Where to go!?

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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Joe.Sturm
Posts: 3
Joined: Tue Sep 15, 2015 5:30 pm

Where to go!?

Postby Joe.Sturm » Tue Sep 15, 2015 6:10 pm

Hi everybody. This is my first post on this website.

About seven months ago my wife, son, and I moved to Beijing. My wife and I are teaching English, and our now 2.5 year old son goes to the same preschool/ kindergarten that we teach at. To make this long story short, Dexter, our son, began showing signs of autism. So we took him to one of the very few psychologists that actually recognizes autism in Beijing. She diagnosed him with autism.

My wife and I are well past the "devastated" phase, and now we are trying to do as much research as we can. We have decided it is best for us to move back to America, but the million dollar question I have right now is "where?"

Our families live in Nevada and Arizona. I have done research on both states, and just by the initial appearance of the abundance of locations for help, services, support groups, schools, etc, it seems that Arizona would make the better choice. On the other hand, my sister-in-law and niece, who is of relative age to Dexter, live in Nevada. My Niece, Ila, loves Dexter and my wife and I feel that it may really benefit him to be able to interact with her every day (we would all be living together), since the two key areas where autism has affected my son are his speech and his ability to play with other children. However, for me, it just seems that the Phoenix community is more established than the services and help that Nevada has to offer.

Some additional information that is probably important in you all helping us to decide is that when we get back to the US, we are going to need to apply for state-provided health insurance. We simply won't be able to afford to buy private insurance, and we definitely won't be able to afford to pay out of pocket for the professional help we'll be seeking.

So... What should we do? I have read entire state-by-state PDF reports. I have gone to as many websites regarding the states of Arizona and Nevada as I could possible bear. I feel like my head is constantly about to explode with all the information I have to sort through as well as all the worries I have for my son. Any help you guys can give us would be greatly appreciated.

Thanks,
Joe

Joe.Sturm
Posts: 3
Joined: Tue Sep 15, 2015 5:30 pm

Re: Where to go!?

Postby Joe.Sturm » Wed Sep 16, 2015 5:13 pm

Sorry, since I'm new to this forum it's not letting me post personal responses. So I'll post one here...

We are not entirely sure if he has experienced regression. Looking back, he was saying a few words before we moved out here. However, not nearly the amount that was normal for his age at the time, and he would only say the words if prompted by my wife or myself. When we stopped saying them, he stopped. But he has always been way behind in language skills... Also, looking back, it seems he showed some signs earlier on. However, it was never on our minds because of how interactive he was, and still is, towards my wife and I, and also people he knows very well. He absolutely loves anybody that he gets to know. He makes eye contact. He smiles. He laughs. He loves to play with us. The problem comes in two key areas for Dexter.

1. Communication: He doesn't have very much communication skills. Sometimes he will reach for things he wants. He will hand things to us that he wants us to open or play with with him. But, for the most part, he doesn't have most communication skills and he lacks most language skills that is very typical for a toddler his age... For example, saying "hi" and "bye," or at least waving.

2. Interaction with others: He plays with us and people he knows very well, like his teachers, but when it comes to his other classmates, you never see Dexter playing with them. If someone he doesn't know all that well gets close to kiss him, he will push their face away. He will walk on by someone who is trying to talk to him. He does know his name and usually always reacts when he hears his name called. But he will usually just look at the person and continue doing his thing.

His logic and cognitive skills seem to be present at times. We work at a Montessori school, so the classrooms are full of sensory learning toys and games that require a complete thought to be played with or successfully put together. We took some Montessori cylinders home and Dexter picked up on it within seconds, and now he flies right through them even if you rearrange them in a different order. But we always have to show him how to play with something one or two times, otherwise he will just play with it like it's a car and roll it back and forth. He loves to play with doors, opening and closing them. He loves music and even makes babble sounds to go along with the songs in his favorite show, Yo Gabba Gabba.

Since autism services are nonexistent here, we have to rely on other ways to help him. Even though my wife and I are ESL teachers, we are completely stumped when it comes to teaching our son some kind of language skills. So we introduced to him a program called "Gemiini." And it seems like it might actually be working. Ever since he began watching it, he is making tons of new sounds other than "ga ga gee gee ga ga ga." And he seems to be starting to relate words with actual objects for the first time. The other day he handed me an apple and said "guaguo," (when he says this, it almost sounds like he is saying apple) which he began saying whenever the "apple" topic came up during the Gemiini program.

So the potential for progress definitely appears, in my opinion, to be present. But I'm not an expert. You all probably know much more than I do... The doctor that diagnosed Dexter with autism, in my opinion, wasn't even an expert. We only took him to her because she's the only doctor in Beijing that has actually begun to recognize autism. But as we were explaining Dexter to her, she stated that he is like a robot, he will probably not be able to live a normal adult life because he doesn't know what love is, and he doesn't see my wife or I as "mommy and daddy," but only as people that can get him what he wants. However, I can give tons of example of why none of that is true concerning my son or even most autistic children that I have met throughout my life... Huh, living in the filthiest country in the world that has absolutely no decent sense of what good medical or psychological care is is no place to live if your child has autism... Just wish we would have recognized the signs before we came here.

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Where to go!?

Postby Winnie » Thu Sep 17, 2015 12:24 pm

Joe.Sturm wrote:Our families live in Nevada and Arizona. I have done research on both states, and just by the initial appearance of the abundance of locations for help, services, support groups, schools, etc, it seems that Arizona would make the better choice. On the other hand, my sister-in-law and niece, who is of relative age to Dexter, live in Nevada. My Niece, Ila, loves Dexter and my wife and I feel that it may really benefit him to be able to interact with her every day (we would all be living together), since the two key areas where autism has affected my son are his speech and his ability to play with other children. However, for me, it just seems that the Phoenix community is more established than the services and help that Nevada has to offer.

Some additional information that is probably important in you all helping us to decide is that when we get back to the US, we are going to need to apply for state-provided health insurance. We simply won't be able to afford to buy private insurance, and we definitely won't be able to afford to pay out of pocket for the professional help we'll be seeking.

Hi Joe – welcome to the forum!

I live in a state that was (and is) behind the resource curve of other states. I don’t know anything about the resources or services provided by either Arizona or Nevada, but my recommendation would be to move to the location that offers the most/best resources and schools as well as the most comprehensive state-provided insurance coverage for children. As wonderful as it would be for him to interact with your niece daily, you may need the resources more at the moment. A larger metropolitan city will likely offer more service options for your son as well as more training options for you.

It sounds as if your son has some great skills and has a lot of fortunate positives – his parents are teachers! I have some other thoughts on your second post and will respond later when I get a minute, but I just wanted you to know that your posts have been read.
Winnie
"Make it a powerful memory, the happiest you can remember."

Joe.Sturm
Posts: 3
Joined: Tue Sep 15, 2015 5:30 pm

Re: Where to go!?

Postby Joe.Sturm » Sun Sep 20, 2015 10:40 pm

Awesome. Thank you. Looking forward to your response :)

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Where to go!?

Postby Winnie » Wed Sep 30, 2015 1:22 am

Joe.Sturm wrote:Awesome. Thank you. Looking forward to your response :)

Hi Joe -- sorry I'm just now getting back to the thread. I hope you are still out there!

Joe.Sturm wrote:Since autism services are nonexistent here, we have to rely on other ways to help him. Even though my wife and I are ESL teachers, we are completely stumped when it comes to teaching our son some kind of language skills.

How fortunate that you are both teachers – and it is probably a plus that you are ESL teachers – you will be teaching English (I assume), though as a first (instead of second) language. Sometimes ESL materials are even used when teaching children with autism.

As far as the strategies (and differences) involved with teaching language and communication to your son – you can participate in training to serve as therapists/teachers to your son. Many parents who live in areas (like my state) which lack abundant resources train themselves – and regardless of what services are available through Early Intervention or the public schools, having parents who are able to teach and reinforce skills outside therapy and/or classrooms, and take advantage of the teaching opportunities in his natural environment, is a huge factor involved in progress and optimal outcome.

I would recommend that you look into a language-based ABA program like Verbal Behavior (James Partington and/or Mark Sundberg). We had a lot of success with VB in the home program we pulled together, and I attended trainings at Partington’s facility in CA and some in other states (closer to home and a few in my own) where workshops were offered at conferences by Sundberg, Partington, or other professional familiar with VB.

You will need a thorough assessment of what he is able to do and what he has yet to learn in order to know where to begin and what to build upon. We used the ABLLS (Assessment of Basic Language and Learning Skills) by Partington – this served as a roadmap of sorts and was a very helpful way to track progress and choose teaching targets. Since that time, the VB-MAPP (Verbal Behavior Milestones Assessment and Placement Program) by Sundberg has been published, which some people use instead.

Joe.Sturm wrote:So the potential for progress definitely appears, in my opinion, to be present. But I'm not an expert.

Yes it does -- your son has some wonderful skills! You have great observations and will no doubt be an expert very soon.
You might be interested in scrolling through the following forum thread – it is a compilation of the research on autism recovery, diagnostic stability (loss of diagnosis), and optimal outcome:

http://www.autismweb.com/forum/viewtopic.php?f=6&t=29107

Joe.Sturm wrote:The doctor that diagnosed Dexter with autism, in my opinion, wasn't even an expert. We only took him to her because she's the only doctor in Beijing that has actually begun to recognize autism. But as we were explaining Dexter to her, she stated that he is like a robot, he will probably not be able to live a normal adult life because he doesn't know what love is, and he doesn't see my wife or I as "mommy and daddy," but only as people that can get him what he wants. However, I can give tons of example of why none of that is true concerning my son or even most autistic children that I have met throughout my life...

Oh good grief. She is archaic. What ignorance (and people wonder why autism prevalence is lower in countries like China). The expert who diagnosed my son gave us a pretty gloomy prognosis, but nothing that offensive! That was a long time ago -- and she was wrong -- we are blessed that he is in college now. No one knows or should limit your child’s potential.

Joe.Sturm wrote:Huh, living in the filthiest country in the world that has absolutely no decent sense of what good medical or psychological care is is no place to live if your child has autism... Just wish we would have recognized the signs before we came here.

^Why I roll my eyes when some parents, practitioners, and salespeople insist that Ancient Chinese Medicine is the panacea of progress for children with autism. On that note, I would advise you to be wary of the abundant treatment quackery promoted on the internet – you will no doubt trip across tons of fantastic claims, kooky beliefs, slick marketing, and lucrative quackery during your travels researching autism on the WWW.

Hope you come home soon! Let us know how it is going – all the best to you and your family.
Winnie
"Make it a powerful memory, the happiest you can remember."


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