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amother




OP
 

Post  Sun, Mar 29 2020, 3:32 pm
Can we commiserate together?
I literally don’t know how I will get through the next couple of weeks. Severely not managing with my child.
❤️ Severely autistic 10 year old plus more reg kids Smile
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acemom




 
 
 
 

Post  Sun, Mar 29 2020, 3:36 pm
Hugs!

It's so hard even with"regular" kids!

No advice but sympathy galore Hug Hug
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amother




Brown
 

Post  Sun, Mar 29 2020, 3:45 pm
Our county-level case coordinator called last week to offer to get my 2yo on the wait list for zoom therapies even though neither of us have much confidence in that working. BH he hasn’t regressed too much over the past couple of weeks in most areas. OT and PT are probably going to end up being bigger needs but he’s been happy overall so that’s the best I could hope for right now and I’m grateful for that. My other kids need me too and are struggling with the situation, so it’s a balancing act as always.
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amother




Silver
 

Post  Sun, Mar 29 2020, 4:12 pm
My daughter is 7 and has down syndrome. She was in online classes anyway so that hasn't changed. The only problem is finding time to work with her between all the other kids and pesach cleaning.

What really plagues me though is if one on our kids ch"v gets sick they could be denied care based on their disability. That kills me.
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amother




Brown
 

Post  Sun, Mar 29 2020, 4:13 pm
amother [ Silver ] wrote:
My daughter is 7 and has down syndrome. She was in online classes anyway so that hasn't changed. The only problem is finding time to work with her between all the other kids and pesach cleaning.

What really plagues me though is if one on our kids ch"v gets sick they could be denied care based on their disability. That kills me.


What??! Did I miss something??
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amother




Slategray
 

Post  Sun, Mar 29 2020, 4:17 pm
My aide quit and I just cant manage the therapies online. So, we are holding our head above water just barely.
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amother




Tan
 

Post  Sun, Mar 29 2020, 6:20 pm
My DC has severe CP: can't walk, speak, use hands well. I need to provide full physical care (feeding, dressing, changing, bathing...) plus everything that the OT, PT, and ST would do (we were entitled to MANY therapy hours each week). Also, entertainment, stimulation, and EDUCATION since DC can't really do anything alone. No way are we maintaining my child's hard-won gains, and for this I'm extremely guilty. But I'm also a human with limited ability! I've had wonderful volunteers offer to come but DC is too medically fragile to consider taking the risk. BH I have other kids who also need attention, but also help a lot with my SN child. And it helps that DH is mostly around now to help with lifting and some of the care.

And I know that any difficulty I'm having doesn't compare to the moms of autistc/ behavioral kids. We used to provide some respite care for some of these kids so I know what it means to have to keep your eyes and hand on a child full-time to keep everyone safe. May Hashem give everyone the koach we need to get through this!
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amother




Silver
 

Post  Sun, Mar 29 2020, 6:36 pm
amother [ Brown ] wrote:
What??! Did I miss something??


I don't want to spread panic. Just that if there's a shortage of hospital beds they could deny care to our kids ch"v.
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ROFL




 
 
 
 

Post  Sun, Mar 29 2020, 6:37 pm
Ohel has great zoom video fro kids with disability. Go in facebook or their website to find them.
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amother




OP
 

Post  Sun, Mar 29 2020, 6:46 pm
ROFL wrote:
Ohel has great zoom video fro kids with disability. Go in facebook or their website to find them.


If my child could watch a video I would be happy. She can’t focus for a second on a screen.
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amother




Brown
 

Post  Sun, Mar 29 2020, 7:28 pm
That's terrifying. Just when you think you can't possibly need to fight more battles against the medical world to get your sn child what he needs... I've been keeping him and the rest of my kids away from everybody and we don't live in a highly-impacted area (although numbers are growing), so hopefully we'll be okay. Taking every possible precaution. Davening a lot for everybody.
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amother




Brown
 

Post  Sun, Mar 29 2020, 7:30 pm
amother [ OP ] wrote:
If my child could watch a video I would be happy. She can’t focus for a second on a screen.


Same. His siblings were all easily entertained by videos from very early on, like 18 months old for sure. I try not to overdo it, but in a pinch (and there are tons of pinches nowadays let's be honest), I resort to videos. He doesn't get it at all. He likes the lights and colors, it seems, but doesn't focus on it for more than a few seconds at a time.
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cuties' mom




 
 
 
 

Post  Sun, Mar 29 2020, 7:57 pm
I have one kid with autism and one without. My autistic kid is constantly dumping everything. He loves pulling all the sefarim out of the bookcase and throwing them on the floor. Yesterday, he poured confectioners sugar all over the kitchen. As soon as it was cleaned, he dumped out a bag of flour. He also hasn't slept much the last 3 nights. He enjoys his online school and watching music videos, but he's not getting enough exercise, so he's not tired at night.
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imorethanamother




 
 
 
 

Post  Sun, Mar 29 2020, 8:10 pm
YES! I'm not handling this at all well. With nothing to do all day, and no one to watch him full time (I've had to deal with my husband being ill, no cleaning help, and all the other kids and their needs and cooking and cleaning and other zoom school), he's regressed to trying to destroy everything. He backs up toilets and turns on the hose and makes mud puddles and leaves open freezers and loses the key to the house and runs around naked....

One or two therapists have tried to zoom with him but it's a disaster. He makes funny faces at himself and makes crazy sounds. His stimming is out of control. He makes crazy sounds all day, testing my patience.

I'm ashamed to admit that I've been yelling at him so much. I'll find him dismantling a washing machine and I'll lose it. It seems like he's become this huge destructive force all day.

And for what it's worth - things have slowed and we are nowhere near this kind of doomsday scenario where we have to allocate resources to only the strongest. I wouldn't worry.
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imorethanamother




 
 
 
 

Post  Sun, Mar 29 2020, 8:12 pm
ROFL wrote:
Ohel has great zoom video fro kids with disability. Go in facebook or their website to find them.


Link? I can't find it. It's a last resort, really. I'll try to put him with a video or an education game and five minutes later he's doing something crazy with my computer.
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nanny24/7




 
 
 
 

Post  Sun, Mar 29 2020, 9:08 pm
imorethanamother wrote:
Link? I can't find it. It's a last resort, really. I'll try to put him with a video or an education game and five minutes later he's doing something crazy with my computer.

I am trying to post an image with Ohel information.
Hugs to all of you heroes!
Hopefully this works.
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amother




Silver
 

Post  Sun, Mar 29 2020, 9:13 pm
Quote:
And for what it's worth - things have slowed and we are nowhere near this kind of doomsday scenario where we have to allocate resources to only the strongest. I wouldn't worry.


Yeah, I know I"m panicking for nothing. And my daughter is not high risk B"H, she doesn't have a heart defect or any physical disabilities. I just imagine her being turned down because she has Down syndrome and my blood starts to boil.
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amother




Bisque
 

Post  Sun, Mar 29 2020, 9:21 pm
My ASD guy is older and his anxiety over the loss of his routine is painful and exhausting. Every day he wants to know when it will be over, multiple times a day. He says what the rest of us think, again and again. The other kids often get very upset, because they maintain by not thinking about it all the time, and when he is upset, you can't get away from it.

He has also decided that under these circumstances, a three day yom tov is impossible, so he is going to need to break it to use his technology. And he is well over bar mitzvah and definitely understands. And halachic exceptions made once will not be understood as exceptions- he will assume this is just him from now on.

I really hope he doesn't get sick. He's miserable when he's sick. Literally. He will bump his knee and get a bruise and be in pain and say, "It hurts! So much! Why is this happening to me?"
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amother




Maroon
 

Post  Sun, Mar 29 2020, 9:30 pm
I am with you 100 percent. Been crying and not managing the last 2 weeks. I have 2 sn kids. Ohel actually called to see how I'm doing and I broke down and said I'm not ok. My husband is out working all day and I cant manage without any help.
They said they will send me some toys to keep him busy. God bless them
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mommy3b2c




 
 
 
 

Post  Sun, Mar 29 2020, 9:44 pm
amother [ Silver ] wrote:
I don't want to spread panic. Just that if there's a shortage of hospital beds they could deny care to our kids ch"v.


Are you joking??!! Don’t say something so stupid!! No one is denying care to children with Down’s syndrome.
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