Tuesday, September 28, 2010

Getting to the heart of it

There has been something on my mind lately, and I've found that in order to really get to the heart of it, I write.  The thing is that sometimes it takes me a good page and a half of blah blah blah this-happened-yesterday before I get to the good stuff. ...I'm gonna try to avoid that and jump in. So, excuse me if what comes out next is unorganized thought and unrelated topics.  I'll start here: A few days after I received the results of my amniocentesis concluding that my baby has Down syndrome, I attended my son, Christian's Mommy and Me class at the preschool.  We had a circle time just for the Mommies.  It was during the outdoor playtime, where half of the Mom's would watch the kids and the other half would sit and talk about the topic of the week (i.e sleeping habits, potty training, tantrums, etc.)  At this particular circle time, the teacher started the talk by asking if any of us had anything that we needed to address.  I couldn't hold it in, and started crying, "Yeah...I just found out my baby has Down syndrome."   The teacher and one of the Moms immediately grabbed my hands.  Everyone was concerned, I was devastated.  One Mom said nothing.  And I mean, Nothing. It's okay, I told myself.  Not everyone knows what to say.  I had to leave early that day for a doctor's appointment and before I left, the teacher asked if she could share the news with the other Moms in the class. She wasn't sure if it was a good idea if some knew and some didn't.  I told her that of course she could share the news...besides, it was one less time that I would have to break down and choke back the words, My baby has Down syndrome.  It was our last class before the Christmas holiday, so all I knew of this conversation was what my friend, Katherine (another Mom in the class) relayed to me.  She told me that everyone had been really concerned and sad for me that we had received this news.  That there had been a lot of tears during the Goodbye song...you know the cutesy little song that all preschools sing when the children leave for the day? Yeah...the Goodbye song. It was teary...it kinda makes me laugh to know that.  Bet you never envisioned a circumstance where Moms would be crying during the Goodbye song... 

Well, I haven't seen some of those Moms since that announcement, because their children advanced to the main preschool after the holiday break.  I haven't seen some of them...until now.  It's quite a flash-forward.  From Utter Devastation to We're fine.  In fact, we're better than fine...we have a beautiful baby boy at home who is a content little guy and sleeps through the night! A flash forward, indeed. One Mom in particular, was someone who I loved talking to.  Every time she would see me, she would light up in a big smile and say Hello!  Well, her daughter and my son are in the same class now and it took me a few classes to even realize it.  Every time I saw her, she was engaged in some conversation or looking some other direction, but I finally caught her eye last week and said, "Hi!  How are you?  I'm so excited that our kids are in class together!"  She was nice in return and I introduced her to Elijah, who smiled at her.  Then she was on her way, and since then, every time I see her, she is engaged in conversation or looking some other direction... It may be nothing.  I thought it was curious that there was not even a cursory "How are you all doing? How is the baby doing?"  Curious, but not damning. I'm old enough to realize that not everything is about me- she could be preoccupied with many, many things.  She could have very important, engaging conversations that should not be broken and she could looking around taking in the landscape deep in thought about how she'll re-do her flower beds. Who knows?  But, I kinda feel like it might be...  discomfort? ...awkwardness? ...ignorance?... 
Maybe something, but maybe nothing.  But it makes me sad.  It makes me sad because I wish I would have known then what I know now.  I wish I could've, would've had the foresight to know that my fears about Down syndrome were outdated. I wish that I could've enlightened people.  I wish that I didn't have fear about my beautiful baby boy.  But, I did.
It's not about this Mom.  I don't really know her, and if she really is feeling so awkward about me and my family, then chances are that we wouldn't be a good fit friend-wise anyway. 

I brought this up to Susan, the childhood development specialist, who has been coming each week to assess and play with Elijah and discuss his progress with me.  Her background as a therapist, was especially helpful today! She shared that some people (for many different reasons) need to feel that their world is fair and just and good, and when unexpected or bad things happen to people around them, it shakes their world.  Some people cannot handle having their world shaken and so they step back.  Ah-ha.  I think she may be right.  She also reminded me that those old stereotypes still exist and that there are people who even think that Down syndrome is contagious!!  (Just in case, if you are one of them, click here.)

I think the real reason I have been cavorting with all of this "Is she, isn't she" stuff, comes down to a very, very disturbing/ incredibly uplifting piece I read over the weekend.  Take a little time, and read this blog post:
My jaw drops when I read what people are saying in this era, this year, this month, and in fact, just one week ago.  I only hope that if, or when, I am faced with bold comments such as those, that I will have the grace and strength that this writer did.  I have strong feelings about what my choice to have my baby means for me, and maybe even some strong feelings about what it might mean for others.  It could border on the...dare I say...judgemental... (Loud gasp.) It's possible.  One reader of my guest post last week pointed out something that I said could be read as a judgement, and I'm thinking it through.  I'm taking her comment seriously because it was said in a loving, hey-have-you-thought-of-it-this-way way, and I really appreciate that.  I appreciate that at the heart of what I'm dealing with right now, it is simply guesses about a person's small talk (or lack thereof). I appreciate that at the heart of what I'm dealing with there is mostly just love and support.  I hope I am not boring my friends to tears with "the heart of what I am dealing with", but I guess that is why I have this blog. They don't have to read it. :)

At the heart of it, I'm blessed.

For my birthday, I asked for this very special necklace that I just love.  Thought I'd share it with you:


Saturday, September 25, 2010

Guest Post

I was honored to be a featured guest post on one of my favorite blogs yesterday!  Check it out!


Friday, September 24, 2010

Baby Glasses

Well, the day has come.  In the big picture there are far, far...far, FAR worse things... but my baby boy, Elijah, is near-sighted and needs glasses.  This should be no surprise, really. And not just because he has Down syndrome (which comes with an entire laundry list of eye problems associated with that pesky extra chromosome,) but because both Charles and I were nearly blind from near sightedness prior to the invention of Lasik eye surgery. 

When you're pregnant with a baby, you play (or, rather I played) the Which-genes-will-he-get game.  You know the one: Great hair? Dad's eyes? My formerly bad skin? Tall? Bad eyesight?  And I think I "played" it even more once we found out that Elijah has Down syndrome.  Will our genes come into play at all? How much will that extra chromosome override? Will he look like his brother? Will he look like us? Is there any chance in hell with both parents having bad eyesight AND a Down syndrome diagnosis that he could come off scott-free without any eyesight issues?  Apparently the answer is a resounding, NO. But, as I said, there are far worse things, so I'm embracing the eyesight issues- despite my own childhood shame and embarassment from having to wear glasses. 

We had our first Pediatric Opthamology appointment yesterday.  I was a little nervous.  I could tell that Elijah wasn't seeing very well, and I was really worried because he wasn't able to focus his eyes on much- his eyes seem to move in a pendulum-like effect, as if he is trying to focus.  The focus issues have improved significantly over the last few months and it's obvious that Elijah sees because of the giant, all-body smiles he gives people.  However, I could tell that he didn't seem to see anything  further away than about 3 feet.  As a reference, our Regional Center Coordinator told me that at his age, he should be able to see about 30 feet away.  Yeah...definitely not doing that.  So, I made the appointment with the Opthamologist last month, and it took us 4 weeks to get in to see him. I brace myself for doctor appointments these days.  It's kind of sad to say, but in my experience, the medical community is extremely ignorant and categorical about Down syndrome. What's worse, is that most claim to be knowledgeable... We arrived a little early to our appointment and took a seat in the waiting room.  Of course, the timing was such that Elijah needed to nurse as we arrived. The nurse told me that we could go ahead and wait in a room, so that I could feed Elijah while waiting for the doctor.  She told me she would get a few "particulars" and put some drops in Elijah's eyes to get them dialated before the doctor came in. She took notes on my concerns, and then said, "Downs babies are the happiest babies!" (Deep, cleansing breath.) I smiled and said, "Yes, well just like all children, sometimes they're happy and sometimes they're not, but the stereotype is really a lovely thought." She didn't say anything in response, but I felt pretty good about the exchange.  It didn't seem like I made her feel uncomfortable, but it did seem like her wheels were turning just a little bit.  As Elijah finished up nursing, the doctor came in and introduced himself.  He had me sit with Elijah on my lap, facing him.  As he darkened the room he looked into Elijah's eyes with a lighted instrument.  Then he held up a lens in front of his eyes and looked through that.  Honestly, I'm kind of in awe.  It's amazing what they can tell about a child's eyesight by just looking into their eyes!  When he finished examining him, he said, "Well, the good news is that his ocular structure looks good, and he is not blind. (Thank you Jesus!!) But, he certainly isn't seeing clearly and has near-sighted vision.  In some cases, I would just say we could wait it out a little bit and see what happens, but in his case, I think it would be worth the effort to try some glasses.  He also has Nystagmus (that pendulum-like effect I described), but I'm hopeful that the corrective lenses could improve the condition. Plus, if the glasses help stimulate the optic nerve (? Don't quote me here...medical jargon goes awry in my brain) then it will be beneficial to his learning."  I love that.  Not the part about the poor eyesight & Nystagmus, but the part about our Doctor taking a proactive, optimistic approach. Thank you. I asked, "In your experience, do you have any teens or young adults with Down syndrome who have successfully been able to wear contacts?"  He said, "No.  But, I won't rule it out.  Look, if in 12 years or so, you and I think he could handle it, we'll do it. Who knows?  I learn something new everyday in my practice, and just because I haven't seen it, doesn't mean it wouldn't be possible.  Maybe it will be and we'll write a paper in 12 years."  Yes. We'll write a paper. Why not? 

So, we left the doctor's office, and made a left turn into the optometrist.  To pick out Baby Glasses. Wow.  The woman who helped us was super friendly and immediately pulled out some soft, flexible frames.  We giggled over how tiny they looked, but most were even still too big for Elijah's face.  We tried on some blue, round frames, some charcoal round frames and some pale blue square frames. He looked like a little Poindexter, and I giggled again, "I think the pale blue frames are best on him and the color is neutral enough to go with most outfits."  So, I pulled out my debit card and paid the (gulp) $244 (plus the Opthamology office visit co-pay & yearly eye exam fee) for Baby Glasses. Yikes!

I can't remember how old I was when I first started "wearing" glasses (and I put wearing in quotations because, in theory, I was supposed to wear them but instead chose near blindness...)  I hated them. As soon as I was old enough, I begged my parents for contacts and wore my glasses as rarely as possible. I remember a time in high school, when I had a contact-free day.  People would wave and say hello, and I had no idea who they were...I couldn't see any detail to their face to know.  To make matters worse, I had accidentally sat on the one pair of glasses I owned and broken off one of the temples.  Then, a few weeks later, I accidentally stepped on the glasses and broke off the other temple!  Now I had just the front part of the frames and lenses.  So, I would sit as far back in my classes as possible (I couldn't see sitting close anyway- close was still too far away...), and when no one was looking, I would hold the frames up to my face to see the chalkboard.  Seriously. Embarassing. I don't know why I didn't tell my parents.  Probably because I knew they cost a fortune (hello $240 Baby Glasses!!) and didn't want to have to tell my parents to shell out more money for something I hated anyway. 

So, I'm just a little worried that getting Elijah to wear the glasses will be a struggle.  Maybe he didn't get my Aversion-to-wearing-glasses gene?? One can hope...

The glasses are ready next week. So be ready for the onslaught of "Elijah in Baby Glasses" pictures....Really- Is there anything cuter?


Sunday, September 19, 2010

Coin in The Belly

My husband and I consider ourselves kind of "foodies"- we love to cook and eat, and despite functioning on mostly moderate means, we manage to derive true enjoyment out of mealtimes.  So, we pride ourselves (deserved or otherwise) on the fact that our 3 year old, Christian is a GREAT eater.  And I mean, GREAT.  For instance, tonight, he had roast chicken, Caesar salad (3 helpings) and potatoes with haricot verts...(I realize that Haricot verts are really just green beans, but it sounds more exotic that he ate Haricot Verts...)  So, I digress...He's a GREAT eater, and apparently that now includes loose change

We were in-between a busy social schedule yesterday, and home for a nap before heading off to our last Birthday Party of the day, when I suddenly hear screaming, coughing and hysterical crying coming from Christian's room.  I was on the phone with Charles, who was out of town on a job interview in San Francisco, when I hurriedly ran into Christian's room.  He is grabbing his throat (though clearly not choking) and screaming, "My coin!!! My coin!! I NEED it back!  I NEED it!!!!  I say, "Did you swallow a coin?!!" and he cries, "Yeah...I need it back...I need it!!  I yell to Charles on the phone, "He said he swallowed a coin, what do I do??!!"  Charles hears (with no thanks to the cell phone reception): "He said HE (Eli?) swallowed a coin!"  Charles says, "Put your finger down his throat and get it out!" Me: Total confusion...this doesn't sound right...but, okay, "Christian open your mouth!"  There is clearly nothing blocking his airway, no coin to reach or grab at.  It has been swallowed and is on it's way to being digested.  I say to Christian, "What kind of a coin was it?"  He cries, "A quarter...I need it back..."  I grab a penny, a dime, a nickel and a quarter and put them down in front of him. "Which one did you swallow?" and he points to the quarter. Yup.  It's the biggest one possible.  Meanwhile, Charles and I get disconnected and a few minutes later I receive a call from the Los Angeles Fire Department, "Yes, Ma'am, your husband called on your behalf and said that your 4 year old needs help." (Charles actually told them more than once, that our 4 month old, not 4 year old needs help.  But, I still don't realize that Charles believes Elijah is choking and in major trouble.)  I tell them, "No, everyone's fine.  It's my 3 year old that swallowed a quarter, but his airway is not blocked, he is not choking, he's talking and carrying on as though nothing has happened.  I am, however, getting ready to put him in the car and take him to the emergency room." There were frantic phone calls to Charles, then my Mom, and the pediatrician, plus a little frantic scrambling for my insurance card which I remembered seeing displaced from my wallet earlier in the week.  My Mom drove over to pick up Elijah, so that I only had to bring Christian with me to the ER.  We got in the car and headed out.  Our conversation sounded something like this: Christian: "Mom, I have a coin in my belly. We need to go to the hostible. We never, never put a coin in there again."  Me: "That's right sweetie, we never put anything except for food in our mouths." C: "I didn't eat it, Mom." Me: "You didn't?? But you swallowed the quarter, right?" C: (Pitifully) "Yeaaahh...Dr. Keer gonna git it out. He use a bery, bery long stick and he get it out of my mouth."  Me: (Laughing so hard I can barely speak) Well, sweetie, we aren't going to see Dr. Keer (the pediatrician), but maybe a doctor at the hosPITal will get it out." C: "Yeaaahhh...I need it back..."

We made our way to the hostible hospital and I checked us into the ER.  I told the ER nurse at the check in desk, "My son swallowed a quarter." He chuckled, and told us to take a seat in the waiting room.  While I stood there, signing us in and holding my 3 year old's hand, a woman was screaming bloody murder from the inside of the double doors we stood next to.  Luckily, Christian didn't ask about it and didn't seem too disturbed.  I was terribly disturbed, though.  This woman sounded like she was being tortured.  We took a seat and waited to be called.  A stressed-out looking woman came in and sat down next to a man in the waiting room and said, "They are going to give her something to calm her down."  It took every ounce of restraint not to ask, "What is wrong with her???"  While we waited, the screaming woman grew quiet and about 10 minutes later, we were called back.  Christian took my hand and we followed an ER nurse back to a little computer station.  Christian started telling him right away, "I have a coin in my belly."  The ER nurse said, "You do, huh?" and Christian replied, "Yeah.  It's right there (and lifted up his shirt to point at his belly button.) The ER nurse looked at me and said, "If it's just a quarter, it can pass on it's own.  The doctors don't like to do surgery to remove something like that, especially since it's not something that has sharp edges or could endanger him.  We see this all of the time- pennies, quarters, toy parts.  It's up to you, but chances are that it will pass within the next 1-2 days."  I said, "Oh really?  A quarter is not too big to pass through?"  He confirmed that it wasn't, so I decided it wasn't worth putting my son under anesthesia, if it was just going to pass.  So, I explained to Christian that we are going to have to wait until the quarter comes out in his poop and that when we eat something, it goes into our throat, then into our belly and then it comes out as poop.  It was a shortened, hopefully preschooler-friendly explanation.  We got back on the road and headed out to join my family for my nephew's 13th birthday...

Today, I went back to the little local church that I checked out a few weeks ago. (See this post to read about that experience.)  The pastor and his wife have a young boy with Down syndrome and the wife, Priscilla, and I have been in touch a couple of times since our first meeting.  She called last week to tell me that she'd told her Mom about meeting me and Elijah and her Mom made a blanket for Elijah and wanted to get it to me.  I told her I'd meet her at church, and so I left Christian home with Charles (who had gotten in late the night before after the Quarter debacle) and went to church with Elijah.  Things looked a little different.  For starters, the awful mauve mini blinds had been drawn up to reveal simple, stained glass windows on all sides and the light that came through was bright and golden.  Things didn't look dim and dusty, as they had before.  The people are so warm, and like in some sort of a small town, people already remembered me, knew my name, knew Elijah's name and even knew that he has Down syndrome.  The extreme friendliness caught me off guard just a little.  I want so badly to like this church, because it actually has some charming things about it, however...without putting any of these lovely people down, I will just say that It is not for me.  I stayed and chatted for a little bit, while Elijah flirted and smiled at everyone he met.  And when I say smiled, I mean SMILED- as in a full body experience.  Because when he smiles, it's not just his face that lights up, it is his entire body- his feet pull up in joy, his hands come together as though he's about to clap, and he practically glows.  We said our goodbyes and took his sweet new blanket home to show Charles and Christian. 

The day progressed uneventfully, until about 5pm, when Christian complained of his belly hurting.  I said, "Does it hurt like you have poopy?"  He said, "Yeah."  So, I convinced him to sit on the potty (the small one) while I read him some books.  He grunted and groaned a little, but it seemed nothing more than the typical BM.  He finished up and got off the potty while I went to retrieve a chopstick from the kitchen. (I have a good luck thing with potties and chopsticks that one day I will... never... blog about, because it definitely breeches the TMI (Too Much Information) category. However, those few very close friends and family members who know the story can appreciate that it was a chopstick I retrieved from the kitchen.)  I brought the chopstick back to the potty, stabbed at the ...remnants..and hit pay dirt!  I told Christian, "The quarter came out!!  It came out!!"  He started jumping up and down.  (You would think I just announced that we were going to Disneyland!)  He said, "It's dirty!"  Yeaaahhh. It's dirty.  All I have to say now, is that if it wasn't obvious how much I love my kids, I think it's pretty cemented now.  So, without further a do, or should I say... without further a doo-doo? 

(I promise this is sparking clean...)

The quarter on the left is a normal quarter. The quarter on the right has been through my son's digestive system. Apparently he has the Midas touch!

My Mom-ness is feeling especially verified after this weekend's "Coin in the belly".  I know this happens to other Moms everywhere, right??  If it's happened to you, or something equally embarrassing/challenging/scary-but-worked-out-just-fine thing has happened to you or one of your kids, please leave a comment and share your experience.  I know I'm not the only one who has dealt with this...right?


Tuesday, September 14, 2010

Adjusting to change

My biggest little man, Christian, is growing up so fast.  He's mastering language at an alarming speed and leaving me to question why I worried about a possible speech issue a couple of months back. If there is one, I think it's something that can be easily resolved with some speech therapy.  So, last week, we were sitting around the dinner table and thinking up nicknames for each other.  Charles started by saying to Christian, "Well, you're Scooby Do...and I'm ScoobaDaddy...and Mommy's...hmmmm.."  Christian shouts out, "Elijah is ScoobiLijah!!" We all started laughing.  I said, (With a heavy gospel accent) "Scoooob-i-Lijah! I love it!"  So, now we all go around invoking Eli's new nickname..."It's Scooooob-i-Lijah!"  (You must have the appropriate gospel drawl to make the nickname really sing.)  This is just another way I am proud of Christian.  He has accepted Elijah into his world and thinks about him and cares about him. (My heart...)  He even drew a picture of Elijah and showed me a beautiful-work-of-scribble-art and said, "Look, Mommy! It's a picture of Elijah."  I tried to make heads or tails of the picture to no avail, but then he said, "Look! Here's his hair," and proceeded to heavily scribble a mohawk on top of one portion of the picture that did vaguely resemble a circle.  Considering Elijah does have a little baby mohawk, I think we may have the makings of an artist here... (Although, I did totally miss the boat on one of his other works of art from the same week.  We were looking through his giant art pad for one unused piece of paper, and I said, "Oh sweetie, I think they've all been used...oh wait, here's one!"  The page had one small line, lightly drawn.  Christian responded, "Mom. That's a seal." (In a tone that any teenager would envy- conveying just that smidgen of disdain for the fact that I couldn't possibly see that the page was indeed full of a very significant piece of work. A Seal.) O....Kay...  So my little genius artist/nickname conjurer started preschool on Friday.  It was a busy morning of rushing around trying to get out the door, so as not to be late to the very first day of school.  We put on the outfit I had selected for his first day, wet and combed his hair, gave just a small spray of hair spray in hopes that he wouldn't look disheveled immediately, strapped on his backpack and headed out the door as a family: Me, Charles, Christian and Elijah.  School was a buzz of excitement.  When we walked up, a line had formed outside of the preschool office.  We looked for Christian's name tag on a table adorned with small baskets each containing name tags separated by color.  I started sifting through the basket of orange name cards because our welcome letter had informed us that he is in the Orange Door room.  We affixed the name tag and walked through the office, where the director asked Christian if he was excited about school. Mute followed. So, she asked for a high five and that elicited a healthy response.  We made our way over to the orange door and  read the instructions on how to check our child in each day.  Once we washed hands and put things away in his cubby, (He has a cubby!) (My heart...again.) he sat down with teacher Stephanie to play with the playdough. We stayed for a little bit and watched as he checked the classroom out: smelling the playdough (vanilla), inspecting the dinosaurs, getting cozy in the reading corner...I thought now was as good a time as any, so I said, "Okay, sweetie, we're going to go.  I love you! We'll see you in just a little bit."  All of a sudden, his hands flew up to cover his eyes and I could see his lips quivering.  "Don't go! You need to stay!" he cried.  Then I caved.  I started crying too, and I hugged him tight, "Okay baby, we'll stay a little longer...we'll stay a little longer..."  Luckily, the teacher came over to save the day.  She said, "Your Mommy and Daddy are going to be right outside, and then they'll be back really soon." And he said (still crying)...

"I'm hungry." 

(Great.) The teacher looked at me and said, "Did he eat?"  I don't think my voice could've gone any higher. "YES! Of course, he had breakfast!" So, she turned back to him and said, "Would you like some crackers?"  He said, (sniff, sniff) "Yeah, crackers..."  So, we said the I love yous, and the See you laters while the teacher led him away to get some crackers.  We stood outside the classroom talking to some other parents I know, and about 5 minutes later, the teacher peeked her head out and said, "He's doing better already." 

The ride home was bittersweet.  I want him to succeed and be independent in life, but I also feel like my baby doesn't need me as much anymore.  I got about 1/4 of a block away and started bawling.  Charles said, "What's the m....oh...Christian."  Yeah. Christian.  We were back promptly 45 minutes later to pick him up (It was a shortened "transition" day.)  He was sitting in a circle with the other kids on a little mat that looked like a doormat.  When he saw me, his whole face lit up and they started singing the "Goodbye Christian" song.  Then he gave his mat to the teacher and came running to me.  (Oh, heart.) He said he had fun and I decided not to push talking about when he would go back. 

My handsome preschooler on his very first day of preschool:



As if the day wasn't momentous enough, Christian also started in his first Boys (Aged 3-5) Hip Hop Class!!!
(Can you tell who is really excited about this?)  Little boys doing Hip Hop is akin to the little girls putting on tutus for me.  There really couldn't be anything cuter.  Except maybe babies in furry animal costumes at Halloween. Or little ones holding hands.  But, it's right up there.  I became THAT Mom.  The Mom that can't sit down and frequently (and without warning) shouts out (in the 5x5 waiting area outside the studio): "Ohmigosh!! They are sooo cute!!" The Mom that is blocking everyone's view of their kids, because she is taking pictures from every angle of the picture window.  No one else seemed as excited as I was.  Why not?? Was this not a new class for their boys?  I realize that my background as a dancer and my job as a dance teacher might possibly make this especially, and uniquely, exciting for me, and I held my breath during his class (except for when I was spontaneously shouting)...because it won't be any fun if he doesn't like it.  I got to live out my dreams of being a professional dancer, so I don't need my kids to live that dream for me.  Still...everytime that music played, he bopped.  Maybe not always the exact way the teacher was showing them, but he liked the music and he liked moving his body. And his "beat boy" poses were the bomb...


The weekend continued on a high note with Saturday delivering the "New Families BBQ" thrown by the Down Syndrome Association of Los Angeles (DSALA).  Now...I mean NO disrespect here at all, but the "Association" for Down syndrome in Los Angeles is still just a gathering of maybe 25 families who have a baby under 3 years old with Down syndrome, who all fit nicely into the President of the DSALA's backyard. 1 in 733 babies born with Down syndrome each year. We're not pulling in big numbers. I'm just sayin...But it was the largest gathering of babies with DS and their families that I have been around.  It was a tad overwhelming.  Mostly in a good way, I think.  I saw new friends I've been connecting with- some primarily online due to distance and some in person.  I met a few new families that were super cool and who I hope we get to know better. And I met a couple of people who are still adjusting to this new world they've been thrust into.  I, personally, was grateful to have the shock behind me and in a place where I'm just loving my sweetie little baby boy, who is becoming quite the flirt with his full-body activated smiles.  Scooob-i-Lijah!

Sunday saw a Book Club gathering of ladies that I volunteered to host this time around.  We got into some deep discussion, there were tears, hot topics of some debate and of course, wine and food. I wrapped up the evening feeling so blessed to be included with a group of women who search to be intellectually stimulated, but who can relate to me on many "mom" levels (since all have kids around the same ages).  I only wonder if how I have been effected by Down syndrome will effect those friendships?  Maybe for the better...maybe not in some cases...I do know that I am forever changed. I am forever changed in my thinking. I am forever changed in how I feel. And I can't go back. What I used to think and feel was all I knew at the time, but my world turned upside down in the most unexpected way and I re-evaluated who I am and how I want to be in this world.  I sometimes wonder if that will become too much for others.  I mean, no one wants to hear You just don't know, what you don't know.  It's annoying.  I remember a super-close friend telling me while I was pregnant with Christian, that I couldn't know what it was like to be a Mother, until you really are one.  No amount of explaining, or describing or use of analogies will accurately capture it.  Turns out, she was absolutely RIGHT.  It was still annoying, though... :)  Hopefully my book club friends and everyone else, for that matter, can know that life got colored in just a little bit brighter when Elijah came into it. The color and the passion got dialed up just a little.  My strength of conviction on certain things became a lot clearer, because they are now a part of my personal life.  It's a lot.  Hopefully, it's a lot, but in a good way, because as I said, I am forever changed and I can't go back.

And I can't go back on the million calories I consumed on these cakes:



Monday arrived quickly and the reality of Christian being a full-fledged preschooler started setting in.  All night I had nightmares about forgetting that Christian had preschool, then forgetting to pick him up from preschool...then, strangely it merged to me forgetting to pick up Buddy from doggie daycare and he had to spend the night there. In the morning, (in my dream) the doggie daycare people told me I was going to have to sign up for automatic monthly withdrawls for doggie daycare since I didn't show up.  I woke up feeling terrible.  I felt terrible that I had a dream about Buddy, who has been gone for 5 months now, and that I am having nightmares about forgetting my dead dog and my son.  Needless to say, our morning ran ship-shape.  We (just Christian, Elijah and I this time) made our way through the preschool office with our orange name tag and a quick high five, then into the classroom.  I made a quick getaway this time.  Luckily, the teacher met us at the door, as I said, "I love you sweetie- I'll see you in just a little bit." The teacher shuttled him into the classroom with no tears and I thought, That wasn't so bad.  I put Elijah back in the car, got in myself and said, "Well, it's just you and me, Elijah"....and burst into tears. Again.  The damn tears. I just honestly don't expect them.  I've left Christian plenty of times at drop-in daycare and I've never once cried.  This just feels different...and more final.  This is it- he's in school now for the long haul.  And it's Change.  Change is hard for me sometimes.  I got home and for awhile the house was so quiet that I didn't know what to do with myself.  I finally pulled it together and got a ton of work done.  This school thing might not be so bad after all... My dream was all about my anxiety of Christian starting preschool and the change of schedule that comes along with it, but one thing seems fairly certain...I will not be forgetting to pick my son up. 
I was 5 minutes early.

Friday, September 10, 2010

Well, if you wanna go with the Truth, that's your call...

Let me start by saying that I have never been good at being bad.  Some may say that I'm a really moral person, or that I have good values, but the reality is that I get caught, if I'm not.  Junior year in high school:  I finally decide to have a small moment of rebellion and try my hand at ditching school.  A guy I had just met convinced me to ditch school and go to the beach with him.  I thought, You know...I never do anything wrong.  I'm gonna go for it.  What could one little day of ditching school and going to the beach really harm?  I did my best to plan it out.  I would get to school as usual, then he (who we'll call Bueller since that later became the nickname my parents gave him) would pick me up and off to the beach we'd go.  We planned for me to get back to school just as the last class of the day was finishing.  I started worrying that I was gonna get caught, so Bueller said, "Let me handle it", and called the school.  Bueller: "Yes, this is Patrick Garrett (my Dad's name) calling to let you know that Jennifer is sick today."  Then I hear, "818-555-5550" and he hangs up.  I knew I was caught! I said, "If they really believed that you were my Dad, why did they ask for a phone number?"  He said, "Don't worry" and picked up the phone again.  He called the office that he worked at (he was about 3 years older than me) and told the secretary, "I'm going by the name Patrick Garrett today, so if anyone calls for me tell them that I stepped away from my desk and will have to call them back."  I didn't believe this was going to work, but I held out hope, caught a ride home from school, and walked in the door. My Mom was on the phone but quickly got off the line. "Hi." "How was school today??"  That's when the lies started flowing.  I don't even know what I was saying, but it was a load of crock from the second I opened my mouth.  Luckily for my Mom, she knew my weak spot. Ballet.  She picked up my dance bag, took it out to the trash and said, "You're done."  I started crying and confessed every last word right then and there. 
I get caught.  At everything.   Which is why I spent my day in traffic court yesterday. 

I rely on my cell phone...and I mean RELY on my cell phone to keep my calendar and alarm me with reminders so I can't forget one of the billions of to-do tasks that I have volunteered to handle.  However, a couple of weeks ago, my phone died and was replaced with a brand new one.  The phone store synced my information for me and off I went about my merry way, unaware that everything EXCEPT MY CALENDAR synced perfectly.  So, I woke up on Saturday morning and had a strange panic go off in my head...When is traffic court...when is traffic court...I should've been reminded by now...  I ran to my computer and checked my backed-up schedule. and there it was in blaring bold print:

You missed traffic court yesterday, bonehead.

ARrrrrggggggghhhhhhhh!!!!!!!!!!!!!  NOOoooooooooooooo!!!!!! (Punctuated by a drop to my knees).  So, I trudged through the weekend and called first thing Tuesday morning (the only time I hate a 3-day weekend is when you really need to get in touch and clear something up during business hours).  After a considerable amount of frustrating time, I finally got through the phone system to find out that I could just show up at court the next day and get a walk in pass if I was early enough.  I showed up and waited about 3 hours when a man comes to the back of the courtroom and calls my name. ?  I jump up as he waves me out to the hall.  He says, "Okay.  So you had an expired registration, a suspended driver's license and no proof of insurance."  "Yes," I say.  He asks, "Did you know your license was suspended?"  "NO!"  I say, "I really had no idea that an old unpaid ticket had caused that."  He says, "Okay.  So they're willing to cut you a deal."  He says this in a hushed tone and leans in as he says it, like I'm on trial for manslaughter or something.  "They're going to waive the no registration and the suspended license if you plea guilty to the no proof of insurance."  I pause, because it sounds like a pretty good deal, except that, "I have insurance and I had insurance at that time, I just didn't have the card on me."  He says, "You do?" "Yeah."  He proceeds, "Well, the suspended license is a much more serious charge...."  I was sort of flabbergasted.  I said, "Well...umm...should I say I don't have insurance when I do???"  He says, AND I QUOTE:

"Well, if you wanna go with the Truth, that's your call."  

????????????????????? WTF! WTF! WTF!  I finally asked him to tell me straight what was going to be best for me. I mean, the registration was taken care of ages ago, the insurance was always intact and the suspended license has been handled (though I didn't yet have the proof from the DMV). The failure to appear was a mistake.  What a mess.  This mess all started occurring in December when I needed to "check out" of my responsibilities and wrap my head around the fact that my baby had just been diagnosed with Down syndrome.  It's not that I want to play that as a card for some sort of life-long pass or excuse, but that time in my life was...that time in my life and I did what I had to do to try and deal with everything in the only way I knew how.  Oh yeah, and P.S.:  Elijah was 12 days old when we left the house for the very first time to go to church and got pulled over 1 block from my house for the expired registration.  Bad country song, right? 

I just had to share the story from traffic court because I literally felt that I had stepped into the twilight zone.  It was a reminder that the law is not about Truth.  Sad, by true.  I got an extension to get the proof I need from the DMV that everything is handled, then I go back to court to prove it next month.  Should be a simple dismissal with (hopefully) some minimal fees...fingers crossed.

Tomorrow is a BIG day.  Christian starts preschool.    I'm so nervous for him... for me...will the teachers like him? Will he listen and follow directions? Will he play well with the other kids?  And like usual, he'll probably do fine- maybe even well, and certainly better than me.  Hopefully I'm not crying into my coffee after dropping him off...It is a short day tomorrow, though.  It's a chance for them to get acclimated and then the full schedule starts on Monday.  His teacher came to our house last week to introduce herself.  She had him at Hello.  She brought a backpack full of toys and she was his new best friend!  Before Ms. Stephanie came over, I would tell Christian, "It's so exciting!  You're gonna be starting school soon!" and he'd say, "I don't like school."  Sigh.  But, after Ms. Stephanie came, he was all about school.  On our way to music class last week, he said, "I don't want to go to muskick class, Mommy.  I wanna go to school!" I told him that school didn't start until next week and the cries of I wanna go to school got louder and more high-pitched. Well....I wanted him to want to go to school. Be careful what you wish for...

Charles and Christian went for a little hike today (please ignore the sturdy hiking shoes (AKA inappropriate Crocs) that Charles put on Christian...)


Elijah has been making things tough on Charles the last couple of weeks.  Maybe it's a mild form of bottle refusal, but he is just not eating much when Charles goes to feed him.  I started back to teaching this week and am totally freaked out by this phenomenon.  In a 6 hour period, he is eating sometimes as little as 5 ounces.  This is bad.  He is already a little peanut on the growth charts- 3% in weight and has dropped percentiles at each and every well-baby visit.  It's not a concern overall, because he has had steady growth on his own upward curve, but it still freaks me out because any milk refusal could be bad for him.  I'm really, really worried.  I don't know what to do.  I've been off from teaching all of August and he's only needed a bottle on the few occasions where I get to go out, so maybe it's just a form of preferring the breast...Ugh. I really hope this doesn't affect his growth negatively!  Other than that, Elijah is charming the pants off of all of us.  I got some video of him reaching and playing with toys, another exciting milestone.

Susan, the child development services person came back again this week and she seemed even more informed than last time- she certainly seems to be doing her research on Down syndrome, which I really appreciate.  I am feeling like she is going to be an advocate for us as the needs arise.  My current concern that really needs to be addressed is Elijah's eyesight.  Something is going on there and I am worried that it is something called Nystagmus.  We have our pediatric opthamology appointment on the 23rd, and hopefully we'll be able to get a little more information by then.  I've even recently started calling to see if there are any cancellations so we can get in sooner.  The one hope I cling to is that this pendulum effect that his eyes do, has reduced quite a bit since birth.  I'm praying that it is something that can continue to improve over time or be helped by some sort of visual therapy of something.
Back to Susan...I printed out a flyer called "How do I talk about Down syndrome?" and handed it to her. I told her that it was something I found very helpful at the beginning and that I thought she might find it helpful too.  I told her that I had a lengthy conversation with her program director, Linda, and that perhaps she could share it with Linda as well.  I hope that she will read it (she was already perusing it while I explained) and that she will pass it to Linda.  I explained in my last post that inaccurate language in reference to a child with special needs can be incredible dehumanizing and hurtful, and I think it's important for people who work within the special needs community to be aware of the power of their words.  I hope it will be a subtle, but powerful communication to Susan and Linda for starters. If you'd like to read the full brochure, click here. (Although I gave the brief explanation in my last post.)

Because I think a little guy like this deserves to have the language right:


Okay.  I need to end now.  I just stepped on a  bug.  A BIG bug.  Barefoot.
I need to go freak out...

Monday, September 6, 2010

Fresh Start...and 101 other things on my mind

Goodbye "Hunting Coat Red" and Hello "Glacier Blue"!! There is something about a freshly painted color that breathes new life into a home and inspires me to de-clutter, both in the home and personally. Our living room got a long awaited update.  I have been craving a change in our house since before I was pregnant with Elijah, but never got the chance to jump into one before the news of my pregnancy.  So I vowed that for my summer project I would paint over the red walls and re-cover the dining room chairs.  In keeping with my tendency to procrastinate, I realized that summer is over and I start back to work and Christian starts preschool next week, so I'd better get on it! 

We've loved our red walls, but it was time to say goodbye!  Here is an old photo (since I was too hasty in getting started and didn't get any official before photos) of the dessert table I did for Christian's 2nd Birthday (The "Elmo Chic" party...that's chic, like sh-eek, not chick) and then a cheesy photo of me from Christmas time last year where you can get a sense of the red:



The last of the red, mid-makeover:




The sad, sad, I-was-in-denial-about-how-gross-these-had-gotten chairs, Before:


And NOW....for the good stuff...

The After:


(My nature inspired apothecary jars- corks, shells, and moss!):


The chairs have new life!!! And thanks to Joann Fabrics 50% off sale, it cost me less than $50 to do all 6 chairs! (I love a good bargain!):


There is so much more light in the living room and dining room now, and it even seems bigger.  It is still a strange adjustment since we've lived with the red for so long, but it's an adjustment I'm loving to embrace. Thanks to my mini makeover, I'm feeling ready to focus on de-cluttering the junk in my life...anything that drains my energy is going to be minimized or eliminated altogether, if possible.  Life is too short.  I spent a lot of my life on wasteful, dramatic people and situations and I'm re-committing myself to making sure that my energy is spent where it is being replenished.

Regional Center.


Okay, so I am getting the crash course on being an advocate for my son.  Our regional center coordinator finally returned to work, to a voice mail full of messages and an inbox of emails from me.  He actually did return my calls fairly quickly, which was a relief.  He asked me to give it to him straight.  So, I told him that while the Child Development Specialist (CDS) was very kind, she had told me multiple times that she had not worked with babies as young as Elijah, that she did not know much (or anything, it seems...) about Down syndrome and that I thought we might not be on the right track for helping Elijah reach his milestones.  He said he was going to talk to our CDS's supervisor and would get back to me.  Within the hour, I had a voice message from Linda, the CDS's supervisor.  I ended up talking to her for over an hour and she assured me that Susan (our CDS) had worked with many, many babies (a "miscommunication she said. That Susan simply meant that they didn't normally get referrals for babies this young through Regional Center, but that didn't mean she didn't work with babies that young in general. ?? Which still doesn't totally add up, because when I asked Susan how old the babies are that she normally works with, she said 5 and a half to 6 months, and didn't clarify anything additionally.) To the Down syndrome experience, she said that not everyone can be specialists in all areas and developmental delays, and that if there is something Susan does not know, it will be her job to get informed and help us in that area.  Okay. I don't need an expert on Down syndrome, but I would feel more comfortable if we were working with someone who acted like she knew more than me.  Lastly, Linda confirmed that the only services we have been recommended for right now, is once a week with the Child Development Specialist...no OT or PT.  Apparently the CDS will reassess Elijah at the 6 month mark and make recommendations at that time for any additional services.  She told me that OT is only recommended if there are feeding issues, (which, Thank God, Elijah does not have. He is nursing and eating well) digestive problems (again, no...he rarely even spits up), or tracking issues. Now, Elijah does have some tracking issues, but because he is so young, they want to wait to see if it is just a developmental delay (it is improving) or if he receives a recommendation from the Pediatric Opthamologist (who we see at the end of the month).  As far as PT goes, they never recommend it before 6 months anymore unless Torticollis is involved. What concerns me most, is whether the Regional Center is making recommendations on what Elijah needs most, or whether they can save some money by delaying his therapies.  I had to do a little bit of back-pedaling so that Susan does not get in trouble and had to make sure that I was clear that my grievance was with the recommendation and not the specialist.  However, I have decided to give it a month's time to see what Susan helps us with.  Linda assured me that Susan can help with basic tummy time exercises to help strengthen Eli's neck and upper back muscles, and she will recommend additional therapies as soon as they become necessary.  We'll see.  I had an opportunity to talk to an Occupational Therapist last week.  She is a friend of a friend and she gave me an invaluable amount of information.  It truly helped in dealing with the RC coordinator and even Linda. I'm still a little bit uneasy, but since Elijah is hitting more milestones, I'm okay to sit with this for a little bit.

There is one additional small issue I have, that I'm considering addressing: Throughout my conversation with Linda, she kept referring to babies with Down syndrome as "Downs Babies" and even us as "Downs Families"...apparently we have Down syndrome now too... It doesn't bug me so much from friends and family who just don't realize the difference, but coming from someone who works regularly with special needs, you would think they would be sensitive to the language.  The DSALA included a great flyer in their New Parent Handbook called "How do I talk about Down syndrome? A Language guide for Family, Friends and Others" and I'm thinking about sending her a copy.  Some of the highlights from the flyer that I think are so well put include this list of poor word choices:
A Down(s) - A person with Down syndrome is not the disability. There are many other things that should, and do, define a person.  It is dehumanizing and strips people of dignity when they are referred to as their disability.  Instead of saying "He is a Down's baby" or "She is Downs", try "He or she Has Down syndrome."
Down syndrome child/baby - This goes back to referring to the person first, not the disability.  This is one of the most common misstatements made and often  causes parents to cringe, at least inwardly. (This is where I interject an enthusiastic "True!") For example, we don't say "a diabetes child," or "an asthma person", so eliminating this reference is critical.
Normal Kids - Please realize that we perceive our children as being pretty normal kids.  Comparing them to normal children implies that a child with Down syndrome is something less than normal.  Try using, "Typically developing" or "non-disabled child".
"They" as in "they are so loving: they are always happy" - Don't generalize about people with Down syndrome. "They" are not all alike. Much like non-disabled children, kids with Down syndrome have a full range of emotions and will mature and grow into adulthood.
"How mild/severe is it?" - A person either has Down syndrome or they do not. Down syndrome is not an illness. Having Down syndrome does not mean a person is sick.
Suffers from/Afflicted with Down syndrome - Our children are not suffering or afflicted. We must instill  a great sense of pride and self-esteem in all children, so our language must show that Down syndrome is not harmful or terrible, or anything to be ashamed of.
Yes, I once thought a "Rose is a rose by any other name", but it turns out that words really do convey power, intention and meaning. It seems worth getting it right.  I'm going to start by handing Susan (our CDS) a copy of the flyer, and by gently telling her that I found the flyer helpful in using sensitive language. (She also has been using most of the terms listed above .) I may suggest she share it with her co-workers, or perhaps I'll send a copy directly to Linda.  (I think Linda's strong New York accent made the incorrect terms that much more grating.)

And NOW....for the amazing Elijah's new tricks...He's rolling!!!  Here is a video from yesterday - since then he has decided to declare his major in rolling...with a minor in cuteness.

The rolling is wonderful, with one exception: He likes to sleep on his tummy and comforts easily while there, but then rolls right onto his back and is stuck.  But, apparently the fun of rolling outweighs the comfort of belly-sleeping.  Hopefully he'll get the hang of rolling the other direction soon so he's not perpetually frustrated.  The other milestone that he's gotten the hang of, is reaching for toys.  At first I thought it was just a fluke that I saw him holding onto a toy from his playmat gym, but sure enough I've been witnessing him reach out...the toy bounces out of reach over and over again, and then finally...success!  It must be so frustrating:  you see what you want... you reach for it...it moves just out of reach...you try again and hit it, but can't grab it before it swings out of reach again...It's hard work being a baby!

I'm jumping into the world of Down syndrome these days and hoping that some involvement will be a positive thing for me and my family and that maybe, in some small way, we can make a contribution to something that effects us so personally.  I recently wrote a post about Ds research.  While I'm glad that I don't have to make any decisions about treatments yet, I do support the research that could help the late in life neurological decline that comes with Ds, as well as in improved ability for speech and memory.  I've been asked to be a part of the committee for the DSRTF (Down syndrome Research & Treatment Foundation) and I gladly accepted.  They are putting together a fundraising event (right up my alley)  so I'm excited to be of assistance.   Also, next Saturday is the New Families BBQ hosted by the DSALA (Down syndrome Association of Los Angeles) and I'm excited to meet families we haven't yet met, and spend some time with those we are getting to know.  It is being held at Gail Williamson's house, who is the President of the DSALA, and the one who hooked me up with the photoshoots for the new DSALA materials as well as the "Down with You" book (Which is out now! I haven't seen it yet, but hear it's amazing.  You can order a copy here.)  Lastly, I'm gathering information and preparing to start a team for The Buddy Walk L.A. If you live locally, I hope you'll consider being part of my team to raise money for ongoing programs and support for families touched by Down syndrome! (There will be live music, pony rides, games, crafts...and DISCO (?!) I plan on dusting off some of the ole disco moves I learned in my disco classes circa 1981.  Oh yeah..watch out!) All team members get a t-shirt and the satisfaction of doing something for a good cause! Plus, you can help me think up a rockin' name for our team! Suggestions??

That's all for now...seriously? could there be any more?  I've gone on and on, but it was a busy week!

Saturday, September 4, 2010

Busy Week

It has been a jam packed week, but there is one main reason my time has been fuller than normal: the living room painting project.  I have been wanting a change for our living room since before I was pregnant with Elijah, and though I loved the red walls that we chose 6 years ago, it is time for something new. Something fresh.  Glacier Blue.  I think it may actually be the perfect pale blue.  I'm still in mid-project and into day 4 (almost 5) of the painting.  First there was taping, then priming, and now painting...with a little priming and taping left to do in one corner because I needed to start getting some paint on some wall, somewhere or I was going to lose my motivation.  It's a 180 degree change and I think I love it.  I hope it doesn't read too bathroom blue or baby's room blue, but I almost don't care if it does, because it makes my whole house feel lighter, and I just feel serene looking at it.  Much more to come on this, when the project is complete.  There will be before and after pictures...  Well, there will be after pictures.  I got a little too excited and started priming before I realized that I didn't take any before pictures.  But, I'm sure I have some photos I can use that show off the red before walls!

Just to make life even more chaotic, fun and challenging, I agreed to have my youngest nephew spend the night at our house while my sister and brother-in-law were out of town.  WHILE I AM UNDERGOING A PAINTING PROJECT. Smart.  ...But, the boys had an absolute blast, and actually went to sleep with no problems, so I'm looking forward to letting them wreck havoc in the morning while I make up some banana pancakes...

The pictures should tell the story:

Bathtime outside!


Clean up! Clean up! Everybody, everywhere...



...And peace in the house!

In the next post: Regional Center drama, the specialist I almost got in trouble, and the living room paint makeover reveal!