I Respect The Special Needs
There was a very good article that really articulated what it's really like being a Special Needs Parent and caring for these Children. I don't know much about Autism , Fetal Alcohol Syndrome, Downs Syndrome, or other Special Needs.
One Mother said it best...
"It was a good article right up until they started talking about ‘just’ taking time for yourself. That’s nearly impossible for most ASD Parents. Not only do you need a Babysitter with specialized training but YOUR OWN kids have to get used to them and feel safe. That requires money they don’t often have. Then there’s the fact that even loving Family members find your kids too overwhelming to deal with much of the time. Then there’s the problem that most ASD Families are scrambling to pay regular bills and pay for all the extra therapies needed just for the small chance the kids can grow up to be self sufficient and independent. There Is. No. Extra. Money.
Money goes to doctors and therapists, not Piano, Dance, Swimming, or other fun lessons. Forget about any Money for a night out or investing in your own hobby. Plus, the timing of the said therapies, schooling, etc, takes up most of every day so “JUST” taking time for yourself usually means staying up late and sacrificing more sleep.
Yeah, it was a good article up until that point".
Another Special Needs Parent commented with desperation with many comments on the Article about what time and what Money?
"My hope is fading. We did great with ABA for my soon to be 6 yo Daughter. Then School had horrid issues of aggression. It got bad so we started Meds. School only just gave her a full time Aide but they kept allowing her to act out, be aggressive and get out of class that I’m not sure they can unravel the mess. She injures staff and students, this time a boy’s Parents are concerned for her staying in the regular General Ed class if she's going to keep injuring people and causing anxiety to the other Children … I feel for them so bad and want to apologize.
Ultimately I want my daughter to get help. The Meds made her worse and we’ve been threatened with eviction if there are anymore complaints about her behaviors. We don’t have Money to move and don’t want to be in an apartment situation only to have the same threats occur. We have to run and hide with her in the car when she doesn’t calm down so she doesn’t disturb anyone. We have no place to go. My Mom is the only one that tries to give her respite so we can have time, but ever since her medication she's no longer able to help as she use to. My Daughter has been hospitalized twice in the past year. I’m terrified to bring her back if she does freak out because the ER was not friendly the second time around. The In-Patient Care doesn’t do much except change her Medications around then they want to release her after 10-14 days with just having medication adjustments a few days before releasing her.
A lot of it is Insurance not wanting to cover longer stays. She’s too aggressive for CBAT. Her Husband and herself put in for a lottery to get help but didn’t get it this year. We’re told she’s too aggressive for respite. We get DCF called on us when she freaks out cause she will throw herself down, harm people, animals, scream, swear or even harm herself so people think we’re beating her. She has even said we hurt her. I asked her why she thinks that and she said because we don’t allow her to hurt people or do dangerous things and she wants to do whatever she wants. We don’t get invited places anymore. People have threatened that since we don’t or can't discipline our child, they will. We also found she has a Microduplication and Deletion which is relative to her ASD and ADHD diagnosis. I think I’m in mourning due to all of the stress. All I want is to help my little girl. I hate feeling so scared that no matter what I do or keep trying to do for her that I’m going to lose her. It's such an awful feeling because while sending her to a place better equipped to help her could very well make a positive impact, she’s still my kid and I feel as though I should be able to be magical and do everything as her Parent. And where do I send her because Insurance, Wait Lists, lack of Providers accepting new patients is a terrible issue. It’s so conflicting. I know there needs to be balance but how? How do you get there with no Money and no Help? To be told your child is too much even from Professionals is damn hurtful".
I really don't know how these Special Needs Parents do it all, I know for a fact that I couldn't nor wouldn't. I think they're Saints and Superheroes for what they withstand, and go to great lengths to advocate for their Children. However, that's their responsibility as Parents. They signed up to be Parents to begin with...
One Mother said it best...
"It was a good article right up until they started talking about ‘just’ taking time for yourself. That’s nearly impossible for most ASD Parents. Not only do you need a Babysitter with specialized training but YOUR OWN kids have to get used to them and feel safe. That requires money they don’t often have. Then there’s the fact that even loving Family members find your kids too overwhelming to deal with much of the time. Then there’s the problem that most ASD Families are scrambling to pay regular bills and pay for all the extra therapies needed just for the small chance the kids can grow up to be self sufficient and independent. There Is. No. Extra. Money.
Money goes to doctors and therapists, not Piano, Dance, Swimming, or other fun lessons. Forget about any Money for a night out or investing in your own hobby. Plus, the timing of the said therapies, schooling, etc, takes up most of every day so “JUST” taking time for yourself usually means staying up late and sacrificing more sleep.
Yeah, it was a good article up until that point".
Another Special Needs Parent commented with desperation with many comments on the Article about what time and what Money?
"My hope is fading. We did great with ABA for my soon to be 6 yo Daughter. Then School had horrid issues of aggression. It got bad so we started Meds. School only just gave her a full time Aide but they kept allowing her to act out, be aggressive and get out of class that I’m not sure they can unravel the mess. She injures staff and students, this time a boy’s Parents are concerned for her staying in the regular General Ed class if she's going to keep injuring people and causing anxiety to the other Children … I feel for them so bad and want to apologize.
Ultimately I want my daughter to get help. The Meds made her worse and we’ve been threatened with eviction if there are anymore complaints about her behaviors. We don’t have Money to move and don’t want to be in an apartment situation only to have the same threats occur. We have to run and hide with her in the car when she doesn’t calm down so she doesn’t disturb anyone. We have no place to go. My Mom is the only one that tries to give her respite so we can have time, but ever since her medication she's no longer able to help as she use to. My Daughter has been hospitalized twice in the past year. I’m terrified to bring her back if she does freak out because the ER was not friendly the second time around. The In-Patient Care doesn’t do much except change her Medications around then they want to release her after 10-14 days with just having medication adjustments a few days before releasing her.
A lot of it is Insurance not wanting to cover longer stays. She’s too aggressive for CBAT. Her Husband and herself put in for a lottery to get help but didn’t get it this year. We’re told she’s too aggressive for respite. We get DCF called on us when she freaks out cause she will throw herself down, harm people, animals, scream, swear or even harm herself so people think we’re beating her. She has even said we hurt her. I asked her why she thinks that and she said because we don’t allow her to hurt people or do dangerous things and she wants to do whatever she wants. We don’t get invited places anymore. People have threatened that since we don’t or can't discipline our child, they will. We also found she has a Microduplication and Deletion which is relative to her ASD and ADHD diagnosis. I think I’m in mourning due to all of the stress. All I want is to help my little girl. I hate feeling so scared that no matter what I do or keep trying to do for her that I’m going to lose her. It's such an awful feeling because while sending her to a place better equipped to help her could very well make a positive impact, she’s still my kid and I feel as though I should be able to be magical and do everything as her Parent. And where do I send her because Insurance, Wait Lists, lack of Providers accepting new patients is a terrible issue. It’s so conflicting. I know there needs to be balance but how? How do you get there with no Money and no Help? To be told your child is too much even from Professionals is damn hurtful".
I really don't know how these Special Needs Parents do it all, I know for a fact that I couldn't nor wouldn't. I think they're Saints and Superheroes for what they withstand, and go to great lengths to advocate for their Children. However, that's their responsibility as Parents. They signed up to be Parents to begin with...
