"Can I Help?"

My husband and the boys worked on putting up our tree a few nights ago. Samuel usually gets quite excited when we pull out all the Christmas decorations, but he tends to stay on the periphery of activity. I was cleaning up in the kitchen when I heard Samuel ask my husband, "Can I help?" I was so happy to hear this! He helped for a short while and then was off and running again.

Tonight we put ornaments on the tree. He hung around the living room while the other children and I did the work. As each ornament was pulled out we had some commentary to go along with it; who had made it or who gave it to us, when we got it, etc.. I had shown Samuel an ornament he had made at school and was just about to hang it up when he said, "Wait, let me hang it!"

Samuel has his own way of participating in our family's Christmas activities, but he definitely participates! He seems to tolerate differences in our yearly activities as well. Last year we hardly decorated the house at all since we went up to Maine for Christmas. This year we waited a long time to get the decorations out. No complaints so far!

Thanks for the comments and good wishes everyone! The fun here is continuing so I just have to give an update! This morning (Christmas Eve morning) I had to call Santa on emergency speed dial from my cell phone. This was for the benefit of my youngest son. Samuel was horrified, "Oh no, Santa! We're doomed!" was his comment. On our way up to Occupational Therapy in the car he gleefully told me, "Hey Mommy, this is Christmas Eve; Santa comes tonight!" Samuel has never expressed so much interest in Santa verbally so this is great fun!

Refrigerator Mothers

Julee posted this video at her blog "Discovering Nathan" back in November.

This is an amazing video about what mothers of children with autism had to endure just a few short decades ago. Parts of it are heartbreaking and parts are downright chilling, especially Bruno Bettelheim's interview on the Dick Cavett Show.

Things aren't perfect now, but I am so glad that I don't have to endure the popular theory that I caused my son's autism!

This video is long, almost an hour, so please be sure you have a good bit of time before you try to watch it; I don't want you to neglect your kids or dinner or holiday preparations!

Navigating the Maze

Well, our Special Education Advisory Committee Meeting has come and gone. I had a few minutes at the end of the meeting to introduce our yahoo group, which is called "Navigating the Maze." This is a private group, so it's not accessible when you do a search for groups on Yahoo.

A good portion of the people at the meeting signed up for it and hopefully they will share it with others and the word will spread and it will get used. I think it will be a good thing for parents to be able to connect with each other, and for an on-line forum to exist in which those in education and other professions that help those with special needs can be in touch with us also. I have encouraged the Director of Special Education to share this group with teachers so that they can pass it on to the parents of their students.

Here is what the home page of the group says:

The families and caregivers of children with special needs face an often
overwhelming journey as they search for assistance, support, and services. Many
of us who have been on this journey for a while wish to share information and
experiences. This is a group consisting of families, professionals, and other
interested community members in XXXXXX County, Virginia, and the surrounding
area. It is our hope that the information, discussion, and ideas presented on
this group will assist members as they complete their own journey of finding
appropriate supports and services for the individuals with special needs that
they serve or care for.

As of late yesterday afternoon, our region of Virginia no longer has Early Intervention Services being provided to children from birth up to age 3. I think this is unfortunate, but I am not surprised. I have a hunch that due to tough economic times lack of funding is going to grow into a much bigger problem for services than it is already.

I think it is more important than ever for parents to know that government services are not the only means of helping their children. Don't get me wrong here, I WANT children to get the help that they need. When the help isn't there though in avenues that it has been available in the past, parents need to make some decisions about where they are going to put their energy. Will it be into fighting bureaucracies to get them to pay for services or will they work directly towards getting the help for their children?

There isn't a lot out there right now in the form of private help for our children. When there is private help it's expensive, and the question often seems to get asked of us, "why aren't you using your county's services?" It gets frustrating.

What do you think? Is anyone else seeing any problems because of the lack of money in their children's schools or programs? Do you think it will get better any time soon? Will your insurance cover services that your local or state government cannot or will not pay for anymore? Will your insurance pay for services you obtain privately when you choose not to use the services that your county currently provides?

Starting a New Yahoo Group

Tonight I'm speaking at our Special Education Advisory Committee meeting. I will be introducing a yahoo group that will hopefully serve individuals, professionals, and educators in our local area. We especially hope that it will be helpful to parents of newly diagnosed children with special needs who are finding the search for services and supports to be overwhelming. I remember in the early days after Samuel was diagnosed the information I obtained from other parents was like gold! Anyways, wish me luck!

I'd love to hear how any of you reading this use yahoo groups. I'm currently a member on 20 groups! I only receive messages on about 4 or 5 of them, however. Some are about autism, some are about homeschooling, some are local information, and a few pertain to hobbies I have. I think they are a great way to connect with others who have the same interests!

"Come on, let's play!"

I'm hearing Samuel say this frequently these days and it's kind of nice! When it is time for him to go to the playroom in our basement he will summon any or all of his siblings to join him, depending on who is around. I'm not quite sure if he is actually playing WITH them. It could be that he is only trying to avoid being alone downstairs. His siblings will be able to fill me in. In the meantime, I'm liking the direction he is going with this!

Happy Thanksgiving! Letter to Santa

I hope everyone had a nice Thanksgiving! We had two guests and enjoyed our traditional dinner: steak! One of our guests loves to help prepare food. He has been a guest for holidays with our family for years. As the day went on we kept crossing off things from our menu! I gave up on making pumpkin soup, he gave up making a Bernaise sauce to go with the steak and he also gave up making some bread pudding. Just as well, we had plenty of food otherwise.

Samuel does not care for beef so he had his old standard entree, chicken nuggets! He has not been as cooperative with trying new food as he was about a year ago. I need to strategize a bit. Last year a taste of soda in a cup was enough of a "reinforcer" to get him to try sampling new food. That is not the case anymore.

This is the first year that Samuel will be writing a letter to Santa with a specific request that is his own. He has been wanting an X-Box 360 for a while. We told him, "Maybe you can ask Santa for one at Christmas." Now he goes around saying, "I can't wait to get my X-Box 360 for Christmas!" Here's the problem, we are a Playstation Family! We have a PS2, a PSP, and quite a selection of games to go along. While I am thrilled that Samuel has requested something on his own, I just don't see how "Santa" could bring something that is a whole new system to deal with! We are trying to steer his request for a Wii game instead. He has been using one at occupational therapy and his brothers have tried one at a friend's house. Yes, Wii is a new system, but one that the entire family could get some use out of. (I'd love to try Wii Fit!)

My Helper and Current Happenings

My daughter, who just turned three, is in "potty training" mode right now. About all she wants to do to "train" however, is put on a pair of underwear and then sit on her potty chair in front of her "Once Upon A Potty" DVD. Yesterday she wanted to watch it and she asked me to help her find the DVD. I looked in two places it could possibly be and it was not there. She started to panic and I was about to (because there were about 10 other things I should have been working on then and a DVD hunt in our house can be a real undertaking!) but then I remembered that I now have a helper in that regard, Samuel! Lately I have found that his memory for the location of things in our house is quite extraordinary. Before I went any further, I asked Samuel, "Do you know where her DVD is?" He walked right over to where it was, picked it up and offered to put it in the DVD player for her. Crisis averted!

A little over a month ago I became the new Vice Chairman for our county's Special Education Advisory Committee. Cut and paste this site in your browser if you want to find out more about what the role of the advisory committee is (it is copyrighted so I don't want to do a direct link): http://www.peatc.org/Fact%20Sheets/seac.pdf There is a bit of a story behind this which I will not bore you with here except to summarize it briefly. Our committee was in need of a new chairman and I helped to nominate someone that I know for the position. I was quite surprised when the previous chairman then nominated me for the position of Vice Chairman, a position that I didn't even know existed.

Here I am, a homeschooling Mom, now in the position of advising the local public school system regarding special education! This is not a place I expected to find myself in. However, this is a good thing. I am still trying to get used to the idea and am slowly learning what all is expected of me. One of the first projects I am working on is getting together some kind of a website or yahoo group that will contain information and provide a means for parents to share information and get questions answered. Nothing like that exists for our immediate local area yet. I already have a group in place for the support group at my church, but this new group will be able to reach a wider audience. Recent events have shown that this could really be helpful for parents whose children are now reaching the age of "transition" out of the public school system to adulthood. I also think it will be a valuable resource for the parents of children who are newly diagnosed, no matter what their "special need" is.

In the last 6 months I have also come across two other support groups in our area that I am hoping to become more involved with. One is run by a Christian Church. The t-ball league we participated in over the summer was run by them and they are sponsoring a bowling league. What I particularly have enjoyed about this group so far is that Samuel's siblings have been able to come along and participate. That is so helpful! I don't like to "segregate" Samuel from his siblings to participate in things, but sometimes it is necessary. I wish that I could attend more of their support group meetings for parents, but have only made it to two of them so far.

The second support group I have come across is for autism. They run 8 week parent education groups that I have not been able to participate in yet. I am hoping to be able to participate in the session that will begin this January. A social group for children goes on while the parents attend the meetings and I am hoping that Samuel will be able to participate in it, along with his younger brother. This is the closest group to me geographically that I have found for autism so far. I am already on their yahoo group and have enjoyed getting to talk to other people in my area. I attended a Sensory Integration seminar that this group hosted this past Friday and finally got to meet a few people in person! It has been awkward for me having so much to say to these folks when I haven't even met them yet. I was particularly glad to meet the facilitator of the group, who up to that point I had only talked to on-line and on the telephone.

I am trying to have Samuel involved in Special Olympics basketball as well. We attended the first practise two weeks ago. Since I did not have a physical done yet for Samuel we could not go last week. I tried taking him for a physical this week but he would not cooperate completely with his pediatrician so the form went unsigned. We will try to complete the exam the week after Thanksgiving. That reminds me, I better call the coach to inform him that we will not be there today!

I am always complaining about how busy I am and how there aren't enough hours in the day, and now that is more true than ever! I'm being forced to learn time management skills, and am trying to exercise patience more than ever. It's not easy, but I should not complain. I have opportunities before me that I should be grateful for and should take advantage of.

Halloween 2008

A princess, Indiana Jones, Samuel is Darth Vader (this is the first year he wore a mask!), and a Colonial Patriot messenger/soldier (he didn't have a musket here, so he was carrying his pack full of copies of the Declaration of Independence!).

I'll tell more about Halloween later, just wanted to post this photo before it's Thanksgiving!

A Glimpse Into My Life Long Ago

A little off the topic of autism here...part of the long life I had before living with autism and all the other things I deal with these days.

Free time in my late summer and autumn days between the age of 19 and 22 was consumed by my participation in the marching band at Indiana University of Pennsylvania (located in the town of Indiana, Pennsylvania). I was priveleged to be a piccolo player in this great marching band.

Our season started in late August at a week long camp. Then, we practised for two hours 3 nights each week. We had an amazing amount of music and drill work to memorize! We played at IUP football games and various exhibitions in Pennsylvania throughout the fall. During my last years we travelled to eastern Pennsylvania and also to Maryland. The ending of the season depended upon how far the football team went in the division playoffs, usually some time around Thanksgiving (end of November for those of you not in the U.S.).

When I started at IUP in the fall of 1982. I had no idea what I was in for by joining the band. I did not grow up in Pennsylvania, and my knowledge of marching bands was quite limited, having gone to high school for two years over in Europe and then attending my last 2 years at a school in a small town in Rhode Island. I was blown away, this wasn't the typical marching up and down the football field which had been my only knowledge of marching bands up to this point!

This first video clip was one of my favorites of all the excellent numbers we did. This was our opening number the last year I participated: Camille Saint -Saen's Symphony No. 3 in C Minor (Organ Symphony). I was a drill instructor in the band by this point and I remember how amazed we were in reviewing the drill sheets for this number at the beginning of the season. It took LOTS of hard work for us to pull it together!

This marching band went on to do some cool things after I left IUP:

In 1987, the ensemble was the official band at the US Constitution bicentennial
celebration. The attention IUP received there led to an invitation from Jacques
Chirac, the mayor of Paris, to perform at the America's day celebration of the
French Bicentennial in the summer of 1989. In September of that same year The
Legend toured Washington, D.C., with performances on the steps of the Lincoln
Memorial and the Soldiers and Airmen's Home. In 1996 IUP made it's debut
performance at the annual Macy's Thanksgiving Day Parade in New York City,
performing not only in the parade but also putting on a show in front of the
Statue of Liberty. ..from the IUP Marching Band website

This second video clip is of the band playing what I believe is still its signature song to this day, Amazing Grace, while they were in Paris. Later versions of this (which I found on You Tube) just don't sound the same as how we played it back in my day, but as of the Paris trip it still sounds what I remember it sounding like.

We had a terrific percussion section in this band and they usually had some kind of feature each year, with some amazing drill work for the rest of the band (it was interesting learning to march to Ravel's Bolero!). Listen for some popular Classical music themes in this next clip, from 1983 .

Keep in mind while viewing these videos that they were recorded back in the days before digital technology was widely available!

This is all so far removed from my life now, but I'm grateful to Jared, my fellow band member who did the recording and posting of these video clips to You Tube. It's great to be able to see video of the band again after so many years of not having any access to it. Like I already said, this was before the age of digital recording, and was even before the age where too many people had camcorders.

I'm also grateful to Dr. Charles Casavant, who gave so many IUP alumni the wonderful experience we had in the marching band under his direction. This band is now called "The Legend", "The Pride of Pennsylvania," and "The Beast of the East," all names well deserved!

I'd love to hear about what you all did in your younger days!

Incessant Teasing!

Samuel has taken to teasing his "baby" sister! Well, I guess she's not really a baby anymore, she's almost three years old. Just about every time he sees her he gets this devious grin on his face and either says her name (also in a devious fashion), or he reaches out to her with his hand kind of like a "claw" and "growls" at her. The whole time he does it he's just grinning and giggling away. Why? Because he is "rewarded" with shrieks and screams from her!

I'm trying to make her understand that her reaction is what he is really after, it's not so much that he wants to physically go after her. However, in her defense, he has pulled her hair and pushed her down enough times that she does see the need to fight back. How do I convince her that the best way for her to "fight back" to his teasing is just to ignore him?! So far it's not working. Instead, she screams bloody murder and then one of her other two big brothers plays knight in shining armor and some kind of wrestling match or brawl ensues!

We're having countless outbursts of this throughout our days at home right now!

Thank you Maddy!

I have been given an award by Maddy at Whitterer on Autism! Thanks so much! I love Maddy's blog as well, I can't think of another with so much humor and fun!

I would like to pass this award on to Sharon at The Skates Family 7. I enjoy the stories and terrific photos she shares about her children and family, and her cakes are terrific!

I would also like to pass this award on to Miss Nelson at Meaningful Outcomes. I greatly admire teachers who take the time to share their knowledge with parents like she does on her blog.

Additionally, I would like to award Mother of Many, at A Blog on the Spectrum. Hers is one of the first blogs I started reading, going on 2 years ago. She shares lots of fun photos and pictures. I also enjoy reading about her family and the multitude of other entertaining things she talks about!

An Award

Mrs. C gave me the Perfect Blend of Friendship Award. As she described herself when she was given this award, "to claim my fabulous prize of four cyber coffee cups full of mysterious liquid, I must answer the following questions and provide links to five unsuspecting victims:"

1. Do you have the same friends since childhood? I moved 15 times growing up, and somehow I have managed to keep in touch with one person! I have a friend from way back in third grade. We knew each other in Monterey, California, for the year that our Dads were attending graduate school. The last time we saw each other was when we were twelve years old, back in 1975. I lived in Philadelphia, PA and she lived in Doylestown, PA. We still send each other birthday cards and Christmas cards every year. She has been back in California now for over 25 years while I have stayed on the East coast.

2. What do you value most about your friends? Their dependability and trustworthiness.

3. Are your friends your sounding boards? I always thought being able to be a sounding board for each other was a part of friendship, but I've learned a very hard lesson about this in the past few years. Actually, I think my problem had more to do with thinking certain people were better friends than they actually were. I find it difficult to balance being cautious and freely sharing my thoughts. I'm still learning and trying to grow up!

4. What is your favorite activity to share with your friends? Chatting and going out for lunch or coffee.

I would like to share this award with:

Kaber

Tammy

Sharon

Chris

The Bishops Wife

Thank you Mrs. C! My first award!

The Soccer Dilemma and the Breakfast Challenge

We didn't go to Samuel's soccer practise last night. He had been up until midnight the night before. He was dragging the whole entire day, so around mid-afternoon I decided I wasn't going to put everyone through the whole routine of getting up to Winchester (about a 15 mile drive from our house) to have him experience yet another meltdown. After all, I have 3 other children to bring along as well. I hated to give up on going, however.

We simply have too many things scheduled for Wednesdays right now: Occupational therapy in the morning (up in Winchester), then back home, then a trip into town (5 miles the opposite direction) for going to the park for my boys' only regular chance to see friends each week, then the 15 mile + drive up to soccer at 5:30. I don't feel like I can give up any of the other things, so soccer will have to be it for now since late afternoon is a time Samuel isn't used to doing things right now. We'll try this differently in the future..


Now for the Breakfast Challenge. Samuel likes to keep requesting additional food as he finishes breakfast, "Mom, can I have more cereal?" A fit follows if he doesn't get an affirmative answer. My attempt at a solution has been to make a menu on which he checks off his selections. A "second course" is included. It has been quite helpful so far, but was a bit messy because it was done in dry erase marker on a piece of laminated paper.

I just made a laminated menu. We'll try it for the first time this morning. I'll let you know how it goes.


This next photo is the laminated page from which he'll make his selections for the "menu." The next photo is where I'll store all the "icons" I have made. Yes, we eat lots of Malto Meal Cereal! I try to save the "sweeter" cereals for snack times rather than serving them for breakfast.

Soccer Update and Social Skills Update

I'm in another spell of being too busy to blog, but I wanted to give a quick update.

Unfortunately, Samuel's enthusiasm for soccer did not carry forward to the next practise. I was so eager, I had the entire family come along and Samuel was not interested at all. As his helper and I tried to keep him involved he got more and more agitated and finally had a bit of a meltdown, with curse words and all! We've been talking about it with Samuel all week and we'll see how it goes at practise tomorrow night. Hopefully there will be more staff on hand to help. There were not as many staff members to help this past week as there were the first time we went.

A trip to go shoe shopping, along with a trip to an electronic game store, started off very bumpy this past weekend. It ended on a much better note, however, after we took a bit of a break in the car. Samuel even apologized for his behavior later in the day.

Samuel is continuing to ask inappropriate questions as he greets people. The latest question at church to the ushers is, "Are you bald?" Fortunately, they are good-natured about it! As he looked around the church this past weekend I heard him whisper to himself, "Everyone's bald!" A good percentage of the men were! I mentioned Samuel's questions to his speech therapist yesterday and she pointed out that Samuel is becoming more aware of the differences in people, so in dealing with this we need to address that awareness in Samuel. I had been stuck on the idea that he was doing the whole greeting thing wrong.

Can anyone steer me to any good sources of teaching material that talk about how people are different?

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.

End of the Summer Routine, New Curriculum for Samuel

Since returning from vacation the end of last month I would say that our life has not been as structured as it has in the past. Even though we ended up coming up with somewhat of a daily routine (my favorite part of which has been a 30-45 , minute rest each afternoon!), there are spells within the day that Samuel has a little more "free time" than he is used to. On most days I have a helper for Samuel in the morning, and then for a few hours late in the afternoon. It's that in between time without the helper that I find it challenging to keep Samuel off the computer or away from Playstation. I try to get some time with Samuel at the table. We still look at the calendar each day and fill in his journal, along with filling in his "All About Me" book, cutting activities, and some handwriting practise.

I took a bit of time to research new curriculums for Samuel. I wish more than anything that I could follow a Charlotte Mason curriculum with him, but I just cannot juggle all the preparation that curriculum entails, having four children to keep up with. I have enrolled my two other sons in Seton Home Study curriculum this year, and, at the advice of the education consultant, will be using the Lifepac curriculum for Samuel, along with some other materials. He'll be working at the first grade level again. I am looking forward to trying this because I think it will be appealing to Samuel. Also, I will not have all the outside preparation that I had with Samuel's work last year. Anything to simplify my life right now is a good thing!

Here's a sample of what our daily schedule has looked like this past month: Wake up, breakfast, "your choice" (which is usually watching videos/dvds), play (this would be with a helper; or go out, which we have done a lot in the morning this past month), lunch, play (this is free time for Samuel), rest, play (more free time), "work time" (at the table), then a helper arrives and they do playing activities for a few hours, dinner, play (free time, then I may have him join me in playing together outside), put pajamas on, "treat" (an evening snack), "your choice" (usually playing on the computer), bedtime. This schedule will be changing next week, when the "new" school year begins at our house.

My Blog World and Reality Intersect!

I recently had the pleasure of meeting Sharon, whose blog is The Skates Family 7. She graciously agreed to bake one of her specialty cakes for my oldest son's 11th birthday. We live about an hour's drive from each other, but we met each other about half-way. We were able to talk for a few minutes and I also met her two lovely daughters. I wish we could have visited together longer, but it was already well into the evening and we both had families to get home and take care of (plus, I found out just today, Sharon has a lot going on right now!)



Here is a picture of the cake. My son was very happy with how it turned out and so was I. Not only was it gorgeous, but it tasted yummy too! Everything you see on the cake is edible: the number 11 track, the cars, the Happy Birthday banner, all of it! The frosting is buttercream and the rest is fondant. The cake itself was fudge chip, and it was delicious! (Sharon has a picture of it on her blog too).

My special thanks go to Sharon!

One other thing.. Sharon has a cool bumpersticker on her car "Today's autistic kid is tomorrow's genius." I like that!

Some day I hope I'll get to meet other blogging friends too!

How Much is Okay?

This very thought-provoking video was put on You Tube by CS. He has several videos on Vimeo, check them out! I initially saw this on Andrea's blog, "Autism Unplugged."

Are you comfortable with your autistic child rocking, flapping, and displaying other "autistic" behaviors? I have always tried to let Samuel do these things (and I'm talking about rocking and flapping as well as scripting) as much as possible, but I will admit that as he gets older I am trying to develop the awareness in him that these behaviors are different and that it might be a good idea to do them in private if he can. I do this not because I want him to appear "normal" but because his stimming behaviors seem to get in the way of other things he needs to do. I'd gladly let Samuel rock his way through his school work, like Bill Gates was rocking in his meetings in this video. Right now, however, Samuel repeatedly tunes in and out of his work and his involvement with us as he scripts. I'm moving very slowly in talking to Samuel about this. As far as I'm concerned, I have his whole entire childhood (and maybe longer, if necessary) to educate him and help him learn to cope with life!

I appreciate the opinions that autistic people are making public about the importance of behaviors that convention has held as being "non-functional." That seems to not be the case. They ARE purposeful and functional and we parents should be careful when we try to limit them. We have so much to learn about autism. My gosh, we're still just coming out of the days when autistic people were thought merely to be mentally deficient. We're just beginning to understand that they have a different way of experiencing their surroundings and that they have a different way of learning. Let's be patient and try to understand them better before we go trying to change them in ways that are harmful!

Between School Years

I have mentioned before that school is an ongoing, year-round endeavor in our household. We take breaks when there are special events, holidays or vacations. We also run on a relaxed schedule during part of the summer. That is where we are with school work right now. Samuel is participating in a "speech camp" this week and his older brother is participating in a "history camp." Both of these occur in the morning. In the afternoon, after we have had our lunch and taken a rest, I come up with a bit of work for the boys to do. Samuel has been filling in his calendar, writing in a journal, finishing up his religion book. I also found some workbooks at a wonderful teacher supply store up in Maine.



The store where I got the workbooks is called Play and Learn Toys and Teaching Resources and it is located in Freeport. It has become a family tradition to visit while we are on vacation here. My children love it for all the cool toys. They have a fun Thomas the Tank Engine display and it kept them entertained while I took a long look at the teacher supplies. I am always so tempted to buy all kinds of posters, workbooks and bulletin board supplies, but this year I restricted myself to just a few workbooks and stickers. I will have Samuel work on the two books shown in this photo during the month of August. They are both from Carson-Dellosa Publishing. I really like the "All About Me" book. It is 64 pages long and in it he gets to draw all kinds of pictures and fill in blanks to tell about himself. It's a pre-k to grade 1 level and it is perfect for Samuel. It's easy, the pages are visually "do-able" for him (no color or distracting pictures) and the assignments are short. Also, there is a sticker chart built in to the back cover of the book. I am hoping that Samuel will enjoy filling it in and feel a sense of accomplishment. I'm looking forward to him completing the pages where he tells us what his favorite color is, and what he wants to be when he grows up. He doesn't usually talk about these kinds of things on his own. (In the past he has answered "firefighter" when he is asked what he wants to be when he grows up. I'm curious to see if he'll say that again. It's hard to know if he really means it. He never demonstrates that outside of being asked that question. I wouldn't put it past Samuel to just say an answer to get people to stop asking him the question.)

The Scissor Skills book is also very easy, at least it starts off that way. It looks like it will get much more appropriately challenging as he works through it. I ended up getting scissor skill books for Samuel's younger brother and sister as well. I never would have allowed my two oldest boys to try scissors at age 2, but I am comfortable letting my little girl, age 2, do so now. I make sure she only tries it while I am close by at the table with her. She just loves "working" at the table like her big brothers do!

My big job for the month of August is to write up a new IEP for Samuel, choose and order curriculum materials for him, and organize work for my two other sons. I already have their books. This is the first year that I am using a pre-organized curriculum for both of his brothers, in which I "enrolled" both boys and will send off some of their work for grading. I may end up ordering some of Samuel's workbooks from the same place, but there is no way that he can follow a packaged curriculum.

Maine Vacation 2008

We returned this summer to Midcoast Maine, to Bristol. It is about an hour's drive north of Portland, along Route 1, which goes right up the coast. We stayed with the same friends we stayed with last Christmas. They have an 1800s house with plenty of bedrooms and space for us to relax. They acquired a few animals this spring and my children had a few opportunities to help feed them. I don't think Samuel ever helped with the feeding, but my oldest son helped feed the geese and my youngest son enjoyed gathering eggs every day.

Unfortunately, I forgot my camera! I really wanted to take some photos and share some more of the sights up there. On this trip we took a drive north from where we stayed to Lincolnville. We crossed a narrow stretch of Penobscot Bay over to Isleboro, a small town on an island. We were there for a very quick visit with our friend's son, who is currently working there. The views on the ferry ride were just lovely. We could see some areas to the north where we have driven to and stayed in the past. Nowadays we don't go up that far because the kids don't have the patience to endure the long car ride.

We also visited Fort William Henry. This was an English settlement in the early 1600's, but did not remain inhabited for more than a few decades because the territory was in dispute between the English, French, and Indians. A stone fortification was reconstructed at the site in the early 1900s. It looks like a castle turret, so that makes it fun for the kids to look at. We were able to go to the top of it and from there you get a good view of Pemaquid Harbor. While we visited there we were able to see local author James Nelson's re-enactment presentation of Dixy Bull, a pirate who raided the area in the 1630's. We all enjoyed that.

It rained almost every day of our vacation but we still got few good beach days in. My favorite trip to the beach was our last evening there. We got there as the sun was setting and, in typical tourist fashion, combed the beach for pieces of drift wood and rocks. (I just cannot believe I forgot my camera!)

Now we are back in Virginia and I'm wondering where our vacation went, it passed so quickly!

We took a break from Samuel's visual schedule this trip. I didn't even bring it along, though I did bring a marker board, just in case there were any emergency situations that a schedule would have helped. We did bring along a portable DVD player and a select few videos and DVDs. We also had a DVD player and VCR available at the house we stayed at, so these were all helpful reinforcers to get Samuel through his day and some of the things he needed to do. He did get a bit homesick. Our second night away we stayed in Freeport. As we went into McDonalds to get sundaes (for those of our kids who didn't want a dish of Ben and Jerry's ice cream), he started bawling, "I want to go home! I miss Virginia!" I had to take him out of the restaurant and we took a little walk. We had a conversation about how he felt and that helped calm him down. As we did a bit of gift shopping in the various places we stayed, he was determined to find videos. He went up to several clerks and said, "Woman, do you have any videos?" Sometimes he would be a little more specific, "Woman, do you have any Columbia-TriStar videos?"

Lastly, our friends have decided to rent out their house for vacation rentals. I told them I would post information about it, so here it is! This would be a unique vacation opportunity for anyone who wants to experience a bit of life in coastal Maine that is off the typical tourist path. Kurt and Andrea Rauscher, the owners, also live on the property in an electricity-free home they built several years ago (the rental home DOES have electricity). We have become very good friends since we met them on a previous trip to Maine ten years ago. They are wonderful friends and I know will make terrific hosts to vacationers who stay with them!

Coastal Maine Farmhouse Vacation
Rental
call 207.563.2437
Rent a circa 1800, five bedroom,
1.5 bath house located on a very private 20 acres smack – dab in the middle of
the beautiful Pemaquid Peninsula. This house is located in rural Bristol
within 10 minutes drive of Round Pond harbor, New Harbor, Pemaquid point, South
Bristol, Damariscotta and a host of other Maine attractions. Just an hour
and 15 minutes drive north of Portland takes you to the heart of coastal
Maine. Rate $900.00 per week or longer terms available.
Also
available on this property are the following:
An introduction to living
without electricity (rental house has electricity)
Gardening and preserving
food for the family
Animal husbandry – goats, chickens, geese
Woodworking lessons
Boatbuilding lessons
Sailing lessons
Bronze
casting lessons (view our video on you tube http://www.youtube.com/watch?v=jFOo5EWNl8M
Learn how to
heat your house with firewood

The photo at the beginning of this post is of Muscongus Bay. I obtained it from FLICKR , where it was posted by CA. Thank you, CA, for allowing this photo to be shared! Most photographers on FLICKR have now copyrighted their photos (which I completely understand!), so it was much harder to find things I could legally share on my blog this year. That's okay, I just simply need to remember my camera in the future! Anyways, if you are interested in seeing more scenes of where my family vacationed, you can go to FLICKR, in the "Search" field enter "Pemaquid Harbor", "Pemaquid Point", "Round Pond," "Fort William Henry, Pemaquid, Maine" and you will see lots of terrific photos of the area we stayed at!

The photo of the house is where we stayed, and is the house available for vacation rental. The goats belong to the Rauscher family. They acquired them this past spring and have plans to increase the herd.

John Adams Mini-Series

One of my birthday presents last month was the new John Adams mini-series DVD set. My husband and I were both disappointed that we did not have HBO back in March of this year when it was first aired, so I was thrilled to receive it the day after it was released on DVD.

We are both history enthusiasts and we have ancestral links to the Adams family through my husband. His "branch" of the Adams family left Braintree, Massachussets, and settled in the town of Riga, New York. There is a tombstone in the family cemetery there that references the same nobleman (a knight, if I remember correctly) from Somersetshire, England, who is mentioned in David McCullough's book about John Adams, on which this mini-series was based. We're not sure of the exact link we might have to John Adams or Samuel Adams. Some family members are trying to better establish the family tree so hopefully we'll find out someday! Three of our four children share the names of characters from this miniseries. We also share John and Samuel Adams' strong beliefs in personal liberty.

My children enjoyed watching this series as well, though my oldest son was the only one to watch it in its entirety. There are a few spots that I would not recommend allowing children to see. Among them are the tarring and feathering scene (distant nudity and somewhat violent), the scene where a man's leg is amputated, a scene showing Benjamin Franklin sitting in a bathtub with a woman he's not married to, and we skipped over the scene showing Nabby Adam's mascectomy because it looked like it was going to be on the graphic side.

I would say that Samuel's favorite part was the theme music, which he was singing within a few days after watching it! I may get the soundtrack as everyone else in the family seems to like the music as well. Samuel also got a kick out of watching Samuel Adams. What child wouldn't find it interesting to see someone with their name on-screen?

A particularly interesting feature of this series is the ability to select, in the special features menu, a way to watch it with historical facts shown on the screen. It's similar to "pop-up video." We did not use it the first time we watched it, but have been going through the series a second time with it. I found it to be very helpful in answering some of the questions that I had after watching it the first time.

I really like the actors who play John and Abigail. I had seen Laura Linney in "You Can Count on Me," which I didn't particularly like, but I didn't realize all the other things she has been in and the critical acclaim she has received. I really like how she portrayed Abigail in this series. I had never heard of Paul Giamatti, who played John Adams. I think both actors did a superb job and I look forward to checking out both of them in other films they have been in.

I also look forward to reading David McCullough's book about John Adams. My husband got it a few years ago but I have not read it yet. Some neighbors of ours read it out loud together as a family. I think that's a great idea and I think we'll give that a try after I finish reading the kids some of the "Little House" books by Laura Ingalls Wilder.

Wrapping up the School Year - An Immense Relief!

Oldest son's standardized testing is finished, ready to be sent off for grading. Samuel's work has been evaluated and I have the evaluator's summary letter in hand. I don't yet need to send in any "numbers" for youngest son's work, that begins at age 6 in Virginia. Best of all, I think everything went well this year. My first year homeschooling three children is over and I can still say I think I made the right choice to take Samuel out of school so that I could teach him at home. Not that everything is perfect, we have lots of room for improvement (who doesn't!?), but I'm happy having all my kids at home right now.

I recently went through the exercise of actually writing out the goals and objectives we were working on for Samuel this year. I feel so much more organized now in what we are aiming for with him. The plan I have developed for Samuel is so much more accurate than the school's plan in terms of what we really want him to achieve. Seven out of ten of his goals are related to his life skills. His previous plan only had buttoning, zipping, and controlling his behavior that addressed these things. There is so much more that he needs to accomplish than that, and I have found that educating him at home is the best way to tackle these goals. It was hard to narrow down everything to just 10 goals, there are so many things we are working on with him!

After our vacation I'll be coming up with a new IEP for Samuel and will be busy checking out all the curriculum recommendations I got from the education consultant. All of this on top of still checking out RDI, and everything else I want to do! There aren't enough hours in the day!

Mom's Taxi Lifestyle Revisited!

We've had a busy busy week! Samuel is taking part in a "camp" at the practise where he used to go for Speech Therapy way back in the days before he went to public school. It is only for a few hours, so while he is there the three other kids and I have been hanging out at a park nearby, since it's too far to come home. Then, for a couple of the afternoons we have also had parties going on and in the evenings I have had grocery shopping and a meeting to attend. Every day I have been in and out of the house two or three times. Some people live like this all the time, and I used to back in the days when Samuel went to school. I went crazy then and I am going crazy now. I have gotten used to being a homebody! Not that I want to be a recluse or anything, I just can't take the multiple trips in and out of the house all day. At least it's just for this week!

Autism Acceptance Starts a Big Debate

Finally, a story on a "mainstream" news show about neurodiversity and autism acceptance! Click on the video link below to watch. I missed this when it was on, but thanks so much to Andrea for sharing this on your blog.

I have hoped for the autism acceptance movement to get attention like this for a long time. My frustration with the public perception of autism was one of the inspirations that I had to begin this blog almost a year and a half ago.

I am so glad that Kristina Chew had the opportunity to be interviewed. She is a wonderful spokesperson for us parents who accept their child's autism and I have always enjoyed reading her blog. Hers was one of the first blogs I came across done by a parent who seemed to accept her child as he was.

Ari Ne-eman's quote "anti-cure doesn't mean anti-progress" is terrific. He is right, just because a parent doesn't think his child needs to be "cured" doesn't mean that he doesn't think that they should be left without any education or not taught skills and strategies to deal with their challenges. I think what it does mean is that he has hope, and is willing to rise to the challenge of teaching his child to live the best kind of life that he can. Even on the bad days, he will love his child and do his best to assist. Remember, this is the same job that parents of neurotypical children have. There are just a lot more challenges for the parent of an autistic child.

Kristina Chew stated that, "Acceptance, to me, is the beginning of hope." I agree with this as well. How can a parent have hope if she doesn't accept her child ?

Here is a link to the text of this video clip. I'm amazed at the challenges to "acceptance" that are in the comments after this article. I had to laugh at Diane Sawyer and the reporter in the video when they said "Neurodiversity," there's a new word! Where have they been? This term was around a year and a half ago, which was when I became familiar with it. I'm sure it had been around a while before that too!

Skittle-free at Church!

I am very happy to be able to say that Samuel made it through mass this morning without me giving him any Skittles whatsoever! He didn't even ask for them, and I didn't even realize that this had happened until a few hours after we got home! Not that I would say that Samuel did the best that he has ever done at mass today; he was quite inattentive and I could tell that his thoughts were elsewhere. That's okay though, the first hurdle that I knew we had to get over was for Samuel to be able to sit through mass without any outbursts.

At the beginning of dealing with this, a year and a half ago when we first started sitting in the church (instead of behind closed doors in the "cry room"), my method was to give him a Skittle (fruit-flavored candy that looks like "M&Ms") every few seconds that he was quiet. In the past few months he had progressed to just getting 3 or 4 Skittles during the homily (sermon). Today, I took Samuel out of the church for a short break during the homily. Fortunately, our pastor's voice projects quite nicely to the outside of the church so I could hear his homily without a problem while Samuel had a few minutes to walk around. Samuel really seemed to be needy of sensory things, so I gave him lots of hugs and squeezes, and let him sit on my lap for very short amounts of time.

Samuel is very interested in religion. I would say his knowledge and interest is like that of a neurotypical 4 or 5 year old. He likes Bible stories like The Creation Story, Noah and the Flood, the life of Jesus. He also likes looking at all the stained glass and statues in our church.

We are just finishing a kindergarten level religion book for him, and I'm looking forward to future religion lessons that start to teach him about all that is going on in the mass. I think he is ready to learn about it now that he does so much better about sitting in church. I am hoping that he will be able to receive his First Communion two years from now (the same year that his younger brother will). He may not be able to receive his First Communion in the same mass that his peers do, but I am hopeful that at that time he will have a much better understanding and sense of reverence for this most important sacrament of our faith.

What is the next hurdle? Getting Samuel to follow along, or pay attention, to what is going on at mass. This is going to be tricky. Samuel and I sit in the very back of the church. His behavior is such that others would find it to be very distracting, so I try to stay in the back where he isn't as much of a distraction. People at our parish are wonderfully understanding. I wish that some children wouldn't stare at him as much as they do, but I'm sure that 86 pound almost 5 foot tall 9 year old Samuel moving around like a two year old is quite a curious site to behold! Anyways, back to sitting at the back of the church, it is difficult for Samuel to see what is going on. I think it would be helpful for him to be able to see what is going on at the altar, but I don't feel like he is quite ready to sit up where he would be a distraction. I'm going to think a bit about what we might do. If anyone has any suggestions, or would like to share how their child has learned to better participate in mass, church services, concerts, lectures, etc... I'd love to hear about it!

Until Samuel receives his First Communion, I suppose I'll still keep the Skittles on hand. I may need them to get over the next few hurdles, and I'm okay giving them to him in church right now (we are required to fast one hour before receiving Communion, so edible reinforcers will not be an option once he hopes to receive). However, now that I have seen that he can get by without them, I will make more of an effort to save them for after Mass.

A Favorite Thing: Scripting!

Yesterday we had the pleasure of friends visiting and joining us for lunch. I watched some of my friend's children while she went out for a while and then she returned and visited with me for a bit. Our children are good friends and they had a great time playing together.

Later in the day, at dinner time, my husband had to stay late at work so I tried getting some conversation going at the table.

Me: "What was your favorite part of today?"

Oldest son: "The (friends) coming over!"

Youngest son: "Yeah, the (friends) coming over!"

Daughter: "The (friends) coming over!"

Me: "Samuel, what was your favorite part of today?"

Samuel: "Scripting! Watching videos without the television
on!"

It is very apparent to all of us that Samuel likes to script, he is absorbed in it for much of his day. While I do not want it to get in the way of the things he needs to do, I try not to let it worry me too much. I try to redirect him when I can. While we are at the table doing school work, I will stop and wait for him to pay attention when he is scripting before we continue with our work. Sometimes this works and sometimes we wait quite while. I have noticed that when Samuel has something VERY reinforcing following school work, he is much more motivated to pay attention and attend to his work.

I have talked to a few moms with children older than Samuel who have had this issue to deal with. Some of their children have gotten to a point where they realize that there are appropriate times and places to script. Perhaps they are given a period of time each day where they can go to their room and take some time to script.

Samuel really enjoys scripting, so I don't want to try and take it away from him completely, but at the same time I want him to understand that it cannot take over his life.

Is this an issue for any of you? How do you deal with it?

I have heard that it is best not to draw attention directly to the behavior. In other words, we shouldn't go around all the time saying, "Stop scripting, stop scripting...," redirecting is a better strategy. However, I have noticed in the last year or so that I can have conversations with Samuel about the fact that there are appropriate times and places to script. It's better if I have these conversations with him at times that I'm not correcting him to stop.

Back to Samuel's answer at the table, I'm going to have to find out what he meant by "watching videos without the television on." I wonder if he was refering to scripting or if he was talking about looking at video cases.

Maine is calling.. but I can't go yet!

It happens this time every year, I start to get homesick for Maine! With the exception of our visit this past Christmas, all the trips I have taken up there have been some time between the end of May and the 4th of July. Our trip this summer will not fall within that time frame. We aren't going to go up until mid-July. It'll be so hard to wait that long, but it's just as well that the trip will be later. I have lots to do before then.

I am still getting together a package of Samuel's school work from this past year to send to a consultant. As I mentioned before, I am hoping to have a consultant look at his work to provide an outside opinion of his academic progress. I submit standardized test scores as proof of academic achievement for my oldest son, but will not be able to do this for Samuel since he would not be able to take the standardized test that I usually use, the CAT-5.

Upper photo: the view from Pemaquid Point on a sunny day, taken by rbglasson. Lower photo: wintery view from Pemaquid Point taken by me on our trip last December.

"Mom says teacher let classmates vote autistic son out of class"

I found out about this story from Julee, whose blog is "Discovering Nathan." This story is just unbelievable! I cannot imagine the difficulties with school that will remain with this young boy because of this incident.

http://www.sun-sentinel.com/news/local/treasurecoast/sfl-flpkindergartner0525pnmay25,0,2574622.story

"End" of the School Year Approaches

Education in our household has become a year-round process. While a part of me wishes that we could take a particular day and call that "the end" and have a few months off, I enjoy the flexibility we have in working year-round. We take time off for vacations, and may have a lighter week here or there depending what is going on in our life.

One date I do have to keep in mind, working year round or not, is the August 1st date by which my state requires me to report educational progress. There are homeschooling options in Virginia which do not require reporting of educational progress, but I have selected the option under which I must report. This is going to be a very different process for Samuel than it has been thus far for my oldest son. All I have to do for him is administer a standardized test and report the results to our local school superintendent.

I will not be able to use the standardized test method for Samuel. The past week or so I have been gathering information about him and his work to send to a consultant. I plan to have her evaluate the work we have done so far, get advice on how to better teach him, and come up with an education plan for next year.

This is keeping me very busy and I haven't had much time to post or visit other blogs, but I'll try to get back and do updates of how this process is going.

Social Skills, Starting to Work on Appropriate Greetings

I have been reading short social stories this past week that I typed on "Writing With Symbols" to begin the process of teaching Samuel's to greet others in a more socially acceptable manner. One day I had him read about how we might go about greeting people we do not know. I wrote the story to say, "Usually we do not need to ask people we do not know what their name is." Later that afternoon he exited the car at soccer practise, immediately went up to a woman he did not know, and said, "hello, what is your name?"

Like I mentioned in the comments of my last post, I am afraid that if I point out to Samuel how sad (or otherwise uncomfortable ) his questions and comments might make others feel, he will just add the question "Did I make you sad?" I have to teach Samuel only in positive terms, guiding and teaching him in terms of what he SHOULD do, not in terms of what he SHOULD NOT DO.

We attended a wedding yesterday. Samuel came along to the reception and got along nicely during the entire event with his helper. His new question, after saying hello, was, "Are you married?" Yikes! Once again, I am grateful that so far people have been very understanding and patient with him!

I just got Dr. Gutstein's book in the mail "Autism Asperger's: Solving the Relationship Puzzle" and am reading it as fast as I can so we can begin some RDI activities!

Time to Polish the Social Skills a Bit!

Just when I think it is not possible to feel any busier than I already have been, I reach a new pinnacle! Recently this has come about because two of my sons started playing soccer and I actually have had a few social events to attend (after a rather sparse past year of socializing). I suppose the water pouring out of my living room ceiling (from a poorly built shower above it) and the resulting needed repairs have contributed to this as well.

Anyways, my 10 year old and 5 year old sons are playing soccer. They participate in a league of children educated at home and, thankfully, they only have practise once a week, both at the same time, and there are only a minimal number of games that involve travel. For the first time, well, ever (!!!), I have been able to take Samuel along to the practise field where I hang around for the 2 hours his brothers practise. I had to do this a few weeks ago because my in-home helper was not able to make it that afternoon and my husband could not take the boys because of obligations at work.

I made up a visual schedule of what we would do during practise. It wasn't really anything all that special, I just made sure we moved to a new location every 30 to 45 minutes. Part of the time we walked down to see his older brother play, we spent some time in the car and had a snack, and then we spent some time on a playset (swings, slide, "fort"). Yes, nine year old Samuel stood out a bit on the playset, but he was content so I didn't mind! While we walked from field to field Samuel kicked around his own soccer ball and tried talking to EVERYONE!

On the subject of talking to EVERYONE, I realize that we need take a step forward in conversation social skills! Here is one example: People that Samuel does not know come sit behind us at church, Samuel turns around and says, "Hello, are you old?" Or, "Hello, are you a man? " (This to a woman with short hair!) Does anyone have any suggestions for social skills lessons that are just a bit beyond the basics? I have a Carol Gray book about Social Stories (pictured here )and will look at her site to see if she might have anything more advanced, but I want to see if there is anything else.

School Work , Part I, "Work Time I"

It has taken a while, but finally, as we are entering the last quarter of Samuel's school year, there is a pattern to our school day. On our best days we sit together four or five times at our kitchen table to do school work. I'll talk in this post about "Work Time One", the first time we sit together. This session usually includes CALENDAR, HANDWRITING, ENGLISH, and TIME.



"CALENDAR" is done with an average sized wall calendar, along with a laminated page for the current day. Samuel's job is to fill in information for that day, with velcro-backed pieces that he has to select off another laminated page. First he crosses off the previous day on the wall calendar. Then I might prompt him by saying, "Today is the _______" and I wait for him to say the correct date. After that, I lay the laminated page in front of him that he has to fill in. He then has to look at the other page to select the correct day of the week, month, date, year, and the weather. After filling it in he has to read it out loud. The laminated pages were made by a previous in-home helper. Samuel had another calendar to fill in previously, but this current one was made about a year ago. At first, he had to be prompted EVERY STEP OF THE WAY, and only three of four possible selections could be placed in front of him. When I started doing the calendar with him I could put more selections in front of him, but I still had to prompt him every step of the way. Now, I can place all the selections in front of him and on most days I hardly have to prompt him at all.



"HANDWRITING" involves practising his printing. My goals for this year were to review all the letters with him and to address his problems of placing them correctly on the page. Next school year we will work more on choosing correctly between using upper case or lower case letters.

We just finished reviewing all the letters a few weeks ago. "Y," both upper and lower case, "n", "a", and "u" were also problems. A few months ago I started prompting Samuel to place the letters correctly on the paper by having him read, "I can write neatly between the lines," before he did his exercise. This prompt has helped a bit, he is doing a better job of following the lines on the paper. Now we are talking about where we correctly start our upper case and lower case letters on the paper. At the beginning of the school year he did not like for me to say anything about his writing. It's still tricky trying to say anything to him as he is doing his work. Though it is very slow going, the written prompts (which he reads day after day after day) are better for getting through to him as opposed to verbal prompts to make corrections.

We use "Handwriting Without Tears." He just completed the kindergarten book. I'll take the next month or so to review problem letters, work more with proper letter placement (making up my own exercises), and I will have him start the next level book after that.



"TIME" In this lesson Samuel is learning how to tell time on a clock face. He could tell time on the hour, half hour, and 15 minute marks at the beginning of the school year. I have been trying to teach him to the 5 minute mark. We use a talking teaching clock for this. He does well up to 30 minutes after the hour. For minutes higher than this, he often gets confused about the hour, since at this point the hour hand points more to the next hour number on the clock. So far, the best approach has been for me to write out a series of times he has to put on the teaching time clock. I start at the top of the hour and go ahead from there. At first I only had him try four different times. I just recently moved it to ten times to complete. This lets us try lots of different times within the same hour. As he gets more comfortable with this I will start to fade out the earlier times in the hour, until he can successfully find times like "8:50" . Right now if I was to ask him to find this he would place the hands at "7:50", since at that point the hour hand looks like it points to 8.



In "ENGLISH" I have Samuel completing a first grade workbook. We are currently working on contractions and correct sentence punctuation. At the beginning of the school year I had to re-type all of the lessons from the workbook into a larger font, he could not work out of the workbook. Now we are able to use the workbook most of the time; I use a cover on the page so he only sees the current problem and I only have him do four or five problems at a time.

Autism Awareness Month

As Autism Awareness Month approached this year I was gearing up to write some posts on the subject, but it seems that I have been overcome with a spell of writer's block and busy Mom syndrome, at least for the time being!

Here are a few quotes from things I have watched or read in the last week or prior to that:

"Art is the voice of autism." I heard this on the hour long show that CNN did about autism around the world last Tuesday afternoon. While I don't necessarily think that all individuals with autism are necessarily artists, I can see that art can be a good outlet for many individuals with autism. For my son, music is the form of art that he seems to be most drawn to.

"Finding a cure for autism is like finding a cure for blue eyes." This quote is on the home page of a My Space page done by a teenage girl who identifies herself as Female 15 years old Dudley, Midlands United Kingdom. I like this quote. The more I hear about autism and the supposed "epidemic" of it that is occurring, the more I am convinced that it is something that has been a part of humanity all along, as Roy Richard Grinker shares in his book "Unstrange Minds." This is a quote I have shared before:

This book therefore addresses the clear rise in the prevalence of autism - and, more precisely, the range of conditions now called autism spectrum disorders -- by exploring the cultural factors that have changed our perspectives on children and mental disorders. The shift in how we view autism, in other words, is part of a set of broader shifts taking place in
society.

....the newer, higher, more accurate statistics on autism are a sign that we are finally seeing and appreciating a kind of human difference that we once turned away from and that many other cultures still hide away in homes or
institututions or denigrate as bizarre.

I don't want Autism Awareness Month to be a month of fear and pity, I want to see more Autism Acceptance!

My Little Gentleman

Samuel got his new glasses a week ago today. He is accepting them very well! Every now and then he takes them off and says, "I need a break." (I modeled this request for him when he first got them by telling him to bring them to me and asking for a break from them. I figured that was better than him taking them off and leaving them around the house carelessly) We will set them on the counter and then a short while later, perhaps when it is time for school work again or time to watch TV, he will put them on without a problem!

This past weekend one of Samuel's helpers got married. Samuel and I attended the reception for a short while. I just couldn't help sharing this photo of him in his blazer and glasses, taken just before we were on our way. He looks so grown-up to me!

Celebrating Holy Week

This photo is of Samuel looking at his Bible Story Book.


Samuel loves the religion lessons we do together at home. He has been interested in God, Jesus, Mary, Bible Stories, and other elements of our faith for several years now. He is particularly interested in The Last Supper and The Stations of the Cross, and this has been very evident as Holy Week has approached this year.

I am looking forward to the day that we can go to church during Lent and Holy Week to join in the special services and masses that take place during this time. I thought about trying to take Samuel to the Stations of the Cross this year (our church does this Friday evenings during Lent), but we never did make it. That's okay, I have been enjoying helping Samuel read through a small book we have about it. I think that is more meaningful to him right now than it would be to attempt to have him sit at church in a socially acceptable manner for the half hour or so it would take. I am hopeful that Samuel will be much further on the road to better behavior at church by next Lent and I think it will be easier by then for my young daughter to either go along or remain at home with my husband. We are certainly not alone in this, it is difficult for many people to attend church with young children, whether their children are autistic or not.

We will be observing the Triduum by reading Bible stories at home together and watching special events on television. I'm thankful that Samuel is doing so much better at mass week to week now. We're so much closer to being able to attend additional things at our church now than we were last year, and I'm very hopeful that it will be even better by next year.

Samuel Played An Entire Game!

Samuel's evening routine the past few months has gone something like this: Dinner - Put on Pajamas - Wash Face - (Some kind of Activity with Mom or Dad) - "Treat" - Computer -Bedtime.

The "some kind of activity with Mom or Dad" can either be playing a game or reading to us. The games we have been playing include "Spelling Bee Bingo," Memory Game (using somewhat less than all 72 cards that are included with our games), Candy Land, or Hi Ho Cherry-O. Usually Samuel's brothers join us in the games. Some nights we have great fun and other nights it's a real struggle to get Samuel to join in, especially if the game lasts for much longer than about 5 minutes.

Samuel reached a milestone in game playing last night, he played Scrabble Jr. and he lasted through an entire game with his brothers and me! The last time we attempted this game he became frustrated that he had to put the tiles down in a certain order and he wasn't able to finish the game. Last night he got a little anxious a few times, but it was close to the end of the game and I was able to encourage him from losing his temper.

This was exciting for me because this was a real step forward in the skill level. Most other games we play are at the pre-school level and Scrabble Jr. is for 5 - 8 year olds. Also, this was a step forward in skill level for my 5 year old son, who now knows the letters of the alphabet. It was great to play with all 3 boys!

Too Many Errands in One Trip!

Samuel is eager to get out of the house these days. Now that he is not going out to school every day, he looks forward to his trips to the library, occasional trips to Target, and even going to church. After his vision exam last Thursday Samuel begged me to go to a small shop that he found out sells videos. Since he did so well at the eye doctor I wanted to let him do something he enjoys. My other children were still at my friend's house. I had to go to the grocery store near that shop anyways, so I agreed to take him.

I clearly outlined the conditions of our shopping trip: we were only in there to look, no buying videos. After all, he had a new video on the way in the mail. Samuel likes to e-mail his Dad with requests for new videos (with my help) and my husband had just ordered a Cyberchase video a few days before that.

For ten minutes, Samuel enjoyed looking at the videos and DVDs. He was particularly happy to find a display of Nickelodeon and Nick Jr. videos. It wasn't easy for him to leave these behind without a purchase. After I counted down our remaining time in the store he wasn't at all willing to leave. He grabbed a video and ran to the cashier counter with it. I had to gently but firmly help him take the video back to the display. He yelled and screamed as I escorted him out of the store.

I wish that we could have left the shopping center then but I had to pick up some milk at the grocery store. I knew it wouldn't be an easy venture with Samuel being in the mood he was in. He expects "treats" while we are out. I got him by the donut display without a problem but as we started for the aisle with milk he veered over to some bakery rolls, grabbed one and put it in his mouth. I reached for a bag, put it in and just bought it to save any further trouble that moment. I let him help me put the gallon jugs of milk in the cart. He needs practise carrying heavier items, he practically threw them into the cart! He had several other outbursts before we left the store, but thankfully I was able to pay without too much difficulty.

I am pretty familiar with Samuel's limits in running errands and I admit that I stretched them in this instance! I won't let this take away from my happiness at how well he did at the eye doctor's office!