May14

Having Nana For Dinner?

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Having Nana For Dinner?

Saturday, I was telling Gabe, that we were having Nana for dinner on Sunday. As soon as those words came out of my mouth, I began to giggle. I knew exactly what Gabe would say next.

Me: “Gabe we need to clean up, we’re having Nana for dinner tomorrow”

Gabe with a startled look of disgust on his face and a gasp in his voice. “We’re going to eat NANA?!”

Me: “Well Gabe, what I meant to say was, Nana coming over for dinner, because it’s Mother’s Day tomorrow. Mommy is going to make Nana dinner.”

The other day it was Ian not being specific enough. Saturday was my turn.  Poor kid was truly mortified for a minute, but it was sooooo very cute.  He is really loving Voltaire’s CD, “Spooky Songs for Creepy Kids.” I guess singing about cannibals really got to him.   Oh how my kids make me LMAO… ;)

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May14

Natural Grape Trellis… The highlight of my Mother’s Day

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Natural Grape Trellis… The highlight of my Mother’s Day

I had a wonderful Mother’s Day. I played in the mud with the kids aka worked my butt off in the garden. I made BBQ dinner for my beautiful momma, and my mother-in-law, Mimi. Everything came out delicious. We had beef ribs, that I slow cooked all day before grilling with my homemade sauce, homemade potato salad, caprese, avocado salad, and grilled shark. .Such a super laid back meal. It doesn’t sound like it… but it was. It was just such a pleasant day. No care’s in the world… other then my trellis.

I am so thankful that I have a strong and loving women in my life. My mother, my sister, Lala, Mimi & some really amazing friends. Being a mother is such a powerful role. There are a lot of things I know I am good at, or would be good at. But when it comes to being a mom, nothing else compares.  The world is full of good doctors, lawyers, engineers, but I feel that being a good mother…. ahhh now that is hard work.

I’m especially lucky to have wonderful mother in-law. So many times, there is much grief between the significant other and the in laws. I have come to the conclusion that much of it caused because  of the different family culture. Not here. I absolutely adore both my mother in law & father in law.  Heck, if wasn’t for Mimi, I wouldn’t  have met my husband or had my two beautiful little boys. (another story for another time) Come to think of it, I adore their parents too. I’ve said it before, and I’ll say again, I couldn’t have dreamt of a better family.

Mom & Lala. I wouldn’t be who I am or the mother I am,  today with out the two of you. If you two are reading this, I love you. You mean the world to me.

I spent my Mother’s Day weekend, preparing the garden.  All day Friday & Sat, I was pruning back our trees, planting okra, tomatoes, and cucumbers, lettuce, spinach, and of course mowing & weed eating the lawn. Sunday, we finished our trellis (made from those branches we pruned) and planted our grapes.

Of course we had neighbors stopping by, asking what we were up to.  Most likely they were thinking, “What is that crazy family doing  this time and with that  horrid mess in their yard?” Though, I hated having to explain myself. I  kinda enjoyed bantering with them about the need for conservation, the pros of companion planting, victory gardens, planting techniques in general, being self sufficient,  and possibly putting up a stand so the boys could sell produce.

I just hope the grapes thrive.  I’m thinking they will. Almost everything we plant in our yard, does amazingly well.  We still need to plant the black berries, melons, potatoes, and zucchini and I’ll be done.  Well almost done. I still need to lay down mulch. And instead of a dozen roses, Ian order for me some apple & peach trees & rugosa rose bushes. I’m super excited!

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May9

Trashy Laughs

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Trashy Laughs

Not a very long post, but a super cute one. Yesterday, Gabe was helping his dad clean his office. Much to my surprise he was actually being pretty helpful, and Ian being very patient.

Ian, “Gabe take the trash out and bring me back a bag.”

Gabe,”Here dad!”

Ian was rather proud that Gabe fallowed directions, until he realized it was wet, smelly and he’d gotten coffee ground all over him. Gabe dumped the trash out in the bins outside, like Ian had asked, but he brought the dirty  bag back to him. We were all laughing hysterically. How the comedy fills my life.

Lesson: Be very very very specific with a child who has Aspergers. Assume nothing. And don’t forget to laugh.

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May5

Organic Gardening On It’s Way

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Organic Gardening On It’s Way

Well, I am behind in my planting as usual. Last year I didn’t even get started until June. So I am diffidently farther along this year then I was last year. Last year, we were stilling taking the boys to therapy 4 times a week. This year, I was in the hosp. It so got behind schedule.

Last week, I tilled up a spot in my back yard for the strawberries & thyme,trimmed hedges, pruned some trees, and finished weeding out all the flower beds.

Today was a long one. I got a lot done, but there is so much more to do. I’m rather proud of myself. I planted: the three sisters (corn, squash, & beans), thyme, mint, basil, rosemary, cabbage, collards, beets, and carrots,re-tilled the garden,  cut down more branches, and started putting together a natural trellis for my grapes. I thought I had enough branches. Wrong again.  I only had about a third of what was needed. So, I guess I am going to go branch hunting this week.

I still need to plant: black berries, grapes, tomatoes, okra, cucumbers, water melon & cantaloupe. I am hoping to get those done on Sunday. Hopefully, I’ll finish mulching the flower beds next weekend. I am looking forward to planting peach, apple, & cherry trees, asparagus, and roses by the end of Spring.

Kinda disappointed about the roses this year.  I wanted to fence the front yard with Japanese rose bushes. I bought some seeds, and not one them sprouted. I did a little research about rose seeds. They said to,  place the seeds in a bowl of water. If they sank, they were healthy seeds and if they floated, they were not going to germinate. Well of course, all 500 floated. I still tried to get them to grow. No luck.

So what’s the purpose to all my madness?   The core of my being  believes in self reliance. Independence, is the only means to achieve freedom. That, and I love victory gardens. They are both beautiful and utilitarian.

 

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Apr28

Good News

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Good News

As some of you guys know, I was hospitalize for having 3 large clots in my lungs. They found out I had yet another congenital disease. This one, is called Factor 5 Leiden.   One of the first things I did when I got out was to have the boys tested.  Drum roll please! They were NEGATIVE!!!

It was the best news I’ve had all month. I was really excited to hear this. Aspergers and all that comes with it, is enough. So, I have one less thing to worry about them.

As for me, I got to see the hematologist, and I’ve had a shit load of genetic testing done, and I still have to see the genetics counselor.   I’m taking heparin shots every morning, which isn’t too terrible. But going from a girl that never bruises, to bruising all the time is rather annoying. I mean I guess it could be worse, I could not have survived those clots.

With my down time, I finally filed the boys SSI, my SS-DI, and HIPP.  I am just now feeling well enough to hit the gym. Hopefully I can last. I’ve been missing being at the gym something fierce.

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Apr18

Busy Spring Break

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Busy Spring Break

Wow. This has been a crazy spring break for us. The past two weeks, we have hit the beach with family, my sister was in town, we visited the in laws, several cookouts, fishing, a few birthdays, Autism 5K, a trip to DC to help our friends move & to visit my brother’s family, a baby shower, and a going away party.

It’s super wonderful to have such a large family. For the most part we are rather close, but at times it can be rather daunting.  My family is more of a clan, per say. I can’t even begin to tell you how much I love them all.

Socially my kids… they have a hard time. I really believe having such a large family has helped them out in so many ways. Despite every event brings about 2-3days of  melt downs that fallow shortly after. I suppose, one could argue, that the chaos that is my family, isn’t the trouble that it is worth.  I can’t deny that  sometimes, it does feel this way.  I wouldn’t change it for the world though. The boys have 5 uncle,4 aunts, and about 17 cousins, their grand parents, and great grand parents. It’s like having extra moms,dads, brothers, sisters, and best friends. All  have taught my boys: how to get along in the world, to have compassion, strength, pride, and courage. It is rough enough raising two boys with Aspergers. I can’t even begin to imagine raising them without my clan. My boys are so very fortunate, as are the rest of my nieces and nephews.  I couldn’t have dreamt of a better family, even if I tried.

 

 

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Apr8

Huntington’s Disease?

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Huntington’s Disease?

Not too much gets me down for too long. My mother in law just informed me she h found out that her grandmother died from Huntington’s disease. So this would be the boys maternal great grandmother. Apparently, there is a 50/50 chance for any child to have the disease or to pass it on. To my knowledge my mother in law is fine.

Huntington’s disease scares me more then autism, bipolar, open heart surgery, pacemakers, diabetes  & factor 5 combined.   While the others are scary enough, they are manageable. It’s not easy.. but you can deal with them and survive. Huntinton’s, there is no cure, no medicine, no technology and there is a rapid decline. Starting around the age of 40, and rarely do the sufferers of HD last more then 15 yrs after they start displaying symptoms. 6% have juvenile HD.

So of course, I had to see if there was a link between autism & Huntington’s disease. It looks like they are studying this currently. Apparently normal developing children who regress into autism have an increased chances in having Huntington’s Disease as well. Which makes me question doctors. They say that there is no rhyme or reason for Autism. I would think that if they test our children for any of the other neurological/biological disorders that are associated with Autism when they first get diagnosed. They have a better understanding for the cause of Autism in some children.

I feel the same way with Factor 5 Leiden. Sure it’s rare. But I think that it, as well as the other factor clotting disorders should be tested before a woman gets put on birth control. I mean if you know it’s exist, and you know that birth control can cause clots or even death in women who are positive for these factors, one could assume that you should do blood work before you prescribe anything.

In May, the boys are going to be tested for Factor 5 Ledien, perhaps they can look for Huntington’s Disease as well.  I really hope I am worrying for nothing. We have more then enough of our share of problems.

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Apr3

As a parent of children with ASD, do you ever wonder if you have Autism too?

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As a parent of children with ASD, do you ever wonder if you have Autism too?

I’m just curious. How many of us parents question whether or not we’re on the spectrum too?  Ok.. I am going to make a general statement, and probably stick my foot in my mouth. To the people that know me, know that I sorta do this from time to time. Well, ok…..a lot.

I’ve noticed throughout the community there is two very distinct sides to parenting children with Autism. One, a very confused, angry, a lack of understanding to “why” their kids do what they do, a sense of morning towards their abnormal child. And the other who, while not happy per say.. but they get their kids. There are stresses, but the anger and mystery just isn’t there.

I tend to subscribe to the second.  In fact I find most of their antics to be rather funny. It really doesn’t even dawn on me that what they are doing is so abnormal unless it’s being pointed out. Outside from the horrible meltdowns. I do tend to make lite of the situation. While my humor isn’t for everyone, it does make me wonder about myself.

There is no doubt about it. My life isn’t  normal, by any means, not even in our sex life.  I am being dead serious. For as long as I can remember, I’ve been pretty cynical about my assumption of people.   But I truly don’t get most people. Not even my family. While I love them dearly, and I know they love me. And I try really hard to understand where they are coming from. I just don’t get a lot of things. It’s the subtle things, like jokes or phrases. It’s very hard when the boys ask me, “What does (insert phrase here) mean?” Because 9 times out of 10, I don’t know. I tend to say, “let’s ask daddy” or “let’s google that.”

I tend to stare… and I mean a lot. I was worse when I was kid. It’ only been sense my kids were born that I have tried to be aware of it. I can now sorta tell when I am absent and say, “I’m sorry can you repeat yourself.”  About 40% of the things said to me,  literally sound like “wonk wonk wonk wonk.” The louder things get the less I hear. Honestly, I kinda assumed no one noticed. And the only reason I know, is because I can feel myself not being there.  My husband and my kids who have pointed it out to me. It’s more like..”geez Zoila.. they are yelling at you, don’t you hear them at all?” or “mommy look at me in my eyes” or “Zoila.. Zoila.. ZOILA did you hear me?.” I am horrible about paying attention to someone if I don’t get their eye contact. And I generally don’t look at others eyes, it’s their lips. I do look like I am a great listener.. but it’s all show. Kind of like a cat. hahaha

Things, like smells will instantly make me sick. Anything from  being nausea, throwing up or  immense hatred for the source of that smell. Yes, hate. Honestly a lot of people stink to me. It’s not their body odor, or perfume, though a lot of the time it is perfumie stuff. Most people smell well……disturbing to me. I can’t even begin to explain it, they just smell off.   Light & loud noises.  Bright lights generally make me pretty angry pretty quick. Loud noises usually make me stare. I try very very hard not to get lost in the sauce…. but inventively I do.

One of my age old habits is cocooning myself in lots of blankets at night. I always assumed it was because I was cold. It wasn’t until I tried my boys weighted blanket and felt immediately calm. I didn’t realize I wasn’t calm.. but I sure felt super calm afterwards. Most recently I’ve gotten into wearing corsets. At first it was for the sex appeal. But as soon as I put it on, I realized it had the same calming effect as the weighted blanket.  It’s weird, but it makes me feel connected and put together and  all there. Again, I didn’t realize I felt disconnected.

I also tend not remember most people, places, TV shows, or movies. I can’t even begin to tell you how many arguments I’ve had with Ian on which movie he claims we’ve seen together, or the things we’ve done. I swear to God, I never heard of it. And that goes for a lot of shared memories with him as well.  I know I have met some really wonderful people through out my life, but I couldn’t say who, what, where, or when. Only that there is a reminiscence of good people.  Unless someone is in my life on a regular basis, it is out of sight out of mind. Quite Literally.

My sense of time. This is the worst. Something has to be really traumatic or super exciting for me to recall it. Even then, not so well.  I tend to joke that I run on Aztec time. What time is it? “I donno.. let me look at the sun”. When are we going to eat? “I donno.. when it feels like dinner time.”  I really have a hard time with the actual time itself.  I can’t begin to tell you how many appointments I’ve missed, came a day early, or a week later. It’s really embarrassing.  I have gotten slightly better thanks to google calender. I have it set up to send  me alerts 24hrs, 4hrs, and an 1hr before I need to be anywhere. I even write things down several times and I still forget. An hr, a day, a month, a year…… it all feels the same to me.  It’s kinda why I don’t blog as often as I should. For me it was just yesterday.  I never really wake up with remorse or longing of my past, because frankly I either don’t recall it or it felt just like an hr ago. So, sure I have a positive outlook on life…. it’s because I am rather indifferent to most of it.

My filter… isn’t the best. I generally don’t mean things to sound  awful. I’ve noticed a lot of people assume that I am being funny, but I just think I’m being honest.  And when I am trying to be funny.. it can be a little mean. I know it’s sorta fopa to make fun of my Aspie kids… but I am not even sure why that’s the case.  I find most of the things they do to be hysterical.

I guess, what got me thinking about this, was the other day when Gabe told my mother he didn’t like her laughing at him.   I looked at Gabe, and said… “it’s ok honey, I have a hard time figuring out if someone is laughing at me or with me too.”  Gabe looked at me, “Mom do you have Asperger’s too?” “ummmmm I donno… I wouldn’t be overly surprised though.” I mean what can I say.  Nope Mommy is just eccentric but you’re autistic? And that’s just it.  I have always just assumed I was a little eccentric, a little bohemian,a little quirky, a lot spacy and attributed much of it to my artsie-fartsiness.

I know I can’t be the only parent who wonders about their oddities.  I know I do. There are shit load of other things, I do. That’s for another time. Autistic or not. I am just glad I get my boys. I am happy that I don’t have a sense of mourning for what this supposed normal life is suppose to be like.  It’s not easy… but I don’t think I could handle the pressure of being “normal”, hell just being polite is hard enough for me.

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Mar21

Survived pulmonary embolisms.. and I’m happy to be alive

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Survived pulmonary embolisms.. and I’m happy to be alive

This past week has been rather stressful. For those of you who don’t know. Sunday, I went into the ER because I thought I had pleurisy.  I’ve had pleurisy at least 4 times now. It is so very painful and it takes the fun out of breathing.  Over the years, I’ve learned the signs. I try to head them off if I can. Actually, I felt it Saturday afternoon, but I wanted to wait it out. My inhaler wouldn’t work, nor did the ibuprofen. I figured it was time for antibiotics, and I probably shouldn’t wait until Monday.  I’m so very glad I wasn’t overly stubborn and took myself in, this time.

Well after being at the ER for about 4hrs, and my X-ray were negative, they decided to do a CAT scan. It’s was unlikely for me to develop clots, but the doctor said, lets just do it just in case.  Unlikely my ass! I had 3 moderate to large clots stuck in my left lung. When he told me this, I felt the blood drain from my face. I am not to boo-hoo type of girl, more like the Indian tears type. I felt the one tear run down my face and was immediately thinking the worst.

They pumped me full of heparin,  rat poison, and sent me to the hospital.  I spent 4 days being utterly bored out of my mind. To be honest I felt great. Which made sitting still all the worse. Ian was amazing. He made sure I wasn’t too bored and brought me: beading supplies, art supplies, made sure I had the internet, and of course brought me sushi when the food was bad. It’s a lovely thing, being married to your very own hero.

I was a bit of a conundrum for the doctors. I have none of the risk factors for blood clots. I don’t smoke, take birth control, no recent surgeries, no atrial fibrillation, I exercise, eat rather healthy, and I’ve had no DVT (deep vein thrombosis). They did an echo of my heart and they thought they saw a clot on one of my leads to my pacemaker. This was probably the scariest of my days spent at the hospital.

So Monday morning, I went under a TEE, basically I had to swallow a large cable. This didn’t go so well. Well it did, I was just freaking out internally the whole damn time. I had ask the doctor if it was one my old leads, and he said probably not. Who do think was right, the doctor or myself? Of course I was right! The TEE showed that the supposed clot was one of my old leads left in my heart from when I was a child. I was immediately relieved when they told me this. But still no real answers to how or why I formed these clots in the first place.

They drew a ton of blood to make sure I didn’t have a continental clotting disorder.  My grandfather on my father’s side died at a really young age because of clots. So, there maybe a connection here.  The pain I felt this time wasn’t as intense as the first time I had pleurisy. I half way wonder if this hasn’t been a problem my whole life, but they blamed the symptoms on my heart.

I was release Wednesday and had to go right back to the ER on Friday. I was severely dehydrated. My legs were switching, my chest felt worse, dizzy and nausea… lets just say, it wasn’t a pretty site.  I felt pretty awesome once they started getting fluids in me. It’s Tuesday, and I still don’t quite feel as good as I did before all of this. I am half way wondering if it’s not the coumadin they put me on.  The good news about going to the ER, was they told me WHY I was producing clots.I have something called Factor 5 Leiden.  Only something like 5% of all Caucasians have this congenital disorder, and only 30% of that 5% produce clots. I mean really born with 3 wholes in my heart, open heart surgery, pacemakers, hoshimotos, migraines,not to mention all my sensitivities, and quirkiness,  wasn’t enough now Factor 5 Leiden. Seriously, 35yrs ago, I wouldn’t have survived any of this. I’m an anomaly. A freak of nature.  Lucky fucking me!  All joking aside, I am a lucky girl.

Healthy people have no idea how easy they have it. I try not to be too resentful. I know most of my health problems are due to the fact that I was just born this way.  Oddly enough, rather then having a whoa-is-me attitude, it has made me very resilient and oh so  happy to be alive.

You know.. I always say,”It could always be worse.” It’s times like these that makes me want to dance, laugh and enjoy the little time I have left in this world.  So if come off as bit eccentric, now you know why. Or at least one of the many many reason I don’t give a damn :)

I may not have the perfect family or friends but they sure as hell are wonderful. Thank you, everyone who showed their love, sent me warm wishes, called, ate a salad with me,  played a game a cards, or just to stop in for a hug. You guys kept my spirits high. I can’t even begin to explain how much it meant to me. I love all of you so very much.

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Mar8

It’s that time of year again, Sonny’s shedding…. eeekk!

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It’s that time of year again, Sonny’s shedding…. eeekk!

Sonny has a full blow out at least 3 times a year. I mean the normal shedding is a lot. These blow-outs are insane.This vacuuming several times a day, freaking stinks.  So right now, Sonny looks like he has mange, and  my floors  look like they are coming alive. If only I new someone who could sew with it. I get at least 3-4 shopping bags full every time I brush him during this time.

Normally he has no problem with me spraying him down the waterless shampoo that helps his hair shed. I was kinda wondering why he was trying to move away from me. Guess what I did? I sprayed him down with Apple Bitter. Not once, not twice, but at least 4 times! *facepalm* Damn you advertisement with your bottles having the same colored labels.  I guess he should be all right?

 

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