The story continues

March 2007


It's difficult to start this report because it's not easy to find the words to describe all that has occurred during the last period.

What would a mother feel if her child from one day to the next started to speak in complete phrases as if the child were an adult?

She would be scared or amazed, she wouldn't be able to believe it, or would think it was a miracle. This is what happened to me when Rosa started to express herself in complete sentences through facilitated communication, first with the chart, and then with the computer keyboard.


The advances with FC in previous periods were few. But in the Institutes they gave us a one month priority for this program.

I spent the month of October with Rosa , sitting on the carpet in a true battle against her hyperactivity, insisting that she finish every one of the phrases that she had started. The sessions sometimes lasted more than three hours but the results were seen very quickly.

It's the strong emotions, that when they take over Rosa , cause her violent behavior such as tantrums, yelling, and hitting, which together Rosa calls “hyperactivity”.

What can these emotions be: fear of failing, anxiety at not being understood, anger, desire to communicate something and not being able, etc, etc. Also some sounds and visual stimulations can distract her and cause strange behavior.

Through my insistence, she has been adding small victories daily to her list. It took three hours, but she could write complete phrases such as “Anger is my enemy”.

With each phrase she wrote, this fear of failure subsided, and in only two weeks Rosa was able to express everything she wanted in complete sentences and correct phrases without her “Hyperactivity” interfering so much.

Mom also learned how to read a chart of letters which is not easy at the beginning.




 


It was a fatal change; it wasn't easy for the whole family. Rosa demonstrated a brilliant intelligence, from one day to the next she gave opinions and participated in a very critical way in family life.

For six years she was used to observing and understanding everything that happened around her without being able to express even the tiniest part of her intelligence.

For two years we have been using the options chart but Rosa depended on the various answers I gave in order to answer. My themes were almost always below her intelligence level. Now she is the one to create the questions.

 

Rosa 's spoken language has improved considerable in the last period, but her words are not understandable. It was a success for her to be able to add the word “Maria” to the list of words she can say and be understood.

Sadly, this list contains less than ten words. But we have a lot of hope that soon the list will be a lot longer.

The pages that Rosa has written and are saved in the computer are many which describe her feelings, opinions, fears and strong discussions. In the “corner” of Rosa you can read everything that she decides to share.




 

For our family the change wasn't easy. Our Rosa of the sweet smile turned into Rosa that made demands, gave opinions, criticized us and sometimes told us things we didn't like hearing.

It was very important for us to know that she adores her program and keeps watch over its quality and quantity. She also told us how much it has helped her daily to feel better. Now she shares all the suffering that her auditory hypersensitivity and hyperactivity causes her. She is no longer alone. She is being heard.

All mothers believe they know their child. I believed this, in fact, I wrote it in the history, I was totally convinced. But now I have to say that I was totally ignorant, I didn't know anything about her compared with what I know now.


Maria experienced a small crisis. Various times she exclaimed: Rosa knows more than me! Rosa began to invade an area which only Maria had shared with her mom. Now Rosa could also talk with mom, have secrets, and of course Rosa occupied more time and attention than before.

This feeling didn't last long and turned into a feeling of pride which Maria felt for her sister. It was also a huge relief and joy for me to be able to communicate with Rosa . I think it has been the biggest joy of my life. Of course, this joy is shared; we are a more confident and happy family now.

This is how we explain the huge achievements that Rosa has had this period.

It is easier to do our walks if she can tell me when her shoes are bothering her. It is easier to hang from the bar if she can discuss with me the angle of the diagonal or the type of prize she will earn for hanging 10 seconds.

The key word in this period was: Motivation. Rosa is now more motivated and has more of a vision of the future than before.

 


 




OUR ACHIVEMENTS AND DIFFICULTIES

PHYSICAL AREA

Rosa 's walking has improved a lot, not in distance, but in quality. Her legs are much straighter when walking but Rosa is still not able to walk independently on the street or in other public places.

Sounds and any visual stimulation distract her so much that she stops I her tracks and can't continue. Rosa now wears special headphones that cancel out the noise. This has helped a little.

Her manual ability continues improving constantly. Rosa can now join her index finger and thumb to pick up small objects, fruit or other food.

She can hold a paintbrush and paint or draw circles and other shapes with a pencil. She can also write, being helped with alight support of her lower arm.

In the gym program she can now do forward somersaults almost independently with a little push on her bottom.

 

PHYSIOLOGICAL AREA

Rosa was completely healthy during the last six months. The respiratory masks, the CO2/O2 inhalations and the respiratory machine continue helping her improve her breathing.

Rosa drinks from a cup much better. Sometimes she finishes have a cup without stopping which indicates to us that she can now regulate her breathing pretty well.

Rosa 's diet is each time more and more limited until we eliminated all fruits which improved her hyperactivity dramatically. Rosa is calmer now.

 

 


 

INTELLECTUAL AREA  

Rosa now reads anything with incredible speed. She loves to read commercial books and has a weakness for the digital Encarta encyclopedia which she reads in German, English or Spanish. She has a very good memory and learns quickly everything we share with her. She has an insatiable thirst for knowledge.

She likes to discuss movies and books she has read. Everything interests her. She loves to receive small math classes. Rosa is able to express herself in German or English but prefers Spanish because she feels more confident.

Her social intelligence stands out. Years of observation have made her a great psychologist. No one can fool her.

 

SOCIAL AREA  

This is the area that causes the most problems for Rosa . She is able t understand everything and reason at a level much higher than her age. But her ability to express herself outside of FC is very limited.

Her behavior a lot of the times is that of a very young and lesioned child who apparently doesn't understand and the people who don't know her treat her that way. Rosa reacts with frustration and anger. This anger causes her more hyperactivity or abnormal behavior which confirms for these people their first impression. It is a difficult cycle to break.

There are very few people who have “Eyes” and can see to the Heart. For these people Rosa feels comforted and supported, such as with my parents, Liliana and the personal at the Institutes and of course the family.

Since Rosa has begun communicating her self esteem has grown and she asks to participate in all activities. She was able to integrate herself in the Christmas party and with my help she participated in games. And she can now move around the house by herself with less danger.

She is able to follow small instructions, another obstacle that was almost impossible to overcome before.

Normally when we ask someone the favor of bringing us something and the person doesn't react, we assume that they didn't understand. So we repeat what we said in a louder and clearer voice. If we are talking to a child with cerebral lesion like Rosa , in a short time we end up talking to them as if they were an idiot. And of course if this child doesn't react we believe that they can't understand us, because their capacity for self expression is so limited that they can't even express themselves with a facial expression or a movement of the head to let us know they understood. And they can't even follow the instruction even if they did understand it. This is what happened all the time to Rosa , but little by little she is improving.



It was a strong and happy six months. A million thanks to the patterning volunteers and the friends who helped with the intellectual program and translations.

A special thanks to my parents who were here supporting us for a month, attending to the girls with much care and giving us the opportunity to relax a little more than normal.

The help we have received for our next visit to Philadelphia so far is a lot and we thank you with all our heart.

Always we look forward to you support and understanding. We will be leaving on March 17.

Even the littlest help that you can give will be a lot for us.

Affectionately Elke, Darinel, María and Rosa
March 2007


 

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