How do you make the decision to PS a kid with extra needs?

[4KookieKids]

I post a lot about dd7, I feel. She has a number of diagnoses (dyslexia, anxiety, depression, vision issues) and a number of things people sometimes ask about and/or suggest (bipolar, ASD, adhd, apraxia) that have not been evaluated yet. School with her is a nightmare. Every day involves crying, refusal to do her work (reading exercises, vision exercises, etc.). For every 30 minutes of work we get done, I think we spend 2ish hours crying and refusing to do it. She was in a full-on panic attack a few days ago, unable to stop scratching at my and her clothes while shaking. She's also back to waking up 3-4 times a night with panic attacks, so I feel like I have a newborn again, I'm so exhausted during the day!!

I'm at my wits end and my DH has suggested it may be in everyone's best interest to send her to PS next year. I spend so much time with her that I feel like I'm completely neglecting my other children. I feel exhausted after dealing with each meltdown. I think it's true that I could school my other three kids so much better dd7 went to PS. I also think that she *does* do better for others and would not have nearly the tantrums at school that she has for me. On the other hand, she has major sensory issues, is overwhelmed by people, and struggles socially and reading people and situations. (Summer camp last year left her crying for three hours straight but insisting she return each day and she already complains about not being able to make friends.) And she's very much 2E, so she's really bright and able to fly on a lot of people's radars, so I doubt her dyslexia gets remediated well at PS, because she *is* reading on grade level. But the idea of going to school puts her into even more of a panic and she becomes incoherent and unable to even talk about what she's feeling. DH is hopeful that sending her to school would give the rest of our family back our sanity. I'm fearful that it be the straw that puts her over the edge. 

 

I'm not sure what I need, honestly. Besides a clone (one for dd7 and one for the rest of my kids). 🙂
I don't know if I'm looking for permission, reassurance, or a sound cuff over the top of my head. I guess I'm just looking for some sort of input/thoughts.

[texasmama]

What is being done to address her anxiety and depression? Public school has the distinct possibility of increasing those for most kids with the diagnoses you describe. 

There are other school options between homeschooling full time and public school, and I would be exploring those in your shoes. It is okay to look at your family’s needs as a whole, not just your dd7.

However, the mood disorders will need to be addressed no matter the school setting. Anxiety is the reason we began our homeschooling journey, and it allowed for a supportive environment which worked well for my ASD son from 2nd grade to present. (He is 18 now.)

[4KookieKids]

4 minutes ago, texasmama said:

What is being done to address her anxiety and depression? Public school has the distinct possibility of increasing those for most kids with the diagnoses you describe. 

There are other school options between homeschooling full time and public school, and I would be exploring those in your shoes. It is okay to look at your family’s needs as a whole, not just your dd7.

However, the mood disorders will need to be addressed no matter the school setting. Anxiety is the reason we began our homeschooling journey, and it allowed for a supportive environment which worked well for my ASD son from 2nd grade to present. (He is 18 now.)

That is what I'm concerned about.

She is/was in therapy and OT for the anxiety and depression. But they felt like she was so much better that they released her from OT last month and her therapist only wanted to see her every month or two. I wonder if that decrease in supports led to the most recent month of panic attacks and not sleeping. 

[texasmama]

2 minutes ago, 4KookieKids said:

That is what I'm concerned about.

She is/was in therapy and OT for the anxiety and depression. But they felt like she was so much better that they released her from OT last month and her therapist only wanted to see her every month or two. I wonder if that decrease in supports led to the most recent month of panic attacks and not sleeping. 

That would be my guess, as well. My ASD kid had extensive, long term OT (9 years), and when he missed a few weeks, he became emotionally dysregulated. That, in turn, impacted his overall functioning negatively in every area.  

[4KookieKids]

2 minutes ago, texasmama said:

That would be my guess, as well. My ASD kid had extensive, long term OT (9 years), and when he missed a few weeks, he became emotionally dysregulated. That, in turn, impacted his overall functioning negatively in every area.  

Any suggestions on how to convince a therapist that she's sweet and well-behaved in their office, but a holy terror at home? lol. They somehow tend to think it's either an imaginary problem (because I like taking her to therapy several times a week and depriving my younger kids of their nap just for fun...) OR a behavioral problem that I've brought on myself by rewarding her outbursts....

[Terabith]

Your descriptions of your daughter reminds me a lot of my youngest.  We had similar issues with crying and refusal to do work, and when we were homeschooling, we had issues with her outside of the home, as well (hiding under the table in the fetal position at art class, which the art teacher didn't mention until the end of the year).  Honestly, it was really hard.  We had a bad experience with vision therapy, and she developed PTSD from it.  We had a miraculous response to anxiety meds. We did get her reading at/ above grade level, but it felt like I bullied her into learning to read.  I'm not sure in retrospect if it was the right thing to do or not, but I do think reading well changed the trajectory of her life, and I don't think she would have learned to read in public school.  I'm currently student teaching in first grade in public school, and I'm appalled about what goes on there.  I think public school is really developmentally inappropriate, extremely ineffective, and very inefficient in K-2, and I am so glad my kids did not attend.  My youngest would not have done well at all in this environment.  

However....that said, we sent her to Catholic school (small classes) when she was nine.  We put her in third grade (a grade behind) because her birthday is relatively late and she was both behind academically and emotionally young.  In retrospect, I'm not sure that was the right decision, but it was the best decision we could have made at the time, and I think it wasn't a BAD decision.  She did far, far, FAR better than we expected, academically and emotionally.  She really thrived on the increased structure and the herd effect.  It also really improved our relationships at home dramatically.  There was a lot less screaming.  Looking back, I feel like ages 7-9 were probably the hardest of her life so far (she's almost 14).  School was a really good decision for her.  She doesn't love school, but she enjoys the structure and thinks that she does better in school than on breaks, although she prefers the breaks.  She likes having acquaintances but not being forced into deep relationships with people at school.  

However, when she went to school, she was DONE when she came home.  She had no energy for extracurriculars, so all the gymnastics/ swimming/ horseback riding/ physical fitness activities that we used as both PE and OT stopped.  Her sensory needs were a bit chilled by that point (age nine), so it was workable, but she got so much less exercise that between that and puberty, she's gained a lot of weight.  She went from not even being on the growth curve to being obese.  She also hit puberty, too, but I think the lack of movement has been a factor.  

I don't really have a recommendation.  I think school was a good answer for us, because she thrived on the structure and it helped our relationships at home.  But I don't think she could have handled school any younger than nine, and I think ten would have been better.  And even the best school with tiny classes and really good, nurturing teachers, she didn't learn nearly as well at school as she did at home.  I'm glad we weren't counting on the school to teach her to read.  

[Terabith]

2 minutes ago, 4KookieKids said:

Any suggestions on how to convince a therapist that she's sweet and well-behaved in their office, but a holy terror at home? lol. They somehow tend to think it's either an imaginary problem (because I like taking her to therapy several times a week and depriving my younger kids of their nap just for fun...) OR a behavioral problem that I've brought on myself by rewarding her outbursts....

Video.  It feels awful to set up a camera to record interaction, but it really helped outsiders realize what we were dealing with.  

[texasmama]

5 minutes ago, 4KookieKids said:

Any suggestions on how to convince a therapist that she's sweet and well-behaved in their office, but a holy terror at home? lol. They somehow tend to think it's either an imaginary problem (because I like taking her to therapy several times a week and depriving my younger kids of their nap just for fun...) OR a behavioral problem that I've brought on myself by rewarding her outbursts....

 We were very fortunate to have a therapist who  understood the role of sensory processing and retained reflexes and was willing to put the time into treating specifically that.  If the current OT does not treat these sensory issues, you may need a different one. Not sure what the OT worked on with your DD.  My son’s OT understood these principles better than I did. 

Edited March 23, 2019 by texasmama

[Lecka]

My kids including my son with autism are in public school.

The thing that gives me pause is sensory.  This can be hard if she just can’t fundamentally handle being around too much activity at her age.  

I think it can work but I think that if her sensory is a sensitivity (which it often is with anxiety) (my son was mostly under-reactive for sensory which is just fundamentally easier to deal with in a school setting).  

You can also put your other kids in school and focus on her!  Just to say it is an option.  

I have been really, really happy, overall, with my son in autism programs, though sometimes I have also been very, very frustrated.  

If she is anxious at school or anxious when she gets home from school, you are going to have to take time to deal with that.  It is just time-consuming.  You will need to coordinate with school etc etc etc.  

[PeterPan]

6 hours ago, 4KookieKids said:

On the other hand, she has major sensory issues, is overwhelmed by people, and struggles socially and reading people and situations.

Ok, here's my two cents. My ds has an IEP, and reality is for her to enroll she needs to have evals through them and needs an IEP. You have two or three paths. 1) Make a formal written request to the school, get an IEP (120 days, boom done) and THEN decide whether to enroll her. Now is the time to start because they're going to kick and scream about the summer gig. Force their hand, hold to the 120 days, get it done. 2) Get private evals first to help you advocate during the IEP. If you do that, you're depending on your finances, insurance whatever to make evals happen and could have waits that could go much longer than the 120 days of the IEP process. So you'd want OT, SLP, and psych evals, and doing all that would be many months. I like private evals, but are you on waiting lists or have you had them? 

Path 3 is just throw her in now. Monday morning. Just walk her in. Now part of it will suck because my guess is the schools are about to go on a testing binge. On the other hand, they'll get a lot of data. And really, the last month or so the schools seem to have a lot of FUN! Seriously. Like around here they do bounce houses and field days and field trips and so much stuff. It's a pretty happy time. If your dh wants to just change the dynamic immediately, that's what you could do. Just walk her in, enroll her, boom. BUT WHEN YOU DO THAT also had them the formal written request stating you suspect disabilities and beginning the IEP process. They could say they want to observe her for a grading period. If you go in with evidence, that can help. They have the right to say they don't have evidence and want to observe her first since you're enrolling. If they do that, they may begin RTI if they see anything drastic.

There's a lot of good that can come with making a move, some kind of move. I will tell you though that the unfun position you're also in is that they aren't going to see you the way you see yourself, at least not initially. Like you know you're a hard-working, diligent mother. In our area, 60+% of kids live below the poverty level and some things are the norm that just make school officials pretty much think they're seeing that (neglect, etc.) everywhere. So honestly they were pretty snide with me and pulled the "we're professionals" crap, which got wearisome. And you won't actually know what will happen the first how many weeks, because she'll be in sort of a honeymoon phase with the novelty. But if they're trying to eval her when she's in that honeymoon phase, really that's not going to get you the best help. It's a known phenomenon. 

How dire is the situation? You're talking VT and didn't you have a VT thread? And did we have cautions about what you were doing, saying things didn't add up or something was amiss like retained reflexes? I can't remember. My first thought when I read your thread was just to stop schooling. Stop the VT, stop school work, stop everything. This has been a LONG HARD WINTER. Like it seems totally interminable. I would go on a cruise, take a vacation, just LEAVE, change the pace, change what you're doing.

No matter what, you have relationship, and if you drop demands and get back to relationship for a couple weeks, you can probably reclaim your peace. If you can't get back to a peaceful place even when you're NOT doing school work, you've got even bigger issues.

Now here's the thing. One, you don't know it's "dyslexia". It might be SLD Reading, but with the sensory issues you're describing and the extreme reactions maybe more should be on the table. Private evals are usually more objective than ps evals. Now is the team there ADOS-trained? You could flat-out ask. Some schools in our area now have ADOS-trained IEP teams, like the whole team, and they're doing a really stellar job identifying these disabilities. And some are humming and hawing and like well here's a GARS... Just a wide range of skill levels there. 

My ds has an IEP that reflects the broad range of his deficits. I can tell you that our ps would TRY and that they have quite a few tools to make the placement good. We had a point a year ago (literally, like 15 months ago) where things were really ugly and we walked right up to the line. I had a price from the autism school to finish out the school year and we were a go. Walking up to that line was GOOD for us. Being honest about what wasn't working was important. We prayed really hard and we had to get really honest. We found some answers that worked for him enough that we didn't do it. But would it have been bad? No, absolutely not. I wouldn't have been looking at it had it been bad. I could enroll him tomorrow and it wouldn't be bad. 

I think some schools are doing things you've read about and know need to be done and they're actually getting them done. I think people can be stretched thin. If you had to choose, would you rather homeschool her or the other three? If you had to CHOOSE, which way would you go? Which group (the 3 or the 1) would you do the most good for by having home? Which is the most likely to thrive in school? 

I don't think school would be as bad as you think, not if they get a strong IEP in place. You have to advocate hard and take in evidence. There are buzzwords. We finally got to a place where we had lawyers in our IEP meetings, and I pulled out pictures of bruises he had made on me. That ended it. Suddenly their lawyer was up, the coor was up, and things were happening. There ARE THINGS you can say that will make things happen. You just have to be brutally honest about what happens and take in evidence. 

If you think you would do her the most good and the others could thrive in school, enroll the others. It's not a crime to do that. If you think she's beyond you doing by yourself while servicing the other three, then what are your paths? Like what are your brutal, this is what would really have to happen to make it work, paths? Around here I can pay $30 an hour (private pay) and get an intervention specialist. That will be someone who probably used to teach in the ps who now teaches privately. That person can come in your home and work with her from 9-1 and do her entirety of her school work. So she's home, she's working your worldview, your list that you generate with your worker, but she has someone dedicated to her. Prices will vary, but these people are out there. You might post on Care.com if you want that type of service. Sounds strange, but I find people that way. I have one I'm talking with right now that I may hire and that's how I found her. They may bill at a higher rate, but that is something that is out there.

I would not continue doing what you're doing. If she's that stressed, it's shutting down learning. It's ok to tomato stake, work on relationship, take a break, take a vacation, regroup, and figure it out. It's ok to put her in ps on Monday as a way to get that break. You just say hey I love you but I need a break and you'll probably have fun, here's your lunch pail. Think of it as summer camp in March and just use it as a break while you sort things out. She's 7. Probably not too much dreadful stuff happening with the 7 yos really. Later, I get it. But even in our area that age is so charming. The kids just, well its really nice. Have you been in your school? Have you toured? I was in our nearby ps for some of the IEP testing and it's really, really nice! It's nothing like when we were kids. The little girls were all dressed up so cute and the library was nice. It's really very homey. 

I'm sorry it's hard. I wouldn't try to make the fall decision right now. I would sort through how you can make evals, and I would make the safest choice for Monday. If that's taking a break, take a break. If that's touring the school, tour the school. You don't have to enroll to get evals but somehow you've got to get evals and begin getting this sorted out. 

Again, I'm sorry it's hard. How many more of your kids are going to be this hard? Advocating through the school system will be another kind of hard, but at least it's a manageable hard. It takes a lot of work to advocate for a strong IEP that addresses all the areas. It's not like a copout or doing less. 

[PeterPan]

6 hours ago, 4KookieKids said:

She was in a full-on panic attack a few days ago, unable to stop scratching at my and her clothes while shaking. She's also back to waking up 3-4 times a night with panic attacks,

When did these start? You need to back up and figure out when they started. Was it with the VT? I get so into things, sometimes I lose the flow with my kids and don't realize when things started or what precipitated behaviors. 

So yes, she sounds very stressed and whatever is causing it needs to stop. Unless the demands you're making are necessary to life, they need to stop. 

Do you have a grandma or someone around who can take her or the other three or alternate? What are things that help her feel better and more connected? When my ds was 7, it was board games. We played a lot of board games, especially Catan Jr and Trouble. Oh my goodness he loved Trouble!! So if you can farm out the others for a few hours or a day, just sit with her and play board games and eat popsicles and get things calmed down. 

Are you doing exercises for retained reflexes? Sorry, I don't remember. If you are, then again go back to your data on when these behaviors started. When we were working on reflexes, my ds' behaviors (the ones due to the reflexes) went OFF THE CHARTS for a while. They got worse, and then as the reflexes would integrate the behaviors got better. So look at your data and see what it shows. If you're working on reflexes, that could happen. Look at your data.

Keep sleuthing. If you were in the middle of reflex work and you send her off, then it just pauses and doesn't really solve anything. That's a really different scenario and could have other options like sending out the three each day for a few weeks while you get her body calmed down.

You definitely need to look at your data, see when things got worse, see if there's something going on. Keep talking. You've got a long time between now and Monday to get it sorted out. 

[PeterPan]

6 hours ago, 4KookieKids said:

Any suggestions on how to convince a therapist that she's sweet and well-behaved in their office, but a holy terror at home?

Sigh. One, novice therapist. Two, how long are the sessions? Three, is the OT actually making any demands? The behaviors aren't coming out because the length of the sessions aren't pushing her and the level of demands aren't maxing her out to require supports. In other words, the OT is keeping it comfortable. 

My ds can be really joyous to work with, but a professional with enough skill can intentionally take up that level of demand and BOOM bring out behaviors. She's probably pulling it back and not going there. It wouldn't even be smart for her to go there, because if she pushed it that far your dd would become non-compliant and not want to go back.

What does convincing the OT of anything get you? It probably doesn't. I've gone through so many OTs, sigh. They all bring something and they all have things they don't know. Use her for the good she's doing you and find someone else to help with the things this OT doesn't know how to address.

Edited March 24, 2019 by PeterPan

[PeterPan]

I'm sorry it's hard. Those were awful days when we were pondering enrolling him. And it was hard because it wasn't like this calm, rational, try 5 schools, we planned this a while thing. No it was a rushed, we're really in bad straits and this has to change NOW. And that was awful on so many levels. And I tried to be chill about it and wasn't and it was making me physically sick. 

So it's ok if you're not chilled with it. The main thing is to figure out a safety plan, what REALLY HAS TO CHANGE to make things safe and calm Monday. And you have a bunch of paths you could investigate. As long as everyone is safe Monday and calm, it's an ok temporary choice.

[PeterPan]

6 hours ago, texasmama said:

What is being done to address her anxiety and depression? Public school has the distinct possibility of increasing those for most kids with the diagnoses you describe. 

I just want to toss out that I think the ps *have* had some improvements. The ps took my ds' symptoms of emotional health very, very seriously, and they had all kinds of tools and plans to ramp up. Now I'm not saying they were dealing with the root problems, but no school could. (genetics, methyls, meds vs. whatever, etc.) But just for like would they have had evidence-based supports to use with him at this stage, yes. And these are all newer things, your social thinking stuff, 5 point scale, zones, etc. Our ps isn't very hip, and the SLP there is doing interoception work with the kids too! 

So it's not a flat definite thing now that a 7 yo going in would lack services. The things we talk about here on the boards are things the ps around here ARE DOING. Now some schools are better than others, yes! But at 7 I think they're making a lot of effort to support in a really compassionate way. Maybe the op would luck out and her ps would really be doing a lot of evidence-based practices. She won't know without touring and getting the IEP set up and seeing what they can offer.

[PeterPan]

Btw, you ran genetics on some of these kids, right? But no psych evals? That sensory stuff that is making her fly off the handle can calm with some things. OT, yes, sure. And interoception work, sure. But also ADHD meds can help anxiety and the sensory. Is she hyper-responsive or hypo-responsive? My dd's sensory is MUCH easier for her to manage on her ADHD meds. And her anxiety drops too, which you wouldn't have predicted just to read online. They always make it sound like meds bring out this or that. No on her the anxiety improves because her ability to function improves. Her anxiety was over difficulties in function, so improving function drops her anxiety.

So you may have some paths like that. My dd is FINALLY trying 5HTP. I had been super begging her to for ages. She really likes it. I keep my ds on a stiff dose now with a time release that lasts 12 hours. I'm also fiddling around with l-tyrosine for him. It's a precursor for dopamine and there has been some research on using it instead of vyvanse. If you have genetics to go through, maybe adding the next step to the plan could help calm things down.

Fwiw, I have always kept Calm Child on hand for my kids. When I can't figure things out or a solution isn't apparent, thats what I use. It's chamomile, so the tea would work fine too. Safety and peace are good. 

Is she having a growth spurt? My ds just had a flare-up, but he had a growth spurt.

[Ausmumof3]

I think you can try school if that’s what’s needed and bring her home if it doesn’t work.  The other thing is, would it be worth just taking a massive break from school and start again fresh a bit earlier in summer?  Try to squish some natural or play based learning in.  I’m not normally one to advocate that but I know there’s no way I could handle three hours of tears for half hour of work.  If she’s that anxious the learning is likely to be ineffective anyway.  

Of course that depends if that’s likely to destabilise your other kids routine but at only seven it may not hurt to have a couple of months of just reading aloud and some play based math and a handful of documentaries.  My seven year old only does around an hour of really solid academic stuff daily.  He sits in for history and science and we do some read alouds and memory stuff but that’s it.

[Pen]

I would try putting her in now (even though toward end of school year) and see how things are for everyone.  With that knowledge you can decide on next steps.

There’s no way to know without trying it.

[Lecka]

KI have thought about this a little more.

For me overall, I need to do what is best for my kids.  This is not always my preference.  This is not always what is easiest on me.

My husband will often know something is not my preference or not what is easiest on me, and then he will want things to be more what I would like and more what would be easier on me.  

And my husband has a good point.  A lot of things can be perfectly fine for my kids while also fitting what is going to be more my preference and more what is going to be easier on me.

There are a lot of times when he is right, I could relax a little.

But on the other hand, there are also a lot of times when I am right, I need to be doing things in the way that is most stable for my kids, and the most what they can handle.

I think your husband is seeing:  you need a break; you desire to homeschool.  Those are two very important things and I think your husband is probably very correct in seeing this.

*If your daughter can have school work out for her* then I think this is a good thing.  I think you absolutely should be able to have a needed break from your daughter — which often kids benefit from too! — and still be able to homeschool your other 3 kids, as is your preference.

The only problem is — your daughter has sensory issues and anxiety, and so you do not have a clear cut “she’ll be fine in school.”

Its just not a clear-cut “she’ll be fine in school.”

 Now — that can be okay too, if she’s okay in school and you need a break.  This is reality for a lot of families who do need a break and whose kids are okay in school.  I talk to parents like this and it’s like — they could be doing more at home, in theory, but things just weren’t going that well and everybody benefited from a break, and from the very high structure, predictability, and same peers of school.

My older son is better now but didn’t do well at all with new situations or new groups of kids when he was younger, and any thing that was weekly or lasted one week ————- he could never get used to it.

But he could get used to school, his teacher, and the kids in his class, because they were all the same and it was much easier on him.  

So for kids who need high structure and high predictability, I have talked to parents who would  have loved to do different things and do a lot of things, but there kids did not adjust well.

Okay, but I also know parents who have had to take their kids out for sensory.  Younger kids..... it is hard to get around sensory in a school, if it is that she is sensitive. 

Both my sons are more on the sensory-seeking side and it’s a lot easier to add sensory activities for them, than to take away for kids who can’t handle it.

There ARE things to do and things can work out! Absolutely!  It happens!

But it’s just that ——— this is not a clear-cut “she’ll be fine” situation.

I think it’s just something where — if it were my husband, he would not be thinking about these things, he would just want me to be doing better and see things hard on me.  

Edit:  I tend to agree with Pen and think it’s worth a try because it could work out.  OR — maybe they figure out some good supports, since that is their job (ideally), and then you use the same supports at home and see improvement.  That is always my fantasy and sometimes it happens that way.  But also sometimes people realize they had a better handle on things at home!!!!!

Also both my sons have/had mixed sensory profiles.  Some kids improve with age!  Mine have.  Age 7 can be a mismatch kind of age.  She could possibly do better when school gets more about seatwork than activity centers, some kids with sensory sensitivity are that way.  

What I mean is — when most things are sitting in one place, it cuts out a lot of transitions and a lot of noise/movement.  That is a 3rd/4th kind of thing.  

A lot of kids who have issues sitting on the rug in K do fine when they no longer sit on rugs for story time because of moving up a grade.

There are a lot of practicalities like that and 7 can be an age where there are still more sensory needs and there are also still more sensory demands.  

IF that is the kind of sensory/transition kid she is.  Some kids are and I am just mentioning it if she is.  

Edited March 24, 2019 by Lecka

[PeterPan]

3 minutes ago, Lecka said:

“she’ll be fine in school.”

Reality is "fine in school" probably isn't going to happen till they ramp up supports, and that's going to depend on how generous the school is and how fast they are. We've had people walk in and their kids are given an aide day one, fast-track evals, IEP, everything. And then there was us with the IEP team with their heads in the sand, stretched to snapping. So it could be a year before that happens or it could be super fast. Probably will be somewhere in the middle and she'll have to stay on it and fight the fight.

Remember, the school only has behavioral tools. They are not p-docs and they are not geneticists and MDs. If your dc needs a medical solution to do better, you have to get the medical solution. If you put her in a situation that can only offer a behavioral solution, of course it's going to be frustrating. But behavioral is important too and safety is important.

If the dc needs medical help (meds, genetics, something), then are you so distracted you're not in a position to make that happen? What would it take? 

Just me personally, but if I were enrolling one, I'd enroll all. Then it's not personal. You just say mom needs a break and they ALL go. Preschooler goes to the Y for preschool. Everybody goes. Then you have time to deal with this medical angle, make private evals happen, fight the IEP fight.

I'm sorry it's hard. Your brain is probably swizzled. Choose safety and make a choice that gives you a reasonable game plan. You're not making a choice for the rest of her life, only for two months. 

[Lecka]

I had a period when both my boys were high needs.  I got a break from my youngest during his pre-school.  I had great quality time with my daughter while he was at pre-school.  If he wasn’t at pre-school, I couldn’t have time with her.  She thrived with that time.  I can’t imagine not having it.

Then my oldest son got major quality time with me for 1-2 hours in the evening when I got the little kids laid down.  

I would never have had the energy for that if he had not been in full-day school and my younger son hadn’t been getting services.

So in that time of life, I needed some time when some kids were in things, to allow me to be able to spend good time with each of them.

We had a lot of issues and there was almost nothing we could do in a group.  I also would be like a zombie at night before my younger started pre-school.  

[Lecka]

I would also say — for my oldest — he knew he was getting that time with me in the evening.  He knew all my attention would be primarily for him.  I was going to read to him and talk to him, etc.  

He needed that.  

So I have had a good experience with having a higher needs kid at school, and then being able to really focus on that kid in the evening and have a good relationship.

Where in the day it could just be one thing after another.  

Its hard to explain but I think it can be great if the other 3 get good attention in the day, and then their buckets are full and you have a little break, and then you focus on your daughter after school.  

[4KookieKids]

15 hours ago, texasmama said:

 We were very fortunate to have a therapist who  understood the role of sensory processing and retained reflexes and was willing to put the time into treating specifically that.  If the current OT does not treat these sensory issues, you may need a different one. Not sure what the OT worked on with your DD.  My son’s OT understood these principles better than I did. 

Mostly zones of reg stuff. Problem was that dd knew all the right answers to say, but can’t apply them. So they told me at this point, the balls in my court to make her implement the things she knows.

14 hours ago, Lecka said:

My kids including my son with autism are in public school.

The thing that gives me pause is sensory.  This can be hard if she just can’t fundamentally handle being around too much activity at her age.  

I think it can work but I think that if her sensory is a sensitivity (which it often is with anxiety) (my son was mostly under-reactive for sensory which is just fundamentally easier to deal with in a school setting).  

You can also put your other kids in school and focus on her!  Just to say it is an option.  

I have been really, really happy, overall, with my son in autism programs, though sometimes I have also been very, very frustrated.  

If she is anxious at school or anxious when she gets home from school, you are going to have to take time to deal with that.  It is just time-consuming.  You will need to coordinate with school etc etc etc.  

Thanks for this. It’s helpful.

9 hours ago, PeterPan said:

Ok, here's my two cents. My ds has an IEP, and reality is for her to enroll she needs to have evals through them and needs an IEP. You have two or three paths. 1) Make a formal written request to the school, get an IEP (120 days, boom done) and THEN decide whether to enroll her. Now is the time to start because they're going to kick and scream about the summer gig. Force their hand, hold to the 120 days, get it done. 2) Get private evals first to help you advocate during the IEP. If you do that, you're depending on your finances, insurance whatever to make evals happen and could have waits that could go much longer than the 120 days of the IEP process. So you'd want OT, SLP, and psych evals, and doing all that would be many months. I like private evals, but are you on waiting lists or have you had them? 

Path 3 is just throw her in now. Monday morning. Just walk her in. Now part of it will suck because my guess is the schools are about to go on a testing binge. On the other hand, they'll get a lot of data. And really, the last month or so the schools seem to have a lot of FUN! Seriously. Like around here they do bounce houses and field days and field trips and so much stuff. It's a pretty happy time. If your dh wants to just change the dynamic immediately, that's what you could do. Just walk her in, enroll her, boom. BUT WHEN YOU DO THAT also had them the formal written request stating you suspect disabilities and beginning the IEP process. They could say they want to observe her for a grading period. If you go in with evidence, that can help. They have the right to say they don't have evidence and want to observe her first since you're enrolling. If they do that, they may begin RTI if they see anything drastic.

There's a lot of good that can come with making a move, some kind of move. I will tell you though that the unfun position you're also in is that they aren't going to see you the way you see yourself, at least not initially. Like you know you're a hard-working, diligent mother. In our area, 60+% of kids live below the poverty level and some things are the norm that just make school officials pretty much think they're seeing that (neglect, etc.) everywhere. So honestly they were pretty snide with me and pulled the "we're professionals" crap, which got wearisome. And you won't actually know what will happen the first how many weeks, because she'll be in sort of a honeymoon phase with the novelty. But if they're trying to eval her when she's in that honeymoon phase, really that's not going to get you the best help. It's a known phenomenon. 

How dire is the situation? You're talking VT and didn't you have a VT thread? And did we have cautions about what you were doing, saying things didn't add up or something was amiss like retained reflexes? I can't remember. My first thought when I read your thread was just to stop schooling. Stop the VT, stop school work, stop everything. This has been a LONG HARD WINTER. Like it seems totally interminable. I would go on a cruise, take a vacation, just LEAVE, change the pace, change what you're doing.

No matter what, you have relationship, and if you drop demands and get back to relationship for a couple weeks, you can probably reclaim your peace. If you can't get back to a peaceful place even when you're NOT doing school work, you've got even bigger issues.

Now here's the thing. One, you don't know it's "dyslexia". It might be SLD Reading, but with the sensory issues you're describing and the extreme reactions maybe more should be on the table. Private evals are usually more objective than ps evals. Now is the team there ADOS-trained? You could flat-out ask. Some schools in our area now have ADOS-trained IEP teams, like the whole team, and they're doing a really stellar job identifying these disabilities. And some are humming and hawing and like well here's a GARS... Just a wide range of skill levels there. 

My ds has an IEP that reflects the broad range of his deficits. I can tell you that our ps would TRY and that they have quite a few tools to make the placement good. We had a point a year ago (literally, like 15 months ago) where things were really ugly and we walked right up to the line. I had a price from the autism school to finish out the school year and we were a go. Walking up to that line was GOOD for us. Being honest about what wasn't working was important. We prayed really hard and we had to get really honest. We found some answers that worked for him enough that we didn't do it. But would it have been bad? No, absolutely not. I wouldn't have been looking at it had it been bad. I could enroll him tomorrow and it wouldn't be bad. 

I think some schools are doing things you've read about and know need to be done and they're actually getting them done. I think people can be stretched thin. If you had to choose, would you rather homeschool her or the other three? If you had to CHOOSE, which way would you go? Which group (the 3 or the 1) would you do the most good for by having home? Which is the most likely to thrive in school? 

If you think you would do her the most good and the others could thrive in school, enroll the others. It's not a crime to do that. If you think she's beyond you doing by yourself while servicing the other three, then what are your paths? Like what are your brutal, this is what would really have to happen to make it work, paths? Around here I can pay $30 an hour (private pay) and get an intervention specialist. That will be someone who probably used to teach in the ps who now teaches privately. That person can come in your home and work with her from 9-1 and do her entirety of her school work. So she's home, she's working your worldview, your list that you generate with your worker, but way. I have one I'm talking with right now that I may hire and that's how I found her. 

I would not continue doing what you're doing. If she's that stressed, it's shutting down learning. It's ok to tomato stake, work on relationship, take a break, take a vacation, regroup, and figure it out. It's ok to put her in ps on Monday as a way to get that break. You just say hey I love you but I need a break and you'll probably have fun, here's your lunch pail. Think of it as summer camp in March and just use it as a break while you sort things out. 

Again, I'm sorry it's hard. How many more of your kids are going to be this hard? Advocating through the school system will be another kind of hard, but at least it's a manageable hard. It takes a lot of work to advocate for a strong IEP that addresses all the areas. It's not like a copout or doing less. 

Thanks foR the encouragement that any change we make might be a good one, and that we do have more options than I was previously considering. I’m honestly not sure who would tynhrive in school and who not. 

Part of my hesitation in trying to sort this school stuff out now is that we are likely moving out of state this summer, so anything I do now doesn’t really carry over to next year anyway. She’s by far my most difficult child, though, but st least two other kids do also need significant support, which makes me feel like a juggler who’s constantly dropping balls because people keep adding more balls to my rotation. Lol.

And we actually do know it’s dyslexia, from having an SLP administer the ELLA and looking at phonological processing and phonemic awareness. 

Weve completely stopped VT for now because it was such a struggle, but now we have the same level of struggle for reading! 😛 I haven’t checked RR in the last four months, but as of for months ago we had integrated all that weren’t previously.

8 hours ago, PeterPan said:

Sigh. One, novice therapist. Two, how long are the sessions? Three, is the OT actually making any demands? The behaviors aren't coming out because the length of the sessions aren't pushing her and the level of demands aren't maxing her out to require supports. In other words, the OT is keeping it comfortable. 

My ds can be really joyous to work with, but a professional with enough skill can intentionally take up that level of demand and BOOM bring out behaviors. She's probably pulling it back and not going there. It wouldn't even be smart for her to go there, because if she pushed it that far your dd would become non-compliant and not want to go back.

I like our OT. She has advanced training in sensory stuff. They went through the zones of regulation material. But there was definitely nothing challenging that she asked of dd. So dd spent the whole time smiling and laughing and joking and otherwise have the time of her life in squeezy swings and other stuff like that. 🙂

8 hours ago, PeterPan said:

Btw, you ran genetics on some of these kids, right? But no psych evals? That sensory stuff that is making her fly off the handle can calm with some things. OT, yes, sure. And interoception work, sure. But also ADHD meds can help anxiety and the sensory. Is she hyper-responsive or hypo-responsive? My dd's sensory is MUCH easier for her to manage on her ADHD meds. And her anxiety drops too, which you wouldn't have predicted just to read online. 

No genetics, yes evals. Dx: anxiety, depression, dyslexia. In two weeks she also has an ADOS scheduled.

6 hours ago, Ausmumof3 said:

I think you can try school if that’s what’s needed and bring her home if it doesn’t work.  The other thing is, would it be worth just taking a massive break from school and start again fresh a bit earlier in summer?  Try to squish some natural or play based learning in.  I’m not normally one to advocate that but I know there’s no way I could handle three hours of tears for half hour of work.  If she’s that anxious the learning is likely to be ineffective anyway.  

Of course that depends if that’s likely to destabilise your other kids routine but at only seven it may not hurt to have a couple of months of just reading aloud and some play based math and a handful of documentaries.  My seven year old only does around an hour of really solid academic stuff daily.  He sits in for history and science and we do some read alouds and memory stuff but that’s it.

 

This was my husbands other idea. Just break from work and focus on building relationship up again, since it’s taken a real beating from so much conflict.

4 hours ago, Pen said:

I would try putting her in now (even though toward end of school year) and see how things are for everyone.  With that knowledge you can decide on next steps.

There’s no way to know without trying it.

It’s true. And I guess end of the year stuff gives us a short trial at least without committing to a full year.

[PeterPan]

Just now, 4KookieKids said:

Mostly zones of reg stuff. Problem was that dd knew all the right answers to say, but can’t apply them. So they told me at this point, the balls in my court to make her implement the things she knows.

That means she needs Interoception work. Mahler is now doing workshops with Kuypers, back to back, Interoception to create the AWARENESS so the kids can APPLY the Zones. 

2 minutes ago, 4KookieKids said:

we are likely moving out of state this summer,

That would make me more inclined to do the school placement. It's a temp decision, buys you some time to look at more options. If they happen to get an IEP done before you move, then you port the IEP and you get to update it when you get to the new school. So it's actually good, because then you see what one team is thinking, have some info, and then see how the next school would handle it. It could be really good. I hear so many differences in schools and that would be a pro to me.

3 minutes ago, 4KookieKids said:

dyslexia, from having an SLP administer the ELLA and looking at phonological processing and phonemic awareness. 

Ok, so they'll say that about my ds and yes it was diagnosed. But the deeper issue is the DLD from the ASD. It wasn't really, really apparent on him till he was more like 9. We saw the language issues, but his ability to memorize was masking them. Basically he had to get to where his peers pulled ahead and he began to fall behind. So reading is hard for my ds, but it's the language issues. That's all we work on now is language, and I would NOT have anticipated that was the case at 7. At that point he still had enough memorized language to mask.

6 minutes ago, 4KookieKids said:

Weve completely stopped VT for now because it was such a struggle, but now we have the same level of struggle for reading! 😛 I haven’t checked RR in the last four months, but as of for months ago we had integrated all that weren’t previously.

Good on stopping. And stop asking her to read. I'm just saying stop until you get answers. The world will not end. Read aloud to her and have her narrate back. See how that goes. Don't do any forced reading until you have a multi-factored eval, that would be my advice. And yay on getting the reflexes integrated!!!

So you can begin interoception work as soon as you get the materials. I would do it with all your kids together, boom. And you can read aloud to her. And do handicrafts and things that go well. That's what I would do if you keep her home. You have choices, but I'm saying if you keep her home, until you have multi-factored evals I would do things that go well, things that promote compliance (small tasks that you do with her like helping her put away her socks or sort laundry or feed the cat or put away dishes) and read and play and do narrations. Lots of play. 

9 minutes ago, 4KookieKids said:

OT. She has advanced training in sensory stuff.

That's awesome! Now get her on board with Interoception. She'll look it up and be thrilled. If she'll do it for you, that would be AMAZING. It might be life-altering. They can run through all of phase 1 (awareness of each of the body systems) in 8 weeks. Seriously, 8 weeks. 

11 minutes ago, 4KookieKids said:

In two weeks she also has an ADOS scheduled.

Ooo, this is good! And will the team doing that do more thorough SLP evals? I would push for this. You want something more thorough for language like the SPELT (structured photographic expressive language test) and the TNL (test of narrative language). Be pushy. 

I hope you can get some answers. Sometimes these things slide. It's not absolute, like oh today they diagnose it and it sticks. We have LOTS of kids (kids I know irl, kids here on the boards) who have this unfolding picture. No matter what they say, the interventions are the same. They could say ADHD or ASD or mental health or anything and she still needs interoception work. The techniques now are overlapping across the labels and the labels overlap. Like right now I'm researching schizophrenia, and that's really an ugly topic no one wants to talk about. But reality is the genetics, the labels, the strategies all overlap. So don't be too pigeon holed or focused on the label. Just get the intervention she needs.

New stuff is constantly coming out. I'm reading a book that was written maybe 10 years ago, and the publisher doesn't sell it and nobody even uses it, even though it was endorsed by a big name (Brenda Smyth Miles, wooo) and all that. And the techniques are good, actually great, but I read the book and can see where it's kind of incomplete. And in it's time this book was probably WOW. But now we have more materials, more innovation, and we're like ok that was a piece but we see more fully.

So you get one intervention and you're like ok that was a piece, but now I need another piece. You don't stop.

[PeterPan]

16 minutes ago, 4KookieKids said:

This was my husbands other idea. Just break from work and focus on building relationship up again, since it’s taken a real beating from so much conflict.

I really like that he's collaborating with you and listing options! You're hearing a lot of pros and cons here about options. I'm going to say I'm not in the super pro school camp. I was faced with it. I'm in the SAFETY camp. If pulling back, getting back to what works with her, focusing on pairing and relationship will be safe, then that's great. If even that isn't safe, then make a safe choice.

At the very least, it sounds like you need some HELP. This is the stinkin thing, that until you get a diagnosis from somebody you have no coverage to bring in help. Like we brought in a behaviorist before we began the IEP process. We had been diagnosed, but we were getting conflicting opinions from people. Bringing someone into our home who could work with him and see what was happening in the home was helpful. Sometimes that person can then fill out forms and help get things sorted out. Personally, I find behaviorists are sometimes more attuned to these issues than psychs.

So yeah, if he's collaborating and you're listing out options, that's really good. What things are going well with her? Like if you backed off on demands and worked on pairing, what would that look like? And who would take care of the other kids while you did it? Do you have a granny or a church member or someone?

[PeterPan]

With my ds, when we're working on pairing, I'm going to follow his lead, keep demands pretty low, and just sit with him and play. Sometimes it's not even play. Sometimes it's just sit with him and watch tv together.

Edited March 24, 2019 by PeterPan

[4KookieKids]

8 minutes ago, PeterPan said:

So yeah, if he's collaborating and you're listing out options, that's really good. What things are going well with her? Like if you backed off on demands and worked on pairing, what would that look like? And who would take care of the other kids while you did it? Do you have a granny or a church member or someone?

I don’t know what pairing is?

i have a few friendS that step in when we really need it, but no family or anything that could step in more often. A few older church members have tried to offer us childcare for us to take a break or go in a date or something on occasion, but my kids are enough of a handful that they usually don’t offer to watch them again after that.

[Pen]

 

30 minutes ago, 4KookieKids said:

This was my husbands other idea. Just break from work and focus on building relationship up again, since it’s taken a real beating from so much conflict.

It’s true. And I guess end of the year stuff gives us a short trial at least without committing to a full year.

 

Even if start of year you would not need to commit to a whole year. But right now is about perfect for automatically giving an end point in a couple of months ish with out stress of ending before summer.  And also enough time to be able to try to work on adjustments that might be needed.  It could give a breather for you and other kids at homeschooling, and could allow you to just be mom to dd7 not mom and also school master.  It also will give additional people who might have help to offer.  

[Pen]

I’d tell school pretty much all you put in OP— dyslexia, panic attacks, sensory overload etc.  As panic seems to be number one issue (?), maybe a doctor could help with some medicine or something on that part of it.  And maybe a therapist with emotional end.  

 

[texasmama]

Data point - some ADHD meds increase anxiety. The research is out there. Limited for time so just tossing this out. 

[texasmama]

2 hours ago, Lecka said:

KI have thought about this a little more.

For me overall, I need to do what is best for my kids.  This is not always my preference.  This is not always what is easiest on me.

My husband will often know something is not my preference or not what is easiest on me, and then he will want things to be more what I would like and more what would be easier on me.  

And my husband has a good point.  A lot of things can be perfectly fine for my kids while also fitting what is going to be more my preference and more what is going to be easier on me.

There are a lot of times when he is right, I could relax a little.

But on the other hand, there are also a lot of times when I am right, I need to be doing things in the way that is most stable for my kids, and the most what they can handle.

I think your husband is seeing:  you need a break; you desire to homeschool.  Those are two very important things and I think your husband is probably very correct in seeing this.

*If your daughter can have school work out for her* then I think this is a good thing.  I think you absolutely should be able to have a needed break from your daughter — which often kids benefit from too! — and still be able to homeschool your other 3 kids, as is your preference.

The only problem is — your daughter has sensory issues and anxiety, and so you do not have a clear cut “she’ll be fine in school.”

Its just not a clear-cut “she’ll be fine in school.”

 Now — that can be okay too, if she’s okay in school and you need a break.  This is reality for a lot of families who do need a break and whose kids are okay in school.  I talk to parents like this and it’s like — they could be doing more at home, in theory, but things just weren’t going that well and everybody benefited from a break, and from the very high structure, predictability, and same peers of school.

My older son is better now but didn’t do well at all with new situations or new groups of kids when he was younger, and any thing that was weekly or lasted one week ————- he could never get used to it.

But he could get used to school, his teacher, and the kids in his class, because they were all the same and it was much easier on him.  

So for kids who need high structure and high predictability, I have talked to parents who would  have loved to do different things and do a lot of things, but there kids did not adjust well.

Okay, but I also know parents who have had to take their kids out for sensory.  Younger kids..... it is hard to get around sensory in a school, if it is that she is sensitive. 

Both my sons are more on the sensory-seeking side and it’s a lot easier to add sensory activities for them, than to take away for kids who can’t handle it.

There ARE things to do and things can work out! Absolutely!  It happens!

But it’s just that ——— this is not a clear-cut “she’ll be fine” situation.

I think it’s just something where — if it were my husband, he would not be thinking about these things, he would just want me to be doing better and see things hard on me.  

Edit:  I tend to agree with Pen and think it’s worth a try because it could work out.  OR — maybe they figure out some good supports, since that is their job (ideally), and then you use the same supports at home and see improvement.  That is always my fantasy and sometimes it happens that way.  But also sometimes people realize they had a better handle on things at home!!!!!

Also both my sons have/had mixed sensory profiles.  Some kids improve with age!  Mine have.  Age 7 can be a mismatch kind of age.  She could possibly do better when school gets more about seatwork than activity centers, some kids with sensory sensitivity are that way.  

What I mean is — when most things are sitting in one place, it cuts out a lot of transitions and a lot of noise/movement.  That is a 3rd/4th kind of thing.  

A lot of kids who have issues sitting on the rug in K do fine when they no longer sit on rugs for story time because of moving up a grade.

There are a lot of practicalities like that and 7 can be an age where there are still more sensory needs and there are also still more sensory demands.  

IF that is the kind of sensory/transition kid she is.  Some kids are and I am just mentioning it if she is.  

Bingo. 

[texasmama]

One more thought to echo others - it is just fine to ditch formal schoolwork at this age for a time to work on strengthening the relationship, pushing the reset button, exploring options, getting professional feedback, etc. 

In fact, it is likely best, as digging the rut deeper is not helping anyone. It is reinforcing the negative experience for both of you and taking time and energy from your other kids. 

Sometimes the best thing you can do is stop and regroup.

[PeterPan]

3 hours ago, 4KookieKids said:

I don’t know what pairing is?

i have a few friendS that step in when we really need it, but no family or anything that could step in more often. A few older church members have tried to offer us childcare for us to take a break or go in a date or something on occasion, but my kids are enough of a handful that they usually don’t offer to watch them again after that.

So pairing is an ABA thing, it's when a person makes the effort to build a relationship of trust, 1:1, with the dc so the person can then begin to make demands (getting them to do things). So you as the parent pair with your dc. On the boards people will kill it tomato staking. For some kids a little bit gets there and it's solid, and for some kids it takes a lot more effort and can need to be worked on, especially if there are incidents that erode trust. And that's really not about right/wrong, like were you bad to have her doing the thing. It's just she got stressed and that trust that the two of you can work together and her still feel peaceful is gone. So you rebuild that relationship.

Yes, my ds is not someone that just anyone can watch. They'd like to think they can, but either they're not ready or they think they're ready and come down so hard they make problems. With my ds the best person is someone who's prepared to "pair" to be very relational and take the time to build trust. I have a SIL who does this naturally, which is kind of unbelievable. She has literally been good ABA for him, taking him on outings, doing lots of motivators and then making demands. She's just naturally good at it. But I know people I can't let near my kid because they'd cause all kinds of problems. And permissiveness, oh my that doesn't work. He fills that power vacuum and takes over. Most people though think if they're permissive he'll just figure out he wants to comply, haha.

[PeterPan]

Btw, if you go to Care.com you can place listings that actually are under the category of SN and say what you need. You'll need to up the pay a little bit, but you might get some responses, sure. I have gotten some really high quality replies that way. We've got a worker now who is a doctor student in an OT program. Just had another contact me who is an IS who no longer works in the ps since she moved. People just have their reasons why they're available.

 

[Lecka]

Nobody responded to my care.com when I described our needs.  Ha.  

I like the idea of building relationship.  Pairing is basically building relationship, building positive associations.  It is an ABA term.  

Okay, my thoughts.

This can be incredibly challenging when high support is needed.  It’s not necessarily going to be *easy* to just do fun things and follow a routine!  

With executive functioning challenges kids cannot manage their own time well or complete activities in a self-managed way easily.  This can make things hard.

With anxiety it can just be hard and require a lot of support.

I do like this idea a lot.  

It’s just — will it be easy?  Maybe not.  Will you have less stress if you reduce academic demands, when your daughter is anxious?  It depends if she’s anxious over academics or not!  If she’s just anxious over various things (like social situations etc) then your answer is not going to be “relax about academics” the way it would be for straight dyslexia where that really might be the primary cause of anxiety and reducing it would have a direct cause/effect relationship with the anxiety.  

If that’s the situation then — I think that’s great.

But if that’s not the situation then reducing academics may not reduce anxiety.

I am familiar with social anxiety, and anxiety that goes along with sensory.  Reducing academics isn’t necessarily going to help that a ton.  

Got to go.

 

 

[PeterPan]

To follow up what Lecka's saying, here's the thing. Like say you go to TPT to Christine Reeve's store https://www.teacherspayteachers.com/Store/Autism-Classroom-Resources-christine-Reeve and you get her workstations and her visual schedules. I used them with my ds and they're very nice. And say you put into workstations things you know she enjoys. Well with someone like my ds he'll STILL buck and STILL have behaviors. Even if you put BREAK on the schedule and the choices for break are Nintendo, air hockey, and playing with balls, I kid you not he'll buck. 

So it's not like lowering demands solves everything for every kid. It will tell you a lot though, that's for sure. And maybe you already know that, deep down, how far this extends. Someone like my ds needs a lot of structure to do well, and following through with that structure takes energy. Like if we put a paid person with him, we NEVER let them work more than 3 hours. He's just challenging and drains people. I couldn't work with him and do anyone else. You could in a classroom because there would be aides and a ratio to make that happen, lots of physical structures. But in a home? No way, can't be distracted.

But maybe op's situation is such that when the dc has tasks that are doable she's really congenial. For her sake that would be nice. I don't know. I think that's part of the soul-searching.

So yes, Lecka is calling it anxiety, and that's right now what our people call it. They don't think it's ODD and all the way to that, because it *does* respond to techniques for autism and anxiety. (structure, high supports, clear plan, small chunks of a doable plan) It just takes a person who's prepared to do that with him.

When my ds gets time to himself he "falls into the aut." There's a book Let Me Hear Your Voice that talks about the aut of autism, the withdrawal, the being in your own world. When my ds has time too himself too much, even if he seems to be liking it, he falls into the aut. So we can never just let down our guard and let him go a long time. Like a regular kid you might take a nap on Sunday afternoon for 3-4 hours and let him play. Nope, I'm gonna check on him, touch base, talk, make small demands, etc. periodically. Otherwise I'll go down and he has fallen into the aut.

So when a kid is in the aut, pulling them out, reconnecting, rebuilding that trust, it can go kinda fast even if the person brings enough energy. But it's part of what is behind what Lecka is saying that just dropping demands might backfire. If this dc is on the spectrum, dropping demands could make it WORSE. Pairing, reconnecting, doing things with her, that will help. 

My ds will eat up all the attention and interaction he's given. A good thing about school is they're set up to give that level of interaction. They can pour it on, with aides, pullout sessions for intervention, etc. It can really help with that and step up that level of interaction.

[PeterPan]

14 minutes ago, Lecka said:

Nobody responded to my care.com when I described our needs.  Ha.

Well truly, lol. One ad I got a reply in a week. Another it was like 9 months seemingly. It just varies. Also depends on where you are. We have a bunch of universities around us, so there are times when people will be looking. Right now people are starting to line up their summer gigs, so they're looking. 

I was talking with a friend about whether offering good pay is better or worse. She said it scares people off, lol. I think it doesn't hurt on Care.com, because it's pretty good money, all things considered. But you'd have to know your rates are fair for the area. I think there are people working through the state system for providers that are getting paid a lot less than what I list at. Even with that, yeah, it can be a wait. It seemed like a miracle when we finally got our current (fab) worker. But I placed an ad last week and got a high quality response in days, so go figure.

[4KookieKids]

Well, DH backtracked on sending her to school and is just strongly encouraging us to take a break and go for bike rides and hikes and spend time together outdoors and having fun. 

I need to figure out how to “take a break” in a way that’s meaningful to me while still having the structure that my kids need.

So I doubt we plop her into school this year (school by us is out in 7 weeks anyway), but I will keep thinking about and mulling over all of this as I think about what would be best for next year. 

Thank you all so much for all of your advice, encouragement, and wisdom.

[PeterPan]

I'm glad you've agreed on a path! You have the evals in 2 weeks, right? So do you basically just have 1-2 weeks now to take care of? 

How do your kids respond to projects? Like if you said hey we're gonna deep clean the house (which gives you a way to make demands but also lets them off the hook for school work) how would they respond? That kind of break is restorative for me because it also gets the house back in order.

 

[exercise_guru]

I am not sure how to help with the topic because I have a kiddo that has high anxiety CAPD and is Public schooled. I can only tell you what I have been doing that has given me some pretty amazing results. Please disregard what I write below if you aren't interested in Fast Forword or Nutrition. If I had not lived this life I would never have believed it. 

I switched my whole family to the eating plan in this book . 

Disease-Proof Your Child: Feeding Kids Right Kindle Edition

by Joel Fuhrman M.D. (Author)

 

I was eating the program to overcome the side effects of Chemotherapy and after that I needed to make one meal. If you homeschool it is so much easier but it is basically a Whole foods diet with beans rice corn and such . I did try the elimination diet that many people do here ( sorry can't remember the name) but it was more removing food instead of adding food and eating more simple food. 

 

Behavior and emotion wise Dairy and all of the casien/ whey containing  products are the worst.  I had been on this Whole foods Vegan diet for around 6 weeks and It made me a different person. I was able to get off all antidepressants and ambien for sleep. IT stabilized my brain in ways I still can't explain. I was in a dark place when I started with high anxiety and now 6 months in I am wake up level and optomistic and go through the day this way.  That is when I decided that I needed to move my family over to this way of eating. My son and daughter have so much anxiety I am hoping that it will help stabilize them so that they can function in life. My son is so much better likes soo soo so much better and it has only been a few weeks.  My youngest is very sensitive to fructose and food coloring. I do not give him any of that stuff. I eliminated all processed stuff and dairy but to make my husband happy I still serve him one serving of lean meat a day.  I don't believe either of my kiddo's have gluten sensitivity so I still have that but I try to keep it out of recipes. ( if anyone needs suggestions I love the forks over knives " cookbooks and video) the food is delicious. Its basically rice with some delicous toppings, potatoes etc. 

 

As for the learning disabilities stuff. I am sure everyone has read my post about FastForword so I am becoming annoying but there was another aspect that this program really helped with. It taught my son to focus his auditory attention and tuned his brain to sound. About 3 weeks into Fast Forword you could tell he was really concentrating and leaning into the sound part. There were times where he would cover his eyes and just listen to the program to really focus.  Focus and concentration where a huge challenge when we started this program.  He was at grade level before FF and after now reads at a lexile of 1250 ( age 11) He was probably hidden dyslexic because I had to teach him to read at home using my own invented method. When he would write he would flip his d and b and p and q and write his z backwards.  We have also done getty and dubay and that took high rewards to get him to practace . He doesn't flip his letters in writing after FastForword either. If you do try it don't go through the main FF site. They know nothing and charge way to much money. Go through a private coach because you get the program for an entire year and will pay less than going through the main site. Anyone can pm me if they like.

 

 

[exercise_guru]

I wanted to circle back to the homeschooling challenge  vs public school vs special school. I think it is worth evaluating and seeing what services would be available. Often they can teach far more at school than you can purely because they may have tricks that get the cooperation of your child.  I homeschooled my 2 oldest and can't homeschool my two youngest. My daughter is entirely uncooperative with me but awesome for other teachers. 

My youngest is fairly cooperative for teachers and tough tough tough to teach at home.  There is a medication that is for ADHD but its fare different from Concerta. I can't remember the name of it but I will try to look it up. There was a family in our church that tried it for their autistic child and said it has been heaven. I think it was strattera

is she willing to do computer programs? I like hearbuilder a lot and its very assessible. The graphics are decent and it might give you some time to teach the other two kiddos if you can find some good computer programs for her to do with some of her homeschooling. My brain is also saying "retained reflexes?"

 

Also if you have a treadmill and three kids homeschooling consider letting them watch a favorite tv program in the morning while they walk . I have tried very hard to get my youngest exercise in the morning because they say it really helps focus and attention as well as concentration to get that in before learning. 

Edited April 8, 2019 by exercise_guru

[goldenecho]

So, I just sent my kiddo back to public school.   He did not have nearly the level of issues you are dealing with with your child.   He had ADD and I suspect dyslexia but we still haven't gotten that diagnosed.  

I would suggest going through the process of getting your child assessed for an IEP  (may differ by state but we did this through the district, and did not need to sign up for school first)--that will give you an idea of what kind of services your child will ACTUALLY get.   This was what lead to our decision, in part.  Initially we were planning to work with a charter in our area to get our child some extra help and a few classes...but what was offered us seemed better (in some ways).   My child is now in a class with 10 students, mixed grades, one lead teacher and two aids (so nearly a 3 to 1 ratio).   He is among other kids who also struggle, so the class is set up to have ways for them to take breaks when they get frustrated.   He's done incredibly well.

Granted, he had come a long way already.   When we first started the crying and avoidance and general shutting down took nearly as long as our "getting things done" time (like you).   But gradually that got better.   He was still having occasional periods of shutting down/breaking down but most days were fine.   So he was in a much better place when we sent him.   The teacher he got had a ton of experience with kids with his type of needs, and also had homeschooled her own children a few years so "got" where he was coming from as a past homeschooler too (we lucked out with her).  

If you do decide to get your child evaluated for an IEP, I would do it as soon as possible because time is running out before the end of the year, and if possible you would want to observe the environment he would be in.  You might even ask if you could observe "examples of the type of classes your child might be put in" before they are done with the IEP.   We started the process around this time of year and our IEP was done the last week of school, so the class was sort of winding down when we got to observe, and observing earlier I think would have been more helpful.

Getting an IEP done in no way obliges you to actually take the services they offer.  You can do all this and then continue homeschooling...it's just a way to see what would be offered through the school if your child were to go.  

 

 

 

 

 

Edited April 8, 2019 by goldenecho

[PeterPan]

6 minutes ago, goldenecho said:

My child is now in a class with 10 students, mixed grades, one lead teacher and two aids (so nearly a 3 to 1 ratio).   He is among other kids who also struggle, so the class is set up to have ways for them to take breaks when they get frustrated.   He's done incredibly well.

I just wanted to say I'm excited it's going so well for him!!! That's what matters, and like you say sometimes the change, their ability to provide that level of support, it can really work. That's wonderful. 

[goldenecho]

On 4/8/2019 at 10:23 AM, PeterPan said:

I just wanted to say I'm excited it's going so well for him!!! That's what matters, and like you say sometimes the change, their ability to provide that level of support, it can really work. That's wonderful. 

 

Thanks!   It really is going well.  However, we got news this week that his teacher (the lead teacher, not the aids) is being let go.    Not immediately...at the end of the year.   But I'm really sad she isn't coming back, and frankly, angry at the school (maybe there's other reasons I don't understand but she says it was over missing meetings).   She was such a good teacher, I loved her outlook with the kids, and I'm heart-broken she's leaving.  There was a chance my son wouldn't have her next year anyways (it's mixed ages but the grouping changes based on how many students, and she might have been with younger kids next year)...but still.  Overall I've liked the school in general, not just this class (great policies, very involved principal, etc.) but I'm gonna be watching really hard next year to see if things stay at the same level of quality in this class.

 

Edited April 9, 2019 by goldenecho

[Lecka]

I’m in the same situation, my son is in a mixed-grade room, and I assumed he would have the same teacher, but I asked and they “don’t know their plans.”  

But there is another class and, in my mind, I could complain and they could move him to the other class, if things don’t go well.

But realistically — I think they have done a good job with hiring since we’ve lived here, so I am optimistic.  They have very low turnover of aids here, which is night and day from our previous district.  But our previous district had much, much, much better communication.  

I hope next year goes well, too 🙂