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March 7
I have to keep writing or the days will keep flying by and I'll forget everything!

Last week Friday Luke had another session at the Child & Family Therapy Centre gym with the OT and PT. He had a hoot. He's been pretty uneasy and lacking confidence in his running/stepping, so we practiced a lot of stepping up and down onto mats of different heights. He was totally enjoying himself, practically running around the gym and stepping up and down all over the place... even daring to go on the "uneven" parts (we put balls underneath the mats), and he often steadied himself if he went off-balance. There was also a "pool-noodle" ladder placed on the floor and at first he was leery, but then (when we were all talking and ignoring him) he stepped into each "square" of the ladder, one-by-one. He had to lift his leg and "step-over" the noodles five times... and he did this all on his own initiative. He was quite proud, happy and totally enjoying himself. It was so encouraging to watch. We're really working with him to step up and down the stairs while standing (he's a bum-down-the-stairs and an ape-walk-up-the-stairs guy). He will step up on his own while holding a handrail. We had another session yesterday and our goal was to get him on the big swing. I sat with him for a while until he was calm and comfortable (sang songs)... and later he went on by himself and enjoyed the soothing rocking while the OT sang "Twinkle, Twinkle, Little Star" over and over.

On Wednesday, March 5 we had the WHOLE TEAM here: 2 BIs, 2 BCs, MT, PT, OT, and SLP. Each of the Ts spoke about their plans and progress with Luke as the BCs took notes so they can integrate all the ideas and goals into Luke's overall Intensive Behavioural Plan. It was so great to have everyone meet and to learn from each other, all for LUKE!

His ABA Program was changed as he has mastered a few concepts. They began the new program Thursday morning and he had immediately mastered "matching" again... so it is more than obvious that he understands how to match items. He is also beginning to "imitate" more... "wave" and "clap". He tries so hard to use his sign language when asked... and often runs through 3 or 4 signs, looking at us to see if he got the right one yet? It's quite cute. He is VERY energetic and focused and seems to really enjoy learning. One of the BIs mentioned that Luke is a joy to teach because he really wants to learn (okay, my kid's a keener!!).

Also spoke to the BCs about adding to Luke's program. He currently has help from 9-12 M-F; but a new woman, Ms. M. is interested in 2 afternoons a week 2:30-5:30. We will meet her next week and hopefully have her start asap. This extra time will more than likely come out of our pocket... but we feel Luke is incredibly receptive right now so we'd like to maximize his learning during the "window of opportunity" (age 3-6).

Toilet-training isn't going that well as he still hasn't peed on the toilet. Time for some serious training. The plan for this weekend is to put him in underwear only, and deal with the messes, in the hopes that Luke will finally make the connection... will keep you posted :).

Another positive note: Luke is gaining weight! He looks so much healthier and his face is filling in again.

And.... dare I say it?..........................NO SEIZURES!!! Haven't seen ANY for a few days now..............

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Got some really great books, and I can't wait to read them all. I found "Nobody, Nowhere" in the second hand bookstore about an autistic girl named Donna Williams. It's written by her, and it's quite fascinating and mind-opening to read about how she sees the world (and how Luke possibly sees the world?). Other books: The Sound of a Miracle, Let Me Hear Your Voice, Children with Starving Brains, and the Second Edition of Special Diets for Special Kids.

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I just wanted to add a spiritual moment... I finished reading "Eat, Pray, Love" with my book club this past month and Elizabeth Gilbert writes about how a voice "within" her talks to her and it feels to her like "God"; with such wisdom and calming reassurance. That really resonated with me as I often have the same experiences. Mid-way through February I was treating myself to a massage, during which I was thinking about Luke and I felt God speak to me with these words: Watch, and Be Amazed.

March 9
I finished Nobody, Nowhere. Donna Williams mentions three types of disabilities: Those with physical disabilities are people who can "think" and "feel", but cannot "move"; those with mental disabilities are people who can "move" and "feel", but cannot "think" effectively; those with autism can "think" and "move", but have the most trouble "feeling" — their disability is with emotions.

The last few pages listed some explanations of typical autistic actions... Click Here.

March 12
We upped the DMG this week (known to increase speech) to 4 capsules per day, and I was hoping for miracles at his speech therapy session on Monday. I was disappointed. Luke would not talk (totally different from his session two weeks ago where he said many "words") and did not seem his usual savvy self. I thought maybe we gave him too much DMG? But I decided to wait it out.

Tuesday was difficult as I had to take him to the hospital for his bloodwork. When we got there, into "the room", Luke ran out crying. I had to hold him tight while they wrapped his arm in a warm cloth to get the blood flowing. He cried and looked at me like I betrayed him (heart-wrenching). We calmed him down and then had to pin him down again to take the blood. Fortunately, they got it on the first try (thank you God), and it was over quite quickly. Afterwards, he actually "pointed to" a specific sticker that he wanted (when given a choice). And he wore it proudly on his shirt. Today, Wednesday, I left a message for Children's requesting that we discontinue all bloodwork. I missed the return call.

For whatever reason, Luke amazed us today. It seemed like every hour he did something totally new and shocking. From sitting on the tricycle and trying to pedal this morning (Luke did not want to go on it last summer at all); to waiting for us at the top of the stairs with arm stretched out to grab our hand so we can walk down the stairs together; to signing appropriately without prompting (He pointed to the CD player, I asked him if he wanted music and what the sign for music is, and he did the sign – usually I have to do the sign first before he does it! He did this twice today, once for me and once for daddy); he came looking for me and daddy when his ABA session was over (mama/dada) – came to the office door; at lunchtime I showed him a pancake and a muffin and he choose muffin and ate the whole thing; at music therapy he "filled in" sounds on EIEIO... the MT would sing EIEI, and then pause for Luke to make a sound... and he said "a", and the second time said "a", and the third time said "o"; at one point he did not want Ms. E. to sing "Old MacDonald" and he made this clear by signing "finished" in the middle of the song; the MT also could not get over how much Luke looked at her face for approval or reinforcement; AND he waved (a slight lift of his arm) to her when it was time to say "goodbye"; at dinner time I pointed to the birds outside and Luke watched them (Luke has never shown interest in the outdoors let alone watched animals or anything, especially if it was farther away... he would never follow our arms to see what we were pointing at); he began closing and opening doors using the doorknob all by himself (without us asking); at night, when asked, he brought a specific book from a specific place to daddy for daddy to read... and followed it front to back with appropriate interest (remember he used to only stand books on end?); he also bounced by himself on the ball!!!!

Something's happening to our Luke.... he's totally coming around. AND still no seizures. Having constant seizures does delay development, and it seems that now since they are "in control", Luke's development has increased and improved tremendously. Perhaps it's the DMG, perhaps his stomach is healing from the "leaky gut" syndrome... perhaps the digestive enzymes are helping the nutrients from food reach the muscles; ... perhaps it's the amazing work of the ABA program and or great BIs and BCs; or it's a combination of everything!

Despite all this progress, I did notice a regression in a few of his quirks (this I hadn't realized that he hasn't done in weeks): he started opening the kitchen cupboard doors again; he wanted to play forward/back with me again (he likes to see my body make an "impression" against the couch); he was looking at the bottoms of plates and cups again; he's been dropping toys again; hopefully these are temporary? Hmmmmm...

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On a completely different note, I've been reading a lot of books lately about people who have recovered their children from autism. The book "The Sound of a Miracle" talks about the hypo- and hyper- sensitivity of autistic children's senses. For example, the girl in the book had difficulty with sound... rain would sound like a flood; thunder/lightning like an earthquake; the ocean like a tidal wave. These overwhelming sounds literally drove her crazy... she often had her hands over her ears. She could also hear the blood rushing through her veins. And her sight was phenomenal. She could see actual strands of hair (like spaghetti) and was prone to touch people's hair in fascination. Luke used to hate when we wiped the plastic tablecloth (made him crazy! crying and pulling our hand away from the table)... and he could hear a bus coming down the street long before we could (and could hear it despite any other noises around). He has not exhibited these hearing issues lately, so perhaps the diet and supplementation have resolved this, but I am going to observe his reactions more closely to see if he has keener senses than most people. I am also going to look into this "Audio Integration Therapy" (AIT) and see if it's available.

We also ordered the GFCF cookbook Special Diets for Special Kids Two, and I will try some new recipes as soon as I find the time!

March 14
Just a note to say Luke does not need any more bloodwork. Sometimes this out-of-sight, out-of-mind thing with neurologists really ticks me off. What if hadn't called? We'd still be bringing him every month. No wonder I'm a little disillusioned by the medical system, and embracing alternative health.

Also talked to genetics at Children's Hospital and there's no way for us to get an appointment with them on the days were in the Vancouver area, so we're put on a waiting list for the next clinic in Kelowna (if we waited for the Kamloops clinic it may not be for another year!)

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Luke did okay at the KIDS gym today, although I'm realizing just how trepid and anxious he is. Is it fear? or does he have a visual problem? We won't know about his sight until "they" call in the spring to book him for a summer appointment. Ayiyiyiyiyiyi. Anyways, it is very possible Luke may need prism glasses to correct a depth perception issue; but we will patiently wait for the experts to examine him. He also did not like rocking too wildly on the swing (with mommy) and we thought he was enjoying it because he was laughing, but then he started biting his hand a little so I said, "his laughter could mean he's afraid" as I learned from my reading.

March 16
Been having some GREAT days lately. Luke is understanding sign language now... he is definitely using them appropriately and without prompting (us manipulating his hands), and without us saying the word. He points to the CD player, we say "what do you want?" (btw he knows the sign for "want", I showed him once and now he does it whenever we say "want"), and he does the sign for music! So he's getting it! This is sooooo amazing! Here's a list of the signs Luke knows: more, pray, eat, music, sit, finished, pen, want, water, block, up, fork.

The other phenomenal action is he's stepping up and down the stairs "standing" up and WITHOUT our help. He hangs on to the railing and "walks up". Just a few days ago he would wait for us to hold our hand, but I guess he's tired of waiting and does it by himself. Wow.

I've also just read the MOST AMAZING recovery book that is highly recommended reading for any parent of a child with autism, especially if they are in the great debate about which "treatment" to use. It is called Let Me Hear Your Voice by Catherine Maurice (I found the recommendation from autism.com, which is the most comprehensive website on autism, as founded by "The Expert" Bernard Rimland). Catherine (pseudonym) and her husband recovered 2 children from autism in the early 1990s using ABA therapy. It is a heart-wrenching, yet intelligent book and gave me so much hope for Luke. I have to mention one interesting piece of information: she objectively calls into question the Son-Rise Program and it's treatment philosophy. After reading her opinion I, in retrospect, am so glad that we did not go to Boston as we originally planned (remember back in October?).

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I don't think I mentioned that we are interviewing another BI on Monday at 6:15. We're looking forward to increasinng Luke's ABA therapy sessions, adding two afternoons a week. There is no doubt in my mind that this program is God's gift to us, and these women are the key to Luke's recovery.

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I also spoke with our speech therapist about AIT (Auditory Integration Therapy) and she will be bringing me some information on it as she's had some clients try it with limited success. The Speech therapist will also be here on Tuesday morning to show the two BIs some exercises to get Luke talking.

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I've decided to give my lukesjourney.com business cards (with a contact email address) to the Children & Family Therapy Centre so they can distribute them to the newly diagnosed families. One piece of advice I can give right away is to manage your own bank account as it is not as difficult as it may seem. Our BCs and BIs are thrilled that we have chosen this option as the money came in MUCH quicker than having the government write the cheques to them.

March 18
Today was one of those moving moments where all we could do was still and stare in awe as our son made the speech therapist drop her jaw (and almost bring her to tears!). Our two BIs were here this morning as well, watching the ST work with Luke so they can incorporate some language exercises into his regular ABA therapy. The ST began with some exercises in relating objects to written words and asked Luke to make choices between two of his favourite things (bubbles and cornflakes). Not only did he choose and cooperate in amazing ways.... he blew us all away with his signing. She would show a new sign —"same"— and he would try to make the sign. He signed "more" appropriately — when he wanted more (without prompting, without us saying the word). He really gets it. He signs "up" when he wants up; he signs "pen" when he wants a pen; he GOES AND GETS his cornflakes in the cupboard (pushed the cupboard open which is no easy task) and brings them to us; he signs "music" when he wants music; he signs "help" when he wants help; he signs "eat" when he wants to eat; he signs "finished" when he's done with a task; he signs "water" when he wants a drink of water. Everyone was beaming this morning with total pride as this was a day we have all been working so hard for. This is monumental. He really, really gets it. And the speech therapist said he had impressed her when he welcomed her with a "wave" for the first time ever... (she's been with us since Luke was 1 year old... we've been teaching him the "more" sign since he was 6 months old... so the fact that he "gets it" is overwhelming for us).

As a result the ST is keen on stepping up his program and will be coming every Monday until at least the end of April.

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Another great asset is we hired the new BI that we interviewed last night. She will work with Luke in the afternoons on Tuesdays and Thursdays, to step up his program. She seems wonderful and we're eager to have her start asap! We will keep an eye on Luke's energy level. The reason we are eager to press him a little is not only the fact that he seems really receptive right now, but also the fact that we have a very small window of opportunity (years 3-6) to help Luke recover from autism (our ultimate goal). It's difficult to explain to people that 3 months ago Luke did not wave to people or play appropriately with toys, let alone use signing for communication. In acutality, Luke (3.5 years old) is functioning at an 18-month-old level and if we can continue to step up his therapy he has the potential to catch up to current age-appropriate behaviour. This is our hope; and this is the hope that I read about in "Let Me Hear Your Voice" by Catherine Maurice. If anyone wants more information on how the ABA program is broken down (detailed curriculum is listed in the appendices), and to read about serious hard-working success stories as a result of ABA, you must read this book!

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Luke's dad and I have also, prayerfully, decided to cancel Luke's muscle biopsy that was scheduled for April 17. It took quite a while to make this decision but we have agreed that Luke does not need any more physical pain. Last year was a painful year for us with Luke, and yes "no pain, no gain" ... so this year is our "gainful" year and we will not subject Luke to any more surgeries or bloodwork unless absolutely necessary. Let's focus on recovery!

March 27
Last Thursday the BCs were here and did a final test on Luke's matching skills. They gave him 6 brand new images (he's never seen before) which they put on the table, and then gave him "1" image that he had to match (of the 6). Four out of four times he matched the right one! The BCs changed up his program and added new games and activities. They were impressed with Luke's signing and when I gave them major credit, they humbly said the recovery of a child is a wonderful combination of diet, ABA therapy and all the other wonderful therapists in Luke's life.

We spent the Easter long weekend on the coast with my parents and family. My parents noticed definite improvements in Luke's abilities, however he still has a long way to go. He does kiss them and will sit with them sometimes which is so nice for them. My father especially enjoyed taking Luke for long walks around the block. Luke still seems to need something in both hands which makes it difficult to get him to sign or hold our hand, hold the railing, etc. but one battle at a time.

As far as Luke's "regressing" our gut instinct said it was the cornflakes he's become quite addicted to. We decided to cut him off cold-turkey at G&G's which worked, although he was asking for them (signing for them), demanding them one morning... but by the next day they were forgotten. Believe-it-or-not, the eczema that reappeared on his inside left elbow (which we haven't seen since we took him off all dairy last fall), disappeared over the weekend... eczema is one of the most obvious signs of a food allergy... so taking Luke off the cornflakes cleared up the eczema. We've also noticed his skin seemed extremely dry the last few weeks, and that has cleared up as well since he's been off the cornflakes.

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On Tuesday, March 25 we had an appointment with the naturopath. She was pleased with Luke's progress, particulary the fact that we haven't seen any seizures in the last 4-5 weeks. She said this is because he is healing. We shipped another urine sample on Monday, March 24 and the results will take 3-4 weeks so the decision was made to continue Luke on all supplements until we get the results. Then we will know what we can adjust or add. We had a couple questions:
1) Can we give the 4 DMG capsules at one time in the morning instead of 2, 2 times a day? Yes.
2) Can we mix all the supplements together, or will they react with eachother? Yes you can mix them all, EXCEPT the digestive enzymes which will break down the other supplements, so we need to add it last. The Probiotics (10am & 3pm) are to be given separately from everything else (3x a day at meals).
3) Our baby son is slowly weaning and we weren't sure what to give him to replace the breast milk. She suggested goat's milk. It has less casein in it than cow's milk and is milder on the stomach, is easier to digest, and is the least allergenic. We should, however, wait until he is one year old before giving him the milk.
4) I had a dentist appointment and was advised by the naturopath to request a composite filling rather than a mercury one. In the end I chose the mercury as the composite cost an extra $100. There are controversies surrounding both fillings: mercury is said to break down and leach into your system, while the new composites contain the plastic that is currently in question. We will need to keep up on this research and make "the lesser of two evils" choice by the time the kids need fillings.
5) In a few of Luke's diapers we've noticed some powder from urinating. We will see what the urine test results show before we will know for sure what the powder is. I did notice the urine sample we took was quite cloudy?
6) We asked her opinion on the cornflakes. She said we'd have to keep an eye on his behaviour, because if the corn is causing problems, so could rice and other carbohydrates. There is another diet we may need to put him on called the Specific Carbohydrate Diet. We'll look into it if we have to.

The naturopath also gave us B-12 shots that we need to give Luke every 3 days. They are very tiny needles that do not go in very far and are to be injected into the top/outer butt area. We can give them while he's sleeping, and can use a freezing/numbing cream if we like. B-12 is supposed to improve concentration and verbal abilities, as well as coordination. She gave him one right there and he was fine with it; the area did get a little red about 1cm around the injection area, but that was normal and was gone quite quickly. Since Luke had the shot, we've already noticed more confidence in his walking.

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Mom & I went to a health food store to check out some new food options. I found the Food-for-Life bread that was rated as they best gfcf bread available (we don't have it where we live). I also found some delicious vegetable chips and some organic turkey weiners that actually look like real weiners (and hopefully taste good?). And they had some gfcf French toast. I also bought a couple boxes of the Enjoy Life cookies (Snickerdoodle and Chocolate Brownie) which Luke seems to love. You have no idea how exciting it is to find some new food ideas. Thinking of meals for the boys is a constant chore. Dave also read that we need to take Luke off apples and grapes as their sugars can aid the bad yeast growth.

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On Wednesday afternoon, March 26 we went to Children's for an appointment with BioChemical Diseases to see if there can be some further investigation into the "cause" of Luke's epilepsy and autism... and I'm not going to waste my words on the "waiting" we did (ayiyiyiyi... there really has to be a better system). I am, however, officially going to SCREAM if one more professional at that hospital asks me for Luke's history (read the bloody file!!!). I've decided that before our next visit (if we have a next visit) I will write out his history in short form for them to read while we go get a coffee.

Anyways, after a bit I cut right to it: what are they looking for? how will they look for it? and when they find it, how will they treat it? Here's the reply I received....

Because we've been successful with the naturopath (DAN protocol), the doctor was extremely interested in our list of supplements and vitamins, and was curious as to which one specifcially did we think "cured" his seizures? I replied: Who cares? As it turns out they really do care, and they would like to learn from Luke what actually worked, so they can do further research. I mentioned the digestive enzymes, but I forgot to metion the fish oil. She was more interested in the B6. When children are diagnosed with a seizure disorder the first thing the doctor likes to try is "pyridoxine" which is Vitamin B6. Luke tried this when he was nine months old, and it did not work (unfortunately). However, in the last few years more research has been done and perhaps this is now the answer for Luke, and other children. So basically her answer to our questions above were: they test using bloodwork and urine analysis, they are looking for deficiencies, and they would treat it with supplements! Can you believe it? I was shocked and very happy to hear that there would be no invasive tests, no major surgeries, and no medication-treatment. Yay. So we took their bloodwork requisition and urine sample test kit and will get them done in the next couple weeks. The very nice doctor was so interested in our journey that she asked that we write down our resources: so I gave her lukesjourney.com, and autism.com and suggested she read the book Children with Starving Brains by Jacqueline McCandless.

I also did manage to voice my opinion on our lack of confidence in the medical process and medications... and how pleased we were with the naturopath process (not to mention our naturopath's compassion, intelligence and how she treats us and our time with real respect!).

Here's the biggest deal of the day: When we left, the doctor and nurse bent down to look at Luke. When they put out their hands, he shook them and then waved good-bye to them. The doctor looked at me and said: "It doesn't seem like he has autism". I was floored. I took a moment, looked at her and said "Thank You. We've been working really hard on recovering him."

On our way out, we bumped into the second opinion neurologist and told him how successful Luke's progress has been on the naturopath treatment, and how we haven't seen any seizures for 5 weeks. He was genuinely happy for us.

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