We had a tough week too. I spent the weekend watching a webinar on interoception. (Highly recommend Kelly Mahler's classes if/when you have time.) And I have 5 doctors to call today. It's a full time job some days, and I worry one of the only things that will really help is time, although it feels like torture. Thanks for sharing your experience with the medication. We are considering our options and it feels scary.
Oh honey. It really is a full-time job, and not a fun one. Sometimes it feels completely crazy making, and my wife and I take turns calling the millions of doctors who all tell us they don't take our insurance for that there's a 6-month waiting list for an assessment when my 5 year old is in crisis today. I'm happy to talk about medication if you'd like! I also find it scary, especially when they're so little. I'm trying to remember how much anxiety medication has improved my own life and how much I actually missed out on growing up because I didn't get them until healthcare that I needed as a young person. That kind of stuff, alongside the guidance and judgment of the many professionals on our care team, really grounds me and helps me get through the scaryness.
Also, thank you for the webinar rec! I will definitely check it out -- a recommendation from you is high praise:):)
I have also been there. I just decided today to drop one day of work each week because I need that time to schedule and attend doctor appointments for me and my two neurodivergent kids. It seriously takes so much time! I did a deep dive on the clinical research before starting my son on meds when he was seven. In case he ever got mad at me about it later, I wanted to be able to say that I had looked at it long and hard and made the best choice I could with the information that was available. He went from threatening to throw himself out the window and having meltdowns on a regular basis to being able to happily exist most days. He is nine now and has only had one other episode of threatening to throw himself out a window since we started meds, whereas before it was happening weekly. It genuinely seems like it has made his life better, as well as ours. There is a lot of stigma about medicating kids but there really are measurable benefits, too.
Also just wanted to add we went from 6 hour kinder to 3 hour kinder two years ago and it was such a blow. It was the right thing to do but it meant I got basically no time to work. I’m still recovering from that! Good luck with the new schedule! I hope it helps!!!
Thank you for sharing that Diana! That is amazing to hear. From what I’ve read, there’s a lot of trial and error and medication makes a dramatic difference for some people and not others. It’s great that you found something that makes such a difference!!!
When our son is dysregulated it appears like he is super silly. It doesn’t look like dysregulation at first glance. But then you realize he can’t get out of it, he’s been in this intense state for hours, he can’t learn, and it’s really a distress signal, even though it doesn’t read like that to most people. It’s hard to hold all those truths and make sense of them! We are trying to do what is right. Like all parents! Maybe the stigma will subside as more people grow up and can say this made a real difference for me. 🤞
There was some trial and error when we first started meds. We ended up landing on a low dose of extended release Ritalin. One thing we have struggled with is teachers pushing to increase his dose so that he will sit still in a chair instead of just letting him stand or sit on a wobble stool or move around and fidget. He had a fantastic teacher last year who also had ADHD, so she got it and he mmade amazing progress in her class because she wasn't trying to force him into a box of behaving like a traditionally "good" student. Thankfully he has a great teacher again this year who also has a kid with ADHD, so she also gets it. Phew! Can you share the link to the webinar on interception? Both of my kids struggle with it in different ways and I would love to have that resource.
Yes! I’ve been nudging the school to try to include autistic adults in the conversation or in the daily routine there, but that feels like a bridge too far for them I think. They’ve been very accommodating but there’s no doubt they’re taking a neurotypical, compliance based approach. It’s hard not to when it’s so soaked into our culture!
This is the workshop I just took. I’ve taken a couple others and found them helpful too. She’s good at making abstract concepts understandable. Much of it is about shifting your perspective, which I do find helpful, and there are also practical suggestions too. https://www.kelly-mahler.com/product/course-replay-the-5-keys-to-behavior-regulation/
Thank you for the link! Yes, I've had to become an expert in gently but firmly advocating for my kids, walking that line of trying to maintain the relationship with the teachers while also telling them they need to change their approach. It has been a challenge, especially with older teachers, to get them to reframe their understanding of success, not as masking and conforming to neurotypical expectations, but getting the work done in his own style.
We had a tough week too. I spent the weekend watching a webinar on interoception. (Highly recommend Kelly Mahler's classes if/when you have time.) And I have 5 doctors to call today. It's a full time job some days, and I worry one of the only things that will really help is time, although it feels like torture. Thanks for sharing your experience with the medication. We are considering our options and it feels scary.
Oh honey. It really is a full-time job, and not a fun one. Sometimes it feels completely crazy making, and my wife and I take turns calling the millions of doctors who all tell us they don't take our insurance for that there's a 6-month waiting list for an assessment when my 5 year old is in crisis today. I'm happy to talk about medication if you'd like! I also find it scary, especially when they're so little. I'm trying to remember how much anxiety medication has improved my own life and how much I actually missed out on growing up because I didn't get them until healthcare that I needed as a young person. That kind of stuff, alongside the guidance and judgment of the many professionals on our care team, really grounds me and helps me get through the scaryness.
Also, thank you for the webinar rec! I will definitely check it out -- a recommendation from you is high praise:):)
Might take you up on that re medication when we learn more! Thank you!!
I have also been there. I just decided today to drop one day of work each week because I need that time to schedule and attend doctor appointments for me and my two neurodivergent kids. It seriously takes so much time! I did a deep dive on the clinical research before starting my son on meds when he was seven. In case he ever got mad at me about it later, I wanted to be able to say that I had looked at it long and hard and made the best choice I could with the information that was available. He went from threatening to throw himself out the window and having meltdowns on a regular basis to being able to happily exist most days. He is nine now and has only had one other episode of threatening to throw himself out a window since we started meds, whereas before it was happening weekly. It genuinely seems like it has made his life better, as well as ours. There is a lot of stigma about medicating kids but there really are measurable benefits, too.
Also just wanted to add we went from 6 hour kinder to 3 hour kinder two years ago and it was such a blow. It was the right thing to do but it meant I got basically no time to work. I’m still recovering from that! Good luck with the new schedule! I hope it helps!!!
Thank you for sharing that Diana! That is amazing to hear. From what I’ve read, there’s a lot of trial and error and medication makes a dramatic difference for some people and not others. It’s great that you found something that makes such a difference!!!
When our son is dysregulated it appears like he is super silly. It doesn’t look like dysregulation at first glance. But then you realize he can’t get out of it, he’s been in this intense state for hours, he can’t learn, and it’s really a distress signal, even though it doesn’t read like that to most people. It’s hard to hold all those truths and make sense of them! We are trying to do what is right. Like all parents! Maybe the stigma will subside as more people grow up and can say this made a real difference for me. 🤞
There was some trial and error when we first started meds. We ended up landing on a low dose of extended release Ritalin. One thing we have struggled with is teachers pushing to increase his dose so that he will sit still in a chair instead of just letting him stand or sit on a wobble stool or move around and fidget. He had a fantastic teacher last year who also had ADHD, so she got it and he mmade amazing progress in her class because she wasn't trying to force him into a box of behaving like a traditionally "good" student. Thankfully he has a great teacher again this year who also has a kid with ADHD, so she also gets it. Phew! Can you share the link to the webinar on interception? Both of my kids struggle with it in different ways and I would love to have that resource.
Yes! I’ve been nudging the school to try to include autistic adults in the conversation or in the daily routine there, but that feels like a bridge too far for them I think. They’ve been very accommodating but there’s no doubt they’re taking a neurotypical, compliance based approach. It’s hard not to when it’s so soaked into our culture!
This is the workshop I just took. I’ve taken a couple others and found them helpful too. She’s good at making abstract concepts understandable. Much of it is about shifting your perspective, which I do find helpful, and there are also practical suggestions too. https://www.kelly-mahler.com/product/course-replay-the-5-keys-to-behavior-regulation/
Thank you for the link! Yes, I've had to become an expert in gently but firmly advocating for my kids, walking that line of trying to maintain the relationship with the teachers while also telling them they need to change their approach. It has been a challenge, especially with older teachers, to get them to reframe their understanding of success, not as masking and conforming to neurotypical expectations, but getting the work done in his own style.
It’s good to know you’re out there!!!