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April 3

So we've given Luke 4 B-12 shots so far. One night we tried it while he was sleeping and he woke up and we freaked that we might break the tip off into his butt (it was dark too and he ended up with a scratch), so we decided next time to try it during the daytime. We had watched a YouTube video of a guy giving his kid a shot and he'd say "I've got to hurt your heiny now" and the kid would pull down his pants and take the shot. And so we just explained to Luke what we had to do and he didn't even flinch – really no big deal at all. I can't say that we've seen "miraculous" differences, but there has been a noticeable confidence in his coordination. He pretty much immediately began walking faster. I was quite shocked to walk at my regular pace and have Luke actually keep up (usually have to slow right down to Luke's comfort pace). Even Ms. A. said the walk to the end of the block was done in an effortless 5 minutes rather than 15. Okay, so a little miraculous! Especially since 3 months ago Luke would barely walk 10 steps before he'd stubbornly go on his haunches and cry until we picked him up.

Luke had a session with the OT on Tuesday, in the gym, and he is starting to walk over more obstacles. He even went on the crash mat (a 8' square "pillow" filled with large square pieces of thick foam so it's very bumpy and uneven). Ms. S. also brought out a huge hit: 3 coloured see-through balls and when you hit them lights flash inside. Luke loved them and tried carrying 3 around everywhere he went. He also threw a few bean bags around when asked to, and walked up the ramp with no assistance (but much prodding), and put a "noisy" ball into a toy that let the ball roll down and through tunnels to the floor. He also sat on the swing with me for awhile and when we put his flash-balls in a container for safe-keeping, he seemed to be a bit scared of the swinging and rocking; but when we gave him his flashy-balls back so he could hold them in his hands, he was fearless... could care less what we did to him on the swing. So it's more than obvious now that the "things in his hand" are his security. Very interesting. I am also working with him on taking his shoes off; and will try to teach him to take off his clothes over the next couple weeks. He will sometimes pull the shirt over his head, but that's about all he'll do by himself.

Toilet training. Ayiyiyiyiyiyiyi. He will not pee on the toilet. He will sit there as long as we want, but he will not pee. I spent Saturday morning in the bathroom with him, with no pants on (Luke, not me :), for about 3 hours after he drank tons of water, and still he wouldn't pee. So we're going to try using only underpants, which I think we'll start on Monday. He did pull at his pants this morning to let me know he was wet, which is a first, so maybe he's clueing in (he's been in training pants for months now and although they are meant to make him feel the wetness, he did not seem to mind). I asked if the BCs had any other resources like books or videos that might help and they'll see what they can find. My only request is he figures this out before preschool in the fall — haha.

Music therapy went well according to Luke's dad. Luke took a while to get into it, but Ms. E. said his response time was even quicker than before. He still is very gentle about banging on the drums or hitting a key on the piano. She always seems very interested in the naturopath route, which is so nice. She also provided a CD with her singing three "action" songs so that the BIs could hear them and sing along. One of them has "to the front, to the back, to the see-saw side" lyrics that we can use to move Luke's body on the peanut ball.

The physiotherapist will be coming next Wednesday when both BIs are here to show them her techniques and exercises. Isn't that just great!

The signing has been phenomenal. Luke can now sign the following words: water, same, star, pen, crayon, cookie, more, monkey, lid, open, up, fork, eat, finished, music, block, in, want, chips, and book. We try to add one or two a day. Today I built a block tower in the shape of an "L" and signed the letter "L" and Luke copied me. That was pretty cool. We had a team meeting this morning, including our newest BI, Ms. M. and, among many other new programs, we're going to begin teaching him letters of the alphabet starting with L, U, K, and E. I also learned this morning not to prompt Luke with the verbal words "say" or "sign" but to communicate only with the signed word and we actually had a silent conversation while everyone else was talking. How cool is that. I love it. And I "signed" us all up for a free Sign Language class for 4 Wednesday nights from 7-8:30pm at the Children and Family Therapy Centre starting April 23. Yay.

The new BI, Ms. M. enjoyed a session with Luke and one of the BCs, Ms. K., this afternoon and it did not take long for her and Luke to get to know eachother. She's very gentle and very sweet, and a great asset to the team. Luke was super-tired and cranky at the end of the day as this was his first "full-day" of ABA therapy, so there will be a bit of adjustment to the new schedule.

At the end of the day the BC informed us that one of our BIs will be leaving in 2 weeks time. This comes as no real surprise as this BI is young, beautiful, a very funky dresser, and is heading for fun in Vancouver. Don't blame her one bit... I remember doing the same thing when I was her age. So, while we are sad, we wish her nothing but the best. I am really really going to miss her. I'm not sure if these women really understand how deeply we care about them, and how much we appreciate all that they do for Luke — and most of all the hope they've given us. So I just want to take a minute to thank them all again and again and again. Our BC has a new interventionist lined up for us to interview so we will call asap and keep Luke's program running as smooth as possible.

I have to mention Luke's new bedtime ritual. For the first time in his young life, he crawls into bed the "normal" way, puts his head on his pillow and lies the right way... and wants his big brown stuffed dog cuddled up beside him. Luke has never paid any attention to stuffed animals and has always just sat in the bed (usually at the end) without blankets or pillows. He would eventually lie down later. So for us to be able to "tuck him in" with blankets overtop and a pillow under his head, bring tears to my eyes (okay, I'm still crying from the previous paragraph!).

So a great and amazing and wonderful week... and still no seizures. Thank you God.

April 4
Have to quickly mention that when I finally went in to get a crying Joel out of his crib this morning, I was shocked to see Luke by Joel's crib. Luke rarely gets out of bed, and it honestly seemed like he was trying to console Joel. And when Joel went crawling out of the room, Luke motioned for me to get him. It's so great to see these two bond.

April 11
Last night at 2am Luke had the hugest poop ever. Everywhere. Enough said. It seemed like a yeasty-poop, but I'm not sure where he's at with the detoxing of the bad yeast. I kind of thought he was done, but maybe since we've taken him off corn, apples and grapes he's going through another purge? Who knows. Did I mention Luke's dad slept through the entire cleanup :).

On a brighter side, yet still toilet-talk (sorry)... we're pretty sure Luke peed in the toilet this morning! I think we freaked him out a little with our hoot and hollering... but afterwerds he seemed pretty pleased with himself. Of course he did not repeat this feat, but we rejoiced anyways. Not even sure if he understood what he did, but hey we need all the encouragement we can get after months and months of patience. He peed later on in the bathtub and giggled while daddy made a big deal and made sure he noticed/knew what he was doing and that he has to do that in the toilet. Oh please let him figure this out... please.

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On a personal note, I've chosen to stay at home for another year... I was gratefully able to request a leave of absence... took me a while to realize that this is where I belong. It's the right thing to do.

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We also met with our new BI and she will start next week Thursday. She seems enthusiastic, so we look forward to a new personality in the house.

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The PT, Ms. B. came by on Wednesday to show the BIs a few physical therapy goals. They appreciated the hands-on training and started implementing some of the suggestions. Luke now walks up the stairs one step and then the other (on the same step), so we're trying to get him to step up one step per foot (alternating feet). We also have a "ladder" made out of pool noodles lying on the floor for Luke to step into one at a time. He loves to sit and bounce on the big red ball, and we continue to push and pull him sideways, forwards, and backwards (to music) so he can learn to balance. We need to also work on his upper arm strength by getting him to do the "wheelbarrow" and also roll on his stomach on the ball with his arms stretched out and push forward to force his arms against the floor or couch (lunge forward and push up with his arms). One other exercise is to continue encouraging Luke to reach way up and get up onto his tip toes, and then squat way down to pick something... these are precursor movements to jumping.

April 12
Luke had ARCS today (playgroup for children with autism) and Ms. D. was impressed with his improvements since the last session in November. He was more focused, better at imitation, had great signing, and actually did some colouring (which he refused to do just months ago... remember when he prefered to "roll" the crayons?). We met a couple of other mothers, one who had been working with a local naturopath and had been trying the supplements, the other was interested in the diet and willing to try new ideas. I gave both of them my lukesjourney.com cards and look forward to seeing them every Saturday for the next 8 weeks. It's so nice to finally connect with other parents!

We went for a long walk in the park today and bumped into a client of mine (a phsyiotherapist!) and her friend (an event promoter). We got to talking about Luke and autism in general and they both seemed genuinely interested in our success with Luke (gave them his cards). Ms. L. was going to contact some of the local newspeople to do a story or a tv segment about Luke. Wouldn't that be exciting?

On a "valley" note: Luke seems to be going through something. (I believe life is made up of valleys and mountains and we've been on the mountaintop for awhile with Luke's seizures gone and his behaviour improving). He had another huge yeasty-poop today and an unbelievably long nap... from 1-5pm. He seems a little out-of-it and extra tired (bags under his eyes). He must going through another bad-yeast die-off or something because he's even regressed a bit in his actions. Like today, he wanted to play the "scissor-leg" game that we used to do every night many months ago. He also flapped his hands a little in frustration yesterday. And his reaction/response time has slowed quite a bit. So we're hoping he rides this out and rises above again... extra prayers please. Have you ever seen the movie "Awakenings"... when Luke is like this I get scared that we'll lose him again. Freaks me out a little, but he's come so far and the naturopath says it always gets a little worse before it gets better. I didn't mention this before but we've taken Luke off grapes and apples as they are higher in the sugars that the bad yeast loves to feed off. And we've stopped giving any kind of refined sugar... I used to give 100% maple syrup on his pancakes, and brown sugar on his rice, but for the last few weeks he's had none of these. We've also cut back on his fruit intake (to two servings a day).

April 14
Luke had quite a few yeasty-poops on Saturday and Sunday , so we stayed around the house and kept an eye on him. So it's definite that he's going through another detox as his skin is also very dry and bumpy.

Today he seemed great again. Back to his old smiling, quick-to-respond self. One thing I found so amazing the other day was he was looking at me intently, trying desperately to get me to look at him! Wow... this from a kid who at one point would never look us or anyone else in the eye. He is so much fun, and I try to explain to people that you can talk to him like you would any other neuro-typical kid and he gets it. I can ask him to do something with my back to him, and he does it.

We had the Speech Therapist here this afternoon and she was amazed time and time again. Not only was he getting shapes, words, and puzzles correctly, he was signing up a storm. "More", "Mommy", "Out", "Star", "Want".... She would show him a sign, and he would try it right away, and then 5 minutes later would use it again appropriately without prompting or asking or reminding. Very cool. We've been teaching him a couple letters (written and signs), so she had an alphabet puzzle and picked out the "L" from a group of letters. She was also impressed that he often looked at her to see if he was doing something right... and you can just watch him "think very hard" to perform a task correctly. I was very, very proud. Also for the first time ever, she enjoyed reading him a book from front to back. We had a discussion afterwards about food and it's potentially toxic effect on the brain and, as a newly-diagnosed celiac, she could not believe how much clearer her mind is (focus, energy, memory) since she's been eating a proper diet.

April 17
Luke was a bit fuzzy in the morning, but was bright enough to give the new BI a hard time. He wouldn't do what she asked... he was totally testing her, until she finally got him to respond appropriately. According to the BCs Luke is doing amazing, and they've changed up some of his programs again. They often do a "maintenance" check also... a quick "re-test" of the things he's learned, and thankfully he is retaining the information. He seemed very upset, tired and whiny after his nap so I gave him some Advil because his one molar is coming in (it's a HUGE bump under the skin and it's been bugging him for weeks). According to our afternoon BI, Ms. M., Luke was the best he's ever been for her! Even with all new programs. She said she really enjoys working with him. The one thing I did watch today was that he's been imitating sounds which I think is a really big deal. The BI went "Blppppht" with her lips, and Luke actually imitated! Perhaps he will slowly learn sounds/words. Everything in good, patient time.

He is still having some yeasty-poops, but is letting me know that he needs to be changed by tugging on my hand. The BC said this was an important part of toilet-training.

Tonight I left him on his stool at the sink in the bathroom and told him, as I walked quickly out the door, "Come to bed, and don't forget to turn off the lights on your way". He didn't hesitate to follow and turn off the bathroom and hallway lights on his way to bed. He no longer needs for us to get his undivided attention and say things over and over until he "gets it" anymore.

April 24
A lot to catch up on. I contacted another woman from a GFCF diet website and we got to "emailing". She mentioned that she had great success with the Epsom Salt baths (as far as speech), so I've started giving Luke a bath every night (at least 5 out of 7 nights as per the naturopath's orders — note: when the naturopath tells you to do something, do it). I've given him 5 so far, and although I don't notice any major changes with his speech, I'm going to continue them and keep everyone posted.

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The 3 BIs and I had a wonderful time last night at our first Sign Language class. It was quite intensive and overwhelming and apparently if we come away with 50 signs per session we're doing alright... which tells you how many were thrown at us in the hour-and-a-half that we were there. Ayiyiyiyiyiyi. I was so wired when I got home, Dave thought I'd been drinking. I don't think my mind's been that stimulated in at least a year! I taught/used a couple with Luke this morning and he tries to imitate, but his hands are too little to get it quite right, so he has his own "luke" version.

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Luke enjoyed another music therapy session yesterday and Ms. E and I were both impressed with his cooperation and use of instruments and sign language. Click here for her summary of his progress.

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We think Luke's finished with his yeast die-off; and he seems much brighter-eyed and happier the last couple days. I can always tell a good day from a bad day when he gets up, goes to the bathroom and puts the insert into the toilet right away (without us asking). A bad day is when he just stands there, and still does not comply even though we ask him to... he's "somewhere else", perhaps still dreaming, but it's usually indicative of his slower response time all day.

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One very cute accomplishment that I have to mention is that I asked Luke to put his shoes by the front door a couple days ago. He put them on top of my running shoes so I showed him how to line them up next to eachother. When I asked him to do this yesterday he lined them up just like I showed him. How adorable.

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The B12 shots are quite the success as far as Luke's confidence in walking/running. He seems more coordinated. He used to walk with his shoulders lifted, which he no longer does. And he keeps up with our pace when walking with us; as well as endures longer and longer walking distances. One mom in the ARCS class said her son totally benefitted from a large-size trampoline. We checked prices on this and may hunt around for a used one at garage sales this spring. BTW I had to learn how to do the shot the other night as Dave was working late, and it was no big deal at all.

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Since Luke seems to be doing so well, we've decided to put our foot down at meals. Luke is no longer allowed to sit on our laps... he must sit on his chair for the entire meal. He must also eat with a fork (the whole team has been practising "poking" with a fork for a couple weeks now). Luke must have a minimum of 3 bites per meal. Most meals he's not very pleased with this new arrangement, but he's coming around. It is much less annoying for us. When he sat on our laps he would just grab our thumb whenever he wanted something... so now he has to do it "himself" and sign for water or more.

April 30
Luke amazed me yesterday when I asked him to get a roll of toilet paper from the cupboard and he got it and brought it to me right away! This is the reason we have kids, right?

Healthwise, h e's been feeling much better, but is fighting a chest cough and still has the odd yeast-y poop.

Music therapy was very eye-opening. One of our BIs came along just out of curiosity, and we were both shocked that he actually did the action signs to the song "Slippery Fish". We've been singing him this song for weeks at home and had no idea he could sign along! He also played the drums and the crashed the cymbal a lot, and played the piano more than I've ever seen him. He also touches his chest when it's "his turn" and waits patiently when it's Ms. E.'s turn.

I had a nice long talk with Ms. M., another mom, and she gave me a few leads... here's the Yahoo website for British Columbia parents (and others) who are discussing biomedical alternatives to autism. I haven't had a chance to read through anything yet, but I'm excited to find some people to talk with! Yay! Here's the link: http://health.groups.yahoo.com/group/BiomedicalTreatmentforASDinBC/

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