Families affected by deafblindness face great challenges. Many of them want to help other families dealing with similar struggles.
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When families of deafblindness connect, they all benefit as a result.
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Scroll down this page to meet some of our families.
FAMILIES OF DEAFBLINDNESS
Adams Family
Kolt Adams
CHARGE Syndrome
Casey Adams was born and raised in a small community in southern Arkansas and graduated from college with a degree in Radiologic Technologies. She and her husband Nic, were married in 2009 and have 2 young sons. Their oldest son Kash, tends to be more ‘free spirited" of the boys and is incredibly smart, intuitive, and tender hearted. While Kolt has more of a reserved personality. He is slow to object and quick to forgive. He has a gentle nature about him and is mostly happy just to be in the presence of others.
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Kolt was diagnosed with CHARGE Syndrome shortly after his birth in 2013. Among a long list of diagnoses, He has also been found to have optic colobomas and severe hearing loss. Thus, Kolt is considered Deaf-Blind and he has had to learn how to compensate for his visual and hearing deficits. Some of Kolt's favorite family activities include bouncing (trampoline), swinging, wrestling, day rides on the side by side, and weekends on the sandbar. He loves going to school and gets quite upset when he can't attend.
Casey is excited to join a family leadership organization that aims to assist Arkansas families with dual sensory impairments, because being from a rural community, she understands some of the barriers with which families and individuals with deaf-blindness are faced in these specific areas. Adding value by raising awareness concerning the needs of the community with deaf-blindness, Casey also hopes to be a voice for not only Arkansas as a whole, but especially for the families and individuals with deaf-blindness in the rural areas where resources may be insufficient.
Ball Family
Hunter Ball
Cytomegalovirus (CMV)
Aleena Ball
Shaken Baby Syndrome
I am Cindy Ball my husband is Danny Ball we have been married for 44 years. We had 3 kids, Danny Lynn, Jason and Amy ages 42, 39 and 38 respectively. In 1990 my brother’s 2 kids came into care. Courtney and Corey now age 29 & 28, they became our 4th & 5th kids.
In 2003 Danny and I became foster parents and have been ever since. Out of 88 fostered kids we have cared for we have added to our family Brooklyn now 21 years old, Hunter age 16 who was born with cytomegalovirus (CMV) he requires total care has Deafblindness, cerebral palsy and many other complications. Hunter’s room is where I go when I need peace and calmness, he is so sweet and has the most beautiful smile. Talking to him always helps my get through tough times.
Then there’s Carlee age and 13 Joshua age 12. Aleena is the youngest, age 9. Aleena is diagnosis is shaken baby syndrome which caused the deafblindness, cerebral palsy, along with many other complications, she required total care. Aleena brings a smile to me when I think about her. She has so much spunk she think, she’s the boss of the house. She can yell so loud for a child with a trach and can be so rowdy at other times she can be so sweet. Some days she is a blessing to be around and some days are such a challenge.
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Brittany age 11 is still in our home as a foster child. She has not yet been released to be adopted but will be our 11th child when that time comes.
I would be so grateful to be a part of the family leadership organization for Arkansas. I have found it difficult to find the resources to help my children communicate and believe that your organization has a wealth of resources, with that information, I could better help my children and other families. I feel blessed to have the resources and the people in our lives that I have. It has made these travels less troublesome. I would like to make other families’ road better and I want to encourage other families in their journeys.
Rivera Family
Jordan Rivera
Chromosome 22q11.2 Deletion Syndrome
Oscar and Kerin Rivera were married June 2, 2001 in New York City where they were both born and raised. On March 13, 2002 they were blessed with the birth of Jordan Caleb after a very normal pregnancy. Jordan was born both blind and deaf. It was two years until he was finally diagnosed with Chromosome 22q11.2 Deletion Syndrome, also known as DiGeorge Syndrome. Gigi was born May 26, 2010.
Jordan recently celebrated his 16th birthday. He enjoys school, church and family time. He has a great sense of humor and loves to make people laugh (when they laugh, he laughs). Jordan is a music lover. He enjoys a large array of genres and is incredible at keeping a beat. Jordan is a joy to everyone who meets him, and very loving towards his family.
Oscar and Kerin are excited to be part of a family leadership organization in Arkansas that will provide direction for parents of dual sensory impairment, as well as bring awareness of needs associated with deaf-blindness to the larger community. Their desire is to come alongside other parents who are on a similar journey and encourage them at whatever stage of the journey they might find themselves. They are happy to be part of an organization which will serve as a voice for the deaf-blind community in support of parents, and which will help resource these families.
Their stage of this journey has them looking ahead to the reality that Jordan will be aging out of the education system within the next five years. They see this family leadership organization as a vehicle to support families that reach this transitional stage into adulthood. As Oscar and Kerin seek continued support for Jordan, they also desire to help reach the yet unreached parents of dual sensory impaired in Arkansas. They believe that by being part of this family leadership organization, they are participating in a support system for these special families by bringing awareness of needs, such as the vitally important need for interveners in the State of Arkansas, to the education system, government agencies, and other organizations poised to be part of this support network.
Stuart Family
Benjamin Stuart
Cerebral Palsy
I am Nancy Stuart. My husband is Jonathan Stuart and we have two sons, David Paul and Benjamin Stuart.
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My son Benjamin is 14 years old, requires total care and has deafblindness, cerebral palsy, and a long list of other diagnoses. Even though he is spastic
quadriplegic and non-verbal, he has a sassy attitude and can express himself very well with a laugh, groan, yell, or eye roll. He can also melt your heart with a smile. When the boys were younger, I said my older son David Paul was Tigger and Benjamin was Winnie the Pooh. (Now my older son is 16 and totally embarrassed by such comparisons).
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I would like to be in the Family Leadership Organization for Arkansas because over the years I have struggled to find resources and advocate for my son, and I want to help other parents facing similar circumstances. I have been blessed to have met so many awesome caring people in my journey with Benjamin, and I want help other parents connect as well.