Angry at Hashem/special needs kids

amother

Tue, Dec 12 2023, 12:17 pm

I have two kids and they both have special needs. One has really defiant, destructive behavior, and the other one presents as just odd, though not destructive. I wanted to have children my whole life, and I feel very angry at Hashem because I don’t have one child I can take to shul, or to a friend’s house. I’m lonely and disconnected from the community because I can’t take them anywhere. Their behaviors, diagnoses, and treatments run my life.

I don’t know how to come to terms with these feelings. I’m not looking for practical advice, but for any alternative perspectives that might help me accept my life as it is. (We already do loads of therapies and social skills groups.)

I would love to hear from anyone who has experienced something similar.
(I’m not sure which forum to put this in, so I’m putting it here. The special needs parenting one isn’t as active.)

amother

Lightcyan

Tue, Dec 12 2023, 12:19 pm

Hugs OP
Your feelings are so valid

You must be a very special person if you're seeking out other perspectives

Would you be able to connect with parents of similar children through the service providers your children see?

I have one child with ADHD and anxiety
Both of these conditions were only discovered later
Raising him has been a series of bumping my way forward with nary a chance to bandage my booboos

All I can tell you is that it takes time to process the grief and than the reality
and the feelings come and go in waves and their all valid

a combination of allowing myself to feel and grieve
along with reading seforim or listening to speakers who inspire me and infuse me with emunah and the beleif that Hashem is orchestrating my life lovingly help me endure in a world where it seems the only issues people have are when the new season's clothes is coming in

amother

Seashell

Tue, Dec 12 2023, 1:35 pm

A) It's rotten. It just is. Does it help that there are a bunch of us? The others I know are big fans of dark humor. I do find it helps.

B) Accept help, if you can get it. Somewhere are those young women in your town who can handle this. There are likely a bunch who can handle one of your kids, and a small handful who can handle both. If there's a local organization, the next time you have something you actually want to go to, ask them to set up childcare for you please. Or if your dh can handle it, insist he stay and watch them, even if he doesn't really get the need. Some people can only do this at night after at least one bedtime, or both, and make it happen for those opportunities.

Getting out really does make a difference.
The first time, you'll probably feel like an alien, because what people are talking about has no shaychus to your life. But if you do it again, and again, you'll find that you can actually talk about what people are wearing or a teacher you remember from high school.

If none of B works for you or speaks to you, return to A. Some of us know there are situations that don't have solutions.

amother

Snow

Tue, Dec 12 2023, 2:13 pm

I have an adorable 15-year-old with autism. He is odd and destructive and occasionally violent. He goes to shul for hakafos on simchas torah. I do have one friend I could take him to. It started when a respite worker decided to take ds to her house on Shabbos afternoon, and it continued for several years even after she was married and wasn't there with us. The family was extremely welcoming and accepting, and I enjoyed taking ds there on Shabbos. All the kids were eager to watch him for a few minutes, and since there are 10 kids in the family, I got a decent break every Shabbos afternoon. (We only stopped because we moved.)
Do your kids get respite or comhab? It's not unusual to have to change your friends do to circumstances. The friends you need now are the ones who either have childproof homes or are willing to come to you instead of you going to them. If your kids have good respite workers, they may be willing to host your kids for a Shabbos afternoon or go with you to a friend's house and keep your kids from destroying everything.
As far as attitude goes, you can't control your circumstances, but you can control your reactions. In almost every situation, you can either laugh or cry. I usually choose to laugh at my son's behaviors as long as he is not physically hurting someone. For example, when your kid is on top of the fridge, you can either yell at him to come down (probably won't help but could release tension) or you could take pictures and make up cute captions. When you need to tell your kid to stop doing something completely unacceptable and yelling doesn't help, sing about it. I have a ridiculous amount of wacky songs I sing for every behavior since that is what ds responds to.
I tell myself all the time that Hashem doesn't make mistakes; therefore, nothing is wrong with ds. If I'm looking at him and seeing something wrong, maybe I'm actually looking in the mirror since ds is perfect the way Hashem made him. It's just the rest of us who need to adapt and learn to accept those who are different.
Most important is to relax. Once I accept that ds is perfect how he is, I let the school deal with the world of therapy, and I just enjoy my time with him outside of school hours. We have many relaxing Sundays where we split our time between listening to music, going to the park, and doing grocery shopping. I don't waste energy thinking about how others with react to ds's constant high-pitched noises. He is who he is, and if other people don't like it, that's their problem. Just like we neurotypicals are allowed to express ourselves by talking, ds is allowed to express himself with whatever sounds he feels are needed for the occasion. As long as I don't let others stress me out, I find my time with ds to be enjoyable, relaxing, and entertaining.

mandr

Tue, Dec 12 2023, 2:18 pm

It sounds so hard. I don't have anything to add except that maybe you should try your friends and you may be pleasantly surprised. I have a friend who has 2 children with pretty severe behavioral and social issues and she was literally petrified to take them anywhere. She felt so trapped, especially on a Shabbos afternoon.

I told her to please come with her kids for just 15 minutes. Her younger kid was quiet and just played alone (not with my kids), but her older one was complaining the entire time that he wants to go home. She stuck it out for the 15 minutes, gradually increasing it a few minutes each time she came and at the end after a few weeks it was Yom Tov and she was able to come for a complete meal with them.

You may find they actually behave better out of the house. I don't know where you live but if you're in the Monsey area feel free to PM me.

amother

PlumPink

Tue, Dec 12 2023, 6:21 pm

I have a special child and I’ve been through lots of emotions over the years. Grief, hurt, anger, loneliness, wanting to give up, suicidal, you name it.

Three things really helped me out of those mindsets:

1. Support group -Find your people! Look for a Facebook group that matches what you are going through with your child. It makes a world of a difference to read posts from everyone who have the same struggles.

2. Supporting others -when I found moms who got the same diagnosis as my child and I was able to help them out just a little bit, it really affected me.

3. Appreciating myself -this might sound self centered but when I would think about how awesome I must be that I was thrown this huge challenge as my child and I push through the waters to do what’s best for them, to give them the best in life, to help them feel as comfortable as possible in the world around them, I can pay myself on the back and say I’m an awesome mom and an amazing person. I don’t verbalize this to anyone except my dh so he can motivate me too.

In truth, I have become a better person and mother but it is a painful, lonely journey.

OP you are a special woman. Just because you have two special children and you care. And you do whatever it takes to give them the best in life. That is huge and no one can ever take that away from you. Now go and do all those self care tips because you deserve it.

TwinsMommy

Tue, Dec 12 2023, 9:50 pm

Did I write this post????? We're down to TWO families in our community who really GET our kids and WELCOME them into their homes. So if we're not invited to one of those families for lunch (we NEVER go out for dinner even when Shabbos is early--- my daughter ALWAYS goes to bed before Shabbos starts--- even going to bed at 4:30 some Fridays--- she's NUTS!, we're at home all Shabbos. Well my son and I are. My daughter is high functioning enough to go volunteer at Bnos or go to a friend's home but if my son is home, I'm pretty much home too because anything can and will set him off. I do have a friend who comes to visit me every Shabbos and I have a Partner in Torah and skype and in person support groups during the week.

Instead of feeling lonely, I use Shabbos to nap when I can and catch up on relaxation.

amother

Begonia

Wed, Dec 13 2023, 9:33 am

Hugs to OP and everyone else dealing with this.

I have a SN son who is nearing adulthood and it terrifies me. When he was younger I was optimistic that with all the right therapies things would somehow snap into place and he'd be more intellectually and socially normal by now. But no. And I worry all the time about his future and mourn the expectations of the life I dreamed for him.

Ironically, although DS doesn't have any behaviors that make us social outcasts, I've pretty much isolated myself in my sadness. We socialize a bit but I don't really have close friends anymore. I felt so resentful of all my friends with easy kids who couldn't begin to understand me and I basically burnt a lot of bridges.