S/O DD Volunteering

amother

Mon, May 01 2023, 9:01 am

I hear the pain that parents of special needs children go through.
And my question is really meant for those parents whose children are so impaired that they have no understanding of who their parent is or where they are.
Why do these parents keep their children home?
I understand loving a child, but at what cost?
People in the other thread posted about not being able to go to the bathroom spontaneously ever. About not being able to spend quiet quality time with their other children. It sounds like their social lives must suffer, and I would venture to guess their marriages also.
Isn't there a time that a residential facility would be a better option?

amother

Silver

Mon, May 01 2023, 9:37 am

I don't have a special needs child, but:

Just because the child doesn't know who the parent is, doesn't mean the parent doesn't know who their child is and love them. Little kids are especially loveable, even when severely disabled. When they grow up, most will be put in institutions.

The older they get, the harder it becomes, especially physically, trying to change a 150 lb 15 year old's diaper vs a 30 lb 3 year old. But also emotionally harder, and the parents are older and have less energy.

With a 3 year old, even severely disabled, they are not really that much different than a baby, and I totally understand why a parent would want them at home.

I haven't been there myself, but I IMAGINE that if I were in that situation, I would keep the little kid with me even if they didn't recognize me. Then at some point when they got bigger I would institutionalize.

amother

Seafoam

Mon, May 01 2023, 9:48 am

My relative had a child with severe medical and cognitive disabilities.
After a few years, she ended up placing the child in a long-term care facility.
The amount of judgement and criticism that she received from friends and neighbors was mind-blowing. People who never once even sent her a kugel, yet felt it was their obligation to tell her how bad of a mother she is, after she received psakim from huge gedolim that she was REQUIRED to place the child because the burden on her health, her other children and her marriage was huge

As an aside, I'm fairly sure that in that other thread, it's not necessarily talking about such a low functioning child that doesn't even recognize it's family. I understood that it was talking about the low functioning that left unsupervised will hurt a sibling, themselves, or destroy the room.

4321

Mon, May 01 2023, 9:52 am

amother OP wrote:

For the same reason you would never put your infant into an institution. If you feel your infant doesn't know who you are when they are born, it would make most sense to institutionalize your baby until they are about 2 months old. That way you can recoup your energy, focus on your other children and your spouse, and keep a steady routine.

And for the record, I have worked with the extremely low functioning population (non-verbal, non-ambulatory, no response to any stimuli etc.), I have yet to meet a kid who doesn't recognize his mother.

amother

Indigo

Mon, May 01 2023, 10:05 am

4321 wrote:

Came to post very similar. I have worked with a wide range of children and no matter how severe someone from the outside might think they are and how limited the child is, there is still what you can do with them and they totally know their family, and other special people in their lives. I also see the difference with the children that have the parents pushing and trying to always do more and the parents that are content for their child to be fed, changed etc. No residential home, however loving can replace parents and their love.
But I totally understand the parents who can't cope and make that really difficult decision to put their child in a residential facility. And I also understand the parents that make the difficult decision of keeping their child at home and how hard that is.

out-of-towner

Mon, May 01 2023, 10:15 am

OP you absolutely cannot judge.

At the same time, you cannot judge the mother of the other thread for getting frustrated that her daughter is doing a Chessed that is coming at a sacrifice on her own family. There are so many factors and nuances.

BH I'm in a position where currently I'm able to do a few Chassadim that many at my stage can't do. And when I can do it then I try to do it. I know that my circumstances will eventually change (in my case, I'm currently a SAHM due to things beyond my control but eventually I do hope to go back to work and I will have less discretionary time). Every person's situation is different, and it's easy to judge but you never, and I mean never, know the whole story.

flowerpower

Mon, May 01 2023, 10:17 am

4321 wrote:

I guess you never worked with children with low functioning autism.

4321

Mon, May 01 2023, 10:19 am

flowerpower wrote:

I guess you never worked with children with low functioning autism.

I absolutely have! They might not know their parents in a very obvious way, but ask any parent, and they can tell you that their child definitely knows them.

But if you want to go with the argument of the child not knowing the parent, then why don't you institutionalize your infants for a few weeks.

giftedmom

Mon, May 01 2023, 10:20 am

I agree. That thread was insanely judgemental. I know what it’s like to have a low functioning child turn your home upside down, and I don’t think anyone is required to have that even for 2 hours. I believe it’s a hard decision to see through but once you place your child there’s that sense of relief, and honestly if you’re going to do it anyway what’s the point of waiting until it becomes unbearable? The newborn analogy is wrong, as attachment in infancy is the building blocks for life. IYH that newborn will grow up and need to form healthy relationships. But that special needs child will be placed eventually anyway.

amother

Silver

Mon, May 01 2023, 10:30 am

giftedmom wrote:

IMO it is natural for young children to be with their parents, and also natural for teens to move away from the parents, and that doesn't matter whether the child is normal or severely disabled.

The age might vary according to the child's disability and the parents' ability. So a calm, 100 lb child (important because I'm assuming parents need to lift the child for diapers, baths, getting from bed to wheel chair etc) with healthier parents may stay at home until age 20, while a disruptive, heavy child may need to leave the house at age 12.

But a small child is still a small child even if they are severely disabled, and it's natural for the parents to want to take care of them. And a 20 year old is an adult even if she is severely disabled and functions as a baby, she is still NOT a baby, and it natural for the parents to see it fit for her to move to the next stage of her life.

amother

Lightpink

Mon, May 01 2023, 10:37 am

Even the most severely disabled child deserves to be well cared for & loved, & the only way to be certain that that's the case is to have the child with you. They can't exactly explain to you on a visit that the night nurse didn't change them right away or yelled at them or worse.

amother

Seafoam

Mon, May 01 2023, 10:44 am

amother Lightpink wrote:

And this is the judgement I'm talking about.

You have no idea the level of care some medically needy and disabled children need
My relatives child needed to be suctioned round the clock every 20 minutes to 1 hour, needed to be repositioned every hour, fed through the stomach pump every 3 hours.
When she went to the hospital to have a baby, she went alone because her husband needed to stay home with the SN child.
They had home-nursing of an average of 5 hours per 24, when the nurse showed up.

Some children can't live at home without destroying the entire family, even as a little child, even if they deserve it.

amother

Lightpink

Mon, May 01 2023, 10:46 am

amother Seafoam wrote:

Judgement??? On what planet?

I'm trying to explain why some parents chose to do it even though the child doesn't understand the difference. Wasn't that op's question?

amother

Burntblack

Mon, May 01 2023, 10:49 am

giftedmom wrote:

As a percent of a low functioning child I disagree. It’s like you’re saying why live if you will die anyways. Every single day that a kid is home he is getting love and care. The mother knows that each day he’s home he’s safe and cared for. It’s scary having your kid in a group home not knowing if they are in pain or taken care of.
Let me tell you, I send my kid to a top summer camp and I am not calm the whole time.

amother

Beige

Mon, May 01 2023, 11:02 am

amother OP wrote:

Why do these parents keep their children home?
I understand loving a child, but at what cost?

I do think keeping these children home is ideal. And from the tone of most posters who have these children living with them, their lives are happy even with the challenges.

There was one particular poster who seemed very bitter and had me wondering the same. I hope she was just having a tough day. But if her life really is so bitter and bleak like she made it sound then I agree, surely the cost is too high.