Tuesday, April 17, 2012

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.

Monday, April 9, 2012

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.