Slowing down

Before we embark on our RDI activities and interaction, we have to train ourselves to slow our life down.

We have to suppress our natural urge to react before thinking about how we are reacting. This is by no means an easy task. Especially for an emotional, easily irritated creature like me who has conditioned herself to over react to just about everything.

We have to learn to wait for K to regulate himself. We have to be Mindful.

Here is a typical scenario from our home. Someone approaches K with a book/toy. He obviously wants it but wants to have nothing to do with the person offering the toy. You try to play with him, try to create some joint attention. K tries harder to assert control. You fumble, get nervous. K escapes, you call after him. He comes back, annoyed. You continue. This behaviour continues. One of two things happen: 1) You give up and let him have the toy and play along on his agenda or 2)K finds something else to do. You worry, start panicking on the inside about his state of affairs and your inability to connect with your child.

We have to learn to say less. Wait more. When he is trying to assert control you have to continue WITHOUT feeling nervous and panicky. That is a lot to do. Because if you cannot stop feeling this, you will not be able to focus on the task at hand. You will not be able to think straight and persevere.

This has to be applied to every single thing you do. From getting ready to go out, to meal time to everything.

I tried that today. I told K we are ready let us put on shoes and go out. He ignored me. I stood in the hall with his shoes held out. I did not make a sound. He ignored me. A few minutes later he came running towards me really fast as if he would run in to me and then went away. I stood there just holding the shoes sort of out towards him and did a facial gesture to "come on" when he glanced at me.

He came running really fast again as if he would run in to me and then just before crashing in to me he sat down on the floor. (He has some great motor skills this kid).

He put on his shoes.

What does this accomplish?

This encourages K to observe what is happening in his environment and respond to it accordingly. I am not teaching him to put his shoes on right or to even obey me. I am teaching him to notice me, notice my gestures and notice my intention. It is subtle and it is so hard for him.

This also mean that it takes me twice as long (if not longer) to get anything done.

I have hopes from this RDI stuff.

Lemon sauce sea bass with beans

It looks a bit congealed in the picture but that is because I made it then didn't bother to take a photo and took this the next day before reheating.

The beans are Urad lentil and black eyed beans (the latter is now actually OUT of our diet), but it is a yummy dish.

Nothing to it, just salt, pepper, lemon, paprika the fish. Bake.

Shallots, lemon, salt, pepper, some GF flour (also OUT of diet now) to make sauce.

Pour on fish after it is done.

Beans are just boiled and then fried together with sauteed onions, salt, pepper.

DELISH!

All day I think about tea

Here is a picture of my current tea collection.



Some of my own "concoctions" are missing in this picture. Which are usually things without actual tea in them, just ground cardamom, cloves and other spices that I mix together and add to hot water.

I drink it with and without milk, with and without sweetener (sugar or honey), there is no end to the different ways you can make tea.

For me the making of the tea is just as much important as the drinking. I am fussy about how hot it needs to be and how it smells to the last drop. Needless to say there are very few people in this world who are able to make tea for me (not a cup I actually enjoy drinking).

I am trying however to cut down on the caffeine intake, so caffeinated only in the morning and evening (especially after K wakes up in the afternoon).

The curved life

Oh man, bean bags are here!! I love my bean bags. I cannot believe I have wasted half my life sitting on ridiculous chairs, couches and other rubbish.


Once you are seated/reclined on one, you just DO NOT want to get off.

Often people are put off by their previous bad experiences with bean bags such as:

Not being able to get off a bean bag. Rolling off.
Back ache.
Bean leakage
Unkempt, casual appearance of space.
Sweating, slipping off.

The reason for most of these problems is the quality of the beans and bean bag material. Find a good bean bag with high density beans. Don't go to walmart or sears. Get the real thing and you will notice the difference.

As for casual appearance, that is up to your individual taste. I always choose comfort over outward appearance. Its the sneakers versus high heels debate all over again. If you can get away with wearing sneakers then why would you deliberately torture yourself?

I will most likely get a couch at one point for "visitors". After all you can only sit one person per bean bag and I could only afford two!

But seriously, I am not going clutter my limited living space with furniture for appearances.

My back is so happy right now.

Ready set ....

Don't let those curls and goo goo eyes distract you! Khaled has been busy charming his therapists silly.

I think I may finally have found myself some instructor therapists!! It took me months, I ignored suggestions about going with recipe book programs. I want control and quality and this is the price you have to pay for it.

Khaled has been going to the Brookfield place on and off after hours as it was not term time. In July it will be half term and he will be able to start a couple of sessions a week at the clinic. What is most important however is that I think I have found a couple of therapists who are actually excited about working with Khaled in the way that I want, rather than just trying to fill their diaries.

During the sessions he has had, I have heard he has shown that he can learn things pretty fast and has almost clear articulation (even if he doesn't attach any function to his speech). Which we already knew of course, but it is nice to hear and great to know that there is hope for instructional control and getting him to follow your agenda.

Now all I have to do is formulate a time table that fits around everyone's schedule, brace myself for the ever increasing cost of everything and get some ABA toys.

I wish I had a time machine

OK that's a picture of a galaxy. BUT I always imagined when you go through a time machine you would see something like this swirling around (thanks to a life time of bad science fiction movies and novels).

I have been thinking about the future a lot lately. Not about my future or that of the economy, the state of Palestine or the climate. I have been wondering everyday about what Khaled will be like next year, the year after that, when he is 13, 19, 30 and so on.

For the first time since his diagnosis I am excited to find out what he will be like in the future.

This could just be attributed to the lunar calendar, my menstrual cycle, a shift in mood or hormone levels, I am not sure. Whatever the reason, I am excited.

Khaled loves us. He loves me. He loves his cousins. He is not a detached, uncaring, vacant stereotype. Today his father came home and tried to get him to throw a ball to him (sometimes I wish his father would come up with his own games, try to vary, be original. I always feel I am stuck at the controls. I like control, but seriously I am stuck there). So he was trying to get him to play with him and Khaled kept coming over to me in the other room, looking at me and smiling invitingly. He wanted me to join in.

This kid surprises me all the time. Don't get me wrong, I am not competing. I am his mother, I have already won all the competitions. I really want to help him build a relationship with his father. I keep trying to think of ways I can get the two of them to have meaningful interactions. I try to reserve bath time every night for dad, because Khaled likes it. Setting the dinner table, because it helps him feel competent.(Some days however somehow I find I am the one sitting there pouring water on Khaled with a cup).

We bought a V-smile thing for Khaled. I know he cannot play, he can hardly get his eyes off the graphics to figure out the rules. But he is fascinated and that is something reserved for his time with dad.

I am also thinking of getting a guitar. His dad claimed (before we got married) that he could play. However I soon realized that was an exaggeration. However, I am sure twinkle twinkle and Old McDonald can't be that hard to learn. Google solves a lot of such problems. That could be a dad and him activity. Khaled LOVES musical instruments, music and singing.

I am intrigued to find out how my relationship with Khaled will evolve, what he will be like with his father, who will Khaled be?

Sometimes I am very afraid of the future because it seems awful for anyone with any kind of disability, or even a slight "difference from the norm". However on days like today for some reason I find I cannot wait for the future.

From running to slouching

[PICTURE DELETED]

This is a picture from the 1st of January this year. Not so long ago. This is before K got diagnosed. I have run further than this on tougher terrain. You would think I'd remember the longest and most difficult race as my most memorable one, but that is not the case. (Maybe because I sucked in my longest race and it was painful hell because I ran out of fuel, literally, I had no food left to eat, and was probably consuming my own muscles).

Anyway, this was a 10K over a lot of mad hills in Surrey (England). It was a costume race and lot of people had hangovers from new years eve (the night before!) but they ran anyway.

I remember this race because I did better than I ever expected and had a blast. Road running has got NOTHING on trail running. Seriously. Quad busting, tibialis anterior cracking fun.

I was a bumble bee of course.

It would take me months now to get back in to shape to run a race like that again.

The toll all the emotional stress and the complete lack of running since March has taken on my body is enormous.

I am posting this picture and creating a label for Running posts in the hope that I will soon start running again.

Eggs make the world go round

I tried two really simple recipes today from the SCD RECIPE website. They turned out great.

K will eat and tolerate eggs so I try to find new ways to give them to him. We try to do no more than 4 eggs in a week, but sometimes its hard to find what else to give for breakfast.

Coconut Omelette

Egg, some coconut (flake or powder), honey. Mix. Make like omelette!

Banana Almond pancake

Ripe banana, mashed. Mix egg and honey. Add to banana. Make sure there are no banana lumps left. Add some Almond flour. (I made my own flour by simply grinding some slivered almonds as finely as I could in the chopper).
Make like pancakes. Cook on low heat because the honey burns quickly and this is not regular flour so takes a while before pancake is ready for flipping.

If you want to make your own almond flour, make sure to use blanched (skinless) almonds, dried of course.

One eye of frog, some gummy worm and a rabbit's foot

These are the supplements we are giving K currently.

Kirkman's super nu thera powder (multi vitamins) - GFCF, soy, gelatin and sugar free.
Kirkman's Cod Liver oil
Cell Food
HMF Neuro (Probiotic)
HAD (Adrenal drops)
B Complex

They can be ordered from Spectrum Supplements Online.

(I know the title of the post implies quackery, but that is just my odd sense of humor, which some people find offensive. If I don't do it, I go insane and have been known to bang my head on sofa arm rests - I don't have autism or inflammation, I get stressed easily). We are taking our biomedical journey seriously.

Rather than making this intervention a headache or a disability, we are trying to make it a part of our lives. That takes skill, time management and some humor.

I am going to post about each one and why we are giving them to him in a later posting (it will take a lot longer!)

These are expensive supplements, but K has been having regular bowel movements without pain since he started these. His teeth grinding has reduced (he was doing it almost constantly), but he still grinds when he is upset/under pressure.

K is a little bit more compliant with food. See below photo evidence of him actually chewing a cucumber. We have gone from not wanting to be in the same room as a cucumber, to touching, to actually consuming! I am no longer crying after meal times (yes me, not K) from the stress of a 4 hour feeding session. We use less language during meal time and more simple words, facial expressions, nodding, shaking head and happy sounds (sounds strange I know but it works and is a lot more peaceful).

So whats the big deal?

Everything is a big deal with a child with autism. We measure our gains in very very small increments.

Age two and a half - the road to diagnosis.

This is K just after he started Montessori at age two and a half.




He has a few words, you can hear him label colors towards the end. He imitates. There is hand flapping but its not from any stimulus (i.e. he is not angry, sad, happy). His behaviour is odd and meaningless. We still don't have a diagnosis or want to admit he has Autism.

We are worried K is not talking, he does not say mommy. He has lost the ability to say baba (for father - he used to say it at age 15 months and also could label colors, picture cards, had joint attention while reading a book). At the time of this video he wakes up at 4:30 or 5:00 am and frequently falls asleep in Montessori or on the way to Montessori at 8 am. He sleeps at 9pm or later at night. He has no joint attention or desire to play with us. When we attempt to, he runs away or starts doing rounds of the house, or runs in front of mirrors.

In a few months after this video K will lose all labels, he stopped saying anything, no colors, no animals. K became increasingly unhappy and started waking up at night and running around the house scared screaming (night terrors). His odd repetitive behavior will increase. He will get a diagnosis of Autism Spectrum Disorder and severe speech and cognitive delay.

At age 2

This is K at age 2.



He is not responding to his name. He is a curious fun loving boy and we still have no idea that he has any problems. Around this age, K stopped eating pretty much everything and is living on cheese, bread sticks, milk, flat bread, plain rice and juice only.

Almond Chicken bake

I don't have a picture, but take my word for it, it looked and tasted great.

Chicken cut in smaller pieces
Onion
red bell pepper
garlic
ginger
sea salt
pepper
cyan pepper
turmeric
coriander powder
almonds
olive oil


This is an adapted recipe, the original has yogurt in it, but we are dairy free so none for us.

Sauce

Saute chopped onions in olive oil
Add chopped peppers
Add spices
Chopped garlic and ginger

Fry all together. Then blend in blender/chopper

Chop up the almonds, add some water in chopper to aid chopping.

Pour everything over chicken in a baking/casserole dish.

Bake at 475 F for however long it takes in your oven to have the chicken become tender and most (not all) of the water to evaporate. It took me around 60 minutes.
The resulting chicken is soft, juicy, the sauce is thick, nutty with flavor. Its just awesome.

Beef and Gram flour Patties

Aka (Shami Kebab) - my mother's recipe. The most commonly consumed snack from back home. I turned it in to the easy cop-out recipe.

Eat with dips, chutneys or put in a sandwich.

Beef chopped in to medium chunks
Gram lentils (aka chickpea lentils, or chana lentils)
(Ratio I used was 1:4 cups for lentil:Beef)
Cinnamon sticks
Black cardamom
black pepper (whole corns)
whole cyan peppers
regular cardamom
Ginger
Garlic
Sea Salt
Chopped Shallots
Chopped Coriander leaves
Olive Oil
2 eggs

Soak lentils overnight or for a few hours. Boil until tender.
Fry the Cinnamon, Cardamoms (one black cardamom and a few regular ones), whole black pepper corns, cyan. Add beef chunks. Add water to cover beef. Boil until tender.

I removed the whole spices from the beef mixture before chopping. (just pick them out)
Chop lentils and beef together in chopper.

Add garlic, ginger ( I used powder because I couldn't be bothered to chop more stuff), olive oil, eggs, shallots, coriander and mix. You can add green chillies chopped, but this was for K so it would have been a bit too spicy.

I got K to mix it for me and crack the eggs.



Make patties. Shallow fry. Because the beef is already cooked, you don't have to keep frying forever.

They freeze really well (the pre-fried patties, not after frying of course!)

Fish Cakes

I should have baked them, but by the time I am done preparing things there just isn't enough time to wait for things to bake! Must try harder next time. They tasted great.

Haddock and Salmon fillets (chopped in chopper)
Chopped shallots
pepper
salt (we use pure sea salt)
Chopped spinach
coarse cyan pepper
2 eggs
some all purpose flour (GF) to hold it all together - can also use Chikpea flour.
Olive oil

Mix all. Make patties. Bake or shallow fry. They should be golden brown, but mine sort of ended up being a bit reddish brown :)

At one year old

This is a video of K after his first birthday. We are I think packing to move to England. We found him sitting on the computer doing his thing.

I don't know what to make of it. He is initiating some communication pointing to the computer and making a sound. He is imitating us obviously. In the end of the clip he responds to his name.

Reducing toxic burden

The amount of toxins we are exposed to now is exponential. They start early when we are fetuses from the food our mothers eat and it really seems to be (for most children) and downhill slope from there onwards. Even the fruit you eat thinking it is so great for you is covered in yeast because it has not been plucked out of the garden, fruits don't grow in super markets! It has travelled in containers from God knows where. It does not have half the nutritional value that the fruit your great grandpa used to eat.

Take chickens. They are fed steroids, arsenic and then dipped in chlorine and then you eat them. Lovely. I'll pass on the Arsenic Parmesan thank you.

We are now trying to reduce K's toxic burden.

HOW??

I have not perfected this and it is tough. I live in an ancient apartment building with ancient vents and communal washing machines with other people's bodily fluids.

BUT what I have done is:

Thrown away all solvents and cleaners. We now clean with baking soda, water and vinegar. Its cheap too!

Cook only with whole foods (i.e. no instant chicken cubes or other rubbish, everything from scratch - or as scratch as I can make it - I can't go out to farms and pick my own veges)

Give K organic things. ( I suppose the money saved on solvents can go towards the high cost of organic food, but its worth it. I bet one organic carrot has more in it than a bunch of non-organic carrots).

Bathe him in a concoction of baking soda and Epsom Salts with lavender oil.

Moisturize him with almond oil.

Doing what I can to pottee train him fast so we can forever rid ourselves of toxic diapers. (Diapers have chlorine). (It was not too long ago when there were no diapers. My younger sister and I did not wear diapers, we wore cloth nappies)

It is all a work in progress.

What is this GFCFstuff anyway?

I get asked questions about the GFCF diet by family members. I am going to try and answer some questions related to it (based on my limited understanding).

Gluten and Caesin free diet basically means removing foods that contain gluten and caesin.

There are 7 food grains: Rice, Barley, Corn, Millet, Oats ,Rye and Wheat. Wheat, rye and barley contain gluten.

That means all breads, cereals etc are out of the picture. ALSO many processed foods contain wheat. Just because it says Corn Flakes on the box does not mean it has no gluten.

The starch in these grains is coated in fibre and protein and most of this is removed when you grind to make flours.

Gluten is the gluey bit of flour that makes it bubbly and stretchy. That's what makes wheat sticky.

Caesin is one of the main proteins in milk.

What does that have to do with Autism?

It has been argued that a lot of people with autism have Gluten and Caesin intolerance. For some people food allergy or intolerance comes out as hives and other reactions, while for some people (for eg celiac disease) it comes out as changes in the lining of the intestines due to malabsorptin of Gluten.

But what does my gut have to do with my brain?

It is still a mystery how gluten really affects brain function, but one piece of this puzzle starts with digestion of protein.

Lots of amino acids (smallest bit of a protein) are linked together to make a peptide. In the gut, two things proteases and peptidases unravel these complex chains to aid digestion and absorption. Gluten intolerance has something to do with one such peptidase (enzyme) failing to do its job.

The undigested peptide causes problems. The immune system causes a complex defensive response to it and starts damaging tissues and antibodies - autoimmune damage.

Secondly, the undigested peptide enters the blood. If you have a leaky gut lining (as it has been claimed that a lot of autistics do) then lots of this peptide ends up in the blood. Gluten derived peptides look like opium and mimic opium (drug that alleviates pain) - (maybe explains high pain threshold?)

So we are talking gluten sensitivity and enzyme deficiency, leading to suboptimal metabolism, leading to suboptimal nutritional status of all organs of body. This coupled with toxic exposure to mercury, arsenic (both found in vaccines and even chickens!), solvents etc etc affect metabolism and cause inadequate energy for neurons and networks to operate leading to chronic deficiencies and biochemical train wreck in body.

Is this going to cure K's Autism?

I really don't believe that. I can only go by what I have observed as a result of his GFCF diet. K had severely painful stools. He would strain and cry and it was awful for him. This had gone since he was 6 months old on and off. His bowel movements have now dramatically changed to normal. He is now on his way to being pottee trained.

There are a number of other things we have done besides removing Gluten and Caesin. Such as, cleaning up his diet of all colourings, sugar, artificial flavorings etc.
See Post Reducing K's toxic burden.


Why are you restricting his diet? He is just a child, let him eat what he wants. You are a control freak.

When K was not in this diet, he only wanted to eat cheese, bread sticks and milk. He was slightly interested in muffins or plain cake, flat bread and junk food. He was addicted to juice boxes. He refused everything else.

Now on this diet, K still does not want to eat much. However with bribery (through DVDs and stuff), I manage to get some useful stuff in him. He only drinks home squeezed juices of fruits and some veges. He eats a variety of different flours (lentil flours, nut flours, rice flours). His diet consists of fish, meat, chicken, eggs, vegetables and fruits.

How is this restrictive and how is cheese pizza not restrictive?

My life would be very easy if K was not on a GFCF diet. Wheat and all purpose flour is not the only thing in this world. There are a host of other things and thanks to our cultural background we are aware of them and have in fact grown up on that stuff. (Besan pancakes anyone?)

Who knew

My sister recently found some old videos of K in her inbox. We have lots more but are still waiting for our stuff to arrive from England by shipment.

Since his diagnosis I have been dying to watch his old videos to figure out if I can see any signs of his Autism.

This video is from when he was 4.5 months old and was making his first sounds. (I think we are laughing because he was making loads of talking sounds and then as soon as the camera turned on he shut up)

Here is another video from that time.




We are still in Canada in this video, just moved in to our Mississauga apartment.
He is a cute, happy baby and we are really proud of his development.

You don't know me

K likes to do repetitive things and we have to resort to novel was to get his attention.

He does not respond to his name.

If he says something no one knows what he is saying. Usually they are scripts from old conversations/songs/tv shows.

He is gorgeous though, so he has one thing going for him at least :)

High and Low Functioning

High and Low. Sounds like step aerobics.

I still don't get high and low functioning. What does it mean?

If someone on the autism spectrum does not have language and has a lot of stereotypic behavior then are they low functioning?

In that case my son is low functioning. That is, he is severely autistic.

If high functioning has anything to do with intelligence and ability to learn stuff. Then he is not low functioning.

Maybe it just implies the ability to function in this world. If you talk, relate and learn, then you can function and survive on your own. In that case how can you really know if someone is high or low functioning until they are much older and a dependent future has become imminent rather than just a possibility.

Some times I want to be able to say K is high functioning, because it sort of implies he has some hope of an independent future. Other times I don't give a damn because those terms still mean nothing to me.

To me Autism sucks the most because I don't know what it is and I can't find out, until I live through it. I hate not knowing. I hate waiting to find out. I hate the unknown. I am afraid of the future.

Mashed Squash

This is a squash. You get it in Chinese stores or South Asian ones. It's also called Lockhi/Doodhi. Maybe they call it other names too, but who cares as long as you know what it looks like. It has an awesome sweet taste.

Peel Squash, cut in cubes

Small onion, chopped. Saute in coconut oil, add chopped garlic, cumin seeds, salt and some water. Cook until tender enough to mash!



These are the two cumin seeds (black and regular ones). Black ones are amazing with squash, potatoes and other bland sort of veges. My grandma ate these seeds on their own. She claimed they helped lower her cholesterol or something. (I am not saying it does that, she also fed me deer horn shavings as a kid)



Looks kinda oily but you can add less oil. Yummy with bread, rice, tortillas or on its own.

Potato cutlets

These were a hit with K today. Things change, he may hate them next week. Nothing can be taken for granted in the autism household.

Boiled potatoes ( I used 6 medium sized)
Onion chopped finely (one)
crushed red pepper (1 tsp)
black pepper
salt
Gram flour (2 tblsp)
2 eggs
Olive oil

Skin and mash potatoes with fork. Add onions, eggs and other stuff. Mix. Oh and the Gram flour needs to be sort of heated on a dry non stick pan - dont make it brown just sort of until it lightly changes color. I don't know why we do this, my mom told me to. I think it helps hold things together and give a nice smell to everything.

Make round shapes and shallow fry!

Simple and yummy. Best part he actually ate them.