It happens to most of us as we parent kids with disabilities, we hear statements like, “You are amazing, I could never do it.” “It must be so hard.”
Yes, it’s true, sometimes parenting kids with disabilities can be hard. We do have extra challenges that most parents of typical children don’t have to deal with, and our lives might look a little different than yours. But I hope you recognize that our lives look similar to yours too.
Can I be honest with you? Some of these comments – after a while – make me feel as if you think my child is not as lovable, and only certain people would be able to love my child or parent her. When you praise me for parenting my child, it says to me you feel fortunate she’s not your child because that would be hard and terrible and tragic. I know that’s not what you’re trying to communicate, I know that, but sometimes it does.
If I saw a friend with her typical child and I pointed at her kid and said, “I could never do it.” I think we would all agree it would be rude. That statement would say a lot about what I thought about her child, most likely not positive because I just said I could never do it. “What do you mean?” She’d probably ask offended. “I mean, it must be so hard to parent YOUR child!” Maybe right then she would have day dreams of punching me in the face. But I would not be surprised if she picked up her kid and walked away from me, offended, and reassuring her child he is loved, and wonderful, and she is lucky to be his mom.
It’s no different when I hear that. That’s how it makes me feel.
You see, the world tells us that disability is bad. When my youngest daughter was born with Down syndrome my midwife cried and the pediatrician shook his head and said he was sorry for giving us such bad news.
When we adopted our daughter who has cerebral palsy, a lady asked my husband, “Couldn’t you find a healthy one?”
Look back in history, we have not treated persons with disabilities as people. We have not treated them as equals. We still fight those messages and ideas today. Ask an adult with a disability how most of our society treats them, and think about how you would feel if you were judged based on your limitations. As the mother of two kids with disabilities, this pains me, because most people don’t know what I know, they don’t see what I see. They’re not part of our Friday night movie nights. Or our family vacations. They don’t see the pure joy of watching them dance and laugh and be kids. Disability is not a tragedy, what is tragic is how the world views disability.
I love my kids. And I’m not extraordinary for loving them, I’m their mom! How could I possibly not love them? How could I possibly not be their advocate, their teacher, their greatest supporter? You don’t think you could do it? Yes, yes you could do it! You would do it because you love your kids. And I am who you would be if your child had a disability. Having kids with disabilities is not reserved for the special few. It happens to me, to you, to my neighbor, and to the millionaire. Disability is part of life.
Comments that praise me for loving my child suggest that while everyone else got high speed wireless internet, I’m stuck with dial up. I mean that stinks, dial up of all things! “So sad you can’t enjoy the internet or participate in social media like the rest of us, I could never do it, I could never do dial up. I know what high speed wireless internet is like, it must be so hard to wait for the dial while everyone else is already on Facebook.”
My child is not the least desirable option, she’s not dial up, she’s a person. She has a unique personality, gifts, talents, ideas, likes and dislikes, a temper, a sense of humor, a big laugh, a tendency to melt my heart, and her arms wrap tight around my neck letting me know she loves me too.
Please, don’t hear me say I don’t want your support or encouragement, because I do. If you think I’m doing a good job, just say that, “Hey, you’re doing a great job.” If you think I look frazzled and you see my child is having some difficulties, I might be having a hard day, and if you really don’t know how I do it, chances are I might not know how to make it through the day either, so what about, “How are you doing?” Open the conversation, ask questions, let me know you care.
But please remember, I’m not amazing for loving my child, neither are you for loving yours. It’s what we do, we love our kids.
Look at your child, because you know no matter what happens, you will never stop loving your kids and you would do anything for them. If there was an accident and your child ended up disabled, you would care for them and love them just as fiercely as you do now.
I don’t feel I got the wrong end of the deal, I’m not stuck with dial up. I feel like the luckiest mom to call these kids my own. Please don’t praise me for loving my kids, they are lovable, they are mine.
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Thank you for putting into words what most of us feel. I have grown to hate the comment “God gives special children to special parent,” as if my child and my job as parenting a disabled child are vastly different and like I have been given a death sentence! I always want to respond, “Gee, thanks a lot for your confidence!” Well said!
Yes, not a fan of that comment either. Because WE know we are not special, and saying that puts a lot of expectations on us. I like to use the example of Down syndrome when I hear this particular comment, because most women who learn prenatally their child will have Down syndrome chose abortion, so, if we are so special then…yeah, I thought so, we are all imperfect and broken people. I don’t have more love, patience, or holiness than my next door neighbor. 🙂
I hate that on too. Since I ma’am atheist. The worst that’s too bad or I feel sorry for him and you. Makes me want to scream , he is a person just like you and me .
I choose to look at that comment in a good way. There are times when I feel like I can’t do it anymore. One too many hospital stays or simply just tired of fighting to give him his medicine. I then remember that statement and I think to myself, “God gave ME him for a reason. He knows I can do this so obviously I can!” ????
I agree my life is different because of my daughter in which I love deeply. We don’t have the life of a typical. Everyone’s different and we should deal with it the best we can. The way I see it if someone acknowledged and smiles at me because they notice my situation. It makes me feel better because at least someone notices and seems to care and I don’t feel so isolated. There are many days I need this.
Such a great read today! I completely agree with you!
We know family, friends and other people don’t mean any harm when they say those things, but it does leave a sour taste in my mouth. I praise you for writing this article and helping us feel relieved that we are not the only ones feeling this way. I have a 12 year old son with CP, and my family sometimes refer to his dissability as an illness; and although I know they don’t mean any harm, it bothers me! I dislike when they refer to him as being “sick”. I hope one day all people can understand the difference and just look at him and us as a family like any other family.
Yes, that is a big one. It reminds me of when people say “I don’t care if I have a boy or a girl for as long as my child is healthy” Healthy, I think, means without disability. But yes,disability is not an illness. My kids are not sick with Down syndrome or cerebral palsy. They are pretty healthy actually.
I don’t think there is anything wrong with hoping for a healthy child. I dont believe that there is a mother alive that found out she was pregnant and thought, “Oh I hope my baby has a disability!”. The reality is that disabilities bring unique challenges to parenthood. If your child has a disability, then you can cross that bridge when you get there…but there isn’t anything wrong with hoping for a child without disabilities. My first child had a neural tube defect called anencephaly. She lived for 3 hours and 55 glorious minutes. She was healthy. It was her defect that killed her. Was having her and losing her so quickly difficult? Absolutely! Do I think that I’m stronger than someone else because I was chosen to be her mother? Absolutely not! I’m so very thankful that she was mine. During my subsequent pregnancies, did I hope and pray that I was carrying a healthy baby without a disability? Absolutely , I did. Was that wrong? No. I don’t believe it was.
I don’t think your wrong to hope for a child without physical challenges. My son is autistic and born partially blind. I still look at heaven with a why me feeling. I do love him but I hate his problems. They conflict with my own defects (bipolar, psd and add). Having faith in God helps me put it all into perspective. I try not to be too thin skinned but I do appreciate an understanding comment or hand on my shoulder.
And even if you pray for a “healthy” baby and you are given one without disabilities, there’s no guarantee that she will stay that way. My first daughter was born without disabilities and was thriving in every way. And the at the age of four she was severely brain injured in a car accident. She went from an active, talkative preschooler to a child who could not walk, talk, think clearly or see correctly. And now at the age of 23 she is a dependent adult living in our home. She will always require extra care and someone to live with her. And this past November I gave birth to a son who had trisomy 13. He had a cleft lip, but other than that he looked big and healthy. Born 4 weeks early, he was already 7 pounds 1 ounce. Unfortunately because of a heart defect that could not be fixed (or at least that was what we were told, but I have since learned that trisomy babies are often discriminated against and life-saving surgeries are commonly withheld from them) he only lived 5 days. When I tell people about my son the most common comments that I get is, “Didn’t prenatal tests show he had that condition?” or “Oh…so you KNEW he had trisomy 13 before he was born?” because people are genuinely shocked that I continued the pregnancy once I found out in early prenatal testing — and I feel like shouting at them, “YES, I knew my son had a disability before he was born, and guess what? I wanted him anyway!” I knew that most trisomy 13 babies do not live long. I knew I might only have a few hours with him. But I still wanted him. He lived his life, as short as it was, to his best potential. And he got to meet me and all of his siblings and family. As his mother it was my job to nurture him for as long as I had him. And I did that. No regrets.
Amen!
I’m constantly disgusted at the immediate “sainthood” I’m granted when I’m told this. Well said!!
No saint here for sure!
I have 2 children with what are called disability, one already in Heaven. What makes me fuming (look at my ears!) is when people talk of tragedy! But i keep my cool and tell them that is no tragedy to have 2 wonderful children (besides my daughter) who just taught me to open up my heart and learn a lot of new skills. And to go through the day according to their schedule. No, no praises or admiration is needed. I love my life and i am sorry for the people who feel otherwise
You really hit the nail on the head. When I was pregnant with my second son, and we found out he had Down syndrome, a close friend of mine (who just had her first baby) said to me “it makes me realize how lucky I am” – she was reflecting on the fact that they didn’t have any issues throughout her pregnancy or with her perfectly ‘healthy’ baby. While I understood what she meant, that comment stung me – and I still think about it to this day. I’ve never felt ‘unlucky’. In fact, I feel quite lucky to have my little man with his extra chromosome. He has added nothing but joy to our family.
I think that is a pretty common statement as well. And again, it reflects the fact that so many people see disability as really bad and tragic.
Yesssss yesssss YESSSS !!!Exactly … “Wow You’re doing a great job with her , I don’t know how you do it , I don’t know what I would do , you got your hands full ” and the list goes on .. I can so relate to this article it’s like this mom read my mind. I had my hands full with my first child and 2nd as well and they are not special needs .. So don’t commend me on a job well done or tell me I got my hands full with this child !!! My heart is even more full ! This Article TOTALLY hits home for me brings tears to my eyes ! Thanks for sharing ! ✔️????
Saleesha, when people tell me, “You got your hands full.” My go to response is always, “Yes, full of love!”
People say that to me all the time too and I tell them just what you said…that yes they would be able to “do it” if their child was a special needs child because they would just “do it” without thinking about it. I once had someone tell me that I just needed to put my child in a “home” so I could have a life. Needless to say mad did not cover have I felt with that. What that person did not understand was that my life had just begun. Yes it changed and yes it has been hard and heart wrenching but at the same time it has been humbling and so heart filling. There is no way to explain the love you receive from a special needs child and how much your heart expands with just a smile. I always tell people I would not trade my special needs child for 10 “normal” kids.
I wonder if what some people really mean is ‘I would have had an abortion’ or ‘If it was me, I’d put my child up for adoption’. I can’t get my head around either but I know people do both of those things when they have, or are expecting, a disabled child.
I agree – my boy is my boy and although it has sometimes been very difficult, Prince is Prince and a valuable member of the human race. He is unique, and HE IS MADE IN THE IMAGE OF GOD.
Yes he is, he bears the image of God indeed 🙂
We hear this as foster & adoptive parents as well. It’s as if the luck (or destiny) of being born into a family that was not equipped financially and/or emotionally to care for them is their fault and makes them less “acceptable”. When they’re often the most caring (been there), compassionate & intuitive as children and adults.
That just breaks my heart. I hope one day my health allows me to be a fosterer or an adoptive parent to a child in need.
Yes. Thank you.
‘He’s so lucky’
No. Not at all. He’s getting the parenting he deserves. That’s all.
I’m the lucky one. I feel like I won the kid lottery.
Ellen, thank you for your honesty and vulnerability. Thank you for touching my heart and opening my eyes! ❤️ I’m sharing with my friends.
Thank you!
Thank you for your insightful and eloquent words! There is such power in bringing our thoughts and feelings out into the open so the sun can shine upon them and bless and educate us all in the process.
You make a very good point. The thing that bothers me most is that people, upon hearing that Wee Chum has cerebral palsy, usually look sad and say “I’m so sorry to hear that.” Well I’m not sorry about it. What use is there in being sorry about it? It’s happened now. The young man he is becoming, is not deficient or defective, he is 100% whole and perfect and unique like the rest of us are; he is not subhuman in some way because he happens to have a disability. For all I know, he wouldn’t BE Wee Chum without the cerebral palsy; he might not have the same determination (to the point of stubbornness), for example, he might not have the same sense of humour, he might not have the same ability with a football or love for judo, he might not have the same extraordinarily sociable and friendly nature with adults and children alike. We just can’t know the person he would have been had he not acquired cerebral palsy, and you know what? I don’t just love Chum because he is my son, I LIKE the person he is and the person he is becoming, and I wouldn’t change him for the world.
Yes! I love everything you said here. And like you I feel that my kids’ disabilities are closely connected with who they are, and I love who they are. And I get what you say about liking your son, yes, I LIKE my kids!
As a 60 year old woman with CP, I can confirm that. I can’t even imagine who I would be if I didn’t have CP, and the experiences I have had. In the 50s and 60s it was very different. I am so happy to hear so many parents these days accept and APPRECIATE their children with disabilities. My mother was emotionally abusive to me regarding my speech. It was confusing. I know she loved me, yet she did mimic me shouting this is how you sound, this is how you look!
Tamar, thank you so much for your comment. As parents, it is so important that we hear from you, the adults with disabilities. You bring up a very important thing for parents to keep in mind: what we say about our child’s disability will impact them greatly!
I really needed this today! Thank you so much for putting what I felt into words. And for letting me know that I am not alone with these thoughts. I am not strong, I cry, A LOT! Giving up is never an option, but some days I threaten it all day long! When people say “I could never do it”, I have finally got to the point where I ask them, “then what would you do?” Would you just drop your child off somewhere? Just say “oh this one is defective and will take more effort, so I don’t want her, after all, I can just have another, right?” And the “I am so sorry’s”… Nope! I am sorry for you and your inability to see something beautiful when it is right in front of you. I will pray for you! And the countless times I hear, if you ever need anything, just let me know! Ummm, apparently that is only ever said figuratively, because when you need that last minute sitter, they are never available, unless it is for your ‘other’ children only. My daughter is 8 and has CP. She is also tube fed and has epilepsy. Although every day may be a struggle to keep my sanity, she is worth it.
Dear Ellen,
I teach high school Child Development and a student of mine, with a special needs sister shared your blog with me. May I have your permission to print this article and share it with my class? I would like to engage them in a discussion on how we treat families with disabilities. I love your perspective and was chastised for my own attitudes at times as I view parents of special needs children. May you continue to boldly advocate for your children and to help others readjust our perspective. Thank you
Shari, where are you? Chances are we are not even close but if by chance I would love to come and speak to your class!
And yes you can share, but if you print it out please include a by line (by Ellen Stumbo) and a direct link to this post 🙂 Thanks for asking!
“Could you not find a healthy one?” REALLY? I have no idea how you didn’t at the very least yell at that miserable excuse for a human. What a disgusting thing to say.
You seem to get that we, disabled people, are in fact human, and deserve dignity. It’s depressing that that’s such a radical concept to some people. Keep doing what you’re doing, ma’am; you’re clearly doing it right. 🙂
This is why we need inclusive schools that reflect the natural diversity of our world — so that when kids grow up to be adults, they will have a different perspective of “disability”
Brought tears to my eyes. thank you for writing this. Both my sons are autistic and I’m sure you can believe how often a stranger or family apologizes or praises me for my job. Though I try not to get angry anymore, I smile and let them know full heartedly that it’s my job, these are my children, and I’d love them no matter who they are.
Very well written…I have felt like this but I do know people are just trying to be kind. I still don’t understand why we say “disability”. That word in itself sets people apart. We are all people, on our own journey. My child is no more harder than any other child. Just different. That’s all.
I have a son with autism, almost 28 y.o. I still hear comments like the ones you wrote about. He volunteers at our local hospital, at a soup kitchen, at the library, in a thrift shop, for Meals on Wheels. He is polite and respectful and helps me around the house. He is refreshingly honest and practical. I am so proud of all the successes he has had in his life. He has been my best teacher in life. So really, people should be telling HIM ” I don’t know how you do it with her” !!
When my son was 9, I mentioned to another mom that he has ADHD. The woman responded with pity in her voice, “I’m sorry that your son has ADHD.” I stood there stunned. I wanted to say, its not like he has cancer.
I think a lot of people don’t know what to say when they learn your child has a disability. My son has ASD. He is amazing and I feel so lucky to have him. I don’t like when people respond with “I’m so sorry”. Yes, we have our struggles but we have a lot more happy, fun moments.
Well done Ellen. I hate all that ‘I couldn’t do it’ business. Of course you could and you would- if it was your child. Mum’s are there to advocate and do whatever they can for their children. It doesn’t matter if they are ‘typical’ or not.
I am the Mum of an SPD/ dyslexic boy and another with hearing difficulties, and ten years ago lost my daughter due to a fatal neonatal disease at 3 months.
When anyone tells me, ‘oh I don’t know how you do it’, I do consider it at best unhelpful and at worse insulting. However I do like it when people tell me I do a good job and that my kids are lucky to have me. Its a subtle difference but a very important one- stepping from a position that is patronising and utterly unhelpful to the other which is supportive, loving and encouraging. Its hard being a parent, full stop. We all have different kids and different experiences.
Thanks again Ellen.
I don’t find myself thinking that way at all. I wouldn’t want them assigning meaning to what I say. Why would it be ok to assign meaning to what they say? People say things like that to me but the way they treat my little girl; I wouldn’t assume that they find her unloveable because of her disabilities. My husband passed away 3 months ago at age 44 and I am a widow with 3 little kids. I don’t find it offensive at all when people try to encourage me. They are being supportive in the only way that they probably know how. Unless you’ve asked for your child to have disabilities when they are born, the comments are to some degree right. When you walk up to someone and say…oh my child has _____ what do you want them to say?? Just because it’s your normal…doesn’t mean that it’s ok to make it theirs. Don’t be a victim..9 chances out of 10 the person who said it meant it as a compliment to you and not a diss at your child.
I agree! No parent wants their child to have a disability and if they could have the option of erasing the disability from their child, no one can tell me they wouldn’t do it! Just because one has gotten used to it doesn’t mean that deep down inside you wouldn’t wish things were different. I have a daughter who has disabilities and love her to death and would not trade her for anything or anyone but would I wish she wasn’t going through this, yes!
I can see that the remarks quoted here are tactless to say the least and hurtful. I have two children and am grateful they are healthy, I don’t judge whether your child is” normal”. I also had a brilliant uncle with Downs syndrome and would sometimes like to acknowledge that,, as parents , we understand your child is unique and wonderful ,with their own gifts, just as mine is, I would hate to have hurt your feelings. Sometimes it feels like this world has no tolerance of those with disabilities or conditions which mean they require additional support, I would like to let you know most people don t feel like that and show you support and solidarity as a parent.
I really enjoyed reading your article, I have a special needs child who will be 19 years old soon, and I wouldn’t change anything about the last 19 years, we have had ups and downs, but I have felt blessed every single day since he was born, he is my miracle. What does annoy me however is that a lot of times over the years I have heard “don’t worry I’m sure one day he’ll catch up” or when I sent him to a special needs school, “sending him to that school will give him problems”, that sort of attitude really gets me cross! Sending him to a special needs school was a big decision, but it was the best one for him and because of that decision he thrived at school, the teachers and pupils were and are all incredible people who have helped make my son who he is today an incredible human being who I am so proud to call my son, in my eyes he is perfect, he has a condition, he has difficulties, and challenges but I wouldn’t swap anything about him ever!
Beverly I agree with you, what works for some does not work for all. We push full inclusion so much, but for some kids, that is not where they will thrive.
Look back in history, we have not treated persons with disabilities as people. We have not treated them as equals. We still fight those messages and ideas today. Ask an adult with a disability how most of our society treats them, and think about how you would feel if you were judged based on your limitations. As the mother of two kids with disabilities, this pains me, because most people don’t know what I know, they don’t see what I see. They’re not part of our Friday night movie nights. Or our family vacations. They don’t see the pure joy of watching them dance and laugh and be kids. Disability is not a tragedy, what is tragic is how the world views disability. <——– THIS! As an adult with a disability and a mom of a child with a disability this paragraph is my life. I'm an amputee, not made of eggshells…. Every single day I have to face being treated just a bit differently. Most days it's subtle but it's still there.
Great perspective and I loved the comparison with the dial up/high speed internet. Perfect! You’ve honed in on a tough topic with a thoughtful response and I truly appreciate it. I work on not getting defensive in those situations, because I do, and I’m shocked at how often they keep happening. Thanks for sharing and well done!
This is a great article and I understand the feelings behind it. However, as someone who didn’t have a child with a disablity I have told my husband after seeing a disabled child that I didn’t think I would ever be able to handle that. I never meant it as an insult or for it to be taken the way you have. I meant I didn’t have the emotional strength to see and care for a child who faces so many difficulties everyday. I meant that I thought I would never be able to care for a human being with so many extra needs without losing my cool. That I would be stressed, heartbroken and sad for the pain they would experience. I meant it as a compliment, that those mothers and fathers are handling it with such grace and creativity that I did not feel capable of demonstrating in those set of circumstances. Not because there is something bad about their child but simply because of the struggle they witnessed everyday. The extra doctors appointments, the tests the special schooling. The emotional needs they had because of how other people viewed them. The sadness when they want to do something that other kids are doing but their body doesn’t allow them to do. I meant that would be too much…not that I couldn’t love my child. To the contrary I would love them very much, but it would hurt at times. Now of course I know that I can do it, and I will because my baby had a stroke and I see there is more joy then I ever thought there would be when he reaches a milestone or just smiles but as an outsider all I saw was the difficulties and always thought “I could never do that”.
Growing up disabled I have heard these comments plus more said right in front of me as if I can’t understand or I am not there. Let me tell you it hurts! Yes I wear a metal leg brace but your daughter has piercings and tattoos and has been arrested and was finally home from “rehab”, again. What if my Mom had said gee your amazing! I could never do what you do. your daughter is lucky to have you. I’d be a millionaire if I had a dollar for every time a person would lean down to me and seriously say to my young innocent face your so lucky to have a Mamma like her to raise you. All I heard was “the way you are, I wouldn’t, and no one else would want you as their daughter”. How does anyone but especially a child deal with that? Those comments are not compliments or encouragements! So no you didn’t say the right thing and you didn’t make us feel better. You just made yourself feel better because you look at me and think “thank you god for not making her my daughter”. A lady in church once told me she wished she had a manual so she knew how to talk to me. Then she smiled and chuckled probably because she saw the hurt in my eyes. I was stunned, stared at her then turned and walked away because I didn’t have a manual to know how to talk to people like her. Yes that is what I would do while growing up, turn and walk away because I didn’t have a manual….
Janice, thanks so much for leaving a comment. And she said she needed a manual? Wow, what about she talked to you like a person!
So, I get your main point, but honestly, I’m bothered about the way you get there.
What really gets me is that You say that you understand people aren’t trying to offend you …sooo … wouldn’t the simplest solution be: to choose not to be offended? The whole crux of how people of faith are to act toward each other is to set aside your “rights” (in this case the right to be offended) for the sake of others. People aren’t generally going to give you a second shot at being vulnerable around you once you respond negatively to them the first time. So, instead of choosing to be offended, why not choose to believe the best about that person and substitute the perceived offense for truth? Believe it or not, being offended is actually a choice, and it’s up to you. Maybe, Instead of lambasting well-intentioned people, write an article with positive grace-filled overtones and a teaching spirit, instead of a spirit of sarcasm and snarky, passive-aggressive style (like this essay-of-a-comment is shaping up to be).
Just the other day, my amazing wife showed up to church in the evening after a day of important business meetings, and a staff member made a comment about her outfit that was intended to uplift, but was worded in a horrible way. Instead of ripping this staff member, she defended her by extending grace in believing the truth about her attempts at being vulnerable.
Look, I understand you are writing on an Internet blog, and the way to get clicks is to fall into the link bait trap, to say things in a way that will get people’s attention. But if you really want to actually help people to improve, try writing with a gentle spirit, instead of looking down your nose at kind – if admittedly misguided – attempts at compassion.
After reading your article and the grace-less comments from other parents in similar situations who all seem ready with pitch forks and torches to follow your lead, my take away is probably very different that you hoped for. I now am gun shy about how any attempts at vulnerability and authenticity will be turned into an excuse to be mocked, that I’ll probably just avoid any conversation with other parents who have children with disabilities about their realities – lest I offend someone who will whine and moan about me to others but won’t offer loving reproach.
I agree with you that we need to extend grace, forgiveness, and let go. Actually, I do write about that, because holding on to hurt and resentment ultimately only hurts us.
Yes, grace and forgiveness should be guiding in our lives, but, I find it puzzling when people respond, “I hurt you, and now it is your job to forgive me and extend me grace because that is the right thing to do,” rather than responding with an, “I hurt you, I am sorry.” It is sad to me that the secular world is more loving and inclusive of persons with disabilities than those of us within the church. As a Christian, I believe it hurts the heart of God when we diminish the pain of the vulnerable: our kids and adults with disabilities.
I will guess you do not follow me on Facebook, but this is what I wrote when I published this post, “I hesitated with this post because I don’t want to sound angry, but I know this is an issue that many of us who parent kids with disabilities face.”
Chris I hear you, so in that same spirit I hope that you can hear me, and the people who commented here. As I mentioned at the beginning of the post, this is not a response to a one time incident, this happens over and over and over and over. And from the adults with disabilities who commented here, you can see that these comments were also said in front of them as kids, and those comments did communicate that there was something wrong with them.
Actually, most of us don’t say anything negative when we hear these comments. Really, we don’t. We smile and say things like, “Sure you could do it,” or “thanks.” This post is not about what we say, but it is about how some of us feel when this plays time and time again. We know these comments eventually make our kids wonder if there is something wrong with them. I think you will agree that comments that make children feel inferior are best not said, even if the comments are referenced towards their parents.
You mentioned your wife’s reaction to the comment at church, and how she was gracious knowing the person did not mean it. I will guess this was a one time incident, how do you think she would react or feel if this happened to her every day?
I wonder if you have any friends who have kids with disabilities, your friends will be your best guide. If you do not, I assure you there are many families impacted by disability around you. If this post makes you not want to approach them, I would actually ask why you have not approached them even before you read this post. Staying away from families impacted by disability is not a reflection of us. I want to be fair here, because I understand that it can be intimidating to approach someone who is different, but this post is not the reason why someone will stay away.
Any attempts you have at real authenticity will never be met with reproach. You know why? Because we appreciate realness more than anything. We are part of a beautiful, vulnerable community, and we seek authentic friendships the same way I would guess you do.
Chris – we are not talking about trivial comments made about an outfit or someone’s appearance on a given day. We are talking about hurtful comments made to our children – or in front of our children about them- comments that are deeply hurtful and damaging and convey a message of being unworthy or damaged or not enough. My son with Down Syndrome is worthy of love and respect and acceptance. He is more than enough! He is our greatest blessing and blesses everyone who takes the time to get to know him! But we also encounter frequent hurtful comments and actions from others. You need to understand that ignoring hurtful comments said to or about our children is even more damaging to them. Silence is passive agreement. With love and tact, I correct others when they make harmful and uneducated comments in front of my son. That way my son, who is completely aware of what is going on and upset, understands right then and there that there is no truth to others foolish, insensitive, and uneducated words. As Ellen said, if this was only an occasional occurrence, it could be easily brushed off. But after this happens repeatedly, you realize that another response is needed. Step into our world, really step into it and you will be blessed beyond belief. But your vision will undoubtedly improve as well. It makes me think of the lyrics to Brandon Heath’s song ” give me your eyes: give me your eyes for just one second, give me your eyes so I can see, every thing that I keep missing, give me your love for humanity, give me your arms for the brokenhearted the ones that are far beyond my reach, give me your heart for the ones forgotten give me your eyes so I can see!” May you have the grace and courage to really see.
I agree Chris… people mean well when they say those things, so If I know well why take offense? I have a special needs child and I can’t get offended at these things unless someone is being just cruel but these comments that people say are not cruel. Nowadays, people get offended for anything.
I’m a mother of 2 young children without any disabilities and I will admit to admiring some mothers of children with disabilities. I’ve never vocalized this admiration, but as I sit here typing this I’m trying to pin point where this admiration comes from. It’s definitely not because I don’t think your children are loveable. I think it’s because as a mother of 2 I’m constantly exhausted, emotionally drained, and often struggling with everyday tasks that make up a home. When I see you parent your child with such grace and humility, I feel a twinge of guilt for feeling overwhelmed at my child for coloring on the wall, or spilling her juice. All while you deal with an extra set of challenges and do it so eloquently. If either of my babies were born with these extra challenges, of course I would love them, of course I would do my best… But I would most likely still compare myself to you. I often do the same with mothers who run successful businesses and manage to take their children to 10 different extracurricular activities a week…”How do you do it?!” If I say this to you, dear parent of a special needs child, please forgive me. It’s not because I feel that beautiful child is not worth loving. It’s because when I see your strength after your baby has gone through their umpteenth surgery, or the endless doctor and specialist appointments, I can’t help but feel inspired and admiration. Acknowledge the hardships of being a parent; the unique challenges that face us all, and try to accept the admiration I give you as just one mother in awe of your strength. If I were ever to become the mother of a special needs child, that strength would be my guiding light even if you didn’t know it.
Well said MissMay
So beautiful and touching and gently worded. Thank you, Ellen.
This has unnerved me, too. While I understand that these types of comments are almost always intended to be complimentary or encouraging, their impact becomes tiresome, at the best of times, and downright painful and/or anger-inducing, at others. The problem, obviously, is that they cut right to the core of my deepest love, in a way that brings out all my mama-bear claws. Which then, spit-second-ish, have to be restrained, as the commenter has no idea they’ve said something hurtful.
Another issue that no one has mentioned, so far (so maybe it’s just me), is that, by comparison, these comments also highlight my deepest insecurities. (What if I’m NOT, in fact, doing that great a job and I’m miserably failing my beloved child? EEEEEEEEEK!!!!) It’s one thing to KNOW I’m doing my best and that she is in a loving, caring environment with everything we can give her, but insecurities are not typically rational and they just bubble along, under the surface, unnoticed, until someone says something like this and I have to prayerfully beat them back down. Lather, rinse, repeat.
ANYway, thank you, again, Ellen. This was a wonderful post!
I have to disagree, my friends love my 28yr old daughter. They tell me all the time that I am a amzing person but my reply is “I’m just a dad” I appreciate that they think I am a good person. They openly admit because they have the ability to do whatever the want and just drop the kid at grandmas or the neighbors house that they would have trouble with having a child like mine but I remind them they would do the same thing as me because it is your child. They were just not meant to do it but I am. Sure people tend to stay off to the side or don’t know how to act around Jessie but for the most part alot of them treat her and I just like anybody else and they love her. Allow praise for yourself, it’s a tough job at times . Wouldn’t you want your boss to praise you for doing your job great? Sometimes it’s that praise that keeps me going. When my daughter has had a bad day and she has to go to her room for a while I feel all the guilt in the world for it and think she doesn’t undersatnd everything and I am a bad father but then someone tells me that it’s not a bad thing and you are doing what’s best for her and your doing a great job makes me feel better. Learn to take the praise and just say thank you. I raised my daughter in the age of no internet no support system and in this “I get offended” age you need to step back and say yeah I am amazing. It has nothing to do with being praised for loving your child but has evrything to do with be praised for being the amazing person you are and for everything you do . Just stop being offended by it and embrace it.
When I was a little girl, I told my stepmom that her son was so lucky to have a mom like her. His father had abandoned him, and he was a non verbal autistic boy with many many health complications. I thought he was so lucky because so many parents do not put in the time for love and patience whether their children are disabled or not. He had so many more needs than I did, and his mother was willing to do her best to meet them. Not all parents will do that. Praising you for parenting is something that happens when you are a good parent, disabilities or not. Those who offer it may not mean, “It would be so hard to love a child with down syndrome. (Or some other syndrome)” They might mean, “You are doing a fantastic job meeting your child’s needs, and you are wonderful, good job.” My stepmother’s response to me when I gave her similar praise? “I think I am the lucky one.” I learned a lot from those words.
We all think things that are best not said out loud. You are so right about people saying things they would never say to a parent with typical kids. Like when people say “oh it must be so hard…I could never do it” I sometimes smile and think …”yea well I don’t know how you do it cause your child/grandchild is a nightmare!”
But at the sametime while saying how hard it is people are also so judgmental of parents of children with special needs. They think you aren’t supposed to discipline them. I tell them it may be ok by you for her to act like that while she’s young but how cute will it be when she’s a grown woman?
When my daughter was in school parents would say mean things about me because I made my daughter behave. One day I had enough and turned to the group of parents and said “seriously have you ever read Hellen Keller?!?” The look on their faces was priceless! LOL
Julie I agree, the standards for some of our kids are not the same, and kids are so good at picking that up right away. My daughter knows what the expectations are, if she realizes she does not have to listen, then why would she? Then mom walks into the room or situation and suddenly she knows, she better start behaving. 🙂
Ellen, thank you, for helping us better understand! Most people have some sort of disability, perhaps not as apparent as others.
I really want to hug you right now .. wow its as though you read my mind. My son was diagnosed with left hemiplegia due to a stroke while I was still pregnanr. We had no idea till he was 5 months old and was diagnosed. It was obviously an extremely huge blow to us … however instead of feeling sorry for him or us, we chose to fight the battle with him … yes we did (and still do) have bad days where I cry and think that Im too tired to do this, but i remind myself what a great kid I have … he is nearly 1 now and still doesnt sit … but he is my perfect little boy. Ppl keep telling us how strong we are and how they wouldnt handle it as good as we did … but as said What should I do? there is no option … you either fight the battle or let the battle win you over. It would be so much better for ppl to learn what to say or do if they really want to help. loads of ppl tell us to let them know if we need anything … but it would be so much better if they offered to cook us dinner or help with house work … offer to come over and play with my child while I can have a cup of hot coffee … well you get it. But please … do not tell me you’re sorry, for I feel like the luckiest mum in d world 🙂
Perfectly said! I have 2 children with CP, the youngest with a host of other medical issues as well and I hear these words ALL THE TIME! I also hear, “You are SuperMom & Wonder Woman.”
My response always is, “I’m not a SuperMom or Wonder Woman, I Am A Mom! I do what moms do, love and take care of their children!” Do I get frustrated, absolutely but when I hear my kids tell me, “I love you mommy, thank you for being my mom” what better reward or words are there. <3
Thank you for your insight. I feel exactly how you feel daily! Beautiful is in the perspective and our society has lost the perspective is what is and can be beautiful! Thank you!
Thank you! This is what I want to tell people all the time. Our adopted son has FASD and SPD and we’re in the process of testing for ASD. People test me like I’m a hero and I’m not… I just see a child who needs to be loved and given a chance in the world.
I can understand where you are coming from completely but I think we as parents of special children need to be really careful about allowing ourselves to read to deeply or think to deeply about the statements made to us about our children. It has gotten to the point where I just don’t say anything to fellow parents with special kids because I am so worried about saying the wrong thing and upsetting or offending them. We need to take the comments in the way they were intended by the speaker as words of encouragement not become known as nitpickers. Just my two cents! I hope I didn’t offend anyone with this comment. 🙂
My niece is autistic and is one of the sweetest kids I know. It’s easy to love her! Sometimes it’s hard to take care of her. But it’s easy to love her. She’s a 10 year old girl who happens to have autism. It does not define who she is.
I have fibromyalgia and chronic fatigue. My life can be difficult. But I still enjoy many things and spend veryour little time feeling unhappy. We are not defined by our “disabilities ” unless we choose to be. And I refuse to be.
I just wrote something along these lines… and I soo get tired of the question, “how do you do it?” It DOES feel like, “how can you love that child and sacrifice everything?” Parenting is hard. Period!
I so connect with everything you write! Thanks so much for putting the words and thoughts out there!!!
I feel like society at large has no idea what to say when it comes to disability. I was in an extremely horrible car accident in January and now have a brain injury (and CP because of the brain injury. Did you even know it’s not necessarily something you have because of events in utero, at birth, or right after birth? I sure didn’t until now.) and the amount of people who say things that make you think “did you REALLY just say that?” are unbelievable.
Rachel, I did not know that actually, I always thought CP was something that happened at birth or shortly after.
So did I. It’s very rare for someone to get it like I did. Spastic hemiplegia and ataxia. The crazy thing is that I can feel the high tone on the side it effects, somebody born with it might not because that’s how their body has always felt
My son’s hemiplegia/CP was caused by an accident which resulted in moderate to severe brain injury when he was ten weeks old. It definitely happens but as you say, it is rare. I’m a member of a Facebook group for people and parents of people with hemiplegia, and I’ve not yet met someone whose condition was not caused by stroke either in utero or at (or shortly after) birth.
I’ve found another! lol. Nice to meet you. If you ever want to talk I would love to. And I would love to join that Facebook group, if you could add me, please? My blog has a link to my facebook profile… I think that way might be the easiest. furiousblanketfort.blogspot.ca