With all of the things Gina is dealing with right now, I am more than happy to guest post on Special Happens so that she can focus on her family’s needs and not worry that her readers will feel neglected. However, I am a little self-conscious writing here since I don’t have a child with special needs (at least not until our school district recognizes drama queen as a reason for an IEP).
All kidding aside, I am not a special needs expert by any means, so rather than try to write about something I don’t know about, I thought I’d stick with what I do know.
I am an expert in….. Um, hmmm, let’s see…
Ok, let’s skip that idea. How about we go on to the things I don’t know that you do know. I have questions related to the special needs community and I hope you can help me (and other parents) with the answers:
Questions
There are a myriad of questions I could ask – many of which I am afraid may be offensive. I am already afraid of the reaction to even putting these out there – but I’m going to put everything on the table and hope you understand my intention is to understand, not to offend. I think these are relatively common questions and hope to spark a discussion – realizing that there is no one size fits all answer.
Is it OK for me to talk about my kids to parents of children with special needs?
I have been blessed with 3 very healthy, athletic, socially adept (ish) kids. I worry that talking about them and their successes is akin to bragging. I hesitate to talk about how academically successful my kids are, how many goals they scored, or how many friends they have. Does me talking about my kids feel like salt in a wound? Is it like saying that I got pregnant any time my husband even looked at me when I’m at an infertility conference?
How do I express sympathy?
“I’m so sorry.”
When I say “I’m sorry.” does it stop at I’m sorry for whatever it is at the moment – or does it expand into I’m sorry your child has to deal with this. Because let’s be honest, as parents if we could give our children every physical and intellectual advantage we probably would. We don’t want them to suffer through ostracism. We don’t want them to feel sick or watch their bodies deteriorate. We don’t want them to have to work 5 times harder than everyone else to accomplish the same things. We especially don’t want to watch our kids in the throes of a seizure, scared every day because their senses are over stimulated by the everyday things around them. But is “I’m sorry” patronizing? What should I say instead?
Is acknowledging someone is different good or bad?
If I hold the door open for a kid in a wheel chair – does it make them feel different than others – like I pity them? Or should I ignore them so they feel they blend in? Or does ignoring them feel like I can’t even stand to look at them?
We were at a school carnival the other day and there was a little person there – he’s in 4th grade at that school, but my kids go to a different school and hadn’t seen him before. My 7 year old was fascinated and kept staring at the boy. I told him to quit staring – yes he’s a little person – get over it. What am I teaching him? Will he learn to let his eyes skip over someone with physical characteristics that set them apart from others? Whether it’s a missing limb, a wheel chair, down’s syndrome, little person, whatever. My intention is to teach him not to embarrass the other person, but ultimately what he’s learning is to not look at them.
If no one looks at a child with special needs I can imagine they’d wonder why no one looks them in the eye. Wouldn’t that be nearly as damaging as how come everyone is staring at me?
My son would have loved to go up to the boy that was a little person and asked him all sorts of stuff – how tall are you? Are your parents tall or small? Can you ride a bike? Will you always be short? What grade are you in? And then they would probably have gone off to play somewhere and my son wouldn’t even notice the boy’s unique stature any more.
But how do we get that initial curiosity out of the way without offending? How do we meet someone that’s different and not be overly bubbly to mask our discomfort? How do we as adults and as parents teach our children that line of being respectful without causing shame or embarrassment?
I believe people’s intentions are good 95% of the time, so if they offend, it likely is due to ignorance like mine. Would you help me understand better?
Have you dealt with any of these questions? How did it feel to you? What would you like to see people do instead? Is there a question I didn’t ask that is your pet peeve?
Daria is a working mom of 3 in Colorado. She blogs about finding balance between work and home at Mom in Management and about saving money and building wealth on Saving to be Rich. You can also follow her on twitter ~ MominManagement.
I don’t mind the questions, if asked directly to me, and not voiced aloud, in a group. What I mind are the pitying comments. “Oh, it’s such a sad thing” – said by a member of my writing group, or “better you than me” – said by all kinds of people.
It’s NOT sad and yeah, it has its challenges, but we don’t need pity. A little more silent compassion would go a long way.
Say “hi” to my son, like you would any child – don’t talk around him to ask ME how he is. Smile. Make small talk. Treat him like he’s an actual human, not a sideshow freak.
I second this:
>It’s NOT sad and yeah, it has its challenges, but we don’t need pity. A little more silent compassion would go a long way.
[...] please tell a friend!My friend Gina has a fantastic blog about children with special needs called Special Happens. She writes about the struggles and joys of being a mom to a son with special [...]
Thank you! I can tell from your response that how others have reacted has been a painful experience at times. If you don’t mind sharing, could you expand on how to be compassionate without it coming across as pity?
I know I personally struggle with this. I don’t want it to seem like I pity you – because I don’t. Everyone’s family is their family. Good, bad, ugly – they are yours and what makes it difficult at times is also what makes them who they are and has also shaped who we are a parents. I get that.
But it also scares me – because I barely feel like I hold it together as a parent most days and my challenges don’t feel 1/2 as intense as the ones Gina or others are dealing with… I put myself in your shoes (obviously I can’t understand exactly, but I try) and I think I would crumble – yet I see Gina so strong and dealing with all the medical procedures and insurance and stress and coming through it all with a huge smile and a back bone of steel. I want to be able to acknowledge how strong she is and how amazing without it being pity. Does that make any sense at all?
Well, teach your kids to try to include them in their play. Teach them that different is wonderful, not something to be avoided or feared. When you see a mom or dad with a kid melting down in a store, explain to your kids that there is just too much for the child to process and they just need some space. Please tell me how your child is doing in school and such. I may get a sad wistful look in my eye, but I want you to be my friend. I don’t want pity. Celebrate even the tiniest seemingly insignificant accomplishe,net, like making it through the day without putting dirt in their mouths. Don’t underscore your struggles either. Like you say every family has the good the bad and the ugly. Rear us like any other parent, treat our kids like kids, and just be fully present in our lives. Yes, we are strong, but we were chosen for this task, as you were chosen for your love able band of “normals”.
What a wonderful post. I think you have asked questions that all of us with children who don’t have special needs would love to know. How thought provoking and kind that you would put this in writing. Thank you.
I think so many times there is that line drawn in the sand. I know, lol cause I used to draw it. It took me a long time to be able to be around other kids my sons age only because the delay was so hard to see. The difference with me is that while I have SN kids I also have NT kids, drawing the line was making them suffer as well.
I think its hard for parents who haven’t been there to understand where I stand BUT if I don’t ever tell them how would they ever know. I think sometimes too we parents take the defensive when others say things…but your right, its hard to know what to say. You may be wanting to reach out but how do you even start?
I think you handled your questions very well! Other people aren’t so nice, and we as parents aren’t always so lucky to know people like you Daria!
Thanks Lisa! That’s exactly it. I want to reach out – to empathize, but not to pity. It can be a fine line at times and this topic is so darn sensitive because we all love our kids and feel protective. It’s hard.
I have learned a ton these past few years from many of my friends that have special needs children.
Your questions are ones I never wanted to ask and now have a place to see some answers. I look forward to more people responding and letting me in on those “uncomfortable” questions that I never could figure out how to form.
Thanks!
I’m so glad you asked these questions, Daria, and the answer from June has already helped me to better navigate social situations with moms and kids dealing with special needs.
I have the-same-but-different going on in my family. As an adoptive family, we, too deal with unasked questions, murmurs, awkward comments and, sometimes, pity.
I like the idea of silent compassion. What does that look like (or sound like)?
Thanks Lori, I can imagine that adoption could pose a similar situation of uncertainty about what is ok to say or not say. I know I asked an adoptive mom once if her boys were brothers (both were from Guatemala). She responded that of course they are brothers – they are both our sons.
Insert foot in mouth!
I meant biologically related of course and it turns out the boys were bio brothers too – but I clearly didn’t ask it correctly and it wasn’t any of my business any way.
Great questions Daria. There are no easy answers but the fact that you are asking and posting about a topic that you don’t have direct “expertise” in is a commendable step.
I believe honesty is the best policy when dealing with issues of diversity. Age and developmental level appropriate, of course.
I can’t say enough about the importance of educating children, staff, and parents about the children with special needs in the school system. This is kids’ second home, after all.
I was sick inside when I rec’d an email from my son’s teacher that he and some boys where picking on a student with special needs during recess. Let’s just say that Jr. learned a hard and fast rule about respecting others and under no circumstances was it right to make fun of anyone EVER.
Hmm–I don’t know that I’d express sympathy to a parent of a child with special needs. I usually ask what is the appropriate thing to ask/say/do and then take their lead. Compassion and respect are invaluable IMO.
Great post for an underserved and misunderstood population–Bravo!
Thanks Linda for sharing about your son. I know I am embarrassed every time I hear my kids didn’t behave like perfect angels at school. I not only want to teach them to not pick on others but to intentionally support other kids that may be at a disadvantage – reach out and include rather than exclude. But I can’t say that I’ve been successful. My daughter has her best friend of the day (or hour) and focuses only on monopolizing that one person’s attention. I really wish I saw more group and inclusive behaviors, but I haven’t. Any suggestions on how to foster those?
This is a great post, especially for those of us who sometimes aren’t sure how to react. Silent compassion vs. pity is definitely a much better approach. Thanks for bringing attention to this!
Daria – Thank you for this post. I have felt like this myself many times. I have 2 healthy children and a few friends with children with special needs. I want to be supportive and understanding but not inflict pity on anyone. I am in awe of what they deal with on a daily basis while I complain about having to make dinner after working all day. It is hard to know exactly how to respond where the message you are truly trying to relay comes out right.
SO glad to know I’m not alone with this Susan!
Thanks Amber! I guess the lesson I’m learning here is just be quiet!
Hard, hard questions.
I have 3 boys on the autism spectrum. Two are very mild, the third is more affected by the autism and has Down Syndrome as well. We also have a daughter, who seems typical. It amazes me the difference between how people behave towards my daughter and my sons. Now, the one with Down Syndrome gets an automatic smile from a lot of people, but that smile disappears when it becomes obvious that he’s not your supposedly-typical sweet, social kid with DS. He’s autistic, so we don’t see that.
My older two boys will look pretty normal, until the “behaviors” start. Then they begin looking like a couple of cretins. I can’t tell you how many times I’ve heard “if that were my kid, he’d never get away with that!”.
The thing of it is, unlike most moms, I’ve had to do a lot of work to learn how to parent my kids. Visual schedules, PECS for my non-verbal kid, positive reinforcers. I feel like a therapist more than a mom some days. So when I’m doing my best to cope with my kid’s admittedly-awful coping strategy (ie, misbehaving), I sure don’t need the comments or stares. I’m already feeling awful, for letting things get to this point, pushing them to go to the party or run one more errand. I am embarrassed. Part of me, in that moment, wishes things were different.
As far as your questions, well, it’s fine to brag about your kids’ accomplishments. We might feel sad but I think most of us know that feeling of pride and will relate.
“I’m sorry” is gonna depend on the situation. Someone said it to me after my third son was born, and it was what I needed right then. She’d been playing with him and enjoying him and it was more of an “I’m sorry about all the worry that comes with his special needs” not an “I’m sorry your child is who he is”.
Do NOT say “why’d you have more?”, which someone once said to me. It might be best to focus on the positives “she has a beautiful smile” or “he seems to be doing really well”.
I never mind if a child asks me questions about my kids. It gives me a chance to explain, and there’s a chance that this child will befriend my child. I also don’t mind when a parent answers their child’s questions, tactfully.
Thank you Mary. This was very helpful. I know that until I got online and met Gina and some other parents of special needs kids I was unaware that some of the “bad” behavior of kids could be due to a diagnosis. “Typical” looking kids acting like cretins would have just registered as kids being cretins rather than perhaps something deeper. I know my kids have certainly had their share of temper tantrums in public (and home) and I was just ignorant of the other possibilities.
I think this is fabulous and I can relate too, Daria. My first instinct is, no one can fault you if your intentions are golden as I’m sure they are.
I’ve told my daughters from the start, if they have a question about someone – get up the nerve and go ask them. Either they go ask, or they leave move on. I have a pretty bad scar on my leg and I always notice people staring at it – very few actually ask what happened. I don’t mind if people ask, and I’m sure parent’s with special needs don’t mind that innocent question either. (But I could be completely wrong on this)
Wonderful handling of difficult questions Daria!
I think the best point is your belief that “people’s intentions are good 95% percent of the time”. Amen! Shouldn’t that be enough? I think some times we are so focused on what we have been “told” to say in these situations by political correctness, that we miss the very human side of it – expressing our empathy and curiosity.
Thank you for taking the time to bring that empathy and curiosity to a difficult discussion.
As a mother of disabled children the only things I find offensive are people saying sorry. I wouldn’t say it’s offensive just more annoying. There is nothing to be sorry for my daughter is as perfect as she is meant to be.
Children are natural curious so it doesn’t bother me when they point out things. I explain it to them and hope that child goes on to have acceptance as an adult. I do not like when adults say things like OMG what’s wrong with her eyes, or ask stupid questions. If they are straight forward and really are interested in knowing more I take the time to explain.
And please do talk to your children about people with special needs. It teaches children to be accepting and understanding. I think all children need to be taught that not all people are the same or can do things in the same way, but they feel, love, laugh, and cry just like everyone else.
Thank you Stephanie! I think after this discussion, I am going to adopt more of Jenny’s approach and encourage my kids to go ask. Kids are curious – it seems like everyone accepts that and is ok with it. I am so glad to have gotten this feedback when my kids are still young enough that I can change how I’m handling it from “don’t look” to – “go ask them if you have questions”.
I have a son with a ton of learning disabilites. His mind works differently, he learns differently. The worst is the “sympathetic” parent that likes to inform EVERYONE of this fact…I’m not sure what’s they are trying to accomplish by this, but it’s usually inappropriate and not relevant. There’s also a ton of parents in the school that look at any child with an IEP as “stupid” (it’s horrible but true). They don’t want their children in the classroom with “those kids” because the teachers will probably “teach down” to them. They learn differently, not “not learn at all”! The best was when one asked the teacher at a LEGO class if “they taught kids like him?” His mind works differently, he can still build with LEGOS! Probably more creatively than most. The thing I respect most is a parent that asks questions to be educated about my sons LD’s to have a better understanding.
My thoughts on your questions…
1. Of course! I like to support my friends and their kids just like I would like mine to support me and my child.
2.No one probably needs sympathy. I doubt any one of the parents are feeling sorry for themselves. They’re strong advocates of their children and would rather have support than sympathy.
3. Just treat them with common courtesy and respect. Would you hold a door open for a mother struggling with a stroller? Would you hold a door open for an older lady with a cane? Why not a wheelchair? To me that’s manners…and any one of these people will let you know if they don’t need help. I live in NYC so we see lots of different kind people. I’ve always said the same thing to my son (who is now 8), ” People come in all shapes and sizes, but they all have feelings. How would it make you feel if someone was staring at you? If you’re curious about someones difference ask me later about it.” We also talk a lot about what makes a person different and why it’s good to not all be the same. I just educate him in an age appropriate way.
Hope my thoughts help!
Thanks so much! I will use this line for sure!
People come in all shapes and sizes, but they all have feelings.
That’s a really great way to explain it to them and a good filter for making decisions on how to behave – questions to ask or not ask, staring, etc.
Hi Daria, I so recognize your questions. I wanted to ask them myself so many times. Good for you, and I am sure that everybody, special need or not, wants us to have a real connection.
Thank you so much for a great post!
It’s interesting to see how a parent of non special needs thinks so I respect so much your thoughtfulness in your questions.
Plainly put for me:
If you are my friend I want to know everything about your joys With your kids. We are both moms and let’s share and celebrate successes.
If you would hold the door open for any adult or child I’d want it held open for my child in a wheel chair. It’s polite and I’d do it for you or your children. We are all created equal.
I do not want you to apologize or say you are sorry for my 2 special needs kids. They are amazing people and gifts and saying sorry makes me feel as if they are second class or something I should feel bad about I don’t. It’s a little passifying.
Don’t even get me started on all the things you don’t say to people that struggled or are struggling with infertility lol. It’s a pain that never leaves you even after you have children.
Thanks for asking and wonderful post xoxo
Thanks Y’vonne! I meant about the “Sorry” comment, more when I hear how things are going for Gina with the hospital and J’s brain activity. I didn’t mean expressing sympathy when I just initially find out someone has a child with special needs…I don’t think (I hope) I’ve never said something that came across like that! Although I do put my foot in my mouth quite often, so it’s always a possibility.
“Is it ok for me to talk about my kids?”
Of course. You have kids, you talk about them. Every parent does this. It would be weird if you didn’t. There’s a fine line between being proud and bragging, of course. But if it wouldn’t come across as bragging to a parent of typical kids, you should assume it will be taken as the normal parental pride we all have. And yes, we’re all proud of our kids.
I’d be lying if I claimed that another parent’s pride never gave me a little twinge of envy when my son was first diagnosed and I was wrestling with the grief and uncertainty of it all. But I knew that was something for me to come to terms with, not that the other parent was trying to give offense. As he grew older and we learned the parameters of our “New Normal”, that went away.
Oh Daria you won’t believe how much I get the “I’m sorry” so I’m a bit sensitive about that
Hi, Daria,
Yes, bad behavior can happen because of a diagnosis. My two sons with Asperger’s can walk into a silent room whete everone is, say, reading, and they will talk just as loud as they’d usually talk. They see the nonverbal
Cues that we should be quiet here, but they don’t recognize them at all. This is true for every situation. They can’t figure out how to behave by watching others. Before every party, every soccer game, every field trip, they need to be reminded what the expectations are. If I leave something out, or something unexpected comes up, my kids will probably “wing it” and well, the results can vary a lot!
Another issue is “sensory overload”, which is usually misunderstood. Like when my oldest was told that he was being rude because he covered his ears and cried at a loud school assembly. My non-verbal 6-year-old can’t say “hey, I don’t like the bright lights at Target”, so he just tries to bolt out the door. My 8-year-old tries to block out unwanted noise by humming to himself, which is fine until someone tells him to do something and he seems to ignore them. Sensory issues can cause very wonky behavior.
There’s more, I guess the most common reason iis that I really have to choose my battles. My little guys have so much they need to learn and work on, I really have to let some things slide (even through my clenched teeth), or I’d have to pick on them constantly. :0
Ive been meaning to get over and read this. It’s a great post and I appreciate your questions. Unfortunately, for me, the answers are….it depends. If I know someone’s intent is kind and loving I don’t tend to get hung up on the details, I can tell you though that as My wheelchair using son is moving into his teens HE gets offended when people overly try to help him. The other thing that annoys him is always having to look up at people so I would say that is one thing you can teach kids…when conversing with someone using a chair, try and sit by them. If that isn’t possible, it is much more offensive to lean down.
Trying to be conscious when you are in a crowd if they can see is polite, clearing a wide path for them and telling your kids to get out of his way is not.
Holding a door is polite, especially if there is no handicapped button. If there is one, we teach our son ladies first and he should get the door (button). I will always remind my wheelchair using son to get the door for me the same way i make my non chair user.
One of the things my kiddo is most conscious of is people staring when he transfers. Chair users are pretty vulnerable during that and they hate the idea of falling in front of people. That is a time to kindly distract your kids from looking.
I think as special needs parents though we have a big responsibly in teaching others how we want to be treated. Maybe I will make my guest post for Gina on that!
Great insights, thanks Barb! I personally would love a post like that from you!
Thank you to everyone for such a wonderfully open conversation about the touchier subjects in our community. Thank you Daria for being willing to put yourself out there, even taking the risk that those who don’t know you would take your questions wrong….but I know you, and I know where you’re coming from and I am so happy our community has welcomed the curiosity and genuine interest in ‘doing the right thing’.
Hi Daria – You kindly wrote a wonderfully sensitive post. You honestly put out there what your thoughts & feelings are about SN families. I think you helped all of us by asking the questions and then giving the families a forum to provide their own answers, their own thoughts and feelings. This was very educational for me, from your honesty abt the topic and then the sensitive answers.
Thank you Kathy. I really appreciate your input and also for stopping by and commenting.
Hello.This is a great discussion. I have a seven year old daughter with global developmental delays. I really appreciate your honest questions Daria. I have two “typical” older daughters. Ella (my seven year old with special needs) just like my other daughters is the light of my life. The deep joy and pride I feel about her is no different. That’s what makes the “I’m so sorry” comments so tricky.
There are two things I would like to share with concerned and caring people who have friends with kids with special needs. The first is My heartbreak with parenting is not about Ella. It’s about how this world sees Ella. Maybe a better way to say it is how they don’t see Ella. They see her disability. They see her struggle. They see her as a liability. The comments from friends that mean the most to me are those that show me they have taken the time to really look and see who Ellla is. Her determination, her enthusiasm for life. Her acceptance of everyone. If you find a way to ask questions about who your friends children really are you can’t go wrong. For myself hearing about your kids latest soccer goal does sometimes cause twinges of pain to be honest. Don’t stop though. We need to all share our lives with each other and your kids successes are part of that. Just make sure you also ask about our kids successes. Ella put her socks on all by herself this week and I was jumping and screaming and cheering harder than any parent in a bleacher has ever done. Ella has worked for that for years now. My pride and joy made my heart swell. Please share this joy with me too. Notice the milestones of Your friends kids whatever level they happen at.
The second thing I would like to mention is as a Mom of a daughter with special needs is that I am so damn tired. I thought I was exhausted when I had two typically developing kids but this is a whole different level of fatigue. It’s physical and emotional and we will probably be that way our whole lives. So If we are handling things different than you would please just trust we re doing things the best we know how and yes you might handle a situation better than I am. You probably didn’t spend eight months though teaching your child the Mmmm sound and you might have slept through the night during the last seven years a few times so please don’t judge us.
Daria I love your heart and your questions. The best thing you can do for your friends dealing with special needs is teach your kids to value the people around them whatever the package.
I just posted a rather lengthy reply to this discussion. My name is Sarah. I stumbled upon this discussion through pinterest on my iphone and replied with the phone. I then came over to my computer and looked up the website. I now see this is a rather old discussion! October 2011!! Well I am thrilled to find this blog. Ella doesn’t fall into any of the common diagnosis labels and this leaves me feeling very isolated much of the time. I just read Gina’s “about the editor” and I am so thrilled to be able to start studying this sight. Thank you for taking the time to read my responses. Sarah
Thanks, this was such an educational post for me. The discussion provides great insight for those who do not have special needs children.