The sign took me by surprised. My first reaction out loud to my husband was, “The perks we ‘get’ having a handicapped son!” We chuckled, and gave thanks for what we called “a perk”—free and convenient parking!
We realize that over time, some wonderful things have come about that really do help us in this special needs journey. But while helpful, we also look upon some of them with different thoughts. Sometimes we’ve felt like we were pitied. Other times, we look back being puzzled, and yet most of all, we are pleased! Let’s walk through our list together!
This list won’t be totally inclusive, but the needs we have for our family—and maybe yours—include handicaps that are
Physical
Visual
Intellectual
Hearing
Neurological
…for a start.
A few things that first popped into our minds as things that help individuals with disabilities:
Handicapped parking signs
Ramps
Road signs for “deaf children at play” and “blind person’s crossing”
Pathways of cement for motorized and other wheelchair vehicles
Leveled curbs
Braille notations in elevators, at doors and other entrances
Electronic door and drapery openers and more
Sinks and counters at wheelchair height
Toilets that are taller than normal
Family bathrooms in public places.
When you look at this list—and we know you could add a lot more of your own to this list we have started—do you find these things are helpful, or do you sometimes feel pitied because of dealing with a handicapped person/child? We have felt at different times:
“We’ve been given a delightful perk!”
“When you talk to us a certain demeaning ways, we feel you ‘pity’ us.”
“When you act a certain way or ask a certain kind of question, we’re puzzled!”
“When you are kind and thoughtful, we are always pleased.”
Photo credit: Yomex Owo on Unsplash.com
For us, you, and anyone who reads this (maybe it’s a good time to share this with family and friends!)….here are a few things to consider:
PERKS - We really have experienced a lot of perks with and for our son Joey. We often call him our “free” magnet. So many kind people have recognized his love for sports and have blessed him with a hat, shirt, or some fun item that he will truly enjoy! It’s so nice when others take the time to notice what Joey likes, and engage him in a bit of conversation.
The perk isn’t always a gift. I recall one lovely gentleman at a gathering engaging with Joey about sports. I know how this goes, with Joey’s very low verbal abilities. As I watched from a distance, I waited for the right timing to rescue this wonderful man so he didn’t feel awkward. I thanked him with some kind words, helped to interpret a bit, thanked him for his kindness and helped him to move on to another conversation with others, so he didn’t feel trapped. We’ve also had perks that have moved us up in line, or other helpful actions when people really “get” how hard long waits can be for one with sensory issues. Some things that can be difficult include lots of people yelling, children running around, not able to tolerate the hot sun for a long time due to reactions to medicines and other ‘invisible’ issues; the list goes on. Suffice it to say, those who’ve noticed us in these way, have been so very appreciated for making the effort to make our life a little easier. Often, when a person with special needs has physically, mentally, or emotionally had all they can take, caregivers can’t always predict that timing, and it becomes very difficult to turn the page back to a nicer story. Meltdowns are so very predictable in a very unpredictable way! So perks lighten our own mental and emotional health, too! THANK YOU!
PITY - At some point in our journey with our person with special needs, we get to a place of true understanding and contentment with our place in life, including the frustration, exhaustion, and many other positive and negative aspects. But in and through this entire journey, we want our child to be well-loved. When someone says things like, “WOW, that must be hard,” or “How DO you DO it?” there is a sense of pity. One of the saddest feelings I’ve experienced is when someone looks at our son, then us, and then at the floor. It happens a lot; in fact, most of the time. Let’s turn that pity into direct eye contact, a smile of delight instead of pity, kind words, and helpful acts of kindness and sincerity in how you treat our loved one and us. That would mean so much.
PUZZLED - Whether it’s how to know how to handle or deal with a situation, how to respond rather than react, or how to move forward when feeling awkward, we know the answer is best when we show kindness over frustration, gentleness over meanness, and thoughtfulness over selfishness. Be polite, and kind, and so many of life’s puzzles will be solved!
PLEASED - Over our 39 years of caring for our Joey, so many strides have been made to make life work better for individuals with special needs. From the endless alphabet soup list of special needs (ADHD, OCD, etc.), we have seen much progress. Sometimes we have to look for the silver lining, but we always find it: people who have been delightful to work with, medical workers who’ve helped make our life and the life of our loved one better, organizations that work for you to lend a hand, and places that have accommodated our needs. The best progress in recent years is the FAMILY BATHROOM! Traveling alone with Joey has often proved challenging. At 6’4” and an adult, he still needs bathroom help. It’s been hard to sneak him into a ladies room to use the facilities. Even when I make an announcement, I’ve received unwelcome looks and comments, and so have his sisters when they’ve been with Joey.
From the ministry for whom we’re writing, to the college campuses we’ve seen that have become totally handicapped accessible, welcoming people with all kinds of disabilities, to people making inquiries and caring like never before, we choose to look forward on this route to the great things being done and already in progress for people with special needs! Progress is always slow, but we won’t be concentrating on the deficits, pity, and ignorance of others, or ways we’ve been slighted, treated negatively, or ignored.
Life is too short, and we are too busy in this caregiving place to rest in the negative. Each of us should be valued, because we matter to God. We will work and advocate for our loved one until we can’t anymore, and with that legacy, we will be pleased.
Dr. Joe and Cindi Ferrini share their newest book: Love All-Ways: Embracing Marriage Together on the Special Needs Journey. They are authors, speakers, and bloggers for several blogging sites on marriage, family and special needs. They speak nationally for FamilyLife Weekend To Remember Marriage Get-a-Ways, authored Unexpected Journey – When Special Needs Change our Course, and have been interviewed on Focus on the Family, FamilyLife Today, Janet Parshall at “In the Market”, Chris Brooks of “Equipped” and various other radio and television venues. Connect with them at www.cindiferrini.com, www.facebook.com/cindi.ferrini, www.facebook.com/UnexpectedJourney/ and www.facebook.com/MyMarriageMatters/.
