I just want to cry

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There are many situations where I think that having AS myself is helpful in understanding and offering support to our autistic children. Sometimes though, I'll admit, it's a nightmare.

Life is constant stress when you have AS. Phones ringing, noisy stores, noisy neighbors, loud cars, thumping speakers, tactile sensitivities, social expectations. Add two autistic children to that, and it is constant overstimulation from the moment I wake up to the time they go to bed. I'm tired all the time, grumpy all the time, on the point of collapsing into a sobbing heap on the floor at the drop of a hat.

My daughter is highly intelligent and has excellent speech, but she can't follow drections unless they're VERY clear and spelled out for her. Ask her to get a pen off the counter, and about 20% of the time she can manage such a task. Mostly, it just confuses her. She's actually a pretty good kid with few behavioral problems and is doing quite well in a mainstream preschool. Her most problematic issues at home are volume, pitch, repetition and screeching. But we're working on that, and it's coming along.

Then there is my son, who just turned two and is mostly non-verbal aside from babbling and "tic words". He will walk around the house yelling YAAAK! for reasons that seem unrelated to anything. I've taught him enough sign language (he knows over 60 signs) to tell me everything from what food he wants to if he has a boo-boo somewhere, but I've learned that you still have to ask him in multiple choice fashion. He does not approach you to communicate a need, he simply cries and begins to tantrum, at which point you have to walk him through the signs (because he has no words for food, except eat). "Do you want drink? Food?" He does say "Okay", which means affirmative, when you hit on what he's looking for. Then you have to say, "Okay, do you want milk or water?" Then he will sign it. At least he can do multiple choice now. Before signing, it would be a mess of showing him different foods and having him turn his head and swat at it until you got to something he wanted.

He also has a very narrow focus: if he wants my cell phone, he WANTS my cell phone, and if you divert his focus to something else, it invariably means a screaming tantrum fit which must be carefully averted by first trying to get him to focus on something more appropriate...and that doesn't always work. And no, I'm not raising a spoiled brat. My daughter never acted like this, and we've tried raising our son the same way but it just doesn't work. He's a loveable, but very difficult child.

The little guy also feeds on our daughter's behavior. On his own, he is very quiet, calm and reserved. R is very active and boisterous, always jumping and making noises. G picks up his environment and follows. The noise level quickly rises to intolerable levels, and when R sees G joining in, she just gets louder and so goes the snowball effect. I get a small half-break when G sleeps in the late afternoon. I would love to take this time to enjoy the treadmill or getting some chores done, but I'm so mentally exhausted that I usually end up vegging out on the computer. Chaos begins again after nap, and most of nap is spent quieting R. By the time my husband comes home, I often ask him to take over. Still nothing gets done, because I'm to a point where I'm simply so overstimulated that I'm not capable of much.

And I miss my husband. We had difficulty finding a sitter we could trust before, but I know autistic kids are a challenge and I need someone I can REALLY trust. I have maybe one or two people, who are frequently unavailable. We need to leave the house to spend any time together or have a conversation. We get to do this once every FEW MONTHS. I recently attended my college graduation alone because he had to stay home with the kids. It was depressing. Not even a celebratory dinner. Nada. And when I got home and wanted to talk about it, at least, it was a typical conversation in our home. A competition over kids who think that they must talk if you're talking, so it becomes more a shouting match, trying to be heard over the rest of the noise, and less a conversation. I get to the point of "why even bother". Tell them to go play elsewhere and one bounces all around and keeps interrupting and the other breaks down sobbing because that is what he does when you redirect. So then they have to be calmed, I forget what the hell I was saying in the first place, I start over and as soon as I form a partially coherent thought...it all begins again.

When bedtime finally comes, our son sobs almost hysterically when we leave the room. Crying it out doesn't work, so we have to firmly calm him by telling him it is bedtime now. He says, "ooookay, ooookay". This usually goes on for a good 30 minutes. Then my husband hits the shower and the bed and it's lights out. Am I even married anymore?

I feel sad, alone, overwhelmed and the stress is beginning to take a toll on me both mentally and physically. I've also been taking college classes through this, and my next degree program begins in the fall. I know I'm a parent, and as such I have to sacrifice a lot of "freedoms" and that, but this can't be healthy, having nothing for myself and nothing as a couple except constant stress and some time to ourselves two or three times per YEAR. I frankly don't know how relationships survive autistic children. Throw on top of that the fact that I already feel like my husband is distant with HIS AS.

I know this probably sounds like a selfish rant, and perhaps it is. Tonight I just feel like crying.

You are SOOOOOOOO not alone in this. For a while I thought you were describing our efforts at trying to carry on an adult conversation. Right now, DS is tube fed and is totally defensive about anyone even touching his feeding button. Even lifting up his shirt a little to make sure his tube is where it is supposed to be will send him into a screaming, crying tailspin. DD is two and into everything, trying to act all grown-up and "help" me get things done.

When my husband gets home from work, I also tend to let my husband handle them while I take a breather, even if it is to just make dinner.

All I can say is, I really feel for you. And please don't feel badly about ranting. In fact, I hope it gave you some relief! Your situation sounds completely overwhelming and hellish. And yet, I can tell you really love your kids. Here's a flower for you:

Have you tried white noise in his bedroom at bed time? Works for me, well it helps anyway.

You are not alone and you need a place to vent! I've found most people on here to be really kind. Anyway I work with disabled teenagers and at times it can get stressful. I know that I get to send them home to their parents to give myself a break. Some of these children have severe medical conditions. I have often wished that the government would work out something that parents with children with disabilities could have one day away once a week. They should be able to find kind loving people to sit with children while parents get to spend time together as a couple. If nothing else just to chat or rest. It would help the children and the parents tremendously. The government wastes so much money on stupid stuff looks like they could do something that was important for once. I'll be thinking about you and wishing things to get better.

I don't know how to express my sympathy for you.

siuan - I cannot imagine how hard this is for you...sigh. I think you stated the situation succinctly. I guess there's no 'easy way.' But...you're doing it! You are amazing - I always love reading your posts. I am not able to offer any advice, but I wish I could. Seems as if you're just W A Y overwhelmed (guess you knew that already)! For those of us who are autistic (whatever 'level') this is tough! Your children too know this, I'm sure. For me, I try to compartmentalize my schedule as best I can, like a routine.

Also, I read your post about your mother. I am heartbroken for you. I had an uncaring, hateful mother so I do know. But, you're a great mother. That's what counts. You've already surpassed her, regardless of the hurt she's inflicted.

I am not a mother. But I do know how misintepreted autism can be by outsiders. So your children will have a hard time since their caregiver/teacher, whatever, can misinterpret - sometimes harshly. Can you give them some real information (about autism) so they're not...brutal?

Anyway, you're so strong. When I get overwhelmed every aspect of my life can spiral out of control. Fast. I think this why I sometimes must keep myself grounded.

siuan - I just now posted, in General Autism Discussion, a new thread! "For all of us...guidelines." Will you look at this? I think it will really help! At least...I hope so. Good luck siuan

it is very hard being a parent....1000 times harder being a parent of a child with "special needs".....time away from your kids ( with your hubby) is perhaps what you really really need. i know from experience how difficult it is to get someone to watch the kids. but for your own sanity, please try again to see if you can find someone. huggs

Thank you everyone, I feel a little more together today.

MomofTom: the lack of conversation is the hardest. I think if I even had that, I would feel 100% better than I do. My husband and I both have AS, so having a conversation isn't easy to begin with. I miss that interaction, and mostly now I just avoid it and blog because the additional stress often proves more daunting than my patience allow for.

hartzofspace: thanks for the flower and the kind words

sands: indeed one of my biggest roadblocks to going out is finding help I can trust. I did have a great sitter two years ago, but she's in college now. I have friends who offer, but I don't know. I know how challenging they can be, I know all their sensory problems, I know their needs. I feel selfish for leaving them with someone who might not understand autism.

LabPet: I was one of those kids who was treated poorly because no one realized I had AS, so I'm poised in fighting position when it comes to my kids. If they're treated anything like I was, I'll yank them out and homeschool them faster than the admin can say boo. I'm anxious to see your thread now so I'm gonna keep this short

ster: thanks I'm going to try and see what I can do. I think I'd be a more effective mom if I had a break (and my body is beginning to rebel against my staying up until 4AM to achieve some peace and quiet).

You are doing a great job. I know it's hard, but it will be worth it in the end. Some of the blogs on here really aggravate me when they talk about autistic kids not showing caring toward others. I've worked with several and they are caring kids. I don't blame you for being afraid to leave them with people who know little about autism, especially since there is so much misinformation about it. All kids thrive in the environment like what you have them in. I wish they were more parents around like you.

Does your son have a speech therapist? My son had very few words at age 2. After a year of speech therapy (they were only 2 one hour sessions per week), he was almost where he should have been with language. He's 9 now and he is only slightly awkward with words.

I'm overwhelmed too. Some days, I don't know how I manage. I'm a single parent. I homeschool my son and I still have to work.

*hug*

Siuan,

I think you are amazing.

Rant away whenever you want!

Helen

{{{{hugs}}}} from me too.

First a {{{{{{{{{{HUGE HUG}}}}}}}}}}, and then I'd like to say that ranting is perfectly okay given what you and a number of other parents in here have to put up with!

It seems to me that it's a bit difficult to get your husband to assist you in the "fray". I have this problem that although I want to "take my fair share" of chores etc., I don't always "recognize" a responsibility. If your husband is the same "kind of aspie" as I, all he needs is a clear-cut instruction, like "You get the responsibility to take care of such-and-such. Here's a step-by-step checklist on how to get it done right."

I'm by myself--figured it would never work, the two of us arguing, and trying to raise a child (this was before he was diagnosed...maybe I had a sense of what was to come). It seems like the relatiionhip must be very strong to withstand the additional stress, coming to terms with issues, agreeing about discipline etc. Seems daunting.

Get out. Your husband is there--take advantage. You need to give yourself some time-exercisiing, a club, something.

I often wish I had some babysitters on hand--I've passed up many social affairs.

equinn