A Day in the Life

The following information is a small excerpt from Kate’s blog titled “What I Want You to Know” from May 31, 2013. To read the entire post, click here.

Being a special needs parent can be tough. Many of the ways our life is affected are perfectly obvious for all to see. But sometimes the biggest issues are the ones no one sees.

Being a special needs parent can be very lonely.

As one friend put it: “Even though special needs parents are usually surrounded by people – doctors, nurses, teacher’s aides, therapists – we live a life of extreme isolation. It is impossible to care for our SN children and nurture social relationships: belong to clubs, join sports teams, work full time, attend family functions, etc.” Blessedly, the modern world of virtual connections has brought many of us friends from around the world who are living our lives, but this does not replace a good friend with a cup of coffee and a hug.

Thanks for the offer, but we can’t let you babysit for our child.

We won’t even leave a licensed nurse alone with Anabelle until she has completed at least a few days of full shifts with her. What would you do if she started having a seizure or stopped breathing? For a typical kid, you’d call 911, but it doesn’t work that way for a special needs kid. They will always want to admit her and “observe her” for the night, so for us 911 or the emergency room is a last resort. We’ve learned to manage these regular occurrences at home, or else we would spend our lives in the hospital.

It takes us twice as long (or more) to do ordinary things.

Any parent will tell you that dragging the kids along to the grocery store makes the trip take twice as long. Then add in having to get a special needs kid packed and ready to go pick up a gallon of milk. Special needs parents have to:

Dress their child appropriately: If the child is like Anabelle, who cannot control her body temperature, you need to think about the temperature both outside and inside wherever you are going, and plan the appropriate layers.

Wait for the proper timing: For my family, there is only a brief window twice a day when Anabelle can accompany us on excursions – in between feedings, meds administration, catheterization schedule, and (often med-induced) naps.

Think ahead to where you are going: Is it wheelchair accessible? Is there anywhere to change a diaper? And remember, this isn’t necessarily a 10-pound baby you are changing. You may be travelling with a 4’8″, 75 lb., 15-year-old who needs diaper changes.

Pack up all the supplies: This includes the traditional diaper bag plus food and meds if we are going to be gone long and, for many of us, oxygen tanks and suction machines. Get the kid settled in the car and get the wheelchair secured in the trunk (except the fortunate few who have a wheelchair van). While these wheelchairs are technically portable, they are NOT lightweight. I have friends who have thrown out their backs and given themselves hernias lifting wheelchairs.

Do your shopping: Once you get where you are going, you need to unload it all and push the wheelchair – and a shopping cart – through the store. Your 10-minute trip to get milk just turned into over an hour.

A lot of the time, our typical kids are our greater worry.  

It is usually their well-being and future that cause us the greatest heartache. These are the kids who can see what is going on, who will feel the taunts of schoolmates over having a special needs sibling, and who will miss out on vacations and field trips and dance class, because there is neither the time nor the money to provide those things.

Anabelle has never wanted for a thing in her short life. It is her sister, Elyse, who never has two parents at her side on outings or may never get that trip to Disney World she so desperately wants. My typical child breaks my heart much more frequently than my special needs child does.