Our challenge? Along with ¼ of the population, we are raising a child who needs full time care because of his special needs. It’s a 24/7 responsibility we’ve been given…and we’ve lived to share about it! Our son Joey is a great gift and amazing blessing – but he came to us with things we knew nothing about: mental retardation, cerebral palsy, epilepsy, and many severe food allergies that could be fatal. The bigger challenge – helping others understand!
Having had the opportunity to hear a lot of “expert” advice over the 31 years of raising my son, here are some things I’d like to offer as my own “expert” advice to the many wonderful people who will come in contact with a special needs person and/or their family at some time in their lives:
- Think twice before offering or suggesting a miracle cure to parents or caregivers– they’ve heard most everything (and probably investigated it).
- Refrain from telling us how we should feel or what we should do unless you’ve helped us more than a few days (not for 3 hours) and actually know what you’re talking about.
- Ask questions, offer help, show concern – before offering advice.
- An individual with special needs often says things we wish we could, but we’d never get away with it….be patient with them.
- When waiting for a response to your comment or question, give them time to respond. Counting to 10 to yourself before repeating your question or starting another thought pattern allows them the needed time it takes for their brain to formulate thoughts.
- Don’t shout – a person who is mentally slow won’t understand us any better. Look to (and even ask) the caregiver for clues if you’re not sure how to respond. Lowering volume, speed, and tone can help!
- “I feel like such a retard” is not a positive comment anyway you look at it. It’s especially hurtful to those caring for someone who is. If you say it and catch yourself, a simple apology is better than saying nothing and moving on. While we’ll pretend not hear it – we did.
- Using a word like see with a blind person, hear with a deaf person, or walk or run with someone in a wheelchair is usually not something to worry about if you are using it in general conversation.
- Feel free to ask the person with special needs to repeat themselves. As the caregiver for help if needed.
- Ask one question at a time and wait patiently for the answer. Count to 10 again. That rule is always helpful.
- When speaking to a deaf person who has an interpreter, make eye contact with the deaf person.
- When conversing with a blind person, don’t “make friends” with their Seeing Eye dog. Don’t pet, offer a treat or otherwise distract the dog from the job for which it has been trained.
- If you’re able to stoop down to face someone in a wheelchair, that’s polite and helpful.
- Stay positive and pleasant. It helps everyone in those awkward moments.
- Don’t correct the person unless you are sure they understand what you are trying to say and “check” what your motivation is for doing so. Their thinking patterns and abilities don’t always make sense to “outsiders” let alone their caregivers!
Perhaps today you’ll meet a person with special needs for the first time. It will make their day if you use something you’ve learned here. Share this with others so they can learn, as well. We all have to help each other…..that’s my advice, and I’m stickin’ to it!
–©Cindi Ferrini (from UNEXPECTED JOURNEY-When Special Needs Change Our Course)