One of the questions I am most frequently asked is, “Can you tell me about the IEP?” If you learn nothing more in my blogs – I hope you will remember this – the Individualized Education Plan (IEP) basically outlines the path your child will take while s/he is in school. This is a mandatory, legal document. The IEP team (school personnel along with you and people you request to attend) must meet at least one time per year. During this meeting your child’s goals for the next year are discussed and adopted.
So, how do you prepare for the IEP? First, I suggest you study (over and over) the Individuals with Disabilities Education Act, 2004. Next, you need to take action – after all, you are your child’s advocate. The first item on the list is this: do not wait for the date of the IEP team to meet. Go to your child’s school frequently. Meet with the teacher. Discuss the goals in the IEP and ask how well your child is progressing in each one. If your child is nearly half-way through the school year and the teacher has not started working on one of the goals, for example, this might be the time to request an IEP meeting.
Since the IEP is a formal, official meeting you must give the school time to send out the required forms and make certain the key people will be able to attend the meeting. Why do you want to call for this IEP meeting? There are several reasons. First, your teacher has not informed you that your child has not started one of the goals, this is important. Second, you will want to know why the teacher has not started and why you have not been informed. Third, you want to know what the teacher intends to do about this particular goal and the team must make a decision that satisfies all of you (do you want to support the goal and see that it is started; do you want to modify it; do you want to eliminate it).
During the initial visit, when you first learned the one goal had not been started, you will definitely want to review the other goals to see how well your child is meeting each performance goal. Check each goal, check the benchmark, and check the date to satisfy yourself that your child is on target to meet or exceed the goal during this IEP period.
In my book, The Autism Handbook, I offer some key information regarding the IEP, how to act, react, what I suggest you do if you are unhappy and options you have if you are not satisfied with the new IEP. The basic thing to remember is this: You are your child’s advocate.
I just completed an interview with a radio station in New York. Unfortunately, we ran out of time and I was not able to discuss the most recent development, regarding autism, and what the new change may or may not bring about. As if we do not already have enough confusion about autism, where the rate of occurrence has been set at 1 in 150 births (that is the figure I used in my soon-to-be-released book, The Autism Handbook), a new figure has just been released by the CDC. They announced that their findings are now that one in every one hundred births the child will be diagnosed with autism. One in one hundred – that is really a scary figure. In another finding they are claiming that 40 percent of children diagnosed with autism disorders no longer have autism. My question is this: were they cured? If so, how?
It seems to me that the CDC is making an announcement, which I find very premature, that will have a major impact on the autistic child, the family, schools, and so forth. Will there be additional money available to serve these new statistics or will the present budget be the only money available to meet all those diagnosed with autism and their needs? Will the schools have sufficient funding to hire new classroom teachers to meet the needs of these children? The questions go on and on – my concern, are there any answers?
The Autism Handbook was written with the intent of supplying parents with some fighting gear as well as offer them hope. Hope seems to dwindle with these new figures, particularly for pregnant women and parents with young children.
The bottom line to all of this – please do not buy into these new figures just yet. Maybe they are correct but maybe they are not. Why, you ask? Here is where I have a real concern: this information is based on a telephone survey involving more than 78,000 parents of children in the age group from 3 to 17. There were numerous other questions asked about health issues, having nothing to do with autism. This new survey, ladies and gentlemen, included two questions on autism.
The results of this survey were released early this week. I have not heard anything on the news reporting the changed figures. I have not read anything in the newspaper. I do not understand this because these new numbers will have an impact on America as a whole.
Did you ever wish you could see into the future and wonder how things will change in autism twenty-five years from now? I often have. As a teacher of children with severe autism, and now a consultant and author, I wonder if the new theory of stem cells will be on the front line. I wonder about diets and the change of eating habits. I wonder about education and the changes that will be made to teach our autistic children.
In my newly released book, The Autism Handbook, I discuss a number of possible causes of autism. I also emphasize, as of this day, that we do not know specifically what causes the disability. We only have suggested causes as well as a number of possible contributing factors. So, we can safely say, during the last twenty-five years we have been able to gives names to the various types and degrees. For example, we now use the word autism in a generally casual way. The same is true with asperger's. However, we are not so quick to point out that Rett Syndrome and Childhood Disintegrative Syndrome are also categories of autism. We have learned that Dr. Bruno Bettelheim's early theory that Refrigerator Mothers (mothers, he said, who reacted coldly to their autistic child causing the disability) is not the cause; that certain vaccinations have not been ruled out completely as a cause; and that the brain most likely plays a role as a cause of autism. Still, after all of these years, we do not know the specific cause(s).
It is disturbing to realize we can send a woman and a man to the moon, land a space shuttle, and have astronauts walk around in space, yet, in this same time period we have not reached any kind of clear conclusion about the cause of autism. We have learned to impregnate women, with frozen sperm, which is truly a miracle, but we are still looking to find answers to the puzzle of autism. We have learned how to transplant a human heart, to another human beings body, but we are not any closer to determining what causes autism.
When you think about autism, in this perspective, it makes one wonder - is it truly because it is so difficult for researchers to make such a determination as to the cause of autism? Or, is it that there is not sufficient funding allocated to do the research? Is it because autism is such a puzzling issue, or is it because there are not enough motivated, interested researchers attempting to piece the puzzle together?
The bigger question is this: Will we have what we need, to meet the needs of all autistic children, within the next few months, not in the next twenty-five years?
Imagine capturing a tiger, taking it to a zoo, releasing it, and locking it up in a cage? What would you expect? Well, I am certainly not comparing any autistic child to a tiger; however, some autistic children have this magical strength. This strength can certainly be noticed in the dentists' office if everyone involved is not prepared for the visit just like the strength of the tiger when unexpectedly being placed in a strange environment.
No autistic child will want to go to the dentist - but, you and I do not look forward to seeing the dentist every six months. We brush, we floss, we use Listerine but we still have a cavity. We see that big, nasty needle approaching our mouth. We cringe preparing for the tip meeting our lip, gum, or whatever. Ayyy, boy does it hurt. Then we see the pics, the drill, and all of those other dental pieces of equipment.
Now, imagine your autistic child peacefully walking into the inner-office, into a smaller office, and, without hesitation, going to the dentist chair, reclining, and relaxing as if preparing for a nap. NOT!!! I wish it could be this easy.
Before you initially make a dental appointment you need to do your homework. If you live in Los Angeles, CA or New York City, NY you should not have a problem locating a dentist. If you live in Hughson, CA or Dwight, NE you may find that the few dentists practicing in your town are not knowledgeable about this disability we call autism. No matter where you live I suggest you contact your representative from the Regional Center to have a dentist recommended. Or, contact the autism groups available to you. Another possibility is to talk with other families raising an autistic child as well as group homes. If you hear the same name of a dentist mentioned repeatedly, run, make an appointment, as this one is probably a diamond.
If you live in a small town, it can be much more difficult. The closest dentist working with an autistic child may be 500 or more miles away. Now, you have a choice: drive the five hundred miles or visit a local dentist who is willing to learn and work with you. This dentist must have an abundance of patience, some knowledge about autism, and the loving concern of your grandpa or grandma. Then, the next project is to find out if your autistic child can receive some type of sedative. I worked with some older children and their dentist actually put them to sleep. This allowed the dentist to usually do an examination, fillings, when necessary, and cleaning all during one visit. This is not to condone a sedative of any type; it is being offered as an alternative if you live in a small, rural area. If you decide to go the route of the sedative it is imperative to first discuss the type and quantity with your primary care physician so that your child will not suffer any side issues.
There are many kind, caring dentists out there. Some of them specialize in children's dentistry; others in orthodontics, and so forth. Perhaps, in the future, there will be dentists who specialize only in children with autism, but, until that day comes you need to do your homework before choosing one to work with your child.
Until next time...
My new site is live and I am thrilled to announce my new title The Autism Handbook.
The Autism Handbook is an introduction and guide for parents and educators dealing with the autism spectrum. It is filled with case studies as well as explanations about various topics such as signs and treatments of autism. I am excited to share my 25 years of experience and knowledge with everyone who wants to know more about Autism and the Autism spectrum.
In addition to my new release, I am giving presentations to groups and individuals nationwide. Please check my events page regularly to see when I am coming to your area. If you or your organization would like me to come to your area, please feel free to contact me right away!
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