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

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...

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

Cats are autistic

A-chew! Allergy season in upon us... Love working from home when I move my office to veranda, under big umbrella... Sip of refreshing (always room temperature!) water and a quick bite of banana or apple - whatever is available.  Most of you are probably used to drinking freezing cold water, even with added ice to make sure it's extra cold! And you call me a weirdo? It's a pure logic that when temperature outside is getting hot, when you drink cold beverage it makes your body sweat more, making you feel discomfort of the heat even more, as you get dehydrated (through perspiration) and eventually more thirsty, 15-20 minutes after  you drink :) Mark is always making fun of me when I ask for a hot coffee or tea on a blazing hot Summer day. Or eat a nice light soup (boiling hot of course). He cannot fathom that... And yet when I drink hot drinks and eat my hot meals (both spice and temperature wise) I don't sweat much and my kidneys are smiling back to me with a happy "thank you".

Allergies are the plagues of 21st century, huh? Whoever I talk to, is allergic to some sort of food, pollen, dust, animals' fur etc etc... The list of things that cause allergies is long. And we can deal with them in many different ways. Sure, the stronger the allergy is, the more vast the treatment should be. My allergic reactions result in skin rash and gastrointestinal cleansing :) But when others react to allergies with difficulties in breathing (asthma like symptoms) then it's not so funny. Our boy has severe allergy to olive trees, dust and dust mites. Plus he's sensitive to gluten, severely allergic to casein (yellow cheese specifically) and possibly to animals' fur? We're still waiting to run these tests as they are not covered by insurance. But of course :) It would be really sad if results showed allergy to my 2 stinky cats or cute Bonnie. And if they did, what then? Ahhh, I will think about it tomorrow, as my favorite character (Scarlett O'Hara) used to say.

They are my personal assistants, as I do my work - Bonbon resting under the table with her snout on my feet, one cat heating my lower back and the other on the chair next to me. They have a lazy but happy life... Maybe not enough walks recently, as Bonnie wanted to have puppies and we had male dogs camp set right in front of our gate.  Some of them were really faithful and determined. Camping even in the rain and through the night, the others coming in hope that the magic gate will be open... She was impossible to walk through the village, as all her "fan club" was following us, which made me wanna carry a rifle and try some hunting :) She's now 20kg (almost Michael's weight) puppy and very  jumpy. But she cannot get the idea that fields are for "doing her business" and not the house! I took her for a long ride, several hours for sure. She drank a lot of water, as she was thirsty, so I knew she was dying to use the bathroom, or whatever dogs do :) She held it in. I took her for a long stroll around the village and she was pulling me towards the house. As soon as we got home, literally exhaled and stained my living room floor. Ahhhh!!! This dog,yet she's the sweetest dog I've ever met. She's very good with kids and she's so loyal and loving. And treats my crazy black cats as her brothers, and vice versa. They are part of our crazy family. Although she was not trained to be a therapy dog for Michael, she is a natural. But surprisingly, our boy bonded more with the cats. I guess it's because cats are autistic too :) Seriously. Try calling them by their name - non responsive. Try encouraging them to eat good food in a classy manner, from the bowl, resting etc. Hahaha - there's snatching chunks of meat and running to hide behind the corner to eat like a caveman, making growling funny noises as you come near. They avoid eye contact, yet they love being shown love and affection, but only by those that they choose and grant permission to :) they are super smart (like Garfield) and very demanding. They get bored easily, so you need to come up with new games that they'd find interesting. They rock! Both kids and cats on the Autism spectrum...

Stay tuned folks! Would love to hear some feedback from other autism parents and not only :)
Love and peace

To medicate or not to medicate, that is the question

Nightmare got me up before the alarm clock came to greet me with a kiss and a hug.   She was still fast asleep in her "Clemson Tiger" bed and as I turned around and saw my Snoozosaurs (both of them) in their usual morning position - diagonal with mouths open, breathing peacefully with an audible "eghhh -  phatatatatata, eghhh - phatatatata".    I knew I was the only one up and still reliving that horrible dream which brought back fear about my family's well-being and nearest future.   I rushed to the bathroom, splashed face with cold water, looked in the mirror, sighed as I saw my morning face and quietly walked downstairs to put the kettle on.   I turned on the Wi-Fi (we always switch it off for the night to limit radiation in the house when we sleep) and scrolled through Facebook posts - all same, nothing new, more bad news from Nepal, Israel, Syria, Yemen... Then some new reports on yet another medical/ scientific research proving definite link between mercury & vaccines and Autism and other developmental delays and neurological damages.   Closed Facebook and news as all regrets and bad memories flooded back like a sticky bubbly mud - I still cannot forgive myself for not listening to my gut feeling when we took Michael for his MMR vaccine and then Hexa. He was not 100% well when he was jabbed with this lovely cocktail of different viruses preserved with Thimerosal. I trusted medical professional who after a brief check up decided that since he didn't have any fever, he was strong enough to receive his immunization, as scheduled.   Oh, how I wish I knew then what I know now!   But that's why I started this blog in the first place - to share my mistakes but also the good things that have been helping my boy after the MMR and Hexa fiasco.

As I said before, I am not against vaccinations but everything in moderation, as they say, and definitely check what is being injected in your little ones - better to pay a bit extra and get separate vaccines for each virus rather than risking taking the lethal combo.   That's my opinion.   Another big factor that pediatricians tend to overlook is kids' health when they come for their jab. Even a small congestion, or as Brits call it "a sniffle" can be dangerous and lead to neurological disorders, developmental delays and yes, to Autism.   P.S. I vaccinated both my babies, but with my baby girl I took extra precautions, as I had already educated myself on the risks and side effects of immunization.  But that's another topic.

These things made me think of all the meds Michael has been on, throughout the years. And again, I don't say you should say NO to any conventional medications your kid would be advised to take, but based on our experience I am going to share my view on medicating in general.

As we visit new doctors and specialists we discover new things that are "wrong" with my boy and we are being offered a "solution", or a quick fix - medicate and cover up the symptoms, so your kid will act more like other neuro-typical peers. And when you listen to all the knowledgeable specialists from around the world, and you value their experience in medical profession, you naturally tend to follow their advise.   And why shouldn't you!  Doctors swear to help patients and not harm them after all.  So, we listened to the fantastic sounding option of putting Mikey on "very mild" norepinephrine reuptake inhibitor to supposedly treat his ADHD.  May I take a deep breath again... Always, always and let me say again - ALWAYS read and educate yourself on medications' side effects, how long they've been in use, study cases (if there are any, as most of the drugs prescribed these days are too new to have scientific proofs of no life threatening side effects in long run) of patients who took these drugs as kids and are now perfectly healthy adults with no damage to their liver, lungs, brain, bone density etc... I learn the hard way!

This brings me to the story I wanted to share.   It was a lovely Summer day and Mark and I had our date, going out for lunch to a nearby Mall. Kids were at their grandparents, as school was finished for the semester. As we were on our way, we received a call that Michael had twisted his wrist pretty bad.   So we rushed to the clinic and saw our poor little guy all pale and with his wrist misplaced.  As we were waiting for the X-ray we found out that because he had recently eaten, he wouldn't be operated on for the next 6 hours or so!   And because arm was broken in 2 places he would need to go under full anesthetic, therefore no painkillers allowed!   Those of you who have kids on the spectrum understand what I mean. Terrified little fella, not able to communicate with words, not understanding what's going on, and 2 bones broken in a really nasty way - definitely causing a tremendous amount of pain.  To cut the story short, he has never been put to sleep, never been operated on and definitely never encountered such trauma.  I need to mention a miracle that we witnessed as we were holding our boy in our arms in the hospital room, rocking him and humming his favorite tunes... Mind that he had not been given ANY meds that could take some pain away for 8 hours!!! We were praying like we've never prayed before. People around the world who saw our post on Facebook started a prayer chain and were sending us encouraging short messages.  We looked at Michael and his face brightened up with a gorgeous smile, as he was playing with daddy's phone, waiting patiently for his surgery.  It was as if he was given some powerful pain reliever or something, but it was power of prayer and merciful touch of God. It gave us so much courage as we felt this peace in the room. Then I had to use my Autism Mama Bear's techniques to prepare my baby boy for a surgery. I knew he was terrified as he was brought to this cold septic room. Doctors and nurses were trying to chase me away, which turned me into a Grizzly in a split second. They knew not to mess with a crazy lady :) They allowed me to get in the operating theater and talk to Michael as he would be given anesthetics through the breathing mask. I was holding mask and was explaining to him what it was for and how to take a deep breath... He was fighting as he didn't want the mask on his face. So I took it and put close to my face and smelled cherry like aroma - yup a sniff of good ole' anesthesia haha. After seeing me do that, he agreed to place mask on his face. It took a few seconds before he was completely under and then I was asked out. Fair enough. He had 2 big nails (stitches) put in his bones but doctor didn't want to put his arm in cask as it was surgical wound which could get infected if kept under plaster etc. 
We came from hospital keeping an eye on our very inquisitive boy, who was determined to get the bandages off to look at the wound. During the day the"chase" was easy but nights were a different story. One night he came to our bed with no bandages and his palm loosely dangling as he held his hand up. Both Mark and I jumped and rushed him to the bathroom to put the bandages and the semi cask back on. We still laugh and get nauseous at the same time remembering that night. We both looked at each other, then gazed at Michael's flopped hand, and felt blood leaving our body making us dizzy and close to fainting. Mark was literally green on his face and his pupils so huge that I couldn't see his original eye color. I had to lie down on the cold tiles on the bathroom floor myself to catch breath and gather the last bits of energy within me and put bandages back on our very chilled patient. It was the worst! The reason I made this long introduction was to show the iceberg of it all. His arm was freshly broken, he had 2 long nails keeping his bones together and started a brand new Summer school/ Intensive Therapeutic Camp in a completely unknown environment in the University Camp. 
1) traumatic experience + recent surgery + pain killers
2) change in routine + new place + new people (therapists/ psychiatrist / psychologists) 
3) rooms cramped with other kids on the spectrum - some more severe cases than others
4) being watched/ observed and given regular food that Summer School menu provided (gluten bread, cheese, fries and gummy bears as reinforcement) hmmm... 
I wonder why Michael had been so hyper back then... Aha! Not so much because of Autism, but because of ADHD!  But no worries, there are wonderful meds, "fairly" safe for kids to tame these symptoms helping a child to focus and sit still for a longer period of time and thrive academically. Of course we tried these drugs and noticed some improvement - especially academic side. But after about 3-4 weeks we noticed worrying side effects - Michael stopped eating (classic anorexia), stopped sleeping, feeling more anxious and possibly hallucinating. He developed dark shadows under his eyes and his skin was pale despite being in the sun a lot (Summer). We were told to keep going as these side effects could easily be treated with another antipsychotic drug with a long list of side effects. It put a red light in my intuition and again URSA - the Autism Mama Bear was awaken and ready to attack.   I had long discussions with many specialists (which I still value as great professionals in medical field) and tried to convince them to help us find a less invasive, alternative treatment that would actually cure the core of the problem and not be just a quick fix. So this is how our ways split, as psychiatrists firmly believe in treating a problem and I believe in curing a patient - even if it takes longer.  So that's why I tend to exhaust all bio-medical remedies first, before I reconsider administering conventional chemical treatment. 

So to answer the question "to medicate or not" I would say "it depends on individual case". Quoting Temple Grandin: "There are way too many powerful medications with severe side effects casually given out to young children. I am very concerned about possible long-term damage to the child’s developing nervous system.  This is especially a concern when  powerful antipsychotic drugs are given.  They may cause tardive dykinesia,which may cause permanent Parkinson-like shaking. For more complete information on medications you will need to read the medication chapters in the 2006 edition of Thinking in Pictures and the 2010 2nd Edition of The Way I See it. In young children, it is usually recommended to try interventions, such as special diets first, for treating behavior problems that are related to autism"

Be safe and God bless each and every one of you!

Morning routine, coffee and love

Ahhh... heavenly smell of freshly made coffee, a drop of delact milk and voila! I can enjoy my day now :)
I was asked about routine for our Autism household and how, in general, our day goes by.   Hmmm, that's not as easy to answer as I have thought.   OK, in general our life is rather chaotic to say the least, although we tend to stick to our self-occurring routines, especially in the mornings.    Let's take today as an example.   Around 4.30am we felt our little boy climbing into our bed and finding comfort between my husband and I (this has been going on for years - on and off, but recently more on rather than off :)).   Knowing I would have to get up, pick my 25kg (55 pounds) bundle of joy, walk around our bed trying to squeeze through a tiny gap between our bed and chest of drawers, carefully passing long legs sticking out of the bed (my original bundle of joy is over 2 meters tall - 6'8") and carry Booboo all the way to his room... I thought to myself "look at him sleeping so peacefully with mouth wide open, producing sweet little snoring sounds, having REM as he was obviously dreaming about something - perfect copy of his daddy :)... Ahhh, he can sleep another hour or 2 and so can I!".  I don't know about you, but my mind never rests.  As I started thinking of all the things I would have to do to move Michael and then thinking how little time I actually slept, and how my body needs rest and how people can't lose weight because of lack of sleep etc etc. I felt tired just by my thoughts marathon.    Knowing it was almost time my alarm would go off, I was getting even more anxious and frustrated cause this mama bear NEEDS SLEEP!!!   Sure enough, alarm came and wiggled her way into our bed.   Mhm, our baby girl (now almost 5) sneaks into our bedroom everyday around 6am ready to conquer the world.   Yup, to give you a better idea although we have a rather big bed, I feel like a winnie sausage trapped between two precious heaters :) One snores,the other wiggles and hums cute yet annoying, especially in the early morning, tunes.    We take turns who takes little alarm tune machine downstairs to prepare her "chocolate milk", pack school lunchboxes, squeeze fresh juice to detox our bodies as a kick start of the day and put on a kettle for delicious coffee for mommy and daddy :) No, wait!   That's only when it's mommy's turn to go downstairs at 6am :) Daddy bear simply drags his body downstairs following a skipping, cheerful monkey who doesn't stop talking, unless it's a break to sing, then it's back to talking.   There is some water boiling in the kettle as I can hear the whistle and few seconds of silence, which could only mean our baby girl is missing or she's tasting her chocolate milk.  While she's enjoying her morning drink, boosting her energy (I know!!!), mama bear and baby boy are still resting in bed.   Today I actually dozed off after the other two went downstairs and I woke up 20 minutes later - still tired.   Now I know why, cause there was no whistle, ergo no chocolate milk.   It was 7:08am and we had 22 minutes to feed the flock (kids and animals), pack their lunchboxes, fix some food for us, make fresh coffee, forget the juice - we're so late!!!
I dragged Michael off the bed, walked him to the bathroom and made him do the usual routine ("pee pee in the potty", wash his hands and face and walk him - with his eyes still closed - downstairs to our living area.   I saw daddy bear stretched on the couch, impatient ballerina watching a "turkey movie" (really funny one actually) and demanding chocolate milk, Michael circling around me like my very own satellite asking for "tatti" (probiotics in a form of white chocolate - very useful) and sausage (good source of protein).   Cats outside going crazy, waking up the entire neighborhood, our poor little Bonnie (1 year old labrador) still curled up in her chair waiting for the magic gates to be opened and food poured into her bowls... realizing it was 7:23am I started pouring cats' food into kids' lunchboxes. Kidding!!! No, no. I was tired and knocked out by allergy meds I had taken previous morning but I packed the right food into each box, fed all my dear creatures - including daddy bear and myself , gave Mike his breathing treatment and done! Sure there have been some hissing and growling along the whole frantic morning but we managed to deliver kids to school on time! Yey :) So there you go! Our  "routine".   Of course it varies but in general that's how our mornings look like.  I noticed Michael is confused when we are on holidays and not because of different location but because we're relaxed - IT'S NOT NORMAL :)  I must say though, that recently, even if things were not prepared for school or coffee made, Mark has been letting me sleep in or should I say, rest in bed for extra 20-30 minutes, taking the duty of coming downstairs with a chatterbox upon himself :)   So yeah... as difficult and frustrating Autism can be, if you have the right people to share it with, you're alright.  God brought us to it and He will bring us through it.   I see things a lot more clearly these days.   It's not by coincidence that we were blessed with this special boy, whose soul is so pure and innocent that he cannot see any evil in others.   Will there ever be a cure for Autism?   I don't know.   Until there is one available and effective, I will stick to the tested things that work for us - diet, love and most of all - GOD.   He knew us even before we were born.   He knows our every thought, He sees our tears and wants to share our burdens...  It's up to each and every one of us if we allow Him to carry some of the weight that's pulling us down.   He promised in Matthew 11:28-30 (KJV):
²⁸ Come unto me, all ye that labour and are heavy laden, and I will give you rest.
²⁹ Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.
³⁰ For my yoke is easy, and my burden is light.

As I sip my morning coffee and getting ready to start my work day, I lean on Him and His promises.   Not once has God ever failed us.   Not once!   Hope you all have a blessed day and find sweetness in the craziness of autism reality.   
P.S. Coffee is cold.   How long have I been writing this? Seriously!!!