Tuesday, November 18, 2008

No Room For the Weak or Meek...

I have discovered that the world of special needs is no place for someone who is weak, meek, quiet, passive or thin skinned.

It has taken me a few years to come to this full realization.
And I must admit, that I sometimes wonder if I can cut it in this world.

There are so many emotions that a parent/caregiver and the child goes through.
GUILT. UNDO PRESSURE. FALSE HOPE. UNREALISTIC EXPECTATIONS. JOY. EMOTIONAL ROLLER COASTER. FEAR. CLICKING OF THE CLOCK
When Daniel seems down, I am down. Vice Verse also. I have been down and dragging ALLOT lately, and I am FRICKIN' SICK of it. I wake up in the morning and lay there and say "OK today IS going to be a productive and good day." and when I go to bed at night I lay there and say "WTF? What did we do today? I didn't accomplish even a third of what was on the list to do."

I needed to realize that just because I didn't do EVERYTHING on the list of things to do with Daniel, that I was NOT a failure. That I am NOT letting Daniel down. I am simply human and I can only do so much. I get tired, I have medical issues, I get sick, I have other children and people in my life. I AM NOT SELFISH. I need time to just be a regular ol' mom. I don't always need to be in therapist, advocate, doctor,teacher, wonder mom mode. I need time to just chill, and Daniel needs time to be a typical 3 year old little boy. Every moment of everyday does NOT need to be crammed with some for of "treatment"/"training". I do not need to go to bed every night feeling like I failed my child.

When you are the parent of a SNK (special needs kid) you learn to stop caring about the scores on the tests, and not cry every time someone asks if your child has met the milestone for their age. Don't give a crap about what the other kids are doing, don't panic about the parent/teacher conference. Don't take it to heart when they say that he doesn't "compare" to other kids. Don't wear your heart on your sleeve.

Guess what people?? I don't want him to compare to the other 3 1/2 yr olds out there. Daniel is unique. He was unique from the day he was born. He was unique BEFORE he got all of the diagnosis that he has. And I wouldn't have him any other way. Daniel is a fighter, and damn it....his mom is going to be a fighter too. He may have to teach me some things along the way.
So far he has taught me to not be meek, don't be passive and let people walk all over you. He has taught me to love unconditionally. He has taught me patience (Lonnie stop rolling your eyes!)

He tells me with his eyes.... That he is truly happy. And that = happy mama


So I say:
Get Up and be proud, don't care what people say or do. If they are hurtful, smile at them (and smile because you know in your heart of hearts....that Karma will bite them in the ass one day!)
and smile because you know you truly have an amazing child. You teach your child on your terms, you do what you can for your child, and you love your child. You teach them right from wrong, and you teach them to treat others kindly and with respect no matter of their abilities, disabilities, race, or religion.

And with that being said, I am going to bed.........no I didn't get my whole list of things in with Daniel and I am NOT a failure to my child, and just because he might not measure up on someone else's scale, in the grand scheme of it, who the hell cares? When he's 35 yrs old, do you think anyone is going to say...."well he didn't walk unsupported until he was XX years old".

But I will tell you this...he held a glass today (with no handles) and took a drink!! AND today was the first day he held his own bottle and drank it by HIMSELF! YAW HOOOO!
and as soon as I can figure out how to get it off the cell phone and on here I will!

5 comments:

Katy said...

You know, I have a chart where I keep track of everything I want to do that day. I have NEVER gotten it all done. That's just how it is. Like Leonid says, we decide what's a priority and go on from there.

Daniel is a lucky boy to have such a strong, passionate momma.

Jacolyn said...

Thanks Mel. I needed that.

Anonymous said...

Yes.

C said...

Go, Melanie. Sniffing and tearing up in agreement...

laila said...

So true!!! WTG Daniel on the cup thats HUGE...I was on cloud 9 for a month when Hannah drank from a cup while I held it, LOL...EVERYTHING they do is huge! I think we forget how even though were not in therapy mode some typical everyday things are just as powerful and stimulating as therapy things, kwim? Hugs sweetie!!!!!