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Im a mother. A mother to two beautiful twin boys. My boys are my world. Unfortunately one of them is very sick. Battling with seizures, Neurofibromatosis 1 (NF1) and many other issues including Autism. But his drive to learn, his drive to assert his presence is what pushes me to find a cure. A cure for the incureable. Here I am, Playing God. Playing God to him, to my Tuti, to his brother, and most of all to our family. Im just a mother, a mother who is playing God to my Tuti. My Tuti Fruiti

Friday, February 8, 2013

The Prized Greasy Oil

A few weeks ago I get a call from Tuti's therapy place letting me know that a new physical therapist will see him during one of his sessions. As a mother of a special needs child the words "new therapist" does not exist in your dictionary. Infact you have deleted it completely from your brain cells. You become extremely possessive about your child's therapists. And I mean extremely possessive. If one of them leaves its like I'm mourning their death. Im mourning everything they have achieved with my child. I end up crying and thinking that I'm doomed. Tuti is doomed. Those feelings tend to linger for a long long time until someone really great comes along and we start the cycle again.

But because the one that's been substituted was fairly new too, I didn't mind. Not this time. So I go pick him up after his session with this new PT. She comes running to me talking so fast that I can barely keep up. I doubt she used a single full stop or a coma in her sentences and All I could hear from her was sensory this, sensory that, sensory input, sensory output then out of the blue she grabs a hard ball and starts demonstrating on me. She shoved the ball so hard on my back I almost fell off the bench. Then she started pressing harder and harder all over my back on my arms on my neck all the while she was talking and talking. I wanted to scream, I GOT THE FRIGGIN point! Then she takes out a cheap baby lotion and as she was unscrewing the top I thought whoa whoa stop right there lady, keep your hands to yourself, but instead I said very calmly I don't do lotions. But I need to show you what I did to him, she said. No thank you I said I really have a strong aversion to lotions. She looked at me as if I'm a crazy woman. But I really do have an aversion to lotions on my body. Typing this now is making me realize how similar Tuti and I really are. Heck I think I definitely need some occupational therapy myself.

She went on and on about the sensory issues then she ended her sentence with, watch how he is going to sleep like a baby tonight. I look around and see Tuti racing up and down the gym, going up and down the slide, and running from wall to wall non stop with him squealing. OH MY DEAR GOD, what the hell did she do to my child???!!! Tuti has been over stimulated! And he has gone Loco. Sleep like a baby? Yeah sure! That night it took me two hours, two hours to make him fall asleep and not only that, but he woke up three hours later wanting to play while I sat there in bed cursing the S*** out of that woman! Now you see why the words new therapist doesn't go down well in my system?

Now on to something else. I've been learning alot about this public school system. Thanks to an amazing mom who I met through Tuti's school. We hit it off right away and she became my one and only confidant. She has gone through hell to switch her son schools, and even though many people told her its a lost battle, she did it. She did it on her own. And now she knows all the ins and outs to get her son the services he needs. I never ever thought that I needed to fight and I mean really fight to make people do things.

Tuti has been progressing but it's like he reached this standstill. I had no idea what they were teaching him in school. All I knew that after him being there four months, they still can't seem to find ways to feed him. A very very big issue. When I first learnt he was entering this school I was delirious with happiness. It's the best school everyone kept telling me. The best. I thought to myself eureka they're going to get Tuti to finally eat real food instead of the baby purees he is on. Heck they can't even feed him the purees let alone make him try new things. That's when I realized that the best doesn't always mean the best. And it's not just the feeding it's many many other things. They don't challenge him. And Tuti needs to be challenged. He thrives on challenges just like me.

My friend then taught me to push them. Push the teachers, ask questions, be pro active, go to workshops. And sure enough, I am becoming that mom. My friend also taught me a new expression. I love learning new expressions :) I have become that mom, that mom that squeaks because after all, "a squeaky wheel gets the oil". And I'm sure as hell I'm going to get that oil. The Prized Greasy Oil...

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