Hi,
It is very frustrating and frightening. Sadly the stats for families with a child with terminal cancer are better than families with autism. It is a fight. My youngest son, the one who has seizures, is at a place that was started by 2 fathers who have sons with autism, not Asperger's. The idea is to have a long term non-profit company for spectrum people to make phone apps, computer games, etc. It has grown from 6 young adults at the one man's home that he trained in the evening in his kitchen to over 150, a huge waiting list, and other cities asking for branches. They are on a branch campus of a major university. My son started when they went from 6 to 20 and went to the campus. So yes, there are parents who are overwhelmed and shutdown. But there are also some who are trying to come up with a plan. The trick is connecting with them. I know it isn't easy but they are out there.
Some things I would check out are-
Homeschool groups- homeschoolers are involved parents generally. Look at Yahoo or Facebook for any homeschool groups that are in your area and see if you can join. See if they have any special needs kids. Those are the parents you want to network with. Some may not have 'official' diagnosis. Say you are looking to connect with parents for options for teens and young adults and 'gathering information to consider homeschooling'. Many groups are for homeschoolers so to communicate with those parents, you can say you just want to know what the options are for homeschoolers. It is a very common situation.
Contact any private vendors that you used- speech path, psychologist, etc. Contact them and ask if they know of any parents individuals or groups who are working for teens or young adults. I often think our lives are like a version of the underground railroad. You sit in a waiting room and get chatting with another parent and ask 'so where have you been, who have you seen?'
Check with the school and see if they have an IQ that would get him services. Many standardized tests have a means to factor IQ so you might have an in that way. The tests could have been on days he was off and not scored as high. Have his meds changed since the testing was done? Could his meds alter the results to get what you want?
Any agencies for mental delay or developmental delay. There is one that helped us with the application for SSI for my son. They are not directly the state but they offer services to all kinds of groups.
Also contact your state senator and or state rep and tell them how your son is falling through the cracks. It doesn't hurt to ask for help. They have staff that this is all they do, help people through the system.
I do know people who didn't have the means for a service dog but had fund raisers to get the dog. But be careful because I have heard that some agencies take the dog back for minor issues like the dog got fleas ( first case, not long term neglect) and they lost all that money. Others on the list could direct you to a good agency.
It is very frustrating and frightening. Sadly the stats for families with a child with terminal cancer are better than families with autism. It is a fight. My youngest son, the one who has seizures, is at a place that was started by 2 fathers who have sons with autism, not Asperger's. The idea is to have a long term non-profit company for spectrum people to make phone apps, computer games, etc. It has grown from 6 young adults at the one man's home that he trained in the evening in his kitchen to over 150, a huge waiting list, and other cities asking for branches. They are on a branch campus of a major university. My son started when they went from 6 to 20 and went to the campus. So yes, there are parents who are overwhelmed and shutdown. But there are also some who are trying to come up with a plan. The trick is connecting with them. I know it isn't easy but they are out there.
Some things I would check out are-
Homeschool groups- homeschoolers are involved parents generally. Look at Yahoo or Facebook for any homeschool groups that are in your area and see if you can join. See if they have any special needs kids. Those are the parents you want to network with. Some may not have 'official' diagnosis. Say you are looking to connect with parents for options for teens and young adults and 'gathering information to consider homeschooling'. Many groups are for homeschoolers so to communicate with those parents, you can say you just want to know what the options are for homeschoolers. It is a very common situation.
Contact any private vendors that you used- speech path, psychologist, etc. Contact them and ask if they know of any parents individuals or groups who are working for teens or young adults. I often think our lives are like a version of the underground railroad. You sit in a waiting room and get chatting with another parent and ask 'so where have you been, who have you seen?'
Check with the school and see if they have an IQ that would get him services. Many standardized tests have a means to factor IQ so you might have an in that way. The tests could have been on days he was off and not scored as high. Have his meds changed since the testing was done? Could his meds alter the results to get what you want?
Any agencies for mental delay or developmental delay. There is one that helped us with the application for SSI for my son. They are not directly the state but they offer services to all kinds of groups.
Also contact your state senator and or state rep and tell them how your son is falling through the cracks. It doesn't hurt to ask for help. They have staff that this is all they do, help people through the system.
I do know people who didn't have the means for a service dog but had fund raisers to get the dog. But be careful because I have heard that some agencies take the dog back for minor issues like the dog got fleas ( first case, not long term neglect) and they lost all that money. Others on the list could direct you to a good agency.
I know it isn't easy. I hope one of these ideas leads you to something.
Nedra
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