Through my years as a special education teacher, I have known a number of incredible parents. Mothers and Fathers who started out this journey of parenting just like all of us did. They moved through pregnancy looking forward to having a perfectly beautiful bundle of joy. They anticipated raising a child through all the stages from baby to toddler, to school age, to adolescent, to adult. They expected first words & steps, play dates, school activities, ball games, sleepovers, college days, weddings, and grandchildren.
However, life doesn’t always go just as we planned. When a parent doesn’t get the child they expected, life will be turned upside down before it can get right side up again. Parents will go through stages of grief and hopelessness before they come to acceptance and hope.
Last school year, I had the privilege of knowing some incredible parents. There were a few of the moms who were particularly inspirational to me. I saw these moms twice every day during drop off and pick up times. Often, they stayed a few extra minutes to talk to me about their children, their lives, and their experiences.
As I listened to their stories, frustrations, and fears, I felt such empathy. They had to fight for every little victory they received. With one mom in particular, there were fights with insurance companies to help pay for necessary mobility equipment. There were fights with school districts to get the best education program for her child. There were countless doctors and therapy visits. Her daughter had a specialist for most every part of her body. She had a neurologist, orthopedist, gastroenterologist, cardiologist, ophthalmologist, urologist, pulmonologist, geneticist, and pediatrician. She had physical therapy, occupational therapy, speech therapy, feeding therapy, and mobility specialists. Feeding equipment for her g-tube which included the formula, tubing, pump, etc. cost $2500 per month before insurance. They had to buy a very expensive, special van with a lift as the child’s weight became too much for her mother. Aside from a wheelchair, they had to buy special equipment such as a large size car seat, bathtub lift, large size potty chair, hospital type bed with safety rails, special diapers, and more. The time and money invested in this child was more than I could even get my mind around.
I talked to this mom about things that those of us not living in the “special needs” world need to know about helping those in her situation. While she had some practical suggestions for me, the one thing that I found most heartbreaking was the feeling of isolation that she had. While she had some new found friends in the special needs community, she had almost no relationship with old friends and even some family. Once she had her special baby with all the baggage that came with the diagnosis, friends dropped out of sight. In her words, she said, “If someone would have just dropped by with a Starbucks or something. Just anything to know that they cared about us and what we were going through. That would have meant so much!”
I know that we as a church are usually good about sending a card or taking food to people. But, I want to give you some suggestions that I found on a website geared for special needs parents. (www.mommiesofmiracles.com)
- Deliver a meal in a non-returnable container
- Purchase a gift card to a restaurant that has take-out, gas station, grocery, super center store like , pharmacy, or coffee shop
- Provide or hire lawn or housekeeping services
- Purchase hospital parking tokens or vouchers
- Send or give cash
- Provide a Netflix or movie subscription
- Deliver coffee
- Give of your time (allowing parents to nap or to have a date, play with siblings, babysitting)
- Give time or money to a cause or organization that is important to the family
- Lend your ear and a shoulder to cry on
- Visit-and not just when in the hospital
Most of all, just don’t abandon families who find themselves in these circumstances. Just as some special needs children may need parental support throughout their lives, there are special needs parents who will need support from us through out their lives. Let these families be your opportunity to show the love and compassion of Jesus.