Monday, June 29, 2009

Sacrificing the needs of the one for the needs of the Aspie

Sacrificing the needs of the one for the needs of the Aspie

Every Tuesday, the kids and I go to Chick Fil A for dinner and kids craft night. We have been doing this since Annelise was an infant. It is one of those predictable rituals that Ella finds comfort in. Every Tuesday, she knows we will go for dinner and she will get to see her best friend there.

Last Tuesday, Annelise was extremely tired. It was Vacation Bible School week, and she had been playing all afternoon and had not taken a nap. She does not usually, but VBS wears my kids out! Her fit started while we were driving to the restaurant. It continued as we came inside, and she stayed between the exterior and interior doors. She was quiet only briefly, and then realized that her milk carton had a picture of a BOY on it and she wanted one with a GIRL on it (such a thing does not exist, it was just something to yell about). Knowing Annelise like I do, I knew this tantrum was due to lack of sleep, and I also knew that it would continue whether we were at Chick Fil A or not. Since this particular location has an outside eating area, I took Annelise and Teddy out there, and Ella and Maddie stayed inside with their friends. Annelise kept on screaming and crying and carrying on. We finished our food, the big girls made sundaes at the craft table, and then we packed up to go home. Annelise was still screaming, and was even yelling at me as her eyes closed and she passed out from exhaustion.

Holy Cow.

I had a teachable moment with Ella after I got Annelise put to bed. Earlier that day, I had been stressed and tired and hungry, and had a meltdown. The kids were loud, Ella was complaining, it was SO HOT outside, and it was time for lunch. I was not in a good place for stress. After lunch, we were invited to Ella's best friend's house. We spent the whole afternoon there. She has a huge house, and all day long, the kids were outside, up stairs, anywhere other than around us. It was blissful. I was so rested and restored! And then Annelise's tantrum struck. I was able to remain calm, to not yell at her, to reassure her, to think clearly enough to get her screaming away from other restaurant guests.. AND, to realize that I would have two meltdowns going simultaneously, in public, if I tried to make us leave Chick Fil A on Tuesday night. I pointed out to Ella that because I had gotten time to myself, to rest and be restored, I was far better able to cope with Annelise's meltdown, even though it was loud and awful and lasted almost a full hour.

She understood that there was a big difference in the way I behaved at those two points, and said that she understood how having herself together when she was in a stressful situation made it go better. When she has left the chaos of the end of the school day only to enter the different chaos of our minivan, it is NOT a good time for her. When she has had some time to decompress in the schoolbus, walk to our house from the bus stop, and come into our home that is not as enclosed as a minivan, things go a lot better.

So, we both learned a few things that day!

Wednesday, June 17, 2009

Happy Half Birthday, you have Aspergers

Happy Half Birthday.. You have Aspergers..

Ella had a terrible, horrible, no good, very bad day. At least between lunch and when we walked in the door after school.

Ella has a bully at school named Makayla. Generally, the bully just shoots Ella dirty looks. Yesterday there were 4 different instances of her shooting Ella dirty looks. To top it off, Ella accidentally hit Makayla on the head with her umbrella yesterday, and Makayla erupted at her for it. She walked out of school feeling like she was going to cry, and got in the van, very stressed and unprepared to deal with the chaos of 3 small children.

She had three separate meltdowns just on the way home. She wanted to talk about her day, but Maddie was interrupting, Annelise was singing to herself, and Teddy was laughing and making noises at Annelise. It was more than Ella could take. She was hitting the chair in front of her, the window, her leg, yelling at us that we couldn't be quiet, we wouldn't listen, we didn't care about her, and we didn't love her. She was hurting herself with the strength of hitting things, and telling Maddie to stop looking at her "in that way", and ran into the house and into her room when we got home, yelling "why does everyone hate me?" as she went.

I got the other kids settled doing other things, playing and watching a video I think, and went to talk to Ella. I asked her to tell me about her day (which I've recounted). After that, we talked about her meltdowns. I asked her if she realized that they were caused by bottled up stress and emotions she had not talked about. She told me that she wishes that she were not too afraid to talk to her teacher about how she feels about her bully glaring at her, and she also wishes that her teacher would used the OT's recommendations for allowing her to do small things to help alleviate stress in school, especially allowing her to take tests and do writing assignments in a quiet place outside the classroom. I told her I would talk to her teacher, but with 2 weeks left, she will probably just need to deal with things.

I also asked if she realized that other people are affected by her meltdowns. I gave her the mental picture of being a tornado coming into our car after school, whirling and then tossing cars and roofs and tractors and glass at us as she melted down. We were doing what we usually do, but it was more than she could handle because of the bad day she'd had. She laughed at the imagery, and agreed that we were all doing what we usually do. I also told her that Maddie had been asking questions about her. About why she can get over a fit and Ella can't. About why Ella has meltdowns at the store or in the car, and she doesn't. About why Ella won't eat a lot of foods and wears the same clothes and shoes all the time. And that she is starting to be embarrassed when Ella has a meltdown, but doesn't know why Ella isn't embarassed.

I mentioned to her that after her father has been away on business for half the week and comes home, that we have noticed that he does not handle the usual noise and ruckus of our house well, either. That he tends to retreat into our bedroom with the laptop to stay out of the chaos. Everyone is doing what we always do, but it is too much when he is not used to it or in the right emotional state to deal with it.

I asked her if she had noticed that I had been acting different when she had a meltdown, too. I asked her what I did when she had a meltdown about picking out clothes the other morning. She said "You didn't walk away, you didn't yell and tell me to hurry, and you helped me make choices". I told her that was right. I asked her how I reacted today in the car while she was freaking out, she said "You didn't yell in my face, you didn't say you would ground me, and you tried to make everyone be quiet in the car". I agreed. I asked if that was different than I had acted before, and she said yes.

I told her that I had been doing a lot of reading about how her brain works. That she inherited the way her brain works from her father. I had been pointing out to her recently that she has inherited different things about her body from different people. Her eyes are blue like Grandma's, she has freckles like me, and she processes things and reacts to things the way she does because her brain is more like her father's. She has inherited her father's same ways of thinking, reacting to stress and to loud noise, his coordination for things like putting on socks.. his love of predictability and how it makes him makes feel safe. For instance, I like the novelty of choosing where to eat after church, and he stresses out if we don't always go to the same place because it brings him comfort and stability. I told her it took some real hard thinking for me to understand why her father felt that way because it didn't make any sense to me at all. That the sameness would be boring and limiting, because that's how my brain thinks.

I told her that the books I had been reading had helped me understand how to help her work through her meltdown, that it would not help if I demanded that the meltdown stop, and that she was having a meltdown because of her perspective on the situation. I needed to see her perspective, not just mine.

I asked her if she remembered the test she recently took with Dr. H., and that that she and her father, and many other people, have brains that process the same way hers does. I mentioned to her that she has a friend with Dyslexia. Her friend's mom is learning more about how to teach her because there is a name for her reading difference and processing of words and numbers. I told Ella that she has processing and reacting difference called Aspergers Syndrome, and that about 1 in 150 kids have Aspergers Syndrome or another one of the Autism Spectrum disorders. That she is in good company. I said that I knew there were kids at her school that have Aspergers or Autism also.

She said she didn't have any questions about it when I asked her, but that she was glad that I could read about it. I told her that it was helping me be a better mom and a better wife since her father has it too.

It was a lot to take in. I'm not surprised that she didn't have any questions. But I had never seen her feel so misunderstood and rejected, and she seemed more aware than usual that she was different from people around her, so it seemed like a good time to have this discussion.

She gave me a piece of good news too:

Late last week, Makayla played a trick on her and Ella felt embarrassed when Makayla and her friend laughed at her for her reaction. Ella talked to her friend Abigail, and the bully and her friend got angry because Ella told Abigail what they did. Abigail went to them and told them that they were mean to trick Ella. She told Ella that she would stick by her all through school. Abigail and another girl named Heather have been Ella's school friends this year, and I thought it was sweet to hear that Abigail stood up for her and promised to be her friend and help protect her from bullies. She said that it made her feel safe that Abigail talked to the bullies without her asking, too.

I have found several children's books about Asperger's and Autism, and wanted to get one, but wanted to tell Ella about her diagnosis first. I will review the one I decide on soon.

Thanks for listening. I am so glad to have you supporting me whether by responding to my posts or just taking the time to read and think about us!

Sunday, June 7, 2009

A day in the life... pass the valium, please!

A day in the life... pass the valium please

Some wandering reflections on today...

This morning was another battle about clothes. I'd say we have one of these every week at some point or another. She had an idea about what she was going to wear but had not laid it out. That is usually a really bad thing. The Doctor and I were out last night, babysitter didn't make sure to ask. Well, this morning I invited Maddie and Ella to come out to Starbucks with me for chai. Both girls seemed a little clingy after I had been gone a lot yesterday. Ella couldn't find anything that felt comfortable. I put up with the searching, the whining, the frustration, and the sobbing. I remained rational and supportive, and tried to give her options. Even looked in the dirty laundry for her. It got later and later. I got to a point where we needed to leave. I gave her a choice between two things, she refused. I told her we needed to leave, she ratcheted it up a notch and started throwing clothes and begging me to not leave, and generally hyperventilating and gagging on her sobs. I was trying to get cereal for Teddy and Annelise before we left, and my hands were shaking so bad from the ongoing auditory assault and my blood pressure was so high that I dropped and broke several things.

We finally got in the car. She and Maddie started in on each other with the poking and the tattling. Ella was upset and not stable, and always takes it out on some child. I thought I was going to go off the deep end. I grabbed out my Rescue Remedy (herbal supplement used for shock victims, actually), and put on some Steven Curtis Chapman. Loud.

Finally, some peace.

Ended up just going through the drive thru because it was SO much later than I expected. Got to church, everything was just ducky for Ella.

I was shell shocked for most of Sunday School class. I asked for prayer for The Doctor's business trip (each week 3 days, sometimes more), prayer for Ella's dental appt which never goes well because she freaks out on the anesthesia and then freaks out about the tingly sensation when the numbing meds wear off. A woman in my class mentioned that she wished she could help me, that I sounded overwhelmed. I told her to just pray for me. Another friend mentioned that she and her husband wished there was something they could do for me (she had been in the Sunday school class) and I asked for prayer for my ability to endure and cope, stretch and grow.

I took Ella on an errand to the store to get cucumber and onion around 3pm. She wanted to bring a book into the store. I was in a hurry, I told her no. We needed to move fast, she couldnt read while we walked, and I didn't want her to lose the book. She got back into the car, locked the doors, crossed her arms over her chest, and glared at me. I counted to 3 and she got out. We got in the store and she yelled at me about the book again, and ran into the bathroom. I got my produce and went after her. Had another discussion about how we needed to move quickly, and said I wanted to get garlic bread. In the garlic bread aisle, there happened to be flip flops for sale, and she asked if we could look at them. She was happy to find several that were comfortable and I told her she could have them.

Her love language is gifts. She told me that she knew I loved her because I bought her shoes. All was rosy.

I took the opportunity to tell her that I could feel her love when she said I did nice things for her, or cooked a good meal, that what speaks love to me is words of affirmation. She apologized for an incident on Valentine's Day that I dont remember, but I forgave her for it. One nice little teachable moment today.

I left for the choir party with repeated ritual "hug kiss nosy", she must have asked 6 times for it as I was trying to leave.

She did not call me while I was gone to ask me to come home. Yay! Good thing, because I was trying unsuccessfully to not have a breakdown. Had a good emotion filled talk with a wise and wonderful friend. Wish I hadn't cried around other people, but what are you going to do, you know? They were busy, and I didn't mind sharing with my friend. I barely could even enjoy being out of the house today at the choir party, just so overcome with the yelling and rage and trying to make sure I didn't flip out on her while she was melting down. Why is it so hard to act like an adult around her? I wonder if other moms of Autism spectrum kids have this issue.. I think many moms of teens do!

So, the end of the day, and I am still processing it all.

This whole brand new perspective on Ella with her official diagnosis, learning about Aspergers and how I have to bring my "A-game" every minute so I can avoid meltdowns just kicks my butt. I know with her sensory meltdowns, if I can see them coming, I can avoid them. If other 3 kids aren't needing me, we aren't in a hurry, etc. We still don't really have a sensory diet. I hear other moms talk about how their OT gives them a sensory diet. I have rough outline, but feel like I would need a weekend away to match up what OT recommends with activities in the Out of Sync Child books and create a sensory diet for her.

If I get bad sleep especially, I am really short tempered and snarky and don't really see her Aspergers, what I see is a defiant 9 yr old who can't act her age. For all the world, she seems like your average 9 year old, and there are days when that's all I see or want to see too. I get SO frustrated at her, and she is just being who she is. I really JUST read about uneven development in Aspergers/Autism and see now how that is what is really going on. Years of expecting much more out of her and and belitting her to act her age, now I know she has a different maturity level trajectory. But I dont know what to expect of her now. When her 6 yr old sister is in many ways becoming more mature, what do I do with that? This past year, they have both sorta been age 6. But Maddie is growing up and Ella, well, isn't. I am just learning about the whole concept and how even though Ella is 9, she has a high school level reading ability, but a K4 emotional maturity level. She's all over the place. This is an aspect I need a lot of direction with from other moms of kids on the spectrum. She just CANT modulate her emotional reactions. She wont take responsibility to get herself together to do well, and when I see her melting down and offer suggestions of things her OT has told her to do when she starts feeling stressed, she refuses. I don't really believe she is "old enough" to get it.

Also, Maddie is starting to understand there's a difference. She is embarrassed at Ella's sensory meltdowns, even if they are just at home or in the car, especially when they are in public. She is not understanding why we tolerate older sister's fits, etc. Last night I saw several kids books on autism spectrum.. for Aspergers and for Autism. BUT we haven't talked to Ella about having Aspergers. Dont feel like I can get a kids book on it to help Maddie till we tell her.. With her emotional maturity being pretty delayed, like 5 yr old level, it doesn't seem appropriate to talk about it with her. I don't like the whole label concept being put on my child for her to understand being "different", yet books I'm reading recommend talking about the differences in the way you think and process with your child. She loves therapy, doesn't mind having all this testing done, I don't think she thinks anything is amiss. Its a quandary.

Thanks for listening. I feel a lot better just getting all this out there.

Saturday, June 6, 2009

Teddy has discovered Thomas the Tank Engine

Teddy has discovered Thomas the Tank Engine

Somewhere near the age of 2, all of my children have discovered a favorite tv show or movie or video. IT becomes essential to their happiness, and in some cases borders on obsession. Generally, it wanes not long after they turn 2, but for about a 6 month period, it can get a little obnoxious :)

For Ella, it was Blue's Clues. She wanted to watch it first thing upon waking, she prayed for the characters when she said her prayers at night, she would have wanted an intravenous hookup of Blue's Clues if it had been available! She continued enjoying the show for several years, but her passion for it in that way was shortlived.

For Maddie, it was The Wiggles. We happened to have two televisions at the time, and it worked out well for her since she wanted ALL Wiggles ALL the time! We had Wiggles CDs in the car and played two songs over and over and over. Thankfully, she grew out of that rather quickly, and the Wiggles left the radar before she was 2 1/2.

For Annelise, it was and is The Little Einsteins!! She is their number one fan. Still. At 3 1/2! She has a rocket toy with all four team members, she has sheets and pillowcases and a bedspread, she has pajamas and shirts and a Leo doll and a conductor wand that lights up and plays music, she has several matching and bingo and card games.. bless her. She has a real thing for Leo, the redheaded leader of the Little Einsteins. I even made a Rocket cake for her third birthday! She likes Dora and she likes Diego, she can enjoy The Wonder Pets and The Backyardigans. But she LOVES those Little Einsteins.

It has just been in the last few weeks that Teddy has started bringing me a video case for Thomas and saying "beep beep!", and I bought a few Thomas books at Barnes and Noble this past week. It just brings him such joy. He is so excited, he gets a look of wonder and awe and glee on his face, just in the anticipation of reading the books or watching the shows. He made his first attempt at saying Thomas yesterday, and it came out "Tah-pas". He also likes Gordon. I goess I need to research about train sets in case this turns out to be His Big Thing and I can prepare for his birthday and Christmas. I love Craigslist, and sure hope we can get a train table and set for him that is more affordable than not. Annelise will have a great time with the train set too, she enjoys playing at train tables when we see them.

Have your children had a deep and abiding love for any movies or tv shows like this? I would love to hear about them!!!


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