A parent or caregiver of someone with special needs, needs the ability to bounce back. There was a time we asked each other, “What would it take (not that we want to experience it) for us to hit a breaking point?” We don’t have a list of times we thought we were close, but we do have a few stories that stick with us to help us remember not to quit when things are rough. Here are a few ways we kept mindful of the ability to bounce back.
“Learning to listen isn’t a gift; it’s a skill.” “Anytime is a good time to learn to listen.”
These statements are great places to start in the month of “love” as we share cards, gifts, and time with others. It’s a skill that can be learned and we will be all the better for it. In our family, we are still learning and growing in this area both in our marriage as well as with our grown children, their spouses, the grandchildren, and our son with special needs.
The playground was bustling with laughter and movement, but my boys, then just two and four years old, played in their own quiet way. After a speech therapy session, we stopped at a nearby park, a familiar part of our speech therapy routine when the weather was nice. My older son wandered the perimeter of the playground and discovered sweet gum balls—a spiky green fruit on the gumtree but which dries out and turns brown and drops to the ground.
The lessons I learned while raising a child with EA/TEF have been many and varied. That’s to be expected since our son was born in 1982 with esophageal atresia (EA) and a tracheoesophageal fistula (TEF), two conditions that left him unable to swallow and required immediate surgery. Many of the lessons came about as a result of the surgeries and invasive procedures he endured between birth and age 5. Other lessons came later as he became more independent in adolescence and adulthood. I encourage you to use these ten lessons as a springboard for considering what you’ve learned as well.
Kingdom Focus is what first comes to mind. Those of us who are married and have someone in our life with special needs for whom we have responsibility (often 24/7 and 365!) know that without focus, we are doomed. AND for those of us who are believers in Jesus, we add to that His Kingdom focus and our part in it.
For us, we have 5 top ways to work on our marriage and keep it strong. There are more, of course, but let’s not get overloaded!
The world might seem to have a lot to offer, but as it applies to the caring of a child or loved one with special needs, it offers us things that won’t make us happy and won’t deliver what we need. The world will always lack authenticity and the act of serving will not be very high on the rung of the ladder, by world standards.
When we care for our child(ren) with special needs, it’s self-sacrificing. It is more than a “job” as some might say, it is an undertaking (as one of my friends shared so succinctly with me). Yet some of us have a different level and depth of care. Although our son needs 24/7 attention and care, he can do a good number of things on his own. Cindi Ferrini shares the difference between Self-less and Selfless.
What DO you do when a child works harder to escape a room than he does work the puzzles at the table? How can you possibly know where the boundaries should be with a child who inherently has none? Where is the line between nurturing and structure? While there aren’t clear answers to these questions, there IS clear theology about our family’s place in the Body of Christ. Sherri Wirt writes a short devotional for special needs parents that feel they don’t fit at church.
Over the years, I have been through multiple seasons of planting and harvesting skills with my daughter. My daughter is now entering adulthood with disabilities. There are still skills that she needs to develop to make her life easier. The learning does not stop as she ages, however, the pressure I put on myself all of those years is gone. I don’t need to fix issues. I simply need to support her through them. Evana Sandusky writes on her daughter’s growth through the years and likens it to planting seeds and yielding the harvest.
