We’re All Experts on Something | Raising a Child with Special Needs

We’re all experts of sorts. Each of us is given something in life that challenges, stretches and stresses us and will eventually qualify us as some sort of expert. If you’re like me, whatever that area is, it’s not the area you’d have chosen to become the expert. I never thought “this” would be my life, never knew anyone to ask for “this”, wouldn’t have voluntarily been in line for it, and I’ve never known anyone to say they hope their child would have it, either. But somewhere in the lot of life – some 1/4 of our population – has been given this challenge and as a result, have become somewhat of an expert. The challenge? Raising a child and/or caring full time for someone with special needs. The bigger obstacle – helping others understand! What makes caring for our son our ultimate challenge, is that it continues every day, every moment, with no vacation from the 24/7 responsibility we’ve been given. While we’ve been weary, exhausted, frustrated, overwhelmed, and disappointed, there is another side to this story. 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. Because we were on a big learning curve, we appreciated advice – taking from others what worked and leaving the rest. Others didn’t need to know if we tried it or not. We’d listen, say, “thank you” (for advice we might try) or “that’s interesting” (for advice we needed to really think about)! Having had the opportunity to hear a lot of “expert” advice over the 29 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). It can be frustrating trying to explain that it won’t work in our case.
• Refrain from telling us how we should feel or what we should do unless you’ve helped us more than a few days and actually know what you’re talking about. (Most people who’ve not cared for a special needs person 24/7 have no idea what is involved. What makes us the “experts” is that we make it look easy because we do it all the time…..all the time…..) Watching someone for an afternoon is a great and appreciated break for a caregiver, but it’s not the same as doing it all the time….
• Ask questions, offer help, show concern – before offering advice.
• If you can’t understand the child (or adult), ask for help. THANK YOU for making the effort to speak with them!
• 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. (Something, by the way, many of us could learn from – and I still am!)
• Don’t shout. Deaf people won’t hear us if we shout and 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 the volume, speed, and tone is what I’d suggest, until you get a feel for the situation.
• “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. EXAMPLE: Saying, “I see” for “I understand” to a blind person is normal conversation. Saying in frustration, “Don’t you see?” lacks sensitivity and compassion.
• Feel free to ask the person with special needs to repeat themselves. As the caregiver, I understand most of what my son is saying, but many people can’t. If you can’t find resolve, gently move to another subject without disregarding the individual. And if you need to end the conversation, politely say something like, “It was great visiting with you. I hope to see you again soon,” rather than just walking away.
• 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! We’ve learned it’s not about being right but about hearing the individual.

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. Maybe you’ll be an expert, too!

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For more information on caring for children with special needs be sure to check out the Special Needs portion of the Family Matters website.