January 26, 2010

Heaven in a rocking chair

Last night, at about 10:30, my little Jelly Belly started crying. She does this occasionally. Sometimes, when she wakes from sleeping, the best thing to do is to leave her alone, safe in her crib, and let her fall back asleep. If we go to her, she wants to play, charming me and her dad with her snuggles and smiles. And then I let her play for a while, and she stays up way to long. And bad habits form. So usually, we let her cry for a few minutes before we decide whether or not we need to go in. I was pretty hard core about this with Moe, but with Jelly, Jeff has to be the enforcer.

But last night, I heard her. Jeff was doing dishes. (Stop to contemplate that for a moment. My husband was doing dishes. I'm a lucky girl.) But, because of the dishes, he didn't hear her. I thought maybe if I could comfort her before she got too upset, she would go to sleep quickly. So I went in.

And oh, it was worth it. My baby girl was so sleepy, and I sat with her in my arms in the rocking chair. She fell asleep on me, which she hasn't done since she was born and would only sleep that way. I wasn't so thrilled about it then. But last night it was bliss. She was heavy and calm, with just the slightest snore from the dry air. I couldn't get up. I wasn't afraid I would wake her, but I simply didn't want to be anywhere else.

January 25, 2010

A Picture is Worth a Thousand Meltdowns

Moe's sessions start at 8:00 in the morning, so between 7 and 8, I have to get myself up and dressed, give Jelly Belly her bottle, and get Moe up, dressed and fed. Even with Jeff's help, this often seems like an impossible task. But we've managed to get it done. Until recently.

Meals have become a challenge in our house. Moe is starting to have an attitude opinion about what he eats. He knows what he wants, but isn't usually able to tell us. He has been getting very, very frustrated. Moe knows how to say "more" and many other food words, but when he's tired, and hungry, and frustrated, he has trouble finding the words. This battle often ends with him, and sometimes both of us, in tears.

The best way to deal with this type of meltdown is to try to avoid it. Our program director suggested I make sure to give him the words he needs to use, then sit back and wait. For example, I'll say "do you want more waffles?" Then I'll wait. But it doesn't usually work. Maybe those aren't the words he needed because he wanted something else. And once the frustration and tears have set in, it is very hard to get past them. Sometimes I think I hear a word, but can't understand it because of the crying.

So I'm trying a new approach. Kids without speech are sometimes taught the Picture Exchange Communication System (PECS). We don't formally do PECS or use picture schedules with Moe yet. But during his circle time, the therapists have Moe choose the song he wants to sing by using picture cards, so I decided to build on this concept.

I made some laminated cards (http://www.goosiecards.com/) with pictures of Moe's favorite foods on them. Right now, I'm introducing the concept by showing him the cards with the picture of whatever he's eating at the time. I am also starting to present a choice, by showing him two cards and asking if he wants, say, "pizza" or "chicken nuggets." (Yes, that was the choice. Don't judge me.) Moe isn't very patient, so if he chooses pizza, but doesn't get it RIGHT THEN, he might lose it. So I'm finding this works best right now with things at the ready, like yogurt and applesauce. Moe has trouble making a choice, so it also works best with only two choices.

As time goes on, we can expand the time delay and the field from which Moe chooses. My goal is to start avoiding some major meltdowns during meals. And Moe should be happier too.

January 18, 2010

Ain't Misbehavin'

Another autism parent I follow on Twitter recently posted a link to a site called Autism Ink. (My Twitter friends also blog over at Both Hands and a Flashlight. If you haven't read them, you should.) The twitter comment was that we really need a positive autism logo. So of course I had to go check out what they were talking about. Go look at Autism Ink. Now, let's talk about this for a minute. Okay, I'll talk, you listen. (But feel free to talk back in the comments below.)

The idea of those t-shirts is that there should be a way to identify kids with autism. That way, when your autie kid has an uber-meltdown at Target, or isn't playing with the other kids at the park, people can have some level of understanding. Sounds nice, but I have so many problems with this.

First, all kids have meltdowns at Target. And every parent is afraid of being judged. Kids with autism may have bigger tantrums than other kids, and they may be older when they still have them. It might be less obvious what set them off. Knock on wood, Moe is generally well behaved when we're out, so I haven't (yet) experienced one of these horrible tantrums in public. When I do, I'm sure it would be nice to get a pass, a card I could just hold up and say "not my fault: autism kid." One of the designs on the autism ink site even says "ain't misbehavin." Yes, you are! Would pointing out that my kid has autism really make anything better? Maybe for me, for a second, but the tantrums would still happen and I would still need to deal with them and figure out how to avoid them in the future and give my child other ways to behave. Not that it's easy, but it is still necessary.

I also don't plan to ever let autism be an excuse for Moe to not do the things I know he can do. If I let autism excuse his bad behavior, won't I also be tempted to start using autism as an excuse for not pushing him to achieve? If you ever hear me say "he can't do that - he has autism," please slap me (or at least remind me of this post). I'm not saying I expect Moe to be able to do everything a typical 2 1/2 year old can do. But I will expect Moe to perform to the best of his abilities.

But here's what really gets me. The expression of the child in the picture just perpetuates the stereotype that people with autism are unfeeling. In fact, one of the images spells this out by labeling the same picture "sad," "happy," "anxious," "mad," etc. Believe me, I have seen this expression many times, blank stare, eyes averted. In fact, here it is:


But I've also seen this face:


And this one:


And this one:


I know Moe has feelings and that he gets angry, frustrated, sad, and happy. He is sometimes mellow and sometimes goofy. And though he may not always be able to express it in words, I know that he loves me. You know how I know? I see it in his eyes.

January 16, 2010

Monthly highlights

Once a month, we have a clinic with Moe's team. His entire team of therapists come over and we talk about what progress we've made this month and what new programs we're going to implement next month. A program is simply a new type activity or skill that we want to track. We remove ones Moe has "mastered" and add in the next set of things we want to focus on.

We start every clinic with our favorite stories or highlights from the month. I felt like we didn't make quite as much progress this month as in previous months. This month had two holiday weeks, so we didn't have nearly as much therapy time as usual. And, as I've written about before, the lack of structure during the holidays seemed to through Moe off a bit. But clinic is a good time to remind ourselves the progress we have made and regroup for the upcoming month.

Some of the highlights from this month included:

  • Moe has really taken an interest in art projects. He loves to color at his easel, but also at the new table in his room. He played with finger paints for the first time (something he refused to do before), as well as stamps.
  • After reading a book to Moe during speech therapy, he took the book and read it back, repeating some of the things we talked about in the book: "Bear is skating," "Bear painting," "Snowbear," etc.
  • Moe has been taking a greater interest in Jelly Belly, imitating some of her sounds and actions, like blowing raspberries during the "Mouth Song."
  • We've been working on word endings, and he's been getting much better at pronunciation. He'll often be "lazy" about how he says a word, but if we say it back, he'll imitate it. Jeff and I have heard him practicing his words on his own as well, like "horse," "fish," and "goat" with a real emphasis on the word endings.
  • I've also been working more on signing with Moe. Because he seems to be picking up speech, we haven't been focusing on signing too much. But since I've been signing with Jelly Belly and we've been watching Baby Signing Time videos, Moe seems to be picking up some. The other day, I gave Moe some scrambled eggs to eat and told him they might be hot. He tried one, and then signed "hot." Our SLP loved this because it showed great receptive language.
  • Moe is imitating a lot more speech, and not just single words. He says a lot of phrases as well.

Progress has been good. But we still have a long way to go. Things we're going to focus on this month are:

  • Receptive language: making sure language has a communicative function and that he is processing and understanding the language that he is hearing
  • Parallel play and "play with me" activities
  • "Show me" tasks, to teach joint interest
  • Responding to his name

This week we also had our first transition meeting with the school district. When Moe turns 3, his services will be provided by the school district rather than through Early Start. We now have a timeline for his next set of assessments and a date for Moe's first IEP meeting. Although we won't know until then what specific services they school district will provide, we do know what school he'll be attending and we have a general sense of the types of programs available. More on this to come.

January 10, 2010

The new chain letter

When I was a kid, chain letters were a big deal. You'd get a letter in the mail, requesting that you send the letter on to 8 or 10 other people. There was a promise at the end that you would be rewarded by receiving many, many letters back from all over the world. Good luck and fortune would surely be yours! But there was also a threat. Those who broke the chain would be punished with severly bad luck. I never send the letters along, but I did feel very uneasy about the whole thing.

Once email took the place of pen and paper, it wasn't long before the chain emails started coming. They were similar to the other kind, but usually less threatening. I found that most of the ones I received were about sending love or empowerment to other women or moms or friends. They were sweet in intention, though still annoying. And I couldn't help but feel the veiled threat inside: if you don't send this along, you're not a loving friend, mom, sister or whatever.

Now, it's Facebook status. One of your friends will post a status. "Today is X awareness day. Copy this as your status today to show you support X." The first time I saw it, I thought it was pretty clever. I think the first one I did was in support of gay marriage. I support gay marriage! So I dutifully copied and updated my status. But things are getting out of control. A couple of days ago, we were all asked to post my bra color to support breast cancer awareness. It was fun; I did it. But then yesterday, I saw three different messages. "Support for autism awareness," an issue near and dear to my heart, was followed by "post this if you know someone who has lost a baby." Okay, I hate autism, but I guess I hate dead babies even more. This morning it was cancer. What is a responsible facebooker to do? If I don't post does that mean I'm for autism/cancer/dead babies?

I certainly don't mean to make light of the issues at hand. To tell the truth, I think social media has proven to be an amazing way to spread information really quickly. I think we are only just scraping the surface of the potential power of social networks. One popular blog, Cake Wrecks, recently asked readers to donate just $1 to various charities that they featured. They raised real awareness and, perhaps more importantly, tens of thousands of dollars by using their network. This is powerful. This has potential.

For now, I think I'm done with my FB support posts. I support you and your cause, but frankly, I just can't keep up. Oh, and please send this link to 10 of your friends.

January 4, 2010

Everything I needed to know I learned on Desperate Housewives

I've been feeling like I should write something for the new year. I should have some resolutions, or at least hopes for the year to come. I usually like the idea of a clean start for the new year, however symbolic. But this year, I woke up on January 1 feeling much the same as I did the day before: facing many more days of much the same, with no real sense of where we're headed. Maybe it had to do with the fact that I stayed up way too late and the kids had the nerve to want breakfast at 7am. Let's just say I wasn't feeling a renewed spirit for the new year.

Thank god for Desperate Housewives, which has given me inspiration for the new year and basically written this post for me.

Do you watch it? I know you do. But in case you didn't realize it was back on after the holiday break and forgot to set your DVR, this week was the episode where we learn what happened after a small plane crased on Wisteria Lane. The epsiode was a collection of everyone's dreams about the future if they had or hadn't made certain choices. I generally don't like this "what if?" kind of show. But this time, one of the scenarios struck a nerve with me.

Lynette, who is pregnant with twins, learns that one of the babies might be born with a disability. She is rushed to surgery. But in Lynette's dream, she imagines what life with a child with a disabilty would be like. I cringed. So often these shows get this kind of thing so, so wrong. But I have to say, from my very limited point of view, they got things pretty right.

The dynamic between Lynette and her husband, Tom was very similar to ours. He's pretty calm; she's looks exhausted. He's optimistic, while she's worried. I tend to focus on what isn't happening yet, or what isn't going well. In one scene, during a difficult therapy session, Lynette frets "He should be sitting by now, or pulling up to stand or crawling." The therapist tells her that if she worries too much about "what he should be able to do by now or what other kids his age are doing, it is going to drive you crazy." This is true for all parents, but even more so for those of us with kids who are delayed. I am always looking at where Moe should be compared to his age group. And even though I already know he's dealyed, I feel bad when I see it in some particular situation. So, resolution #1: Moe is on his own path. Get over it. Celebrate his accomplishments and stop driving myself crazy worrying about a future I cannot predict.

Lynette breaks down and her conversation with Tom goes something like this. I think the writers at ABC must have microphones in my house, because I have had this conversation:

Lynette: I can't do this
Tom: Can't do what?
Lynette: This. Her. The therapy... And no one can even tell us if any of it is helping.
Tom: I think it is. And if it isn't? This is what there is to do. So we're doing it.
Lynette: Well, I can't
Tom: No. You don't want to. Neither do I. Neither does he.... But we don't have a choice.
Lynette: I feel like I'm being punished and I don't even know what I did.
Tom: You can't think that way.
Lynette: What else is there to think about? Hopes for the future? He might not even have one.
Tom: He's 14 months! Don't write him off yet. But you should start thinking about the future. Because no matter what, it's coming, and it is either going to make you less afraid or more. And you will know that you either did everything that you can for your son or you will be sorry.
Resolution #2: Stop feeling sorry for myself. There is no giving up so get over it. Know that we are doing everything we can for Moe. Do everything in my power to make sure that keeps happening as we have our first IEP this year. Do or do not. There is no try.

(Okay, that last one was from Yoda, but it just felt right.)

Fast forward and the son goes on to graduate from law school. In his graduation speech, he recognizes that his mom pushed him hard. She was scared, not of his disability but of "my potential and that she'd miss something that would help me reach it." Resolution #3: Stop being afraid of autism. Fear will not change the future. Do not give up hope that anything is possible. If we work hard, Moe will reach his greatest potential, which is all a mother can ask for. (And a phone call once in a while. And maybe some grandkids. Oy.)

Oh, and all of the above goes for you too, Jelly Belly.


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