SN support and check-in

[erbear]

Aug 11, 2024 8:36:35 GMT -5 macmars45 said:

Hi all, just checking in to say H and I started DS(8) on guanfcine a few days ago which shouldn't be crushed or chewed. It's been a fucking mess to get him to take it. Last night was awful. We all three cried and yelled. H threw a water bottle and slammed the front door. It was not our best parenting moment. DS went to bed crying and it took me a bit longer to calm down myself. I cried for how hard things are for DS because things are hard for me too (due to my cerebral palsy & epilepsy) and I never wanted that for my son. Having a disability fucking sucks sometimes.

He can't take his pill in applesauce, yogurt or pudding due to feeding challenges (he doesn't eat those). Even ice cream was a fight because DS was convinced he couldn't swallow it.

Anyways, today is a new day and we will try again.

Ugh. We''ve all been there. don't beat yourself up. 

My DD could only swallow a pill using a straw when she was new to meds.

[expectantsteelerfan]

Aug 11, 2024 13:45:31 GMT -5 katebeckett said:

Aug 11, 2024 8:36:35 GMT -5 macmars45 said:

He can't take his pill in applesauce, yogurt or pudding due to feeding challenges (he doesn't eat those). Even ice cream was a fight because DS was convinced he couldn't swallow it.

Will he eat whipped cream? We just started doing a small (allergy) pill in a spoonful of whipped cream and our son has been able to swallow it. We weren’t having luck with any other options either. Hopefully you can find something that works!

Or what are some things he will eat (if there are any that he will eat without a fight that you aren't worried about 'ruining' by adding a med to)?  My ds was on guanfacine but he never had trouble with pills, my DD is the one who struggles with pills.  But I've used peanut butter, Nutella, Italian ice, cheese (and totally felt like I was giving a pill to my dogs), whatever flavored drink she wanted, etc. when trying to get her to take pills.  There was also a thread recently that mentioned that you aren't supposed to tilt your head back, but instead look down when taking a pill with liquid at least to open your throat up, and that tip has helped (my dd's issue is the feeling of it getting stuck in her throat).  But yeah, if it's still a struggle, ask for a different version that can be given a different way!

[penguingrrl]

Sending hugs to all who need them!

I think we finally are seeing progress after 4 full years of school refusal. I realized that some of the issue is that school shut down abruptly in 5th, then she was unable to go for years, then she was plopped down in high school and expected to understand having different teachers for different subjects, different classmates all day, nobody making sure you wrote down homework each period, and all kinds of both social and executive functioning stuff that she had never been exposed to and most kids master during middle school. So I requested a 1:1 aide starting in the fall. Her school reached out to district and agreed to repurpose a general aide from her program (who she already knew and liked) as her 1:1 as a test run for the last 2.5 weeks of ESY to see if that worked.

She hasn’t missed a day since! And her social worker hasn’t emailed me a single time asking for me to pick her up early because she was too overwhelmed to finish the day. She said it gives her energy knowing she can ask her aide how to handle social situations and know the stress of knowing where to be and when isn’t solely on her. For the first time since 2020 she has made it to school on time and stayed all day for 7 consecutive school days.

We were also exploring getting an ABA to help at home before school because it was taking H and I 2.5-3 hours a day to get her out the door and now she needs very little help (just outfit advice because she’s super into fashion and wants to look great at all times) and is up and out in under an hour.

I can’t believe the change we’re seeing and it’s just having a 1:1 to give her the confidence to do it. Now I just hope district agrees to pay for one because the therapeutic school hires one, but district has to pay for it on top of pricey tuition, but I think they will since she never managed 3 consecutive days in four years and now did a 5 day week!

[pinkdutchtulips]

penguingrrl

Miss R's timeline matches your DD's to a T! School shut down in 5th, 6th was entirely distance learning, then she was plopped into 7th and the rest ... we're still dealing w school refusal.

We're hoping that a new smaller district is what can turn things around. RTC isn't off the table either. There are along of moving parts rn.

[waverly]

I think our next step is to have DS ask for help at school as opposed to asking us parents or his tutor.

In advisory class, they have 2 teacher access days which means go to the teacher that you need help with and get help. He never goes. Last time he went was because I emailed the advisory teacher and math teacher to make him go. 1 day out of 80 opportunities. 

What kind of advice for me would you have to support this from home? I did email his caseworker but did not hear back. I'm thinking if he can ask teachers for help then that would greatly set him up for success in high school.

We may do 1 more year of tutoring, but our tutor only goes up to 8th grade, and we would have to find someone new for high school anyway.

[lucybrown]

Does anyone have any resources for help improving hygiene for a neurodivergent teen and toileting issues? We barely have it together with minimal accidents, but the 13 yo still almost never wipes after using the toilet. It's a combo of sensory and executive functioning issues. We feel like we've tried everything with mixed success. Definitely impacting them socially as peers have commented on the smell.

[mae0111]

lucybrown, we also have some hygiene issues with ND kids - believe it or not, opposite ends of the spectrum there. One kid was struggling to get clean, the other one was using approx 1/2 a pack of flushable wipes EVERY TIME.

We installed Tushy bidets at home, and I have noticed a difference for both.

[penguingrrl]

Aug 12, 2024 12:29:46 GMT -5 pinkdutchtulips said:

penguingrrl

Miss R's timeline matches your DD's to a T! School shut down in 5th, 6th was entirely distance learning, then she was plopped into 7th and the rest ... we're still dealing w school refusal.

We're hoping that a new smaller district is what can turn things around. RTC isn't off the table either. There are along of moving parts rn.

I thought their timeline was similar. It’s so hard! Fingers crossed that this new smaller district is what Miss R needs to thrive!

I’m not kidding that two weeks ago we were worried we were moving back towards home instruction (not allowed long term in NJ) or residential treatment. I still feel like I’m on eggshells, but I’m at pick up now from her 8th day there all day!!!

[lucybrown]

mae0111, SAME. The 6 yo regularly clogs the toilet with too much paper. They're opposite in nearly all ways. It makes parenting fun.

[waverly]

I feel like there was an app I saw about human health habits that maybe this could fall into. Sort of like keeping your "electronic pet" alive like we used to have the Tamagotchi, but I can't find it again. Something like that might fall into the gamer fun, and incentivize hygiene. Maybe it is called Finch? I haven't tried it, but just an idea.

[wanderingback]

Aug 12, 2024 12:38:45 GMT -5 lucybrown said:

Does anyone have any resources for help improving hygiene for a neurodivergent teen and toileting issues? We barely have it together with minimal accidents, but the 13 yo still almost never wipes after using the toilet. It's a combo of sensory and executive functioning issues. We feel like we've tried everything with mixed success. Definitely impacting them socially as peers have commented on the smell.

When you say you’ve tried everything, have you talked to a professional? Occupational therapists can help with toileting and neurodivergence. Sorry if this has already been tried. I hope you get some strategies that help.

[lucybrown]

Aug 12, 2024 14:14:12 GMT -5 wanderingback said:

Aug 12, 2024 12:38:45 GMT -5 lucybrown said:

Does anyone have any resources for help improving hygiene for a neurodivergent teen and toileting issues? We barely have it together with minimal accidents, but the 13 yo still almost never wipes after using the toilet. It's a combo of sensory and executive functioning issues. We feel like we've tried everything with mixed success. Definitely impacting them socially as peers have commented on the smell.

When you say you’ve tried everything, have you talked to a professional? Occupational therapists can help with toileting and neurodivergence. Sorry if this has already been tried. I hope you get some strategies that help.

We’ve made minimal progress in this area through OT. OT was very helpful in other executive function areas. Unfortunately our clinic closed suddenly and we’re waitlisted elsewhere. Her mental health therapist also worked with her a bit about the TP and public bathroom phobias. I don’t know what other kind of specialist could help. We’ve ruled out medical issues and consulted pediatricians. The potty training issues seem to be due to sensory difficulties, specifically interoception. She has difficulty detecting bodily cues in many ways.

[pinkdutchtulips]

Aug 12, 2024 12:47:01 GMT -5 penguingrrl said:

Aug 12, 2024 12:29:46 GMT -5 pinkdutchtulips said:

penguingrrl

Miss R's timeline matches your DD's to a T! School shut down in 5th, 6th was entirely distance learning, then she was plopped into 7th and the rest ... we're still dealing w school refusal.

We're hoping that a new smaller district is what can turn things around. RTC isn't off the table either. There are along of moving parts rn.

I thought their timeline was similar. It’s so hard! Fingers crossed that this new smaller district is what Miss R needs to thrive!

I’m not kidding that two weeks ago we were worried we were moving back towards home instruction (not allowed long term in NJ) or residential treatment. I still feel like I’m on eggshells, but I’m at pick up now from her 8th day there all day!!!

That is FANTASTIC news!!!  

[penguingrrl]

Aug 12, 2024 14:59:01 GMT -5 pinkdutchtulips said:

Aug 12, 2024 12:47:01 GMT -5 penguingrrl said:

I thought their timeline was similar. It’s so hard! Fingers crossed that this new smaller district is what Miss R needs to thrive!

I’m not kidding that two weeks ago we were worried we were moving back towards home instruction (not allowed long term in NJ) or residential treatment. I still feel like I’m on eggshells, but I’m at pick up now from her 8th day there all day!!!

That is FANTASTIC news!!!  

Thank you ❤️❤️❤️

[mommyatty]

lucybrown- Can you figure out what the underlying issue is? My kiddo is younger (10). We explained to him that he was basically getting diaper rash from not wiping. And he’s gotten better. His issue was not wanting to get it on his hands and the TP was shredding, so we got him booty wipes. That helped.

[imimahoney]

Aug 11, 2024 14:33:25 GMT -5 erbear said:

I'm nervous about school for my ADHD 10th grader. It's been a rough transition to high school -- she was so well supported in middle school and it all disappeared when she hit 9th grade. She needs EF support, and without it, she performs at half her capacity. She's in 3 honors classes and I don't know how to get her teachers to understand that they need to do some tiny little things and they will get her best. It's so frustrating.

Does she not have a liaison she works with? If she has an IEP or 504 her teachers need to follow what is stated as accommodations/modifications. Her liaison should be pushing for her teachers to meet her needs.

[erbear]

Aug 13, 2024 12:58:56 GMT -5 imimahoney said:

Aug 11, 2024 14:33:25 GMT -5 erbear said:

I'm nervous about school for my ADHD 10th grader. It's been a rough transition to high school -- she was so well supported in middle school and it all disappeared when she hit 9th grade. She needs EF support, and without it, she performs at half her capacity. She's in 3 honors classes and I don't know how to get her teachers to understand that they need to do some tiny little things and they will get her best. It's so frustrating.

Does she not have a liaison she works with? If she has an IEP or 504 her teachers need to follow what is stated as accommodations/modifications. Her liaison should be pushing for her teachers to meet her needs.

It’s a private school. She has a formal education plan but IEPs and 504s are not done. There’s no real legal leg to stand on. And the kicker is that 1) I do learning support in the same school and am baffled by the world in which the high school just…doesn’t accommodate and 2) what’s on the FEP is just plain good teaching (written directions, class notes provided, checklists for long term projects) and for some reason, this seems like I’m asking for a miracle to some of them. It’s the same school. We do all of these things for everyone in middle school.

[imimahoney]

Aug 13, 2024 13:10:14 GMT -5 erbear said:

Aug 13, 2024 12:58:56 GMT -5 imimahoney said:

Does she not have a liaison she works with? If she has an IEP or 504 her teachers need to follow what is stated as accommodations/modifications. Her liaison should be pushing for her teachers to meet her needs.

It’s a private school. She has a formal education plan but IEPs and 504s are not done. There’s no real legal leg to stand on. And the kicker is that 1) I do learning support in the same school and am baffled by the world in which the high school just…doesn’t accommodate and 2) what’s on the FEP is just plain good teaching (written directions, class notes provided, checklists for long term projects) and for some reason, this seems like I’m asking for a miracle to some of them. It’s the same school. We do all of these things for everyone in middle school.

I'm sorry, that's really frustrating. What happens when you speak to the principal or the person in-charge of academics?

[erbear]

Aug 13, 2024 14:46:36 GMT -5 imimahoney said:

Aug 13, 2024 13:10:14 GMT -5 erbear said:

It’s a private school. She has a formal education plan but IEPs and 504s are not done. There’s no real legal leg to stand on. And the kicker is that 1) I do learning support in the same school and am baffled by the world in which the high school just…doesn’t accommodate and 2) what’s on the FEP is just plain good teaching (written directions, class notes provided, checklists for long term projects) and for some reason, this seems like I’m asking for a miracle to some of them. It’s the same school. We do all of these things for everyone in middle school.

I'm sorry, that's really frustrating. What happens when you speak to the principal or the person in-charge of academics?

It's a whole shitshow. I've worked at the school for 20 years, all in middle school. Kids have attended since preschool. Lower and middle school was great -- she struggled but teachers and admin were responsive and helpful. High school seems to have no one in charge -- I've talked to the director of studies, department chairs, head of the division and everyone's stock answer is "we can recommend pedagogy but it's up to teachers to run their classes". It's so weird.

I've got the head of student support on it and I'm composing an email to all of her teachers that says "please read her FEP. Here are three things that you could do that will make a huge difference for her and you". They might think I'm an overbearing asshole but 1) I know what I'm talking about (this is literally my job...and I've taught many of their kids) and 2) I don't freaking care.

[mommyatty]

We had our IEP meeting this morning. Our first one. I think it went well. He’s getting both pull out and push in for math and writing. And pragmatic speech therapy. And counseling and social skills. So I’m glad we can get him back on track after the utter disaster that was the private school he was in.

[mommyatty]

DS had a good first day of fifth grade, but this morning woke up complaining his head hurt. We gave him Tylenol and sent him to school. But today is the first day he switches classes, and I have a sinking feeling it’s going to be a bad day.

He legitimately gets migraines, but he also milks them for all they are worth. And he has a fairly flat affect, so even when he’s sick, he doesn’t always seem sick. So I never know when to take him seriously and when to push him. I hate autism some days.

[pinkdutchtulips]

I sent over Miss R's IEP (all 95 pages of it) to her new school district along w her prior district's recommendation that she continues with H&H and their request for an ERMHS to get to the clinical root of her 'severe school avoidance issues'.

Waiting for the call from the Director of SpeEd at her new district.

[macmars45]

So putting DS' guanfcine in ice cream is how I learned he chews his ice cream even when there aren't any chunks of anything in it. The other night he told me that the ice cream tastes good except the medicine part. That lead to the conversation of food items he chews that most people just swallow. Liquid medicine will go over like a lead balloon. What the hell am I supposed to do now?

[macmars45]

We got to find out who autistic adhd DS' classroom teacher is this year on Monday and he got to meet her yesterday. She is a totally different kind of teacher than his 2nd grade teacher last year. I think she'll be a way better fit than last year! The chances of her taking away his IEP mandated classroom supports is less than 0 and she's much calmer. DS' teacher last year took away his desk fidget item. I was irate!

I work at DS' school and found out yesterday I can personally sue his teacher for violating his IEP requirements because of a new law here in WA state (that went into effect last year I believe). Wish I would've known that last year.

[plutosmoon]

DD has autism and sensory processing disorder, I think I need to have her evaluated for ADHD and ARFID. She is down to only a handful of foods, we just returned from vacation and it was incredibly difficult to keep her fed. She often doesn't eat at all if we can't find a preferred food. She broke down crying at the nice restaurant because i asked her to wear the slightly nicer outfit she picked out. She found it impossible to wait for meals at restaurants.

My sister was on the trip and I learned doesn't believe her conditions exist. She thinks DD just needs to learn to suck it up in these situations. My sister is generally a level headed person who is very good to my DD, so I found this declaration super weird.

[karinothing]

Aug 17, 2024 8:27:54 GMT -5 macmars45 said:

So putting DS' guanfcine in ice cream is how I learned he chews his ice cream even when there aren't any chunks of anything in it. The other night he told me that the ice cream tastes good except the medicine part. That lead to the conversation of food items he chews that most people just swallow. Liquid medicine will go over like a lead balloon. What the hell am I supposed to do now?

Is that the only one he can take? Or is there an alternative? If it is for ADHD , do stimulants not work? There is a chewable stiumulant med (Quillichew). DS has tried a few and we settled on concerta which has a coating and made it easier to swallow. 

But what worked for my kids was to fill their mouth with water, put the pill in and then just keep chugging water (or whatever drink) until they eventually swallow it  

[macmars45]

Aug 23, 2024 12:50:59 GMT -5 karinothing said:

Aug 17, 2024 8:27:54 GMT -5 macmars45 said:

So putting DS' guanfcine in ice cream is how I learned he chews his ice cream even when there aren't any chunks of anything in it. The other night he told me that the ice cream tastes good except the medicine part. That lead to the conversation of food items he chews that most people just swallow. Liquid medicine will go over like a lead balloon. What the hell am I supposed to do now?

Is that the only one he can take? Or is there an alternative? If it is for ADHD , do stimulants not work? There is a chewable stiumulant med (Quillichew). DS has tried a few and we settled on concerta which has a coating and made it easier to swallow. 

But what worked for my kids was to fill their mouth with water, put the pill in and then just keep chugging water (or whatever drink) until they eventually swallow it  

We haven't tried stimulants at this point. We're really worried about the appetite suppression. DS is very slender and tall and struggles to eat due to his autism. He can't tell when he's hungry or full and has limited safe foods so it's hard. We're trying to keep him out of the failure to thrive category.

[wesleycrusher]

Aug 17, 2024 8:27:54 GMT -5 macmars45 said:

So putting DS' guanfcine in ice cream is how I learned he chews his ice cream even when there aren't any chunks of anything in it. The other night he told me that the ice cream tastes good except the medicine part. That lead to the conversation of food items he chews that most people just swallow. Liquid medicine will go over like a lead balloon. What the hell am I supposed to do now?

Is he on the ER version?



The IR (instant release) version can be crushed.

I worked with kids/adults with developmental disabilities for years. We always found a way to gets meds in with the limited food supplies we had (like using the tiniest bit of peanut butter to stick a pill inside the curl of a Dorito, or liquid meds in pop). It's challenging. 

[arehopsveggies]

This is the first year my adhd kid has to change classes and it is killing us. One of the teachers finds me in the hall daily (not always the same one, but it’s always gonna be someone!) because he can not figure how to get the right materials to the right classes, and get finished work turned in to the correct teacher. He had an IEP. We had a meeting last week. I hope things get better soon.

[lucybrown]

Aug 12, 2024 15:34:51 GMT -5 mommyatty said:

lucybrown - Can you figure out what the underlying issue is? My kiddo is younger (10). We explained to him that he was basically getting diaper rash from not wiping. And he’s gotten better. His issue was not wanting to get it on his hands and the TP was shredding, so we got him booty wipes. That helped.

Sorry for the late response, we were on vacation.  I appreciate the responses. 

The underlying issues are complex.  She has underlying sensory issues where she has difficulty noticing and interpreting bodily cues.  The need to use the bathroom is one.  We have had a bathroom use schedule since potty training at 3.5.  As she grows and is more independent, I am less able to enforce this. Scheduled bathroom use prevents accidents, but does not help with the wiping/hygiene.  She will often sit in the soiled clothing until prompted to clean it.  I think there is a level of denial and/or freezing when an accident occurs. 

There are also sensory issues related to toilet paper and restrooms.  There are also some phobias that I don't even know how to begin to tackle.  We've done therapy and occupational therapy with mixed results. She says looking at and thinking about toilet paper actually makes her nauseous and lightheaded. We've tried all the different types without success.  Baby wipes are acceptable.  But, she often forgets to use them while in the bathroom.

We've had more success recently with having her wear a light pad and changing it each time she goes to the bathroom.  It's not perfect, but more hygienic.  She agreed this is an acceptable option, but we're working on consistent use.  

Her hygiene issues go beyond toileting and into hair washing, face washing, etc..  Overall, it is more related to executive dysfunction and forgetting to actually do the tasks when in the shower, etc.  We're trying to help her be more successful and gain more confidence in her abilities.  She feels terrible about herself and others call her smelly.  It's tough stuff.