December 27, 2011

Mrs. Nice Pants

No more Mrs. Nice Pants.  My buddy's teachers are about to see the Mama and Papa Bear come out of hibernation.  I've been concerned about the amount of speech therapy my buddy was receiving at school.  We recently had an informal meeting with his teacher and speech therapist about it and the response we got was - we're still getting to know him.

My mom is in town and she also happens to be a retired Special Education Teacher.  We talked about what my buddy was receiving - she couldn't believe how little speech therapy he was getting.   I also showed her the IEP (which they never reviewed with me, just stuck into my buddy's backpack one day) and apparently a lot of the goals are poor.

The most frustrating thing as a parent is I don't speak special ed.  I am more than willing to fight for what he needs, but I need a professional to help me figure out what he needs.  Silly me thought his teacher and team of specialists would be there for me and want to do everything they can to help my buddy succeed. 

The good news is my mom still has many friends in the education field and we will have no problem finding an advocate to help us.  She will know the proper words to use and what is reasonable to ask for... and fight for if it comes to that.

I really wanted to have a positive experience our first year in school with no battles.  I assumed the school would offer everything they could giving my buddy the opportunity he needs to grow and learn.  The rose colored glasses are off.

December 12, 2011


My buddy had his first parent teacher conference last week.  I have gotten very used to having my buddy assessed by Birth to 3.  I never expect him to perform above age range and I am thrilled when he does something on a typical timeline.  Birth to 3 concentrated on areas he needed help with in a more clinical way.

I'm not sure if my buddy's preschool teacher is more lenient or she is looking at him in a very different light.  There are 30 different Performance Standards in which he has been observed and assessed on.  Only 3 of those he performed at a less than 3 year old range.  Of course those all dealt with communication.  Over half he was rated at a 3 year old level and three areas he performs at a 4 year old level.

Of course my favorite is 'Shows empathy and caring for others.'  He has been known to approach crying children and give them a gentle rub on the back - even if he is the reason they are crying.

I don't want to underestimate my buddy and I think he is doing great at school, but the more I think about his progress report, the more I wonder about it.  At first I was over the moon.  Finally a report that shows how amazing he is. 

I don't know a lot about typical behavior of a 3 year old, but I'd be willing to bet most can 'use words to express emotions or feelings' and 'sustains attention to task' and 'uses writing to convey meaning' at a higher level than my buddy.  Yet he was assessed at a 3 year old level in all these areas. 

I know in the big picture none of these things matter.  My buddy will make it through school fine - doing better in some areas than other areas.  As long as he continues to show empathy and caring for others, I'm fine with whatever assessments come our way.

November 10, 2011


My buddy, aside from the extra chromosome, is a healthy little boy.  Yet that extra chromosome demands so many different doctors appointments.  As a newborn we saw a heart doctor for an echo-cardiogram and a pulminologist to try and figure out why he couldn't kick the oxygen.  We were so relieved that my buddy didn't need open heart surgery or a feeding tube or any other surgery for that matter.

He has had about 9 complete blood counts done.  Imagine holding down a screaming child with super chubby arms surrounded by at least 3 nurses attempting to find a vein.  The easiest one was done when he was born.  They took him down to the nursery and when I headed down there to see how he was doing, I almost lost my cool on some nurse.  My buddy was lying under the french fry warmer with one of those blue surgical sheets over his stomach with the opening over his belly button.  He was lying with both arms and legs out not moving at all.  Turns out he liked the heat and fell fast asleep.  They opened his belly button and got the blood they needed and closed it up like new.

We've seen an eye doctor 3 times, had 8 hearing tests all followed by appointments with the ENT.  My buddy saw a chiropractor for a while to help with misalignment that was causing excessive spit up.  All this is on top of the usual pediatrician appointments.  For a while there it felt like we were always at some doctor or another.  My buddy does tend to get sick often and he usually doesn't kick it until it turns into something major and he hits the antibiotics. 

I am heading to the CT Down Syndrome Congress annual convention in a few days.  I will learn about even more tests and procedures that are now being recommended.  We have been very fortunate that my buddy has no major eating issues or health concerns.  I want my buddy to be as healthy as he can be.  But some times I just want to whine a big, "I don't wanna," when I think about adding another test to the list.

October 18, 2011


My buddy is officially a preschooler.  He loves school and is excited in the morning to go.  I have to physically restrain him just to give a quick kiss before he runs into the building.  He could care less that Mommy is leaving.  I was emotionally fine on the first day.  I knew he wouldn't cry and he would have fun.  It's right up his alley - a room of fun toys and friends to share them with.

As the days go by - Ok so it's only been 3 days but that's not the point - I'm having a harder and harder time with it.  All the parents get a sheet home that says what the story was, what songs they sang, what activities they did and what snack was.  But that is all I know.  My buddy can't tell me anything about what he did.  I have no idea if he tried the snack, ate any of it, drank anything.  Did he sit for circle time?  Has he been listening?  Do the other kids play with him?  Is he trying to communicate with anyone or is he quiet?

I don't know if I'm being Overprotective Mom by wanting to know all of this.  I know it's only 2.5 hours and I don't expect the teacher to give me a blow by blow but I get very little information.

I also didn't expect so much of preschool to be above my buddy.  I know that sounds crazy.  He has Down syndrome and will never be on target with his peers.  I also know that when he is little is the closest he will ever be to being on target - the gap will only widen as he gets older.

When I think about the class having a discussion of their neighborhood I can't help thinking about the obvious - my buddy can't talk so he can't really be a part of the discussion.  But on top of that, I don't think he even knows what a neighborhood is.  They drew pictures of their favorite toy.  Aside from the fact that there is no picture drawing for my buddy, I don't think he could answer (even using signs) if asked what his favorite toy is.  They have to bring in something from home to share with the class.  Sure I can stick a toy in his backpack, but how is he going to share it with the other kids?  Other than naming it (with signs) and possibly saying the color, (with signs) that's about all he has.

I need to just let it go.  My buddy loves school and that should be enough for me.

October 13, 2011

end of an era

Birth to 3 has been coming to my house since my buddy was 4 weeks old.  There have been small changes and additions to our team but for the most part they've supported, educated, and worked my buddy to the bone for the past 3 years.  When he hears that knock, his face lights up and he goes running to the door.

Monkey bear has been known to play speech therapy or physical therapy - games that I'm sure aren't in every house!  She studied the therapists and helped with encouraging words then puts her babies through the trenches.

There have been times when I didn't want someone coming over twice a week every week and felt like my child wasn't my own.  It's tough having the 'homework' and list of exercises I should be doing with my buddy.  I always dreaded the report of, "he hasn't done anything new."  But I know with all my heart that he would never be doing all the things he is able to do without their guidance and knowledge.

Our Birth to 3 team came the other day for a goodbye party.  Since it was a party, monkey bear insisted I bake a cake.  They brought balloons and presents - even one for monkey bear for being such a good helper.  They all ate cake even though it was 9:30am.  There were hugs all around.  My buddy made two rounds with the hugs and gave out some kisses as well.  It was bittersweet. 

October 3, 2011


We survived and maybe even flourished on our Disney vacation.  Both the kids were amazing.  I had some doubts and reservations before leaving.  I just can't believe how good they did.

A friend lent us a portable DVD player which saved the airplane flight.  A few episodes of Dora and Signing Time and my buddy (who was strapped into his car seat to prevent escape) was entertained and quiet.  Monkey bear was so excited to be on an airplane - and eating Jelly Bellies.  And what child doesn't love a bus ride?  Disney had its share of buses for us to ride.

Our hotel was beautiful and Nana and Grampa were there to help.  My buddy loved the free reign of running through the bedrooms, kitchen, and living room.  He quickly discovered that he could climb into the jacuzzi tub and turn the water on all by himself.  I quickly discovered the door handles were just tricky enough that he couldn't open them himself.

Disney is so good about guests with special needs.  We got a pass that allowed us to skip almost all the lines.  We never waited more than maybe 10 minutes for anything.  Which is a good thing because at about 8 minutes my buddy has had enough.  At about 9 minutes my arms are about to fall off holding him and the sweat from his little furnace body in the hot FL weather is about too much to bear.  Good thing there were 4 adults.

Monkey bear was overwhelmed when we first stepped into the Magic Kingdom.  She refused to smile, talk, or get out of the stroller.  We went on Small World and she lifted her head in interest.  We went on Peter Pan and she said, "Can we ride that again?"  And we did.  Monkey bear loved all the rides and loved hugging each character she met.  At first she wasn't sure.  She kept asking me, "Are they real?"  "Of course they are."

When my buddy first spied Mickey Mouse (after we skipped the gigantic line) he went running right into his arms with the biggest smile on his face.  His favorite ride was the carousel.  I truly love everything Disney, but this carousel is awful.  It is slow and only spins around 3 times.  But if we walked by it, my buddy would sign 'horse' and point and throw a fit if we didn't ride. 

It was really hot and the kids would melt around 2pm each day.  My buddy woke from his stroller nap drenched in sweat.  But a short stroll from our room was a pool with a playground next to it.  We stayed up late one night for the light parade.  Monkey bear was in love.  She sat on my shoulders and clapped, pointed, and waved.

The only bad thing is we are in the post vacation slump.  Monkey bear wants to know why we have to live in CT and why we don't live in Disney World.  My buddy will randomly throw himself on the ground in protest.  I imagine he is thinking, "hey where's all the entertainment?"

September 13, 2011


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. 

September 2, 2011

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.

August 24, 2011

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.

August 20, 2011

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.

August 18, 2011

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."

August 1, 2011


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.

July 11, 2011


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.

June 21, 2011


Today was the transition meeting for my buddy to enter preschool.  Our Birth to Three team was there to inform my buddy's teacher, program coordinator, occupational and speech therapist from the preschool where he stands in his development.  The preschool will use that information to set up an individual plan for him.  They asked some questions and answered the few questions we had.

In the beginning of October, we will go back for the PPT where his plan will be outlined.  Then my buddy will spend some time in the classroom with one of his Birth to Three providers while I hang in the hallway.  After some observation, his plan will be finalized and my buddy will be preschool bound mid-October.

It seems like so much for one 3 year old boy.  I am grateful that he will have so many opportunities.  I think about not so long ago when he would have been denied an education and more often than not, sent to an institution with no hope for his future.  I really hope that I never have to battle the school system like so many others have.  Perhaps it's naive of me, but I believe that most Special Ed teachers are there for the right reasons and do have my buddy's best interests at heart.  (Maybe having my Mom be a Special Ed teacher led me to that conclusion.)

Of course, I still have my concerns.  My buddy's safety being at the top of the list.  When we visited the classroom, they had the doors wide open.  There are so many bins to dump and things to throw and smaller toys than what I usually let him near.  I wonder if he will be able to communicate with his teacher (who only knows a small handful of sign language) and if he will not care or if it will lead to more frustration. 

For now it all seems like a lot to grasp.  I think I need to start making a list of questions to bring with me in October.  For some reason, I have this mental image of my buddy at school - he separates from me with no problem, is playing and having fun, and then all of a sudden... he wonders where Mama is and doesn't know what is going on or when I will be back and no one can understand him.  Who will hug and kiss him when he falls down?  The hardest part of parenting is letting go.

June 13, 2011


I am always amazed how 2 children who grow up in the same house can be so different.  Here are just a few examples:

Monkey bear can talk nonstop, yet she won't even say "Hi" to her friends.  My buddy has few words, yet he's the first to greet a stranger with an "Aaahhh" and a pat on the knee.

My buddy loves all things salty and monkey bear is a sweet loving girl.  She favors fruit and he loves his veggies.

Monkey bear slept through the night at 12 weeks and hasn't stopped since.  My buddy still wakes up more nights than he sleeps through.

My buddy can be covered head to toe in all sorts of dirt, grime, and food without noticing anything.  If monkey bear gets so much as a drip of ice cream in her dress, she must change instantly.

When we are out and about, Monkey bear sticks to my buddy for the emotional safety while he is busy running off on his own not caring if anyone is close by.

Monkey bear will push a baby in a swing for 15 minutes and love every minute.  My buddy loves a baby for about 27 seconds then hits him on the head.

My buddy wakes up with a smile and is off and running instantly.  Monkey bear wakes up grumpy and is "too tired to walk down the stairs."

The list goes on and on.  I wonder if there was another sibling if they would fall somewhere in the middle or if they'd find their own different. I  love watching their personalities emerge and trying to guess what they will be like as teenagers and adults. 

May 27, 2011

monkey toes

My buddy has this huge space between his big toe and all the rest.  It's one of those random physical traits of Down syndrome.  My buddy knows how to use his toes.  He uses that space as leverage and turns the big toe into an opposable thumb.  One of his favorite thing to do is to grab your fingers as you read him a book with that big toe.

My buddy uses his toes for stirring up a little extra trouble.  He can cling onto drawer pulls - climbing up dressers in a flash.  He can get a grip on the baby gate - luckily not climbing over quite yet.  You should see the toys he can manipulate with those toes.

I guess that's why my buddy hates shoes and socks so much.  It's hard to use primitive tools and swing from the vines when your monkey toes are covered up. 

I've been thinking lately about what joy my buddy brings to me and how much he has changed me.  I know I tend to complain a lot about the trouble he gets into and he does exhaust me on a daily basis, but he is so much more than that.  Monkey bear made me a Mommy and I will be eternally grateful for that.  My buddy made me a better person.

I have only stuck my (non-opposable) big toe into the lake of Down syndrome but already it has enriched me.  If I can reach one soon-to-be Mommy who gets the prenatal diagnosis and doesn't want anything to do with that kind of a baby...  I would tell her that it is more good than bad.  By a long shot.  When my buddy was born, a woman with a daughter with Ds told me that she celebrates and gets so excited when she hears that someone just had a child with Ds.  I, of course, thought she was a little wacko.  But now I see what she means.

My buddy has brightened my world.  I can't wait to see all that he has to give me.

May 16, 2011


I've been thinking lately about my buddy being delayed.  Most of the time I think about all he's accomplished and don't stress too much... except for when he flings his food in my face or hits a baby.  I know that he's not typical and worry about his lack of words but I try and take it in stride not focusing on the hard parts.

Something got me thinking about being delayed and what that really means.  My buddy's physical ability is so close to being on target, he understands so much and even though he can't talk he is amazing with sign language, and he has come so far.  I think where the delays are really becoming obvious is in his behavior and level of maturity. 

I can't stop myself from seeing how most 2 1/2 year olds act and doing that comparison dance.  My buddy can't stop himself from dumping... well... everything.  Plates of food, bins of toys, containers of blocks, a carefully built building.  He will pull the pacifier out of the mouth of every baby we encounter.  He climbs, wedges himself into small spots, and generally endangers his well being on a daily basis.  My buddy refuses to walk next to me and hold my hand.  I find myself carrying him or strapping him into a stroller all the time.  When my buddy decides to run off he will not stop unless you physically stop him.

It becomes this crazy mix of abilities.  My buddy can move like a 2 year old but with the impulse control of a 15 month old.  He has this wicked sense of humor yet he still bites.  He can put several signs together to have his needs met and at the same time has no clue that punching someone in the face hurts them. 

Sometimes I worry that I am super overprotective and that I hover over him too much.  I don't want my buddy to hurt others or himself and I know that he will if left to his own devices.  I hate that I have to follow him all around and can't just let him play on his own.  I dream about being one of those mom's at the playgroup or park that gets to sit and watch the kids play while chatting with the adults. 

One good thing about delays is he still has a sweet baby way about him.  My buddy loves snuggling in the rocking chair with me.  Nothing can calm him down better than Mommy's arms.  I plan on holding him in that rocking chair for as long as I can.

May 2, 2011

cave man

My buddy has many qualities that closely mirror our relatives of the stone age.  There is a lot of grunting and chest beating.  His diapers have been known to smell like a woolly mammoth.  Of course, he refuses to wear shoes.  Although, perhaps if I strapped animal pelts to his feet he might keep them on.

My buddy can take down prey - the ever illusive sistersaurus - with a mighty hair pull followed by clubbing with a blunt object.  Yes, he is a troglodyte in many ways.

His largest neanderthal similarity is in his table manners.  I have begun to lose count as to the number of plates of food I have cleaned off the floor.  I've tried every gizmo out there and none of them work for my buddy.  When he decides he is done or perhaps he just wants the milk he flung to the floor earlier, there is no winning.  I figure I have a few options.

I could go on like I am now but so far that's not working all that great for me.  I can eat my dinner cold after he eats and totally focus my energy on him making it a learning process and testing my patience at the same time.  I can just throw a few pieces on his tray and say to-the-heck with plates and forks and spoons... eat with your hands and be merry.  I could convince my mom to move in next door and come over for every meal and she can do the hard work while I eat in peace and quiet.  Oooooh... that one sounds good.

I suppose I can just accept that I am raising a cave man and the future Queen and start naming the ants. 

April 27, 2011

the other milestones

There are many milestones that parents look forward to and anticipate.  Then there are those other milestones.  Monkey bear has reached the talking back, name calling, sassy phase. 

I am very careful with the words I use around my kids.  I don't have a potty mouth in general and after being a nanny for 9 years, I learned how to avoid "bad" words.  Unfortunately, monkey bear has influences in her life other than me.  (imagine that!)  I have very high expectations of her and her behavior but I'm beginning to wonder how long I can keep her from calling people names. 

I'm also wondering how long I can keep my sanity with the negative behavior.  I don't want to punish her all day long, but I will not accept being spoken to that way or having her hurt my buddy.  Oh, the teenage years are going to be rough!

April 21, 2011


So I've been concerned about my buddy going to preschool for a while.  OK... more like obsessed.  I think I started about 6 months ago.  He still has 6 months to go before he starts school.  I wasn't sure if I really wanted him to go at all.  I know he is growing and maturing, but to me, he's still a baby.  I feel like I have no choice for his preschool.  For monkey bear we visited lots of schools, chose the one we liked and decided what time of day she would go and how many days a week.

Last week we went to an open house at my buddy's preschool.  It is housed in an elementary school that was beautiful and clean.  The woman who runs the program already had my buddy's paperwork and knew about him.  The classes are small with lots of typical peers and the teachers know sign language. I felt relieved and for the first time, actually excited about this next step.

I think the hardest part will be sending him 5 days a week.  Monkey bear will only be going 3 days a week and she's a year older.  At the same time, it will be so nice not to be his therapist anymore.  The pressure of Birth to 3 with four therapists all expecting me to work with him on a daily basis is a lot.

Next year will bring a lot of changes.  There will be the hustle of getting two kids to two different schools and somehow getting everyone lunch and naps.  And there will be me... letting go... just a little.

April 5, 2011


Dear Little Boy at the Library:

I am so sorry you were there when my buddy and I came to the library today.  You were so kind, coming right up to my buddy saying, "Hi" and introducing yourself.  You even invited my buddy to play at the train table with you.  My buddy, of course, ignored you and headed to the horses.  When you tried to play with him, he pushed the barn away from you.

After a short while, you did get a nice greeting from my buddy - the face push and growl.  It was done with a smile, so you took it in stride.  You were so excited when my buddy came over to the train table to join you.  Unfortunately, that excitement didn't last long as my buddy tried to swipe the one train you were playing with.  Oh, and the look on your face when he threw that train... let's just be glad he didn't hit you with it.

I'm sure you were relieved when we left after a short while.  I truly am sorry that my buddy got one last push in as I was trying to collect our things.  I hope you can forgive us and we can meet again under better circumstances.

With Deepest Regret,
That Mom

March 29, 2011


Most days I just enjoy my children and don't focus too much on what my buddy can't do.  But lately I can't stop thinking how I wish he could talk.  Sure he's got a couple of words but they aren't all that useful.  I worry that he will go years before really talking. 

Do I need to do more at home with him?  Do I need to increase his speech therapy?  Do I need to find a new therapist?  Is there anything that I can do?  What if there was some other approach I don't know about that could get amazing results?

I know nothing about teaching someone to talk.  Monkey bear talked early and often, although she refused to talk in front of anyone other than me.  My buddy has exceeded my expectations with his walking, climbing and running.  I remember many months just trying to get him to sit up on his own.

We are going to start a picture system with him that will hopefully reduce some of his frustration... but probably not mine.  I want to know what is going on in his head.  He is so funny and does the oddest things.  Monkey bear always asks, "Why does he do that?"  My buddy is the only one that can answer that and he isn't talking.

March 10, 2011


I love it when little milestones are met without even trying.  When my buddy was a baby, we spent so much time doing exercises and pushing him constantly.  I noticed every little thing he did.  I suppose there is so much less going on with a baby than a toddler so it's easy to miss them now.  I've also lowered my standards for myself and spend a lot more time playing and goofing off.

Here's a list of mini-milestones my buddy's met recently:

*  No longer going through 6 bibs a day - down to about 2
*  I can take my hand off his plate for 30 seconds without him dumping it instantly
*  Will listen to "No" if you are standing right next to him - don't have to physically remove him
*  He can walk up the stairs by himself just holding onto the railing
*  Once in a while he'll hold my hand when we are out and actually walk the way I want him to
*  He looks up in the tub so the water doesn't pour down his face
*  No more open mouth, full tongue kisses 

And the best one of them all...

*  He signs "love you" and blows kisses every naptime and bedtime

March 1, 2011


My buddy is the friendliest little guy around.  Almost to a fault.  He is never more happy than when surrounded by a gaggle of kids.  My buddy, if he had his way, would touch each kid on the head, face, or belly while dolling out hugs to any takers.  Of course he would alternate a gentle touch with a love pat.  And by love pat, I mean a smack to the face or a push hard enough to knock someone down.

I love my buddy's love for others and really don't want to change that about him.  I love that he is forgiving and holds no grudges.  But he can't walk around slugging other kids and knocking them down.  If you prompt my buddy to be "nice" or "gentle" he will listen... at least until the urge to hit is too strong.  I don't think he does it to hurt.  My buddy is genuinely surprised when a baby cries after meeting his left hook.

I'm not sure how to approach this behavior.  Part of me just wants to let his teachers deal with it when he goes to preschool, but I'm pretty sure that isn't the right answer.  I don't want to adopt a "keep your hands to yourself" rule.  I think at the age of 2 he should be able to touch his friends.  I guess I will just have to keep repeating my mantra of "be nice - no hitting" and hope that at some point it sinks in.   I do know that there are far worse things than an overly friendly little boy.

February 24, 2011

random thoughts

While I am too sleep deprived to do any deep thinking or put together long ideas, I do have a few questions and thoughts that have gone unanswered.  My first being - who would have thought that almost 4 years into motherhood and I am still so tired.  Why is it that I cannot get more than 2 consecutive nights of sleep?  I have had this eye twitch for about 3 weeks now and I am going to have to take drastic measures soon.

What did my husband do to this keyboard in law school that makes it so you have to pound on the 'k' key?

Why do they poop as soon as you put a fresh diaper on?

How can I dream of being away from my kids and having a minute to myself and when I finally get away for a minute, I don't know what to do with myself?  Didn't I used to have a life and spend all sorts of time alone? 

Is it really possible when my buddy goes to preschool in the fall that he won't jump from table tops, dump every container he can get his hands on, and eat random things?  Is school really my buddy-proof? 

How come Daddy can't straighten the covers and wake up with monkey bear in the morning?  Why does she demand only me?

What is it about escaping that is so intriguing to my buddy?  Isn't the room full of toys and kids enough for him?

How can my buddy claw your eyeball out when he has only a tiny sliver of white on his fingernails?

Will the I-look-4-months-pregnant belly flab ever go away or will I always have to tuck it into my pants?  Is there really any way to lose weight without being hungry?  Why oh why did I waste my teenage years hating my cellulite-free body?  I should have been walking around in a bikini showing that thang off.

What will life be like when both kids are in school?  How will I define myself when Mommy is no longer the center of their life?

February 16, 2011


There is the taste of freedom in my mouth.  It's dawned upon me lately that I no longer have a baby hanging off various body parts, spitting up on any clean shirt I put on and making hours disappear with every diaper change and feeding.  I can leave the kids with Daddy without worry or hesitation.  I am stumbling out of the haze and into the light. 

I may be drunk with the freedom.  I've found myself curling my hair, applying nail polish and reading novel after novel.  I suddenly have free time.  Muffins have been baked and Hallmark TV movies have been watched.

My buddy is still a handful - don't get me wrong.  But I can sit him down with a cup of milk and a bowl of crackers and he can feed himself while I enjoy a cup of tea.  I napped on the couch while monkey bear decorated Valentine's.  Next thing you know I'll spend all day eating Bonbons. 

Having two miscarriages was devastating, but maybe this is how my life and my family were meant to be.

February 2, 2011


My buddy loves to dance.  He has different dances he does to different songs.  One personal favorite is the Diaper Dance (performed to Baby Signing Time).  There is an abundance of butt in and out and all around.  Monkey bear is into music from an old kids show - Hi 5.  They have a song called 'Robot #1'.  I do a mean robot dance (this is funny enough on its own considering I cut my head open on the chair rail picking food up off the ground just today).  My buddy has his own version of the robot.  Hysterical!

Monkey bear's dancing usually involves lots of spinning around and sticking her leg out.  It's the same no matter what song is on.  And it's never in time to the music.  I think my dreams of living the life of a professional dancer through her is out.

One of my favorite qualities of my buddy is you can see every thought and feeling all over his face.  He is truly present in every moment.  Something I think most of us could use a little more of.  When my buddy hears a song that is in need of some tail shaking, he drops the toy he's playing with and dances with wild abandon.  The pure joy on his face is infectious.

January 31, 2011


My buddy does not play well with others.  Monkey bear had a preschool friend over for the first time today.  Her friend has a little baby brother.  He is now traumatized by my buddy.  Not two minutes after he was out of the carseat, my buddy shouted in his face and bashed him in the chest.  Immediate baby screams.  His mom couldn't believe baby's reaction - he has two older sisters who are loud and in his face all the time.  I told her all babies react the same to my buddy.

My buddy continued on to hit monkey bear's friend in the head, throw any toy he could get his hands on at the baby, as well as growl in the baby's face several more times.  In between this wonderful display, he threw himself down screaming because the wrong music was playing and again because I wouldn't put on a TV show for him.

I spent the whole time being a referee and trying my best to get him to stop the shouting.  It wasn't really the first impression I wanted to give this mom.  In his defense, last night was not a good night sleep and he may (or may not) be coming down with something.

My buddy is becoming increasingly frustrated these days.  He demands that the world goes his way - or watch out.  He understands so much more than he can communicate.  As his frustration rises, so does mine.  I"m sure the lack of sleep (for both of us) doesn't help.  I'm hoping we can help him with some other forms of communication so he can express himself better.

January 24, 2011


I really am grateful for this life I am allowed to live.  I tend to complain a bit, but when it comes right down to it I have never been happier in my life.

We are so lucky to have two beautiful, healthy children.  My buddy could have had so many health complications but (knock on wood) we've avoided the major ones so far.  It can be easy to focus on what he cannot do, but the things he can do are amazing. 

I am fortunate that I get to stay at home with my kids.  I can choose if it will be a muffin making house cleaning kind of a day or one where no toys get picked up and lots of books are read.  I try my best to save money where I can and keep my eyes open for little ways to make money.  I haven't come across any good making money options.  The last one I googled - becoming a surrogate - had a big payout, but just a small disclaimer I couldn't get past:  "willing to undergo abortion at the request of the parents if the pregnancy involves genetic complications."

I think this would have offended me even before I gave birth to a "genetic complication".  I'm trying in little ways to get the word out that Down syndrome isn't a thing to be feared.  Maybe some day I'll do more but for now the kids need me.

So for today, I'm just living life and focusing on the joy my two kids bring me.  They have changed me more than I ever thought they could.

January 19, 2011


Monkey bear is into fashion.  I'm not sure where she gets it, but I do know it's not from me.  My clothes scream, "please don't notice me."  Any attempts I made at putting together an outfit in my youth consisted of copying someone else's look.

Monkey bear gets out of bed and heads straight for the dresser in the morning..  It's never just a shirt and pants.  There are many layers to each look - pants, long sleeved shirt, dress, extra skirt, and just the right socks.  Usually about the time I am in the shower the outfit is deemed, "not quite right" and she is allowed to change. 

Then there is story time in bed at night.  You can't just tell a story.  Each character has to have a specific outfit - description provided by monkey bear.  There are many dresses and fancy shoes that sparkle and don't forget the hat.

When we are at Target we spend some time strolling down the toy isle.  Never once has monkey bear asked for a toy.  Then we hit the clothing racks and she wants "just one new shirt ... please."  When the bag of hand-me-downs comes from her cousin you would think it was Christmas morning.

It's amazing how girly one can become with no real role model.  I'm afraid to see what the teenage years will bring.

January 10, 2011


When your child does not have special needs, the term that floats around is typical.  I have a hard time thinking of us as not typical.  Today, for example, was just a typical day in the life of a stay at home mom:

Everyone was dressed, fed, teeth brushed and decked out in winter wear ready for a much needed trip to the grocery store.  I strapped my buddy in and went to turn the car on ... it wouldn't start.  After a quick call to my car guy (aka. Grampa) we headed inside to call roadside assistance. 

Once the car was working it was lunch and naptime.  I spent naptime on computer duty.  See my buddy likes to throw things at the computer when he isn't able to climb up onto the desk to pound on it with his fists.  So the desktop bid its final goodbye.  Luckily we have the laptop from law school.  Unfortunately, it's up to me to transfer data - the most important being iTunes.

There are nights my buddy won't eat anything unless distracted by his favorite tunes.  There went my alone time with monkey bear... straight to the computer.

Soon enough it was time for the grocery store.  I started the car before I put anyone's coat on and we were on our way.  While walking through the parking lot, monkey bear fell and scraped her knee.  Inside the grocery store, I strapped my buddy into the cart and examined the knee.  We were in need of a bandaid.  Monkey bear rode in the cart and we headed straight for the first aid.  Once a Kailan bandaid was applied, I thought we were in the clear... oh so wrong.  Monkey bear declared she could not walk.

The only carriage known to man that my buddy cannot wiggle his way out of is the front of a grocery cart.  The strap is high enough when added to the restricted mobility of the leg holes.  So in order for monkey bear and her hurt knee to sit, I had to push them in one cart while dragging another cart behind me for the groceries.  Have I mentioned it was a BIG shopping trip?

Halfway through the store after her mood had been brightened with ham and cheese and the promise of whatever kind of ice cream she wanted, monkey bear decided she could walk after all.  I did the ol' carriage switcharoo and we cruised through the rest of the store with a much lightened load.

Once home, I unloaded the groceries while my buddy put a hat on the cat.  That's when I noticed the poop smell wasn't coming from the litter box, but from the furry bottom of our furry friend.  Once that mess was cleaned, the TV went on so Mommy could make dinner.  My buddy has just discovered the TV.  He is in love with 'Baby Signing Time' and requests it with fevered grunts and many signs.  Fear ye who puts on a different show.

Home-made pizza.  Sounds like a nice easy dinner.  One pizza with butternut squash sauce, pepperoni and olives, another with half broccoli and a hint of cheese and half pepperoni and lots of cheese.  Oh and a whole separate meal for monkey bear who only eats pizza the following day cold.  Then there was the poopey diaper in the middle of all that along with every toy known to man spread out on the living room floor.

All I've got to say is thank goodness I'm a stickler for bedtime and they are out by 7:30pm because I don't think I'd make it much longer. 

I guess my point is that while my buddy makes life a little harder, it really isn't so different from anyone else.

January 4, 2011


I had a check-up at the doctor's today - on a side note:  What doctor's office does not carry People magazine?  Don't these people know that I rarely get away from the kids and that 10 minute wait is some precious me-time in which increasing my celebrity knowledge is crucial?

Anyway, I get sent across the street to the hospital to have some bloodwork done.  This is the same hospital where my buddy was born and spent 2 long weeks there while I traveled back and forth trying desperately to care for both my babes.  My usual response upon walking into the lobby is sobbing.  All the emotions of that crazy time come flooding back and I have a hard time controlling myself.

Today, I made progress.  I was preparing myself for the emotional attack while walking up the sidewalk.  Wouldn't you know, I walked in, paused for a moment, and felt nothing.  It was just a hospital lobby.  There was no grief attached to it.  No remorse or could-have-beens. 

I have always loved my buddy with every fiber of my being, but today I realized that I accept him.  I have come to terms with the words that used to haunt me:  Down syndrome.  It is no longer a scary place where people wear mismatched sweat outfits and get stared at everywhere they go.  It is a place where I am proud and where my buddy is the mayor and all who see him love him.