Child with Down syndrome

Learning your child has been born with a birth defect, a disability or a life-threatening condition inevitably breaks a parent’s heart. But what happens when your own family — flesh and blood who have promised to love you no matter what — run in the opposite direction?

Coping with isolation, hurtful remarks

Parents of children with special needs share how they learned to cope, and experts share tips on how to move forward.

For many reasons, some family members may choose to withdraw from their relationship with a parent of a child with special needs or — probably worse — remain a part of their world but punctuate time together with crass, thoughtless and sometimes incredibly painful comments and questions.

"When will you put your son in a home?" one mother asks her daughter, who has a child with Down syndrome.

"Oh, look! He can feed himself! He is doing just wonderfully!" says a well-meaning relative to another mother of a child with Down syndrome.

Jane (not her real name) shares her first experience with pain, weeks after her son was born with Down syndrome. "[My mother] called… and shared with me that they had a program near her where he could learn to be a janitor. She was looking into these programs, she said, 'because I am learning to love [your son].'"

Origins of missteps

What prompts a family member to live on the horizon of a beautiful child's life? Dr. Kay Seligsohn is the staff psychologist for Massachusetts General Hospital's Down syndrome program. She has worked with families of children with special needs for more than 20 years, and shares some theories — and solutions.

She points to two big reasons family can be out of touch with what a parent needs — good intentions based on decades-old knowledge and, yes, sometimes simply the general inability to be compassionate.

Outdated information

"The field of pediatric psychology is really young," Dr. Seligsohn explains.

"You have to cut your family a break."

"If we as the professionals are just beginning to really understand the range of functioning in children with disabilities, you have to cut your family a break.

"[Family members are] often bringing outdated knowledge to their relationship with your child. It becomes the job of a parent of a child with Down syndrome to educate your family, friends and support system," she advises.

How to educate family

"The big message is that most people want to be helpful but they’re overwhelmed and don’t know how," Dr. Seligsohn emphasizes. "We all too often have expectations of our family that we never make explicit. The important piece is to be clear communicators."

Dr. Seligsohn recommends the following to help educate your family:

  1. Provide resource materials. These may be books from your local support center's lending library (e.g., most Down syndrome associations have these) or, if your family member isn't an avid reader, videos can be helpful resources. Dr. Seligsohn advises finding books that cover a topic in general rather than personal accounts, which tend to focus on one child's conditions instead of the range of possibilities.
  2. Be direct. "People need permission to be direct and upfront… to say, 'Can we have a conversation about the types of help that would be useful?'" Dr. Seligsohn says.

Preparing for painful comments

Dr. Seligsohn points out families of children with special needs often encounter similar painful comments "packaged in different forms." She advises leveraging the years when comments from family, friends or strangers are beyond your child's comprehension. "You have the luxury of using the younger years as practice time," she says.

Think before you reply

Rarely is one prepared for a painful or rude question or comment, although we likely spend weeks if not months afterward rehashing what we wish we'd said — and coming up with stellar responses.

Indeed, questions will catch parents off guard, so it's important to think about how you’d like to respond. SheKnows asked Dr. Seligsohn to address a common question that can be painful to answer: "Doesn’t medication exist to manage your child’s condition?"

Dr. Seligsohn says to ask yourself two questions before answering a painful question:

  1. Do I dignify this question with a response? "If it's a grocery clerk, they don’t have any right to know anything about [your] child," Dr. Seligsohn says.
  2. Do I want to answer this question now? Your child may be with you, or you may want to address the question in depth and not have the time.

Choosing not to answer

If you decide you do not want to answer the question, Dr. Seligsohn suggests two types of replies, both intended to help the questioner realize he or she has asked an intrusive, inappropriate question:

  1. "Do you typically ask people what types of medication they use?"
  2. "That’s a very interesting question to ask a customer."

When you need to reply

Sometimes, the person asking the question has a need to know and understand the answer, for example a teacher at your child's school. If the timing isn't right, "Have a two-line response [ready] that educates the person and helps them understand," Dr. Seligsohn offers.

If a thorough response will take more time or you prefer to answer without your child present, Dr. Seligsohn suggests a simple reply of, "I really want to answer that question, but it’s a long answer. Can we talk about this sometime in the future?" Then, be sure to loop back at a more convenient time.

Unyielding relatives

Sometimes, family members "simply are unyielding in their expectation," Dr. Seligsohn explains. "There are times when certain family members don’t really get the privilege of knowing your child, [and] there are certain family members who can’t tolerate differences."

"I could not believe what I was hearing... [I thought], that could be your granddaughter that you're making fun of right now! "

For example, a family member may expect a 4 year old to act a certain way, but perhaps your 4 year old is not at the same level. In that case, Dr. Seligsohn recommends a direct approach: "My 4 year old is really more like a 2 year old, so I think if you think of him that way, you’ll do fine."

Sometimes, family members go too far. Ann (not her real name) has a daughter with Down syndrome and recounts hearing her father-in-law make fun of children with special needs. "I could not believe what I was hearing... [I thought], that could be your granddaughter that you're making fun of right now! I lost more respect for him that day and will never leave her with just him."

When everything seems fine

Often, families "see [our child] as this cute little girl who is doing so amazingly well, so why would I need any additional help?" explains Christi, whose daughter has Down syndrome. "[The perception they give is that my daughter] looks great to them, so we must have it all under control.

"They do not see all the work, the therapy visits, the doctor visits, the specialists, the research, the cost, the [evaluations], [Individualized Education Plan] meetings, the emotional drain it takes to produce this 'cute little girl.'"

Another mother, who asked not to be named, shares, "Sometimes I think they just really don’t care to know the truth, or they don’t hear me complaining, so they think everything must be fine and stop asking."

Dr. Amy Keefer is a clinical psychologist in the Center for Autism and Related Disorders at the Kennedy Krieger Institute, and works with families on the emotional aspects of autism.

"Family members often believe they are being supportive when they minimize parents’ concerns about their children," she explains. "However, parents often feel that their concerns have been discounted by their family members which can lead to feelings of isolation and even abandonment as they cope with the diagnosis."

Dr. Keefer offers tips for moving forward:

  • "Try a comment that does not put the other person on the defensive such as, 'I understand that you are trying to reassure me when you say that you do not see my child's difficulties. However, what I really need is someone to just listen to my concerns and feelings."
  • Invite key family members to therapy and evaluation appointments. "Sometimes hearing the diagnosis and the child's areas of difficulty from a professional can legitimatize the disorder," Dr. Keefer points out.
  • Understand that acceptance of this diagnosis often takes time. "Be willing to give family members time to process this information and cope with their own feelings about the diagnosis," she says.

Misunderstanding features of an ASD

"Sometimes the features of an Autism Spectrum Disorder (ASD) can be subtle and are difficult to recognize during brief interactions such as occasional family gatherings," Dr. Keefer points out. "[Those features] also often appear similar to difficulties attributed to other issues such as shyness, hyperactivity, social immaturity, temperament, and language difficulties. So it can be difficult for family members to recognize when an ASD is present."

Can friends replace family?

When family is more hurtful than helpful, friends may not necessarily take their place but certainly can help fill a void, especially friends who are going through similar parenting experiences.

"Friends of children with Ds are so important because they know that when I throw up my hands, curse and scream, 'uncle!' that it doesn't mean I want [or] need pity," Jenn shares. "They know it doesn't mean I don't love my kid just the way he is. They know I just need to scream to be able to go on."

When reassurances fall flat

"At least for me, [my] family people are always telling me it will get better [and] it will be OK,” Jenn explains. “[My family thinks] I need soothing. My Down syndrome 'family' hands me a glass of wine and says, '[Whatever you're going through] sucks.'"

Christi points out friends without a child with special needs can be just as supportive, too.

"My friends have become my family," she shares. "The friends who ask about her therapy, spend extra time with her and show a true interest in her."

Cammie shares her approach: "I have realized I cannot count on people all the time, but I can count on the Lord."

More about parenting a child with special needs

Please invite my child with disabilities to your child's party
Divorce: Does "Down syndrome advantage" exist?
Dos and don'ts of planning the future for a child with special needs

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Comments

Comments on "When families fail parents of children with special needs"

Maureen Wallace July 15, 2013 | 12:00 PM

Marie, I'm afraid you're interpreting your own perception of what those statements were intended to mean, when parents who received them had their own perceptions. One of the biggest points in the article, made by both quoted experts, is that parents of children with special needs should give their families a break and also work to educate them. That's a tough concept when, particularly as a new parent of a child with special needs, you're working so hard to educate yourself. I think in this circumstance, everyone needs to give EVERYONE a break. Your reading into those statements is as unfortunate as a parent taking a statement too sensitively. I hope you'll go back and read the whole article to better understand what parents go through. Thanks for sharing your opinion!

Marie July 14, 2013 | 8:32 PM

In response to Maureen; I agree, every child deserves the opportunity to be his best. You also need to consider that many family members say, with good intentions, things that they would never consider to be offensive to a parent of any child. The woman was saying, that it was wonderful that the DS child had accomplished a task. She clearly was happy for the child. She was not putting limits on him. And, you were insulted by the thought that someone suggested he could get a job as a janitor. The person suggesting he could be a janitor was not saying that is all he could do, but that is something he could do. Being a janitor is not just pushing dirt & taking out the trash. Housewives do that all the time. I think that the parents also need to think about being considerate of other family members. We are all different and not everyone expresses their selves in the same way. Family members are also grieving & trying their best to be supportive, and they also love the child and parents. Give them a break! They aren't perfect! Don't read more into things that aren't there. Beinging on the defensive just drives family members away.

Maureen Wallace July 14, 2013 | 11:18 AM

Marie, I'd love to talk with you further about your perspective. First, let me address your questions. When we as parents of children with special needs hear comments such as, "Oh, look! He's feeding himself!" the tone is often one of shock and amazement. Thus, the perception is that the family member or friend has already put limits, in their own mind, on what my child can do. I'd rather hear: "I love how he's feeding himself so well! Next up, drinking from a cup!" Regarding your question about janitors... no one who has a janitorial job should feel ashamed or embarrassed. People have different jobs for different reasons. But when someone looks at my child and sees his capability and skill level as limited to sweeping floors and emptying trash, I am beyond saddened. People with Down syndrome are running restaurants, creating beautiful pottery and helping run farms that deliver produce to communities. Our kids can do so much -- don't limit them as babies or toddlers when we have no idea what they will WANT to do, LIKE to do or LOVE doing! I sincerely hope this helps change your perspective that parents of children with special needs are "too sensitive." I will continue to fight for my child's right to have a productive, happy life just like any other parent. My son with special needs deserves the same shots as my child who is developing typically.

Marie July 14, 2013 | 11:05 AM

I don't understand what is wrong with the comment, "Oh,look! He can feed himself!He is doing just wonderfully!" The children do have DS which means they will do things slower and small tasks will be more difficult for them. Aren't you happy when any child learns to feed himself? What is wrong with being a janitor? A lot of people make a living by being a janitor and they don't have DS. Should they be ashamed of earning a respectable wage so that they can survive? I think the reason parents of DS feel isolated is because they are too sensitive. when a relative says something positive the parents turn it around to be negative. So, eventually people stay away because they feel like, if they say anything the parents will get hurt or angry, so they'll just stay away to avoid a problem.

J July 14, 2013 | 4:36 AM

Support for parents is as essential. It is very hard. A team of support workers with a variety of skills to share the stresses not only for the disabled person but their family. As a Teaching Assistant and registered disabled myself I can see it from both angles. A willingness from the disabled person to allow themself to be supported but an understanding from support workers to not over service but recognise every day is different and some days less or more support. As regards what he said/she said follow your instinct. Developing a SOH and thick skin is essential. See ability rather than disability. People feel a bit awkward around disability so cut them some slack. They are adjusting as well.

Sheri July 12, 2013 | 12:46 PM

When my daughter was born with Down syndrome was born in 2000, I told my sister first. My parents were afraid that at my age, that could happen. Then my sister told my parents. My parents called back with tears in their voice, asking how could they help! Daddy had a brother with Down syndrome. Way back then, they all went into institutions. My Grandma kept my Uncle at home, but life got too difficult. (It was more than my uncle, but a combination of circumstances.). When my Uncle was 2, he went into an institution. My parents were concerned about how I would love my daughter. My mother-in-law went to the Internet and found all sorts of supports for me. When I went to the library, found old books that should have been removed or burned! They were quite negative. I couldn't believe what I was reading! Later when my son was born with Down syndrome and ended up in the NICU for 2 1/2 weeks, the doctor we had there had this joke, "with Downs, everything is down." I didn't think he was funny at all. All he had seen were the NICU babies. I had my daughter at home and knew better. We had been down this road a bit and it wasn't so bad! Back to my sister. She is both family and friend! There are some things that she alone will understand. She also has children with disabilities. She has three on the autistic spectrum. You learn to row with it and find things to enjoy, where others can't see it. I'm very thankful for my sister! I also enjoy my support groups, where the parents know what my life is like! They know how to laugh at the flooded bathroom...., again..., because that's how it is sometimes! You give good comeback lines! You have to have those ready! Check out DisAbilityIsNatural for more attitude checking articles. That is NOT my site, but I have been challenged much by her articles. They are well written and ready to print out to share with others that need an adjustment to their thinking.

Maureen Wallace July 12, 2013 | 6:22 AM

ZeeZee, what a wonderful story you've shared with us! Thank you for doing that, and thank you to your unknown person who suggested autism may be the right diagnosis. It takes a village, doesn't it? Congratulations on all your successes and thank you again for sharing your inspirational story!

ZeeZee Jayson July 11, 2013 | 9:50 PM

As a child with ASD, I was able to work with Ms. Amy Keefer at one point prior to my diagnosis. I have been put down by most of my family, including my guardian, for many years. I barely remember a time when it did not happen, when they blamed it all on ADHD. I had the misfortune of being diagnosed much later on, at the age of 14. I was in high school before I was told what they thought I had. But KNOWING has made all the differences. I read up on it quite a bit back then, realizing... it was there all along. They were describing ME. How did no one notice, in nearly 15 years? Thanks to Kennedy Krieger, I was able to get my life on track and understand what made me different. I was able to find ways to help myself with my daily problems. And now, I am attending college, with few issues. I attribute all this to the fact that someone, somewhere, stood up and told my guardian, "Maybe she has autism." Thank you, unknown person. You have helped me in so many ways, through your act of speaking up.

Maureen Wallace July 11, 2013 | 6:56 PM

Leigh... thank you for sharing that equally heartwarming and heartbreaking perspective. What a great point, that family do tend to feel entitled to say what others might internalize. Ahhh, family!! Thank you so much for sharing your very personal story. So moving.

Leigh July 11, 2013 | 5:05 PM

You know? It's funny... My father-in-law's first response upon learning our daughter's diagnosis of DS (via email) was, "Now that the worst-case-scenario has been realized..." Luckily we were able to laugh at it at the time. A cousin once said, "My friend XYZ was shocked you kept it. When she found out, she got rid of it!" To which I replied, "I prefer that people refer to my daughter as ABC and not 'it.'" Yes - there have been some odd and hurtful remarks, yet interestingly almost all of them were from family members who felt that family status granted them more leeway to speak their minds. But I'll also say - I have had more strangers come up to me to tell me how beautiful they think my daughter is than my other two children combined.

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