Hi,
I have 3 sons on the autism spectrum and one has uncontrolled seizures. Are you on any lists for autism? Are you connected with any local support groups for autism or seizures? There could be many things available that you don't know about. It could be training to ride public transportation to individuals with small business who are friendly to hiring the disabled part time. It greatly helps to network.
I would look to your state department of disability or rehabilitation. Each state calls it something else. Once you get linked up with them, it varies on what services they will offer depending on your state and on what counselor you get. It helps to get connected with other parents and find out what is possible. Always keep an email trail of what you send to the counselor and what they send to you!! Keep track of phone calls, who you spoke to, and why the call was made. If you find yourself hitting a roadblock with a state agency, contact your state representative or state senator after you contacted the supervisor with an email question about the issue. Give the supervisor a week to get back to you and then if you don't hear something, call the politician. They can move mountains on this stuff and I can't stress it enough. Now they can't get you what the agency doesn't do but they can get you what the agency does regularly do. Lots of families fall through the cracks so you have to stay on top of things.
I would suggest a medic alert or similar type bracelet that identifies your son's disabilities. I would also contact your police departments and see if they have protocol for autism and or seizure. Many departments do. You can tell them about your son and they will put him in the system. Different departments call this by different terms but there is sometimes forms for it. Once you have done that, if they have a call to your home, before they even get there, they pull up your address and find there is a person who may not respond as the average person. This type of program is great for all kinds of disabilities ( hearing loss, dementia, Parkinson's, autism, etc). It is better to have the information in place before an emergency than to have to do it when everyone is stressed out. Also if the police encounter your son like what happened, they pull up his name and find out what could possibly be going on.
Also make sure he ALWAYS carries a wallet. Yeah I know getting your kid to do things is an on going process but hang in there. Every time you go to leave the house, you ask, 'have your wallet?' In his wallet, have a card about IN CASE OF EMERGENCY with information about his seizures and where to call. Just have a short concise few lines about what happens during and after. Keep in mind the most unmedical person could be reading it. You could have a friend read it and ask if what they think it means. Also if he has a cell phone, many carriers have programs to track the phone. I have it set up to let me know when my son gets to or leaves the train station and the same for his place of training/work. Now he has to have his phone on but it is great peace of mind. I can also go to a website with the cell phone company and see where he is. We use Verizon and it is 10 dollars a month. He doesn't have a super all the bells and whistles smart phone either so check it out.
Please feel free to email me if you like. nedra3boysi@sbcglobal.net
In Christ,
Nedra 2 of 5,
Borg Mom Resistance is Futile in finding what works for my kids with God's help
Nick, 28, AS, ADHD, + CAPD, grad student in computer security
Ben, 25, AS + ADHD, grad student in finance and working as financial planner
Matt, 22, very AS, ADHD,+ Complex Partial Seizures of the Temporo- Limbic region with VNS, at nonPareil Institute- non-profit for spectrum people, making phone apps and computer games and a part time instructor
God knew there would be children with Autism - and in honor of them He made the planets in the solar system spin round and round, round and round.....
Author, unknown
__._,_.___
| Reply via web post | Reply to sender | Reply to group | Start a New Topic | Messages in this topic (5) |
Just a friendly reminder: Please remember to sign your post and remember to clean up messages when you reply to them. This is especially important if you are on digest. This not only helps out the list owner but, it makes messages much easier to read when they arrive in our inboxes.
.
__,_._,___
No comments:
Post a Comment