A New School Year & Everything's Not Fine
SUMMARY KEYWORDS
child, iep, severe autism, sensory, son, brushes, notebook, educators, school, people, kid, called, therapy, find, behaviors, podcast, taught, comfortable, emergency, autism
SPEAKERS
Shannon (100%)
Hello, and welcome to The Parenting Severe Autism podcast. I'm your host, Shannon Chamberlin. I'm so happy that you're here with me today. Today I want to talk about school. School in this area has been in session for just about a month now. And when our child was in school, this is about the time that we started noticing that everything went from being fine to being not fine, and we didn't know what was going on, and it happened every year. So I thought maybe this would be a good time to talk about that.
When our son was younger, the sudden poor behaviors that started showing up, we realized were a direct result of just imitating examples set from other more aggressive kids in his class. They wore helmets, and they had self injurious behaviors, and he saw the attention that they received because of their behaviors. And we think that that's why he started doing them, because he was always jovial, he always loved school, he always loved all the people that would give him attention. But I think that he thought it may be that attention would be more fun, and he started just kind of throwing himself on the ground without a meltdown and just, you know, kind of faking it, really faking meltdowns and faking anger. And we addressed that by asking the educators to just move his line of sight to a different area. And in that classroom, they all sat at long tables, kind of like long picnic tables in the classroom. And so they would sit across from each other. And we just asked, instead of him being across from the children who have these behaviors, maybe he could be on the same side of the table and down the line a little bit. And that way, they're not in plain sight, and he's focused on other things, because he kind of does have blinders on when he's sitting in an area. And it did work, he stopped doing that, and that worked out great.
Now, as he got older, the teachers started slacking off on some of the IEP requirements that we had in place. Now, I know I have listeners all over the world, and I appreciate you all so much. But I don't know if you have IEP s. So here in the States, we have what's called an IEP. And it's an individual education plan. And that's what I'm referring to when I talk about that. In our son's IEP, we had everything just down to the minute details of how to have him have a good day. And this included things like having a pillow and blanket that he carries with him on the bus for the long bus ride to and from school. He mostly needed it in the morning, but he always had to have it and there was a monitor on the bus who would make sure that he had it before the bus would pull off. And that was when he was young and they cared. As he got older, everyone seemed to care less, but he still had the same needs.
And I think that's one of the biggest problems in school is that the educators and the monitors and the aides and the paras and all of those people expect that just because he's chronologically aging, he's maturing as well, and he's not. And so that's a huge disservice to these kids, because they're still - they're forever children, they always have these needs, they're not going to outgrow most of these needs just because they're getting older. And it's very hard to explain that to people for some reason. So I recommend first of all, having emergency IEP meetings as often as needed. I didn't even know that was possible until I found a parent advocate. Now, we just got lucky finding our parent advocate. She called herself a parent advocate, but you know, she's a child's advocate for autism. She ran - she still runs a nonprofit or autism teens in Wisconsin. And she taught us that you can have emergency IEP meetings called as often as you need to if these educators are not sticking with the program. She also taught me that -there was a term that she used in the IEP meetings, because she would show up - if this woman received the message that we scheduled an emergency IEP meeting, she would be there every single time. And that was amazing. And in the first meeting she ever came to she told them that our child has the right to a free and appropriate education. And I thought that was awesome. I was so busy always fighting for our son's right to just exist within a neurotypical world that there were some terminologies like that, that I wasn't aware of. And I thought that was great. We're now in Illinois, and education is not free, but he still has a right to an appropriate education. And he did get kicked out of school when he was 17, he's almost 22 now. He's supposed to be able to go to school until he's 22, but his behaviors were not welcomed and they never did find a placement for him. That's a completely different story. I've got a lot to share with you on that and it might help you but we won't talk about that today.
I think it's important to ensure that the school staff knows the difference between a mere suggestion in an IEP and parent law in an IEP. I call it parent law. Anything that makes my kid happy, comfortable and receptive to new information and new people is necessary. It's not a suggestion. All of those necessities go into the IEP. And if they are not being honored, we call an emergency IEP. This became a biweekly thing for us, unfortunately. And we have this one necessity that stood the test of time, since he was very small until the last day that he ever was able to attend school, we insisted on a notebook for communication. I know that I've talked about that before. And it really was the best motivation that anyone could have used for our son. It beats food, it beats technology, it beats activity for physical activity breaks, and it even could beat sensory breaks most of the time. A notebook for our child was a living, breathing report of everything that he did for the day, whether it was good and happy or bad and angry, or anything in between going by the hour, or by the class, by the subject, by the activity, by the person he's working with, it doesn't matter. Whatever he did, he knew that it was getting reported to us, he loved having good reports written in that notebook. And he also hated having bad reports written in that notebook. So why not use it? The teachers would not use it. As he got older, they just refuse to use it, they're too busy, or they don't think it works or something like that. And I can tell when he comes home, and he has, oh, Jacob had a great day. But in fact, he did not have a great day or he had an awesome day, and he did 20 awesome things, and they only wrote one time that he had a great day. And that's not enough, so... I consider the notebook to be the best alternative to food for motivation.
Now, also, if you agree that food is not healthy to use as a motivator - I don't care if it's apples, it's still not a healthy psychological motivator, I don't think - and if you agree with that, perhaps you can suggest that they give your child some physical activity breaks to release some of that tension in their joints that they undoubtedly have, maybe some sensory breaks, make sure they have plenty of sensory items on hand. So whatever it is, the bouncy seats or the little socks you can crawl into, or the dark tents that you can get into or the hanging swing thing or you know just some sensory boards with fidgets on it, just anything that makes your child happy, make sure they have that there. And also maybe see if they would consider giving more therapy hours, my child would only get 40 minutes a month between speech and OT. And I mean, he's severe autism. That, you know, he needs more than that. He needs more therapy than he needs any other subject. Okay, let's be honest, he's not gonna go get a job. He's not gonna go get a roommate, you know what I mean? He needs therapy to help him live life. He needs life skills. He needs that stuff. Yeah, he likes touch math. He likes storytime. But that's about it. So maybe consider that.
But really, I think that this time of year is the worst for our kids in school. Now first, remember, it is illegal for a school staff member to recommend or ask you to put your child on drugs if you're not comfortable with it. That is something that we've dealt with many times in the past. And you may have your child on pharmaceuticals, and these educators may think they're not working and they'll want to suggest other stuff. You stand your ground. You do what's comfortable for you and what you feel safe with for your child, it is completely illegal for them to ask you to do anything else. Now. Why do I think that this time of year is the worst for our kids in school? Because of Homecoming. So, we've got assemblies and pep rallies, right? When our child first entered freshman year, he was exposed to things like assemblies and pep rallies without our permission, and without his headphones. We actually had a teacher, I still can't believe it, but she told us in one of our emergency IEP meetings that "Well if you don't let him experience anything, he's never going to have any experiences", and my spouse said, "Okay, so when you take him without his headphones, or even with his headphones for this particular activity outside to go to the parade with the fire truck blaring by and the cop cars blaring by, and people throwing things like candy and objects, what are you going to do when my son is crawling underneath anything he can find covering his ears like he's going to die? What are you going to do? Is it that important to you that you expose my kid to an experience? Are you serious? You don't think that we take our kid places and give him a controlled experience as best as we can?"
And do not allow these people to snow you don't let them pull the wool over your eyes, make sure that if your child is not comfortable going to an assembly or even being in the hallway near the gymnasium where the assembly is taking place, they don't have to do it and make sure that if he if you guys aren't comfortable with the kid attending the homecoming parade without you to keep them safe in their eyes, that they don't do it. Make sure that this doesn't happen, because that's what's happening in these schools. I've seen it about five times, these teachers, they think they know better.
So... I try to keep these episodes short. I've got just about five minutes left, and I just I have some resources for you. One thing, I used to take my son to a CP cerebral palsy center for therapy in Green Bay, Wisconsin and the therapist there was fantastic. And she taught me about these little silicone skin brushes. There's an entire method on this. It's called the Wilbarger brushing protocol for occupational therapy for sensory brushing, which I'm not familiar with, believe it or not, but she taught me about 'em, and I've got some listed for you in the show notes. You can find some links there for different sized brushes. But these are used to desensitize our son, you rub them on the skin and it helps to take away some of the built up anxiety that inevitably happens from entering a new situation or a loud situation or something like that. But the key is to do it before the anxiety is there, believe it or not, just like if you're going to use essential oils for mood, you have to use them before the bad mood comes. Otherwise, every time the subject inhales the scent of the essential oil that you're trying to use to help them, all it does is trigger the bad feelings. So, same thing with the skin brushes, I'll have a link to them in my show notes. There's a couple of different ones that can be used. And it doesn't really matter which one, it's just what's best for you or your child to hold on to. My child won't do it for himself, I have to do it to him. But he does request it. And if he doesn't request it, I'll ask him and he'll say yes, yes, please, and that's what I do. So that's something that you can use, maybe prior to the bus ride or prior to something that's happening at school that makes the child uncomfortable.
And I want to say that I know it can be very difficult to find a parent advocate or child's advocate for autism. And we got lucky finding ours it was just happenstance. But she was amazing. And she taught me so much. And she did so much for our child. And if you are able to find one, I think it's worth a shot. So I did a quick Google search for you. I googled 'find a child's advocate for autism', and I found one thing called the American Advocacy Group. You can get a free consultation. They say if you're battling the school district and you need help call us for a free consultation. So that's great. That's exactly what most of us are doing. So their number is 877-762-0702. Free consultation with the American Advocacy Group for help battling the school district. And another one is an autism advocacy agencies listing by state, and that is a website you'll go to www.autism-pdd, like Papa - Delta -Delta.net, Autism-pdd.net - You should be able to find an advocacy agency listing by state. I was not able to find anything outside of the country because I don't really know what I'm looking for. But that's a start. Please remember to visit my podcast website at p s a, short for parenting severe autism, dot buzzsprout.com
psa.buzzsprout.com to access my show notes, and any products that I've recommended will also be on there. I think basically it's just going to be the skin brush for now. It's a really useful tool.
You're also welcome to send me an email because your story can also help others in our boat, and I would love to hear from you. You can share the story yourself as a guest on my podcast or you can tell me your story and I'll share it for you, whatever you're most comfortable with. You can send any communications to me to contact.parentingsevereautism@gmail.com
Or you could visit my Facebook page. And as I mentioned, I'm really not that great at keeping up with social media. I can't imagine why. But it is parenting severe autism podcast, and that is a page on Facebook. I do post every episode of my podcast on that page and you're welcome to like, comment, share anything right from there on that page. Also, feel free to buy me a coffee when you visit my Buzzsprout website, or I think even when you open any of my episodes, you can click on the 'support the show' link. It looks like a little coin with a heart on it and you can buy me a coffee for as little as $1. Please remember that a portion of the proceeds from the buy me a coffee program and from clicking on any of the products I have listed in my show notes will go towards helping severe autism families in need of safety and sensory items that they cannot afford otherwise. That is part of our mission here. I thank you for your support. And also, I love coffee!
So, we're out of time for today. I hope that you can have a great week and maybe some of this stuff will help you fight that battle at school. I know you're having trouble. There's so much more that I will address about experiences with school districts and everyone involved in future episodes. We'll talk about all that. Thank you so much for listening. You hang in there. You're a superhero
