Monday, July 23, 2012

Getting To Know Us

This was originally posted in 2008, but I've spoken to a couple of parents this week who may have missed it the first time...


• Listen for the cry of the baby we just gave birth to, only to hear a small moan

• Wonder why our baby is not rolling over, lifting his head, watching us move, or many of the other developmental milestones

• Know how an NG feeding tube and a heart monitor work

• Don’t understand why our baby feels so floppy

• Just want to see one smile from our toddler, one glance into our eyes that seems meaningful

• Have nebulizers, feeding pumps, syringes, tubing and extra peg tubes in our child’s closet, the car, and at school

• Keep an envelope on the back of the front door that lists all our child’s diagnoses, all the meds, and contact information for all the specialists who follow our child. This envelope is given to the rescue squad each time they come to our house to take our child to the emergency room. Eventually, we don’t need the envelope because all the squad members know our child. They even know where our child’s bedroom is in the house because they have been there so often.

• Greet the emergency room staff by their first name

• Know which schools in our school district offer which programs, and we know which programs to avoid because we have heard from other parents.

• Know and have had conversations with the school’s director of special ed, the compliance officer, and the superintendent. The secretaries for all those people have our names and phone numbers on speed dial

• Have a list of attorney's names and phone numbers pinned to our bulletin boards at home

• Often don’t attend church because we can’t find one that welcomes our child

• Avoid taking our child on errands because we can’t take the stares and rude comments

• Say we get used to the stares and rude comments and that they don’t really bother us. We are lying.

• Know the difference between occupational therapy and physical therapy, and we know that our child can have speech therapy even if he or she doesn’t speak.

• Know where to find the toys best suited for our child’s disabilities, but usually we can’t afford them. Instead, we know how to adapt regular toys and books.

• Have car seats and helmets for our teenagers.

• Probably haven’t slept through an entire night since our child was born – even if our child is 19 years old.

• Know the best way to remove feces from walls and clothes.

• Know how to strategically dress our sons so masturbation will be more difficult to accomplish

• Never leave the house without our child’s comfort item, and at least two backups to that comfort item.

• Long for close friendships, but usually have none. If we do have a close friend, it is usually another parent with a severely disabled child.

• Have alarms on bedroom doors so we know if our child starts to roam at night.

• Lock up medicines, foods, and sometimes even sharp objects.

• Know the names of IV antibiotics and at least 7 seizure medicines

• Know all the rules of the Family Medical Leave Act

• Fear what will happen when our child can no longer see the pediatrician and we have to find another doctor

• Have a freezer full of macaroni and cheese, and a refrigerator full of chocolate pudding.

• Know which hospitals have the best food in their cafeteria

• Know the type of doctor who makes prosthetic eyes

• Are deeply in debt because of all the stuff insurance won’t pay for, like home modifications, adapted devices, special clothes, lawyer bills, and the list goes on and on

• Have nightmares about what will happen to our child should something happen to us, the parents

• Love our children more than life itself


Are the parents of a child with a significant disability, and this list is only the beginning….

Please feel free to add to it.

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