10 Things You Should Know About Parents of Kids With Special Needs
I’ve been the parent of children with special needs for 15 years and it has gotten much easier to deal with both at home, and in public. While I’ve spent many years keeping to myself about everything related to my life, because of – or in spite of, my children’s medical diagnoses, I’ve also been an advocate and informer when and where I could.
The majority of people do not understand what it’s like to live with being the parent of a child with special needs. It doesn’t even matter what your child’s issues are, the feelings that parents have all boil down to being the same set of emotions. While I can’t possibly explain to every non-special needs parent, I can give you my top 10 list of things to know about us. So, here goes:
Ten Things to Know About Parents with Special Needs Kids
1. We are not given only what we can handle! I personally don’t hear this much, but I know lots of people do – especially those in the church crowd. ” God will only give you what you can handle” and ” Special parent get Special kids” are two of the more popular lines. If you’ve seen the news over the last few months, you’ll know that there are plenty of parents who are not dealing well with their child’s disability and have broken down to the point of self harm and even death for their special needs kids. It’s very sad.
While the majority of us are handling it, we aren’t doing it any better (or worse) than you might. We don’t get a manual (just like typical parents) about how to raise our children. While those comments might sound like a compliment to us parents of special needs kids, it’s actually dismissive and can add guilt to our already overwhelmingly guilt ridden parenting. It feels like you are telling us that we “have” to handle things – that we are supposed to know how. But, we often don’t. We guess, just like most parents do.
2. We often need more child care than typical parents. But, it’s harder (sometimes impossible) to find qualified child care for our special needs kids. Since our kids may require medical attention, or special supports while out in public and even at home, finding someone who can provide those qualifications is often nearly impossible and has to be scheduled weeks or months in advance. We usually can’t just send our kids to “grammas” for the weekend. Sometimes, family and friends won’t even try to watch our kids for a few hours from fear or lack of experience.
3. Please do ask about our special needs – with an open mind. I’m happy to explain what autism is, or how it affects my daughter now that I’ve dealt with it for years. When I was a younger special needs mom, it wasn’t that I didn’t want to explain, but that I didn’t fully understand it myself. In fact, please ask, rather than just assume that my child is undisciplined or that her actions are without consequence. Believe me, I’m fully aware of your judgemental stare and would do much better at calming my daughter (and myself) if you would smile and offer help, rather than assume I’m a bad parent when my daughter starts to melt down in the store.
4. Retarted is not a good word. I know that it’s the word you are accustomed to, but it’s really used out of context so often that it’s become inefectual and sometimes downright offensive. While I don’t’ expect you to know that my child has Autism or OCD just from looking at them, I do expect you to be kind and respectful. I would not ask you ” are you retarded or something?” just because you don’t know how to lock the bathroom stall door. I would offer to hold the door shut for you. So, please don’t do that to us or our kids.
5. Just because they don’t talk they can’t communicate – False! My daughter is actually verbal and can talk, but sometimes, she’s too overwhelmed with the visual, audio or other sensory input to be able to use her words clearly. So, she will resort to using sign language of a sort. She might rub her tummy to indicate that she’s hungry, or will point to what she’s trying to say or do. Some kids use electronic devices like iPads or phones to communicate. They can push a button or two and the device will speak for them. When my daughter is especially excited or happy, she will clap and jump up and down, though she might not smile when she’s doing it. The lack of smile may confuse people who don’t know her. So, it’s okay to ask if she’s excited about something.
6. You should take care of yourself. Parents need self care, but when you suggest something that is just unrealistic like taking a vacation for the weekend without the kids, or getting to the spa, it’s rather insensitive. I’ve not had a vacation in years because I can’t get reliable care for my daughter who has autism. I also can’t afford it because I get to work only part time due to that lack of reliable and qualified child care. But, even more than that, we are busy with doctor’s, and therapy appointments. My daughter has at least 3 standing appointments per week, and while she’s gone, I’m busy getting household chores done, and maybe I can get away to grocery shop.
Rather than suggesting to a parent of a special needs kid to take care of themself, you could offer to help in some way. You could bring dinner one night, or offer to sit with the kids for an hour or two. And, if you make the offer, don’t expect it to be returned. Make it a true gift of your time and effort. The last thing we need is help with an expectation – that just ads to the guilt and stress.
7. Don’t make suggestions based on what you read or heard “somewhere”. I’m sure you are trying to be helpful, but unless you live with us 24/7 , you can’t possibly know what we already know and what we are comfortable with. How about you ask the parents if they want to know about new things that you come across, because you care and want to help – if it will be helpful. When you ask, you acknowledge that you don’t know as much as the parent does about their situation, but let them know that you want to be involved as long as it is helpful to the parents.
Don’t be offended if they turn you down. Many parents are overwhelmed with information after a diagnosis and your input might just add to the mountain they have to sort through. For seasoned parents, they may already have trusted sources that they get their information from.
8. Those kids don’t have a problem, they just need discipline. Many kids who have an invisible disability like autism or ADHD actually can’t control their emotions like a typically developing kid, and children with sensory disorders sometimes have reactions to small changes in environment that seem bigger than necessary. Those kids have a physical reaction that they can’t control, and often the parents can’t do much about it. Parents of special needs kids are often feeling anxious and exhausted. Offer to help in some way – by carrying their stuff out of the store for them so they can remove the kids from the environment. Hold the door open, or at least smile with some sympathy, rather than judgement.
9. “I know your life is so hard, I could never do what you do.” I call bullshit on this statement from all my friends. People start to assume that you have a really hard life every day, that there’s never anything to celebrate and that everything is a battle to be won or lost. That just isn’t true, and you should ask, rather than assume.
I do not feel like a superhero any more than another parent on my block does. I do feel lonely and unsupported some days, but that might come from being a single parent or being in a bad marriage just as much as from being a parent of a special needs child.
10. Don’t say anything – ignoring me and my kids is the worst thing you can do. We are human beings – people. With feeling! If you don’t know what to say, that’s okay, but don’t ignore us. I often feel like I’m the only grown up on our little special needs island and you ignoring me or my kid with the odd behavior is only making that worse. What happened to being friendly?
Can you please find some extra bit of patience to let us get through the line at the counter, and maybe help hold the door for us when I have to manage my shopping cart and hold my kid’s hand?
If you give us a minute, you might find that my child has a beautiful mind. She can make you smile when you least expect it.
Now that you have an idea of what parent of special needs kids are going through, can you think of how you might react next time you meet these parents? Have you seen good behavior and responsible citizens in your local neighborhood? I’d love to hear about it, so leave a comment below.
ellie
09/22/2013 @ 11:21 AM
Thank you so much for sharing this with us! GREAT advice! XO
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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-
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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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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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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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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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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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.
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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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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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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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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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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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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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
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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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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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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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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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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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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Daou H.
09/15/2013 @ 3:21 PM
Very informative post! Thanks for sharing helpful tips!
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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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Tess
09/14/2013 @ 7:47 PM
Thanks for the tips for people that dont understand.
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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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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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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.
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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Shashi
09/13/2013 @ 1:19 PM
Awesome post! #7 can apply to just about everyone.
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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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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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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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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.
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.
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.
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.
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.
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.
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.
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.
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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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!
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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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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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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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….
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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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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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”.
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!
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
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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