SN support and check-in

[macmars45]

It's been a minute since we had one of these posts. Anyone need any support and want to celebrate their kids?

Autistic DS(7) is struggling hard in school. He's having a really hard time keeping his hands & feet to himself; he just reacts when other students are mean to him or when there is real or perceived unfairness. He can't let things be and agree to disagree or walk away/refuse to engage.

We're still on the wait list to get DS evaluated for ADHD. I got him on the list in September. Maybe before school starts up again after summer break he'll get an appt. *crosses everything*

[penguingrrl]

I finally have some good news! After 3 years of full school refusal my kid is finally transitioning back into school!

Long version: following covid we weren’t able to get my kid back into the classroom. From the start of 6th grade (fall of 2020) she got overwhelmed and went into what I think is autism burnout. Following 3 quarantines in 2 months when she went back into the building, in January of 2021 she completely shut down. She spent a year and a half (2nd half of 6th, all of 7th) on home instruction where at best she would play video games with the teacher (he was trying to build a relationship to try to work with her and was wonderful, it wasn’t his fault) for a little bit, but she mostly holed up in her room ignoring everyone. We went through 4 psychiatrists who shrugged their shoulders and couldn’t help us before we finally started getting answers. We finally got an autism diagnosis as well as selective mutism and agoraphobia in February of 7th grade (Feb ‘22) and the district then agreed to a therapeutic day school placement once we had that. From the start of ESY in July of 22 until June of 23 (so all of 8th grade) the therapeutic day school tried to get her in. We successfully got her to campus a total of 70 days that entire year, and got her out of the car maybe 35 of those. I never left campus because she couldn’t handle it, and she never stayed more than 1.5 hours that entire time. In the midst of that I had to leave my job to support her because H and I couldn’t both work full time, commute, and provide the support she needed.

At the end of 8th grade they discharged her for a higher level of care, but nobody could tell us what kind of care to get. She didn’t qualify for inpatient or residential as there were no harming behaviors (self or other). Finally last May (shortly before her discharge) she was paired with an amazing therapist through the children’s system of care for our state, and that therapist worked miracles. We went from less than 15 minutes of engagement in our house to walking around a local horse farm to having sessions in a Panera when it was too cold. The therapist also suggested a class of drugs I had never heard of and nobody had offered. Within 2 months of starting those (abilify is the main one) we started seeing signs of major improvement.

After starting to work with this therapist and getting the meds sorted out we finally got her to engage with a new home instructor, who helped sort out the educational component. It turned out half of the school refusal was that prior to the pandemic she was a straight A student and couldn’t handle feeling behind and felt like she could never catch up. Our new home instructor was able to get real engagement and basically made up 3 years of missed instruction in 5 months of 1:1.

As of mid March she’s back at the therapeutic day school 3 days a week and thriving! She asked to go back and even has friends. She’s awake and dressed before I get up most days (before waking her up and getting her to agree to clothes was a multi hour process). She has her fist new friend since 2nd grade and they’ve even gotten together outside of school.

And she recently told me she wants to become an animator. And showed me her artwork that she’s been quietly working on for years and it’s absolutely amazing (especially since she’s had no art instruction since 4th grade). No idea if that will really go anywhere, but she has a goal and dreams of further school in mind!

I know others are struggling with similar things. Please know that it can get better, even if it seems to be taking forever!

[campermom]

PDQ:
My son is 8 w DMDD and has completely regressed over the last 6-7 weeks. He is now violent when dysregulated. Regular activities can’t happen. He can’t get through the school day, after school activities. Im worried about the field trip, and I can’t chaperone bc I have only 3 paid days left and I need them for therapy appointments. He is irritable and has a mood shift but not violent at home.

We haven’t had these patterns for over two years. This started exactly when he stopped getting his stimulant on visiting weekends w his dad. He had 5 visiting weekends out of 6, to make up for missed visits. That’s when he missed them. His dr wants him to go to IOP, for 3 hours in the evening, 3 nights per week. It’s a one hour drive each way.

He needs it. I have two other kids. I’m going to make it happen. I have a support system. But it’s not going to be easy and 3 14 hour days per week for both of us. I’m waiting for the Dr to explain this to his other parent. If it comes from me, he will disagree.

The dr won’t take a stance on saying he must have the the Adderall on weekends. Like me, she thinks it makes sense, but with the half life she doesn’t see how it can explain it.

Theres GOT to be more to this. This dysregulation shift so extreme and abrupt at the same time this med change occurred. I’m pushing for the Matthews Protocol.

[penguingrrl]

Sending hugs campermom. That’s a lot and not easy!

[mysteriouswife]

DS 8 OCD , anxiety, sensory processing and a visual motor integration dysfunction. Difficultly with speech due to OCD tic. Possibly Tourette’s. Too difficult to determine due to selective mutism




DS has stopped sleeping in his room. He wakes up and comes to our bedroom floor. We cannot get him to stay in a bed. I get really upset at the thought of him sleeping in the floor, but what the eff do we do?

The good news- he finally broke 55 pounds! We are cutting back on supplemental food and trying food therapy. He ate a carrot! The school is following his IEP to the word. My aunt sat in on an IEP meeting to take notes. After the meeting she informed H and I what legal action we can take and what buzz words to avoid in the meetings. We requested a follow-up meeting to review progress. That’s when we dropped all the actions we would take if they didn’t take us seriously. You would not believe the progress he has made. He’s passing his classes and enjoying school. We are getting less emails and notes home. Funny how giving a kid the tools needed to learn makes them feel more confident and less defiant.

[waverly]

DS (13) is gifted and has executive function delays. A switch has flipped and I think he might finally (after 1.5 years almost 2 years) be checking his homework document and grades in Skyward. He has been working with his dad on homework but doesn't want to go to the home office in the attic, so he has been doing his homework by himself without body doubling at the kitchen table. I'm not sure what caused the change but it started when dad started checking in with him on homework. To be clear, DH always checked but he said "do you have homework" and DS would say no. But he had homework 99% of the time that he said no. DS wasn't lying per se, but didn't check the homework document so when I ran through it with him I said did you do math, Oh oops I forgot about math, oh oops I forgot about social studies. That doesn't seem to be happening anymore (fingers crossed).  It is much less stressful for me to not have to run home after work and do 15-30 minutes of homework support every night.  I wasn't doing it for him, but I was helping teach math concepts, make sure everything was done, make sure everything was submitted, told him to check the homework document and his grades, check for missing work etc.  He also might finally be doing homework during his advisory class as opposed to watching You Tube.  His advisory teacher has Go Guardian so maybe she is shutting off You Tube or maybe he is more mature.  Honestly, I've emailed the school a couple of times about blocking You Tube on school Chromebooks but they always hem and haw and act confused about how to do that even though this is literally what the IT department does.  

It also helps that the spring is less homework for his middle school. They start the school year very heavy on the load and significantly lesson it in April/ May.

[mommyatty]

DS, age 9 (10 next week!) who is AuDHD with depression and anxiety, got kicked out of his private school for having a massive meltdown. This was the first week back from winter break. We basically kept him home for a full grading period and for the last couple of weeks he worked with my BFF, who is a math interventionist and dyslexia instructor (CALP). After trying to find where to put him, we ended up with our neighborhood public school. So far, it’s going great. They put him in a class with most of the gifted and talented kids. And he’s just incredibly happy. I don’t think he’s really made any friends yet, but the kids are all generally nice to him. He sang a song he made up at school, and a bunch of the kids and the teacher made a big deal out of it and asked him for his autograph. He was so happy and the next day came home and said they were going to start a band.

The thing I’m most concerned about is they haven’t started his testing. I’m not sure what’s taking so long, but then I remind myself it’s really only been about a month. His IEP time doesn’t kick in until over the summer, so they’re just working off what the private school did. So far it seems to be enough.

Oh. And the kicker. His old school was really a school for kids primarily with dyslexia. He did not read a single novel while at that school in a year and a half. He came home with picture books even though he had been reading Magic Treehouse throughout second grade. He’s now averaging 3 Diary of a Wimpy Kid books every week. He’s plowing through them.

[SusanBAnthony]

Apr 19, 2024 0:19:47 GMT -5 mysteriouswife said:

DS 8 OCD , anxiety, sensory processing and a visual motor integration dysfunction. Difficultly with speech due to OCD tic. Possibly Tourette’s. Too difficult to determine due to selective mutism




DS has stopped sleeping in his room. He wakes up and comes to our bedroom floor. We cannot get him to stay in a bed. I get really upset at the thought of him sleeping in the floor, but what the eff do we do?

The good news- he finally broke 55 pounds! We are cutting back on supplemental food and trying food therapy. He ate a carrot! The school is following his IEP to the word. My aunt sat in on an IEP meeting to take notes. After the meeting she informed H and I what legal action we can take and what buzz words to avoid in the meetings. We requested a follow-up meeting to review progress. That’s when we dropped all the actions we would take if they didn’t take us seriously. You would not believe the progress he has made. He’s passing his classes and enjoying school. We are getting less emails and notes home. Funny how giving a kid the tools needed to learn makes them feel more confident and less defiant.

Don't feel bad about the floor sleep! Both my kids went through multi year periods where they came into our room at night. We kept a pallet of blankets on the floor and they slept there until morning. Both outgrew it. No harm done.

[mommyatty]

mysteriouswife, my son sleeps on a camping “mattress” in the playhouse under his low bunk bed. Have you tried a tent on his bed? DS freaking loved his tent. We took it off his bed a long time ago because it kept breaking and frankly we felt like he was getting too old for it. (We didn’t have any diagnoses or suspicions he was neurodivergent at the time.) Now he has a new version of his tent, and he far prefers that to sleeping in his very comfortable bed with his (I’m not kidding) Ugg comforter. He has more high end bedding than I do and he sleeps under the bed on a piece of foam you put under your sleeping bag in the woods. Oh well.

[mysteriouswife]

Thank you for the advice and support. H and I both have some childhood trauma we are unpacking on the lack of a bed. His therapist and school psychologist have all assured us it’s fine as long as he has a bed to call his own. It’s still difficult for me to not put my own experience in his.

We have worked with his therapist (all 10000 of them) to get a game plan. We are allowing him to take control of rearranging his room. We are also allowing him to earn tickets to cash in for room items. We had planned on redoing his room around this age. We are allowing him to have a say.

Thanks for the camp mat idea! I’m looking on Amazon to see if I can find one.

[mysteriouswife]

I’m going to jinx myself.

Out of the blue he asked to sleep in his room. He is in his bed sleeping. 😭❤️

[pinkdutchtulips]

I had the parent intake meeting for Miss R's IEE. When they asked what I found wrong w the IEP, I told them they were dismissive for the underlying reasons why she doesn't want to attend/participate in school. All the IEPs and BIPs in the world won't help unless she is PHYSICALLY in school. Until we get to the root of why she won't go, we're going to have to deal with these problems. That was NEVER addressed in the IEP.

The next step is to do the psychoeducational evaluation. The goal is to get her into 2 classes on campus for 10th, 4 for 11th, and a full day (6) for 12th.

[mysteriouswife]

Apr 22, 2024 21:59:06 GMT -5 mysteriouswife said:

I’m going to jinx myself.

Out of the blue he asked to sleep in his room. He is in his bed sleeping. 😭❤️

He stayed until 3:30 am! ❤️

[campermom]

IOP intake was today and I found out it might be virtual and it makes me feel physically sick to my stomach bc he won’t do well with that and I feel sick that he might get kicked out of daycare if things don’t change and I don’t have any options-he has to be there 2 hours before school bc I have to work. It’s just not simple to switch-I don’t even have another daycare.

How do you go from 2 referrals in 3 months cumulatively to 6 in March and 7 in April and he’s in crisis support every single day?

I feel sick. I can’t sleep. We haven’t had these issues for 3 years.

[mommyatty]

campermom, I’m sorry. I don’t even know why virtual would exist. No one in a state of crisis is going to do well with virtual appointments. No one. Especially not a child.

[mysteriouswife]

Lots of love to those who are battling for their kids. I’m sorry you are dealing with the mental and physical load.

[campermom]

I called absolutely every single hospital center and clinic I could find. And I’m very good at navigating mental health. The only in person IOP program for my child’s age in my entire state would be 5 hours of driving for me per day. And I’d take unpaid FMLA.

There is literally nothing in between inpatient (which won’t work bc at admission he won’t be dysregulated) and regular once a week outpatient therapy. There is literally nothing that exists in person.

[waverly]

campermom, I feel you. Navigating the healthcare system is not easy. I've been having trouble lately, and I've had trouble in the past also.

Is there an option for therapy 2 days a week. Or is there an option for the pcych to write a letter/ prescription for inpatient even if he isn't dysregulated at admission? Not that I am necessarily advocating for in patient.

[arehopsveggies]

Fighting for my kid to get what he needs for his IEP, when the people I’m fighting with are my coworkers…. Sucks.

I’m over it today. It’s tiring

[helpshareplease]

Well after almost a year of work and trying to receive respite care so I can go back to work FT. I thought I finally had it settled. She quit after 3 days. I'm at a loss. She didn't even call or text me, she contacted my SSA directly and quit through her. I didn't find out until my SSA called me late Wednesday night. The provider was supposed to cover Thursdays and Fridays. Now I only have the 1 provider instead of 2 and she now wants to adjust her scheduling. It's all so fustigating. A YEAR OF WORK and I have had one person no call no show on me multiple times so she was let go. and now I have this person quitting on me. I swear I will never be able to work full time again. And that especially sucks because I'm on my income alone. STBXH quit his job again and continues to contribute nothing. I'm tired of the bull shit. Don't even get me started on SSI buss shit because that shit has been a clusterfuck since June of last year. I'm just worn out from all the phone calls and paperwork and this is just for my kid. I'm going through a divorce and that's not fun my dad has cancer My grandmother is transitioning to assisted living I have a cousin whom I'm close with getting a foot amputated  cause of diabetes. I'm just spent. when it rains it pours. I quit! 

[campermom]

helpshareplease I’m so sorry to hear all of this. In my state I have heard of some people being paid to be the provider for their own child since there is no pool of applicants. Is that at all a possibility?

[macmars45]

H and I received an email from DS' resource room teacher today to schedule an IEP team meeting to figure out how to help DS with his school behavior. So that's happening next week.

(hugs) to all those struggling.

[lovelovelove]

So many hugs to everyone. I'm so sorry for those struggling. I wish I had answers.

Dd has dyslexia and was denied an iep again a few weeks ago. Super nervous for middle school next year, that's why we were going to iep now. Will get our independent testing report in a few weeks and hopefully get another evaluation meeting before the end of school. I'm also considering writing a complaint for how the last evaluation meeting went. I know her classroom teacher already verbally complained, but I think I want to do something formal. I just think parents and teachers who are concerned should be heard, not told there's no issue when the data shows otherwise. It was like living a fake news story. Maybe they could say she doesn't qualify for IEP services* but that doesn't mean she's fine in class if she's getting pull out reading support 5x per week and can't keep up with writing assignments, so please acknowledge that.

*I don't agree with that, just saying they could have worded the denial better

[penguingrrl]

helpshareplease sending hugs. I’m so sorry, that is way too much and such an untenable situation. Our society needs better supports for families with higher needs.

[mommyatty]

lovelovelove, if she’s getting pulled out for reading support, SHE IS GETTING SERVICES. Omg, that makes me crazy for you.

helpshareplease, I’m sorry. That’s a lot.

We got a call last week that DS has possibly been pulling his pants down at school because he thinks it’s funny. Or maybe he’s just pulling his shirt up. DH was very unsure of what the teacher said. So that was awesome. We had a serious “you will be absolutely 100% grounded for that nonsense if we ever hear of it again” talk. I told him all body parts that are covered when he leaves for school are to remain covered except in the privacy of the bathroom. So hopefully that leaves no wiggle room.

[katfco]

mysteriouswife, my brother had Tourette's. It can be a challenging diagnosis.

We have good news with DS: he finally is receiving therapy through the children's hospital autism center. The more focused weekly therapy is really good for him.

DD is not doing so well. She's having pretty serious blood pressure issues, which resulted in her completely going off her POTS medication. Little change in symptoms due to that, so it's hard to tell if she really has POTs or if it's just long Covid. At the end of May we have an appointment for Children's Hospital of Philadelphia POTS clinic. Since Nationwide closed their POTS clinic, that's the closest one to us.

Unfortunately, she's going to have to repeat 11th grade. She just can't go to school and even if she could, she can't do the work because of the brain fog. She hasn't been able to read a book in almost a year.

[macmars45]

We had the meeting with DS' IEP team to discuss his behavior challenges last Thursday. I came in prepared for his teacher to fight against his IEP accommodations. Instead his IEP team suggested that his coursework had gotten hard and he was struggling and that they'd touch base with the building OT to see what classroom supports they could provide.

[erbear]

I can't wait for this school year to be over. DD1 (15, 9th grade) isn't really getting many of her FEP supports for ADHD put in place and I'm essentially her EF coach and tutor every day, after a full day of teaching, and it's not sustainable. I need to get the school to put some stuff in place for next year but I'm so tired of advocating for what just feels like...teaching...

[erbear]

Apr 25, 2024 20:13:07 GMT -5 arehopsveggies said:

Fighting for my kid to get what he needs for his IEP, when the people I’m fighting with are my coworkers…. Sucks.

I’m over it today. It’s tiring

I'm in the same situation. It is incredibly frustrating. Hugs.