step by step

Belac 1/2012

Zipped up Belac's jacket while reviewing his route to school. Walk to the corner. Stop! Say hi and ask, is it okay to cross? When Ron says yes, then you can go.

Wait, my husband stopped as he was rushing off to work, he's going by himself?

Lately, I've been bringing Belac to the corner and letting him go the rest of the way. You can do it by yourself today, right, Belac?

Yes I can! he replied with a thumbs up and eyes down.

We have been traveling this route to school for 1-1/2 years since moving to this house. After the amazing crossing guard arrived at our corner, a couple of months ago, I decided to stop holding Belac's hand. We are 2 houses away from school. Sounds easy enough, right? But the trek involves walking on the sidewalk and looking, while crossing the exit of my neighbor's driveway. Walking, not running, to the corner. Asking and waiting for permission to cross. Crossing, while still looking. Making an immediate left. Climbing 25 stairs and walking half a block, the length of the school. Turning right, into the entrance. Climbing 10 more stairs and walking still 50 more feet before entering the front door.

We have walked this path hand-in-hand, with me bringing Belac all the way inside and passing him off to an adult. Then with me saying good bye just outside the school's front door. We have then traveled this path side-by-side, then with me several paces behind him. Then with me stopping at the foot of the 10 steps, then mid-block, then after crossing, and then before crossing.... And now, yes, saying good bye at our front door. Everyday I have coached him. I believed he could one day walk himself to school and today was going to be an ideal day to try. The sun was shining, the traffic was sparse, and I could see our reliable crossing guard from afar, out and waiting. I also had a sick kid upstairs I didn't want to leave.

I kissed Belac good bye and watched him run down the drive. I went upstairs to look out his bedroom window. I saw Belac walk along in varying tempos, even stopping at one point. I knew without seeing him that my husband was down there, too, watching from not far away. I saw Belac stop at the corner, the guard make a motion, and his little head bobbing up and down as he ran across. I watched Belac slowly climb some stairs until he was out of view.

He walked by himself to school today! A significant step and one of two reasons we moved here in the first place. Kids can walk around and be more independent in this walking town. Getting yourself places is a life skill he practices here. Hallelujah, Belac! You did it.

heartsdale

Didn't have to teach this morning, so confined myself in the basement to deal with messes piling up. Also opened up a few non-descript boxes that we've been lugging around for I don't know how long. Found plenty of pencils, random papers and my kids' old school photos. They were so cute and happy looking! And then pulled out a folder with a picture of our old house on the cover. Inside was the detailed listing and a glossy brochure with vivid photos of every room. I think it must be like finding old love letters from someone who has died.

It's amazing how those photos tugged at me and made me upset. We still own some of those linens and furniture pictured. The rooms were so bright and sunny. And the yard. Well, I glanced quickly and then shut the folder. Is it wrong that it upsets me to look at those photos?

Of course I am sentimentalizing. We couldn't stay there and we're better off here. The kids are going to a very good public school in Sunny Patch and simply couldn't at the other house. This house is bigger and accommodates more people. The lay out is better for all of my music lessons. But I miss those flowers and flowering trees - even though I could plant some here. I miss how bright the house was on the inside and how simply and straightforwardly it was laid out. I miss how cozy and sweet the house felt. And I miss being outside in the backyard, watching the kids climb the trees, jump in puddles, and swing, every single day come rain or shine. They were so happy. Even though autism was already there, I miss that place, our oasis. Back then, we had all the time in the world to figure things out. I could hold both kids in my lap and hugs and kisses still seemed to cure most everything.

actions matter

I agree. Words matter. But let's be crystal clear. Actions matter much, much more.

No one tried to identify or locate that 1o year-old boy or find out what really happened. Not even the adult who saw the child being raped. That 1o year old could have easily been my kid. That 1o year old could have been your kid. No one that should have or could have followed up during the 1o years that passed did so until those kids who had been violated grew up and found their own voices. How people protected Sandusky and their team makes me sick to my stomach. How they now feign ignorance! At least Paterno admitted in retrospect that he should have done more.

I don't care how low on the totem pole you are. I don't care how bad you are with words. We all have the ability, capacity, and duty to help each other. It's what makes us human beings. I've said it here before and it's something that is so important to me as I watch my boys learn to navigate the real world. I want my boys standing up for what is right and wrong. That they think for themselves and are unafraid, both in advocating for themselves and their positions, and in helping others. I'm sorry, but the meek do not inherit the earth. Actions matter.

blogging

Jake is definitely going through growing pains or something. Read this article about the therapeutic benefits of blogging. It is certainly consistent with my own experience and I never thought about it for younger writers. Jake writes very well. Maybe it's something for him.

play date

Dot's son is here. We have gotten into the routine of bringing him home after Hebrew School and returning him 2 hours later when his sister is done with her class. It's a short and sweet play date. Perfect, actually. They build marble runs and tinker around. It's amazing for Belac, who engages with him over shared interests. And I think it's good for this kid, whose parents recently divorced and whose sister is having considerable difficulties. He likes to be here, away from the stresses at home, and he understands and appreciates Belac. He is truly a gift.

review

The kids were immediately off and running. But for at least a very long 1o seconds, as I sat with the Lily's parents after they first arrived, I literally had nothing to say. Me! I'm not sure that has ever happened before. It was my husband that came to the rescue when he came back and poured some wine.... 45 minutes later, the chicken, a reliable crowd pleaser in the past, came out of the oven in an unrecognizable state. It was not its crunchy-on-the-outside self and seemed more - to my horror - slimy. And then when I took a bite of broccoli, it was way too salty. None of the food was outright bad, but it just wasn't great.... and these were dishes I could make in my sleep and never had any problems with before.

Everyone was nice. Everyone smiled. For 4 hours and until late we talked and talked, and when they got ready to leave, Lily did not want to go. Did I feel any of the much anticipated relief after this get together? Actually, I did not know what to think. I couldn't figure out if it was really fun even though we all said it was. Thinking it over, I really felt no better than before.

At one point in the evening, we talked about beautiful places on the Hudson river. Lily's mom turned to her husband and said 'we should go to [this place on the Hudson where there are outdoor plays and families bring picnic dinners]' and then proceeded to explain to us what it was all about. Did she mean 'they' should go, or 'we' as in our families? 

Another time, Lily's mom mentioned that they'd have us over for a barbeque. It was nice and she sounded sincere, but for some reason, I just wasn't sure. I don't know what it is about this relationship but there is a layer of something I really can't figure out at all. 

My husband pointed out later. Gimky, I don't blame them for keeping their distance and I'd do the same in their position. This friendship between Lily and Belac, how long is it really going to last? At one point things will probably change. She might come to find Belac a burden. Look how attached he is to her, it's already too much and smothering.... They're right to keep a distance given the circumstances. 

All things considered, the evening went as well as it could.

Food: 7/1o
Kids behavior: 9/1o
Conversation: 8/1o
Ambiance: 8/1o
Effort: 1o/1o

dinner date

Lily's family is coming for dinner today. We like to have people over. I like to cook. But this invitation makes me nervous because it's different from all the others.

Next week end, Belac is having a birthday sleepover. A mom called to tell me this would be her son's first ever sleepover. She told me he had been invited to others before but she never felt comfortable allowing him. She also brought up her son's past night terrors. Although he hadn't had one in about a year, she wanted and needed me to know. I was flattered that she felt I could deal with whatever would happen. More importantly, as I hung up, I realized how important this straight-forward relationship between us parents is when it comes to the 'success' of our kids' experiences.

The thing about Lily and Belac, is that they became friends by themselves. He chose her and she reciprocated. I never had a chance to have a conversation with the mom about him, like I've had with every other mom. I never told Lily's mom that he had an aide, or why he has an aide or services. I don't know what the school psychologist told them about Lily's lunches with Belac, or what they know of his behavior they are trying to correct in using those lunches as an incentive. I really don't know what they know or assume. Unlike any other relationship Belac has had, this friendship happened naturally and on it's own. And now they call themselves 'best' friends. With no preemptive apology or notice or explanation from me about my son's challenges, I didn't give the parents a chance to pull their daughter back in any informed way if they had a problem with it. And now, if it matters that my son is on the spectrum and doesn't exactly find school easy and even frustrating at times, it's kind of too late. Or it will just be excruciatingly painful when the other shoe finally drops....

So I am trying to just go with it. But knowing how important Lily is to Belac, I realize that I need things to be less formal between the families. I need to know that they will speak up if they are ever uncomfortable with anything. And that's why I invited them here tonight and it's why I care they have a nice time.

I drove Kati to JFK, yesterday. She flew out to help her husband pack up his apartment and drive back cross country. She pointed out to me. Gimky, Lily's family would not be coming to dinner if they already didn't like all of you. They would not have allowed her to ever spend the night or for you to drive their daughter places. Has it ever occurred to you that they don't care he has an Aide or that he's different? That they could just appreciate and love him anyway? And what if it turns out that they don't like you or him or realize 'something'? So you know and you finally know and that would be a relief, too, just to know.... You are a great family, what is there not to love?  Don't worry, she told me with a big hug and kisses, just relax and try to have a good time!

gold

Saw Belac's class play this morning. Arrived to see that Kati had saved my husband and me seats, and then saw that my new friend, Dot, had arrived with her daughter and pulled them in next to me. And so there I was, in between two of the kindest people, who know all there is to know about my son, watching all of our kids in the play.

Before the curtain opened, Dot and I had a few minutes to chat. She explained that they had had a very difficult morning and were lucky to have even made it. Her daughter, who is mentally-handicapped, could not get things together and her neuro-typical son, Belac's classmate, lost it and they had all arrived late and were still unraveled. Our conversation meandered through several topics. I found myself recalling to her how just 2 years ago, I had sobbed through Belac's entire play. I was speechless and shocked to see him on stage without an aide and looking like everyone else for 3o minutes. Gimky, she pointed out simply before kissing me goodbye, this beautiful, put-together woman who I never knew had any stresses in her life until I met her daughter only recently. You and me. We don't take anything for granted.

It was such an easy, matter-of-fact but substantial interaction over what are awkward subjects for most people. There was no pity, pressure, competition, BS, over-interest, unsolicited advice, schadenfreude, or any of those feelings that make me squirm with most people.... Just the understanding that it's hard sometimes and life goes on and you do the best you can. And this is what I love about the few friends I am so lucky to have. They're gold.

stepping back

From just the right angle from the kitchen window, I can see the kids walk to school and the crossing guard help them across. This morning, I saw Jake with his arm draped around Belac, which was both unusual and sweet. This morning, we had talked about it again. Cross together. Do not run as you near the corner. Do not cross until you say "Hi, Ron! Can I cross?" and he says "Yes!" Are you clear on that?

Jake has been walking himself to and from the middle school all year and loves it. We're lucky his school is just 5 blocks across town and that there are 3 crossing guards to help on his way. But I also recognize that by giving him more responsibility, now and again, it builds his confidence. At least once a week, when their schedules coincide, he can drop Belac off on the way. I also know that it's sometimes better when Belac doesn't have his Mummy to rely on, and in fact when he's just with Jake, he feels like such a big kid.

This Spring, I have both boys enrolled in a movie-making class in town. The only day I could get them in is on Monday, when I have a long day of teaching from home. I'm now looking for someone to bring them after school. But it's just 6 blocks away in a walking town with sidewalks. The trek is no longer than what the kids did everyday when we lived at the rental... if I gave Jake my cell phone so we could check in with each other, couldn't they get there themselves? And I'll pick them up when class is over?

Of course! the boys told me, we can do it! Mom, Jake reassured me with confidence, you don't need to find us a sitter. Yes! Belac agreed.

Not yet, was my husband's reaction when I later suggested this idea. I felt a sort of relief and knew he was right.

Yesterday, Kati and I watched our kids chase each other around the skating rink. Oh my God! she pointed at my boys, they are so much better! I looked at them with her eyes and could see that they had improved. Just a few weeks ago, they both kept gravitating to the sides and my husband and I were forced to drag them around. Now all of our kids were in the middle of the rink with Jake stealing Belac's hat and her girls excitedly chasing him and stealing the hat from each other. Belac apparently taunted Izzy, and all went into hysterics upon hearing him call "Girlfriend! Girlfriend! Bring my hat back!" They were a big, unwieldy, sloppy, laughing mess, with each of them intermittently falling all over the ice. It was so nice to be able to step back and just take it in, and I only felt like I could because the kids were so happy and together. Not just for me, but for my boys, too. It's the sweetest thing that Kati and her girls are all sticking around.

plans

Camp registration for the summer has begun and we've decided that the boys will do something new. We are enrolling Jake to sleep away camp for a couple of weeks. It's a place where the kids are in the very rustic outdoors. He'll hike, swim and kayak in a lake, everyday, and do the kind of outdoor activities that he loves. We think it will be great for him to be immersed in nature and part of a warm, crunchy-granola Jewishy community.

We also plan to send Belac to the local art camp, where he'll draw and paint and make movies. It is not a special needs camp, but I have spoken to the director about his challenges and they are willing to work with him. In fact, much to my surprise, they encourage us to send him. I am excited for Belac. Working on his challenges consumes so much of our energy and time. It's just how it works at school and somehow bleeds into everything else. More and more, though, I believe we need to approach his challenges from the angle of his strengths. I am predicting his behavior, level of engagement and independence will drastically improve when he can spend most of the day doing what he likes best. The summer will be a great opportunity to test my theory.

And today I sign off with this video from a 6o minutes segment. This kid is one in 1o million. The lesson I learn is that you lead with your strengths. Only until 18 years old is a child expected to be a generalist. It's the way we have set up our system. But I have come to believe that true success is all about finding one's passion and leading with those strengths. It's never too early - or late, in my case! - to be true to yourself. I hope I can help my boys find their way.

PS - The discussion of memory at 6o minutes makes me think of both my husband and Belac. Both have an incredible memory of numbers. They both remember everyone's birthdate and year, even people they've met only briefly. To this day, they both laugh at saying words backwards and when he was younger, Belac reveled in reciting the ABCs backwards. Belac remembers the release dates of all the Pixar movies, their lengths down to the second and ratings on Rotten Tomatos. In my husband's case, he knows the elevations of all the mountains, populations of world cities, dates of past events, and it just happens without effort. Numbers just stick to his brain and he can organize them differently according to an excel pivot table in his head. It's a great party trick. That and my remembering where I last saw anything and my absolute pitch. In addition to your basic musical notes, I can tell you the pitch of any squeak, alarm, bark, or scrape of a chair and match it on the piano to prove it.... I have to wonder if - in Belac's case - these unusual but harmless memory abilities between my husband and me indicate too much of one particular tendency that combined, created this even bigger, hyper-visual-aural m.o. that presents itself as autism. I love that this segment shows the positive of autistic traits. I also recognize that many will be unconvinced that the child featured was ever - and is - autistic. I don't know what to think myself, but there's still what to be learned from his story.

boyz

Jake was hit with an ice ball today on the playground. I saw that he was stunned and blinked away tears. The ball had came out of nowhere and smacked him from close behind and the thrower ran far away. And what did I do? I marched the one hundred paces right to the boy and suggested he apologize. It's exactly what I would have done if Jake had been the thrower. The kid came unwillingly but obliged. What a good Mama I was, right? The world was all better! But then when this same kid passed with his friends, he deliberately said in earshot, that kid can't even deal with a snowball! And even had to have his mom deal with me!!!

Ouch.

As we walked home, Jake tried hard to suppress tears as they flowed down his face. The math tutor was waiting at our front door. Jake would not face him and stayed in the backyard.

Oy.

I let the math tutor in. Then got Jake into the bathroom to splash his face with water. But he just couldn't get himself together and get over what had just happened. I had the math tutor leave and joined Jake on the bathroom floor.

I told my son that I was proud of him for not stooping to their level. I learned from my son, though, that he feels like a wimp.... By the time I spoke to my husband, later, I had already realized that I need to sometimes let my son fight his own battles. Had I not been on the playground, he would have figured something out, stood up for himself, or gotten over it more quickly. Instead, my taking over was ultimately not helpful. But it took my husband for me to understand that my son was probably humiliated. For not duking it out himself, to be seen with eyes burning. I just didn't know. And you know what else? Maybe it's not a bad thing for my kid to defend himself now and again. My aggressively telling him to not fight back for fear of making something "worse" or Jake getting in trouble is maybe a disservice. Maybe it instills fear when really what he needs to feel is more indignation and that he's someone worth standing up for. And here I am in my girly ways getting all analytical and confused about this.

I heard Jake call my hubby tonight, asking when he'd be home. Besides the snowball thing, did you have a good day? my husband asked. Yes, Jake replied. And about that snowball incident, looking back, would you have done anything differently? Could you have done anything better? Jake thought about it a little. No. Okay, then, my husband explained simply, then you probably did the right thing.

My husband is such an amazing dad and human being. Thank God he can help my son become a man.

good news

WHAT??? Don't tease me! I responded in a text to Kati before immediately calling anyway. They are staying in NY. Her husband is transferring back, taking over some east coast clients and helping the company start a NY office. OH MY GOD! Kati and I kept saying to each other. I'm shaking and want to scream, she told me, I can't believe this! I was crying.

Friday night the whole family came over. I know this is kind of bittersweet for you, I toasted Kati's husband, who had really come to want the family to be in San Fran. But I promise we will try to make it worth your while! To good times in Sunny Patch!

We lit a birthday cake for both dads. We sat by the fire over games and conversation until way too late. The boys and their youngest roasted marshmallows and ran around. Their middle one practiced handstands and joined in on the games with the adults.

We are so lucky they aren't moving, my husband told me later. All along, he had been forced to reassure me that we'd be okay after they moved. For the first time, he was able to reveal to me how attached he is to our friends, too.  It's just easy with Kati's family and we get along so well, even the kids. Our families love the outdoors in very similar ways. We are incredibly lucky they are staying, he repeated. Yes we are.

autism re-defined

I really cannot describe Belac's situation better than Lori Warner, Director of the Hope Center at Beaumont Hospital in Royal Oak, Michigan. She understands not only the very real struggle of high-functioning autistics but also their potential to contribute to society with the right kind of guidance and education.

You can read her comments here.

By the way, I must say that ABC news does a consistently amazing job covering autism. The news is never sensational and always real. Every interview, expose, and bit of writing about autism I have been exposed to at ABC over the years has been thoughtful, interesting, and important to me as a mother.

And the doctor being interviewed by Robin at the bottom restates exactly what my pediatrician always tells me. Treat the symptoms, don't worry about the diagnosis. Nice in theory. As long as our broken educational system can treat the symptoms, I don't care what they call Belac. But you know. I'm just not sure that the system is equipped to deal with these kinds of nuances.

realizations

Walked up my driveway after shoveling, only to first hear Belac wailing his head off and then walking to our house with snowpants in hand. He was being told to leave my neighbors house and the door was still open.

"He was not behaving well, so I am sending him home," she called out unapologetically from her side door.

What horrible thing had happened? Not having been forewarned, this appeared just terrible. He was being kicked out of someone's house. Upon questioning him, he told me that the daughter had pulled a wii remote out of his hand and he had pulled it back. I didn't get much else but could see that he was hysterical and knew he was tired. I was also later told he was making sounds and it was bothering the other boys.

How old is she? 4 years old, he replied.

How old are you? 8 years old, he replied.

I believe he didn't behave well over there. I believe that he had stayed over there too long, then overstayed his welcome when he was annoying the others, and they had had enough. I believe he was given warning but should have left hours earlier. And I also believe that no one loves him more than his mom and dad. I can't and don't expect the same level of attention or patience or understanding from others.

You aren't mad at me are you? my neighbor asked me later. Of course not, I told her.

My husband and I agree. Neither boy should be over too long at anyone else's house without being overseen by either of us. Short and sweet is always better. We also agree. The wii is evil!

New Definition of Autism

Today's article in the NYTimes: New Definition of Autism Will Exclude Many, study suggests.

Exactly what I have been worried about as Belac ages and we plan for the future. We are lucky he is high-functioning, but it is a double-edged sword in a way. It means that the burden is going to be more and more on my husband and me to make sure he gets what he needs and especially that he is provided for - both financially and emotionally - in the event that he doesn't "make" it later in life.  The way this country is headed, and even if he makes only little progress from now on, I don't believe Belac will qualify for disability and the like. There just won't be enough money and with no objective test for autism, the definition will simply continue to narrow and change in the best interest of our country's fiscal needs.

The diagnosis of Autism is vague and subjective, and it is way over-diagnosed. I agree that the DSM, currently a mess on this condition, must be updated. But the fact is, my son would not be where he is today were it not for that diagnosis and the services he subsequently received. He has come a long way! But his challenges have been - and continue to be - very real and impairing. And even in this very rich school district of Sunny Patch we are so lucky to be in, we are faced with the struggle of meeting his needs.

Yes, you need passion and love the most. People who care, think outside of the box, and don't give up. But let's face it. You also need money. This is why my husband and I sweat so much about how we spend money and every purchase we make, taking aggressive measures to live below our means and sock away everything extra. This is why my family needs my husband's job so much. It gives us more confidence as we face the inevitable future. Ultimately, Belac, Jake, my husband and I... we will end up on this path by ourselves. I am sure of it.

The End, again

Dear Folks,

The time has - again - come and I am thinking to end this blog. I did this before, you know, and came back after a few months. But this time, I think I really ought to come back under other names and not tell a soul but my sisters - and maybe Ella and her sweet family - about it. Someone said a few things to me the other day. It had indirectly to do with my son and it truly upset me to no end. But since I can't be sure that this person is not reading me, I can't write about it here. What is the point of writing if I can't be just utterly honest? Why bother?

So it's something I am thinking about.

I want to say, though, before signing off - maybe for the last time, here, maybe not - that I love and adore my family. I am grateful. I am not here by myself. Whatever all of our shortcomings, the people in my stories here have all tried and continue to keep trying, and I think that this is what it is all about. Don't give up. Keep your dear ones close. I love you, Mom and Dad. I love you, sisters. I love you, hubby. And to my dear boys, Jake and Belac. I love you both more than anything in this world and I am the luckiest person - and a better human being than I ever would have been - because of being your mom.

Thanks for letting me share this story here. It was truly a blessing, and no one benefitted more than me. And just remember, through the thick and thin, you are not alone!

Gimky

home

Just took a peek at Jake, who I found reading in bed. I pulled his blinds down, then took his glasses and book. Look, I told him, you can read later but I want you to rest. Plus, you're going to have to come with me to pick up the car. I am? he asked. Yup! I don't want you at home by yourself.... I felt his forehead, now perfectly unremarkable to the touch.

I had sent him to bed right after school, yesterday. He complained of being tired, dizzy, and hot, which he was. This morning Jake still felt sick, apparently, though he seemed fine to me. I think I could have sent him to school but was on the fence. He didn't do any of his homework, last night. Didn't review for the second half of his science test, today, didn't start studying for a SS test on Thursday, just announced, or do any of the pages of math in prep for his Math test on Friday, also just announced. Let's not forget his research paper on Albert Einstein, due Thursday, a power point presentation on Nebraska, also Thursday, and a one-paged essay... also due on Thursday, come to think of it! The second marking period ends this Friday, hence the crunch.

Does this sound like a lot for a 1o year old in 5th grade? Sounds like a lot to me. I didn't have this kind of workload in 5th grade and it's no wonder school is stressful. He doesn't know it himself and wouldn't know to tell me, but I can just tell that school stresses him out. It's hard to manage this confusing mess of short and long-term assignments and I think this is the real reason why he feels 'sick' today.

So at 7:3o this morning, Jake and I agreed that even though he still felt 'sick', he'd get all of his work done from home today. I emailed the teachers to tell them Jake would be absent. This cannot become a regularly occurring habit, but a mental health day might be just the thing and what his mother ordered. Today, at least!

PS - my leg is much better today.

smooth sailing, sort of

My leg is killing me, tonight. I have it propped up on pillows as I lay here, trying to figure out what I did to make this happen. I have inspected, there's no bruise and it's not swollen.  Can't remember a collision with anything and I've been limping around for most of the day only for it to get worse.

What if it's because of something horrible? I ask. Gimky! my husband rolls his eyes as he tries to finish working, don't freak yourself out over something silly. Don't you feel sorry for me? I implore as I limp to brush my teeth. I want to vomit when I try to put any weight on this leg! And yes, that means no hanky-panky tonight!! We both laugh our heads off.

He came and brought me some ibuprofen and encouraged me to take a bath. I'm too tired and me, of all people, popped the 2 pills without any resistance.

Why can't I just accept the smooth sailing when it happens and believe that some of our problems can be small and solvable?

hodge podge

It's hard to write when you let a few busy days slip by without logging on. There's a lot to sort through.

Do I write about how I yelled at Jake this morning and he cried? Was my behavior that wrong? Maybe not given the circumstances, but as I dropped him off at school, I felt terrible. I certainly didn't help matters. And just last week, I watched him barely escape the path of a speeding minivan, barreling through a crosswalk. I never screamed so loudly in my life or hugged him so tightly....

How about the conversation my husband and I had when we went out to dinner on Saturday? When you were 21, did you ever think your life would look like this at 41? I asked. He told me that he feels lucky and that things turned out better than he ever dreamed. It was sweet. But then in passing, he told me how it was especially a saving grace that he had had a choice between severance and taking another position at his company. I looked at him like he was from another planet. Severance...? What do you mean severance? Now, he looked at me strangely like I, too, was from another planet.

It then dawned on me. Four years ago, Belac was 4-1/2 and we were in the thick of figuring out what to do. I wasn't paying attention to my husband or much else. Those were stressful times. Belac was getting 3o some hours of therapy a week and in a special nursery school. We were applying for financial aid for a $44K/year private school that wasn't even sure they would admit Belac for Kindergarten. We also came to the heartbreaking realization that we had to sell the house or sink. On top of that, my husband's entire department was dissolved and most of his colleagues and his boss all lost their jobs without warning, 4 years ago. My husband hanging on at the company was definitely what you call a saving grace.

Or maybe I should mention that the boys are now in an ice skating class? They can't be Canadian and not know how to skate, you know. But as I watched both of them teetering around, picking themselves up after falls, I found myself clapping from afar and teary eyed at their fine effort. I want so much for them.

What about the 2 different offers we received to take the Kia for 7ooo bucks? An astoundingly good deal given that the dash is beginning to look like a Christmas tree. One of the dealerships lost a deal with us, though, because they were pushy liars in the end. I want my kids to know that it always pays to be nice and honest. Always. At least you can respect yourself and sleep better at night, even if things don't turn in your favor.

I also made a new friend. Belac and this woman's son have been in the same grade together, sometimes sharing the same homeroom class in the 3 years. Then, one day, I saw the mom with her arms around a girl, a girl I had seen on many occasions in passing. A kid who I believed and knew to have some sort of significant challenges, but who I had never seen with her mother until then. It took my breath away and made my mouth fall to the ground to realize. She was also the mom of this girl! In that instant, our friendship became much more real and open. She knew that Belac had issues and I have to assume, was always open to a friendship with me. The change, obviously, had to have come from me. In any case, her son slept over the other night and she has since shared their story with me, which just breaks my heart. It deserves its own entry on another day.....

Just trying to catch my breath. Hope to be back tomorrow!

a car is a car

5 years ago, we had the kids in private school and bought a minivan so we could car pool with another family. We traded in our reliable and perfectly good Honda for a Kia Sedona. It was the cheapest van we could purchase new and it had the highest safety ratings. Our plan was to drive this beast to the ground.

The thing is, after a few years, the van began having multiple problems. Once, the sliding door fell open while I was driving on the Saw Mill with the kids. And then I was forced to the small sliver of shoulder in the dark of the night, cursing as I spent the next 2o minutes getting the door to latch shut. The car has since been in and out of 4 different dealerships - Bronx, Westchester, Rockland, Putnam - and the many mechanical problems persist, even after being serviced and the flat-out replacement of key parts. Even the corporate Kia office had been involved, paying for all of the unsuccessful repairs, but since they refused to replace the car, our only successful solution of the most urgent problem was to simply disengage the automated, electronic features of the doors. For financial reasons, we decided to limp along like this, barring any more safety incidents while always favoring our second car, a Honda. We swore we'd never buy a Kia again.

Then, over the week end, we took the van and went out with friends. Coming home, we first couldn't get our trunk to open and then couldn't get it to shut. We fumbled around with it, cleaned out the latch, tried a hard slam, a soft slam, begging.... everyone tried their different techniques before we basically had to tie the door shut. In those minutes, my husband and I reached the point of being DONE with this car. 

For a good run, we tried to make it work. I even caused the hugest stink with corporate Kia, a major hassle and time drain for me, but we just couldn't get all of the big and small problems reliably fixed. And this is what people do in the world. Something doesn't work or can't be figured out? They give up. They replace. It's not worth the effort. And it's certainly what we've come to here.

As for my son, though, I will never give up on him. He's mine forever and our responsibility. A quirky, funny, reliable, smart, creative, and impossible kid. He loves and feels deeply and needs approval. He tries really hard, more than most kids despite the often spotty results. He knows right from wrong. And he makes progress. The pediatrician saw Belac the other day, and I know he was testing him. He asked so many questions and gave so many instructions and Belac was so good, even funny at times. Why is he still getting speech? the doctor asked, he's doing great! But on some days, a lot of days recently, you have to look harder for the progress and banish someone else's measuring stick. 

Look. I am not keeping this Kia under any circumstances. But I want to tell the school and really need them to know. My son is not a car.

inspiring

Imagine losing your legs at age 1. All the parents might hope is for their kid to live as normal a life as possible and participate in as many everyday activities as possible. However, this particular girl grew up to become an athlete of all things. Look at this stunning photo of this girl, proudly running on the beach in bikini. You wouldn't catch me in a million years doing that and I have both my legs!

I would love to know her parents.

a walk in the park

All I need to do is walk Belac to school and continue on with the dog around the block to know that everyone has something. Nothing is exactly 'fair' for anyone.

There is my next door neighbor who is now in her 7os. She has lived here since she was 22 and now has children and grandchildren in town. But her husband wants to move to White Plains, where they can get a condo and not have to deal with the house. As I look up to their front door, I see just how treacherous their steep driveway is and can understand her husband's concerns. These discussions, however, absolutely pain her.

Then there's the house I pass, everyday, as I turn the corner. Still empty from a foreclosure almost 2 years ago and described as a 'sugar puff' in a listing I once read. Someone had really wanted it at one time, enough to spend $75o,ooo on it. But now listed at $45o,ooo, no one is even touching it.

I kissed Belac goodbye and continued on my way.

There's the father I saw, waiting with his running car in the handicapped spot for his child's aide. As I passed, I heard a child moaning and saw that he was buckled into a car seat that seemed much too small for him. Whether the child had language, I don't know. The father was tall and lean, obviously on his way to work, and spoke with an accent. Portugese, maybe? He held a big bag of playdough jars and cookie cutters, no doubt for PT or OT. I resisted the urge to turn to look as the child was helped out of the car.

I turned another corner and waved to my Korean neighbor. I see him everyday as he brings his grandchildren to school. I have no idea if he speaks English or how many people live in their little house - 3 generations for sure - but in summers, he turns the yard into a green oasis and is never inside.

I pass Cecilia's house, whose mom with Alzheimer's lives with her family of 5.

I look at my watch. I have to hurry up and get to school, today. I need to go over my schedule with the secretary. And I can't leave her out of this story, either. Her family of 4 has just moved in with her husband's parents, having lost considerable money in their business which just folded.

And then, I approach my own house and pause to take a good look. What would I say about this one...?

Nothing remarkable. Just another story of another family trying to make it work. That's all.

option impossible

Oh my God, this is awful! The aide is beyond terrible and the child who looks most like Belac is missing everything. She barely has a pulse and might as well not be there. How could they think I would ever approve of moving Belac in there...? The main teacher seems fine enough but is bursting from the seams. She's 11 months pregnant and looks ready to give birth any second. She will soon be gone, and then what? How is this remotely an option? Do they really take me for a complete idiot? Actually, what the hell is going on?? This is surely a budgetary decision. There is NO WAY they are looking out for my kid by thinking they can put him in this class under these circumstances! Or have they simply given up on him...?

Down in the office, one of Belac's teachers asked with a smile. So what did you think? Nice class, right? I took a deep breath. It pays to be nice and it's gotten us far. But there is no way I am going to let this happen! No. ***ing. way. My son is keeping up academically in a typical class with a shared aide.  But it's been especially hard for him to sustain focus this year. He always had a one-on-one in previous years but now shares an aide with not one, but two kids.... I had put on makeup and jewlery, this morning, and my most easygoing smile. If I lost it with them, now, we'd get nowhere and maybe even find ourselves in a worse place. Then again, maybe I should go ahead and lose it and demand a one-on-one while I'm at it. I took a deep breath. Can I speak freely? I asked the teacher, who nodded. It's a lovely class, but here are my concerns....

dim

He's perfectly normal! my friend exclaimed as she hugged me goodbye. She and her family had come to Sunny Patch to take a breather from the city. Our kids ran around and played like not a day had passed since four years ago. Only thing about perfectly normal, is that he's really not.

Had a meeting at 745am with Belac's teachers, this morning. He's struggling in the classroom, even with the aide. They discussed a modified class and all of his services. It's not what you'd call even remotely 'normal'.

Gimky, my husband had said to me before drifting off, last night, he's come a long way. And upon zooming off after the meeting, today, noted. It's all the more sad... for awhile there it seemed like he'd be able to make it.

I spoke to my mom briefly and she offered me money. Mom, we have money. And having more of it is not going to help. Actually, I really don't know how to make things better... but I'll let you know when I figure it out, I added, trying to sound upbeat.

I see that Kati has already called twice this morning. But I can't speak. Can't write. I don't want to hear anymore what people think or listen to their empty reassurances, even though hers is probably the most substantial there is.... I just really don't want to talk to anyone.

list

8. The view from my kitchen window tonight.

No conviction to write today. So I compose a list of things to be grateful for:

1. My dishwasher, running as I write. I didn't have one for most of my adult life. What a luxury!

2. My health, knock on wood. Though I clearly see how frumpy I appear in the Taiwan pictures and must get off my butt NOW.

3. A new violin student, an adult, who can come for lessons while the kids are in school.

4. Having time to help my kids and to just hang with them.

5. The roof over my head that accommodates us and anyone else who needs or wants to come.

6. My family and friends.

7. Having made the final payments on our cars. Especially hoping they'll now last for the next 1o years.

Not a bad list, right? Lots of good stuff there.

dear photograph,

These are so interesting and beautiful. Reminds me that time is not stopping and the best times are now!

Sleepless

Got a phone call today from Sunny Patch. It was the school psychologist from Belac's school wondering if I could come in next week. It was all fine until she said, very casually, we want to explore the possibility of putting Belac into another class. My heart sank. At pickup, I pulled aside Belac's aide and picked her brain, all the while wiping away tears from my face that I tried hard to suppress. Later had Jake, Belac, and Izzy all doing homework and eating snack at my dining table. I noticed Belac was doubly slow in getting his same work done as izzy. He could do it all, but he needed to be prodded and redirected constantly. He is so smart and capable, but his lack of sustained focus impairs him. Again, I wonder about medication. This from me of all people, and now hubby, too. Kati came later and we talked a lot about Belac. What we could do outside of school. Finding him a piano teacher who is not me, as he loves music. Last year we had karate and some swimming and maybe we need to bring that all back... Then a few hours ago, Jake came to my bedside. He was lonely, he said, and was whimpering. I went back to his bed and laid next to him. He told me that he was having bad thoughts, what exactly he couldn't say. Every time he almost fell asleep he whimpered and woke up. I don't know what to do, he kept saying. I don't know what to do, I thought to myself, despairing, while stroking his hair and reassuring him as gently and calmly as i could. I told him to think about being in the lake in Canada and remembering how nice it was to feel the sunshine and the cool water, hear the ripples of the water, and remember how peaceful it was to just hang there. Do you remember that feeling? Sort of.... Or that quiet feeling, looking up at the sky full of stars? For at least an hour we went on like this.... Finally, he fell asleep and I breathed a sigh of relief. But as I went back to my own bed and lay sleepless, I could only think. Why aren't my kids taking piano? How could I have let that happen? And the structured physical activity that I let go for Belac? What was I thinking? I thought he needed the downtime, this year, but maybe not. I thought Jake needed less on his plate, less running around. But maybe I had it all wrong. Why didn't I call the pediatrician earlier to find out about medication? But popping pills can't exactly cure the symptoms of autism, right? Otherwise someone would have suggested it already? And what if Jake's sleep thing is not just growing pains but the result of some horrible undetected problem, like god forbid a tumor? I know its terrible to think about these things at night and I will be more reasonable and productive in daylight. But I feel I need a handbook and someone to tell me what to do. I am there for my boys and i love them and bend over backwards them. Hubby, too. But as long as the same challenges continue to linger and a clear fix alludes us, I feel helpless and sad and can only think. This is so hard.

bed and breakfast

I only came to know the degree of my friend's money troubles recently. I thought because her husband had finally found work that things were on the mend. But even now, what money they have is being juggled around to pay certain bills first. Her husband had been out of work for almost 2 years. They pieced together an existence over odd consulting jobs as she studied (and earned) her license and continued to help her kids in their studies, now in English. Finally! Her husband got a job in May, but in California. There was no choice and no room for negotiation. It was a job and a job in this difficult economy. They had accumulated huge debt. The plan was, she and the kids would come later, after they researched school districts in California. Turns out, her husband is now able to move home for the next 6 months because he will take over the clients of an east coast consultant on maternity leave. This is the beginning of some relief for them, as he can let go of the CA rental until they return in July as a family. And now their Sunny Patch house is successfully rented from May 1. She hesitated and then asked. Will it be okay if he comes with us in May? That makes 5 of us for at least 8 weeks.... I was fine with it and hubby agreed. We are very fond of this family and I love this friend and her girls. I told my husband, it means their kids can finish school here and they'll save themselves 2 months of house payments which they obviously need. Amazing that we can do this.

a new routine

Jake had his first session with Mr. Spade, yesterday. I came through the kitchen now and again and listened. Mr. Spade obviously knows the material and how to offer clarity. And most importantly, he was so nice, calm and encouraging. There was absolutely no drama and it dawned on me that this is really what Jake needs to work most productively. Not a mom that's going to get emotional over every little thing.... I can see Jake has some really strong math skills, Mr. Spade noted at the end of the session. I patted Jake on the back, you hear that? You do! So every Tuesday afternoon they now have a date to both review previous material and touch on the new. It's day 2 of 2012 for us and I feel there is something remarkably different in the air. We were all in bed by 8:15pm last night, totally exhausted. And though the house is cold and drafty, my husband put space heaters in everyone's bedroom and we slept luxuriously. This morning, I heated up leftovers for both breakfast and lunch and Jake munched on fruit while finishing up some writing. He didn't think twice about pulling on his winter jacket, this morning, having not bundled up the previous day. I zipped him up and got his heavy bag on his shoulders as he ran out the door. See you later, Mom! he called over his shoulder. He was going to have to run the whole way to make his 7:45 class on time. Even though we've always been on the same team, it finally feels like it.

anew

Walked with Jake to school, today, and carried his sax. He was shivering and his teeth were chattering. He was wearing his hoodie and fleece, but it wasn't enough to keep him warm on this frosty morning.

It's cold isn't it? I told him. Walk fast coming home, okay? I don't want you getting sick....

Okay, he nodded. We sure didn't have this kind of weather in Taiwan, he sighed.

I know! And it's not even really cold for NY in January. We have some things to get used to again.

I had let him sleep in until 8am with the agreement that he get dressed and eat breakfast in 20 minutes and then we'd run to school together. He was literally a rag doll when I pulled him up and put his legs over the edge of his bed. You'll be tired today but better tomorrow, I reassured him. I helped him pull on his clothes fast, handed him a towel after he splashed his face and led him downstairs to a bowl of steaming noodles.

This short morning there was an overwhelming sense of calm with both boys. No drama. And I didn't even have time for coffee.

post partum

Hubbie and I laid in the dark for hours, talking and unable to sleep. Then a few minutes ago, Jake arrived.  No nightmare, no night terror, no drama, just...  Mom? Dad? I can't sleep. I'm also lonely.

Interesting that in our 11 nights away, there was not one sleeping incident with Jake. We were far, far away in a strange place where the time difference and language barrier were unsettling, but we were together 24/7, our kids never leaving our sight, and all slept in the same room every night. They were secure.

Now hubbie and Jake are downstairs making warm milk and honey. I hear the microwave beep, the chairs being pulled out, and muffled conversation. I love that Jake has been so inquisitive lately and that we had the past weeks to focus outwardly on completely other stuff. It was an amazing trip and good for all of us.

2012 begins

Just made a chopped salad. Making enough rice so I can pack fried rice for lunches tomorrow. Loads and loads of laundry washed. Dining table unearthed under piles and piles of stuff. Jake spent a couple of hours and finished his science project. Thank God. This time I did not oversee the writing. Packed up his bag for him and took a peek. His 2 pages of writing were full of details in clearly constructed paragraphs. His writing has come such a long, long way and I was so proud. Interrupted his play date to tell him so. How did you write so beautifully?? I asked. He smiled broadly and pointed to his head. Husband about to start the grill. Boys playing with the neighbors. They love Allie's boys and thank God for all of them next door. The house is still messy but in a better state. The week is now allowed to start!

As for 2012. I resolve to look for and cling to the positive. Somehow I will find a way to hold the highest standards while remaining positive and hopeful. I think this involves looking more at the bigger picture and remembering more where each of us has come from.

I would also love to take my boys to the Grand Canyon, Alaska, and Israel in the next years. There is something about going to foreign places and realizing firsthand how amazing and vast this world is. Something special about navigating and discovering unfamiliar territory, just the four of us and far away from everything we know. Somehow I will make it happen.

Peace and Love to all in 2012.

Home

Slept til after 10. Belac up since 345, but he obediently stayed in bed until 6. He came in to tell me he was hungry at precisely six. There's leftover pizza in the fridge, I told him. At 1030 I followed the trail of lights into the kitchen and other places and saw that he had taken the pizza box out, helped himself to a slice, leaving crumbs on a plate, and that he had had some water out of a glass. There were also a dozen drawings laid out on the living room floor. He had taken care of himself and amused himself. Good for him. I nudged my husband and jake out of bed. It will only get worse if we don't get up now. The 13 hour time difference is a killer and how the kids will manage school tomorrow is anyone's guess. I'm sad to be home. Back to piles of laundry, a messy house and the usual worries. What an amazing trip it ended up being to this far away, stimulating place. Last night, my husband and I tried to recount every moment of the past 11 days. I could still touch and smell it all. Today, it feels like a dream, but a really good one.