Awesome Day at Soccer Practise!

Samuel just started playing on a soccer team for children with special needs. He missed the first practise last week because of his EEG, but he was able to go this week. It is being offered by the parks and recreation department in Winchester, Virginia.

Samuel willingly got on the field, lined up for his drills and participated!!! He didn't want me or his helper to go with him! This is really big, after having to shadow him constantly for t-ball this past summer. Granted, he cut in line a few times during the drill activity, and he just had to run a few dozen extra yards before he got back in line, but he was happy to be there and to be playing (and I'm happy for his social learning opportunities!). All that his helper and I had to do from time to time was position ourselves off in the distance a bit to keep him from running away too far. The times he did get away from us he was eventually stopped by a fence and he ended up coming back!

His attention span ran out after the drills, and he didn't know what to do during the mini-games. That was a little tough because he started to lose patience. I really wanted to keep things positive so I allowed him to take a few short breaks. The field they were practising on was next to a baseball diamond that consisted of some lovely dirt so he was happy to play in that during the breaks. He never lost his patience, and he seemed somewhat proud of himself for playing!

Next week the whole family is coming along to cheer him on! I cannot wait! One of my tasks this week is to teach him what the game of soccer is all about! He knows how to kick the ball, but doesn't understand the concept of each team trying to score its own goals.

The photo is of Samuel's entry in his journal yesterday. I have him practise writing the date (he does this after filling in a calendar with velcro pieces), then some days he recalls events and other days he writes about anticipating events. Most days I decide what he writes about, but some days he gets to decide what he is going to write about. He's not a very willing speller, so I was happy that he filled in the word "red" on this page without any spelling assistance.

Might be worth a read!

Kristina Chew just mentioned this book on her blog: Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure, Paul A. Offit, M.D.

I appreciate that there are scientists who are challenging the idea that autism is caused by some kind of toxicity in our children. I'm not a scientist or anything, but I just know that my son's autism wasn't caused by a vaccine, or that it's aggravated by his consumption of red dye #40 or anything like that. I don't have the time to challenge all the ridiculous ideas that are out there, but I'm heartbroken when I see the likes of Jenny McCarthy and her crazy ideas getting publicity. I cringe when I hear parents talk about "curing" or "recovering" their autistic children. I'm thankful to know there are thinking people like Dr. Offit and Roy Grinker (who I might get to hear speak next month!) putting forward what I consider to be much more logical explanations about the autism "epidemic".

Samuel's EEG Adventure

Well, Samuel and I survived the EEG adventure, and what an adventure it was! We braved rush-hour traffic into Washington D.C. Wednesday morning. My driving directions told me to turn the wrong way up a one-way street, which further delayed our arrival. Finally, we arrived, parked the car and entered the building. I got some funny looks at the desk on the second floor when I told them I was looking for "surgery." That was because I was at the wrong hospital! How was I to know that Washington National Medical Center and Children's National Medical Center were both at the same location!? Getting to the correct building entailed another quarter mile walk, where we then encountered lots of construction!

Samuel endured the EEG quite well. He was put under general anesthesia to get the leads "glued" on to his head. The leads were then covered by a gauzy kind of cap, and the wires were covered so that it looked like he had a long stocking cap on. He came out of anesthesia in the recovery area to the sounds of the starting theme song of "Max and Ruby." (Before he woke up he stirred a bit when "Wow Wow Wubbzy" commercials came on) He likes this show, but sometimes he cannot tolerate startings and endings. He weakly attempted a yell, "Turn the TV off!" Problem was, I couldn't, it was the TV in the recovery area of the little girl next to us!

To make a long story short, from the recovery area we were led to another floor to the room we would stay for the rest of that day and into the next. He was to be hooked up for about 23 hours. He had a few spells of impatience ("I don't want to be electronic!" he would yell from time to time), but I was able to help him calm down by talking and doing some gentle sensory activities. We were on the west side of the building where we had nice views of the National Cathedral and the Washington Monument. We could see the high-rises in Arlington off in the distance. We had a terrific view of a brilliant orange sunset that evening! It was a pretty day, much like the kind of day 9/11 had been, and I thought about how folks in the hospital would have been able to see the smoke coming up from the Pentagon that day.

A big help that evening.was the large screen TV on the wall on which he could watch TV, surf the internet, and load movies. I was even able to e-mail a few people during our stay, a very nice feature! Samuel was in electronics nirvana that evening as he loaded up his favorite production company logos (he wasn't much interested in watching the movies themselves)... TriStar, Columbia, Paramount. He did this over, and over, and over. He also spent some time on the PBS Kids website and Nick Jr. We turned the TV off at 10pm to "go to sleep." Ha! He was too excited to sleep! We spent the next few hours shifting around various sleeping locations in the room. Much later, perhaps after midnight, I let him turn the TV on again and he was thrilled to find a "sign off" screen for WHUT (a PBS station in Washington). We "watched" that for a good 20 minutes before I suggested he turn it off and we try to sleep again! He fell asleep some time after 2am!

The purpose of his EEG was to monitor for mini-seizures. We do not suspect he is having seizures, but since he has spells of inattention, his neurologist wanted to do this procedure to rule them out as a cause. I will be able to call her office later this week for the results.

DC photo borrowed from Flickr, photo taken by Matti Mattila.

"N is for ...." A Phonics Lesson with Samuel

We're chugging right along with Samuel's school work, which included the 2 day break we had this week because of his EEG. I often sneak in a bit of school work on Saturdays on weeks like this. This afternoon we did a lesson about the letter N and the sound it makes. My job was to ask Samuel to tell me a few words that begin with the "n" sound. Just in case he couldn't focus enough to answer my question I printed out some pictures from "Writing with Symbols," nice little concrete things like "nest", "nickel", "night." Well, we never had to refer to it because Samuel had no problem thinking of words! His answers? "Noggin!" " Nick Jr." "Nick" "Nextel!" Gosh, I wonder what was on his mind today?!

More Challenges and I'm Overwhelmed!

Life with Samuel has been a bit of a wild ride lately! He started private Occupational Therapy services earlier this summer and I told his therapist that he was having 2 or 3 behavioral outbursts per month. Beginning about 3 weeks ago this number seemed to go up so I started keeping a log of his outbursts and the frequency had increased to more like 2 to 3 PER WEEK. In fact, this past week he had an outburst almost every day.


I'm carefully looking at our daily schedule to determine how we might be able to get things done without the outbursts. Among the culprits I blame this increase on are a change in routine as the summer ended and school was started up and my husband's and oldest son's frequent travelling for racing. At the recommendation of our occupational therapist I am trying to work more sensory activities into Samuel's schedule. They are so easy for me to overlook or brush aside as I try to get things done.

Another challenge we are facing with Samuel is the using of some very bad expletives. I strongly suspect he picked them up from watching things on You Tube, so I'm severely limiting his time on the computer and try to stay in the vicinity as he is on it so I can monitor what he is watching. He knows exactly what I'm doing and doesn't like it one bit! I'm considering moving the computer down to our family room, where it can be monitored more easily than up in my out-of-the-way office.

I am in over my head with keeping up with school work for three children. One thing I like about the new curriculum materials I am using is that I am given lots of guidance in constructing lessons. Samuel has actually had some fun doing his math work with some manipulatives, and my youngest son seems to be getting a lot more out of our time together when I have some kind of lesson planned. I'm just having a hard time adjusting to the amount of time I'm having to put in to the lesson preparation.

Samuel will be participating in a Challenger Soccer league (a league for those with special needs and different abilities) beginning in a few weeks. We would be going this week, but he has an EEG scheduled, for which he'll have to be put under general anesthesia. I have no idea how on earth he'll be able to tolerate the wearing of all the electrodes once he comes out of the anesthesia. He'll be monitored for 23 hours! I'm already talking to him about what is coming up, and am stashing away all kinds of special goodies and activities (like DVDs and videos - what else?!) Any ideas for preparing him, anyone?

Two yahoo groups I belong to have been embroiled in some very nasty discussions lately. It's very disheartening, why do people get so opinionated and so intolerant of each other!? I find I have to just let go of these kinds of things so that I can focus more on what really matters - taking care of my own children's needs!

I have greatly missed posting and visiting all my usual "blog friends," but I suspect it will be a while before I can return to it the way that I'd really like to.