Friday, November 7, 2008

Don't Underestimate

sister Brittany and Daniel
October 2008

Since Daniel is the busiest 3 year old boy I know, not necessarily because he wants to be but because that is just how it is. Unfortunate as it is, Daniel needs these extra hours of "playtime" (therapy) because of his conditions. Just takes him a tad bit longer (actually it takes me longer to figure out an adaptive way to do it.)

From Day One, we were told that the future is unknown with Daniel. Basically, because of his diagnoses, not to expect too much from him.
"You will just need to learn to deal with his ongoing issues, and realize this might not have been what you were expecting..." DUH? Really??

Well from Day One...people started putting limits on Daniel.
They see he has Cerebral Palsy; "Oh well don't expect that he is going to walk".
They see that he had Infantile Spasms (epilepsy - horrible kind), "Well crap....mental retardation goes along with that."
They see brain malformation and that's the kicked "HOLY CRAP, that ones a douzy, yeah you guys have some issues to deal with there. I'm sorry"
WTF? He is still a living breathing little boy. He is still MY baby. Do NOT LIMIT HIM, because he will just make you eat your words. It may not be tomorrow or the next, it may be years away, but he will do it. And when it happens I will take the reports you gave me saying he wouldn't and I will attach a photo or video of him doing it, and tell you where to shove it :)

Well from Day Two and on, its been a fight, its been difficult. I'm not going to tell you its not all sunshine and happiness, because its not. I'd like to say that Daniel is like every other 3 year old boy out there, but he's not. And for that I am grateful. Seriously. Wouldn't change Daniel if I had a chance, because then he wouldn't be the Daniel I know. Now, if he overcomes certain obstacles on his own, then I welcome it. I will celebrate with him and let everyone I know hear me scream it from the roof tops. As any parent should of their child's accomplishments whether they are typical children or children that are differently-abled.

I am not living with rose colored glasses on....there will be things that he can't do. But don't ask me what they are, because I don't know. He might not be meeting milestones right now, but so what...he's doing it on Daniel time. He is doing what his body is allowing him to do now, the body he fights against each day. Now for his brain....yes you're right there is a brain malformation, big deal....he is probably smarter than the average bear! People just automatically limit him because of a label that a doctor applied to him, when he was just a little boy. And that label is stuck with him for the rest of his life. SUCKS but there isn't really much I can do about that but to help Daniel prove then wrong.

These are things we are working on and will be posting in the future:

  • learning to read
  • learning to count
  • potty training
  • sign language
  • ECO - Augmentative device (computer)
  • counting, sorting, shapes and colors
  • sitting up unsupported
  • ABR therapy

I am sure there are some of you out there saying I am setting him up for failure. That I will make him feel bad because he WON'T be able to do that. But I will say this in my defense, when you started to teach your "typical" child any of the things listed above, did you stop and say "Ooooh I better not do that, I might be setting him up for failure?" NO! You continued because that is the natural next step correct? Daniel is just like anyone else, he can learn, he is smart, and he understands.....just like your child. And I am not going to treat him any differently than I treated my other children when it comes to the different things - just because someone has labeled him. How do I know he can't do it? Should I assume? (ass - u - me) No, because I have no clue what Daniel has planned out in his head. We might go about it differently than your child does...but in the end, the result will be the same. So does it really matter how he got there? Whether he got to the finish line on his own two feet, or if he got here in a wheelchair?
He still worked at being the best he could be, and got there in the end. It may have taken him longer, but sometimes the victory is so much sweeter if you take your time getting there! ;)


Justinich Family said...

Very well said. You have inspired me to do the same for Evan. How did the EEG go?

alejandra said...

Melanie: I loved your post. I feel exactly the same about my son, Salvador. We know how brave our boys can be, much more than many "normal" boys we know. We are starting ABR in January, 2009, in Buenos Aires.
Congratulations for you and him.

Bird said...

I totally agree and is it just me or is Daniel's neck looking a little longer?

BabyPaxson said...

I feel the same way.

And I think your goals are right on target! we're planning the same for Paxson