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Old 08-08-2017, 10:12 PM   #11
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Re: Looking for autism resources, its getting scary

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I know this isn't related to school issues, but have you tried changing his diet? Trying supplements? I have a cousin with autism similar to that, just without the self-harm behavior. His parents saw massive improvement (relative. Still non-verbal, social issues, etc) once they figured out diet specifics that worked well for him & did a bunch of homeopathic stuff. I just don't know exactly what they did, but it's worth looking into. Pretty sure they don't even use pharmaceutical medicines either.


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From ages 3-7 we tried a lot of diet combos and supplements. We did hyperbaric treatments for 3 months. We had him checked over physically by specialists and a homeopath. Thanks for the idea but it didn't help. We avoided medicine for 10 years. Definitely not the answer either


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Old 08-20-2017, 11:31 PM   #12
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Re: Looking for autism resources, its getting scary

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I actually got my son on the dd list with our dhhs when he was 3. We have to get social security before we can apply for a waiver???? That's what I was told. I have an interview with social security next week. The thing is there is still almost nowhere in Nebraska for him to go and I doubt other states will accept our Medicaid. It pays so low on everything else. It would pay for him to go to a host home but I doubt they could keep him.

It is crazy. I was told to "try to survive until he's 19". Someone else with the state recommended we move to Texas since there are services there

We have what's called PTI that are advocates and I've been in touch with them. I also recently got connected with a mom who has been through this. She is coming over Saturday. Next Monday we should find out when we get to meet with the school.

And Medicaid pays for ABA but there are no therapists around here willing to accept it because it's so crappy. It would help with meds and appointments.


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This sounds thoroughly insane. It took 6 months from the time of application for my son to be accepted into the DDSO and another 4 months for medicaid waiver to come through. Makes no sense that you have to have what, SSI before waiver? Our family doesn't qualify for SSI since it's based on income. Two things have nothing to do with each other. Can you call the DDSO (whatever its called) again? Are you sure you can't move? This is so important and the state is not stepping up. While it's true we have a deep bench of services here in Buffalo, NY, you should at least get something and you should be on that waiting list!! I'm hopping mad for you. So sorry. I have to say this just shows what a mess this country is, that my son can be so well cared for and your son is getting just about no help at all.
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Old 09-02-2017, 09:28 PM   #13
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Re: Looking for autism resources, its getting scary

I think you or his father need to move. You are losing years in getting him the most help possible. As much as you care about your patients you need to put your son way ahead of anyone else. What he learns now will impact his quality of life as an adult. I would investigate were you can get the best education and services for him. Both for now and for when he is an adult. An adult such as your son might require 2 support staff of his own per shift when he lives in the community. Start planning for that now. Have you considered a place like Kennedy kreiger in Baltimore to address his self injurious behavior? They can work wonders in this area.
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