Say hello to a very unfamiliar group of individuals searching for ways to keep their children and others in the eyes of the community and in the world. HOPE which stands for (Hispanic Organization of Parents of Exceptional Children) have been reaching out to families from the Northwest Indiana and Chicagoland area for a little over 2 years now and have been the answer to many of the confused and worried parents. HOPE is an organization that was formed for the sole purpose to help families who have children with disabilities. Leaders of this group include Nellie Feliciano, Sonia Reeves, Ofelia Jimenez, and Maria Maldonado. Out of the four women, three of those are mothers to disabled children. Nellie Feliciano who is the only one without children saw the need for a group and began building a team together to compile an organization that could somehow give families the aid, support, information, and guidance to help grow with their disabled children.
Why we are here
Nellie Feliciano is a Developmental Therapist for St. Margaret Mercy Hospital, in Hammond Indiana, and noticed the lack of support for parents who had to deal with their children being neglected and sometimes even not accepted in some parts of their young lives. “I would hear very disheartening stories of some kids being mistreated because they did not have the same qualities as other children their age and because of that they were rejected,” said Nellie. According to Feliciano, in past history children that were born with disabilities were automatically rejected from their own families. “In this case, Hispanics are the ones who need to be given more attention since most of the parents do not speak English and do not know where to turn to when they have to deal with certain situations and that is where we come in.” HOPE has several helpers who are bilingual and help Hispanic parents with their children’s problems. We direct them to the correct paths to prepare themselves for future endeavors dealing with their children’s disabilities. “The sooner we can step in and help these families, the sooner we can save a family from all the stress, overwhelming, and issues that come across when dealing with children with illnesses.”
The Importance
Nellie stated that it was important for a group like this to come about because the needed information and tremendous amount of help towards the families were the biggest part missing in their lives. “Information that the group provided was to help parents receive notice about services their children may be eligible for (ie: Medicaid, Children with Special Health Care Services – which may cover necessary therapy services), Social Security Disability benefits, therapy, school options, etc,”said Nellie. “It was also formed to help families find support from one another. Although all the children may have different disabilities, there are some common threads, such as the struggles the families may have in finding support among their own family.“ Within these struggles, internal problems begin to occur and that is when we try to come in and prevent further breakdown.”
HOPE works along side with St. Mary’s Church and Father Gibson. “We are allowed to use their hall for meetings and gatherings, this is a huge plus since most places charge us to meet. In most of the meetings that our group have, which generally take place on the 3rd Saturday of each month, the children are separated from their parents and put into a room in which they can all interact and play together.” This past October 16th, Nosotros Us Magazine was able to catch some of these children in full swing as each of them had a smile on their face for the entire time we were there. With over 10 children each meeting, and only four adults to supervise while the parents meet, HOPE receives volunteer help from the Local Girls Scout Troop 147 and they supervise the children as their parents are in another room being educated by guest speakers commonly speaking about benefits, ways to stay active with their children, and other information that many families may not be able to hear anywhere else. This past month the parents were in a workshop that was led by Jane Fuentes from Insource. Fuentes did a workshop in September but was unable to finish due to the amount of interest the parents showed that day.
As Jane promised to return the next month (October) parents were able to come up with more questions and receive more feedback . The workshop continued on into October and was a success that showcased over 20 parents.
Giving the families hope
HOPE does its best to give families the most comfortable state of being, allowing them to not have to worry about anyone starring at their child or even at them. It is a way to escape society and allow their children to play on and live their lives knowing that they are not the only ones fighting illnesses or disabilities. “These parties provide many families an opportunity to take their children to an activity and not worry about their child’s behavior, which is often just part of the disability. Children in the group may have a diagnosis of Autism, Down syndrome, Developmental Delays or other genetic or undiagnosed conditions. For some families it is the only opportunity to attend a social gathering without stares received from others,” said Nellie.
The group has caught the eyes of many so far and not just in East Chicago. HOPE has gotten families from all over Lake County, Indiana and parts of Illinois. “As of right now we are around 50 consistent families but throughout our tenure we have seen at least 100 families come in and out of our organization,” said Ofelia Jimenez. “Our main concern is community awareness. We want these families to know that just because their children are disabled does not mean they shouldn’t be seen or heard in the community, they are just as big of an impact as anyone and these children and parents need to know that. To be accepted in this world is very hard, but we teach the kids that being accepted by people shouldn’t discourage them or anyone for that matter,” said Jimenez.
“Life isn’t about who is the coolest person or most popular, it’s simply about being happy with who you are and being loved by those who truly matter to you the most,” said Jimenez. “These kids all have a lot of potential to do something with their lives, they all have an amazing imagination and their never ending thoughts that spill each minute are so important to us. All of the children here are special not only to HOPE but to this world, and we are just a stepping stone for them and their family so they can be pointed to the right direction and become successful and healthy individuals living each day,” said Nellie Feliciano.
HOPE’s next big event will take place December 5th 2010 at St. Mary’s Church in East Chicago. The Christmas party will begin at 1pm and all members will be there to meet and greet. For more information about the event or about HOPE you can e-mail Nellie Feliciano at
nel4743@aol.com
HOPE is a non-profit organization, and will be completing additional legal work with the help of Attorney Marco Molina who has donated his time to assist us. If you or someone you know needs help with a child concerning his/her disability please contact HOPE.
Down Syndrome Facts:
(Provided by Down Syndrome Association of Northwest Indiana)
• Down syndrome occurs when an individual has three, rather than two copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
• Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.
• There are more than 400,000 people living with Down syndrome in the United States.
• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems. Alzheimer;s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep cease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
• People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strength and talents that each individual possesses.
• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends, and the community enable people with Down syndrome to develop their full potential and lead fulfilling loves.
• Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
HOPE is just one of the many small groups trying to help out families in need and support of their disabled children and because of that they are inspired by the Down Syndrome Association of Northwest Indiana.
Throughout its 30 year history, the National Down Syndrome Society has been at the forefront of Down syndrome research. Through a variety of research programs and activities, NDSS has played a major role in advancing knowledge about Down syndrome in an effort to enhance the quality of life and realize the potential of individuals born with this genetic condition.
To date, NDSS has provided more than $3 million in direct research funding to support the work of scientists and to sponsor Down syndrome research conferences, symposia and meetings. NDSS continues to be one of the largest non-government supporters of Down syndrome research in the world. This commitment has led to improvements in the lives of individuals with Down syndrome and their families in the United States and abroad.
All NDSS research activities are under the guidance of the Science Advisory Board and the Clinical Advisory Board of the National Board of Directors. After NDSS announced its new strategic direction in 2009, most research activities fall under the NDSS National Policy Center and focus on advocacy for Down syndrome research on the federal level.
Source: National Down Syndrome Society.
Visit them for more information at www.ndss.org
Why we are here
Nellie Feliciano is a Developmental Therapist for St. Margaret Mercy Hospital, in Hammond Indiana, and noticed the lack of support for parents who had to deal with their children being neglected and sometimes even not accepted in some parts of their young lives. “I would hear very disheartening stories of some kids being mistreated because they did not have the same qualities as other children their age and because of that they were rejected,” said Nellie. According to Feliciano, in past history children that were born with disabilities were automatically rejected from their own families. “In this case, Hispanics are the ones who need to be given more attention since most of the parents do not speak English and do not know where to turn to when they have to deal with certain situations and that is where we come in.” HOPE has several helpers who are bilingual and help Hispanic parents with their children’s problems. We direct them to the correct paths to prepare themselves for future endeavors dealing with their children’s disabilities. “The sooner we can step in and help these families, the sooner we can save a family from all the stress, overwhelming, and issues that come across when dealing with children with illnesses.”
The Importance
Nellie stated that it was important for a group like this to come about because the needed information and tremendous amount of help towards the families were the biggest part missing in their lives. “Information that the group provided was to help parents receive notice about services their children may be eligible for (ie: Medicaid, Children with Special Health Care Services – which may cover necessary therapy services), Social Security Disability benefits, therapy, school options, etc,”said Nellie. “It was also formed to help families find support from one another. Although all the children may have different disabilities, there are some common threads, such as the struggles the families may have in finding support among their own family.“ Within these struggles, internal problems begin to occur and that is when we try to come in and prevent further breakdown.”
HOPE works along side with St. Mary’s Church and Father Gibson. “We are allowed to use their hall for meetings and gatherings, this is a huge plus since most places charge us to meet. In most of the meetings that our group have, which generally take place on the 3rd Saturday of each month, the children are separated from their parents and put into a room in which they can all interact and play together.” This past October 16th, Nosotros Us Magazine was able to catch some of these children in full swing as each of them had a smile on their face for the entire time we were there. With over 10 children each meeting, and only four adults to supervise while the parents meet, HOPE receives volunteer help from the Local Girls Scout Troop 147 and they supervise the children as their parents are in another room being educated by guest speakers commonly speaking about benefits, ways to stay active with their children, and other information that many families may not be able to hear anywhere else. This past month the parents were in a workshop that was led by Jane Fuentes from Insource. Fuentes did a workshop in September but was unable to finish due to the amount of interest the parents showed that day.
As Jane promised to return the next month (October) parents were able to come up with more questions and receive more feedback . The workshop continued on into October and was a success that showcased over 20 parents.
Giving the families hope
HOPE does its best to give families the most comfortable state of being, allowing them to not have to worry about anyone starring at their child or even at them. It is a way to escape society and allow their children to play on and live their lives knowing that they are not the only ones fighting illnesses or disabilities. “These parties provide many families an opportunity to take their children to an activity and not worry about their child’s behavior, which is often just part of the disability. Children in the group may have a diagnosis of Autism, Down syndrome, Developmental Delays or other genetic or undiagnosed conditions. For some families it is the only opportunity to attend a social gathering without stares received from others,” said Nellie.
The group has caught the eyes of many so far and not just in East Chicago. HOPE has gotten families from all over Lake County, Indiana and parts of Illinois. “As of right now we are around 50 consistent families but throughout our tenure we have seen at least 100 families come in and out of our organization,” said Ofelia Jimenez. “Our main concern is community awareness. We want these families to know that just because their children are disabled does not mean they shouldn’t be seen or heard in the community, they are just as big of an impact as anyone and these children and parents need to know that. To be accepted in this world is very hard, but we teach the kids that being accepted by people shouldn’t discourage them or anyone for that matter,” said Jimenez.
“Life isn’t about who is the coolest person or most popular, it’s simply about being happy with who you are and being loved by those who truly matter to you the most,” said Jimenez. “These kids all have a lot of potential to do something with their lives, they all have an amazing imagination and their never ending thoughts that spill each minute are so important to us. All of the children here are special not only to HOPE but to this world, and we are just a stepping stone for them and their family so they can be pointed to the right direction and become successful and healthy individuals living each day,” said Nellie Feliciano.
HOPE’s next big event will take place December 5th 2010 at St. Mary’s Church in East Chicago. The Christmas party will begin at 1pm and all members will be there to meet and greet. For more information about the event or about HOPE you can e-mail Nellie Feliciano at
nel4743@aol.com
HOPE is a non-profit organization, and will be completing additional legal work with the help of Attorney Marco Molina who has donated his time to assist us. If you or someone you know needs help with a child concerning his/her disability please contact HOPE
