Friday, May 29, 2015

Who will love me for me? - prison of Autism

Sip of strong coffee (hot, bitter and with a drop of delact milk of course!), work emails read and replied to, reports checked, kids fed and dressed.   Jambalaya telling me she may throw up - that's what every parent working from home wants to hear, knowing there's so many things pending on the business side... Yup, she was right :( Poor baby girl must have eaten something bad last night. At least Booboo is all ready and happy.  Much calmer after just one day of Valerianaheel drops - praise God for homeopathy :)
Since it looks like my chatterbox stays home with me today, I need to play some calming music to keep me sane :) Yes, it is unlikely but I promise I will try...

Awww... "What love really means" by JJ Heller  (<-- link to the song)... Man,this song has so many layers. It made me think of all the people I care about that are desperately willing to be loved for who they are. Big gulp tightening my throat as emotions flood through me and tears start flowing down my face... This song has been such a blessing to me and really made me re-think how I treat Michael. God has given me some additional verses to this song to make me realize how Mikey feels... and how desperately he needs our love - not for what he's done or what he will become but for who he is. The way Jesus sees and loves him. Unconditionally... He doesn't have to be a preacher or a doctor or even a football/ baseball player. God made him perfect and has a purpose for his life WITH autism. Perhaps God will heal our boy and puts autism in remission like He did with so many other kids and adults on the spectrum... If yes, it would be wonderful, if not... we will keep on trusting Him and His perfect plan.

I love you Mikey...





Prison of Autism




He cries in the corner where nobody sees
He's the kid with the story
No one would believe
He prays every night
"Dear God won't you please
Could you send someone here
Who will love me?"



Who will love me for me

Not for what I have done

Or what I will become

Who will love me for me

'Cause nobody has shown me what love

What love really means



He wished he could speak to express all his thoughts,
all desires, all dreams, even what was wrong...
He cries every day feeling misunderstood:
"Dear God, make them realize
I would if I could!!!"



Who will love me for me

Not for what I have done

Or what I will become

Who will love me for me

'Cause nobody has shown me what love

What love really means



He’s trying so hard to control all the things
“They’re so easy for them, then why not for me?”
He hears all the sounds even louder than them
But they judge and they mock when he’s overwhelmed…



Who will love him for him

Not for what he has done

Or what he will become

Who will love him for him

'Cause nobody has shown him what love

What love really means



He screams when he hurts, When the pain is too much
He thinks “God, won’t you please, make everything alright?”
He looks at the kids – they’re so happy and free
And yet he is in jail of his own disease…


Who will love me for me

Not for what I have done

Or what I will become

Who will love me for me

'Cause nobody has shown me what love

What love really means



And when night gets dark and his day almost done
He looks up, he looks down, he looks all around…
He sees his dear mom and his dad all apart
“Maybe if I wasn’t here, they would be alright?”


Who will love me for me

Not for what I have done

Or what I will become

Who will love me for me

'Cause nobody has shown me what love

What love really means



One day God looked down and He smiled seeing him
He was running around laughing, chasing the unseen
He stopped little boy and looked deep in his eyes
Then kissed him and told him "son, you'll be alright"



And He said “I will love you for you

Not for what you have done or what you will become

I will love you for you

I will show you what love

What love really means

 ......
I'm finding myself at a loss of words. Can't wait to run to my boy and give him the biggest hug ever  and tell him how much he is loved and what a blessing he's been in our lives! 
Mikey and the sea - liberating calm in overwhelming world of Autism


Thursday, May 14, 2015

Love with capital "L" - parsley, ancient city and CD player

Mmm, the smell of blackcurrant tea and delicious crispy protein bar full of nuts, fruit and some other healthy stuff. Yummy! As I felt piece of blueberry on my tooth, my mind drifted back to 2004...

I was in a need of a decent laptop to write down my very complex life story.   I didn't know any companies specializing in these products, so I asked my manager and a good friend, if she could recommend any, since her laptop was first class.   She then found some leaflet and handed it to me saying it's a solid distributor (and American!), so I should be able to find something decent, meeting my expectations.  Little did she know, a year after that purchase inquiry, I would be marrying my sales person :)  Yup, Mark showed up with my laptop and neither of us talked much about computer's specs, but rather our interests, like and dislikes etc... Mhm, I got a special deal: "buy one, get one free" haha. I bought  a laptop and agreed to be asked out on a date to T.G.I. Friday's.   Obviously I had to very carefully choose my meal there, as I didn't want to eat something heavy or causing any gastrointestinal issues. Duh!  The best choice was a very safe, or so I thought, chicken salad.   To be honest, I don't remember much from that date, and it's not because I was under influence of any sort of substances, although I was under a spell of a tall, handsome American dude...  All I remember was "parsley"!!! As we got our food, we were being all sweet and charming, eating tiny bites, chewing carefully, laughing a lot, sharing things about each other... and of course, what's the number one thing that attracts the opposite sex? Smile! But of course!   I could not stop smiling, and was really fluttered that Mark seemed to notice it.   But after a while of his eyes fixated on my lips, I felt a little uncomfortable.   Mind that it was our first date "out" (our first first date was when he invited me to his church!).   He smiled and looked me in the eyes, and said these famous words that caused permanent "amnesia" in my mind :) "Ula, although we've just met and don't really know each other that well, I believe you would appreciate the honesty and me saying what I want to say without any circling around the subject"... I blushed and thought "man! this guy is a real macho! here comes cliche 'I LOVE YOU'. Just say it and let's get it over with!". And he did! Well, not quite these words. It was more of: "You have a massive piece of parsley on your tooth. If it was me, I would also appreciate your honesty to spare the embarrassment for me".   As you can imagine, I wanted to be swallowed by the ground or become invisible.  My tomato red face and I asked to be excused.  I walked really fast to the restroom and looked for the windows, to escape that hall of shame :) Typically, no windows available, therefore I had to get back to my seat with crumbles of dignity I had left.   I honestly cannot recall that evening's conversation.  The only word still ringing in my head is PARSLEY... Oh well... We agreed to forget about any leafy vegetables when we were eating out.

I knew from that day that he is the one for me.   OK, and he knew too much about me AND saw my defiled smile.   He could either marry me or go missing in unexplained circumstances... I'm still happily married :)

I remember having a really bad day at work, feeling hormonal and snappy when Mark asked me out to dinner. Mind that because of the medication I was on back then, I developed a tremendous lack of confidence.   I didn't want to go to public places where there were many people, as I felt they were all looking at me and probably mocking (all in my head!).   Mark was brave enough and didn't get discouraged by my behaviors.   We ordered some Mexican food and as we were about to eat, he stood up and went to the car saying he had to make a call!  I felt like Daniel in a lion's den :) Of course that put me in an even worse mood.   When he came back all weird and absentminded, I immediately asked to leave.  I had had enough!   So he respected my wish and promised to take me to my place.   I noticed he took the wrong exit and drove towards the sea and ancient city of Amathunda.   In my sick brain, I figured he did it on purpose to get me more upset, as a payback for ruined dinner.   As he stopped the car, the moon reflecting beautifully in the water, gentle breeze outside and not a living soul around, I gave him "the look".   If eyes could kill, Mark would be "no more" :)  I had no clue what he was up to.  There he was, all romantic, trying to pick up the pieces of a disastrous date and his girl resembling an ancient dragon, with nostrils like butterfly wings, grinding her teeth, making her rather full lips practically disappear in tight gin ... If I was a guy, I would run like Speedy Gonzales, while there was still time :)  You can imagine, it was not an easy setting for a gentleman...
I know, I was a terrible creature. But I blame it on my meds ;)


Mark was driving an old Honda with no music player, so he attached his CD player to the radio via long cable. He started playing "our" song which made me suspicious... Why, oh why, would he do that?!  As the music played, our car doors opened so we could feel the soothing breeze and sea air, Mark had spoken :) "Ula... do you remember when you asked me if I thought you were the one for me, for life? Well... I don't." - that's all I've heard. My brain exploded. I've never been more humiliated in my life! OK, I partially deserved that as I had not been a very nice person, especially that evening. So I'm sitting there feeling completely numb, tears flowing down my cheeks, anger and frustration blending with sadness and huge loss and I see Mark getting out of the car. As he moved, his foot got tangled in the wire connecting the CD player to the radio. All I could see was a CD player flying high in the air, smashing into the ground, followed by Mark tripping over the wire, then kneeling down to put the pieces together, getting back in the car and putting on "our" song again. I was in shock. I was searching for energy to punch him in the face for this insult but could not feel my arms. The next time I opened my eyes I saw him by my door, kneeling down on one knee with a small white box and the most beautiful diamond ring a girl could dream of.   My brain registered  "will you marry me?" somewhere between the lines. I regained consciousness and managed to say "yes" :) After dust settled, Mark asked why I reacted that way to his extremely romantic proposal.  Apparently my brain froze and I missed the "good" part.  After "Ula... do you remember when you asked me if I thought you were the one for me, for life? Well... I don't." there was "I don't think. I KNOW you are the one for me and I cannot imagine my life without you, therefore I would like to ask you a question"... We laugh even now.   But like I said in my previous posts, we could not possibly have a regular life journey. From the very beginning, God made sure we would experience some most bizarre and ridiculous things, always random and filled with slapstick humor.  the way we met, our dates filled with parsley, marriage proposal, wedding vows, having a baby and forgetting the "hospital bag"etc... We love it!

So now, after this reminiscing, you can better understand why our kids are the way they are :) They simply have no choice having us as their parents, right?

Now on a serious note, it is really important that parents of a special needs child will keep their romance alive.   Actually, it applies to all parents.   In a rush of daily work, stress and kids, we tend to forget about Love (purposely spelled with capital "L").  Statistics are brutal. 3 out of 4 marriages with kids on the Autism spectrum end up in divorce and father leaving home.  It breaks my heart.  Every child desires to grow up in a complete family with loving parents who show, through their own example, what Love really is.   Are we a perfect couple that never argues or have different opinions on things? Absolutely not! But we do work on our marriage and our secret is "Love God before anyone else and keep Him a central Person in your home".  It works!

Have a fantastic day and never jump to conclusions before you hear the whole sentence ;)  
Love and peace
Till next time...

Friday, May 8, 2015

Hiking and Father's Day Adventure

Looking back... as I listen to the song in the background of a tribute video I put together for my precious boy, I get a big lump in my throat. If I was a song writer, this would be the song!

Enjoy watching "The Beautiful Face of Autism - Mikey Joe

Yup, counting my blessings one by one... It's good to do the stock-take every now and then ;) we had so many great moments together that easily overshadow the bad memories.

Tomorrow we'll be doing our weekly hike in the mountains... That is always an adventure. I remember very well our first big hike around Mount Olympus. We were told that it's a very picturesque walk that makes a perfect circle around the mountain - starting and ending the trip in the same spot - HA!!! It was 2 years ago, Booboo was 6 and Jambalaya not even 3 years old. Knowing how much Mark loves adventures and hiking, I decided to surprise him with backpacks filled with healthy snack and drinks to last 3 hour hike, or so we were told!

All excited we drove up the mountain on a gorgeous, sunny day... Up there it was cooler than by the sea where we live, so it was really pleasant to walk. We parked our car in a shade, under the tree and started our hike. How wonderful. How splendid! One thing our friends were right about and that was the most spectacular views and tranquility all the way... As you can imagine, 6 and 2,5 year old troopers got tired after first 20 minutes of our walk. No biggy, we can make a short stop to refuel our bodies with some sausage and water...

 As we stood up to keep going, our little princess asked if we're "almost there" cause her legs were getting tired!!! We knew we had ahead of us at least another 2.5 hour walk but as we all do, we answered in a quite convincing manner "YES, almost there". Mikey asked to be picked up and carried in Daddy Bear's arms and I had to do the same with Vivien.

Even if they weigh less than 20 kilos, if you have to carry them in your arms for several kilometers, your arms faint pretty fast. We kept going, changing the ways we carried them - letting them sit on our shoulders, carrying them piggy back style, carrying them in the front, supporting their backside on our palms (that's a killer one right there!) and eventually making them walk despite pain.

 After about 3,5 hour walk and going through all our snacks, we stopped even noticing amazing views around us. All we wanted was to get to the car as soon as possible, hoping we would see it behind the next curve. Another 2 hours passed and sun was setting down... Kids were crying and begging for mercy - literally. And so were we. I'm pretty sure I was speaking in Polish to vent my frustration and pain that was piercing my calves and thighs. Even my hips and back hurt! I was willing to stay under the open sky, just sit in the middle of the path and risk being eaten by Troodos mountain wildlife :)

Mark was walking faster in hope to see our car and to shout back to us that he found it. That would be nice. But we're not an average hiking team. We had to keep walking... It was really odd that throughout the entire walk on this trail we have passed just one couple who was walking in another direction. We felt like in Twin Peaks or something. Mysterious trail where people disappear... Finally we heard some cars on the road, so we knew we were close. What a relief that was. As we walked toward the setting sun and got extra power to speed up with both kids on our shoulders.

You can imagine our shock when we got to the road and didn't see our car. No, it was not stolen.  It was parked 5 kilometers up the mountain on the way to Olympus... Yes... the vision of walking up the road with two hungry, extremely tired kiddies did not turn us into kind and sweet best friends. Hissing and growling could be heard as we kept crawling up. At some point I was hoping that at least one of the passing us cars would stop and give us a lift to our car. Not a chance! My legs rebelled against me and I just sat down on a big rock holding my two sleepy babies. Mark turned out to be a hero that saved the day, as he walked up the hill, alone, despite excruciating pain in his legs. He found our car and drove down to pick us all up. I've never been more relieved in my life. As tears of joy flowed down my face, kids immediately fell asleep and Mark turned to me, smiled and said "never again!" We could not move for 2 days. And we were in pretty good physical shape before this adventure  :) So what did we do the following weekend? Yup, you got it! We went hiking again but this time we took the right trail. And  that became our new family tradition...

Looking forward to see what tomorrow holds! :) Aaaah, this time Bonnie goes with us ;) more fun!

Have a fabulous weekend and make some memories with the people you love! God bless xx





Bilingual home with countless "Autism" Rules broken

As I looked at my "love tribute" to Mark that I made for one of our wedding anniversaries, I realized we could not have a "neuro-typical" proper life.  It was predestined to have it all other way around, as we have always been the crazy kids on the block. Although I grew up in reserved Poland with Catholic background and Mark in good ole' South, USA in a Baptist community, we could never fit the little square boxes of conventions. I was a rebel since my early childhood, raised in a socialist "Polish People's Republic", where sharing your faith and believes in public could cost you your job, prison or even death in some extreme cases.   I was only a few years old and was proud to tell other kids about the love of Jesus, sharing all Bible stories I've heard in my "religion" classes. Especially sharing them with my friend who was a daughter of the biggest communist in militia back home. I had no fear (or understanding of the consequences), so I was teaching her all things I've learned - like the model prayer, all about the angels and heaven and what God did for us because of His love... She then asked her parents if she could start attending my religion classes.  Oopsie daisy :) Yup, I caused some trouble every now and then. I could never sit still and watch TV, like my kids can nowadays... Partly because "kids' programs" were not available 24/7. We had like 2-3  channels and kids could watch cartoons on Saturday and Sunday morning till 10-ish and then "goodnight" story for 20 min after evening news section. And that was it! So, like most of you, I spent my days outdoors. I found it easier to play with boys rather than other girls. I always loved climbing the trees, playing cards, not so much playing football, but doing all other things that were far more fascinating than changing clothes of our dollies and playing tea parties... As a teenager I was the one "saving" my class from big tests by acting in a really dramatic way (and yet very believable) acute appendicitis and other medical emergencies :) May God have mercy on me haha. School nurse got to know me well by the end of my school years. But I also went to hospital and was willing to go through all kinds of nasty and really uncomfortable procedures just to avoid going to music school (my violin lessons)... So yes, not an average Joe. Mark had similar character and knew he had to do more than what was offered to him in his community. He came with his parents, who were missionaries to Cyprus, as a young boy and practically grew up in here, surrounded by multinational culture. He never had problems making friends and, like me, he wanted to share the gospel with anyone coming his way - always with a great sense of humor. I remember the story he shared when his best friend came to his house for a meal. Mom cooked some delicious food and everyone ate with good appetite. Then when Mom left with all the dishes, Mark said very loud "this is so rude of you! Why would you say that my Mom's food is horrible?! I can't believe you". Poor guy turned red and was ready to strangle Mark with his bare hands. :) Although we were raised in two completely different environments, we were so alike. And then when we finally met, we knew from the beginning that was IT :)
To cut the story short (finally!!!)
We fell in love, got married twice (to each other!) and then stork flew over our house and dropped our Mikey first and then 3.5 years later his baby sister.  We're a Polish - American family living in Cyprus, having great friends from Israel, Lebanon, Russia, Cyprus, Greece, Romania, Austria, Philippines, UK, Sri Lanka, Holland, Germany etc.... We're truly blessed. And so as a young mommy, I was talking to my baby boy both in Polish and English, until I went to work when Michael was one. Then it was more difficult as I didn't have much time with him. One and a half year after that we had first ASD diagnosis and suggestion from pediatrician to limit communication language to just English :( It hurt me (and still hurts) that my language was put on the side track as less important. I know if we were living in Poland it would be different, as we'd be surrounded by this language. In Cyprus official language is Greek (but of course! - "give me any word, ANY WORD! and I will prove that its root is in Greek!" - quoting from the movie "My Big Fat Greek Wedding"). All doctors are Cypriots, public schools are Greek language based. We had a big problem. There were even some suggestions that we should learn Greek and speak in Greek at home, so that Mikey could go to public (free of charge) school one day and to know Greek by default. Sounds crazy now but back then we were considering all options. We found private English kindergarten and then school, so problem was solved (although a very costly solution to language dilemma). Funny enough, Mikey shows great interest in foreign languages. He loves the sound of Chinese, Hebrew, Arabic, Greek and Dutch. At school he's writing his name in Greek alphabet as if it was no biggy... This boy is full of surprises, no doubt!
Bilingual parents, multinational friends at school and in church, Polish grandparents who took an effort (in their mature age!) and studied English for several years, in order to communicate with their "foreign" grandkids (sigh)....
Psychologists and all the smart medical professionals seem to be on the same page regarding limiting communication language to just one (English). The same rule applies to calling Michael by his name, not to confuse him. Ha! Now that would be easy if we were "normal" parents obeying instructions coming from professionals. As the natural born rebels without a cause we cannot conform ourselves into small boxes of conventions :) We both make up words and nicknames for all the members of our family. It's impossible to just have one name and one nick. So our poor boy on the spectrum knows (and likes) all his nicknames. And, what puzzles the medical world, responds to most of them :) In my craziness, I tend to forget that when picking up kids from school, I should call their given names. And then I see surprised faces of other parents when I call my kids by their nicks... Some of them are really bizarre:
Booba Boobela - female form of the original name Booboo (origin: Yogi and Booboo Bear)
Sillina - combo of the English word "silly" and Polish ending of female names "na"
Grumpelstinsky - nick for Daddy Bear ;) I don't think it requires further elaboration ("-sky" is a typical surname ending of Polish Americans immigrants)
Floopy doopy doo with occasional moderation of Floopidy Floop Floop and Flopster
Dziumbellina (pronounced: joom-bellina) -  no real meaning but sounds cool
Frompiduria - again, totally made up word
Occasionally we throw some random Greek words like "glikaniso" (γλυκάνισο) which means aniseed. I know! Couldn't get more ridiculous :)

To sum up - there's this magical beauty in our multinational existence and bilingual family with crazy made up dictionary that keeps our Autism reality that much sweeter. Since we cannot change circumstances, we can and we most definitely will change conventions and words we use.

What's the recipe for happiness in our crazy household?
1 American stud
1 Polish female rebel
2 Polish- American kids
handful of humor
1 tsp of seriousness
10Tbsp of craziness
pinch of sadness and trials
a whole lot of Autism
and all marinated and cooked in pure organic faith

That would be all, folks! Stay tuned and send me some comments ;)
Love and kisses...
God bless each and every one of you