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June 9
Despite the "breakthrough" of peeing on the toilet a couple weeks ago, Luke has decided from now on to pee and poop only in bed (in his diaper or training pants). He will hold it, despite personal discomfort until he's in his bed. I have talked to a few mothers about this and I'm not quite sure what our next move is. We'll discuss it with the BCs at the next meeting. The best part was going on the internet and discovering a huge world of mothers with four-year-old boys that were still not toilet-trained; nice to know we are far from alone. The bonuses are that he's aware and he's in control.
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Luke's dad has been able to squeeze the word "dad" or "daddy" out of Luke lately (takes a lot of teasing and persistant pestering). It's a great feeling. And on occasion, spontaneously, Luke will run to the gate to greet daddy when he comes home from work (when he hears the garage door open). He is becoming quicker with the smiles when he recognizes someone, and quicker with waving.
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In the morning I have been "catching" Luke standing by Joel's crib and interacting with him. This warms my heart. Luke will run to his bed when I "catch" him, so I'm trying to explain how much I love it when they play together. Luke and Joel can often be left together to "play", although there can be the typical fights over toys and jealousies over mommy's attention. I love anything that resembles "normalcy"...
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I also noticed the other day that Luke no longer grinds his teeth.
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The BI today took Luke for a walk and was so happy to see some major changes in Luke since the day she started with him. In January he would not go down the steps, and would only walk 10 steps (barely) before sitting on his haunches and crying. Today he not only walked down the steps all by himself with no encouragement (holding the handrail), he also waved back to two people who waved at him... AND he pointed to a bus that was driving down the street. The walk to the mailbox and back was quick and pleasant, and the BI was over-the-moon with the leaps and bounds Luke has made. She also mentioned that today Luke said "No", clear as day...
June 10
Just wanted to mention that the OT, Ms. S., trained us on the brushing/compression technique. This is where we take a surgical brush and brush, with firm pressure, Luke's arms, backs and legs. We then do what are called "joint compressions" which are little pressure pushes on all his main joints (shoulders, elbows, wrists, fingers, hips, knees, ankles). The purpose of this to stimulate his awareness of his body, and in turn he will feel more comfortable and confident with his movements. It seems quite hokey, but I have to admit that since we've been doing this every two hours for the last 10 days, he seems much more active, lively and physical. One BI also mentioned that he seemed much brighter during the lessons right after the brushing/compressions. BTW the whole brushing/compression thing takes less than two minutes, so it's pretty easy. I've read a bit more about sensory "diets" (tactile or touching, pressing, pushing, pressure) and it seems like just the right thing for us to focus on for Luke right now. His mind seems very savvy, but his body sense seems very wary. It blows me away to think that something so simple can have great results. Luke usually likes to sit around in-between sessions or in the evenings. He seems to lack energy and prefers to lie around on the couch, play with books or just literally "hang around". This last week he actually seems more hyper... spinning in circles (not in a bad autistic way), actually riding (moving his feet on the floor) Joel's riding bus toy, bouncing off the couch, running around and around and generally keeping actively busy for longer and longer periods.
June 13
Luke's spontaneous signing is getting better and better. He knows the sign for toast, but I haven't signed it in a while and he signed for toast at lunch today. Then we learned a new word "ham" and about 15 minutes later he signed for ham. Wow. He also now does two word signing more often. He often asks mommy to sing "Slippery Fish" and I've been trying to teach him the sentence "Mommy, Sing, Slippery Fish, Please" and today he signed 3 of them without asking. We also asked him on the weekend (with signs) whether he wanted to go for a walk or in the boat, he signed "boat"... so daddy took him for a very special father's day boat ride on Sunday. We were also eating chips together and there was a really big chip, and Luke sponteously signed "big".
Today we went swimming because he's having a swim assessment next week by Sunnyhill from Vancouver. We wanted to get him more used to the water and the intimidating pool. Luke is just a generally cautious and trepid kid, and so the swim session began with tears and unhappiness, but by the end he was walking by himself as deep as possible (at which point he'd grab the BI). He wasn't too into kicking but it's all still quite new for him, so we coerce him gently... the PT was there helping him feel more comfortable about lying on his back and more secure with a little boat that he could sit in. He is still quite expressionless, but he'll crack a very small smile every once in a while. The best part is he "eventually" does get over his fear and becomes more and more brave.
One of the BCs came by and watch a session to see where Luke is at. He totally impressed her with all of his programs and so there will be new changes when the group meets again in two weeks. At one point the BC was trying to shove a firetruck into a too-small opening and she said "stuck" and Luke spontaneously signed "stuck". At another time he was given the letters D and J and asked to "point to" or "show me" J, and he was looking at his hands and not really paying attention. It took a couple minutes of pestering before they realized he was trying to sign "J" (which is tough for a kid because it's drawing a j in the air with your pinky finger). At one more time there were 6 different pictures of animals on the table and he was asked to point to them. He pointed to them all correctly. AND he got all the puzzle pieces correct along with the animal signs when they played the animal puzzle. Yay Luke.
June 18
This morning I went into the boy's room and Luke was standing at Joel's crib. Turns out he found a bag of toys and decided to give them to Joel by dropping them into the crib. I also found a couple packages of wipes that I guess he thought Joel needed. Luke also picked out a nice shirt for Joel to wear today.
With the BIs every day, Luke has learned to sign "mommy" to the point of distraction. If he's bored or thinks he needs a kleenex or his tooth hurts, he signs "mommy". Most times it's legit, but sometimes it's just a game.
Last night we gave Luke a B-12 shot (which is becoming more and more stressful to administer). Unfortunately it didn't go in (the needle did, but not the B-12 — don't ask). So we gave another one to him in the morrning, and boy is he active today. He definitely has more energy and is signing up a storm. I think we'll give them to him in the morning from now on. We had considered stopping them altogether because he would get so upset crying and wiggling and jiggling, making it as difficult as possible. We spoke with the naturopath who warned of regression if we stopped suddenly, so we've figured out a new "holding" system that will hopefully work better from now on. After the shot this morning, he was actually curious about what the needle looked like, so we explained it to him. Maybe he'll be okay with it from now on? I'm such a positive thinker!
June 20
Just a quick update because my jaw is still on the floor. Luke was almost finished his lunch today and he signed sleeping, totally out-of-the-blue. So I asked if he wanted to go to bed for a nap and he got off the chair and went downstairs to his bed. Wow. There was no talk about nap, or sleeping... granted it is a daily routine, but he just learned the sign for sleeping the past couple of weeks in his program.
Okay, it's half an hour later and he didn't sleep... BUT he did cry out to me at the bottom of the stairs (which means he left his room which is a first!!) to let me know he pooped in his diaper and wanted it changed. So I changed him and then asked if he wanted to take a nap or come upstairs and he wanted to come upstairs so perhaps he no longer needs a nap? Ayiyiyiyiyi.
June 27
Okay... I don't quite know what's happening, but Luke seems like a typical kid. There's a totally new awareness about him... he seems to be a regular 4-year-old. Wonderfully and amazingly typical. He fights at mealtimes, acts up, stalls, uses excuses, playing up his cuteness, signs for "mommy" when the program games are too hard, tries to sneak away from the program table, and lays on the crocodile tears bigtime. He comes out of bed in the morning and entertains Joel with toys and antics, and yesterday for the first time in his life actually peeked into our room to find daddy... saying "come get us, we're ready to get changed". For the past week he constantly sneaks out of bed every night, and we've had to put him back in at least 3 times. Usually he's pooped or peed in his diaper, so I think he's telling us to change him please before he goes to sleep. He can take his shirt off over his head (doesn't pull his arms out of sleeves yet), and tries to pull down and kick off his pants. I found him with no pants/diaper on the other day (a nice brown "surprise" in his diaper... didn't take us very long to find it... just had to follow the smell). He is physically more active, energetic and daring. He spontaneously signs so many words we can't keep track anymore. He says "Daddy and Mama" if you prod him enough. He cries when Joel cries. He wants attention when Joel's getting attention. He gets the Bible and sits on Daddy's lap and looks at the pictures (okay, not all the time... the elephant bookmark still interests him more!). He folds his hands to pray 95% of the time and keeps them folded until he hears "Amen" 75% of the time. He plays with toys appropriately. He chooses clothes for Joel and himself. He pushes Joel in the stroller on the way to the park. He is feeding himself more and more with fork and spoon (with coaxing from us); and is drinking from a cup 100% of the time (with just a little coaxing from us).
At first I thought the brushing therapy is working these wonders, and then I thought maybe the "Bio-Strath" homeopathic drops that were recommended by the health food store were the miracle... but then I quickly realized that the whole combination of amazing treatments and therapies is really, really, really working. No one thing on its own is the cure. Luke's dad and I talked about it the other night, and the only way to kind of describe it is as an analogy: Luke's electrical system was not working properly similar to a car's. We've been creating new wiring in his brain with all these different treatments, until one day the one tail-light works (a major necessity for communication), and a couple months later the other tail-light works... and a couple months later the power-steering kicks in.... etc... (btw we're waiting for the "radio" to turn on... aka talking!!). This is the wildest ride I've ever witnessed in such a beautiful vehicle (I think Luke's car is metallic orange with red racing stripes)! Anyways, we are all in awe, and need to stop a moment and thank God for all these continued improvements. Luke's got a ways to go, but he's going to get there.
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We took Luke swimming this week because a woman from SunnyHill (a division of Children's Hospital) came to Kamloops to do assessments. Luke did not cry this time when he went into the little wading pool and actually ventured on his own after a short time. He also impressed us all with his calm demeanor and he allowed Bonnie, the PT, to help him lean back against her and then roll-over onto his stomach. Towards the end of the hour he had a life-jacket on and he walked around quite comfortably and even went from a floating position to standing; and even started to kick a little. The assessment person will send a report complete with photos and I will post it here when we get it. Now is the perfect time to teach Luke to swim, and if we go at quieter times to the pool, Luke will potentially learn how to swim. We'll be taking him every two weeks to keep working on it.
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