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.

Compare and Contrast

After Moe was diagnosed with autism, I had to learn to stop comparing him to the other kids we knew. It took a while, but eventually I tossed out the milestones books, and replaced phrases like “should be able to” with phrases like “his own path” and “he’ll get there when he’s ready.”

An intensive one on one early intervention program necessitated leaving Moe’s regular play group, so I had fewer opportunities for direct comparison. Moe then moved directly into an autism preschool class, his peers all occupying the elite portion of the spectrum that allows them to be in this class. So most of the kids I see on a daily basis are also autistic.

I do still keep in touch with some people from the mom’s group. Many are friends, and I see their kids occasionally. Last week we all went out for sushi, and it was one of the first times since Moe’s diagnosis that I did not have to fight back tears as I heard the stories of what their kids were doing and how they were preparing for kindergarten.

It helps that I have a typical two year old as well and can finally relate. Actually, she’s what my husband and I call “hyper-typical.” She breezes past milestones with the greatest of ease. She plays with toys exactly as the toy manufacturers suggest. She doesn’t eat the crayons or play-doh. She speaks at the level of some three and four year olds and plays well with others.

I’ve learned to stop comparing Moe to his little sister as well.

I have recently started to become close with some of the moms from Moe’s class. I have many online connections, but these real life connections are building close friendships I haven’t felt since I stopped going to the play group. We chat as we pick up our kids from school, meet for coffee or breakfast, and exchange long emails when our kids have finally gone to bed for the night.

And once again, I find myself comparing. I am filled with such hope when I learn that one kid started talking at age five. Another finally just learned to use the toilet. These things are possible! I read the stories and books, but there’s nothing like hearing from someone you know to make you feel like it is possible.

I also compare the other way. One kid recently showed his mom the word “x-ray” on his iPad after he broke his arm. Another kid is finally speaking in sentences. The list of achievements goes on and on, and I am thrilled for them, but I also think “Moe can’t do that.” And I forget all about what Moe can do, and all that good stuff I learned about getting there when he’s ready.

But Moe has a way of reminding me. A few nights ago, as we were getting ready him ready for bed, Moe started saying “mom” over and over. At first I wasn’t sure. Was he just making random sounds? Was he saying he wanted “more” swinging? And then, as if he knew I doubted him, he looked and pointed right at me.

Moe will point or touch pictures or items to make choices but this was the first time in over two years I can remember him pointing like that. We were so thrilled with this that later that night we asked him to give a kiss to each of us in turn, first Mom, then Dad, then little sister Jelly, which he begrudgingly did, but did nonetheless.

And all of that good stuff that I learned came flooding back. And my heart was filled once again with “on this own path” and “when he’s ready” and lots and lots of hope.

And most importantly, with so much love for my perfect little boy.

Originally posted at Hopeful Parents, where I contribute on the 14th of every month.

Our First Target Meltdown

As you know, I have one typical child, as well as one with special needs. Watching Jelly, my typical two year old, gives us interesting insight into what a standard developmental path looks like. Although I do think this firsthand knowledge would have been helpful before Moe came along, because he is so delayed, they are sometimes quite similar, especially in terms of emotional development.

But they are also quite different. So many things come easy to Jelly, especially in terms of her motor development. When she wants her body to do something, for the most part she can just do it. Moe has to work really hard even to make a fist for a fist bump. He's only recently become fairly proficient at taking off his shoes, and can't put them on himself, where Jelly has been able to take shoes off and on for many months.

The biggest difference is their language development. Jelly has always been slightly ahead of the curve verbally, easily speaking in full sentences, and is working on concepts like when to use "ing" (as in Mommy is typing), and prepositions (in, on, behind, etc.). She practices these, speaking in sentences, and adjusting when they don't sound right to her. I'm not teaching her these things; she just picks them up. It's how most of us learn language, and it's fascinating.

You might think that this makes Jelly a much easier child to raise. Certainly her ability to say what she wants is very helpful. But Jelly is only two, so although she can talk, she isn't yet rational. Nor does she have patience. Very small issues or delays can turn into major tears, although she is getting better with concepts like "first, then" (as in, first we change your diaper then you can watch Dora).

I read often about the epic meltdowns of our autistic kids, often in sensory overloaded, and very public, places like Target. I've been lucky (excuse me while I go knock on some wood) that Moe is generally very well behaved when we're out and, as a sensory seeker, usually loves to be in bright, noisy environments. But I was still quite surprised that Jelly was the one who indoctrinated me into the Target meltdown club. My membership card should be arriving any day.

I was with Jeff and Moe, and the trigger was some perceived injustice around a hat that Moe had and Jelly didn't. She whined and complained for a while. When Moe was finally done with the hat, Jelly got to hold it for a bit. But I wasn't planning to buy it, so when we were done paying for the rest of our things, I gave the hat back. That was the last straw, and Jelly lost it. She was riding in the cart, otherwise I'm sure she would have thrown herself on the floor in perfect tantrum form.

It was also just about lunch time, and I'm sure that didn't help, but we couldn't go home because some people were coming to see it. So we decided a quick lunch was in order. We wanted fast, so we stopped at Carl's Jr. on the way home, thinking some fries and smoothies would help. Bad idea. This was the slowest fast food place ever. It took about 20 minutes from the time we ordered for them to bring our food. They weren't busy, nor was the food any better for taking that long. Moe and Jelly whined, cried, and/or screamed the entire time. It sucked.

The only saving grace was that Jeff was there. If I had gotten home and explained how Jelly had this horrible meltdown in Target, he would have sympathetically said "that's too bad" then moved on. At least he got to experience this particular hell right along with me. Lucky guy.

Communication is Hard

Once, when I was a little kid, my brother, who couldn't have been more than 3 or 4 at the time, needed some new pajamas. It was nighttime, and my dad had to go out and buy them in some kind of pajama emergency. I remember this being in our house but I can't imagine a case where the pajama supply would have been so low that he had to go buy new ones rather than wear ones he already had. I also seem to remember my dad was going to go the local drugstore, Sav-On, to get them, which also now makes no sense to me. I'm sure I have the facts

But the point of the story is that we asked my brother if wanted pajamas with feet or without feet. I remember he was very upset, but he said he wanted ones with feet. So my dad went out and bought pajamas with feet. He came back, and tried to put them on Billy, but was met with some serious unhappiness. It turns out that what he meant by "with feet" was that his own feet would show, rather than the footed pj's we thought he meant. It makes sense when you think about it.

Jelly is almost 21 months old, overachieving at everything including her early entrance into the terrible 2's. I'm not into foursquare, but if I were I would be the mayor of tantrum city. (If you don't know what foursquare is, it isn't important. You get the idea. She throws a fit about 100 times a day.) Jelly talks a lot, and is remarkable and making her needs known, but sometimes I know I'm talking right past her. She will often mix up things like off and on, telling me to turn off something when she really means that it is on, or whatever. It's a completely age-appropriate thing for her to do, but it often means I'm not getting her what she wants even though she thinks she's being very clear.

Watching Jelly's language develop has been a real eye opener for me and shown me not only how powerful communication is, but also how easily it can break down.

 

Hello?

Some of the things kids on the autism spectrum may have difficulty with are imitation and pretend play. Imitation is a key component to learning, and lack of pretend play is one of the early signals that a child isn't developing as he should. Moe does very little imitation and no pretend play.

But recently, Moe has started to do a little bit of imitation. Every so often, Moe will do something very typical, and I think "Aha! He's got it!" only to never see the behavior again. But I've seen this enough times now that I don't think it is a fluke. Specifically, he's been watching and imitating Jelly.

Jelly loves to talk on her toy phones and carries on conversations that always go like this: "Hello...hi...gibberishgibberishgibberish...bye." It's adorable and of course she gets a lot of attention for this cute show. So the other day, I tried to involve Moe and handed him one of our toy phones. He put it right to his ear and babbled a little. It lasted maybe a second, but he's now done it four or five times that I've seen. I don't think this is pretend play, but I do think he's imitating Jelly. If you have a spectrum kid you know this is hugely exciting!

Of course now I'm trying to get him to talk on the phone all the time. Yesterday, I took out one of the play phones that really looks like a toy, rather than some of the more realistic looking ones. I put it to my ear and said "hello?" Moe thought that was the funniest thing and got a serious case of the giggles. Every time I would stop, he would hand me back the phone, I'd do it again, and he'd crack up all over again. It was some really nice interactive play and so great to hear his joyful laugh.

These may not be major milestones, each of these steps get us closer to our goals. I'm learning to celebrate all of Moe's achievements, however big or small.

Excuse me!

Every day I am amazed at what Jelly can do. I have no idea if these things are “typical” or not. She’s hitting her developmental milestones for sure, but there are those are just checkpoints. So yes, Jelly points, but I didn’t realize that she would point at everything. And I didn’t realize that she would use that point meaningfully, as in “look at that!” or “I want that!”

From about the time she turned a year old, Jelly’s language and social skills seem to have just exploded. The fact that Moe never did so many of the things Jelly does makes it that much more fascinating when she does them. She imitates me, plays with toys the way I play with them, and does a lot of pretend play. She pretends to talk on the telephone, for example, and feeds her toys. I thought it would be a good idea to get this on tape, so at yesterday I got out my iPhone and started recording. Here is that recording:

Did you hear that at the end? It almost sounds like I added in a sound effect, but I swear I did not. That is my precious little flower belching like a frat boy. Lovely.

Here is take 2. This time we managed to keep some composure.

Isn't she sweet? You don't have to leave a comment telling me how cute she is, but if you feel like you must, I'll understand. Mwwah!