Hello friends. I have a feeling I'm about to begin a cascade of political posts. So much has been bottling up inside me and I've been mostly quiet with the exception of Facebook posts. With VP Pence breaking today's Senate tie in confirming Betsy DeVos as Secretary of Education I'm done. I can no longer stay quiet. I WILL NOT BE QUIET.
I do not understand nor will I ever accept that access to healthcare is anything other than a fundamental right. This country that deigns to call itself so "great" and yet allows its people to die because they can't afford to seek medical attention; doesn't at all support new parents raising the next generation with paid maternity/paternity leave; and now puts a person in charge of education who has no background in it, has never been to a public education facility or sent her own children to one, who has no idea how to measure student growth (or even that there was more than one way to do so!), and doesn't believe that neurotypical students should have to endure being educated with their atypical peers will NEVER be a GREAT country. PERIOD.
Don't tell me that I have the right to move if I don't like the school system where I'm located. Finding a comparable job, picking up and moving (especially with an autistic child who struggles with even the most basic changes in his routine), and having access to quality healthcare in the new location is NOT easy. Yes, my husband could probably find a job in his field easily enough though I doubt it would allow us to stay together. We depend so much on our support network. When you have special needs kids, you have to. We have two of them.
I've gotten really good at doing just the bare minimum and it takes all of the energy I have to do just that. Hubby works his ass off like so many other men and women do. He's a professional and his job doesn't allow for much time with his family. We knew that when he started this path. What we didn't know was that we'd end up with major health issues in addition to his grueling schedule. It wasn't something that could have been foreseen. Two years into pharmacy school, hubby developed Rheumatoid Arthritis. His joints are incredibly painful and swell. His feet and hands are the worst and his job requires standing all day and constantly opening and closing childproof bottles. Try doing that for 10 or 12 hours a day, 5-6 days a week while your body screams at you to rest. When he comes home, he has little choice but to listen to his body. The medicine he takes to keep the RA from destroying his joints only helps the pain minimally and it compromises his immune system and can cause blood problems, heart failure, Multiple Sclerosis, seizures, and cancer. But it's better than having his joints disintegrate in his 40's. But it leaves little time for him to enjoy his family or even contribute to the household in any way other than his income. Changing directions career-wise wasn't an option when he was diagnosed since he had already taken out expensive student loans for his education. It's still not an option because of those student loans which can't even be discharged if we had to file for bankruptcy.
I have so much going through my head right now that I feel like I have verbal diarrhea as I sit here typing my thoughts as they come to me. I'm going to take a break for now to go get Sunshine from the bus stop.
Until next time.
Willow
Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts
Tuesday, February 07, 2017
Wednesday, January 06, 2016
Dear Parents of the Boy in My Son's Class
I hope you won't think I'm being too forward in writing to you. I wanted to reach out because I have had the occasional pleasure of working directly with your son when I volunteer in our children's classroom and he is an exceptional, beautiful person.
You see, your son and mine have a lot in common. My son is autistic and I know yours is too. They are so similar in so many ways even though your boy is less verbal. My son started out there too, but where mine is boisterous and acts out when he's on sensory overload, your son crawls into his shell. I don't know if you know your son is autistic or not and I know it sounds bold of me to diagnose him so quickly. I see his beautiful mind being overlooked in school and I hope that my forwardness can help him in some way. My son has a one-on-one aide to help guide him through his day but your son is alone doing the best he can and it's pretty damned impressive what he is able to do on his own.
I know your child has an IEP because, like Sunshine, he is pulled out of class occasionally for services. My son has only been at this school for a few months so I don't have a feel for the Special Education teachers yet. I wonder if they discovered what I did the first time I worked with him.
Autistic kids have always had a special place in my heart and ever since my own son's diagnosis, I have read every book and blog written by autistic teens and adults that I can find. Some of the most powerful books that helped me understand my child were written by individuals who would be considered "low functioning." Several of them were totally misunderstood, overlooked, and failed early in their education by Special Education professionals who kept them practicing their basic alphabet and very basic words year after year because they were unable to communicate in a typical way. These kids became angry and frustrated because their intelligence was insulted every day. And I don't want to see that happen to your son.
The first time I met him, I was asked by our kids' teacher to work with a small group of four children who needed extra help working on the class assignment. One child was obviously intellectually disabled but tried her best (I've met her mom several times and she confirmed her daughter's diagnosis). One child obviously had attention problems. The third has difficulties though they're subtle. Then there was your son. He was quiet and never answered any of the questions I asked him. He appeared to be paying attention and trying his best to do the work though. He had trouble controlling his pencil but his scribbles looked like more than just random lines and circles. On a whim, I decided to try something I'd read about in one of the books I mentioned above. I moved around the table to sit next to him and as he wrote, I gently placed my hand over his to steady his movements. I can't begin to explain how excited I was when, with that small action, your son clearly wrote out the math problem he'd been given and answered it correctly.
The look on your son's face was priceless. I so very much wanted to hug him and let him know I understood that he was intelligent and capable when given a little support. A little while later, the Special Education teacher came in to pull your son out of class for some individual instruction. He grabbed my hand and looked me in the eye. I'm not sure if he was asking me to go with him or if he was simply saying, "Thank you," but that look has haunted me since that day.
I've seen him several times since then and he has a place in my heart. I've seen him overwhelmed and needing desperately to leave the chaos of the school play rehearsal. I told the substitute teacher that he really needed to go for a walk, but I knew I wasn't allowed to take him. Thankfully, she took my hint and took your son for a drink of water, then hung out with him outside the noisy gym until practice was over. My son's aide candidly told me one day that she agreed with me that your son could benefit so much from having an aide of his own. I wonder if you've thought to ask for one and if so, were you rebuffed like I was initially?
It's hard to advocate for our children and successfully navigate the complex world of IEP's. Then I sometimes wonder if you advocate just as hard for your son, but you're dismissed because of racism. I am very uncomfortable being so bold and I'm only reaching out to you because I know deep in my soul that your son can succeed in school with the right supports. If you need guidance in advocating for him, I'm willing to help you. If you just need a white witness with you in your IEP meetings to help combat racism, I'm here. I'm not saying that anyone on the IEP team is racist. I don't know any of them well enough to know one way or another, but I know that racism exists and the only way to stop it is for those of us with privilege to speak up on your behalf.
I really hope I haven't offended you with this letter. If you would like to talk - even just to have another autism parent to talk to - please feel free to call or email me.
Respectfully Yours,
Willow
You see, your son and mine have a lot in common. My son is autistic and I know yours is too. They are so similar in so many ways even though your boy is less verbal. My son started out there too, but where mine is boisterous and acts out when he's on sensory overload, your son crawls into his shell. I don't know if you know your son is autistic or not and I know it sounds bold of me to diagnose him so quickly. I see his beautiful mind being overlooked in school and I hope that my forwardness can help him in some way. My son has a one-on-one aide to help guide him through his day but your son is alone doing the best he can and it's pretty damned impressive what he is able to do on his own.
I know your child has an IEP because, like Sunshine, he is pulled out of class occasionally for services. My son has only been at this school for a few months so I don't have a feel for the Special Education teachers yet. I wonder if they discovered what I did the first time I worked with him.
Autistic kids have always had a special place in my heart and ever since my own son's diagnosis, I have read every book and blog written by autistic teens and adults that I can find. Some of the most powerful books that helped me understand my child were written by individuals who would be considered "low functioning." Several of them were totally misunderstood, overlooked, and failed early in their education by Special Education professionals who kept them practicing their basic alphabet and very basic words year after year because they were unable to communicate in a typical way. These kids became angry and frustrated because their intelligence was insulted every day. And I don't want to see that happen to your son.
The first time I met him, I was asked by our kids' teacher to work with a small group of four children who needed extra help working on the class assignment. One child was obviously intellectually disabled but tried her best (I've met her mom several times and she confirmed her daughter's diagnosis). One child obviously had attention problems. The third has difficulties though they're subtle. Then there was your son. He was quiet and never answered any of the questions I asked him. He appeared to be paying attention and trying his best to do the work though. He had trouble controlling his pencil but his scribbles looked like more than just random lines and circles. On a whim, I decided to try something I'd read about in one of the books I mentioned above. I moved around the table to sit next to him and as he wrote, I gently placed my hand over his to steady his movements. I can't begin to explain how excited I was when, with that small action, your son clearly wrote out the math problem he'd been given and answered it correctly.
The look on your son's face was priceless. I so very much wanted to hug him and let him know I understood that he was intelligent and capable when given a little support. A little while later, the Special Education teacher came in to pull your son out of class for some individual instruction. He grabbed my hand and looked me in the eye. I'm not sure if he was asking me to go with him or if he was simply saying, "Thank you," but that look has haunted me since that day.
I've seen him several times since then and he has a place in my heart. I've seen him overwhelmed and needing desperately to leave the chaos of the school play rehearsal. I told the substitute teacher that he really needed to go for a walk, but I knew I wasn't allowed to take him. Thankfully, she took my hint and took your son for a drink of water, then hung out with him outside the noisy gym until practice was over. My son's aide candidly told me one day that she agreed with me that your son could benefit so much from having an aide of his own. I wonder if you've thought to ask for one and if so, were you rebuffed like I was initially?
It's hard to advocate for our children and successfully navigate the complex world of IEP's. Then I sometimes wonder if you advocate just as hard for your son, but you're dismissed because of racism. I am very uncomfortable being so bold and I'm only reaching out to you because I know deep in my soul that your son can succeed in school with the right supports. If you need guidance in advocating for him, I'm willing to help you. If you just need a white witness with you in your IEP meetings to help combat racism, I'm here. I'm not saying that anyone on the IEP team is racist. I don't know any of them well enough to know one way or another, but I know that racism exists and the only way to stop it is for those of us with privilege to speak up on your behalf.
I really hope I haven't offended you with this letter. If you would like to talk - even just to have another autism parent to talk to - please feel free to call or email me.
Respectfully Yours,
Willow
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