Autism SUCKS...and not in a good way, either!

auroraborealice said:

I have an amazing brother with autism, and another amazing brother who works with young children on the spectrum. Dated two guys with Asperger's. It's a condition that takes many, many different forms. While autism presents incredible challenges, it can also present beautiful and brilliant ways of experiencing the world. I am so grateful for the unique and incredible people in my life who are not neurotypical.

I also know the challenges of loving and living with people on the autism spectrum, and I am astounded at the strength of a parent who raises four children on her own. I am even more astounded at the strength of a parent raising four children with autism. Your courage and grace make this world a better place. I am sure your children do, too.

Please know you are appreciated, Sherilyn, and that you have the strength inside you to rise to your challenges. Your family is so fortunate to have you at the helm.

<3

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Wow! Thank you! Every day is a challenge, sometimes more so than others...it's definitely an opportunity for 'continuing education'!

Whenever I'm out and see a parent of a child who's autistic - it's so easy to pick them out in a crowd once you're around them long enough - I always say something encouraging to them, and that at least one person totally gets what they're doing and experiencing. I know that it makes all the difference to me!

Recently, a woman came up to me while I was out with my oldest son, in Wal-Mart, no less, and told me that I was doing everything right, and that she was so impressed. Turns out that she works with autistic children. I was so appreciative for what she had to say that I could have been scraped off the ceiling...fortunately, I had my son to keep me from floating away!

At least if nothing else, I know that my kids love me, no matter how horrible they think I am throughout the day. When they go up to bed every night, they know that tomorrow is a clean slate, and we start all over again.

Again, thank you!

CoercedAnon said:

sweet erika, thank you for reminding me of the "if you have met one person with autism, you have met one person with autism". it is true.
i told mine fairly young. my rule with him has always been: if he can articulate the question, he can handle the answer. my family did not agree, however.
when he went to his first assessments he wanted to know why, so i told him that his brain is wired a bit differently than others...also pointed out that a lot of his family are also wired a bit differently. said it wasn't better or worse, just different.
the only time this was an issue was during a social skills group he joined...he was the "highest functioning" on the spectrum in the class and asked me why he was there. so that led to the discussion about what a spectrum is.
this year the transition from grade 8 to high school was the smoothest transition ever. he was nervous, but he really loves knowing that he is in charge in the sense that he is responsible for passing class, or he has to attend summer school. nobody is pushing him, nobody is cajoling, and he is doing better than he has any other grade.
when he was younger, though, transitions were a whole different animal.
obviously i can't say that all asd kids will settle into themselves, but most of the aspies i have known did settle into themselves around the same age. i assume it is a physical, rather than mental or emotional, thing.
and i really hope i didn't sound like a numpty saying 'op. please find time for yourself", as it sounds like she is pretty much on her own. i just know from my experiences that 10 minutes alone, before bed, to do ANY focusing on myself was a necessity.

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Tommy is 11 and will be transitioning into 6th grade this next fall. I have been telling the district that he is not meant for mainstreaming/inclusion since the end of his first grade year, and needed to be in an approved private school. His problems aren't academic, they are behavioral to the point that he's stabbed his teacher's hand with a pencil, and is attacking the paraprofessionals and his teacher, as well as property damage in the autism support classroom. He's trashed part of the regular ed. room, and just on Thursday, hit a girl. They're saying that he needs to be in a more restrictive environment...well duh. I've only been saying that for four years. As his identical twin says, "That's CRAP!"

hope

Your children are lucky. I am a professor with cerebral palsy, with its own challenges. I struggle with some of the same issues as harshness is rehab has made change frightening. You are doing God's work. May things go easier for you.

Sherilyn66 said:

Tommy is 11 and will be transitioning into 6th grade this next fall. I have been telling the district that he is not meant for mainstreaming/inclusion since the end of his first grade year, and needed to be in an approved private school. His problems aren't academic, they are behavioral to the point that he's stabbed his teacher's hand with a pencil, and is attacking the paraprofessionals and his teacher, as well as property damage in the autism support classroom. He's trashed part of the regular ed. room, and just on Thursday, hit a girl. They're saying that he needs to be in a more restrictive environment...well duh. I've only been saying that for four years. As his identical twin says, "That's CRAP!"

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so they *are* going to move him?
it must add such another level of annoyance to be trying to get the admin to listen.

i really like what you said above about everyday being a clean slate.

i hope they move him to an environment that is suitable and helpful for him.

I'm disabled and have been since birth so I have some insight into this. What I'm going to say might not be what you want to hear but I'm not going to disrespect you by not being honest.

First of all you've had the kids. They're part of your life. You're all they have so they're the priority here. I know it doesn't always seem fair but they can't fend for themselves so you need to be their rock. You need to have their backs no matter what, period. Full stop. Though it may be hard for you it's your responsibility to do what's best for the kids. Now if your husband is not a good parent to them then you need to think long and hard and be brutally honest with yourself. Are they better off with this relationship intact or not?

At some point what's best for you and what's best for the kids is the same. Are they better off with a miserable mother who can't even cope with her situation or would some other circumstance be more beneficial? That needs to be considered too.

And the most important thing I can tell you, which I cannot emphasize enough, is that the minute you don't put them first and consider their needs above your own you've failed them. Maybe not in a huge way necessarily, but it's a failure nonetheless. Be honest with yourself. Have you failed your kids? Even in a small way? If you have you'll need to fix that situation and do what needs to be done to do so. Being a child with a disability is a hard thing. No part of it is easy, fun, or enviable. Sympathy and empathy are paramount. There are struggles they experience and more they will experience that you don't and won't know about. Don't ever presume to know what their situation is like. No matter how close you are to a disabled person you do not. I don't care how much you think you know, it's less. You always need to keep learning, keep listening, and keep doing whatever you have to do to raise your kids. They're kids. They're innocent. Their needs come first, period.

This might come off as harsh and if it does that's regrettable but it's honest. Coping is a secondary concern here. The first thing you need to do is make sure the situation is as nurturing and productive as it needs to be. This is not a small matter. These are disabled children we're talking about. I'm far less concerned with the burden on you than I am the one on the kids. Take care of that and then you can try to help yourself. That needs to be the order of your priorities.

Wow...

UrbanBohemian said:

I'm disabled and have been since birth so I have some insight into this. What I'm going to say might not be what you want to hear but I'm not going to disrespect you by not being honest.

First of all you've had the kids. They're part of your life. You're all they have so they're the priority here. I know it doesn't always seem fair but they can't fend for themselves so you need to be their rock. You need to have their backs no matter what, period. Full stop. Though it may be hard for you it's your responsibility to do what's best for the kids. Now if your husband is not a good parent to them then you need to think long and hard and be brutally honest with yourself. Are they better off with this relationship intact or not?

At some point what's best for you and what's best for the kids is the same. Are they better off with a miserable mother who can't even cope with her situation or would some other circumstance be more beneficial? That needs to be considered too.

And the most important thing I can tell you, which I cannot emphasize enough, is that the minute you don't put them first and consider their needs above your own you've failed them. Maybe not in a huge way necessarily, but it's a failure nonetheless. Be honest with yourself. Have you failed your kids? Even in a small way? If you have you'll need to fix that situation and do what needs to be done to do so. Being a child with a disability is a hard thing. No part of it is easy, fun, or enviable. Sympathy and empathy are paramount. There are struggles they experience and more they will experience that you don't and won't know about. Don't ever presume to know what their situation is like. No matter how close you are to a disabled person you do not. I don't care how much you think you know, it's less. You always need to keep learning, keep listening, and keep doing whatever you have to do to raise your kids. They're kids. They're innocent. Their needs come first, period.

This might come off as harsh and if it does that's regrettable but it's honest. Coping is a secondary concern here. The first thing you need to do is make sure the situation is as nurturing and productive as it needs to be. This is not a small matter. These are disabled children we're talking about. I'm far less concerned with the burden on you than I am the one on the kids. Take care of that and then you can try to help yourself. That needs to be the order of your priorities.

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Hello...

Wow, you most certainly do not beat around the bush, do you? It would be easy for me to react rather than respond, but I will most definitely go with the latter.

First of all, I sacrifice my needs on a daily basis. I often say that I brought these children into the world, and they are my responsibility to take care of them and their needs, and do everything that I possibly can to further their progress. I let other things slide, e.g. housework, so that I can spend time with my children. I am forever seeking answers to questions that I have. I have a friend who is autistic and I am forever tapping her brain trying to figure out what's what. I have gained more insight from her than anything or anyone else. In talking to her, she has pointed out that I am doing so much of the day to day parenting of my autistic children right. I have pushed my children to do more when they haven't necessarily wanted to...after all, they are still children, and are brilliant. They are capable of so much more than so many give them credit for. I have the utmost respect for my kidlings, love them, support them, care for them, give them all of the patience that I possibly can. They are manipulative little shits, and I call them on stuff all of the time. I am forever doing what is best for them, and they have made great strides. I could be one of those parents who simply don't give a shit about their kids and leave them to their own devices. Instead, I have and continue to devote myself to them and their success.

No, I don't have the slightest idea what it feels like to be locked away in my mind, having difficulty empathizing, communicating, processing things, and so much more. I don't pretend to. Anything else would be insulting to them. I do however look beyond their autism to who is there...who they are. Each one is remarkable, and capable of so much more than most give them credit for. I do not and will not underestimate them! Each one of my children all have an incredible sense of humor, are exceptionally loving and caring. They know when I'm having a bad day and are always there with hugs and kisses, cuddles and snuggles, which does more for me than anything else. That, to me is proof that they are doing so much better than society deems that they SHOULD be, and that credit Is due to me.

For the record, I am not a miserable mother. What I wrote was how overwhelmed I was feeling at that very moment. I would like to see someone else do what I do on a daily basis. I am not dealing with one or two autistic children, I am dealing with four, and an autistic adult. Add to it, that I too am disabled, and very few people know what I contend with within my body and mind. Hence, I have much more of an understanding of what my children go through; how difficult it is to live within what no one could possibly understand.

If you talk to other devoted parents within the autism community, you will hear the same thing over and over again. Unless you live it, you'll never understand. You, my dear, are seeing things only from the viewpoint of being disabled. You have no idea what it takes to be the caregiver of one or more children on the spectrum...absolutely none. Please don't project your anger over the inabilities of those to empathize with what you deal with on a daily basis onto me.

If I don't have resources to waste time on coping or caring for myself, then I am certain to be a failure as a mother, as a caregiver. Most of the time, I am running on fumes, am completely stressed out, and that is only making my disabilities worse. Still, I make sure my children have what they need and then some.

I have yet, until now, to even make mention of my disabilities, because I willingly take a back seat to my kids. My quandary is, if I don't start addressing my own needs as well, I wonder how much longer I'll be able to care for them, and no one, and I mean NO ONE will ever meet their needs or care for them as I do.

I can only hope that this has given you a little food for thought from a different perspective. I appreciate your honesty and bluntness, and if nothing else, it has made me think about my situation a little more differently.

Best,

Sherrie

I've learned the hard lesson that I have to take care of myself in order to care for our child to the best of my ability. This seems to hold true for all the parents of kids with special needs I've met: those who take care of their own physical and emotional needs thrive overall, while those who don't constantly struggle (and end up burning out, miserable, resentful, etc.) and ultimately are unable to give the quality of care they want and need to give. Hell, even after a couple of years of putting ALL of my energy into parenting left me a chronically tired, cranky, unhealthy person.

So while I see your points, UrbanBohemian, I also think it's important to look at it from the parent/caregiver perspective. When most of us become parents, those kids become our #1 priority...that's the mother/child bond, especially. However, thriving as a family (typical or special) is about finding the right balance between prioritizing our kids' needs AND taking care of ourselves as parents/caregivers. I totally drop my kiddo off at childcare so I can decompress with yoga/exercise, even though I could devote that time to him/his therapy/etc. I can't feel guilty about choices like that because I know that helps me be the best parent I can be.

I haven't read anything in Sherrie's posts that would make me question her priorities or parenting for a second. She seems like a good parent who's doing her best with a shitty situation all around. If anything, I'd encourage her to make sure she's finding lots of ways to rest and recharge so she can continue to care for her kids.

SweetErika said:

I've learned the hard lesson that I have to take care of myself in order to care for our child to the best of my ability. This seems to hold true for all the parents of kids with special needs I've met: those who take care of their own physical and emotional needs thrive overall, while those who don't constantly struggle (and end up burning out, miserable, resentful, etc.) and ultimately are unable to give the quality of care they want and need to give. Hell, even after a couple of years of putting ALL of my energy into parenting left me a chronically tired, cranky, unhealthy person.

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The best life advice you'll ever get on an aeroplane: "Apply your own oxygen mask first, before attending to the needs of others."