Please pray for my sons and a vent

[Teaching3bears]

DS15 (severe special needs) is waking up in the middle of the night and not getting enough sleep.  As a result he is having bad moods and medical issues.  He seems to wake when we turn on water at all in the house.  DS17 (severe special needs) hardly slept last night and spent all day in bed until 5 pm.  I am so worried about them.  DS12 is away on a trip.  We got total strangers to drive him.  😟

Whenever they are asleep I am worried I will wake them so I try not to move.  When they are awake I am worried something bad will happen to them.  Unfortunately my worries have not been unfounded.  I am afraid to leave the house, use water, speak, put dishes away.

We used to go out and do all kinds of things on weekends.  Now we sit around and wait for one person or another's medical problem to be over.  I feel like I'm in prison, like we all are.  I miss living, traveling, talking to other people, going places, doing chores first thing in the morning, feeling free to leave the house.  DH is always in a bad mood now and I can't remember the last time he smiled at me or said a kind word.

I have a very long to-do list.  It's frustrating that I can't get much done because I can't make phone calls or move around the house.  I am eating so much chocolate.  

It has been hard to find help because my children are older and have severe problems and a bit because of where we live.  Right now, I would not leave my sons with anyone anyways and having another person in the house would make more noise.  

I wish my sons had much better lives.  I wish they had health.

 

 

 

 

[happi duck]

Many (hugs)

[Kidlit]

I’m very sorry

[Teaching3bears]

We tried melatonin and it worked but caused severe medical problems for DS15 and we ended up in hospital.  I am not sure what happened.  I would consider it again but i'm not sure what's going on.  He has had reflux and maybe it is waking him. 

[Selkie]

I'm so sorry. Have you tried a white noise machine or a fan?

[Teaching3bears]

Sometimes I use a noise machine.

[mumto2]

I do pray for your family and your sons. I wish I could do more. Sending hugs.........

[Teaching3bears]

I had not heard of phosphatidylserine for sleep.  Thanks.  We don't have a care team.  It's a nice idea.  I am having trouble these days making any appointments and phone calls. 

[Tap]

What do the doctors say about his sleep issues? At his age and severity of issues,  I assume you have tried more than melatonin at this point. Medications to help with sleep are one of the first things that doctors usually try in kids with special needs that are exacerbated by sleep issues. 

[Pen]

3 minutes ago, Teaching3bears said:

I had not heard of phosphatidylserine for sleep.  Thanks.  We don't have a care team.  It's a nice idea.  I am having trouble these days making any appointments and phone calls. 

 

You all really need a care team.  I am praying for you to find a care team.  

[Tap]

6 minutes ago, Teaching3bears said:

I had not heard of phosphatidylserine for sleep.  Thanks.  We don't have a care team.  It's a nice idea.  I am having trouble these days making any appointments and phone calls. 

Is there a reason you can't call when he is awake (maybe something I am missing)?? Does he have a PCP, Psychiatrist or neurologist? Many other specialists will write for them as well especially since so many medical issues are comorbid with sleep issues.. Any of them are very qualified to help manage sleep issues.

Edited April 14, 2019 by Tap

[Pen]

Do they have diagnoses?

[Teaching3bears]

DS15 just started the sleep problems after coming from the hospital.  I thought it might be from medication but they say no.  He saw a neurologist in hospital but we won't see him again for a while.  The pediatrician is separate but they do share some info.  Maybe that is a care team.  I can really only get in touch with anyone after DH comes home from work and that is too late.  Last time I spoke on the phone DS17 managed to eat a whole jar of peanut butter (long story) which caused gastro problems and more sleep prob .... really I think the sleep is caused by gastro.  I'm so tired.

[Tap]

2 minutes ago, Teaching3bears said:

DS15 just started the sleep problems after coming from the hospital.  I thought it might be from medication but they say no.  He saw a neurologist in hospital but we won't see him again for a while.  The pediatrician is separate but they do share some info.  Maybe that is a care team.  I can really only get in touch with anyone after DH comes home from work and that is too late.  Last time I spoke on the phone DS17 managed to eat a whole jar of peanut butter (long story) which caused gastro problems and more sleep prob .... really I think the sleep is caused by gastro.  I'm so tired.

I prefer to email my doctors through the hospital or office portal. Maybe you can see if that is an option.  I like to email late at night, when I can stop and think for a few minutes before hitting the send button. 

[Tap]

16 minutes ago, Teaching3bears said:

DS15 just started the sleep problems after coming from the hospital.  I thought it might be from medication but they say no.  He saw a neurologist in hospital but we won't see him again for a while.  The pediatrician is separate but they do share some info.  Maybe that is a care team.  I can really only get in touch with anyone after DH comes home from work and that is too late.  Last time I spoke on the phone DS17 managed to eat a whole jar of peanut butter (long story) which caused gastro problems and more sleep prob .... really I think the sleep is caused by gastro.  I'm so tired.

Is he still on the medicine? If yes, call the pharmacy and ask the if it can cause sleep issues. Lots of medicines can affect sleep or cause anxiety/restlessness. 

[Tina]

I'm so sorry.  Praying for all of you.  Looks like some have made some good suggestions.  Hopefully something will help.  

[MrsRobinson]

I'm so sorry you're dealing with so much. 😞 

Is there a residential treatment option for them at some point? I know you don't want someone else taking care of your sons but I'm worried for you (and your dh) that you're burning out. (Said by a full time care giver that circles the drain every now and then. 🙄)

[beaners]

Have you talked to anyone about your own needs? It's always easier for me to look for solutions for my kids when my own head is above water. Medical problems in kids can cause a lot of anxiety for their parents, and this sounds very stressful in general. 

One thing we do when I have to make medical calls is send my kids to a spot where they have to stay for a few moments with something that will keep them occupied. We do it all the time when I can't be directly supervising so it's part of our routine.

Is there one main need that might be a route for you to get coordinated care? Anywhere in your region that could offer you some resources? For example our CP clinic writes most of our referrals, and our state has a rehab services department with caseworkers who help families get medical care and therapy and equipment for different special needs. 

[prairiewindmomma]

Generally, a care team consists of a variety of specialists across various disciplines. They may or may not meet collectively, but they are often at a specialty clinic or hospital. 

As an example, the local autism clinic has OT, PT, SL-P (speech), SL-P (feeding), audiology, behaviorists, developmental pediatricians, Ped psych, etc.

Gently, the issues you describe are WAY beyond even what one very good, well qualified pediatrician can advise on.

Brains need to sleep. Everybody’s brain and body needs a break. Do you have a good autism friendly psych who can help get sleep meds set up and who can help you trouble shoot other scenarios?

 

[sbgrace]

I'm sorry, and I'm praying for you and your sons and family.

My son doesn't have near the complexity/severity in his special needs, but we went through over a year of severe sleep problems with him. It was kicked off by a medication his pediatrician prescribed. I was told that it couldn't be causing the sleep problem--I think we used it for about a month until a sleep medicine specialist told me that was the culprit. It turns out it had a black box warning for sleep issues! Sometimes doctors mes up. But removing the medicine, in our case, didn't reverse the pattern that had been set. So we were left with the mess. 

The lack of sleep was so hard on him--made all of his special needs issues so much worse, and created new ones even. It was also incredibly hard on me. I very much feel for you and your boys. 

We did work with sleep medicine and then psychiatry to find sleep med combo that would help him. He still takes them. He needed more than melatonin, though he takes that too. I do think you need specialists--psychiatry, pediatric sleep medicine perhaps, gastro if you don't have that, on board. 

My son has a white noise machine in his room next to his bed and also one just outside his door. I have another down the hall where it empties to the living area.  If this might be tolerated by your kids, I wonder if lots of white noise might help you be able to live while they sleep.  This one is one of ones we use, and it has a lot of different options in terms of sounds, tone, volume, etc.  https://www.amazon.com/Adaptive-Sound-Technologies-LectroFan-Non-Looping/dp/B00E6D6LQY?th=1

I feel concerned for you. When my son was very sick, before he was diagnosed with his metabolic issues, I was just so consumed by his care, needs, and issues. At some point, my own health totally crashed. It took a long time to recover.

The care of you is vital too.

I wish I knew of a way you could get help. I can pray for you, and will. 

[Pen]

56 minutes ago, Teaching3bears said:

DS15 just started the sleep problems after coming from the hospital.  I thought it might be from medication but they say no.  He saw a neurologist in hospital but we won't see him again for a while.  The pediatrician is separate but they do share some info.  Maybe that is a care team.  I can really only get in touch with anyone after DH comes home from work and that is too late.  Last time I spoke on the phone DS17 managed to eat a whole jar of peanut butter (long story) which caused gastro problems and more sleep prob .... really I think the sleep is caused by gastro.  I'm so tired.

 

Our hospital has pediatric triage nurses Who can take phone calls at any hour day or night (message system and then they call back).  Yours may not have that, but they almost certainly have something.  If they don’t call a teaching hospital in the nearest city to you with a teaching hospital, or a teaching hospital anywhere that deals with what your boys have.  Keep a notebook and ask each person you talk to for assistance finding decent help.  

Doctors have some system of someone on call and available at all times—not instantly, but not having to wait for “awhile” if that means weeks away.  

You need to reach out for more hands on real help.  You are in danger of total burn out and if that happens your boys will have to have someone else care for them, like it or not.  

You probably need one or more of them to go into a residential respite care so that you and your dh can  ...  survive.  

 

Right now it is likevyou are in a hole, like a deep well with water, in which you are barely able to keep treading and keep your head up to breathe, and all you can see around you is the hole.  You need to be able to get up out of the hole, up from constant treading water, to where you can see a broader view and make some decisions, acquire some flotation devices, before the family drowns.  

 

Contact hospital, neurologist or whoever answers for him, and pediatrician, with regard to the sleep issues.  Consider it a life and death emergency for you and your dh to get this solved in addition to it being important for your children.  

Contact social services and see whether they have help to offer if your boys are considered disabled.  

Try online forums for the illnesses your boys have to see what suggestions people can give.  

Chocolate is good, but will only go so far!

[Pen]

 

Quote

DH is always in a bad mood now and I can't remember the last time he smiled at me or said a kind word.

 

Why? Because of his own lack of sleep and stress? Or because you are too busy being mom and nurse ? Or_____?  Does he have different views of what should be being done and if so what?

ETA: what about reverse? Have you been able to smile at him or say a kind word?

Edited April 14, 2019 by Pen

[Anne]

(((Teaching3bears))). You have gotten some wise suggestions from posters up thread.  I have no advice but am praying for you and your family.

 

Anne

[Pen]

Other places that might be able to offer help: public school system if you are in USA. (government schools in some other countries)

If your children had a home bound education provider — for the minimum time that might be provided at home, , this might give some time when someone else could be there to supervise peanut butter etc so that you could make daytime calls.  

504/ IEP (or similar if out of USA), if they had that: An IEP in some places gives respite care for some conditions.  (An article I linked on Autism rise in NJ thread even indicated that some children may be being diagnosed with autism deliberately even if the evaluators don’t think they have that so that the parents can get respite care and other services available for autism). 

[Pen]

Local churches and fraternal organizations, possibly.  

[Pen]

Also, please keep open to help that may be available or coming your way.  

There are a lot of people praying for you and your family.  

I am sure you want the prayers to be answered by wellness, health, normal life for your boys and you. But that probably won’t happen.

What is much more likely is that if you use the lift and inward psychological support of the prayers to reach out for help, to make calls and so on, you will get little bits of help that individually won’t seem like a lot, but can add up.  For example: doctors to try different sleeping medications for your boys (the first try may not be right, but something almost certainly will be an improvement over current situation).  someone who can come in and install locks on cupboards and refrigerator— perhaps on the whole kitchen.  Someone to give you some home help during day so you can make calls.  Respite care. Etc.  

Btw: we have had some severe illness in my family and sometimes when someone is in hospital they need to be released to a step down care facility rather than straight to home. That can give a chance for things like wheel chair ramp or special bed to be installed in the home.  And for home level medications to be figured out ( for example sleeping medications that will work).  Or for physical or occupational therapy to be given to point that the patient is safe for release home.

[displace]

I’d research respite care.  Many counties have emergency care aids so you can get a few hours break.  Are you able to outsource any work (grocery deliveries, cleaning, etc?).  Caring for three people who have a lot of needs is probably enough work for three people.  Your health insurance may have aids that can help.  Schools are required to provide full day schooling and it may not be the best option academic wise, but may be necessary for the whole family’s survival.  Schools may have isolated classrooms or programs dedicated to special needs.  Sometimes decisions made when kids are younger, when we can do it ourselves, is not sustainable when they are older and bigger.  Lots of states have programs until kids are 21.  

Idk how much research of all the options you’ve done, but that would be high priority so you can get support. 

Something else I’d highly suggest is make your home appropriate for everyone.  If the kitchen or pantry needs to be locked, do that.  If bedrooms need to be made safe to prevent injury, do that.  Anything that can help you to not be on your toes all the time is necessary.  If sleep is an issue, maybe white noise machines or ear plugs or medicines.  Living your life quietly for an hour or two daily is one thing.  Not being able to function is not an option.

 

Edited April 14, 2019 by displace

[Pen]

Btw, on subject of prayers, there is a call-in ministry for people with major health problems available, if that would be of help as you are homebound because of your boys.  

Let me know if you are and I can email you the number.  

The person running it would appreciate donation support, but it is free other than any long distance phone charges you might have.

(ETA- maybe there are many, but I only know of the one.  It is Christian.   I just recalled that it has a website. If I can find a link, I will post that.) 

Edited April 14, 2019 by Pen

[Teaching3bears]

Thanks everyone. I can't answer everything you asked and I have already done most of the things you suggested. When the kids were younger I had bit more help and I spent days on the phone asking about services etc. Honestly, none of it was very helpful. my sons are doing much worse.

From what they told me my sons would have way more services offered to them if their problems were less severe. They told me a) my sons need a 1:1. They do not have enough money to provide everyone with a 1:1. B) they don't have much hope for my sons because their problems are so severe that they don't think they will ever be independent anyways so it won't be money well invested. They don't have spaces for everyone in programs so they choose kids who are most promising. They told me to stay strong. Years ago I spoke to a mom with a severe child who was spending three hours a day body building so she would be stronger than her son when he grew.

We have had my sons in a variety of recreation programs in the past. They are in a limited respite program right now but they could not go yesterday because they were not well enough. Over the years we have spent tons of money (literally enough to buy an additional home) on behavioral and other therapies. The therapists believed my sons had medical problems/pain that was interfering with therapy. They would call me to come pick them up early because their mood was bad/their behavior was bad/they were not into it or they looked sick. At the place that called the most there were 2 male and 2 female young, fit therapists. I think the therapy programs would have helped them if they had more of a learning difficulty and less sensory problems. They made no improvements.

The problem is that the doctor specialists where we live have waiting lists close to a year and they don't have much time to spend when you do see them. We spent a week in the hospital last month because DS was admitted through ER. We only saw neurologists three times during that time for ten minutes each and it was a different one each time. We saw a pediatric team three times too but it was not helpful. Now there is a nurse I can call but she is only there until three and she only returns messages within 72 hours. The hospital is well-respected and well-funded.

I can hire someone myself to do respite and be reimbursed up to a certain amount. We had a respite worker a few years ago. She needed quite a bit of support from me but I really liked her as a person but she got a full-time job. I have not found anyone else since then. I have been responding to several ads each week and it has taken up a lot of time. I have found there are two kinds of people looking for this kind of work. The first are young and enthusiastic to work with special needs but would rather work with small children. Also, they don't have cars and it takes a long time to get to our house without a car so when they figure that out they tell me they cannot do it. The other are people who are very much in need of money. They are usually older, have disabilities or health problems themselves that would not allow them to chase a hyper teen. They take a program at the community college because there is such a demand for this work. Maybe I sound picky or difficult. I am in touch with someone right now who seems enthusiastic and lives in my neighbourhood so it might work out. She seems just a couple of years out of high school and has only worked with preschoolers so not ideal because my oldest is almost eighteen but I will give her a chance.

Homeschooling has been the best thing for my kids. By that, I don't mean staying at home but being able to be exposed to challenging and exciting content. They love to learn and are very intelligent. Mostly I posted for prayers and to vent. It does help. I appreciate you all.

[Pen]

https://www.reconciledthroughchrist.org/teachings

 

[Teaching3bears]

Also, the medical problems have been more acute lately. I cannot do anything except sit quiet and watch them suffer and wait and that is torture.

[Pen]

I don’t know what your sons have-medical and or other conditions.  

But I am confused by things you wrote above.  It sounds in some moments like they are nonverbal, unable to communicate about pain or what might be bothering them, unable to grasp a concept like don’t eat the whole jar of peanut butter— sort of a severe autism  (and the type that usually involves low IQ also) or autism-like syndrome picture comes to my mind from your words, even if that’s not quite right.  

At other times it sounds like they are highly intelligent, doing well in school, capable of communicating, but  have severe other problems, perhaps something like severe cerebral palsy / muscular dystrophy or maybe something like a brain tumor or TBI picture (only one specialist, a neurologist, seems to be involved) emerges.  

 

 

[Pen]

1 minute ago, Teaching3bears said:

Also, the medical problems have been more acute lately. I cannot do anything except sit quiet and watch them suffer and wait and that is torture.

 

They may need to be in a nursing care inpatient type facility at least long enough for you to get your home better set up.  Kitchen lock downs...maybe bedroom lock downs, etc.  

[Pen]

29 minutes ago, Teaching3bears said:

Thanks everyone. I can't answer everything you asked and I have already done most of the things you suggested. When the kids were younger I had bit more help and I spent days on the phone asking about services etc. Honestly, none of it was very helpful. my sons are doing much worse.

From what they told me my sons would have way more services offered to them if their problems were less severe. They told me a) my sons need a 1:1. They do not have enough money to provide everyone with a 1:1. B) they don't have much hope for my sons because their problems are so severe that they don't think they will ever be independent anyways so it won't be money well invested. They don't have spaces for everyone in programs so they choose kids who are most promising. They told me to stay strong. Years ago I spoke to a mom with a severe child who was spending three hours a day body building so she would be stronger than her son when he grew.

We have had my sons in a variety of recreation programs in the past. They are in a limited respite program right now but they could not go yesterday because they were not well enough. Over the years we have spent tons of money (literally enough to buy an additional home) on behavioral and other therapies. The therapists believed my sons had medical problems/pain that was interfering with therapy. They would call me to come pick them up early because their mood was bad/their behavior was bad/they were not into it or they looked sick. At the place that called the most there were 2 male and 2 female young, fit therapists. I think the therapy programs would have helped them if they had more of a learning difficulty and less sensory problems. They made no improvements.

The problem is that the doctor specialists where we live have waiting lists close to a year and they don't have much time to spend when you do see them. We spent a week in the hospital last month because DS was admitted through ER. We only saw neurologists three times during that time for ten minutes each and it was a different one each time. We saw a pediatric team three times too but it was not helpful. Now there is a nurse I can call but she is only there until three and she only returns messages within 72 hours. The hospital is well-respected and well-funded.

I can hire someone myself to do respite and be reimbursed up to a certain amount. We had a respite worker a few years ago. She needed quite a bit of support from me but I really liked her as a person but she got a full-time job. I have not found anyone else since then. I have been responding to several ads each week and it has taken up a lot of time. I have found there are two kinds of people looking for this kind of work. The first are young and enthusiastic to work with special needs but would rather work with small children. Also, they don't have cars and it takes a long time to get to our house without a car so when they figure that out they tell me they cannot do it. The other are people who are very much in need of money. They are usually older, have disabilities or health problems themselves that would not allow them to chase a hyper teen. They take a program at the community college because there is such a demand for this work. Maybe I sound picky or difficult. I am in touch with someone right now who seems enthusiastic and lives in my neighbourhood so it might work out. She seems just a couple of years out of high school and has only worked with preschoolers so not ideal because my oldest is almost eighteen but I will give her a chance.

Homeschooling has been the best thing for my kids. By that, I don't mean staying at home but being able to be exposed to challenging and exciting content. They love to learn and are very intelligent. Mostly I posted for prayers and to vent. It does help. I appreciate you all.


 

 

Are all 3 of them severely ill?

[Pen]

2 minutes ago, Pen said:

Now there is a nurse I can call but she is only there until three and she only returns messages within 72 hours. The hospital is well-respected and well-funded.

 

 

Have you called?

Have you left a message?  

How about leaving 10 messages.  

Make desperation clear.  

Have you explained the severe sleep problem and that it needs a solution?

If not, call back and do so.  While at it explain that you cannot talk on phone without waking your boys and find out if there is another option such as text or email.  

If the only way to get help in your area is to go to emergency room, maybe that’s what you need to do.  

To take your boys, or

Perhaps even while your husband is at home, you need to go into the emergency room yourself, as a patient, if that’s the only way you can speak to a doctor in your area.  Probably that’s not actually the case, but maybe it is.  

“Well respected “ may not mean much.  

Does it have a sleep lab?

..... 

 I get that you basically just want prayers and to vent.  You were clear about that.

okay    never mind 

I’ve prayed.  

Hugs. 

 

[Pen]

PS if you have a cellphone maybe you can talk while still supervising.  If you have a radio that you can setvto static or a white noise machine maybe you can use that to help block the sound of talking on phone.  

[Pen]

1 hour ago, Teaching3bears said:

Also, the medical problems have been more acute lately. I cannot do anything except sit quiet and watch them suffer and wait and that is torture.

 

Is this like cystic fibrosis and they are reaching dying stage?

 

Are they in pain?  Do they need pain medication as well as sleeping medications?

 

sounds like you are in an emotional double bind...  afraid to get help or even to make a phone call to ask for adequate medication ... lest you will wake them up during day, because they have to sleep in day because you won’t make calls to get adequate medication so they (and you and your dh) can sleep at night.  

I wonder if lack of sleep means you aren’t able to think rationally.

Edited April 14, 2019 by Pen

[beaners]

I am praying. 

I would love to be able to offer suggestions specific to your needs, but I'm also not sure what they are. I have experience with a wide range of conditions, so if it is something I am familiar with I would love to find a way to make life better for all of you. 

[maize]

Hugs and prayers, of course you are exhausted and that makes it so very hard to think and to keep trying.

[Teaching3bears]

Thanks.  I am not exhausted but I am tired.  My body in my late-forties is somehow able to deal with things better than in the past.  A big problem is not being able to do chores first thing in the morning when I have most of my energy.  I am 100% sure that I have not lost my mind and that I can think rationally.  

They do not have cystic fibrosis or CP.  They both stopped speaking in early childhood after speaking very early and having large vocabularies.  Their sensory problems are off the charts.  Now there are a few medical problems.  I don't want to talk about them all right now or go into details.  I am wondering though about our air filter.  We had a high quality one and the last furnace guy did not have a replacement and put in a low quality one and we were going to replace it but have not had a chance.  All the places that sell it were not open yesterday.  I have to remember to call them tomorrow.  I am having allergy symptoms first time in years and DS is sniffling a lot and it is not a cold.  Really it is affecting my sleep a bit so probably his too.

Tomorrow DH will come home early and I will call about filter, go to bank for important tax thing and call nurse.  I will have an hour.  I do find this hard.

DS did not eat all the peanut butter because he did not know it was the wrong thing to do.  He certainly did.  He has very low impulse control.  And certainly, I'm sure there are people who don't have any kind of special needs who have eaten a jar of peanut butter in one sitting.  LOL.  It was not the weirdest thing he's ever done.  I have not had their IQs tested.  I'm sure they would measure very low or fail to complete it in any way but really they are the most intelligent people I have ever met.  

They are very out of touch with their bodies.  For example, when DS17 was a baby he would point to his major body parts and label them proudly.  This included "mowf".  This skill went when he stopped talking.  Now he cannot point to his mouth or any other body part or blow a candle.  This is apraxia.

DH puts locks on the fridge etc. every night.  We have a white noise/fan machine but it is not always a good idea to use it for various reasons. 

 

 

 

[mumto2]

Sending more hugs and prayers.  I hope your hour tomorrow is productive but even more I hope it is a bit of a much needed break.  I am also hoping the neighborhood person works out.

[Teaching3bears]

6 minutes ago, Thatboyofmine said:

Big hugs and prayers, teaching3.  You’re an awesome mama.  Those boys are lucky and blessed to have you and though they may never be able to express it, I bet they feel it everyday.  💛💛💛  

Thanks.  Sometimes they do express it.  Sometimes I get the nicest hugs!

[Pen]

13 minutes ago, Teaching3bears said:

Thanks.  I am not exhausted but I am tired.  My body in my late-forties is somehow able to deal with things better than in the past.  A big problem is not being able to do chores first thing in the morning when I have most of my energy.  I am 100% sure that I have not lost my mind and that I can think rationally.  

They do not have cystic fibrosis or CP.  They both stopped speaking in early childhood after speaking very early and having large vocabularies.  Their sensory problems are off the charts.  Now there are a few medical problems.  I don't want to talk about them all right now or go into details.  I am wondering though about our air filter.  We had a high quality one and the last furnace guy did not have a replacement and put in a low quality one and we were going to replace it but have not had a chance.  All the places that sell it were not open yesterday.  I have to remember to call them tomorrow.  I am having allergy symptoms first time in years and DS is sniffling a lot and it is not a cold.  Really it is affecting my sleep a bit so probably his too.

Tomorrow DH will come home early and I will call about filter, go to bank for important tax thing and call nurse.  I will have an hour.  I do find this hard.

DS did not eat all the peanut butter because he did not know it was the wrong thing to do.  He certainly did.  He has very low impulse control.  And certainly, I'm sure there are people who don't have any kind of special needs who have eaten a jar of peanut butter in one sitting.  LOL.  It was not the weirdest thing he's ever done.  I have not had their IQs tested.  I'm sure they would measure very low or fail to complete it in any way but really they are the most intelligent people I have ever met.  

They are very out of touch with their bodies.  For example, when DS17 was a baby he would point to his major body parts and label them proudly.  This included "mowf".  This skill went when he stopped talking.  Now he cannot point to his mouth or any other body part or blow a candle.  This is apraxia.

DH puts locks on the fridge etc. every night.  We have a white noise/fan machine but it is not always a good idea to use it for various reasons. 

 

 

 

 

I understand that you don’t want to talk about their specifics much— but it might help with people giving realistic suggestions.  

It sounds like...something ... happened to two, but not the third?

when I was seeing a doctor for environmental illness, there were some children with similar stories.  Very normal...and then something...happened.  

I hope your hour will go great!

[Pen]

 

24 minutes ago, Teaching3bears said:

DS did not eat all the peanut butter because he did not know it was the wrong thing to do.  He certainly did.  He has very low impulse control.  And certainly, I'm sure there are people who don't have any kind of special needs who have eaten a jar of peanut butter in one sitting.

 

Actually, tbh, many teen boys I know can and will do something like eat a whole jar of peanut butter ... and be totally fine. Possibly 2 jars, a loaf of bread, a quart of milk...

The children I know who eat a whole ____ even though it will make them sick have tended to have ASD or an ASD-like condition.  Generally along with a physical intolerance.  So, say, celiac such that they should not eat gluten, but ASD-like condition, so they eat a whole gluten based loaf of bread, or pizza, or whatever.  

 

I wonder if there’s some form of video monitor that could give you eyes on, while still being able to do other things.  Or additions of daytime lockdowns possible for long enough that you can do something else...like call a nurse without dh getting home early.  

[Pen]

Could you put in call (or a few) to nurse message system today, specifying time she can reach you tomorrow, with explanation that time window for call back is critical  because you cannot take a phone call except when you have someone else there to watch the dc?    Perhaps with as much detail as possible so that the call tomorrow can be as useful as possible.  Otherwise I think you May only be able to leave a message for a call back you won’t be able to pick up. 

We have not only high level furnace filters, but also separate air filters from NEEDS .  It does make a difference. We have ones where replacement filters can come by UPS, via Amazon, NEEDS, or the company own website orders possible 24/7 unless sites are down, and I can put them in myself.  Notwithstanding Konmari, I buy new replacements to have in waiting before I use last prior bought one for furnace.  

I hope that fixing that will help.  

I hope you don’t have something like black mold that is beyond what air filters can take care of.  

Anyway, hang in there, prayers.

I need to go deal with my own difficulties and own family needs now.  🌺🥓🍳

[itsheresomewhere]

Gently, I think you are underestimating how much this is affecting you.  We often don’t realize how much things are affecting us until we get help. Tomorrow call the pediatrician and get an appt or help with their sleep. The medicines now are really good and there is probably one or a combo that could help.  Then when was the last time you had an check up or blood work?  If not recently, schedule one.  We have to take care of ourselves. 

[Pen]

What ended up happening from the calls to nurse, doctors’ offices, and the other actions you were taking?

 

[Teaching3bears]

We have a doctor's appointment this week. I don't know that it will help. The medication that has a side effect of sleepiness is making my son hyper and he is not sleeping enough and so he is in a bad mood. it's been a tough week homeschooling because he literally could not stop jumping and running. The lack of sleep is affecting his health.

I found a respite worker who will probably come to my house before she is offered a new job. She is 20 and within 2 minutes of coming into my house she told me that she had ADHD, anxiety, depression , a few other things, and that she cannot remember or understand what people say to her because of a language processing problem and that her father abused her most of her life. She announced that she had only once received a mark higher than a D in school and DS12 went on about that after she left. She is on a bunch of medication but cannot remember to take them.
She honestly seems like the best I have found lately. She was sweet and encouraging and sunshiny with the children. My concern is that DS's health has been so unpredictable that I would not leave her or anyone alone with him. if I stay in the house I am worried that I might end up in a quasi-caretaking role with her and I recognize that I am already doing my share of that with my kids.

[Pen]

Do you have any home healthcare services companies in your area?  Where you’d be dealing with company who would send out workers?

I hope the doctor will find something to achieve sleep.  

[Teaching3bears]

We do but they deal mostly with elderly, and have no experience with nonverbal kids with behavior problems.

I am hoping for better health and better sleep too.