Advocating for True Quality of Life, by Heidi Indahl

Quality of life: it’s a phrase we throw around like candy at a parade. What does it really mean, though? How do special needs parents advocate for the quality of life of their child in a way that allows her unique dignity to shine through? When do we allow the skills and objectives set by the experts to influence us?

Here are five things we consider after eight years raising a child with a rare intractable (not responsive to medical intervention) form of epilepsy. 

Side Effects

Is the medicine or treatment causing side effects that interrupt our daughter’s ability to participate in things she enjoys? For example, one particular medication we’ve tried over the years decreases her seizures by 25 to 50 percent but slows her down so much that her motor skills prevent her from taking advantage of the decrease in seizures. If it meant being seizure free, maybe it would be worth it, but because it decreased her ability to run and play and enjoy the increased seizure window we stopped the medication. 

Safety

Going back to those motor skills, those seizures leave our daughter with a pretty severe foot drop that increases her falls. Not because of her actual motor ability and muscle strength but because it takes a long time for information to get from her brain to her toes. For years we argued with PT about adding an ankle foot orthotic (AFO) to her supportive devices, but they were hesitant because they didn’t want her to lose the muscle function that she had. We spent a lot of time at PT appointments trying to trick and train her brain into working with her feet faster to prevent falls. Ultimately though, nothing worked and adding the AFOs drastically decreased her falls, especially on stairs. I wish we had advocated harder for this one sooner. 

Long Term Gains

In other words, are we squabbling over peanuts? This comes into play in a lot of school conversations. “But she’s really smart!”  Actually, she’s very positive and has a great attitude and incredible verbal language skills. She is very compliant. Her actual processing skills of language and any other cognitive task is about six years behind and hasn’t shown any gain in the last several years at all. We know; we are watching her and the test results! As we’ve entered into the teenage years, academics have been increasingly taking a backseat to other life skills. We know her vocational and academic paths aren’t going to be “typical”, why should her schooling be?

Family Impact

Our daughter needs extra love, care, and attention. That’s never going to change. Nine other people, including mom and dad also need love, care, and attention. She relies on all of us, even the four year old who loves to run to get her VNS magnet off the fridge during a seizure! Medical keto can be a powerful treatment for kids like our daughter, but like that medication above it doesn’t give a whole lot of benefit and it creates a huge burden on the whole family. We’ve tried twice and both times, the cost to the family wasn’t worth it.  

Joy

This one is the most important. When we see a particular activity sapping her ability to share this incredible joy she has been gifted with, it’s time to ask questions. Her joy is an incredible gift to our family and if something is squashing her joy (coming back for you, keto diet), we start to ask if it’s worth it.   

Choosing quality is not always about saying no. Sometimes it’s about saying yes, for example, when a particular activity brings joy and putting in the extra work to make it a priority or pushing for an unconventional treatment plan. It can be easy for special needs parents to get caught in a trap of saying yes to every expert suggestion and opinion. Regardless of your child’s level of need for outside support, you are still the parent. You get to call the plays!

Heidi is a country living Catholic mama from Southeast Minnesota.  She and her husband homeschool and raise eight living children on 8 acres of grass. They’ve also created the Designed for Discipleship System of Evangelical Catechesis. You can learn more about their work at https://www.designedfordiscipleship.org.