By Mariam Nihal
Saudi Gazette
Goals UAE is a volunteer based community that provides extra curricular opportunities for children with autism. “We are the first such model in the GCC. We do not have a facility or a membership base. Goals UAE works to facilitate programs within the community of Abu Dhabi and we are open and available to everyone,” Khawla Barley, who runs the organization told Saudi Gazette.
Goals UAE ran a small pilot program in November 2014 and opened its public program in January 2015. Goals UAE was established by Barley and Michele Ziolkowski.
Currently Barley runs Goals UAE that facilitates programs with community partners and hosts programs throughout the community including schools, universities and local parks for children with autism.
“We register for each activity separately and open each activity to the general public. While I do not have hard numbers we know that our activities have registered over 1000 places in activities since we began. Many of the children participate in multiple activities but Goals UAE has engaged at least 600 children since 2014. Our recent Picture This art Project engaged 350 children alone, many of whom were new to Goals UAE programs,” Barley told Saudi Gazette.
Discussing the challenges of facilitating the program in the region, she said: “Goals UAE has had an extremely positive response from the community, both institutions and families. There is a great demand for expansion and a huge supply of volunteer manpower. The Goals UAE model is extremely cost effective and I would love to be able to expand this model to create a blanket of programs across the UAE and the region. My greatest challenge in doing this is the fact that Goals UAE runs without staff or budget so programs take much longer to implement then I would like and there is a limit to how many programs I can physically manage while raising my own family. It is my dream to be able to help expand the Goals UAE model, which really is something, I feel the region is ready to embrace.”
Goals was born out of need and Barley explains how her personal life helped shape the cause.
“I am the parent of an Emirati son on the autism spectrum and in spite of his high functioning level and the increasing educational resources in the UAE for autism Abdulla was unable to engage in any activities outside of his school/center day. In 2014 there were zero activities for children with autism. Often Abdulla would come home with gifts from visitors to the center who had provided a party or some form of unsustainable charity. This frustrated me because I saw the desire within the community to help the children but there was no one providing sustainable and purposeful activity for the children to engage in and grow from. I wanted this to change.” She said one of the greatest misconceptions about children with autism is that they wish to be alone. “In Arabic the word for autism actually translates to 'alone'. Individuals with autism often crave social interaction but the common thread among individuals with autism is impairment in social communication; in other words, they simply are not good at social interaction. Children with autism need more opportunities to develop social skills but often they are very limited in social opportunities. Extra curricular activities provide typically developing children with the opportunity to develop social skills and to figure out where their interest and talents lie. Children with autism need even more practice with social skills and because they tend to overly focus on particular activities they also need extra help branching out and trying new activities.” Barley believes it is very important for individuals on the autism spectrum to develop leisure activities in order to combat stress and develop themselves ‘as people’. “The majority of individuals with autism have normal intelligence levels and therefore would suffer if not stimulated with hobbies and activities. Because many individuals with autism may lack the communication or behavior management skills to work or live independently, developing hobbies and leisure activities is even more important. Families often find managing the behavior of the children on the spectrum difficult and resort to allowing them to play hours a day on the iPad, computer or watch favorite TV or movies. This may calm the child in the short term but create long-term problems when the child develops into a frustrated teenager and adult unable to find fulfillment through meaningful activity,” she said.
Prior to establishing Goals UAE most special needs activities were restricted to students handpicked from local centers and not open to the general public. Barley said that while that could be a much easier model for providers to manage, it disables others to access programs. “It also leaves the huge numbers of children on center waitlists, in mainstream schools or being homeschooled without any access to special programs. I wanted Goals UAE programs to be completely open and accessible to everyone. I wanted it to change they way people viewed Abu Dhabi as well. When people can to the city I wanted them to simply be able to do a Google search and immediately find accessible, supportive programs for their children. By partnering with local institutions we keep costs accessible to everyone. Most of our programs are free but when coaching partners do charge we ensure that the costs remain well below the going Abu Dhabi rate. Normally a six-week program will cost AED 120-200. One of the main objectives when establishing Goals UAE was to create a program open to everyone. We have no memberships list or participating centers, etc. We have participants from a variety of nationalities, about 40% on average have been Emirati and the rest are from just about anywhere else. We have participants who are enrolled in local centers, some from mainstream schools, others on waitlists and many being homeschooled by family members,” Barley explained.
Goals UAE provides specific support found most helpful to individuals with autism. Such support includes one-on-one support from volunteer 'buddies' with appropriate visual support and social stories, which can help, prepare children for a new activity.
Balrey explained that Goals UAE works with a variety of community partners to design sustainable, purposeful programs, which are accessible to individuals with autism. “Buddies support each participating child/ young adult with autism one-on-one and offer whatever assistance they need in order to participate. The type of support will depend on the individuals needs. Some children are quite high functioning and require only help in focusing and in such cases their buddies provide a role model for social interaction, practice appropriate social skills and provide moral support. Other children may need promoting and their buddies will actually need to show them exactly how to hold a ball, in the case of basketball, help them choose colors if painting and more. If children are unable to engage in the group activity because of sensory challenges for instance, their buddy can work with them separately. Often this is necessary with children for the first session or two and they can gradually be brought into the group. Many of the children become very attached to their buddies and parents will report that their children, even if they are not speaking much, will ask for their buddy by name at home.”
Barley has three goals herself, the first being a wellness program which would weave together a variety of sports programs for both younger and older children over the course of the year and couple this with education for parents on nutrition and wellness. “Individuals with autism have a much higher rate of obesity and nutritionally related illnesses due to lack of exercise and social play opportunities combined with associated coordination and common feeding issues. The second focus is on the remodeling of how we engage children with autism and special needs in the arts and community arts in particular. This year we have had our first collaboration with Emirati artist, Azza Al Qubaisi. Azza had never worked with individuals on the autism spectrum but embraced the idea and wanted our first project to be all about inclusion. The Picture This project in partnership with Abu Dhabi Music and Arts Foundation engaged 350 individuals with autism of all ages and abilities from Abu Dhabi. My aim is to continue to work with Azza and develop ways in which individuals with autism can be engaged in community art in a meaningful way.”
Don’t Miss: April 29th Autism Education Conference hosted by New York University Abu Dhabi
“I am part of the Planning committee along with another NYUAD community partner and wonderful autism supporter, The Autism Support Network.
The Conference is a unique opportunity within the region, which brings together families touched by autism, medical professionals, leading professionals and students volunteers working in the autism community of Abu Dhabi. Our 2017 conference schedule will go live within a week. The conference is a wonderful opportunity for families to have access to leading medical professionals, workshops lead by professionals as well as exposure to community resources and a social networking opportunities with other families who face similar challenges.
This year we are also holding several tailored workshops targeting the increasing demand from local institutions for help in framing their own volunteer programs in response to the UAE leadership's Year of Giving Campaign. Azza and I will be presenting the" Picture This Journey" during the conference.”
http://nyuad.nyu.edu/en/news-events/abu-dhabi-events/2016/04/autism-education-conference-2016.html
