Taking an ill child to a simcha

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amother

Olive

Wed, Jul 04 2018, 7:54 am

amother wrote:

No, it's not at all the same as saying she's uncomfortable around people with special needs. And it's one of the saddest things I've ever read on imamother.

Yes that's how I felt reading that how can someone say they hate people like that especially children it breaks my heart. No on asked to be like that and imagine if a parent of a child like that reads this post like I said this whole post makes me sad.

Amarante

Wed, Jul 04 2018, 8:17 am

Why isn't it possible for the suctioning or whatever else be done away from the crowd. Under the circumstances I would ask the host if I could use a vacant room just as some people might nurse away from the crowd or normal people wouldn't change a diaper where people are eating.

Perhaps I am missing something.

amother

Hotpink

Wed, Jul 04 2018, 8:38 am

Amarante wrote:

She said it was constant. If it was done away from the table this guest, and her child would effectively not be at the simcha.

amother

Hotpink

Wed, Jul 04 2018, 8:42 am

amother wrote:

No, it's not at all the same as saying she's uncomfortable around people with special needs. And it's one of the saddest things I've ever read on imamother.

I agree - I also think she didn't mean it the read it was written.

amother

Babypink

Wed, Jul 04 2018, 8:55 am

Yes, as a parent of a special needs (medical) child I found that comment beyond sad, in addition to incredibly hurtful. Listen people, these special kids (and adults) are PEOPLE too!! They- and their parents- have every right to be in public places, with whatever equipment and procedures are necessary. As many amothers said, though it might make them uncomfortable, they recognize that it is their problem- but some don't really seem to. And just as an aside, I believe that anyone who pushes him/herself past the initial 'distaste' to actually get to know the person would change his/her tune. And for the record, my child probably was at one of those chasunas. It's NOT easy to transport him/her but it was important to the kallah. I still can't get over the wording "hate special needs people". And I agree with op; it was okay for her to feel uncomfortable but the mom was doing nothing wrong. Sorry for the long disorganized rant. I do take this personally.

amother

Seafoam

Wed, Jul 04 2018, 10:16 am

I want to respond to the OP.
I have a 5 yr old niece with special needs. Medical- trach, feeding tube etc. And neurological defects.
Yes she doesnt care if she is by birthday parties family barbecues and sheva brachos.
But my sister cannot leave her with a regular babysitter the way one can with a needy toddler because not many are equipped to handle her needs.
So she comes. To most family events because shes family. And if she doesnt come, either my sister or brother in law cant.
And yes the suctioning made me uncomfortable at first. But it needs to happen. Sometimes as frequently as every 5 minutes. And its the same to my sister as wiping my 2 yr olds nose. Regular life.
So the discomfort is my problem. Not my sisters and definitely not my nieces.
Annonymous to protect my sisters identity.
And I just want to point out if the suctioning bothers you- say Asher yatzar with extra kavana.

amother

Babypink

Wed, Jul 04 2018, 11:59 am

Thank you seafoam for your well-expressed post. Let me add that I can't imagine any special needs mom/caregiver changing a diaper (colostomy bag?) in public, but suctioning? The kid's gotta breathe! And it can be more often than every 5 minutes. Like seafoam said, it's like wiping a nose to these families: not so pleasant but necessary and normal. And the parents often canNOT get a reliable caregiver/sitter. Oh, and I know seafoam's niece is unaware; just want to point out to everyone else that many of those kids who LOOK unaware are completely cognizant and interested. I' involved with several non-verbal kids whose faces don't show much expression, but once you know them well you see how aware and bright they are, and how much real joy they experience from being included in the simcha of someone close. If dealing with these issues is not your reality, be grateful. And believe me, these moms don't want or need your pity, just a little understanding and acceptance.

Raisin

Wed, Jul 04 2018, 1:24 pm

I've never been around a child with this specific type of issue, although I've been around plenty of special needs kids. So I don't know exactly what is meant by suctioning. But just as with allergies - its annoying not to be able to send peanut butter sandwiches to school with my picky child, but it would be so much more annoying and stressful to have a kid with an allergy. I would have the same attitude with such a chronically sick child - while it may be distressing to see a child like that, and to have to watch the procedures being done, I get to go home tonight with my healthy children bh. This mother gets to go home with her sick child. Sad

At least she got to go out and go to a simcha tonight. I would try my best to not express my discomfort and make the mother feel guilty.

amother

White

Wed, Jul 04 2018, 8:00 pm

Like others amothers said. do you know what it entails getting a trached kid out of the house? they were obviously not able to miss the simcha. thats A.
B. for some people with a trach, waiting an extra second to suction can be life threatening. so no option of going into another room.
& really, what is the big deal? did the child spray you up with mucus?

amother

White

Wed, Jul 04 2018, 8:04 pm

http://complexchild.org/articl.....ette/

amother

Cobalt

Thu, Jul 05 2018, 4:36 am

amother wrote:

Yes, as a parent of a special needs (medical) child I found that comment beyond sad, in addition to incredibly hurtful. Listen people, these special kids (and adults) are PEOPLE too!! They- and their parents- have every right to be in public places with whatever equipment and procedures are necessary. As many amothers said, though it might make them uncomfortable, they recognize that it is their problem- but some don't really seem to. And just as an aside, I believe that anyone who pushes him/herself past the initial 'distaste' to actually get to know the person would change his/her tune. And for the record, my child probably was at one of those chasunas. It's NOT easy to transport him/her but it was important to the kallah. I still can't get over the wording "hate special needs people". And I agree with op; it was okay for her to feel uncomfortable but the mom was doing nothing wrong. Sorry for the long disorganized rant. I do take this personally.

I agree. I don't understand why posters kept saying if there was insistence they be at simchas.

If there is a simcha and regular children in their category are welcome, then they don't need a special invite.

amother

Lawngreen

Thu, Jul 05 2018, 4:56 am

amother

Khaki

Thu, Jul 05 2018, 5:19 am

Come on. You don't need to attack the posters here. Most of the thread was pretty respectful up to this point.

Last edited by amother on Thu, Jul 11 2019, 9:35 am; edited 1 time in total

amother

Yellow

Thu, Jul 05 2018, 5:23 am

On a side note thank you to the posters who educated. I learned some things I did not know before and would helpfully help me understand certain situations a bit better.

Heroes mamash heroes.

amother

Babypink

Thu, Jul 05 2018, 7:22 am

Most- though NOT all- posts were respectful while many were incredibly supportive. (A couple were downright offensive) However I did find it disturbing that several posters (not the op, not most) were JUDGING whether a medically dependant child has the right to be in public, and to have his/her immediate needs cared for - even if this judging was done politely. I don't know a single special needs parent who intentionally grosses people out- most act as unobtrusively as possible- and the thought that fellow frum mothers feel entitled to judge us for doing our best to help our children to safely lead as normal a life as possible is simply... disturbing.

amother

Wine

Thu, Jul 05 2018, 9:54 am

I found the OP sad.
What do YOU suggest, op? The parents never attend simchos? Their child be institutionalized? I lived near a Bikkur Cholim apartment and we have hosted many sick children. I have watched a child be suctioned many times throughout our Shabbos meal. I would never sniff that those people should tend to their child behind closed doors. If neighbors and relatives shouldn't invite these families, who should? Should we have not invited them? The kindest thing you can possibly do is welcome them with open arms and swallow your distaste. And like someone else said, daven asher yatzer with extra kavana. Aside for the schar we got for mitzvos that were at times hard for us, my kids gleaned an extra measure of sensitivity. We have had many burn victims at our Shabbos table and I can only say it's a benefit for my children. But we don't do it because WE benefit, but to give a small measure of happiness to a greatly suffering parent. (PS- did you know they often have to suction their child the entire night, and therefore do not sleep? And you're complaining about "seeing" this? I can think of worse things for you to complain about).

And another PS - I suggest everyone read the kid's book Wonder by R. J. Palacio. Get it out of your local library.

amother

White

Sat, Jul 07 2018, 9:20 pm

amother wrote:

Thanks wine. great post! as a parent to a child with a facial anomaly, I appreciate the book suggestion & ordered it. and so true about your PS, guess who didn't sleep this night & there's a reason I'm allowed to be mechallel shabbos for this. so this same reason can explain why it often has to be done at a Simcha table...

MyUsername

Wed, Jul 11 2018, 3:12 pm

I think it is ok to feel uncomfortable around it, as long as you realize it is completely ok for the mother to take care of her child. No one said you have to feel comfortable around these things - I feel uncomfortable every time I watch a diabetic prick themselves to take their blood sugar, but I would never think they need to run off to a different room 20 times a day just because I don't like to see it. Or I have been told that sometimes people don't like to watch me use my inhaler, but it is completely reasonable for me to use it where I need it even when it is not an immediate emergency. So same thing goes here. Also, the more mainstream it is to see people with different medical needs going about their daily life in different ways, the less bothersome it will be for everyone.

Two more things:

First, for those of you who suggested that someone should do this in the bathroom, please understand that this isn't a suggestion you should make to someone with a special needs child - would you go prepare a bottle and feed it to your baby on a toilet? It is unsanitary - this is even more important for a trach, as it leads directly into the lungs and protection from infection is critical. So while some medical needs are best met in another room and there are times where that isn't unreasonable, the bathroom is always the last place you should suggest (unless it involves bathroom type material).

Secondly, for people who think that a child who is unaware of what is going on should not be at a family simcha may want to rethink this. What if it was your aging parent with alzheimers who had no idea where they were - should they be excluded too since they don't know? Or your 5 year old daughter to your sons bar mitzvah but not your 2 month old daughter who wouldn't know what was going on? Or invite your typical brother to your wedding but not invite your special needs brother? Even those who are not able to understand everything are still part of the family and should be included the same as their typical counterparts. Furthermore, if they are not comatose (or maybe even if they are in some cases), special needs kids (and babies and people with alzheimers) are still aware of their environment, and can enjoy the festive atmosphere, fun foods, excitement of people, bouncy music, colorful things to look at. Just because a special needs child isn't shepping nachas over the significance of a 3 year old getting a haircut or a girl turning 12 years old, doens't mean they don't enjoy the simcha, or that their joy in it doens't contribute to the simcha as well. Think of a typical two year old looking at a colorful balloon or listening to music at a party or gathering, they don't always understand the occasion, but looking at the balloon or listening to music brings them happiness and delight, and even more significantly for a simcha when people see the way their eyes light up and their smiles and giggles this brings further happiness to the people around them. I hope one day you meet a special needs child who can give you that joy the way no one else can.

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