Caring for children with special needs is demanding work. Without adequate support or rest, parents can end up feeling depleted and alone.
The solution, according to experts and parents who have faced these challenges, is to reach out for help, connect with other families of children with disabilities, and prioritize self-care.
Thinking of myself as a health care detective who is solving a mystery makes a frustrating process feel a little bit more interesting.
You have to figure out the motive, gather the evidence, interrogate the suspects, and put together a case.
Our house lost power a few nights ago, during one of 2023’s record-setting storms. For our family, losing power is a medical emergency.
But on this occasion, for the first time, I had access to a portable power station. Portable power stations are rechargeable batteries that can provide hours of backup electricity, which is especially important for people who use medical devices or assistive technology.
Fetal Alcohol Spectrum Disorders are alcohol-related disorders thought to be the most common birth defects in the western world.
A recently passed California law should make it easier for children affected by these disorders to access special education services. The law goes into effect in January.
I made the choice to continue a high-risk pregnancy, but I honor the choice of any pregnant person who opts to terminate given the same set of facts.
What I don’t like is seeing ableism — that is, prejudice against adults and children with disabilities — rolled into discussions about abortion, as has happened often since the U.S. Supreme Court overturned Roe v. Wade.
One in 4 women will experience domestic violence at the hands of a romantic or sexual partner, according to the CDC. Similarly, 1 in 4 adults in the U.S. lives with a disability.
Between these two statistics is an overlap so large it demands attention. Yet, there is little discussion or awareness that domestic violence and disability often intersect.
The state cut funding for social and recreational services for children with disabilities 13 years ago, which meant regional centers could no longer pay for summer camps, swimming lessons and other recreational programs for children with disabilities.
Now the centers have to figure out how to reinstate them, which has led to glitches for families trying to access these services.
The baby formula shortage wreaking havoc across the United States is terrifying for any parent who relies on infant formula to feed their child. It’s especially calamitous for babies and children with special health care needs who rely on special prescription formulas that have also been impacted by the supply shortage.
The shortage highlights an ongoing, systemic failure to ensure vulnerable children have secure access to medically necessary, life supporting products and equipment.
Climate change is a growing threat to people with disabilities. Not only is the weather getting hotter, but Californians are facing more frequent wildfires, poor air quality, evacuations and power outages. These events are particularly difficult to navigate for people with complex medical conditions and those who care for them.
Yet, researchers and policymakers have historically overlooked this vulnerable population when it comes to emergency planning.
We made the decision to send our son back to in-person school last year despite his vulnerability to infection because our district came up with a reasonable, safe plan to make it possible: Every student had to wear a mask.
Just as we were gearing up for a mostly safe year back at school, the Clovis Unified school board decided to snatch defeat from the jaws of victory and create unnecessary confusion over which mask policies would be enforced, despite clear state guidance.