It's been my experience that people will say things to you simply because they don't know what to say about a situation, and somehow all of the pat cliches get said because I guess it sounds better than saying nothing at all.
I've gotten used to hearing people say, "Kids with Down Syndrome are so sweet", every time I tell them I have a child with Down's. All kids are sweet...to an extent. Sara is just as sweet as the next 17 year old, and just as challenging too.
Last night was rough. She was already in a bad mood because we would not let her spend the night at my mom's house. She had refused to help with chores the day before, so we told her if she didn't get up and help there would be no Friday night Nana sleepover. She still refused to get up and help, so we cleaned house without her. Then we enforced what we had said and she threw a fit. The end of this fit included having an accident in her pants, because by golly nothing says "Screw you parents!" like a 17 year old crapping her pants.
Like I said, sometimes it's rough. Kids with Down Syndrome are sweet, but they are also sad, nervous, happy, mad...all the normal range of emotions that other people experience are thiers too. They do not walk around blissfully happy all the time, they are not always "sweet".
The other phrase that gets me is, "G-d must have specially chosen you to be her Mom." Whatever. An egg and a sperm met up and one was a bit short on the chromosome contribution. End of story. I don't walk around thinking that G-d hand picked me to raise Sara. You get what you get and you don't throw a fit. Was I super thrilled to find out Sara had Down's? Did I fall to my knees and thank the creator for giving me such a wonderful gift? No. I cried. A lot. Then I picked myself up and did what any other mother would do. I raised her.
I'm not telling people to not talk to another mom about thier child with a disability. I'm also not saying that their life is total crap. Just know that thier life is not always rosy and "sweet".
My uncle had Down's. He was 12 years older than I am and always lived nearby, so I grew up with him, in a way. I just want you to know that I get it. I saw all of my uncle's moods and misdeeds and frustration as well as the good stuff.
ReplyDeleteHang in there.
Suzanne- Growing up with a sibling or relative with Down's gives you a whole different perspective. Thank you for "getting it" : ) Sometimes it's just nice to hear that someone else does.
ReplyDeleteI guess I'm a little in the God camp. I do believe he gave you Sara for a reason and personally he couldln't have choosen a better parent. You're one of the few special needs parents I've seen that doesn't give their child a "pass" for having a disability. You treat Sara just like the others and that, that right there, makes you a wonderful mom and her damn lucky and blessed to have you. Keep on, keepin' on.
ReplyDeleteYes, life is pretty "normal" with a child with Down syndrome. It may be a lot of work some days but the rewards are so wonderful!
ReplyDeleteKristin- I have never coddled any of the kids. I guess that shows ; )
ReplyDeleteBeverly- It was easier when she was little. The more difficult times have been since she turned 14.
Being a parent of any kid isn't always sunshine and roses. Having a kid that's not "typically" developing adds extra challenges. I know where you're coming from, even if I don't share your specific experiences.
ReplyDeleteGod did put our children into our lives for a reason. It's not always easy to know what that is, but it's there. I still sometimes wonder why I was given the challenges I have, but in the end, I simply do the best that I can and pray I'm doing the right things with His gifts.
May the Lord bless you and keep you, May the Lord let His face shine upon you and be gracious to you, May the Lord look upon you kindly and grant you peace.
Thanks for sharing that , my mom's good friends second child had downe's too , this was in the early 70's and many children were still sent away , she did not , they treated Micah just like everyone else , he is now getting married and a wonderful addition to the family , all kids have good and bad times and moods and behaviours , but I give you kudos because imagining having to clean up after someone that old who had an accident is not for the faint of heart . Hang in there.
ReplyDeleteI think people say the sweet thing because they don't know what else to say , they just want to say something positive.
Again thanks for sharing,
Chris
Just Beachy
I don't have anything eloquent to say so I will just have to ditto Kristin and Vince. They said it better than I could.
ReplyDeleteI think you hit the nail on the head in the first paragraph... (hugs)
ReplyDeleteTeenagers are sweet? Since when?
ReplyDeleteOh goodness...
ReplyDeleteI can only imagine how the "crapping of the pants" discipline talk went.
I'm SO glad that she did not choose Friday night to pull that! Ugh!
She was such a lady that evening. ALL your kids were fabulously behaved (including Travis!).
You are a great mom, and I admire the way that you manage them. :)
Girls her age are not fun, period.
ReplyDeletePeople are stupid. You know this. :)
(Sorry I don't have a prayer for you. Damn.)