“I can’t get no satisfaction”

I think that my kids are all singing this tune LOUD and clear. That is what I hear when J is slamming doors, O is screaming and yelling because he can’t find his favorite yellow shorts and too tight short sleeved t-shirt that I put away, and Emil is throwing food, slapping and hitting. They are all so unsatisfied. Makes me feel so inadequate. I am a full-time mom/housewife. I clearly have issues trying to keep the house clean, kids fed, clothed, bathed. And, my kids are falling apart, each one mad at me in their own way. I try not to take things personally, but how do I separate my existence from some relative happiness level?

I’m losing my sense of humor about all of this and that makes me sad. I rewarded myself yesterday by buying myself a very fuzzy pair of light pink crocs. I am wearing them throughout this mad morning and every time I look at my feet I smile because I know that I did that for me. The rest of me is caught up in the chaos. Again I am being a reactive parent and I have no control. Need to regain my position at the helm. There is currently no skipper on this ship and we are listing as a result. We need a Gilligan.

On the bright side I re-read a previous post when we first received O’s diagnosis and I wrote how apprehensive I was to enter the autism community. I have been gingerly side stepping into this arena. I have met with a few friends of friends who have children with autism who have been in this for years. What a truly amazing, resilient, real group of people. I feel hopeful again. The way that these people have embraced autism into their lives and made the best out of what could be a negative situation. All of these amazing parents who have had to readjust their expectations for their families again and again, but rolled with the punches and can laugh, from the bottom of their souls, belly laugh about life and how fun, how silly, how serious, how treacherous, how sad, and unpredictable it all is. I have also been able to hear more about families who are close to us and who have had struggles with their kids, who are not autistic, but indeed have tremendous challenges. There are some seriously brave parents out there that I have learned a great deal from in the past two months. I am sincerely grateful for you, for opening your hearts and your lives to us. We are richer for it in so many amazing ways.

Speaking of getting richer, all of the doctors, hospitals, therapists, schools, childcare centers, labs, radiologists, and now dentists, in our lives are all benefitting monetarily from our bout of unfortunate luck these past few months.  I spent half of our trip to the dentist yesterday worrying if my son was going to have a front tooth and the other half worrying about how much this was going to cost. If this had happened a year ago when we didn’t have dental insurance because we were self employed, I can’t even imagine how much this would have set us back. Fortunately, it seems as if we have far better dental insurance than I had anticipated. Thank goodness.

J’s school has a 3 day break for conferences this week so he and his buddies took in a round of airsoft guns. Not coming from a family of any boys, the rough housing, gun toting thing isn’t something that comes to me easily. I am working on trying to give them space to be boys. They are inherently different and have different outlets than girls do, I think. I have been lenient with the airsoft gun thing as all of his friends are playing, they are great kids, and I know that some of their friends’ parents are as reluctant and as protective as I am. I told him that I wanted he and his friends to discuss the rules for their game before they started.  Sure not still if that happened or not. What I do know is that I get a call during the one hour that I decided to turn my phone off in recent history to the effect of ‘J has chipped his tooth playing airsoft guns’. Okay, that can’t be good so I went over there right away to find that not only did he ‘chip’ his tooth, but more than half of it was shattered, he had a fat lip, and a bruised tongue. It caught me off guard because I didn’t know who to call.  The dentist? The doctor?  When I walked into the room where he and his buddies were you could have heard a pin drop. I think that they think that I was going to get mad. I think that they were relieved to hear me say that it was an accident and accidents happen. After thinking about this for a day, I would say that still rings true but perhaps we need to establish some guidelines for airsoft gun wars. Like, no shooting at your friends faces at close range might be a start;) Not really sure of what the details surrounding the shattering of the tooth are, but the fact that no one will really say tells me that they all feel a little bit guilty. Which is good. They are also very loyal to their friends which really shows integrity. I love these boys but sometimes what I would consider common sense reasoning doesn’t come to easily to them.  To me, when you take a shower, you don’t repeatedly leave your wet towel on the floor of your room, but hey, what do I know? The closer that they get to the magical age of 13, the more I am baffled. Can’t imagine what ages 14, 15, 16, and on are going to bring.

So, after getting home from the dentist, I went to pick up O. His teacher told me that he had been complaining that the inside of his mouth hurt him. The smile that I had on my face with anticipation to see my little O was immediately replaced with an, ‘Oh, God, what now?’ look. I said, ‘lets see if he has any bumps on his hands’…sure enough, bumps! Victim number 2 to come down with Hand Foot Mouth Disease this week. As my sister, M, told me on the phone this morning, it’s almost a new month.  That’s right, and I am looking very forward to November. I am not digging the chaos that has infiltrated our lives. I seem to do okay with it and manage to not let it defeat me, but come on, enough is enough.

I am humbled and terribly saddened by the story of a young 12 year old whose blog I was following.  A friend of mine told me of what a lovely blog this very courageous mom, who was a friend of hers, was keeping of her son’s battle with cancer. I became a silent follower and said prayer after prayer for this boy and his family. It caught me tremendously off guard when he passed away. I guess that because his mother’s constant hope and raw determination and incredible writing, I didn’t understand just how ill this sweet, well-loved boy had fallen. It makes me step back and be a little bit gentler, a lot more gracious, and hug my children a little more tighter than I did before.

Over the course of the day writing this blog entry, I have gone from completely overwhelmed with every child acting out in a very ‘them-like’ way, to trying to gain some perspective.  I established early on in the day that I would not be changing out of my pajamas nor would I be doing anything fruitful, nor would I be leaving this house.  I have accomplished nothing, had an 18 month old who was inconsolable, pulling on my pant leg to be picked up, put down, not knowing what he wants, most of the day. And, most importantly, I am now caught up on Top Chef. Jennifer definitely is crumbling under pressure and needs to reengage! Pull it together, Jennifer.

I forgot to mention that on Tuesday my mom offered to get O on his bus as I volunteer to do lunch service at Villa every other Tuesday (mostly to see who these girls are who are entering my son’s life…). Not only did she try and see him off on the bus, but she took the bus with him, met Sandy the bus driver, attended the entire day at View Ridge Elementary, and then continue to ride the bus home.  WOW, what a grandma.  What a truly blessed boy O is to have such a grandma. I think that it was a great opportunity for him to share his school world with her.  Lucky, Lucky, Lucky!

Well, the title says it all. I had the most lovely pear martini on Friday at Diane’s house at the 7th grade Villa parents party. I’d like to indulge again. I feel like I deserve it today. Heck, I’d take a 40 oz Mickeys at this point…just kidding…what are those anyways?  I’ve only heard about them in rap songs. Snoop Doggy Dog also sings about Gin and Juice…

I am in need of a break. We all are. E sprouted some lovely rash that turned out to be hand foot mouth disease. How disgusting does that sound! It is a bunch of bumps literally on his hands, feet, and in his mouth…oh, yeah, and his diaper area, but they don’t seem to mention that in the title.  Hand Foot Mouth Crotch Disease doesn’t sound as good. Sounds kinda crass actually. He spent probably a total of 6 hours screaming today.  Yelling, hitting, and screaming. He is just plain ticked off that he wasn’t feeling so groovy all day. He actually slapped my face once and clocked me in the head with a metal train. Parenting gives you some thick skin 😉

Monday  means that O is home in the morning but then Sandy the bus driver comes to pick him up at 12:30 to go to View Ridge Elementary for his afternoon Pre-K program. Our friend, O, would not get on the bus today. Strapped him in while he was kicking and screaming and waved good-bye, but apparently he got out and Sandy had to stop the bus, call district bus security and forcefully strap him back in. Good Lord, please tell me that they will let him continue to ride the SSD buses. I can’t imagine if we were banned from them. That would really suck a lot. I got a stern warning that O cannot do that again. I don’t know exactly what they mean by not do ‘that’ again. What? Scream? Get out of his seatbelt? I was so busy feeling guilty for my child’s behavior that I forgot to ask Sandy what that meant.  Oh, well, we’ll see tomorrow I guess. Darn, she’s a really nice lady and I feel horribly! Of course, when I picked him up off the bus he was all smiles and told Sandy, ‘I’m so sorry, Sandy, I didn’t mean to. It won’t happen again. It’s a deal’.  Does he really know what he is saying? I think that he has a sense of empathy at times but at other times I wonder.

To continue upon yesterday’s topic of being hopeful….

 

Hopeful. That is how I felt when O was first diagnosed in August. As I’ve been through the diagnosis process, through the Autism Speaks Walk, through the Seattle Childrens Astar Autism Auction, through the Tessera Conference ‘Restoring Hope’, and now through the appointment with the family social worker from Children’s Autism Center…I feel way less hope that I felt a mere two months ago. This is not what I expected. I wanted to feel more hope. Instead I feel desperate for any hope that anyone will offer. Hopeless. What snake oil should I purchase to make my son better?! I have heard parents, social workers, and top notch doctors say that ‘there is no cure for autism’ ‘there is little you can do, but you can try’ ‘I’m so sorry…’ How is one supposed to feel hearing those words about their child’s prognosis? But, I look at my little guy and I need to feel hope. His brothers need me to be the hopeful one, so does my husband. That is my job. Where am I supposed to draw hope from? Heading into this I felt like there were going to be so many options, so many directions to finding the right cure for my son. I’m not hearing that. I’m hearing the opposite. Do I just manufacture hope so that my kids feel hopeful or is that deceiving them and me? Maybe a daily trip to Mr. Roger’s Neighborhood of Makebelieve isn’t such a bad thing…

 

I found it ironic that the name of the conference the other day was called ‘Restoring Hope’ because that is not how I felt when I left. It seems like a large portion of the audience were that of parents of lower functioning autistic children. People who had been worn down more and had less hope. Parents who used to have a sparkle in their eye, but that has since faded because they have tried every snake oil out there. They have tried every therapy, every diet, every medicine, but their child still cannot communicate with them. I don’t know how they still remain hopeful and happy, but there were! Being new to this, perhaps this wasn’t the right time for me try and understand this side of autism. There were fewer people that were there that represented the parent group of higher functioning autistic children. We all have similar issues, yet very different ones as well.

 

The absolutely cutest thing happened the other day.  My mom greeted O as he was getting off of the school bus from View Ridge.  Apparently Oliver said, ‘Grandma, I’d like to introduce you to my new bus driver, Sandy’. Granted, the words that he used were straight out of Finding Nemo, but nonetheless, this gives me hope. The fact that a year ago, this little guy couldn’t speak more than a couple of words and spaced out more than half of his awake hours, spending them in a distant land that we weren’t able to access, for this little guy to make such a wonderful statement, I’m DAMN proud! He borrowed the words, the tone, the inflection, but he used it entirely in context. He is smart enough to utilize this kind of speech to communicate his point. He will make it. I know he will. I believe! Hopeful again…

Mom and I went to a fantastic conference on autism on Thursday called ‘Restoring Hope’. The first speaker was Dr. Bryan King. He was very articulate in his description of where the definition of autism was derived, where it is now, and where it is going in the future. Being new to this all, I so appreciated this even though it may have seemed like taking a few steps backwards for those of us that have been here for years. There were 4 different tracks of speakers…Mom and I separated and covered the ones that were most interesting. Somehow the speakers that she went to were more engaging and had more practical information.

For the first, I chose ‘Effective Behavioral Interventions’. I was hoping to walk away with some concrete information on how to effectively intervene when I am encountering a behavioral meltdown. It was more of a history of how the ideas have changed over the years. Some good information, but the photograph of a young boy getting a lobotomy with what looked like chopsticks is now ever indelible in my mind. WTH?!! So, was I supposed to feel grateful that we weren’t dealing with this 30 years ago?

The next class I chose was a parent panel. There were some truly inspiring parents that shared their stories with us. Their tremendous courage emitted an enormous amount of spirit, love, and bravery. It gave me a different perspective on the difficult choices that they have all had to make on whether to keep their autistic children at home or commit them to a group home. It was heartbreaking and my heart hurt for these parents. I feel fortunate that we aren’t in that situation and won’t be. It wasn’t practical information but I definitely gained some knowledge of the other end of the spectrum and also of the trials that are put upon us. These families were blessed by these children. These moms have literally been through hell yet still possess a beautiful peacefulness about them. They aren’t afraid to cry in front of a crowded room of people. I will hold them in my heart for a long, long time.

The third class was ‘Assessing and Changing Challenging Behaviors’. Now this dude was seriously demented. He was laughing at his own crass jokes. Apparently he is a doctor at an institution. The manner in which he spoke of his ‘clients’ was baffling. There were a great deal of parents of fairly low functioning, non-verbal autistic children in attendance. I can imagine that they were either completely appalled with this character or this has become their world and are immune to it. He told us of ridiculous tactics that they would use to reduce the amount of hours that the kids had to be restrained per day. WTH? That is so what I didn’t need to hear! Though, looking back on his powerpoint slides, I see that the objectives that he laid out made sense. Proactive approaches to behavior are better than reactive ones; avoid using punishment. The avoidance of using punishment is an interesting notion. One I hadn’t actively considered but I seemingly am finding that punishing O is completely ineffective. Something that I would never, ever have considered before I stepped into these shoes. So, Dr. Crazy states that:

1. punishment has no teaching component   2. punishment models the use of coercion  3. punishment creates anger and provokes aggression  4. punishment is often reinforcing to the person using it  5. people adapt to a punisher, requiring an increase in intensity over time  6. punishment is a reactive strategy. What to do instead? Crisis management, followed by instruction in appropriate behavior, re-creating the scene.

After I get the yuckiness of his impression upon me out of my head, I will be able to think more clearly about his message. Unfortunately I’m still stuck on that hideous laugh he emitted. That should be omitted indefinitely. The last thing that people in the position of having to admit their child into a group home should have to endure is THAT stupid chuckle. Have I exhausted my point yet?

I saved the best for last. Dr. Gary Stobbe. Does this man have a facebook fan club yet? If not, I might have to be in charge of such an honorable task. The fact that he is extremely charismatic doesn’t hurt. The fact that he is a trained neurologist means that he brings a great deal more depth to the conversation. The fact that he was talking about biomedical approaches to autism made my heart flutter. He seems to have a broader understanding of this spectrum. There is a quality to his speaking that says, ‘parent, I’m not giving up, neither should you’. He emits hope. Yet, just to be clear, he did say that there is no cure to autism. I still need to believe. I’m going to pretend that he said that there is a cure and that everything is going to be okay. Oooohhh…I feel better already, and hopeful. I need live in the make believe for a little bit. Like when the trolley to The Neighborhood of Makebelieve showed up on Mr. Roger’s Neighborhood. That soothing sound of the trolley that came to whisk you away after you were ever so gently told of whatever mishap in the world by a caring, loving man in a cardigan with indoor sneakers and a soft, gentle voice. Once you arrived in the Neighborhood of Makebelieve, everything was always so hopeful. All of the lessons learned were and beautiful and inspiring. Like you were wearing rose colored, cloudy glasses. The real world didn’t seem as bad any longer. You were then ready to go back. It was always good for a few minutes to escape to that world. I feel like I need that escape right now. Just for a day. Just long enough to gain some perspective.

 

Okay, so the title sums up our Old Navy experience the other day.  I was so excited to take our dear O shopping for some new clothes. Since he is obsessed with wearing all the same color (red shorts + red shirts, blue shorts + blue shirts, etc…). We have to keep this in mind when shopping.  We can’t just shop. We have to shop for ‘outfits’. I learned with Julian that when you involve them in the shopping experience that they tend to wear the items far more than if you just buy them and stick them in their closets. So, off to Old Navy in Alderwood. Yet another place that we are barred from. Yikes, this list is growing! So we walk in the store and he just totally freaks out.  The whole kicking, screaming, crying, laying on the floor, full on tantrum. I used every tool in my parenting tool box to try and divert him to shopping for his clothes with me. To no avail. He then came over and I thought that he might be opening up to the idea, but no, he came over to punch me in the stomach. Another fine parenting moment! Of course, there were a multitude of over-knowledged parents around with their very well behaved children in their shopping cart who weren’t making a single peep (FYI…who ARE you?! I have had 3 kids and none of them are like that, at all.  What am I doing wrong?!! Maybe I need to do a work study at your house for a day to learn some lessons!) What I didn’t appreciate from the surrounding parent group was ‘the look’. The look that said, ‘Good grief woman, what are you doing to your kid to get him to behave like THAT?! You SUCK as a parent!’ Of course, the amount of frustration that I was enduring during that 10 minute stretch most likely amounted in a look that said, ‘yeah…come on…just make THAT comment, lady!  Bring it on!’  What kind of crazy person have I become that I exude such emotions! I wonder about this myself, so don’t worry, I’ve got it covered in the worry category. After about 10 minutes of pure parenting bliss, I managed to coax him to come with me after I noticed a bubble gum like looking machine that sold bouncy balls for 25 cents. Sweet!! That’s a small price to pay for a little peace and a chance at some compliance. Unfortunately it only stuck for a couple of minutes. But, at least I could get him to the back of the store and wasn’t in fear of him running into the parking lot or knocking down the mannequin display (like we did at The University Bookstore last week…oops). I was on a quick search for outfits.  Just shove them in the blue oversized Old Navy shopping bag. Yellow is the color of choice right now and I found a long sleeved yellow shirt, but no pants. Darn! I got a green outfit, jeans in two different shades and styles, a blue outfit, and a yellow shirt. Seriously though, what company would make yellow pants.  I can’t imagine that they’d be a big seller except perhaps for the OCD/ASD crowd that we are now apparent a distinct part of. And, I’m kinda freaking out about what an outfit that included wearing jeans might be in terms of matching it with a shirt.  What color? What texture? Gosh, should I start looking for matching denim shirts? Where would I buy those?

We came home after a little more ado to get ready for the bus to pick O up and take him to his afternoon pre-k program at View Ridge Elementary. After a lot of bribing and dealings, he was outside, waiting for the yellow bus with me. After the 30 minute wait, he was done. Took off his boots, coat, backpack. He was yelling that he didn’t want t0 go to school and that he hated school. I thought about trying to get him into the car and taking him to school. I thought of the physical and emotional toll on both of us, first to get into the car, and second to get from the car to the classroom. I decided that I couldn’t do it. It was too much. Ever since Saturday, the emotions have overrun me. It’s good though because I had been wondering when the flood gate was going to open. If you see me walking down the street crying, just ignore me. It’s where I’m at right now and I can’t help it. I could try and fight it, but can’t seem to want to because it’s me grieving. I need to do this.

I chewed out the SPS transportation guy on the phone. I feel bad. How could he have known that O is O and couldn’t deal with 30 minute wait for the bus that never came. I should call and apologize. Maybe I’ll make him a homemade card with glitter, cutouts and embossed stamps to say that I’m sorry.  Is it okay if I just think this thought of an apology and call it good? Please. When I got off the phone I was so mad. I wasn’t mad AT O, I was just mad that I couldn’t make it happen or just plain that it didn’t happen. About 10 minutes later, O said, ‘I’m so sorry, Mom’. I know that he truly is sorry so I know that he has remorse but at that very second I couldn’t receive the apology. I was done, too. I didn’t say anything. I had to go to a volunteer training at Julian’s school. GAWD, that was so not the brain space that I was in at the moment. It was painful. I got there, tried to adjust, but just couldn’t. A lady sitting in front of me was going on and on about how she just can’t get over how now that she is working out so much that she has to get an entire new wardrobe. The look on my face at that moment probably said, ‘Uh…seriously?!’ OMG!! But, then as my mind went down that path, I caught myself and reminded myself of our family virtue of the week…Compassion. Yes, I so don’t appreciate it when people judge me, so how could I judge her? Who am I to judge anyone for that matter? Who knows what her reality is? I do know that the grass is always greener. Her reality could be so horrible that she has focus on superficial matters like the terror of replacing her wardrobe due to her huge jump from a size 0 to a size 2 wardrobe. I’m being sarcastic and rude, but really, who knows what her reality is. I certainly don’t. I’m learning in our week of focus on Compassion that it is also important to be compassionate with yourself. Sometimes the constant self-criticism results in being in a place that lacks a significant amount of compassion. Self-compassion. Just created a new word!

After all of this talk of the difficult Monday that was, Tuesday was okay. O managed to go to school. Granted I had to accompany him on the bus, hand him off screaming to his teacher. But, he came home on the bus and was really proud of how he took the bus home. He was proud that he rode the yellow school bus with the bus driver named Sandy. He carried on a beautiful conversation about it. Told everyone he interacted with. So proud and so darned sweet. Love that little guy!

Then on Wednesday, I had a blissful O moment when I went to take his lunch to school that he had forgotten. I didn’t know how he would receive me because it wasn’t in the exact spelled out schedule of the day. But, when that little guy saw me his entire face lit up and he shouted so happily, ‘Mom! You brought me my lunch! That is so nice of you!’ He gave me a huge hug and I was speechless. My beautiful little O. I need to remember that exact look on his sweet face when I am contending with the O that I don’t yet understand…the one that falls apart in Old Navy for no reason. The O that throws an Elmo toy at the TV and shatters it for no predictable reason. Remind me of that sweet face in those more difficult moment, please.

What a beautiful evening at the Seattle Children’s ASTAR auction last night. Lets write a haiku about it:

beautiful dresses

laughter, hugs, talking with friends

crazy auctioneer

I ran into a group of ladies from Julian’s previous school. I knew that one of them, J, was on the Guild with my friend, but didn’t know that her son was also autistic. That caught me off guard. All of a sudden when I learned that, it’s like we saw each other…the struggles, the pain, the joys, the fear, all exchanged in a single look. I loved that a bunch of her friends were there to support her. I know that I so valued that my friends that were with me. J talked to me about how her son was also at View Ridge in their Developmental Preschool program but then left to go to the EEU. She told me how wonderful it is there and how much progress her son has made since joining. I had really resisted that path until hearing her strong convictions. I really had thought that O is so high functioning that he doesn’t need it. But, honestly, why not get him ALL of the help that he needs now? I will look into it this week.

The night was so beautiful, with beautiful people, lovely dresses to admire, handsome men decked out in fancy suits. Many, wonderful auction items. We actually ended up winning a great Husky Baseball basket full of great Purple and Gold goodies!  All of the kids were thrilled. J got a couple of signed baseballs and a bat, O got a hat and a pair of cute Husky boots.  I guess that E gets to lug around the fun basket that they all came in! Woo Hoo!

When one of the speakers, Kim, who is a mom of an autistic boy, named T, started talking about her journey with her son having autism, I lost it. As I had feared, I became that hysterically crying woman in the fancy dress. Great! But, as I glanced out, I could tell who the other moms of autistic children were because they were crying as hard as I was. They could feel Kim’s pain as they have felt a pain similar in similar situations…many many times. I could totally relate to her. And, quite honestly, until I heard her story, I thought that I was the only one who was dealing with these situations. I didn’t realize that this is the pain in autism. The fear of not knowing what autism really is, what it means for your child’s, for your family’s future. I feel like I’m in better company now and less lonely in this endeavor. I am understanding that there are a lot of us who are wearing similar shoes right now. Not sure which pair match our outfits…should we wear flats or pumps…shiny or dull…bright or subdued…or just plain for comfort?

Today I spent most of the day in a daze from yesterday. I can’t remember my eyes being so puffy. I haven’t cried so hard since the day we received O’s diagnosis. When we got home last night I just had to hold O. I went into his bed and just held his hand and stared at his beautiful little face. He is adorable. I love that little guy. I am truly happy to have been chosen to be his mom. I don’t know how the world works like that but I feel like we both chose each other.

In the past few days, I’ve spent some time re-reading some responses from friends and family members. As I have been struggling with E’s screaming and extra feisty behavior as well as the stage of pre-teenism that J is at, I often feel like I’m doing this all wrong. I considered finding a parenting mentor for this new role of being a parent of a child with autism. I thought about why. What is a mentor? I looked it up in the dictionary…mentor: a wise and trusted counselor or teacher; an influential senior sponsor or supporter. What qualities would I seek in a mentor? I then realized that I find mentorship in all of the relationships that I have.

After finally connecting on the phone with my dear friend, J, we spoke for nearly an hour. She has such perspective and I gained so much knowledge and a better understanding of what is important right now for me parenting a teen and being a parent in general. Of course, you wouldn’t know that if you saw me slamming doors and yelling at my family about 30 minutes ago! Nonetheless, the biggest take away I got from her was that it is okay to make parenting mistakes. The ability to say, ‘I reacted incorrectly in that situation, what you did is still not okay, but if I were given the opportunity to start over, here is what I would have said…’ Admitting fault is so disarming. I wish that my children would learn this. I wish that I had learned this lesson when I was younger. It’s time to start role modeling some better behaviors. After this afternoon, I feel like the only thing that I am teaching my kids is that when you get really pissed off it’s okay to yell and scream, stomp around, and slam doors. Probably not my finest parenting moment. Time to turn it around!!

There is a fabulous parenting mentor/counselor here in Seattle who gives the most wonderful, empowering free library lectures about parenting teens. I went to see her talk once, and Peter the next week. Her name is Lori Gradinger. Her website is here:

http://www.courageouscommunication.net/

I need to go again and regain that perspective that I had last spring when I first attended her seminar.  I felt closer to finding out my strengths of a parent of a teen then than I do now.

Tonight is the Seattle Children’s Autism Center/ASTAR fundraiser. I’m so thrilled to go. After these last few days, I feel a bit fragile and I hope that I don’t start to cry and make a big spectacle. Why do I have a vision of this happening when I’m all dressed up at a fancy, lovely event with some dear friends? Where else could it happen! Thanks to D & B for their extreme generosity of the invitation to join their table at this very important event.

What a wonderful day!  I’m not quite sure if we could have ordered a more beautiful, crisp fall day in Seattle.  There were so many people there.  More than I had expected.  So well organized, so many amazing speakers and events. And we had a beautiful walk through UW campus, which took me back about 18 years…  Thank you all who joined us today.  What a truly uplifting experience.  I am so thoroughly touched by everyone’s presence in Team O today.  You know who you are, thank you. Also, for all of our monetary and emotional supporters, we are so blown away from your amazing support.  It was so special to have my parents there today, decked out in their Team O orange t-shirt.  So special to have them with us on this journey and celebrating who we are. I just want them to promise to not cross montlake in traffic again.  That was a scary sight!

I was thinking of my biggest take aways today. I think that the overwhelming amount of love and support from our family and friends would be number one! After that was the amount of the variety of people who autism affects. Every kind of family. Yet, there seemed to be a huge familiar sense to their families to ours. Don’t know how to put that into words. There were quite a few kids on the other end of the autism spectrum, but not as many as there were kids like O who were high functioning.  My God, I still can’t believe how many kids there were like O there.  Wow. So many similar behaviors exhibited in those kids.  They all had a similar look to him. A kinda sweet, yet kinda vacated, yet kinda overstimulated look. Kinda like they are viewing the world through different colored glasses than we all are. I kinda get it now, more than I did when I woke up this morning, that’s for sure. I noticed the kids, but I couldn’t make connections yet. Not quite ready for that. One step at a time. I saw a couple of the moms and I saw the look on their faces, just like mine…a look of’ ‘is your whole like capitivated, enticed, and turned upside down by this thing we call autism?’ After I saw that same look, I couldn’t look any of them in the eye. It was too painful. Maybe this will be a good measure of my progress.  By next year at this time, I’ll be at a different space with this all.  I’m definitely on the right path and have such an amazing support system. We are so truly blessed.

One event that I look forward to participating in is this one:

http://www.tessera.org/conference.html

It seems like a very good conference for families living with autism.  Many different subjects matters are addressed.  I’m really interested in the whole functional medicine side of this. I am curious to learn more about this from our doctor.  Also, Krista’s dad, Jim, who joined us today, has an amazing amount of knowledge on the subject.  I’m so excited to explore this. I always know that when you have faith in something and believe in it, it has more power.  I believe! I’m ready to learn!

I was so proud of O today.  He was a bit mesmerized by all of us wearing Team O shirts with his image and name on them. He was kinda a mini celebrity. It was sweet to see E running around in the middle of the UW practice field, with his cute blue cast on. Julian did a great job of being a trooper. Probably missing a soccer game and having to wake up early to go on a walk for his brother was a super priority for him.  It was really sweet last night that he and his buddies wore Team O Tshirts to their CYO dance. I like how the girls were asking, ‘what’s Team  O?’ They were clearly thinking that the t-shirts were cool.  Julian casually responded, ‘Oh, that’s my brother’.  Super cool.

M commented that we all spoil O.  I am sitting with that and pondering that but I think that she is right.  I can’t not bend over backwards for him.  When he is rebelling and screaming I just want him to be quiet and be at peace with himself and the world around him.  I’ll give into a heck of alot more than I did with J.  We met with our fabulous Dr. C yesterday (have I said today how much we worship her!!).  She told us that O is deficient in Vitamin D, and he is apparently sensitive to cashews, so we are to steer away from them.  Our Dr. went to a functional medicine conference all of last week and came back with some great information that she is anxious to share with us.  She told me that she was half there for herself, and half there for me.  Okay…seriously…what kind of doctor in this modern world even thinks that, furthermore states that!  I LOVE HER!!!  When we are the office for Emil’s appointment, she took O to the potty.  Wow.  We are darned lucky.  I am so excited to hear what she has to share with us about some new thoughts, theories, and ideas about autism.  I felt the second that I met her that she holds one of the pieces of the puzzle to this autism thing in her hands.  We’re definitely on the right path.

So, yes, I am getting back on path and am SUPER excited for Saturday.  I had some t-shirts made for our team.  I don’t know how many will show, but we will definitely be carrying the thoughts and prayers of many of our family and friends who cannot be there with us right in our hearts.  This is the step that I talked about, this is the one where there is no coming back from.  This is it!  I am very excited for it.  We are all going to be awesome because we are inherently awesome.

Today E went to school.  Hallelujah.  That little guy is painfully adorable, but he has been ridiculously attached to me lately, maybe the last 2 months. And that is taking its toll.  He makes me feel claustrophobic the way that he pulls on me, screams at me and demands more than I can give of myself to him.  His screaming makes me want to scream.  In fact, often does.  Our poor neighbors.  I am seriously bewildered that no one has called CPS on us yet. The constant screaming that is coming out of one child, or parent’s, mouth at any given time is enough to warrant curiosity, or atleast some serious annoyance.  Thank you, dear neighbors for dealing with us.  You will be truly awarded somehow.  Maybe some cookies are coming your way.  Not from me. I can’t bake.  I can, but I don’t enjoy it so I won’t get any better.  Follow recipes are like following rules…boring!  You do it because you have to, but not because you want to.  Cooking is where it is at.  No rules, some parameters and go!!! Be creative!  I love it.  As a side note, I will not be a short order cook for anyone.  Maybe I should make one morning/week on the weekend a time when I could be a short order cook so that my family can get their fill of bossing me around. Somehow though, I think that they are satisfied with the food generated out of this kitchen. J is the best eater. To a fault. He has become a HUGE gourmet.  I know that it will end up being a plus for him in the long run, but sometimes, I just want him to be able to have cheerios for breakfast.  I wrote on the shopping list tonight for Peter to get ‘Natural Fruit Loops’.  Apparently, QFC didn’t have any so he got regular Fruit Loops, that actually contain NO real fruit, but heck, they do have that brilliant toucan on the front of the box.  You should have seen Julian’s eyes light up when he saw that box walking in the door.  He looked at it, at me, at it, and at me again. Like he couldn’t believe his good fortune.  Wow, if that is all it takes to get him to do something, I might be having to buy Fruit Loops at costco soon.  Please tell me that my life hasn’t come to this!  I don’t want to be THAT mom. O has me doing anything for him.  It seems that I make him ANYTHING that he wants for breakfast as long as he eats.  That kidlet get numerous amount of sweets during the day.  We all do spoil him.  He is so darned cute though. When that sweet, magical side of O has his eyes on you, you are completely at his mercy.  How could you not be.  His sweet is different than any person that I’ve ever encountered.  But, again, his angry side is unbearable and unfathomable. And completely unpredictable. Yes, he is so unbelievably sweet, but the bitter side is so unbelievably bitter.  I wouldn’t know what to compare it to. The sweet side is easy to c0mpare…walking down the street in Kyoto on a mid-spring day with the subtle scent of cherry blossoms in the air. There are even a few petals scattered here and there.  It is warm so the scent of the petals is everywhere, even where there aren’t any cherry blossoms in bloom. But, the later harsher winds of spring haven’t forced most of the petals to fall prematurely. There is a little shop on the second level of a large street that has only about 10 small tables.  The tables are so incredibly rustic. You wonder how many ladies have been sitting in the same seat over the generations. You order ‘kuzukiri’, the most perfect mix of cold and sweet with a hint of saltiness. That is the kind of sweet that O is when he is his sweetest. I guess that there are words to describe that sweetness. The bitter side I cannot describe yet. Hopefully it will change before the words to describe it come to mind. That is my hope and my prayer for today.