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Purim and the Special Needs Child
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amother




Crimson


Post  Sun, Mar 10 2019, 7:49 am
Here it comes again.
A Yom Tov that I’m dreading & cannot wait for it to be over. This is not just a vent: I’m looking for some options. But perhaps there really isn’t in our religion.

For some reason Purim for my 14 year old high functioning ASD son is just sooooo hard.
Which part is so hard? I’m going to real it down:
Pre Purim - he is NOT interested in thinking about, talking about any dress up or making any MM. Day before Purim he thinks of something. Even when he makes the absolute minimum MM it’s a chore, ‘work’. Not fun for him AT. ALL. I get that. I hate forcing him but feel we have no choice.
He’s ok at Megillah reading at night & next morning.
Purim day is soooo long. He’s my youngest & older kids not around. 2 are married and OOT & the other one has kids of their own & busy doing their own thing. nothing much happening in my home during day. He’s rude & abnoxious if anyone happens to come over and deliver MM to us. Which hardly happens at this point in our lives.
We make him come out & deliver to a couple of ‘friends ‘ of his and his few teachers, Rebbe.
By the time it’s the Seuda he is DONE.
last year we went to my machatonim.
He was soooo hard & just did not want to be there. He made things so miserable for me that I left early & was so upset & embarrassed. My other kids think he gets his way with us & manipulates me especially & it’s my doing. Maybe it is. I don’t know.
But I dread Purim I hate it.
Wish I could leave for those 24 hours.
Where can we go? I seriously want to.
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amother




Cobalt


Post  Sun, Mar 10 2019, 8:09 am
I have an ASD child too and understand the difficulty. The extra noise and stimulation and the change in schedule can really throw him off.

A few suggestions:
1. Can he deliver to his Rebbeim before Purim and leave only 1 to give on Purim? I wouldn't push him to give too many friends on Purim if it's causing him stress.
2. Not the end of the world if he doesn't dress up.
3. Can you allow him to eat a quiet earlier seuda himself at home and not force him to eat with everyone else?
4. Can you give him a quiet spot in your house to hang out for when it gets to be too much for him?

ASD children process their surroundings differently. I feel strongly that we should do our best to make them comfortable and only push them slowly and gently past their limit. Pushing too much past their limit causes stress for everyone, not just the child, and doesn't do anyone good.
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amother




Ecru


Post  Sun, Mar 10 2019, 8:21 am
Unlike you I have not raised a child to.adulthood so I am not really qualified to comment - bu everyone knows how much easier to deal with someone else's virtual (although real !) problems than one's own right? So with that grain of salt, let me say the following...

I have several kids with asd including a 15yo. One thing that jumped out at me about your post was the use of the word "forced". IME you should /can't force anyone to do anything, but if there is two categories of people whom it's NEVER worth trying to force it's a person with autism and a teenager. And if there is one area of life where you should not force it's religion.

So, bearing that in mind, I would drop almost all expectations of him. Certainly answering the door to unexpected random people (even if he knows them) is SUPER Stressful for someone who has asd, and should be avoided.

I think you need to do things that could make him happier whilst still supporting yourselves.
Can you ask him how he would like ro spend the day? Is it possible to hire a carer /support worker to help this happen, so you don't need to shlep him along to a suedah? He can send MM etc through a Shaliach, in fact many hold that this is preferable.

Finally does he take medication? I find ab extra dose of resperidal or serequel works wonders for this type of situation.

Having said all that I KNOW IT'S NOT EASY and often everything that cash go wrong will go wrong, and in the end you can control nothing except yourself.

And it's hard. Wishing you much strength and success
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amother




Crimson


Post  Sun, Mar 10 2019, 8:41 am
I so appreciate your replies, both from experienced moms.
I agree on all of your ideas & wish I can implement them.
He does answer the door - we do
He does stay in his room when things are too much for him and he does know it’s an option for him and we mutually respect.
There are only a few MM that he delivers. Like maybe 3. I guess we can send his MM to school beforehand.
I’ll diescuss with him.
I did talk to him this past Shabbos & asked for his feedback.
The idea of having him eat an early Seudah is good but who would stay with him if we go out? I don’t live in a city where there are respite workers available for this type of thing.
My idea of the perfect day for him?
Would be to check into a hotel & take him swimming!
He loves to swim. I know that sounds crazy.
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mommy3b2c




 
 
 


Post  Sun, Mar 10 2019, 8:52 am
amother wrote:
I so appreciate your replies, both from experienced moms.
I agree on all of your ideas & wish I can implement them.
He does answer the door - we do
He does stay in his room when things are too much for him and he does know it’s an option for him and we mutually respect.
There are only a few MM that he delivers. Like maybe 3. I guess we can send his MM to school beforehand.
I’ll diescuss with him.
I did talk to him this past Shabbos & asked for his feedback.
The idea of having him eat an early Seudah is good but who would stay with him if we go out? I don’t live in a city where there are respite workers available for this type of thing.
My idea of the perfect day for him?
Would be to check into a hotel & take him swimming!
He loves to swim. I know that sounds crazy.


So why don’t you do that?

In the morning listen to Megillah.
Have him deliver one Shalach Manos or send through a shaliach.
Give some tzedaka.
Check into a hotel and let him swim all day.
Go to a restaurant that serves bread so that it can be a seuda.
Everybody Goes home all happy and relaxed and having fulfilled all four mitzvos.
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amother




Indigo


Post  Sun, Mar 10 2019, 9:39 am
I don't have a child with ASD so maybe I am not qualified to day anything. Your last post with swimming jumped out at me. I know quite a few families who have gone away for Purim. Some went skiing or to Florida. Nobody days you need to be home to have Purim. I would listen to megillah give out mm and take him swimming. Wither restaurant or bring along food for seuda.
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ra_mom




 
 
 


Post  Sun, Mar 10 2019, 9:48 am
Do it crimson! What could be more appropriate than bringing simcha on this day to your child and to you and dh! Very Happy
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studying_torah




 
 
 


Post  Sun, Mar 10 2019, 9:54 am
Why must your son make or deliver mm? Ask your rabbi if he can be yotzei with yours.
Honestly this is stressing everyone out way too much, so don't do it.
Make the mm & deliver it yourself.
Take a megilla and food with you to a quiet hotel and enjoy. Read it there, go swimming, have a private seudah and relax.
Let your son enjoy yom tov for once, even if it isnt the standard way.
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amother




Wheat


Post  Sun, Mar 10 2019, 10:25 am
We have never gotten a diagnosis but my child is in some ways similar in sensitivities to what you described. I know that feeling of thinking you must do XYZ because.. just because. My child doesn't dress up unless he wants to. We have had years of no costume or just part of a costume, its all good. There were always dumb comments, but we learned a chit-chat smiley response or two and learned to let it go. Who cares, its my family and we get to decide. We aren't murdering anyone for heaven's sake. It isn't an insult to G-d and the universe if we don't do costumes. We used to attend a family seudah that was loud and abrasive. Even I hated it. We stay home now. I know that we are viewed as a bit different, but you know what. My children are joyous. They ask about what we will serve and I make sure that everyone has a favorite food. We do what works for us in our own quiet way.

Your comment about swimming honestly sounds perfect. I told my DH a few weeks ago I wish we could just go away for PUrim. Its not my best holiday. If you can swing it, I think you should go for it. Lol, tell me where you're going and maybe I'll come along Smile
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amother




Wheat


Post  Sun, Mar 10 2019, 10:27 am
Oh, and thank you for posting. Honest and real posts like yours create awareness of and understanding for special needs children and their families.
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cuties' mom




 
 
 


Post  Sun, Mar 10 2019, 10:31 am
I have a ten-year-old son with ASD (low functioning, nonverbal). I do have ds dress up just so that he knows it's purim. I have him get dressed for Shabbos also, and while that used to be a challenge, he knows he can't have any kugel until he's wearing Shabbos clothes, so he eats kugel for breakfast every Shabbos morning. For a high functioning kid who knows that it's Purim, I wouldn't push a costume. I let ds choose if/when to go out to deliver shalach manos and only do a drop at a time so he doesn't get overwhelmed. Otherwise, he spends most of Purim day watching videos on youtube. Micha Gamerman is our lifesaver every yom tov; the maccabeats have a great Purim video, and the kinderlach are always fun to watch.
As far as the seuda goes, we usually go to my parents. Many of my siblings are there with a bunch of kids, and ds finds it very overwhelming. He likes to eat, but once he's done, I'm fine staying with him in the playroom or wherever he finds a quiet place. I don't bring him to my parents on Shabbos anymore since he finds it too stressful, and my mother complains that we never come, but Purim, I do make the effort to bring him over.
BIL is flying to Florida on Purim this year. He does not have autism, but as a single older guy, he also prefers to spend his Purim swimming rather than watching all his friends have fun with their kids.
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Forrealx




 
 
 


Post  Sun, Mar 10 2019, 11:12 am
I was ( and I m) an ASD child. And I can really speak for your son those things are soooooo hard. It is long, change of schedule you need to wear ''strange'' clothes lots of noise and interacting with people and find that funny. Like I also don't know how to do that. It is hard to have no special ''task'' for example... As kallah I was helping out the sliach in my small town (for childrens club and jewish lessons) and she had a baby I needed to take care of. That was my ''role'' it was clear I needed to take care of the baby, bottlefeed her, made her asleep, rock her, walk with her and change her.
So when the baby cried and I was on the toilet another woman had took the baby so I was kinda flabbergasted.... as child I would have cried or been angry or something but then I realized hours later why I was upset at this woman.
I had not clear ''task'' anymore. She took it from me but it was my task! And that is what I can't communicate on that subject.

Purim is LOTS of impressions, noise and everything... you can't prepare on that it is BOOM. It is like you don't have a filter, it is like everyone else has mental sunglasses but you.
So make it freindly for your son... Make it easy... Really think about how some people with ASD the world, it is all cluttered and it does not make sense. Me too, I have embarresed my parents, and everytime when there was a bgi party and so on, and I felt guilty about it, just try to communicate with your son ask him what he finds hard and how he wants to spend purim.
He is 14 he is already a big boy who needs to learn what helps him.
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amother




Ecru


Post  Sun, Mar 10 2019, 12:30 pm
I posted upthread but having seen your update- just go swimming!

Especially if you yourself would enjoy it. Perhaps you have some friends (like a couple w no kids at home) who would like to join you, to make it more interesting for YOU, without pressuring him.

Go swimming. Great great great idea.

And - isn't Adar the star sign of the fish? (check that out). Cool and appropriate.
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FranticFrummie




 
 
 


Post  Sun, Mar 10 2019, 1:13 pm
DD isn't on the spectrum, but she has a lot of sensory issues, high energy, etc. She has always been terrified of Purim noise, the sound of a shofar, and large crowds.

The best Pesach we ever had, was when we went to a hotel. She was in the pool every single chance she got. Sometimes I swam, sometimes I just brought a good book with me. She was in heaven, and so much easier to deal with when she was physically exhausted. It improved her sleep, too.

When we moved to a new town, the first thing she asked was "Is there a pool?"
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amother




Royalblue


Post  Sun, Mar 10 2019, 7:15 pm
I'm not sure why you feel your son must prepare and deliver mm. If it makes him uncomfortable he probably doesn't have to do this. Please ask someone. It's great he's able to go hear megillah. Would he like to give money to someone needy? If he has his own money he might want to and if not you can give on his behalf. Is there some kind of meal you can prepare that he likes? I understand it might be hard for you to skip the bigger family gatherings, but maybe try a small enjoyable meal at home. Let him choose the menu, the timing, the location, the music or no music. Take your cues from him and try to make the day as enjoyable (or bearable) as you can together.
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amother




Lime


Post  Sun, Mar 10 2019, 7:22 pm
great ideas
and the swimming does not sound crazy nope not at all
hugs and hatzlocha
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amother




Brown


Post  Sun, Mar 10 2019, 7:52 pm
Just chiming in here as someone with very little autism experience but lots of Purim dread experience ( otd teen/ older single at different points, husband doesn’t enjoy it)

We have done Florida and loved it. We have done super low key Seudas with just us etc. Bh it’s at a point where we forgot we used to dislike Purim and let go of the precocieved notions of what it’s meant to be....

would totally do a hotel for the day-tell him u want it to be bsimcha/ swim like fish whatever makes u feel better about it. After megilla twice, deliver ur few shalach manos and feel like u fulfilled Purim then find an enjoyable way to spend the afternoon. I would probably bring along deli sandwiches and cut veggies or the like for the seuda with festive paper goods.
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amother




Crimson


Post  Sun, Mar 10 2019, 9:42 pm
OP here
You all gave me a ton of chizuk.
Thank you sooo much!
I think I’m gonna really make this work!
We can hear the Megillah in morn.
Deliver a couple of MM.
No dressing up in costume.
will prepare some food to be our Seudah and eat at a hotel.
Check into one & swim the afternoon away & eat in the hotel room after a few hours of working up a nice appetite from swimming.
Maybe we can even sleep over Cz no school next day.
The more I type the more I like this idea:)
Now I have to convince my Dh to try it.
Will beg him to have an open mind & do it this way this one time and see how it goes.
Again thank you for your input
Will keep you all posted !
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imasinger




 
 
 


Post  Sun, Mar 10 2019, 9:44 pm
One more idea to what's already been said.

You don't have to do a seudah late in the day. You can do a breakfast seudah right after davening.

The 4 mitzvos of Purim do not include wearing costumes, enduring uncomfortable situations like loud parties or noisy megillah readings, or delivering more than one MM.

That being said, I do find it's helpful for SN kids who are high enough functioning to know that they are needed, part of the team.

What if, rather than assigning him tasks like MM preparation, you made a list of everything that needed doing, and asked him to pick two things from that list to be his responsibility?

Maybe he would enjoy plotting the delivery route, doing some budgeting work (projected and actual costs), or making a schedule of which megillah readings to attend.

Your other kids are in need of some firm parenting. They have been rude, uninformed, and inappropriate. Focus your efforts on their self correction, if that's the real issue. Whatever counseling your DS is getting, look to that person for guidance, rather than your other children. And then say that you are following professional advice, topic closed.

Where does your DH sit in all of this?
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amother




Crimson


Post  Sun, Mar 10 2019, 9:58 pm
imasinger wrote:
One more idea to what's already been said.

You don't have to do a seudah late in the day. You can do a breakfast seudah right after davening.

The 4 mitzvos of Purim do not include wearing costumes, enduring uncomfortable situations like loud parties or noisy megillah readings, or delivering more than one MM.

That being said, I do find it's helpful for SN kids who are high enough functioning to know that they are needed, part of the team.

What if, rather than assigning him tasks like MM preparation, you made a list of everything that needed doing, and asked him to pick two things from that list to be his responsibility?

Maybe he would enjoy plotting the delivery route, doing some budgeting work (projected and actual costs), or making a schedule of which megillah readings to attend.

Your other kids are in need of some firm parenting. They have been rude, uninformed, and inappropriate. Focus your efforts on their self correction, if that's the real issue. Whatever counseling your DS is getting, look to that person for guidance, rather than your other children. And then say that you are following professional advice, topic closed.

Where does your DH sit in all of this?

My DH? Well he’s pretty much an in the box type of thinker. Although he is very good with my son, I think I’ll have to really get him to try something new this year. He is a bit of an old fashioned thinker when it comes to religion
But he just might be ok with this idea.
Hard to say. I DO know that if my Dh is on board then my SN son will be more into this as well.
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