May 31, 2012

Five

Dear Moe,

Today you turn five. I've been thinking a lot about what I want to tell you on this day. I've imagined all the things moms tell their boys on their fifth birthdays. How big you've gotten. How you'll be heading off to kindergarten soon, officially a big kid. How I hope you enjoy your party.

But I can't really say those things to you. Of course you have grown, but you are still very much a little kid. You are still in diapers. You are still learning to communicate, need help eating and getting dressed. You are not a tall boy (you can thank me for that) and next to other kids you still look so very small. You explore the world through your senses. You are beautiful and innocent, if sometimes a little, shall we say "spirited."

You won't be going to kindergarten next year, and we aren't having a big birthday party for you. Though we did celebrate your birthday - and YOU - at the autism walk . We were a team for you and all you've accomplished, and all you will continue to achieve.

I don't know how much of that you understood. But I'm pretty sure you enjoyed your cupcakes.



With every passing year, Moe, you bury yourself further into my soul. Even as your needs get more complex, as I find myself so often at a loss over what you want or need, I feel our connection growing.

When I wake you up in the morning, you smile at me and hold out your hand. When I sing a song, sometimes you sing along with me. And though you don't run to me when I pick you up from school, or tell me you love me, you do still like to cuddle up on the couch. And you have a smile that I know is reserved for me, when we are sharing a funny moment or simply enjoying each other's company.

So much of your days, Moe, are spent with people who are trying to get you to change. We ask you to learn new skills. We ask you to calm down, or play appropriately or try to use words. But there are some things I hope you never change.

Never stop singing.

Never stop experiencing the world as a joyful place.

Never stop giggling, even if you are the only one who knows why.

And never stop eating you cake with as much gusto as you like.


May 29, 2012

My Excuse

I have so much to blog about but just have not been able to. Some things, like the details of our latest IEP, I can't write about now. Other things, I would love to write about, but the kids really do require constant attention. Here's a snippet from today.

  1. Jelly is momentarily occupied watching TV.
  2. I hear a noise from Moe's room. He's on top of his bed, messing with the blinds. He's already broken one of the strings so he really can't be up there. Oh, and he could fall. I get him down.
  3. Moe runs from the room. I start to make dinner which will take all of 5 minutes because I'm just reheating leftovers. Moe starts asking (pointing to the gate) to come in the kitchen. I notice he has a dirty diaper.
  4. I bring him to his room to change him. He's wild, tired, and hungry and starts grabbing and kicking me. I know he's trying to tell me he wants to be eating, but I'm so flippin' tired of being kicked every time I change a diaper.
  5. I get through it, and nearly trip over the dog who insists on being in the way whenever there is any commotion. I make it back to the kitchen.
  6. Plate the quiche and and the chips I didn't eat at lunch. (Surely, I will lose at least a pound for that, right?) The chips entice Jelly to come to the table. I go look for Moe.
  7. He is once again on top of his bed. I get him down. On the way back to the dinner table, I notice Jelly's shutters are open, and the valance is messed up. I see Moe has somehow gotten the finial off. I suspect he's been working on that for days. I pick it up and put it "someplace safe" for when I can get a step stool or Jeff gets home. It's probably already lost.
  8. Safely at dinner, I get exactly 23 seconds before Jelly pushes herself back from the table. She gets down to retrieve her new Dora bathing suit which she has been carrying around all day. She climbed back up and asks to be pushed back in. I get up, and push her in. "Jelly," I tell her, "don't get down again."
  9. She pushes herself back from the table. I push her back in. Repeat 1,000 times.
  10. "Jelly, no more chips if you push yourself back again." It works!
  11. Moe gets down from dinner table. I make him sign "all done." I feel like I've done my job.
  12. I hear Moe on top of the bed tent. I trip over the dog. I get Moe down from his bed.
  13. He comes back. I slice an apple so we can work on using a picture card to request more.
  14. He doesn't want any apple.
  15. Jelly starts asking for tape. I tell her no. She asks. I tell her no. She asks. I tell her no. Sheasksitellhernosheasksitellhernosheasksitellherno. She wants tape to cover a staple sized hole in the baby gate. I tell her she can have one piece of tape if she stops asking. She is quiet, but I can tell it is really hard. It is worth it for the 30 seconds of silence.
  16. I trip over the dog looking for the tape. I give a piece to Jelly.
  17. Moe is spinning wildly in his swing. I decide he needs a bath. I trip over the dog.
  18. Jelly hits me while Moe is in the bath and I am writing this. She gets a time out, which involves taking away the Dora bathing suit.
  19. I think I hear Jeff pulling into the garage. There is only one question left. Beer or wine?

May 18, 2012

It's Not a Holiday Unless There Are Broken Dishes and a Trip to the Emergency Room

Mother's day started out pretty well. I didn't set any unrealistic expectations. I didn't ask for an elaborate brunch and I specifically requested that we NOT have breakfast in bed, which would have either meant eating alone, or ending up with spilled coffee and sharing all my food.

Jeff made a lovely breakfast for me, including eggs, bacon, and homemade hash browns. I drank my coffee. I opened a gift from Jeff (the new Pioneer Woman cookbook - yay!), and some cute things the kids made at school. Later that afternoon, I got to spend some time alone at my favorite local coffee place.

Around, four o'clock, I decided to take a nap. I so rarely do, and it seemed like a good way to finish up the afternoon. About five minutes into it, I heard a loud crash near Moe's room. I did not jump up. I thought, "Jeff has got this." Maybe 30 seconds later, there was a second crash and the unmistakeable sound of something breaking. I jumped out of bed.

I opened the door to find Moe standing in front of the linen closet. On the floor, there were not one, but two, dish packs, the ones that I use to store my china. Moe had climbed the closet shelves, reached the dishes, and pulled them down. They are heavy, of course, and simply crashed to the ground when he grabbed them.

Before
I opened the packs and saw that quite a bit was broken. My heart sank as I brought the two packs to the kitchen to survey the damage. He had pulled out a pack with soup bowls: every one was broken. Every. One. The other pack contained saucers. One saucer was intact, another had just one clean break and may be salvageable. Everything was completely shattered.

I was crushed. I didn't register for china when we got married; I asked my parents for these dishes. These dishes, that we used at every Passover seder, at every special occasion, just gone in an instant. These dishes, that I carefully packed and placed on a high shelf, that I specifically didn't put in storage when we put the house on the market so they would be safe, were now, at best, a future mosaic. Did I mention my parents carried these back from their honeymoon in the Virgin Islands?

Moe, by the way, was fine. The trip to the ER was unrelated, if you can believe it.

After?
I sobbed on the kitchen floor. I'm fighting back tears as I write this. My parents assured me that these dishes are just things, that they are unimportant. And they are right, of course. But it doesn't change the fact that something really special to me is gone, and that Moe, as much as I love him, is impulsive and destructive, and only getting more so. No matter how closely I watch him, he is fast. I'm afraid he's going to really hurt himself.

Which brings me to the next part of our story. Moe was finally in bed, and Jeff and I went to check on him. He had a dirty diaper, as he often does about an hour after he gets into bed. We changed him, which is an emotionally exhausting two person job that requires a complicated dance of hand restraint and dodging kicking legs. While Jeff was finishing up, I was fixing Moe's bed (another story I'll have to share another day). Somehow, Moe launched himself off the top of his dresser, and in an instant was on the floor. He was quiet for a second, and limp (though not unconscious). He was moaning. I, having just read a story about a little girl who was knocked to the ground, told Jeff, I'm calling 911.

Jeff insisted we wait a minute and see. Moe refused to walk. He had one eye closed, and was waving his arms around. He would not stand. Jeff brought him to the couch. He was crying and I thought his forehead was swelling. Jeff didn't want to spend the night at the ER, but I insisted he at least go to urgent care at our doctor's office. The wait time online said 30 minutes, so Jeff headed out. Unfortunately, they were closed when Jeff arrived. Oops.

He ended up taking Moe, who I could still hear moaning on the background, to the ER near the clinic. Moe was fine, and now I cannot even find a bump on his head. I think, in the end, he probably got the wind knocked out of him and got pretty scared but wasn't actually injured. I'm thankful, but once again come out like the over-protective mother. But with Moe, how can I tell?

Hope your mother's day was relaxing. Can I get a do-over?

Tray image courtesy of Pennello Lane.

May 14, 2012

May 7, 2012

Guilty

I had two majors in college: Sociology and Communications. One of the best classes I took was Sociology of Religion. In it, we discussed how the tenets of various religions guide the behavior of their followers.

For example (and I am greatly simplifying here), the Calvinists believed that their ultimate salvation was pre-destined by God alone. From a sociological perspective, what would this mean for people's behavior? Because people care what others think of them, and because no one wants to think they aren't one of the chosen ones, a lot of emphasis was attached to the values of thriftiness and hard work. This "Protestant work ethic," was deemed to be a sign that one was "chosen."

Observant Jews believe that a messiah will one day come, bringing with him an idyllic messianic age. The messiah, however, will only come when we are good enough to deserve it. But life is complicated. How do we know how to behave? By following the rules, of course. Judaism is quite a rule-based religion. There are rules about what to eat, how to dress, how to celebrate holidays, even how and when to have sex within the confines of marriage.

Logically, then, if you don't follow the rules (and it is nearly impossible to follow all the rules) you are the reason that the messiah does not come.

Think about that. The messiah hasn't come because you aren't good enough. You drove a car or turned on a light on Saturday morning, and now the messiah will not come.

Oy. Talk about Jewish guilt.

Ah, guilt. Such an ugly, gut-wrenching feeling.

And parenting, like religion, is full of it. Did you breastfeed long enough? Let your child cry it out? Use a pacifier? Return to work too soon? Choose the right preschool?

And if you are the parent of a child with special needs, the guilt just keeps piling on. Did you vaccinate? Not vaccinate? Were you overweight during pregnancy? Is it somehow my fault that Moe has a disability? I'm so full of guilt over Moe's autism, I could write a book. Maybe I will.


I suppose guilt could be useful for some things. A healthy amount of guilt helps you keep a clean conscience. Maybe you snuck out of the house as a teenager and got away with it, but the guilt continued to plague you, and you decided it wasn't worth it. Good guilt. Call your mother kind of guilt.

But much like its cousin regret, guilt is a backward facing emotion. It forces you to dwell in the past and prevents you from moving forward. This is bad guilt. This is eat-away-at-your-soul, keep-you-up-at-night guilt. And it is entirely unhelpful.

We had Moe's IEP today, and though I can't say much, I will say that Moe has made very little progress toward his goals during the last two years. So a couple months ago, we had a full independent assessment done by a very well-respected psychologist. She observed him in school, and showed us why his current program isn't working for him. And while I am thankful that we have this information now, I can't help but ask myself why we didn't do this sooner. Have we just wasted two critical years of Moe's development?

As my dad and my best friend both told me, it doesn't much matter. We are here now, and all we can do is look forward, make new decisions based on the information we have today, and hope they are the right ones, ones that will help him reach his greatest potential.

But that is easier said than done. Especially with 5,000 years of Jewish guilt to contend with.


This post is inspired by I AM FORBIDDEN <http://amzn.to/AyvkEl> by Anouk Markovits. Though not sisters by blood but through their Hasidic faith, Mila and Atara views the rules and structure of their culture differently. Mila seeks comfort in the Torah while Atara searches for answers in secular literature she is forbidden to read. Ultimately each must make an irrevocable decision that will change their lives forever. Join From Left to Write <http://www.fromlefttowrite.com> on May 8 as we discuss I AM FORBIDDEN. As a member, I received a copy of the book for review purposes.

May 1, 2012

Jelly's Party

I wanted to throw Jelly a really nice birthday party. I thought she would appreciate having all her friends from preschool and music class together in one place. Maybe go to one of those bounce house places, or do it in the back yard. But in the end, I couldn't get it together. It was just too much to think about.

So I invited just our best friends, the closest thing to family we have in the area. We had pizza and cake. It was a hot day, so we ate and played outside.


The kids entertained themselves with the hose.


Moe entertained himself with cake (and trying to steal everyone else's cake). Though he did get in on the hose action for a bit, and played with the water table - a favorite since we got it for him on his first birthday.





Jelly insisted on a Milli (Team Umizoomi) cake. This is not something you can buy at the grocery store, so I made the cake and ordered a special edible icing topper. Nothing went smoothly with this cake. The chocolate didn't melt fully so it was more like a chocolate chip cake. The icing topper was too big and kind of flopped over the top of the cake.


As it turns out, three year olds (and seven year olds and not-quite-forty year olds) are pretty forgiving about such things.

Jelly spent a lot of the day playing with her new Fisher Price digital camera.



And rocking her new dress up clothes.


Happy birthday baby girl. I hope you had a great day.

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