), and I had a huge mix up of a little boy telling me that they took his diaper off and let him pee in his pants and her telling me (a day later) that he peed through his diaper and that was why they had to change him.  With no communication as important as a written "Changed clothes due to diaper leak," I was ready to pull him out of the school.  I'm hoping now with a second reminder that I need communication and a call to the Special Education Coordinator, I will hear from the teacher in a timely manner and I will get more feedback on his communication sheet.

I know I'm not a perfect teacher and I may have not gotten back to a parent in a super fast or timely manner in the past, but when you have a child who is limited in his communication skills and speech (and is THREE!!!!), you don't get much.  People tell me all the time that boys don't "report" much about school - but in order to build Cha-cha's communication skills, if I know what happened at school, I can encourage him to share with his sister, hubby and grandparents.  My goal at home is to increase his opportunities for communication so that he can practice his speech and language.  He's not one to want to sit down and do apraxia speech cards, but if I can get him to tell 5 different people how he hunted for Easter Eggs or how he got Batman Undies from the Easter Bunny, then I have increased the purpose of communicating and given him the chance to practice in real life.

Apparently, from my phone call with the teacher on Friday, he is doing well.  He likes school and follows the routine with no concerns.  He typically chooses pretend play and enjoys playing in the kitchen and taking care of the dolls.  He needs coaxing to participate in the art activities.  When asked to sit on the toilet, he will sit and pee pretty much all the time.  He is very compliant and goes with the flow.  The teacher and assistant understand him about 70% of the time, but his classmates is less than that.  Today when I spoke to the Special Ed chair, she said that she would be setting up a progress meeting for him after our Spring Break...and then went into how it can't be before or afterschool due to contractual hours...bursts my bubble b/c as a teacher, there are many days where I am there before or afterschool conversing with parents on the phone or in person.  I know I have never thrown the contract into a parent's face before as a reason why I can't converse with them.  I understand why we have a contract and it's purpose, but for the good of our children's future, sometimes we need to bend a little. 

So in all, he's doing "well", but I'm not 100% thrilled.  I probably will never be 100% thrilled, but I'd like to be closer to that.

Temporary Burn Out?

The last two private sessions for Cha-cha have been tough.  On Saturday, Hubby and the SLP noted that he was slow to warm up and it took time for him to get into his play/therapy mode with the SLP (who he has been seeing twice a week since August).  Today, he almost cried when it was time to go back to her room.  Both Bee-bee and I followed him back, as he doesn't like to be separated from us, and after about 5 minutes, he sat in my lap and pretty much refused to participate.  He would then go back and forth from playing to my lap.  After about 40 minutes, he laid across my lap and put his hands over his ears and refused to continue. 

I asked him what was wrong and he said, "No.  All done." 

I then asked him if he was upset and frustrated and he said, "Yes."  When I asked him why he was upset, he said, "No talk nobody." :(

It pains me.  I don't know what is completely going on in that little big head of his.  As he's getting older, he's noticing he is not like other kids.  I know that in my heart and his teachers have told me this.  Even at a young age, I've heard kids ask me, "Why doesn't he talk?" or "Why doesn't he talk right?"  Does bullying start at age 3?  I'm hoping that this small lapse in following through with therapy is related to him possibly being overtired, or the time change or adjusting to his new school.  We were warned that there would be setbacks in his progress with the transition, but I didn't think it would happen with him. 

Thankfully, he's willing to talk when he's happy or excited and he doesn't seem too upset over the sessions like I am.  Tonight, when he was going to bed, I had him giggling about going to school, taking the school bus to daycare and then our plans for when I pick him up.  Hopefully, the week will be a good one for him and he will have a better session on Saturday.

Differences and Similarities

It's amazing how different two siblings can be.  The both have DNA from the same parents and have been brought up pretty much the same way, but they are so different.  In our house, it's almost like they both got the complete opposite DNA minus the blue eyes and occasional tongue sticking out when they are thinking chromosomes.

Bee-bee is creative in her crafts - she can cut and create and glue and create all day long.  She loves to draw and color.  Cha-cha could care less - he is creative in his play.  He loves to make his "guys" help each other, pretend to cook food on his mini grill, or build with blocks.

Bee-bee is a talker - she came out of the womb being vocal and she has remained that way since then.  She even talks in her sleep.  Once while in the car with my MIL, Bee-bee stopped talking and she thought that Bee-bee had fallen asleep...no, insisted Bee-bee, she was just taking a break from talking.  Then you have Cha-cha, who is in the process of finding his voice and using it.  He does a good job, but he lets his actions speak for himself more.

Bee-bee is a kid who will jump right into something without even thinking about it.  We worry that someday this will end us up in the emergency room and we've had some near misses.  She is enthusiastic about new adventures and seeing what is next.  Cha-cha is comfortable in his own surroundings.  When there is something new to be seen, he stays on the outskirts observing, before getting comfortable joining in.  He's not one to take risks until he's done it a few times.

There are some similarities.  Both are tall and will probably be taller than me by 5th grade.  Both have a love for animals and others.  They are social beings and enjoy being around people, just Cha-cha prefers to be around people he knows more.  Both get overtired fast and will have short tempers if their quota of sleep has not been reached.  They hate water in their eyes during bath time.  Both enjoy playing on their own and creating their own play.  It's nice for me when they can occupy their own time.  It's amazing how they are siblings and how being who they are can make them so different from each other and at the same time, how similar they truly are. 

Happy Birthday and First Day Success!

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

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

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

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

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

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

Saying Good-bye to EI

Today was our last meeting with EI.  It was so sad to see them go.  Our Developmental Specialist has been with us since Cha-cha was 7 months old...she was there when he learned to crawl, sit up, and say his first sounds.  The SLP took over as lead when we had the diagnosis of Apraxia, even though we had been seeing her for a good 8 months beforehand.  And the OT started once we found out about his SPD.  These three women worked tirelessly up to 4-5 times a week combined, meeting with him, going to his school, meeting with his teacher, and us as a family.  They were my go to if I had a question, concern, or wanted to share an accomplishment.  We exchange texts over funny Cha-cha-isms, fun things like our current level of "Where's the Water?" or other cool apps and websites for children ourselves.  They've attended doctor's appointments, fielding questions when we became overwhelmed, adding in additional information when necessary, and collaborated with others to bring out the best for Cha-cha.  It's a bittersweet day - Cha-cha is old enough now for school aged services and has made so much progress under their services.  How I wish we lived in a state where services would continue to the next beginning school year or until age 5, but I know that he will continue to thrive and grow with other means of support.

Cha-cha said good bye pretty nonchalantly.  At one point he even hid in his room, but then was able to come out and hug and wave them off.  He enjoyed the balloon, card and cupcakes they brought to celebrate his birthday and his accomplishments.  I shed a few tears, as did they - but I wasn't expecting Bee-bee to take it so hard. 

She had uncontrollable sobs as they pulled away.  She understands that this is it - and unless we have some by chance passing, we may not see them again.  She gets it.  The Developmental Specialist has been here since she was 3 1/2.  Because of these wonderful women, our daughter uses words like prompt, utterance, plural, intonation, and consonant-vowel sounds.  Yes, I see a future Speech Pathologist on our hands.  Over the summer she said to me, "Mommy, I don't know if I should be studying my Kindergarten stuff or my Speech Pathologist stuff."  She has sat through almost every home visit and watched and then mimicked these women after they left.  It was because of Bee-bee, we got Cha-cha to say "Ma-ma" and "Bee-bee" through her prompting.  So many times our focus has been on Cha-cha and when you turn around, it's been Bee-bee's focus too.  It's hard to remember that she's just a 6 year old, but a 6 year old who understands what it's like to work hard, to reach limits, and still demand more.  With Cha-cha's diagnosis and therapies, she's seen someone younger than herself defy what doctors have suggested.  It's a lesson that can not be replicated in any classroom or told by any book.  I hope she always remembers this. :)

We made it through the last day...

I don't think I've cried this much in a long time.  Maybe the last time I did was when we found out that Cha-cha had Apraxia and SPD, however I think I took that easier than I did seeing him enter his new school and seeing exactly what he needs to have in order to be successful.  Seeing the structure and the prompts, seeing the visual pieces of the day, watching the routines - it's going to be a tough transition for him.  Thankfully, a lot of the things will be repetitive from his old school and he will be in good hands and he will be getting the support that he needs.

Hearing that your child has a disability or that he's not neurotypical is tough to swallow - but seeing what it's going to look like in an academic setting (especially when you're a teacher) is a whole different experience.  Yes, he's come so far, but he has a long way to go.  It's another grieving process.  We didn't make it to Italy; we made it to Holland and we're going to enjoy it and make the best out of it that we can.

We have a week until the next big day - however before that we need to say goodbye to EI.  Tuesday is going to be another toughie, but we'll get through it.  I'm planning on scheduling a massage for me this week, and tonight is date night with hubby - and there is a frozen Snickers in the freezer. ;)