Thursday, June 6, 2013

How to Advocate like a Rock Star

When we exited the special education classroom the county intended to place Simon in, the representative accompanying us turned to Brian and I (who I think must have looked rather shocked) and said; "I am so sorry. I am so sorry it has to be like this. But you will have to fight. It is always going to be a fight. I hope things will get better."

Indeed, we were upset by what we saw. I won't go into the gory details, but the environment that we were sent to review was not anything like what I know Simon needs (and much less than what I want for him!). Unfortunately, we weren't being given a choice. As a kid that needs special education Simon's options are very limited. You either take what the county provides, or you hire a lawyer to fight for private placement in a school that deals exclusively with special needs (and will only accept you with county referral and therefore county dollars to follow). That option is one we are likely to explore eventually, but for now we want Simon to be with "typical" peers as much as possible, and that means public placement. 

Fighting for your child's right to be included, to have adequate access to necessary programs and tools to give them the greatest chance at success, or to simply be treated with the dignity and respect that every person deserves, is a fight that I am pretty certain all special needs parents will encounter at least once if not multiple times. You fight for it in small day-to-day skirmishes -- like reminding well-meaning people not to use the "R-word," or teaching other kids (and parents) how to interact with your child (you know, like he's a kid). Sometimes you fight for it in carefully chosen battles -- like taking on large organizations that need a wake-up call when it comes to their accessibility. And unfortunately, sometimes you realize you've just set foot in a war-torn nation where you're going to have to find a way to make a habitable environment happen -- like the healthcare system, or the realm of public education. 

We've been lucky up until now when it came to school for Simon. I just didn't realize HOW lucky we were until we saw how bad other places could be. The past several weeks have been a very distressing wake-up call on the state of special education. Fortunately, however, I'm (a pain in the ass) persistent and I kept asking to look at other programs -- even though the one we were told we had to go to wasn't right. And fortunately, I was allowed to look. Even better, I found out that though there are a lot of bad programs - there ARE other good programs, albeit fewer and further between. Once I knew this, I knew I had to fight for alternate placement for Simon. Today, I'm so happy to be able to report that we are able to make that happen.

I won't pretend to know all there is to know about advocacy, or about special education. It is a big, complicated, litigious thing and I have just scratched the surface. But, I have learned a few things and I want to share them here just in case -- like me -- you are at the scary start and not sure what to do or where to look for help.

So, here goes:

1. I've said this before, but it is worth saying again -- YOU ARE THE BEST AND ONLY EXPERT ON YOUR CHILD. You know what your child needs. You know what works and what doesn't. And, you have to admit it, at this point you have a pretty well developed "gut" sense about things (total super mom skill!). If what you are being offered seems wrong, trust that feeling. If it seems right, trust that, too.

2. Do your research. NO ONE else can do this for you. If you aren't sure about something or somewhere, insist on seeing alternate options. You can't know what you are looking at if you can't compare "apples to apples." ASK other teachers, administrators, therapists, doctors, and parents. Join all the social media groups for special needs parents in your area, attend the parties and playdates -- build your network (it is vital!) and then keep your ear to the ground so that you can find out the "scoop" on programs, teachers, administrators, etc. You can't use hearsay as a reason not to go with a program, but you can use it to let you know whether or not your gut was correct, and then you can dig deeper into the issues you are concerned about in a more informed way. 

3. Know the rules. Like I said, this is a litigious process. Ask about the rules of engagement, attend workshops, call advocacy services (there are even many free options available through therapy centers), to make sure you know what you can and can't expect. You have to be reasonable in your expectations (and yes, expecting that your child is safe, respected, and given access to adequate resources ARE reasonable accommodations to request) in order to have a chance at success. Make sure that your reasons and needs are expressed in a way that reflects exactly what you have documented (through school reports and other assessments) as what your child needs. Write it out. Provide documentation. Keep a paper trail -- no matter how many miles long that trail is.

4. Get help. Enlist the help and support of all the people that you know care about your child and want what is best for him. We were very lucky to have Simon's current school administration behind us -- their support was invaluable and I will thank them every single day. Even still, I called an advocate for expert advice, consulted with the experts at Simon's other care centers and found out exactly who to talk to "on the inside" about my concerns. 

5. Don't give up. Being persistent (as well as reasonable and polite) is key. Like I tell my students -- the only people that are guaranteed not to succeed are the ones that stop trying. That "trying" may not look exactly the way that you hoped (maybe you didn't get all -- or much, or any -- of what you wanted) but don't stop trying to make it work, talking to people, getting help, advocating for your kid and showing everyone how it SHOULD be done. All throughout this process, whenever the going got tough, people reminded me that the only way things will ever get better for all of our children is if those of us that can continue to stand up for them, as much as we can, whenever we can. Truthfully, "fighting the good fight" is hard -- it is time consuming, expensive, emotionally draining, and even disheartening at times -- but it is some of the most important work we can do as parents (and maybe as people). 

And what could possibly be more worthwhile?



17 comments:

  1. It is such a shame that we have to fight so hard, isn't it? I think the schools just assume we won't find out the law! I, like you, learned very early that the fight was going to be a marathon, not a sprint! Our best ally was Wrightslaw's books (especially "From emotions to Advocacy") and I attended one of his workshops! Things have been much better around the school since then!
    Best of luck!

    ReplyDelete
    Replies
    1. what a miracle Please help me thank Dr Ehiaguna for his good work I really believe Herpes have cure I was Herpes positive over since 1year plus before I come across a comment Dr Ehiaguna that he have cure to any disease and virus but when I saw it i have it in mind that he can’t cure Herpes I just decided to give a try I contact him that night lucky to me he said yes but I don’t believe him I think it was a scam or some thing like that but I still hold on to see the work of Dr Ehiaguna if he is saying the true he ask for different thing and some question about me I give him all the detail he needed and I wait to see his reply to my problem after all the thing is done he ask me to go for check up I went for Herpes test I cant believe I was negative thanks Dr Ehiaguna for help me for not dying at this young age if you need help contact him now drehiaguna@gmail.com or WhatsApp him on +2348073908953 and He also have herbs medicine to cured the following diseases; eczema,urethra wart,chronic problems.Herpes, Cancer, Als,Hepatitis, Diabetes, HPV,Infections,ulcer  ETC

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    2. Good news this is to everyone out there with different health challenges, as I know there are still a lot of people suffering from different health issues and are therefore looking for solutions. I bring you Good news. There is a man called Dr Emmanuel  a herbal practitioner who helped cure me from HSV (2), i had suffered from this diseases for the past 5 years and i have spent so much money trying to survive from it. I got my healing by taking the herbal medicine Dr Emmanuel sent to me to drink for about 14 days . 3 days after completion of the dosage, I went for a medical checkup and I was tested free from HSV. all thanks to God for leading me to Dr Emmanuel who was able to cure me completely from this deadly diseases, I’m sharing this so that other people can know of this great healer called Dr Emmanuel because I got to know him through elizabeth who he cured from HIV. I was made to understand that he can cure several other deadly diseases and infections. Don’t die in ignorance or silent and don’t let that illness take your life. Contact Dr Emmanuel through his email traditionalherbalhealingcentre@gmail.com You can also whatsapp/call him on:+2348140033827 .He cure all forms of disease {1}HIV/AIDS {2}DIABETES {3}EPILEPSY {4} BLOOD CANCER {5} HPV {6} BRAIN TUMOR {7} HEPATITIS {8}COPD{9} SICKLE AND ANAEMIA.etc Be kind enough to share as you received.  

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  2. Hello viewers all over the world am Jacky scob, I want to testify of what Dr Lewis hill did for me. i was having a very notorious and serious sickness called seizure and i was very in lost of hope i never believed i was going to be cured until i meant these great man called Lewis hill who God sent to help me cure my sickness . just a few moment with these great man he cured my infection His herbal remedy is the only permanent solution to Seizure. i want you to know that all hope is not lost until every thing is done if you also have these following infections contact his email drlewishill247@gmail.com

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  3. I am Sophie from Canada, I once suffered from a terrible and Chronic epilepsy ,since i was bone , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 31 years, this was really a terrible illness ,on thin one day that i was going through the internet,and i came across a post of Mrs Kate on how his son was been cured from epilepsy through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine i used it for 4 weeks as prescribed and i was totally cured of epilepsy within those week of usage,on thin now i have not experience any sign of seizure.if you need his help you can Contact this herbal doctor via his email drwilliams098675@gmail.com for help

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  4. CURE TO EPILEPSY WITHOUT ANY SIDE EFFECT: My son was diagnosed with epilepsy. My son epilepsy was something i don't understand he cry so bad that he was usually in bed for about 8 hours and soreness killers (even prescription strength) don't stop the crying (except taking him out) even if he take triple the dosage. my son symptoms was really so bad,that we have to make hospital our home, and all the doctors would do is monitor it, prescribe him countless of control pills and pain medication with no positive result. until recently I contacted a Doctor who put an end to this problem. If you are having same problem with epilepsy son contact Dr. William for advice and possible solution without any side effect (drwilliams098675@gmail.com

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  6. Thanks to Dr Williams I am so happy today, my wife have been suffering from epilepsy for so many years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to get my wife out of this , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after she took his medication as instructed, my wife is now completely cure from epilepsy within one month of usage, i am so much happy, thanks to Dr Williams for helping me get my wife life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have someone with epilepsy you can email him on drwilliams098675@gmail.com for more information .

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  7. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DON FOR MY FAMILY.This information will be useful for Epilepsy patients who is willing to use herbal medicine. My daughter had temporal lobe epilepsy, She had seizure and had a grand mal with rage episode. Our daughter's seizure is constant throughout the day. We had used several medicine which include: Epilim and Keppra, experience seizure control at the cost of serious debilitating side effects. It was during a casual conversation with a friend that I learned about herbal Dr. William,who uses herbal medicine in curing people from epilepsy,i was so glad to contact him on his email and make an order for his medication, it does not have any side effect. I am so glad to say that she has been seizure-free since July 2015 after taking William medicine. this a miracle cure?contact him for more detail (drwilliams098675@gmail.com) thanks once again admin for such an informative blog.

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  9. I am Sophie from Canada, I once suffered from a terrible and Chronic epilepsy ,since i was bone , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 31 years, this was really a terrible illness ,on thin one day that i was going through the internet,and i came across a post of Mrs Kate on how his son was been cured from epilepsy through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine i used it for 4 weeks as prescribed and i was totally cured of epilepsy within those week of usage,on thin now i have not experience any sign of seizure.if you need his help you can Contact this herbal doctor via his email drwilliams098675@gmail.com for help

    ReplyDelete
  10. I am Shelley from Los Angeles,California, I want to testify on how i got cured from seizure, I have suffered from seizure since the year 2011 with so mush anxiety ,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the fainting and muscle spasms , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including seizure, at first i doubted if it we be able to cure my Generalised tonic-clonic seizure , but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from seizure just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from seizure you can contact him through his email on drwilliams098675@gmail.com for help.

    ReplyDelete
  11. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DON FOR MY FAMILY.This information will be useful for Epilepsy patients who is willing to use herbal medicine. My daughter had temporal lobe epilepsy, She had seizure and had a grand mal with rage episode. Our daughter's seizure is constant throughout the day. We had used several medicine which include: Epilim and Keppra, experience seizure control at the cost of serious debilitating side effects. It was during a casual conversation with a friend that I learned about herbal Dr. William,who uses herbal medicine in curing people from epilepsy,i was so glad to contact him on his email and make an order for his medication, it does not have any side effect. I am so glad to say that she has been seizure-free since July 2015 after taking William medicine. this a miracle cure?contact him for more detail (drwilliams098675@gmail.com) thanks once again admin for such an informative blog.

    ReplyDelete
  12. Thanks to Dr Williams I am so happy today, my wife have been suffering from epilepsy for so many years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to get my wife out of this  , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after she took his medication as instructed, my wife is now completely cure from epilepsy within one month of usage, i am so much happy, thanks to Dr Williams for helping me get my wife life  back  again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have someone with epilepsy  you can email him on drwilliams098675@gmail.com for more information .  

    ReplyDelete
  13. what a miracle Please help me thank Dr Ehiaguna for his good work I really believe Herpes have cure I was Herpes positive over since 1year plus before I come across a comment Dr Ehiaguna that he have cure to any disease and virus but when I saw it i have it in mind that he can’t cure Herpes I just decided to give a try I contact him that night lucky to me he said yes but I don’t believe him I think it was a scam or some thing like that but I still hold on to see the work of Dr Ehiaguna if he is saying the true he ask for different thing and some question about me I give him all the detail he needed and I wait to see his reply to my problem after all the thing is done he ask me to go for check up I went for Herpes test I cant believe I was negative thanks Dr Ehiaguna for help me for not dying at this young age if you need help contact him now drehiaguna@gmail.com or WhatsApp him on +2348073908953 and He also have herbs medicine to cured the following diseases; eczema,urethra wart,chronic problems.Herpes, Cancer, Als,Hepatitis, Diabetes, HPV,Infections,ulcer  ETC

    ReplyDelete
  14. Good news this is to everyone out there with different health challenges, as I know there are still a lot of people suffering from different health issues and are therefore looking for solutions. I bring you Good news. There is a man called Dr Emmanuel  a herbal practitioner who helped cure me from HSV (2), i had suffered from this diseases for the past 5 years and i have spent so much money trying to survive from it. I got my healing by taking the herbal medicine Dr Emmanuel sent to me to drink for about 14 days . 3 days after completion of the dosage, I went for a medical checkup and I was tested free from HSV. all thanks to God for leading me to Dr Emmanuel who was able to cure me completely from this deadly diseases, I’m sharing this so that other people can know of this great healer called Dr Emmanuel because I got to know him through elizabeth who he cured from HIV. I was made to understand that he can cure several other deadly diseases and infections. Don’t die in ignorance or silent and don’t let that illness take your life. Contact Dr Emmanuel through his email traditionalherbalhealingcentre@gmail.com You can also whatsapp/call him on:+2348140033827 .He cure all forms of disease {1}HIV/AIDS {2}DIABETES {3}EPILEPSY {4} BLOOD CANCER {5} HPV {6} BRAIN TUMOR {7} HEPATITIS {8}COPD{9} SICKLE AND ANAEMIA.etc Be kind enough to share as you received.  

    ReplyDelete

  15. I had my first seizure. I was in high school and didn't want anyone to know that I had epilepsy. I had seizures on two occasions. I was so ashamed and didn't want people to think that something was wrong with me. I finally got to the point where I told people that I had epilepsy. I came to the place that I realized that I had to own my epilepsy or it would control me. Epilepsy hadn't really affected my life until about 9 years ago after my first child was born... I am a wife and mother of two beautiful children. I have lived with epilepsy for 20 years Yet, my life has been dramatically impacted by epilepsy. I had search for cure online without no hope. I met a Man called DR Lewis hill, i contact him I made an order of his medicine and I do not experience seizure anymore i was cured form it. So if you are in the same situation as mine contact him on this email drlewishill247@gmail.com

    He cure listed diseases

    .CANCER
    .HIV
    .ALS
    .HEPATITIS A AND B
    .DIABETIC.
    .HERPES

    ReplyDelete