Perhaps these words of understanding and encouragement are what you need today.
Emily Perl Kingsley writes
"I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."
1987 by Emily Perl Kingsley. All rights reserved
Have a great weekend!
We gathered this article from AutismSociety.org, but we feel it may be also beneficial not only to children that have Autism, but applies lot of other types of kids with (or even without) special needs.
Most parents and caregivers view safety as a significant concern regarding their children in the home environment. Modifications such as placing gates in stairwells and doorways, covering electrical outlets and using childproof locks on cabinets are among the things many parents do to ensure safety.
In response to these concerns, the Autism Society has partnered with law enforcement and a preparedness consultant to create disaster preparedness tips and a Safe and Sound packet. The packet contains an emergency decal that can be placed on your door or automobile window and a companion piece called the Personal Information Record.
For parents of "typical" children, such safety precautions are usually necessary for the first few years of childhood, after which the child develops, matures and no longer requires the use of modifications. However, for parents of children on the autism spectrum, the story is sometimes different. There are myriad additional issues to consider when addressing the safety of the individual with autism, family members and the home environment — often throughout the life of the individual with ASD.
Consider the many behaviors an individual with autism may engage in that could be unsafe: throwing utensils, breaking plates and cups, sweeping items off surfaces, dumping drawers and bins, and climbing out of or breaking windows. Or consider what can happen when natural curiosity and household appliances converge: putting items in appliances, flushing things down the sink or toilet, touching burners, turning on hot faucets, inserting items into electrical sockets, chewing on wires, crawling into a washer or dryer. Finally, consider the potential dangers that can result from playing with matches, lighters or fire.
Often children with autism who display such behavioral concerns do not understand the ramifications of their actions, which can be bothersome at best and devastatingly tragic at worst. Therefore, it is the responsibility of the caregivers in the home to both provide both a safe environment and teach their children to be safe.
There are several environmental and safety modifications that can be made in the home as well as steps that can be taken to prevent unsafe or inappropriate behaviors. The following suggestions have been found helpful in preventing dangerous behaviors and ensuring a safer environment. The suggestions range from using locks for security or limiting the individual's access to labeling every functional item and area in the home with photographs or symbols to assist in communication.
Parents sometimes balk initially at the idea of having to place locks on doors or cabinets, place alarms outside a child's bedroom or label the house with photos or cards. They often say: "This is not a classroom." However, your home is indeed a natural learning environment, just like a classroom.
Establish priority areas for modification. Modify the most important areas first — the individual's bedroom, bathroom, leisure areas, kitchen and back yard — since these are the primary areas of interaction for many children. When getting started, think about the room(s) in which the child spends the most time; for some children, it would be a recreation/family room, while for others it might be the bedroom or kitchen.
In addition, consider the behaviors to be modified and the relationship of those behaviors to the environment. Behavior modification alters an individual’s behavior through positive and negative reinforcement. Remember, behaviors always serve some purpose, and in order to alter a particular behavior you must first understand it. If the individual likes to put things in the toilet or run hot water in the bath, modifications should begin in the bathroom. If the child runs out of the house, modifications should begin with securing exterior doors with locks.
Arrange the Furniture Appropriately Arrange the furniture in a way that "makes sense" for the activities the individual is expected to do. That is, if the individual will be doing "seated" activities, ensure that there are clear table surfaces and appropriate chairs. If the child frequently runs out of a room via a predictable path, arrange the furniture and close doors so he or she is unable to escape. Limit the need for excessive movement and/or transition. Move furniture away from shelves or places where the child may climb.
Keep furniture surfaces clear (if the individual is a "sweeper") and place items out of reach on shelves or bins, or lock things away. In addition, use gates or barriers to prevent falling down steps or to limit access to certain areas in the home.
Use Locks and Alarms Where Appropriate For individuals who run away or leave the home without supervision (also referred to as "elopement" or “wandering”), it is important to place locks and alarms on exterior doors and windows. This may prevent the child from leaving, or at the very least notify you if he/she attempts to open a potential exit route.
Some parents also express grave concerns about their child leaving their bedroom at night. It is a critical issue related to safety as well as overall quality of life for the family — parents need to get sleep while being assured their child is secure. It is advisable to call your local police and fire department and alert them of your child’s tendency to wander or run/dart. You may also want to find out if programs such as Take Me Home or Smart911 are available in your area.
It is also helpful to reach out to our local affiliates and other parent groups for suggestions and support. Parents are often a great source of creative and affective methods to manage the most challenging aspects of ASD. Search “Autism Society Affiliates” and “Information and Support” in the Autism Society’s resource database, Autism Source.
Door and window alarms can be a key investment in keeping your child safe. Consulting a professional who installs alarms is also a good idea, as he/she can advise you of the legal and larger safety implications of the security measure you are considering. If you feel more than an alarm may be needed and you choose to put locks on the doors, use locks that you are easy open: a hook-and-eye lock, or a slide-bolt. Some parents place the lock key above the door frame of the room for quick and easy access. It is imperative that you have immediate access to any locked room in the event of fire or other emergency.
It may also be necessary to use safety locks (often plastic devices) to secure items that may be unsafe for the individual. Many parents place these locks on bathroom and kitchen cabinets to prevent access to items in the cabinets.
Safeguard Your Windows
If your child likes to climb out of windows, place locks on them. Hardware stores carry special locks for just this purpose. If your child breaks glass or pounds windows, replace the glass panes with Plexiglas to prevent injury. Some parents must place wooden boards over windows to prevent injury or elopement.
Make Electrical Outlets and Appliances Safe Cover or remove electrical outlets and access to electrical appliances. Use plastic knob covers (also available at hardware stores) for doors, faucets, ovens and stove burners. Lock the door to the room or rooms with the washer or dryer, appliances or power tools to limit access.
Ensure that all wiring for appliances and electronics is concealed in a way that the child cannot play with the wires. Individuals on the autism spectrum often have a curious interest in how things work, but that can be coupled with a pervasive "unawareness" of dangerous situations — a potentially dangerous combination when it comes to electrical materials.
Lock Hazardous Items Away Secure items that are dangerous if ingested, such as detergents, chemicals, cleaning supplies, pesticides, medications and small items a child might mouth or chew. It is easy for an individual with autism to confuse a bottle of yellow cleaning fluid with juice based on appearance or to pour/spill liquids (some of which may be poisonous or toxic) out of a bottle.
Also, pills that look like candy can easily be eaten by mistake. Place such items out of reach or in cabinets with locks. Keep the poison control phone number in a permanent place that is clearly in view.
Secure items/materials that are dangerous or unsafe if used without supervision, such as sharp objects/ utensils (scissors, knives, razor blades). Many children like to cut things (clothing, curtains, wires, books, etc.) into pieces with scissors or knives when unsupervised. If necessary, use scissors that have blunted ends (child-safety scissors), and be sure to provide supervision when the child is involved in cutting activities. In addition, secure items that need to be limited (i.e., candy, video games, lighters, matches, TV, DVD player, toilet tank covers) with a lock or ties.
Label Everyday Items Place visual labels (symbols, photos, words, textures) on functional items, rooms, cabinets, drawers, bins, closets and anything that has relevance for the child. In a well-labeled environment, a child with ASD may better understand what is expected and be less likely to engage in undesirable behaviors. In addition, if the child understands the function of an item (e.g., a piece of furniture), he/she is more likely to use it for its intended purpose.For example, if visual labels for sleeping are placed on the bed, the child may be less likely to view the bed as a trampoline.
Placing labels on drawers and closets may reduce power struggles over asking your child to put things away because he/she will know where to put them.
Organize Everyday Items Organize functional items in see-through plastic bins/boxes with visual labels (symbols, photos, words, textures) so the child can see and use the receptacles. Place the bins on shelves or in places the child can easily see and access. Once again, the better the organization, order and structure in the environment, the more likely it will reduce the frustration level of a child on the autism spectrum and the less likely he/she will be to engage in inappropriate behaviors.
Institute Appropriate Seating Ensuring the individual is seated properly at a table or work station can help prevent behavioral problems, such as throwing objects, knocking over furniture, self-stimulatory behaviors and acts of aggression. For example, some children need to be seated in chairs with arms or a wrap-around-style desk when doing work.
Others may need to be seated in a place where they cannot easily escape from the table, such as against the wall or in a corner. In addition, a proper sitting posture (body at a right angle and feet flat on the floor) will help facilitate good learning and/or eating behaviors.
Use Visual Signs Use dividers, tape boundaries, and signs as needed for setting expectations and limits. For example, the use of STOP signs on doors, drawers furniture, and appliances has helped some children understand that these items/ areas are off-limits. For children who climb on high surfaces or enter areas they should not, STOP signs will let them know what they are doing is dangerous. Using color tape to designate boundaries on carpets, floors or walls can help to visually remind children where their bodies need to remain.
Secure Eating Utensils and Place Settings When using utensils during mealtimes, consider tying utensils to nylon string and attaching them to the chair or leg of the table. This way if the child throws the utensils, they will remain attached to the string. Children have "unintentionally" thrown forks across the table and injured other family members. If the child throws or sweeps plates, bowls, and cups, secure them with adhesive Velcro and attach them to a secure placement. Use plastic or rubber plates, bowls, and cups to prevent shattering of breakable items.
Safeguard Bath Items/Toys Consider keeping bath toys in a bag or bin away from the tub and unavailable until bathing and hair washing are competed. This will help the child focus on bathing and prevent power struggles while in the tub. You do not want a child flailing around in a slippery bathtub since he/she or you could be injured.
Keep bath items (soap, washcloth, shampoo, sponges, etc.) together in a plastic bin or rubber bag and accessible. Replace open-lip bottles with pump dispensers so the child will not empty or ingest the contents.
Remember Fire Safety Regarding fire safety, it is important to keep lighters and matches out of reach or locked up. Place safety covers over gas stoves and oven knobs so a child cannot turn them on. Always supervise children closely when there is an active fire in the fireplace or a barbecue with open flames. Many community fire departments can provide stickers (called tot finders) for children's bedroom windows so that in the event of a fire, firefighters can locate a child's bedroom quickly. While it may be difficult to teach an individual on the autism spectrum about the dangerous nature of fire, it may be possible to teach him/her about how to behave when it comes to fire safety.
Developing social stories (with photographs, pictures, words) about smoke detectors, fire drills, fire alarms, touching fire, etc. and reading the stories to the child on a regular basis is the place to begin. (A social story is a short, personalized story that explains the subtle cues in social situations and breaks down a situation or task into easy-to-follow steps.)
In addition to social stories, the use of visuals (photos, pictures) can assist the child in understanding what they are expected to do and what they are not supposed to do. For example, a "no touching the oven burners" sign could consist of a photograph of the oven burners with a bright red "no" symbol or STOP sign over the photograph to visually display the rule for the child.
Consider Identification Options It is important that your child have proper identification in the event he/she runs away or gets lost and is unable to communicate effectively. Once a child with ASD becomes mobile, he/she may decide to walk out of the home without supervision. Children on the autism spectrum often like to be outside and in motion, so leaving the home to go outside is common. Once outside the home, the child is vulnerable and may be unable to get home or communicate where he/she lives.
If the child will tolerate wearing a medical ID bracelet or necklace, get one (they can be found your local drug store). However, many children with autism do not like to wear jewelry, so the next best option is to place iron-on labels into each garment. Some children can be taught to carry and provide an identification card from a wallet or fanny pack and can learn to show their identification cards if they are not able to verbalize the information to another person. Some parents have also used specially designed tracking devices, perimeter systems or service dogs for children on the spectrum who are known to elope.
Introduce Intervention Techniques to Teach Safety In addition to the physical modifications to your home, you will want to introduce behavior modification techniques to teach your child how to be safe and act appropriately. There is a wide variety of augmentative behavioral interventions that can be employed to do this. These interventions include:
Resources Most of the items and products (safety knobs for appliances, locks, etc.) mentioned above can be purchased from hardware stores, department stores and children's stores in your community. You can also contact your fire department to see whether they have locator stickers or other materials that foster fire safety.
- AutismSociety.org ( original article can be found here http://www.autism-society.org/living-with-autism/how-we-can-help/safe-and-sound/safety-in-the-home.html )
The worry of a child wandering is great enough on it's own -- but when that child has special needs the stakes are even higher. The online journal, Pediatrics, published a survey results from over 1200 families containing children with autism. It revealed that 49 percent of those children wandered off at least once after the age of four. Of that 49 percent, nearly half of the children who disappeared for a period of time, were away long enough to be labeled as “missing.”
The response to this needs to be diffusing this fear with information and knowledge so that parents are prepared and preventative. We have several resources that touch on what wandering can look like with kids that have special needs, ways to have them prepared if it ever happens to them, and several different resources that can help make sure that none of these situations turn dire. There are resources at the links below, and an inforgraphic with a rundown of information below that.
Packet on Missing Children with Special Needs
Autism Wandering and Elopement Initiative
Big Red Safety Toolkit
Why do Children with Autism Wander?
I was invited by one our Pacific Islander leaders Dr. Sela Panapasa, Assistant Research Scientist at University of Michigan, to the 1st Native Hawaiian and Pacific Islander Health Disparity & Health Equity Conference. The two day conference was held in Los Angeles from Monday, September 24 through Tuesday, September 25, 2012, bringing together Native Hawaiian and Pacific Islander (NHPI) people from the continent, Hawaii, and the U.S. associated Pacific Islands, as well as community stakeholders, advocates, policy makers, philanthropic leaders, researchers, and students.
The conference theme was “Envision the Future: Translating Research into Healthy Native Hawaiian and Pacific Islander Communities,” and during our opening ceremony Dr. Sela talked about how we can come together as a Native Hawaiian and Pacific Islander to help each other on health issues that we face in our communities around the nations. Our next speaker which was our keynote speaker for the day was Honorable Howard K. Koh, Assistant Secretary for Health, U.S. Department of Health and Human Services. Dr. Howard, mentioned in his remarks that he will do everything he can to help the NHPI communities to be in better health. “Native Hawaiian and Pacific Islander Health Disparities & Health Equity I” , “Translating Research into Healthy Communities”, and “State Department of Health Programs and Strategies to Eliminate NHPI Health Disparities and Contribute to Health Equity” were the topics for the plenary after the opening ceremony. After our plenary we split into four groups for our breakout sessions. “Leading Health Issues and Understudied Health Conditions Confronting NHPI Communities” was the name of the one I attended and the speaker for this group was Justina Langidrik, Republic of Marshall Islands Ministry of Health Secretary. I was one of the speakers in the “Healthcare Access and Utilization” and my goal was to talk about the healthcare access in the Marshallese communities in Northwest Arkansas and explain to my audiences why Marshallese are not eligible for federal program to get better access to healthcare.
Even though it was only two day conference, I believe we gained lot of information about the direction we are heading with the NHPI health disparities. Dr. James S. Jackson, Director and Research Professor at University of Michigan, stated in his closing remark “This conference will help to promote the collaboration, strong leadership, and commitment needed to move forward to eliminate NHPI health disparities”. I have faith that all conference attendees (my brothers and sisters in the Pacific) will be inspired and will use the presentations to guide them in helping to create a future that will bring benefits to all the Pacific People.
--Albious Latior, Marshallese Families Out Reach Coordinator
Staff of the Northwest Arkansas Community Parent Resource Center (including original content as well as curated links to various authors around the web.)