Everything and Nothing like I thought it would be

My little one is going to be starting Kindergarten- very soon. My big one is becoming a little man before my very eyes. And my life is everything I'd hoped it would be, and nothing like I thought it would be.

Today I received a call from Elijah's very first therapist. She was the first person- the first professional- that came into my home and told me that everything was going to be just fine, because Elijah is just fine. She called me today because she is working with a new Mom who is struggling with a diagnosis of Down syndrome for her baby boy. She hoped I would be willing to chat with her and then she said, "because I know the world could never be an all bad place because there are families like yours out there loving your babies like you do." Boom. That's what it is. This thing...this diagnosis is not the sum of the parts. It's a part. A small part. The rest of it is just about being a family that is out there loving our boys. I called and left a message for this new Mom. I hope she calls me, because I need her to hear my voice when I say that my sons are everything I'd ever hoped they would be and nothing like I thought they'd be. Both of them- diagnosis or not.

Elijah turned 5 less than two weeks ago. He's thriving in preschool, has a fan club at the school where he will attend next year (despite my surprise...it takes this dude even less time that I thought to make everyone fall in love with him...) and was called a "jock" by his physical therapist. I'm just in a season of enjoyment with him. He's the most communicative boy- and considering that he has a fraction of the vocabulary of most kids his age, that is saying something! He loves Curious George, Rio (the movies, the music, the birds, the dancing...and knows everything by heart), his Mommy, his Daddy, Ti-tan (Christian), loves music, dancing, school, his teachers....his list of dislikes? Pretty much hates getting his hair and nails cut. Like HATES it. Other than that, we're mostly good. ;)

We had a party and let him play til his heart was content (which apparently wasn't quite fully content by the time we had to leave...)

On Thursday, we celebrate my big boy, Christian. He will be 8 years old, which is hard to believe...

Christian...

He's getting to be such a big boy- smart, considerate, polite, kind, active, stubborn...and still loves his stuffed leopard Leo. So, I haven't lost him yet. I'm looking forward to celebrating him this week. I have a lot planned to make him smile. Treats for his class, dinner with the family, a little gift (before a bigger gift- as a trip with the family) and then in a little more than a week, a Secret Agent Birthday party with his classmates from school. Ah...this guy keeps me on  my toes, but I couldn't be prouder. And I didn't even mention that THIS happened...

He's taking my ballet class!! Now...I can't say that this is going to go anywhere, (he didn't get "my feet"), but the very sweetest, best part is that when I asked him why he wanted to take my ballet class he said, "So I can be with you." Be still my heart. I'll take it. Listen, I'm a huge believer that dance is an all-around fabulous learning tool- both educationally and socially- but if he's there mostly because he "wants to be with me," I'll take it. It makes me happier than I think it probably should, for some reason. 

This being a parent "thing"...wow. I guess it's just everything and nothing like I thought it would be...

Contagious.

My Elijah started a swim class about 3 months ago now. It meets once a week for a half an hour. Not a lot of time to learn in, but we're not exactly training for the Special Olympics, either. We don't have a pool, so there is no imminent danger. And yet, anyone who has swam a lap or two has experienced the heart pounding workout that is swimming. A perfect form of exercise for a little one who struggles to gain strength.

When I first called the swim school, I explained that my child has learning delays and is smaller than his typical peers. The response was met without a beat, "Okay, well let's have him try a class and if it doesn't work, we can discuss privates." Okay. Good plan. Elijah amazed me in that first class: He blew bubbles in the water when asked, waited his turn and tried kicking those little legs of his! So far, he's been through a few teachers due to scheduling, but he ended up in a younger, male teacher's class once everything shook down. There were 3 other typically developing kids in the class in the same age range, but the teacher was very timid. He had trouble laying down the rules. My kid--well, actually, both of my kids, sense weakness and spring. It becomes a free-for-all of behavior. An, "I can do whatever I want and the teacher won't do anything about it" buffet. But, I have a problem with that. So, I switched his class. To a more experienced, beefy, male teacher who never smiles.

What I've experienced since Elijah began this swim class, is something I've seen again and again, and yet it continues to surprise me. What I've experienced, is watching how my son's exuberance for life, his complete joy at attempting a new task, his giant smile that lights up more than just his face, begins to rub off on the people around him. The unsmiling swim instructor has clearly fallen for my kid. He gets him out of the pool last, and...maybe I'm projecting...but it seems as though he relishes Elijah's hug until he places him, smiling & safely, onto the pool's edge.

There is out and out laughter from the line of parents perched in the chairs, eyes glued to their own children, and yet, Elijah seems to steal the spotlight more than any other. His turn comes up and the instructor extends his hand and tells him to put his arms up and go....Elijah looks intently at the instructor, no one sure that he's actually going to follow directions and then, with a glee unlike I've ever seen before, throws his arms into the air with a belly laugh and jumps wholeheartedly right toward the instructor. Laughter erupts from the row of parents. It's true. It's contagious.

Today, I couldn't stop smiling. I laughed with the other parents, because our kids are so, so adorable in their swim class, and I couldn't help but be proud of my little guy. I think he's actually learning to swim. It doesn't look graceful, but he's under water, holding his breath and moving. I'm proud that he's the kid that makes everyone smile- even the beefy, unsmiling swim instructor types. At the end of class when I came to the side of the pool to get Elijah, the instructor turned to me and said, "That's one fun kid."
I know...it's completely Contagious.

Clearing the Dust

I stumbled upon my own blog today. Meaning, I was accidentally directed to it, and I realized how long it's been since I've visited this space. I miss it. I've had to put a bit of a backseat to my blogging for awhile, but since I ended up here, I might as well clear away a little of the dust.

Since it's a bit dusty in here, I don't think I'll be able to escape the "Christmas Letter" format, where I'll bore you with the highlights of my family's life for the past 3 months. I'll try to make it short and sweet:

March: My hubby had a landmark birthday, celebrated with friends and family. We had an amazing time, but zero pictures thanks to our choice of a nice, dark pub-style environment.

April: My littlest one turned FOUR! I truly can't believe it. He's come so far. From 3 to 4: He began walking, then running, dancing and attempting to jump/learn some WWF moves. He started trying to talk! Most of what he says are really more "word approximations" but he's using them and people are understanding.  He says book, up, yeah, quack quack, knock knock, light, George (the dog), school, Hi, Bye, Go, Wow, Uh-oh, car, milk, cookie, cracker, apple, Dad, Daddy....and Bob. Guess what? I. am. Bob.  He's very cheeky about it too. He signs and says, "Dad" very clearly, then signs Mom and says, "Bob." Very clearly. Then laughs. Why do I gotta be Bob???!!!! ;) My favorite thing in the world is that he will climb up on my lap, get very close to my face and whisper, "Hi...Bob...." But, the "Bob" part is said with utter adoration. So...I'm Bob. I own it.









May: My Big Boy turned SEVEN. He makes my head spin- in both the most positive and sometimes even the most frustrating of ways. This little dude keeps me on my toes: He's been excelling at math, zombie tag, talking, talking, and more talking, arguing, visiting his Principal at school and LEGOS!! So, we threw him a Lego party for his birthday, thereby making him-literally-"one of the happiest kids on earth."

               

I feel, on a daily basis, something between being a complete success and an utter failure at this thing called "Parenting"- depending on which minute of the day you might ask. I recently had a bit of a tear-session with a girlfriend. We talked through and started coming to terms with the fact that there just is no getting this thing called Parenting, "right". It's up and down and it's unpredictable. You can't succeed at it the same way as you can at a job or a project or a friendship. It's messier and it's more complicated...but, ultimately, there is no greater sense of satisfaction, either. It's a complicated thing to have your heart and soul wrapped up and ready to protect/love/snuggle/strangle/defend/teach these teeny tiny little human beings called children. Tomorrow, I have to don my Mama Bear armour again. I just received a copy of Elijah's IEP (Individualized Education Plan) today. It ALMOST has everything on it that he needs to be successful in school, but not quite. So, I don the armour and prepare for battle.

The Mama Bear armour got a little dusty too, because we had a nice stretch of cooperation from the school district for awhile. I think it's time they re-acquaint themselves with....Bob.

The Season...

My blog was left in the dust. It's not that I don't want to write anymore, or that I'm getting lazy. It's that I had to take a look at my "pie". You know...the balance pie chart- the pieces that go to work, and friends, and family, and hobbies, and health. I was listening to a famous person (don't ask me who, because those details never seem to have room in my puny brain these days) on the radio. And this super-famous person said, "You can't have all of the pieces of the pie if you want to be successful." So, I thought about that for a minute. I pride myself on making time for my friends and staying fit and eating healthfully and spending quality time with my kids and running my business and doing my jobs. Then, I did a double take. Yeah, I have a lot of "balance", but the bills just aren't getting paid. And I LOVE my business. I want it to grow and succeed...I always have. So, I realized I have to buckle down and Make Room. So...sadly, my writing..the thing that makes me feel whole and rebooted and re-energized, has to take a backseat for just a little while. I just need to re-focus, and I have been. But, I have missed this space. And while it may not be as often, or as lengthy or as pretty, I want to find a little time for it. Then, when Operation Get the Heck out of this Financial Mess We're In, starts to subside I'll find more time...

I can't catch up on it all right now, but things are good. My business is actually starting to really take off (fingers crossed, prayers logged) and my boys are in a groove. The long and short of it is that Christian would rather never go to school and Elijah would rather always be at school. At least I got one of each. Christian struggles with wanting to read, though math comes easily for him. Elijah struggles with actual spoken words and speech, though is a GREAT listener and follows directions quite well. Christian would like to physically move into The Lego Movie if that were possible, while Elijah would dance non-stop if you gave him a scarf to wave around like a crazy person and a good techno beat. Charles and I spend our time laughing at our kids antics and alternately, banging our heads at what seem to be unsolvable problems. Elijah figured out how to crawl out of the crib, and after 1 day of "Sleep training" learned easily that he stills has to climb into and stay asleep in his big boy bed despite his visions of Freedom Grandeur. Christian figured out how to use his homework assignments to complain about why he dislikes school, despite the fact that he actually does seem to have a decent time there. Plus, he is in Karate classes learning how to "become a Ninja." (Which I fully support.)  We are hopeful that one day, he may not have to do 100 extra push ups in class because he is too busy goofing off to become an actual Ninja...

I'm on an incredible high/stress attack with my business- On one side, I have Leonardo DiCaprio and Martin Scorsese sitting in front of my centerpieces at an award ceremony and on the other side I have a plane that is delayed with the 6000 roses I'm supposed to be arranging, like...NOW...for a CBS show. Though, I'll admit- this is the good kind of stress. I'll take it. Wedged somewhere in there is the Mommy who wants my kids to show up to school on Friday with cute Valentine's Day cards.. Hopefully, it won't be another 3 months before I can write again, and hopefully this post actually makes sense...It's just "The Season". You know?




P.S. If you want to put my ramblings about "my business" and "centerpieces" and "DiCaprio & Scorsese" into perspective (shameless plug), check out my new website at www.SoireeLA.com

Finding the "Me" in "Me and My Boys"

I've been re-prioritizing. I took that list of resolutions I had loftily set for myself this year and I crumpled it up and had a serious talk with myself: What is the reality, and what is the goal? Because amidst those goals- even the fully re-prioritized ones, there is LIFE. I don't even just mean the day to day "stuff"...although that is plenty in, and of, itself. I mean the LIFE that throws the curve balls. It could be the $2000 furnace that dies on the coldest day of the year or a car accident that stops you in your tracks and reminds you to say 'I love you' every. single. moment you can. I'm deep into what I need to be focusing on and riding the wave of LIFE all at the same time.

When I was 23, I was all about self reflection. I wanted to be a better person. I needed to be a better person. And I was hell bent on finding out who I am? and going from there. I can honestly say that I'm grateful and glad that those were my early years...because there sure isn't time to do that stuff as a Mom of two, with a business and a job and a kid (and sometimes even kidS) that need somewhere between a little and a lot of extra help.However, I'm back in a season of seeing myself and what I'm willing to live with and what I wouldn't be able to stand letting "be".

I'm a strong personality. I have "opinions" about almost everything, and even some that I've caught myself weighing in on, which I really have no knowledge or business weighing in on...I've become aware of it and have realized that I'm not okay with that status quo. So, I'm trying to take that breath, wait that moment, or not share "how I feel about it" each and every time. I'm a work in progress. It's humbling.

There is "stuff" going on right now, and I've put off writing a lot this last month because it was going to be the Mother-of-all-posts otherwise, and frankly, that goes against my instinct to talk less and listen more. So for now, I'm leaving it short and sweet: I want to be more than I am, for me- for my family- for my friends, but it's not an overnight process. In between my "me work", there is LIFE. Basically, I'm struggling with accepting my shortcomings and then defying them all at the same time.

I can't end this post without just a quick Halloween photo. My firstborn is and always has been the brain behind any family costume idea we have. This year, he wanted to be a Police Officer. This surprised me, but then I got the real scoop: "A Police Officer has a walkie talkie!" (Cue the relief that he didn't say "gun") When I asked what his younger brother should be, he replied without a beat. "Elijah should be the bad guy." So, here it is.

I went as an FBI agent, which now seems especially appropriate. More life investigating to do.
To be continued...

Rest and Reflection

I wrote a lot in August. There was a lot going on and I needed my space to vent it all out. Life has moved on, as it does and some of those past situations have had resolutions, and some are just... marinating. Quick update: My last post (Dear Teacher) felt necessary to write. We'd had a nightmare of a time at the first preschool that Elijah was placed in, and I was armed for Mama Bear protection at the new school. Let's just say that Elijah's teacher did not appreciate my letter as much as many of you did. She asked to have a word with me and started with, "Just so you know, I stress out easily." I said, "Oh....I'm sorry to hear that." (Wasn't really sure what to say to that one, but was actually kind of appreciative that she mentioned it. Good info to know.) The she said, "I need to ask you not to undermine my knowledge." (?) She continued, "I read your letter." I said, "Oh! Absolutely. I'm sorry that it seemed like that is what I was doing, because it certainly wasn't my intention. I assume you are in your position for a reason." She seemed to visibly relax and we moved on to new topics.  I thought long and hard about what she could mean by her statement. I suspect that my short sentence about what Down syndrome is could be taken as condescending. After all, she is a preschool teacher for a special needs class. She's been well educated in Down syndrome, right? Well...that's where I see a gray area. What a special ed teacher sees as ample education in a specific area seems downright lacking to a parent who lives it every single day of their life. Has large communities of people and friends who live it every single day of their lives. Then add a dash of super-ignorant comments by people in fields that are "supposed" to be knowledgeable about Down syndrome and it equals one cynical Momma, who feels it's necessary for a quick re-explanation. Just in case.

The teacher seems to have come around, and I have relaxed a little. Elijah is loving school! A friend of mine who is a teacher AND has a daughter with Down syndrome said (after I told her the teacher's response to my letter), "She'll never tell you, but I guarantee you taught her something." I do hope that is true, as my intentions were definitely not to attack her, but to have her understand my son a lot better. Charles and I laughed about the situation a little later, because I KNOW that I am intimidating. I don't try to be, but I have a strong personality that can be as much an asset as it is a defect. I can giggle about it because I know I'm a work in progress.

Christian is settling well into First Grade. The first week he lost his lunchbox every. single. day. of. the. week. However, come week 2 he was into the swing of things and hasn't lost it since. I hope I'm not "jinxing" myself by putting that out there!! His last words on the subject of first grade were, "I'm doing like WOW in first grade, Mom!!" It seems we don't have to worry about his self confidence much.

Recently, a close friend of mine called to tell me they are expecting a baby girl who has been diagnosed prenatally with Down syndrome. I wrote about it here. I found myself on a rollercoaster of emotions in the few days following my talk with her. We were texting back and forth and she was going through the natural process of dealing with that kind of diagnosis- wondering if they should consider adoption, etc. My stomach was in a pit because I know that there are joys to come for my friends if they just settle into what is, but I also knew I had to let her get there on her own. I thought at first that if I could tell her everything I wish I would have heard, that she would be able to instantly turn it around and see it for the blessing in disguise that it is. But, I also know from personal experience that it just doesn't work that way. She and her husband ARE coming around, but they need the time to do that. It's a process. One of last messages I got from her was a Birthday greeting, "Happy Birthday from a Momma who is starting to feel excited again." Best Birthday present this year. Hands down.

On the subject of Birthdays, I did have yet another one this year. I am now officially Forty two. The number 42 gained some popularity as the "Answer to the Ultimate Question of Life, the Universe and Everything" from the Comic Science Fiction series The Hitchhiker's Guide to the Galaxy. My brother told me that "42" was the answer to that ultimate question in the first novel. So, I Wikipedia'd it. (Wikipedia'd- Jen Slang; verb; To check what Wikipedia says about the topic when accuracy isn't all that important and you just need the gist of it.) Wikipedia told me that, in fact, the author just made up the number at random, because he needed an ordinary, mundane number. Yes, 42 doesn't have the shiny, new-decade appeal that 40 did, or the youth and freshness that 22 did (Plus, 22 is my favorite random number. I often say things like, "I told him about 22 times!" Which is totally ridiculous. I would never, nor could ever say something 22 times...at least not in a row. That would drive me crazy before I got there. But, I digress...)

My birthday celebration this year was indeed just a little ordinary and mundane: a combination of feeling taxed out as Mother with little time to myself, a little birthday dinner ruined by a grumpy old man at a neighboring table, and a dash of family drama. I left the scene with the understanding that my kudos this year were going to be in the form of inner peace due to an additional year on the planet. I've learned more. Pushed myself harder. Plus, I have a new year to look forward to, and I plan to make 42 the year of my own, personal answer to the Ultimate Question of Life, the Universe and Everything. Bring it on.

Then, there was THIS:



We got away as a weekend together with my parents and about 200 other people. It was a weekend called "Our Own Family Camp" put together by and for Families who have a child with Down syndrome. The lodgings were cozy (cabins with electricity!), meals were served (3, full square meals a day!) and there were a ton of activities to choose from. I unplugged for the weekend and just breathed in the fresher, cooler air.



We canoed...



Managed mischief...



Enjoyed bunk beds (Well... Christian enjoyed bunk beds, the rest of us had a hard time remembering what the appeal was...)



Took in the views and cherished the wide, open spaces...



Tried our hand at something new... (Not Charles. He enjoyed being "Not New" at this particular skill. :)



Smiled from ear to ear watching our youngest take interest in just about everything camp had to offer...



Had moments of solitude...



And joy...



And learned to kick everyone's butts at Foosball. Actually, just Christian. I am perfectly comfortable with being unable to kick anyone's butt at Foosball. Now, Scrabble on the other hand? At that, I am not shabby. My favorite memory from camp might have been those quiet nights after the boys were asleep. My parents and I sat out on our patio with a smuggled-in bottle of wine (Yes. We totally got caught. I ALWAYS do. This is why I usually don't do "bad" things...) and played Scrabble. As Charles likes to say, 'I have an uncanny knack for managing 56 point words out of 4 letters.' Listen- it's all about the points and less about the fancy words, babe.



We completed the camp experience with traditional campfires, skits and smores. I participated in an audience participation skit, to rave reviews from my 6 year old. Apparently, Mom getting up and making a fool of herself goes over BIG with these kids...

It was rest with some reflection and exactly the kind of family get-away we needed. We came back and I finally had the feeling that I'd been chasing for the last few weeks: the feeling of being re-energized and ready to go for the new school year. Plus we haven't had any lost lunch boxes since our trip, so it looks like I wasn't the only one who needed a getaway to rest and reflect...

Dear Teacher

Elijah started preschool today. We had a truly nightmare experience at the first school he was placed at, where I found myself constantly wondering if there was a hidden camera and I was being "Punked" somehow. So, Mama Bear roared to life and I got my baby bear a new school, with a better suited program. The school itself is a stark contrast to the school he was originally placed at. Here, the office staff is lovely, the Assistant Principal invited me into his office to discuss what would be best for Elijah, and the therapists who will be providing his services, actually called me to tell me when they will be seeing him!

However, today didn't feel great. The teacher that I met on the tour last year is gone, and along with her, the program I thought was so well suited for Elijah. The teacher who has taken her place is young and green, but full of energy and creativity. I'm not totally ready to write her off, but I am very disappointed in two things: 1) I don't agree with the program. It doesn't feel developmentally appropriate to me, and there is no time in the classroom to be working on his Imaginative play skills, which is something he is lacking and I know would improve with peer modeling. 2) She is already underestimating my child. Sigh.

I received a packet of information and most of it is about trying to get to know my child better. At the bottom of one of the sheets, it says, "Please tell me, in one million words or less, if there is anything else I should know about your child. Feel free to brag! Use the back (of this page) if you need to." So, I thought I'd take her up on it.

In well less than one million words, here's my version of "Dear Teacher":

My child is frequently under-estimated. Elijah doesn't yet have words to communicate what he knows, and because of this many people assume he does not understand. That is inaccurate- he knows much more than he lets onto at first. Today, after school, you asked if we had considered placing him in the Preschool Intense class environment (for moderate to severely disabled children). This shows me that already-on his very first day of school- you have underestimated his abilities.

My son, Elijah, has Down syndrome. I don't expect you to be an expert on every special need that exists in your classroom, but because of my son's diagnosis, I have become an expert on him. Let me tell you a little about what this means: Down syndrome is a mild to moderate cognitive delay brought on by the presence of an extra 21st chromosome in each of Elijah's cells. The extra genetic material causes a few other things that add challenges to his abilities- things like delayed speech and gross motor skills. Despite the extra challenges that Elijah faces, he is motivated to learn and explore, and he slowly, but surely, is conquering each of these hurdles. He needs some modifications for learning, but mostly, he just needs people who believe in him.

Elijah has a great sense of humor, seems intuitive to others' feelings, is affectionate, bright, and adores his older brother. He has an almost Superpower ability to make people fall madly in love with him. He also learns things a little more slowly, but this pace makes our family slow down and take a deep breath more often than we would have before. He's taught me not to ever take for granted what comes easily to me, and shown me that persistence and perseverance done with a smile, conquers almost all. I sometimes wonder if he will teach me more than I'll ever have the chance to teach him.

I look forward to partnering with you in Elijah's education. I realize that I can come across pretty tough at times, but I just want my son to be seen and accepted for who he is and not seen for just his diagnosis. I want him to have opportunities equal to other children his age, and I want him to learn the skills he needs to accomplish his future dreams. I want what every parent wants.

For now, I am his voice.