How do I rebuild trust on my IEP team once its gone? Monday, Aug 13 2012 


I know the feeling. You feel like the school has betrayed you. The IEP team didn’t agree with your recommendations, you had to fight them, and now your IEP meetings feel like a very uncomfortable party where the host isn’t wearing any pants. I’ve been there, and I have some advice on how to get that trust back.

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April 2012: Autism Acceptance Month Friday, Apr 20 2012 


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I normally write these posts on World Autism Awareness Day, but this year I’ve been so busy I haven’t had time to write until now. Also, I have a lot to say and wanted to let my thoughts coalesce into a more solid form prior to posting my annual self assessment. I like to take stock of where my family has been and where we are now, and I finally feel ready to do that.

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The Family Educational Rights and Privacy Act, or FERPA: Part 2 Q & A with DOE Monday, Oct 24 2011 


To continue and expand on our discussion of FERPA, I called the Department of Education for some clarification. The number I used was 800-872-5327 (800-USA-LEARN). I reached a courteous and knowledgeable woman who had some great answers to my questions. I didn’t tape it, nor did I get her permission to quote her, so the replies are my paraphrasing based on my notes of our conversation. If you have questions, I encourage you to call DOE. Be prepared for the post call survey though, which will come a few days later. It freaked me out when a recorded voice said “This is the Department of Education…”

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They’re our kids, not our causes. Sunday, Oct 23 2011 


As the dad of a kid with autism I go to battle a lot. I fight stereotypes, debate our politicians and argue with the school. However, as much as I am passionate about the causes involved in autism I am still aware of why I’m fighting. I’m fighting for my son.

Its easy, when I get into heated debate mode, to start “letting people have it.” I’m a fairly witty guy with a knack for turning a quick phrase, and consequently I have the dubious gift of being able to make people feel inept or uneducated. However, when I start to go down that road I try to ask myself a few questions.

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Need some help with school advocacy? Try V.O.P.A.! Thursday, Oct 20 2011 


Okay, we all know that the folks in the school try hard. In spite of that, sometimes things go wrong. None of us parents want to do some of the things we say, like hire an attorney, sue the school, or complain to the state and federal departments of education. However, sometimes we know the school is doing something wrong but, since we’re not educators, we don’t know how to say what is wrong in a way the school will understand. If you’re in Virginia, you can get some help from V.O.P.A., the Virginia Office of Protection and Advocacy.

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The Family Educational Rights and Privacy Act, or FERPA: Part 1 Friday, Sep 9 2011 


The Family Educational Rights and Privacy Act, or FERPA, is a handy federal law for parents with kids with disabilities. It protects the privacy of student education records, but it also gives parents rights to access those records. That’s the part of the law we will be chatting about today.

First off, you can find the law here on ED.gov, the Department of Education’s web portal. The site has good information everywhere, but you can read the full act online here at GPOAccess.gov. Its good reading, and we’ll be choosing a few specific parts to highlight.

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Autism Parenting Skills Part 3: Trust Your Instincts Friday, Aug 5 2011 


In this day and age we all question ourselves about everything. I’m not saying that self reflection is bad, but there is also a time when you have to go with your gut. Hopefully this post will help you figure out how to turn your instincts into challenge detection devices for your kids!

The most common thing I hear from parents of folks on the spectrum is “How do I know I’m doing the right thing.” I ask myself that one, and I also hear it from my wife, and my answer is always “our son is learning and growing. That is the right thing.” I’m a pragmatic type in that I measure right or wrong by outcome. If our outcome is positive, if our son has learned a skill or grown as a person or we as a family are more functional then we did the right thing. If it goes the other way then we didn’t.

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The Individual Education Plan or IEP Part 3: The IEP meeting Friday, Nov 20 2009 


Alright, you have done your prep work, research, and you are ready to sit down with your child’s IEP team and find the supports that will make your child successful. I’m going to start this with a list of “Dos” and “Don’ts.” If some of them seem like common sense then you are ahead of the game.

DO:

Dress Nicely
Remain Calm
Bring materials with you
Have your materials organized
Have outside OTs, PTs, SLPs and other experts attend the meeting
(If a couple) Sit on opposite sides of the table
(If single) Sit at the head of the table
Have a notepad handy and take notes

DON’T:

Dress like you are going to the gym afterward
Attack everything they team members say
Bring cookies, muffins or other snacks
Agree when told that your child doesn’t listen, sit still, etc.

First off, if you dress nicely they will take you more seriously. It seems elementary, but I have seen folks show up on clothes that looked like they had never been washed. I’m also going to give you a mantra to help you stay calm. “Whoever loses his/her temper loses the battle.” Its okay to be strong and firm, but yelling and screaming will derail all the positive work you have done in a second. If you have materials, bring them and make sure they are organized. Bring your child’s other therapists if they will attend. They can help you make a good case for your child receiving more services. You need to be able to see everyone’s faces to gauge reactions, thoughts, etc. As a couple you can do this most effectively by sitting on opposite sides of the table, and if single sit on the end.

You can’t attack everything people say and expect them to take you seriously, or even want to work with you. That’s the key to the IEP team. You have to get everyone on your child’s side. I’m not saying be a milquetoast, but respect everyone’s right to their opinion. You can change their minds later with the right tools. I’m going to capitalize and restate this one for you: DO NOT BRING COOKIES, MUFFINS OR OTHER SNACKS TO YOUR IEP MEETING! Some administrators may view it as a bribe, others may refuse on principle, but the main reason not to do it is because the IEP meeting is a business meeting, not a social event. The last one is a bit of a paradox, since I’ve told you not to attack everything they say. However, allowing people to have their say and agreeing with them are two different things. You can listen to them respectfully and still not nod your head or say “Yes I have seen that.”

The key, in my opinion, is to start the meeting positively. We are very friendly with our child’s IEP team. Typically it will start with a review of information, and this is a good time to present your child’s PLOP. Make sure it is entered in the IEP. This puts a positive view of your child right up front. Other people on the team will also add their observations at this point. This is a good thing. It starts the process that I like to call “puking.”

Working with our kids is hard. As parents, we know that. Just because it is hard, however, doesn’t mean it is impossible. However, in the beginning of the meeting I want you to listen. Be an active listener. Ask questions, make notes of rebuttals or ideas and show genuine interest. The puking can go on for over an hour, due to some weird group speak phenomenon I have witnessed. When the puking finally peters out, then and only then can you go to work. It may take a while. We have had IEP meetings lasting 3-4 hours. Don’t worry. Take all the time you need to make sure they are done puking all over the conference table, then you can start working on changing their attitude.

As an advocate, you have to be the catalyst. Since the people reading this probably don’t have a law degree, we have to figure out how to be catalysts in a positive way that makes people want to help us. The first part of that is listening. The second part is responding. Its tough to get through the puking without getting mad, but remember whoever loses his temper loses the battle. Remain calm, and make notes about how you will address these issues.

Your time to shine is when the team starts going through the modifications and supports. This is where you start asking for things, and when a team member objects using their “puke,” you simply use your notes to refute their argument. For example, one IEP meeting we attended, the consensus was that our son didn’t listen. We know that, as he has an auditory processing deficit. However, we had to let them puke that out for a good half hour. Once they were done my wife said “He has auditory processing deficits. He may not understand what you are asking him to do.” Then it was like a light bulb came on.

The real misconception with autism and autism spectrum disorders is that these kids are behavior problems. In fact, most kids on the spectrum have sensory issues and their “behavior problems” are due to overloaded sensoriums that lead to them acting out. This is the key point we need our IEP teams to understand and support. When they are puking, listen to the complaints. Are they complaining about behavior? If so, you should always put that back on them. “What was happening when he had this behavior?” “Who was in the room?” “What was the class doing?” The hope is that you can find what triggers and overloads your child’s senses and give him support then, because that’s when he needs it.

Okay, this one is long enough. Next up: What to do if things don’t work out at the table.

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