Thursday, September 17, 2009

Extreme Honesty

Another CI Momma told me about this little guy Max's blog. As I do with any blog I'm "referred to", I settled into my comfy couch, clicked on the link, and read from the beginning to current. Many tears flowed as I read Max's blog. You see, Max has cerebral palsy, just like AJ. His blog was the first "CP" blog I read.

Max's Mom wrote an awesome post on her blog about how having a special needs child affects a marriage. And was extremely honest about it. What a refreshing post. I think sometimes we all fear honesty. I am a firm believer that raising a special needs child is not like raising a normal child. How's that for honest. The comments for this post were interesting as well.

With permission, I am posting a link to Max's blog. Please click here to read this fantastic post. Below, I've written some of the things Jeremy and I go back and forth about during any given week (you'll understand once you read the post):

...I know we don't like the theratubing around his leg idea, but its only temporary until he gets his AFOs.
...I know he does well with the spoon and its less of a mess when we feed him, but he needs to practice eating with a fork and eat on his own more.
...Did you see the new list of activities to help him communicate? I know, it worries me too.
...Did you pick up the photos for his experience books? I have to get those up and running ASAP.
...Uh-Oh why is AJ taking two steps and falling? Uh-oh, his muscles are tight again. Is he growing? Does this mean he needs botox? Will he continue to be tight?
...We have to get more Pediasure/Kid Essentials. I think I have more coupons, lets pray its on sale. Did we hear if insurance is going to cover it yet? Remind me to call.
...Sigh. He's freakin' hungry and he's mad. Where is our food? Why didn't I bring the fruit loops to tied him over?! If you get up with him he won't settle back down at the table.
...The insurance company is saying continued OT and PT is maintenance...yes, I already talked to his therapists about it. We need to draft a letter and fight this.
...We both need to stop carrying him so much and take time out of each day to help him work on self-care skills.
...When is the right time to potty train AJ? We said we'd wait till he started school and adjusted. Yep, we'll have to talk to her about it sooner than later.
...It is not good for AJ to close himself in his room and self-stim. It is not good for AJ to walk around with a metal bowl and not play with other toys. Let's find something else for him to do.
...How did AJ do in school today? We need to discuss X,Y, and Z.

1 comment:

  1. Oh how I know exactly how you feel on this one. And how Ellen feels. I also look at photos of us before kids and feel like I am 100 years older now instead of just six. :)


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