At my wit's end

[LilBearsMama]

Hi all. I've been a member for ages, but rarely post. Normally I don't even need to - I can read and search and find tons of advice that is super helpful and don't need to bother anyone. But title says it all - I'm at my wit's end. Please be kind (though I've always known everyone here to be, I'm honestly so tired of being blamed and so tired...just tired.) I apologize this is long. I have written it and rewritten so many times...

My son has challenges that seem to be really cropping up more with hormones. He turned 13 in May. I'm not going into the whole saga because I'll get angry all over again and end up crying and typing, but getting any help has been hard. My husband was diagnosed as an adult with Asperger's, though of course they don't call it that now, and it was only after that anyone took us seriously about our son. Hubby is on the spectrum, has ADD, bad anxiety, and dyslexia.

Our son has dyspraxia. Between them, his ped, OT, ST, and PT said "dyspraxia and it affects everything - for school purposes you would say apraxia of speech, dyscalculia, and maybe a bit of dyslexia. However, we see autistic traits as well and would classify him high functioning and needing support. Not as high as his father." He's also quite anxious. If we approach things best we know how from the way they did it - which is as if he were ASD - things work.

While it was heartbreaking, it was also freeing - we had names! Researching it all explained sooo much!

Fast forward to now. We're at this weird in between place. He's aged out of anything offered from the therapists. They don't know what to do. Driving hours is not an option - only one of us can drive, and that is hubby. And even that he's highly anxious and freaks when it's the city. At the time son was having therapy, we sometimes used Medicaid transport because hubby was at work. That was a nightmare, and son has now associated OT and such with pain, boredom, being forgotten and left someplace, waiting for hours (5 hour round trip) and I'm not sure I'd get him in the car.

His attitude is awful. In 2018, we lost three people - both my grandparents he was very close to, and his little brother who wasn't quite four months. A whole lot went on and it was over two years of utter chaos and misery. Our routines went out the window. I can't seem to get them back. It was really really bad and we're all suffering from ptsd I think.

Some of it I know is hormones. But he went from sweet and generally compliant and helpful to eye rolling, heavy sighing, stomping his feet, complaining. Everything revolved around four particular games. His dad and I are gamers, though we do not play a lot, and for a while it worked - we'd play with him an hour or two and get him outside after that. I work from home, but make sure to be up and moving. His dad's classes were online but again, he limited his gaming and was up and moving. Son could not - his life started to be only those games, and he was incredibly rude, angry, and downright hateful when asked to do anything else. Schoolwork was a nightmare. Chores the same.

He was reminded that he could play as long as the things needing done were done first and he was respectful if he was needed after that. He was welcome to say that he was in a spot he couldn't pause, as long as he was nice, paused when he could, and came to help. But he stopped doing that and was just plain ugly.

So hubby put in the rule that you can have playtime on the computer one hour on school days and two on non-school days. As much time as you want if it's something educational, or working on art or trying your hand at game programming. Otherwise there is plenty to do (he has clay, science kits, books galore, games, there's woods around us, art supplies).

So he's now gone to the extreme. The computer is his "disappointment" and he says he feels he's not even allowed to look at it. He refuses to touch it for any reason unless required for schoolwork. He's decided this "ban" has extended to music and all but a few channels on Youtube and streaming. He refuses to use his swing set, soccer goal, punching bag, art stuff, or anything else unless required. Won't touch a book unless required. Chores are immediately met with a rude "I'm sorry" when reminded (no matter how it's done, even if it's a text or a note). He likes a checklist but if looks could kill it'd turn to ash. Anything he is interested in if he even thinks it might be school related it suddenly is horrible. And so are we for ruining it. (This is true even if it's just a cool video we found about the ocean and we just happen to have it playing for our own sake when he walks in the room.)

He loves to spend as much time as he can telling me how angry he is (especially at his dad) and how he wants to strangle him. How he feels like a slave. How he feels like he's not allowed to breathe. Then he'll go have movie night with his dad (at his request, not dad's) and come back later and repeat himself.

We had diet changes that were necessary and he resents that. The computer thing on playtime he resents. He understands the reasons and when he's in a good mood and mindset he even agrees. (We focus on health in all forms, and explain everything because he always needs that. But it's still a fight.) He has now admitted that yes, he enjoys when we make him go for walks, yoga, and the martial arts lessons his dad gives him. And that he does recognize that we are not always on the computer but do other things. But I'm getting worn out listening to complaining all the time then being accused of not caring when I so much as yawn (because it's past midnight, for example.)

We had a child therapist see him when we lost everyone but she said he was fine. State community care has a loooong list. No child psychs nearby and his ped recommended the state (and to be honest, I despise them for many reasons.) Hubby has a mild heart attack whenever we must drive to the city, and it's a loong list for anything. I don't know how much is just hormones, how much might be related to trauma, to his challenges, or what. I thought maybe the school might help in some way, but at best they said 15 min a week of group speech, and to come back later when he's older basically for any evals due to time, money, and "you homeschool; you don't need us."

He refuses all activities outside the house. I do not have money to spend for something I can't get him in the car for. I thought maybe he was worried about money (because he does that) but even the free Lego group he refuses. His dad purposely chose 1 class only this coming semester both for his own challenges sake and to drive us around but we can't get him into anything. He refuses to try. We might be able to get him to a rec day set up for homeschoolers but only if I go with him. And even then, it'll be a fight to get him in and out of the car. Bribes do not work. Part of it is the virus - we haven't been able to get him a shot yet. He's reacted to shots in the past and the ped said not to do Pfizer but wait for the Moderna since neither of us reacted badly. He's our first point of care, but he doesn't seem to know where to steer us. He does at least say our son is much better off at home than in school with the schools here. At leas there's that.

So far we're being told things like "be more strict" and "don't listen to him" and "he'll be fine and you all just need to pray more." That last one sets my husband off every time. I'm not sure if our routine is not as strict as it needs be, if we need to treat him as younger (he does not truly step up to the plate when given responsibility, though he does better lately when I allow him to run out of clothes since he insisted he could do his own laundry without help. He's doing it now. And he's great at taking care of the rescue kitties and the dogs.)

I feel like I'm rambling at this point. I don't quite know what to ask for. I'm not expecting a robot. I don't want a robot. I would like not having to fight at least once a day. I dread this coming school year because he fights our summer routine...then tells me how much he enjoys it. And tells everyone who will listen how much he likes it! He BRAGGED to a neighbor about our geography teatime. But complained the whole time during it. The bragging was not prompted and he didn't know I was there, so it wasn't something he just said. I feel like banging my head on the wall. (I might have done that a few times.)

But my boy is at heart a sweet, caring, kind person. When we were regularly going to the tiny church he likes (build at the end of the Civil War,) he'd help set up dinners and clean up without asking. He carried choir books because older people weren't "allowed" to. He'll give someone the shirt off his back - then come home to accuse me of being a slave driver for asking him to take out the trash. He's great in an emergency. He's just breaking my heart lately and I don't know what to do.

Please don't judge. We're lost. We don't know whether to ride this out and keep doing what we're doing or what.

At least next year's school is taken care of. He helped choose his curriculum, and at least I don't have that worry over as well. (I hope.)

[Rosie_0801]

Honestly, Mamma, I'd tell him he was being revolting and I can't please someone who is working so hard at being impossible.

Then I'd remind him he's allowed to feel things that aren't true, but it's bad policy to believe things that aren't true. And hug him. And tell hubby to hug him too.

[LilBearsMama]

35 minutes ago, Rosie_0801 said:

Honestly, Mamma, I'd tell him he was being revolting and I can't please someone who is working so hard at being impossible.

Then I'd remind him he's allowed to feel things that aren't true, but it's bad policy to believe things that aren't true. And hug him. And tell hubby to hug him too.

I do make sure to tell him he's allowed to feel what he feels, but if he feels miserable he can't live there. And I do tell him he's choosing to punish himself - it's his own choice to not listen to music, etc. He just gets mad. I'm trying very hard not to engage too much or take it personally.
 

He gets hugs whenever he allows them. Maybe I should sneak up and hug him more.

[kbutton]

This is rough. He sounds like combination of a younger version of one of my kids and the current version of the other rolled into one. I am so sorry.

We have a tutor right now that is super well-versed in executive functioning problems, and he's working hard to get my son to take responsibility, work with his own brain, and to stop "annoying the masses" meaning to stop annoying other family members...all while very much being on my son's side. 

I have no idea how to find someone like this--it's been a pleasant surprise.

We still have more work to go to be functional, but it's helping. 

Pretty much everything the tutor does is applicable to DH as well, sigh. But he's listening too. We'll see what happens.

[PeterPan]

PTSD or depression? 
Are you wanting meds or genetics/supplements to treat this?

I think you’re going to have a hard time busting thru your behavior list till you deal with the mental health (depression and anxiety).

Youre wanting tele for services.

Have you looked at interoception ?

[Storygirl]

I'm really sorry.

Two things. I'm sorry to be short, but I am so tired right now and need to get to bed.

First, it sounds like new and better evaluations may be in order. I would suspect ASD and anxiety, based on what you've written there. It sounds like getting places is really hard for your family, and that the school has not been helpful, but if there is any way to update his testing, you might get answers that could lead you in some more helpful directions. I'm unclear whether the school actually did any evaluations, or whether they told you that they would not? In any case, going back to the school is an option to consider, to get some baseline testing done, though they may not be able to do everything that would be helpful. The school, by the way, is legally REQUIRED to test children who have suspected disabilities, even if they are homeschooled. But you have to request it in WRITING and not just ask them over the phone. If you need guidance about this, there are a bunch of us who have gone through the process and can give you more information. Even if the school will not provide all of the services or therapies that your son might need, you can still get good data from the tests that they could run for you.

Secondly, are you willing to consider medication? We had a miserable time with DS17 for many years (actually, forever), and to my surprise, medicating the anxiety has made a night and day difference for him. I hadn't even identified anxiety as something to target with meds (though I knew that he had the diagnosis), until one person that we were working with finally suggested that we look into it. I was very hesitant to add more meds on for DS (he already was taking ADHD medication), but I am so, so glad that we tried it. The anxiety medications have reduced his anger by 90%. Not kidding. DS also would refuse to go to therapies, but now he doesn't mind, and actually likes his therapists. This would have sounded like impossible crazy talk if you told me a couple of years ago that I would be saying this. He is also much more cooperative with schoolwork and chores.

I know what it feels like to be in a position where it seems impossible for things to change or get better, and where you don't know where to turn, and when the advice has not been helpful, and when the child is resistant. I've been there, and I'm sorry that you are in that place, and I hope that you can get some helpful advice here.

[Storygirl]

I meant to also say that you will get better testing and information from a private educational psychologist than you will from the school, but the school is a starting place, especially if you can't get to private psychologist. Schools can't always test for autism. If ASD is at play, sometimes getting the diagnosis can open doors for other services from the county or state, such as help with driving or with employment training, when he is a few years older. It may seem like having the diagnosis wouldn't matter or change things, but it can be helpful sometimes to open the doors to new kinds of help.

[LilBearsMama]

6 hours ago, PeterPan said:

PTSD or depression? 
Are you wanting meds or genetics/supplements to treat this?

I think you’re going to have a hard time busting thru your behavior list till you deal with the mental health (depression and anxiety).

Youre wanting tele for services.

Have you looked at interoception ?

I have looked at it but have lost a lot of the links I had. I'm not sure how to implement it. I work as a freelancer and my current contract is ending, which will temporarily put me at part-time instead of full-time work. I plan to drown myself in whatever I can then. The biggest hurdle will be hubby - "I'm fine so he'll be fine." And he doesn't want to spend money on anything that might be expensive if he can't 100% verify a credential or something. (Ronit Bird was a fight, until I found epub versions of the ebooks.) He's not meaning to be a hurdle, but I can't get always easily get him to see something.

Honestly, if meds is what is needed, I'll do it. If supplements can help, I'll do that. Melatonin was used years ago when he was little just to get him to sleep. Someone has suggested 5htp but I don't know if it's safe or would help. He does like things like lullaby or chamomile teas. They at least help settle his nerves. Insurance won't touch anything genetic related, afaik. But I will check into it.

[Rosie_0801]

I'd also keep tally marks for every stink eye etc I was given, and use those numbers in a "You might all think you are fine, but I AM NOT FINE" way.
Sometimes people forget the emotional labour. Sometimes people forget the person who fixes everything is a person too.

[LilBearsMama]

Just now, Rosie_0801 said:

I'd also keep tally marks for every stink eye etc I was given, and use those numbers in a "You might all think you are fine, but I AM NOT FINE" way.
Sometimes people forget the emotional labour. Sometimes people forget the person who fixes everything is a person too.

That's...actually a really good idea. I never thought of something like that.

[LilBearsMama]

30 minutes ago, Storygirl said:

I meant to also say that you will get better testing and information from a private educational psychologist than you will from the school, but the school is a starting place, especially if you can't get to private psychologist. Schools can't always test for autism. If ASD is at play, sometimes getting the diagnosis can open doors for other services from the county or state, such as help with driving or with employment training, when he is a few years older. It may seem like having the diagnosis wouldn't matter or change things, but it can be helpful sometimes to open the doors to new kinds of help.

I don't know how to do multiple quotes, sorry!

This is what I am hoping. The programs are not that great (and weren't helpful for DH, but he had no family backup - his family is of the mindset that he was just not hit enough) but might be for DS. We're in the same area we grew up in due to family and some other things. If all goes well, we'll be going to a better area in a few months. Crossing my fingers we can find something in my area of choice, because then there'd be some public transport, a secular homeschool group (which will make DH happy and keep DS from putting his foot in his mouth) and more programs. There used to be more things here, but as DS has gotten older they seemed to mostly move somewhere else. It's weird - it's like how when he was a preschooler, we could find no clothes in his size suddenly. Then he outgrew those and they were everywhere.

The school was both in person and via phone. Basically we were told at one point that he needed to be enrolled, which I knew was wrong, and that there was no point since he was homeschooled. Come back later, we don't have time, and so on. DH and I both went through these schools, as did my mom, and it was especially bad for DH, so he sees them as less than useless. I will contact them again and this time in writing. The school has not done evals. When I went to see them, I was asked for his standardized test and at the the time he was grade level overall (behind in math and ahead in reading and language) so they said it wasn't affecting him educationally. I have asked about the process via phone and in person and both times was told no. Third time's the charm?

I am not opposed to meds at all. DS cannot swallow pills, so that's an adventure, but if it'll help I'll grind them up and put them in his tea myself.

[Lecka]

Try in writing.  

[Storygirl]

You can look up who is in charge of the special education program for the school district. This department is sometimes called "student services" or "pupil services." Write a letter addressed to that person and either hand deliver it to their office or sent it certified mail, so that you can be sure they receive it.

Look up the Child Find law of IDEA (the special education law), so that you know what you are doing. Then write a letter saying that you are requesting evaluations for your child under the Child Find law, because he has diagnosed conditions that affect his ability to access his education ("access education" are key words). Legally, they have 30 days to respond to you and hold a meeting to discuss the request.

You should be aware that they CAN deny the request, saying that they do not suspect a disability. But they would have to do that in writing, and then you can appeal to your state board of education in a complaint. Look up your state department of education website and read everything on it about Child Find and the process the school legally must follow. There are federal guidelines, but sometimes state guidelines are slightly different; states can make their process stricter or their timeline shorter, but they must follow federal law and cannot take, for example, longer than the federal timeline for any aspect of the evaluation process (and summer months are included, even though schools might try to tell you differently).

Anyway, your written request, clearly asking for them to evaluate your son, must legally be answered. Your phone calls or in-person conversations are just talking, and they can try to persuade you that you don't need to have testing. But they are required to either run testing or refuse to run testing (and state why), if you request it in writing.

After that, there are other things to expect regarding the process, and I won't go into it right now, but you will need to educate yourself. You can ask any follow up questions that you might have here on the LC boards. 

In addition to reading your state guidelines online, request from your library or order for yourself this book, so that you understand your federal legal rights: https://www.amazon.com/Complete-IEP-Guide-Advocate-Special/dp/1413327427/ref=sr_1_3?dchild=1&keywords=NOLO+special+education&qid=1627845421&sr=8-3

[Storygirl]

When I did this, I photocopied the reports listing my kids' diagnoses and included them with the letter. You could do this to substantiate your claim, but you can also just send the letter with a list of the diagnoses and then bring the documentation to the meeting later.

Standardized test scores that you may have had him take are not sufficient data for them to make a determination about learning disabilities. If they try to screen him out with that again..... maybe some other people have suggestions about how to respond to that. The laws do say that the school may not make a determination based on just one test, and it would be helpful for you to be able to cite that requirement; you would need to research it. I bet it is in the NOLO book and would surely be on your department of education website.

Also, look at legal guidance online on the wrightslaw.com website.

The more that you know about the process and the law, the better. You can't trust the school to have your son's best interests in mind and need to be able to hold them to what they are required to do.

If you get evaluations through the school, you can then take those reports and test scores to a private educational psychologist. It will save you money if they don't have to run all of the tests themselves. The schools will do it for free, but they may not run everything that you ask for.

[LilBearsMama]

Thank you all very much!