Scripting, Next Chapter

To fill the void I have created in Samuel's life by temporarily removing The Upside Down Show, he is now watching his Bob the Builder DVD. When the DVD player isn't available he is putting it into our Playstation II (this is during time when he has reached "Your Choice" on his schedule). He likes looking up Bob the Builder when he is on the internet and likes to listen to the starting theme song in different languages.

I tried watching Samuel play on the computer tonight and he got very upset "Okay Mom, now you can go!" I'll have to take some time to get him used to having me around, I'm hoping that we can play games together on the computer.

It's starting to get complicated when the boys have free time and they compete over electronic devices to play with! There's enough to go around, it only gets to be a problem when two of them want the same thing.

Autism Speaks - With Many Voices!

Did you happen to see Larry King Live on CNN tonight? He interviewed Bill Cosby, Toni Braxton (the singer whose son was recently diagnosed with autism), Suzanne Wright (founder of Autism Speaks), and several other people.

I do not deny anyone the reactions he or she may have to finding out his or her child is autistic. Just as there is a spectrum of autistic conditions, so there is also a spectrum of parent and family reactions. (I admit that I don't understand some of the reactions and cannot relate to them, but we are all individuals and have varying expectations and outlooks on life) Increasing autism awareness and appealing for help for families of children with autism are good things. I saw both of these portrayed in the interviews last night.

The picture of autism that was portrayed in the interview and in the clips of the video "Autism Every Day" (which were showed between interview segments) however, by no means paints a complete picture of how the population of autistic families is living with autism. It bothers me very much that this picture is incomplete and that the picture that is out there on national television is so negative.

It is time for the rest of us who have different opinions, different outlooks, and different approaches to start filling in the rest of the picture that the public sees. Maybe Autism Awareness Month (April) would be a good time to do this.

I really hope that any parents of newly diagnosed autistic children who saw that interview don't walk away with the picture of despair and frustration that I saw portrayed of autism.

The Regulator in Action

I am on the offensive to deal with The Upside Down Show scripting. Thanks "FarmWife2" for reminding me about strategies that our in-home helpers have discussed with me previously. Like I said yesterday, sometimes its easy to slip into allowing things that might not be the best thing, just because they make Samuel happy.

I had a talk with Samuel's instructional aid this morning and she does let Samuel script during his sensory breaks. I was very pleased to hear that during recess, however, she discourages the scripting so that he can try to interact with his classmates. Now I'm just waiting to hear from the special education teacher to make sure they can verbally remind Samuel during the day that he will be allowed to script during sensory times (as opposed to just discouraging scripting). I think that if he is reminded that there IS an appropriate scripting time he will be more likely to NOT SCRIPT when that is being asked of him. I'm also waiting to hear what she thinks about doing a social story.

Last night at dinner I announced, "Tomorrow morning is the last day that you can play The Upside Down Show before we get in the car." Samuel fussed about that a bit, so I told him, "why don't you play hopscotch instead?" We'll see how that works. In the car this morning Samuel asked, "Can I still watch The Upside Down Show?" I told him, "Yes, you can watch it tomorrow (Friday) afternoon." For now I'll let him watch it and see if cutting out the morning play of it helps to reduce the incidence of scripting it at school.

This afternoon we are going to the park and then off to a "book fair" event at school in the evening. The boys always like going to the book fairs. They make wish lists and I usually let them get one or two books each. This is the first time I'll have an in-home helper with me and that will make it so much easier!

We went from 45 degrees (7 deg. C) yesterday to an anticipated 70 degrees (21 deg. C) today!

Super Scripting

I wish that the word "super" in the title for this posting meant "fantastic," but it actually means "an extraordinary amount." Samuel, and all my boys for that matter, really love The Upside Down Show. I let them watch it on the afternoons when our in-home helpers aren't here, and once they get ready each morning they run outside to play it in the back yard for a few minutes before we drive Samuel to school. Getting to play is a great reinforcer for Samuel to do the finishing touches on getting ready.

I'm seeing signs now that it's getting out of hand. Samuel had a behavioral incident in school yesterday because he just wouldn't snap out of a scripting spell. His teachers didn't know what he was talking about, but a fellow autistic classmate was able to tell them it was from The Upside Down Show. He also scripts an awful lot at home. While we did some homework late yesterday afternoon I also couldn't get him to snap out of a scripting spell.

It's a constant struggle to maintain some kind of balance with the things Samuel enjoys. They quickly turn into obsessions that cause him to tune out. I went through this a few months ago with his videos. When I see this happen I have to create some kind of regulatory procedure. He now has to "earn" videos. I will give him a few each day to look at, after he does something required of him on his schedule. The tricky part is remembering to gather them up at the end of the day and put them away. Samuel now takes them up to bed with him! I try to discourage that and have him keep them downstairs where I can easily put them away. If I miss getting them before bedtime then I just put them away while he is at school.

Looks like I am facing that now with The Upside Down Show. It is going to be harder to regulate this because the other boys like it also. At school the teachers are talking to Samuel about not scripting during class time. I should make sure they have a social story for this, and perhaps see if there is some kind of free time where they would let him do it for a short spell. I'll probably come up with something at home where he can script for a few minutes when he gets home and then I'll have to try to come up with a way of making him understand that "scripting time is finished, time to________" Maybe that scripting time could be turned into a reinforcer.

Appreciating My Husband

Often overshadowed by St. Patrick's Day is the even greater feast during the month of March in the Catholic church, St. Joseph Day on March 19. St. Joseph is the patron, role model, and advocate in heaven for fathers.

In light of the occasion, I took a few minutes yesterday to think of my husband's relationship with our children. While my husband has half-siblings, he grew up as an only child in his parent's household. Because of this I think he is sometimes a bit overwhelmed having 4 children in the house as we do. I think he remembers "home" being a much quieter place than what ours has become! He seems to do best dealing with the children one-on-one, though tonight he took on all 4 while I attended a Special Education Advisory Committee Meeting for our county. He deserves a lot of credit for keeping a baby girl who thinks she is entitled to be attached to Mommy 24 hours a day and has recently discovered the joy of cookies and the ability to ask for them (that is all she says ALL DAY - "gook", rhymes with "book").

Go-kart racing has become the family hobby in the past year. So far only my husband and oldest son participate, but the plan is for this to change as the next two boys get older. It is looking as though racing will be the venue for all of us to be involved in something together. There are plans to involve Samuel this year by letting him try driving. Then next year our youngest son will start.

We don't know what to expect with Samuel. I cannot picture him following the necessary rules to participate, but he could always surprise us! Perhaps if he cannot drive then he could help with mechanical things as time goes on. I'm guessing I will eventually be the fan club and event family organizer. Maybe our baby girl will drive some day too! With any luck I'll at least get to see my oldest son in a race this year, but I don't expect the entire family to be involved for several years yet. I might be kicking and screaming when I do get involved, but I want to act according to what everyone in the family enjoys.

My husband and I bring our own strengths into the family. I sometimes complain about how we don't "work together" enough, but I am grateful for his unique personality and outlook on life. He is much better at bringing fun activity in for the boys than I am, especially as they get older. Dealing with Samuel, and two additional babies since he was diagnosed, has taken its toll on me in that regard, I'm just too tired during and at the end of the day to care about much else beyond the little world of child rearing that I live in. A short trip during Easter and a Disney World vacation are being planned and all I can think of so far is how difficult they will be! If it was up to me I'd probably just spend the next few years catching up on housework. Thank goodness my husband won't let that happen.

Back to Church

This morning was the first time I have taken Samuel to church in quite a few weeks. I think this is only the second time I have taken him to mass since the "Kachow!" incident. In the weeks since then we have either had sick children or were recovering from the time change so Samuel has not gone with me. Instead I have taken baby girl. She is even more difficult to take to church than Samuel these days! I think our family will be doing a split-shift job attending church for the next few months.

I was a bit apprehensive about taking Samuel this morning. When I mentioned taking him yesterday the first thing he said was "I won't hit anyone!" We started off in "the big church." I came armed with a mini-visual schedule along with the rest of my "church survival kit" (see picture above ) It includes a dry-erase board to write short messages (I try to use as few verbal prompts as possible), some saint trading cards, a mini-visual schedule with good behavior prompts, a book of the Lord's Prayer (the only prayer I'm trying to get him to recite - which he doesn't do yet), an inconspicuous sensory toy and a rosary (more conspicuous but visually acceptable in context at church). Oops, I left out an important item in the picture, a small non-crinkly pouch of skittles! We made it in the big church just about as long as the last time we went, into the priest's homily (about a half hour). Samuel just couldn't resist scripting The Upside Down Show. My "whisper voice" written and then oral prompts were losing their effectiveness so I figured it was time to go to the lobby. I had to frequently prompt him to have a quiet mouth the rest of mass. On several occasions he said "Mom I'm having a quiet mouth!" his way of asking for a skittle!

I did not walk up to the front of the church for communion. A priest was able to bring it back to me, and others who cannot walk up. I told Samuel we will not go to the front of the church for communion again until we apologize to the sister that he hit. I talked to the sisters at the end of mass today to try and find out who he had hit so he could apologize directly to her, but the sister that he hit must not have been there, they didn't know what I was talking about. They very graciously told me that it was okay, for which I thanked them, but I told them I still want Samuel to apologize to stress the need of proper behavior and manners.

After mass we then proceeded to "the doughnut store" (a name given by my oldest son when he was two years old). A pretty good week! We are proceeding SLOWLY, SLOWLY at church but it's all staying positive for Samuel so that is good. Not so long ago I never would have imagined that we would be leaving the cry room this winter!

Phonics for Samuel

In our recent meeting to discuss Samuel's progress in academics at school, I brought up concerns about Samuel's spelling. He seems to be having trouble with vowels digraphs and consonant combinations. His average spelling score is 80%, but a recent test, where the "ei" and "ay" vowel digraphs were used, some of them also having one or two consonant combinations, had a score of 20%. A second attempt resulted in 30% correct.

Samuel's teacher agreed to start working with him on phonics. I asked for some worksheets that I can use to work at home and they came home the next day.

This is the first time that I'm aware of Samuel working with phonics. He learned to read sight words in kindergarten and first grade. I believe that much of his ability to read is by memorizing words. When he is reading , he often looks at a word and just takes a guess as to what the word is. In these cases he doesn't appear to take any time to "sound out" letters.

I just tried a worksheet with the "long a" vowel sound this morning. Before doing the worksheet we talked about vowels sounds (including a review of what a vowel is, and that letters can make more than one sound) He did pretty good. The worksheet entailed choosing the appropriate word from a choice of 6 to fill in blanks that made up a story. He did well at understanding the context and then writing in the correct words.

I'd like to hear about what others have encountered with their children when they are learning to read. I'm wondering if teaching phonics will help him do better on his spelling tests.