SN support and check-in

[macmars45]

How's everyone doing this summer? Any updates on life?

At the end of last month autistic DS(8) got diagnosed with ADHD. H and I have suspected it since he was 5/6 years old so it was unsurprising. By the end of the school year (2nd grade) all his teachers were asking me to get him in for testing knowing that H and I had concerns already. It went from one para expressing her concerns at the end of DS' 1st grade year to the school counselor, his classroom teacher, resource room teacher and his speech teacher all saying it was time. (We'd been on a wait list for testing for months.) Anyway, it's always validating when others see the reasons for your concerns.

I bought tickets for my family to go see Cat Kid Comic Club at a Seattle area Children's Theater in October. They have two special needs showings when the lights aren't as low etc. Last night I got us an AirBnb for the night before because even though we have lots of friends in the area almost all of them have pets. Plus also DS does so much better with his own quiet space and he doesn't do well sharing his bedroom with anyone including H/me. DS' never been to a play so hopefully it goes well. 

[scm1011]

We had a neuropsych eval for DD last month a few days after she turned 5. As I suspected, her issues stem completely from anxiety and she wasn't given any other diagnosis. She started Prozac and now 6+ weeks in we've seen a BIG difference in her fear levels and just her general demeaner. Her once debilitating anxiety has really quieted to a low level hum and she seems so much happier. She was my pessimistic complainer kid and that has really improved, which I wasn't expecting or targeting but is a nice bonus ha. I felt weird about putting a newly 5 year old on anxiety meds but I'm so glad we gave it a try. We're still trying to find a therapist with openings (hoping ASAP since with summer she doesn't have her regular school counselor weekly meetings).

[waverly]

Overall both kids are doing well. DS is easier because there is no schoolwork to manage. He did manage to lose his water bottle though. He gave me attitude about buying another one and almost lost his dad’s water bottle but a counselor helped him find it again twice.

We found out that DD is likely the cause of about 70% of their fights. She has a ways to go in maturity and not annoying her brother.

We are doing the same camps as last year and they are transitioning fine between the camps. Next year it will probably be less camps as DS will be 14, so I really need to think on that. But for this summer I am taking the wins.

[mommyatty]

DS freaking loves summer. He’s spending way too much time on screens, but I’m working and DH has no interest in reining that in, so oh well, I guess. We just came back from vacation. DS did well. He was nervous taking off in the plane on the way there but he did an amazing job using his strategies to calm himself and stay regulated. On the way back, he told me, “I’m not so nervous since we just did this and I was safe.” I was really proud of him.

scm1011, good for you for medicating your child’s heath issue. I say that with (I promise) zero sarcasm. I waited longer than I should have, and ended up with a second grader with out of control depression and anxiety and suicidal ideation. I had to talk to myself a lot about not buying into the stigma of giving medical help for medical issues when those medical issues result in mental instead of physical manifestations.

[nsl]

scm1011, my sister put my nephew on anti-anxiety medication when he was 5, and it has been life changing for him and their entire family. He's gone from being a kid who would melt down over the tiniest thing and say some pretty violent and scary things to one who has friends at school, can experience frustration without losing it, and the violent talk has disappeared. She was also reluctant to medicate at his age (and still has to fight her ex about it), but it is breathtaking to think about how the kid he actually is has been able to come to the forefront now that he's not plagued with anxiety. I really hope this is the start of as great a chapter for your daughter as they have been for him.

[ProfessorArtNerd]

I was just texting my sister- I know that being inflexible is an autistic trait of Lucy’s (16). But it is hard to deal with when she can’t pivot from one store to another to pick up body wash. I was already going to the grocery store- I’m not going to target later on, where they keep that stuff locked up. It takes forever to get someone with a key- which I already know is going to be a problem for her as well. I can’t logic my way out of my own anxieties. Ugh why do I expect logic to work with her?

I am going to call a psychiatrist tomorrow for David (8). Reading all the success stories with medicating for anxiety have made me determined to do the same for him.

Joey has his early intervention appointment August 9. He’s starting to say words a lot more now, but not stringing together sentences yet. He’ll be 3 in September. I’m glad he misses the cutoff date for his grade by a couple weeks. We have some extra time to work with him before he starts.

[mommyatty]

ProfessorArtNerd, I talk pretty openly about DS and why we medicate him for depression/anxiety and for ADHD even IRL (he does too… it’s with his consent) because I really didn’t understand the science behind meds for mental health issues and ADHD until I had a kid who needed me to understand the science. So if you have any questions or concerns I am happy to help however I can! Honest to God, Lexapro saved DS’s life. Not exaggerating even a tiny bit.

[arehopsveggies]

DS with autism has been rough lately. Sooo much screaming. He will start at the school that big brother and I are at next month. I know he’s nervous about a new school but hopefully having me 20 feet away will be helpful?

DS with adhd needs a new dr, our primary is retiring. Idk if I take him back to her for one more med refill, or try and find someone new now. Plus the stress- what if new person isn’t ok with our med plan? Ugh.

I’m in my last month of my masters and they keep saying I’m neglecting them. Guys…. You have my full attention 85% of the time, I just want you to go watch Netflix for a few hours while I write papers.

[mommyatty]

arehopsveggies, my two cents? Go get the refill and immediately start looking for a new doc. Can your current doc make a recommendation? Our pediatrician is a freaking godsend. Her son and mine were buddies in kindergarten, so we found her by complete happenstance. But she has ADHD, her hubs (a well-respected surgeon who travels all over the world teaching people to do surgery with this special robot) is autistic, her oldest son is AuDHD like my son is, and her younger son has ADHD. So she GETS IT. Like totally gets it.

Congrats on your masters!! You are so close!!!

[arehopsveggies]

Jul 8, 2024 21:01:06 GMT -5 mommyatty said:

arehopsveggies, my two cents? Go get the refill and immediately start looking for a new doc. Can your current doc make a recommendation? Our pediatrician is a freaking godsend. Her son and mine were buddies in kindergarten, so we found her by complete happenstance. But she has ADHD, her hubs (a well-respected surgeon who travels all over the world teaching people to do surgery with this special robot) is autistic, her oldest son is AuDHD like my son is, and her younger son has ADHD. So she GETS IT. Like totally gets it.

Congrats on your masters!! You are so close!!!

We have a recommendation from our current clinic and a friend that is in the healthcare field…. But in this town doctors often don’t stay more than a year. The fact that we have managed to keep one provider for so long was practically a miracle. My boys loved her, they cried when we found out she was retiring.

[campermom]

PDQ
We are done with IOP and stepped down to outpatient. Tomorrow is the first appointment back with the old psychiatrist, as we had to go with the psychiatrist in a higher level of care for those couple of months. It was one of only 2 programs in the state for this young of an age, and luckily was at the practice we went to. So those two practitioners spoke frequently.

During the last appt, (virtual) Dad refused to tell us (the doctor and I) how many pills he has at his house. He had been withholding the stimulant and won’t tell us how long. She asked a few times, asked why he would not tell us, and at one point asked him to get the bottle. He refused. It’s not enough to file for contempt. If it were the mood stabilizer, you bet I would be. This new Dr did take a firm stance on administering everything-even the stimulant, daily, given the level of crisis we went through.

Meanwhile in neurology, the PANDAS suspicion is being addressed with antibiotics. EEG results should be in and I’m checking on that tomorrow.

My son is doing better but not as good as he was before this drastic, rapid decline that began in late February. 5 day Vacation went ok with one very difficult incident, but otherwise better.

At Camp he has a 1:1 and I’m not sure that’s completely effective but better than nothing for sure. . I just need him to get through 9 days of camp, and then we have off the rest of the summer. It’s possible will have a new special educator next year, who used to work as an IA in the support room, so they know each other.

[mommyatty]

campermom, do you think he actually will administer all the meds? What a fucking psychopath.

[scm1011]

mommyatty, thank you and I'm so sorry your child's depression and anxiety got to that point. How scary! I could see how my DD's anxiety headed that way if we didn't intervene, as she has (had?) a tendency to turn inward and spiral in a "I'm a bad kid and you don't love me" way. I hope the medication has been a life saver for you!

nsl, thank you, too. It is interesting to see how anxiety influenced behavior in ways we didn't realize. My DD is so much more joyful and easy-going now, which has made life for the whole family so much easier.

[campermom]

If there’s anything I know it’s that his number one motivator is to promote discord for me, at any cost. I have no control over it. My child is at an age that if he was aware of skipping a med; he would tell me, but he’s also not dependable enough with memory or time awareness to keep track of it himself.

I do think he will administer the most important meds. He sees this stimulant as a control mechanism over me.

The last 2 visits to him have resulted in one stimulant pill being returned. Which means either one day unadministered or he returned one from his stash. I’ll never know.

Despite the doctor’s new directive to administer it daily, I can’t say that’s worth pursuing a conversation about. The question would lead to 20 minutes of his 30 min appointment listening to him go off on a tangent of irrational inaccurate allegations of something I did, instead of focusing on my child’s treatment plan.

[dcrunnergirl52]

We're doing okay but summer definitely isn't a break.

DS1 (almost 14 years old, ADHD) is doing great. He had a wonderful time at sleepaway camp, despite him and DS2 having stomach flu for 2 days and staying in the infirmary. He's now in theater camp, doing online PE/health class, and exercising daily, and handling it all so well.

DS2 (11 years old, ADHD, ODD, OCD, anxiety) also had a great time at sleepaway camp, but since then hasn't been to any other camps b/c he refuses most of them. He's just home and spending too much time on screens, which isn't great for his anxiety. Also, in the spring, DS2 started picking at/pulling out his hair. He now has a couple of bald patches.

His dev ped thought his ADHD meds might be contributing to the hair thing. We tried switching him, and it was a disaster. So now we have an appointment with a pscyh that specializes in hair pulling and med management, and I'm hoping we can come up with a better solution and get this under control. I hate the process of changing meds, and DS3 is extremely sensitive to any side effects, so the process is so arduous (and that doesn't even get into the issues with actually getting some of the drugs from the pharmacy).

DS3 (6 years old, ADHD) is doing amazing on his ADHD meds. He's had a great summer so far at camp. This week, he started summer school b/c he's a little behind in reading, which I attribute to him not being able to sit still through books/reading related activities until we got him meds. So far, so good there.

However, our challenge with DS3 is that we are going to Japan, Thailand, and Hong Kong at the end of July, and his ADHD med (Dexedrine) is completely banned in Japan and Thailand. You cannot bring in any quantity. So, over the next 2 weeks, we have to try a new med that is allowed. I hate making a change, but I can't imagine us traveling without meds if we don't have to. (And, in addition, DS1 and DS2's meds are allowed but I need to get letters from their doctor and seek approval from the Departments of Health in Hong Kon to bring them in...it's a total PITA).

So, lots of challenges still over the summer. I'll be glad for school to start again in the fall.

[penguingrrl]

Very rough summer over here. My 14 (autism, selective mutism, agoraphobia, ADHD, twice exceptional) year old who finally was making progress after 4 years of complete school refusal has completely backslid. ESY started Monday, she got there Monday and it was a rough day (a lot of time in full groups of 20 instead of no more than 5), got completely overwhelmed by the experience and won’t go back despite our and her social workers’ assurances that that was only the first day and it will be a really fun summer. It’s a mess and I’m afraid the school is going to discharge her again. There isn’t another appropriate school in our state, and I really think the issue is any setting that will want/expect her presence 5 days a week because she just finds being around people too overwhelming.

We had to reopen our 11 year old’s IEP at the end of June, just before school got out. The entire grade was basically bullying him and he was unsupported. He now will have a 1:1 aide starting in 6th grade. He currently has anxiety, ADHD, and sensory integration disorder diagnoses, but we finally found a neuropsychologist who is taking our concerns seriously and he is scheduled for full neuropsych testing in November and we fully expect to come away from that with an autism diagnosis. The school basically admitted that they don’t know where to place him because he’s really smart and needs to be in advanced math and language arts for an appropriate challenge, but his social and emotional issues will make that difficult, and he can’t filter out distracting sounds (chairs sliding, throats clearing, etc) so he can’t focus to do his work in a standard classroom, which in our district is super small (no more than 18 kids, often only 15-16) so I suspect he’ll need to move to the school my middle one is in but it will be a huge fight since out of district is expensive and his grades are “good” (he has 100s on all tests, but Bs and low As due to very low grades in class work because of the aforementioned distraction issues).

[raleighnc]

Jul 10, 2024 14:17:10 GMT -5 penguingrrl said:

.

I'm so sorry you are going through this. 💔 Can he take the advanced classes virtually (in a resource room at his regular school? There are a lot of kids that do that in our district (in NC) because their school doesn't offer the class. We have both a virtual public school that handles both full-time students and those taking just single classes, but there are other paid options. It sounds like the other school is the best option, but taking the advanced classes in a smaller environment (especially with headphones if he will wear them) might be a good compromise while you build up evidence. The school should hopefully jump at the idea because it's way cheaper than a teacher just for him or an OOD placement.

[raleighnc]

And can your daughter do homebound instruction for ESY instead of the program?

[penguingrrl]

Jul 10, 2024 16:48:20 GMT -5 raleighnc said:

Jul 10, 2024 14:17:10 GMT -5 penguingrrl said:

.

I'm so sorry you are going through this. 💔 Can he take the advanced classes virtually (in a resource room at his regular school? There are a lot of kids that do that in our district (in NC) because their school doesn't offer the class. We have both a virtual public school that handles both full-time students and those taking just single classes, but there are other paid options. It sounds like the other school is the best option, but taking the advanced classes in a smaller environment (especially with headphones if he will wear them) might be a good compromise while you build up evidence. The school should hopefully jump at the idea because it's way cheaper than a teacher just for him or an OOD placement.

Thanks so much! NJ doesn’t allow virtual programs so that’s not really an option, and our entire district is tiny, one elementary school and one middle school with fewer than 1,000 students between them then we feed to a regional HS that’s a single building district of 1,400 kids, so they don’t even have resources to pool kids with similar needs together. Luckily both our K-8 and HS districts have great relationships with this out of district school and they’re absolutely amazing, so he would be so well served there (they only work with kids who are high potential but have social emotional barriers to being 8n a mainstream school). It’s just getting district to agree since they have to pay and it’s pricey.

My older one just came off homebound in March, but the state was putting enormous pressure to get her off homebound and into a school because homebound is considered most restrictive and she was on it all of 7th grade and again ESY-March of this past year, so district is unlikely to allow it because they get pressured to move to a less restrictive environment if a kid is on it too long. Also, it’s really hard for me to manage homebound because a parent has to be present the whole time, so it’s a ton of time and stress for me instead of knowing she’s safely in school for the day.

[macmars45]

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.

[mae0111]

macmars45, have you been able to get any doses into him? Does he say how it's making him feel? I ask because we tried DD1 on guanfacine a few years ago and it took her a little while to be able to articulate how it was making her feel. When she was finally able to do it, she was screaming with balled-up fists about how it was NOT making her feel less anxious, just completely exhausted and sleepy. So we stopped it... but she's the ONLY kid I know that has reacted like that and we know she has a lot of medication sensitivities.

I just wondered if he's resistant because he doesn't like the way it makes him feel and can't articulate it (in addition to the pill swallowing - which has been a huge challenge for DD2 as well).

[mae0111]

We've had a really difficult several weeks with DD1 (14.5, ADHD, NVLD). She went to sleepaway camp for 4 weeks, which is truly her happy place. She spent her first 3-4 days at home crying uncontrollably because some campers/counselors aren't coming back next year. They all live all over the world, so it's a real possibility that she won't see them again, and communications between counselors and campers is forbidden (for good reason... but she doesn't understand it).

She then swung directly to defiance, screaming, constant tantruming if she didn't get her way. We went to our beach house for a week and it was a total disaster. She was rude and defiant and demanding (STOP WORKING AND TAKE ME TO PLAY MINI GOLF RIGHT NOW! Mini golf is a bikeride away... if she'd been at all nice to anyone, DD2 probably would have gone with her.) It only stopped when she realized that we were serious about taking away her camping trip last week, but by then she'd ruined the whole trip. She admitted that her behavior had been terrible, apologized, and said she would do better.

Under the advice of my therapist, we allowed her to go on the camping trip with DH and friends. She did very well leading up to it, but the second she came home, things fell apart again. Refused to help with the clean-up of the muddy gear. Didn't think it was "fair" that she should have to unpack the camper. DH immediately went back to work yesterday and I was going through a weeks' worth of wet, muddy, campfire-smelling laundry and trying to organize anything that got dumped back into my kitchen. I DID NOT GO ON THE TRIP. But she felt strongly (and loudly) that she should remain on the couch on her phone while DH and I did everything. That attitude got a privilege taken away, and she melted down over that.

It continued into last evening. DH and I ducked out to grab a quick dinner at a local pub, and I started getting texts/phone calls/ FaceTimes from both kids fighting. Bottom line was that DD2 is sick and DD1 was goading and baiting her and doing everything possible to annoy her. We discussed her behavior again, reminded her of her comments about her behavior at the beach house... she DENIED EVERYTHING, said she never apologized, never did anything wrong that week, we were all mean to her...

I just don't know what to do anymore. Our lives are chaos all the time. It's extremely difficult to live like this, and it's been this way for more than 10 years. I don't know how we keep going. Nothing seems to work. Both kids are at camp this week so we'll have a bit of a reprieve during the day. After that we have 2.5 weeks until school starts. We are going to try to go back to our beach house for one more stretch, but I don't even want to go now - it's so miserable when she's in a bad mood.

I'm just really burnt out.

[macmars45]

mae0111 he's on half a mg currently and he's taken 3 days I think. By taken I mean at least some of that half mg has gotten in. I keep checking in with how he's feeling and he says he feels fine/normal.

(hugs) mae0111. Parenting our kids is hard. It's been a really rough summer at my house. Two weeks until school starts.

[mommyatty]

@macmars45- DS cannot even swallow a tiny sprinkle. Like a cupcake sprinkle. Obviously he swallows bigger chunks than that when he’s eating, but he just cannot wrap his head around how to swallow something solid without chewing. So our doc knows we just are not trying anything in pill form. It’s not happening. It’s liquid or capsules that can be poured into something. You can get guanfacine in liquid form at a compounding pharmacy. I don’t know the cost, but it’s probably worth looking into.

DS starts back this Wednesday. I’m a little frustrated because all his testing was last year in April and May. The diagnostician told us she would contact us in July about our IEP meeting. My bff told me their contracts don’t kick in until Aug 1, so I had some grace. Last week on Monday I emailed to ask how to get his IEP meeting set up. She called me and said they’re setting it for the morning before school starts and if we don’t agree to waive the 5 day review period, he won’t get any services until we have come to an understanding/sign off. I’m a lawyer and I’ve spent the last 4 months reading laws, cases, and regs. Clearly they’re already cutting us out of the process, which is illegal as hell but very common. So I asked when we would have the recommendations/draft IEP. She said by the end of last week, and of course we still don’t have it.

[wanderingback]

macmars45 can you talk to the doctor? That med can be a liquid or there’s another brand that can be crushed. No need for everyone to be struggling!

[macmars45]

Aug 11, 2024 10:04:24 GMT -5 wanderingback said:

macmars45 can you talk to the doctor? That med can be a liquid or there’s another brand that can be crushed. No need for everyone to be struggling!

Liquid is actually worse. We mostly gave up that fight years ago. If the liquid tasted like nothing it could be an option.... but I'm sure it tastes nasty or like fake cherry/grape which DS hates the taste of.

Is the other brand a non stimulant like guanfcine? We are really worried about appetite suppression because DS already struggles to eat a very limited amount of food due to his food aversions and he's tall and very slender.... we worry about failure to thrive; so far he's doing okay but it's a constant thought in the back of our minds.

[wanderingback]

Aug 11, 2024 12:00:04 GMT -5 macmars45 said:

Aug 11, 2024 10:04:24 GMT -5 wanderingback said:

macmars45 can you talk to the doctor? That med can be a liquid or there’s another brand that can be crushed. No need for everyone to be struggling!

Liquid is actually worse. We mostly gave up that fight years ago. If the liquid tasted like nothing it could be an option.... but I'm sure it tastes nasty or like fake cherry/grape which DS hates the taste of.

Is the other brand a non stimulant like guanfcine? We are really worried about appetite suppression because DS already struggles to eat a very limited amount of food due to his food aversions and he's tall and very slender.... we worry about failure to thrive; so far he's doing okay but it's a constant thought in the back of our minds.

Yes there are different brands of immediate and extended release guanfacine, so you can ask the doctor if the other brand is an option. As far as liquid unfortunately all medication has some taste, and doesn’t taste like water. So yeah that probably wouldn’t work well if he won’t allow you to mix it with something. Hope you find a solution soon!

[mae0111]

macmars45, are capsules an option? DD2 can usually swallow pills, but she really struggles with the Vyvanse capsules for some reason. So we mix the contents of the capsules into yogurt. It's been working pretty well for us. Good luck!!

[katebeckett]

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!

[erbear]

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.