June 27, 2012

Not Quite Mistakes

A few days ago, I woke to the news that a business school classmate of mine passed away from lymphoma. He was not a friend of mine, though I always liked him. I wish I had known him better.

Later that day I got an email from my best friend in business school. He stayed in New York while I moved back to California and we drifted apart. It has been many years since I've seen him and it was nice to hear from him. I often wish I had stayed in New York for a few years after graduation. I don't think that opportunity will present itself again.

Last week, I had dinner with a group of my closest college friends. We were all dorm-mates our freshman year and remained close through college and beyond. But since we moved on from college, both literally and figuratively, we don't see each other much, at least not as a group. This was the second time we've gotten together and it was great.

But both times we've met, I've left feeling a little sad. Maybe wistful is a better word. I miss the closeness we had, although it comes back quickly. And of course we reminisce. I can't help but think of relationships past, and some that never came to be.

Part of this wistfulness has to do with having a chance to get back to myself for a while. We meet without our kids and spouses and it reminds me how different life is now. Being Moe's mom, or maybe just motherhood in general, has changed me and I often feel like I've lost some of myself. Perhaps this is just the normal cycle of life. Perhaps it is growth.

I am not unhappy now though my life certainly doesn't look anything like the one I had imagined in my twenties. A child with special needs. A career on hold. Even though I am the same person, sometimes I look back on choices I've made and wonder "what was I thinking?" But the truth is, I made the choices that made sense to me at the time, and that is all anyone can do.

This post is inspired by Getting Married and Other Mistakes by Barbara Slate. This graphic novel offers a raw, yet humorous look at what happens to Jo after a surprise divorce. Join From Left to Write on Thursday, June 28 as we discuss Getting Married and Other Mistakes by Barbara Slate. I received a review copy of the book and all opinions are my own.

June 23, 2012

Summer Moves Along

We are at the end of week two of our ten week summer break. That's one fifth--twenty percent--done. Not that I'm counting. (Side note: anyone know how to get an em dash in Blogger?)

We decided not to send Moe to the extended school year program at his school. I still don't feel comfortable writing publicly about the process we're in, but I will say that we have wrapped up over six hours of IEP meetings and have not yet signed the IEP. Moe hasn't made the progress we believe he is capable of, and so this summer we want to do a more intensive program with him, including 1:1 ABA, speech and OT.

I am both nervous and excited about this. It means many more hours at home. I am having flashbacks to the lonely, scary first year after Moe's diagnosis. But it is what he needs right now, and we are going to make it happen.

ABA hasn't started yet, so I've had a lot of time with Moe. He is doing okay. He is still showing many aggressive behaviors, his sleep is off, and he is having a lot of sensory regulation issues. But this week was better than last, in part because Jelly is back in preschool three days a week. I've realized how much easier it is with Moe when it just the two of us. I can actually take him out of the house. We can play in the backyard. He gets the attention he needs.

Moe and I went grocery store. I dragged him along to a number of errands, which included many times in and out of the car. We can use the iPad without Jelly climbing on me to see. I realized how much attention Jelly requires, and that neither of them are getting enough from me. I am not saying this to be tough on myself, but it is true. If they had each other to play with, things might be different, at least at home.

But it isn't just attention Moe needs. He needs behavioral instruction that I don't know how to provide. Being out and about isn't always as easy as it was the other day. Yesterday we went to pick up Jelly at school and she was on the playground. Moe, of course, wanted to run away, but I couldn't let him. Jelly was on a bike and didn't want to get off. And all I could do was restrain Moe and plead with Jelly. Nothing terrible happened, but these moments are exhausting, no one is happy, and it is time to get some help. Behavioral support for Moe is on the way and I'm looking into getting some babysitting help for Jelly.

June 11, 2012

Aggression Has Returned Just in Time for Summer!

I am an emotional wreck. For one thing, I have a cold. It started off as something pretty minor, but has only gotten worse, fueled, I'm sure by stress and lack of sleep.

The last day of school was hard, even though this year was really tough. Moe met very few of his goals and even regressed in a number of areas. Despite that, or maybe because of it, it was hard to say goodbye.

Moe has once again become quite aggressive. He fights almost any time we try to interact with him, especially for things like diaper changes, which obviously happen several times a day. It is 8am, and I have already been scratched across the face and had my glasses pulled off. I just updated my contact lens prescription so I don't have to deal with that last part anymore.

His behavior has been gradually getting worse. For the last few months, he's been fighting us at night when we get him ready for bed. This has been incredibly annoying, but I do believe it is functional: he is telling us he doesn't want to go to bed. Unfortunately, when Moe stays up too late, he gets really wild and out of control. We have tried doing calming activities or allowing him to "get his wiggles out" at this time, like taking a walk, playing outside or taking a bath but nothing seems to work. We don't know what to do, so for everyone's safety, and because Moe does so much better when he gets enough sleep, we put him to bed. An hour later, we go in and change his diaper, then he'll usually fall asleep for good somewhere between a half hour and two hours later. This is the routine every single day.

But over the past couple weeks, Moe's aggression has gone beyond bed time. I don't know why. Perhaps he's feeling sick as well, though he doesn't have the same symptoms I do. Perhaps he's picking up on other stresses in the house, as we enter into our round three of our IEP meetings. Perhaps he hasn't been sleeping well and is just tired. Or maybe he just thinks it is fun to hit me.

But I can tell you one thing: I hate this.

I hate always having to position myself between Moe and Jelly because I'm afraid he's going to hurt her. Twice recently, he has grabbed her hair simply because she was the closest thing available.

I hate being constantly on alert, worried that Moe is going to break something or hurt himself or run away. I dream about losing Moe. I see him running away and I can't get to him. (These have replaced the dreams I used to have about my brother. My dreams are not very hard to interpret.) I wake up most mornings with my teeth clenched.

I hate that I can't walk across a parking lot without Moe dropping to the ground ten times.

I hate that I have to spend hours and hours preparing for meetings with the school. That I have to negotiate for my son's education. That we have to hire a psychologist and an educational advocate just to convince the school district that Moe needs a new placement, even though it is clear that the class he has been in for two years isn't working for him.

I hate feeling guilty that I wish this weren't my life. I have so many things to be thankful for but they all seem overshadowed by these challenges. I want to be planning summer vacations and getting Moe ready for kindergarten. I want to be able to bring the kids to visit their grandparents. I want my kids to be able to play with each other. I want to hire a babysitter and go out to dinner and not have anxiety attacks about it.

Acceptance is hard when we're all struggling so much.

I want this sweet little boy who is curled up on the couch playing harmonica to stop making it seem like I'm lying about what a terror he is.

We are making changes. My mom is coming down this week (thanks mom!) to help while I have both kids at home. Jelly goes back to school next week, and Moe's summer program will start. This IEP stuff will be over one way or another. But as Jelly said to me the other day, "I don't want to be sad. I want to be happy."

June 7, 2012

Jelly Makes Her Mark

Today was Jelly's last day of her first year of preschool. I wanted to make a big deal of it, help her say good bye to her friends and teachers. But I also had to pick her up a little early, in order to make it to a small end of year celebration in Moe's class. As I walked to Jelly's classroom, I noticed a piece of paper sticking out of her folder, the words "Incident Report," peeking over the top.

I wasn't too concerned. I assumed she got hurt, but since they hadn't called during the day, I knew it couldn't have been too bad. I glanced at the page. "Jelly bit another child..." I had to read it again, thinking that couldn't be right; someone else must have bitten her. Nope. Jelly bit another kid in a skirmish over a toy.

Jelly has been very possessive of toys lately, but she has never once tried to bite someone. I was - still am - shocked. Of course I can't help but wonder if it is my fault. She's been battling control over everything lately. Recently Moe, in a moment of frustration at Home Depot, grabbed Jelly's hair, catching his nail on her nose and scratching her so she bled. Has she started imitating Moe's bad behaviors, even though of course we try to stop those? Is this yet another attention getting behavior?

I know this happens with preschoolers. I have been down this road before with Moe, but of course that was a much different situation. I even said to my mom, "she's supposed to be the easy one."

And that is when it hit me. Parenting--all parenting--is hard. Typical or special needs, all kids need guidance and care and time. All kids need to grow and mature and learn lessons. Little Jelly has been so far ahead in terms of language development that I often forget she is just barely three.

Frankly, we've all been off our game lately. We are sleep deprived and fighting colds and possibly seasonal allergies. There is a new and completely stressful drop-off and pick-up procedure at school that requires me to walk both kids across campus among the swarm of kids at the end of the day. I have been preoccupied (since February!) with Moe's IEP, getting him new services and figuring out this summer. And as the year wraps up, and things are still very much in limbo, I've been an emotional wreck, only made worse by Jelly's frequent 3 am wakings and Moe's exhausting relapse into aggressive and unregulated behavior (though also more attempts at some communication). Did I mention our master bathroom is gutted?

And tomorrow is Moe's last day of school.


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