[SPECIALFAMILIESGUIDE] Advice for a father in pain; New sibling resource; Cats and Asperger's

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robertnaseef wrote: Reprinted by permission from the Philadelphia Inquirer, Mon, Jan. 08, 2007 Inside Out | A seriously ill son, and an agonizing father By Dan Gottlieb Dear Dr. Gottlieb, I am writing to you because I am in so much pain. I was a student in Philadelphia in 1998, and now I am living back in my native Egypt with my wife and two wonderful boys, Sileem and Mostafa. Sileem is 14 and Mostafa is 9. Five months ago, Mostafa became very ill. He had many tests, but none of the doctors we saw could diagnose it; the only thing they agreed on was that he had an obstruction in his bile duct and needed a stent. It felt like my precious son was dying. Finally another surgeon said his gallbladder and bile duct had to be removed. Despite all these problems, we had hope for his improved health. But then an ultrasound showed that his liver and spleen were enlarged. It looks like our son has to live his life with a most horrible disease. We are not mentally ready for this and we

do not know how to deal with him or what to say. I cannot work, sleep or eat. Our lives have totally changed. The boy was always healthy and active. He loved school and was an excellent student. He loved life. Now, all of this is gone. Throughout this nightmare, he has been most cooperative. He never resented anything about his illness. I am very angry at what is happening and sad for my son. How can I give him the power and patience to face his illness? How can my wife and I face what seems to be a lifelong crisis? How do we live?- Amr Dear Amr, Your story is heartbreaking. What to do? Whenever we are traumatized or terrified or face unfathomable loss, first you cry. So my first advice is to allow yourselves to cry. Cry as long and as deeply as you need to. In a trauma like yours, emotions that feel contradictory live right next to one another - emotions like outrage and helplessness, great strength and weakness, deep love and great loneliness. Ideally one should just take time and let the emotions diminish in their intensity so you can see the path you must take. But in crisis, it feels as though time is racing and we must keep moving. Amr, you suffer

because you love your precious son. And of course you are angry; anyone who has experienced a theft would be angry. And you had your vision of your son's life stolen. Your anger and fear can drive you to find better doctors, research his illness, and move mountains if you have to. But your anger can also keep you disconnected from the great gentle love you feel for Mostafa. I wouldn't worry too much about giving your son patience and power to face his illness. I would imagine everyone in your family feels pretty alone right now. So your son probably needs the same thing you do; understanding, love and companionship. Hold his hand, look into his beautiful face, and ask him what it's like to be going through this. Then listen. Listen with

sadness and helplessness, listen with grief and listen with great love. I wish you and your family peace. • A week later, I received the following e-mail from Amr: In contradiction to the report of the ultrasound, the blood test he did last Thursday came out OK. This came as great news for all of us. We were supposed to repeat the ultrasound yesterday, but my wife and I

decided to wait. We wanted to enjoy the good news. The illness of my son has taught me that adversity can bring out the best in us. We live in a world of mass distraction that deprives us from inner peace and sometimes our humanity. This horror has helped me reclaim those things. "Inside Out" appears every other week. Clinical psychologist and family therapist Dan Gottlieb can also be heard Mondays at noon on WHYY-FM (90.9). E-mail him at DrDanGottliebaol. Dr. Dan Gottlieb Reads from His Best Selling Book Letters To Sam at http://www.whyy.org/tv12/letterstosam.html Dr. Dan Gottlieb, psychologist and talk show host of 91FM's radio program, Voices In The Family reads excerpts from his emotionally charged and boldly personal book, Letters To Sam. When his grandson Sam was born, Dan began writing a series of letters that he hoped would one day help Sam handle his own life. What resulted was a book that teaches us all how to find life's meaning. Watch video excerpts from Dr. Dan's book, Letters to Sam. Compassion Works Both Ways - Watch » Your Birthday Gift To Me - Watch » Give Kindness A Chance - Watch » Your Perfection - Watch » ************************************************** Announcing the SibKids and SibNet Listservs (please share this with families and service providers in the disability, health, and mental health communities!) The Sibling Support Project of the Arc of the United States is pleased to announce SibNet and SibKids. SibNet and SibKids are the Internet's only listservs for and about brothers and sisters of people with special health, developmental, and emotional needs. Both SibKids (for younger brothers and sisters) and SibNet (for older siblings) allow brothers and sisters an opportunity to connect with their peers from around the world. Both listservs have

members from the US, Canada, Australia, England, Japan and elsewhere. SibNet (started in 1996) and SibKids (started in 1997) are remarkably warm, thoughtful, and informative communities where young and adult brothers and sisters share information and discuss issues of common interest. Anyone who has email can subscribe to SibKids and SibNet. For a no-cost subscription and to learn more about SibKids and SibNet, please visit the Sibling Support Project's Web Page (see address below). Finally, if you have further questions about SibKids, SibNet, our Sibshops, or the work of the Sibling Support Project, please contact: Don Meyer, Director Sibling Support Project 6512 23rd Ave NW #213 Seattle, WA 98117 donmeyersiblingsupport (DOT) org www.siblingsupport.org ************************************************************************* New from Kingsley Publishers All Cats Have Asperger Syndrome by Kathy Hoopmann 'There is a great deal of truth in humour. If you have only just begun to discover why someone with Asperger's syndrome is different, this book will inform and entertain you. The descriptions provide an accurate balance between the qualities and difficulties associated with

Asperger's syndrome, while the photographs will make the journey of discovery enjoyable and remarkable.'- Tony Attwood, author of Asperger's Syndrome and The Complete Guide to Asperger's Syndrome 'The one thing I notice most about cats, and respect them for, is their independence. It's a funny thing because this is also what I notice about my Aspie friends. In fact, I see this in my own life as well. It's a unique quality that sets us apart from most other humans. Just like cats are not like dogs. I mean we wouldn't want them to be, would we? Kathy's humorous book that highlights the unique qualities of individuals with Asperger's has us "down to a T".' All Cats Have Asperger Syndrome takes a playful look at Asperger Syndrome (AS), drawing inspiration from the

feline world in a way that will strike a chord with all those who are familiar with AS. Delightful colour photographs of cats bring to life familiar characteristics such as sensitive hearing, scampering at the first sign of being stroked, and particular eating habits. Touching, humorous and insightful, this book evokes the difficulties and joys of raising a child who is different and leaves the reader with a sense of the dignity, individuality, and potential of people with AS. This engaging book is an ideal, gentle introduction to the world of AS. ************************************************************** As a psychologist who works with families of children with autism, I frequently counsel parents and family members to think of their child as different and not defective. For several years now, I have helped parents to see their child's social signals are more like those of a cat, that is, they often initiate contact when they want and need it and in their own way. This endearing contribution helps readers of all ages to see how children with Asperger's are different socially and that understanding that difference is the key to establishing contact and a rewarding relationship. This is a wonderful and enlightening coffee table book for homes and offices. Naseef, Ph.D. is the author of "Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability" and co-editor "Voices from the Spectrum: Parents, Grandparents, Siblings, People With Autism, and Professionals Share Their Wisdom." Presentations Naseef gives lectures and workshops internationally. Find out more at http://www.alternativechoices.com/presentations.htm. See a brief video at http://www.talkautism.com/Components/Video/Video.aspx?v=1 ********************************************************************* If you think thus information may be of use to someone you know, please forward this e-mail or direct them to subscribe at http://groups.yahoo.com/group/SPECIALFAMILIESGUIDE/ Best regards- Naseef http://alternativechoices.com/specialfamilies.htm Find out about "Voices from the Spectrum" and see photos of the essay writers at: http://www.amazon.com/gp/product/1843107864/qid=1143312927/sr=1-1/ref=sr_1_1/002-4430253-3063208?s=books & v=glance & n=283155 Check out "Special Children, Challenged Parents" at: http://www.amazon.com/gp/product/1557665354/ref=pd_ecc_rvi_2/104-2314304-1031948?ie=UTF8

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