The story continues

February 2009

 

It's been a long time since we last wrote about Rosa . Almost 9 months passed since the last update.

It's not easy to resume what has happened.

Rosa has progressed in many different ways and in others she seems to be desperately trapped.

After 5 years of intensive routine (program) we have learned how to live with it. It is part of our lives. We have learned how to organize our lifestyle and it's not as hard to accomplish our daily tasks anymore.

 

 

 


 


The problem arises when we've set a goal and been working on it for years and we simply can't move forward. That's when Rosa looses all her motivation and it becomes really hard to get her motivated again.

For us there's no doubt that we have to keep fighting, knowing that our achievements can sometimes come later than we expected, just like one of Rosa's friends who after 7 years of therapy could finally stand up and walk by himself.

Of course he was also loosing motivation, saying: “Listen, if in 5 or 6 years time I haven't been able to walk, than it's possible that I never will.” Well, he did it after 7 years.

How can you explain this to an 8 year old girl? There are things that frustrate Rosa ; her persistent incapability of blocking her kneecaps when she is walking, her weak vocabulary, her bad behavior and on top of that the small “accidents” that she still suffers because she isn't capable of creating the words to warn us that she needs the bathroom.


It's very hard to find motivation when you're 8 years old, mostly when you've spent 5 of those years fighting every single day, like Rosa who, regardless of the great things she has achieved, is still far from doing what an 8 year old kid does.

We, mom and dad are 38 and 45 years old, respectively. For us, 5 years is nothing. For Rosa is more than half of her Lifetime.

Besides, she finds herself quite lonely in amongst her rich library, language studies and maths, because she has very few opportunities of sharing/applying all the things she learns. Last December she completed her small but very own poetry book. Her poems are powerful. It was a big step for her.



 

It's very stimulating for Rosa to receive letters or greetings. She enjoys the volunteer's company who help us in our daily tasks and also her sister's and cousin's company.

I certainly recall a car journey when two of Rosa's cousins where chatting with Maria about Rosa and her abilities: “I always tell my teachers at school that I've got an 8 year old cousin who can understand English and German!” “Yes” the other one adds, “I tell my friends she knows everything about maths and she doesn't even go to school.” And they kept chatting about Rosa 's talents… The good thing was that Rosa was listening to everything.

The good relationship Rosa has with her sister and her cousins is one of the best things in her life.

 



 

 

Rosa 's achievements in the last 9 months:

Rosa suffers a lot less from auditory hyper sensibility.

Rosa is not wearing dipers anymore.

Rosa can follow instructions more easily.

Rosa can control her movements a lot better.

Rosa can control her behavior in public spaces a lot better (restaurants, museums, etc.).

Rosa can undress almost by herself and she's able to shower on her own, even though she still has problems with the soap.

Rosa can open and close a bag's zip.

Rosa can do the braqueacion exercises with help (hand bars).

Rosa can walk in hand 1600m in 25min and 4km in 90min. (Not very many kids her age can do this).

Rosa can walk on the streets by herself (without having to hold hands) aprox. 150m straight. Before, it proved to be impossible because of her auditory hyper sensibility; she would stop because of the sound of traffic and couldn't keep walking.




 


Intellectually:

Rosa can write high level poetry (with facility communication).

Rosa has learned Japanese and can understand it and read it at a medium level. (She is now reading the Bible in Japanese).

Rosa can read books of University level.

Rosa is very good at Maths and she's got an extraordinary memory. She memorizes almost everything she reads.


Physiology:

Rosa hasn't been ill for a year and she's got less digestive problems, although the adhesions that were formed in her intestine after 3 surgeries in her abdomen still cause her trouble when she needs the bathroom.

 


Y: Rosa is happier since we renovated her training room. The room is now soundproof, has air conditioned and an air filter. This means less noise and less heat for Rosa. She's been a lot more relaxed and content.

This Summer she will have her Honeymoon period (program vacation). We hope to spend this time in Germany where we haven't been for 8 years.

With Miguel With Yu, Rosa´s Japanese teacher

This is all for now. We stay motivated as always and we hope we can give some of this motivation to Rosa so she keeps progressing.

Thanks for all your support,

Greetings from Elke, Darinel, Maria and ROSA


Rosa's comment:

What my mum wrote is true but it's also normal that when I don't achieve what has been set I get frustrated.

But my motivation isn't lost. I can say I'm as motivated now as when I started because I'm still making a lot of progress and I don't think of connecting the people who help me through my poetry only but also by showing that we can all progress and develop all other subjects.

There is one thing I want to say to everyone who supports me: I will always trust my mum who is so strong and will never give up. There's something really important in all of this: never stop fighting and never stop praying for my everyday achievements.

ROSA

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