Thursday, August 30, 2012

Identity Crisis

I might offend people here. I just don't think that our children's failures or successes are measured by how great of a parent we are. I see the social media posts about the Pre-Kindergarten gifted/genius programs that are apparently being offered (okay...I'm being a little bit facetious...but not entirely...) and just how proud the parents are of their kids. Proud or Responsible, I always wonder?  The same goes for my friends who have a child with special needs. There are some things flung at them that are downright intolerable. Things that other parents say that insinuate that their child is the way they are, because of something the parents have done. Unacceptable.

I had a very eye opening moment a little over two years ago, when I got Elijah's prenatal diagnosis of Down syndrome. I thought the world as I knew it was over. I was so down and so depressed and woke up everyday for awhile thinking that it was a bad dream that I would surely wake up from.  One day, the air cleared a little and I had a very simple thought: I. do. not. have. Down. syndrome. My baby will have it, but I personally, do not. It was like a cloud lifted and I realized that maybe Elijah's life will be harder. Maybe it won't be. But, either way- it's HIS life. Sure, I will have to do what I can to help him maximize his potential, as I will with Christian. But his life is his life and my life is my life.

His life is his life and My life is my life.

I don't want or need the "credit" when something goes remarkably well. It's not about me. I also don't take the low points as some direct reflection of bad parenting on my part. I think I do okay at the parenting thing. I'm consistent, I create schedule in our life, I am quick to laugh and joke, I show affection often and with fervor, I encourage kindness and consideration. But, I am so far from perfect. I have yelled, I have lost patience, I have said things that I wish I would have known better what to say. The good news is that I'm not absent- I don't leave my kids so I can get drunk in a bar or have my kids trying to raise each other because I'm unavailable. That stuff happens.

I have a good friend who had a pretty messed up childhood. And I mean, "pretty" is not the right word at all. She still has emotional scars and yet she is one of the most loving and supportive people I know. She runs marathons and pushes herself to be better, to do more. She worries about her future and whether or not she could be a good wife or a good mother...and if that is even possible. I know it IS possible for her and that she can have anything she sets her mind to.  This is not because of her parents. This is in spite of her parents.

So, I take the wins and the losses with a grain of salt. I will help my children become the most successful adults they can be, and that is going to look different for each of them. But, if Christian becomes a world renowned brain surgeon, it won't be my credit. It will be his credit. I can be a great parent and know that I am not the one who gets the credit.  Last week, I relived the story of Day Four in Kindergarten with Elijah's Child Development Services professional. I told her that after we got home from school, I gave Christian some quiet time to think about making better choices and while he was doing that, I made a behavior chart. Her face lit up, "You made a CHART??!!"  She said that I had just moved myself to the top 2% of all parents, and that in her line of work she has been encouraging charts for years. However, almost no one actually makes or does the chart.  We laughed about it, but then I realized, she's right. Not that I'm the greatest parent. But, that that is about all you can do: You can make a chart. Pretty much that's it. You make the chart, you encourage the chart, you stay consistent with your discipline. At the end of the day, though, your kid is still going to be your kid- perhaps the people pleasing type (like I was as a kid) who wants to do it all right, perhaps the perfectionist type, who never thinks they have it right, perhaps the highly creative type, who doesn't necessarily fit into the same box as everyone else. Who they are, is who they have always been. When  I look back at my kids- even as newborns, they were then, who they are now. Their essence was already there.

I find this liberating.

This week hasn't been the greatest week, but it wasn't bad. I celebrated a birthday and have had enough friends & family who have insisted on celebrating in some way, that it's becoming more like a birthday week. However, we also had to say goodbye to all of our in-home therapists that have been helping Elijah since he was 5 months old. There were tears for that this week, even though I know that we will be in touch with these amazing women. They have changed our lives for the better and we love them. Kindergarten has been rocky again this week. Last week was amazing- 2 trips for good behavior to the "treasure box", but today, the teacher sought me out again. She said, "I just want to let you know that I wrote a note to you today in Christian's agenda, because he had some trouble making good choices today. I'm letting you know, because he has hidden his agenda under his chair, because I don't think he wants you to see it."  Hmmm.
So, I see Christian, "Hey Buddy, let's go! Where's your backpack?"
He brings over empty backpack.
"Where's your lunchbox and agenda?"
"I don't know..."
"Well, let's look for it." (The teacher joins us in the classroom to "look".)
Christian pretends to look in all of the places it's not.
The teacher says, "Hey Christian, Is there anything under your chair?"
Christian picks up the lunchbox under the chair, "Here it is!"
I say, "Great! Now, where's your agenda?"
He continues to look in more places it's not.
The charade finally ends as the teacher points out that we can see the agenda sticking out from under the chair.
Christian hands it over to me with a sheepish look.
Apparently, his not good choices had something to do with "jumping on friends", "punching lunchboxes" and "tossing some toys when asked not to". Sigh. He sure is pushing the boundaries to see what he can get away with. And I'm left with my chart- which he loves, but even still it does not suddenly produce the world's most well-behaved child. So, we will try again tomorrow. There are continued rewards if he makes good choices and we had a long talk about asking himself, "Is this a good choice??" And there you have it, people. Nothin' left to do but ride the ride.

The upside of the ride this week was that we got a new backpack for Elijah so he can start his new program next week. They requested that he bring a backpack with a change of clothes, a snack, and some diapers. I looked for the smallest backpack I could find (in a pinch- no time for online searches and ordering) and purchased it. He won't actually wear the backpack I don't think and it will likely be bigger than he is, but I will be doing my best to get some pictures anyway. First day of "school" pictures-out on the front lawn, just like his big brother has, each year he has started some type of schooling. I'm looking forward to some pictures that will make me smile.

Then...there was this:


It was an amazing moment to watch my littlest one accomplish something he has wanted so badly. He has been trying to figure out that slide for a little while now and has been the happiest, most motivated toddler around in trying to figure it out. Mister Man can't even walk yet, but he can slide down a slide!! Oh yeah!

I don't want to have my identity be formed by what my kids do. That's their "thing". When I release myself from the idea that I am my kids and my kids are me, I have a simple identity to define. Me. Then, I get to watch them learn how to be Them. Hopefully, along the way, they will feel safe to figure that out, because both Charles and I are present, and loving, and our life isn't full of confusing drama. That's about all we can do.

That, and enforce a chart.

Wednesday, August 22, 2012

Change

My heart is beating a million miles a minute and I'm feeling nervous, but excited, but anxious, but thrilled... And yes, I'm drinking some amazing Sangria that my hubby just whipped up, but it's not the Sangria. I may be changing things up for Elijah, and for our family- Big Time.

It all started with a conversation I had with one of the parents at my son, Christian's school. The Mom told me about a great, center-based program that her son (who also has Down syndrome) did when he was two. It's a program called Jump Start that combines all of the therapies- Physical, Occupational, Speech and Child Development into an intensive environment where the child gets regular, daily stimulation in these areas.  The program is a drop off program and runs from 9-12 daily, Monday thru Friday.  The parent involvement is still a part of it, but it's one hour a week and then a three hour observation once a month. This is 5 times less than I am personally, physically doing with him right now.  Currently, Elijah has Physical therapy 2 times a week, Occupational Therapy 2 times a week, Speech therapy once a week and Child Development Services (which is kind of like "Play Therapy") once a week.  All but the Speech therapy takes place in our home.  Our therapists have become like family. Truly, I see them more than most of my family. I raised the question about this center based therapy with two of them last week. I wanted to get their opinions, see if there was a down side, and generally pick their brains. Choosing a program like the one we are looking at, means we'll be trading in our one on one therapies at home for this center based therapy. That is both exciting and bittersweet. Today, surprisingly, I got the call from my Regional Center Coordinator (who has coordinated all of Elijah's therapies services since he was 4 months old) with abrupt news that Elijah had qualified for the Jump Start Center Based Program and would begin on Sept 1st. The RC Coordinator told me he'd start letting our therapists know to do their discharge papers.

Oh.

Oh, okay. I knew that looking into this possibility would mean that the therapists we currently have would no longer be a part of Elijah's developmental progress. But, I love them. Elijah loves them. And frankly, despite their thinly veiled attempts at maintaining a professional arms length, I think they love us too.  I had a chance to talk to our Physical therapist and our Occupational therapist about the possibility of changing things up, but I hadn't had a chance to talk to our Child Development Services person yet. I'm afraid that she got the call from the Regional Center before even hearing it from me and unfortunately because of my schedule today, I couldn't do anything about it. The Child Development Services (CDS) started first, before anything else. She was there for us, cheering Elijah on before any other services came to the table. I don't know how I'm going to be able to express to these people how much they have touched our lives and how we don't want them gone from our lives. I asked each of our therapists when they first started, how difficult it was when they finished working with a child. Was it  heart wrenching to have seen them one and two times a week and then just be done? They each said that it depended on the child, but that often the joy of seeing the child move onto to bigger things helped it to not feel sad.

Tomorrow, I tour the new facility with Elijah. I am feeling butterflies in my stomach about it all. The thought of having just a couple of hours a day to focus on myself and my work is heady, but I haven't been without him on any consistent basis yet. I will miss him a lot. I quickly remind myself of all of the help he'll be receiving, the social skills he'll get to hone, because there are other children there and how much time we still will have together each day.  Fingers crossed that the path will be clear: that either this program looks like the best possible thing for him, or it doesn't and then I try to stop the wheels from turning so I don't lose our current therapists. See? Exciting. Nerve wrecking. Thrilling. Anxious....CHANGE. It always is.

I'm jumping in with both feet to Change these days. I'm adjusting to life with a Kindergartener- who, thankfully, seems to be quickly understanding the rules and boundaries at school and has been getting great reviews from his teacher ever since we had the infamous peeing/Ferris Bueller attempts last week... I even found myself volunteering to chair the School Carnival Committee for the end of the year carnival.  I am in it- waist deep. I don't know how it's all going to turn out, but I've been here before and growing more trusting of this unknown, uncomfortable place...called Change.

I need a smile in my heart so I can remember who all of the change is for, so I uploaded a few of my Instagram photos from the week...my boys...

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Saturday, August 18, 2012

Day FOUR??!!

The Kindergarten Honeymoon is over. Already. Bubble burst. Glow gone. Now we're in it.  I'll digress a few days....

Day one went spectacularly. When I picked Christian up, he said, "That was a really fun day, Mom!"  I was glowing from ear to ear.

Day two: Also spectacular. When I picked him up, the very first thing he said was, "I got a key today, Mom!!" A key is a reward for good behavior. Three keys equals a trip to the treasure box.  I was a proud Momma. Then, he asked if he could have a playdate with his new friend from school.  I thought, Why not? He's bonding with someone already, let's foster that. And we left with promises of asking about a playdate the next day.

Day three: Amazingness continues with the acquisition of another key. Christian got to ask the Mom of his new friend if he could come over for a playdate and she said yes. We arranged a playdate for after school of day four.


Day four: I clean house after dropping Christian off at school. I make snacks. I get excited about a new friend for Christian and a fun playdate.  The school day wraps up and I head to the school to pick Christian up.  As I walk in, a smile playing across my lips, Christian's Kindergarten teacher briskly slides in front of me. I'm not kidding here- it was like the side sliding move in the Electric Slide line dance. It was startling. Her side kick teacher/ henchwoman slides in next to her.

She begins: Hi. I need to talk to you, before you get Christian.
Me: Okay...
She: We had a little incident today. Well...two incidents, really.
Me: Oh...o...kay...
She: Well, one of the other teachers found Christian peeing on a bush during recess.
Me: (The sound of my jaw hitting the floor.)
She: The teacher asked him if he knew where the bathroom was. (Hope bubbled up: Oooh,ooh..good question!! It's a new school-maybe he didn't know where the bathroom was.)
He said yes.
Me: Oh. Ummmm...I don't really know what to say.  He doesn't usually pee on bushes.
She: (She leans in conspiratorially) Well, to be honest we've seen this before, it's usually not a big deal and I don't think it will happen again.
Me: (Relaxing, just a little bit)
She: Unfortunately there was another issue. I guess Christian and Dash were excited about having a playdate today.
Me: (Tensing, just a little)
She: Well, the boys told us that they decided to start their playdate early and when the bell rang at recess, they decided to hide instead of come back to class.  We were pretty freaked out. Nothing like this has ever happened and we were alarmed to find two Kindergarten boys missing. We found them and when we brought them back to class, we told them that unfortunately they would probably not be able to have their playdate today and the choice they made was not a very good choice. They don't believe that their playdate may be canceled though. We hope that you can help us to reinforce that this is not acceptable behavior and that it will have consequences.
Me: Oh- There. will. be. no. playdate. (If I weren't so white, I would have waggled my neck on this one.)

I catch a glimpse of the other Mom, who is looking at me with huge eyes, like Can you believe this?? I look at her: Right? No playdate?  She says, Right. No playdate!!

The teachers seemed to visibly sigh from relief. I get it- I think half of the conversation is really about how we'll respond as parents. Are we going to follow through and discipline our kids? Or, are we the kinds of parents that are going to let things slide, thereby producing the year long trouble makers in the class?

I'll sum up the rest. There was crying when Christian realized the playdate really wasn't going to happen. There was "quiet time" to think about his choices when we got home. And there was a chart made as a way for him to begin earning back his playdate.

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I got crafty with the chart. I channeled my inner anger into the damn best chart I could make, as if a chart would completely irradicate Day NUMBER FOUR of Kindergarten.

The good news is Christian seems excited about the chart and what he can earn. The bad news is I think most teachers at the school now know of my kid as the disappearing-from-class-peeing-on-a-bush kid. Great. Thanks Christian. I sincerely appreciate it. Day FOUR???? Seriously???

The next day, I walked into the school office with a check. I figured now was a better time than most to make a "donation".

Monday, August 13, 2012

Kindergarten

My firstborn started Kindergarten today. I sit here trying not to cry as I type out those words. I'm getting choked up not only because of how the time flies, but because I have a profound feeling of pride. You have to be a brave little guy to walk into Kindergarten, head held high, ready to leave Mom, Dad, and baby Brother behind for the day. And that is just what he did.

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We took our first day of school pictures out in the front yard, as we have since he started preschool.  The trusted best friend, "Leo", was there for moral support, he was already complaining about how heavy his backpack is and despite my best efforts, he's starting the year with a kind of botched up haircut. Oh well. It's a rite of passage, right?

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Charles threw caution to the wind and joined us, even though it meant getting to work late. Christian was so excited to show him around his new school!

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I had a tough time getting to sleep last night. I made a list so I wouldn't forget anything and checked my alarm clock about 22 times to make sure it was going to go off in the morning. Everything went smoothly at first- lunch box was made, potluck breakfast item was prepared, Christian got himself dressed without complaint, Elijah drank his milk (second day in a row with no morning bottle!! He's drinking it from his sippy cup!), both boys ate their breakfasts. I even had time to do more with my hair than the standard ponytail. It was only as we were walking out the door, that all hell broke loose. Elijah had a major diaper blowout. Apparently we are out of wipes, or the babysitter has moved them to where I cannot find any. Charles walked past a glass beverage dispenser and somehow knocked it off the table, where it broke into a thousand little pieces. Sigh. Real life.

We made it to school on time, regardless, parked a block away and walked in. The Kindergarten classes have a potluck breakfast the first day of school to help ease the transition.  It was great! We had a chance to meet the other kids in Christian class, talk to some of the other families, and get some yummy breakfast treats before starting the day.  Two kids that Christian went to preschool with are in his class, and we are all so grateful for it.  It's nice to have a little bit of comfort in knowing a couple of people.  After breakfast, the kids played in the play yard, while the parents looked on.  Eventually, Christian's teacher called for all of the kids to line up in rows to get walked to their classrooms.  Christian was the last in line and the tallest in his class.  We said goodbye and I watched him walk in to the classroom. He didn't even look back.  I managed to hold it together until I couldn't see him anymore and then...waterworks. It was so nice to have my hubby there to cry on his shoulder...even though I'm sure he thinks I'm crazy.

Kindergarten has started and all I can think is, Here we go.  The start of the formal school years.  I'm proud and stunned and excited and nervous all at the same time. Some day, I want Christian to know how I felt about this day. I can't really tell him about it all now, and even if I did I don't think he could fully grasp it. This is what I would want him to know:

Dear Christian,
     Today you started Kindergarten and I can't hold back my feelings of pride. You were so excited and so confident today. There is not much more in this world that I would want for you, except to live your life excitedly, confidently and kindly. I chose this school for you, because I know you will be getting a good education, academically, but more importantly, I know you will learn to be considerate, compassionate and kind because you will be in classes filled with children of all abilities. There are a lot of things I want you to be able to have when you become an adult. Of course I want you to be smart and educated because I know that will create a lot of opportunities for you. But, more than that, I want you to be comfortable in your skin and I want you to be a kind person who accepts and sees people for who they are. I feel so lucky to be your Mom, Sweetie. I thank God every day for you, and I just feel so incredibly blessed to be a part of your journey in life. I love you....to the moon and back and to the moon and back again. I can't wait to pick you up and I hope you can tell me all about your first day in Kindergarten.
With all my love,
Mom

Saturday, August 4, 2012

Thank God It's "Friday"

We are IN!!!!!!!!!!!!!!!!!! To the "Friday School", that is. I nicknamed our #1 elementary school of choice the "Friday School" because after a whirlwind tour of 4 other elementary schools, the school we toured last- on a Friday- became our #1 pick by a landslide.  I know I got a little crazy and a little anxious about the whole process. I'm sure I have friends with older kids who thought I was too wrapped up in choosing a Kindergarten. But, here's the thing:
1) The neighborhood we live in has terrible, TERRIBLE home schools. Under-enrolled, severely budget challenged, minimal to no parental support- in time or money, and test scores we won't even discuss.
2) The Friday school is a K-8 program. All of the other schools we toured were K-5, which meant that I would have to go through this process all over again unless we moved to a better neighborhood. (When we bought our house, we assumed that in at least 5-8 year's time we would have upgraded to a better neighborhood with better schools. Yet, here we still are. I know a lot of people around the country are in similar positions. It is mind-boggling how much money we have to make to stay in our 1300 sq foot house in the Los Angeles area.
3) The Friday school has a theme of Inclusion. The school's philosophy is that ALL children, regardless of learning style and ability, work together in an inclusive environment. Children of all different abilities, from the gifted to those with special needs, learn in the same classroom. And I love the way they actually accomplish this. My oldest son, Christian, will grow up where inclusion is the norm, not the exception, and Elijah will grow up in an environment I don't have to fight every step of the way to have him included in regular classrooms.

We have been on the wait list since May. We started as #14, moved to #9 by June and then to #1 in July. I called on Tuesday just to get a feel for if the school thought a spot might open up before school began. The secretary said it was possible but she couldn't say for sure. She said they would be working on the wait list in the afternoon. 50 minutes later I received a congratulatory email, letting us know that Christian had received a spot. (*I know I make this sound simple, but the objects are larger than they appear. I have not gone into detail about the many phone calls that I made to the school in between being #14 and the last phone call. Let's just say, I didn't need to give them my son's last name when I called to inquire this last time around.)

I screamed. I scared my children. Then I bounced around and grabbed the phone to formally ACCEPT. It is an answered prayer.

On Tuesday, the day after we got word of Christian's acceptance, we brought the enrollment forms into the office. I asked if I could walk Christian around the campus and the secretary told me that she would have someone give us a formal tour. Our formal tour included  a parent volunteer and an almost 3rd grader who happened to come into the school office with her Mom. The 3rd grader- Giselle- was happy to show Christian around and talked about which class she had been in, in Kindergarten and who her teacher was.

In one classroom we entered, there was a therapy ball of sorts- kind of like a Pilates or therapy ball, except it's shaped like a peanut.  Christian sat on it and asked what it was.  Giselle said, "Oh, that was James'.  He has special needs and sometimes he would use it to bounce on or lay on."  The parent volunteer said, "That's right, because some kids learn a little differently, right?"  Giselle replied calmly, "Uh huh. James loves to surf and he LOVES the water. He doesn't talk, but he has a picture board, and sometimes if he wants to play with you, he'll bring you a picture of what he wants to play with and gives it to the person he wants to play with. Then, sometimes the teachers will let you take a break from your schoolwork to play with him."  I wanted to cry. On the spot.  I was so touched by how she was just relaying the story about a classmate- a friend who is a little different. Her tone was almost admiring. It wasn't dismissive. It wasn't pitiful. She knew this kid James. And he was just....James. James, who learns a little different, communicates a little differently and loves to surf.

I adore this school for Christian. I truly think it will be a good fit. The bigger picture is that this school is priceless for Elijah. No fighting the school district on whether or not he'll be fully included in typically developing classrooms. No wondering if he'll have a full enough experience with his typical peers, or they with him. When Elijah gets to Elementary school age, he will work alongside his typically developing peers and luckily these peers will get to know HIM. He has a shot at not being seen as different or weird or stupid. These are the things that kids (like I was) think when they haven't been exposed to children of all abilities. It's uncomfortable and it breeds ignorance.

This week has been absolutely stellar! I was able to take a deep breath from all of the school anxiety and fully enjoy what this week held. It held FUN.

After our amazing school tour and a quick dip at the local pool to take the edge off the heat, I dropped Elijah at my parents' house so that Christian and I could have an official Mother-Son date.  I had tickets to the El Capitan movie theatre in Hollywood to see "Brave" and decided we should travel in style.  We drove to the Universal City Metro station and hopped on the subway for one exit,  and then walked across the street to see the movie.  The El Capitan isn't just any movie theatre. It's a historic movie theatre in Hollywood that mixes live entertainment with movie magic to create an experience unlike any other. The coolest thing about it? When I was dancing professionally, I worked there many times. Luckily, I still have friends dancing in the shows there and we were fortunate enough to see them perform before our movie.  I was all smiles. Christian was literally bouncing up and down in his seat from the live entertainment excitement. The train ride was a thrill, Christian loved the movie and it was all in all, the best Mother-Son date we've had to...well, date.

Walking up to the station...
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I got Christian home late, tucked into bed, and was thankful that my parents had agreed to take Elijah overnight so that I wouldn't have to drive back late to get him.  Come morning, I was aching to see my baby boy, though.

When I went to pick up Elijah, I got the usual report: He ate a good dinner, slept well but woke up early, and had fun. Oh yeah, and he was walking by himself with the push toy. .................Come again?........ My Mom was surprised when I said, "What??!! He's never done that before!", so we immediately pulled out the push toy, stood him in front of it, and...




He did that over and over and even stood up (holding the toy) without assistance from us.  Our house has a lot of wood floors, so the push toy is faster and harder to control on the wood.  I am impressed that he has even started mastering the push toy at our house in the areas where we have throw rugs, or with some assistance from me to keep the toy from shooting out from underneath him. I also love that when the toy starts getting too close to a wall or a piece of furniture, he stops, changes the direction of the toy and then starts walking again. My little smarty pants.

The glow of knowing where my kids will go to school put this whole week on a great note. Our days were colored with an extra dose of happiness and the schedule of swim lessons, playdates, pool hangs, subway and movie adventures and even a girls' night out peppered my work week in the best possible way. We would have made it work if the "Friday school" hadn't worked out, but now I can take a breath knowing that it did.

Thank God It's "Friday"!! :) 
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