This is a page created to help all those families out
there who are living with or who are involved
in some way with individuals with Autism.
I am Nancy, Craig's mom.
Also mother to Stephanie who is 8 years old and NT
(Nuerologically Typical - the politically correct way to say that she is 'not autistic.)
And mother to Bennett who is just 9 months old.
And wife to Joe.

Craig is now 5 (almost 6) years old and was diagnosed with autism at the age of 3.  This will be the story of how we learned of his autism, the devastation, the sorrow, the fears, and then the acceptance and realization of what autism really is and what it has come to mean for our family. Don't worry, this is not a sad story, not for us as it turns out. There have been and we are confident there will be in the future- many reasons for celebration and joy in the life of our son who is so often marching to the beat of his own drummer. I would like to share with the many out there who do not know what autism really is, to do away with the misconceptions and to dispell some of the myths and fears that often come to mind when people hear the word "autism." Sadly enough, I have come to find that a large majority of the books in our local library portray only the form of autism that is totally disabling and hopeless. I have also noticed that television also like to portray those "textbook" cases of severe and profound autism and an autism in a time where there were none or very little programs and treatments to help individuals with autism.  So, here I will be spilling my thoughts and feeling on these pages becauase I am hoping to reach others who need that contact with someone who has been there and done that, someone who is there and doing that, someone who understands and wants to help.  I remember well those early days when I felt so alone in the new world of autism. But that is all to come in these pages where I will share our experiences and keep you up-to-date on Craig's progress. So here we go..... get ready to read, to laugh a little, cry a little and send up a little cheer in those times of triumph.

I am going to start with a poem that I wrote in our first year of the journey.
 

 
AUTISM IS A JOURNEY
Autism is a journey traveled by those so afflicted
and those wo are chosen to share their lives.
It is ia journey full of twists and turns, ups and downs
  It is a journey often misunderstood by onlookers
 who miss out on the great adventure.
 It is a journey with obstacles to overcome.
It is a journey with many rewards to accompany the frustrations.
It is a journey on which we celebrate each and every accomplishment....
 each word spoken, each word understood.
 Autism is a journey which I have not chosen to take,
 to a place I cannot see. But is is a journey traveled
 with a very special person who has taught me about
patience, understanding and not taking anything in life for granted.
Autism is a journey...
It is a journey of hope.
It is a journey of love....
 
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To get started on this, I am going to enter some exerpts from letters that I write to a dear friend. I am copying here the parts that pertain to Craig and his progress. If you have any questions about things in the past or any areas that you or someone you know may be having difficulties with, please feel free to email me at: [email protected]
August 14, 1998 We went to adventureland amusement park last week, and that really went pretty well. Craig rode a few rides but mostly just enjoyed the busy atmosphere. Again we went no stroller, which is a first in situation like that, and it went fine. The only problem we had was when my sister had a brilliant idea that instead of eating at the park (she didn't want to pay the inflated prices) we go accross the street to a Mc Donalds which has a large play area. Nice idea..... Well, it turned out they had two buses full of boy scouts which made it take over half an hour to get our food. And they had a lady supervising the play area who would not let Craig play in there without socks. Well... we have this shoe/sock problem with him, he thinks if he has his shoes off he can't wear socks. It is like it is killing him!! So I told him, no socks, no play... of course there was a brief period of screaming. It was very brief (but enough to alert all other parents in the play area and to make the supervisor feel awful.. I don't blame her, it was just her job. He then resigned himself to just walking around on the outside of the play area and watching the t.v. that was in there and once the fries came he was fine. But... before the food came he walked up to a table where two people were sitting and took a drink of their pop!!!!! I was so embarrassed I didn't know what to do, he has never done anything like that before. I don't even think he thought about it, he was just thirsty so he took a drink, it was sitting on the very edge of their table. I know I should have offered to buy them another, but I was so shocked and embarrassed that I couldn't think what to do at the time. They didn't act mad, but they didn't smile either. Sigh.... I was so ready to leave that place!! The rest of the day went okay though.
Sept. 28, 1998 CRAIG!! He has been pushing the limits this past week!! He has: taken down all the ceiling tiles above Steph's bed, gotten INSIDE the washing machine (full of water) and threw all the wet clothing all over the floor, AND he emptied an entire bottle of windex in Steph's room :-( UGHHHHH!!! It is hard to get really mad about it because I honestly don't feel like he is doing it to be naughty. He is just a bit toooo curious lately. OH! And yesterday he was playing outside at my parents while Joe an my dad were putting a roof on their shed, well..... we thought he was playing with Steph, but he had decided to go for a walk clear down the road to the bridge... We were all frantic looking for him and there he was happy go lucky... the bridge is about the equivalent to 3 city blocks from their house. He really is a sweetie though, it is hard to stay mad at him for tooo long. I am not sure where all this new found curiousity is coming from, but I hope it goes away!! He has been good for the past couple of days, but I am afraid to let my gaurd down. Things at school are going well though. Carol (drew's mom) gave me a copy of a daily report sheet that their associate fills out every day for Drew. It lists all the different parts of the day (i.e. free play, work basket, group time, etc.) and next to each area she puts a smile, frown or a soso face. She also puts little notes about things he really liked, did well at or things he is having a tough time with. He seems to really enjoy having the kids chase him at recess (and at that age it seems to be somewhat appropriate) special gym time in the mornings and computer time of course. He whizzes through most of the work baskets and that is not a problem, he seems to be catching on to all the "learning" stuff fine. But he is having difficulty in holding his pencil correctly, though he seems to be doing fine with cutting. I think part of the pencil/writing thing is lack of desire and part of it is just uncomfortable for him. He does pretty well writing him name if I draw a line for him to write it on, if I don't he writes it all over the page. I think his associate has a pretty good handle on things now and is understanding how to get him to cooperate, though he did have a time out last week because he didn't want to make a tree in art. I think the time out has been a good answer for them in getting him to cooperate. Craig's speech cotinues to progress slow but sure. He adds more and more words and phrases, but not much conversation. I am making him a penquin costume for Halloween, and he is pretty excited about that. I am making Steph a mouse costume (well, I am going to) she wanted them to be Tom and Jerry, but I wasn't sure how to make the Tom costume and I had already spent $20.00+ on penguin material. Craig loves penquins, so when I saw the pattern I had to go for it! :-)
October 8, 1998 Craig seems to be coming right along with school. I really enjoy the daily reports that the associate fills out. She usually tells me what he does at recess which I am always dying to know. Yesterday he took a little girl by the hand and led her around the playground :-) Usually he loves having the kids chase him. It seems the other children really LOVE Craig. I think the teachers have done a great job at including the students in his learning and coping. When we are waiting after school for Steph to get out some of the little boys and girls from his class walk by us to the bus line. They are always excited to see Craig and make it a point to say hi to him or hug him. One always says "Craig, my buddy!" One little girl was thrilled because he said "hi Jordy" to her. It is really sweet, I know it won't always be this easy with the other children, but it is a nice start anyway. Craig really loves the play kitchen area at school and I guess he does very well playing with the other children there. The department directors and guidance counsler are now in the process of starting the "Circle of Friends" program which I am absolutely thrilled about! That is such a neat program and is such and important step in getting these kids included in social areas. Of all the things he is learning this year I am the most excited about the social things, they are hard to teach at home and seem something he has to experiance.
October 27, 1998
Craig is doing pretty well at school. The special ed teacher spent all day yesterday with Craig and his associate following them through the day and structuring things up more so that he can participate more fully in class. They are really trying and I have seen lot's of progress. He seems to really enjoy most of the aspects of his day. Still his hardest area is the fine motor stuff. Will that ever come? I try to work with him on it but he is very resistant. I found out this week that He loves for the associate and the teacher to read to him! He still does not like for me to read to him much! I couldn't believe it. So I have been pushing harder with the reading and he has been a bit more accepting. His language skill get better all the time too. It is fun to hear all the new stuff he comes up with.
 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.
To read more about Craig in 1999 please click here: 1