Nine Things NOT to Say to a Parent of a Special Needs Child

Q. Recently, my friend Anna called and informed me that her 6-year-old son, Jeremy, was diagnosed with an autism spectrum disorder (ASD). She told me about some of his symptoms, including temper tantrums, outbursts, and the challenges he faces socially and academically.

Since I had never experienced it, I honestly didn’t know how to react or the right things to say, and I really wanted to be helpful and not hurtful. However, she seemed even more upset at the end of our conversation. In retrospect, I think I may have said certain things that came across the wrong way, in asking her if ASD was genetic, suggesting she eliminate certain foods from Jeremy’s diet, and telling her that he is a great piano player, for a disabled child. Luckily, we are very close and she forgave me.

Since you work with special needs families, I was wondering if you could educate me and others about how to talk to a parent of a child with special needs with empathy and sensitivity. Also, Anna mentioned to me that she doesn’t know which way to turn when it comes to planning for Jeremy’s future. He could need help for his entire life, but right now, it’s too soon to tell. Thanks very much for your help!

A. As a parent of a child with autism or any other special need or disability, many concerns come to mind including: What does it mean to have a child with special needs? What will the future hold? If something happens to me, who will be there for my child and how can I ensure that his or her needs are met? Many friends and family members want to show their support, but are unaware of the best way to show that they care and are listening, without asking the wrong questions and seeming insensitive or judgmental.

Below are examples of how to phrase sensitive questions so they come across the right way, from a member of our staff who has a special needs child and has heard it all (and is very forgiving!):

1. What not to say: “I didn’t know anything was wrong with him.”

What to say instead:  A comment like “I didn’t know he had those difficulties, he looks great” might go over better.

2. What not to say: “Is it genetic?”

What to say instead: It is better to avoid this question, but if you really want to know, you could say, “do they know what caused his challenges?”

3. What not to say: “He’s going to grow out of it, right?”

What to say instead: Children don’t grow out of permanent disabilities or medical conditions. Most parents have had to let go of the denial and accept this fact. A better way to phrase this question is “how’s he doing now?” or “has he learned any new skills lately?” Give your friend an opening to brag a little about her son. Parents love to talk about their children and their accomplishments!

4. What not to say: “My friend from college has a son with autism, so I know what it’s like” or “my friend from college has son with autism, too. He’s really good at algebra. What’s your son gifted in?”

What to say instead: People want to connect with other people and they often try to do this through shared experiences. My recommendation is a comment such as: “I know another child who has autism and he’s really into trains. Does your son have any interesting hobbies?”

5. What not to say: “Why didn’t you stop having kids after the first one?”

What to say instead: It’s not your place to judge anyone else or the decisions they make. I would suggest making a comment such as: “I didn’t realize you had 4 kids! I bet they keep you busy.”

6. What not to say: “Have you tried eliminating red dye from his diet?” or “did you see the Dr. Oz episode about the curing power of Omega-3?”

What to say instead: Be cautious not to phrase a question about natural remedies as a suggestion to cure the special needs child. Maybe a good alternative would be, “have you seen the research they’ve been doing on food dyes with children who have certain allergies? It looks really interesting.”

7. What not to say: “He’s one of God’s special angels.”

What to say instead: The above statement may be heard as condescending when it’s reserved only for children who have special needs. A better option might be: “what a cute child, he’s got a great smile.”

8. What not to say: “I don’t know how you do it. You are a great mom”

What to say instead: It feels awkward if you compliment a mother for taking care of her child’s basic needs, because that is what parents do. A better way to say this is, “you’re such a great mom; your kids are so polite!” or “you must be so proud of him, he’s a great kid.”

9. What not to say: “Your son has such a lovely voice for a disabled child.”

What to say instead: Parents of children with special needs like to hear the same things as most parents, such as “what lovely manners your little ones have,” or “you must be so proud of your daughter” or “your son has a lovely singing voice” are nice things to say. Note the absence of a reference to the child’s challenges.

Hope these are helpful and that you feel more comfortable talking to your friend about sensitive subjects in a manner that shows compassion and empathy.

Special Needs Planning

You asked about how your friend can plan for the future. Parents of those with special needs are tasked with planning for their children throughout their lifetime, as many of them will outlive their parents but might not be able to support themselves and live independently. Nothing is more comforting than knowing your child will be taken care of should something happen to you. Meet with a Certified Elder Law Attorney who specializes in Special Needs, such as myself, to discuss options for your family.

As a parent or guardian, you want to ensure that your child with special needs will remain financially secure even when you are no longer there to provide support.  A Special Needs Trust is a vehicle that provides assets from which a disabled person can maintain his or her quality of life, while still remaining eligible for needs-based programs that will cover basic health and living expenses.

If you have a special needs child who will likely need care for life, it’s important to provide legal protections for your child. The Fairfax and Fredericksburg Special Needs Law Firm of Evan H. Farr, P.C. can guide you through this process. Be sure to check out our dedicated Virginia Special Needs Website at . If you have a loved one with special needs, call 703-691-1888 in Fairfax or 540-479-1435 in Fredericksburg to make an appointment for an introductory consultation.

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.