I have interviewed several autistic adults about what they wish their parents, and teachers knew about when they were children, and the result is this document and their direct quotes. I believe that the true experts on Autism Spectrum Disorder are the ones that live with it, yet most people that live, and work with autistic children never think to ask adult autistics their opinion, so I did. I hope this helps spread awareness.

Please share this with whoever you think it might benefit.

"Things You Wish Adults Knew When You Were A Child" (pdf)

Shawna
Wichita, Kansas, 2009

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Excerpts from Talk to Me, Baby! Supporting Language Development in the First 3 Years
BETTY BARDIGE , A.L. Mailman Family Foundation, White Plains, NY
M. KORI BARDIGE, Abilities Network, Towson, MD

Talking with a baby who is too young to understand language may seem counterintuitive, but it also comes naturally. Babies reach out to adults and respond to language. Adults the world over tend to talk to babies face-to-face, in a high-pitched, singsong, repetitive manner, with elongated vowels, engaging intonation, and emphasis on key words. Often referred to as “parentese,” this way of speaking gets babies’ attention and helps them tune in to language. Their responses delight caregivers and keep them talking. Similarly, when babies show fatigue or distress, adults are likely to respond with rhythmic murmuring sounds that have a calming effect. The things that mothers, fathers, and other caregivers tend to do naturally support language development, but this support can be enhanced by intentional use of particular strategies:

• Read the baby’s cues, and adjust the intensity and modality of interaction accordingly. Interaction is exciting for young babies (and essential for brain development), but too much can suddenly become stressful. Some babies are hypersensitive to sounds, touch, or position changes; some respond to
either talking or eye contact but are overwhelmed by both at once. Babies give moment-to-moment signals of their readiness to engage or their need for a break.

• Use your voice to soothe or arouse a young infant and to provide security. Sing lullabies and silly songs in your home language. Help babies learn to associate particular songs and rhymes with playing, calming down, and going to sleep.

• Engage in frequent back-and-forth baby talk conversations. As the baby grows, introduce silly sounds that evoke a smile or laugh, knee-bouncing rhymes with a drop or lift that she can learn to anticipate, and a variety of peek-a-boo games.

• Use your voice to encourage a mobile infant’s exploration and to provide a secure base. Celebrate the baby’s efforts and accomplishments with words of encouragement and congratulation. Tell him when a change is about to occur. As his play takes him further from your side, use words to let him know that you are still with him.

• Let a baby listen to lots of different sounds: music, rustling leaves, a vacuum or washing machine (some babies find this especially soothing), bells, squeakers, and rattles. Talk about the sounds and the things that make them. Imitate a sound and watch the baby’s reaction.

• Play babble games. Imitate a baby’s babbling and enjoy her reaction. Catch a baby’s attention, babble one consonant sound, and see if she will imitate you. Answer a baby’s babbles by repeating them and then adding a new sound.

• Use a baby’s sounds to get him “on your wavelength.” As you talk to him (or even to someone else while looking at him), punctuate your conversation with his favorite sounds.

Talk a lot. Babies need to hear real language as well as baby talk. Talk about what you are doing, what the baby is doing, what happened yesterday, and what you want to remember to do today. Make language a part of all baby care activities

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Parenting can be tough. So can being a kid.

Incredible Years parenting classes are offered through Rainbows United. Classes teach parents new and different ways to help their child feel good about themselves, make and keep friends, do better in school and get into less trouble.

Sessions are open to parents of children ages 2 to 8 years old. Child care is provided as well as a free family meal.

Call (316) 267-KIDS to learn more or to sign up.

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Excerpts from Talk to Me, Baby! Supporting Language Development in the First 3 Years
BETTY BARDIGE , A.L. Mailman Family Foundation, White Plains, NY
M. KORI BARDIGE, Abilities Network, Towson, MD

A child’s first word is an exciting milestone. It often has the power of a whole sentence and can take on a variety of meanings depending on intonation and context. Once children discover the power of words, they become eager for more. A word meaning “What’s that?” is likely to be a frequently used part of a child’s early repertoire. Rich language input and responsive, playful relationships during the preverbal and one-word stages build a reservoir of linguistic and conceptual knowledge that fuels the toddler’s language explosion. The more that parents and caregivers talk, engage, label, and support during this period, the faster a child’s vocabulary is likely to grow as he comes to rely on language. The following strategies help build toddler vocabulary:

• Use the “follow the CAR” strategy. Follow the child’s lead. Focus on what she is looking at, asking for, playing with, or trying to do. Offer a Comment, Ask a question, or Respond by turning her verbal or nonverbal communication into a full sentence or adding a bit more information (California Institute on Human Services, Sonoma State University, 2003).

• As you interact with a toddler, respond empathically to his emotional tenor. If he’s excited by a game, play your part with exaggerated excitement. If he’s upset, fussy, or quietly reflective, a gentle, soothing voice is more likely to engage his attention.

• Accompany your words with gestures a child can copy. Give a child words for her gestures.

• Use specific, “grown-up” words in contexts that make their meaning clear.

• Respond to anything that sounds like a word and is used with communicative intent. When a child who hears a plane overhead points to the sky and says “ane,” you might answer by saying, “I see the PLANE. The plane is high up in the sky.” Give a child time to repeat a new word.

• Respond to the toddler’s efforts to keep the conversation going. Whether she uses babble-talk, grunts, gestures, signs, or words, give her words for what she seems to be trying to say. Pause to see whether she will try to repeat a word, but don’t force the issue.

• Take breaks and breathers. Give toddlers time to take in information and frame a response.

• Use language to help toddlers interpret their world and to prepare them for transitions. When you see a puzzled or fearful expression, find a simple way to explain what is going on or what may happen. When you pull the bathtub plug, explain that the water is going down through the pipe, all the way under the ground.

• Talk about a recent event that was special for the toddler. Use props or pictures to help her remember. Help her retell the story by asking questions, expanding her contributions, and filling in the blanks.

• Sing favorite songs frequently and encourage toddlers to join in. Listen for the point when gibberish turns into words. Pause before a key word to let a toddler fill it in by himself.

• Provide children with lots of chances to practice words they know. Read a toddler’s favorite book over and over, labeling pictures together. Find similar items in a magazine or catalog.

• Teach words that help toddlers stay safe, manage strong emotions, and control their behavior.

• Keep TV and videos to a minimum. No matter how cleverly a TV show or video engages the child, it can’t respond to her communications and expand her language. Toddler TV exposure is associated with attention problems at age 7, and more viewing time increases th

Does your child smile brighter since being in the care of a Rainbows' professional? Does your child receive specialized care at Rainbows that you wish others could benefit from also? Do you have a Rainbows story to tell about a care giver who went to the extra mile for our child? Please let us know about your success story.

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Cook together…Talk together…Eat Together…Make meals a family time! 
A great way to get your kids to try a new food or a new recipe is to have them help you prepare the food and clean up afterwards. IT may be messy and there will be a few spills, but even younger children can learn to do simple cooking tasks, when you show them how. The food activity should be something that they can learn to do, something that will focus their attention, and something that may encourage them to eat the food. You and your child will enjoy time together and create a healthy meal! 

Always begin by washing hands. Use running water and a little soap to scrub around the fingers and the front and back of the hands. Sing the ABC song together so you both know how long to wash your hands.

Two-year-olds are learning to use the large muscles in their arms. Have them tro:

• Scrubbing vegetables and fruits 
• Wiping table tops
• Dipping foods
• Washing lettuce and salad greens

Three-year-olds are learning to use their hands. Have them try:

• Pouring pre-measured liquids into batter
• Spreading peanut butter, jelly, and similar foods
• Mixing ingredients
• Clearing unbreakable items from the table after a meal
• Putting unwanted items in the trash after cooking or after a meal

Four and Five-year-olds are learning to control small muscles in their hands. Have them try:

• Peeling foods, such as bananas, oranges, and hard-boiled eggs
• Cutting soft foods with a plastic knife
• Mashing soft fruits and vegetables with a fork
• Kneading dough
• Unloading dishwasher
• Setting the table
• Measuring dry ingredients
• Cracking eggs into a bowl
• Beating eggs or batter

Use bowls that won’t break. Use plastic knives and soft foods that cut easily. Adults should supervise the use of microwaves, ovens, burners, blenders, and other appliances.

Enjoy Sharing time, cooking experiences, and the food you prepare with your child. Looking for more tips on feeding your child? Check out these web sites: butler.ksu.edu – click on Family Consumer Sciences.

How much are young children affected by events that take place around them? A lot. Babies are active players in the world. Even though they may not understand the meaning of what they see or hear, children absorb the images that surround them and are deeply impacted by the emotions of the people they rely on for love and security.

There’s nothing “simple” about childhood. Young children are complex human beings who react to situations in different ways, depending on their age, stage of development, and temperament. Although you may not understand exactly why your child acts as she does, your sensitive response can help her cope during a difficult time.


Helping Your Child Cope 
The primary role of parents is to protect children. One important way to do this is to prevent their exposure to information they cannot handle. Babies and toddlers do not need to be told about traumatic events that they have no way of understanding. Keep the following in mind:

• Turn off the TV and radio news reports: don’t leave newspapers lying around.
• Ask friends and family members not to discuss scary events around your child.
• Maintain a regular routine with your child.
• Respond to your child’s need for increased attention, comfort, and reassurance. This will make him feel safer sooner.
• Pay close attention to your child’s feelings and validate them. Ignoring feelings does not make them go away. 
• Help your child identify his feelings by naming them (e.g.”scared,” “sad,” “angry”).
• Offer your child safe ways to express feelings, such as drawing, pretend play, or telling stories.
• Don’t discourage your child’s play because you find it disturbing. Many young children work through frightening events by reenacting them in play. If your child seems to be distressed by his play, comfort him and offer another activity.
• Be patient and calm when your child is clingy, whiny, and aggressive. He needs you to help him regain control and feel safe.
• Answer children’s questions according to their level of understanding: “Yes, a bad thing happened, but we are keeping you safe.”

Your World Has Changed. But The Joy of Parenting Prevails. 
Providing your child with sensitive and responsive care takes a lot of emotional and physical energy. But the everyday moments you share with your child can be healing for both of you. Do things together that feel good:

• Laugh and be silly together.
• Read your favorite stories.
• Listen to music and sing along.
• Take walks and enjoy new discoveries.
• Enjoy the warmth of cuddling close.
• Plan special outings like a picnic in the park, a trip to the zoo, or a visit to a friend.

This shared joy, and the sense of fulfillment that comes from it, can ease the burden and provide an important foundation for coping during these difficult times.

Perceptions are the ways we view things in our lives. Changing the way you think about a challenging event may help you feel better about that event. It may even give you additional strength to make improvements in your family’s life. Research has shown a link between perceptions and successful functioning.
Basically, four types of perceptions can make you feel better and improve your family’s functioning.

1. The view that your child’s special needs exist because of some specific cause or reason. This is called casual attribution. For instance, you may feel your child’s disability is the result of something you did (or did not do). Or what a health care professional did (or did not do). Or that genetics, a special purpose, or even fate caused the disability.

God has his reasons and never gives you a burden to heavy to carry.
Well, it’s not my fault. It’s something that is passed sown through the family. Other’s before me have dealt with this, so can I.
Now that I know what my child’s diagnosis is, I can move forward and do what needs to be done.
Identifying a cause makes people feel more in control of their situation. That control gives them strength. (Do you think your child’s disability is the result of some cause? If so, what? Does that make you feel better in any way?)

2. The view that you can control some things that happen in the life of your child with special needs. This is called mastery. If you think you can do something, you have a far better change of doing just that than the person with no confidence.
You can gain a sense of greater control by gathering as much information as possible. You may have heard the phrase “Information is power.” There is truth in that old saying.
Some people may join a parent advocacy group to make sure their child is fully included in daily school or renovate their house for their child with special needs. Taking direct action makes people feel better about their life.

I didn’t just sit there singing the blues. I went down to my local library and went through all their stuff. They even ordered some books for me. Then I talked with other doctors and compared what they said to my books. I wrote letters to my legislators when there was a bill going to be passed that I didn’t like. I even joined the advisory board of my child’s early intervention program Sitting around isn’t going to help my child or me.
(What have you actually done for your child with special needs? Did that make you feel better? Is there something else you can do for your child?)

3. The view that your situation-when compared with that of another individual-is better than that of the person you just compared yourself with. This is called social comparison. Some parents compare themselves with other parents who seem to be handling their lives well. In doing so,
these parents get encouraged by the good job they see. (“If they can do it, well, so can I.”) Then again, parents may compare themselves with others who are doing about the same. (“At least we are not alone.”)
If parents compare themselves with people whose lives seem more difficult, they may actually feel fortunate about a situation that had previously seemed difficult. Along this same line, people often say about their own lives: “It could have been worse.” This view makes them more accepting of life circumstances.
(Do you ever compare yourself with somebody else who has a child with special needs who is coping very well? What do you think makes that person cope with the situation better? How about your child?: Could that child’s condition be worse than it is today? If so, aren’t you glad that it isn’t?)

4. The view that your child with special needs contributes in a good way to your family and others. This is called positive contributions. Have you ever seen someone look at you in pity when that person notices your child for the first time? Or heard someone say, “I’m sorry,” when you tell them about your child? When people react that way it is because they think a child with a disability is a burden; they see only the negative, not the good.
But, your child may have taught your family patience, brought your family together, enlightened the family with a new perspective—a number of contributions. Your child, too, may have a beautiful singing voice, cheerful attitude, brilliant mind, or a host of other impressive talents or characteristics.
(How has your child changed your family for the better? What is one positive trait your child has? Would your family be better or worse off if your child was not with you?)

If you are interested in more information or other issues concerning families who have children with disabilities, please contact the Beach Center on Families and Disability at 3111 Haworth, University of Kansas, Lawrence, Kan. 66045 (913) 864-7600 for related products, including The Cognitive Coping Workshop Manual; Cognitive Coping, Families, and Disability (available from Brookes Publishing); The Kansas Inventory of Parental Perceptions; What Research Says About How Viewing Disability in Different Ways Aids Positive Coping Skills, etc.

Other Beach Center “How To” guidelines you can order for $.50 each (price includes postage) are:

Use Group Action Planning to Make Positive Changes in Your Family Member’s Life
Get a Family-Friendly IFSP
Tell People What You Want
Better the School Day of Your Student Requiring Technological Assistance
Obtain Quality, In-Home Nursing for Your Child Who Needs Technical Assistance
Begin Parent to Parent Support System
Use Group Parent Power To Make Things Happen
Reduce Challenging Behavior in Children With Developmental Disabilities
Encourage Desirable Behavior in Children With Developmental Disabilities
Recognize and Acknowledge Family Strengths
Permission granted to photocopy these guidelines. Please credit The Beach Center on Families and Disability

Children with developmental disabilities need to work and play in natural settings, learn new skills, and work toward being able to care for themselves. To do this, they must learn skills that will help them thrive in the community. A common approach to teaching social skills is called positive reinforcement. Simply put, this method teaches a person to act a certain way buy giving rewards to the person for correct behavior. (Sometimes, it takes many steps to reach the final behavior.) The proven theory is that if someone gets a reward for an action, then that person is more likely to do that right action again. Positive reinforcement has been studied in great detail since the 1930s and has been shown to be the single most important part of the learning process.

In positive behavioral support, a system used to discourage challenging behavior and increase desirable behavior, you always start with the question “Why does the person do the activity?” What purpose does the activity serve? (Often, children with aggressive or self-injurious behavior use their behavior as a form of communication. Once you have come up with some likely answers for the challenging behavior, watch the child over time and see if your answers are on target.)
When you want to encourage positive behavior, figure out the exact behavior that would benefit the child and people around the child. (An act, such as smiling, may be more simple than teaching self-feeding to a child with severe impairments. More complex tasks should be broken down into steps.)
Next, decide what the child (not you) views as rewards. One person’s preference is not the same as another’s. A key ingredient of positive behavioral support is putting yourself in “someone else’s shoes” and looking at the world through his or her eyes.

Typical rewards include:
Food 
Drink 
Sensations (listening to music) 
Materials (stickers, badges, certificates) 
Activities (playing with a favorite toy or video game, visiting a special friend) 
Privileges (extra free time, new seating arrangement

A good way to start is to ask the child what would be a reward. In situations where the child is unable to verbalize, you can try offering a choice of several objects and have the child pick a reward. Do this several times to make sure the sampling is correct.

Research shows that friendships give people with disabilities social, emotional, and practical supports and integrate them into community life. People with disabilities bring their own gifts, such as acceptance, to friendships. Wolfensberger (1988) said that people with mental retardation give spontaneity, trust, and simple enjoyment of life’s pleasures, honesty, and several other contributions to their non-disabled friends. 

To help facilitate friendships, you must be open to friendship development, flexible, and persevering. Orient toward the child’s strengths and allow the child to make his or her own choices, because the ability to make respected choices develops self independence.
 
With younger children, you might have to teach the child with a disability how to interact with his or her peers in play. You will also need to educate the peers. Start by discussing the child’s disability with playmates. Ask for questions. This encourages tolerance and understanding of individual differences. If the child has a communication disability, tell playmates ways to communicate with the child with a disability. 

(For more information, see A Guide to Thoughtful Friendship Facilitation for Education and Families by C. Beth Schuffner and Barbara Buswell. It is available from the PEAK Parent Center, 6055 Lehman Drive, #101, Colorado Springs, CO 80918.) 

Studies indicate that group size influences social play of children with disabilities. Two or three children play better with a child with a disability than larger groups. Another tip is to vary the children in the group. More sophisticated children allow the child with a disability to exhibit more leadership and problem solve. 

Play activity also factors in connections. Some toys (balls or board games) promote play with other children. Toys (such as books or crayons) encourage solitary play. Organize materials to promote interaction and have them in a defined area with sufficient space to play. Barbara Wolfe, University of Wisconsin-Eau Claire, who gives workshops on fostering young children’s friendships, suggests games that allow children with disabilities to help children interact. For instance, Shoe Mix-Up where children take off one shoe and close their eyes, while an adult hides the shoes and then tells children to search for the missing shoe, is one such game. If the child with a disability is unable to physically get his or her shoe, a peer will gladly help look for the missing shoe.

With older children, research shows that peer tutoring, cooperative learning, disability awareness training help children with and without disabilities to socialize, play and just hang out. Strategies that have proven to be successful are:
1. One-to-one matching. Here, in a formal volunteer program (such as Best Buddies, Natural Ties), a similar-aged peer, often as an academic course requirement, is matched with a similar aged peer with a disability. Many long-lasting friendships emerge from these formal matches.

2. Existing or formal networks. In the McGill Action Planning System (MAP S), the child and family are asked to look closely at their environment and plan for a better life by examining the child’s current relationships and coming up with ways to expand and improve those connections. A related method is Group Action Planning, which brings together family, friends, and community members to regularly problem solve for and with the child with a disability. For those who have few or no relationships, Circle of Friends is a method where peers are invited to make a commitment to a child with a disability. Often, this is done in the school setting and can be part of an existing club or a new one. Promoted to students similar to an extracurricular activity, this “friendship club” should allow members to choose the relationship they want to develop, such as in-school or after