Five tips for a happy future for kids with autism

by Dr. Krysti DeZonia – Autism Support Network

Parents’ greatest worry is what will happen to their children when they are no longer able to watch over and advocate for them. Here are some tips about what you should focus on to assure your children with special needs have the best chance for a happy life after you are gone.

1. Be sure there are people in their life who are not paid to be there. You may be lucky enough to have one or more people who will take up where you leave off. Many people are not as lucky. Start now by developing a formal or informal circle of support for your child. There are specific steps you can take to do this. If you want to know what they are, read my blog entry titled “Who Will Take Over.”

2. Social skills are the most important thing to work on with your child. Many may argue that eliminating problem behaviors or developing effective communication are the most important skills a child can acquire, and I agree that they are critical. Believe it or not, when your child is 40 years old, there are plenty of people (usually staff who work in the field) who will want to spend time with him even if he doesn’t talk and even if he hits them. This is because they have found a way to connect. People fall in love with a personality or a smile or because of the hug they get at the end of the day. Focus your energy on helping your child learn to do things that will connect him to other people. Until they can do this on their own, be sure you have plenty of videos, stories, and “All About Me” books that show others the loveable, quirky, and unique person behind the autism. Lonely people rarely lead happy lives.

3. The more interests they have and things they like to do, the happier they will be. The great thing about a lot of kids and adults with special needs is that they often have passionate interests. Celebrate this—it could become a future career. The fact is that the more things they can do to occupy their own time, the easier it is to be around them. If they are easy to spend time with, more people will want to do this. We are all happiest when we are engaged in something we enjoy. Offer your child hundreds of big and little things to do and hope that a few of these will stick. Make sure EVERYONE knows about their favorite activities.

4. Unless your child can do it on their own, YOU need to make a plan to assure their happy future. Special needs trusts, letters of intent, and futures planning are all great and necessary, but they don’t take the place of a life quality plan. You need to think about each category of life (residential, friendships, recreation, etc.) and write out what you believe they need in these areas in order to be happy. If they are able, your child should help you. If this is too big a job to tackle, you can have someone do it for you. To learn more, go to www.teriinc.org/ialq and click on Life Quality Planning.

5. Help them do things that society values: Unfortunately, despite the fact that we have made some progress, people with significant special needs are still viewed by much of society as folks who aren’t able to make much of a contribution. Prove them wrong. Think beyond recycling and cleaning tables when you are helping your child get ready for adult life. Instead, think, “What does society value?” We value friends (can your child become a “friend” to someone in a nursing home?); community volunteers (can your child be part of the group that volunteers once a month to paint houses for the poor?); members (of a church, synagogue, club, team, or class); home and business owners (Google “Poppin Joes in US World and News Report” for an inspirational story). Start now and keep expanding. Even people with very severe autism can contribute, you just need to get them connected. If you can afford it, get a Special Needs Life Quality Coach to help you.

Here’s a final, bonus tip. Your kids won’t be happy now, or in the future, if YOU are exhausted, broke, and overwhelmed. Step back, get reasonable, and focus on what you need to do (or stop doing) so that you are able to be a parent who has the time and energy to simply enjoy their child, as they are, right now. You are more important to your child’s present and future life quality than any therapy, plan, or treatment.

Dr. Krysti DeZonia is Director of Education, Research, and Life Quality Planning and Support and co-founder of TERI (Training, Education, and Research Institute-www.teriinc.org). She received her Bachelor’s degree in Education and her Master’s Degree in special education from Northern Arizona University and Prescott College. She continued her educational pursuits, earning her Doctorate in Education from the University of California San Diego. “Dr.K.” has over 30 years of experience working with children and adults with a wide range of developmental disabilities and their families, with particular experience with individuals on the autism spectrum.

Read more: http://www.autismsupportnetwork.com/news/five-tips-happy-future-kids-autism-93899473#ixzz1id2KKYax

Friends and autism: Does my child have too few friends?

by Dr. Robert Naseef & Dr. Cindy Ariel

Question: Does My Child with Autism Have Too Few Friends?

I am very worried because my son who is now 10 years old has very limited friends. Actually he likes to play with just one other boy who also has issues. It doesn’t seem to bother him, but I am very worried about how lonely he will be when he is older. I have many friends and some of them since grade school. I don’t want my child to suffer as I fear he will, and even more so in the future. Can you help me with my own worries and also with my son?

Answer: From Dr. Robert Naseef:
Your dilemma raises the concerns of many dedicated and loving parents. That your child seems happy now is a blessing not to be taken lightly, but obviously that is not a guarantee of future happiness. Pleasant memories of your own childhood are also a good thing. The good and bad memories of our own childhood are never far for all parents who inevitably have important formative experiences in their personal history. We want our children to have happy experiences like our own and we want to protect them from some painful incidents. In this sense, we have one foot in the past (in the families we originated in), and one foot in the present, in the family we have created.

The diagnosis of autism carries with it difficulties in relating and communicating, which impacts the expectations that parents have for their children. This does not mean that a child is incapable of relating and communicating, but it does mean that life will be very different than expected. Undoubtedly your son’s condition has been a challenge for your family. I want to call your attention to the essay, “Don’t Mourn for Us” by Jim Sinclair. This adult with autism helps parents to sort out these very important issues. As he puts it, “Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person – and if it were possible, the person you’d have left would not be the same person you started with.”

Navigating Love and Autism

by The NewYork Times

GREENFIELD, Mass. — The first night they slept entwined on his futon, Jack Robison, 19, who had since childhood thought of himself as “not like the other humans,” regarded Kirsten Lindsmith with undisguised tenderness.

She was the only girl to have ever asked questions about his obsessive interests — chemistry, libertarian politics, the small drone aircraft he was building in his kitchen — as though she actually cared to hear his answer. To Jack, who has a form of autism called Asperger syndrome, her mind was uncannily like his. She was also, he thought, beautiful.

The Hidden Potential of Autistic Kids

by Live Science

When I was in fifth grade, my brother Alex started correcting my homework. This would not have been weird, except that he was in kindergarten—and autistic. His disorder, characterized by repetitive behaviors and difficulty with social interactions and communication, made it hard for him to listen to his teachers. He was often kicked out of class for not being able to sit for more than a few seconds at a time. Even now, almost 15 years later, he can still barely scratch out his name. But he could look at my page of neatly written words or math problems and pick out which ones were wrong.

Many researchers are starting to rethink how much we really know about autistic people and their abilities. These researchers are coming to the conclusion that we might be underestimating what they are capable of contributing to society. Autism is a spectrum disease with two very different ends. At one extreme are “high functioning” people who often hold jobs and keep friends and can get along well in the world. At the other, “low functioning” side are people who cannot operate on their own. Many of them are diagnosed with mental retardation and have to be kept under constant care. But these diagnoses focus on what autistic people cannot do. Now a growing number of scientists are turning that around to look at what autistic people are good at.

Kambing Untuk Lukman

by Endah W Soekarsono

1 November 2011, 09:03 (saya mengirim SMS kepada mama Lukman, salah seorang murid SD kami yang memiliki kecenderungan autistik)

Mama Lukman, mau mengajarkan konsep kurban ke Lukman? Tapi lebih ke sensasi membeli kambing, merawat, mengenali bagian kambing, dan menyerahkan ke mesjid ya, bukan pemotongannya.

1 November, 09:07 (setelah dibalas oleh Mama Lukman: “Mau, tapi gimana caranya?”)

Kalau berkenan, boleh kambingnya di sini? Tapi kalau memang mau memotong kurban ya, dan tidak ada tempat khusus yang dituju.

1 November, 09:14 (setelah dibalas lagi, bahwa akan ditanyakan ke papanya. Mama Lukman menambahkan bahwa Reza, kakak Lukman, mungkin akan senang saja bila kambing mereka dikirim ke Tetum, sekalipun papa mamanya belum pernah berkurban di sekolahnya. Reza ketika TK bersekolah di Tetum, dan kini kelas IV SD di Depok).

Iya, seandainya bisa buat Lukman, mungkin akan berarti, karena dia lagi menikmati bersama teman. Meskipun akan ada kambing yang direncanakan akan “dibeli” oleh Kelas Merkurius, akan berbeda kalau Lukman “punya kambing”. Di rumah dia mendengar diskusi tentang hewan kurban. Saya terinspirasi ini setelah lihat Lukman begitu tekunnya menggambar di antara Pandya dan Raffi.  Dan tadi saya berpapasan dengan Lukman saat berjalan bersama teman-temannya ke kebun untuk bermain musik.

(melakukan kegiatan motorik halus, ataupun kegiatan bersama kelompok adalah “sesuatu” dengan proses panjang, dan tidak mudah, bagi Lukman sejak dia berada di Kelas Darat, empat tahun lalu).

12 important needs of siblings and tips to address these needs

from Autism Support Network

1. SIBLINGS NEED COMMUNICATION THAT IS OPEN, HONEST, DEVELOPMENTALLY APPROPRIATE, AND ONGOING. Parents may need to deal with their own thoughts and feelings before they can effectively share information with siblings. Children may show their stress through their withdrawal or through inappropriate behaviors. Siblings may be reluctant to ask questions due to not knowing what to ask or out of fear of hurting the parent. While doing research on siblings, Sandra Harris found that developmentally appropriate information can buffer the negative effects of a potentially stressful event (Harris, 1994).

2. SIBLINGS NEED DEVELOPMENTALLY APPROPRIATE AND ONGOING INFORMATION ABOUT THEIR SIBLINGS’ ASD. Anxiety is most frequently the result of lack of information. Without information about a siblings’ disability, younger children may worry about “catching” the disability and/or whether they caused it. The young child will only be able to understand specific traits that they can see,
like the fact that the sibling does not talk or likes to line up their toys.

Believe In Your Child

By Rabbi Y.Y. Rubinstein

When I started my teaching career in my first school, I was filled to the brim with principles and ideas which I was convinced would enable me to become the teaching success of the century. Training college had taught me all the modern techniques: Psychology, Sociology and all the rest. In particular, I was convinced of the value of honesty and truth in education. There was simply no point in beating around the bush — the children would have to be honest with me, and I would be the same with them.

And so when it came to the annual report cards, I took it for granted that every parent would value my refreshingly frank comments. If a child had been disruptive and had wasted her time I said so, bullies were exposed, cheaters revealed and the angelic elite duly praised. Then two weeks later came the follow up… parents evening. This was the chance to explain my Report Card comments in full, and, no doubt, enjoy the deep gratitude which would be bestowed upon me by satisfied parents.

Now that I have school children of my own, I look back on the boyish and confident grin with which I greeted Mr and Mrs Proctor with disbelief and amazement. I now know that if any teacher dares to criticise any of my almost totally perfect offspring, it is only because they are mentally defective sadists, Anti-Semitic, or Anti-Semitic mentally defective sadists. Mr and Mrs Proctor seemed to have a similar view of me that night. Most of the parents did.

Do you believe in your children more than anyone else–even more than they believe in themselves?

by Anne Hart

Do you, as a mom believe in your children more than anyone else—even more than they believe in themselves? Are you strict, but loving or just strict with not so much loving? Or are you loving and rewarding, but not strict? Is your goal to help your children do the best they can with what the children have to offer?

What happens when Sacramento mothers respond to the recent Wall Street Journal articles by Amy Chua, “Why Chinese Mothers Are Superior?” According to the Wall Street Journal article, Amy Chua is a professor at Yale Law School and author of “Day of Empire” and “World on Fire: How Exporting Free Market Democracy Breeds Ethnic Hatred and Global Instability.” The Wall Street Journal essay is excerpted from “Battle Hymn of the Tiger Mother” by Amy Chua, to be published this week by the Penguin Press, a member of Penguin Group (USA) Inc.

Is it an ethnic custom in Sacramento or anywhere else to demand excellence in school work from your children at all grade levels? Also check out the website, “The Tiger Mother Responds to Readers.” The term “Chinese Mother” also applies to Japanese and Korean mothers.

Kenapa Kamu Tertawa?

By Endah W Soekarsono

Sore ini lengan kiri saya bengkak. Ya, tadi pagi saya digigit Lukman, anak spesial di sekolah kami. Dia menggigit saya ketika saya berusaha mengurai jari-jarinya yang mencengkeram jari seorang kakak sambil menangis. Begitu datang dia memang menangis keras sambil mengatakan, “Aku tidak mau sekolah.”

Ibunya langsung pulang karena beliau pasti sudah mafhum bahwa cara terbaik ya meninggalkan anak sekalipun dalam keadaan menangis. Mungkin itu adalah trik si anak saja. Dari nada tangisnya memang tampaknya ada sesuatu di rumah, tetapi tidak berarti tidak sekolah kan …..

Pembiasaan adalah hal yang kami tanamkan kepada setiap anak di sekolah kami. Sekali mereka diizinkan tidak bersekolah bukan karena sakit, kami khawatir itu akan melekat di benaknya. Dan dengan tangisan, kami akan meluluskan permintaannya.

Duniaku Mulai Berwarna

By Endah W Soekarsono

Kelasku tetap sama, Kak Wiwik tetap di sana, namun teman-temanku tidak ada. Mereka ada di kelas sebelah. Foto-foto mereka ada di pintu kelas sebelah, tapi fotoku tidak ada di sana. Kupegangi kertas yang ditempeli foto-foto itu, dan kubalik setiap kali aku melewatinya. Aku tidak suka.

Ya, aku tidak suka dengan kelas baruku. Teman-temanku tidak kukenal. Apalagi ada seorang anak yang selalu dekat Kak Wiwik, Lukman*) namanya.