December 28, 2012


I try and approach parenthood with a heavy dose of understanding.  If one of the kids is acting out I try and think of how they may be feeling and what kind of outside forces may be at work as well.  Sometimes it is as simple as a good snack to refuel.  Other times its a bit more complicated like really missing "Mommy time" or having Daddy be away.  I want to raise little individual people not just pods who will do everything exactly as I say so I try and listen and work with them as much as possible.

Unfortunately for my buddy I just don't understand him.  I cannot figure him out.  When he sees a baby and pushes them down, does he have any idea that he can hurt them and always scares them?  I tell him every time.

When I tell him iPad time is over and he says over and over "iPad.... iPad.. .iPad...", does he just hope he will wear me down?  Does he understand what I am saying?

Why does he have to spit the food out of his mouth just because he wants a drink of milk?

Every time he throws, he sits in time out.  Yet he still constantly throws things.

Is there some sort of crazy logic known only to him or does he just act on impulse?

Why the need to hug every male over the age of 50?

I know my buddy gets frustrated because he can't tell me what he wants.  But I honestly believe that half the time he doesn't even know what he wants.  Or maybe he does and I just truly don't get him. 

December 4, 2012

oh baby

A list of several things I had forgotten about babies:

*  they smell so good

*  sneezing with a mouth of pureed food is quite messy

*  bath time is actually fun and something to look forward to

*  it hurts so much when they grab a fistful of hair on the nape of your neck

*  how they look at you, pause for a moment and then give that huge gummy smile

*  just how hard it can be to cook dinner with a baby on your hip

*  how you would do anything to hear that baby belly laugh

*  those chubby cheeks beg to be kissed

*  that baby belly demands to be eaten

*  how every time you pick them up from the crib you just can't help but hold them tight

November 30, 2012


I am the kind of person that always thinks the best of people.  I find myself making excuses for why they might have acted in a not nice way.  But sometimes I come across someone that rubs me the wrong way.  After having a child with Down syndrome, those not so understanding ones really pop out at you.

When I pick monkey bear up, a group of adults mill about waiting for the doors to be unlocked.  I usually have rara in my arms and tend to keep to myself.  There is a grandmother there.  English is not her first language and she is a bit pushy. When she deems the weather is cold, she will come over and pull rara's sleeve over her fingers saying, "Oh she cold." The second time I met her, she told me what college all her kids had gone to and what amazing jobs they all had.

The other day was a half day and my buddy had no preschool so he came with me for parent pick up.  My buddy approached this grandmother and started smiling and chatting with her.  She asked me how old he was.  Then she said, with a very concerned look on her face, "He no talk?"  "No, not yet," with a smile on my face.  Then she said, "He born that way?"  I wasn't quite sure how to respond, but I really wanted the conversation to end so I just said, "Yes."  Ordinarily I would have mentioned the words Down syndrome and very positively said he will talk some day.  But with her, I just got the feeling it wouldn't matter.

On the flip side of that are the gems of people who are perfect around my buddy.  There is a receptionist at our doctor's office - we seem to be there a lot so they know us by name.  My buddy loves her.  He goes right up to her window, stands on his tippy toes until she opens it and chats her up.  She just talks right back as if he is having a real conversation with her.  The smile he gets on his face could melt any cold heart out there.

November 29, 2012

stepping it up

Lately I have been trying to take things up a notch with my buddy. It can be so easy to let time pass without challenging him to step out of his comfort zone. We have been working on dressing and undressing independently as well as potty training and walking (a little) in a store without running away.

I would love to say that he has risen to the occasion, but resisting would be a more accurate term. He stood in front of a full bubbly bath, really wanting to go in, with his pants halfway off refusing to finish the job. It can be really frustrating, but it can also be rewarding. When he actually gets himself dressed, he looks so proud and excited. For me, I feel the most important thing I can do for him is encourage him to care for himself independently.

Potty training is another story. My buddy is not to be trusted in the bathroom. How am I supposed to make that work? He is not too thrilled about trying and I really have not pushed that hard. I don't think he is able to tell me when he has to go and the thought of taking him into a public bathroom skeeves me out.

My buddy has gotten really good at working for a reward. I've been trying to get a picture for our Christmas card. He actually sat for several pictures when I told him he could play with the iPad for good behavior. I can see little glimpses of maturity and it makes me so excited. I can't wait to do big kid things with him. 

November 2, 2012


Some days I am bummed that my buddy doesn't anticipate much.  When a holiday is approaching, half the fun for me is getting excited at the good times that we are soon to have.  Monkey bear and I spent weeks talking about different Halloween costumes and while I wouldn't have chosen what she did, I appreciate her ability to make the holiday her own.  My buddy could care less about a costume and wasn't excited at all when we talked about Trick or Treating.  Although, when he is in the moment it is magical.  I guess we could all take some lessons on being present.

On Halloween, my buddy marched right up to every house, knocked on the door, stepped back to avoid getting hit by door and held out his bucket like a pro.  Before leaving he gave a hearty "aaa oooooo" while signing 'Thank You'.  I tried only one time to help him carry the candy bucket, but he was not letting go for anything.

Other days I appreciate the lack of anticipation.  Today we went to have his blood work done.  I like to tell him what is going to happen even though it doesn't seem to matter to him.  My buddy is fine until we sit in the big chair and the nurses swarm in to help me hold him down.  Then it could just break your heart with the "Mama" and tears streaming down his face.  But a few munchkins later he's moved past the trauma.

I will be glad when the long list of doctor's appointments that come with each of his birthdays is over.  Not a day goes by that I cease to be thankful that he is healthy.  While I anticipate how sick he will get from the germs, he is too busy enjoying  the feeling of his tongue on the bottom of his shoe to care.

October 25, 2012

the corner

My buddy has an internal sensor that seems to know when I am at my breaking point.  He then magically turns a corner and gives me a break... well as much of a break as he can.  After some good advice from my mom (the retired Special Ed teacher) and some time ignoring house cleaning and focusing on my buddy, things are on the upswing.

Maybe all the talk about being a big 4 year old boy hit home.  He's even used the potty twice at school.  Maybe he just decided that sitting in time out stinks and getting rewarded with the iPad is a much better choice.  Whatever the reason, I am grateful. 

My buddy's birthdays always bring about an abundance of emotions.  There is no way not to relive the first time you hear the words Down syndrome or how you had to leave him at the hospital hooked up to countless machines.  I also can't help but think - now he is 4 and still can't talk.  Does he even understand that it is his birthday? 

He did have a nice party.  We let him play the iPad and open presents whenever he wanted.  He hugged every last person to say Thank You and didn't melt down once. 

In unrelated news, monkey bear is coming out of her shell at school yet really craving Mommy at home.  At school, monkey bear is going potty and talking and has "3 best friends".  She is also crying at night because she misses me so much during the day.  It breaks my heart.  Growing up is so hard.

Rara is refusing to nap longer than 20 minutes and still wakes up at least twice at night.  She has these totally crabby times of day where she is so tired but just can't sleep.  Then she has times where she squeals with delight and rolls about the floor with pure joy in her heart.  Around 6pm she hits a wall, but all she needs is to be stripped naked and set free.  (Of course I have all these fears that she will have sensory issues as she grows, but that is just me being paranoid.)

So, I am still tired, but things are looking up.  Some days I am like Super Mom and all three kids get bathed and those are the days I will remember.

October 14, 2012


We have an ongoing joke around here when it comes to my buddy's extra chromosome.  If he's having a mischievous day, the extra chromosome is all trouble.  If some super loud gas erupts, than it's all Portuguese.  The reality is that extra chromosome is all empathy.

Recently, little rara has been left to cry a little in her crib to get herself to sleep.  The first night, my buddy laid in front of his door and cried along with her.  No matter how much I tried to convince him that she was fine and she would fall asleep soon, he didn't stop crying until she did.

My buddy may be the one that smacked you in the head with a truck, but he is the first one to give you a hug and a kiss.  No matter who is upset - a perfect stranger or his baby sister - my buddy has to check it out and make sure that everyone is fine.

At least three times a day, my buddy will go around the room at random times giving everyone a hug and a kiss.  He never misses a person.  My buddy may not have the words to say how he feels, but a day never goes by where I doubt the immense intensity of his love for us all.

October 10, 2012


It seems like lately everyone needs a piece of me and I seem to be spinning in circles not quite getting anywhere.  I know this is a direct result of adding a new little into the family.  Everyone is more needy and I am just so tired.  I get overwhelmed with all there is to do that I distract myself with, oh I don't know, writing a blog entry and pretending I live a life of leisure.

I thought with the big kids in school, things would be slower.  Oh how wrong I was.  I have to leave the house in a timely manner 3 times a day.  90 minutes of my day is spent in the car because I am too overprotective and won't put my buddy on a bus.  Then there is all the paperwork and homework.  My buddy had a fall project we had to do.  There are a lot of things he really enjoys... decorating a paper pumpkin is not one of those things.

I tried to implement a sticker chart with my buddy to help with his behavior at home.  Really it should be a sticker chart for me. It slowed me down and forced me to pay more attention to my buddy, which of course improved his behavior.  He only throws and is a menace when I am in the other room and he craves some attention.  Maybe I should make a sticker chart for myself... clean toilets, earn a sticker, play game with kids, earn a sticker, 20 stickers gets Mama a new pair of shoes.  Anyway, after a few days of spending so much time focused on my buddy's behavior improvement, I was exhausted because I was up way too late folding laundry, washing dishes, filling out birthday invitations and everything else I didn't get done during the day.

Monkey bear has been really needy since starting Kindergarten.  She had a weekend where she just kept crying because she missed Mommy and she told me that sometimes her eyes get a little teary at school because she wishes she was with me.  It broke my heart a little.  Then she gets all mouthy and snarkily says her new catch phrase - "I don't care".  Also since school, she has been waking in the night to use the potty so she is more tired... as am I because she wakes me up as well.

Poor little rara.  She never gets to nap or eat when she really wants.  She rarely gets to be free to roll about and she's always getting shoved back into the car.  Hopefully she will be on some sort of a schedule that works with drive times and things will be a little more predictable for her.  Oh and if she could stop waking me up multiple times a night, that would be great.

I keep on thinking there must be a way to do it all.  If only I had the right schedule set up I could somehow cook, clean, do dishes, pay the bills, laundry, exercise, shower, give all 3 kids attention, help with homework, speech therapy, grocery shop, bathe all kids, make photobooks, write in baby book, perform mentally enriching activities appropriate for each aged child, properly potty train my buddy and read a book.  Until I figure that out, I'll just keep perusing Pintrest hoping for a magic answer.

September 16, 2012

so hard

My buddy has been so hard lately.  Who am I fooling?  He has always been difficult.  I feel like I keep waiting for him to grow out of it and I'm afraid it may never happen.  As he gets older, he just gets better at finding trouble and new ways of creating havoc.  He is still throwing everything he can get his hands on.  Time out seems to mean nothing... other than a few minutes of peace for me.

I have a friend who says things like, "Oh he is just being a boy." Part of that is true.  He does typical boy things but, at almost 4, he still has no impulse control and no ability to express how he is feeling.  Every outing ends in him throwing himself on the ground - either because he's not ready to leave or because he's beyond the breaking point.  I can't count the number of times I've hauled my buddy in full tantrum to the car under one arm with the baby in the other, my head down so I don't have to meet anyone's eyes.  Today, in my sleep deprived stressed out state, I blame Down syndrome.

I try and focus on my buddy when I have the chance, but most of the fun things I try with him end in disaster.  He eats or throws bubbles, shaving cream, paints, play dough, etc.  Coloring only lasts 3 minutes.  Throwing a ball or vrooming cars lasts a bit longer, but he still has a very short attention span.  I want to do fun art projects or cook together and eat different foods but that is just not possible.  The only thing that seems to calm him down and stop him from trouble is the TV or iPad.  I hate that he spends so much time "rotting his brain".  I am thinking of drastically reducing screen time to see if that makes a difference in his behavior.

Most days it's like talking to a brick wall.  My buddy rarely listens to me.  I have to look him in the eye with my hand on him and even then he often goes back to trouble as soon as I start to walk away.  I try and empathize, imagining how it must feel not to be able to express anything other than basic needs and being told "no" all day long.  But then he goes and hits monkey bear for no reason or kicks her nonstop in the car and I just lose my mind.  And throwing things at rara?  Pushes me over the edge every time.

Some days I am afraid I am failing as a mother and raising this out of control child who always gets his way because it is easier than dealing with the tantrum.  There are so many times when monkey bear complains about his behavior and all I can say is, "I can't stop him."

OK. I feel better now.  Some things you just need to get out so you can move on. 

September 12, 2012

potty talk

There are some things about parenthood that you never expect.  OK, there are a lot of things but at least they creep up one at a time.  The last few weeks have been full of potty talk... literally.

Monkey bear has started kindergarten and really loves it.  But she is really shy and afraid to ask for what she needs.  In this case - to use the bathroom.  There was a lot of holding it in.  There were a few accidents when she couldn't hold it any longer.  And now she has a UTI.  I have a good feeling that she has learned a lesson.

My buddy started in a new preschool class and we've had some issues with how clean, or rather not clean, his bottom is after he pooped at school.  I hate that his teachers have to change his diaper.   I wish that he were potty trained, but he is not.  Part of their job is to wipe his butt.  I had to first send a letter than speak to his teacher in person.  I do not like speaking to anyone in person - never mind having the topic be spreading my buddy's butt cheeks to really get in there.   But until my buddy can speak or do for himself, I need to be his voice.

It's funny how all kids - typical or special needs - face challenges that we, as parents, have to help them through.  I am always more aware of my buddy's challenges.  I guess because they last longer and are more apparent.  I also work a lot with my buddy in ways I never had to with monkey bear.  We have a little speech therapy session every morning and potty training will take a very long time to complete.  Once my buddy has the words, he will never have a problem speaking up for what he needs.  He helps monkey bear come out of her shell to be the best she can be.  He loves his two sisters more than any words could ever express.

August 30, 2012


Monkey bear is in kindergarten as I write this.  I wonder if she is enjoying herself or if she is scared and missing us.  I am very happy to report that she went off without a tear and I managed not to say, "You're wearing THAT?!" 

It's funny because my buddy starts school today as well, but I have no concerns at all. Maybe because he went to school over the summer or because he is in the same school with a teacher who already knows him or maybe because he has no problems at all leaving me behind and joining his friends.  He is a social guy who loves to be out and about.  In fact this morning when we dropped monkey bear off at 'his' school, he was pissed that he couldn't stay.

Now monkey bear is out in the real world - spending more time with others than with me.  Full day kindergarten.  How did that happen?  Just the other day it was just her as a baby and me.  All day together to do whatever we wanted.  I know at some point she needs to find her own way in the world.  I do want her to grow into her own person. Make her own discoveries and have our relationship change in the way it is supposed to.

But can I just say that I miss her?

August 25, 2012


Recently we were enjoying a morning at the park when my buddy saw a small group of 9 year old boys.  My buddy was so excited and ran over to them shouting, "a lalal lala ahhh lala lala!"  Which loosely translates into, "Hey dudes!  What's up?"  One of the boys stares at my buddy for a moment then turns to his friends and says, "He just said lalalala," and laughs in that I-am-laughing-at-you-and-not-with-you way.

For a minute it stung really bad.  Just like I was back in 6th grade and Beth Palmese taunted me with "stripes don't go with stripes" when my outfit was super cool... even if it was too many stripes.  After the sting passes, I wanted to grab that little boy by the shirt collar and give him a stern talking to about acceptance and being a nice person.  But by then my buddy was attempting to climb the rock wall solo and needed some help.

I've had plenty of kids ask out of innocent curiosity why my buddy can't talk.  I am more than happy to answer them.  This was the first time I have experienced any sort of teasing where my kids are involved.  Thinking about it still makes me want to cry - not because my buddy notices now, but because some day he will.  I finally get why my mom knocked on the door of the neighborhood bully's house to speak to his parents.  (Although I hope never to do that myself.)

I know it is not within my power to shelter my kids from life's little kicks in the pants.  Nor is it in my power to make all other kids be kind and loving all the time.  I guess I just wish it didn't have to happen so soon and right in front of me.

August 18, 2012

out and about

We like to go on special outings with the kids to have some fun and make some memories.  Sometimes they go very well and everyone is happy and engaged.  Other times they go oh so wrong.  I'm not sure if we expect too much of my buddy and just don't know his limits.

It can be so frustrating to plan a trip to the zoo or aquarium and have it be one big meltdown after another.  I think maybe my buddy gets easily overwhelmed when there is too much going on.  I hate having to strap him screaming into the stroller just so monkey bear can enjoy an animal or two.  I don't understand what he wants when he throws himself down - not wanting to sit or be carried or walk - and he has no way of telling me.

Then we visit a children's museum and my buddy is perfect - enjoying the interactive displays, playing appropriately and lasting a few hours before he throws himself down and is done.  Or he will sit and watch the sea lion show and clap with everyone else enjoying the show.  I do not have the magic equation so we always have a positive experience.

I have a small hope that my buddy will get better as he gets older, but I have a feeling we still have a few years left of meltdowns.  For now, we will keep trying and be thankful that monkey bear is so understanding when we need to leave early.

August 8, 2012


A couple of weeks ago I had a doctor's appointment.  She asked me if I had any help.  Well, no, except for when my mom is in town.  She asked if we had a babysitter.  Again, no.  I have people I can count on if I am in a pickle.  I have people who have offered to help that I have never taken them up on it.  And, yes, my marriage has survived the last 5 years without a date night. 

I have lots of reasons why I don't want to drop my kids off somewhere.  Monkey bear is a big help and fun to be around.  I know that leaving her with anyone (other than Daddy and Nana) stresses her out.  My buddy will gladly go where ever with whom ever.  But that whom ever better watch out. Very few people understand my buddy and are equip to handle his various behaviors as well as his never ending energy.  He has moments every day where he is very taxing and there are very few people I trust with him.  And, for now, I am the food wagon for rara.

I feel so lucky that I get to be a stay at home mom.  I was married for 10 years before we were financially sound enough for that to happen.  I truly enjoy spending time with all of my children.  Don't get me wrong - there are those days when you want to lock them in a closet and sit in front of the TV with a stiff drink and your feet up pretending you are single.  Then you have that moment where you just snuggle them and your heart grows even more.

The years of intense child care are short.  Already monkey bear will be off to full day kindergarten.  She will spend more time away from me than with me.  Maybe I sheltered her too much and should have sent her off to people's houses without me.  Before I blink again, she will be a teenager and want nothing to do with me.  I try my hardest to enjoy these years.  Sure I call my best friend every day to complain but that is just what we do.

 I have made it 5 years without help.  The big kids are in bed by 7:00 and some day the baby will join them.  Date night starts at 7:05... on the couch... dress code of pajamas.  Who needs a babysitter?

July 26, 2012

milestones revisited

My buddy is growing like a weed.  Every time I look at him it's like he grew a foot taller.  His baby face is gone and he's all little boy now.  He keeps growing out of everything - including his current cloth diaper.  I've been looking into cloth diapers for bigger kids.  I found one that has an extender tab so it can be used for larger kids as well.  I thought this was a great option because then after he is potty trained, I could use the diaper without tabs for rara.

Then it hits you.  He may not be potty trained before rara.  He may not speak before rara.  My buddy is 3 1/2 years older than rara and before I know it she will be accomplishing things that my buddy will still struggle with.  I wonder what the first milestone is that she will hit before he does.  Will rara feel guilty about doing things her older brother cannot? 

It's been a long time since I've thought about milestones.  My buddy has been learning a lot - letters, colors, letter sounds.  He amazes me with what he knows and what he can "tell" me without having the words.  I guess having your baby sister surpass you is just another chapter in life with Down syndrome.

July 19, 2012

growing pains

Every time there is a new addition to your family there are sure to be some growing pains.  Rara has added so much to this family and I can't wait to see who she will be.  But for now, I am sucked into the black hole of caring for a newborn.  I am still amazed at how long it can take to just feed, diaper, and make one little being happy. 

Monkey bear continues to be a huge help.  No one can get a bigger smile out of rara than her big sister.  At the same time, monkey bear pleads with me to play with her.  I feel so bad about the lack of attention she is getting.  It can be so hard to leave the sink full of dishes and use that rare moment of no one needing me to sit down, play and just focus on her.

The bulk of the Mommy Guilt lies with my buddy.  He loves rara with all of his huge heart but he is not baby safe.  He cannot be near her without you being right there. I hate that I constantly have to push him away from the baby and he doesn't get to love on her the way he wants.  My buddy has been asking me lately for more hugs than usual.  I know he is feeling neglected as well.

Then there is rara.  She never gets to be free on the floor to explore the world because my buddy is out and about.  Rara is always locked in the kitchen or in my arms.  She gets left to cry more than I would like and gets dumped on the floor when I need to address my buddy's dangerous behavior.

There are moments each day where I feel like everything is falling into place and I've got the hang of it, but there are way more moments where I feel like nothing is going right and I just want to go to bed.  Luckily I have been here before and I know that it does get easier.  One day the toilets will be clean and the sink won't be full of dishes and I won't be begging a baby just to go to sleep.

July 8, 2012

the husband

I'm not sure I have ever mentioned my husband in this blog.  Let's face it, my life revolves around the kids.  But I wanted to take a minute to acknowledge what an amazing Dad they have.  As rara entered our family, he has really stepped up and taken charge of my buddy and monkey bear - making sure they have fun and plenty of big kid time.

When I was 21 years old and my 20 year old boyfriend suggested we get married, all I thought about was how head over heals in love I was.  Never for a minute did I consider what kind of a father he would be or what our lives would be like together.  There were plenty of people who said we were crazy for getting married and I'm sure they thought it would never last. 

We were married within a year of our first date and our crazy marriage began.  Since we were so young and my husband is a wanderer at heart, we moved from place to place.  We lived in Salem MA, West Hollywood CA, Malden MA, Exeter NH, Albany NY only to settle back in CT where we both grew up.  Now, 15 years later, he has an advanced degree and a grown up job and takes care of us all.

I first met him in High School as a punky 15 year old.  He had a mohawk, wore band T-shirts and combat boots.  I wore my brother's Polo shirts with my Gap shorts and Tretorns .  We still are opposites in many ways, but with all our years together and shared history those differences just bring us closer together.

Never would I have imagined that so many years later, he is a fantastic, loving Dad.  When the kids hear the key in the lock, their eyes light up and they go running for the door just to get a hug.  He tells all of us how much he loves us every day.  Even though we are both exhausted and a bit grumpy, I know I can count on him to step it up and be there for his family.

June 26, 2012


And baby makes five.  We are thrilled to have our family complete and this baby girl has done that and more.  In honor of tradition, since monkey bear named my buddy, I will let my buddy name the baby.  He currently calls her "Rara," so rara it is.

I have been known to say that I don't enjoy the newborn phase, but I am really enjoying it this time.  Rara is so sweet and there is nothing like a good cuddle with such a little one.  I think with the first baby you are so terrified and things are so scarey.  Every little thing seems like such a big deal.  And then with my buddy, there were all the doctors visits and Birth to 3 and the worries that go along with that.  I hardly had a chance to fully appreciate his babyness.

It was a bit surreal being in the same hospital where my buddy was born, walking by the special care nursery, being flooded with all the memories.  I was so worried that something would go "wrong" and things wouldn't end the way I wanted.  I pretty much grabbed the baby and ran as soon as they would let me.

Every day my heart melts when I see monkey bear loving rara.  Monkey bear wants to hold her all day long and always checks on her to see how she is.  Monkey bear told me the other day that she just can't believe how much she loves her sister.  The rare times that rara is on the ground, monkey bear is right there holding her hand, talking to her, gently rubbing her head.  It is so sweet.

My buddy loves rara as well, but is having a harder time adjusting.  He does like to kiss her her and hold her hand, but he requires a lot of supervision.  Rara can't be put down or left alone in a room that my buddy is in.  Even when you are watching, my buddy has been known to throw a thing or two at the baby.  In all honesty, my buddy has been throwing EVERYTHING.  I feel bad because he isn't getting the attention he is used to and doesn't know how to express how this makes him feel.  Ultimately I think this will be good for him.  I tend to cater to my buddy too much.  I hope that in expecting him to be more self sufficient he will step up to the plate.

All in all, things are going well and we are all managing the best we can.  I am trying hard to write things down and take lots of pictures so I can remember the sweetness of a new baby.

May 17, 2012


It's funny how on most days I don't even notice that my buddy can't talk.  I understand almost all of what he is trying to tell me.  Even monkey bear knows what he wants.  "Ssshhhh" with a wiggle of the hand means, "May I have some goldfish please?"  "AHHHHHHH!" means, "stop what you are doing right now I don't like it."

Then there are those times when he is crying and we have no idea what is wrong or if something hurts and you really notice his lack of communication.  Or maybe we are having a play date and his friend has no idea what my buddy is trying to tell him.  Some mornings we head to the mall for mall walking as a family.  When my buddy goes off with Daddy, I can hear his grunting coming down the hallway.  He sounds so much younger than his 3 1/2 years.

So, we upped the ante and my buddy is now in private speech therapy (along with what he gets in school).  It's always a rude awakening to read the report and get our homework assignment of helping my buddy make "ooohhh" and "eeeee" sounds.  We aren't even up to words.  There is always that part of me that wonders if we did enough. 

I don't know how to teach someone how to talk.  I know all about talking to your children about the world around them and reading lots of books.  I know how to listen to your children (even if it's baby garble) and talk back and forth to show how conversations work.  I've done all this... plus lots and lots more... yet we are still working on "oooooo".  I have confidence that he will get it in his own time, but I can't help but wonder how old he will be.  I feel like I am missing out on what is going on in his head.

April 23, 2012

number three

I am getting more and more excited for the birth of my third little one.  There were so many factors that went into deciding if we should have one more.  But when it comes right down to it, I love being a mom and who can resist just one more to love. 

When we first took the leap into parenthood, I had it in my mind that I wanted two children close in age.  Mission accomplished... but of course it wasn't quite what I had planned.  When the words Down syndrome entered our life all of a sudden things change.  My buddy may live on his own, but I don't trust anyone other than family to check up on him.  There are too many people in this world  that could take advantage of his open heart.

My buddy will never give me grandchildren.  While it's a little premature to be thinking that far ahead, it makes a difference to me.  I don't want to put too much pressure on monkey bear to be the sole provider of grandchildren while looking out for my buddy.  Although we are not having a child just to offer support to monkey bear, it's all part of the equation.

After my buddy was born and we looked at him and saw the unexpected in those almond eyes, there was such grief and heartache.  I am looking forward to a uncomplicated post birth (knock on wood) and the opportunity to just relish in the new life without shedding one sad tear.

Nothing broke my heart more than having to leave the hospital without my buddy.  I needed to have him in my arms, nursing and needing me.  My heart couldn't heal until he was with me.  Instead of bonding, I was left hooked up to a machine like a milk cow making endless trips back and forth to the hospital to deliver the precious nutrition.  There was not enough time for either child. 

My hopes for my third (and last) birth are happy smiles, no awkward conversations filled with all the wrong words and my baby in my arms the day I leave.

April 2, 2012


Another holiday is approaching where my buddy gets left out.  Granted he has no idea he is missing out on the fun.  Today monkey bear got to decorate eggs.  I really wanted to wait until my buddy was home from school and let him participate.  Then visions of a dyed egg being tossed across the room, landing with a splat, permanently dying the floor Spring Green came to mind.  Not to mention the thought of cupfuls of Paas being dumped on skin, clothes and hair.

I feel so guilty knowing that my buddy doesn't get to color eggs or bake Christmas cookies or even pick out his own Halloween costume.  I love a holiday and I especially love the memories of all the traditions and fun activities my mom did with us.  My mom hid Easter candy around the house up until we were in our 20's - and we never complained once! 

I find myself saying - but he's 3.  He should be able to join us.  Then he takes a spoonful of cereal and flings it across the table and I remember who my buddy is.  He has so many wonderful qualities.  He is funny and outgoing and genuine.  But my buddy is impulsive and reckless.  I have high hopes that he will grow out of this phase some day.  Until then, we will have our traditions when he isn't looking and rest peacefully knowing there will be many years where he will participate in everything.

March 15, 2012


I was watching a show about giving your Kindergartener a heads up so they could go further in life and be more of a leader.  I have no way of knowing what kind of a parent I would be if Down syndrome never entered my life, but I have learned many life lessons from my buddy.  One important lesson is to celebrate what your child can do - without trying to compare them to others.  I think I put way less pressure on my kids to be THE best and work on being THEIR best than I would have otherwise. 

I also learned that parents of children with Down syndrome have a lower divorce rate.  My personal theory is it's hard to forget about loving each other when you see such displays of love from your child.  My buddy will go up to random children in Target, give them a hug and kiss and then just walk off. 

Having a child with special needs is so full of yin and yang.  Some days I struggle just wanting life to be easy for my buddy.  Wishing the little things didn't have to be so hard.  Dreaming of the day when he can tell me what is wrong instead of throwing himself down on the ground.  Wondering how old he will be when he is finally potty trained.  Then there are the days when he is so funny - even without words.  Or the way he looks at me with devotion and never ending love.  Oh, and the snuggling that little boy can do.  Those days I wouldn't change a thing.

Then I think about monkey bear.  I wish she wasn't so shy and would speak to her peers.  I wish she wouldn't cling to me and would just run off and play.  Is that really any different?  I know that peer interaction is a challenge to her and her shyness will be an obstacle she will need to overcome throughout her whole life.  I don't really want to change monkey bear.  But as a parent, it can be so hard to watch your children struggle.

I guess every child can teach their parents many lessons.  I think because my buddy's lessons come at a slower rate and are hammered in on a daily basis, it is easier to hear them.

February 21, 2012


When you have a baby with Down syndrome, you are automatically welcomed in to this amazing community of people.  There is a ton of support and families more than happy to answer any question you may have.  As my buddy has grown, I've noticed there are some pretty polarizing topics within the community.  I'm still forming my opinions but there are some views I have that I'm sure many others don't agree with.

My buddy is different from other kids.  Sure he's just a child learning how to make his way in this world and he does things that every other kid out there does.  I've had a hard time putting into words how he is different.  I think the only way to describe it is most typical kids have a certain order that they reach each milestone.  My buddy reaches milestones haphazardly.  He'll reach a physical one right on target while a cognitive milestone will be months to come, for example.

This haphazardness coupled with the huge lack of impulse control can lead to safety issues.  My buddy at the age of 3 has to be locked into his room every night.  His room only has a mattress on the floor, a dresser bolted to the wall with drawer locks and no knobs, and a few soft toys.  My buddy gets locked in there while I shower as well because it's not safe to have him in the rest of the house unsupervised.  We have many years ahead of us before he can walk along with me in the grocery store or play in the yard without me right there. 

Even though my buddy is different it is OK with me.  I don't feel like I need to pretend he is something that he is not.  Just like it is OK that monkey bear is super shy and won't talk to her peers.  It's all a part of who they are.

I have mixed emotions about inclusion.  I love the fact that my buddy is lucky enough to be included at school and given the opportunity to make friends with lots of different people.  I just don't think I believe in inclusion at all costs.  I wouldn't expect monkey bear to be in Advanced Algebra if she wasn't able to understand the concepts and learn.  I would find a math class that was more appropriate for her ability.  If my buddy understands Algebra and enjoys it then all the more power to him. But if being in a special ed class that teaches him how to balance a checkbook is more appropriate than so be it.  Whatever his ability may be is fine with me. 

Let's face it.  We all make friends with people who are like us.  I don't have friends who are Harvard educated rocket scientists nor do I have friends who are intellectually disabled.  I want my buddy to make lifelong friends with anyone that appreciates who he is.

I think the most important thing we can do for all our children is to encourage them to push themselves and be the best they can be while honestly accepting who they are.

February 1, 2012

food wars

My buddy is slowly making me insane.  I mean that in the best possible way.  Most of the day is filled with hugs and laughter, but each mealtime is filled with drama and stress.

A typical meal lately goes something like this:  I put food on the table.  My buddy throws himself down in a full blown temper tantrum.  Monkey bear and I roll our eyes and eat our meal while he rolls around on the ground.

Since my buddy is in school now I just can't bring myself to send him in with an empty belly.  So now come the theatrics... from me.  I can remember when monkey bear was about 9 months old and I had to sing Old MacDonald every time I wanted to feed her or she refused to open her mouth. 

So the food is on the table.  It is food that my buddy approves of yet he is complaining full force.  If you just plop him at the table in this state, the food is guaranteed to fly across the room.  So Mommy heads over to iTunes to put on the one song that will stop the crying:  Three Little Birds by Bob Marley.  (Or Bobby Marley if your name is monkey bear)  If it is a mild meltdown, then the song alone may be good enough.  If we are in major meltdown mode you must pick up the flailing 35 pound preschooler and dance about the room first. 

The smile he gives is almost worth the strain on my back and pregnant belly.  The next move is either straight to his chair.  Or on those really bad days, he sits on my lap.  Never put the food within reach until you have completely assessed the mood.  One must slyly nudge the milk close and if that goes well then introduce the food. 

The thing that gets me is when my buddy finally starts to eat, he is happy and will eat the whole thing.  I am embarrassed that I fall for it every time.  But I hate the cracker diet in front of the TV and that seems to be the alternative.  I've tried feeding him nothing and then sometime later give him the same food.  It's never gone well.

I would pay countless dollars for some magic chair that he loved and sat in happily while munching on his healthy food.  A girl can dream... 

January 18, 2012


When we were having our second child, there was a nagging fear that we wouldn't love them as much or the older child wouldn't want them in the family.  Then that second child is born with an extra chromosome and the fears are multiplied.  I am very happy to report that all our fears were unjustified.

It really helps that my buddy is just so darn loveable.  He hugs with all his heart and is genuinely happy to see you walking his way.  It also helps that monkey bear is an extraordinary girl.  She has compassion and kindness oozing from every pore.

Lately they have become pros at playing together and it just warms my heart.  One favorite game is 'baby'.  My buddy will lay on monkey bear's lap like he is the baby.  Monkey bear will rock him back and forth while singing a lullaby.  My buddy will do a fake snore.  Then it's feeding time followed with a vigorous pat on the back.  My buddy's real good with a loud fake burp. 

Another favorite game is hide-and-seek.  My buddy will go to the front door, cover his face and count (a series of grunts).  He is so good at finding monkey bear and they are both so excited.  When it's my buddy's turn to hide, you better find him fast because he doesn't stay hidden for long.

I think the one that makes me laugh the most is what we call 'chase the vacuum'.  When I vacuum, I will chase them as I clean pretending that I am about to suck them up.  My buddy one day decided to chase us around with their play vacuum.  Everyone ends up in hysterics. 

Seeing my two favorite people enjoying each others company so much makes me one happy Mama.