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The Autistic Spectrum

It is imperative that parents document their concerns, issues and needs in writing when dealing with their School Districts. If there is no paper trail, then for all practical intents and purposes, it wasn't said. These letters must be copied (depending to whom the letter is directed) to:

*School District Superintendent
*Asst. School District Superintendent
*School Principal
*Regular Ed Teacher
*Special Ed Teacher
*L/D Teacher (where applicable)
*Resource Room Teacher (where applicable)
*Teacher of Record (where applicable)
*O/T and Speech Therapists
*School counselor (where applicable)
*Aide(s) (where applicable)
*Advocate
*Child's permanent file

Delivery methods can be by hand (with a receipt provided by you, signed by the person receiving the letter-keep a copy of this with your file) or via postal service, certified, return receipt requested. Your signed green receipt, once it is returned to you via mail, should be stapled to the applicable letter and filed.

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Written by a Mom on one of my support lists for her daughter
 

A MOTHER'S WISH LIST FOR A TEACHER
For Maura With Love

1.  Please don't assume that you know what it is like to parent my child.  The only person who can possibly relate to my hopes and my dreams, my burdens and my fears, and the difficulties I face, is GOD!

2.  Please respect me for knowing my child better than anyone else.  Please accept the ideas I share as tools to help improve a situation for my child, not words of criticism towards you.

3.  My child does not speak well.  We aren't able to enjoy the reciprocal conversation about her day at school that you are able to enjoy with your own children.  Please communicate with me and allow me to communicate with you, so that I may know about her day.  I would like to be able to help her with her difficulties and praise her for her efforts.

4.  Please don't tell me I can't FIX my child.  I was complimented by God that he selected me for this journey - parenting a special needs child.  God grants me the serenity to accept the things I cannot change...the most difficult of all being that my child has special needs.  I can't FIX that and make it go away and I don't need to be reminded of that fact.  But God also grants me the serenity to change the things I can.  My child is full of motivation, a love for learning, a willingness to improve herself, and pride in her accomplishments.  Please respect me for encouraging her to be all that she can be.  Please respect her for her very hard word and accomplishments.  No, I can't FIX her disability.  But I can provide her with all that she needs to make it easier to live with.  And by the way, God grants me the wisdom to know the difference.

5.  Allow me to believe in miracles.  After all, I do live with one.  Don't slam the doors on my hopes and my dreams.

6.  Please respect me for the time, the effort, and the challenge of educating myself in the different areas of the special needs of my child.  I have a need to learn all that I can about my child and how she sees the world.  I am willing to share this information with you, hoping it will make your job a bit easier.  My knowledge also enables me to help others, which gives me great joy!

7.  Please know that I am tired.  There are day when I need some positive reinforcement or a kind word.  Because I understand that NEED, I try to provide the same to you and all who are involved in helping my daughter be all that she can be.  When my "gas tank" is empty, it needs to be refilled!

8.  Please know that I respect and appreciate all that you do.  I know that your job is almost as demanding as mine.  When God selected me for this journey, he sent angels along to help me.  YOU ARE ONE OF THEM!  Thank You!

Written by:  Diane O'Rourke-Bankus  2003



Here are some sites that will be of use when you are writing letters to your child's school. Please click on any area on the text below and you will be taken to that site.

The art of writing letters.

Letter requesting Special Education Assessment with user entered specifics.

NICHCY (National Information Center for Children and Youth with Disabilities) - 10 Different Sample Letters

Special Education: A Guide for Parents and Advocates Writing to School District Administrators

Using Letters of Understanding

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Below are a few items that I gave to teachers, therapists and school personnel in the hopes that they would help them to better understand my son.

A letter given to school personnel .....


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Steven has been diagnosed with High Functioning Autism, also known by some as Asperger's Syndrome, which is a neurobiological disorder on the autistic spectrum. Children with HFA/AS may have difficulty using and understanding nonverbal behaviors and developing appropriate peer relationships, in part, because their interactions often lack spontaneous exchange. While they often have keen interests and skills in certain subjects, they also may have a great deal of difficulty with organization.

Some HFA/AS children have difficulty with sensory issues and very often strongly rely on routine. Steven is one of them.

You will learn that Steven has many strengths. However, listed below are some issues that may become apparent to you as you work with him. Many of the behaviors you will see are NOT under his control and they are not a result of malice or willfull misbehavior. At times he simply does not innately know how to appropriately respond. No doubt, you will learn other strategies which will be helpful and we would appreciate your sharing with us. Please call us at any time if you have questions about Steven or Asperger Syndrome.

General Behaviors :
This syndrome is characterized by a sort of "swiss cheese" type of development: that is, some things are learned age-appropriately, while other things may lag behind or be absent. Furthermore, children may have skills years ahead of normal development (for example, a child may understand complex mathematics principles, yet not be able to remember to bring their homework home).

It is important to remember that just because the child learns something in one situation this doesn't automatically mean that they remember or are able to generalize the learning to new situations.

Steven reacts well to positive and patient styles of teaching. Generally speaking an adult speaking in a calm voice will reap many benefits. When it reaches a point that things in the classroom are going well, it means that we've gotten it RIGHT. It doesn't mean that Steven is "cured", "never had a problem" or that "it's time to remove support". Increase demands gradually.

Steven needs help with problem-solving situations. Please be willing to take the time to help with this.

When dividing up assignments, please ASSIGN teams rather than have the other children "choose members", because this increases the chances that Steven will be left out or teased.

Note strengths often and visually. This will give Steven the courage to keep on plugging.

Perseverations :
Steven may repeat the same thing over and over again, and you may find this increases as stress increases. It is more helpful if you avoid being pulled into this by answering the same thing over and over or raising your voice or pointing out that the question is being repeated. Instead, try to redirect Steven's attention or find an alternative way so he can save face.

Allowing Steven to write down the question or thought and providing a response in writing may break the stress cycle.

Transitions :
Steven may have a great deal of difficulty with transitions. Please try to give as much advance notice as possible if there is going to be a change or distruption in the schedule. Giving one or two warnings before a change of activity or schedule may be helpful

Sensory Motor Skills/Auditory Processing :
Steven has difficulty understanding a string of directions or too many words at one time.  Breaking directions down into simple steps is quite helpful. Speaking slower and in smaller phrases can help.

Directions are more easily understood if they are repeated clearly, simply and in a variety of ways.

Steven may act in a very clumsy way; he may also react very strongly to certain tastes, textures, smells and sounds.

Stimuli :
He may get overstimulated by loud noises, lights, strong tastes or textures, because of the heightened sensitivity to these things.

With lots of other kids, chaos and noise, please try to help him find a quiet spot to which he can go for some "solace".

Unstructured times prove to be the most difficult for him. Please try to help provide some guidance and extra adults help during these more difficult times.

Allow him to "move about" as sitting still for long periods of time can be very difficult.

Visual Cues :
Hand signals may be helpful, especially to reinforce certain messages, such as "wait your turn", "stop talking" (out of turn), or "speak more slowly or softly".

Interruptions :
At times, it may take more than a few seconds for Steven to respond to questions. He needs to stop what he's thinking, put that somewhere, formulate an answer and then respond. Please wait patiently for the answer and encourage others to do the same. Otherwise, he will have to start over again.  When someone tries to help by finishing his sentences or interrupting, he often has to go back and start over to get the train of thought back.

Eye Contact :
At times, it looks as if Steven is not listening to you when he really is. Don't assume that because he is not looking at you that he is not hearing you. Unlike most of us, sometimes forcing eye contact BREAKS his concentration.  He may actually hear and understand you better if not forced to look directly at your eyes.  He has said that looking directly into someone's eyes for prolonged periods of time actually hurts him physically.

Social Skills and Friendships :
Herein lies one of the biggest challenges for HFA/AS children, and Steven is no different. They may want to make friends very badly, yet not have a clue as to how to go about it. 

Identifying 1 or 2 empathetic students who can serve as "buddies" will help him feel as though the world is a friendlier place.

Students with Asperger's Syndrome may be at greater risk for becoming "victims" of bullying behavior by other students. This is caused by a couple of factors:

1. There is a great likelihood that the response or "rise" that the "bully" gets from the Asperger child reinforces this kind of behavior.

2. Asperger kids want to be included and/or liked so badly that they are reluctant to "tell" on the bully, fearing rejection from the perpetrator or other students.

Routine:
This is very important to most HFA/AS children, but can be very difficult to attain on a regular basis in our world.  Please let Steven know of any anticipated changes as soon as you know them, especially with picture or word schedules. Let him know, if possible, when there will be a substitute teacher or a field trip occurring during regular school hours.

Language :
Although his vocabulary and use of language may seem high, HFA/AS children may not know the meaning of what they are saying even though the words sound correct.

Sarcasm and some forms of humor are not understood by Steven. Even explanations of what is meant may not clarify, because the perspectives of an HFA/AS child can be unique and, at times, immovable.

Organizational Skills :
Steven lacks the ability to remember a lot of information or how to retrieve that information for its use. It may be helpful to develop schedules (picture or written) for him.

Please post schedules and homework assignments on the board and make a copy for him. Please make sure that these assignments get put into his backpack because he can't always be counted on to get everything home without some help.

If necessary, allow him to copy the notes of other children or provide him with a copy. Steven has dysgraphia, as many AS children do, which means they are unable to listen to you talk, read the board and take notes at the same time.

A Final Word :
At times, some of Steven's behaviors may be aggravating and annoying to you and to members of his class. Please know that this is normal and expected. He is in a challenging situation that is more stressful than he will ever let on. You may find that nothing works all of the time (and some things don't even work most of the time). You will also be treated to a new and very unique view of the world that will entertain and fascinate you at times. Steven is a very kind, happy boy with an enthusiasm that will surprise and delight you. He's a joy to be around.

Please feel free to share with us whatever you would like. Communication is the key and by working together as a team we can provide the best education and environment possible for Steven.

Thank you very much.

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PARENT STATEMENT ~ TO BE ATTACHED TO IEP


There should be no implicit or explicit expectations of teaching our son Steven to be "normal" or to "fit in" with typical children. Just as a child who is blind would not be taught to pretend he can see to fit in with his peers, Steven should be taught to navigate school and social situations within the context of his autism. Yes, he should be taught what is considered acceptable and unacceptable behavior, but feelings and needs generated by his autism must be respected.

It should never be brought to his attention that he must learn how to behave normally. After all, normal is a subjective concept and there are many days we prefer to be in his world that in this so-called "normal" world.

Eye contact is difficult for most people with autism. Our child is no exception. While eye contact can be taught, it is not a natural behavior, and the person must expend considerable energy on maintaining eye contact. This takes away from their ability to absorb what the other person is saying. Imagine being told not to blink while talking to someone else. This is similar to what many people with autism experience when eye contact is expected. Steven should not be forced to make eye contact.

Steven will receive modified work, including tests. He would function best in a smaller, highly structured classroom. His teachers should have received training in educating a child with autism, and should have regular, ongoing support available to them.

It is important that Steven learn organizational skills. He needs to understand how to keep everything together, go over checklists of what he needs to take home, etc.

Because of his autism, Steven has trouble defending himself, and cannot "read" the intentions of children who could hurt him. There should be no children in his class who have a history of aggressive behavior toward other students. When he is in a larger group situation, those in charge should ensure his safety, such as a teacher or aide.

Steven's social skills need to be worked on all year in a controlled setting. Small group interactions, controlled by an adult with training in developing social and language skills, will help him to interact with his peers, and participate more fully in his classroom.

Regular communication is very important. This would most likely take the form of a notebook passed back and forth between the teachers and us. We will be responsible for keeping the teachers informed about what is happening in our child's life outside of school.

We want to be informed immediately if any expected (on IEP) services are stopped or suspended for any reason -- e.g., extended illness of therapist or therapist leaves and is not immediately replaced.

Services that are not received (due to 1/2 day of school, teacher out, etc.) will be made up immediately and we will be advised of the makeup date.

Steven will have less difficulty with transitions if he is prepared for them.

Stevens handwriting skills have improved dramatically. However, as some autistic children, he does suffer from dysgraphia. For more complex/longer homework assignments, he will be permitted to complete them on his home computer.

Letter To Teachers
 
 
Dear  ___________________,

We are the parents of [name of child]. Our child has been diagnosed with Asperger Syndrome, a neurological disorder that is related to autism. He also has the following comorbid conditions [list] and learning disabilities [list]. While AS affects many aspects of behavior, it shares with autism the core deficits in social understanding and language. Simply put, our child sees and experiences the world differently than people who do not have AS. He may seem to overreact at nothing or become very emotional for no reason. We have learned that in most instances, there is a reason for why our child responds the way that he does. And it is a reason that makes sense once you understand AS. We have also learned that there are things we can do to help him. The first and most important is accepting that many of his behaviors are not under his control.
If you have not heard of AS, it is because it is a fairly new diagnosis here in the United States, although it has been recognized elsewhere in the world since the 1940s. People with AS often have a unique and at times unusual mixture of abilities and deficits. They may appear to be more capable than they actually are. AS is a pervasive developmental disorder, and it can affect virtually every facet of a childs academic, social, and emotional life, sometimes in ways that may unfamiliar to you. There is no cure for AS, but research on the disorder and new interventions and therapies are moving ahead quickly. We will be happy to share with you whatever information that we find that may be helpful to you in helping [name of child] have a positive, productive experience in school. Please feel free to call us anytime at [phone number].
          Every child with AS is unique. No two have the same pattern of behaviors, skills, or deficits. A technique or approach that worked for one child may not necessarily work for the next. Or what worked last month may not work today. In the [number] years since our child was diagnosed, he has received the following therapies and interventions: [list]. We found [list the most effective ones] the most helpful. He is currently receiving [list other interventions]. (If relevant), He is taking [name of medication(s)] to address [list the behavior(s), symptoms, disorders, etc.].
Our childs main strengths are: [list strengths].
The praise he values most is: [list: being told that he is bright, wise, fun to be around].
            The most effective rewards would be: [list].
            The strongest disincentive would be: [list].
Like many people with AS, our child has special interests: [list special interests]. You may find it helpful to allow him to indulge his special interest by talking about it for a limited period of time as a reward.
AS affects numerous areas. Below is a list of the difficulties [name of child]  faces and what we and his other teachers and therapists have discovered works and does not work.
General Personality and Behavior
[name of child] is [list the positives: warm, loving, has a great sense of humor, et cetera].
The areas in which is he is most seriously challenged are: [list challenges]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful]. Some other approaches such as [list what does not work for your child] do not work for our child and tend to make him feel [describe adverse or undesirable behavior]. When that occurs, we find that it helps to [describe action].
Social Skills with Adults
[name of child] is [list the positives: warm, loving, has a great sense of humor, et cetera].
The areas in which is he is most seriously challenged are: [list challenges: has difficulties following multistep directions, a tendency to ask for help with things when he does not necessarily need it,]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful: breaking all oral directions down into short, simple steps; gently encouraging him to do those things you know he can do]. Some other approaches such as [list what does not work for your child: repeating complex instructions several times; forcing him to do things he feels inept at] do not work for our child and tend to make him feel [describe adverse or undesirable behavior: anxious, dumb]. When that occurs, we find that it helps to [describe action: calm and comfort him to regain control].
Social Skills with Peers
[name of child] is [list the positives: interested in other children and anxious to make friends].
The areas in which is he is most seriously challenged are: [list challenges: his inability to join in appropriately, participate in conversations, and understand how to reciprocate]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful: using Social Stories to cue and remind him of appropriate behavior; setting up situations where he can practice these new skills with other children]. Some other approaches such as [list what does not work for your child: simply leaving him in a group of children on the playground to find his way] do not work for our child and tend to make him feel [describe adverse or undesirable behavior: stressed, anxious, and sad]. When that occurs, we find that it helps to [describe action: gently remove him from the situation and set up another experience that is rigged for success].
Expressive and Receptive Language
[name of child] is [list the positives: has a large vocabulary, tells interesting make-believe stories].
The areas in which is he is most seriously challenged are: [list challenges]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful]. Some other approaches such as [list what does not work for your child] do not work for our child and tend to make him feel [describe adverse or undesirable behavior]. When that occurs, we find that it helps to [describe action].
Auditory Processing
[name of child] is [list the positives: can completely recall songs or poems he has heard only once or twice].
The areas in which is he is most seriously challenged are: [list challenges]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful]. Some other approaches such as [list what does not work for your child] do not work for our child and tend to make him feel [describe adverse or undesirable behavior]. When that occurs, we find that it helps to [describe action].
Sensory Issues
[name of child] is [list the positives].
The areas in which is he is most seriously challenged are: [list challenges]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful]. Some other approaches such as [list what does not work for your child] do not work for our child and tend to make him feel [describe adverse or undesirable behavior]. When that occurs, we find that it helps to [describe action].
Fine and Gross Motor Skills
[name of child] is [list the positives: almost at age-level with basic living skills; he can tie his shoes, zip his jacket].
The areas in which is he is most seriously challenged are: [list challenges]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful]. Some other approaches such as [list what does not work for your child] do not work for our child and tend to make him feel [describe adverse or undesirable behavior]. When that occurs, we find that it helps to [describe action].
Organizational Skills
[name of child] is [list the positives: able to pack his book bag at the end of the day if prompted; sometimes able to work at his desk without prompting].
The areas in which is he is most seriously challenged are: [list challenges]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful]. Some other approaches such as [list what does not work for your child] do not work for our child and tend to make him feel [describe adverse or undesirable behavior]. When that occurs, we find that it helps to [describe action].
Perseverations
[name of child] is [list the positives: engaging in perseverative behaviors less this year than he did last year, and is becoming aware that they are stigmatizing].
The areas in which is he is most seriously challenged are: [list challenges]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful]. Some other approaches such as [list what does not work for your child] do not work for our child and tend to make him feel [describe adverse or undesirable behavior]. When that occurs, we find that it helps to [describe action].
Transitions
[name of child] is [list the positives: managing to handle transitions, provided he is given clear, detailed explanations of what is expected].
The areas in which is he is most seriously challenged are: [list challenges]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful]. Some other approaches such as [list what does not work for your child] do not work for our child and tend to make him feel [describe adverse or undesirable behavior]. When that occurs, we find that it helps to [describe action].
Changes in Routine, Surprises
[name of child] is [list the positives: still uncomfortable with surprises but less likely to scream when they occur than he was a few months ago].
The areas in which is he is most seriously challenged are: [list challenges]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful]. Some other approaches such as [list what does not work for your child] do not work for our child and tend to make him feel [describe adverse or undesirable behavior]. When that occurs, we find that it helps to [describe action].
Eye Contact
[name of child] is [list the positives: making as much eye contact as he can comfortably right now].
The areas in which is he is most seriously challenged are: [list challenges]. We believe that these can be most effectively addressed by [list interventions and tactics that have proved successful]. Some other approaches such as [list what does not work for your child] do not work for our child and tend to make him feel [describe adverse or undesirable behavior]. When that occurs, we find that it helps to [describe action].
            [Any other information you feel is important.]
            Sincerely,
           [your name]


This letter is  from pages  369-374 of  THE OASIS GUIDE TO ASPERGER SYNDROME by Patricia Romanowski Bashe and Barbara L. Kirby  (Crown, 2001)
Copyright PRBookworks and Barbara L. Kirby
OASIS (online aspergersyndrome information and support)