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15 . 27 . 29




September . 2010>

 


 

September 15
I hate not keeping up more regularly as I feel I'm missing important moments. Life has been so busy with work that time speeds by so quickly. Luke's dad and I celebrated 15 years of marriage last week and enjoyed 2 days away from the boys. It was incredibly relaxing and even more importantly, refreshing. I feel better starting a new schedule with school. Luke is now attending kindergarten every morning. He's been a few days already and has absolutely no comment about it (we're working on his "recall"), so I'm in the dark which is weird. He has an assistant, for now, and the teacher herself is really great. On the first day the new Learning Assistance teacher stopped me in the hallway and asked if I was "Luke's mom"... we chatted about my blog and she was so nice and easy to talk to. Yesterday, she called and we discussed a back-and-forth book in which we'll communicate simple comments and concerns. We will have a meeting soon between all the therapists and discuss Luke's "IEP" (Individualized Educational Plan). I was also assured that Luke will probably not have a full-time assistant but this is considered a good thing. It is better for Luke to not have someone "velcroed" to him constantly, but for him to play and interact with the other children as naturally and independently as possible.

The first day of kindergarten Luke was a little "white-faced" (shouldn't have made him wear a white shirt!). He sat on the mat next to the other kids, but was sitting with his back to the teacher as he watched me try to sneak out the door. Eventually I said a final goodbye and the assistant helped him sit straight forward. He was a good sport. And he's been great ever since. I have to mention he's beginning to comment on the world around him more. One day we got out of the car and he said "It's raining", and the next day as we walked across the field to school he said "The grass is wet". He says them so nonchalantly that it's easy to miss them... but when you catch him at it and let it sink in, it's so awesome.

Luke and Joel were good sports about us leaving them for the weekend as well. They both talked to me on the phone and said "I love you" (ok, Luke with a little prompting). It was great to know that they were fine while I took some long overdue quality time with my husband.

I will admit to a blue funk the last few weeks. Perhaps psychologically because Luke's off to kindergarten, and my apron strings are getting stretched further and further away. I also realize and acknowledge that when such a burden's been lifted after the intensity of the last few years, there's a tendency to fall into a pit of depressed exhaustion. While I'm not enjoying it, I do understand it's part of life and I am trying not to be too hard on myself. I know it's hard to believe, but some days I still get upset that he has so far to go still and these thoughts can get me down. It's not humanly possible to be optimistic 100% of the time, so I'm learning to cut myself some slack. Regression and lows are all part of the journey; they suck, but are inevitable.

And of course, to top this off I thought I saw a seizure. Luke has not had a seizure for 2.5 years and we were anticipating an EEG in October with the hopes that we could wean him off the medication. Now, it seems Luke will be on anti-seizure medication for so much longer than any child should be (he began medication at 9 months and is now 6). This is horribly saddening for me.

We went to Dr. Wagstaff today and I voiced my fears. He tested Luke and was surprised that there was a flare-up in the cerebellum area of Luke's brain. He has given us a bottle of homeopathic drops to help with this and hopefully this should work. We can only pray. I did mention my instinct that seizures and a wheat allergy are related as we've given Luke a bit of wheat the last few weeks (as birthday cakes) and suddenly a seizure shows up? This is similar to when we started the wheat-free diet and the seizures stopped... too coincidental? Dr. W. mentioned there is a correlation between wheat and seizures. Interesting. I may need to research this more before seeing the neurologist. Dr. W. mentioned that Luke is showing more and more eye contact, connection, brattiness (good thing) and conversation, which are all huge positives. We got Luke tested for sensitivities to peanuts and mustard (two of his latest obsessions) and he's fine. I mentioned Luke's fingernail-biting, and Dr. W. said it would probably be a passing phase and was due in a large part to the many changes that have happened recently. We have to appreciate that transitioning to kindergarten can be extremely overwhelming for a little boy with autism. He generally always seems so aloof and unconcerned, but the little signs like nail-biting should have been a giveaway of his underlying anxiety. Dr. W. continued to praise me for the efforts and counsel me to be easier on myself. Fortunately, we had the weekend to recuperate and regroup and I feel better able to cope. Work has slowed a bit as well, as I turn more focus to Joel and our quality time together before he runs off to school too!


September 27
I've been concerned the last few weeks about Luke's safety. Last Friday we went on an errand downtown and the kids were running around the front foyer of the store we were in and then as we were heading out (and I was distracted, still talking to someone at the front counter), the boys ran outside and Luke ran right onto the road. Joel shrieked and I ran to get Luke and thankfully he was okay (no cars were coming). It scared me so much. I discussed this with both of them at length once we were safely in the car. Luke seemed to understand that it was a dangerous thing to do... but I'm not 100% convinced. I was very proud of Joel for being a great brother and watching out for Luke (and told him so). Other freaky incidents have included scary dreams. The two boys and I were at a water's edge on a small inlet but there was a drop-off very close to the shore (about 2 feet away). Joel and I were looking at starfish or seashells (can't recall) and before I knew it Luke was in the water grabbing at one, but lost his footing, spun around and fell backwards (face up) into the water. I reached to grab him but he slipped further backwards and I couldn't reach him. I came up for air screaming, while he looked wide-eyed and continued to slowly fall deeper and deeper. On top of this horrible nightmare, Dave dreamt that he was watching Luke walk towards him and then saw him have a seizure. I have also seen a couple seizures in the past week, since the first one. We sadly discussed the repercussions of this and will have to let the neurologist know next week when we go to Children's Hosptial for his EEG. Is it a correlation to wheat or his diet? Is he outgrowing his medication dose? What's going on? Time to pray again and hope that the seizures go away again. He had been seizure-free for 2.5 years. This is devastating news. As for the safety issue, I will be looking into local programs that will focus on teaching Luke about danger. I was also concerned that he jumps in the pool with no concept of drowning... so this needs to be addressed and taught. For Joel it is innate and understood. And as far as the seizures go, we will continue with the homeopathic drops from Dr. Wagstaff, labelled "cerebullum comp", that will hopefully get rid of them. We can only pray.

On a bit of a bright side, he had a friend call him after school one day. It was really sweet to have a little boy say "Is Luke there?" I brought the phone to Luke and coached him to say "Hi P" and tell him he was watching tv. It was a short but sweet call and it warmed my heart a little.

That's the other very interesting thing. Luke is watching tv. More and more, and requesting certain shows. He likes "Toopy and Binoo". It's kind of cute to have the two little boys sitting side-by-side on the couch watching cartoons.

A new thing that Luke did today was when doing a maze with our BI, Ms. S., he traced the right path her with her and just his finger... then picked up the pen to do it all by himself... and he said "I want to do it backwards" and he proceeded to draw the maze from the end to the beginning. Hmmm...

He has been a bit obsessed lately with the fall-off game again. For the most part, in his downtime (when he's not in kindergarten or ABA session), I let him play. This involves dropping a balloon from our (split-level) third floor landing, over the bannister, to the main floor down below. He has memorized that he can only throw "balls, balloons and ring toss" (which is a repititive phrase of his). Whenever he or Joel has done something wrong he runs up to us crying "I need to go pee". He doesn't need to go pee, haha, so I don't know why he says this (distraction from the bad behaviour I suppose?). He is quite aware of good and bad behaviour.


September 29
I HAD MY FIRST CONVERSATION WITH LUKE! We were sitting at the table having a snack, and out of the blue Luke says "Don't go out of the classroom".... so I bit, and said "Why did you want to go out of the classrom?" and he said... "BECAUSE I wanted a drink!". He has NEVER answered a why question before, and has never used the word because! Woo Hoo... I'm going to mention this at our IEP meeting this morning!

IEP Meeting... went very, very well. We discussed Luke's issues and goals: focusing on socializing, proper play, fine motor skills, speech therapy (including using words not sounds), and gross motor skills. LUke's BI, Ms. S., and I had prepared an updated list of Luke's accomplishments (click here), which everyone appreciated as they were unaware of some of the things he could do. I just advised them that he was passive, knew he was cute and would play them. They laughed. The sad thing is that the seizures were confirmed by the assistant as she saw a couple. So together we will keep track and I will inform them of the results of all our doctor's appointments this coming week (naturopath, opthamologist, and neurologist). We can communicate via email. The kindergarten teacher was pleased with Luke's behaviour and noted that so far, he was keeping up with the rest of the class. After the PT, SLP and OT get a chance to review him, a more specific program will be set up for Luke, which may include other children than need a little extra assistance as well (Example: the assistant can help 3 children at a time with learning to print their names). It was a great meeting, lots discussed in 45 minutes and I couldn't be more pleased with the calibre as well as the encouraging and optimistic support that Luke is surrounded by. It's very exciting. We did decide that Luke would stay home from the day-long field trip to the salmon run. Luke's dad and I will take both boys one of these weekends as there's a record-high number of salmon spawning this fall (and they've been studying the life cycle, etc. in kindergarten!). Oh, and one last thing... I mentioned "the conversation" to the women and the assistant mentioned there were issues with the kids all seeming to want to go outside the classroom to the bathroom, but not sure where the "drink" part came in?

At home, he definitely seems more chatty, which is fun. We've discovered that when he gets caught up in his repetitive jaunts, we just have to repeat what he's saying but really really slowly and then he stops. Interesting... it's like he's caught up in a frenzy and can't stop until we slow it down for him. It's nice to have a new technique to help him.

Ms. K. (BC) was here to observe him and we spoke about a social story around "hands in the mouth". Luke does this far too often. She will also put together some information for teaching Luke more about safety.


Luke

 
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