Being a Good Sister

Hi there J.

There is a great book called 'Ten things every child with autism wishes you knew' by Ellen Notbohm. You can buy it through Amazon.

Really changed my perspective on Autism after reading it!

J.

There are so many resources! A good simple place to start are the books by Jenny McCarthy. She writes honestly with a lot of the research simplified for those of us unfamiliar with Autism. Her books also include a ton of resources, Dr.s, other books, etc within them. Her information covers the U.S. so your sister could find Dr.s in whatever state she is in.

The Dr.'s I am referring to are DAN! Dr.'s. DAN (Defeat Autism Now) Dr.'s whose goal is treating and curing autism. They have seen amazing results with diet, therapies, etc. Your sister could contact one and get all the info she needs on the different levels of autism, what treatments are available, which treatments are government funded so she can afford them, etc. There are tons of autism support networks that she can join to help her.

If I were you I would just start reading up on everything I could. I found the Jenny McCarthy books and the library and it snowballed from there. Your sister has been given a challenge and she is going to need all the support and understanding you can give her. This will be difficult but not impossible. Goodluck to both of you.

I am trying to think what I would want my siblings to do for me in this instance. My answer: I would want them to educate themselves and their families about autism. This way when you visit and spend time with her family you will know how to act. Educate yourself and then talk to her about what her little boy's specific needs are. This would probably help any unease about visitors in their home. I know it isn't direct help, but she may appreciate it in the long run.

Hi - anything by Jenny McCarthy - she has been really an advocate for helping families to help turn around or even "cure" autism and what to look for like in the Childhood vaccines - to get them or not - She has I think like 3 books out now and is doing a speaking engagement across the USA and you can google her and see all the work she has done and check out Amazon for her books - Good luck :) S. :)

Hi J., My soon to be step daughter is 13 and has been autistic/mildly retarded since she had an immediate and sever reaction to her immunization shots at 18 months old. You can simply google "autism" and all kinds of great websites come up. However, have her join www.meetup.com (it's free!) and search "special needs" and see if any local support groups pop up. I'm a member of an EV group and it's helpful to be around other parents that experience the same things as you. So I hope this helps her! P.S. My son is six and God bless you for your patience in wanting to be a K teacher! :o)

There is a great organization called ACT today. go to their website below and if there is not a chapter in your sisters state, she can contact the organization and they should be able to hook her up with a support group in her area
http://www.azacttoday.org/

Hi J.,
My 4 year old son was diagnosed in Sept 07, just before his 3rd birthday. We have used ABA, music, speech, OT - in other words all behavioral therapy and it has done wonders for him. I agree with Kristina P - try behavior before any of those other up and coming money making treatments. If that doesn't improve symptoms, then research those alternative methods. If she lives in AZ, I'd recommend contacting SARRC (Southwest Autism Research and Resource Center) and take any classes or programs they offer. They were an extremely valuable resource for our entire family. Also, get the book Overcoming Autism by Lynn Kern Koegel and Claire Lazebnik. It offers practical, usable strategies that work and it's an easy read. It also works with ALL typical kids too...I use many of the strategies with my "typical" daughter and her language skyrocketed, and behavior improved. After only 1 1/2 years since our diagnosis and all of the training/therapies our family and my son went through, most people cannot tell that he has a diagnosis of anything. In fact, his student teacher thought he was one of the 2-3 typical kids out of a class of 13 in his preschool class when the teacher told her to guess.
Best of luck, and I would be available if your sister or you ever want to contact me further with other questions.

Many schools have early intervention programs for preschoolers. She should check into her local schools. You've received some great advice. Just be careful how you give this info to your sister. Approach the situation with love and concern.

Jenny MaCarthy wrote a book about it! she tells it like it is! good luck

Google Special needs project - America's disability bookstore.

J.,
I have 4 kids, the three oldest were all dx with autism. Some really good books for understanding autism are "A Parent's Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrive" by Sally Ozonoff, Geraldine Dawson, and James McPartland and Thinking in Pictures by Temple Grandin.

Where does your sister live? If she lives in Arizona, she could join a local support group(I know of one in the east and one in the west valleys. There are a few yahoo groups (Phoenix Autism Support is one).

There are lots of websites, it depends on what you are looking for. I would encourage your sister to stay with more main stream approaches - therapy (OT, PT, Speech), ABA - habilitation, etc. We have had a lot of success with our children doing basic behavioral modification/teaching.

I would also hope that she quickly learns that consistency with a child vs consistency with a child who has autism are too different things. I always giggle inside when people tell me they are amazed with my consistency with my children (for us, it is a matter of survival).

Also talk with parents that have children that are teenagers and adults with autism. When I spoke with them, they are not concerned about what caused it (they consider it a waste of time) or about fancy, expensive "new treatments" that will "cure" her child. Having children is a lot of hard work, having a kid with autism is more hard work. Anyone who promises other, is making money (or trying to make money) off of you some how. Also look at the kids of the parents that are giving advice, I have seen a lot of parents that can't handle their kids, giving tons of advice. I sought out parents that had successful experiences with helping their kids develop and function in the real world.

One last thought, some kids may not recover or become higher functioning. That is not necessarily your sister's fault. Some kids do well with help, some don't. There is still a lot not known about autism, but listen to the stuff that is known and take it one step at a time.

If you sister wants to contact me, I'd be willing to talk with her, or email with her to help her.
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