School is finally out for summer, but our jobs as advocates is never over. I have reposted this blog from January 16,2010, just so we remember to exercise our mommy/daddy muscles.You know muscle memory is a wonderful thing. Once learned it is very easy to remember just like that karate form (beautiful isn't it!) BTW both the boys and I actually studied this from of Kenpo for years, but never did get to this level. Restarting our studies is something I have wanted to do for awhile.Unfortunately there are no Parker Kenpo schools in my area anymore. Maybe someday.
We have all heard the stories. That mother who screams and yells at their child’s IEP meeting. The one who every professional talks about, that ”crazy” mother who just won’t listen when they talk about her child. Yeah, that “crazy” mother, who they delegitimize because she got frustrated and yelled at them. You know the one that thinks she knows better than them about her child. I have talked about the condescension of the professionals, it is a pet peeve of mine. Personally there are times I think that some of us would probably like to punch out these professionals so they are lucky if all we do is yell, but I digress. So what do you do though if you are faced with a problematic situation? How to do you channel your frustrations? How do you get for your child what they need? I call it embracing your “inner bitch.”
Throughout our lives we have been taught to be nice. To play nice. To talk nice. To be pleasant and friendly. It wasn’t until I was in my forties that I learned a good lesson. Who cares what others think? You need to do what you need to do for yours. That is what I call “embracing your inner bitch.” Now I had always had that attitude, you might say, because the people in my little hamlet were none too happy when collegeman came in district and I didn’t care, but I learned to have that attitude with the professionals too, on the rare occasion that it was necessary.
Now this is a good thing. You use your frustration and your anger to embrace what you are going to need to do, but you do it 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 the children need 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. There is a lot of information available. Also go to your state education department, they should have guidelines for special education accommodations. In fact, in my state there is even a special section on autism. Check the federal government’s website. Remember an IEP is based on the Individual with Disabilities Education Act and a 504 plan is based on the Americans with Disabilities Act. Make sure you are well versed. Learn the lingo. Learn the difference in the two laws and how they apply to your children.
Next, get the medical information in order. Make sure you have a diagnosis letter with you and a letter outlining the supports the doctor recommends. Now this is not a guarantee but it is a good place to start. The schools do not have to take the recommendation into consideration, but it is good to come armed with something that shows you are serious. It is also good to have this information if you decide to go to 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, make sure that is with you too, and that it has been sent into the school before hand. Don’t let them use the excuse that they haven’t seen the testing, to delay helping your child. If you can work it out, it helps that the doctor or psychologist is there at the meeting or at the least the committee should call the outside doctor during the meeting. Even if they say it’s not necessary. I would insist strongly. (This is why the state regulations are very important to understand)
The next thing to know is 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 As. Children get promoted to the next grade who get Cs as well. Also if they can function in a mainstream environment with support, like an aide, then they should be in the mainstream. 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 some specialized program for them. Now you must, with a BIG MUST, understand the programs available in your state.
Here, in NY, the Education department has to certify any program. You are obligated to try to keep the child in state. We are very close to two other states with programs, so I am not talking residential placement, but for that you have to look instate as well first. Get a list of the appropriate programs and talk to the directors; go see the programs with and without your child. The school is also supposed to go view the programs. 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. In fact see if they will give you copies of the applications. Call the programs to make sure that everything is being sent the way it is supposed to. To quote Ronald Reagan, “Trust but verify.”
The last step is to prepare the IEP to fit the program that the child is entering. Make sure that the goals are realistic and that there is also some growth allowed too. Don’t let them make everything too easy. If the child reaches their goal, they don’t need services anymore, right? There should also not just be educational goals, but social and emotional goals as well and very very important, EXECUTIVE FUNCTIONING goals. These executive functioning issues are the bĂȘte noir of our children’s existence, I have remarked on that several times in the past. It sounds simple, but if the children don’t learn how to organize, and process for themselves, they will be lost in their lives.
So these are just a few things to remember in preparing for that IEP meeting. You don’t have to yell. You don’t have to threaten. You don’t have to knuckle under. What you do is learn, organize, and collaborate with those who work with your child. Unfortunately if all else fails sometimes we do have to go the route of hiring a lawyer. It is not pleasant, but it may be necessary. Hopefully for all of you it will never come to that. It didn’t for us, because I followed the above rules.
So put aside that societal contretemps of being the nice girl, whom 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 you make sure they learn what the word “BITCH” really means.
Until next time,
Elise
Help for taking a child from PDD-NOS to Asperger's to an A student in college and beyond
...or,
HOW TO EMBRACE YOUR INNER BITCH TO MAKE SURE YOUR CHILD HAS THE FUTURE OF THEIR CHOICE
Friday, July 2, 2010
Don't Yell Just Embrace Your Inner Bitch
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Love it!
ReplyDeleteI've been very lucky with my son's school. I have had the support I need and the teachers there know I want my son to take initiative and stop being so introverted. My battle is with his grandparents. They baby him too much, he's 9 and they still cut his food for him and coddle him over other little things. I don't. I tell him he's too big for help with some things and walk away. I only help if I can see it will render him a complete meltdown puddle but he knows my limitations. I go meltdown on him and he does not like that so I use my tantrums as a tool to control his.
ReplyDeleteI so looove this article. Been there, done that, but it helps to know I'm not the only one. My experience with the process has been so dreadful I washed my hands off the public school system altogether. Just wish there was a way to expose professionals (medical and educational) to the comments on #youmightbeanautismparent. Maybe then they won't look at us funny when we report stuff that all us moms recognize when we hear it...
ReplyDeleteRead2Mama- welcome to my blog. Maybe they shoudl read that hashtag...in fact everyone shoudl and then maybe the world will understand us a little bit better :)
ReplyDeleteHello Elise. Marianne R. led me to you. I am ssety in twitter. My 15 yr old has AS, has been suspended fr school since Sept bec of profanity, etc. The school however, understands his condition, I beleive, by letting him study at home, and complete the take home assignments, and then they will see how to go from there. The problem is instead of adhering with the school, my son continues to be in-denial as to his condition, has stopped taking his 'mood stabilizer' meds, and refuses to have any help. His father, whom Ive been separated with is a problem as well. Not in good terms with me for years, he is not exactly a good role model for my son. I know what you say when You mention let the bitch come out but I have to control my anger when my son deliberately mistreats me! He lives with me. SO hard.
ReplyDeleteSsety- it definitely seems that your son needs more help and so do you. Of ourse part of his anger could b because of the seperation and that is why he is acting out. I suggest you need to talk to the dr tht prescribes his meds and let the dr know what is happening. I find it odd that he has been suspended since sept for just profanity. Is there alot more to the reason? Is he not able to handle the routine does he act out violently? It sounds to me that your son needs a therapeutic program, that includes therapists as well as academics.just sitting at home is not doing either of you any good.
ReplyDeleteAlo i suggest you need some therapy to learn to deal with our sons issues as well as help ou through this very rough patch in your life. Embracing our inner bitch is truly about how to deal with he outside world but it is all about figuring out how to help your child and yourself in th best way possible.
THanks Elise. The reason for the suspension was more than only profanity. He doesnt really follow the routine. His curriculum is modified to suit him, with a 'shadow teacher' beside him in some subjects, but still he resorts to making fun of other 'autistic; kids, profanity to the girls. This being a Baptist school (I chose this bec of the modified methods they provide to special children)
ReplyDeleteThey are a bit more stringent, and one big issue, even in other schools is religion. My son argues endlessly, deliberately disobeys the teacher, and just is very opinionated and argumentative, plus the fact that he is easily agitated.
We have been seeing a developmental pediatrician, who prescribed medicines way back but my son just doesnt want to take them. Even therapy he just doesnt want. It is very sad that the one person who can make a difference is his dad, who is absolutely no help. No help. Just minutes ago, he blurted out Mom, am I autistic? Am I abnormal? Earlier, he was just banging the pitcher on the table, my father,his grandfather corrected him and was told "Shut the fuck up' He is really sinking low. The dr is well aware. The school doesnt call. You see the school agreed to let him study at home, and being his work to school little by little - just to correct what I said. His status is not suspended anymore, since Nivember. They are giving him a chance to complete the school work and submit what he can finish, like a home study. I have told the school to accept him even just for a few days a week, but they seem to be very hesitant.
But they have a point. My son does not want medicines! His condition needs meds, without which he cannot have a normal life, at home or at school.
ssety: just so you know...alot of your son's refusal to deal with issues and be angry about them are also normal. BTW so is the swearing and some of the physical outbursts, as well as being argumentative and disobedient. However, he needs to behave. Aspergers is no excuse in the long run. noone is going to accept that as an excuse anywhere. It odes sound like the school is trying its best. I think they may be concerned about his erratic behavior and fear about the safety of other students.
ReplyDeleteBut you are right he needs his meds. it will help. I repeat, if he won't go for therapy you need to so you can figure out a way to help him. I am sorry that his dad won't help. As I mentioned earlier that could also be a big part of his anger. Somehow you need to get him back to the therapist.It may take time but the therapist is needed to help your son figure out his issues and how to deal with them. You nor your father can do it. Its also in the nature of a teen to not listen to his parents and for a teen boy it goes double when its his mother talking.
The teen years are very very difficult and having a child with aspergers makes it more challenging. I have gone through it with both of my boys. BTW email me at asd2mom@live.com instead of posting comments if you want.
The religion thing, well I have one of those myself. I had him take a class on Judaism, in college since we are Jewish and I swear he gave the Rabbi a stroke every week. The I had him take a class on Islam with his advisor. Luckily his advisor is a very understanding man. Its not that my son picks on any on particular religion, he has no use for any religion.
So well this may not make you feel all that much better...remember that alot of how your son is behaving and reacting to things is quite typical. It doesn't mean you or anyone else did anything wrong for him to be this way. But try as hard as you can to get the help he needs even if you have to go yourself. Maybe the therapist can come up with ideas on how to get him to take his meds.
SSety- I just discovered this site and wonder how you're doing now. We had a situation somewhat similar to yours and my son's psychiatrist recommended checking him into the local psychiatric hospital. Needless to say, my son was not happy about this, but after a month there, he was stabilized and in a vastly better place emotionally and mentally than when he started. During this time, they were able to shift him from meds that were just helping him get by to meds that really helped him cope with everything-- we saw a HUGE difference. While I won't say that things are perfect at this point, that was 2 years ago and I would do it all again in a heartbeat. Insurance covered most of the costs, and it brought some sanity back into our very stressed-out household.
ReplyDeleteSSety - I just read this thread - I am concerned about you too. My AS son is 17 and now past the most difficult part of his childhood (we hope!) but 15 was hell on wheels. You are in a pickle.
ReplyDeleteIs there any way you can find a male role model and mentor for your son? I can't tell you how much male energy has helped and is still helping my son. It really saved him from his anger and confusion about life. My love helped, but he really needed to talk to my husband to work things through.
I'll be praying for you!