A warm reception for Mr. Scaglione, the founder of the Foundation.

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On the occasion of the 20th anniversary, the Albanian Children Foundation organized a reception in honor and Appreciation of the founder of the foundation, Mr. Domenick Scaglione.

This reception was held to respect the contribution and the human values that the founder and architect of the Albanian Children Foundation, Mr. Domenick Scaglione, has dedicated the last 20 years in terms of health and well-being of Albanian children witnessing tremendous encouragement not only for their families but for the Albanian society as a whole.

In this event, attended by friends, collaborators, donors and parents, President of the Foundation, Dr. Liri Berisha, in her greeting dedicated to this figure expressed her deep gratitude, for the contribution and humanism of Mr. Scaglione.

” Dear Mr. Dominick, I feel glad and privileged to have the opportunity today to express my deepest gratitude and honor, that of staff and parents, but even that of many, many Albanians for what you started to do exactly in their most difficult moments of their existence. . A considerable number of children, sick and hopeless for life, are living today along their family love, thanks to your generosity and tender-heart. Others, unlucky, orphaned or abandoned without any support were educated and work today thanks to your humanism You, dear Dominick, devoted to the Albanian pain because you believed in God and knew that no one appreciates life more than one who has seen the misery and the poverty verge. Like a missionary, you were beside those little and suffered hearts without words, without ado, without exaggerations.. ”

Most touching moments were those of gratitude from people who have benefited from the contribution of the Foundation.

Kristi Myhedini, student, who graduated through a scholarship as a result of cooperation of the Foundation with non-public universities, thanked Mr. Scaglione for the possibility that the Foundation gave her and dozens of young people, giving as a sign of respect, a silver pen.

It was a very emotional moment for Pranvera Bega, Sarah’s mother, who treated the girl with autism at Autism Center No.2. She thanked Mr.Scaglione for the opportunities that the Foundation has provided for the development of the girl, giving a painting made by Sasra, to convey a part her deeply spiritual world and unique talent she possesses.

Amid tears and emotion, Mr. .Scalgione thanked Dr.  Liri Berisha for the reception and meeting of associates and friends of the Foundation. He said that thanks to the humanity we all do better and that the mission must go on and more powerful. He advised that nothing else does a person richer in life except that of giving and the weakest. If we share more attention for the poor and people in need, according to him, then not only you will we be at peace with yourself but will make the lives of others more beautiful.

The reception was addressed by Mr. Genc Boga, representatives of the board of the Foundation, Mrs. Eva Mane, business representatives, donors of the Foundation and Michael Granoff, director of the Albanian American Fund. They appreciated the important role of founder Scaglione in building and growing of the foundation praising his vision and personal contribution invested in all these years.

My child is autistic? What do I do?

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Autism scares. The moment a parent learns from the doctor or a specialist that his child shows such characteristics or is autistic, he find himself in a confused and desperate situation. It has affected his child, the one that he wanted the best for, as all parents do about their children. These parents, differing in character and personalities, do not react in the same way. The same with the roles in a couple, the mother has a different reaction from the father. One does not want to believe or cannot believe, although doubt that something is not going as it should has been tormenting them for a long time. The other cannot believe, because he or she has done everything for his child, has been a model parent, fulfilling every need and desire for his or her child. Others become so dismayed from this event that they lose it. They change their lifestyle, abandon work and everything else, and dedicate themselves to the child, or more specifically to his problem, by making matters worse.

There others who believe that now they should become and act as a specialist for their child and give up their so much needed role as a parent, a role that give them the desire to live. No one can teach you how to life, neither parents, because that is impossible. This idea comes from the young parents, who although in their 20s and 30s are still “childlike” because they still expect everything in life from their parents. For almost everyone the biggest question is Why us? Will our child become like their peers, go to school and become capable for himself? And they are right. The information available on autism is scary, shocking I would say. There’s no cure. These children can find relief only in the States or the UK.

The same with internet, where most of the parents go to so-called doctors who have nothing in common with the real profession, healers, or advisors on everything, bamboozle them even more. Thus begins the wandering from a doctor to a healer. In my opinion this is the most damaging period for the parent, because he or she is become part of a circle that increases autism, as well as for the child, who is losing his “best years”, this is what I’d like to call early childhood years, where wonders, even though in good faith do not result as such for them. It is easy to speak from your point of view, is what some of them think. But it is not. I am telling you that I’ve seen so many children in these years that even if I was made of stone I would be hurting, and I’m not being modest by adding that I do participate in their pain and love (using the words of Edmond Tupja).

Who would dare act indifferent or worse mean before such a beautiful and innocent being as the child. When we grow up things change. Our thinking changes and we became angry and curse the other, oftentimes with reason, because those older than us usually in our everyday life make you. But childhood is the period when we are the best, we are still innocent, we lack the grown up world or they have not managed to teach us the filthy tricks of living. However, let’s go back to our problem. I would like to quote the words of some people, not ordinary, but very famous, some of whom have suffered from this problem on their own.

Children affected from autism have the necessary abilities to move forward and evolve. Today, despite what some old fashioned practioner or literature says there is treatment for autism. It is important that this effective evaluation and treatment begins as soon as possible: the earliest the intervention, the better and fast the results.

Only in this way, despite their slow development in comparison with their peers, these children will be independent. And as I wrote below, they have great knowledge about this field. They have faced autism and they have managed to become not only independent, but they have become the best in different fields of life. What I want to say is that the key for these victories, as well as smaller victories, are the parents of these children, not only the children with these problems. The way we act before our younger ones builds the next man or woman that they will become. The stance and the way you face with this problem, as dismaying and confusing that it can be, it is decisive.

At first I would suggest to pull yourself together, and do this without being alarming, but look for health centers where the child is evaluated from a multidisciplinary team. This is the first step to take after the diagnosis, and half of the job in my opinion if you will pay attention to the people who are evaluating your child. Trust me, the old saying “He who thinks, wins” is a proper one because there’s not time to be lost, get the best information and trust in the real specialists and not the ones who pity you or give you false hope.

Autism is mining for your child’s life, but if caught in early childhood or in time it becomes such if you let it untreated. Therefore the first step taken to learn from specialists who know what they are talking about and the belief that nothing goes away with complaining or suppositions, but being down to earth is decisive. Life goes on and the child though autistic, feels better when he/she sees that he has a father or a mother that act as such for him/her. The child with problems more than any other child needs to distinguish the way family works, the relations among its members. He feels them and is affected by those relations more than anyone else. When a child is affected by autism, you should stand by them, encourage them play, and talk to them about everything and in a constant manner.

To talk to them about the pie you’re making, how you are making it, who will eat it and where they will eat it; what happens in this world; you should talk to him about the things that surround him, and then comment on them, starting with the tiny strands of grass on the ground up to the helicopter flying in the sky. The mother at home verbalizes everything that she does with him in his/her eyes, the father also, and this should occur daily and preferably only with the child. Together with that think about the environment. The environment belongs also to the child, therefore a home, a little “gym” where there are no risks and as a result no No-s the most appropriate place to perform all kinds of activities with the child. Do not be satisfied and do not encourage the maneuvers he makes to the computer, the mobile phone, or the fact that he gets distracted in front of the TV. You should not use it as a tool to achieve goals such as feeding or to leave each other alone. Turn off the TV, or better throw it away is what I tell parents who show surprise listening to me, as it will not only save the child, but also themselves. Consider him/her as other children and take him with you in the matrimonial bed. You should show the same love to him as to others. Also in the kindergarten request the same treatment from educators, as everyone else. Stay by him, not pitting him, but rejoicing in his childhood, as he/ she won’t be that way for long. Consider him/her a real interlocutor, although you are the only one speaking, he feels and records in very sensitive “ways”. Spread peace for yourself and around him. Since language does not impress him much, notice carefully: he more visual. Help him with gestures, mimicry, but never neglect using the word. Be talkative but pleasant, is what I tell parents, and never be insisting for him to talk.

You are not experts, you are parents, and your role in his growth is another. Be careful with the way you behave. For me the greatest evil of autism is the fact that it has the ability to isolate you, meaning to make you the same and isolate you in its world and “plight”. If you have fallen into this trap, it is difficult to come out, but not impossible. Start from the beginning by making it clear to him that things are not achieved by shouting or by being aggressive. If you let him have his way, even once, he will start to use these tactics to win things. Show him that some things are only yours, in the same way as some things are only his, for example: This man here is my husband and your father. In the evening we go to the room to sleep together and not with you. We love you, but your place is here. Continue with life as before, especially go to work and leave the child in the nursery or daycare as long as possible. In the afternoon don’t stop dealing with him, but don’t be annoying, trying to teach them things. You must not forget what you have been told by the specialists, daily intensive therapy according to the needs of the child.

You must be patient, because the specialist will always give you homework, but slowly also skill. Act so, always havingin mind the triangle that we mentioned in the beginning: structuring in the family, in day care and intensive therapy. It is a triangle that autism cannot avoid. Autism may come, and, as we have said, this is not your fault, but you must know that even if we remove the roots, all your and our merits is when you come and ask to help each-other.

Dr.Liri Berisha,Global Autism Achievement Award.

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Dr. Liri Berisha, president of Albanian Children Foundation is awarded by the International organization “Autism Speaks” in New York with the Second Annual Bob and Suzanne Wright Global Autism Achievement Award.

Dr. Liri Berisha, president of Albania Children Foundation is awarded by the International organization “Autism Speaks” in New York with the Second Annual Bob and Suzanne Wright Global Autism Achievement Award.This award that was presented to Ms. Berisha during the Seventh Annual World Focus on Autism meeting that is taking place alongside the United

Nation General Assembly meeting in New York City comes as a recognition of:

– Dr. Liri Berisha remarkable leadership in autism community, for raising public and professional awareness of autism in Albania;

– establishing a state-of-the-art clinicalcenter for services, training and research in Tirana;

– supporting the launch of Southeast European Autism Network of ministries of health from regional countries;

– participating in UN and World Health Organization technical consultations as well.

This award was personally presented to Dr. Liri Berisha by the cofounders

of the international organization “Autism Speaks”, Bob and Suzanne Wright, in the presence of many first spouses from Asia, Africa, Latin America, Europe, Middle East, who have been inspired by Dr. Liri Berisha leadership and commitment.

Ms. Wright said: “Dr.Liri Berisha is a unique combination of a visionary and a fighter. I knew, from he first moment we met at the Shafallah Forum in Qatar way back in 2008 that she would change the world. She has changed the future for people with autism in Albania and now she is working on the entire region. Ladies and gentlemen please join me and giving a warm applause to my girlfriend Liri.”

Dr. Liri Berisha, being very honored by this award, said:

“Dear Suzanne and Bob, this those who are challenged by autism in the world. As a mother, pediatrician and the president of the Albanian Children Foundation, I cannot think of a better recognition for the hard work and achievements we have made over the past years, improving the lives of all those affected by autism in Albania.”

The international organization “Autism Speaks” during the Seventh Annual World Focus on Autism meeting in New York, stressed the rapid increasing of children with autism in the world and the increasing needs of this community. Data suggests that autism affects approximately 1% of the global population. One of the essential issues for discussion were the opportunities of turning innovation into real actions, an effort led by Autism Speaks to address the universal challenge of autism spectrum disorders (ASD) through awareness-raising and service improvement.

Albanian Children Foundation empowers the techniques of intervention for children with autism.

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Now adult children suffering from autism do not feel abandoned anymore. Intervention opportunities for this age are becoming real for the first time in Albania. Thanks to the latest techniques being introduced by the Albanian Children Foundation, the Regional Center for Autism in Farka has provided its therapists with the most recently method, “Pivotal Response treatment” that helps adult children to easily develop skills acquired through individual therapy, in any other premises that the child goes.

Regional Center for Autism in Farka put another milestone in terms of treating Autism spectrum disorder expanding its professionals’ vision. With the support of the Albanian Children Foundation, the Regional Autism Center held a few day training for its staff of therapists with new methods of treatment for children affected by the autism spectrum disorder. For this purpose, with the recommendation of the “Autism Speaks” International Organization, the Foundation has invited to Albania two trainers from California, US that are part of one of the most avanguard communities in the application of modern methods of autism spectrum disorder. They are Janice Chan and Tiffany Wang of the Child and Adolescent Services Research Center, Rady Children’s Hospital, San Diego, which are experts specialized in one of the latest and contemporary methods called “Pivotal Response Teaching” (PRT).

Under the guidance and assistance of the two trainers, PRT methods is introduced for the first time in Albania by Albanian Children Foundation for the professionals working with children in the Regional Center for Autism in Farka. This training would not have been possible without the chain of training currently available in the ABA, which principles are applied in the Center.

Ms. Tiffany Wang, Child and Adolescent Services Research Center, Rady Children’s Hospital, San
Diego says: The Pivotal Response Treatment pays much attention and takes advantage is that it focuses in motivating the child. First we see what the child likes more and after we receive these preferences, we keep the level of motivation so that he might be ready and disposed to be learned. The advantage of this method from the others is its naturalness. So, this can develop into any environment from teacher, parent or therapist and skill’s development is easier at the therapy rooms, at home or in class.

But what are the benefits for children affected by autism spectrum by implementing this method?

Janice Chan, expert at the Child and Adolescent Services Research Center, Rady Children’s Hospital, San Diego, says: What we are doing at the Autism Center in Farka is moving this intervention from one to one therapy to group therapy. I was informed that the Albanian Children Foundation is preparing for the opening of a center with different classes for older children and what brings this training is to use this method in classes. This model empowers the treatment received till now and raises it to a new level to intervene in more complicated and problematic cases of autism spectrum disorder. This working model after learned from the therapists, adds the interventionist techniques skills, which in other words means: all this will be translated into interventions to a greater number of children, whether they are older or untreated before.

Denada, mamja Emilisë , sfidon Autizmin e së bijës duke sjellë në jetë djem binjakë në ditën ndërkombëtare të Autizmit. (EN)

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Denada Çapi: “Autism is not a tragedy, the ignorance is!”

Emili, a 7 year old girl from Durrës and one of the many children of the Regional Center for Autism in Farka, has delivered a strong message to her parents. With only two years of therapy she has surprised everyone about the progress she has made ; not only did she turned down the speculations if one day she will be a normal child, but encouraged her parents to open their heart and arms to two new lives just to challenge this April 2. Denada Çapi, the heroine and courageous Emili’s mother, on the eve of World Autism Awareness Day and just a few days before she brings to life these 2 angels, shares with us the successes of Emili and enthusiasm of becoming a mother for the third time and these time double.

How is Emili improving? How is she today?

We meet again after a year. I would say that this year has been a different innovation for Emili. Emili has had many progresses, has made greater steps compared to a year ago. She began to speak, to make sentences and above all understand, that for me this is the most important. That means she has progressed immensely. She has changed a lot from year to year.

Have you expected this immense change to Emili?

No! No! I had not expected it. Because I had read a lot and had the idea that as soon as it was diagnosed it was better and later diagnosed fewer results. But everything turned out differently. Although Emili was diagnosed a bit late because she began therapy at the Albanian Children Foundation only at age of 5, yet she has achieved a lot.

Do you feel satisfied that every effort you made for your daughter is being rewarded by Emili?

A lot. First of all I thank God from the bottom of my heart. When Emily was born, maybe not every mother would accept it. I became a little selfish and hypocrite. I began asking myself: Why I? Why me? But seeing Emili, the outstanding work that is done with Emili and it has given its fruits, today I thank God from the bottom of my heart. If someone would ask to go back to the second pregnancy to choose another child, sincerely, I swear that would never chose another child. I would chose Emili again!

Meanwhile, we have news from you. Emili will soon have two brothers and your family will extend. Was this a difficult decision for you?

These boys have really been a surprise. It was unplanned. It was as emotional in terms of panic as well as in terms of a new adventure, but I believe it will be full of love. Personally, I was just a little bit afraid, but positively. While my husband and other family members a little bit more afraid. I do not blame them for this. But today we are quiet. We can’t wait for the babies but the person who could hardly wait is Emili. Emilia has made us all to welcome these children with so much love and we imagine that two younger brothers will be good to her too.

Usually, we have noticed that when there have been born children as in the case of Emily, parents deterred other pregnancies. It was not your case. You got over your will and fate.

I would like to say to all the mothers who have a child with problem, such as that of autism, or health, social, economic problems, etc., a child is a blessing, a blessing from God and helps in the process of family happiness. This is very important. Many see this initiative as a hard venture, another one is surprised. Although they do not express it, but the way they see me, it seems like they say me two things: is she heroine or crazy?! I think none of them. It is simply the desire of a mother. Taking into consideration the joy the first two girls brought to me, two boys would bring even greater joy.

Why did you choose to bring to life these children on April 2?

Yes! I wanted so, to bring to life on April 2. The reason is great. As this day is World Autism Awareness Day, as a mother I would like spiritually and emotionally, to make a protest, primarily within myself, then tell everyone that although various diseases affect people, or different problems affect our health, we are still here, we are regenerating. This is a kind of challenge. A gentle challenge to reality because life goes on.  And what’s most beautiful than two little angels coming to life! Whatever these two angels will be, I accept my fate again.

What is your message on World Autism Awareness Day?

I will deliver my message not only to mothers who have an autistic children, also to all people. Symbolically referring to the pea that Albanian Children Foundation has chosen for Autism, where a grain is small, another is soft, another grain might be strong, I would first say to mothers: Patience!  We must accept our fate and not oppose it. Not complain why it happened to me, but how would I handle it. The moment that the mother accepts the fact that I have a health problem with my child, I’m sure that everything will later go better.

Strongest message will go to fathers. For me, a mother who has an autistic child, is the heroine, because she must leave everything aside, herself, home and other children to take care of the autistic child, educate and integrate him. I deliver this message to fathers for more motivation, kindness and help first towards their wives, mothers of their children and their children. If they do not understand us, there is no one else who can understands us.

I thank all the people who stand by me, that understand me; I thank those that understand Emili and would like this awareness be extended in the entire country, because Ignorance is tragedy. Autism is not any tragedy.

Durrës, April 2014