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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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.

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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