Travel _ Relocating

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					Travel & Relocating

The Early Years of The Maap (p. 59)
Here is a letter I received from a woman in England who had phoned me while she was in the United States on vacation. She is interested in finding our if any one knows of any group or organization which provides supervised tours of areas in the United States. Her son is in his thirties and loves to travel.

Dear Susan, As I said on the phone, I would only be happy for my son to go on a holiday to the States if I could find a group with a group leader for him to join. He has been on many holidays of this kind in England, organized by the Ramblers Association and the Holiday Fellowship. Most of the people who go on these holidays tend to be “loners”, and so far these holidays have always worked out well for Lionel. I do not, of course, know whether similar organizations exist in the States… Name Withheld If any of you know of such an organization, please write to me and I’ll send your letter along to this woman. ******* The Early Years of The Maap (p. 63) In our last issue of The Maap a woman from England wrote to request information about tour groups which would cover points of interest in the United States and in which her autistic son could participate. My thanks to both Susan Robinson and the Los Angeles chapter of the Autism Society of America for sending in suggestions to meet this need. Susan Robinson suggests a book entitled Travel for the Disabled: A Handbook of Travel Resources and 500 Worldwide Access Guides by Helen Hecker, R.N. It was published in 1985 by Twin Peaks Press, The ISBN# is 0-933261-00-4.

***** Volume II 1993 (p. 3)

Dear Maap, Our family lives in Southern California, far from the glamour of Hollywood or, actually, far from “civilization”. Since June of ’92, we have been trying to find an adequate classroom in which to place our who is now 3 years and 7 months old. Antoine has PDD. His speech is emerging and although quite intelligent, he doesn’t harness his intelligence for any specific task without strong motivation. He is quasipotty trained. His self-help skills are improving every day and he is very coordinated. He is a singer. He ca vocalize any tune of his fancy. He enjoys manipulatives and would progress greatly if he had the right environment, i.e., a classroom where speech and language deficit is addressed with intensive remediation. area doesn’t provide this type of service because of lack of money (our district is very poor). Wealthier districts refuse to serve us because they have too many kids in their program. We have looked into all

possibilities, believe me. He is currently having private speech therapy and an educational consultant helps me to structure his learning. Our problem, and my request for help, is about the following: We have decided to leave Southern California, but don’t know where to go. We need to provide for our little guy, but also to have good school for our 3 older children, ages 14, 11, and 9. Has anybody among you, being in the same type of family setting, found an area that addresses successfully the needs of all our children? We will consider any affordable options. We have been looking at remedial help for our little one. My husband’s job in the Merchant Marines allows us to move anywhere in the continental U.S.A. Thank you for your help. Please address your response to: Dominique Ballante P.O. Box 126 Pearlblossom, CA 93553 Editor’s Reply: Dear Dominique, Many school districts use the argument (when parents are requesting ANY out-of-the-ordinary services) tha they don’t have sufficient funds to provide the services our children need. Indeed, finding the funding for uniq or improved programs is a great problem for them, but that is their responsibility under the law. However, whe the parents persist – sometimes to the point of a legal hearing process—they often receive the services their ch needs. Federal law says that school districts must provide developmentally disabled children with a free, appropriate program in the least restrictive environment possible. So, my first piece of advice would be that you make sure you have fully pursued every possible avenue of le redress with your present school system before you pull up stakes and move your whole family. Believe me, y are very likely to get the “we don’t have enough funds to provide a special program for your child” argument wherever you move. Granted, you may be lucky and succeed, but if you move to a new place and then get lous services, it will be a personal and financial hardship to you. However, if you are convinced that you must move, I would suggest that you go to your proposed new school district BEFORE you move there and get assurances of proper placement for Antoine, observe his potential classroom, and make sure that you can find a good physician, psychologist, or other professional who is (or is willing to become) knowledgeable about autism and Antoine’s needs. PLEASE let us know how things turn out for you. ******* Volume IV 1995 (p. 13) Editor’s Note: We printed the next three articles from “Momentum,” September/October 1995. If you would like to subscribe to “Momentum” send $30.00 to Autism Society of Los Angeles, Momentum, 3975 Landmark St., Culver City, CA 90232. NEW DIRECTIONS VACATIONS New Directions is a non-profit agency which offers tours and vacations for people with disabilities all during the year. For information, call: 805-967-2841. All trips are chaperoned by staff. Prices vary by length and location of trip. ******* Volume IV 1996 (p. 11)

New Directions New Directions is a non-profit organization that provides travel and special education exchange programs for people with developmental disabilities. The purpose of the program is to promote the understanding, acceptance, and appreciation of people with disabilities as important and contributing members of our society. New Directions annually sponsors trips in the United States and abroad. They offer a wide range of challenging activities, such as skiing, river rafting, camping, sailing, biking tours, hot air ballooning, and snorkeling. The tour guides and chaperones are all professional people who have been trained to work with people with developmental disabilities. Costs average between $1,000. and $3,000 per tour. For more information, contact New Directions Inc., 5276 Hollister Ave., Suite 207, Santa Barbara, CA 93111….or call (805) 967-2841. ******* Volume II 1998 (p. 22) SUMMER TRAVEL OPPORTUNITIES New Directions is a travel agency that services individuals with disabilities. They provide supported group travel opportunities to locations all over the world! Write: 5276 Hollister Ave., Suite 207, Santa Barbara, CA 93111. Phone #805-967-2841. E-mail: ******* Volume II 1999 (p. 2-4)

Editor’s Note: The following article was sent by Jennifer Overton, an actor and writer living in Halifax Nova Scotia with her husband and 6 year old autistic spectrum, hyperlexic son. This was first aired on CBC (Canadian Broadcasting Corporation) nationally, in February. Hello Susan, This is the second piece I wrote and recorded about life with our high functioning 6 year old, Nicholas. Hopefully it will stir memories of your own family’s experiences. Enjoy… Am I insane? I hang up the phone. Yup. Definitely lost my mind. I have just informed my mother that we will be coming for a visit. For TEN DAYS. Call the looney bin—I’m on my way! It’s not that I don’t love my family. That is not the issue. The issue is that a cross country trip is stressful in and of itself, but add an autistic child to the mix and the stressometer, well, it doesn’t register that high. A trip to Grandma’s house? Oma’s house in our case. What have I done?! I can call back and renege. But she was so thrilled. How naïve of her. Had she forgotten the last visit? The disastrous long weekend last year, the first time he had been home with me since his diagnosis? Did she really not remember the birthday party where he had screamed at the top of his lungs when everyone sang, pressing his head between my knees, then raced over to the table and knocked the entire chocolate fudge cheesecake—my sister’s favorite—to the floor? Or the next day when one of his young cousins

unwittingly got too close, and my son put his hands around his neck? I remember. The emotional roller coaster. The frustration and embarrassment about his strange behavior. The pain at seeing his autism outlined so hard and cold against the warm background of my “normal” family. Catching those glimpses of pity in my siblings’ eyes. All weekend I fought the impulse to run into my mothers arms. I was afraid that if I gave in, I would never stop crying. (sigh) Even reliving the pain of that weekend, I don’t pick up the phone to cancel our plans. No matter what the emotional cost, he should know his extended family. And I want to see them. We have all grown a lot in the past year. Maybe I am even ready to be held in my mother’s arms, and not be consumed by grief. And so the weeks of preparation begin. First, I e-mail siblings and lay some ground rules: Respect his sensory sensitivities. Don’t approach him quickly. Never extend a hand to him or try to hug him. Don’t crowd him. Talk quietly to him. Avoid sudden loud noises or warn him that they are coming. When we come to your house, please allocate a room where he can go when he feels over stimulated. I balance my fear of seeming demanding and overbearing with the realization that they will appreciate some concrete ideas on how to avoid a repeat of the last visit. Having prepared those on the other end, I begin working on the home front. My son is a visual learner and reads way above age level, so I make calendars with our itinerary. I write stories about our upcoming trip: who we will see, where he will sleep, the plane ride. We role play and act out scripts that are aimed at giving him strategies to deal with problematic situations. Our house is plastered with pictures, calendars and stories about our upcoming trip. The day for departure arrives. I pack carefully. His most comfortable clothes. His most beloved toys and books. Everything possible to reduce his stress level. His electronic Wheel of Fortune game is a must for the plane. Check. I don’t care if it drives the other passengers crazy—believe me, if they knew the alternative, they would thank me. Head phones. Check. Favorite snacks. Check. OK. Had I done everything? Oops, pack those social stories and an erasable calendar. Check. OK. Across the river and into the woods, to Oma’s house we go… I try not to show my nervousness. What if he shrieks or tantrums in the airport or on the plane? I half consider pinning a sign to his back that reads, I CAN’T HELP IT—I’M AUTISTIC. Nah—LET people think that bad parenting is the cause of his behavior if they want to. We board the plane, my son wearing his headphones. The stewardess sweetly asks, “Something wrong with his ears?” I just smile and say “yes.” When we are seated, my son asks, “Stewardess, may I have a pillow, or a combination of two pillows?” He gets two. So what if she thinks he’s a bit odd. I guess she doesn’t watch game shows. We arrive at Oma’s house, the plane trip having been relatively uneventful. Thank goodness. But we can’t relax yet. We are by no means out of the woods. Each of the ten days we are there, we spend a great deal of time preparing him for upcoming events, and guiding him through difficult times. It isn’t easy. And he has his meltdown moments, but with quiet coaching they don’t last long. Yes, I have more than one pang of resentment at seeing my siblings with their comparatively easy children. Yup, my heart pinches to see three of his cousins on the floor in a cousin sandwich, and my son in the corner, oblivious to their infectious giggling. And no question that he is autistic. His greeting upon entering people’s houses is “Do you have the game show network?”, and then he lists all the hosts of all the game shows and recites the entire 24 hour Game Show Network schedule. Sure, this is weird, but they are amazed to see him, a kid in Kindergarten, creating Wheel of Fortune puzzles with their scrabble tiles and playing out the game. And he makes us laugh. One evening at my sister’s he declares: “I don’t like my dinner, unfortunately. May I have some dessert?” I am so proud of him. He quietly excuses himself when things get too much. He remembers to say

“you’re too close” when a younger cousin runs up to him. He and I share secret looks across the room of “I did it” and “You did it!” And he amazes us when he plays Hide and Seek with his cousin! No prompting, no cues. Spontaneous. Fabulous! So what if he helps his cousin into the hiding place before covering his eyes to count—he is playing with another child and loving it! “Let’s do it again!” he shouts. I simply beam. Speechless, wanting desperately to hug him. But I can’t. So I am content to quietly beam, and give him lots of verbal praise. Then comes the day to leave and go back to Halifax. He doesn’t want to leave! “When will I come back to Oma’s house?” he asks. Then suggests, “I think maybe Friday.” Sweetheart. As we stand at the door saying our goodbyes, my autistic son runs up to my mother and gives her a hug. “Goodbye Oma.” We all blink back a tear. Now it’s my turn to hug my mother. I walk, not run, into her arms. Smiling, not crying. She whispers how proud she is of me. We stand in a long embrace, our damp cheeks pressed together. We turn and walk out the door, on the way back to Halifax and our life. All of us stronger for this journey. We have gone over the river and through the woods, and out the other side, safely to Oma’s house. The way seems clearer now. Not as scary. We can do this. ******** Volume I 2000 p. 12-14 The following contains exerts from the journal kept by a group of travelers to the Himalayas from Kfar Tikva, Israel, the village where Jonathan Singer (son of Bernice Singer) resides. Jonathan and some of his Kfar Tikva neighbors who went on this journey have autism. Thirteen members of Kfar Tikva, 4 members of Tfar Tikva of Brazil, and one resident of the Palestinian territories participated. We believe this excursion was the very first time in history that a group of people with challenges has hiked the Himalayas. “WHERE THERE’S A WILL,.. THERE’S A WAY!” The First Day--Nov. 2 At long last, after all the training and preparations we started on our way. There was great excitement when during the flight to New Delhi the captain greeted us via the public address system, “A successful journey to the delegates of Kfar Tikva who are travelling to the Himalayas.” The Second Day—Nov. 3 We arrived at New Dehli. We left the airport and got a shock: this is a crazy and astonishing country—millions of people in the streets, smells, sights, animals, all mixed up together—Amazing! We toured the marketplace in the center of the city and the Sikh’s temple. We returned to the airport for our flight to Katmandu. The Israeli Consul of Nepal, Mr. Shlomi Granov, was waiting for us at the airport in Katmandu. We were most pleased to see him. The Third Day—Nov. 4 We toured Katmandu. Our guides from the Geographic Society told us that they don’t think the group will succeed in getting even to Namche Bazar. That’s what they think! They don’t know the members of Kfar Tikva!!

The Fourth and Fifth Days—Nov. 5 & 6 Flight from Katmandu to Lukla and out on the track. We reached Phakding and here three members decided to finish the track. We had a ceremony identical to our planned final ceremony to bid them farewell. The theme was “Every One and His Everest.” They will return to Katmandu. The Sixth Day—Nov. 7 We have reached Namche Bazar—an absolutely beautiful place. We are now at a height of 3,400 meters. Namche Bazar is surrounded by snowy mountains and we have already seen Everest. It is hard to put the beauty here into words. We will stay a night and day in Namche Bazar to get acclimated. The Eighth Day—Nov. 9 We start our ascent to Tiengpoche. This is a very hard ascent, shorter than that to Namche Bazar but doubly hard. We arrive at Tiengpoche after dark. We slept in the salon of a rooming house where we were all gathered around a big stove in the middle of the room. Other guests slept in the same room and when we say we slept with them we mean it literally, that is, in the same beds! The Ninth Day—Nov. 10 A day of rest in Tiengpoche. We visited a Buddhist monastery where there are special and particularly loud trumpets. The group is fantastic: dealing with their difficulties, in their relationships with each other and the escorts, enjoying everything around them and all the experiences and adventures we are going through together. It is really hard to describe in writing the feeling of love, the pride and satisfaction we all feel. The Tenth Day—Nov. 11 Last night we looked at the time-table and saw that we wouldn’t have enough time to get to the base camp. We decided to get to 4,000 meters and to make the ceremony there. By afternoon we reached a beautiful hill at a height of 4,000 meters. In this special corner we performed our ceremony. We flew the flags of the countries whose delegates took part in the expedition: Israel, Brazil, and the Palestinian authority. We also put a sign: Reda, the Palestinian representative, addressed us thus: “We are all here, Israeli, Palestinian and Brazilian as a symbol of good will, love and friendship between different nations and I hope that this unity will show itself in politics and also in the daily lives of everyone. May the Almighty bless us.” He was very moved when he said these words in Arabic and Hebrew and even cried, and all us with him. Saul, the representative from Brazil, spoke next and said similar things—whilst crying passionately together with all of us. Eli spoke for the participants of Kfar Tikva and said: “I have achieved my goal. I wanted to fulfill a dream and have done so. It is a pity that three members who left us earlier on are not with us—but they are in our hearts.” The ceremony was impressive and we all hugged each other. There were tears in the eyes of each of us including the staff, the television crew and the Sherpas. We looked around us and couldn’t believe it— did we really succeed in getting here and realizing our dream? We reached our Everest and proved to ourselves and all the world that, indeed, where there’s a will there’s a way! The Eleventh Day—Nov. 12

Today we returned to Namche Bazar. We received a phone call from the President’s house. Mrs. Reuma Weitzman congratulated us, saying, “Mazal Tov (congratulations) to you all, I am proud of you that you did this.” Mrs. Weitzman, and the President of the State after her, spoke to Tamar and congratulated her. Yitzhak Mordichai, the Minister of Transport, who happened to be in their house, joined in the congratualtions. The warm and heartfelt telephone conversation moved us all a great deal. Today is Friday. We lit candles to bring in the Sabbath and had a fantastic evening—a festive meal, songs and dances. The Fourteenth Day—Nov. 15 We arrived back in Katmandu and met up with other members of our group. We exchanged stories and experiences and were all excited to be together again. The Fifteenth Day—Nov. 16 This morning we met Israel’s Ambassador to Nepal, Mr. Shlomo Grandov, and his family. The meeting was very heartwarming and interesting. During our visit, Mr. Shimon Peres phoned to congratulate us. Tamar wanted to know how people with special needs were treated. The ambassador replied that no interest was taken in this matter and that the services were of a very low standard and almost non-existent. The Sixteenth Day—Nov. 17 We are spending the last evening in Katmandu. We are packing and coming home, but apart from the personal belongings we are bringing with us, we are returning loaded with many experiences and memories. We went on an expedition and we wanted to prove that “where there’s a will there’s a way” and no obstacle whatsoever will prevent a person from carrying out his will. We proved this to ourselves, to our escorts and we hope this fact will show itself in the film taken, in the personal photo taken and in the stories we will tell for many days to come. ******** Volume III 2001 p. 3 Susan, I just rec’d my Vol. 2, 2001 Maap newsletter. After reading your letter on the front, I had to stop and email you. This letter brought tears to my eyes-it really hit home. After having our second boy, my husband and I have long dreamed of camping and various other excursions with our sons. Little did we know that Mac would have a speech delay along with many

strange behaviors. Shortly before his 3 birthday, he was diagnosed with autism. Mac is an escaper. We live in “Fort Knox” – fencing, gates, latches, locks, and rigged up wiring. Mac screams, hits, and bangs his head. Mac doesn’t play with other children. Mac’s diet is very limited. The vacation dreams began to fizzle. I am reminded by you that our family is not alone. Your prayer means so much! We will just need to go about things a little different, and at a slower pace than others. Mac loves the sand box . Mac is the happiest climber at the play ground. Mac is a fish out of water. Mac thrives outside running and throwing balls, and collecting various items from nature. Mac’s big brother is a wonderful, understanding and caring boy. Hey, Disney may be many moons away, vacations may consist of simple overnighters mainly with friends or relatives, but I wouldn’t trade it for the world! This is Mac, and we love him for who he is!!!

Wendy Deiotte *******