52 Comments

  1. ellie
    09/22/2013 @ 11:21 AM

    Thank you so much for sharing this with us! GREAT advice! XO
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  2. Crystal @ frugalscout
    09/18/2013 @ 4:54 PM

    Hi and thank you for sharing your personal thoughts! I have worked in a setting with special needs high school students for last 5 years. And though, I can not relate with you because I don’t live with a special needs child, I can say that I agree with everything you have posted. The fact of the matter is that some people just don’t care to know and the one’s that do care are afraid to ask without them sounding ridiculous.

    -FS-

  3. Zan
    09/18/2013 @ 4:23 PM

    Some people have no respect for those with special needs….I am not a mom of a special needs kid but from what I have studied in special education, they are basic people like us who just needs a little more help:)
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  4. Shereen
    09/18/2013 @ 3:24 PM

    I find that way too many people have opinions on how you should parent even when you DON’T have a special needs child. My MIL was a teacher who worked with the special needs her whole career and has had so many great things to say about the kids and how to interact with them. Even a smile can make a kids’ day, so if you aren’t sure how to act, that at least starts you off on the right foot.
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  5. Jennie
    09/18/2013 @ 9:59 AM

    I’m very shy and more likely to not say anything at all [to anyone, special needs or not] than say the wrong thing, so I guess #10 is for me, but I have to admit the rest of the list intimidates someone like me, who already finds speaking difficult. Makes it seem very easy to misstep. Personally, if I’m having trouble with my kids, the last thing I want from stangers is any attention at all [unless, of course, one of them is actually escaping…] I’d rather just shove everyone in the car, lock the doors, and cry by myself…
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  6. Jobi and Fisher
    09/18/2013 @ 8:45 AM

    Thank you for such an open and honest post! I am not always quick to know what to say to a mother and child with special needs. Because of my own health right now, I have heard some strange things and finally came up with a universal answer: I would prefer you thought kind thoughts about me. Maybe you can use this sometimes, too. Great post! and I am happy to get real information.
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  7. Karen
    09/17/2013 @ 11:11 PM

    I thank you for your candid expression of your journey thus far. I have worked with special needs students as a substitute teacher and as a licensed counselor in special education. I think your points are well made and will hopefully enlighten others.
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  8. kathryn Evans
    09/17/2013 @ 9:45 PM

    its so sad that we actually have to have posts to open the eyes of others. I am sure when all is said and done, your blessings will be triple fold.

  9. Jane @ Devoted Sonriser
    09/17/2013 @ 3:44 PM

    Thank you for the honest peek into your life and feelings. It can be hard to know what to say to a hurting soul.. Especially because no one really does know what another person is going through. I think many people err on the side of number 10 to avoid saying something potentially annoying. But I also think it’s important to try not to be offended by people’s awkward attempts toward sympathy and conversation, because that will just push them away and contribute to more silence and loneliness. Easier said than done, though. . .
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  10. Tatiana
    09/17/2013 @ 1:43 PM

    Wow, awesome post! My MIL just said the first one the other day, and I was like, “hmmmm….I don’t think so”. The statement actually annoyed me, as I know it is definitely not true all the time.
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  11. Rhonda
    09/16/2013 @ 8:51 PM

    Thank you for your insights. My daughter has OCD and I hate it when people refer to themselves as being “a little OCD” when they are really just being organized. OCD is not fun or helpful, it’s painful and takes a lot of work to deal with. I try to remind myself that they really don’t know what they’re saying.
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  12. Natasha
    09/16/2013 @ 6:01 PM

    Thank you for your list! Good things to keep in mind. I have enough friends with special needs kids that I know how ordinary people end up with extraordinary children — and sometimes it’s exhilarating and sometimes it’s exhausting. #1 is a personal pet peeve of mine… I could go off on a rant… but I’ll just acknowledge that attitude is crazy-making and leave it at that!
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  13. Jean Wise
    09/16/2013 @ 5:32 PM

    Thank you for this special insight into the world of a parent of a child with special needs. I liked the honesty and yet felt like you were putting me down but helping me to understand better.
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  14. Tiffany
    09/16/2013 @ 10:53 AM

    I wish more people would pay attention to #4. That is such a horrible label.
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  15. Jennifer @ The Jenny Evolution
    09/16/2013 @ 9:16 AM

    This is such a wonderful article! I have two children with Sensory Processing Disorder and I can’t tell you how often the parents of my online community hear all of the harsh things you said. The one that drives me the craziest — you should do something special for yourself. You think?

    I run a sensory website and am beginning to reprint articles there that I think are particularly wonderful. These reprints get a lot more “eyes” than the posts where I direct people to something they may want to read. Would you consider being a guest blogger? We get more than 30,000 hits a month with 10,000+ Facebook followers alone. You can find me at http://www.thesensoryspectrum.com.

    Regards,
    Jennifer

    The Jenny Evolution
    http://www.thejennyevolution.com

  16. Aimee
    09/16/2013 @ 8:38 AM

    This was an amazing post. Thank you so much for sharing it with us. My daughter was born with a birth defect and so much of what you said really hit home.

    I often feel like I have a club and I am the only member. I have been through things my friends have not with their children. When my daughter gets bullied and teased they say…kids are cruel. And all kids are teased.

    But this is different. She is being made to feel like she is different. She is being treated different. And that is not okay! That should not be accepted or tolerated. She doesn’t deserve that. No kid does.

    Too often people just don’t get it. That haven’t been out at public and watched people blatantly stare at their child. That haven’t had their child come up and say, ‘mommy when is my next surgery. I want my surgery – I want to look like everyone else.’

    Makayla has had 2 surgeries and will have at least 1 more. But the scar will always be there. The scar on the outside and the ones inside.

    I wish it wasn’t such a cruel world. I wish people embraced one another’s differences instead of tormenting those who are “different.”

    We are all different. There is no one mold we are all made from. I tell my daughter all the time – find the new kid. Find the kid sitting along. Find the kid that others label as weird or geeky. Find the kid who loves the arts. Find the kid with their head in a book all the time. These are the people who will shape the world. These are the people that are the lifelong friends. Who don’t fit into the “mold” and who don’t want to. Encourage your kids to be unique and “different.” Or better yet – encourage them to be who they are, and to encourage others to be who they are.
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  17. Molly
    09/16/2013 @ 8:02 AM

    Thank you for sharing your first hand perspective on this tender subject. It seems like something that unless you walk through it yourself of with a loved one, people aren’t exactly sure how to handle it without seeming offensive.
    My cousin’s little girl is special needs, and until then I’ve never known a special needs child. I was honestly not sure how to act around her without feeling like I was going to say or do something wrong, and my cousins best advice to me, like yours, was to just ask. It’s so simple, but just chatting about it and getting a bit of understanding goes a long way. It’s also good to teach our children your same bits of advice you’ve offered here, so that they know the appropriate ways to respond.
    Thank you so much again, for your post and insight, it’s truly valuable information.
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  18. A Swirl Girl
    09/15/2013 @ 10:28 PM

    I appreciate the way you have shared your heart in this post. I have several friends in different states who have autistic children and I have been blessed to learn from them much of what you stated. I’ve learned to not make “default” statements or assumptions (many of which you listed above). Sending love and prayers to you that you will be blessed to find someone to help with childcare.
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  19. Charlotte Anne
    09/15/2013 @ 6:08 PM

    I am a psychologist in the making and we’ve been dealing with these beautiful children. Based on my experiences they are good, and not that bad at it may seem to others. I like these kids more than the normal kids. And I agree with you they are not the problem, these kids just needs nurture and guidance. It is not their fault why are they like that. They can excel in many ways. 🙂
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  20. Charlotte Anne
    09/15/2013 @ 6:07 PM

    I am a psychologist in the making and we’ve been dealing with these beautiful children. Based on my experiences they are good, and not that bad at it may seem to others. I like these kids more than the normal kids. And I agree with you they are not the problem, these kids just needs nurture and guidance. It is not their fault why are they like that. They can excel in many ways.
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  21. Stacie
    09/15/2013 @ 3:38 PM

    Thank you for sharing this. We all need reminders that we are all human and holding the door for someone is always a nice gesture that anyone can do.
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  22. Daou H.
    09/15/2013 @ 3:21 PM

    Very informative post! Thanks for sharing helpful tips!
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  23. Val
    09/15/2013 @ 2:33 PM

    Our best friends child is severely handicapped. He has trisomy 1. Now that his Dad has full custody he’s developed so much more than anyone said he ever would. He doesn’t “talk” but he definitely communicates. We’ve been around this boy since he was born but my hubby is still amazed at how much I can tell what he’s saying. It’s pure “gibberish” that comes out of his mouth but having been around him for 16 years I know the patterns and the body language that go along with it. Once I started figuring it out a few years ago it helped so much!
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  24. Tess
    09/14/2013 @ 7:47 PM

    Thanks for the tips for people that dont understand.
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  25. Felicia
    09/14/2013 @ 6:57 PM

    Thanks for this post. I think if we as humans and as mothers just treated all children with the same amount of love, respect, patience and understanding it would help. You have some wonderful tips and insights, thank you again for sharing this.
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  26. Nickida
    09/14/2013 @ 6:23 PM

    Thanks for this great post. I just shared about my son’s speech delay and I am learning to deal with it now that he is around people they notice his lack of words and its so frustrating when people constantly ask when he gonna start talking. I know it’s not like some of the problems other families have but I think not having knowledge makes us ask and say insensitive things at times.
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  27. Tamara
    09/14/2013 @ 11:17 AM

    Thank you for sharing! It is hard to explain our circumstances to others that don’t live regardless of what it is. Thank you for taking the time to express your thoughts to help us better understand.

  28. Kristin
    09/13/2013 @ 5:47 PM

    Thanks for writing this. This is such a sensitive issue…I have friends with special needs children (and years ago, I was a stepparent to a special needs parent) and, truthfully, I am very measured with my words and actions, because I don’t want to come off as insensitive or offensive. So, of course, it makes me sometimes fall victim to #10…because there are times I just don’t know what to say — so assume it’s safer to say nothing. I’ve also been a person who has assumed #9 is a “compliment” to a special needs parent. If I’ve ever said it (and I probably have), it came from a place of awe and amazement and admiration, not a negative place. However, I see your side of it, and I’m taking note.

    When I was a stepparent of a special needs child, wow…it sure was a treat to deal with the judgment and the looks and the comments and so on from strangers at the store or at a restaurant or wherever. I mean, seriously…are there people out there who REALLY think that when a child with special needs has a crisis or a meltdown, that’s just a “bad kid”? That never occurs to me when I’m out in public and I witness a situation like that. There’s still a whole lot of progress to be made, as far as it comes to educating and raising awareness. It’s getting better — but hopefully it will get a whole lot better!
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  29. Shashi
    09/13/2013 @ 1:19 PM

    Awesome post! #7 can apply to just about everyone.
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  30. Pam
    09/13/2013 @ 8:22 AM

    Great post. I special needs or invisible needs, I certainly can relate to some of these top 10 things to know.
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  31. April S
    09/12/2013 @ 4:03 PM

    Hi Jenn! What a fantastic post, and incredibly helpful. My husband and I are in the process of adopting (hopefully) a sibling group from foster care. We’ve had quite a bit of training on special needs, so even though I don’t understand your experience personally, I can understand exactly why you would share these 10 things. Number 1 also drives me nuts, when I hear it. It’s not true at all, as I believe God DOES give us more than we can handle. often. You’re right, it’s typically the “church crowd” who says it (and i’m a pastor’s wife). I can understand why that would come across as dismissive, or guilt-ridden. Number 8 also resonates with me too. We’ve been learning that children who come from hard places, through adoption, and especially those with special needs must be parented differently than you ‘typical’ child. It’s not that the child ‘won’t’ behave, it’s literally that they ‘can’t.’ That was really eye opening for me to learn, and will shape the way i parent my (potentially) special needs kids. Thanks for writing this post!
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  32. Carli
    09/12/2013 @ 1:57 PM

    Thank you for this! I will totally be sharing! I never actually thought of a few of these before but I can totally understand where you are coming from now that I have read this. Thank you for opening my eyes!
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  33. Jenn
    09/12/2013 @ 12:29 PM

    I’m so glad you had the patience Stacy! It has certainly been a learning process for us all, but I think I’m a better communicator because of it.

  34. Jenn
    09/12/2013 @ 12:28 PM

    I wish that you were not alone Kimberly. However there are too many people in the world who only think about themselves and can’t imagine being in anyone else’s situation.

  35. Jenn
    09/12/2013 @ 12:27 PM

    I know that knowing what to say is pretty difficult, but just a smile can change the whole situation for us parents.

  36. Jenn
    09/12/2013 @ 12:27 PM

    Chrystal, print it out! Hand it out to everyone you can think of! I’ve considered printing up biz cards to hand out to people who obviously don’t get it. I don’t know if it would help though.

  37. Jenn
    09/12/2013 @ 12:26 PM

    It’s funny, #7 showed up several places this week on the internet for me and mostly it was from parents of typical kids.

  38. Jenn
    09/12/2013 @ 12:25 PM

    April, I’m so glad you can take this to heart. So many people dismiss this information, especially from us moms. You may have heard that we moms are especially emotional about our kids.

  39. Jenn
    09/12/2013 @ 12:24 PM

    I don’t want to be on a pedestal. It’s waaay too easy to fall off, lol! The discipline thing is probably my biggest peeve. Thanks for thinking about this.

  40. Jenn
    09/12/2013 @ 11:59 AM

    Thanks so much Cricket. I also have the “invisible” issues with arthritis and fibromyalgia, so I know what you mean.

  41. Cricket
    09/12/2013 @ 7:37 AM

    This post was so moving to me. I don’t have kids – special needs or otherwise – but I know what it’s like to live with an “invisible” condition. A lot of the things that you mentioned apply there, too, so I know somewhat how you feel. These are great tips for anyone who encounters special needs kids and their families, and I know some folks who would appreciate getting this link. 🙂
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  42. brandy
    09/11/2013 @ 11:50 PM

    Thank you for sharing you personal story here on your site. I do not have a child with special needs, but many of my friends do. Downs, Autism, etc. I put these parents on a pedestal and think they are amazing. Some of the points you mentioned here are so sad and need to be addressed. Especially the “they just need to be disciplined”. I hope more people take heed and educate themselves on children with special needs and how to support the parents too!

  43. April
    09/11/2013 @ 11:35 PM

    This was honestly an AMAZING post. I learned so many things I hadn’t really considered before. I recently found out that a family member’s son has Autism, and it’s the kind of subject that I can have a hard time talking about (not that I’m uncomfortable, I’m just awkward and afraid of saying the wrong thing). Now I know what to say, what to ask, and how to approach the subject easier. Thank you so much for this post.

    – April
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  44. Terra
    09/11/2013 @ 7:06 PM

    I especially like #7. In fact, I think it applies to parenting in general. Don’t give unsolicited advice, period. I really enjoyed your post. Thank you!
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  45. Chrystal
    09/11/2013 @ 2:23 PM

    Wonderful post. This is one of those that I want to print out and hand to everyone I know.
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  46. Cindy b
    09/11/2013 @ 2:09 PM

    Thank you so much for sharing this! It’s so hard to know what to say when you have no idea what they are going through….

  47. Kimberly Turner
    09/11/2013 @ 8:54 AM

    I do not have a special needs child, but I would never treat anyone differently because of their children, and whatever ‘disability’ they may or may not have. We all have our struggles in life.
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  48. Stacy @ Flights of Delight
    09/11/2013 @ 8:47 AM

    Growing up, the brother of one of my good friends had special needs and couldn’t communicate with many words, but we always knew what he wanted. Sometimes it just took a minute to stop and observe him a little more closely, but he was always able to motion to tell us what he needed. He was a great teacher in showing me how to just take an extra moment to really see kids with special needs to figure out how I can help. Sadly, not everyone understands that and just write them off with their own hasty conclusions. Thanks for your insight!
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  49. Jenn
    09/09/2013 @ 12:52 PM

    Oh Stephanie, I heard #8 from an uncle and even from her dad. Though he’s come a long way in uderstanding that it is about her environment more than just the “rules”.

  50. Jenn
    09/09/2013 @ 12:50 PM

    Tamara, you are so right about finding the humor. Our first therapist told me often to use sarcasm if it made me feel better – even if the other party didn’t get it. I know some don’t think sarcasm is good or funny, but when you are on our end of it so often, it’s sometimes all we have!

  51. Tamara (Mom Is A Basket Case)
    09/09/2013 @ 12:38 PM

    Oh #1 hits home for me…I mean they all do but this one just irks me. I feel that what they are really saying is, “Thank God it’s you and not me.” I’ve had moments (mostly during the bad days) of wanting to smack people for saying things like I am a special person to have such special kids. Yeah? WTH makes me so bloody special? Really! Why can’t YOU be special, too? Here, take my kid for a week and you CAN be! LOL Gotta find the humour in it or I’d burst at the seams LOL

  52. Stephanie @ From the Burbs to the Boonies
    09/09/2013 @ 12:27 PM

    Thank you for such a candid, important post. Number 8 makes me madder than just about anything in the world as I have been the recipient of that. One of the most amazing things I have ever found as the parent of a child with ADHD is that when I meet another parent with a child of ADHD, we bond immediately and have an impromptu support group wherever we are. We may never meet again, but we have helped each other in that moment. No one else quite gets it like another parent who has been through it. Thank you.
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