Showing posts with label NAMI. Show all posts
Showing posts with label NAMI. Show all posts

Monday, August 11, 2014

Things you should understand about the education system.

 Every state and more so every city has their own way of running education and handling IEPs. What you could do for your child in support and educational experience is literally a great spectrum of its own. It's important to know that, if you have a problem, you can't just bring federal law down on their heads. You have to go through proper channels and that means the State level. How that state handles or enforces federal law is entirely up to them and yes, that's mostly considered legal and accepted by the "higher authorities". So if you are in Florida and have an IEP complaint to make, you have to make it to the State of Florida Department of Education. You don't get to just jump to the White House. Some places may cave to the threat of a complaint, but that will be the exception rather than rule. Because of the process you will have to go through,, many of them will be pretty calm about the issue.

Florida is a state of nightmare tales of abuse against children in autism (or other disabilities) and you can find tons of news media all over the internet. States like, Wisconsin are generally more successful. If you want to have some fun take a trip to Greatschools.org and see how schools in your burg measure up to others around the country. Check anywhere you want. You'll be amazed. For even more comparison, compare that to the 2009 NAMI grading of the states. You can pretty much see how things will be for your child in school on the comparisons. But influences go deeper than that. What kind of things go into affecting how your state and city run their system?

Politics: Where do you think common core came from? Politicians. It's all done with Ordinances, Acts, and other nonsensical business you may not even get to vote on.

City Size: Are you in a major city or small town? Small and isolated towns can be the most differential in school from the rest of the state. Even that may be small differences, but I'm sure I have readers with stories.

Local Beliefs/Traditions: What are of the country are you in? Are you in the Bible belt? Maybe you live in Tornado alley or way up north? Beliefs and traditions of the place you live in will have a direct impact on education and how it's run. It's not supposed to, but it does. In Utah, the Mormon Religion is majority of the population. That means most of the teachers are Mormon too. Their distinct beliefs carry over into the class room. I know this because I lived in Utah for my 9th grade year after being in Nebraska. Totally different worlds.

What they personally think of YOU as a parent: I've had one school commend me, one judge me as a parent (and they all do but I mean harshly) and one label be as a difficult parent, all for doing the exact same thing. It's common knowledge that you can't get along with everyone. But we are supposed to be professional too, right? Well. Definitions vary. One thing that is for sure, if the teacher really doesn't like you, it will affect his or her point of view toward your child. The common thought on parents of  special needs students is that we are a colossal pain in the ass. That stigma (and not all teachers are like this) can make it hard to establish a good parent/teacher rapport.

And all of that is just in Elementary school.

The reason I post this is because, as I look over stories on the internet; I see people lending advice about federal IEP Law as if it's exactly the same in ever state, county, and city. Yes, I know it's written the same, but getting it enforced is a totally different universe. And situations vary so that the law may not be broken by some technicality. It's always best advice to consult a local attorney. Consultations are usually free.

If you are a parent of a special needs student with an IEP, you owe it to yourself to find out exactly what your state's procedures are in handling complaints and education in general. How do they enforce their policies? Too often we wind up surprised and that's never a good thing to be.  But what do you do if you are in a bad situation? In my next installment, I'll tell you.


Wednesday, December 7, 2011

Understanding Advocates


First, another looks at Webster's definition: A person who writes or speaks about a cause.

That's me. But there are other kinds of advocates out there, both good and bad. On the internet, the differences get blurred. Hopefully, this article will help define the lines. So what kinds of advocacy are there? Here's a list:

Individual: for the rights of a single person

Self: for the rights of yourself

System/Political: to promote changes in a broader system or promote a broader cause that affects a greater number of people

Legal: legal rights of various degrees (this can branch to the others easily, but issues will require someone with legal training)

Legislative: for changing laws which can branch to system political at times.


So, you've got problems. You're child, who needs and IEP is having trouble in school and it seems the school will not listen to you. You may need an advocate. Like many people nowadays, you turn to the internet and you find someone who says he can help. He says he can force the school system to play straight. Sounds great. Then he asks for money for airfare to come and visit your child's school. He plays on your desperation and you give in. You send the money and he never shows. Either that, or he actually contacts the school and ticks them off so badly they'll never work with you. So how do you know if you have found an advocate who can help you?

This is something I've actually helped people do several times over. My form of advocacy is in education. I believe that the more we learn, the better off we are. I advocate for people to learn about conditions to help erase stigma and abuse. So I give lots of advice for people looking for help.

What to watch out for on the internet with advocates:

Asking for money. Depending on the kind of advocate you are looking for, you shouldn't be looking to connect with them on the internet. Any advocate who's asking for your money, you need to look at closely. As in my last blog post, ask questions. Often they'll make wild claims of what they can do and what degrees they have. If they can't be verified, run. If you ask and they get belligerent, run. Verify all information. Let me write that again, verify ALL information before giving any money to anyone for their "advocacy".


Now let me tell you what an advocate is not and shouldn't be. An advocate is not some special authority who goes around demanding answers of individuals or other advocates for every detail of their doings and lives. They are here to help people, not police them. When Nick Dubin, a well known advocate for autism, was arrested; I was contacted and asked why I wasn't demanding answers and writing blogs about Nick Dubin. Simple, because that's not what an advocate does. I'm not trying to write the National Enquirer of Autism here (some people are and do). I'm not writing the gossip column of autism either. That's not what an advocate does. That's not an advocate, period. Now, there are plenty of advocate blogs out there and some of them are indeed doing just that, some aren't. You have to judge for yourself, what kind of information you are looking for. But I challenge you, look up definitions for yourself of "advocate" and see how many times you see "vigilante" or "gossip columnist" in the description. You won't.

Now, what's the best way for you to find help for your child? Every place and state has lay advocates of some kind somewhere. You just have to know where to look for them. Here are some updated ideas:

-Look in your phone book or online for your states Ombudsman's offices. Call them, they can often give you solid advice of where to go if they can't help you themselves.

-Contact your state's chapter of the Autism Society. You can google it by "state name" Autism society, try it. They often have lots of links with people and groups you can call.

-Google for your state and a chapter of NAMI (National Alliance for Mental Illness) and contact them.

-Contact your states or county school board and request a hearing for your child. Most times, this costs nothing and it's part of your rights for your child.

-you cold google School Advocate and your area, town, county, or state and see what you get, but remember the above.

Just a few ideas. Do you want to be an advocate? In my next writing, I'll tell you the do's and don'ts from personal experience and more.

Friday, March 26, 2010

Getting help with autism

You just got the news. You or a loved one has been diagnosed with autism. Your blood runs cold and you sit in shock. What now? What’s autism? What do I do? Take heart, you aren’t alone.

The CDC’s newest statistics show that one in 110 children have autism. Autism has proven highly hereditary in it’s forms that aren’t thought to be vaccine triggered. The newest diagnostic manual (DSM) followed by doctors states that all the forms of autism to include Asperger’s are accepted as simply “autism”. That means there is help out there, for all levels and forms. That’s not to say that getting proper support is easy and there are still insurance issues across the country, but you mustn’t lose hope.

First of all, you need to know where you can find resources, advice, and help. I’m going to tell you how to do that right now.

The first resource that I am giving you is the Autism Society of America. They have a chapter in every state and are the most in depth source of all resources you can find. To find them, go to your browser and put in “Autism society of *blank*”. Blank is where to put the name of your state. It is possible to find societies in Canada and the UK as well. Just put your province or state location in the place of that word, ‘blank’.

On most of their pages you will find a link that says RESOURCES. Click on that. You will find a list of organizations and offices in your state with phone numbers and locations. Pick up your phone and start calling them. Most of these resources can give you a heads up on what doctors are the best to go to for autism and what schools have the best resources, depending on what is reported to them. You may also find other families who have dealt with autism longer than you and can share advice on what has worked for them. Some state health departments even have an autism representative who can work with you. Can’t hurt to call and ask!

The second resource I have for you is NAMI (National Alliance on Mental Illness). NAMI is pretty much US based, but they have excellent information and links to resources for pretty much every state. To find their chapter for your state, go to your browser and type in NAMI and the name of your state. When I go to the Wisconsin site that lists as the National Alliance for the Mentally Ill, I click on services and find a map with all the counties of Wisconsin. I click on my county and get a long list of mental health services for my area. The rest would be up to me, to pick up my phone and start calling. Some services may be listed with both organizations.

The third resource is the advocate. If you really feel lost seek out advocates in your area or even right here. We volunteer our time to help you find the information you need and many of us live with the exact same or similar conditions and don’t mind lending advice or letting you just vent to someone.

So know that you are not alone. There are thousands of people and families dealing with autism and vast other mental illnesses and disorders. There are lots of websites, forums and groups with others just like you, right out there. Don’t lose hope.