I haven't really written about the end of the school year for Jack, or expressed my thoughts about the over all experience this year so I thought I would take a few minutes to do that.
I sat down this evening and really went through everything the teacher sent home with Jack on his last day of school- you know everything they can find that has his name on it- locker label, book marks, pencils, all that good stuff. Except I found what I consider to be a treasure. The results of Jack's Assistive Technology Evaluation.
The evaluation states that Jack needs an AT device- in the form of supplementary aids, services, program modifications and supports. He is to have daily keyboarding practice, he will be provided something call Pixwriter software which utilizes pictures to develop written work, and it will be made available for home use as well for homework as needed. The school is to ensure that Jack has computer access in all classroom settings; he will be provided with worksheets in a digital format as needed so he can type his answers.
Well then, that's just AWESOME!!!! Another school victory.
In my first "big kid" IEP meeting at the end of pre-K last year, I was quite overwhelmed. Many people were talking "at" me and telling me "what my son needed". And it wasn't much- it made me really nervous. For his severe fine motor deficits he would have a pencil grip? a slant board? a lunch buddy? That hardly seemed adequate. The time with the special educator seemed very limited, OT assistance as well. And no aid. But in my eyes, at that point, these were the experts on what my child needed in school, so I accepted their "recommendations" and we moved on to kindergarten.
Man was I wrong. Man were THEY wrong.
It's often said that as a mom you are the expert on your child. And of course this is true, there is no other human on earth who knows your child as well as you do. I have fully accepted that for quite awhile now. However, when we transitioned to the school setting, I guess I felt like the teachers would be the experts on my child in this arena, they are the ones watching him learn at school and seeing the areas in which he struggles. I still believe this to be so to a certain extent- Jack's teacher this past year was certainly very aware and communicative regarding his struggles. What I learned though, is that unfortunately, in the school's eyes, the only people who can really stand up and argue that "hey this isn't enough for my son" are his parents. Jack's teacher could tell everyone and their brother that Jack needed more help, but until it came from me (and the advocate), nothing changed. I believe this is also a legal issue, goodness knows I had to sign a consent every time they evaluated Jack for anything, but it makes me sad that the teacher who is with my son in this setting every single day is not given the power to advocate for what they believe him to need. Or at least, they don't get results. I hate to say it, but it's also a money issue- with limited funding for special education, the parent really has to shove their foot in the door and refuse to move it until the appropriate changes are made. I was shocked the first time the advocate we worked with said to the administrators something like "just to be sure, you do have adequate documentation to get funding for additional support for Jack right?" That's why I was getting letters from his OT, pediatrician and developmental pediatrician recommending interventions. Not because the school didn't already know what he needed, but because the people who dole out the funding needed "documentation". There is a fundamental problem here- shouldn't the educators' recommendations be trusted? Isn't that why they are there? Because they are able to assess these things? Apparently not.
To many of you who have children older than mine, this is likely old hat. However I have made several friends and have plenty of readers who have much younger children with autism. To you I say this- learn from my mistakes and misconceptions. In every area of life YOU are the expert on your child. Even if you believe that your child's teacher knows what his best for him/her, YOU have to ask for it. Demand it. Because it is not just what your child deserves, it is their RIGHT.
Had I let things remain at the status quo for Jack this year, he would be having an hour of special education a week, which was actually time with an aid, not the educator. He would not be in speech. He would not have been evaluated by the alternative technology team. I do believe that through his updated evaluations, he would have received further aid support, reading assistance, and math accommodations. That being said, they weren't even planning on doing either the speech or assistive technology evaluations. But because I requested this, and made a good case for each, Jack now has speech twice a week, and is going to be provided with technology that will assist him in generating his own work instead of relying on a scribe and hoping his handwriting becomes legible, someday. I mean, he's been in OT since he was 3- the bottom line is that he's not ready to write. You can't force that, you just can't.
I am not trying to toot my own horn, I am by no means an IEP expert. I do believe that I am an experienced autism mom at this point though and I want to empower other autism parents who are struggling or just starting on this journey. Sometimes I can't believe how far we have come this year. When Jack starts first grade, the school will be well prepared for his needs, and I will feel confident that all issues are being adequately addressed. Not half bad for a year's work!!
I sat down this evening and really went through everything the teacher sent home with Jack on his last day of school- you know everything they can find that has his name on it- locker label, book marks, pencils, all that good stuff. Except I found what I consider to be a treasure. The results of Jack's Assistive Technology Evaluation.
The evaluation states that Jack needs an AT device- in the form of supplementary aids, services, program modifications and supports. He is to have daily keyboarding practice, he will be provided something call Pixwriter software which utilizes pictures to develop written work, and it will be made available for home use as well for homework as needed. The school is to ensure that Jack has computer access in all classroom settings; he will be provided with worksheets in a digital format as needed so he can type his answers.
Well then, that's just AWESOME!!!! Another school victory.
In my first "big kid" IEP meeting at the end of pre-K last year, I was quite overwhelmed. Many people were talking "at" me and telling me "what my son needed". And it wasn't much- it made me really nervous. For his severe fine motor deficits he would have a pencil grip? a slant board? a lunch buddy? That hardly seemed adequate. The time with the special educator seemed very limited, OT assistance as well. And no aid. But in my eyes, at that point, these were the experts on what my child needed in school, so I accepted their "recommendations" and we moved on to kindergarten.
Man was I wrong. Man were THEY wrong.
It's often said that as a mom you are the expert on your child. And of course this is true, there is no other human on earth who knows your child as well as you do. I have fully accepted that for quite awhile now. However, when we transitioned to the school setting, I guess I felt like the teachers would be the experts on my child in this arena, they are the ones watching him learn at school and seeing the areas in which he struggles. I still believe this to be so to a certain extent- Jack's teacher this past year was certainly very aware and communicative regarding his struggles. What I learned though, is that unfortunately, in the school's eyes, the only people who can really stand up and argue that "hey this isn't enough for my son" are his parents. Jack's teacher could tell everyone and their brother that Jack needed more help, but until it came from me (and the advocate), nothing changed. I believe this is also a legal issue, goodness knows I had to sign a consent every time they evaluated Jack for anything, but it makes me sad that the teacher who is with my son in this setting every single day is not given the power to advocate for what they believe him to need. Or at least, they don't get results. I hate to say it, but it's also a money issue- with limited funding for special education, the parent really has to shove their foot in the door and refuse to move it until the appropriate changes are made. I was shocked the first time the advocate we worked with said to the administrators something like "just to be sure, you do have adequate documentation to get funding for additional support for Jack right?" That's why I was getting letters from his OT, pediatrician and developmental pediatrician recommending interventions. Not because the school didn't already know what he needed, but because the people who dole out the funding needed "documentation". There is a fundamental problem here- shouldn't the educators' recommendations be trusted? Isn't that why they are there? Because they are able to assess these things? Apparently not.
To many of you who have children older than mine, this is likely old hat. However I have made several friends and have plenty of readers who have much younger children with autism. To you I say this- learn from my mistakes and misconceptions. In every area of life YOU are the expert on your child. Even if you believe that your child's teacher knows what his best for him/her, YOU have to ask for it. Demand it. Because it is not just what your child deserves, it is their RIGHT.
Had I let things remain at the status quo for Jack this year, he would be having an hour of special education a week, which was actually time with an aid, not the educator. He would not be in speech. He would not have been evaluated by the alternative technology team. I do believe that through his updated evaluations, he would have received further aid support, reading assistance, and math accommodations. That being said, they weren't even planning on doing either the speech or assistive technology evaluations. But because I requested this, and made a good case for each, Jack now has speech twice a week, and is going to be provided with technology that will assist him in generating his own work instead of relying on a scribe and hoping his handwriting becomes legible, someday. I mean, he's been in OT since he was 3- the bottom line is that he's not ready to write. You can't force that, you just can't.
I am not trying to toot my own horn, I am by no means an IEP expert. I do believe that I am an experienced autism mom at this point though and I want to empower other autism parents who are struggling or just starting on this journey. Sometimes I can't believe how far we have come this year. When Jack starts first grade, the school will be well prepared for his needs, and I will feel confident that all issues are being adequately addressed. Not half bad for a year's work!!
Thank you for all that you have done for Jack.
ReplyDeleteYou have learned a lot! bdime7@gmail.com