Hand to Hold's official blog
For me, the hardest thing about being a parent to a special needs child is watching Caleb, our son who was born with VACTERL, go through what he has gone through: a NICU stay, four surgeries, numerous hospitalizations and ER visits, countless specialist appointments, lab draws, radiology tests, daily medications and treatments, therapy, etc. All [...]
As parents, our tendency is to protect our children and solve their problems – sometimes to a fault. Mothers, especially, have a keen sense of being able to predict what their children need, before the children know themselves, and race to provide whatever that need may be. For parents of special needs children this instinct [...]
Our son Caleb was born with a rare, not well understood condition called VACTERL association. The rarity and severity of his condition pushed us to go to Cincinnati Children’s Hospital for his medical care – over 1,000 miles from home. We have traveled to Cincinnati four times in the past year-twice for consultations and tests, [...]
Just when I think I’ve heard it all, when I convince myself nothing and no one can deflate me – some unwitting stranger does. And always at the moment I least expect it. Maybe I’m having a particularly ambitious day and I’ve ventured to the grocery store with my 3-year-old who doesn’t walk or talk [...]
{Editor’s Note: Below are some great spots for Texans, but Marty has some fantastic tips for getting out and about, no matter where you live!} Getting out and about with a child that has special health care needs can be a challenge. There are two great parks that we love to visit: Morgan’s Wonderland in North San Antonio and the new Play for All park in Round Rock. Both of these parks were designed to be fully accessible. [Read more]
Most parents rarely have the need to have their child assessed, but for the special needs mom assessments become a regular part of the rotating specialist/doctor regimen. We endure assessments in therapy (often times over and over for each of the different kinds of therapy), at the pediatrician’s office and usually with a follow-up clinic [...]
Howdy, I’m Bea and I’m a special needs mom. Doesn’t quite roll off the tongue, perhaps because I, myself, am still coming to terms to being a special needs mom. For the past five years I have been just a plain ol’ mom, occasionally SuperMom or #1 Mom, but more frequently MOM!, mama, or mommy (repeat [...]
Hand to Hold is a nonprofit 501(c)3 parent support organization and information and resources provided here do not intend to take the place of the relationship between a patient and personal physician.