MAR
03

I’m tired and it hurts. Don’t wanna dwell on those two facts but I feel they are worth mentioning. Briefly. I have a thoracic strain and I’ve had houseguests for the last 10 days. I love them very much, they were very helpful. I’m tired.

And I keep looking at my new tattoo…which I love but today I’m questioning where I positioned it. Maybe I should have moved it over a little. Oh well. Not a lot I can do about that now.

Jakob has had an exciting couple weeks. His Grandma was here and he sure does dig her. He was counting down the days until she got here. I have to say, I was very impressed. Without prompting or helping with the numbers, he kept a countdown going for when Grandma would arrive. He woke up one morning and announced “Grandma is coming in 2 days”. He said that before he ordered me to turn on the bathroom lights so I knew he was serious.

He’s so funny with her. He insists on sleeping at “Grandma’s house” which is the guest bedroom. Poor Grandma doesn’t get too much rest when she’s here. He sleeps through the night but he digs his toes into her thighs and he sleeps sideways. No big deal in a king-size bed. She’s dealing with a queen…different story.

I have to laugh at the little changes in his bedtime routine dialogue when she’s here. When he sleeps with me, we do the nightly affirmation, “I am whole, perfect, strong, powerful, harmonious, loving and happy”. I say “I love you” and he says, “I love you more”. Then I say, “see you tomorrow” and he always responds very impatiently, “no see you tomorrow, see you NOW”. I always smile and say, “ok, see you now”. It’s just so amusing how emphatic he is about seeing me NOW.

It’s a different story when Grandma is here. I say, “see you tomorrow” and he says, “see you tomorrow,” and he kicks me out of the room. Game over.

It tickles me on so many levels. I worried so long and so hard that he’s never connect with anyone, that he wouldn’t form relationships. I’m here every day and I had to really work at it. Grandma comes to town every 3-8 weeks and he can’t wait. He misses her, he wants her around, he gets excited to see her, he gets sad when she leaves. Not only is that just awesome, but it’s also proof that he can do it. He’s capable of connecting. Relationships with other people are possible for him. He’s just picky about who he hangs with. He has good taste, I have to admit.

The morning he woke up and Grandma was gone, he said with a sad voice, “no bye-bye Grandma”. I took him to the calendar and we counted how many days it would be until Grandma comes back. He’s done beautifully with this countdown as well. As of today, “Grandma is coming in 20 days”. So flipping cute.

FEB
22

472 lights on, all at once. Not a light in the house left off. I’ve discussed this before and it continues to be a sticking point around here. Between my electric bill and light bulbs, it’s amazing I can still feed him. And it seems that when one light goes out, they all go out. I need to have a stash of bulbs on hand at all times…but sometimes I don’t. Like Saturday.

It was late afternoon when I realized the big light in Jakob’s room was burnt out. It was about 2 seconds later when I also realized I was out of light bulbs. I had used the last one the day before in the downstairs bathroom. Crap. Breathe.

This is where it gets tricky sometimes. I immediately think…”here we go, he’s gonna have a fit, he’s gonna be upset, there will be tears, there will be drama…and I am sooo not in the mood”.

Then I say…”really, how do I know that? It’s not fair to assume just because the last 217 times a light has burnt out and I didn’t have a replacement he went a little nuts doesn’t mean he will this time. This time may be different”.

And then I follow up with…”if I’m cool about it, I will model what I want him to learn…that it’s no big deal. So what if a light bulb burns out and we don’t have any replacements. The world is not coming to an end. We will survive and be just fine. It’s cool. Yup, life will go on. All is well and I got this”.

Since he was playing in my room at the time of the big burnout, I had some time to really get into the most effective state of mind for the big adventure that may or may not occur.

It was 7:58 and he walked down the hall to use the bathroom when he saw it. It was immediate. “Big light on, Big Light On, BIG LIGHT ON!”.

I was prepared…”Big light is burnt ooouuutt!” And I flipped the switch to demonstrate. His response to that was an order. “Mom, go fix it”.

So the banter began…”buddy, we’re all out of light bulbs. I will have to go to the store tomorrow and get some.”

“Mom, go fix it.” Tears welled up in his eyes and his little mouth turned down.

“I can’t go fix it, we’re out of bulbs. It’s ok. Mom will go to the store tomorrow and we’ll fix it.”

“Mom, go fix it right now. No store tomorrow. Store right now.”

“I can’t go to the store right now. I’ll go tomorrow.”

Full blown tears at this point. “Mom go fix it”.

“How about this…we’ll go to Target tomorrow at 9:00 and we’ll get light bulbs…”

“No Target at 9:00……..a ride to Target at 8:58.”

“Ok, a ride to Target at 8:58”.

I saw his wheels turning as he processed all that happened and he composed himself. The sniffles slowed down, he wiped his eyes and said, “No 8:58. A ride to Target at 8:45.”

I just laughed and agreed.

For the remainder of the evening, there was an occasional “big light on” and “Mom, go fix it” but he let it go when I would remind him that we were going to Target at 8:45. (Which I have no doubt that he remembered. He was just checking to see if I’d cave and go immediately.)

Everything was going smoothly the next morning as I wondered if he’d remember our deal. He didn’t even pay attention to the big light out in his room and I almost thought that I was gonna get out of this trip to Target. But the universe had other plans for me. I went to turn on the green light in the garden room and poof. The light was burnt out. He noticed immediately and I gave him the news. He looked at the clock and said, “a ride to Target at 8:45”.

He was so funny. He sat on the couch and watched the clock. He drank his juice and he ate some cereal and never took his eyes off the time for more than a couple seconds. And at 8:45, he jumped up and put on his shoes.

We had a nice chat on the way to Target. We made a list of a few things we needed to pick up. Of course on the list was a specific book for him. He’s in the process of collecting two of each one of this particular series of workbooks. He was ready to collect his second “BrainQuest Woorkbook 1 Book” along with the light bulbs and some sweet tea for Aunt Sandy.

Something truly amazing happened when we arrived at the BrainQuest Workbooks…they didn’t have any of the one he wanted and he remained completely and totally calm. No yelling, no crying or stomping his feet. Not even a little wimper. It was impressive. I stood there so proud and I gave him a couple options…pick out a different book or we could go to Meijer to see if they had any.

He took a minute to think about it. Then he looked me in the eye and said “a ride to Meijer”. Then we turned around, went back the way we came and walked out of Target without any light bulbs. That was huge…to leave without what we came for, to not take our usual route through the store, to not walk around and point out every light that was burnt out or look in the mirror in the young men’s department and say “big Jakob is very, very, very, very, very, very smart”, and to totally bypass all toys. That was a first and it was very cool.

Everything went equally as smooth at Meijer. We found his book, he helped me pick out light bulbs and we got Sandy’s sweet tea. Then he chose aisle 30 for us to check-out.

On the ride home from Meijer, as I was basking in the glory of all that had transpired, I couldn’t help but think of my initial reaction when I saw that first light had burnt out and I realized we were out of bulbs. I had to shake my head and laugh just a little. It does seem that things always work out for us. One way or another, everything turns out ok. And sometimes, things unexpectedly turn out to be amazing.

Trust and faith that we are always right where we’re supposed to be and that all is well.

Something to keep in mind.

In every moment.

FEB
16

We’re getting into that time of year where I become a sappy mess. I cry, I love people, I get possessive and protective and I feel like such a part of a community that I’m almost overwhelmed with emotion. Which is big for me since I have always done everything in my power to avoid heavy emotion.

But when it comes to Jakob, other Autism families (especially my Moms) and everyone who loves, accepts and understands our kids, I can’t help it.

Here is one of the many blessings that Jakob’s diagnosis has given me…friendships and a feeling of unity that I know I never would have experienced without Autism being in our lives.

And I’ve been experiencing it on the “light” side for the past few years. When we began our Son-Rise Program, we began doing something so drastically different than the mainstream Autism community, I’m not sure if most of my peeps knew what to do with me. I was weird…even for weird people. I became a bit of an outcast amongst the already outcast. At least that’s how I felt. May or may not have been true but it was certainly my perception. And it was all good. Each of us has our own journey to take. I realize that now.

But I never stopped loving this Cincinnati Autism Community and wanting the best for everyone in it. I still want that so passionately that I’ve spent the better part of this afternoon sobbing like a baby. I’m exhausted from it.

Remember the kid who was the manager for his high school basketball team? The kid with Autism whose coach let him dress for one game? He played for 4 minutes and scored 20 points? It was all caught on tape and became a national story? His name was Jason McElwain and that was 5 years ago.

Jakob and I were one year into our Autism diagnosis at the time. I was highly medicated (prescription and otherwise), his father and I were separating and I was terrified for so many reasons. But this kid, his 4 minutes, 20 points and the world’s reaction to him was enough to startle me out of my self-induced coma. This kid rocked me.

When the word on the street was “Autism is a lifelong disability with no hope of recovery” and “there’s no known treatment” and “this may be as functional as he ever gets”, that kid on the basketball court gave us all a glimmer of hope.

And now as I watch that footage again from the game, I still think his 20 points are amazing. But what rocks me 5 years later is all the people surrounding him. From the coach who gave him the chance, to the players who passed him the ball, to the students who were cheering in the stands to the community who picked him up and carried him around the gym on their shoulders. Wow. I wanna live there. I want Jakob to be surrounded by the people in that town. That’s the world I want him to know.

Five years later, I know that’s what it’s gonna take for us to connect with our kids . We have to change. We have to be like the people in that video. That’s why our kids are here. They’re here to teach us. Not the other way around. They’re not broken, we are.

We’ve forgotten kindness, understanding, patience and unconditional love. And once we get it, once we remember what it’s like to live that way, then they’ll no longer have the need to be soooo different and they’ll reunite with us.

It’s time for us to wake up. This small town in New York did. Now five years later, here’s where they are. There is so much more to this story than just hope…

FEB
14

After my big “near-death experience”…where do I begin?

I’m gonna begin by taking ownership of all of it. I own my mother-of-all panic attacks. I chose it. Every last second of it. I could have made different choices all along the path I was heading down but I didn’t. I chose what I chose and I know where it landed me. I will not (hopefully) make those same choices again. I am choosing not to re-live that little party.

I own it and I take responsibility. I am not, however, judging or blaming myself for it. I was doing the best I could in each moment, I know that. And I certainly wasn’t doing it to myself on purpose. I was the creator but not the victim.

That feels good. That feels right. That feels true.

I’m also gonna take ownership of all the crap that stirred the panic in me in the first place. The choices I made that weren’t the best choices for me.

I’m pretty good at that…making choices that don’t serve me. What I eat, what I say, how I handle a frustrating situation…why I even choose to see a situation as frustrating in the first place.

That’s where it started. I wasn’t as patient with Jakob as I would have liked to have been. I lost my cool and snapped at him. Right before bed. I knew it the second I did it and immediately the guilt set in. I tried to make it right but it was just before he fell asleep so I couldn’t really tell if I had. God, I felt awful. Still do to an extent. I hate it when that happens. Dammit. I know better. I do. But I wasn’t being present, I wasn’t being conscious, I wasn’t being deliberate. I was tired and being lazy with my thinking. And where did it get me? A horrible night’s sleep filled with fear that I had scarred him for life and a panic attack wake-up call at 4am that landed me in the ER 8 hours later. Perfect.

It was pretty clear that the way I handled that situation was not how I would have liked to have handled it. So if that’s what I don’t want, what is it I do want??

I want to be loving and kind, especially with Jakob. I want to see the perfection in him at all times. I wanna know that when he behaves a certain way that stirs a negative reaction in me that it has nothing to do with him and everything to do with me. It’s always my issue. It’s always me not keeping up with the person I want to be. And that negative emotion I’m feeling is my indicator that I’m not being the best version of me that I can be. Those negative emotions are wonderful reminders that I need to check my thoughts.

Awake and aware and living in the moment. That’s when I’m being my best me.

I know how to do that. I have spent enough time reading books, taking classes, studying and flying all over the freaking country taking seminars to learn how to do that.

The kicker with all that stuff though? Just because I grasp all the concepts and can see very clearly what I need to do, that doesn’t mean I always do it. Just because I “get it” doesn’t mean I’m living it every second.

Obviously.

And that’s ok. Even the Masters weren’t (and aren’t) perfect. I have to cut myself a little bit more of a break when I slip up.

I do know this for sure…when I am living it, those are the most amazing, joyous moments of my life. When I am in the zone and milking those precious experiences for all they can be, that’s worth writing about.

And when I’m not living it…those experiences are worth writing about too. Because never am I more clear about what I do want than when I am living what I don’t. Without feeling as though I may die, I cannot know how I want to live.

(Here comes another tattoo…back of my neck, a very funky yinyang…gotta start searching for the perfect design)…anyway…

So for now, I’m going to keep it pretty simple. I begin with being the best me I can be and that starts by being loving and kind. I believe all will fall into place for Jakob and me and so many questions will be answered from that space. So I’m gonna go to that loving and kind space as much as possible.

And I suppose that at some point that loving kindness will have to be directed at myself…what a growth opportunity that will continue to be…loving myself.

If I follow the advice of a dear friend/shrink/life coach/mentor… I guess I gotta go stand naked in front of a mirror and search for body parts I like…greeeaaaat. I promise to never write about that…well, maybe.

Just like Justin Bieber says, “Never Say Never”…(sorry, I got the Fever and just had to throw that in there…)

FEB
12

Chest pains, numbness in the feet and hands, racing heart, back pain, shortness of breath, light-headedness, dizziness, fatigue, palpitations, cold sweat. Now that’s a party.

It started when the alarm went off at 4:00AM. It began with back pain unlike any back pain I’d ever had. Then one after another, symptoms just kept piling on. With a little help from co-workers and the internet, I was convinced that I was having a big-time health crisis. And it had to be a heart attack.

I am no stranger to panic attacks. I had my first one when I was planning my wedding (should have been a sign). I feel them coming and through the years, I have learned how to stop them in their tracks. I did go the medication route for awhile…the paxil and lexapro. But I got to a point where I decided I just didn’t want to do that anymore. I wanted to control it myself and totally believing that I could, I quit cold turkey (I do not recommend this method). That was about 3 years ago. I’ve managed pretty well…until yesterday.

I was scared. Really scared. I’d never had one like that and I couldn’t shake it. I could slow it down for a little bit but it would come back hard and fast. I kept telling myself “this is all in your head, you can manage this, breathe, it’s just a panic attack, no big deal, you got this, you know what to do, relax”. But I was so dizzy, so uncomfortable, so out of control, so beyond anything I’d ever experienced before. It was different and that’s what really got me worked up. I was having a panic attack over having a heart attack that was actually just a panic attack. Vicious cycle.

My doctor wasn’t in. I had a hair appointment and a party that night. I got in my car and headed to the salon. The trip in the car gave me an opportunity to calm down a little. I really thought I might have it whipped until I sat down to wait for my girl to come get me. I felt like I was gonna faint and I knew I couldn’t sit there for three hours and I knew I’d never make it to the party in that condition. I’d driven by a hospital on my way, so to the ER I went.

I just finally came to the conclusion that it was more than likely a panic attack but if it wasn’t and I died, I’d be really pissed. And I’d feel really stupid for not just going to get checked out. So my embarassed ass walked into the ER, checked in and basically told the girl, “I think I’m having the mother of all panic attacks and I just need someone to confirm that it’s not a heart attack so I can relax”. An EKG, a couple other tests and two hours later, I had my confirmation. Amazing how most of my symptoms diminished significantly almost immediately. For the love…

A lot of thoughts raced through my mind during my little psychological adventure. Even though it ended up not being a near-death experience, it still felt like one at the time. And I’ve been processing some of the realizations that I came to when I was so afraid that I was about to bite it.

The biggie was that I’m not quite ready to die just yet. I’d be lying if I said that I never had thoughts about throwing in the towel. Yeah, I’ve gone there. There are times when I’ve gotten so overwhelmed, frustrated, sad, hopeless, tired, lost and afraid that I’ve thought that dying would have to be easier than continuing on. I’ve thought about what a relief death would be.

Now there’s no need to call in the guys with the white jackets or Dr. Phil quite yet. The thought of taking care of that myself has never been an option. Not only do I not have the balls to do it, but I had a dear friend make that choice several years ago. I’ve seen what gets left behind. I could never do that to my family and friends. I don’t judge her for her choice, I just know that could never be the choice for me. I do sympathize with the position though and there are stories in the news on a regular basis of Autism moms who just can’t do it anymore. I understand.

So I definitely wanna keep going, I feel that there’s a lot left for me to do. There are choices for me to make and games for me to play.

Question is…where do I begin?

FEB
05

We’ve spent a lot of time at Target this past week. When Jakob wants to go shopping, he’s pretty persistent (wonder where he gets that). He’s been on a book kick lately. Now he wants to collect two of each book that he has. Currently, the genre is BrainQuest Workbooks. He just digs them. We sit down and go chapter by chapter, mostly making up our own rules on how the exercises go. Just like everything else Autism…making up our own rules as we go along.

Yesterday at Target, he suckered me into a battery-operated toy. He caught me in a weak moment and he knew it. It’s a little V-Tech number, “ABC Text and Go”. I’m not a fan of anything that takes batteries for a number of reasons. The cost of batteries is one. Another would be the sounds the things make remind me of being in the middle of a really obnoxious casino. But it’s the lack of opportunities for interaction when he has one that is my biggest issue.

At one point, all battery-operated devices were removed from the house. It’s actually something that is recommended when doing a Son Rise Program. It makes complete and total sense and I agree with it whole-heartedly. We want our kids to learn how to relate to and interact with people. WE have to be the most interesting thing in the room if they’re gonna be willing to leave their world of Autism and join us in our world. Nobody can compete with those toys, video games, tv’s, movies or computers. They’ll pick that stuff over us every time. And I can’t blame them. When they’re desperate for control and predictability, they’re way more likely to get that from those things than they are from any of us.

I can build a very solid anti-technology case. And I do believe what I spew. And yet, I have my weak moments. Moments when I don’t have it in me to be the most interesting thing in the room. Moments when I just need a break. Moments when I’m feeling sorry for myself and wishing I could do something or be somewhere else. Moments when I need to do the laundry or make a phone call…

I have to admit, it’s different now than it was three years ago. Back then, Jakob played with these horrible things to the exclusion of everything else. He would be so engrossed in them that the house could be burning down around him and he wouldn’t budge. He would get so involved that he would wet himself because he just couldn’t hold it anymore but was unwilling to stop the game to go to the bathroom. There was no way anyone could talk to him and he would hear them. Now, he hears and understands all I say to him. He’ll stop them to eat, go to the bathroom, take a bath. He’ll let me put them away and they’ll stay put away until late the next day. I guess that could be considered progress.

Just so I’m clear…I hate the stupid things. I’d beat them all to death with a sledgehammer if I could. I daydream about that. Shattered LeapPads…tiny pieces of Tad and Leap and Lily litter the floor. Frog guts all over the walls. That’s what I’m talking about. But it’s just a dream. Dammit.

Admittedly, this has been a tough one for me and I’m more than a little conflicted about it. I know that if I get rid of them, I need to be really comfortable about it and comfortable with any reaction that Jakob may have to them being gone. He will know if I’m unsure and he will use it against me. He will poke and prod and use any and all means at his disposal to get me to cave. And I will be in total hell the entire time. And I know, even if I can hold out for awhile, that if I’m unsure, I will eventually cave. And if it takes 3 days to cave, then I’ve just taught him that if he wants something, all he has to do is go nuts on me for three days and he’ll get it. Not a good precedent to set.

And Jakob can sense my desire to destroy these devices with great fanfare and violence. It bubbles within me so strongly and passionately that it has to thrill him greatly that he can stir that reaction in me so easily…by just turning on the power. Talk about control and predictability; he has a double whammy with these suckers.

So all I need to do is get comfortable with it, right? One way or another…comfortable with taking them away or comfortable with him having them. Ha. That’s been my growth opportunity recently. An opportunity I have yet to embrace. I’m doing everything in my power to avoid it. I’m coming up with excuse after excuse after excuse. I’m really good at rationalizing too (go back 4 paragraphs in case you didn’t catch that). So what’s the deal?

I don’t know. Actually, that’s a lie. I’m the only one who can know because I’m the only one living my life. Whatever it is, I don’t want to face it right now. I just don’t.

I know a big part of it is I can’t decide which side to choose. When he has them, I wish he didn’t and when he doesn’t have them, I long for the break they give me. I’m torn.

I’ve got myself all worked up just putting it all into words. Frickin’ Leap, Tad and Lily are giving me angina. For the love…

Here comes the rapid-fire inner dialogue. Make peace with it. Make peace with it. Just (bleeping) make peace with it. Make peace with where I am. Make peace with where we are. Ok…

I’m avoiding making a decision which is actually a decision…yay! I’m conflicted…that’s great! I’m torn…awesome! I’m outa my flippin’ mind on this one…wonderful!!!

This too shall pass. All is well. We’re right where we’re supposed to be. Go back 10 paragraphs and re-read some brilliantly thought-through rationalizations. We’re doing the best that we can. We’ll make changes when we decide we’re ready. The stupid things will die on their own someday…soon, hopefully. He’s happy. I can do laundry and write journal entries. I have time to read a little vampire porn here and there. We’re doing great in so many ways. He’s talking. He’s connecting. He’s affectionate. He’s interactive. He digs me and wants me around. He understands everything being said to him. He’s grasping concepts. He’s damn cute. He’s so much fun. He has a sense of humor. He’s doing new things every day. He’s becoming more. We both are. Yeah (big sigh), we’re doing great.

Those frogs and Duracell can’t take that away from us.

I feel much better now. Blood pressure is back to normal and the chest pains have subsided.

I do have one lingering question though…does Target sell sledgehammers?

Just kidding…

FEB
03

So we went back to the dentist yesterday. This time, we had to get two molds done and a quick bite impression. I’m so glad we practiced the molds before we went. We spent a lot of time opening his mouth, shoving his fingers in and holding the pose for 20 seconds. That was about the best we could do to create an experience close to what he was gonna have. We made the whole thing a game. We got a little silly with the counting and the sound effects for when we opened and shut his mouth. When it came time to do it, there was no whining, no crying, no screaming, no foot- stomping. Even as his eyes were watering with that goo in his mouth, he was a champ. It was a proud moment.

The bite impression, which was by far an easier process, was a little different. They hadn’t told me about that (and I had asked, a couple times, if there would be anything other than molds). He wanted no part of sticking that warm pink wax in his mouth. I give him a ton of credit though. With only a minor outburst or two, he let us put it in. He just didn’t understand that he was supposed to bite down on it. And we tried several different moves…modeling it for him, pushing up on his chin while pushing down on the top of his head. No luck. By this point, he was irritated. And I was slightly annoyed…if I would have only known they were gonna do that…

So we took a break. They left us alone in the room with him and I started digging through my purse. Gum. I had gum. Jakob has never put gum in his mouth before but it was the best shot I had. We needed that impression if we wanted to get that mouthpiece made and I didn’t wanna have to come all the way back for just a quick bite.

I took out a piece of Orbit, showed it to him and then stuck it in my mouth. I held it as I bit down hard on one side and I made some silly face and some weird noise (he likes that). Then I showed him “my teeth” in the gum. He checked it out. He seemed interested and didn’t scream “no teeth” at me. We had movement in a good direction so I did it a couple more times. With still no resistance from him, I got him his own piece and to my pleasant surprise, he let me put it in his mouth and he bit down on it. Several times. Willingly. Huh. Cool. I explained that that was what we needed him to do with the warm pink stuff and that it would be just one quick bite and it would be over. He seemed to grasp the concept so we grabbed the nurse and we got it done. Wow. That was awesome.

That hour at the dentist easily represented the whole of our existence in this journey. Preparation is key. Inner and outer calm is a must. Loving persistence while allowing him to do it in his own time is the only way it gets done peacefully. Fun and enthusiasm coming from a sincere place is golden.

When those elements are present, our odds of really connecting are pretty great. When I think about it, all those elements are exactly how I like to be handled, dealt with, interacted with. Whenever someone treats me with that kind of respect, I’m gonna like them and want to hang out with them more often.

It’s easy to lose sight of that in the craziness that life can be when I’m not being present. And who would’ve ever thought I’d be reminded of such valuable lessons at of all places, the dentist. I can only imagine how far we’ll go if I can be that present all the time.

I guess I know what to practice.

JAN
29

A very bright 18-year-old made a very good observation about me recently. He said, “her mind is so busy and intense that she can be exhausting”. I laughed out loud when I heard that because I have no doubt that it’s true. I would simply add that if you really wanna experience exhaustion, live in this mind of mine for a few hours. You’ll want a long nap when you’re done.

I don’t remember being this much of a thinker before Jakob. Maybe I was and the thoughts were just about much lighter subjects than “what is the meaning of life” and “why am I here” and “why did that just happen” and “who am I, really”. Regardless, I think a lot now and it can be very intense and very overwhelming.

It seems to be at its worst when I’m tired and I’ve been very tired lately. Jakob’s going to bed later, I’m getting up a little earlier and we both have nights when we toss and turn. I wonder if his mind races as fast as mine does. I wonder what he’s thinking about. I wonder if he jumps from one subject to another. I wonder if he’s craving certain experiences to the point where he feels he’ll explode if he doesn’t have them. I wonder if he creates long lists about everything he hates about his life. I wonder if he worries. I wonder if he’s scared. I wonder if he just wants to say screw it and go out and have a few glasses of wine with his friends. Starting to get a sense of it? That’s nothing…trust me.

Analysis to paralysis.

Analyze what? Everything.

My values, my needs and wants and desires, my house, my car, my finances, my friends, boys, work, motherhood, marriage, pastries, parties, chardonnay vs. white zin vs. Bacardi, my cat, my parents, Hawaii, consciousness, self-loathing, love. Getting more of a sense? Still, that’s nothing.

I wish I would’ve done that differently. I wish I would have said that instead. Why in the world did I do that? Wear that? Think that? Go there? Eat that? Buy that? Drink that much?

Exhausted yet? I am.

When I get to this place, it’s a sign to me of a few different things. One, it’s been over three months since I’ve gotten out of town (it’s been since August). Two, I need to be doing more reading, yoga and meditating. And three, I need to spend more time experiencing Jakob.

He gets it. He gets what it means to be present and that is so what I need to remember how to do. The here and now is the only place Jakob lives.

Just look at what he does when he eats his hot dogs. This is a process he goes through every time (which is 4 times a day). See how they’re lined up? Same way every time. See the size of each piece? He nibbles on each one until they are the exact size and shape he wants. The number of pieces in each line, the distance between each piece and the space between the lines…same every time. And you should know that this picture was taken in the middle of the process. You should see what he does when he gets each piece down to a microscopic size that he still tries to pick up with his fork. That requires serious presence.

Jakob is so in the moment when he eats his hot dogs. And when he jumps on his trampoline and bounces on his ball and when he reads his books and when he’s pointing at all the burnt out lights in the house. No matter what he’s doing, he’s doing it with complete abandon. He’s living it to the fullest. Same goes for when he’s not too happy about something. Full abandon there too.

He’s also a little person who knows what he wants. He doesn’t hem and haw and weigh all his options. He makes his decision and he goes for it and God help anyone who gets in his way.

Presence. Decisiveness. Conviction. Passion. Abandon.

If I could live my life like that, being in my head wouldn’t be exhausting. It would be exhilarating. Life would be exciting and fun. If I could get rid of all the inner dialogue that sends me into a tailspin and just be…

Just Be.

I know how to get there, now it’s just time for me to go. And I have this amazing little blond-haired, brown-eyed light that shines so brightly each time that I lose my way. A little light that without words says “look at me, follow me, do this, have fun, be silly, be you”. I just have to remember that that light is there for me anytime I need it and it will lead me home.

It will lead me home to me.

JAN
24

Welcome to a Panic Attack Monday. I can say that now and giggle a little bit…knowing that all conditions are favorable for a full-on panic attack to occur but thanks to my awareness of my internal warning system, I can generally put a stop to it before it gets to a Level 1 emergency. Some deep cleansing breaths and I’m fine. Slow breath in through the nose and out through the mouth. We can get a little fancier and do a seven count in, hold for seven, release for seven and do that seven times. Whatever it takes.

Why can money send most people into a full-blown tailspin???

This happens every once in awhile with me. January is a no-brainer, everybody goes a little goofy in January when all the Christmas bills start showing up. I was actually very well-behaved this holiday season and maybe that’s why this is a little extra nerve-racking.

I remember back when I was making a quarter of what I make now and it seemed like I was living so much larger then…how does that work? Fine…I have a bigger mortgage now, the electric bill is insane, life just gets more expensive…blah, blah, blah. But still. Seriously?

All it takes is one good look in the kitchen and I see a big chunk of my salary. It’s all in that plastic tub. A $138 prescription here, a $65 supplement there, a $70 chelator here and a $85 digestive enzyme there. And that’s just the beginning. Really. Currently, we are giving Jakob 19 different prescriptions, vitamins and supplements and we’ll be adding at least 2 more in the next few weeks. They range from $20-$145 each per month. And insurance doesn’t cover much of it.

Autism sure can be pricey. It can break people. It may break me.

But what do I do? Which do I stop? When he’s doing so great, what do we give up? When do we say enough is enough?

As the heart palpitations began to pick up their pace and I was starting to get pissed, I decided to walk away from the bank statement. I jammed it into my purse and went down the stairs to the playroom 2-way mirror so I could take a look at my cute kid while he played with Susan, our Son-Rise Outreach Facilitator who’s in from Michigan for the day. I continued my breathing exercises as I just watched. He’s such a happy kid, he laughs a lot. He’s engaged and he’s being silly. He’s making eye contact and he’s connecting. He’s not the same kid he was three years ago when we started Son Rise and the heavy-duty biomedical intervention. He’s not even the same kid he was three weeks ago.

I have to be careful while watching him through the 2-way mirror. Since he insists on all lights being on, he can see me on the other side of the glass if he gets right up on it. I wasn’t quite fast enough to get out of the way and he spotted me (I swear he senses my presence through the wall and that’s why he runs to the mirror). I started to cuss a little at myself for being so slow when I heard this little voice say “Hi Mom”.

I turned around to see this adorable smiling face as he said it again, “Hi Mom”. I smiled back and signed “I love you”. And he said “I love you more”.

Then I blew him a kiss and he blew one right back. I just smiled and turned to walk up the stairs and he said, “No bye-bye Mom”.

So I went to the window, pressed my face up against the glass and he gave me the biggest grin. I told him, “I’ll be in to play at 2:00”. So naturally, he said, “No 2:00, 1:58”.

This is a child who never spoke, who never cared if I was in the same room, who screamed and threw tantrums,somedays non-stop. He would hit me, kick me and not let me hold him. He didn’t want any part of anybody, anytime.

“Hi Mom. I love you more. No bye-bye Mom.”

Panic attack over. Decision made. Other stuff will have to go first…even if it’s the house, the car, the clothes, the shoes, the hair…(ouch). I mean it.

“Hi Mom. I love you more. No bye-bye Mom.”

Worth every penny.

JAN
19

Well that was fun. No, really, it was. Once I got past the feeling of wanting to do physical harm to people who obviously don’t get it, it was actually fun.

Dentist appointment. Those two words alone will create a reaction in any Autism Mom. Wanna make it bigger? One hour, forty-five minute dentist appointment with no drugs…for him or for me. For the love…

Several weeks ago, we took Jakob to a cranial sacral therapist who told us that Jakob has a blocked airway. Something’s gone a little funky in his mouth and he’s not getting enough oxygen in his system and it’s likely contributing to a lot of his issues. So to fix that, we need to get a special mouthpiece. Riiight.

So today was our appointment with the specialist. I had placed a call last week to them asking what all they planned on doing to him. I needed the details of the examination, if there would be x-rays or molds, basically what that whole scene would entail. I needed a step-by-step process so I could prepare him for it. If he knows what to expect, we can get through it. The kid is a champ at blood work these days, all because we get him ready for it.

Pretty much all I got out of the phone call was there would be an x-ray and they’d do a mold. So we’ve been pretending to take pictures of his head and shove stuff in his mouth, of course making it all into a fun, silly game.

What I didn’t prepare him for was all the waiting. The ridiculous waiting. The hour and forty-five minutes we were there consisted of less than 3 minutes of actual contact with the doctor or nurse and one x-ray.

Seriously.

There was a pretty intense meltdown when we finally made it to the x-ray room. I was ready to pack it up and just come back another day. But all we needed was one quick picture and it didn’t involve sticking anything in his mouth. So his dad held him while I stood in front of him, held his face in my hands, looked in his eyes and did everything in my power to be calm for him. He relaxed enough for us to get it done and then we released him.

It all could have been so simple. In and out in 10 minutes. But it was another example of how the general population just doesn’t get it. We still have so far to go. Maybe that’s why there are so many of them (kids with Autism)…to speed up the process of people getting it. They’re pretty tough to ignore, especially in groups.

The whole experience was actually slightly profound for me. I did remain calm…inside and out. I would start to get a little annoyed but was able to let go pretty quickly, fully understanding that all of it was out of my control. One hour in, I told the nurse that we were pushing it with him. It didn’t seem to make anybody move any faster but that was ok. It was totally out of my control. Jakob screamed, cried and kicked and that was ok. Totally out of my control. I was able to make peace with all of it as it was happening.

I was also able to make peace with people’s reactions. I appreciate the nurses, doctors and office workers trying to act like they’ve seen it all before. And maybe they have but that doesn’t mean they get it. Or that they don’t judge it. I have a pretty good sense for other people’s discomfort and I certainly sensed some while we were there.

In the past, other people’s discomfort would cause me to change my behavior. Maybe I’d try to control Jakob or maybe I would just get nervous and uncomfortable myself. Not this time. I was “in the zone”. I moved slowly and deliberately. I was steady. I was a rock. Everybody in that room could’ve been on fire and I wouldn’t have noticed. I was so focused on being the eye in Jakob’s storm. In that x-ray room, I held his sweet little face in my hands and breathed. He sensed my calm. With huge tears in his eyes, he looked at me and I felt him relax. It was quick but we did it.

I know he has that in him, the ability to find his inner peace. And I know that’s where all healing begins. So I really believe my job every day is to help him find that place. And it was a nice reminder at the dentist that what I model, I teach.

So since we’ll be visiting that office again, it wouldn’t hurt to up yoga to 4 times per week. A little added support never hurts…

Om…