Monday, November 29, 2010

Etiquette, Milestones and a crappy $17 photo

So, how do you go about being true and honest with your feelings and actions, but also avoid making someone else feel badly?  It's a fine line, right? I'm on the brink of having to have some difficult conversations and have decided to conduct them via writing, so that I can organize my thoughts, make sure that I'm clear and avoid any haphazard emotions flying around unattended.  First and foremost, I need to write a letter to Christian's preschool teachers. After a week and a half of stress over a Parent-Teacher conference, followed by a couple of professionals assessing the situation, we've moved past it.  The director of the school gave the teachers the short story conclusion based on my conversation with her, but I'm having a LOT of feelings all wrapped around this and feel that some of it needs to come from me. (I plan to cc the director as well so there is no more she said this, she said that going on.) I also ran into the Mommy and Me teacher that seemed to fuel this whole thing, while picking Christian up at school today.  She was very nice, as always, but I felt there was...I don't know....energy behind it? I could be projecting.  However, it was a reminder and a confirmation that I also need to have some dialogue with her.  After all, I have a public forum (my blog) and while I don't use names anymore unless I know someone is okay with it (lesson learned, thanks to my Ex), if the person I am talking about happens across my blog, it could be....uncomfortable.  Additionally, I happen to REALLY like this person (the Mommy and Me teacher).  I really don't like how much stress it ended up causing me and my family, but I know for certain that her intentions were pure and coming from a genuine place of concern (even if I believe the concerns were misplaced.)  At the end of the day, it would be nice to retain a great relationship with all of the teachers- I like them. But here's the thing: I like my son, MORE.  I hope it doesn't have to be an either/or situation, but if there is weirdness remaining, then I side with my son.  period.

This weekend was amazing- it actually felt like a real weekend for the first time in a long time. I took Christian on "a date" to see "Tangled" at the El Capitan Theatre in Hollywood.  He loved it.  We started the adventure with a private meet and greet with Snow White!!! Thanks to a friend on "the inside" we had a chance to meet Snow White before the show began and take a few pictures.  Christian actually really got a kick out of it and later that day said to me, "Mommy, your hair wants to be black."  I said, "Why?? Is it because Snow White's hair is black?" He said, "Mm, hm. Snow White is pretty."  He's a lady killer already!   Once our meet and greet was over, we were led to our seats and I snuck out for a second to grab some popcorn and drinks.  The movie is shown in 3D, but those glasses stayed on him all of 5 minutes.  Then he watched the rest of the film, blurry pictures and all- sans glasses.  As all Disney movies are, there were some scary parts, but he seemed to do fine with them.  There was one part at the end (and I'll try not to spoil it here) where a Mommy takes a long fall. That one has stayed with him.  He has commented a handful of times since the movie about how "The Mommy fell down a long way."  I explained that she was a very bad Mommy. Christian chimed in, "Yeah! She's a bad guy," then said, "You're a good guy, Mommy."  Thank goodness. Whew!  I made the good guy list.

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Elijah's been having a little fun too these days with new milestones!  We started him on solids about 2 weeks ago and he seems to love it.  He's eating well, and minus a little bit of tongue thrusting, is getting a good serving daily.  It's time to move on to some new flavors, but I have been having a really hard time juggling my schedule and adjusting to two additional feeds a day, plus having enough foresight to have all ingredients ready to go.  When Christian was a baby, I started him on jarred baby food, because there is such an abundance of choices, including organic ones.  However, we moved to Australia when he was only 7 months old and I found that the selection there was minimal.  They do a crazy thing Down Under...prepare to gasp....They. make. their. own. baby. food.    ...................I know!!  As in, everyone. Not just the hippie, granola, vegan types.  So, in order to give my baby something other than just applesauce, I started making my own too. You know what? It was easy. I'd cook a couple of times a week, freeze the left overs in ice cube trays, then defrost as I went.  I did it. I know it was easy. So why am I dragging my feet again?  I know once I take the plunge and make my first batch of sweet potatoes or applesauce, it'll be back in the saddle for me, but it's the getting there.... My favorite part of mealtime for Elijah, is how much Christian wants to help.  And there is major meltdown if I don't let him.  The funny part is that I think Elijah really likes it too.  Despite having to divide my attention between two, I don't feel like Christian has had any animosity toward Elijah at all.  He seems to be really balanced about Elijah, and will even ask (alarmingly, while looking over at an empty car seat), "Where's Elijah???" if I have decided to leave him home with Charles for an outing.  To coin Martha Stewart: It's a good thing.


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Also, some big news: Elijah is finally rolling from his back to his belly!! He's been rolling from belly to back for a couple of months now, but I was only seeing a roll to his side and never all the way over. However, the other day I put him on his back on a playmat on the floor and went into the kitchen for a minute. When I came back, he was on his belly! Then two days later, I saw him do it! It was very exciting!! He is also started to grab at toys with both hands instead of just one. I am anxious to get his therapies going and am annoyed that everything has to take so much effort to get the system to work. So, I'll call again tomorrow to find out what the hold up is. Again.

While many of my friends and much of the country spent this last weekend getting all decked out for Christmas, I felt like things were moving just a little too fast for me and decided to soak in my fall harvest decorations for one final long weekend before moving on. Today, the moving on began just a little. I took Christian and Elijah to see Santa at the mall. It was badly timed, though, with the Bring your dog to see Santa Day. We stood in line behind half a dozen pooches waiting our turn. We stood in front of two beautiful golden retriever Therapy dogs. They were magnificent and so gentle around the kids. I couldn't help but start tearing up. I miss my dog Buddy SO much... So, we waited for half an hour to see Santa. In line. Behind dogs and other children and Christian did great. ADD? I. don't. think. so. We finally got up to see Santa, who seemed a little tired and was kinda phoning in the Santa act. I had to tell Christian to tell Santa what he wanted for Christmas (Santa didn't ask.) So, Christian said, "A bear." Santa looked confused (probably cuz he didn't ask for a Wii), so I prompted, "A stuffed bear or a real bear?" (Because we had gone over this in the car and he laughed and said "Stuffed!" Of course. Well, he had his moment with Santa, and when asked Stuffed or real, he went for it and said, "Real." Santa laughed and said to me, "I hope you have a big cage at home!"Our pictures were far less than stellar.  Christian is going through a phase where he cannot just smile naturally and take a picture.  So, I finally tried "directing" the shoot a little and just told him to look at Elijah.  It's still not great. But, I have my two boys and Santa in the picture.  I better have. I paid 17 bucks for a crappy photo. :)  We'll try again another day...

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Thursday, November 25, 2010

Thankful

The last few days have been emotional for me.  Exactly one year ago, I had taken an amniocentesis test based on the positive results from my AFP blood test, showing a 1 in 10 chance of Down syndrome.  I've never prayed more.  I've never been more afraid to pray.  I was due to host Thanksgiving last year, but between doctors orders for no lifting and an intense desire to sink into a deep, dark hole and never come out, I forfeited my Thanksgiving hosting duties. 


This year, I took my turn and offered up our house for the 16 family and friends that were joining us.  16 people, food for an army and enough seating space for everyone poses a daunting challenge with our square footage.  However, I got creative, rearranged a lot of furniture and made it work.  I was glad to have the focus of preparing a meal and rearranging furniture.  When I think back to this same time last year and the initial reactions I had to the possible news that Elijah had Down syndrome, I'm kind of sad that I had to grieve that way.  I know it was all part of the process, that it wasn't what you ever expect to worry about, yada yada.  It's all true.  But, looking back now, I'm sad that I shed even one tear over Elijah's life.  Elijah's life Rocks.  Elijah's life makes me want to be a better person.  And Elijah himself? Well...few words can explain the pure love that he radiates.  He is perfect. Exactly as he is. Extra chromosome and all.  I'm not in denial- I know that it will be weird and challenging and shitty somewhere along the way.  I know that watching him fall further and further behind his peers developmentally will occasionally be tough.  I know that I will have battles to pick and battles to fight, maybe even more so with him than with Christian. But, I'm not there yet.  I'm Here. And Here is a place of Thankfulness.  I am so full of gratitude that my heart swells and my eyes tear up.  I'm proud of all of my boys.  Today our home and our hearts were filled with laughter, great food (and wine! Wow- thanks for the amazing selection, Dad!) and some crazy, competitive rounds of Mad Gab with the most competitive siblings on the planet. (Yeah, and Tricia's Best Friend, Kate, showed that she can seriously hang with this crowd.) 

I have a lot to look forward to this weekend.  Tomorrow, I am having a date with my little preschooler to go to his first movie in a movie theatre!!!  We're going to see Tangled at the El Capitan theatre in Hollywood.  I actually did a few shows there back when I was dancing.  They usually have some sort of stage show before the movie screens and then the movie itself.  Since I still know a few people there, we're going to get a private meet and greet with some of the princesses before the show.  I'm so excited to see how Christian takes it all in!  Also tomorrow (though I won't see it right away) is the first airing of our episode of HGTV's "The Outdoor Room".  We were chosen for a makeover on our backyard that happened and filmed around this time last year.  I was 5 months pregnant, but wasn't allowed to say as much on the show, because it wasn't "established", so I probably just look fat. Great.  Check out our new yard (which went downhill fast, BTW.  TV makeovers are a lot of smoke and mirrors, my friends) at 9:30am PST on HGTV tomorrow, November 26th! The most exciting aspect of my weekend is the free time that I'll be able to do anything I want with...No rushing around-Just some hang time with my boys is in order. 

I hope you all had a fabulous Thanksgiving- a day in which you were able to reflect on the ways your lives are blessed.
Happy Thanksgiving!!
Jen

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My last minute centerpieces came out great and the wine was worthy of some photos!

Monday, November 22, 2010

Varitated (Validated + Irritated)

After a week and a half of stress and worry that something terrible was going on with my oldest son, my instincts (that nothing was really wrong) were validated today.  A good friend of mine...and I interrupt here to say that I am feeling just a little cocky about how cool and brilliant some of my friends really are...went to Christian's school today to observe him in his preschool class. To see if there was "anything going on", as was the suspicion of a former Mommy and Me teacher we had, as well as (though tainted by the power of suggestion?) his 2 current preschool teachers. The emphatic conclusion by my friend, and highly qualified professional, was that Christian is absolutely fine!!  We don't need to be worrying about Frontal Lobe issues, or ADD or Processing Problems or ADHD...he is a typical 3 and half year old who has recently started preschool.  I am relieved. Relieved that there is nothing wrong with him. Relieved that my instincts can always be trusted. Relieved that I've had someone back me & my son up to say Everything is fine.    After my good friend visited the school, we also had a session with Elijah's Child Development Specialist (CDS).  Today we focused on Christian instead of Elijah, since Elijah was peacefully napping and hadn't been able to do so until then. Plus, I wanted her take on Christian too.  She spent about 40 minutes just playing with him. Then she asked a few questions from a developmental evaluation.  She mentioned that we could do more questions next week if we felt that it would be helpful, however, she didn't see any issues with Christian either.  Both she and my friend gave very specific examples as to why they believe he is acting developmentally age appropriate.  It is a relief and it is a little bit of fuel, because now what's left is addressing the school.  I did a little addressing today.

When I went to pick up Christian today, I left a little bit of extra time just in case I saw the Director of the school. I did.  I started by saying Thank you for letting someone come and observe Christian in the classroom. I told her that the summary of the observation was that there is nothing going on with Christian- he is perfectly fine.  I told her that I am concerned about the over analyzing that has been happening and it needs to stop. And it needs to stop NOW.  She took it very well and said she would be sure to speak with the teachers.  I told her I would like to talk to them as well.  So, now I just have to figure out what exactly I plan on saying, how I should say it and when.  It needs to happen soon, because I really don't like this feeling that I have about Christian being watched under a microscope.  I'm also planning to start interviewing other preschools.  If the teachers can ease off and keep a relaxed and happy relationship with Christian and myself, then I will let him finish out the year there, since he seems happy.  If I still feel a sense of over-analysis, then I will pull him out in January and start at a new school before he can have any negative associations build up that affect his self esteem. If he is supervised more than the other kids, what is that telling him on a subconscious level? ...Nothing good, in my opinion.  Additionally, I find myself questioning the school and it's fit for Christian, so a school search seems about right for me right now.

Lastly, I addressed something that really bugged me a couple of weeks ago.  The incident a few weeks ago went like this:  I arrived to pick up Christian and noticed on the "Parent Board" that the kids had talked about their families and if they have any pets.  I was curious, so I popped my head in and said to one of the teachers, "I'm curious....Did Christian tell you he has a dog?"  The teacher smiled and said (a little condescendingly) "Yes...but I know he doesn't, so I told him he doesn't..."  (She came to our house once before school started to meet Christian.)  I said, "Our dog died not all that long ago.  We did have a dog. And it's been a hard concept to teach Christian. He still sometimes talks about Buddy."  The teacher turned a little pale and said, "Oh....I didn't know.  Sometimes preschoolers will say they do when they don't..."  I said, "Oh. Well we did."  Flash back to today.  My friend who observed the class told me that the (same) teacher asked the class to tell her something they're thankful for.  While the first three kids could not answer the question, Christian said he was thankful for his cat. I melted upon hearing this, because just yesterday I bought him an adorable little cat stuffed animal that I thought he would like.  I brought it home and put it in my jacket and pretended to not know it was there.  Christian immediately pounced, "What's that?"
I pretended not to know what he meant, looked behind me and said, "What?" 
"That!!"
"What do you mean??...What?" and this time looked down between my legs...
He started giggling, and when I finally gave in to the game and gave him the cat, his whole face lit up.  The cat was an instant hit.  It was a heartwarming and fun for-no-reason-at-all gift and I loved how much he loved it.  So, when I heard that he was Thankful for his Cat, I melted. But, I knew that the teacher didn't know this. When I went to pick Christian up, I brought the cat with me into the classroom.  Christian was excused, jumped up to greet me, saw the cat and yelled, "My Kitty Cat!"  The teacher turned and looked and then grabbed her heart and said, "Oh...today we wrote on the board what we were thankful for and Christian said his Cat.  I didn't think he had a cat, but I wasn't sure."  I said, "Oh how cute!  Yes, I just got him this cat yesterday and he loves it."  I think she was still grabbing her heart when we left the room....
So there.
Cynical. Preschool. Teacher. Who. Told. My. Kid. That. He. Doesn't. Have. A. Dog.

I'm hoping the holiday break gives me a little time to get over this, remember that I do believe the teachers thought they were doing what was best for Christian, and that it didn't come from malice or any ill intentions.  Right now, I'm just glad to be validated but also really irritated that I spent the last week and half totally stressed out about this.  So I'm irritated... And Validated...  I'm Varitated. 

Don't you like how I can just make up my own words on my blog....
I do! :)

Saturday, November 20, 2010

Kinda wanna cry...

The week was closing with little to no fan-fare, so I didn't expect to be sideswiped by emotion today. But I was. I am. I'll start in order:

I met with the Director of Christian's preschool this week.  Since my (unscheduled) Parent-Teacher conference last week, I have reflected more and more on the inappropriateness of the "concerns" brought to my attention.  A meeting that I thought was supposed to address how Christian has a hard time listening and transitioning from the outdoor playtime back inside and his sometimes quirky communication-style morphed into a meeting where words like "Frontal Lobe Issues", "ADHD", and "Child Psychologist Observation" were thrown around. The cherry on top was the handy "ADHD and your child" brochure that was handed to me at the end...  So, I requested a private and confidential meeting with the director of the school to discuss it.  The first problem was that the director had bad information. She was told that I brought up a concern about ADHD and requested that I have a child psychologist come and observe Christian in class ! (???) Um, No. I was the first to say out loud the word "ADD?", only after "Frontal lobe issues" and "Attention issues" were placed on the table.  I AGREED to an observation, but was NOT the one to suggest it.  Once those facts were cleared up and other details were filled in (i.e. the handy ADHD brochure that the director knew nothing about...and dropped her head to her hands when she did) I made clear that my concern is that Christian is not labelled as anything at this early age, so that these words do not affect his self-esteem.  The director could not agree more.  I didn't get a huge sense of relief out of the meeting, but I did feel that the director has called her attention to it and we'll re-assess where we stand after I have some professional opinions in the next couple of weeks. 

On Friday, I made my way back to Club 21, a resource for families and children with Down syndrome.  Friday mornings are the "First Steps" program, which is a playgroup for babies 0-3 with Down syndrome.  It's a great place for the Moms and Dads to connect to others also and it has been extremely helpful for me.  Due to a jam-packed schedule, I had been unable to attend with Elijah for about 2 and a half months.  I was excited to see everyone and managed to get myself there despite dirty diapers, preschool drop off and a lack of cream for a coffee... Each week Club 21 provides a professional of some sort to be a resource for us. Sometimes it's a Physical Therapist, sometimes an Occupational Therapist, even a Sign Language Instructor.  This week introduced me to someone I have sort of "met" before...See this post for my online run-in with her.  She is basically an outspoken Mom with a teenage son with Down syndrome who rubbed me the wrong way while I was pregnant (and the pregnancy hormones weren't helping either...), and although I wasn't formally introduced to her title, I think she's also an Occupational Therapist?  Anyway, she was playing with Elijah and doing some "OT while she was at it", when she said, "He's still pretty weak, isn't he?" I remarked that yes, the PT who evaluated him said he was moderately low-tone (which is considerably lower than a typically developing baby and lower than some who are also affected by low muscle tone.) Then she said, "He reminds me of my Gabriel.  Luckily they didn't say anything to me when he was a baby, but when he got older, our PT finally admitted that he had been the lowest tone baby he'd ever seen!"   (I'm thinking, Does Elijah remind you of your son because he seems so low toned, or were those two separate thoughts: He reminds you of your son. Your son had very low tone. ??)  That added insult to some injury when I saw how tiny Elijah looked even in comparison to another baby with Down syndrome only one month older than him, who was also moving around significantly more than Elijah is.  It didn't bum me out a whole lot, but it was one of those things that I "took in".  I took it in and filed it away, and it probably wouldn't have bothered me, except that today got factored into the mix.

Today was a Birthday Party Extravaganza day. Two parties in one day. From bounce house Heaven to Batman silliness, we trekked the city for a couple of Christian's preschool friends. All went well at our first party. It was unstructured, pure-fun play (personally, the kind I think is necessary for 3 and 4 year olds) with a few of Christian's classmates from school.  I was already friends with the Birthday girl's Mom (even prior to the start of preschool), so it was a fun one to be at.  I did notice that a few of the kids, (mostly girls) seemed to already have pretty tightly bonded friendships. It was the first time that a flash from the preschool meeting came to mind...(where I nearly fell off my chair from shock at the question, "Does Christian have any friends?")  In witnessing the cute little girls holding hands and wanting to run to each play station together, I began to question if maybe Christian hadn't yet formed the kinds of friendships the teachers were talking about.  However, Christian had an absolute blast and seemed comfortable and happy, which seemed to be the most important thing.  We headed back to our end of town and dropped off Daddy and Baby Elijah, so Christian and I could skip over to the Batman party at My Gym. This party was for a boy who had been in the same Mommy and Me class with Christian 2 years ago.  He started a formal preschool class last year and is not in Christian's class this year.  I had planned to blow off this party, but the boy's Mom cornered me on the way out one day: Is Christian able to come to the party?  I tried a weak excuse but she caught me off guard and I ended up agreeing to bring him. Besides, Christian LOVES Batman, so I thought Why not? 
Case and point:

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We got to the party and as I looked around, I realized that Christian didn't know almost anyone.  It had been over a year since Christian had seen or played with the Birthday Boy, and the only other person he'd known was a boy named Jason from his Mommy and Me class last year.  Jason's Mom kind of unravels me in a not-so-good way. (Click here for the moment that immediately changed my relationship with her.)  In a nut-shell, Jason's Mom terminated a pregnancy based on a Down syndrome diagnosis. No other extenuating circumstances, just the Ds.  It's hard not to see it as a decision based in fear and ignorance.  I try hard to see that each person is entitled to their "choice", but when the choice feels like it somehow invalidates my son's existence, it's hard. (Notice I said "feels like" and not that it "does" invalidate anything about him.) Anyway, ever since my conversation with Jason's Mom on the playground last year, she has become my biggest fan.  She goes out of her way to say hello, is always very friendly and even recently suggested that we should get the boys together for a playdate.  I "agreed", figuring I could blow it off without notice, since our boys aren't even in the same class. However, life keeps bringing us together.  The day I was snack Mom last week, she was snack Mom for her son's class (right next door). We show up to the Batman party and there she is with her husband and 3 month old baby girl.  In the course of talking with her, I found out that her 3 month old baby girl already weighs more than Elijah does at 7 months.  Then, I watch as Christian acts like a weirdo through out the entire party. Hands in his mouth, anti-social behavior....sigh. He didn't really know anyone, but still...I wonder again about what's happening at preschool that I haven't witnessed.  I'm not going to allow myself to stress ANYMORE about what's going on with Christian.  It is pointless. I will follow up based on the parent-teacher conference I had, and then call it a day.

Each situation on it's own wasn't much at all, but by the time I got home from the Batman party today, I wanted to cry. And have.  a little. I know my boys will be fine.  Life won't be without challenges- it never is.  Every once in awhile however, a little weight needs to be lifted and, for me, a good cry can do that.  I haven't had a good cry about it all yet. Maybe the moment will pass and I won't get the full release, but even a "Kinda wanna cry" moment can alleviate enough of the emotion so that I can pick myself up, brush it off, and move onto the things that really need my attention....like the glass of wine and box of brownies that are calling my name...

Tuesday, November 16, 2010

Expectations, Part III- Chris' Story

For those of you who regularly follow my blog, you know that I have started a series called "Expectations".  Sometimes expectations can be good.  Sometimes they're a bit more like goals, than something unrealistic.  Setting high expectations for yourself to be well, do well and act well are great.  It's when you start having expectations for others or how the world "should" be, that things can go quite awry.  For those of us who ended up with a child with special needs, we hold a common thread of having our expectations derailed...and it's still surprising.  Even though you think that "anything could happen", when it does, it makes you realize that you never really believed it would...  My new friend Chris has some amazing thoughts and I'm honored to have her share her story.  She blogs at a CRAZY kind of FAITH, so you can check out more of her story there.  Without further ado, Chris' thoughts on "Expectations"...

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When Jen asked if I’d write something on the topic of “Expectations” I thought it would be a breeze! NOT! What I am probably realizing (I should not say probably) is that we have had a MULTITUDE of expectations gone awry……hence, the re-envisioning of expectations has been ongoing in our home.

Our first expectation was to get pregnant. My hubby and I married a little later in life (ahem….that is, if you consider my age of 36 late!) We tried and tried the “old fashioned” way and at first it was fun. It was fun until we finally realized that it wasn’t happening. Parenthood wasn’t happening…the natural way. We investigated and tried some assistive reproductive methods, spending quite a bit of money in the process. Several years passed, I was nearing my 40th birthday, and my hubby and I started looking at the realization that if I were to actually conceive at my age, there would be a significant chance of having a child with a disability of some type. We began to weigh the risks of continuing to play the game of “reproduction roulette” as opposed to those of adopting, and decided to adopt.

Let me digress here….only to say that our family-building journey was a process of weighing “calculated risks” while understanding our financial reality (eg. With a domestic adoption, we could run the risk of birth-mom changing her mind; Guatemala adoptions were becoming sketchy and were also expensive. Vietnam was looking to close their adoption program. Children from Eastern Europe frequently have been exposed to alcohol in-utero and hence, may have Fetal Alcohol Syndrome, etc.) With these things in mind, we felt that China had the most predictable adoption program at the time, and decided to pursue that route.

In adoption language, there is a term called paperwork pregnancy. The “gestation process” for our daughter was 18 months from start to finish (we brought her home from China in July of ’07 at the age of 26 months), and 12 months for our son (we welcomed him into our family in February of ’09 at the age of 28 months). In our home-study we stated that we were prepared to accept the referral of a child with the minor special need of cleft lip / palate. We are lucky to have very good medical insurance and felt that we could handle a regimen of corrective surgeries, orthodontics, and speech therapy if the right child came along…and she did! Despite her significant bilateral (two sided) cleft lip and palate, our daughter has been the epitome of the perfect patient and is a star speech student. In fact, she was the little ambassador which led us to accept another referral for a toddler with a cleft lip and palate…our son Kai.

While we were fully prepared to work through the special need we had “chosen” to accept, we did not really prepare for the fact that additional, more significant special needs might ensue. When we received word that my son was failing to thrive at his orphanage, the apprehension started creeping in. Medical reports from China indicated that there were some significant problems, but the reports were all very vague. Against the advice from many people, we chose not to “terminate” our adoption process, understanding that there were many unknowns about our son’s status. We were quite certain that our son would not survive if we didn’t ensure that he receive medical care while in China (which was only possible because we accepted his referral and our adoption paperwork was “in process” with the China Center for Adoptive Affairs.) . We got word of his improved condition four months before we traveled to China to finalize our adoption, which happened in February of ’09.

All moms of children with special needs will tell you that NOTHING is predictable. I think that we all try as hard as we can to circumvent the heartbreak and the tears of knowing that our children will struggle (and so will we). As an adoptive parent, somehow I felt that by CHOOSING the children we were adopting we would somehow avoid most of that pain and heartbreak. Nope…… we have been so humbled. No amount of processing, calculating, etc. can prepare a person or family for whatever WILL BE. The only thing that we have to hold on to is an odd but crazy kind of faith.

And so, back to the topic of this post: EXPECTATIONS. We now know that our son has a laundry list of special needs in addition to his cleft palate (PDD-NOS [autism spectrum], static encephalopathy [brain damage], mixed expressive/receptive language disorder, psychosocial dwarfism [a growth hormone insufficiency resulting from poor early nutrition and neglect], and Cognitive Disorder NOS for starters). He also has a history of trauma which gives everything an interesting twist. For example, in Kai’s ABA (Applied Behavioral Analysis) Therapy for his autism-spectrum disorder, food / candy can be used as a strong positive reinforcer for desired behaviors. While food IS a powerful reinforcer, it is also a trigger for our son to fly into a “fight or flight” response (a rage)… largely because he had experienced profound early neglect and starvation at his orphanage. Consequently, we are learning to perfect the art of tight-rope walking in our home! 

Even IF we had expected any of these issues, we certainly would not have understood the magnitude of how they would play out in our family, or the emotions they would bring up on a regular basis. We have had to fine-tune our expectations daily. The Serenity Prayer has become my daily mantra….. “Lord, help me to accept the things I cannot change, the courage to change the things I can, and the WISDOM to know the difference.” We seriously try to live one day, one moment at a time.

Let me conclude this post by sharing the progress that our son HAS made (quite contrary to our earlier expectation I may add!) . While in China…and my son was 28 months old, not walking nor assisting in our dressing him, with no spoken language and no apparent will to interact with others, I said to my husband: “I can only hope that he’ll be potty trained by the time he is a teenager!” I am happy to report that our son was daytime potty trained about one week before his fourth birthday! He is making steady progress in speech, occupational and physical therapy, and best of all, he is interacting with those around him. He smiles and engages in life. That, my friends is PROGRESS 

http://acrazykindoffaith.blogspot.com/

Sunday, November 14, 2010

Team Elijah and the Twilight Zone

It was a beautiful day.  A perfect close to a jam packed, slightly "Twilight Zone" tainted week.  Team Elijah: a group of 21 (How perfect! It is the extra 21st chromosome that makes Down syndrome...) of my family members and friends who pulled together last minute to support our participation in this year's Buddy Walk put on by the Down Syndrome Association of Los Angeles (DSALA) for the benefit of the National Down Syndrome Society (NDSS).  In a matter of 10 days, we pulled together "Team Elijah" with a final count of raised funds at close to $2900!!!  We all got excited and put on our competitive faces, and said, "Next year: Signs, T-shirts, a float with fireworks and top prize for most donations raised!!" We got into it.  :) 

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It wasn't weird at all, by the way. I was a little anxiety-ridden that this event would somehow overwhelm me and solidify my role in a community that was hoisted onto my life. However, it was cool. I saw some pretty hip looking young adults with Down syndrome and I liked the new image I was able to file away...not just the round-faced, bowl hair-cut one that was somehow lodged into my brain. There were babies and kids with Down syndrome everywhere, and with them were large groups of people who love them. No one was looking at anyone funny and no one seemed out of place. It was a laid back event. No one was competing to finish a race- we just strolled along (the maybe quarter-of-a-mile "walk") enjoying the gorgeous weather and admiring the creative signs and team-gear that people were sporting. After we completed the walk, we let the kids play on the playground there and ride the ponies.  We kissed some of our friends goodbye, but I needed a final celebratory nod to the Buddy Walk, so I said, "I feel like I need a margarita." Charles replied, "There's a Mexican place around the corner."  (Reason #478 why I love my husband: He catalogues away just the right information when you need it.)  So everyone remaining agreed that a margarita was in order and we shuttled around the corner, grabbed our table for 13 and enjoyed.  I'm welling up now thinking about these people in my life and I want to take a minute to say a special thanks to: My parents who are always the first to say, Where? When?; my sister and her family, who I didn't even think could make it today, but who bring the love and the fun every time; my best friend, Denise (also known as KB), and her daughter and Mom, who also never misses a beat- What do you need? How can I help?; One of my oldest (in time-known) friends, Marie, her rockin-amazing hubby Lewis, and their adorable little guy Theo, who personally helped our fund raising efforts significantly (without being asked!); my good friend Mel, who always makes me laugh and has one of the purest, but also most down-to-earth hearts I've known; and my newest friend Kathy and her family- the more I get to know her, the more I adore her!  I also want to say a huge thank you to all who donated in honor of Elijah- you guys all have such big hearts and I am grateful to know each and every one of you!  As I said, It was a beautiful day and right now I'm feelin' the love.

This was the week that we also had Elijah's first Physical Therapy evaluation.  The therapist was amazing!!  She was relaxed and friendly, but incredibly knowledgeable.  She told me that Elijah is doing great- he has moderately low muscle tone and thus has quite a bit of weakness, but that he is really doing great with his head and neck control.  Most of all, she said that the fact that he is so engaged and motivated is the biggest factor in how well a child does with early intervention therapy.  She believes he will do very well and will be capable of quite a lot!  It was a very encouraging session- not to mention the fact that she showed me a couple of ways to assist Elijah, without doing it for him, that were instantly creating a desired result! THIS. is. why. I. wanted. a. professional. So, now we're back in the waiting game for the Occupational Therapy (OT) and Physical Therapy (PT) recommendations to go through, which will establish what our therapy schedule consists of.  Wonder how many calls and emails I'll have to make to get everything finalized?...

Then, there was Friday.   An unscheduled parent-teacher conference at Christian's preschool.  Let me fill you in on the back story: The day after Halloween, when I went to pick Christian up from preschool, one of his teachers said, "Christian had a rough day today."  I think I blankly blinked at her and said, "Ummm...yeah.  Yesterday was a pretty big day."  Then, because it seemed like a very strange comment to make on a day that I would guess would be hard on a lot of kids, I said, "Did he hit anyone?" No. "Push anyone?" No. She said, "He just had a lot of trouble listening today."  So...again, because I thought it an odd comment on this particular day, I said, "Is this an isolated instance or has this been happening and you're just now telling me about it?"  She said, "Well, it's been happening more and more recently."  I said, "Ok.  Well, listening is something we struggle with a little at home too. Do you have any suggestions?"  Then we somehow got distracted and the conversation was never completed.  I later received an email from her apologizing for our interrupted conversation, along with an invitation to speak with her and the other teacher anytime.  We decided we would chat Friday while I allowed Christian to stay for after-care.  When I dropped Christian off in the morning on Friday, the teacher confirmed that we would meet and said, "I was also thinking about asking Mrs. Carson to come and speak with us."  (Mrs. Carson, (not her real name), had been the Mommy and Me teacher we had for two years.  She has become somewhat of a friend, but she is also the one who had me COMPLETELY freaked out about Christian's speech.  She has been convinced that there is 'something going on' with Christian and when I texted her to say that his speech evaluation was great and that he had no issues, she was disbelieving and asked, Did they check this? Did they check that? (The answers were yes.)   However, since Mrs. Carson has given us great discipline tactics in the past, I responded that that would be great (although it seemed a little strange, considering that she is not his teacher, not in his classroom and has not observed his behavior in about 6 months...)  I arrived before Mrs. Carson did and started speaking with the teachers. 

The summary of my conversation with Christian's teacher prior to Mrs. Carson's arrival was confusing at best.  They brought up issues and circumstances that all seemed SO typical in the life of a three and a half year old.  I kept trying to stay focused to see where they were going with it all, but I really wanted to ask, AND??...  Then Mrs. Carson came in.  The conversation took a slightly different turn.  It quickly veered into processing problems and attention issues.  I told her that I really didn't think there was any sort of processing issue based on what I observe with him.  As I thought about things, I conceded that it's POSSIBLE there is some type of attention issue...but honestly, I thought this was still reaching a bit.  However, Charles and I both think that he may be an undiagnosed adult with ADD and I mentioned this to them.  As soon as I said ADD, it opened up the conversation more.  Eventually, Mrs. Casey pulled out a brochure she said that she just happened to have in her purse, entitled "ADHD and your child".   To be honest, I felt a little bit like I was in the Twilight Zone.  I haven't noticed anything with Christian that seems outside the norm of how three and a half year-olds act.  I suppose it's possible that symptoms would only present themselves in a larger, more structured group setting, but I kinda think we might be jumping the gun here even if down the line we notice bigger attention issues.  I left pretty dazed and upset. Feeling like Christian, along with Elijah, might also have to face challenges in his life.  Then, I got a little perspective.  I spent the evening with a fun group of Mommy friends at a Book Club meeting- some who have a great history with Christian.  After a good night sleep, I had more perspective. The more I was away from that conversation, and really, truly looked and listened to what Christian was doing, the less I thought there was anything of great concern.  Honestly, if they end up being right down the line, I've seen how Charles (without a diagnosis and any kind of treatment) has been able to adapt in his life.  He certainly has no trouble holding a conversation, making friends, or doing his life. (Perhaps there could have/ would have been ways that he would have felt better about his "process", but it is not my desire to psychoanalyze my husband.)  So, now in hindsight, I can't shake the feeling that Mrs. Carson doesn't want to be wrong.  She suspected a language problem (could be processing, she said) but when a speech therapist said no, she is pursuing a different avenue (the I-knew-something-was-up, avenue).  I can't shake the thought that maybe she mentioned a possible problem to Christian's teachers and so now they are hyper-aware anytime he does anything... Maybe not, but it all just doesn't seem to fit.  My experience when something doesn't "fit" has usually been that something else is going on. 

What I intend to do now, is threefold: 1) Based on Mrs. Carson's recommendation to have a child psychologist come into the classroom and evaluate him, I am going to have someone come and observe Christian in the classroom.  It is not initially going to be a child psychologist, but will be a good friend who has a degree in child development, years of experience in the classroom and a personal knowledge of what kind of kid Christian is. She'll know if he's having an off day, or if there really is something going on.  Plus, since she has the teaching background, so she'll also be able to evaluate the teaching style in the classroom, which is good knowledge for me.  2) I am going to speak with the director of the school.  I intend to tell her that I am concerned that words like ADD, ADHD, and processing problems are being thrown around so early into the year- especially when the instances sited seem incredibly typical of preschoolers (if he was never sitting down, constantly in motion, a social outcast, and a danger to himself or others, I could see a necessity to intervene so early).  While it may be nice for the teachers to have a neatly wrapped package of diagnosis, I am concerned about pigeon-holing my son so early in life, and hope that instead the teachers can just work on meeting him where he's at...  3) If I feel for any reason that Christian is not going to get a fair shake at preschool, I will pull him out of this school.  What's most important to me is that Christian is happy, confident and given a chance to learn freely and at his own pace in preschool- not micro-examined on a daily basis. 

I believe that Christian's teachers and Mrs. Carson have the very best intentions.  I believe that they care for my son.  But, I also know that people's own "stuff" and "issues" get thrown into the mix.  I don't want to be the parent who dismisses any concerns with an adamant, "My kid is FINE!!", but I also want Christian to know that I have his back.  And just because some preschool teacher (not an expert) thinks something might be up, doesn't mean that it IS. 

So. I am through obsessing.  I spent a beautiful day with my family and friends, where Christian listened to directions, was cooperative and engaged in adorable conversation, including this:
(Bathroom stall) He hears someone enter the stall next to him...
Hello??... (no answer.)
What are you? (no answer)
A girl or a boy? (no answer)
What is your name? (no answer. So, I say, Honey, some people don't like to talk when they are going potty.) 
(He says, louder,) What is your NAME???!! 
(Finally the stall neighbor responds) Is she talking to me?  I say with a chuckle, Yes. (I don't correct the pronoun.)
My name is Maria. What is your name?
Christian.  Are you a Mommy?
No. I'm not a Mommy.
Oh.
(Neighbor's toilet flushes.) Bye-bye, Christian.
Bye!

Our first Charity

Today is the day we join thousands of other people who have been touched by Down syndrome in their lives, as we come together to support The Buddy Walk which raises money for The National Down Syndrome Society (NDSS) and on the local level for the Down Syndrome association of Los Angeles.  I have butterflies.  But I also have a team of 18 friends and family members who are joining up with us to be extra support.  Even though I started rallying support really last minute, I set a donation goal of $2000- not knowing if it was even remotely attainable.  I am so thrilled to announce that we surpassed our initial goal and ended up raising over $2600 for this worthy cause! Woo hoo!

So much has happened this last week, and my head is spinning.  I have so much to write about and am looking forward to tonight when I can sit down after the Buddy Walk and get my thoughts down in writing...

A teaser of what's to come: Elijah's first Physical Therapy evaluation, a new guest post for my Expectations series, a preschool teacher who doesn't want to be "wrong", and the summary and pictures (yet to be taken) of the Buddy Walk...Stay tuned...

Wednesday, November 10, 2010

Guest Post

I recently participated in a "Find your Tribe" blog workshop through a great site called The SITS girls. The site is a blog support site and helped me find my "Tribe"...which, not surprisingly, is Mother's of Children with Special Needs.  Go figure. :) In this workshop, I was joined with some other Moms that "get" what I'm going through. None of their situations are the same as mine, but many of the feelings we deal with day to day are relatable.  I was recently asked to write a guest post for one of the Moms I've connected with-Tara. Since the topic of Expectations has been on my mind, and is part of a small series of posts I am doing, I suggested that be the subject of my post.  Tara has a great site (Three P's in a Pod)- so check out my post and stay awhile at hers to read her story...
http://3psmama.blogspot.com/2010/11/expectations-guest-post-by-jennifer.html

Tara has also been a guest poster on my site, which you can read here.
If you like our posts, give a shout out on the comments to show Tara some love.

Sunday, November 7, 2010

Raising Support

Exactly one week from today, my family and I will participate in the annual Buddy Walk, which is a fundraiser for the National Down Syndrome Society (NDSS). The NDSS helps to educate, advocate and develop support for individuals with Down syndrome.  Next Sunday, November 14th, thousands of people will meet at Santa Anita Park to help raise money and do a walk for this worthy cause.  If one year ago, you would have told me that I would be participating in this event because I have a child with Down syndrome, I would have thought that you were crazy.  When we got Elijah's diagnosis, I went through all of the stages of grief about it.  Some of that grief dealing, was in starting this blog.  I also got educated about what we might be dealing with, and because I got too overwhelmed by the medical and mental disability research, I quickly began reaching out to actual families with real-life experience.  I'm coming up on one year of knowledge about Elijah's Down syndrome. Most of the time, I feel pretty balanced about it.  But there are definitely still times that I feel a little overwhelmed.  I mostly feel overwhelmed when I'm around the Down syndrome community. This is part of me now. I am part of this community.  Turns out it's a pretty cool community, but the reality is no one really wants to be part of it.  I mean, not really.  Once you are, you realize how cool some of the people are, you realize that you have people who will "get you" on a deeper level than you ever thought possible, and you realize that these people will embrace and support you even when they barely know you.  So, while I know there will be some cool moments at this Buddy Walk, there is also a part of me still grappling with the knowledge that I belong there.  I'll admit it: About 50% of the time, I meet a child with Down syndrome and think, Ok. That's awesome. I can handle a child like that. That child is smart and adorable and wonderful. And then about 50% of the time, I meet a child with Down syndrome and think, Oh God. Are you sure I'm cut out for this? Is that really what it might be like?  It's not unlike a single woman who 50% of the time looks at her friends' kids and thinks, Oh I can't wait to have children! and then sees a meltdown or experiences constant whining and thinks, Am I really cut out for children? 

On November 14th, I'll be confronted with most of these feelings, when I join the thousands of other people (many with Down syndrome) for the Buddy Walk.  I'm just a little terrified.  To add to my inner turmoil about the whole thing, I sent out a handful of emails to some local friends asking for their support and to come and join me on the walk, and have not been getting many responses.  It's so hard for me to actually ask for support and be vulnerable about it and then not get some kind of response.  It sucks, actually. I'll make a little addendum here, because I know that my friends have super crazy, busy lives and it's not always possible to respond right away. I'm sure that everyone will eventually respond and it will all make sense, but meanwhile I'm kinda bummed out. 

If anyone reading is interested in joining us on the walk or is willing to make a donation, you can visit Elijah's Buddy Walk website page: http://buddywalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=430555&lis=1&kntae430555=EA38F7D7B4AA4B9FA21771DB771F65CD&supId=312496923 or email me for more info on registering.

On another note, we FINALLY had an Occupational Evaluation for Elijah last Wednesday!  I immediately liked the therapist.  She was incredibly knowledgeable, kind, and she complimented my home decor style...so, clearly she is a brilliant, likable woman... :)  Elijah had just taken a nap, had a full belly and I thought it would be a great hour for the therapist to assess him.  Elijah had different plans. He was pissed through the whole thing.  I don't actually think it was because of the assessment. He seemed to be acting like he had bad gas, but regardless of the reason, he screamed bloody murder through most of that hour. Joy, joy!  Toward the end of the appointment, I showed the therapist one of the "moves" that Elijah loves: He lays on his back while I hold his hands. Then I assist him to a sitting position and then he pushes off with his feet to be assisted into a standing position.  He LOVES this. He laughs and smiles, and is obviously pleased with himself. The therapist says, "Ummm...I wouldn't do that with him anymore.  It's good that he likes it so much, but....You should really wait to see the Physical Therapist, so don't do that anymore until you do."  I looked at her and said, "SEE??!! This is why I have been asking to see a professional. I don't know what the hell I am doing." (Yes, I said "hell" in my son's first OT evaluation.)   I. don't. know. what. I'm. doing. You can say, Well you never know what you're doing when raising any child, and I would agree.  Except, there are millions of books written to help to raise a typically abled child.  It might take awhile to find the literature that suits you and your child best, but there is a lot to choose from.  The population with Down syndrome is comparatively tiny.  There is also such a huge range in how each individual is affected, that you can't even get a real comparison there either.   I don't know what I'm doing, but I'm doing my best. Sometimes my best feels sadly lacking, but I do know it's all I can do. 

Oh yeah, and I had to have the babysitter give Elijah some formula (I have been exclusively breast feeding) because I am completely out of my reserve of frozen breast milk. Apparently, he was pissed.  I think he was thinking, WTF?? I did not sign up for this nonsense.  She managed to get him to take a manageable amount, but we'll see how things go.  I may be up pumping at 3am every night... 



That's the update. We're doing the Buddy Walk. My friends are MIA. Elijah cried through therapy, and he is pissed when offered formula.  However, I laughed til I cried this morning, when Christian came into the room while I was feeding Elijah. He said, "Look Mom, I have a penis." (He was clearly holding something, but my view from the bed was blocked.) I peeked over to see him holding a baby carrot, sticking straight out, right where his penis is.  I could not stop laughing.  I said, "You sure do.  You're  a funny, funny guy."  I had the thought that I probably shouldn't be laughing so hard, because I don't want to turn it into a "thing", but when he said, "I'm eating my penis now, Mom...," I lost it and the laughter produced tears.  It's been a long time since I've found penis humor to be funny, but coming from a 3 year old, it's pretty hilarious!

Monday, November 1, 2010

Halloween

I love fall.  I love Halloween. Specifically, I love them both more now that I have children.  There is something about the joy, innocence and first-timeness of it all that allows me to appreciate more deeply the wonders of this time of year.  We have acorns in our driveway...thousands of acorns...thousands of acorns that are even chucked down upon our heads by the mischievous squirrels overhead.  So, when Christian got to take home the "Share Bag" from preschool, we ended up stashing a small ziplock bag filled with a half a dozen acorns into it.  Along with the required 3 clue questions:
1) They are brown.
2) They fall out of trees.
3) Squirrels eat them.
According to Christian's preschool teacher, when the kids finally guessed "Acorns", Christian continued saying, "No!"   I think my preschooler is onto something, though. There is something interesting about keeping em guessing, right?

Our busy October was filled with all things fall and festive.  We had trips to the Pumpkin Patch...

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There was pumpkin carving...

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Christian was not so keen on the feel of the pumpkin guts...and I'm pretty sure my parents have similar photos of me and my "totally disgusted" face from many a Halloween


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The good news is that he warmed up to it!



There were parties...

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There was Trick or Treating...

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It was all as colorful and fun and crazy as I thought it would be. Except maybe the crazy part.  It was CRAZY. As in crazy, busy and sometimes stressful.  Fun was definitely had, but at a bit of a cost.  With many Daddy-free nights in October, I was juggling being Mom of two, my ballet teaching job and a very busy event schedule for my Event Design and Coordination business.  It was a lot. And I'm not quite done yet.  One more big wedding to go this weekend and then I get a little break.  Unfortunately when I'm juggling so many things, I feel like I'm failing a little at all of them. The guilt gets to me: Did I do enough with my boys today?  Did I do enough for Elijah? Did I do enough for my clients?  ...Did I do anything for me?    I guess one benefit to being an "older" Mom (Oh, God. Did I really say that?) is that I know when I'm at my limit and when I need a break- for everyone's sake.  So, at the suggestion of a close girlfriend, I took a break. A 24 hour, Mom is on a break, Break.  Our babysitter really gave me the deal of all deals to stay for one full day, while I took off with my girlfriend for one night at a near-by, luxury hotel. Room service. In room movies. Girl Talk.  It.was.Heaven.  I have no pictures or proof that this event actually happened, and considering the fact that within one hour of being home I was launched back into life-full-speed. So, it's already becoming a distant memory.  It's such a happy, peaceful distant memory though. And it came with the pact made with my friend that this WILL happen again. And it will happen with more frequency than it has in the past (never).  My friend found herself talking to her daughter about her 24 hour getaway.  When confronted with the fact that her daughter didn't want her to go, she asked her: How many days in week are there? How many days in a month? In a year? You've been alive for 6 years, so how many days is that...something like 2000, right?  Do you think Mommy deserves 1 day  off out of every 2000?  Which was met with a reluctant, "Yes."

Yeah...we'll be taking another "day off" sooner than 2000 days from now. Promise.
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