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Readers Respond: What's Your Advice for Parents of a Child Newly Diagnosed With Autism?

Responses: 23

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If you're the parent of a child with autism, chances are you've gotten quite an education since you first heard that diagnosis. What would you say today to parents who are just getting the news? Tell them about that book that explained everything, that website full of resources, that e-mail group you still lean on, that experience with your child that made you see things differently. Those of us who have been there have important gifts to give those who have not yet done that. Offer your words of wisdom and experience here. Tell Your Tips

No longer a hopeless diagnosis

My 15 year old son has been recovered since 2006. So much to share….Get connected to other parents; address both the cause and symptoms you see in our child; get your OWN evaluations, independent of school - multidisciplinary, biomedical and therapeutic; the social part must be addressed - they will not evolve without intervention in this area, as this is the root deficit in the definition of an ASD. Every child has their own blend of issues and root causes - an individualized program for your child has the most optimal outcome. You can do this!!!! Ashley, http://hiddenrecovery.com
—Guest Ashley

pressure

My ot told me to do pressure exersizes with Oliver when a meldown or frustration is about to surface. It's helped him considerably to help him lower it!! He now pushes walls push his hands dwn on on his head and try tight bear hugs when a meltdown occurs.
—Guest hayley

"Fun Interactive Play"

I have worked several years doing habilitation for two young men one with autism and another with Down's Syndrome and always approach both them in respectful, but in a fun/casual way. They both respond very positively , ironically, most of time with an indirect approach such as hearing music in the background while I interact with them. A simple family activity that almost any family can do is having a simple "Music Drum Circle". The idea of just sitting in a circle and everyone picking their favorite music can be very beneficial. In this process, you can use a simple musical instruments to keep time to the music. Also, you can combine story time with books that have music tracks. Point being, everyone is relaxed and in the process incredible interactive communication can take place. Down the road, also entertain the idea of "Rhythm Therapies" such as drum, music, dane and horse therapies. Horse & Music Therapies are connected through basic rhythms. "Enjoy & Relax"
—Guest Phil Waigand

My child is autistic

My beautiful son was born oxygen-deprived and later diagnosed with Asperger's syndrome. Two years later, his diagnosis was downgraded to autism. He's the sweetest, most loving little boy; he just prefers to thrive in his own little world. He's 4 years old and we're seeing improvements. Don't give up! Treasure these children and celebrate their every victory!! Much love...
—Wendi

Hanen Program

When our son was diagnosed with autism we wanted to help him as soon as possible and we desperately wanted to communicate with him. Our son's speech therapist recommended the Hanen Program "More Than Words" (for non-verbal children). We enrolled ourselves immediately along with both our son's grandmothers. The course was a life saver for us. It gave us what we needed - practical skills and strategies to use straight away. In particular we found the 1:1 couching sessions at home incredibly valuable. Two and a half years on my son is now verbal and about to start mainstream school, which we are very excited about. We have recently started another Hanen course called "TalkAbility" to help our son with his social and conversation skills. He joins in with us and straight away we have seen an improvement. He now initiates conversation, stays on topic and he is interesting and funny to talk too.
—Guest Robyn

All you need to know

Get "Beginners Guide to the Autism Spectrum Disorders: Essential Information for Parents and Professionals." by Paul G Taylor. Look on Amazon.
—Guest astrolabrador

Don't let other burst your bubble

You are the parents that God gave to your child. Let your instincts quide you in care, therapy, treatment, etc. It took us way to long to get to the healing therapy we needed for our daughter. Listen, read, pray, and then do what your intincts tell you. The doctors do there best but do not have many answers. I post some things we have done on a blog we created... www.asdperspectives.com Maybe it will help someone.
—shakleemama

Home School May Be A Life Saver!

I have two autistic children. My daughter will be sixteen soon and my son is ten. My son was about a year and a half behind in school and basically being "warehoused". I pulled him out two years ago. Daughter also is developmentally delayed (used to be called MR), so she is still behind but nonetheless THRIVING compared to her public school days. My son is now at grade level or beyond and both receive socialization through home school groups, one I run for spec needs homeschoolers...church groups and therapies. They have made great progress in all areas because they feel safe and cope with challenges so much better than when in a public school settting. It's not for everyone, my eldest child goes to public school. But if possible, I so recommend it. :)
—Guest Susan

HELP

Let others help! Always take time for you. You have got to be OK or no one else is. You understand. Always let others help.
—RoseChandler

You Are the Expert on YOUR Child

Regardless of when, how and who diagnoses your child...please remember YOU know your child better than anyone. For every Autism Specialist I have dealt with, I am still mystified that so many of them dismiss the first-hand knowledge and experience of the people who have been with this child since birth. I don't have your PhD or MD; but you don't have 24/7/365 experience on MY child either. If you can find a way to work with the professionals and have them see you are asking questions for a reason, not second-guessing their knowledge...it can make for much better relationships for everyone--particuarly your child. The previous suggestions of breathing, finding support, and learning along the way are also important. This is a marathon...not a sprint. Make sure you have something left to be able to go the distance. One thing I try to do--find something that isn't autism related in your day (even 5 minutes with a trashy novel) to help prevent it from dominating your life.
—Guest Sharon

Put on CEO Attire Before You Hire...

Last week I asked a mom what her biggest challenge was, and instantly she talked about her son being tested for autism in a few days. Having created alliances with special needs family's for over 12 years, I coached her and learned that this label did not agree with what she saw in her toddler. While it was true that he hadn't talked yet, and was very slow to be engaged (we had been in the same music class for over an hour) I saw an articulate and unusually estute little scientist, rather than one with a supposed deficit, and so did mom. I challenged her to develop a strategy before interviewing subcontractors to help raise her child. Then she'd know if their training aligned with her family's mastermind plan. Otherwise she'd soon find herself and her family being subjected to someone elses by default. As a parent how have you chosen to respond?
—Guest Adelaide Zindler

Don't give up

There are so many treatments to consider. I recommend the holistic approach with some modern medicine as a support. The book that helped my son and me the most is "The Impossible Cure" by Amy Lansky. We also use BodyTalk, which is a newer applied kinesiology treatment. We have seen dramatic results. We've been treating our son for 3 years, he's 6, and we've noticed the most improvement with BodyTalk. But we've also implemented gluten free diet, supplements, some chelation and behavioral therapies. Don't give up! There is no one treatment that helps all children the same way. You have to find the key to your child.
—cazziecaz

My Success (Parents of Non-Verbal Kids)

I have 3 kids who were (now all recovered) ranging from Aspergers to severely non-verbal. We developed a method of targeted video modeling that was a major key in their recovery, and it is now available through the Internet. The initial trials have been rather remarkable. There was actually a documentary made on the US testing, I can send anyone the link if they contact me directly. Here is a 2 minute segment from the documentary. http://www.youtube.com/watch?v=Tu20J2Bx08k I wanted to try to find parents who will really use the program, and not just waste it. If your child is having difficultly with language, this appears to work better than anything else. http://www.youtube.com/watch?v=VJUO6FIRaeY http://www.youtube.com/watch?v=-7mGTtCCmoY http://www.youtube.com/watch?v=IXQT2ZEQEN4 (reach me at laurakasbar@gmail.com)
—Guest Laura Kasbar

You Are Not Alone

Everyone needs someone to talk to. Let someone know what you are going through and how you feel. Find someone who is or has been through what you are going through and feeling now who can just listen and be a source of strength. Parents that are juggling the same things you are can offer tips on how they juggle the days routines and may be able to give you different ideas to try that could work for you. But never isolate yourself from the real world, let others in to provide you help and strength. Join a Support Group or start one yourself.
—Guest Michelle Poe

new diagnosis-autism resources

The first thing you need to do is find out as much as you can about your child's condition. Exceptional Parent magazine has an annual national resource guide on disability specific conditions, including autism. You can get one free copy by calling (800)E-PARENT. Also, "Educating Children with Autism" was a national study on all the clinically researched interventions proven effective for autism. You can download it free at www.nap.edu or buy it in book form at www.amazon.com.
—Guest Lauren Agoratus

Tell Your Tips

What's Your Advice for Parents of a Child Newly Diagnosed With Autism?

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