You may not know that having a child with a disability doesn’t make you an expert on how to conduct yourself in the disability sphere. …

It’s likely that if you don’t experience the world of disability, special needs, or medical fragility when you think of first responders you think of paramedics, then of emergency room doctors, nurses, and trauma teams. For me, unless there is an acute emergency, they aren’t usually our first call. Families…

On days replete with medical appointments, I lift a 40 lbs pediatric wheelchair in and out of the car at least four times though usually six. I lift a 60 lb child into the chair, out of the chair, into the car, out of the car, back into her chair…

The adage about the squeaky wheel is an adage because it’s accurate. The trick is to be squeaky without annoying the person out of wanting to help you. Very recently, I received an automated message and then a call letting me know the caseworker assigned to Téa and who is…

Much of the dialogue around disability policy is focused on the absence of physical access to public spaces, public transportation, and buildings (including schools) among others. Great, super important. …

Traits to look for in a person who works with your child. A few days ago someone asked me whether I was happy with the school we send our daughter to. My youngest attends a private school for children who are high needs, be they developmental or physical. She shared…

You’re allowed to say no. You’re allowed to say no, I don’t want this. I don’t like this. I didn’t sign up for this. You’re allowed to say I hate this. I hate this special needs life, this medically complex life. …

Reframing. We do it to houses and buildings to strengthen them, to make them fit our needs best (or at least, better). Maybe even just so that we can experience where we live or work differently. Maybe to give something that once served us a refresh that is better aligned…

Two years ago my daughter attended an overnight camp for children who are high-needs: they have either complex medical conditions or developmental ones. I thought only about the fun she was having and made the very most of the time my husband and I had to ourselves; three kids, all…