Myth #1
People with Down syndrome are happy all the time.
John Michael and Luke are starting to mutually enjoy each others' company, which thrills me. To see these two together, as in the photo above, makes my heart sing with joy. And I wish it was like this all the time...
I love photography. Just as poetry captures the moment in writing, photography captures the moment visually. And while they say a picture is worth a thousand words... it's the moment before and after that remains unseen...
So, Myth #1 is that John Michael, and all people with Ds, is happy all the time.
NOT!
In the 20 minutes before this photo was taken, I had corrected John Michael a dozen or more times for patting Luke on the head a little too hard... Pulling Luke toward him too tight... For grabbing the sample of root beer float away from Luke that I was holding for him to taste... For biting my fingers (it was an accident, but his teeth are SHARP!) when I was doling out turkey burger patty samples... etc, etc...
Life, right now, is in constant motion... kinda like a carousel spinning out of control, and I can't find a way to jump off.
These two together are both wonderful and trouble at the same time. John Michael can go from total joy and fun to total fit for not getting his way in no time at all. He will say, "Mom! Mom!" until I say, "What?" and give him the answer he wants. If not, he'll keep repeating himself. I LOVE that he is talking so much... really talking... and then I feel terrible when he doesn't get the subleties of language when I say, "No, you can't play a game right now. Maybe later."
"Mom! Mom! Game. Cows."
"No, John Michael, no cow game right now."
"Mom! Mom!"
"No, John Michael, no game."
"Mom! Mom! Game. Cows."
Now, repeat 3 or 4 more times...
When he finally gives up, he cries.
Yes, it would be easier for me to give him the game, but I need to teach him that he doesn't get what he wants all the time (and I recently heard that cell phones are harmful to our kids and they shouldn't have them near their bodies too often).
Anyway, just wanted to bust that myth.
I'm glad it's not true... really.
I mean, I wouldn't want him just going through life without a vast array of feelings and experiences. I can say from experience, though, that when he's happy, he really is genuinely happy. And it's a wonderful thing. He's funny, too. I also love that he tells me he's happy.
"Mom! Happy."
"Yes, John Michael, happy. I'm happy you're happy. :-) "
And I think to myself... "Even though life is a challenge right now with you and Luke finding trouble together, I'm still very happy to be your mom, because the joy far outweighs anything else."
It can be tough---I so understand!! When one of us run errands we try to take a child or two just to give each other a break. Lately, it's been a toss up between Erin (age 8) or Michael (1year old) on who can be the tougher one to take. But I know that 'this too shall pass!'
ReplyDeletewilliam is going through a "tough" time too right now...seems like he needs so much more correcting than he used to but I guess it just a part of learning
ReplyDeletefunny I was just thinking about this myth! when Maddie was so not happy...made me smile...I am not a huge fan of taking the kids shopping with me...Maddie does everything Max does...the other night...Max got out of the cart...and there goes Maddie face first out of the little car cart...not great...but kinda cute! and when Maddie wants a hug..puts her little arms out...it is oh no and run...she will knock everyone down...hugs seem to be a lying down thing!! love the pix..JM has gotten so big...smiles
ReplyDeleteI love that picture of the boys! And your posts always make me happy Monica :)
ReplyDeleteMy 3 yr old wants to hold Malcolm and kiss him but she is overly zealous and I have to tell her to back off frequently. I am glad you are busting the myth of children w/ DS being happy all of the time. My Baby Malcolm who has DS definitely cries when he's hungry or poopy and he can get a bit 'p' 'o'-ed if I don't get to him quick enough and he is only 8 weeks old!
ReplyDeleteAh, yes...the "always happy" myth. I was just stopped at the Newcastle Community Celebration Day by someone who said Eva was SO adorable. I was buying lunch for the family, so I did that "auto-thanks" thing. But the lady persisted, starting to tell me about her nephew (assumably with DS?) who was "always happy" and I tried to pay her a little more attention, but she literally said the words "always happy" about ten times. I know she meant well, but it was exhausting to listen to. This is about the time Eva threw an oscar-worthy fit because I wouldn't let her open the chips I had bought. Secretly, I was glad to slip aways with my tearful, screaming two year old, leaving behind a rather flabergasted looking lady, LOL!
ReplyDeleteI LOVE how much JM is talking... it's a bit much for Sheridan, but he'll adjust again ;-) And I fully agree with you. Sometimes it's about picking battles, other times it's about setting (and reinforcing) boundaries. It's really important for ALL children to learn patience and that they can't have every single thing they want.
ReplyDeleteSuch a cute picture! Joep and Zef are mostly great together at the moment. I really enjoy watching them play with duplo lego blocks. Zef just sits besides the box and picks them up one by one and Joep is building stuff. Hope they will be friends forever!
ReplyDeleteAnd as others also said: your blog makes me smile, but also cry sometimes...
Keep on writing!
Love,
Maud