And yet we are blessed

This is a really tough blog to write. I'm going to explain something I haven't yet because of several reasons. As I explain this, though, I want you to understand how blessed we are because of the assistance we have had and the people who are working with my son now. Yes, we are blessed in spite of the situation.

I used to be able to order and give out free stuff in my Galaxy Zento biz. I can't now. I've told people that we are bent over a barrel and there have been some medical issues with myself and my dear wife, but I haven't explained this part of the story. Why? Because I'm not looking to bitch or sob. But I have contained this long enough that I really can't just stay shut down over it any more. I need to talk. There are names I still cannot say, so forgive that and just bear with me.

As many of you know I have a super 13 year old son with autism. He's a great kid and we are so proud of him every day. He's gone through so much. Right now he's in a "private school" that specializes in his educational needs. The reason our family has no money for any extras (and barely enough for some essentials) is that we are paying 298 dollars a month to put him through school.

It could be worse, but a wonderful, wonderful company fronted half the years tuition. So why don't we have him in public school? This is the hard part. The part where I can't name names. But it's like this; about two years ago, my son had to spend a few months in a hospital for the heavy stress related injuries caused by the school system. Without going into a ton of details, it's as simple as that.

I've been asked why I can't afford to buy copies of my own game or pay for pro artists etc, well that's why. And frankly, my son is just a little more important than how they think I should try to start my business. But that's just a side frustration. I digress.

Sue them? No. Believe it or not, that would actually hurt quite a few people. I spoke to a very good attorney who won a case for another family against the same system over 5 years ago. That system owes said family over a hundred grand and has yet to pay a single penny. Not only that, but the system will retaliate and drag my son's current school under a microscope to "see if he's getting proper education there". That would hurt every student there that this wonderful school has helped. So, the way we are doing this is the best way we possibly can.

We live by circulating credit cards, not having cable, and keeping it at the bare essentials. And it's totally worth it. My son has been helped so very much, that I love that place. I would rather be house poor than see them hurt him. Because they told me, to my face, that middle school here would not follow his IEP and they had no fear in telling me that because there is just no damned enforcement here. And my family is not the only special needs family they have done this with. They scare families away so they don't have to deal with them.

So, for you IEP warriors out there. PLEASE don't ask who they are. I won't tell you. If you find out, please don't contact them, you will hurt us and countless other families. I just needed to talk it out. I know many of you will understand.

What saddens me is how much some people don't understand (like the elitists of Kickstarter and board games who ran me off). Finding out only that I'm disabled was enough for them to say I was full of excuses and to go away. God only knows what they'd say about my son. Again, side frustration. Sorry.

But we never give up. I fight to show my son that it's always worth it to keep going. I'm so proud of his accomplishments and overcoming. And before anyone asks. We never told him to blame his school system even though he's fearful of certain people if he sees them in public. He sees his time at the hospital as something he needed to help aim in the right direction and learn important life skills. He does not consider himself a victim, rather a growing boy with his own difficulties. Now we just have to figure out what we are doing about High School once we have him caught up, because if we can't move, he will be back in that system again. Not sure what we'll do about that.

When all else fails between school and parents

They're just not listening to you. You've begged, pleaded, and tried to explain your child's situation and the cooperation just isn't there. With your child's IEP there is supposed to be a sheet sent home every day to tell you about behavior (for the doctors and therapists) and homework (so you can be an assisting parent with it and make sure it gets somewhat done). But, even if they say they will, it just doesn't happen.

The excuses are mountain high and they may say things that are pretty disturbing for a parents ears. They'll even blame each other.

"I gave it to Mrs. X and I don't know why she didn't do it."
"I can't get any of the teachers on board. I don't know why." (from a special ed teacher)

Or they'll blame the child (who has a IEP). "Joey is very manipulative and only acting out to avoid doing any school work."

Now, past the disappointing comments there are reasons that schools struggle with IEPs. Overcrowded classrooms come to mind. The implementation of Common Core doesn't make anything easier. Don't even get me started on what Common Core does for our special needs students. Just don't.

So what do you do when it gets to the point that they have made up their mind about your child and just WON'T cooperate with you? There are several steps you should take.

1: Seek out an advocate and get their input. Are you really being that unreasonable in what you seek for your child? It's possible to get help to talk to the local school system. There are advocates who may be willing to come and sit in on an IEP meeting to hash out the details of what's needed for your child. Be sure to have a working list of your concerns all written down before you go in. Have a solid game plan and be courteous.

If you have a knack for screaming at teachers, your problems will worsen. They will block you out mentally and disengage. It will hurt your child's chances of a fair education. It should always be from the ground point that you are trying to be helpful and active in your child's education.

How do you find an advocate? Well, when it comes to autism, you can contact your state Autism Society and ask about leads to people who can help you. Your Health and Human Services office may know someone too. I also suggest the website for Parents Helping Parents where they have a database of advocates and attorneys who may help you. You can also look up your local "community support team" for mental health and ask them. Sometimes, they will come to an IEP meeting after assessing your child. Seek out parent support groups in your area and ask them.

But, you've done that and STILL no dice. For that matter they won't listen to the professional who sits right next to you and tries to teach them about your child just like you tried to do. They believe what they believe and they are doing to do what they are going to do and that's that. Only now they are more dismissive than ever. It's time to file for Due Process. Hopefully, up to this point, you've been keeping copies of everything and anything that proves what you have to say. Unprofessional emails, blank behavior forms, report cards, and reports from Dr.s and therapists, because you will need evidence.

TIP: When collecting evidence on anything you may require for court, DO NOT TELL THE PERSONS YOU ARE COLLECTING AGAINST. You will send them into "cover ass mode" and things will get worse. You will lose evidence while things stay pretty much the same.

But also know this.... filing Due Process will make enemies for sure. It's not supposed to, but it does. Animosity will happen. So, just know that once this process is done, it may be harder to negotiate on the next year than before.

So, you contact your State Department of Education and let them know you wish to file for Due Process. This should not cost you anything, unless of course you've retained an attorney. Advocates are usually willing to assist with this process and walk you through it. This will trigger a series of events. The school will be requires to offer a meeting to work out the issues and settle them prior to a hearing. Go to the hearing and have someone with you (IE: advocate). This is where you and the advocate get into the dirt details of what you expect to correct the situation. Most cases are generally solved at this meeting, but not all. If you and the school cannot come to an agreement that will take you to the Due Process hearing and you may have to do some traveling for that. In my state, I would have to go to Baton Rouge.

TIP: Retaliation is illegal in any form and may be reported to the State Department before or even after the hearing. They're already mad at you, don't be afraid to report unfair or discriminatory behavior.

Alas, you get some things worked out, but they still act nasty towards you and it's still a migraine headache to get through the year. This is where harsh reality really comes into play. You still have options, and none of them are fun.

1: Tough it out. Just do the best you can and forego talking to the teachers. If you are on your last year with a given school, this may be the best play you have. Hopefully new faces and a new start will help you. Just be as nice as you can with those new people to abolish negative news they may already have about you.

2: Move to another school district. This is more common than you might like to believe. People have been known to move across state lines for autism assistance in any form because their state just didn't have it. Same goes for schools. Yes, you might have to give up a job or get a transfer if possible. You may give up close by family support. It will hurt. It definitely did for me when I left my hometown for better support for my son. But it's possible that you may have to uproot and move.

3: Start a movement to make changes in your school system. If there are enough parents who agree with you and are having the same trend of problems, this could be an answer. It will take tons of work and you are trying to teach people who may believe they have nothing to learn from you. You will have to be stronger than you ever thought possible. But it has been done! With parents, advocates, and an attorney or two, you could really make some waves in how things are done in your district.

4: File another Due Process. New violations of your child's IEP or new failings of it qualify for a new complaint! But boy will they HATE you. It's a simple reality. No one likes complaints made about them. You wouldn't either (even though you are within your rights, just be ready for the fact).

5: Go to a private school. It may even be possible to get it paid for by the school system (but that WILL require a filing and court orders to make that happen). It may also put your proposed school on the stand to be inspected and cross examined. They aren't going to pay for a school just because YOU approve of it. THEY have to. Your new school may not appreciate that. You will likely have to foot the bill and it won't be cheap. But if you can afford it, do it. Many do and they actually can't afford it.

Also know that you are not alone. School systems are hurting everywhere with the implementation of common core and you can google to get thousands of complaints. There are also plenty of schools that are just NOT equipped for what your child needs. So it's not that they WON'T do it, rather they CAN'T. On top of that, they don't have the money for your child's private school any more than you do.

And that's basically the jist of what you can do about a bad school situation on IEPs. With the school year about to kick in, what do you want to know about?

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.

Back to School for 2011

So far, I think I have been blessed in the schools that my son has attended. I have consistently found understanding faculty who are at least halfway knowledgeable on Asperger's and autism. I'm sure there will be points in getting to know my son, but we have always been able to deal with that.

This is an important time. For many of us, school starts sometime in the next month. It's time to be thinking about how to be active parents in our children's school lives. I have a few tips that you may find helpful.

1: Make sure IEP's are up to date and check with the school on it a new meeting is needed. Sometimes they don't need one or have a time scheduled based on the last time you had a meeting. Double check on it. Have information from the last IEP ready if you kept it from last year. If you didn't keep it, you should have. Make that a new habit. Keep a file folder for your child's education information.

2: Meet the new teacher and see the new classroom. Let the new teacher know that you are readily available for any questions or needs regarding your child. Exchange emails, most teachers have them now. If your child will be spending time with a special education teacher of any kind, meet him/her too.

3: Get needed school supplies. That's a no-brainer, but some of our students need special supplies. Those are better found sooner than later.

4: Being an active parent means that you are readily available for anything. It means that you are involved and open in communications with the school staff. It means you ask questions and want to know how you can help and where. You don't have to join the PTA or volunteer all over, just be involved where your child is concerned. Be ready to help with behavior issues or questions that help staff get to know your child.

5: Know how to communicate. Asking what you can do to help is way better than demands of the staff to "do their jobs". Demands have their place and are best used when all other approach has been exhausted. Don't start out the school year with demands or veiled legal threats. Be pleasant and polite instead. It will get you much further faster.

Things that staff need to know:

1: Triggers: What affects your child and how it affects them. Will a fire alarm incite hysterics? If so, they need to know this ahead of time. Do they have a problem with being touched? Let the faculty know. Let them know the risks involved too. If your child is high risk for self injury, for example, schools need to know. They especially need to know what causes those reactions. They can't cover everything, but knowledge is power.

2: Medications: They especially need to know if there has been a change to meds and what to watch out for. If there are any concerns with a new medication that could have any affect on the classroom, make sure you communicate it.

3: Quirks and stims: These can be some of the most eyebrow lifting moments in a classroom. What the heck is Joe doing and why? Quirks and stims are nearly limitless in what they can involve. They can be surprising and sometimes disturbing. Understanding them is a great step toward helping a child in a classroom environment. Also, forewarned is truly forearmed.

Remember, you don't want them to re-create the education system. You just want to help them work with your child. You just want to be a part of his or her educational team.

If you are at a school that won't do this, that is a different story.

School cuts endanger education

I attended the last school board meeting at South high after I discovered about some proposed budget cuts. Well, I don't know if proposed is the best word since I've already been told that certain employees have already been told they "basically" don't have a job next year. Which jobs am I talking about? Classroom aides.

I took the podium and said my piece about why they mustn't cut this area of the budget and I got an nice form letter in the mail for it. It says they care.

Well, first and foremost I do expect them to care, but caring isn't enough to correct these problems. And it's not correcting these problems. I heard them say that a lot at the meeting too. I'm glad they care and to be fair they don't have an easy job.

So, why shouldn't they cut another classroom aide or two? Well, for one, they don't have enough of them as is. They're already spread thin and, at my son's school, there will be an increase next year of students who need them.

Second, when doing budget cuts, the last things you want to cut are those that put you at legal risk. Most of the kids who require a classroom aide, actually require the assistance as part of their Individual Education Plan (IEP). The IEP is protected by federal law (check IDEA). When a school can't or fails to uphold a child's IEP they violate federal law. They open themselves up to due process complaints and lawsuits. And if it isn't clear already, legal actions cost money, and it won't be that of the child's family.

Third, and every bit as important, the classroom aide is crucial for balancing the classroom with out special needs kids. It's because of the classroom aide that the teacher can keep concentration on the bulk of the class while the aide helps the one who she would have to constantly stop for otherwise. So now we affect the education of every single child in the room. And the special needs kids in these classes have the same right to be there as any child (so let's not even get into that, besides removing them all means putting them somewhere else and hiring someone qualified for those numbers and oops.. even more money!)

So, cutting classroom aides is like cutting off your legs for weight loss. If your child has an IEP or needs that classroom aide in any way, you should be making noise right now. The school board needs to hear from you. If you can't make it to a meeting, write them a letter or email, get heard and show them that you care about your child's education and educational rights. And even if your child doesn't have an IEP, your child will be in class with students that do. This isn't extracurricular activity, it's the main core of your child's education. Think about it.

Now, I want to address one more angle of this and it's a response from one of the board members that perplexed me greatly. A voice of the board said that we need to make sure and talk to our legislators, representatives, and related politicians. That seems fair, except for one small thing. Now, I can tell you that I agree, we should make as much noise as possible to get the state to put the funds into our schools where it belongs. But, correct me if I'm wrong, didn't the board members get elected to represent us? When I went up to that podium, I was recorded on camera. Everyone was. It seems to me that we give them plenty of info that way to take to the officials they should have open access to. When we email them and write them out concerns that should be the same deal. So, while it's a fair idea, telling us to go talk to someone else seems like saying, "please go over my head".

But seriously, if I'm misunderstanding their function, please, please correct me. I don't want to be unfair and I understand that their job isn't an easy one. I understand that there are lots of jobs and issues involved. It just seems to me that they are the first line in our "chain of command" on these issues to go to. Maybe it was just the delivery of the message? Well, I have no problem with talking to who they say to talk to... so long as they are right there with me doing the exact same thing as someone who represents my district.

In closing I will say this; if the cuts continue and you find it affects your child's education... if it causes failure to uphold an IEP... you need to step up to bat and file complaints. Because, if our complaints now aren't enough then we need to take more drastic steps. Maybe when enough of us start suing and filing due process complaints (which will go right up to county and state levels), it will get their due attention. Unfortunately, that will hurt the system more, but that is not the fault of the parent. We are only standing up for our children's educational futures.