The Day Would Come

It's been a long journey with Ben already at only 3½ years old. It's been a hard road for him and a difficult journey for our entire family at times. Then we get these gifts. These incredible moments of pure unadulterated joy and bliss. Moments when the entire family celebrates and screams with peels of laughter and happiness for Ben... because he is so incredible and amazing and he awes us all with his determination, strength, and perseverance.

I have long wondered if Ben would ever really speak "properly." If he would ever communicate well and effectively and speak in sentences. He has been putting two words together for a few months now, and every once in a blue moon he'll put three words together and shine us that million dollar smile to show us he knows that he did something special and how proud of himself he is. Still, I wondered if they day would ever come if he would talk in sentences.

The day would come.

Today, just this morning, Ben spoke his very first complete sentence. He said five words. FIVE. All together. Nobody prompting him or asking him to repeat -- not that he's ever put five words together under those circumstances either mind you -- but he just DID it.

This morning he happened upon a package of candy canes that Daddy bought to decorate the Christmas tree with. Ben, with his magical 6th sense when it comes to all things candy, immediately brought them to me and started saying "eat. eat. eat. eat candy" (and doing the sign for candy at the same time). I told him no, that it was time for breakfast and there would be NO candy for him at this time of the day. So off he went to have some breakfast and get on with the day. In the meantime I hid the candy canes figuring that this year decorating with candy might not be the best idea with both Ben and Kit in the house -- our little candy mongers. After he finished he came up into the family room and started looking around. I watched him because it was obviously he was looking for something specific and I was wondering what it was. After a few minutes Ben held up his little hands in the classic 'I don't know' position (hands by his head palms up) and said "Where da candy canes go?" -- as clear as a bell. I was so completely stunned by what I had just heard that I just looked at him in stunned amazement and muttered "what did you just say?" and Ben repeated himself "Where da candy canes go?" At that point I screamed to Ed in the kitchen "DID YOU HEAR WHAT HE JUST SAID!!!???" and the wild rumpus began. We all sang and danced around Ben in a circle with Ben in the middle clapping his hands and beaming that million dollar smile of his and looking so proud that I thought not only would my heart burst from my chest with pride but his would too. We all laughed together in that blissful joy I spoke of earlier and just relished the moment. The moment of Ben's huge accomplishment and major step forward in life.

This is huge. I mean just enormously, gigantically, colossally, tremendously HUGE. The day came and it was amazing. I know how much harder Ben has to work and has to push himself and strive for the every day things that other people take so much for granted and think of as such simple little things. I know that it takes a herculean effort on his part, and he's only 3 years old... and he never gives up... he never stops trying... he never gives in... he perseveres and gives it everything he's got and he DOES IT... he does it all... in Ben time... beautiful, magical, wonderful, amazing Ben time.

He's My Son - by Mark Shultz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

Can You hear me?
Can You see him?
Please don't leave him
He's my son
~~~~~~~~~~~~~~~~~~~~~~

He's my son. I play this song all the time. I mean ALL the time. I've played it so often I worry I'm going to wear it out. All these many times I still cry every time.

Do you hear me? Do you see him? Please make him feel alright. He's my son. He's my world. Make the world an okay place for him. Please?

Benjamin, day 1

PTC update! Sorry so late.

I meant to update the very day of Ben's PT Conference. I mean to update the next day, but life with it's frenetic pace usually has a way of slipping through our fingers... as is OH so common here. I know I'm saying this sort of thing all the time, but life with 6 kids is so often comletely outof hand! LOL!

So the amazing, wonderful, incredible, joyful, completely awesome news... Ben's PT Conference went so great it was unreal. I walked out bouncing and skipping, feeling like God was smiling down at me and shining joy straight into my brain. Seriously. Just wow. Actually I was so completely high after his conference that as we rushed across town to go to Tessa's PT Conf. at a school that both Emi and Gregory have been through already I missed the turn! Ed, sitting beside me with a huge grin on his face, chuckled quietly and said "Hard to read the street signs from up there on cloud 9 huh?" Oh he was so right.

Basically I'll try to give you the gist of it a full month late. Ben's teachers all simply adore him. They say he is the sweetest and most loving little boy they've ever met in all their years (and most of them have been teaching SN kids for 20+ years). They said that he's actually TALKING in class more and more often and his volume is starting to go up to a regular level instead of whispering everything. They said he's playing with more toys and venturing out on his own more and just in general seems to be feeling much more secure, enough so that he's venturing out of his comfort zone and doing more. It's a great sign that he's more comfortable and at ease and feeling safe enough to do new things and try new things. It's huge. He's working on his coloring and getting better at using scissors. He can drink out of a "big boy cup" better than a lot of the kids in his class, even some of the typical ones. He's just doing wonderfully.

His PT, OT, and ST that all came to Ben's conference were awesome too. It was great to sit down with ALL of them and talk and touch base. They are all thrilled with Ben's progress. We talked about the fact that he can jump all by himself now and what a huge thing that has been for him and how proud of himself he is. We talked about the games they play with him and the activities they do and how it's all helping him.

His ST does this game with him when she picks him up at his class as they walk to the ST room Ben will yell "STOP" or "GO" as they go getting louder and louder (because they've been trying very hard to get him to talk more loudly in school so the teachers can understand him) and she said he's doing great with that and that now by the time they get to the ST room he's YELLING stop and go as loud as he can and that's actually a good thing.

His PT and his OT both said he still has a great deal of trouble with fine motor skills, but that's neither surprising nor upsetting because we know this about Ben (heck Gregory's fine motor skills were crap for years and he's perfectly typical. LOL!). He's doing great with their activities though and he's loving it. Every Friday in school they have an obstacle course that the PT does with the entire class, even the typicals, and she has found that if she introduces Ben to it early in the week and lets him get some practice in he can actually be the one to show the other kids in his class how it's done and do it first so they can watch HIM do it. I mean..... WOW!! I have to admit I got tears in my eyes over that one. His OT also lets him do the course once or twice during their visits during the week and that's just helping his confidence and self assurance. It's ALL good.

The one thing that blew my mind was that near the end I mentioned how I know that Ben is well behind his peers developmentally but that we're all so proud of him and think he's doing great and know that it's becuase of his teachers and therapists hard work and dedication. Then Ben's main teacher said "He's doing great. He just does things in Ben Time" and that got me too because that is a phrase I use myself ALL the time. Ben doesn't do things when typical kids do them, he does them in Ben time and that's just perfect for Ben, so to hear someone else say the same exact thing was just... gosh... I don't even know the word to use... validating.

So all in all Ben is in a great place with some of the most loving and giving women I have ever met in my life. I don't know that I can ever thank any of them enough. Ben is coming out of his shell and learning that while maybe he doesn't talk as well as the other kids it's OKAY for him to talk in the way he does and that's just fine and people will listen and they WANT to hear what he has to say. He's learning that he can do more than he thought and that he is an amazing little boy. I just couldn't be happier with where he is and how he's doing. Ben may not ever be like the other kids, like everyone else.... but who needs to be like everyone else right? He's better than that, he's extraordinary.