I understand the sentiment behind it, and I agree. Your child having Down syndrome doesn't mean you should count them out, like I said back in her first birthday days.
Just because your child has Down syndrome, it doesn't mean she wont' read. Look at Samantha.
Look at all the things people with Down syndrome can do: act, play, dance, work, and more.
So I agree. I should expect.
But I also don't think it's that cut and dry. It's not black and white.
Expecting and accepting. They work together in a delicate balance. They are both necessary.
After I recovered from the initial shock of Kamdyn's diagnosis, and I accepted that Down syndrome was a part of our lives, I began reading about Down syndrome and what it meant. I read over and over: delays, will do everything, just later...... Even though I read it, my expectation was that Kamdyn would do everything around the same time her brother and sister did. For the first few months, that pretty much happened. But then, around 5 or 6 months, I began to understand.
Kamdyn at about a month old.
Her head control, her core muscle tone, her development was delayed. Accept.
Halloween 2010
So we worked on each area, and even though at times I felt discouraged, one day, she would get it. Expect.
This is a lost item I would love to find.
In those early days, my expectation was that Kamdyn would be walking at 18 months. We met an 18 month old at our Early Intervention Christmas party last year, and he was running up and down the ramp, over and over. "That will be Kamdyn", I thought. And we worked toward that. Expect.
Now, Kamdyn is 4 1/2 months away from turning two. Accept.
She has been making great strides in the gross motor area, and I am SO PROUD of her. I don't even know if that statement does my feelings of pride justice.
NDSC conference 2011
I watch her try to crawl up the steps by herself, and I fight tears.
She pulls herself to standing on a laundry basket, and I want to convene a parade in her honor.
October 2011
I'm past proud of her.
November 2011
But at 4 1/2 months away from turning 2, she's not nearly at a point of walking. She is gaining more confidence with standing, and she is getting sure steps soon, and we expect progress in the next few months: more standing, cruising..... But here I am, balancing between accepting and expecting.
summer 2011
At times, it's hard. We go to a birthday party at McDonald's, and all of the kids are running into the play place, and my heart hurts that my girl can't join in. But I'm also grateful for the lesson and the perspective I've gained from being in this situation. It reminds me where my value system should be. Do I value someone for what they can do? Do I value them for what they can offer me? Or do I value them simply because they are a creation of God, who is special and unique and beautiful and valuable, just because they are.
I'd love to hear your thoughts. When do you expect, and when do you accept?
The next three pictures are from a few days ago. We ate at Cracker Barrel after Austin's ENT appointment.
Austin's birthday is the day after Christmas, but we decided to have his party before Christmas this year, so I'm off to party, pirate style. Happy weekend.
This is a post that feels perfectly written from my own thoughts. I struggle with this too. My hubby has always kind of expected Cora to meet milestones on a typical timeframe. I would tell him that it wasn't good to expect that and then felt like I was doing her a disservice by not expecting enough. But it's true that I need to accept that things are slower. I have learned to expect, but to also accept that it WILL take longer, that it is harder and that it doesn't diminish her value in the least. In fact, I think it makes me value her MORE. We're going to see her 4 day older cousin in a few days and will watch him learn to walk while we are still probably quite a ways from even crawling. And that's OK. It does hurt sometimes, yes, but ultimately, like you said it is a fine balance between expect and accept.
ReplyDeleteExcellent post! And I agree it is a delicate balance.
ReplyDeleteI think for me I expect things from Russell the way I did my other kids...I never say he cant or wont do something because of Down syndrome...But...When we get to a certain point and he is just not able to do something, I accept. I think it's just a matter of not having low expectations for them.
And I just want you to know that back in August was the first time Russell ever stood alone for just a few seconds at a time! It was four months until he turned one. I didn't think he would walk until the new year cause he was no where close to being able to. But guess what...He proved me wrong and was walking by his second Birthday.
A lot can happen in 4 1/2 months :)
WoWsa! this is a toughie...I really do feel it is a delicate almost balancing act between accept and expect...I almost think it is my pride that gets in the way...I expect Maddie to thrive and grow...to become a contributing person in our community...I accept that with that comes limitation that have been put on her through ignorance and none educated people that see Down syndrome first and Maddie second...I believe human first...I expect Maddie to live a long happy life teaching and loving others...I accept that it may be with her immediate family and close family friends...I could go on and on but it feels like accept and expect are a teeter toter of sorts! great post! I must discuss this further with my husband!! smiles
ReplyDeleteThis is a great post! Thought-provoking.
ReplyDeleteYou put this into words so much better than I did the other day :-) I accept that everything is harder for Hailey. I accept that she will do things later. I expect her to do everything the boys did. I expect her to always do her best. It IS such a fine line between the 2. There are days I feel like it is walking a tightrope!
ReplyDeleteI feel the same way about Ben. I have high expectations for him but I accept he will do it in his own time.
ReplyDeleteI love, love, love this post! I have struggled with this same issue since Bailey was born, but couldn't never collect and articulate my thoughts like you did. I think this post speaks to me greatly because we want to always expect from our children but at the same time, accept exactly as they are, where they are. I think that as long as we are open to that - to knowing they will develop at their own pace and we will do all we can to give them the tools to achieve their potential - we are doing our job as their parents. Oh, and the other thing we are giving them is LOVE! Seeing Katie at the Blessing of Verity and Mia with the Cox family and so many other children that blossom under the love of families, I know that no matter how far our daughters go, we are doing the best we can for them and giving them the most important thing, which is love! Hugs, and thank you again for such a beautifully written post!
ReplyDelete