November 8, 1998
THEN.. I found out Thursday at Craig's conference that his associate Judy is going to be gone for at least 2 weeks because they have found a tumor on her adrenal gland and if it is malignant, it is fatal. Oh dear. What next. We have really come to value Judy, she is doing a great job with Craig and he has really accepted her athority. His sub will be a girl who has worked with him a lot and he LOVES her. He actually asks for Dawn. But I am not sure she is assertive enough - I think that is why he likes her :-) But Steph Verhelst (the special education teacher/director) says that she is getting better at is and thinks it will go fine. I am not really worried about that, Craig has been pretty cooperative lately. I am just heartsick about Judy, I pray this is benign. Craig's parent/teacher conference was a breeze. He seems to be doing just fine in all areas and his Kindergarten room teacher really seems to like him. She didn't say that, but there was a certain fondness and enthusiasm when she talked about Craig and how well he gets along with the other kids in her class. It sounds like Craig does indeed spend most of his day in the regular classroom which is nice to know. They are going to be starting a new program with him called: "Handwriting Without Tears" which everyone is very excited about. They start out by just having him build the letters out of shaped blocks and very gradually work into writing the letters. They will also be doing a lot of desensitizing his hands by having him work with lots of textures. I have to say that I have come to have a lot of respect for the whole team who is working with Craig. At first I was apprehensive that they would not have the time to give Craig the specialized program that he needed and I was doubtful that Steph Verhelst really understood how to break down the tasks for him in the same way that the preschool teachers did. But I have been proven wrong and for now all my fears have been put to rest as Steph does indeed seem to have a real feel for how to set up his work system. He has also been able to complete a lot of tasks right along with his class which is nice. So that is school. How was your halloween. Ours went very well and Steph and Craig had a ball in their penguin costumes. I will be sending you some pics as soon as I get them back. Little Bennett slept right through it all. My parents came here and stayed with him and gave out our treats while we took the kids out. Craig was so funny! He was better than Steph about remembering to say "Trick or Treat" and "Thank you!" Once he even said "Happy Halloween" and we hadn't even told them to say that he just came up with it himself. Can you believe how Fast Christmas is coming?! We have been doing some shopping. I got Craig the Mr. Potato head who tells Knock Knock jokes. It is really cool. It is stuffed and when you push on his head he tells a joke, it is interactive/voice activated so that the child must repond for the joke to continue. It tells 50 jokes. It should be great for Craig since he loves knock knock jokes. Lately he is into making them up and they are not funny except that he always laughs at the end of the joke which makes us laugh. He just makes up the jokes about whatever he sees in the room, the funny thing is that I distinctly remember Steph doing the very same thing at about his age. And she still can't tell a joke!!
November 22, 1998
Craig is coming along very well in school, despite his rotating associates due to Judy's absence. I think he is actually enjoying the change. This week his teacher showed me how he can read several simple word books. They are a lot of repeating and basically memorizing, but they teach him to follow the words with his finger to work on word recognition through repetition. I remember Steph doing those when she was in Kindergarten. Nice to see him working on the same things and doing soooo well! He read 6 of them to me and can do several other, I guess. He really liked reading them to me once he got started.

Something nice he did today was that he let me read two books to him! He actually initiated it and enjoyed it. The first was a short rhyming book about pets and the second was a book with more words on each page, about a paragraph per page. This something that I thought would never happen! He has crossed lots of milestones like that this year. He also likes to take baths now, which he used to hate. I remember a time when he would not sit down in the tub! Bath time was a night mare with him screaming through most of it. That magical day when we got him to finally sit down seems like a million years ago now. Then there was a long time when we had trouble washing his hair and only within the last few months has he fully cooperated with that and will now let us pour the water over his head and he will even tip his head back on command! What an accomplishment that was and what a relief! This past week he has wanted to take 2 or 3 baths a day! I am not sure why that is, but I am not arguing :-) He likes to splash a bit too much, but I can live with that.
Craig was very cute tonight, he was singing "On Accounta I Love You" with the Shirley Temple Sing Along video. He and Steph love that! They usually dance with the whole thing, but I had never seen him sing like that. He was following along with the words at the bottom of the screen singing just as clear as could be. When he would get to the part where he sang "on accounta I love you," he would look at Stephanie. It was priceless. He has been very loving and affectionate today. Even more so than usual and he came up to me frequently for a hug.
Craig ate lots of toast today. You will find in my writings that Craig has a a lot of "food issues" mainly that he won't eat most of it! Though you would never tell by looking at him, he is quite husky. His main diet is dry cerial, his favorite being Peanut Butter Captain Crunch. He also really likes Pizza, but only certain kinds and if he is not really hungry it must look a certain way or he won't eat it. He often only wants to eat the crust and the sauce. He used to only eat the meat (beef or sausage) but that has totally switched this past year. His other favorites are Doritos, Sour Cream and Onion Pringles, chocolate, and some cookies. There are some others that he eats if the mood strikes him. It is no use trying to force new foods either because he will gag and throw them up. Sigh, that is our hardest battle yet.
December 1998
December was a busy month! IT jsut flew by! So much to do and so little time...
Craig and Steph's Christmas programs were in the early part of the month. We were a bit nervous about how Craig would do up there in front of hundreds of people. Not that he would embararass us, but we did not want to feel that his behavior would distract from the performance of the other children. I had talked about it with his teachers and they wanted to give him a chance to try and we had agreed that if his behavior became disruptive they would remove him immediately. He had had some problems with rehearsals because it was so overstimulating that he got very excited and was stimming a lot with his hands and he was grabbing the other kids. So the day of the program came and we were there to watch. He got up there with all the other children and lined up quite nicely. I had thought his associate would stay up there with him, but she did not. That made me nervous. As it turned out he did fine, but he did choose to sit down on the risers while all the other children stood-up. It was rather funny, really. There he sat with his chin in his hands looking bored stiff. After one of the songs was over his assoc. went up and motioned for him to stand, which he did... until he thought she wasn't looking, then he glanced her way and sat down again. Of course she was laughing, he thought he was being so clever. So he sat for the remainder, he did a bit of hand stimming, but not much and I did see him start to sing one of the songs. The problem with the songs is that they have gotten away from the traditional ones that he knows and the ones they sang were rather hard for kindergarteners, I thought, and not nearly as much fun as "Jingle Bells." :-) I must add that Stephanie did wonderfully and I could tell she was having a great time singing with her class.
Our Christmas pictures were not a success... Craig willingly sat for them (after I promised him we would go and look at Christmas lights if he did,) but he would not smile much for them and when he did he said "Cheese!" and in the photos that comes off as though he is yelling or mad. Well, at least I tried. I chose the best one and sent them anyway with a note that read: "If a picture paints a thousand words, then this tells what our Christmas photo session was like." It turned out that people really enjoyed the picture, it was real.
Craig was not as much into Santa this year as he had been in previous years. He really enjoyed the lights, tree and decorations though. He makes Christmas even more special because he is even more excited about it than other children. It is all very magical to him.
Craig did pretty well at opening his gifts this year, but he got a little tired of opening the ones on Christmas morning. So we did not push and just let him open them as he wanted to. I think it is a bit much for him getting all those packages at once. It would probably actually be better for him to have him open two or three a day than to push all of them on him at once. We may have to rethink that next year. He liked his gifts but he really liked Bennett's Teletubbies the best. He loved them! He carried them every where and was very possessive of them. It was a good thing Bennett was not old enough to care. Craig also really liked the Veggie Tales book my parents got him. Probably the thing he has played with the most since Christmas is the "Kitchen Littles" that Stephanie got. They have had such fun playing with the little food and dishes. For some reason Craig has always loved pretend food and play dishes.
So all in all Christmas was pretty great. I can still remember a time when we could not get Craig to open his gifts and we wondered if he ever would. Looking back on Christmasas past, we have so much to be thankful for with Craig. He is talking, playing, learning, and using his imagination... all things we wondered at one time if we would ever see.
As we finish out 1998, I am reminded of the title of a book by Joan Lundan, "A Bend In The Road, Isn't The End Of the Road." So true we have found in our lives the powerful lesson of taking an unexpected turn and realizing all the wonderful things that await just around the bend.

January 15, 1999
We were a bit concerned about how Craig would react to returning to school after two weeks of vacation. But once again he suprised us and did just fine. He didn't even have a rocky first day and actually seemed happy to be back at school. They have recently purchased a large therapy swing that Craig gets to use every morning. He loves it. He does have a little trouble waiting for his turn some days, but that is coming along nicely and today he was very good at waiting. I think it is great practice for him to have to wait for something he really wants to do. He has had some trouble in the past waiting in lines at amusement parks, etc. We are planning a trip to Disney this fall, so he needs lots of practice waiting.

Craig lost one of his front teeth yesterday! It has been hanging by a thread for a few days now and last night it fell out when he was wrestling with daddy. I remember how I fretted over his losing his first tooth, worried that he would be very upset by the vast change in how his mouth felt. But when he did lose his first tooth it was no big deal, his reaction was much like any other child's. This tooth leaves a pretty big whole in his smile, which he likes to stick his toungue into. The hole is soon to get even larger since his other tooth is very loose too. Oh, and I must mention that his big sister would not be outdone and had me pull out her loose tooth last night too. So the tooth fairy had to make double payments today :-)

We have never taken Craig to a dentist, and I know we should. He is very orally defensive and I just can't imagine how we would get us all though it. I keep hoping that someday he will be more accepting of that sort of invasiveness, and he does get a bit better all the time, so maybe some day..... In the mean time I do keep checking him for signs of cavities and thankfully, I have not found any yet.
Craig's reading skills are coming along wonderfully! I am so amazed. He is reading several familiar words that I am aware of and who knows how many more he knows that I am unaware of. I just test him out on ones that he is reading in the little books that he brings home. I write the words on sheets of paper to see if he knows them out of the context of the familiar stories and sure enough he does! I also get him to read the words to me that I find in other books. Wow! I need to have more faith in him, I never imagined he would be right on target with his kindergarten reading skills. I actually feel like he is right on target with the other children as far as his scholastic skills are concerned except for the fine motor stuff like coloring and writing which he does not enjoy. He is bringing home lots of color by number though that he has completed. He is not coloring in the lines, but he gets it in the right areas. By looking at the work, I can tell he is only doing it because he has too.
I was told this week that they are changing his afternoon schedule. He had been spending about the last hour of the day in the TLC (special education) room for one to one teaching with the special ed teacher. Well... I guess he has been expressing displeasure (in his very 'Craig' way) to the sessions. When he was placing the 'one to one' work card in it's place he would exclaim "YUK!" and then he would take it to the finished spot and say "DONE!" So Stephanie (the teacher) decided to try going into the kindergarten room to see if she could work with him in there instead. I think he is liking that better. He is doing very well with the classroom situation most of the time. He did ask to leave and go for a walk one day this week because some of the children were playing some music he did not like during free time. Craig gets very emotional if there is melancholy music playing.

February 19, 1999
Craig has been making some exciting progress lately!
First of all I will tell a bit about his report card, which was just fine. He is doing well in all areas and there were no complaints or concerns. Kindergarten report cards are rather vague but it did say that he has made nice progress in his interactions with the other students. We are going to be having parent/teacher confrences in March and his IEP in April and those meetings are always more informative than report cards.

Something that I am excited and relieved to hear is that they are cutting out Craig's schedule. Since he started preschool at 3 years old he has been on a picture schedule at school. While it has been helpful in getting him to follow the school routine, I have felt for some time that he would eventually not need such a schedule. Craig is quite verbal and his receptive language is good enough to follow instructions without the aide of pictures. We have been encouraged in the past to set up a such a schedule at home, but have always resisted taking such a step. I really didn't feel the need, we have never had many problems in getting Craig to do things as long as we are firm. I never felt there was a need for charts and routines that we would all have to follow. I can see the value in these schedules for non-verbal children or those who have a lot of difficulty with transitions, I just did not feel it was something that we needed to commit to. And as much as possible we would like to keep life at home "normal" for our other children without everyone having to follow a strict schedule which centered around Craig. ANYWAY... we were excited to hear that his teachers have recognized that he no longer needs the schedules and picture charts and he is doing very well at school without them. I am not sure if they have gotten rid of them all, but they had pretty much phased most of them out a week ago. It is funny when I go to pick him up, he still goes over to where the schedule was to get the "go home" card because it was such a routine to him.

Today I was suprised when I went to pick up Craig to find that he had actually drawn a picture of himself jumping rope in art class! It is the first "real" picture he has ever drawn. He has drawn shapes, letters and numbers (but not very precisely most of the time) and he can write his name, but he has never drawn an actual picture. I was so thrilled!! Of course I came right home and scanned it for this page :-) I hope it is the first of many.
I have been receiving nice reports on his progress and one parent came up to me this week in the post office and told me how much her daughter loves Craig. She said her little girl came home every day with a story about Craig and always tells her what a good friend Craig is. So sweet! I am very pleased with how his teachers and associates have incorperated the other children in his class into his learning, especially the social aspects. It means so much to know that the other children enjoy having Craig in their class and he is not viewed as a "problem" or and outsider as so many children with disabilities have been viewed in the past. We very fortunate to be in a school that believes in full inclusion when possible.

So those are some exciting things that have been happening with school lately. At home we have become the proud owners of a 3 year old cat named "C.C." Craig loves her! He always wants to know where C.C. is and wants her to be in the same room with him. She is a great cat for our kids, very gentle and tolerant.

March 1999
We just had Craig's parent/teacher conference this week. We got glowing reports :-) Craig has made so much progress in the past few months. He is now cooperating quite readily, sitting quietly in group time, playing well and sharing more with the kids in the centers, writing all of his letters fairly well, drawing more and needing less and less scheduled activites (he goes with the flow quite well.) We were amazed to see how well he can write his letters and numbers without any assistance. I had no idea he was doing so well with what has been his hardest area by far. Craig' s favorite center is the kitchen and he has had a hard time sharing the pretend pizza with the other children in the past, but I guess that is becoming less of an issue. His kindergarten teacher was very pleased by how far he has come and how well he is meshing in with the other children with minimal prompts and fewer tantrums to get him to complete his work baskets. Of course next year will be a real test with harder concepts and more and more table work. I feel confident though that everything will work out all right, he has become quite good at rising to the occassion and suprising us at every turn with his capabilities. He brought home another picture he had drawn this week. Much like the other, a self portrait, but on the back of this one he had drawn a cloud, sun and a rainbow. He loves rainbows. I am pretty sure he is getting the letter sound concept too, because when I point out words for him to read to me, he does not get the work right all the time but he almost always says a word that starts with the same letter as the one I am pointing to. Of course, we are excited about his progress that seems to go pretty much across the board. We have had a door opened for us financially so that we could not get the Secretion infusions for Craig. This is something for us to think about since from what we understand the infusions are given through an I.V. I am not sure how we would accomplish that with Craig. We would not want to start any until school is out just in case there were any adverse effects on his behaviour initially. Craig has been to 3 birthday parties in two weeks! Wow! I was afraid that he would not be included and now I am hoping there are no more parties for awhile since I feel I need to stay with him at the party to keep him on track and to keep his fingers out of the cake :-) The children are always so excited to see him and sometimes I think they overwhelm him with all their attention. But he has done quite well and often his behavior (though at times may be bizarre to others) is usually the best of the kids at the party. The children do not even seem to notice his stims or if they do it does not bother them.