Post by helpshareplease on May 11, 2023 8:40:31 GMT -5
So last year was a shit show trying to get the Ipad & lamps app set up. This year I got my letter of justification, verification of need form, got special kids quote, sent to the company, All within about 4 days. SO much easier this go around. I'm very excited for the stuff that we are ordering. Most expensive was the crash pad holy hell those things are pricey. But I know she will use it. Hopefully this summer we will have tools to cope better.
regencygirl , so this is typical for kids that are not special needs also. I too have found myself hosting way more and then never being invited over to their house. The neighbors used to foist their kids on us (outside only to make it easier for us), but due to the ages, I felt I still needed to loosely supervise. Now, they are finally old enough that I no longer need to supervise- hooray! But anytime I sent the kids down to their house (outside), they mysteriously ended up back in my direction. One time was at the parent request because they had stuff in their yard. Um hello, you have a street they can play in and an alley behind your garage, please entertain my kids. And in other areas of my life, I felt I had to take more initiative. During the pandemic, these neighbors did invite us to the park fairly often but not their house, and they did have a neighbor party, so I appreciate there is some reciprocity just far far less frequent.
Part of it, I decided was my issue, so I backed off hosting as much. Part of it is people's personalities, and in our case a rural versus suburb experience. Here in the suburbs everyone is back to activities and most seem to prefer that to hosting one on one in their home. My kids basically only socialize with the neighbors outside and we are lucky to live in an area with kids. But outside of that, there are some parties, but no invites to "hang out". I've decided I am OK with that for now because the neighborhood thing is super easy. I know one parent will take a kid to an activity. No one else really has offered to do that, and I am like so how does my kid become friends with your kid?
I am not trying to minimize your feelings. Because I have very often felt them too. Very often, since I am a person that values reciprocity highly. I have found some friends just totally disappeared, and I am trying to lower my interaction with them to match their completely minimal effort. It's just very annoying to constantly be the person putting in effort when you hear crickets from everyone else. And devaluating.
I am appreciative though that with the pandemic progression that some social activities are back that weren't there before. So I am just trying to concentrate on what we do have on the calendar because it's a lot with the end of the year stuff. Summer is more of a struggle, but we'll see how that goes. Some people seem to travel all summer and completely disappear.
regencygirl I also am struggling with that hard right now. Ds (almost 11) is in baseball and scouts. He has really no close friends and the ones we interact with, his behavior is horrible to them. He wants a bday party this summer and I’m like honestly who would we invite and who would even come? It’s so sad. He’s had a rough week at school and I’m just at the end of what I can do. We met with a new NP last week and have been adjusting meds, not sure if that’s why he’s gotten worse than normal behavior or if it’s the end of the school year nonsense. I just don’t know but it makes me sad to know he doesn’t really have friends we could invite to a party and come over.
It’s even worse since my younger son is having a party and inviting his classmates.
On the topic above, ds1 is diagnosed with ASD, adhd and anxiety. Currently trying to change up his meds and seeing a new NP. She also referred me to a new neurodevelopment center that weirdly is not busy yet, I have an intake appt this week to see what they can offer. I was nearly in tears last night after 2 days of school behavior issues plus issues at his scout meeting last night. It’s just never ending. I don’t know how to even help but feel like I’m doing everything I can and just barely staying above water. He starts summer camp (day camp) soon and they are really good about helping him cool off, etc, giving him space but if his behaviors are increasing who knows how that will go. Ughhhhhhhhhhh this is all so stressful.
Post by pinkdutchtulips on May 11, 2023 11:22:30 GMT -5
Miss R went to school for the first time in 6 days today! The other 6 she missed bc her meds messed w her cycle and she didn't want to leak at school (3 days) and then the other 3 bc she was too tired (my guess sadly is insomnia from her meds).
I sent a message into her pedi letting her know what side effects we're experiencing and that we haven't noticed any changes other than a slight decrease in appetite (not that big of a deal and a side effect she was looking forward to), increased flow, and insomnia so I was wondering if an increased dosage would help. The first response I got was from the most UNHELPFUL RN/LC who suggested a change in diet, establishing routines, more exercise !! and that should work. Uh no, its painfully obvious you haven't met my kid bc if you had, you would know that NONE of those things are going to help a kid w ADHD AND ODD & DMDD. Thankfully a MD chimed in that we can increase the dosage and if the insomnia remains then add a low dose sleeping pill.
I'm also going through her IEP to formulate my request to the district for an IEE to be completed over the summer. It's painfully obvious that only her academic issues were thoroughly evaluated and assessed and the behaviors that are largely responsible for her school & classwork refusal issues and refusal to respond to authority figures was ignored. If we want her in school, we need to get to the root of WHY she refuses to go. Is it ODD (explains the refusal to follow school/classroom rules and refusal to comply w requests of teachers and administrators) or DMDD (inability to regulate her emotions).
My younger daughter has always struggled with sleep (super common in kids with ADHD, even when they aren't medicated because their brains keep them awake). I really wish we had gone to the neurologist sooner instead of waiting until 8. There was so much bad press about kids and sleep meds, but they didn't even use actual sleep meds like Ambien or whatever. The neurologist put her on hydroxyzine (older antihistamine) and clonidine (drops blood pressure) to get her to fall and stay asleep. We tried extended release melatonin first and cyproheptadine (another antihistamine) alone and hydroxyzine alone before settling on the combo. She does so much better with solid sleep.
My older daughter had trouble sleeping until her anxiety was under control as well, and I wish we had gone to the neurologist with her too.
She also has a rough time with her cycle, and a lot of it is due to nausea and getting dehydrated. Her Pedi prescribed zofran as needed and recommended extra water and ibuprofen before her period even starts, and it's helped. I hope you can figure out something for future months because that is awful.
I hope you get the IEE. I know school avoidance is a huge problem and the last thing you want to deal with in the summer, but you can also investigate extended school year services if she has an IEP. Especially since they've failed her so much and she's at risk for more backsliding during the break. Schools don't like to do it, but they obviously aren't meeting her needs. I can't remember if they did a functional behavioral assessment and BIP to come up with a better plan than just suspending her all the time.
I apologize if I missed this, but was she also evaluated for ASD? There's so much overlap between everything like you said that it's hard to tease out the individual issues and address them.
My son has ADHD and DMDD (7) and went about a month with any referrals, but he eloped recess the other day when he was upset and climbed a tree and wouldn’t come down for the principal. He finally came down after a few more adults were called for support.
I haven’t had any issues filling his prescriptions so far even though one of his meds is Adderall. He has the generic capsule form and so far we haven’t had problems. But the pharmacist said doctors have moved from tablet to capsule now to avoid the shortage. Today was the first time I’ve had an issue and honestly I’m just so scared.
I’m scared about regression when we finally we on a good roll.
We do have a BIP in place not so much to address her suspension issues but her staying in the classroom issues. The problem we're running into is that successful application of her BIP hinges entirely on her particpation. She has yet to actively participate in anything the last 3 years regarding her education. If she doesn't attend school how are they to see if the IEP and BIPs even work ?!? Today is day 10 of active school refusal w/ honestly no end in sight. We have an IEP meeting set for late May to discuss the transistion to HS. HS scares me bc she is NOT academically ready or prepared for HS in any way, shape, or form.
We have yet to have her evaluated for ASD. That's a $4k neuropsyche eval and there's a 6-9 month wait list. I'm looking at outpatient programs for the summer in the hopes that maybe we can get a handle on things before school starts.
I'm so sorry. It's so incredibly frustrating. I know you've said before how counterproductive it is for them to suspend her when the major issue is school refusal. It seems like suspension shouldn't even be an option in her case.
I was actually wondering if the school evaluated her for an educational classification of autism (you don't need the medical diagnosis first). At least you could get some data from that. And even if she had a medical diagnosis, the school would still need to do the educational classification.
We do have a BIP in place not so much to address her suspension issues but her staying in the classroom issues. The problem we're running into is that successful application of her BIP hinges entirely on her particpation. She has yet to actively participate in anything the last 3 years regarding her education. If she doesn't attend school how are they to see if the IEP and BIPs even work ?!? Today is day 10 of active school refusal w/ honestly no end in sight. We have an IEP meeting set for late May to discuss the transistion to HS. HS scares me bc she is NOT academically ready or prepared for HS in any way, shape, or form.
We have yet to have her evaluated for ASD. That's a $4k neuropsyche eval and there's a 6-9 month wait list. I'm looking at outpatient programs for the summer in the hopes that maybe we can get a handle on things before school starts.
I’ve been following your story. I’m sorry, it sounds SO incredibly frustrating. Can ASD only be diagnosed by neuro psych?
Ok douche, go ahead and call it mud. My husband DID have halitosis. We addressed it after I talked to you girls on here and guess what? Years later, no problem. Mofongo, you're a cunt. Eat shit. ~anonnamus
I’ve been following your story. I’m sorry, it sounds SO incredibly frustrating. Can ASD only be diagnosed by neuro psych?
It can be diagnosed by several types of specialists (developmental pedi, neuropsychologist, psychiatrist, pediatric neurologist, child psychologist), but it usually requires a lot of time-intensive testing and some of it often isn't covered by insurance if they deem it as an "educational" vs. medical (like cognitive testing). Or the provider doesn't take insurance. But it's hard to get an accurate diagnosis of whatever is going on without a really comprehensive evaluation, especially in girls or when there are comorbidities like ADHD, etc.
I’ve been following your story. I’m sorry, it sounds SO incredibly frustrating. Can ASD only be diagnosed by neuro psych?
It can be diagnosed by several types of specialists (developmental pedi, neuropsychologist, psychiatrist, pediatric neurologist, child psychologist), but it usually requires a lot of time-intensive testing and some of it often isn't covered by insurance if they deem it as an "educational" vs. medical (like cognitive testing). Or the provider doesn't take insurance. But it's hard to get an accurate diagnosis of whatever is going on without a really comprehensive evaluation, especially in girls or when there are comorbidities like ADHD, etc.
Thank you! Big hugs to all of you dealing with these things!!
Ok douche, go ahead and call it mud. My husband DID have halitosis. We addressed it after I talked to you girls on here and guess what? Years later, no problem. Mofongo, you're a cunt. Eat shit. ~anonnamus
mofongo, in addition to what raleighnc said, a child’s age is a factor. It’s harder to get evaluations and diagnoses for older kids because there are more resources in early intervention.. It was far easier to have DS evaluated between 3-5 than our oldest at 11.
Our 11 yo is struggling and I suspect ASD and/or a learning disability. School won’t evaluate because their standardized test scores are above average.
Post by karinothing on May 17, 2023 8:25:17 GMT -5
I think this is my first time posting in here. DS2 was diagnosed with ADHD earlier this year and we have been on medication for about a month. Things are really going well in school and he seems happier and has started to form better friendships. He actually has had friends over for playdates! The first few days he was on the meds I didn't tell his teachers and he came home with letters about how amazing his behavior was AND the school has sent home work where he answered all the questions and wrote paragraphs, something that he has never done (normally work comes home blank).
All that being said, he is on a gymnastics team. He didn't move up to the next level and at first I was kind of shocked because his skills surpass all the other kids that do move up. So I figured it had something to do with emotional skills. His coaches confirmed that they don't think he can handle the pressure associated with the next level. They have said he has improved the past month (so since he started meds) but he still has some struggles with emotional regulation in class. And yesterday he got upset because he told me he kept getting distracted and couldn't remember what he had to do (then it gets pointed out by the coach and he gets down on himself and crawls into a ball). I don't think the coaches say anything worse than "I asked you to do this" or "remember we are supposed to be doing..." but I think he feels bad about it. We have an psych appt today so I am going to talk to them about a booster dose for the afternoon. I hate the idea that he can't do something he loves (and gymnastics has been the ONLY thing he has ever been passionate about) becuase his ADHD is getting in the way.
I think this is my first time posting in here. DS2 was diagnosed with ADHD earlier this year and we have been on medication for about a month. Things are really going well in school and he seems happier and has started to form better friendships. He actually has had friends over for playdates! The first few days he was on the meds I didn't tell his teachers and he came home with letters about how amazing his behavior was AND the school has sent home work where he answered all the questions and wrote paragraphs, something that he has never done (normally work comes home blank).
All that being said, he is on a gymnastics team. He didn't move up to the next level and at first I was kind of shocked because his skills surpass all the other kids that do move up. So I figured it had something to do with emotional skills. His coaches confirmed that they don't think he can handle the pressure associated with the next level. They have said he has improved the past month (so since he started meds) but he still has some struggles with emotional regulation in class. And yesterday he got upset because he told me he kept getting distracted and couldn't remember what he had to do (then it gets pointed out by the coach and he gets down on himself and crawls into a ball). I don't think the coaches say anything worse than "I asked you to do this" or "remember we are supposed to be doing..." but I think he feels bad about it. We have an psych appt today so I am going to talk to them about a booster dose for the afternoon. I hate the idea that he can't do something he loves (and gymnastics has been the ONLY thing he has ever been passionate about) becuase his ADHD is getting in the way.
I'm so glad that things are going well! Your son sounds like my older daughter coming home with blank work. I'm glad we started meds in elementary school because it's a lot easier for her to have better relationships with her peers when she's not blurting out and interrupting constantly. Middle school would have been rough.
Afternoons/evenings are hard emotionally when the meds are wearing off. We had a lot of meltdowns because DD1 would get super upset anytime I had to redirect her because it felt like I was yelling at her. DD1 apparently metabolizes meds super fast, and even though we finally found one that covers her for about 11 hours, she goes to school so early now that it's basically gone by 5pm. So we have a booster dose on days when she has a lot of homework or projects or a late activity. It definitely helps, so good for you for pursuing it. We had to play around with the timing a bit to make sure she sleeps (she takes it as soon as she gets home from school at 3), but I knew there were options to help her fall asleep if we needed to go that route.
I think this is my first time posting in here. DS2 was diagnosed with ADHD earlier this year and we have been on medication for about a month. Things are really going well in school and he seems happier and has started to form better friendships. He actually has had friends over for playdates! The first few days he was on the meds I didn't tell his teachers and he came home with letters about how amazing his behavior was AND the school has sent home work where he answered all the questions and wrote paragraphs, something that he has never done (normally work comes home blank).
All that being said, he is on a gymnastics team. He didn't move up to the next level and at first I was kind of shocked because his skills surpass all the other kids that do move up. So I figured it had something to do with emotional skills. His coaches confirmed that they don't think he can handle the pressure associated with the next level. They have said he has improved the past month (so since he started meds) but he still has some struggles with emotional regulation in class. And yesterday he got upset because he told me he kept getting distracted and couldn't remember what he had to do (then it gets pointed out by the coach and he gets down on himself and crawls into a ball). I don't think the coaches say anything worse than "I asked you to do this" or "remember we are supposed to be doing..." but I think he feels bad about it. We have an psych appt today so I am going to talk to them about a booster dose for the afternoon. I hate the idea that he can't do something he loves (and gymnastics has been the ONLY thing he has ever been passionate about) becuase his ADHD is getting in the way.
I'm so glad that things are going well! Your son sounds like my older daughter coming home with blank work. I'm glad we started meds in elementary school because it's a lot easier for her to have better relationships with her peers when she's not blurting out and interrupting constantly. Middle school would have been rough.
Afternoons/evenings are hard emotionally when the meds are wearing off. We had a lot of meltdowns because DD1 would get super upset anytime I had to redirect her because it felt like I was yelling at her. DD1 apparently metabolizes meds super fast, and even though we finally found one that covers her for about 11 hours, she goes to school so early now that it's basically gone by 5pm. So we have a booster dose on days when she has a lot of homework or projects or a late activity. It definitely helps, so good for you for pursuing it. We had to play around with the timing a bit to make sure she sleeps (she takes it as soon as she gets home from school at 3), but I knew there were options to help her fall asleep if we needed to go that route.
Thank you. Yes, he takes his initial med at 7am and practice starts at 4pm (6pm in the summer) so I imagine it is worn off. He can't exactly figure it out himself yet (he is on a very low dose) but I can tell he gets a bit more frustrated in the afternoon than he would otherwise. That is interest you mention the thing about redirection because that is 100% how DS is. His coaches mentioned that they can't correct him because he just gets upset and shuts down. He likely feels they are yelling (and they aren't because I stay and watch lol). But he internalizes it.
I am not sure his Dr will be willing to do it. She was kind of a hard sell for medication to begin with even though our Psychologist was talking to her and we did extensive neuropsych testing. I think because his isn't overly hyperactive/impulsive and his issue more result in emotional dysregulation and shut down (which his therapist refers to as demand overload). But the psychiatrist just sees this quiet kid and the problem isn't obvious. But hopefully she is willing to listen.
I'm so glad that things are going well! Your son sounds like my older daughter coming home with blank work. I'm glad we started meds in elementary school because it's a lot easier for her to have better relationships with her peers when she's not blurting out and interrupting constantly. Middle school would have been rough.
Afternoons/evenings are hard emotionally when the meds are wearing off. We had a lot of meltdowns because DD1 would get super upset anytime I had to redirect her because it felt like I was yelling at her. DD1 apparently metabolizes meds super fast, and even though we finally found one that covers her for about 11 hours, she goes to school so early now that it's basically gone by 5pm. So we have a booster dose on days when she has a lot of homework or projects or a late activity. It definitely helps, so good for you for pursuing it. We had to play around with the timing a bit to make sure she sleeps (she takes it as soon as she gets home from school at 3), but I knew there were options to help her fall asleep if we needed to go that route.
Thank you. Yes, he takes his initial med at 7am and practice starts at 4pm (6pm in the summer) so I imagine it is worn off. He can't exactly figure it out himself yet (he is on a very low dose) but I can tell he gets a bit more frustrated in the afternoon than he would otherwise. That is interest you mention the thing about redirection because that is 100% how DS is. His coaches mentioned that they can't correct him because he just gets upset and shuts down. He likely feels they are yelling (and they aren't because I stay and watch lol). But he internalizes it.
I am not sure his Dr will be willing to do it. She was kind of a hard sell for medication to begin with even though our Psychologist was talking to her and we did extensive neuropsych testing. I think because his isn't overly hyperactive/impulsive and his issue more result in emotional dysregulation and shut down (which his therapist refers to as demand overload). But the psychiatrist just sees this quiet kid and the problem isn't obvious. But hopefully she is willing to listen.
That's super frustrating that a psychiatrist is a hard sell. Of all people, she should know that kids mask and are different in office vs in school or at home and the inattentive/dysregulation kids need just as much help as the hyperactive ones. If she gives you a hard time, I would start casually looking for another provider/getting on a wait list because in my experience, kids with ADHD need to try so many different options and change things up when they aren't working. If your provider isn't going to help you find the best treatment for your kid in the first few months of medication, it's going to be a long 10+ years of you pushing the doctor to listen. And a lot of unnecessary stress and pain for your son.
We've been lucky that our pedi and then the psychiatrist have been very proactive and believe us/the kids when we describe the experiences with each me. My older daughter was on several extended-release methylphenidate versions, and none of them worked long enough so we just did immediate-release three times a day (which sucked because she basically had three crashes a day instead of one). Then a new med came on the market that is delayed/extended release. It doesn't start releasing until it's in the large intestine, and for some reason, that allows it to last a lot longer for her (and it starts working before she wakes up, so mornings are easier). We would have been miserable for the last four years if we still had her on the same med she started with. My younger daughter needs higher doses than the older one, and luckily the pedi has always been receptive when we've described increased struggling and has increased her dose when necessary.
Ds (almost 11 years old) is having the toughest time at school. It’s never been good but the last few weeks of unstructured days is a big struggle. Plus today the kids who earned citizenship are going on a fun morning out while the other kids stay at school and “work”. Ds didn’t get citizenship obv.
We met with a new NP 2 weeks ago and are working on adjusting and changing meds. And she referred us to a new neurodevelopment center that has nearly immediate openings. Their intake guy is presenting DS’s case to their team today to see if they will bring him on as a client and I hope they do! Fingers crossed!
regencygirl - I agree with waverly as it’s been my experience, too. DD is neurotypical and makes friends easily but does not get invitations to other people’s homes/activities. We do all the hosting and parents happily send their kids over. It’s weird but has happened for years with multiple families. We had one friend who slept over almost every weekend and she came on vacations with us. Then her parents’ work schedule changed and they asked if she could come to our bus stop in the morning. I said “sure”. Then she changed schools, I volunteered less and we saw very little of her. DD liked her company so it was NBD, but I always wondered what the parents thought about their own lack of reciprocity.
When she played tennis it seemed like there was a ton of chatting and activities among the other kids, too. I don’t know what ‘secret code’ I was missing but when I looked again, it seemed more fake and posturing than real.
I think you should pat yourself on the back for being a coach, giving your child this experience and let the rest go. It’s mind boggling.
As for isolation, I feel it, too. It helps me to do things I can control without the parents of my kid’s friends. Yes, it would be nice but it comes with its own baggage, too. I read a lot and joined some groups at the Y.
Ds (almost 11 years old) is having the toughest time at school. It’s never been good but the last few weeks of unstructured days is a big struggle. Plus today the kids who earned citizenship are going on a fun morning out while the other kids stay at school and “work”. Ds didn’t get citizenship obv.
We met with a new NP 2 weeks ago and are working on adjusting and changing meds. And she referred us to a new neurodevelopment center that has nearly immediate openings. Their intake guy is presenting DS’s case to their team today to see if they will bring him on as a client and I hope they do! Fingers crossed!
I'm so sorry. I hate those stupid rewards that are really just code for, "Kids that can meet expectations and are easy to deal with." It's so unfair. The kids who can't meet expectations are working so much harder and still often falling short of what adults think they should be doing.
Post by karinothing on May 17, 2023 11:28:53 GMT -5
raleighnc, yeah, our psychologist was confused about why she was a hard sell on medication too. The pediatrician is very open to treatment (he has ADHD as well. My hope was to stay with the psychiatrist for the first few months since we are also dealing with anxiety and wanted to make sure we had the right meds but obviously i need to evaluate what is best for DS.
Ds (almost 11 years old) is having the toughest time at school. It’s never been good but the last few weeks of unstructured days is a big struggle. Plus today the kids who earned citizenship are going on a fun morning out while the other kids stay at school and “work”. Ds didn’t get citizenship obv.
We met with a new NP 2 weeks ago and are working on adjusting and changing meds. And she referred us to a new neurodevelopment center that has nearly immediate openings. Their intake guy is presenting DS’s case to their team today to see if they will bring him on as a client and I hope they do! Fingers crossed!
Solidarity bc mine was barred from 8th grade Field Day bc she's on the 'unable to participate list' due to her behavior. I asked what the alt was for students on that list and the response was that they'll be in a classroom doing work. I think I'll be pulling her from school that day.
Ds (almost 11 years old) is having the toughest time at school. It’s never been good but the last few weeks of unstructured days is a big struggle. Plus today the kids who earned citizenship are going on a fun morning out while the other kids stay at school and “work”. Ds didn’t get citizenship obv.
We met with a new NP 2 weeks ago and are working on adjusting and changing meds. And she referred us to a new neurodevelopment center that has nearly immediate openings. Their intake guy is presenting DS’s case to their team today to see if they will bring him on as a client and I hope they do! Fingers crossed!
Solidarity bc mine was barred from 8th grade Field Day bc she's on the 'unable to participate list' due to her behavior. I asked what the alt was for students on that list and the response was that they'll be in a classroom doing work. I think I'll be pulling her from school that day.
Sorry you have this too. I thought about keeping him Home today but sent him anyway. Loaded him up with books and hoped they just let them play on their chrome books instead.
I'm so glad that things are going well! Your son sounds like my older daughter coming home with blank work. I'm glad we started meds in elementary school because it's a lot easier for her to have better relationships with her peers when she's not blurting out and interrupting constantly. Middle school would have been rough.
Afternoons/evenings are hard emotionally when the meds are wearing off. We had a lot of meltdowns because DD1 would get super upset anytime I had to redirect her because it felt like I was yelling at her. DD1 apparently metabolizes meds super fast, and even though we finally found one that covers her for about 11 hours, she goes to school so early now that it's basically gone by 5pm. So we have a booster dose on days when she has a lot of homework or projects or a late activity. It definitely helps, so good for you for pursuing it. We had to play around with the timing a bit to make sure she sleeps (she takes it as soon as she gets home from school at 3), but I knew there were options to help her fall asleep if we needed to go that route.
Thank you. Yes, he takes his initial med at 7am and practice starts at 4pm (6pm in the summer) so I imagine it is worn off. He can't exactly figure it out himself yet (he is on a very low dose) but I can tell he gets a bit more frustrated in the afternoon than he would otherwise. That is interest you mention the thing about redirection because that is 100% how DS is. His coaches mentioned that they can't correct him because he just gets upset and shuts down. He likely feels they are yelling (and they aren't because I stay and watch lol). But he internalizes it.
I am not sure his Dr will be willing to do it. She was kind of a hard sell for medication to begin with even though our Psychologist was talking to her and we did extensive neuropsych testing. I think because his isn't overly hyperactive/impulsive and his issue more result in emotional dysregulation and shut down (which his therapist refers to as demand overload). But the psychiatrist just sees this quiet kid and the problem isn't obvious. But hopefully she is willing to listen.
My guess is that it's wearing off. One way we know with L is that she gets hungry - ask him to start noticing when he's hungry during the day if that's one of the side effects for his medication.
Re: the being unable to correct him - look up "rejection sensitivity." It's really common with kids (and adults) with adhd. Personally, the sandwich technique works well with me - praise me, tell me what to do, praise me again.
I also wonder if you could get a small dry erase board for him - the coach could jot down quickly what he's supposed to be doing at each station. Essentially - he needs an external working memory. It's part of adhd.
karinothing, gymnastic mom here. Talk to the coaches so they know what is going on and that he is coming off from meds and that you are looking at adding an afternoon booster. A good coach should be able to help and work with him so that he can advance.
DD overthinks things a lot. It doesn't work at team practice but she does some 1-1 work with a coach and he says he has to distract her when not doing skills and not give her too many corrections as once to make things work better.
My guess is that it's wearing off. One way we know with L is that she gets hungry - ask him to start noticing when he's hungry during the day if that's one of the side effects for his medication.
Re: the being unable to correct him - look up "rejection sensitivity." It's really common with kids (and adults) with adhd. Personally, the sandwich technique works well with me - praise me, tell me what to do, praise me again.
I also wonder if you could get a small dry erase board for him - the coach could jot down quickly what he's supposed to be doing at each station. Essentially - he needs an external working memory. It's part of adhd.
Yes to the dry-erase board! I used to write reminders to my girls on slap bracelets and send them to school wearing them. Definitely need the visual reminders.
Post by karinothing on May 18, 2023 6:56:13 GMT -5
gretchenindisguise, Thanks that is very interesting regarding rejection sensitivity. I will talk to his coaches about that and the sandwich method. That is also really interesting about the dry erase board. I will try that out as well.
We had the appt with the psychiatrist yesterday and she said we could try a booster dose. She also gave us the opintion to increase the dose of his current med because they sometimes see the effects lasting longer when they do that. I was hesitant to do that because I think the dose he has is working well and we would only need the booster dose twice a week so I didn't see the need for an increased dose every day. Plus we JUST picked up a new RX for the month so insurance issues might be wonky. So she gave us a trial of a different short acting med for a booster dose. She gave us 15 days worth but since he only needs it twice a week it should last a while.
186momx, I did tell his coaches that we started meds but they are likely starting to wear off during practice. I will let them know we are looking into a booster med. They seem like good coaches but I am so new to this I don't know what to look for yet! At the beginning of the year he would get mat and knock stuff over (like gymnastic mats) and be kind of destructive but luckily we haven't seen that from him since feb. He just usually has once incident per practice where he kind of shuts down a bit over some slight (typically unseen to me or the coaches) so hopefully the afternoon dose will help him push past those.
When we were on the fence about doses, our pedi would say to trial the higher dose for a few days or a week and track how long we thought it lasted, any appetite suppression, emotional state, focus, etc. Then we could switch back to the other dose if there were increased negative side effects. His philosophy was if a dose seemed to get working, to try the next highest dose and compare the effects because a lot of kids are on a subtherapeutic dose and they/their parents don't recognize that because they don't know what "typical" feels/looks like. Like at the optometrist when they start low, go high, and then settle on the ideal. They usually don't experience significant negative side effects on the slightly higher dose, so we never had a problem with trialing a med or a dose. All insurance is different, but we generally didn't have a problem with getting a different dose or med. Sometimes we would run into the issue of filling controlled substance prescriptions too early, but the pharmacist was able to deal with it because it was a different dose. So I think we would fill the new dose a week or two before the older dose ran out. Save whatever meds you don't use in case you run into a shortage.
Post by gretchenindisguise on May 18, 2023 9:30:35 GMT -5
karinothing, we have the periodic short acting booster dose for homework purposes and it seems to work really well. I hope you have a similar experience with it!
Post by karinothing on May 18, 2023 9:31:56 GMT -5
raleighnc, Thank you. He has zero side effects with this dose. I think she wanted to hold off because despite insurance we are still paying $$ for the meds. He has a chewable pill which insurance doesn't like. We are probably changing to a different pill completely so insurance will pay for it (it cost like 500 without insurance and we are paying $200 but pretty sure another med will be a lot less costly).
That makes sense about going up and down with dosage. I have a lot of anxiety regarding him being on meds which I need to get over. I know it is good for him and things are better (I mean he has told me things are better!) but there is still part of me that can't help question "is this the right thing?" I guess social bias over this stuff is harder to overcome than I thought.
Hi! I have a triple neurodiverse son who just turned 9. He has ASD, ADHD, and a very high IQ. (Which I didn’t know was a neurodiversity until his dx.) We put him in a new private school this year for kids with learning differences, and it’s been a mixed bag. He had an awesome teacher he really bonded with, but she left abruptly in February because she was frustrated by the new administration. We were so sad. His new teacher is very good, but DS just hasn’t bonded with him. He found a best friend, who also has ASD and a high IQ (not sure about the friend’s dx, but I can go out on a limb here because DS and his friend are two peas in a pod). We just found out BFF’s parents are taking their 4 special needs kids and living in an RV for a year, traveling. I have so many feelings on that, chiefly that I’m super sad for DS. And worried for the kids not having a schedule for a year.
One thing that has been really lucky for us is we found a pediatrician who specializes in treating neurodiverse kids. It was pure luck because her son and mine were buddies in kindergarten, and I reached out to her to find a new ped because ours was clueless about ADHD. She has a kid with exactly DS’s issues (the three above with a good dose of depression, anxiety and a heaping helping of rejection sensitivity disorder) and another with just ADHD. She has ADHD and dyslexia and is married to a surgeon with ASD. She has been amazing. She understands how ASD affects sensitivity to doses of meds and act accordingly, she talks TO DS instead of over his head, and she gets how hard this all is.
I honestly don’t know what we would do without her. DS’s first ADHD meds (Adderall)caused a terrible depressive episode with suicidal ideation. She got him on a different class of meds. He’s on Cotempla now, and it’s been awesome. She also understands how to work the system, so she referred us to a pharmacy that uses the coupons etc automatically AND delivers to our house. After we hit our deductible, the meds are totally free. Before that, they’re something like $65 a month compared to $100 per month for our insurance’s mail order pharmacy, even after our deductible has been met. It’s been amazing. And I’m so grateful for her.