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
Wednesday, April 29, 2015
Monday, April 27, 2015
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!
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!
Friday, April 24, 2015
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!!!
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!!!
Thursday, April 23, 2015
Autism Diet
Frustrating to say the least! I've been trying to make this blog all fancy shmancy and as I saved changes it deleted one of my posts - the one on the Autism Diet. How convenient, eh?
So without further ado, I will just write the advise from our friend who has worked out this diet, experimenting on himself, modifying it,until he perfected it to the point it is now. When we stuck to it over the Summer we saw huge improvement in Mikey's overall behaviors and focus. He was verbalizing his wants in a much calmer manner, he didn't suffer from any digestive issues and he slept through the night! So here it is folks! Quoting our dear friend...
All food, ideally, to be organically farmed or wild.
Water for drinking & cooking to be carbon filtered.
All baking to be done in a pot with a lid at 160C max.
Salt - sea or mountain salt.
Cook in morning for whole day (I am still struggling with this one) :) Food cooked earlier in day to be brought back to boil before eating. Food to be eaten warm, never too hot or cold.
Do not overeat! One large bowl max. per meal. Ensure the same quantity of food is eaten at each meal. Meals to be eaten on time or early, never late, in a quiet, relaxed environment, no reading/ TV and preferably in the company of others.
No mental activity immediately after food.
All vegetables must be fresh and firm with absolutely no sign of mold or even softness. Peel all vegetables where possible if any chance of pesticides etc. Use sea vegetables if available.
Essential daily components:
1. Protein - it is essential that protein is consumed for breakfast!
2. Bone broth- simmer very low cut bone, cartilage, tendon, skin (e.g. spine, feet, ears, tail, head, knuckle, rib, neck) & salt for 48hrs, strain, leave liquid to cool & store in fridge for 1 week or freezer for several months. Add to cooking daily!
3. Lard and Ghee (clarified butter) - pig leaf (kidney/ loin) fat, slice thinly & simmer for several hours in salted water, strain, discard solids, leave to cool & store in fridge for up to 2 weeks or freezer for several months. Add to cooking daily!
4. Raw garlic 8 cloves & ginger 1 large finger - chop & leave to sit for 15+ minutes before adding to food after cooking (MORNING ONLY).
5. Cinnamon - add up to 1/2 tsp per day to cooking or drinks.
6. Bentonite clay - 1-2 tsp, mixed in warm water (place in glass jar with lid & shake vigorously, leave to stand for 24hrs, avoid all contact with metal or plastic spoon etc. Drink at least 1,5 hours away from food (for us best results were observable when given just before going to sleep)
7. Fermented vegetables - to be consumed with all food (big dollop with each meal).
a) rinse all utensils container with boiling water
b) wash hands thoroughly
c) lightly rinse vegetables in filtered water (un-chlorinated)
d) remove any blemishes, chop veg into small 1,5 cm chunks (cabbage is shredded very thinly, 1 mm)
e) place veg in bucket with 3tsp (35g) ground salt per kg & partially crush with potato masher/ work with hands to release some juice;
f) place tannin-rich leaves (grape vine, oak, horseradish, black tea) at the bottom of jar (sized for 1 week's consumption) with veg above and press down firmly with hand/ masher to expel air, juice to rise to surface to submerge veg, place more tannin-rich leaves on top, jar to be no more than two thirds full;
g) carefully wipe around inside neck of jar to remove any particles of veg or juice;
h) press veg with a porcelain plate or a small lid to keep them submerged at all times & add 2 cm brine on top & place jar (with air-tight lid that allows out-gassing) in a dark position at room temperature (18C is ideal, max 22C) standing on a plate to catch any overflow; in hot weather,place jar incool box with ice & thermometer & check twicedaily;
i) do not open lid or disturb contents of jar (CO2 will then form layer above liquid);
j) for whole veg, when jar is gently set down on table & bubbles rise,this shows fermentation is underway (the level of liquid will have risen);
k) and when no more bubbles are produced it is ready for consumption & in any case usually after about 1 week for most veg depending on temperature (for cabbage: 15C 6 weeks, 18C [best], 20C 4 weeks, 22C [max] 3 weeks);
l) jar can then be placed in cooler, long-term storage (e.g. cellar, top shelf of fridge) for consumption over the coming months;
m) once opened, make sure veg is pressed under juice,top-up with brine as necessary to keep veg submerged; best to consume each jar within a week or so of opening;
n) Veg MUST be crunchy & sour.
Avoid:
Eat nothing that is moreish/ addictive.
No burnt, raw (except garlic & ginger), fried, spicy, starchy or sugary foods (not even carrots, unless fermented) - we are still giving carrots as we're in a transitional period of re-applying this diet in our eating schedule.
No dairy, grains, legumes, nightshades, root vegetables (unless fermented), nuts or seeds (very hard to digest and shop-bought nuts & seeds tend to be moldy & hence best avoided altogether), yeast.
Limit brassicas.
No mushrooms.
No eggs (on in strict moderation as constipating).
You would not believe the immediate change you would see once on this diet. This is so true that YOU ARE WHAT YOU EAT!
So without further ado, I will just write the advise from our friend who has worked out this diet, experimenting on himself, modifying it,until he perfected it to the point it is now. When we stuck to it over the Summer we saw huge improvement in Mikey's overall behaviors and focus. He was verbalizing his wants in a much calmer manner, he didn't suffer from any digestive issues and he slept through the night! So here it is folks! Quoting our dear friend...
All food, ideally, to be organically farmed or wild.
Water for drinking & cooking to be carbon filtered.
All baking to be done in a pot with a lid at 160C max.
Salt - sea or mountain salt.
Cook in morning for whole day (I am still struggling with this one) :) Food cooked earlier in day to be brought back to boil before eating. Food to be eaten warm, never too hot or cold.
Do not overeat! One large bowl max. per meal. Ensure the same quantity of food is eaten at each meal. Meals to be eaten on time or early, never late, in a quiet, relaxed environment, no reading/ TV and preferably in the company of others.
No mental activity immediately after food.
All vegetables must be fresh and firm with absolutely no sign of mold or even softness. Peel all vegetables where possible if any chance of pesticides etc. Use sea vegetables if available.
Essential daily components:
1. Protein - it is essential that protein is consumed for breakfast!
2. Bone broth- simmer very low cut bone, cartilage, tendon, skin (e.g. spine, feet, ears, tail, head, knuckle, rib, neck) & salt for 48hrs, strain, leave liquid to cool & store in fridge for 1 week or freezer for several months. Add to cooking daily!
3. Lard and Ghee (clarified butter) - pig leaf (kidney/ loin) fat, slice thinly & simmer for several hours in salted water, strain, discard solids, leave to cool & store in fridge for up to 2 weeks or freezer for several months. Add to cooking daily!
4. Raw garlic 8 cloves & ginger 1 large finger - chop & leave to sit for 15+ minutes before adding to food after cooking (MORNING ONLY).
5. Cinnamon - add up to 1/2 tsp per day to cooking or drinks.
6. Bentonite clay - 1-2 tsp, mixed in warm water (place in glass jar with lid & shake vigorously, leave to stand for 24hrs, avoid all contact with metal or plastic spoon etc. Drink at least 1,5 hours away from food (for us best results were observable when given just before going to sleep)
7. Fermented vegetables - to be consumed with all food (big dollop with each meal).
a) rinse all utensils container with boiling water
b) wash hands thoroughly
c) lightly rinse vegetables in filtered water (un-chlorinated)
d) remove any blemishes, chop veg into small 1,5 cm chunks (cabbage is shredded very thinly, 1 mm)
e) place veg in bucket with 3tsp (35g) ground salt per kg & partially crush with potato masher/ work with hands to release some juice;
f) place tannin-rich leaves (grape vine, oak, horseradish, black tea) at the bottom of jar (sized for 1 week's consumption) with veg above and press down firmly with hand/ masher to expel air, juice to rise to surface to submerge veg, place more tannin-rich leaves on top, jar to be no more than two thirds full;
g) carefully wipe around inside neck of jar to remove any particles of veg or juice;
h) press veg with a porcelain plate or a small lid to keep them submerged at all times & add 2 cm brine on top & place jar (with air-tight lid that allows out-gassing) in a dark position at room temperature (18C is ideal, max 22C) standing on a plate to catch any overflow; in hot weather,place jar incool box with ice & thermometer & check twicedaily;
i) do not open lid or disturb contents of jar (CO2 will then form layer above liquid);
j) for whole veg, when jar is gently set down on table & bubbles rise,this shows fermentation is underway (the level of liquid will have risen);
k) and when no more bubbles are produced it is ready for consumption & in any case usually after about 1 week for most veg depending on temperature (for cabbage: 15C 6 weeks, 18C [best], 20C 4 weeks, 22C [max] 3 weeks);
l) jar can then be placed in cooler, long-term storage (e.g. cellar, top shelf of fridge) for consumption over the coming months;
m) once opened, make sure veg is pressed under juice,top-up with brine as necessary to keep veg submerged; best to consume each jar within a week or so of opening;
n) Veg MUST be crunchy & sour.
Avoid:
Eat nothing that is moreish/ addictive.
No burnt, raw (except garlic & ginger), fried, spicy, starchy or sugary foods (not even carrots, unless fermented) - we are still giving carrots as we're in a transitional period of re-applying this diet in our eating schedule.
No dairy, grains, legumes, nightshades, root vegetables (unless fermented), nuts or seeds (very hard to digest and shop-bought nuts & seeds tend to be moldy & hence best avoided altogether), yeast.
Limit brassicas.
No mushrooms.
No eggs (on in strict moderation as constipating).
You would not believe the immediate change you would see once on this diet. This is so true that YOU ARE WHAT YOU EAT!
Monday, April 6, 2015
April 6, 2015 Small baby small Autism - big baby, AHHHH!!!
April 6, 2015 Small baby small Autism - big baby, AHHHH!
I know it's been a while since I posted anything. A lot have happened since my last post. Some good, some bad - usual stuff in ASD world, right?
Michael turned 8 and matured in many aspects. He is more sociable at school with his peers (seems like he prefers playing with girls ;) he has a circle of faithful fans in the class). Looking back, I see that he always felt more comfortable around girls/ ladies in general (just like his daddy ha ha). He has a fantastic new one-to-one whom he loves and respects. It's amazing how God sends the right people at the right time. We were very excited to find out that there was "a vacancy" in the class, we wanted Mike to attend. The only condition that school had was that we'd arrange a "shadow" person, as Michael would be in new school environment, new friends, new teachers etc - many changes in one go, so he needed an assistant to help him cope with this. We were kinda hoping his previous therapist would be available but she was already committed to work with another child, so we asked for help everyone we knew and found a girl. We thought yey, she's gonna be great. She was smiling a lot, and seemed like she had a lot of patience... It was like a well awaited piece of good news after my surgery (a month and a half ordeal of potential lymphoma, several biopsies, cutting out the tumor with surrounding lymphnodes and physiotherapy), which almost cost me losing my job but that's another story :) As I was in hospital recovering from my surgery, we received a phone call from Mikey's new assistant that after just one and a half week of working with him she felt too tired and that she didn't realize it would be such a hard work. So basically she quit leaving us in really poopy position. I wanted to shred her to pieces and tell her how unprofessional she was, and most of all how she failed Michael... But I just let her go remembering WWJD... Yes, God showed me the way and that He had a different idea for the perfect "shadow". We had literally a weekend to find a new one-to-one or Michael would be expelled from school for not being fit to participate in all school activities and academic program. So what did we do? Yes, when in trouble - look up :) Guess what, we prayed and sent messages to all therapists and psychologists we knew and respected asking for help in finding the right person to help Michael during school hours. God is merciful and gives more than we hope and ask for. We found out that the lady who worked with our boy during Summer school is looking for a job as a one-to-one and would happily continue work with Michael. Not only did we liked her but we already built trust based relationship with her and other therapists in that Summer camp. It was a God-sent indeed. She has a huge heart and true Christian compassion for our son and other children on ASD. Michael has progressed academically and socially with her assistance so much within only a few months time. We are blessed in this regard.
So what's wrong? Well... Darn wheat and casein, that's what's wrong. Mike has been to a birthday party of his school friend 3 weeks ago. We thought 'sure, why not! Let the boy be a boy and have some fun'. It was a really cool party held in a cookery school. Kids were making pizzas and baking cookies - mhm... yes, yes full of gluten, sugar and artificial coloring filled icing that Michael had handful of. He ate some raw flour, dough, baked goods and he crashed. Ever since that party he's been a different person. As if he's been in a cloud or in a daze.... Very poor eye contact, actually keeping his eyes closed most of the day, unbelievable tantrums out of nowhere and over nothing, completely losing it! Worst of that is insomnia (now better some thanks to black walnut tincture, calcium and our good ole' friend "Mel" - melatonin). He's been potty trained when he was 2,5- 3 but this gluten feast inflamed his blood and brain keeping him in a "zombie" state, without any control over his body. So yeah, we've had some sleepless nights, toothaches, headaches, severe indigestion, stomach pains and cramps... I just want my boy back!
In my next post, I will explain what a difference a special diet made in Mikey's life during the Summer. It's no secret that problem is in the gut. Found out myself by implementing a special menu... Unbelievable! So stay tuned :) God bless and goodnight
I know it's been a while since I posted anything. A lot have happened since my last post. Some good, some bad - usual stuff in ASD world, right?
Michael turned 8 and matured in many aspects. He is more sociable at school with his peers (seems like he prefers playing with girls ;) he has a circle of faithful fans in the class). Looking back, I see that he always felt more comfortable around girls/ ladies in general (just like his daddy ha ha). He has a fantastic new one-to-one whom he loves and respects. It's amazing how God sends the right people at the right time. We were very excited to find out that there was "a vacancy" in the class, we wanted Mike to attend. The only condition that school had was that we'd arrange a "shadow" person, as Michael would be in new school environment, new friends, new teachers etc - many changes in one go, so he needed an assistant to help him cope with this. We were kinda hoping his previous therapist would be available but she was already committed to work with another child, so we asked for help everyone we knew and found a girl. We thought yey, she's gonna be great. She was smiling a lot, and seemed like she had a lot of patience... It was like a well awaited piece of good news after my surgery (a month and a half ordeal of potential lymphoma, several biopsies, cutting out the tumor with surrounding lymphnodes and physiotherapy), which almost cost me losing my job but that's another story :) As I was in hospital recovering from my surgery, we received a phone call from Mikey's new assistant that after just one and a half week of working with him she felt too tired and that she didn't realize it would be such a hard work. So basically she quit leaving us in really poopy position. I wanted to shred her to pieces and tell her how unprofessional she was, and most of all how she failed Michael... But I just let her go remembering WWJD... Yes, God showed me the way and that He had a different idea for the perfect "shadow". We had literally a weekend to find a new one-to-one or Michael would be expelled from school for not being fit to participate in all school activities and academic program. So what did we do? Yes, when in trouble - look up :) Guess what, we prayed and sent messages to all therapists and psychologists we knew and respected asking for help in finding the right person to help Michael during school hours. God is merciful and gives more than we hope and ask for. We found out that the lady who worked with our boy during Summer school is looking for a job as a one-to-one and would happily continue work with Michael. Not only did we liked her but we already built trust based relationship with her and other therapists in that Summer camp. It was a God-sent indeed. She has a huge heart and true Christian compassion for our son and other children on ASD. Michael has progressed academically and socially with her assistance so much within only a few months time. We are blessed in this regard.
So what's wrong? Well... Darn wheat and casein, that's what's wrong. Mike has been to a birthday party of his school friend 3 weeks ago. We thought 'sure, why not! Let the boy be a boy and have some fun'. It was a really cool party held in a cookery school. Kids were making pizzas and baking cookies - mhm... yes, yes full of gluten, sugar and artificial coloring filled icing that Michael had handful of. He ate some raw flour, dough, baked goods and he crashed. Ever since that party he's been a different person. As if he's been in a cloud or in a daze.... Very poor eye contact, actually keeping his eyes closed most of the day, unbelievable tantrums out of nowhere and over nothing, completely losing it! Worst of that is insomnia (now better some thanks to black walnut tincture, calcium and our good ole' friend "Mel" - melatonin). He's been potty trained when he was 2,5- 3 but this gluten feast inflamed his blood and brain keeping him in a "zombie" state, without any control over his body. So yeah, we've had some sleepless nights, toothaches, headaches, severe indigestion, stomach pains and cramps... I just want my boy back!
In my next post, I will explain what a difference a special diet made in Mikey's life during the Summer. It's no secret that problem is in the gut. Found out myself by implementing a special menu... Unbelievable! So stay tuned :) God bless and goodnight
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