Am I the only Mom who has a child with Down syndrome who feels like they need to have proof of every single new thing their child does? If your kid learns a new word or skill do you feel like you have to have it on tape as proof that they can do it?!
I do.
And really, how sad is that? Pretty sad.
Yesterday I saw Russell holding a picture of his Aunty when all of the sudden he pointed to her and said
"Aunty"
Of course I ran and grabbed the camera and tried to get him to say it again...This never works. Once he sees the camera he shuts it down.
So I did what any obsessive Mother would do...I spent the better half of the afternoon stalking him through the house, hiding the camera out of view, while shoving the picture in his face trying to get him to say it again.
It didn't happen.
I did however get him to say it this morning!
Russell can say "Aunty"
It was during my stalking of Russell yesterday that I began to feel terribly guilty. I wondered why the hell I always feel the need to have proof that Russell can do something...Why do I always need to have it on tape to show people?
I didn't stalk my other children with my camera waiting around every corner to ambush them when they learned a new word...
Why do I do it with Russell?
Part of me tells myself I do it for no other reason than that I want to capture all these great moments we celebrate on tape.
Then the honest part of me says something very different.
The honest part of me says I do it because I think people will not believe me...I do it because I want to prove to people that Russell is very smart...I do it because I am afraid people seeing Russell and knowing that he has Down syndrome, will think he is dumb.
And that's the truth. And it hurts to admit that.
I should not care what people think of Russell...But I do.
I should not feel I have to prove daily how smart he is, because I know he is smart...I do not need to prove it to anyone...And yet it is a feeling that is always there, ever present.
I need that proof.
When I take Russell out I am always very aware of how he acts or behaves.
Sometimes in a Doctors office or something I will let him down to play...And he will act like a normal two year old...He will roll around and make funny noises or silly faces...And all I can think is what are other people thinking? When they see him acting silly do they see that he is just an average two year old boy?
Or do they see him acting...*sigh*...Retarded...Or Handicapped.
And as I type this I can't help but to cry. I feel horrible for feeling this way. I feel horrible that I am afraid to let Russell act silly because of how others may see him or what they may think.
Russell acts exactly the way my other children did, and I never once thought of making them stop doing something because others would think they were being strange...So why do I do it with Russell?
It is not fair to him.
I have this over powering desire to prove to others that people with Down syndrome are smart...I guess that comes from the fact that I myself at one time did not know that people with Ds were intelligent.
I want so badly to change that perception...But at the same time I don't want to suck the fun out of Russell's life. He needs to be able to act silly...He needs to be a little boy.
I need to stop treating him as though he is a teaching tool.
Does anyone else do this with their child? Does anyone else share these feelings I am describing?
At home Russell says a ton of things...He is constantly walking into a room and saying "Hi" to people...When we go into town or something and someone comes up to us and says Hi to Russell...He will not respond. He will sit there with his mouth open just staring at them. And it hurts my heart because I see him acting shy, and I know he can say Hi and he knows what it means...But other people don't know that.
All they see is a little boy with Down syndrome acting like he doesn't "get it"...And that makes me sad.
Does this make sense to anyone?
And as far as the proof goes and why I feel the need to have it...That could also stem from the fact that during Russell's Evaluations his Workers will not take my word for something...If I say Russell can do something and he won't do it that day for them...He will not get credit for it. They need to see it with their own eyes...As if I would lie about something he can do. Agrrr.
Anyway
This is what I am going to do from now on.
I am going to let Russell be a little boy who acts silly...AND...I am going to try my very hardest not to give a crap about what other people may think.
AND...
I am not going to stalk him anymore with my camera.
From now on if I say he can do something, it's because he can...And I don't have to prove it to anyone and either does Russell.
i know exactly how you feel...i don't have the experience yet of raising other kids besides cam...so it hasn't really bothered me too much, but i do chase him around the house with a camera because more than once i have had to whip out my phone and show a video of camden doing something that he refuses to do for his therapists. i have been to the grocery store and seen camden give that same stare to someone trying to interact with him, when he is VERY capable of responding...so yes, i get it...and i feel the guilt at times too. it is such a hard line to draw when what you think is best conflicts with letting your child be just a child.
ReplyDeleteTwice in one week. Hit the nail on the head here for me too. I constantly feel the need to prove that Abbie can do things. I also worry all of the time what other people are seeing when they watch her do regular stuff a two year old does. In my head, I have cooked up this idea that everyone will look at her behavior and think, "Ah. Down Syndrome," when a child without Down Syndrome could do the same thing, and they would think, "Ah...that kid must be around two years old." Really, I could go on and on in this comment making comparisons about how I could have written every sentence in this post. (Yep, in this one I could have written every sentence.) Glad you can express yourself so well, because you say a lot of things I can't manage to figure out how to say.
ReplyDeleteYes, I get what you are saying here. Your honesty is so refreshing, and this is certainly another internal battle I have struggled with and still sometimes do not know what to do with. It is because we are up against the world's stereotypes of what they think are kids should be...when we know it is so different. Our kids, as they grow, will be proof though just as the gentleman on the video was yesterday. I truly believe that.
ReplyDeleteI hope you do not abandon the camera completely Russell is to darn cute! I have to get proof because Maddie stops doing things...especially when she knows I want her to, there is a camera, or I bragging about it! I think that we do this because we are so thrilled that it is happening! we know how hard things can be and how long it takes so a triumph it is something to be proud of I bet your sister loves it! you all look alike! smiles
ReplyDeleteAwesome post! I struggled with this as well. I found myself subconsciously wanting to record and post things. I believe there was a thread of "see what he can do" running through it. I had to consciously let go of it too. I submitted (I thought) a video snippet of him saying, "Thank you" to Kelle Hampton's video montage. I inadvertantly sent a second of him shaking his head "no" when I asked him to say thank you. It bothered me at first that the "cute" video didn't make it to her but then I realized I was just trying to parade his accomplishments. Letting that mistake go...not trying to correct it...has helped me. Being Caleb's mom is such an interesting journey!
ReplyDeleteI'm starting to learn that no matter how hard we try, it may be impossible to break stereotypes. I feel awful for writing that. But if Russell and Ben are very high functioning, they will be considered the "lucky" ones. If they struggle, well, all the stereotypes will be reinforced. Because I've been thinking about this a lot lately, I've come to a similar conclusion to you. I'm going to let Ben be Ben. I've been thinking these thoughts thanks to my family member (sister-in-law) that I mentioned in a previous comment. She loves Ben very much and spends a lots of time with him but I can tell she would NEVER want a Ben of her own:(
ReplyDeletego ahead and stalk the kid with the camera, but do it for you...
ReplyDelete