Anonymous
Post 01/22/2024 11:14     Subject: How do you cope with having to physically stop or force your large child to do things?
+1

And what are all these doctors saying? Tough luck mom? That’s awful. I thin consulting a special education lawyer is a great idea. This is a horrible situation and a recipe for disaster. He needs wraparound services or residential school.
Anonymous
Post 01/22/2024 10:55     Subject: How do you cope with having to physically stop or force your large child to do things?
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:ABA is not just for autism. One hour a week is not enough.


Op here. Our insurance won’t pay for it because we don’t have an ASD diagnosis, so we pay out of pocket. We need much, much more than an hour a week but we can’t afford it.


Have you considered doctor shopping to get the diagnosis? Then you can get insurance to pay more. Try a developmental ped.


Op here, yes I have doctor shopped. My child is 5 and we already have a developmental ped, neurologist, pediatric psychiatrist, geneticist, and we’ve done a full neuropsych. He just doesn’t have ASD. I almost made the case for it when he was 2/3 but as he’s gotten older it’s clear that this is ID with severe ADHD, not ASD. He’s actually pretty strong on social/emotional communication. My docs know how badly I want the diagnosis but recently our developmental ped told me I should really let it go and that I wouldn’t be able to get that diagnosis.



I think the approach with health insurance shouldn't be to try to get a diagnosis that your DS doesn't have, rather it should be to appeal the decision of the medical insurer. Your insurer is saying we are denying ABA because it is not a valid treatment for people with ADHD, and your response should be to appeal and show what medical evidence there is for the treatment you are seeking for your child. Your position should be - the evidence shows that ABA is effective for severe ADHD, which *is* your DS's diagnosis, and furthermore, the fact that he is ID shouldn't exclude him from ABA because ABA is successfully used with kids with autism and ID. The fact that the health insurance company gates ABA only to autistic children is discriminatory - under the ADA, all companies are required to make reasonable accommodations to their policies for disabled people, and determining how to make accommodations has to be based on an individualized determination, not just a blanket policy only people with diagnosis X get this therapy, which is the opposite of "individualized". I would look for some scientific journal articles, statements of Psychiatric or Psychological associations, etc. to support your position. Also get your provider(s) (psychiatrist, psychologist and/or developmental ped) to write letters of medical necessity explaining how ABA can help with what specific aspects of your DC's diagnosis and "referrals" for ABA. Consult a lawyer if necessary.
Anonymous
Post 01/22/2024 10:53     Subject: How do you cope with having to physically stop or force your large child to do things?
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:ABA is not just for autism. One hour a week is not enough.


Op here. Our insurance won’t pay for it because we don’t have an ASD diagnosis, so we pay out of pocket. We need much, much more than an hour a week but we can’t afford it.


Have you considered doctor shopping to get the diagnosis? Then you can get insurance to pay more. Try a developmental ped.


Op here, yes I have doctor shopped. My child is 5 and we already have a developmental ped, neurologist, pediatric psychiatrist, geneticist, and we’ve done a full neuropsych. He just doesn’t have ASD. I almost made the case for it when he was 2/3 but as he’s gotten older it’s clear that this is ID with severe ADHD, not ASD. He’s actually pretty strong on social/emotional communication. My docs know how badly I want the diagnosis but recently our developmental ped told me I should really let it go and that I wouldn’t be able to get that diagnosis.


Do you have the arc, OP? He should be in a day program through the state. Do you have strong start? I’d push for extended wrap around services in the IEP. It’s going to get better, I hope.
My son was so hard at that age. When they are delayed it’s like they are 3, in a bigger kids body. And it’s so so so so hard and you get so tired.
Anonymous
Post 01/22/2024 10:16     Subject: How do you cope with having to physically stop or force your large child to do things?
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:ABA is not just for autism. One hour a week is not enough.


Op here. Our insurance won’t pay for it because we don’t have an ASD diagnosis, so we pay out of pocket. We need much, much more than an hour a week but we can’t afford it.


Have you considered doctor shopping to get the diagnosis? Then you can get insurance to pay more. Try a developmental ped.


Op here, yes I have doctor shopped. My child is 5 and we already have a developmental ped, neurologist, pediatric psychiatrist, geneticist, and we’ve done a full neuropsych. He just doesn’t have ASD. I almost made the case for it when he was 2/3 but as he’s gotten older it’s clear that this is ID with severe ADHD, not ASD. He’s actually pretty strong on social/emotional communication. My docs know how badly I want the diagnosis but recently our developmental ped told me I should really let it go and that I wouldn’t be able to get that diagnosis.
Anonymous
Post 01/22/2024 04:24     Subject: How do you cope with having to physically stop or force your large child to do things?
Anonymous wrote:
Anonymous wrote:ABA is not just for autism. One hour a week is not enough.


Op here. Our insurance won’t pay for it because we don’t have an ASD diagnosis, so we pay out of pocket. We need much, much more than an hour a week but we can’t afford it.


Have you considered doctor shopping to get the diagnosis? Then you can get insurance to pay more. Try a developmental ped.
Anonymous
Post 01/22/2024 03:15     Subject: How do you cope with having to physically stop or force your large child to do things?
Anonymous wrote:Autistic Logistics by Kate Wilde has a number of helpful suggestions.

One is setting things up for safety. My child is extremely impulsive, which means we cannot have sharp items that are not locked away.

Every kid is different, but it's possible to be safe in every situation, but you do need to be prepared


As a parent of a violent kid who was more than double the size (and age) of your kid before it got under control, I can tell you that it is NOT possible to be safe in every situation. That’s just something professionals tell you to make themselves feel better. I would tell you stories but you’ve got enough on your plate without getting into the horrible things you can’t prevent.

Like a PP, I also worked with violent kids and adults. The safety training was really helpful. I highly recommend it.
Anonymous
Post 01/21/2024 23:14     Subject: How do you cope with having to physically stop or force your large child to do things?
Anonymous wrote:I would ask your professional team about respite services for you. Can he have other caretakers for a weekend? I don’t know what is available where you are. I would also look into a residential placement or hospitalization if Medicaid will fund that. I know Fairfax used to have Foster Care Prevent funds for that kind of thing. I’m so sorry you are struggling with this. There might also be a mobile health crisis unit that can come assist. I’d be very clear with your team about exactly how this looks and is impacting you and his safety. I’m sure you are speaking up, but keep at it.


The child is 5. There is no respite
Anonymous
Post 01/21/2024 21:10     Subject: How do you cope with having to physically stop or force your large child to do things?
Anonymous wrote:Have you been through Nonviolent Crisis Intervention training? I was an ABA para for a school district and frequently had to physically restrain middle school children (I was 120lbs, 5’6”, so they were my size or larger). I think they offer most of the coursework online now, then have you appear in person to learn the physical aspect.


As a parent, I found this unhelpful, because it ended up as "well you didn't follow procedure perfectly". Blaming the parent is an unfortunate but common go to, and once you get this training, you are open to even more criticism.
Anonymous
Post 01/21/2024 21:03     Subject: How do you cope with having to physically stop or force your large child to do things?
Have you been through Nonviolent Crisis Intervention training? I was an ABA para for a school district and frequently had to physically restrain middle school children (I was 120lbs, 5’6”, so they were my size or larger). I think they offer most of the coursework online now, then have you appear in person to learn the physical aspect.
Anonymous
Post 01/21/2024 21:03     Subject: How do you cope with having to physically stop or force your large child to do things?
Anonymous wrote:OP, I'm sorry to hear this.
I could not find the book (I read so many that were useless) but read one by a foster parent who had had multiple aggressive children. One thing I learned from that is that when aggressive that kindness and empathy work well - when my son is out of control saying "I love you so much" (not praising the behavior, just stating a true fact) never triggers and can help.

That's not really your problem, but hopefully a helpful thing I wish it hadn't taken years to figure out. It also helps me handle my own fear.

The other PP who talked about being proactive has great tips. Definitely thinking about how to minimize challenges when things go wrong. Are there alternates to carrying a child? Definitely minimizing stairs is a good start. Getting rid of breakable things or keeping childproof locks on many cabinets is a good idea.

In terms of locking your child in, that may not be allowed, but what is definitely allowed is locking yourself in without your child. If your house is childproofed, you can secure yourself (and other family members) in a safe room and stay safe that way. I hope that makes sense. You could even have a whole suite or even a floor lockable for safety. This is probably a better long term strategy. Also, moving yourself instead of your child will also reduce the risk of injury. You will have to deal with the fact that there may be material destruction, but things are possible to replace. This *doesn't* make it ok, *at all* but it is just ever so slightly less bad.

And lastly, I am sorry you are feeling so alone. My heart goes out to you. I am so sorry there has been such a bad day of late. I have had days that felt unbearable, and I wouldn't wish them on anyone, and I will be thinking about you and hoping things can get better for you.


This is a different kind of violence. Foster kids are a different story.
Anonymous
Post 01/21/2024 21:02     Subject: How do you cope with having to physically stop or force your large child to do things?
Anonymous wrote:
Anonymous wrote:Op here. Is it legal to create a safe room that I can lock DS inside of? We have a safe room that locks from the inside and we sometimes lock ourselves in that room with him. It has a bed and we can lie in it and the room is safe.

But what happens when I go in there with DS is he will scream directly in my ear or throw things at me, so it’s not restful.

Wondering if I could create a room I could lock DS in from the outside, what a camera on the inside. So I could keep him safe but get away from him.

I’m
At the absolute end of my rope today.


I'm the pp who recommended autistic Logistics.

We considered this and ultimately nixed the idea when medication was effective. You'd also have to get him into the room, which doesn't get easier as they get bigger.

I have nothing made of glass in my house. Everything is wood, pottery, plastic. Over the years we have adjusted to the reality of the situation. We have covers on every outlet and on stove knobs so they cannot be turned easily and on door knobs for the same reason.

Are there siblings? If there are siblings you must keep them safe.


Continuing this post - I just want to be honest with you. It only gets harder as they get older and bigger. So anything that relies on you being stronger and bigger isn't a long term solution.

You may have to consult with several psychiatrist/ developmental pediatricians. The quality among them really does vary, and you need to find one who can see the long term implications of the situation.

Another suggestion which really helped in my home was getting a hammock swing. My son needs a LOT of physical input, and the swing really helps with that. It is not exactly the safest thing ever - he climbs it and does all sorts of things no one ever imagined could be done with it - but it's a good way for him to burn energy and do some stimming without destroying the house.

So I would say
1. Medication medication medication
2. Autistic Logistics - she's very practical. The book has some quirks, for example it assumes that fathers never help out with the kids, but it also means the ideas are practical and do not require a team of parents and therapists to execute.
3. A swing or other physical activity in the house.
4. I say, "I love you very much, right now this behavior is not safe for me, please let me know when I can feel safe with you". Focus on the relationship, but also practically on the idea that you deserve to feel safe .
Anonymous
Post 01/21/2024 20:56     Subject: How do you cope with having to physically stop or force your large child to do things?
Anonymous wrote:OP, I'm sorry to hear this.
I could not find the book (I read so many that were useless) but read one by a foster parent who had had multiple aggressive children. One thing I learned from that is that when aggressive that kindness and empathy work well - when my son is out of control saying "I love you so much" (not praising the behavior, just stating a true fact) never triggers and can help.

That's not really your problem, but hopefully a helpful thing I wish it hadn't taken years to figure out. It also helps me handle my own fear.

The other PP who talked about being proactive has great tips. Definitely thinking about how to minimize challenges when things go wrong. Are there alternates to carrying a child? Definitely minimizing stairs is a good start. Getting rid of breakable things or keeping childproof locks on many cabinets is a good idea.

In terms of locking your child in, that may not be allowed, but what is definitely allowed is locking yourself in without your child. If your house is childproofed, you can secure yourself (and other family members) in a safe room and stay safe that way. I hope that makes sense. You could even have a whole suite or even a floor lockable for safety. This is probably a better long term strategy. Also, moving yourself instead of your child will also reduce the risk of injury. You will have to deal with the fact that there may be material destruction, but things are possible to replace. This *doesn't* make it ok, *at all* but it is just ever so slightly less bad.

And lastly, I am sorry you are feeling so alone. My heart goes out to you. I am so sorry there has been such a bad day of late. I have had days that felt unbearable, and I wouldn't wish them on anyone, and I will be thinking about you and hoping things can get better for you.


I don't agree that it would be better to lock yourself in a room while your out-of-control child has the run of your house. There are many dangerous things they could do, putting themselves and the family at risk. You will also be found responsible for that, referred to as neglect.
Anonymous
Post 01/21/2024 20:55     Subject: How do you cope with having to physically stop or force your large child to do things?
Anonymous wrote:Op here. Is it legal to create a safe room that I can lock DS inside of? We have a safe room that locks from the inside and we sometimes lock ourselves in that room with him. It has a bed and we can lie in it and the room is safe.

But what happens when I go in there with DS is he will scream directly in my ear or throw things at me, so it’s not restful.

Wondering if I could create a room I could lock DS in from the outside, what a camera on the inside. So I could keep him safe but get away from him.

I’m
At the absolute end of my rope today.


I'm the pp who recommended autistic Logistics.

We considered this and ultimately nixed the idea when medication was effective. You'd also have to get him into the room, which doesn't get easier as they get bigger.

I have nothing made of glass in my house. Everything is wood, pottery, plastic. Over the years we have adjusted to the reality of the situation. We have covers on every outlet and on stove knobs so they cannot be turned easily and on door knobs for the same reason.

Are there siblings? If there are siblings you must keep them safe.
Anonymous
Post 01/21/2024 20:45     Subject: How do you cope with having to physically stop or force your large child to do things?
From one mom of an extreme behavior kid to another, no therapy worked as well as medication when it came to curbing behaviors that threatened safety. We had to aggressively audit and change our DS' medication until it reached a point where he was not doing things that put himself in danger. With love, I'm saying that it appears his current medications are not doing an adequate job of keeping himself or you safe, and your psychiatrist needs to change something NOW before something really dangerous happens. You may also need a referral to a PHP program. I honestly would seek out a second opinion from a different psychiatrist as well.
Anonymous
Post 01/21/2024 20:27     Subject: How do you cope with having to physically stop or force your large child to do things?
OP, I'm sorry to hear this.
I could not find the book (I read so many that were useless) but read one by a foster parent who had had multiple aggressive children. One thing I learned from that is that when aggressive that kindness and empathy work well - when my son is out of control saying "I love you so much" (not praising the behavior, just stating a true fact) never triggers and can help.

That's not really your problem, but hopefully a helpful thing I wish it hadn't taken years to figure out. It also helps me handle my own fear.

The other PP who talked about being proactive has great tips. Definitely thinking about how to minimize challenges when things go wrong. Are there alternates to carrying a child? Definitely minimizing stairs is a good start. Getting rid of breakable things or keeping childproof locks on many cabinets is a good idea.

In terms of locking your child in, that may not be allowed, but what is definitely allowed is locking yourself in without your child. If your house is childproofed, you can secure yourself (and other family members) in a safe room and stay safe that way. I hope that makes sense. You could even have a whole suite or even a floor lockable for safety. This is probably a better long term strategy. Also, moving yourself instead of your child will also reduce the risk of injury. You will have to deal with the fact that there may be material destruction, but things are possible to replace. This *doesn't* make it ok, *at all* but it is just ever so slightly less bad.

And lastly, I am sorry you are feeling so alone. My heart goes out to you. I am so sorry there has been such a bad day of late. I have had days that felt unbearable, and I wouldn't wish them on anyone, and I will be thinking about you and hoping things can get better for you.