why?

This evening was a little different from most.  One reason is that my buddy went to bed early leaving me and monkey bear to enjoy a little one on one.  As she was decorating cards for her cousins birthdays, she started in on the questions.  Tomorrow we have a new teacher coming for my buddy.  She's part of his early intervention team.

Monkey bear's first question was, "Why is the teacher coming tomorrow?"  I give my usual answer of, "My buddy has Down syndrome and needs some extra help learning different things."  The conversation continued from there....

"Will I have Down syndrome?"
"No, it's how my buddy was born and he'll have it his whole life."
"Why does he need a teacher?"
"His brain is a little different and he just needs extra help."
"How is my brain?"
"Uhhhh, your brain is regular."
"Was I born with Down syndrome?"
"No, just my buddy.  He'll have it forever.  It's just how he is."
"Why does he have Down syndrome?"
"It's just how he was made... just like you have brown hair.  Do you want more stickers?"

I don't want the words Down syndrome to come as a surprise to my kids, but at the same time, I don't want monkey bear to think that my buddy is all that different.  I hate to focus on it, especially when I know that an almost 3 year old has no real way to understand.  If I'm being honest here - I'm not even so sure I totally understand.  I don't know what goes on in his head.

I can't fault monkey bear for being so curious and for the part of her that wishes she has Down syndrome too.  As far as she sees, he gets lots of adult playmates and away with WAY more than she gets away with.   It's a fine line between treating him the same and giving him the intervention he needs to be the best he can be. 

kids like mine

My friend is taking a children's literature class and one of her assignment was to look at older children's books and compare them to newer ones.  One thing she noticed is that books in the 50's were more homogeneous.  Nowadays we see every race, gender, and hair color represented.  That got me thinking.

How many books, TV shows, advertisements or movies have kids that look like mine?

Very few.

You'll never pick up a main stream children's book and see someone with Down syndrome in the mix.  You never see a Pampers commercial or formula advertisement and see my buddy... mostly because he doesn't follow direction well and refuses to pose for the camera... but that doesn't change the point that they aren't out there.  I have found specific Down syndrome books or catalogs for kids with special needs and, thankfully, there is Sesame Street.

I really considered taking the matter into my own hands and contacting a talent agency and getting my buddy out there and raising awareness and pushing for our rights.  But then I realized who I was (and who he is) and thought better of it.  I'm not sure what I can do, but I do hope some day to flip through a book, and randomly, see a child with Down syndrome doing just what all the other kids are doing.   No special mention.  No bells and whistles.  Just hangin' with the other kids joining in the fun.

messy boy

Oh the bottle saga continues.  I've been working forever to get my buddy to drink out of anything but a bottle.  Just when I gave up and decided I would wait to push the issue, he decides to chew holes in the bottle nipples.  My buddy was finally able to hold the bottle himself while sitting up and be independent with it.  Of course, the milk poured down his chin soaking his shirt.  He has a knack for taking a swig then, before swallowing, shifting the bottle to the side for a little chewing action, thus dribbling milk down his face.

This kind of messiness is nothing new to my buddy.  Monkey bear has been heard saying, "I love my messy boy."  When my buddy decides that the mouthful of food he currently has isn't quite right and he would prefer a sip of milk, he simply spits the food out.  If you offer food he doesn't want.  Instead of signing "no" he takes then food then lobs it across the room.

I've tried giving him a sippy cup with no valve in it.  He uses it to pour all over himself, the floor, the cats, and generally anything within reach.  But not so much in his mouth.  For whatever reason, my buddy will/can not suck on anything other than the bottle.  He has not figured out that in order to get something yummy out, you need to suck.  My buddy simply bites.  Not very effective. 

I've tried every method I can think of or get others to recommend.  Nothing.  It's not easy to teach someone how to suck on a cup.  I'm considering going cold turkey on the bottle - with maybe just one before bed.  Perhaps it's that stubborn I'm-going-to-hold-out-for-a-bottle streak that has been holding him back.  We all know how stubborn my buddy can be.

busy, busy

I wonder if all the appointments will ever slow down for my buddy.  This week we have a chiropractor (to help with reflux), speech therapy, physical therapy, and occupational therapy.  All that attention and focus on him... no wonder monkey bear is regressing.

We are in a phase of baby talk, carry me, snuggle me, put on my footie PJ's all day, etc.  I indulge when possible, but I put my foot down at leaving the house in footie PJ's.  I'll also sneak in a, "Mommy can't understand you when you talk like that so I don't know what you want."

In her defense, my buddy gets more than his fair share of attention.  Being younger, he just isn't able to do what monkey bear can.  I still need to feed him (assuming I want less than 70% on the floor), there are exercises to do, sign language to learn and teach, tons of encouragement, lots of hand-over-hand to teach him different skills, and all the therapies... not to mention the doctor appointments.

I assume at some point life will even out and I won't feel so controlled by the never ending list of "trained professionals" we must see in order for my buddy to be the best that he can be.  I don't want to hold him back in any way, but at the same time, there are days when I resent all the people involved in my parenting.

looks

Everyone loves to play the who-does-the-child-look-like game.  Monkey bear gets it all the time - strangers, close relatives, and people we see once in a while.  But not my buddy.  Very few ever make a comment on who he looks more like.  It is because all they see is Down syndrome?

I find my buddy irresistibly cute (so I am a little biased) but I also see Down syndrome all over him.  When we are at the park and a well meaning mom says how good he is walking or how cute he is, I wonder, "Did she leave out - considering he has Down syndrome."  Can strangers tell?  Do they see it in his almond eyes and squashed in nose?  Or do they genuinely think he is cute and a great walker? 

As for me, I see it both ways.  My buddy warms my heart and is adorable.  He strides up and down the hallway with such confidence and pride.  But I also see the hours of physical therapy that got him to walk.  And the slightly flat side to his head because his low tone as a baby caused him to favor one side. 

I sometimes find myself wondering - is my buddy acting that way because it's just how he is or is it the Down syndrome.  As if Down syndrome is something separate and not all jumbled up in the DNA that makes us each unique.  I just read a quote that said, "What if people with Down syndrome don't have an extra chromosome, and we're just missing one?" 

Now there's a new way to look at things.