Elise, A.K.A. aspergers2mom
We have all heard the stories. That mother who just won’t listen when administrators talk about her child, the parent they delegitimize because she got frustrated and yelled at them, the one who thinks she knows her child best. So what do you do if you are faced with a problematic situation? How do you channel your frustrations to get your child the services they need? It wasn’t until I was in my forties that I learned that you need to do what you need to do for your kids -- who cares what others think? This is what I call "embracing your inner bitch."
Now, embracing your inner bitch is a good thing. You use your frustration and your anger to motivate you, but you do so in a way that is calm, intelligent, and very thought-out. You leave the yelling and the kvetching and the breakdowns for home, Facebook, or Twitter (as long as someone from your district isn’t following you on social media). So the question becomes: how do you get what your child needs without throwing a fit?
To start with, come in prepared -- very prepared. Read the law books available from different law sites. I like Wrightslaw. Their books are succinct and to the point. They guide you through the process with wonderful examples. I also like their website, www.wrightslaw.com -- it has a lot of information. Go to your state education department, they should have guidelines for special education accommodations. (My state even has a special section on autism.) Check the federal government’s website -- remembering that an IEP is based on the Individual with Disabilities Education Act (idea.ed.gov) and a 504 plan is based on the Americans with Disabilities Act (www.ada.gov). Make sure you are well-versed. Learn the lingo. Learn the difference in the two laws and how they apply to your child.
Next, get your child's medical information in order. Make sure you have a diagnosis letter, plus a letter outlining the supports the doctor recommends. The schools do not have to take the recommendations into consideration, but these letters show that you are serious, and they are good information if you decide to pursue a due process hearing. The school will know you are not coming alone and that you have back-up. (Doesn’t always work, but at least the school is on notice.)
If you had outside testing done in addition to the testing done by the school, bring those results with you too, and confirm that they was sent to the school beforehand, so the school can't say they haven’t seen the test results. If you can work it out, it helps if the doctor or psychologist attends or can be phoned in during the meeting. Even if you are told their participation is not necessary, I would insist strongly. (One more reason why state regulations are very important to understand.)
The next thing to know: what services are available in your school district? Your child is entitled to a free and appropriate public education (FAPE) in the least restrictive environment (LRE) in which they are making academic progress. This does not mean that they are getting A's. Children get promoted to the next grade who get C's as well. If they can function in a mainstream environment with support, e.g., an aide, then they should be mainstreamed. That would be the LRE. However, if your child still cannot learn and still has meltdowns and still cannot function in a mainstream setting, then it might be wise to seek a specialized program for them. Now you must, with a big "must," understand the programs available in your state.
Here in New York, the Education department has to certify any program, and you are obligated to try to keep the child in-state. You have to look in-state first for residential placement as well. Get a list of appropriate programs and talk to the directors; go see the programs with and without your child. The school is supposed to view the programs as well. There is an application process that the school has to abide by for each school. Make sure that they do: request to be copied on all paperwork, and call the programs to ensure everything is being processed as required. To quote Ronald Reagan, “Trust but verify.”
The last step is to prepare the IEP to fit the program the child is entering. Make sure that the goals are realistic and that there is also some growth allowed, too. Goals should not be too easy. If the child reaches all their goals, they don’t need services anymore, right? You should also demand more than educational goals. Your child needs social and emotional goals as well, and, very very importantly, executive functioning goals. These executive functioning issues can be the bête noir of our children’s existence. If the children don’t learn how to organize, and process for themselves, they will be lost in their lives.
These are just a few steps to remember when preparing for that IEP meeting. And, again: you don’t have to yell. You don’t have to threaten. Instead, learn, organize, and collaborate with those who work with your child. Unfortunately we sometimes may need to go the route of hiring a lawyer, which is not pleasant. Hopefully for you it will not come to that. It didn’t for us, because I followed the guidelines above.
So put aside that notion of being the nice girl, the one everyone has to like, the one who has to please those around her to validate her self-worth. Use your intellect. Use your strength. Use your ability. Use your wisdom. Use your power. Embracing your “inner bitch” is a good thing. And if necessary, make sure they learn what the word “bitch” really means.
A version of this essay was previously published at Raising Asperger's Kids, asd2mom.blogspot.com