Wednesday, May 13, 2009

I'm so pushy



Welcome back to our week of medical hell. On Monday, Max had a seizure. Yesterday, he got an ear infection. Sabrina has strep throat. Dave has bronchitis. Three out of four of us are on antibiotics. Surely I will come down with leprosy or something before we leave for the Disney cruise on Friday.

Dave took Max to the doctor last night at 6:45, when I wasn't yet home from work. I called him at 7:30, and they were still sitting there, waiting for the doctor to see them. Max was practically falling asleep because of the increased dosage of anti-seizure medication. It's going to take a few days for his body to adjust.

"You should tell the nurse what's going on—Max has to get home and get to bed," I told Dave.

"OK, OK," he said.

I knew he wasn't going to say anything. So I hung up, then called the reception desk. I explained the situation to the nurse—that Max had a seizure the other night triggered partly by sleep deprivation and that this was a child who really, really needed his sleep. She got him in to see the doctor immediately.

When it comes to Max, I don't just have balls; I have balls of steel. Balls of kryptonite. Balls of, well, you name it. I will do anything humanly possible to make life better/easier/happier/more comfortable for him. I've never been much of a wimp, but with Max, I am unstoppable.

Sometimes, as was the case last night, I am calm and reasonable.

Sometimes, I plead and beg and won't shut up, as I once did when I wanted to get Max in to see an overbooked developmental pediatrician. It worked.

Sometimes, I am a total hard-ass, as was the case a couple of years ago when the top speech therapist at Max's old school said he "wasn't ready" for a communication device. I'd been feeling all along that the school wasn't as proactive or as progressive as I wanted; this was the last straw. "Well," I told her, "have you even tried one on him?" No, she said. The school did not have any. "Then how could you possibly know he is not ready for one? Don't you think, since he loves computers, he'd be so into using one? Don't you think he's bright enough to try one? Do you realize that the Cerebral Palsy association has a lending library of communication devices? Don't you think Max deserves to at least try one?" And on and on I went. Finally, she agreed he should be assessed for one. Guess what? He was ready.

Back when Max was in the NICU after he was born, and I demanded that the occupational and physical therapists stop by to check him out, the social worker there looked at me and said, "I can tell, you are going to be a really good cheerleader for your son."

How could I not be? Max needs every bit of help he can get. And so...

I am his cheerleader.

I am his coach.

I am his supporter.

I am his helper.

I am his defender.

I am his bulldozer, paving the way for his future.


Photo by Batram.

23 comments:

  1. Ellen, keep on being pushy for your sweet boy!

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  2. YES.

    Yes, yes, yes, yes, YES!!

    Ya gotta do what ya gotta do. And good thing, too! The babies deserve no less!

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  3. When it comes to Max, I don't just have balls; I have balls of steel. Balls of kryptonite. Balls of, well... I'm laughing so hard my manly balls hurt... You da' man Ellen.. But, damn, I thought you was a lady? LOL hehehe

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  4. Woohoo!!

    Great post Ellen.

    I am another in your league.

    I like to call myself a 'passionate advocate' rather than a pushy mama (although I know it's really the same thing) ;-).

    I hope you're all well before the hol on Fri. Sounds like it's muchly needed by all!!

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  5. I often wonder what happens to the kids whose mothers aren't pushing and screaming their heads off when necessary.

    I'm pushy too - and I have found that my kids seldom get what they need if I'm not.

    Hope your household is well again SOON.

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  6. You are doing your job as his mom. You have to push the world to make a place for your son because no one else will. You go girl!

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  7. Oh my I've been thinking about this lately. I know what happens to at least some of the kids who's parents don't advocate. We are at the point where I am seeing it. They stop getting services in school that they still need. They don't go to school regularly in high school because their parents don't care any more. The parents stop meeting the teachers or attending the meetings and one of them just came up to me two days ago to tell me how surprised they were when he turned 18 and they NEVER knew about the guardianship issues. This a parent I always tried to get to come to parent meetings or seminars on these very issues. Honestly, we held meetings at different times, emailed information and handed out handouts. Many parents don't educate themselves. I guess maybe its easier for some to stay in denial, perhaps they are scared? But you have to advocate all the way and I am far enough along to see kids with involved parents do better.

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  8. P.S.
    Most important, Ellen, you sound like a wonderful mother!! I hope you and your family have a very relaxing fun vacation!!

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  9. It is so important to fight for your kids. I have done this so many times, and I know Regan would not be as far advanced as she is if i didn't push her constantly. I hope everything is back on track for your vacation.....it is well earned for everyone.

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  10. Sometimes you just have to take the velvet off the hammer and pound a few stubborn nails!

    Hope you all are feeling better in time for Disney!!

    xo

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  11. Ellen we have to be pushy for little guys otherwise no one will help. I am sorry everyone is sick it must be going around we are sick here too. Sean also had a seizure last week!

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  12. Max is blessed to have a mom like you fighting for him every step of the way. Way to go!

    I am not the most assertive person in the world, but I am learning to be when it comes to getting what my daughter needs. No one is going to just hand them what they need!

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  13. Good for you...as a mother you have to be that way. Especially with Max since he can't stand up for himself. Keep doing the same you are a wonderful mom!!!

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    1. Anon NEVER underestimate the abilities of a kid with disabilities ever!! Max WILL someday be able to defend himself. I havent been pushing Amelia because I am too afraid she will snap back and tell me to lower my expectations.

      And to the above poster, isnt Emily a girl's name??

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  14. Do what you have to do to get things done is what I say!!!! I'm the same way with Clayton and I really don't care what anyone says about me once they're finished dealing with me!!

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  15. It's good to be the pushy one in a relationship! You get more ice cream that way!

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  16. I know these roles all too well --- have posted, myself, on being a mama tiger. You sound like a tiger yourself -- and I hope with all my heart that Max feels better and stops having seizures.

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  17. GOOD for you! Illness brings on seizures in Jude.

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  18. Yay for Ellen! My husband is definitely scarier than i am. He puts on his military voice and says things like, "that is completely unacceptable," which sounds very scary when he says it.

    Anyway, you know, ear infection might be what triggered the seizure. I think that's a pretty common domino effect.

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  19. Good for you. AND Max!

    You need to be pushy. For some reason it's as if people to listen to "us" unless we make them hear. Well.. they need to hear!

    Keep pushing.

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  20. you are the best mom. it's so inspiring.

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  21. Oh, this is so beautiful, it makes me cry.

    I hope I am that way to my boy.

    I secretly fear I haven't.

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Thanks for sharing!