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.

only 2

Ever so often, I need to remind myself that monkey bear is only 2.  She is so responsible and well behaved that I tend to forget and expect too much of her.  The past couple of weeks I have noticed her trying to get more attention.

When my buddy was a baby, I made sure to say, "Mommy has to feed the baby and then I can ____".  I didn't want monkey bear to think that it was the baby mucking up the works.  But as he grows, I've stopped that and now it's more like, "My buddy is starting to fuss, we need to leave the playground."  Or, "My buddy has (insert therapy here) so we need to stay home this morning."

I can see her frustration and desire for special time with Mommy.  It's such a fine line to walk.  My buddy needs more of me - physically because he's still young, time wise to attend to all of his therapies and Dr appointments, and emotionally because he is entering into the zone of behavioral issues that need to be dealt with.  But I know that she needs me too.

I think I'll have to do the dishes while they sleep and carve out some snuggle time.

smile from the heart

Yesterday we went for a ride on a carousel.  Monkey bear decided that my buddy wanted to ride the elephant and she would be on the horse right next to him.  We paid the fare, strapped the kids onto their respective animals, and waited for the fun to start.

My buddy was squirming all around trying to escape.  No fear that he is 4 feet off the ground on a giant mammal.  Attempting a cowboy like dismount off one side while Mommy holds one with one hand trying to get a picture at the same time, I thought it was going to be a long ride.

Then the music started and we began to move.

I don't think I've seen a smile so big last for so long.  I swear it started in his toes and filled every cell in his whole body.  He could not get enough.  There is something in that smile.  No thoughts that someone may be looking, or perhaps you should "control yourself".  Just the feeling of pure joy written all over his face.

One dream I have for my buddy is that he never loses that smile. 

first dinner

Last night was the first dinner my buddy ate that I didn't have to grind something up.  We've been at this stand still for months and have made no progress as far as eating more solid food.  I was under the impression that he was physically unable to eat and swallow certain textures.  Turns out I was wrong.

We had a double team - OT and Speech Therapist - come over for lunch to see how my buddy was chewing and see if they could help.  I made a smorgasbord of food he usually spits out.  And wouldn't you know, my buddy was able to eat it all. 

Turns out he wanted a fork of his own.

What I thought was a physical issue turns out to be a behavioral issue.  There are certain foods he won't touch if you just put it on his tray and let him at it.  He'll simply put them in his mouth, spit them out, and throw any remaining food straight to the floor.  But put it in a bowl and help him stab at it with a fork... suddenly he eats.

Of course, you have to hold the bowl still so he doesn't toss that to the ground as well.  And those bowls with suction on the bottom are no match for his super-human strength. 

While we are on the subject of behavioral issues, I fear I may be in for it with my buddy.  When he gets frustrated, he started bumping his head on the ground.  And when he gets really upsets he "freaks out" - flailing his arms, forgetting to breath, turning purple, mouth wide open, and a crazed look in his eye.  I feel like 18 months is too young for that.

The hardest part of it all is I don't know how much I can expect of him.  When I tell him something, it's hard to tell if he is just ignoring me or truly doesn't understand.  I have high hopes for him and treat and speak to him like I would any other child, but I know that he is not "typical" and I can't expect him to be on target for all aspects of his development.

I guess for now all I can do is give the boy a fork.