You are saying some very similar things to what I said in an article I wrote in 1996. I'm thinking, title alone you will be able to relate to it.
She Ain't Broke! (so quit trying to fix her). It was about Deficit-Thinking vs Strength-based Thinking. I wrote it initially as an open letter to the preschool administrators, teachers and therapists when the sent home a 20 page IEP that was filled with "Sheila cannot do...."
My husband and I went through it with a red pen and crossed out all negative statements and turned them around to strength-based statements , "Sheila will be able to...." we placed a big red F on the front page and sent back another document and informed them we would not sign their IEP until it looked like our IEP.
They brought a mediator (school psychologist) in to work with them and us and well... lets just say, the mediator pointed out the benefits to using our approach with all children. I've now worked for that preschool 30+ years.
I am so sorry to hear families are still dealing with deficit-based thinking. It blocks the ability to really see the whole person.❤️
As far as guardianship is concerned... we have a Center of Disability Services that brought in someone to explain the process and they also brought in the county clerks from every county surrounding this center. We learned what we need to do, what papers were needed and our county clerk provide any documents that we would need to take to a couple of doctors and she gave us the timeline of getting them back to her, she also set up the court date and provided us with the name of a lawyer for Sheila. We didn't feel we needed a lawyer because this meeting had prepared us. For us, it turned out to be an easy process because of the thorough preparation.
I'm a paralegal and, years ago, have worked on guardianships for adult disabled children. I'm happy to answer questions if you need anything. I know Texas law is different, but most things will be similar at least.
My daughter wasn't diagnosed until she was in her 20s, and did it without me involved, so I'm not very educated about the terminology. How do you explain an Autistic person who needs more or less support? More or less services in school? Accommodations in school or at work? I'm truly curious because I don't want to label someone just because I don't have the vocabulary.
This is beautiful and I needed to hear this. I totally agree with you. I don't ever want to see my child through a deficit lens or without leading with his strengths and gifts. However, I also think there are realistic needs to consider. I think where I get stuck is when adults with lower support needs are advocating to take services away from those who have different needs. We are also going through a limited conservatorship process. But there are advocates who would argue it is never appropriate. And that it is never appropriate for autistic people to want to live together in a home. Because that would be considered an institution. Even if it's a house embedded in the community and they want to live together. This is what doesn't make sense to me. The one-size-fits-all approach from those with fewer needs making decisions for others, and claiming to know they understand them better than their own parents.
“Dancing between weaving narratives of struggle to obtain services and wanting the world to see his whole, beautiful self,” that’s it right there. ❤️ I feel that.
Thank you for your words.
I want my son to be sovereign, and have decision-making power in his life. He’s brilliant. But people fail to comprehend that being intelligent doesn’t inoculate a person from extreme sensory overwhelm that can affect them in multiple ways, like disconnecting them from the ability to speak, or affecting how they need to move, or creating a trauma response like fight/flight/freeze that can grip them for days, or mean they don’t sleep with a stuffed toy. I feel like doctors and teachers and so on tend to use my son’s intelligence as a reason to assume my kid is willfully being difficult when he is simply in need of much more support and accommodation. I was surprised when his Autism diagnosis didn’t change their understanding much. The speaking kids get zero support. I had to pull him out of school because the stress was killing him.
And I see the non-speaking kids in these spaces treated as if they either aren’t able to understand what’s being said about them (I seriously doubt it!) or spoken to and treated like infants. They could be as intelligent as the teacher, for all we know, but as long as we measure intelligence by use of words, we’ll never know. We’ll forever underestimate and limit their potential for friendship, learning, self-advocacy, self-determination.
My wish is to see folks separate intelligence from speech, and to include everyone in everything they want to do, to provide the support and accommodation that makes that possible, speaking or not.
If I hadn't already offered, I can reach out to some folks in the spelling community who have been through the guardianship process.
You are saying some very similar things to what I said in an article I wrote in 1996. I'm thinking, title alone you will be able to relate to it.
She Ain't Broke! (so quit trying to fix her). It was about Deficit-Thinking vs Strength-based Thinking. I wrote it initially as an open letter to the preschool administrators, teachers and therapists when the sent home a 20 page IEP that was filled with "Sheila cannot do...."
My husband and I went through it with a red pen and crossed out all negative statements and turned them around to strength-based statements , "Sheila will be able to...." we placed a big red F on the front page and sent back another document and informed them we would not sign their IEP until it looked like our IEP.
They brought a mediator (school psychologist) in to work with them and us and well... lets just say, the mediator pointed out the benefits to using our approach with all children. I've now worked for that preschool 30+ years.
I am so sorry to hear families are still dealing with deficit-based thinking. It blocks the ability to really see the whole person.❤️
As far as guardianship is concerned... we have a Center of Disability Services that brought in someone to explain the process and they also brought in the county clerks from every county surrounding this center. We learned what we need to do, what papers were needed and our county clerk provide any documents that we would need to take to a couple of doctors and she gave us the timeline of getting them back to her, she also set up the court date and provided us with the name of a lawyer for Sheila. We didn't feel we needed a lawyer because this meeting had prepared us. For us, it turned out to be an easy process because of the thorough preparation.
I'm a paralegal and, years ago, have worked on guardianships for adult disabled children. I'm happy to answer questions if you need anything. I know Texas law is different, but most things will be similar at least.
My daughter wasn't diagnosed until she was in her 20s, and did it without me involved, so I'm not very educated about the terminology. How do you explain an Autistic person who needs more or less support? More or less services in school? Accommodations in school or at work? I'm truly curious because I don't want to label someone just because I don't have the vocabulary.
This is beautiful and I needed to hear this. I totally agree with you. I don't ever want to see my child through a deficit lens or without leading with his strengths and gifts. However, I also think there are realistic needs to consider. I think where I get stuck is when adults with lower support needs are advocating to take services away from those who have different needs. We are also going through a limited conservatorship process. But there are advocates who would argue it is never appropriate. And that it is never appropriate for autistic people to want to live together in a home. Because that would be considered an institution. Even if it's a house embedded in the community and they want to live together. This is what doesn't make sense to me. The one-size-fits-all approach from those with fewer needs making decisions for others, and claiming to know they understand them better than their own parents.
“Dancing between weaving narratives of struggle to obtain services and wanting the world to see his whole, beautiful self,” that’s it right there. ❤️ I feel that.
Thank you for your words.
I want my son to be sovereign, and have decision-making power in his life. He’s brilliant. But people fail to comprehend that being intelligent doesn’t inoculate a person from extreme sensory overwhelm that can affect them in multiple ways, like disconnecting them from the ability to speak, or affecting how they need to move, or creating a trauma response like fight/flight/freeze that can grip them for days, or mean they don’t sleep with a stuffed toy. I feel like doctors and teachers and so on tend to use my son’s intelligence as a reason to assume my kid is willfully being difficult when he is simply in need of much more support and accommodation. I was surprised when his Autism diagnosis didn’t change their understanding much. The speaking kids get zero support. I had to pull him out of school because the stress was killing him.
And I see the non-speaking kids in these spaces treated as if they either aren’t able to understand what’s being said about them (I seriously doubt it!) or spoken to and treated like infants. They could be as intelligent as the teacher, for all we know, but as long as we measure intelligence by use of words, we’ll never know. We’ll forever underestimate and limit their potential for friendship, learning, self-advocacy, self-determination.
My wish is to see folks separate intelligence from speech, and to include everyone in everything they want to do, to provide the support and accommodation that makes that possible, speaking or not.