Rigidity

It just breaks my heart that Morgan goes through such anxiety from day to day. It is so hard for us to manage, and so many times there is nothing we can do about it.


We took the girls to the local "Jump and Bounce" today. They always have a great time there. Because of the holiday it was packed today and I'm sure both girls were completely over stimulated by the time we left.

When we got home for lunch, Morgan refused to eat any of the mac and cheese I made. She then choose to go right to "quiet time"...but once she was there she got upset again and wanted to come back to the kitchen to eat. By that time we had let Piper sit in Morgan's usual spot, which completely threw Morgan into a tizzy. Can we say "rigid"?! We finally got Piper to switch back to her own spot/seat (I know, so not fair), but once they were seated in the appropriate places they both melted down. Morgan could not calm herself, so we decided to just put her upstairs again for quiet time. Piper calmed down pretty easily and ate a little...then went down for her nap. Morgan is still upset and crying in her room. At this point we just have to leave her there. There is no reasoning with a child with autism. Either she'll finally calm down or cry herself to sleep.

There are a lot of things we are doing with/for Morgan to help reduce her anxiety/rigidity and make her more flexible, but as with all therapies, they take time. We are barely at the beginning of our marathon.

Let me give you another example of what we see often. The other day Piper wanted to play with the cookies and cakes in our little kitchen play set. Morgan came to join us. We had a fun little game with the cookies, but when Piper went to get the cake all hell broke loose. When we usually play this game we sing Happy Birthday together and blow out the candles, then remove the candles from the cake and cut pieces for us to pretend to eat. This time Piper, being the flexible kid she is, decided to just bring the cake over to us, leaving behind the plate and wooden box we keep it in. Morgan became upset, so I grabbed the plate as I thought that would help. Apparently that wasn't good enough, we needed the box too. I kept telling her it was okay if the cake was on the plate without the box, but that did no good. With Morgan, we have to play the game exactly the same way each time, or she loses it.

There is no flexibility for our girl in her play, no creativity, no real "pretend." Same means "good" to Morgan. If she knows how it goes, she likes it. Anything new or different thrown in can cause total meltdown. Occasionally I throw something in that goes over OK, but I find I have to build it up before I actually do it, so she has some warning. This is good, but then the next time we play if I don't do the "new" thing the same way she freaks out. She locks in on anything she likes and can't venture outside it. When I play with her alone we can sometimes manage these issues so we can still have fun. When she plays with Piper it is more difficult because Piper has no clue what Morgans needs or what her issues are in this area. Unfortunately she is starting to learn this and either will accommodate her or just not want to play with her. Truthfully, it's not a lot of fun to play with Morgan. Piper is taking a jump forward in her creative play and I'm really enjoying it, but when Morgan wants to jump in...total buzzkill.

Last example of rigidity. This one is food related. I'm sure I've mentioned Morgan's beloved "dinosaur" sandwich. If not, it is a peanut butter and honey sandwich cut into two dinosaur shapes with a special bread cutter. She has a particular technique to eat this. She pulls the bread apart, eating the honey side first. While she eats the honey side, she holds the PB side in the other hand. I know...so odd. Lately we have had a few bread issues, such as one time the head just fell off the dinosuar and another time the bread was had some odd creases in it. Wouldn't most kids think that he head falling off was just hilarious?! When this happens Morgan demands it be fixed, which generally is impossible. Or, she asks for a new one. We accommodated this for a while, but lately have just told her if there's something wrong with it, don't eat it, and we're not making a new one. Depending on how hungry she is determines whether she'll have a meltdown or just not eat the offending sandwich.

This is exhausting.

Plans curtailed

So, our busy week proved to be "too" busy. I was afraid that might happen. Wednesday afternoon I drove up to Morgan's school to pick her up and her "main" teacher was waiting there with her. I thought "uh oh, this can't be good." The assistant teachers usually take the kids out to the buses/parents. I knew something was up.

It turns out that on Tuesday and Wednesday Morgan had some serious crying/screaming fits in class. She has never done this before at the district school. I was glad to hear that the teacher thought this was "out of character" for Morgan, but I fear this may start an unfavorable trend. Apparently the meltdowns are focused around their "circle time" where they sit and sing songs. Usually Morgan LOVES circle time and will sing us the songs they sing. In her Monday "typical" class she's always the first one on the rug.

Since we found out that there was going to be a "performance" of sorts we've been asking her what songs they are singing. Each time she says "no" and refuses to sing. So, now she's refusing to participate at school. So, yesterday we agreed to see what happens. I mentioned that we were having a busy week and we'd make sure she got a good night's sleep. Do you think she somehow felt the pressure of preparing for the event?! Could she be that intuitive?

So, we decided not to attend the Autism Society meeting last night. Morgan took a nice nap and had a great night's sleep last night (no wake-ups). She went off to school just fine. I went to pick Morgan up today and again, the teacher was there. No dice. She freaked out again today, maybe worse than the other two days. When it was time for circle time she threw herself on the floor and yelled "NO CIRCLE TIME!" Yikes. The teacher gave her choice of circle time or sit in a chair. She sat in the chair and cried, but was frequently given the option to return to circle time. She refused. Then when they took to other kids outside Morgan had to stay inside and do "something" related to circle time with the teacher. The teacher does not let the kids get away with not participating and make sure they participate in some way. She managed to get her to sit down and sing one song with her. On the way out to the playground Morgan kept trying to escape, saying "I need to use the potty." Apparently this is a way she's learned to avoid circle time this week. They'd take her to the potty and she wouldn't use it, it was just an excuse to get away. The teacher did not fall for that today and made her go out to the playground.

So, she basically encouraged us not to attend the event tonight. She said this for behavior reasons. She thought that if Morgan had a meltdown on stage we would have to remove her, and that would reinforce the bad behavior. I essentially agree with this, but it's still hard not to question it. We have no idea how Morgan would react to the situation, a new place she's never been, bright lights and a ton of kids singing at once. Probably not the best scenario anyway.

I'm sad about it. I LOVED this stuff as a kid (though I'm not sure if I would have participated at age 3.5?). I was really looking forward to watching her with her class and videotaping it. These are the times I feel really left out of the "neuro-typical" kid world. Why do those other parents get to watch their kid participate and I don't? I feel sad for Morgan too, though it probably really doesn't matter to her.

There was going to be cake afterwards too. She would have loved that.

I want to spill my milk!

I should have taken her seriously when she said this. She went and did just that.

I think Morgan was missing Gram and Grandpa. They came for a visit and left yesterday. Her routine is all changed up when they arrive and then it changes again when they leave. Its hard for our girl to adjust. I knew it was going to be tough when as soon as she came downstairs she started asking for "Morgan on TV." This is her way of saying she wants to watch home videos. I told her I wanted to watch some news first. Cue first tantrum.

Then I gave Piper some of her eggo... horror of horrors.

Oh and Piper wasn't a peach either. She refused to get in her booster seat and when I decided to put her in it, she mashed up all her cereal pieces in protest, then sprinkled them on the floor.

So, as Morgan was in one of the many tantrums of the morning she ran over to the table and declared "I want my cup! I want to spill it!" I had moved the cup away from it's usually spot since Piper was trying to climb on the table and grab it. I decided to test out the seriousness of her threat and gave her the cup. Sure enough. She turned it upside-down on the table and half of it spilled onto the floor. Time-out ensues. Oh, and she'd already had a time-out earlier for yelling at me because I wouldn't turn on her videos.

It's funny how most kids would think "I'll spill my milk" without actually saying it, so then it's a surprise to the parent when they do it on purpose. I guess until she figures that out I'll have fair warning on her plans for destruction.

This is really hard

Being a parent of a child with autism just stinks. I try to make the best of it...but overall it just blows. To give you an example of a few things I've had to deal with today..

Changes in routine
Morgan is very sensitive about changes in her daily routine. If it's something she likes to do, like David took her swimming last night, she's great. But if it's something she doesn't like...she's a mess. We were having a nice lunch today. I was letting her watch an episode of her favorite show, Yo Gabba Gabba and BAM! The power went out. We haven't experienced this before with Morgan. She freaked out and demanded that I turn the TV back on. I tried to explain to her what happened, but it made no difference. She got out of her chair and went to try to turn her show back on. She yelled at me like I was doing it on purpose. Then she calmed down a bit and decided she needed to use the bathroom. She then discovered she couldn't turn on the light...and refused to go in. It wasn't dark in there, but without the light it was scary for her. Then she went around the kitchen trying to turn on the lights, getting upset all over again. Then I had her sit on my lap and she seemed to be better, but then got upset when I tried to hold her, hug her or touch her. She wanted to lie on my chest, but touching her any other way was not OK. Again she started yelling/screaming. I put her in time out. She calmed for a bit then finally agreed to come back to the table and eat her lunch. While eating the power came back on and you'd think she'd won the lottery! Soon Yo Gabba Gabba was back on and all was good with the world.

Fixations
Morgan has always loved her books. For Christmas we got her a Tag Jr. that "reads" special books for her and plays music. She loves playing with it during her quiet time. For the third time in a week she has destroyed one of her Tag books. She likes to tear the images off the pages of the books (these are "board books" with sturdy pages). She also did this with a non-Tag book yesterday. I don't know if there is something soothing about tearing strips of paper off the pages. And, this is a kid who is in OT for issues with her fine motor skills. Are you kidding me?! She tears the paper in the tiny strips, on purpose! Several times I've offered her junk mail to tear apart and she refuses. What is it about tearing these books? Currently the Tag Jr. (we call him Tag Guy) has been taken away from her. I have no idea if she will learn anything from this.

Overall Cognitive Skills
Or lack thereof? Morgan has tested fine with her cognitive skills... though, much of the time I really don't know if she understands what I am saying to her or what I am trying to teach her. I feel like I'm talking to a wall.

Bonding
From birth I felt like I never fully bonded with Morgan. I am almost ashamed to say this. She refused to nurse (though my low supply issues may have played a part...though I had the same supply issue with Piper and she fought hard to nurse), and was never a cuddly, snugly baby. There are times I look at her and think "who are you?" It's almost like I miss her. I know she's in there, but I can't reach her.

I know today's just a rough one and other days we'll have great interaction and I feel like we're "connecting." But, lately David and I are honestly just having a really hard time with this. We love our girl so much. She can be so silly, sweet and funny at times, but other times is just so hard to communicate with her.

In conclusion, here's another link to this autism mom blog I love. This women has four kids, one with asperger syndrome, one with ADHD and maybe other issues, I can't remember, but she is so funny and just "gets it."

http://www.starkravingmadmommy.com/search?updated-max=2011-04-18T00%3A01%3A00-05%3A00&max-results=1

That Mom

The phrase "that Mom" runs in certain circles to describe situations when things may go haywire and your actions/or non-actions as a mother may be on display for public. For example, when your kid throws a huge tantrum on the playground or does something inappropriate at a birthday party. It's how you handle the situation that puts you in this place. I hope this make sense, but here's my "that Mom" situation from yesterday.

I took Morgan and Piper to the grocery store yesterday. We'd done our BIG shopping trip the day before, so I only needed a few things the other store didn't have. Morgan has taken to not wanting to ride in the cart, so she "helps" me shop and I let her put some of the items in the cart herself. All in all, the shopping itself went fine. It always gets sketchy at the end because they get impatient at the check-out line. The first meltdown happened when I failed to purchase Piper's balloon. I was feeling good because I decided to get the girls both a balloon as a treat and they very nicely both picked out two different Hello Kitty balloons. In the checkout line Piper kept giving me her balloon like she suddenly didn't want it. Every time I gave it back to her she pushed it back at me. I put it to the side and kept asking her if she wanted it, but she kept pushing it away. Of course, as I finished paying and pushed the cart away from the cashier she start crying for it and pointing to every balloon she saw saying "boon boon!" I went back and got it then hurried to the self checkout to purchase it. I thought we were in the clear.

When we got to the car a I put both girls in the car (but not in their car seats) so they could stretch their legs a little while I put the bags in the trunk. As I'm loading things in, screaming ensues from inside the car. I open the door and see that Piper is trying to play with the compartment between the seats that opens and closes. Morgan is not letting her do this, so she is yelling at her. Then I try to turn on some music and Morgan screams and turns it off. Piper screams some more. Then Morgan tells me she wants to go back in the store for a Dora book she saw (which she already has, but wouldn't take no for an answer). Both girls refuse to get in their car seats. I sit there for a while as they yell, watching people walk by and glance towards us. After much trying to "reason" and give them choices, with no luck, it finally becomes clear that there is no way to make them happy. I take a deep breath, physically push both of them in their seats, buckle them in and we leave...both of them still screaming.

I head out onto the busy street and then have to stop at a light...still screaming...I look back and realize that the balloons' ribbons are wrapped around both their legs and they are trying to free themselves. I put on my hazard lights and reach back to untangle them. Many cars are trying to get around us, but the screaming is so loud I barely notice. I finally get them free and am able to drive. About a block down the road the screaming finally stops. Sweet silence the next mile or so home. I'm not sure if anyone else would have handled it differently. I tried my best to calm them down and coax them into their seats, but they were not having it.

The one bonus I got from this is that the double mega-meltdown wiped them out. Piper took an AMAZING nap, Morgan did not demand to use the potty 4 times during quiet time and I got a nap myself!

Twelve Minutes

Twelve minutes. That's how much time I got on the arc trainer at the gym before the childcare team came and got me. I knew it was coming. Morgan was yelling so loud that all the Moms on the machines around me were commenting to each other "I wonder who's kid that is?!" After the person directly next to me gave me a perplexed look I said (kind of loudly on purpose) "Mine. She's mine." I think the other ladies we relieved that it wasn't their kid. Then one of the caregivers from the childcare showed up and off I went to collect my girls.

I expected this though. We hadn't been to the gym in a while and Morgan always takes a few days to get used to it again. She cried as I was leaving. I waited and she calmed a little. I made sure to say goodbye and that Mama will be back soon. They said she started crying again pretty soon after I headed upstairs. They put her in the same room as Piper to see if that helped, but then Piper started crying. Uh oh. Last straw.

Sigh. We'll try again tomorrow.

Potty Meltdown

So...I broke down and bought an actual potty chair. David did not want to do this as he hates the idea of having to clean out the cup they pee/poop in. I was over at a friend's house the other day for a play date and they have a really cute one for their little girl. I also noticed that the seat on the potty chair detached from the chair and attached very securely to the "big" potty. The potty seat we currently have is not very secure and every time I put Morgan on it I'm afraid she will slide off. I also thought maybe she'd be more comfortable on a chair her size.

I pulled it out of the box after Morgan's nap and she was instantly fascinated. No, she was not interested in peeing or pooping in it, she became obsessed with the music...yes, music. The little "pink princess" potty chair plays "royal" tunes when the child pees in it. I figured out that you can just touch the sensors and it will play the music. Big mistake. Morgan kept trying to get the music to play on her own and couldn't figure it out. She kept wanting me to do it and when I got tired of it and tried to put it away she had the most MAJOR meltdown yet. Then Piper started screaming. I really think both of them screamed for about 15 minutes. I finally put the potty chair in the bathroom and closed the door.

Morgan kept running around upstairs, crying, trying to find it. I put her on my lap and sangs some songs, still crying. Had her do the ABCs, worked for a minute, then she started bawling again. I finally got her calmed down, then went to feed Piper (to get her to stop screaming). There were random bursts of tears throughout the evening. They both conked out about 8:15 pm, exhausted. Morgan must have worked up an appetite too. She cleaned her plate of macaroni and cheese, peas and carrots, and asked for more...twice! In the midst of the tantrum she didn't get her usual snack. If that results in her actually eating her dinner, I might hesitate on the snacks more.

Before her bath I put Morgan on the potty chair to try it out. She did not want to sit on it. Looks like we've got a long way to go...

The "clingies" have arrived

We think we're finally into an official phase of separation anxiety. Morgan used to be such a champ in childcare situations. She'd go and play and it didn't seem to bother her to be away from us. Not anymore. My first experience was that Morgan didn't do so well last week at the gym childcare. I was about 3/4 through my workout when one of the caregivers came to get me. I chalked it up to the fact that we had not been there much in the last few months and she'd need time to adjust.

Sunday at church we dropped Morgan off in the nursery and were happy when we didn't get paged throughout the service. When it was over we headed over to pick her up. As soon as we got there we looked over the counter and saw our little one "escaping" the room on her hands and knees (while another baby was being carried out the door) with tears running down her face. Poor thing! It was pretty funny to see all the babies being handed over to the moms and dads and our Morgan was fighting her own way out of the room to find us.

This morning I decided to try the gym again. I had signed up for a special six-week long class that I was really looking forward to. We got there a little early. There were TONS of kids there! I brought her in the playroom and she seemed excited when she saw all the toys. I sat her down and she immediately started playing. I gave her a few kisses and said goodbye. She pretty much ignored me, so I thought she might be OK. Nope. About 30 minutes into the class the caregiver showed up to get me...again Luckily there weren't too many people in my class and the instructor said Morgan could come back with me. She occupied herself with some exercise balls and weights, but it was hard to concentrate on the class because I was keeping track of her.

And to top it off, tonight I spent some time downstairs making dinner while David and Morgan played upstairs. I came upstairs briefly to give David his dinner (a treat, we don't usually eat upstairs) and headed back down to get mine and Morgan completely melted down. When I got back upstairs I had to spend some time calming her down before I could eat my dinner.

Everything's a phase, they say. We'll see how long this one lasts. I've got my women's group at church tomorrow, so we'll see how she does there.