frustration

We had a few sweet weeks where my buddy was communicating well, eating at the big table, happy and (almost) behaving.  He was also sleeping through the night.  Ahhhhh... it was so nice.  Needless to say, we aren't there anymore. 

My buddy has reached max-frustration level.  I really don't know what to do for him.  There are several things that can set him off like when the music in the car isn't what he wants.  If we are out for a walk and monkey bear gets too far ahead of him.  When he wants to watch TV and it's turned off.  And, of course, anytime I say, "no". 

His reaction these days is to throw himself on the ground while complaining.  My buddy will also bang his head on the ground or hit himself in the head.  And there is no shortage of throwing and screaming.  He doesn't want to hear anything you have to say and the only thing I can do is just hug him.  I understand that this is typical behavior in younger kids but it just more painful to watch your almost 3 year old acting this way.

Some days he really tries to tell me things, but even with the signs he can be hard to understand.  My buddy says only the ending sound to words.  So horse and shoes sounds the same.  As does bike, walk, and truck.  Those times when he tries to tell me something new and I actually get it, we are both so proud.

The latest manifestation is his refusal to eat anything that isn't a cracker.  I make my buddy a meal - one that he typically loves and would eat every last bite of - he will nibble a little then spit it out and throw it across the room.  Then he says, "eat" and does his little, "hmmmmmm" like he is thinking of what he wants to eat.  The only time he does eat is when I get him a snack and he sits down on the ground in front of the TV.  (I know ... mother-of-the-year award here I come.)

It's been about a week with no fruit, no protein, little veges, and lots of milk and crackers.  I can't even get my buddy to eat a vitamin.  I've hear so many moms say, "Jimmy won't graduate High School doing (insert undesired behavior here)."  Meaning, don't sweat it because it will pass just like everything eventually does. But I can picture my buddy being 18 and sitting in front of the TV eating crackers.

Do I take the pressure off and just let him eat only crackers hoping he'll change his mind and join us for a meal?  Do I get super strict and only offer him food if he is sitting at the table?  Does his high chair pulled up to the table not really work for him?   Maybe there is nothing different I can do. 

open house

This afternoon was the open house at my buddy's soon-to-be preschool.  It was an informal 30 minute meet the teacher/other kids/fill out paperwork kind of a thing.  As we entered the classroom, most parents were sitting down in pint sized chairs filling out all necessary papers so their kids can start school in 4 days.  Let's just say I was not one of those parents casually checking boxes while my child played nicely or sat next to me and colored.  You could find me with the red folder tucked under my arm stopping my buddy from running out the door, playing in the toilet, dumping all containers, etc.  At least they don't need my information for a few more weeks.

I was slightly relaxed and optimistic about my buddy starting preschool in October... until today.  I felt like I was in a movie where the heroine is trapped and looks in every direction seeing more and more danger with no escape.

There was a nice selection of items that my buddy can use against himself - scissors, sharpened pencils, play coins just the right size to choke on.  Pan to the bathroom with a door that doesn't close all the way.  Imagine my buddy with his hands in the toilet with no lid.  Oh, and while your imagination is working, feel free to add his body covered in the markers that are accessible.

My buddy will have a field day with the teacher's desk, the computer and books with paper pages.  I can't even think about the poor kid who gets one of those ginormous wooden blocks smashed into his head.  After a while I had to stop looking.  I started the mantra: he's not the first kid with Down syndrome to go to preschool.  They must know what they are doing.

I'll do my best to warn them at our PPT next month.  Just look out for the innocent 3 year old who happens to be next to my buddy when the urge to throw is too big to ignore.  Never take your eyes off my buddy and just assume 80% of his behavior will be inappropriate.

big sister

Monkey bear has just realized that she is the big sister.  She's only 2 years and 10 months behind on that one.  I guess when your little brother enters your life when you are 15 months old you can hardly equate your still-baby-self to a big sister.  I think all this time monkey bear has thought of them as equals.

It all started a month ago when she was able to help my buddy climb onto a bed that was up high.  It was the first time she had ever lifted him.  Monkey bear now tells me to be quiet so she can be the big sister and teach him.  When we are out for walks and my buddy sees a bike and says, "aaaack," monkey bears says, "b it starts with b ... can you say bbbbike?"

Monkey bear can also be seen carrying my buddy down the hallway.  This is really amusing.  Monkey bear is maybe 5 inches taller and weighs 37lbs to his 35lbs.  She gets her arms around him from behind and leans back.  I'm amazed that she can make it down the hallway with him in her arms.  But she does... and he loves it.

The funny part is that she's been the most amazing big sister all along.  She spent hours lying next to him for tummy time, did countless funny faces to get him to stay sitting, and tirelessly walked up and down the hallway holding his hands teaching him to walk.  I think that more than makes up for the fact that she never picked him up as a baby or carried him around.

the leash

My buddy has a leash.  OK so it's this super cute backpack that has a tether attached to it, but to me it's the same.  I never in my life, even after having kids, thought I'd be a mom who had to put their kid on a leash.  I mean, who has a kid who can't walk next to them in a public place?  Me.

I bought it mostly for when we go to Disney next month.  I imagine I won't feel foolish using it there.  And if I do, I can make my parents 'walk' my buddy while I stroll behind pretending I don't know them.

My buddy hasn't quite gotten the hang of it yet.  At times he does really well- I remind him that he needs to walk next to Mommy and it's not as bad.  Then there are those times where it's like walking a 36 pound puppy who suddenly sees a squirrel.  I fear the plastic hook won't hold.  Oh and I do apologize to those individuals we clotheslined.

Unfortunately my choices are limited.  I can keep him strapped into his stroller when we are, say at at the mall on a busy weekend day.  My buddy will get no exercise and learn no skills on how to manage oneself in a crowd.  Or I can 'walk' him trying to teach him to stay next to the stroller and not sign "go" and then run.

In the past, you could find me abandoning the stroller and chasing my buddy while calling to monkey bear to make sure she was safe.  She does enjoy the chase and is usually right there with me.  I figure that scenario (which happened every time I let my buddy loose) is just about as embarrassing as putting my buddy on a leash.

less trouble

Out of nowhere my buddy has become less trouble.  I suppose a more accurate description would be that his trouble has matured.  But more on that later.  First let's enjoy the good parts:

My buddy kept his shoes and socks on for the 5 minute ride to the grocery store.  First time ever!

He is able to walk through the parking lot holding my hand without throwing himself down on the ground in protest of holding my hand and walking the direction I want him to.

My buddy came up to me and said, "aack" without signing anything.  Meaning - I'm hungry, can I please have a snack.  He actually knew his needs and communicated them to me using only words.

When I say "wait" in the store (on those rare occasions when he is allowed out of the cart) he actually pauses for a second or two before taking off.

So, my buddy has really matured and seems to understand so much more.  He gets in the car on a summer afternoon and signs "hot".  This may not mean much to you, but to me he is initiating conversation and giving me a little peek of what is going on in that busy mind of his.

Of course, there is another level of trouble waiting at every turn.  My buddy now needs to have every toy that monkey bear is playing with.  He grabs onto it with all his might - and that is a lot of might - and throws himself backwards until he is laying down using his whole body to pull.  That boy has a good grasp of leverage and physics.  My buddy has also taken to chasing monkey bear around the house trying to throw things at her head.

My buddy continues to be our greatest source of entertainment and laughs.  Just the other day monkey bear said, "I never want my buddy to grow up because he is just so silly when he is 2."

mothering

I was talking to my husband the other night and we got chatting about the past.  I was saying how I never knew what I wanted to "be" when I grew up... and I still don't.  I went through countless majors in college only to graduate with a degree I knew I would never use just to have a degree.  Even my childhood scrap book is filled with ambitions like "I want to be a gymnastics person who gets first place sometimes."  Oh yeah, I dreamed big.

Then my husband had one of those rare moments of insight.  "You're supposed to be a Mom," he said.

Ohhhh.  That's why this time in my life feels so right.  I can guarantee that monkey bear will grow out of the mothering need long before my buddy does.  I'd by lying if I said that I wasn't a little excited about having my buddy hanging out with me for many years.  I've been searching for a great reason never to have to find a job ever again. 

I will try my best to raise him to be as independent as he can.  The truth of that is living in the guest house out back may be it for him.  (Not that we have a guest house, mind you)  I really am OK with that - assuming he is OK with it as well. 

I love being mom.  I will mother them as long as they will let me.

guilt

Things I currently feel guilty about (in no particular order):

*  My buddy has never helped me cook... he's not even allowed in the kitchen.

*  Monkey bear can only do art projects when my buddy is asleep.

*  My buddy is constantly being strapped into something.  I have a 7 minute window of patience chasing him around a store.

*  Monkey bear has to leave whenever my buddy (or I) have reached our limit even if she isn't ready to go.

*  My buddy has never painted or used markers and rarely is allowed to color with crayons.

*  Monkey bear always has to wear her shoes even though my buddy's shoes have a permanent spot in the diaper bag.

*  My buddy will try and "tell" me something and I have no idea what he is trying to say.