September 19th, 2009 | 
Author: There are days sometimes weeks where I get pretty down when it comes to Daniel’s progress. They are the times when we have struggled and he seems like he is never going to talk normal, go potty on the toilet, eat different kinds of food, or write with a pen, EVER! During those times when I am feeling that I have to find ways to remind myself that what I am feeling is not true.
Today is one of those days.
The last two weeks have been pretty rough because the kids have been sick and we have started this new school schedule. We are all trying to get on track and get with the groove. When Daniel doesn’t participate I get so frustrated and hard on myself. I begin to think I haven’t done enough. I am not helping him enough. I feel like a failure.
The truth gets clouded with my own sensory issues and AS stuff.
It seems that I go through cycles in my mind where everything is great and I can see all of the progress in Daniel. Then I get hit with “OMG he is never going to get there!” Which is not true at at all. When I sit down and rationally look at it he has not regressed in over a year. He has been progressing in every area. Other people can see it but I don’t. At this very moment he is playing with Joshua. He is talking to him, he is telling him about jumping as they jump on the bed. (the mattress is on the floor no box spring) He has been with us all day, he hasn’t secluded himself with the computer once or gone into a different room.
He has been talking to me and playing with us all day.
Why do I feel like I am failing him? Why do I get so down and have panic attacks about his progress? I have so many other questions and fears fill my mind but I am choosing not to listen to them. Instead I am going to fix my mind on what is really happening here. Any progress is HUGE! As I think of that I am reminded of Daniel uttering the words I once thought would never escape his lips. “I love you”.
I didn’t have to say it first, I didn’t have to do anything.
One afternoon Daniel looked at me straight in the eyes and said “I love you”. I am reminded of this because he said it again this afternoon. Not only did he say that but he was letting me kiss his face and then he in turn kissed mine. He kept kissing my cheeks and then gave me a kiss on the lips. Two years ago Daniel wouldn’t let us hug him, let alone kiss him. He barely even acknowledged any of us. He would spend hours all by himself in his room and not want anything to do with us.
So when I feel this way again I need to read this so I am reminded of the time I once thought he would never, because I need to remember HE WILL.
A True Gift
A joyful day I must express,
The words professed from my sons own lips.
My heart skipped a beat and to my surprise,
My son who often doesn’t speak looked in my eyes;
Then he professed the words to me
The words I didn’t know if he knew, you see.
The words “I love you” were spoken to me
From my boy who is finally getting free.
It Can Get Better
Calling his name over and over again,
Looking at me blankly…
My God is he there?
Talking and talking still no response.
Crying and praying make this all stop!
Does he know me?
Will he be a part of our world?
Kicking and screaming once again,
He can’t tell me what he needs.
Endless tears, it feels like eternity.
Is this the life for him and me?
People don’t know some don’t care,
As I watch my son feeling despair.
Days I have cried and shouted out loud,
Help my boy make him alright!
Stop his pain just let him be able to play.
Let him have friends and be ok!
But the light shown through and I saw a glimpse.
Never give up, no not a chance.
I know he hears, feels, and sees.
He is a child just like any other who is free.
Free from the burdens of a different mind,
But I wouldn’t change him; not on your life!
My little boy is coming out,
Speaking his words and playing about.
Laughter fills his mouth and a smile is there.
My little boy trying new things.
We are moving on, we won’t be the same.
He has shown me what true love really is.
It breaks my heart and fills me with joy.
I jump up and down because he tried new food!
I get a huge smile when he speaks to me,
some of these things I thought would never be.
Tears fill my eyes because I am so happy.
Daniel is who he is supposed to be.
Everyday is better,
Every moment I cherish.
What a God send he has been for me.
Posted in
angel! you are doing such a good job–of course he will learn to do all those things! It is just hard waiting for it to happen. Juliet still won’t use the potty and it frustrates me to no end, but I know she’ll get it one day.
For some reason, your blog is letting me comment today! did you change something? anyways, I’m happy I can finally chime in!
Thanks for the encouragement! I just get hit really hard sometimes, I think it is because I am so consumed in it that it is hard for me to see what others see. I try not to let myself stay in that mindset too long. Sometimes I wallow in it though.
Yes, we changed it so now you can leave comments. The only thing is I get a billion spam and can’t stand that! Oh, well what are you going to do can’t get away from the SPAM.