What I Wish I Knew. Again.

End of year teacher gifts: (Erin's) homemade pepper jelly transformed (by my last minute aka the night before attempt at craftiness) into "Leo's Famous Red Pepper Jelly". Met with great enthusiasm by one of Leo's teachers, whose thank you card read: "Leo's gorgeous self on a jar of red pepper jelly? Must keep forever! He was so happy to give me this and I am so tickled by it...Leo is one in a million!"

As of last Tuesday, Leo is officially finished with third grade. Not sure how that happened. By all accounts, it's been a wonderful school year for Leo. This year marked his move to a new "placement" that has challenged him and enriched him. I don't think there is any question that he rose to the occasion, as we all hoped he would. He had a busy schedule, moving from a self-contained class for learning disabilities (he's the only student with Down syndrome in the class, a first for him) to general ed, and across the hall to yet another classroom for math. For the most part he was in charge of tracking his own schedule, knowing that, for example, at 10 a.m. he had music, at 11:30, P.E., and so on.

Hard to believe that when he started at this school back in kindergarten, this is the kid I feared would bolt from the school.

Last week, Ellie, Harry, Lucy and I were lucky enough to catch Leo in the school talent show where he was part of a dance routine, performed to Shakira's "Waka Waka," and yes, you heard that right. On my end, it was a bit of a disaster in that it happened to be in the middle of the twins' nap time, in other words: Babies Meltdown Central. And did I mention there was a thunder and lightening storm as I unloaded everyone from the car and I managed to temporarily lose my car keys when it was time to leave?. All in a day's work, my friends. Well, Leo could have cared less about all of this. What mattered to him is that we were there, in the front row, squirmy, whiney Harry and all, to see him in all his Shakira glory. 


"Leo had a wonderful year," Mrs. F, Leo's third grade teacher, wrote to me in an email early  last week. "Please keep in touch. I have been going to high school and college graduation parties of my former students-Invite me and I will come to Leo's!" 



How Leo keeps busy when I'm putting Ellie to bed: "Planets."



I am so grateful for Leo's cheerleaders, like Ms. F. For the teachers and therapists and "team members" who have always had faith in him, who have held my hand and reassured me when his route changed course. I get so attached to these teachers, I actually cry as I sit down to write the year end thank you cards. 

While I'm relieved and reassured by how well Leo is doing at school, at home, lately, things have been a little more complicated. OF COURSE if there is going to be any problem with Leo's behavior I want to have the "problem" that we have, which is that he seems to reserve all of his antics for home and for me, rather than school. Better of course, that he's the pride of Mrs. F's class (Yes, his teachers still look at me like I've lost the plot when I describe some of Leo's behavior at home. They see NONE of it). Wonderful! But it sure doesn't make life at home unchallenging lot of the time.

Lately and all too often I feel like I have absolutely no control over him. He never used to have a temper and he suddenly does. He frequently shows little regard to house rules and I find myself muttering to myself (out of his earshot, of course) "You just do whatever you want, don't you?" He wants to watch TV? He turns it on, even though he knows TV time is over. He knows the twins are not allowed in his room unless I'm in there with them and yet, he opens the door and in they scamper. He refuses to close the door and in a moment of frustration I hold it closed. He's so strong that I think in a moment of frustration he could break it down. 




A few times over the last couple of months, Leo has demonstrated a behavior unseen in him for years: refusal to leave a place. About a month ago it was the park, where he was having fun (which sort of made sense). A few weeks ago it was the community center where Ellie takes swimming lessons. He shut himself in a locker and wouldn't leave. That...made no sense. At age five, I could throw him (though not easily) into a stroller and call it a day. Now? He's almost nine years old and close to seventy pounds and his stroller days are long gone.

And yet. This is the boy that throws his arms around Erin and me when Erin returns home after working late and exclaims "Group Huz!" (Group Hug.) A few nights ago after an ugly altercation between Leo and me about his refusal to leave the twins' room at their bedtime, Leo took a particularly long time selecting a book for me to read. "Just pick one!" I pleaded, weary and beaten down by the power struggle and so eager to be finished with the seemingly never ending bedtime routine.

He handed me a picture book version of Charlotte's Web. 

"Just like you read when you were a little girl," he announced. Leo knows I'm a sucker for Charlotte's Web. While it didn't occur to me at the time,  I really think that was his peace offering to me (in all the commotion of bedtime we had not resolved the argument he and I had in the twins' room). Leo has his own unique way of apologizing and he always does when he knows he's done something wrong.

The guilt gnaws away at me. If our house were less busy, if things were calmer, if there wasn't always a toddler whining in the background or Ellie needing something, would I have more patience? More time to stop and discipline Leo properly, to pay attention to his needs at that moment?

I think so much of his behavior, his anger and frustration at home, is attention seeking. We make every effort to give him as much as one on time as possible on the weekends. And as guilty as I feel? I firmly believe that in terms of Leo coming from a big family, the advantages (social, language, the list goes on...) far outweigh the disadvantages. Not to mention, this IS our life now. This is his life-he is one of four.

Enroute to visit Grandma Jerry in New Orleans last week.

Refusing to turn off the TV, not leaving a room or a place when asked, it's clear to me that it's all about power. I can only speculate that he feels he has none, or very little (I know the feeling, buddy). 

I know what my sweet boy is capable of. I see it on the mornings that he gets dressed without being asked and proudly waits for me at the bottom of the stairs in his favorite tshirt: Super Grover, declaring: "The World Is Mine." I see Leo's overwhelming capacity for empathy when he races to get Lucy's beloved stuffed Barney after she falls and skins her knee on the driveway. 

Only Leo would throw his sturdy arms around me after I place a steaming plate of scrambled eggs in front of him at dinner time, declaring me, "Best Mommy EVER!" 

When I consider how far Leo has come...how far I have come, well, I can only hope that someday I'll look back on all of this with a lot more wisdom than I have now. I know the answers will arrive. They always seem to. I still think of those early, befuddled, grief-filled days with newborn Leo, where I, still numb with the surprise diagnosis would stare at him with so many questions: What do  I do? Why did this happen?

All I can think is, if only I'd known then, that someday a teacher would write me a note declaring Leo, "One in a million." 

Because he certainly is.