Sunday, December 23, 2012

Winter Vacation: the Good, the Bad, and the Best

We just got home from a short vacation to Oregon. On the first day, we visited with family in Eugene and then crossed over the mountains that night heading to our destination at the Eagle Crest Resort, just north of Bend. We spent the rest of our vacation gallavanting around central Oregon, visiting Redmond, Sunriver, Sisters, and Bend. We came home by way of the Dalles and the beautiful Columbia Gorge, which was a fun (and much less snowy!) drive back toward Washington. It was nice to get away for a few days, and here are some of the highlights of our trip.

Good: Seeing my Grandma, who was recently hospitalized with another bout of pneumonia. She got to open up our Christmas present to her and we got some nice pictures. We also got to see other family members and learned that the next day Grandma was well enough to be released from the hospital. We were so happy to learn she wouldn't be spending Christmas in the hospital!
Bad: Having to make our trip over the mountains with packed snow and ice on the road in the evening when it was pitch black with low visibility due to snow and wind.
Good:  Having new tires with good traction, eliminating the need for putting on chains while driving in snowy conditions.  
Bad: Running over what looked like a pile of snow in the middle of our lane, which was actually a solid chunk of ice that ended up breaking 2 parts under my car.
Good: Roads that were mostly devoid of cars, except for semi trucks, and still being able to drive my car after colliding with the ice block.
Bad: Getting stuck behind semi trucks with their chains on, keeping me from going over 30 MPH for endless miles. Then, due to the low visibility from snow spray off the trucks, running over some tire chains in the road that I couldn’t see until I was on top of them.  
Good: After already going over 30 miles since I collided with the ice, finally hearing a loud rattling sound coming from under my car which indicated that my car was somehow damaged (or possibly dragging the chains I had just run over!) and keeping me from driving further until I knew what was wrong.  
Bad: Needing to find a safe place to pull over in the middle of nowhere with good lighting and a store that was open late at night so we could try to find a way to fix my car.
Imagine this, only on the front of my car underneath between
the wheels, much less sticky, and with a very grumpy hubby
laying on the snowy ground with frozen hands. For more fun
with duct tape, visit the page where this image came from.
Good: Having a husband with ultra long arms that could reach far enough under my car while lying on the snowy ground in 10-degree weather, eliminating the need to dig out our jack and raise the car up to attempt to fix the car with duct tape.
Bad: After using half a roll of duct tape, figuring out that it doesn’t stick in really cold weather. It’s like using damp scotch tape and is essentially useless.

Good: Despite the delays, getting to our hotel safely without the duct tape coming loose. Prayer works!

Bad: Pulling out of our parking space at the hotel the next morning and having the duct tape immediately come loose.
Good: Taping the car back together again, only in 30-degree weather with dry ground in the daylight – a big improvement from the night before! And, finding a dealership with a collision center about 20 minutes away from where we were staying.
Bad: The dealership not having our car’s parts in stock.
Good: After getting the estimate, the repair guys gave us a free temporary fix that could last until we got home if the parts didn't come in before we left town. 
Bad: Having to wait 2 more days to fix our car and spending an unexpected $250. Ouch. 
Good: Not needing to file an insurance claim and knowing that it could have been MUCH worse for us in so many ways. And, the repair only took 30 minutes to complete.
Bad: Both boys coming down with a cold on the first day of our trip and not having any of our cold meds or a thermometer with us to monitor Prince Charming’s fever.
Good: The fact that both boys had great attitudes and dealt with their colds in stride, even while going on short day trips around central Oregon.
Bad: Having to maintain a gluten-free diet while away from home.
Good: Getting a room with a kitchen and being able to find gluten-free dining options wherever we went, thanks to Oregon’s “crunchy” personality and a free, helpful GF dining app on my phone.   
The Old Mill District, Bend, OR
Bad: Forgetting to bring melatonin for the boys to help them sleep due to the change in environment, and then needing to tediously monitor them while they went to sleep each night – a 2 hour process involving arguments between the boys and tears each night.
Good: Experiencing the quiet and calm of the small towns we were in, and realizing that shopping in cute little downtown shops was much more relaxed than what we might have experienced at home in the retail rush before Christmas.
Good: Finding eclectic treasures in quaint stores – some for our house, some for our taste buds, and a few Christmas presents mixed in for fun.

Good: Riding in a wagon pulled by a pair of Clydesdale horses while viewing the Christmas light display at our resort on a cold and crisp night.
The Superintendent took this picture!
Good: While on our wagon ride, discovering that I was sitting next to the Superintendent of Public Schools in the town we were staying in, and getting to talk with him about autism and services for special needs children in schools.

Good: For the first time ever while on vacation, not having a bathroom emergency with one or both of the boys!
Good: Surviving the end of the Mayan Calendar!
Good: Getting a reprieve from the sadness of recent events in our nation – in Connecticut and elsewhere.
Good: Watching The Polar Express in our hotel room while all cuddled on the couch together on a cold, snowy night.
Hanging out in our hotel room on a sunny, lazy morning.
Prince Charming was acting like a meerkat,
popping up from behind the couch cushions.
Good: Achieving a balance of seeing things and having fun while on vacation, but also building in some down time for relaxation.
Good: Except for the matter of the boys not feeling well and not having melatonin at night, they both had good attitudes almost the entire trip, including full days of driving both to and from our destination. A true holiday miracle!
Good: Driving home on a different route that was much less-traveled, fun to drive, and completely clear of bad weather.
Good: Avoiding a ticket by the skin of my teeth! A guy in a Prius was following me at my fast rate of speed and quickly got irritated when I suddenly slowed down after seeing a cop. I watched the cop pass me in the oncoming lane, take notice of my excessive speed, suddenly flip a U-turn in the middle of the highway, and pull in 3 cars behind me. The Prius somehow didn’t see it happen and quickly passed me out of his frustration at my reduced speed. He was pulled over less than 10 seconds later. Not getting a ticket when it was intended for me = best Christmas present ever.
BEST: Coming home to a clean house, our own comfy beds, and a huge bottle of melatonin.          

Tuesday, December 4, 2012

It's my birthday and YOU get the present!

I found the coolest mug on Amazon last week.


 
I bought it on impulse. I couldn't resist. I thought it was cute with the thermal ink changing color when there is coffee (or other hot beverage) in your cup.
 
Click here to buy on Amazon.com.
Guess what? I bought two mugs - one for me and one for you, my dear readers! It's my birthday and you get to share in the fun!

You may recall that I announced a book giveaway last Friday, but I had some technical issues with the two widgets I used for the online giveaway entry. So, I decided to make it super simple to enter to win this mug.

All you have to do is leave a comment below, but you have to include your email address in order to be included in the giveaway.

See? Easy, right?

There is a very short window of opportunity here, since I will announce the winners of both the book and the mug at the same time on Wednesday.

You have until midnight tonight! Good luck!

Friday, November 30, 2012

Book Review & Giveaway: Easy to Love but Hard to Raise

Have you finished your Christmas shopping yet? Well, today I’m trying to help you out a little bit with that. I have a book that is perfect to give to your extended family members who maybe need a little insight about special needs. Or, you can keep it as a nice gift for yourself as a reminder that you are not alone.

I was contacted by DRT Press about the new book, Easy to Love but Hard to Raise: Real Parents; Challenging Kids, True Stories, edited by Kay Marner and Adrienne Ehlert Bashista. They didn’t give me a big, fat check to say nice things about them, but they did send me a shiny, new copy of this book in paperback. I was cool with that because I love books, and may even have a slight problem with them - you should see all the books in my office…
You, my friends, now have a chance to win a copy of Easy to Love but Hard to Raise for your very own! It’s like a little bit of Christmas from me to you (courtesy of DRT Press). J

The editors set the tone for the book when they gave their acknowledgements:
…to all the parents of children who are oh-so-easy to love, but so hard to raise. May you find hope, community and kindred spirits in these pages.

You know you are in for something real when you see a statement like that.
There are stories written by 32 parents that describe situations they’ve had with their children. Between these anecdotes are brief Q & A sections with 25 experts that discuss related issues. This is a unique approach and it provides a nice contrast in content.

Rather than focusing on my favorite moments from the diverse stories shared within its pages, I find myself more drawn to the intent of the book.
I really appreciated the Foreward written by Dr. Edward Hallowell. Here is an excerpt taken from page xi:

Some kids are easy to love. Some kids just sail through childhood getting love wherever and whenever they need it. But then there are the kids who live in alphabet soup. They are not so easy to love. They can be difficult, distant, disobedient, defiant, dangerous, even delusional. They can leave a parent crying herself to sleep every night, they can leave a parent feeling guilty for having negative feelings, they can leave a parent despairing that the child will ever find a way in the world, they can deplete the store of love every parent starts off with.
But they can’t deplete it for long. That’s what’s so amazing about these parents. They keep on going. They never give up. They give their all, and then they find more all to give. They are paragons of the best of the human spirit. And they earn this praise in the hot and dusty arena of the struggle to raise a child who can seem, at times, impossible to raise.    

Yes!
Yes. He gets it.

With the Introduction from Kay Marner, we realize the true meaning of this book. It is this intent with which I write my blog. These words could have just as easily come from me and they speak the truth of what many of us parents in the trenches seek to do by reaching out to others.
No, I’m not a parenting expert, but I am an expert on my child and the complex and contradictory emotions that come with raising her. In time I’ve learned that there’s value in sharing these emotions. Expert advice is not the only thing struggling parents need. We also need to know we’re not alone; to know that other parents are going through similar experiences, making similar mistakes, and searching for similar answers. We need something experts can’t give us: we need each other.

Absolutely.
There’s really nothing more to say, is there?

If you want to learn about how other parents are dealing with ADHD, SPD, OCD, PDD and other diagnoses, than you should definitely take some time to read this book. The parent perspective is a refreshing change from the dry, scientific “experts” that we all read in our spare time between the various daily crises, adventures and attempts to sleep.
One thing is certain, if you hadn’t already figured it out: you are not alone.

Thank you to DRT Press for giving me a chance to read this book, and also for allowing me to give away a copy to my dear readers. To learn more about this book, visit www.easytolovebut.com or www.drtpress.com.   
*UPDATE as of 11/30/12 12pm Pacific*
There have been some technical difficulties with the giveaway widget since I posted this 12 hours ago. I started out with Rafflecopter and had a couple of entries, but ultimately I had to trash that one. I have to apologize to those that entered via Rafflecopter - I have no idea who you are...sorry. You will need to re-enter with the new widget. I replaced the old widget with a new one from PunchTab that seems to be doing better, unless you are on Internet Explorer. So far, it does not appear to work in IE at all and will not get past the "loading" screen. You will need to use Chrome or some other browser to enter the giveaway. SORRY for all of the issues this time around.

I’ll announce the winner of the giveaway next week! Good luck, everyone!

Wednesday, November 21, 2012

The spirit of giving

[Image Source]

The holidays are creeping up so fast this year! Am I the only one that is completely blindsided by Thanksgiving? I feel so unprepared!

Normally I like to plan out Christmas gifts far in advance and have the majority of my shopping done before the first of November. I begin my bargain shopping at the New Year’s clearance sales. From then on, I get things in drips and drabs whenever I find an awesome deal that I can’t pass up. By spreading my shopping out over the entire year, it helps save a lot of money for our single income family, and it also saves me from the chaos of shopping during the holiday season.
I have only been shopping on Black Friday once in the past 15 (or more) years. As you can imagine, this was before kids! I consider myself a combat shopper, but I don’t know if I am that hard core! Rather than be up for a post-turkey coma shopping all-nighter extravaganza, I prefer to sleep in, fix some leftovers for breakfast, and casually putter around the house in my robe and slippers.  

I mistakenly attempted to make a quick run to Costco yesterday. I figured that since it wasn’t yet the day before Thanksgiving, it would be busy, but not super duper busy. Well, it was cray cray. Totally insane. The parking lot was so full that people were parking across the street into an overflow lot and tons more cars were circling the lot like vultures. I managed to change course and narrowly escape before I got stuck in the Costco parking lot vortex of terror.
Why do we put ourselves through all of the holiday torture twice in the span of a month? Well, there’s the whole spending time with family thing. Obviously...

In our family we don’t often get to be under the same roof with other family members, and since we have to deal with food allergies it’s usually easier for me to make the holiday meal here at my house. Even though it can be a bit stressful, we always have a fun time.  

But, what is it really all about, Charlie Brown?
Sorry, I couldn’t resist...

Image Source
Well, beyond the whole Pilgrims and Indians thing for Thanksgiving and the birth of Christ for Christmas, I think it really all boils down to one thing:  giving.
We want to give a good meal and prepare foods that we know others will like. We want to give our time and spend it in a meaningful way with our family. We want to give something personal to others that we hope they will enjoy. We want to give a smile. We want to give our love.

(And, depending on your family dynamic, you may want to also give a few choice words or gestures along the way! I am definitely thankful that we don't have a lot of drama in our family!)
Do you want to know what meaningful gift I was offered recently?

$27.
It doesn’t sound overly special, does it? However, I can assure you that the $27 is indeed very special. Let me tell you why.

Last year (if you were reading my blog back then), you may recall me telling you about how I help run a low-cost, sensory-friendly Santa portrait event. It’s such a joy to be a part of! We recently had our first event of 2 scheduled for 2012. We are always excited to see repeats and marvel at how big the kids have gotten since last year.  
One family in particular, a repeat to our event, has a fairly complicated situation. It’s a hodgepodge of diagnosis alphabet soup, including foster children. And, although the kids were on their best behavior, I know that they are very challenging. I think most foster parents would shy away from the tougher cases, but not this family! For all I know, the mom can leap small buildings with a single bound! She has such grace, and her intense focus and determination keep her working toward doing the best she possibly can for each of her children.  

After she arrived to the event with her entourage, she took me aside and quietly said:
“Do you know of any families that would like to attend this event and cannot pay? I want to help with that. This month and we have an extra $27 and I’d like to contribute to those that need it.”

I stood there with a smile on my face, nodding, trying to focus on what she was saying. Wait a minute...did she just say what I think she said? When I realized the depth of her offer, I wanted to burst into tears at her generosity. She was so touched by her experience with our event that she wanted to give that same experience to others…even though she only had $27 extra for the month. The month!
Simply. Incredible.

Image Source
It was such a genuine moment of a giving heart in action. She truly embodies the spirit of giving and serves as an example to all of us.

And that is what it’s really all about.
I hope you have a blessed Thanksgiving!    
 
   

Wednesday, November 14, 2012

Parenthood and the cancer diagnosis

Lately, every time I sit down to watch the NBC show, Parenthood, I am in tears by the end of the episode. And, it’s not just a girly hormonal thing.

Generally speaking, I enjoy the show because they incorporate a lot of relevant topics, weaving them throughout their episodes. Things like: adoption, military/PTSD, Asperger Syndrome, and the larger concept of family.

Their recent story line with Kristina getting breast cancer has touched me. Deeply.

As with most people, I have a family connection to cancer. I have seen loved ones pass away from the ravages of this disease, and it isn’t pretty. It’s never pretty.

I have dealt with my own husband getting a cancer diagnosis just before his 30th birthday.

It was the most difficult time of my life. That seems almost dumb to say because I wasn’t the one who had to deal with cancer – surgery, bone marrow biopsy, scans of all kinds, chemotherapy, radiation and more scans.

I cannot even imagine what Titan must have gone through in those moments by himself.

That’s what I was thinking of as I watched the last scene of the “Together” episode of Parenthood, when Adam was sitting with Kristina in the infusion room, holding her hand while her first round of chemotherapy was administered.

Image Source

I did not get the opportunity to be there with my husband as he went through the process, and it hurts me to this day. It was just not possible.

I wasn’t there when he got a terrible chemical burn when the chemo blew through his vein and destroyed the tissue inside his hand – which still bothers him to this day. I wasn’t there when they began diluting the chemo because of how much it burned going in, which took 2-3 times longer to administer. I wasn’t there when he felt immediately nauseous whenever he pulled into the parking lot of the hospital. I wasn’t there when he almost walked away from his last round of chemo because they couldn’t find a vein and he had to spend hours at 2 different hospitals just trying to get the IV set. I wasn’t there when he got the tattoos on his chest to calibrate the radiation machine. I wasn’t there because I couldn’t be.    

We didn’t have much help during that time. It was pretty much us against the world. I had to take care of my non-stop toddler and screaming baby during Titan’s treatment. It didn’t help that the kids and I were chronically sick the entire time he received chemo. We had one cold after another after another. Titan had to wear a surgical mask whenever he entered our house. For months. Even if I had been able to secure a babysitter to watch the boys while I went with Titan to the hospital, I couldn’t be there because I was a germy threat to each person that had a compromised immune system.

Titan after a round of chemotherapy - December 2005
 
It felt terrible knowing that I was stuck at home and my husband had to go through treatment completely alone. As his wife, it cut me to the core. And there wasn’t a thing I could do about it.

At the time, Monkey was in the thick of the terrible two’s, which we later found out was autism. Prince Charming was only a few months old, and he didn’t sleep, had terrible reflux despite breastfeeding, and he cried all the time. Of course, now we know he had undiagnosed food allergies and autism.

Every single day was intensely challenging, and if I managed to get a couple of hours of uninterrupted sleep a night, I counted myself lucky. Dealing with Titan’s cancer in the middle of all of that was just one more layer of chaos to a life that already felt completely out of control.

I was trying to figure out how to parent my children, who both seemed like unsolvable puzzles. I was trying to care for my husband who still had to work and support us, and couldn’t really help me with the kids or the house. All I could do was educate myself about cancer and treatments. I felt that if I couldn’t be there in person to show my support and sit with him for the hours he had to be there, I could show support from home by learning as much as possible to help him.

During the course of my husband’s diagnosis, surgery and treatment, we made a conscious decision to not focus on being scared or sad, but to maintain a positive and proactive approach. We did not grieve the diagnosis or dwell on anything that could go wrong. We both knew that Titan had to stick around and that there were no other options, so we agreed on maintaining that attitude and asked God to help make our faith a reality.

When we sat in the room with the doctor and went over the results that showed the presence of cancer, we accepted the diagnosis with a smile and not tears. Our response was unsettling to the doctor, who scolded us for not taking things seriously.

It was then that I became educated.   

Up to that point, I was staunchly mainstream with all of my ideas about medicine, food, and doctors. Everything I thought I knew was challenged. And, that is when it all changed for me.  

I learned the difference between vegetarian, vegan and raw. I learned what a naturopath does. I learned that there are stores dedicated only to supplements, vitamins and nutrition. I learned about acid-alkaline balance. I learned that charities like the American Cancer Society and Susan G. Komen are not all they’re cracked up to be. I learned that there is a difference between juice you buy at the grocery store and juice you make at home with a fancy machine.

I learned so many things!

I tried to use this knowledge for my husband’s benefit as he dealt with cancer. He lost 30 pounds, he lowered his cholesterol significantly without prescription medication, and he didn’t lose his hair as they promised us he would (although it did thin a bit). The doctors were extremely worried about his weight loss, and we were able to convince them that it was actually a sign of his good health because of the changes we had made to his diet and nutrition. We were trying to support his body so that he could better deal with the toxic effects of the chemotherapy.

It has been 7 years since he received his diagnosis.   

One thing is for sure: everything we learned about cancer has helped us with autism. Everything.

For that, I am thankful for the experience, despite how difficult it was. My eyes may not have been as open had my husband not had cancer. I probably would have never considered anything “alternative,” like the GFCF diet that unlocked speech for Prince Charming.

My boys are better off now because my husband had cancer. That is a completely bizarre thought, but it’s true.

I wish I could have been there for my husband in the ways I had hoped to as his wife, but our life just didn’t allow for it at the time. I think any wife and wannabe super mom always hopes to do it all, and it’s hard when reality doesn’t allow you to even try. I know that I can’t change what happened and that Titan understood, but I still wish I could have done more. There is still a lot of pain and pangs of guilt over that, which all came flooding back when I watched Parenthood.

Now that we are so far removed from the diagnosis and treatment, I can allow myself to feel those feelings. A little bit of distance from it helps me realize how remarkable the whole thing was, and how well we did in the circumstances.

It feels like an eternity has passed, yet when watching the show, it’s like it was just yesterday. I guess as long as the cancer storyline continues on Parenthood, I’ll get a little bit of therapy one episode at a time.      

          

Wednesday, November 7, 2012

Caffeinated Autism Mom for Governor?

Apparently I was written in as a candidate for Governor on a ballot! Talk about shock. Wanna know who thought I was more qualified than the other candidates?

My dad.

I guess I should take it as a compliment, although I thought it was a waste of a perfectly good vote.
Image Source
I will admit that I got a tiny bit of satisfaction thinking that some person in the Auditor's office was going to have to add me to a list of write-in candidates.

Right along with Mickey Mouse.

Well, I was almost famous for one day with my single vote for Governor.

In honor of election day and my brief stint as a candidate for Governor, I thought I would make an announcement.

I won the Best Parenting Blog in the Best of Western Washington contest that I was harrassing you about on Facebook for the better part of September and October!

If you voted for me, I really appreciate it. The contest may be a local one, but to those of us who live in the Seattle area, it's kind of a big deal and I'm very excited about winning.

One little side note:
I saw on their website that I won the contest (and even checked it twice that day out of disbelief!), but then their site went down. Now, I can't obsessively check it just to "make sure." Since then, they keep pushing out the date they will re-release the final tally. Something about technical issues. So, I won according to their site, pre-crash, and I hope it stays that way! I'm moving forward with it, and hope I don't have to eat my words later...  

You may also remember me asking begging you for your vote in the Chase Community Giving $5 million grant contest. My nonprofit was ultimately too small and unpopular to win, but I'm happy for each and every vote we got. I hope we can try again next year and do even better. I guess I can't win 'em all, right?

I found this little gem on Facebook.
Make sure my coffee is Stumptown Roasters.
Their coffee is so yummy! :-)
In honor of the one thing I did win, and as a thank you to everyone for putting up with the constant barrage of voting requests on Facebook and Twitter, I'm announcing a blog giveaway!

I have a coffee-themed gift. Several, actually. Did you expect anything less from CAM? I haven't chosen the specific item I'm going to give away for this contest, but they are all cool if you like coffee. And, you do like coffee, don't you? 

To enter, all you have to do is leave me your favorite picture, cartoon, or image related to coffee and post it on my Facebook page. Make sure to include your email address so I can reach you if you win! I will select a winner and make the announcement on Monday the 12th.

Good luck, and thank you for voting!        

Wednesday, October 24, 2012

Jon Stewart made me cry

Well, kind of. You see, Jon Stewart helps put together a benefit for autism called "Night of Too Many Stars," and there was a moment from this year's show that has gone viral. In fact, you may have already seen it 15 times on Facebook.

Katy Perry sang "Firework" with one of her biggest fans, a girl with autism named Jodi DiPiazza. And that is what made me cry.

The story from the parents at the beginning of this video could be any one of us talking about our child. That parent is you. That parent is me. That little girl is my child, and she's your child.

Her dad talked about getting his daughter into a specialized school, and that things changed for her as a result. This is the very problem that so many of us have with our children on the spectrum. Access to proper care. Getting insurance to cover needed therapies and treatments. It's an uphill battle for almost all of us. But, Jodi is proof that when a child with autism is able to access what is needed, a life can change for the better. Not only for her, but for her family.

Jodi's mom said, "It's been difficult. Hard. But, it's amazing how far she's come." I know exactly how she feels. My boys are proof that progress can happen with autism.     

If you haven't yet seen the video, settle in for about 8 minutes. You may want to grab a tissue, too.

Monday, October 8, 2012

A boy's first protective cup

Every boy has that moment. It’s a rite of passage. It’s that moment when they discover that their nether-regions are tender. Monkey recently had his moment.

First, a little back story. Over the summer Monkey began participating in karate. He cried at the idea of karate and we were truly doing it as an activity for Prince Charming, who had become obsessed with martial arts after watching the Avatar cartoon. Every day you could find him practicing his “bending” of the elements. It was fun to see him create awesome moves on the fly.

On the first day of karate class Prince Charming was excited and Monkey was practically kicking and screaming between the tears. My how things changed in one day. Monkey loved seeing Sensei do the moves and the kids follow along. He was motivated by what the other boys were doing.
Prince Charming quickly realized that he had trouble getting his body to copy the moves and positions. He has always struggled with motor planning and has difficulty of moving one hemisphere of his body at the same time as the other hemisphere. For him, he could focus only on manipulating his arms or his legs, but not both at the same time. It was extremely frustrating for him, and he ended up angrily shutting down and leaving the class in tears. 

Monkey enjoyed every class and has happily continued on without his little brother. One of the weekly activities is sparring. Sensei requires protective gear for the boys, including a mouth guard and a protective cup. Monkey didn’t like wearing the mouth guard, and would take it out of his mouth and lay it down on the sweaty mat. Ewww.
I didn’t even attempt getting him to wear the cup after I saw that his idea of sparring was running away from his opponent madly in circles until they captured his flags or scored points on him. He didn’t understand the concept of offensive maneuvering at all and there was really no need for us to try to cover him from head to toe in protective equipment.

Until last week. He learned the benefits of a cup from his brother.
He was harassing Prince Charming at home until the moment when the switch flipped and he became Grumpy Badger. Their interaction ended with Grumpy Badger yelling and punching Monkey…in the groin. Monkey was doubled-over, crying.
Holding himself gingerly, he hobbled and limped over to me and my husband. Screaming more than crying, he says, “He punched me in the penis! And it hurts!”

I had to bite my lip and then leave the room for a moment. I admit it. I silently chuckled behind the kitchen wall while I heard him cry to Titan about his injury. I did. I only came back into the room when I had composed myself and wiped the grin off my face.
It’s sad to say, but Monkey had it coming. He really did. He likes to push Prince Charming’s buttons and he knows exactly what to do to get a colossal reaction. We never want either of them to hit, but I think a point was made in that moment. Don’t mess with Grumpy Badger when you have pissed him off.

After that incident, I reintroduced the protective cup to Monkey. I figured it was the perfect moment, especially because his next karate class was the following afternoon. He seemed excited to try it out!
He got home from school the next day and I had him change into his karate gi. I took back out the cup and explained to him how to wear it. It looked humongous and I had no idea how he was even going to sit while wearing it. It struck me as comical.

It’s almost as if I somehow turned into a silly, giggling teenage boy in that moment. Everything just became funny. I know, I know. I may have potentially given him emotional scarring...but thankfully, I don’t think I did. He ended up catching my case of the giggles and he laughed right along with me.

He’s so skinny that the straps that go along the back of the cup just hung from his backside. He had saggy straps. Again with the laughter. Bad mommy!
Once it was on, he resembled Zohan. You remember that character that Adam Sandler played? Oh boy. Biting my lip didn’t help. More laughter. I am so bad.

Adam Sandler in You Don't Mess With the Zohan

Then, as we tried to get his pants on, the waistband wouldn’t budge over the mound of the cup. I was almost in tears with my laughter as I tried to untie his drawstring and loosen the pants up enough to get them on. Thankfully, Monkey was still laughing with me.

We got the pants on and started to tie up the gi and the belt when he decided he had to go to the bathroom. Of course. Of all the luck! I’m dying now at the absurdity of the whole thing. I helped him get out of his outfit and he waddled in to the bathroom. I gave him a moment of privacy to get back into his cup and his pants.

After a minute or so, I walked by his room to check on his progress. He was standing there naked except for his cup, actively punching himself in the groin. I mean, he’s wailing on himself. I opened the door, surprised at what I saw.
With a beaming smile he said, “I can’t feel the punches! It doesn’t hurt one bit!”

And, I lost it again. Between my peals of laughter, I redirected him to put his clothes on and stop punching himself.
He was so happy, he was literally bouncing around the house. He enjoyed wearing his cup to karate and the boys all had their moments of pretending to be hurt and rolling around the floor in fake groin pain. I was the only mom there that day, and the dads and I all had a good chuckle over our boys' antics. We even talked about that banner moment when a boy discovers the benefits of a protective cup.

Later that night as the boys got ready for bed, Titan saw Monkey running down the hall toward the bathroom, naked and in his protective gear. Thank God I didn’t see it, or I probably would have launched into another silly laughing fit. I know. Pathetic. But hilarious.
Titan told him he couldn’t wear his cup to bed, as he had hoped to do. Apparently the cup became his new favorite thing and he wanted to wear it all the time.

Monkey gave me a lot of laughter that day. It still makes me smile to think about it. I wonder when the novelty will wear off. In the meantime, I’ve learned that protective cups are fun for boys. And, funny for moms. Don’t judge me too harshly.     

Wednesday, September 26, 2012

It could always be worse!

This is what I told myself in the midst of doctor-visits-and-medical-mystery-a-palooza over the summer.  

It could always be worse!

Everything seemed to go cuckoo with the boys’ health toward the end of the summer. Nothing was clear cut about their situation, and no one seemed to know what was going on.   
The boys both had weird skin lesions that developed a few days after coming back from a camping trip. We did everything humanly possible to figure out what could be going on. Was it contact allergies? Were they bug bites? Was it some other condition? We had no idea and neither did the doctors. And after several days, when Monkey seemed to be getting better, Prince Charming was much worse and literally swelling before our eyes.

No one could tell us what was going on. The pediatrician didn’t know. The doctors at a second clinic didn’t know, even after 3 hours of them talking, researching and conferring with other doctors in the practice. No one knew.
Even after 10 (yes, TEN!) vials of blood taken between the boys for tons of tests, no one knew. (Getting the blood draw is a whole other story that requires consumption of a stiff drink – or several – before I am able to speak about it…)

The skin issue remains a mystery to this day, but thankfully the rashes are now gone. After about a week of not knowing what to do, making lots of phone calls, visiting various doctors, and doing endless research on the internet, I figured out a simple cure without any help from the doctors.
The secret is activated charcoal! I stuck a little pile of charcoal on top of the lesions and covered them with a bandage overnight. By morning my swollen Prince Charming was much less puffy. It was a messy miracle that took about 2 days, cost all of 3 bucks, didn’t hurt, and didn’t have any side effects. I wish I had figured it out sooner!

In and among the mystery skin issue, we were also dealing with some additional symptoms and concerns in Monkey. Cardiac symptoms.
Yes, you heard that right. In particular, tachycardia. If you are not sure what tachycardia is, it’s when the heart rate becomes accelerated for no apparent reason.  

You could have knocked me over with a feather when we figured out he was having heart issues. It was so unexpected.
When it first started happening, we thought it might have been an upset stomach, possible cold/flu, or even food poisoning. I was starting to feel like I was on Dr. House’s team with all of the research and differential diagnosis I was attempting.


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Each time Monkey would get his strange symptoms he seemed to recover quickly (within minutes or hours). There was only one time that his symptoms lasted for more than a day. He never developed any other symptoms of illness. It seemed strange that he apparently kept coming down with something but then the sickness never materialized. We knew something was up.
It was by accident that I figured out his heart was racing. From that point forward, we began documenting all of his symptoms and even found an app for our smart phones that would monitor heart rate. Then we got in to see a pediatric cardiologist.

Never in my wildest dreams did I expect one of my children to have a need for a cardiologist!
She sent us home with a portable heart monitor that we used to record any incidences as they occurred. Monkey was still being monitored when school started, so then I had to have a long discussion with the school nurse and his teacher to go over the details of the heart monitor in case he had tachycardia at school. What fun.     

After all of that, and a couple of visits to the naturopath, we still have a lot of questions about the boys’ health issues over the summer. We don’t know exactly what happened with either of them. We don’t know if the skin issues were related to the cardiac issues. We don’t know if any of the symptoms will come back.
The cardiac symptoms began going away once I started on a supplement protocol given to us by our naturopath to help Monkey’s immune system, focusing heavily on natural anti-virals. I did that for two weeks and as a result he stopped having his cardiac episodes.

We had a follow up appointment with the pediatric cardiologist to go over the heart monitor results. I reported the information about the naturopath’s treatment protocol and how the episodes tapered off and then stopped. Much to my surprise, she told me that since the naturopath’s protocol seemed to work, I should immediately begin doing it again in the future should Monkey’s episodes return.
What? A mainstream medicine person agreed with my naturopath and that natural methods worked and should be used again? I was happily shocked. Usually, information like this is met with disdain in the traditional medical community.

In our first visit with the cardiologist, she said there was a chance that his heart symptoms were being caused by some kind of virus. We were never able to pinpoint an exact virus from the myriad of tests run with the blood draws. So, she felt that success of the anti-viral supplements through our naturopath proved that Monkey’s heart issue was definitely being caused by some unknown virus. And, it could happen again. So, I will keep anti-viral supplements on hand for such an occasion.
All of this is to say, that during this time of health uncertainty, I really felt the stress of not knowing what was wrong and feeling helpless to fix it. Keeping that in mind, I know that it can always be worse.

Someone else always has a worse situation than you.
I better understood that I should not take my boys’ good health for granted. They have come a LONG way in their journey with autism and are much healthier than they were when they were younger! We have made a lot of changes, including the GFCF diet and proper supplementation. My boys are better because of it. I recognize that my life is much different now than it otherwise would have been had things not changed and I hadn’t been open to visiting a naturopath and doing other sorts of non-traditional treatments.  

During this time of concern over the summer, I really began to think of everyone I know that has dealt with things far worse than I can even imagine as a parent. I have friends who have children with Down syndrome that have dealt with multiple heart surgeries in their babies. I have another friend who had a child born with a significant heart defect, and right after her baby had a procedure to essentially re-build his heart, their apartment burned down and they lost everything while their son was recovering in the hospital. I have friends who have children with autism that cannot speak and still wear diapers at ages 8, 10, or even 16.
I can think of tons of examples of families that have a different experience with their child, and in my mind and my own experience it seems almost too difficult to imagine. What I’ve dealt with in my own boys is much more challenging than many of my friends have had with their children. But, we all deal with the cards we are dealt.  

We all have different experiences, challenges and triumphs. All we can do is try to do the very best we can in each moment of crisis or moment of joy. The boys’ health scares over the summer really brought that into focus for me.
I am so thankful for everything with my boys. Even though things have been hard in many ways, they’ve also been so wonderful in others. I am grateful for the path we are on, despite the twists, turns and brick walls along the way. I am also keenly aware that it could always be worse, and I’m exceedingly glad that today is a better day.    

Monday, September 10, 2012

The saving grace of going back to school

When summer draws to a close and school starts again, I think what many of you do:

It’s the most wonderful time of the year!

 
I crack up whenever I see this video!

How did your summer go? Did you survive? Did your children survive?
We did okay. Not great. Not horrible. Just okay. Prince Charming lost his ESY (extended school year) services. Monkey somehow managed to keep his ESY, although they cut his hours in half. I’m sorry, but 12 hours over an entire summer isn’t super helpful. Whatever. That’s another conservation for another day… We happen to love our ESY teachers, and something is better than nothing.

Last spring I found a local Groupon-type deal for a beginner’s karate class and thought it would be a perfect summer activity. It would be a good, healthy, and inexpensive way to add a routine to our summer schedule. At the beginning of summer Prince Charming was dying to go and Monkey would launch into tears at the mere mention of it. My how things changed once they started going to the class! Monkey enjoyed himself immensely and managed to earn his white belt. Prince Charming refused to participate and would launch into a meltdown at the drop of a hat. And, that’s one more conversation for another day…   
Despite summer preparations including a newly defined reward schedule, a list of expected behaviors, and lists/charts around the house for regular routines, the break from school was not easy. It never is. I did my best to set things and prepare so that the summer would be simple and straightforward, but life has a way of changing things up sometimes.  

In fact, we saw some significant regression over the summer with Prince Charming. The words, “I told you so” (directed to the school district in regard to their removal of services) come to mind. His sensory system became quite a bit more reactive, and I found myself needing to equip him with a sensory toolkit just to leave the house each day. We haven’t had to do things to that level in a quite some time and it was disheartening to see him react so easily and quickly escalate into meltdowns.
The boys also found their brotherly voices over the summer break. And by brotherly voices, I refer to their constant bickering, yelling, screaming, fighting, kicking, and general disdain toward one another. The silver lining to that cloud is that it is all very neurotypical behavior, so I had to remind myself of that as I could feel my head wanting to explode repeatedly.

As summer wore on, there was a general shortening of my fuse. At times I possess a large amount of patience; other times, well…not so much. I have been told by parents and professionals on various occasions that they are impressed with my patience and calm demeanor around my kids when they are acting up. I am no saint, that’s for sure.
I found myself getting irritated more quickly and the general noise level began to really bother me. My house has never been a quiet place, but during the summer ear plugs should be standard issue.

Needless to say, my nonprofit work and blog writing came to a grinding halt. You may have noticed I was almost completely absent here on Caffeinated Autism Mom during the summer months. Now you know why. I can’t write or work in a chaotic environment. My brain doesn’t function that way. I can only filter so much and then at a certain point I just can’t do anything productive.
During the summer I actually had my first migraine in years, and there were also a couple of multiple-day headaches thrown in there for good measure. At a certain point I became ugly mommy with a bad attitude that could raise her voice at the drop of a hat. I’m not proud of that. It’s not a shining moment for me at all.

I hadn’t truly realized how much my attitude had changed until one day things were particularly rough. The boys were bound and determined to fight like cats and dogs and I had simply had it. I was DONE. And, I yelled. Loudly. In no uncertain terms, I laid down the law and separated them. Since they obviously couldn’t be near each other without having a problem, I took away that choice for the afternoon.
Later that day in a quiet moment when peace had been mostly restored, Prince Charming came to sit with me and said that he was looking forward to school so that I wouldn’t be mad anymore.

Knife to the heart.
Within the same hour, Monkey told me that I needed a break. He then told me that when he and Prince Charming started back to school again he thought I would be happier. That effectively twisted the knife.

I felt as small as a gnat.
I took each of the boys aside and apologized for my behavior. I talked with them about why I was having a hard time and what they could do to help so that we could all be happier.

School started the next day. I did not do a celebratory dance or take a nap or eat a bucket full of chocolate. I felt sad. I was relieved for the quiet, but I was sad that our summer ended the way it did. I can’t fix it or make it better. I can only try to do better next time.     
I will tell you that I noticed an immediate shift in my demeanor. When the boys got home from school, I was eager to talk with them about their day. I was 100% clued in, sharing the moment with them and truly happy to hear all that they had to say. I could feel my blood pressure lower and my jaw un-clench. My joy had returned, and it only took one day with a 4-hour break from the boys to do it.

It really is the most wonderful time of the year.   

   

Wednesday, August 29, 2012

Coffee Karma and Espresso Excitement!

If you have been on the Caffeinated Autism Mom Facebook page recently, you may have seen my post about making a "Poor Girl's Iced Latte" at home. When you don't have a lot of cash to go out to a coffee shop and you no longer have an espresso maker, you learn to improvise.

I used to have an espresso maker (two, actually), but unfortunately both machines ended up breaking. I had a well-known brand, but apparently the quality was just not there. When the second machine gave up the ghost, I opted to live without an espresso machine from that point forward. That was about 4 years ago...maybe more.

Well, I must have put out some major coffee karma into the universe or something, because I got a call from a dear friend of mine who knew that I did not have an espresso machine and she had one that she never uses. Actually, it belonged to her husband, but you get the drift. She said that her husband had set it aside for me.

Can you say jaw-dropping moment?

YESSSSSS!
Thankyouthankyouthankyou!!!
IloveyouIloveyouIloveyou!

She met up with me last night and gave me her barely used, commercial grade, high quality, supercalifragilisticexpialidocious espresso machine.

I am in seventh heaven! I think it's all I babbled about with my hubby last night. He may have asked me at some point in the evening if I was going to blog about it. He doesn't need to know that I had already started typing the post when he asked me the question. I claim innocence. He doesn't know me that well. I'm an enigma. Uh-huh. Sure.

I can't wait to read through the manual (yes, I will actually read the manual). I will also lovingly clean and de-scale the machine, go buy some espresso grind coffee, and then take this baby for a test drive.

I can hardly believe a gorgeous Breville machine is sitting on my kitchen counter right now!!! Someone may need to pinch me.

www.brevilleusa.com
 
If you missed my Facebook post, here is how I made my
Poor Girl's Iced Latte:

Brew a pot of your best coffee (preferably made with filtered water).
Simmer it slowly in a saucepan until it reduces to about 1/4 of the original volume.
Refrigerate the concentrated coffee in an airtight glass container.
Pour some of the concentrated coffee into a large glass.
Add ice and coconut milk (or your choice of milk) to taste.
Enjoy!

I hope you have a great week and are able to enjoy some good coffee! *clinking coffee mugs*

Friday, August 17, 2012

Honorary Aspie: Amelia Bedelia

I wrote this post about 2 years ago for another site and thought I had already shared it with you here on Caffeinated Autism Mom. I was telling someone about my Amelia Bedelia post, and when I got home to try to find it, it wasn't here! So, I am very happy to share this post with you because I had intended to do so a long time ago! Better late than never, right? Have a wonderful weekend and enjoy what's left of summer!
-Angela


Amelia Bedelia: A fun perspective for daily life on the spectrum

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When I was young, I used to love reading Amelia Bedelia books! Peggy Parish created one of my favorite fictional characters, and the antics of Amelia Bedelia always made me smile. A housekeeper by trade, she humors the reader with her literal interpretation of instructions. Her employer begrudgingly tolerates her quirkiness, and after a series of mishaps, all is forgiven after the first bite of one of her culinary creations. Whenever she blunders, her amazing skill in the kitchen is her forever saving grace.

Last spring I introduced my oldest son to the Amelia Bedelia series of books. He immediately took to them, and loved the books almost as much as I did – although I don’t think he understood the humor to the same degree. In particular, he derived a lot of pleasure from quickly saying her name over and over again. I think he liked the way the words felt on his tongue and in his mouth as he quickly said, “Amelia Bedelia.”

After our visits to the library over the summer, I would listen as my son read the books aloud in the car on the way home. Recalling her various escapades from the recesses of my brain, I remembered how Amelia Bedelia blissfully marched to her own beat. She was always innocently ignorant of when she was committing a mix-up that created chaos for others. No matter how much trouble she got into, she was always forgiven and loved. Her amazing desserts also went a long way to soothing frayed nerves!

When asked to “dust the furniture,” Amelia Bedelia thinks that it’s strange to dust the furniture, as she would rather than “undust” it. So, she finds the “dusting powder” in the bathroom and proceeds to coat the furniture and floor with the powder so that she can cross “dusting” off her chore list. Or, when she is asked to “draw the drapes” she finds a sketchpad and tries her best to draw a picture of the drapes.

Amelia Bedelia’s daily journey of literal misinterpretations of common phrases and idioms, and the reactions they receive, are indeed humorous. However, there are some parallels between the experiences she has in her books, and the experiences some kids on the autism spectrum have as they navigate their way through the social waters of life.

Those of us with verbal kids on the autism spectrum, or with an Asperger’s diagnosis, are quite familiar with the lack of social tact or understanding of anything that is not fully definable or concrete. If only these real life misunderstandings were as funny as Amelia Bedelia’s! Most spectrum kids really don’t “get” the complex gray areas that abound as we go through each day. Their literal translations of life situations are easier and much more logical for them to process.

Amelia Bedelia also brings to light the importance of having a usable and desirable skill, like her ability to appease her employer with a lovely dessert after coming home to a disaster she created. I fully believe that finding a special talent in each of my boys will aid them in their social experiences in and around school. For socially quirky kids, honing a desirable skill that successfully sets them apart from others will also hopefully aid them as they become employed adults.

So, I guess that in an elementary way, Amelia Bedelia helps to give a glimpse into the mind of these complex kids…if only for a moment. I nominate Amelia Bedelia as an honorary Aspie! Do I hear a second nomination?

Wednesday, August 8, 2012

Wordless Wednesday: Air Show!

Last month I was invited to participate as a vendor at a special needs VIP event on the day before a big military air show. Not only did I get to go, I was able to get permission to bring my boys, my husband, and Miss C! The weather did not cooperate and a good portion of the show was ultimately cancelled, but we still had a lot of fun!

In the hangar before the air show, we were hanging out at my vendor table waiting out the weather. The Thunderbirds jets are behind the boys.

Miss C had just helped the boys get pins on their coats from the Thunderbirds flying team. Men in flight suits everywhere...
She was loving the scenery! ;-)

I saw this sign and had to take a picture of it! It says:
WARNING
Restricted Area. It is unlawful to enter this area without permission of the installation commander. While on this installation all personnel and the property under their control are subject to search.
USE OF DEADLY FORCE AUTHORIZED
This area is patrolled by military working dog teams.

And, I HAD to get a picture like this! Monkey is such a rebel. Well, insomuch as his mommy forced asked him to pose this way.  

Friday, August 3, 2012

Flashback Friday: Teachers need to know!

It’s August! Have you thought about your kids going back to school yet? Have you starting shopping for school supplies?

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I had the opportunity to speak about autism with some college students studying education. We got into a nice discussion about how parents communicate with teachers. What was reaffirmed to me that evening is the absolute importance of parents communicating with teachers. It’s critical.

You are the expert!
Let me repeat that. YOU. are. the. EXPERT.

I mean it!
Your child may be surrounded by therapeutic and education experts in the school environment, but you are the expert when it comes to your child.

Use your voice. What you share about your child can better equip the teaching team to be successful in working with your child.
One of the best ways to start off the school year is to write a letter of introduction about your child. I do this every single year for both of my boys. It’s an excellent practice to get into, and I guarantee the teachers appreciate it.

Take some time and think about your child – their strengths, triggers, calming strategies, etc., and then write it up in an email or a letter to their teacher, or drop it off in person at the school. By having this information ahead of when the students arrive, the teacher will have time to review the information as they plan their classroom for the fall. 
Check out the post I wrote about this last year and get started on your child's letter of introduction. It's definitely worth the time to put it all together!
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