100 Million People are affected of autism spectrum disorder.

USA, 8th annual meeting of World Focus on Autism

On the occasion of 70th anniversary of the General Assembly of the United Nations and 8th annual meeting of World Focus on Autism , President of the Albanian Children Foundation, Dr.Liri Berisha, was the guest of honor of wife of the Secretary General of the UN, Ms. Ban Ki – moon and co-founders of “Autism Speak” Bob and Suzanne Wright.

In this meeting which gathered First Spouses and dignitaries from across North America, Asia, Africa, Latin America, Europe and the Middle East, was discussed how to increase more awareness about autism and improve services to people affected by this phenomenon.

The participating nations discussed the ongoing questions arising about autism and how all together must implement the 21st century goals. During the meeting, the Albanian Children Foundation was on the focus of each presentation through video footage of the activities developed over the years in Albania about this cause.

The Co-founder of “Autism Speaks” Suzanne Wright, during her speech said: – “Autism is already a dynamic issue. The community of people with autism continues to grow with frightening rates. And today the people of this community has reached to 100 million people suffering from autism spectrum disorder. What is necessary today is to be united and share the vision that we have and to turn each day as a World Focus on Autism”

The event provided first spouses and dignitaries with the rare opportunity to speak with one another about the state of autism in their home countries. At this 8th annual meeting, Autism Speaks presented the third annual Suzanne and Bob Wright Autism Achievement Award to Dr. Shekhar Saxena, Director of the Department of Mental Health and Substance Abuse at World Health Organization, Geneva.

To commemorate the third recipient of this award, Bob and Suzanne Wright, invited the wife of Mr. Ban Ki-moon, Mrs. Ban Soon-taek and Ms. Liri Berisha to be present at the prize giving and a concurrent picture. The second Suzanne and Bob Wright Autism Achievement Award was received last year by Dr. Liri Berisha.

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

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?

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.

Ambassador of the State of Israel in our country Mr. Boaz Rodkin visits Regional Center for Autism

The head of Israel’s diplomatic corps accredited in our country, Ambassador Boaz Rodkin, visited the Regional Centers for Autism 1 & 2. Welcomed by the president of the Albanian Children Foundation, Dr. Liri Berisha, Ambassador Rodkin was introduced with the facilities, therapeutic services and models of works.

The ambassador of Israel said He was impressed by the infrastructure and the work done at the center. I was surprised when I learned that such centers are working in the countries in the region with training staff and specialists.

Ambassador Rodkin promised to give his support in establishing contacts with institutions and professionals dealing with autism in Israel, a country with advanced standards of the work done with children with autism.

The meeting was also attended by Mrs. Linda Dean, representative of the “People to People”.

Dr. Liri Berisha gifted to the guests their national flag, a paper craft, handmade of children with autism disorder with the assistance of therapists.

Sarajevo: Albanian Children Foundation signs the protocol of engagement of the Balkan Inclusion Platform

Dr. Liri Berisha honored with the Award of Appreciation for contribution to persons with disabilities.

Albanian Children Foundation became part of the Balkan Inclusion Platform that’s was held under the patronage of Prime Minister of Turkey H.E Mr. Ahmet Davitoglu on May 5, 2016 Sarajevo, Bosnia and Herzegovina.

This platform is part of the World Inlusion Platform, known as an NGO to local government and the private sector aimed at spreading the culture of inclusion for persons with disabilities.

Balkan Inclusion Platform, involves all the Balkan states. It aims to promote more activities in the field of education, culture, social, technology, accessibility and employment for persons with disabilities.

At the opening of the conference, the participating countries represented by the most powerful organizations in the field of disability and Ministers of Social Affairs signed the protocol of engagement.

On behalf of the Albanian Children Foundation, Dr.Liri Berisha signed the protocol addressing her personal commitment and the foundation that she leads to the fulfillment of the goals of this platform.

“Given that Albanian Children Foundation has contributed over the years with the assistance of the social categories in need, it will continue to do so. For children with disabilities inclusiveness, who will be tomorrow’s generations, should provide services and equal opportunities in all fields. This guarantees them the possibility of full participation in community. Often, reality tells us that there is still a lot of discrimination and exclusion. ”

Dr. Liri Berisha was awarded by Deputy President of the World Inclusion Platform for her contribution and assistance provided to persons with disabilities.

Likewise Mrs. Berisha was given a certificate of planting a tree on behalf of its commitment for the inclusion of these persons in society. This tree was planted in an area reserved by the Ministry of Forestry and Water of Turkey, called as the World Inclusion Fores, where any organization, government or individual who gives his contribution to meeting the goals of this platform is sown a tree as a sign of gratitude.

Kosovo, 1 in 100 children with autism

The conference on the rights of children with autism is held.

1 in 100 children is born with autism in Kosovo. Many of them kept the hidden for the society by their families and the cases appear not supported by anyone. This condition of children with autism spectrum disorder became known at the “National policies on protecting the rights of persons with autism in Kosovo “organized by the Office for Good Governance in the Government of Kosovo two days ago in Prishtina. The Albanian Children Foundation as the main guest at the discussion panel was represented by the psychologist, Dr. Oriola Pampuri.

Dr.Pampuri presented in this conferences the Foundation as an example of best model for treatment in the Region and the improvement of these children. The working model of this foundation, through the Regional Centers for Autism 1 and 2, based entirely on scientific standards of the international organization “Autism Speaks” said Ms. Papmuri, enabled over 40 children to attend school while the foundation’s role on raising awareness has convinced many families to seek help when they notice the first sign Due to the awareness, today the age of early diagnosis has decreased from 3.5 years that was some years ago, to 1.5 years.

Dr. Oriola Pampuri “Common Education, Faster integration ”

In the scientific topic “Common Education, Faster integration” that Dr. Pampuri presented in this conference, was emphasized that Inclusion is a belief that all students can be part of general education. The philosophy of inclusion by Dr. Pampuri reduces the doubt between special education system and that of general education. The studies show that thanks to the inclusion of autistic children in public schools with the presence of a therapist, the child acquires an improved behavior and social verbal skill in the classroom. Autistic children, have the potential to improve as much as other children. Using the right strategies, many of them show a significant improvement in such an environment.

President of the Autism Society,  Cene Krasniqi: “Children with autism are not supported.”

“Society needs to know that we work with them in childhood, they can become contributors to the society; may become independent and contribute to this society, but if we do not do and if we do not work with them at this youth stage they will be quite a burden to the society even in the future. As such there is a need for opening many other centers to accommodate them or let them without support, “said Krasniqi.

Autism Conference aimed reaching out needs for those affected by autism and addressed in state institutions in order to develop policies to protect the citizens suffering of this phenomenon.

The spouses of the diplomatic corps visiting the Regional Centers for Autism.

Children gift handmade national flags

Throughout Autism Awareness month, Regional Centers 1 and 2 in Farka and Mjull-Bathore, Sauk, welcomed four ambassadors and spouses of ambassadors of the diplomatic mission in our country. Accompanied by the First Lady of the country Odeta Nishani, representatives of diplomatic corps were welcomed from the Albanian Children Foundation President Dr. Liri Berisha and the staff.

The spouses of the diplomatic corps were introduced with the centers, therapeutic services offered there and the work. A poignant and thrilling moment for this ladies was receiving as a gift their national flags, crafted from the hands of children with autism disorder with the assistance of therapists. These works have served not only as focus therapy for these children but also as a integration working model.

Dr. Liri Berisha conveyed the ladies a brief explanation on this disorder, the opportunities that exist for their rehabilitation and the advantages of the early intervention.

Let’s support them today so they will be independent tomorrow.

By Dr. Liri Berisha

A decade ago almost all of us have been uninformed regarding the phenomenon of autism which silently affected children, shut down and handicapped spiritually and physically entire families, and which the stigma and guilt forced them to do what ought not to be done in the name of parental love – being silent and hiding the phenomenon. The feeling of pain, uncertainty, fear, economic devastation, and facing the unknown coexisted in an uninformed society that not only wasn’t aware of the phenomenon, but neither accepted it, nor consequently knew how to help. Today this belongs to the past, though not so far, but we still are far from what it should be and is required.

Years ago I did not think that in such a short period of time we would be able to achieve a progress that we proudly judge as special, as well as very realistically we are convinced how much remains yet to be done.

Opening on 2nd of April, on the World Autism Awareness Day of the Autism therapeutic center in Kukës, ended our dilemmas that Tirana would remain the only oasis for a limited number of children, giving thus hope and support to parents. The model of work in Tiraina is used in other centers such as Korça, Elbasan, Struga etc. The staff that will provide training for the therapists of the center of Kukës will be prepared by a group of trained professionals from the bigger organization “Autism Speaks”.

Service parameters will be consolidated gradually with methods and practices done in Tirana assisted by specialists of the field from the United States.

For the first time after a two-year period, the Albanian Children Foundation in cooperation with researchers of American Universities managed to develop a DVD that teaches parents gradually and step by step how to work with their children. Very soon this DVD will reach the most remote households as a therapeutic self-study program for parents who cannot reach out the centers.

This DVD will be accompanied with the appropriate books after the testing which is being performed by prominent American academic personalities. This study was extended in some cities like Tirana, Elbasan, Berat.

Meanwhile to the library is added another very important book which was completed a few months ago “100 days Kit,” a book that will instruct not only parents but also everyone who deals with this disorder. This book follows the translations of necessary books for parents, educators, teachers and therapists.

Following the publications the Foundation this year began publishing a series of children’s books of this spectrum that will help them implement important and necessary processes. This series begins with oral hygiene, a process necessary as well as difficult for all children. Earlier this year the Foundation set up for the first time dental service for the children of Regional Centers for Autism in Tirana. This was because these children unlike others have difficulty accessing this service and to assist them in dental diseases therapy is very useful with them. Studies have shown that to reduce phobic behaviors displayed by these children for dental treatment studied procedures should be applied, thus we suggest and propose the establishment of several units for dental services to children with autism where the Foundation is willing to provide therapeutic support for the staff that will serve these children. Today these children wander from one clinic to another to receive the service, because for dentists it is difficult to work with these children.

Together with the specialists on this field, after a serious study the Albanian Children Foundation was able to attain the therapy cost scheme of autism therapy. The study of more than a year was submitted to the Ministry of Health wishing of being studied and implemented as soon as possible.

Collaboration with Autism Speaks is an extraordinary luck for the autism community in Albania, as well as in the region. Cooperation with this powerful organization contributed to the establishment of “Southeast Europe Autism Network “, in Tirana, in cooperation with the Ministry of Health, where the Albanian Children Foundation plays the role of secretariat for this network.

Thanks to the services offered at the Regional Autism Centers opened by the Albanian Children Foundation today proudly we say that 40 children have been able to reach public and private system structures, being equal and mainstreamed with their peers. This dream almost untouchable by their families, today sounds common in full public view. Thousands of hours of therapy, patience, and sacrifice, today translate into hours of knowledge and integration.

But still much remains to be done in terms of providing these services. The doors of education should be more generous with these children. Our kindergartens and schools are having many difficulties to be welcoming for children of this spectrum, while children have a big need to integrate with their peers. Stigma and discrimination, in many cases are a harmful barrier for parents and family members.

What I want to raise today and that would be of interest to all parties is the creation of a network of assistant teachers, to create for the children of this spectrum facilitation opportunities of education and integration. The Albanian Children Foundation is willing to lend its contribution to the training of these teachers, there remains only the call of the Ministry of Education and their identification.

Today, a big problem is the absence of official statistics which is a result of the lack of a national strategy. Often journalists, as well as foreign ask: What are your statistics? This question as well as many others because of the many unknowns of this phenomenon remains unanswered. The initiative we took 3 or 4 years ago with the primary health services for screening in some polyclinics of Tirana gave some surprising results.

An unusual flow of parents arrived at our evaluation centers. Children who were diagnosed with autism spectrum disorders began treatment, but this remained localized. Think about the effect that this study would have with a screening focus if it would be extended to all the primary system of the country.

It is time that society does not only gasp showing mercy and pity, but to be aware that there are obligations towards this phenomenon. Today is the moment to pose another question, what about all of those who are of working age? Will these parents continue to live with the fear of what will happen to my child when I won’t be around anymore? This painful and difficult phenomenon demands more effort, knowledge and commitment of many stakeholders.

Let’s get together, says the UN resolution to get involved and to give hope to this population, by affecting through the drafting of soft laws in their well-being. Therefore we must know the rights of the children with this disorder. We must appreciate the potential that they have and give them the chance as all children to education, employment and integration.

Let us give them a hand TODAY so that they will be independent TOMORROW!

Autism this year spoke from Kukës

Kukës with a new center for autistic children. The foundation supports furnishing the center and staff training

Kukës spoke this April for Autism. For the first time the scope of services for children with autism spectrum disorder will also be in the northern part of Albania, Kukës, turning thus Kukës into the first city that embraces the social policies for this category, not only in the human dimension but also the institutional one.

Mr. Bashkim Shehu ,Kukës Mayor, during the announcement of the project for the reconstruction of the social center, said that in his city the phenomenon of autism spectrum disorder has increased significantly in recent years and the number of families seeking help for treating their children with specialized therapeutic services has increased.

According to Mr.Shehu, Kukës Municipality, the Albanian Children Foundation and the Swiss Cooperation Office will modernize this service center to offer standardized internationally certified academic programs.

On behalf of the Albanian Children Foundation, Dr.Liri Berisha, congratulated Kukës Municipality for this initiative and expressed the generous contribution of the Foundation to identify social services that will be offered, provision with books and methods, as well as staff training.

In a message addressed to local professionals and parents present at the event, Dr. Liri Berisha emphasized the inclusion of these children in public educational structures and therapeutic delivery of free health services. Integration of these children is an investment for the future. Let us give them a hand today, so that tomorrow they may be independent- concluded Mrs.Berisha.

A new book about oral hygiene

On the occasion of April 2, World Autism Awareness Day, Albanian Children Foundation brought a special edition about oral hygiene for children with autism spectrum disorder. Being one of the main problem of oral health to these children, the foundation through this publication aims to convey the right information on how this process, almost unbearable for children and their parents, become normal without phobic behavior. While visual pedagogy, that this book brings through the best images for the  mouth rituals, today estimated by the researchers as the best model of improving oral hygiene in children with autism. Regional Center for Autism No.2 has already introduced it as a daily practice of this service enabling oral health for children. The book is distributed for FREE.