The following is about what worked for a pre-kindergarten child. He was non-verbal, a year older than his peers, and very small for his age. He is now in third grade. The three biggest factors in his successes were structure, preparation, and a shadow. Structure means a "normal" routine that he could expect from day to day, and week to week. For example, math was always after the Morning Prayer and pledge of allegiance. Additionally, there are few distractions. All the children worked on the same thing at the same time. Preparation means that he did school work (ABA sessions) before coming to school each day. This was to help the child not be so overwhelmed. Most importantly, the child worked with a "shadow" who was a member of the ABA team. The shadow facilitates integration in the classroom and with classmates.

I read an article in a local "special kids" newsletter. I liked what one of the mothers of special kids said. In essence, she said that she relies upon family, friends, and others for help. She stated that just because she needed a break now and then did not mean that she was a bad person. She also has opened her home to students in training, to help them learn abt what the families of special kids go through. What I liked best about what she said was that she looks at the silver lining instead of the clouds. I thought that was a wonderful concept!

Also, apparently there is new radio show on Autism w Dr Shih of NAAR as the speaker. I am always interested in reviewing the latest research. The link is www.autismlink.com/radio. Additionally, there is a TV series "Spotlighting Autism" (link is www.nyfac.org).

I try to be aware of the need to clean up my side of the street. I apologize to my son and his wife for anything that I said that might have been interpreted as being critical of them. I was trying to share my thoughts, feelings, concerns, not be critical of them. As I have repeatedly said, they have a lot to deal with and seem to being doing the best they can in handling a difficult situation.

Can you believe this??? I am horrified!

PITTSBURGH POST-GAZETTESOUTH NEIGHBORHOODSTee-ball coach charged in assault. Arranged attack to sideline autistic player, police say Saturday, July 16, 2005 By Moustafa Ayad, Pittsburgh Post-GazetteA Fayette. County tee-ball coach was arraigned on felony charges yesterday that he bribed a 7-year-old player to throw a baseball at a mentally disabled teammate's face to keep the boy out of a game. State police said Mark Downs Jr., 27, of Dunbar, offered his star player $25 on June 27 to hit an 8-year-old autistic child with a baseball because he wanted to win the game."Just when you thought you had seen everything," said state Trooper ThomasB. Broadwater. Downs' lawyer, Thomas Shaffer, said his client denies the charges."He has two children of his own," said Shaffer. "He could never do this."Police said Downs asked player Keith Reese to hurt Harry Bowers, who is autistic. Reese threw a ball that hit Bowers in the left ear while they were warming up before a game. After Bowers didn't go down, Reese hit the childin the groin with the ball, police said. When Bowers ran to tell the coach about the attack, Downs suggested that he sit out the game, police said. When Jennifer Bowers, the boy's mother, confronted Reese about the deliberate throws, Reese told her the coach had asked him to hurt Bowers, police said. The boy was taken to an emergency room, where he was treated for swollen red marks on his ear and groin. Bowers could not be reached for comment. State police said she signed up her son for tee ball hoping it would help him overcome some of the social stigma he might face in the future. Downs was charged with criminal solicitation to commit aggravated assault, corruption of minors, conspiracy to commit simple assault and recklessly endangering another person. Downs and Bowers' mother have clashed in the past about her son's playingtime, police said. The R.W. Clark Youth Baseball League requires that each player get at least three innings in the games. The league investigated the incident after a complaint was made but concluded that it could not prove Downs had done anything wrong. A woman who answered the phone at Downs' home yesterday said that he wouldnot talk to the media and denied the charges. Broadwater said after conducting several interviews with the boy who threw the ball and his father, he determined that there was enough evidence to charge Downs. Downs has a preliminary hearing July 28.

These are some new (scary) statistics from The Autism Autoimmunity Project (TAAP). I have reported the states with the highest percent of increase.

Number of cases (for ages 3-5) reported in:
2003-2004; 2004-2005; and the percent increase:
North Dakota: 20 32 60%.

Montana: 23 32 47.6%

New Hampshire: 82 120 46.3%

Arizona: 157 223 42%

According to this study, possible causes for the increase in autism are: autoimmunity issues, the MMR vaccine, other vaccinations, and environmental factors. The state with the highest number of reported cases in 2004-2005 is California with 22,691 cases.

I ran across some information from the National Center on Birth Defects and Developmental Disabilities, entitled "Developmental Milestones: Toddlers (2-3 years)". This is the article:

Because of your child's growing desire to assert her independence, this stage is often called the Terrible Twos. However, this can be an exciting time for you and your toddler. He will experience huge intellectual, social, and emotional changes that will help him to explore his new world, and make sense of it. During this stage, your toddler will be able to follow two- or three-phrase commands, sort objects by shape and color, imitate the actions of adults and playmates, and express a wide range of emotions.

Positive Parenting:
Set up a special time to read books with your toddler.
Encourage your child to engage in pretend play.
Play parade or follow the leader with your toddler.
Help your child to explore her surroundings by taking her on a walk or wagon ride.
Encourage your child to tell you his name and age.
Teach your child simple songs like Itsy Bitsy Spider, or other cultural childhood rhymes.

Child Safety First:
Encourage your toddler to sit when eating and to chew her food thoroughly.
Check toys often for loose or broken parts.
Encourage your toddler not to put pencils or crayons in his mouth when coloring or drawing.
Never leave your toddler near or around water (that is, bathtubs, pools, ponds, lakes, whirlpools, or the ocean) without someone watching her.
Never drink hot objects while your child is sitting on your lap. Sudden movements can cause a spill."

I have found that my Tori loves to:
Sit on my lap or next to me as we read books;
Have a tea party. We set up her little table and chairs, and her little tea set. She will pour water into her little tea cups and both she and I will pretend we are having a tea party;
Go for a walk around the neighborhood looking at and naming the flowers, grass, rocks, butterflies, birds, etc that we see:
Sing with me. She especially loves the songs from her favorite movies.

Tori is doing so well. It has not been good for her to be out of school, or to not be attending a specialized course such as SARRC offers. However, she will start school again in two weeks. Her mother has told me how fast Tori learns, and I am in hopes that this school year will be the BIG turning point in her life. I firmly believe that given the proper attention and training, that Tori can attend a regular classroom in the next few years.

I received some wonderful emails today. Thank you for all your support and kind words. One lady said "People do not want to deal with the situation because they are fearful". Another lady said that her mother thought the autistic child was bad. Another lady said she would pray for the family. Yet another said that her mother had no time for her autistic child. How sad!!! These are the best years in her mother's life...to be with her grandchild, and she is throwing that away.

I joined an online Autism support group today, and have already received emails of support. People can be so caring and wonderful. I am grateful that I know how to ask for help, and that I know it does not show a weakness to need help, rather is shows a strength of character to ask for it.

I have been humbled a number of times in my life. The work that I do, working with adults and youth in a prison setting, is also humbling. I have learned to count my blessings. Not a day goes by that I don't know, that "there for the grace of God go I". I have also learned that when things appear the worse, they are really about to get a whole lot better. Better than I ever imagined it could be.

My Tori is about to have her life expand. She starts school in two weeks, and there she can be taught and cared for. However, she will never be loved as much as her Gma loves her. I am SO grateful for the people in her life who have patience, and can think outside of the box. I know, by my years of working with "special" people, that what they truly need is to be accepted and worked with on their level. I'm grateful that God has given me the gift to do this. I am an "out of the box" person myself, so relate very easily to others who are not the usual type. As a matter of fact, I find it difficult to relate to people who are not a little bit different.

I am told that I may not see my Tori tomorrow, and have been "raged" at for my blog. This is just another day for me. I am unusual and am used to people judging me. I am not autistic, but like autistic people, I demand to have a voice and to be accepted for who I am. It is just too difficult trying to contort myself to fit other people's expectations. I am comfortable being me, and can only pray for the people who judge. I am at peace, they are not.

I was asked the question abt what has changed in Tori's life. I had stated that I was proud of her parents, but now I say that I wish they could get counseling. This is not a slight to the parents, but more of a realization that they need support in dealing emotionally with what is happening in their lives. I am also aware that having an autistic child has it's emotional ups and downs.
Counseling can include anything...planning meals, arranging the house, etc. It only means getting other opinions, more information.

I have been increasingly concerned abt what effect it has on Tori, to be taken away from her home every day, for 8 + hours. There was a comment that she was with her habilitator all day, and became very upset that a child was on the swing she had been on. Apparently, she was upset for abt 90 minutes. This is not unusual behavior for an autistic child. But, I am wondering what else is going on in Tori's life. That's all. What is going on in those 8 hours?

I have had too many years of professional training and experience, 35 years to be exact, to not question EVERYTHING that goes on in a child's life. Tori is an unusual child, getting services that the ordinary child does not get. Autism is still a new field and a whole bunch of the questions are still not answered. The national experts still don't understand this disorder. There are millions of dollars going into Autism research, with the hope that we can understand it better. I can't completely understand it, and I am much more of an expert than most educated people are.

I am proud of her parents for sticking through this. I also wonder if some sort of additional help for the parents might be beneficial. They are not experts in autism. I have wondered if having someone come in from SARRC to talk to them in a general way, about autism, about things they could do to help make bed time easier, etc might be beneficial. So, nothing has changed in Tori's life, unfortuately.

About five months ago, I asked the family if I could take Tori to the month long SARRC training. I told them that there is a waiting list, and to just get her name on that list now. They could always remove their name from the list. I said that I would pay for this training and take time off from work to do this. This would only be 2 days a week, 2 hours a day. I was told that the mother wanted to attend that training. I said, "OK", I will come over and babysit the twins, and the mother can take Tori to the training. I was told that the mother was looking at a number of resources. Time was of the essence, and by the time the mother called, the list was full. So, Tori missed that opportunity.

Sometimes adults are so wrapped up in themselves, and so defensive, they can not see the forest for the trees. They can not understand that we are all on the same team, on Tori's Team. But that is their problem.

I think/worry abt Tori all the time. I wish that she did not have to leave her home every day, and be gone for 8+ hours. It's too bad that she can not be taken care of in her own home. I have wondered several times if she does not feel like the "bad" child... the outcast. And, then I wonder what this is doing to the twins. How do they feel abt their sister being removed from them every day? I wish some "expert" could come into the home and help "fix" whatever the problem is. The problem can not ALL be Tori. And I wish that her family could get into some sort of counseling, to help them deal emotionally with what is happening. I feel SO powerless!

Attended the twins BDay party. Not nearly as crazy as I thought it would be. Tori did get upset, over and over again, it seemed...tantrums. She was able to be calmed and redirected, but got upset easily. I keep thinking that we are not seeing the whole picture, but can't figure it out! I will have her all day next Saturday, so maybe things will be a little bit clearer then! The twins were SO cute, and get cuter every day. They are such a joy!

7/9/05 I will not be seeing Tori today. It upsets me to not be with her at least once a week. I think about her every day, happy memories and worries. It is just not right that a little girl should be so unhappy, and have such problems. I also can't wait for her to start school again. Three more weeks. I am glad that she has a habilitator, can leave the house and have other places to go and people to be with. But, I just wish things were right with her in her own home. I rarely see her problems. She is too busy at my house. And then, she is home by 4PM, so I do not see the meltdown time, and I do not see the problems she and her family are having. I can imagine it though. A child that is too tired, too something. I left a message on my son's work phone, suggesting that she put on her heavy coat and dark glasses, as that might help. I always put my little unhappy child in a bath of bubbles. He kicked and kicked, and splashed water everywhere, but he was usually able to get it out of his system. Also, his father would lie down next to him and rub his back, and that helped, too. I definitely know that he would not do what I wanted him to do. I had to change my life, my thoughts and behaviors, to work with his. I had to be VERY flexible, yet very structured. It worked in the end, but what a life that was. I will always remember this very religious woman, who had six kids in a row. She said to me that if he were her first child, she never would have had any other children. I didn't realize how different he was from other children, but obviously, others did. I believed in thinking positive thoughts... the best, back then, and I believe it even more so now. So, with Tori, I believe that she is very bright and gifted, therefore would need special care and direction.

Yesterday, was the 4th of July, and we got together as a family. Lots of people, lots of noise. I think the "babies" did very well. My sister bought new toys for them. I brought books, puzzles, crayons, flash cards for them. I also brought their little table and chairs, and their "food" (chicken and rice). They ate potato chips and carrots, too. Tori was not able to sit as long as the twins to eat. She would get up to do something, then come back to eat, and asked two more times for rice. So, that was not bad for an autistic child. She was very interested in exploring the house, and found scissors and highlighter markers in the study. This was good time to get all the crayons out and color on white copy paper. The twins were also interested in this activity. Tori loves cutting with scissors. I hold the paper and supervise the cutting. My mother, sisters and I remarked on how well the children did. Tori has made a BIG "jump" in her development. Less than a year ago, she attended a Thanksgiving dinner with a few more people. She was very upset, screamed, wanted to be held, and had trouble settling down. That was when I first saw definite signs of Autism. This time, there was none of that upset screaming. She does use her voice a lot, but this behavior appears similar to what I have observed in other children. All in all, it was a good day!

7/3/05

Richard's Blog was such a good idea, I decided to start my own re: our Tori. I have her abt once a week and have been able to watch her progress.

In the late winter of this year, before she started school, she was not very verbal. I could see that she had an almost empty look on her face some of the times. She acted as if she did not understand what I was saying to her. She was often aloft, and disconnected from me. I decided that if I could get her to contact with nature, that she might come out of her "autism" somewhat. I took her for walks, and said the names of common things, like "Bird", Flower", "Flag", "Grass", "Leaf", etc. I encouraged her to say the words after me, which eventually she did. I praised her for her efforts. She started smiling and being excited. She loved being outside and we spent many hours walking through the neighborhood. She especially looked forward to seeing my dog, "Sonny". She started saying (on the drive to my house), "Sonny", and then panting like he does. She has come a long way!

Eventually, Tori started saying the words "flower", "birdie", etc without my prompting her. She became more verbal. Then, Tori started school, and I could tell that her whole life had changed. She seemed SO much happier! Unfortunately, school was soon over for the summer. I feared that Tori would regress without this stimulation, and was hopeful that she could get into the SARRC classes, or some other good school. This did not happen, and Tori was stuck again where she could not explore her world, as she needed to. I think Tori is very bright, and have wondered if part of her problem is that she is depressed, in addition to some genetic, neurological problem. Obviously, there is a LOT of hope for Tori, as she did so well when she was attending school.

Last Saturday, I took Tori to my youngest sister's house and she swam with her second cousin. She loved it, splashed in the water, put her feet in the waterfalls, etc. There was no sign at all of Autism. One of my family members (my sister, who is the middle girl) has a Doctorate in Early Childhood, Special Education. (What a gift it is to have her in the family!) Anyhow, this sister stopped by and was able to observe Tori's behavior. She also saw no signs of Autism. So, it does appear that Tori has made remarkable progress. She had a great day! I fed her the food I had prepared for her at my home, rice and chicken. She ate, and played, and asked for more food. I fed her when she asked for it. She expends a lot of energy, and needs to eat often...if she can stop her playing long enough to eat. She was very comfortable at my sister's home and loved playing with her cousin.

Yesterday, I brought Tori to my home. She and I went grocery shopping first, and then came home. I had already cooked her rice, and then fixed the chicken. I had her little table set, with her little dishes, and her food was there for her to eat as she wanted. She would eat, then later would ask for more. She has become very verbal. We colored with markers, crayons, and pens. We played with a sticker book. We got out the finger paints. She loves all these mediums. We played with puzzles. I filled her pool with water and turned on the outdoor mister. I turned on the hose for her and she watered the pool, the chairs, the plants, the dog, the patio, and Gma. We went inside and she watched "Baby Einstein" and "Snow Dogs". I allow her to choose what she will watch. She used her potty chair twice and did very well. She has her own sunglasses which she loves to wear (actually, they belong to her little cousin). She is just adorable, and I see no signs of Autism during these times.

However, I do believe her parents when they talk about her 6PM meltdown, and her behavior problems. I know of another child about 30 years ago who had similar behaviors...and he was a BIG handful. So, I know how exasperated it can feel to be the parent of a child like this.

I am very proud of Tori's parents, and of Tori. A lot of progress has been made.

I will continue to blog after I have her for the day. Perhaps, I can get a clearer picture for myself.