Going out in public with Asd child

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Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)

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amother

OP ↓

Thu, May 23 2024, 1:17 pm

My daughter was diagnosed with autism about two years ago. Of course it was a roller coaster of emotions but BH we have come to accept and love our child . One issue that I can’t seem to move past is the inability to easily go out in public .
Previously we were able to spend a day at the park , I would sit on the bench and watch the kids play. Unless I have a mothers helper, that isn’t something I can do
Or even take my kids grocery shopping
Or spending a day out at a fair or festival . Going to shul . Or even allowing the kids to play on the block - within five seconds she can runoff and disappear.
I don’t think we would qualify for an aide. Hiring a full time mothers helper is out of our already deficient budget .
Curious how other navigate this as it is the one thing that is weighing me down . It’s very hard to be trapped at home

amother

Firethorn

Thu, May 23 2024, 1:19 pm

Where do you live? In NY, you would likely qualify for some form of support to allow you to do those things

amother

Arcticblue

Thu, May 23 2024, 1:20 pm

Where are you located? Many people I know get volunteers through Lev with love to take their child out. Is that something that would work for you?

amother

Scarlet

Thu, May 23 2024, 1:21 pm

Do you get respite? Most places have some sort of babysitter program where someone comes to watch your kid a few hours a week so you can get out and do things.

amother

Crystal

Thu, May 23 2024, 1:31 pm

This is a big part of being a special needs mom that is so hard. There was recently a thread on here about how there are many moms who cannot sit on a bench at the park, but it's rotten when you seem to be the only one, when you may even have friends there and can't stop to talk to them. Look for playgrounds with gates.

You will need to figure out how to do errands without this child, at least for now. It's good to take them on a semi regular basis, but always knowing that you may not be able to finish. Depending on the age of the child, I know it's controversial, but I liked the backpack leadh things- they gave me control and my child some freedom. When I went to Target, I would look for the big cart that let me strap him in- and sometimes leave if it wasn't available. I stopped taking him grocery shopping- I made shorter trips on the way home from work when I couldn't order. I stopped going to kiddushes except to say mazal tov, get the kids some food if he was behaving, and leave- and for a couple years I didn'tgo at all. No fairs or the like unless dh was there- one of us would be just for him.

Look for a local chesed organization. In the US, there is often Friendship Circle, or the bais yaakov girls do chesed. Sometimes you can get someone to accompany your family to an outing. Or just to stay home withh the kid while you go to the store.

And get a behaviorist to work with you on specific things. Goal- to take dc to x place. Theu will work with you on it, break it down it components, talk about what itls realistic.

amother

Lightblue

Thu, May 23 2024, 8:34 pm

My 15-year-old has low functioning autism so I had plenty of time to learn how to do things.
We go to the park all the time, but I know that I'm not sitting on the bench. When I lived in a community where I had friends, my friends learned to move with me if they wanted to talk to me. I moved recently, so that's no longer an issue. If ds is on a swing and the rest of the swings are empty, I'm able to sit near the swings. If he's on a swing but there are people on other swings, I stand close enough to his swing to grab him when he goes off, so he doesn't head for an occupied swing. When ds climbs, I climb with him. At this point, he's obedient enough to wait at the top of the slide while I go down and around to stop him at the bottom.
Ds loves grocery shopping. When he was young enough to sit in a stroller, it was much easier. The cashiers never batted an eyelash when I paid for empty yogurt cups that ds drank while I waited in line. One cashier even offered him a spoon one time when he was struggling to open a half gallon of ice cream. Once he learned to climb out of his stroller, I had to use a leash for a few years. Meanwhile, his school worked on walking nicely and when he started comhab, his comhab worker used to do scavenger hunts in Trader Joes. The result is that ds is a very savvy shopper. He is the designated shopper for his school's cooking class. Someone always has to go with him obviously since he can't walk outside himself or pay for his purchases, but he can find everything on the list. I take him shopping all the time and follow him around the stores. It takes work, but with help, you should be able to handle shopping again in the future.
Fairs and festivals are still a no-no unless they include a concert. I don't know how your dd reacts to music, but for ds, music is magic. Live concerts are even more magical. I wasn't brave enough to take him to concerts until he was 10, but concerts are a lifesaver. I can sit in one place for 2 hours straight without having to worry about ds making any trouble.
Shul only happens simchas torah or when obligated. For Rosh Hashana, dh and I used to decide every year who is going to neitz and who is going to the regular minyan. Most years, I went to neitz and went home after the first shofar so dh could go to shul. When dh went to neitz, he came home in time for me to catch mussaf. My new neighborhood doesn't have a neitz minyan so I'm going to have to figure out what to do next Rosh Hashana. On Purim, there are multiple megilla readings so dh and I go different times.
Playing on the block isn't really a thing where I live, but we have a swing and a trampoline on the deck. It's a lifesaver as ds can play outside by himself since the deck is fully enclosed.

amother

↑ OP

Thu, May 23 2024, 8:55 pm

I appreciate all your responses
I’m not in the NY tri-state area .
I’m newish to the whole special needs community . I used to volunteer for friendship circle and other SN organizations- I haven’t accepted the fact that I may be one the clients on the other end of the equation and it is ok to take help from organizations… I guess I need to work on that

marineparkmom

Sun, Jun 16 2024, 7:50 pm

I would encourage you take as much help as possible

amother

Lavender

Sun, Jun 16 2024, 9:29 pm

OP I get you, I took my child to a party and dc had a major meltdown. The worse is that my child is somewhat aware even though a preschooler and felt so bad after. I felt humiliated and so did dc Sad

I know it's not my fault or dc's fault but it's still embarrassing.

amother

Feverfew ↓

Mon, Jun 17 2024, 2:33 am

I never go anyplace. I do feel incarcerated. You must be a better person than I am because I’m bitter and sad and angry very often. My son is simply only semi manageable at home. Grocery? Park? Family event? Never.

amother

Pumpkin ↓

Wed, Jul 03 2024, 11:38 pm

amother Feverfew wrote:

Why are you bitter? Can you tell me more about your son?

amother

Puce

Thu, Jul 04 2024, 7:58 am

I took ds9 with high functioning asd to the supermarket this week. It was so hard. He kept bumping into people or standing in the way of shopping carts. I reminded him so many times to look but not touch things.

I was so burnt out after the trip.

amother

↑ Feverfew ↓

Thu, Jul 04 2024, 8:17 am

My child is nine. I’m way behind you in processing the messy and complicated emotions involved in a child with a disability(in my case it’s pretty profound) I go no place. It’s very hard, but having made a whole bunch of attempts each with a disastrous result. I stay home or DH stays home. That’s the end

amother

↑ Feverfew

Thu, Jul 04 2024, 8:19 am

amother Pumpkin wrote:

Why are you bitter? Can you tell me more about your son?

My son is handsome. Tall broad shoulders. Clever, manipulative, enterprising, creative. Obstinate and headstrong. Extremely bright. Hates babies. Loves pizza idk what else you’d like to know

amother

Bellflower ↓

Thu, Jul 04 2024, 8:34 am

amother Feverfew wrote:

My son is handsome. Tall broad shoulders. Clever, manipulative, enterprising, creative. Obstinate and headstrong. Extremely bright. Hates babies. Loves pizza idk what else you’d like to know

That was a real hug. I really feel you.

amother

↑ Bellflower ↓

Thu, Jul 04 2024, 8:43 am

amother Pumpkin wrote:

Why are you bitter? Can you tell me more about your son?

I don't get it. Why are you asking why she's bitter?

She's stuck at home with a kid who probably looks normal and CAN act okay if he wants to for something important to him but when she wants to get out she can't because his behavior traps her at home.

Like...why are you judging her????

amother

↑ Bellflower

Thu, Jul 04 2024, 8:47 am

amother OP wrote:

I have two on the spectrum. One I cannot go out with, at least not for more than 30 minutes for something he really wants. Like last night I took him and another kid to buy shoes after he'd been begging. It worked well other than him shoving himself in my face and nagging me a million times after he'd chosen his shoes. But no outbursts.

That was a rare outing.

The other ASD kid (who I also took last night) is usually fine when we are out. I can take that child out with siblings most of the time with no issues. And any issues are normal kid issues if you get me (other than touch-touching everything which is better with Ritalin). But this first kid, omg omg omg since he was 2 it's been an issue to take him anywhere, he's lost us friends and acquaintances and Shabbat invitations and guests and omg you just can't take him anywhere.

I've started planning kid outings without him and for times he's in school because guess what, the other kids deserve to live life, not be trapped and deal with tantrums and stress at home all the time. DH understands (though I think he is upset that I've "given up" on this one kid) and the kid is resentful that I've started doing it, but you know what, I've lived with enough guilt for enough years to not care, and the other kids have lived missing out and upset and resentful watching this kid kill outing after outing either by canceling it or ruining it, so if this kid is upset then I am past caring. And if DH is upset then I am past caring. And that's that. If DH wants he can take the kid out himself (Spoiler: He doesn't want. He's not up to it. And he likes staying home anyways lol so it works out ok.)

But OP for years. Years. Years. we were trapped at home with this child because of this child's behavior. Years. You don't know how many. It was just awful.

TwinsMommy

Sun, Jul 07 2024, 8:51 pm

We stopped having Shabbos guests and other than 2 families we say yes to very occasionally WITH permission from both twins (both have autism), we don't go to other's homes for Shabbos/ Yom Tov anymore. It's REALLY REALLY HARD but life is a whole lot easier since we stopped trying. In terms of other stuff...... NO concerts, no parties, no kiddushim..... very occasionally we try Walmart or Target or out for lunch or ice cream---- but they absolutely refuse all outdoorsy stuff like hikes or long walks or checking out nature center type of stuff. It's a whole different life than I expected.

meyerlemon44

Sun, Jul 07 2024, 8:58 pm

TwinsMommy wrote:

This rings so true to me. Being a mom and Yiddishkeit are totally different than I expected, and not in a good way, at least for me.

amother

↑ Pumpkin

Sun, Jul 07 2024, 10:56 pm

amother Bellflower wrote:

RELAX! I am NOT JUDGING! I also have a son on the spectrum and he is extremely difficult, and only getting harder every day.
I took my kids to the park today and he was terrible.
Screaming, fighting, bumping into the swings, running into traffic etc.
I guess I just never thought of my feelings as anger, and that's why I asked. I am literally just worried that I will get to that point too, based on his current behavior...
I would say I am sad, worried, concerned but also very grateful for him.

After today's outing I came home and said, "never again". It;s so embarassing too.

I have another child with asd too. He has a more pleasant personality, but is always knocking everything off the shelves in stores, and gets lost within seconds. He also has no fear at all and will walk off with a stranger if I let go of him....

Yes, a really big challenge....

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