After Lucas missed milestones around nine months old, they sought help. They were told to see a geneticist who thought because of Lucas’ unique hair texture that he had a copper related disorder.
Daniel: Menkes Disease
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Author Posts: Orange Socks
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.
Carrie: Gervais syndrome, Cerebral Palsy, Autism, and SCN1A Gene Mutation
Carrie was only 22 years old when she received the unexpected news that her son, Luke, was born with several disabilities. She lived far away from family, and single was single.
Wrayanne: Lennox-Gastaut syndrome
Wrayanne was a first time mom when she learned her daughter, Morgan, was born with a rare severe epileptic seizure disorder. Wrayanne was candid about her struggles and her hopes for Morgan’s future.
Speech Therapy vs Language Therapy
Communication is a basic skill that provides an avenue for our needs to be met. What happens if your child doesn’t have the language to convey their needs? What happens if your child does have language but the way they talk makes it impossible to understand what they are saying? This is where a speech therapist and language therapist can step in to help!
Importance of Sensory Play
Sensory play is essential for all children during their development. When a child engages in sensory play it stimulates different parts of the brain which strengthens neural pathways in the brain. Sensory play also can help children learn to adapt and deal with unpleasant experiences in their world around them.
Caring for Decades: A Story of Parents, Children, and Disabilities
for the “good of the child and the family.” Turns out that direction was wrong. The children have better physical and mental health outcomes living at home than in institutions, and despite the challenges, or maybe because of them, the family is better off too.
Is My Child Ready for Mainstreaming?
Mainstreaming your child with a disability is a big decision. Are they ready? Will they succeed? Each family needs to carefully evaluate their child to determine if mainstreaming is the best option for them
Jess: Bronchopulmonary Dysplasia
Lily was born at 24 weeks gestation weighing only one pound. Lily is a twin and unfortunately, her sister was stillborn. Lily has Bronchopulmonary Dysplasia. Her mom, Jess talks about the grief of losing a child while dealing with the news her daughter had a disability.
Social Media as a Resource
Social media is a platform that allows people from all over the world to connect together. While it can be an incredible tool, oftentimes it can be used as an avenue for bullying and hate. Despite that, there are hundreds of families that have chosen to use social media as a platform to educate and advocate for people with disabilities.
Orange Socks
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