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In search of a cure

Denise shares her stories with us with all the predicaments she went through and the support she found in the expatriate community when she took the courageous step to live her home country in search of assistance and may be a cure for her autistic son, Tommaso

It was the morning of 2nd of july 2007,  my son's second birthday, and we were on our way with him to the hospital for a visit with a pediatric neuropsychiatrist, the third doctor we consulted in a short period of time.
For the first time, the doctor told us straightaway that Tommaso suffered from a disturbance of communication and that he would need tailored therapies for at least two years.
The doctor did not leave us any doubt, my son had autism.
That was a radical change for me and my family.
We were about to transfer to the French Congo where my husband's company had offered him a good assignment, instead we stayed back in Italy to take care of Tommaso.

A lenghtly evaluation process followed, which last six months, at the pediatric neuropsychiatric unit in Mantua, my city of birth, as well as physical examinations (MRI, elettroencephalograms, genetic testing etc.), the results of the majority of exams were either negative or within the norm.

The service offered at the NPU was good, but limited to three sessions a week of 45 minutes each, and a year later we could not see ANY improvement.
It was now june 2008.
My frustration was soaring and while doing my research in a bookshop my eye fell on a book "Trattare l'autismo" (Treating Autism) based on the book by Stanley Greenspan, founder of the method DIR floortime. The author of the italian version was Maria Teresa Sindelar, a pediatric neuropsychatrist practising in Italy.
I called her immediately and booked an appointment to meet with her.
Doctor Sindelar practice was based in Rome and there we went with Tommaso. The meeting was immensely useful. We learnt how to get his attention, how to interact while playing and how to tune in his 5 senses, but due to the medical system constraints in Italy all the work had to be carried out at home. A huge burden for a family on its own.
The only services offering DIR were in the USA, so we asked the doctor to find one in Houston, a city were we had previously lived between 2003/4 and were my husband could potentially get another assignment from his employer.
It was a lucky find, not only there was a school in Houston, but its supervisor was Serene Wieder, the DIR founder's right arm.
My husband then asked his employer if he could be relocated to Houston, to no avail.

After a period of uncertainty in January 2009, I left for Houston with Tommaso, while my daughter's Agatha would stay back with my parents in Italy and my husband started working in Nigeria.
My objective was to evaluate if it was worth considering moving to Houston so Tommi could attend the school.
Tommaso started his attendance at the Bridges Program with the Texas Children Hospital in Houston.
The care and involvement of the school's staff was immediately evident and strong. I was so touched  and conquered that I decided to stay in Houston and have Agatha, six years old, join me shorlty after.

The Bridges Program school is open 4 days a week three hours a day:

- two days are dedicated to individual therapy attended also by the parents, who can learn techniques that can then be used at home, 

- two mornings are set aside for group sessions. The children play and interact with each other in groups of three children, each one group monitored by a therapist whose focus is to develop group play.

Six months later though, despite having noticed some progress, none involved Tommaso linguistic capabilities. A friend pointed me towards another method , the Son-Rise Program, and to find out more I signed up for a start up course in Massachussetts.
The Son-Rise program was created by the parents of an autistic child, who refused to give up by not following the advise of the doctors. In the 70's doctors advises parents to place their autistic children in institutions, since the diagnose for autism was that it was incurable. Their son was 2 years old when one doctor after another told them that there was no hope for him.

If anything it strenghented their purporse, and they were even more determined to do everything they could to help him. Their approach was to accept and respect the way, as well as his behaviour, and decided to join him in his world. For two years and a half they spent the entire day in their windoless bathroom slowly conquering his confidence and attention and opening a communication channel that was viable for both.
Many years later, their son, the same the the doctors deemed intellectually deficient, went on to graduate with honors from one of the most prestigious university in the States and is now spearheading the program together with his parents.
After their son's incredible recovery they developed a program which they named Son-Rise (more information on their website www.autismtreatmentcenter.org) based on the complete acceptance and the 3E tecnique: Energy, Excitement, Enthusiasm.
The 3E are the ways the parent/facilitator communicate with the child and through which he is able to to attract him to his/her world and out of his isolating autism.

I have started the program with the help of volunteers, I recruited in the expat community and the local network. This is the program which takes place in the afternoon, the time when volunteers bring joy and enthusiasm in Tommaso's playroom and try to open up a communication channel.

I have been so fortunate to be able to count of the help of people whom I met thanks to the expatriate network. In fact upon my arrival in Houston I connected with the Italian group, which informally gets together once a month, and within that group I was able to recruit the current volunteers.
At present I am not able to reach the 8 hours a day recommended by the program creators and I am looking for more volunteers.

to achieve my goals I am counting of the solidarity of the expatriate community to find them.

If you are interested in an experience that could be as enriching for Tommaso as it will be for you, please do not hesitate and get in touch with me at denise_gandolfi@yahoo.com
I would be extremely grateful. In fact, thanks to this program Tommaso has started understanding the meaning of the verbal communication and to use it by saying correctly some words and giving an approximation of others.

For us these results were astounding since Tommaso had completely lost the use of the speech for the past 10 months.
Enormously helpful was also meeting in Houston, Arturo Volpe, Tommaso DAN's (Defeat Autism Now) doctor. Doctor Volpe has a great experience in biomedical therapies and nutrition. Thanks to his diet, Tommaso, who suffered from malnourishemnt, started gaining weight and stopped suffering from reflux, all without the use of medications.
Should you find yourself in a similar situation please do not hesitate to get in touch with me to share experience and suggestions.

NOTE OF THE EDITOR

There is a lot of controversy surrounding biomedical therapies and for anyone truly interestedin getting a full picture it is highly recommended to read the article The lure of a cure by Jim Giles, published on New Scientist, 29 June 2010. The article can only be read online by subscibed users. To access the article click here.