During a routine ultrasound, Madison and Ty found there was something was wrong with their baby boy. When they went to the specialist, they were told their baby’s bladder was large, and his kidneys were covered in cysts and had little to no function- a condition that...
Author Posts: Orange Socks
Madison and Ty: Expecting a Terminal Baby
During a routine ultrasound, Madison and Ty found there was something was wrong with their baby boy. When they went to the specialist, they were told their baby’s bladder was large, and his kidneys were covered in cysts and had little to no function- a condition that...
TRAK
TRAK is a specialized ranch that helps connect people with animals and their community. They are located in Tucson Arizona and have been operating for 15 years. Jill and Scott, the founders of TRAK shared their inspiration for starting TRAK. Gerald also was able to talk to a few employees as well as a few parents of kids who have benefited from TRAK’s unique program.
Rebekah: A Brother with Asperger’s
Erika and Steve- Autism
First signs something was wrong Erika and Steve first noticed something was different with their son Blaise when he was 18 months old. Erika recalled, “He went to daycare and we would go in and notice that all the kids are playing in one area and he's over to an area...
Kristy and Andrew: Pfeiffer Syndrome
utero something was wrong and were candid about their worries and stress. When Hadley was born all of that changed.
Expectations for Your First Occupational Therapy Visit
Lacey OTR/L, an occupational therapist at Roots Therapy in Park City, UT shared some insights on what to expect before the first visit, during the first visit, and what to expect during subsequent sessions. She also shared what makes therapy successful for parents and kids.
Mariah: THAP12 Mutation
for good. She is a fierce advocate by paving the way for future research to help others who may receive the same diagnosis.
Regan: Goldenhar Syndrome
Matthew has three very rare abnormalities. He has been diagnosed with Goldenhar syndrome, agenesis of the corpus callosum, and an extra copy of his 78N22 chromosome. Now at 12 years old, Regan, Matthew’s mom, shares her experience with Matthew so far.
Danielle: DDX3X syndrome
Dani and her family fought hard to receive an official diagnosis for her daughter Hayden. After many specialists they finally received a diagnosis of DDX3X. So rare that there that at that time there were less than 500 people that have ever been diagnosed with this genetic deletion.
Parents Hoping to Outlive Their Children
When we work with patients with adult children at home with IDD, as appropriate, the topic should be broached regarding their plans. We need to educate ourselves on the support services available in our area. Often, parents have no knowledge of existing resources for them and their children. Armed with good information, we can help our patients plan for their children with IDD outliving them and help relieve their anxiety about it.
Glass Children: The Overlooked Siblings of the People We Treat.
We work with children, adolescents, and adults with chronic conditions: mental illness, medical conditions, intellectual or developmental disabilities. We do the very best we can to treat the patient, but what about their siblings? What about them?
Best Buddies
Chances are if you have a child with a disability, you have heard of a program called Best Buddies. While their most common program is creating friendships with people with disabilities and their peers, Best Buddies has several programs geared towards helping people with disabilities all over the world.
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