Coming Soon - Eden's Summer Camp

For more information please visit www.camp-eden.org

"Sometimes a good night sleep is not as easy as boiling some warm milk." - By Nina Finkler - Director of Eden Outreach Support Services.

Parents and families of children with autism are often faced with many challenges. Even the simple day to day activities of eating, sleeping and going to the supermarket can be difficult for these families. Here are some helpful strategies that have proven successful over time.

Sleep/Nighttime Issues
Many times, we have heard parents of children with autism talk about how their child will not sleep through the night or has trouble falling asleep. While the lack of sleep often does not impact the child with autism, the other members of the family are often sleep deprived, stressed out and aggravated. We all can understand the value of a good night sleep. The first step in handling sleep related issues is to first realize that, as a parent, you cannot make your child sleep. Your focus must shift from having your child sleep to having your child safely remain in their bedroom and not disrupting the rest of the household. In order to do this you must:

1) Establish a consistent bedtime routine- This will teach your child the sequence of events that lead up to bedtime as well as what will happen once they go to bed.
2) Set up their room for safety- This may include window alarms or door alarms. If your child has the potential for climbing (on dressers, shelves etc), the availability of climbing must be removed.
3) Provide safe and acceptable activities- Since the goal is to have your child remain in their room and not come out repeatedly, they need to have activities to do that are reinforcing, novel, and will keep them busy thereby reducing the need to come out and explore the rest of the house.
4) Remain Neutral- If your child comes out of their room- you must remain neutral in tone and actions while immediately bringing them back to their room. Do not make this “bringing back” action reinforcing with prolonged kisses and ‘I Love You’s’ which can send a mixed message and increased attention. You should simply redirect back into their room, say ‘goodnight’, and close the door.
5) REINFORCE!- If your child stays in their room for the night, you need to provide a lot of positive reinforcement as this will motivate the child to repeat the actions in the future.

If the issue is focused more on your child sleeping in your bed with you and you have decided it is time for them to sleep in their own bed, you can gradually change this behavior as well. Start off with a sleeping bag, air mattress or cot right next to your bed. Your child can sleep in that bed for a period of a few nights. After those few nights, gradually move their mini bed away from yours towards the doorway, then outside your room, then in the hallway, into their room, and then into their big bed. Again for each successful night, they need to be REINFORCED.

A few final thoughts…as a parent, you have to be emotionally and physically ready to take on a problem behavior such a sleep. You also have to ready to make the commitment to be consistent with your response each time the behavior occurs. It may seem like an overwhelming challenge at first, but it can be done.

Story of Jason McElwain

My Piece of the Puzzle - By Bianca DelVecchio

Dinner begins peacefully enough for once. However, Jake must have sensed that we were more tranquil than usual (that, or he is not a fan of cauliflower), because at that moment when we lift our forks, he starts. He arches his back to the side in his chair and begins his strained, borderline-crying whine that puts us on edge. I live with him, and that sound, almost melodic in a broken way, the way people under stress sing to calm their nerves, still peeves me. He abandons his food, running into the living room, where he drops to the floor, and gives his head a few sound smacks directly on the temples for good measure. He lets out a yell as if we’re torturing him, though none of us have moved from the table. My mother follows Jake cautiously with her eyes for a moment, looks at his untouched plate, and quips “Well, I guess he didn’t like dinner”.

Our family continues eating without bothering to look at him, though we are all thinking about the fate of our poor defenseless TV, left alone with Jake’s rage. As expected, he gives our TV a shove. The TV does not seem to care much, so instead he goes to my father, gives him a small push on his shoulder in hopes of igniting a spectacular confrontation, and quickly darts away. Our eyes meet each other in mutual understanding of Jake’s pathetic, petty attempt at egging on my dad, and we all burst out laughing, because that is all we can do, and it was pretty funny. In comparison with other episodes, tonight was tame; no pulled down drapes, no holes in the wall, and no wrestling match with my father on the mat in the living room. In other words, a good day in our household.

Jake is severely Autistic. I say severely because I don’t want you to have a mental image of my brother as a Rain Man- like savant playing his newly composed rhapsody on the piano. This is someone who can be extremely self injurious. The experiences I have had living with Jake has not made me a benevolent perfect angel with the patience of a saint (far from that), but he has taught me about the nature of people, and has made me reflect on who I am, something I had never liked doing.

Jake has a way of revealing the true colors of people, which came in quite handy. As he became more behavioral, we noticed our relatives withdraw from our lives until they weren’t a part of it anymore. This was also the time where we had a parade of respite workers stream in our house, and leave just as swiftly. Even the school he attended couldn’t deal with him. They would send him home claiming he had a rash, when in fact it was Jake pinching himself all over his legs, to the point of bleeding. Then of course, there were the numerous strangers who would stare or yell at my parents insisting my brother be put away in a residence, as if they had a true understanding of kids like Jake. At that point we felt we couldn’t trust anyone to help Jake except ourselves.

Later, our family would find people who actually understood and accepted Jake’s Autism. There was Eden, a school that probably deserves a whole novel. There, I met people who genuinely liked Jake, even after having to hold him down during a tantrum. They also significantly brought down his behaviors, allowing the old Jake to come back. The staff became my role models. They were real down to earth people, who were happy with and dedicated to their job, unlike many of the people who worked with Jake before.

More importantly, the staff also became my friends. Jake obviously was their main focus, but they didn’t neglect the rest of the family. The behaviorist would come over every few weeks to talk strategy with my mom about what to do with Jake, and then would ask me about how I was doing in school, an unprecedented action. For the first time, I had people with whom I could be blunt with about Jake, because they understood. They knew how much of a terror Jake could be (though even when he’s in rare form, they say he’s being ‘naughty’). I could never talk about that with other people, which I suppose kind of alienated me from others, since they never knew all about me.

Through Eden I became involved in volunteering at respite weekends with special needs adults, which led to me running a program at a special needs camp. My experiences at respite weekends and camp have helped me by requiring me to interact with people, and lead them, of all things, when I felt more like hiding in my room with a book. As a result I discovered that contrary to what teachers have told me, I can project my voice, occasionally to the point of losing it. I can command people to engage in an activity I planned (most of them anyway) and they actually listen to me! Beforehand, I was very much a wallflower; this work experience helped me come out of my comfort zone. At camp, it wasn’t about me and my insecurities; it was about the campers. My job that summer helped me discover my strengths.

Mind you, Eden has not cured Jake. They aren’t going to; it can’t be done, no matter what the media or Jenny McCarthy says. The staff make him easier to live with, and give Jake a better quality of life. Jake still has tantrums, especially now that he is a teenager. Raging teen hormones are not conducive to autism. I still get angry at Jake, though he can’t control what he does during his mood swings. Out of pent up stress and frustration, I have been hostile with him, though he has never purposely hurt me back. He shouldn’t, but I know he still loves me; every time we ask him who his best friend is, he always says my name. Sure, it doesn’t seem like a big deal, but when your brother is not very verbal, you take what you can get.

Every time I think about how life without Jake would be like, the negatives always weigh out the positives. Sure, there would be considerably less stress in our daily lives, I would have a closer relationship with my relatives, and my parents would finally get some sleep. But there would be so many people I would never have met, people who I can’t see living without now. By pure accident, I found out my chemistry teacher’s nephew had autism; her demeanor completely changed when I told her about Jake. Knowing that others are going through the same thing as you is a reassuring feeling; you know you’re not alone. For the longest time, I felt alone, and now I want to help others going through my situation. I want them to know there’s no such thing as having good or bad feelings about their sibling, but it’s something that needs to be talked about. My sister Sofia (5) already has anxiety and questions about Jake, and I have to explain to her that Jake’s self injurious behaviors are not done intentionally, but for safety reasons, I bring her upstairs when Jake is in rare form. She’ll grumble about being removed from watching her favorite TV program and how annoying Jake is. I’m glad she’s able to complain about Jake to me. Hopefully she will continue to confide in me about how she feels about our brother.
Now, if you’ll excuse me, I have to drag Jake away from the food cabinet, because I really don’t want to clean up another box of dry spaghetti from the floor… again… but that’s life.

Parents press states to force insurers to cover costly autism therapy; 7 states already do

By CARLA K. JOHNSON Associated Press Writer
Article Courtesy of the Associated Press

Click below to view this Important AP Story.

U.N. event focuses on autism

The diplomatic community calls for global attention to autism. CNN's Christiane Amanpour reports.

" You can't make this stuff up! "

John (not his real name) is an elementary student with high-functioning autism who goes to school in one of the districts we consult with. John has heightened awareness/anxiety about strangers. The school psychologist, Dr. Lewis (not his real name), was new to John’s class. When he entered the class, John got quite upset and hollered, “Stranger! Danger! Stranger! Danger! Stranger! Danger! Stranger! Danger!” The classroom teacher did an excellent job of explaining to John who Dr. Lewis was and that Dr. Lewis would be coming into the class weekly for social skills training.

After several visits, John was completely comfortable with Dr. Lewis. During one of Dr. Lewis’ social skills training sessions, John asked him, “Dr. Lewis, do you have children?” Dr. Lewis said “No,” and briefly explained why not. John then asked, “Dr. Lewis, do you have a wife?” Dr. Lewis, who was single, said to John “No,” and again briefly explained why not. John then said, “Dr. Lewis, do you have a fiancée?” and then, “Dr. Lewis, do you have a girl friend?” Again, Dr. Lewis explained briefly why not. John was quiet for the rest of the session. As Dr. Lewis said goodbye to the students as he was leaving, John yelled out, “Goodbye, Dr. Lewis. Have fun with your parents!”

Parent Training Series - Disability and the Law

Eden Family of Autism Services in conjunction with the Law Offices of Hinkle, Fingles and Prior are holding free Parent Training on the topic of Disability and the Law. These seminars will be held at Eden’s Clayton Center in West Windsor, New Jersey. Attendance is free but due to limited seating pre-registration is required.

If you are interested in attending please go to http://www.freeautismsupport.org/ and register or call (888) 358-8418 ext.704. – Once you have registered you will receive a confirmation email with driving instructions one week before your scheduled attendance.

Below you will find all dates and topics for these upcoming seminars.

Disability and the Law

Monday, November 10th, 2008 – 6:30pm to 8:30pm – New Jersey’s ‘Real Life Choices’ Program for Adults.

Wednesday, December 10th, 2008 6:30pm to 8:30pm – Transition from School to Adult Life

Wednesday, March 11th, 2009 – 6:30pm to 8:30pm – Understanding Medicaid, SSI and other Important Entitlements.

Monday, April 6th, 2009 – 6:30pm t0 8:30pm – Accessing Appropriate Adult Services

Wednesday, May 13th – 6:30pm to 8:30pm – Guardianship and Financial Planning

Wednesday, June 10th, 2009 – 6:30pm to 8:30pm – Beyond Group Homes: Option for housing and Residential Supports

Father and his autistic son rescued at sea after 12 hour ordeal.

A father and his autistic son were rescued after being swept into the sea by strong currents off the coast of Florida. They tread water for 12 hours before being spotted - A remarkable story!

Harry Smith of CBS reports.

September 15th - Chicago Tribune article.

"Dads with autistic children get a place to learn, brag and vent"

By Rex W. Huppke

James Harlan quickly saw good coming from the autism awareness program his wife started in west suburban Proviso Township. But as the group—aptly named The Answer Inc.—grew larger, Harlan noticed something missing at its meetings."Where are the men?" he asked his wife, Debra Vines. "Where are the fathers? It was all women."

Click on the picture below to continue this article.

Autism in the Hispanic Community

Horizonte host Richard Ruelas introduces a story produced by Marcos Najera. The story emphasizes the lack of information hispanic parents have regarding autism and early detection.

"It's not as easy as follow the leader." From Anne Holmes - Chief Clinical Officer - Eden Family of Autism Services, Princeton NJ

During the last 32 years, as I have had the pleasure of working with many families who have children with autism, I have observed consistent themes that, to me, potentially represent some measures of quality of life for families and individuals with autism. I see the themes of the need for effective communication, highest level of independence, and the ability to follow directions, that is, compliancy.

I would like this paper to focus on the area of following directions/compliancy, as I see many families struggle with this, particularly as their child gets older. The ability to follow directions from parents, not only when a child is willing to respond, but as if not more important, when the child is not in the mood to respond, is a challenge for all parents, with or without a child with special needs. For parents of a child with autism, this becomes a critical factor, and if following directions is not a skill that is well established in the home environment, inevitably these parents have significant difficulties with their children when they become adolescents and then adults. It is not so bad to see a 2-year old not respond to a parent’s direction to stand up when he has thrown himself on the floor in a store. However, when a 15-year old throws himself on the floor and does not respond to the parent’s directions to stand up, it becomes quite a different scene.

So, how does one establish compliancy and following directions? It is not difficult to understand this concept, as it is to integrate the concept to everyday life, 24 hours a day, 7 days a week, 365 days a year. For those parents who want to start today, it’s simple! Every time you give a simple direction, ensure that your child follows through, physically assisting them if they don’t, then praising them for following the direction. It is absolutely essential that the parent gives the direction ONCE, then follows through. Why? If a child can anticipate that his mother or father is going to ask him ten or fifteen times to do something, he will by nature not respond, knowing that he will be asked again and again. It is important that parents teach their children that the first direction is important. There is no negativity to teaching “following directions,” even if the child is resistant to direction. Parents should physically prompt their child to comply, and then praise him, even if the child was resistant to complying.

Another key to success in this area that I have noted over my years of working with families, is that it is important for parents to only give a direction when they are absolutely positive that they can follow through and prompt the desired response. For example; if mom is on the telephone and making dinner, this would not be the appropriate time to tell her child to climb down off the couch; this direction should only be given when the mother has free hands to give the direction and walk over and assist her child in completing the task. It is amazing how many directions are given by parents and not followed through upon because of a parent either being preoccupied or deciding that the request was not that important in the end anyway.

Since there are many opportunities throughout the day to give simple directions, the opportunity for practice is built into everyday life. Directions can be as simple as, “Come here,” “Stand up,” “Sit down,” “Give to Mommy/Daddy,” “Put on ,” “Clean up,” “Give Mommy/Daddy a kiss.” I have worked with families who have been successful and not successful in teaching their child to follow their directions. I urge all parents of children with autism to establish or re-establish this control. Parents who have been unsuccessful in teaching their child to follow directions have all consistently ended in a difficult situation at best, as their child approached the teenage years. The families I know who were successful with teaching following directions when their child was young, had much less challenges through adolescence and adulthood. With that in mind, I urge all parents to start today and make following directions a family goal, in order to reap the benefits, not only in the present but also in the future.

Eden By MoonLight

Eden Institute a nonprofit organization dedicate to meeting the lifespan needs of individuals with Austin is holding it annual "Eden by Moonlight" charity event this September 12th. They say the twenties where roaring but I don't think they could hold a candle to this party..

Take a quick peek at last years "Eden by Moonlight".