There has been a rant coming on, ya'll. I can't decide if the world has always been filled with so many ignorant people, or if this is a new epidemic. But having a special-needs child has allowed me to view the world in a new light, and sweet mercy, that light has exposed a truckload of ignorance. And that ignorance brings out what my mom always called the "Momma Bear Instinct." I might be really really nice, but mess with my cub, and you'll meet Momma Bear.
So I present... 10 things you really shouldn't say to the parent of a special-needs child.
1. She looks so normal. How do you want me to reply to that? I've toyed with responses... thank you? You should've seen her yesterday? Oh, you look normal today too. The reality of it is... a special-needs child may not fall into our realm of normal as far as meeting milestones, but she is quite extraordinary. And she doesn't have to look abnormal (whatever that is) to make our struggles real. You'd probably be surprised how many "normal" looking people have major things going on inside.
2. Don't worry, she'll catch up. Did you go to medical school? Because we see multiple therapists and doctors, and they quite frankly aren't sure if she'll ever "catch up." And, if by some miracle she does catch up, it will be the result of countless hours of prayer and therapy, not because she just got lucky, so please don't discount that.
3. Are you sure she isn't just ignoring you? Yes, I'm sure when my child doesn't respond to me she isn't ignoring me. She can't understand the language I speak most of the time. Do you know what it is like to be in a foreign country and not understand the people around you? That is how my child feels every. single. day. And I've never met an 18-month-old that could keep up a charade for their entire life... that would be some serious talent. Sometimes I feel like the mom on Mr. Holland's Opus... wanting to scream that I just want to speak to my child. Your child might be ignoring you, but my child does not have the ability to understand me.
4. Any statement that starts with, "Well my child can't even do...". People feel compelled to insist that my child must be doing great with her one accomplishment because their normal child can't even do that. It makes me want to shake them. And one day I might. Because for every one thing that my child can do that theirs can't.... there are 100 things their child can do that mine can't. And every accomplishment in this house is fought for... prayed for... paid for... cried for... begged for...and cheered for. Please don't act like we got lucky because your child can't even do that.
5. I'm sorry. I appreciate this sentiment more than the others, probably, but I don't need pity, and neither does my sweet child. She has to work harder than other children, and we have more to deal with than typical parents, but parenting is a big job no matter how you slice it... and we all have challenges. But please continue to treat me like your friend, and don't feel sorry for me every time you see me.
6. Your kid rules the house and might just need a spanking. Actually, my child doesn't have the capacity to understand a spanking, and so if I spanked her, she would look at me like why did you just smack me? And I personally cannot handle that. I'd rather repeat the words "sit down" 1000 times while people stare than have my child think I hit her for no apparent reason. And we do adapt our lives to help her, so maybe she rules the house. Wouldn't you do anything you could to help your child too, especially if they didn't understand the world they live in?
7. I know exactly what you are going through. Chances are, unless you also have a special-needs child, you don't. And having a kid that has been sick for a week or two doesn't qualify you either. Because part of the enormity of the job of raising a special-needs child is that its a job that never ends. Its hard now, and it will be hard forever, and you can't possibly understand the weight of that until you've carried it. You have NO idea what its like to wake up and think... is it PT or Speech today? Or to actually know your way around the hospital, and have the phone number of the hospital operator memorized. Or to have a button installed in your house that will call the ambulance by pushing it. Need I go on?
8. I didn't invite you because I figured you were too busy with all that you have going on. I don't know how you do what you do. My life is hectic and crazy, but it won't change anytime soon, and I'd really like to still be invited to go shopping or attend a playdate. I don't know how I do what I do either, but if you were in my shoes, and did all that stuff, you'd need to go out and buy cute shoes even more. So please still invite us...we might move slower, but we aren't contagious!
9. Do you have any other children? I'm not even sure what this implies, but yes, I do, and she is "normal" if that is what you are wondering. Will that be all?
10. Do you agree with the doctors, because doctors get it wrong all of the time. Yes, I do. And I wouldn't drive over 700 miles to a specialty hospital every three months if I didn't agree. Or give up two hours of each week for therapy. Or spend countless hours looking into resources and reading about treatment plans.
Now, because my own mother has taught me to always be positive, I also present 10 things you should say to parents of a special-needs child:
1. I made two casseroles for dinner today. What time can I bring one by for your family?
2. I don't know what to say, but I love you and your precious child.
3. Sounds like you are doing a great job.
4. You encourage me.
5. I know your child had an appointment today, how did it go?
6. How are you doing? (And really listen to the answer.)
7. Lets have a playdate. What works best for you guys?
8. Drop your other children off here on your way to the next doctor appointment.
9. Those people over there must think your child is gorgeous because they can't stop staring! (Or any other comment to stop the staring. I saw a funny t-shirt that says, "If you stare long enough, you'll see me do a trick.") We deal with the staring all of the time, and its nice when someone else has our back.
10. I'm praying for you guys.
Please, please be sensitive to those around you with special-needs children. They don't want your sympathy, but a little sensitivity never hurt anyone. A little insensitivity, on the other hand, can cause a world of damage. And maybe even a blog rant. ;)
12 comments:
And you ARE doing a great job, Lauren! Your girls are blessed to have such a caring and devoted mommy. Thanks for the insight today.
haha very good Lauren! so glad you posted this. My little brother (my dad and stepmom's son) has down syndrome, so I'm all too familiar with what you said. It too opened my eyes to how insensitve and rude people can be!
Awesome post!!!!!!!!!!!!!!
Hi Lauren,
I don't know you, but have read your blog for a while. I love how you addressed people...my brother has cerebral palsy (he's 30)...and is confined to a wheelchair. I remember the stares, glares and people who thought they knew our situation better than ours, teachers especially. These kids are NORMAL, they just move a little slower and do not deserve the ridicual that comes from having a disability. I admire that you have a husband and family that loves and supports you...because it is a struggle to have a child with a disability, but it is also rewarding!! It's a disability - not a disease - and yes - you are so right - you don't need to be treated any differently. Keep up the good work!!
Well, said. Love you girl. I got your back!XOXOXo
Thank you for sharing this! My family is in the process of adopting a special needs child, and although that experience will no doubt enlighten me in many areas, I have always wondered what to say (and what not to say) to families with special needs children.
Lauren, I LOVED your post. It REALLY hit home to me. I agree with EVERYTHING you said. I am going through the exact same things. Thanks for you insight and you are a GREAT momma!!!
Very nicely put Lauren! My youngest (4 years old) has type 1 diabetes, and I hear many of the same things. While he doesn't look sick (however you're supposed to look), he does have his own share of struggles. I can't believe the things Grown adults say! May God bless you and your family! And rest assured, you ARE doing a great job!!!
:-) Love those positives! Love you too.
That was LOVELY! And, yes, we totally should get out "normal looking" children together next time I'm in Roanoke (or even meet half way). May I add a #11 and a #12?
11. "Oh, that's nothing. It'll be over before you know it" ........ really? And I'll bet it'll seem SUPER fast in your world because you don't deal with it everyday!
12. (and this one is unique to Jax) "I wish I could just put my kid in a cast and all of his problems would go away like that!" {insert finger snap} ........ yeah, someone actually said that
LOVE YOU!!!!!!
And, for the record, you SO VERY MUCH inspire and encourage me. You are the ONLY friend of mine who has even checked on Jax this week. I am so thankful for you.
BEST WISHES TO BROOKLYN, SAVANNAH, DARREN, and the amazing "Momma Bear" of the pack -- you!
I enjoyed reading your post! My daughter was recently diagnosed with some medical condtions that my husband and I are learning to deal with. Your words have provided encouragement and insight! Good luck to you and your family!
I can totally relate to all you said- I have a 12 year old with Down's Syndrome - I get the stares every time we go out...especially when we try to go to a store and it takes us an hour just to get a dozen eggs. One day I had to go to Sams and it was not a good day to go but I had to and didn't have anyone to help me. I got one buggy filled and was just about finished when the fit started.... Someone found me another buggy so I could put my child in it (they did offer to hold the buggy after it kept sliding away from me - he weighs 140 lbs). They took my full buggy to the front of the store for me so I would not have 2 buggies to push/pull - which was a nice gesture, but... by the time I picked up the last few items and got to the front of the store - I could not find my buggy. I inquired where they left it - and someone who worked there had just finished putting all of my groceries back....Mama Bear really came out that day. we were in the store for 2 hours
- finally got every thing we needed and we got to the car BY OURSELF WITH MY 2 BUGGIES exhausted. So yes we got plenty of stares that day...but that is a typical outing for us. A 5 minute task - takes an hour. My Mom says I have the patience of Job...but it is a choice - be patient and try to see things through my childs eyes - or loose it and really be stared at...SO I CAN REALLY RELATE TO YOUR BLOG AND REALLY APPRECIATE YOU POSTING IT. I REALLY NEEDED TO READ IT TODAY! THANK YOU! HOPE YOU HAVE A BLESSED DAY! AWESOME POST!!!
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