Dear people of Wrong Planet,

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I often read your experiences and it ´s obvious that all of you are the rare kind of people. Warriors of light. Since I´ve been fighting the same battle, just wanted to know, how do you manage?Do you have some help, especially with the situations when you have to do something or go somewhere, and your child has to stay at home?How do your parents react? Do they understand and help or, like mine, tell you to be better parent?
Do you feel dead tired, as me, sometimes?How do you find a moment for yourself?
Are you dissapointed?By that I don´t mean with your life or child but with reactions of others, school system? Are you afraid of the future, what will it bring for your child?Where do you find motivation and strength for the next day? I´d like to hear your opinnions.

To all, mamamoo

I'm going to run down your list one queation at a time .
1. Do I have help, at this time no but I'm thinking respite care is going to be needed soon as my husband has a very short deployment coming and 6 weeks alone with Jake <9yr nonverbal auntie > and Alex 12 yr old slightly asspie boy would be hard on superwoman much less a plain old mom like me.
2 My parents are bent on fixing Jake and finding away to make it all my husbands fault I.E the bad genes are all from him even with the pack of mentaly ill people on my side, my husbands parents are a mixed bag his Dad thinks we're just bad parents, his Mom only calls when she needs money and his step-mom is a great help and suport.
3 Sometimes I get in the shower after the kids go to school and then pass out until the bus comes , I try and make a little space for me even if it's just mental space like reading a book while the kids watch a cartoon.
4 I'm frankly pissed that almost noone but me sees what a wonder Jake is and I try not to think too much about the future at this point it's coming and god only know what it will hold we just got ot do our best in the mean time.
5 It's if I don't do it nobody will so i just pull back my shoulders and plow ahead, coffee does help

Wow all you questions are just like mine!! ! I manage by educating my self on a daily basis...everyday is a new day. My son will be 7 in Dec. my mother i think is still in denial or she just will not accept it ( i see a lot of Aspie in her and myself) This web site has helped me in so many ways and i have just became a member. Some days i just feel like throwing my hands up in defeat, but i can't i have to move forward and climb all the hurtles until i have accomplished my goal!!

First off, you have to remember that my child is quite high functioning, and we live in a community where AS is prevalent and fairly well understood. Because of that, I have an easier time of it than many here, and I know that.

1) In general, we manage one day or one week at a time. What is coming up, what needs to be done, how can we get it done. Our house is a disaster; that is the part I have no energy left for.

2) My main system for help has been my spouse. We both have missed a lot of work over the years to allow the other to do things that need to get done. Now that my AS son is 12, I can also sometimes have him go to a friend's house - we are lucky with that, he has a friend with a parent willing to do this for us. On occasion, if I know far enough in advance, I can make arrangements with my mom or older sister. Both live about an hour away, however, so there are pro's and con's to it.

3) My mom has been great. There was a time she wasn't so sure about the diagnosis, but she kept her mouth shut. Over time, she has come to understand the AS. It did help that she cared for my son one day a week when he was a baby, and right off she told me, "none of you girls were ever like this." So, while she didn't know WHAT was different, she always knew SOMETHING was. Now, my NT daughter ... my mom thinks I spoil her and let her run the show, and I guess I do, but something is going on with my daughter that I haven't figured out yet, and she is so fragile inside I'm really worried. My mom bites her tongue, but I still know what she thinks there.

4) I'm tired. But, it could be my own fault ... I don't have to take on the PTA things I do, or be a moderator here ... I have a little trouble saying "no," and I enjoy the volunteer work. It makes the schedule crazy, but keeps me interacting and learning, so I guess there is a trade off. Oh, and I also work part time. Yeah, the house NEVER gets cleaned here

5) I steal time for myself when the kids are school and there aren't any immediate, its due tomorrow, work or volunteer deadlines. When "better" wives would be taking care of the house. Like now. I consider coming on the computer like this to be "me" time. A few times a year I'll schedule a night out with my female friends, or actually get my hair cut and colored ... I find that sort of thing more difficult to get scheduled in.

6) I have mixed feelings about the school system and how the community is with my child. Over all, we've been lucky, but with the recent budget crisis here in CA I've also run smack into the wall limiting what a school can do. My son's education isn't very rich, and there are things I would like for him that I won't ask for, because I know there is no money. Every kid in our district is being short changed, and having an IEP doesn't mean we shouldn't accept our share of it. So, he gets what he needs most, but pretty much only that, and we try to make up a bit for the rest on our own. The computer situation at his school is frustrating, because we enrolled him in an academic support period specifically for him to get on the computer and clean up his alphasmart entries, a step in the writing process he desperately needs to get comfortable with. Well, the computers haven't worked all year, and I know the district is trying to fix their network, but GRRRRRRRR.

7) I find myself afraid for the future for my son in odd ways. I think he'll get a job and support himself; I'm not worried on that. I do worry if he can realize his dreams, and be HAPPY working, or if his weaknesses will get the better of him there, just as they have with my husband, and keep him from doing what he would most love doing, and just doing what he must, instead. And can my son have a healthy relationship with a woman, and meet his needs for close physical contact, or will his needs for contact always be at war with other parts of himself? Every parent worries about every child; that isn't unique. But I know that, depending on where a child is on the spectrum, you can be caught worrying if the child will have any quality of life once you are unable to provide it. I don't have that, but I know many parents here do.

8 ) I know I have it easier than many, so that helps me keep going. Every parent, every person meets challenges. All you can do is tackle them, and keep at it. Live for the little rewards you come across in a week. Focus on all the great things you have. And allow yourself to hide out and escape for a moment when you have the chance, and need to.

My kids are also very high functioning, and I have a very supportive husband, so I also feel very grateful for my situation. My answers would be as follows.

1. We manage by living pretty quietly. We don't take on a whole lot of extra obligations. We don't over-schedule ourselves. We keep to our routine, periodically restructuring it as we go to try to meet everyone's needs at each new stage. We have lots of downtime and try to do a lot of what we enjoy, and the housework seems to get pushed to the bottom of the priority list here too (glad I'm not the only one!).

2. Up until recently, we had no one. I could count the dates my DH and I had since the boys were born on one hand. Somehow we have always managed to juggle things in emergency situations etc., but it was often tricky with no help. Just this Fall we qualified for 4 hours a week of respite through a government program (Canada). We hardly know what to do with ourselves!

3.My parents are really trying to understand as best they can. My DH's parents less so, but neither set live near us, so it just doesn't effect our day to day (beyond occasionally getting annoying on the phone or at the holidays).

4. I get overwhelmed and anxious pretty easily. So yes, often dead tired.

5. I do art. I read. I spend time learning about the things that interest me. I connect with like-minded people (on the computer). These things really soothe and recharge me. I am actually pretty territorial when it comes to "my time". It's a survival tactic. I will be a crap mom if I don't retreat onto my computer, or ignore the housework in favour of my art desk. I used to feel really bad about this, but now I know it keeps me sane.

6. I guess, my expectations of other people have always been really low, so when someone behaves with responsibility or kindness, I am usually pleasantly surprised! The frustration I feel when my sons aren't getting what they need has been intense at times, but I try to just let it go (what's that old platitude about accepting what you cannot change?). We moved into this house to be in the catchment area for a great school, and that choice has paid off in many ways. So I guess, a combo of accepting the disappointments and then being proactive about what we can change.

7. Will I sound like a bad parent if I say that I try not to think about it? I am just trying to do my best now. If I take on all that anxiety for the future too, I might implode.

8.My motivation and strength comes from just feeling lucky to have kids at all (we weren't sure if we could), and I guess really believing in who my sons are as people. They are incredible human beings. I marvel at them at times. Even sometimes when I am right in the middle of trying to get them to school while one is melting down (this morning!), I will look at that kid's purple, screaming face and even then feel this rush of pride at how tenacious and brave and forceful he is!?! Because those are great qualities if he can learn to harness them in socially acceptable ways in time, and I believe he can. I have to be optimistic about my kids. Sometimes that is very, very hard...a forced, white knuckle exercise, me mechanically going through the motions of supporting, praising, being positive even when I am angry or freaked out, and can't see the good at all, and sometimes, like this morning, I am struck with how deeply glad I am to be their mom, even in the toughest moments, and that carries me through.

1. We have family that live nearby so in an emergency we have someone to watch the kids if we need them to. Apart from that it's just us. Where we go the kids follow, if I need to do something that they can't come to it has to be while my son is at school. Otherwise I will do it solo and my husband watches him or vice versa. Both of us working full time has become a thing of the past as he can't school full time and also has health issues. At the moment by DH and I are both home as DH is waiting on urgent knee surgery and can't work so it is nice to have a little extra help. I miss work though, it was nice to have the escape at times lol.

2. Our parents are supportive now but that wasn't always the case. We made a video of James explaining his Aspergers and that did help. But they are all old school and in their day these kids were just "naughty". To be honest though I don't really care what they think. My own family unit Me, Dh and the kids) are the only people who I have to make sure are happy. I'm sure some of the other school parents probably think I am a bad parent, again, I don't care. Parenting is the hardest job in the world and I would NEVER judge another parent and have no respect for those that do.


3.Tired? lol oh my god. Somedays I could just cry with tiredness. I have asthma and coeliac disease which don't make the tiredness any easier. I give all of me until 7pm then after that it is my time. The kids know this and try hard to respect it. They aren't intentionally demanding and are very considerate so I am extremely lucky. It's the constant chatter that gets to me the most I think, sometimes I just need silence but my son has a constant need for someone to be near him or for him to talk to. Lucky I love him so much I tell you lol.

4. I am sometimes dissapointed with others, but over the years we have managed to surround ourselves with a very supportive group of people who work with James. It has taken alot of time and effort to do that but was worth every single second.

5. Am I scared for his future? Yes, everyday I worry about how he will go our there in the big wide world when he grows up. But that is my motivation for getting up and continuing on. I see in my son things that other people can't see. To me he is the most special soul I have ever come across. The fact that he is my son is the greatest honour I have ever received. Together as a family, if we can help him everyday to understand this world just a little bit more, then I will be a very happy lady.

my kiddo does not have autism but we can't rule out Asperger Syndrome yet. he does have the meltdowns over changes in his expected routine, and obsessiveness, as well as sensory oversensitivity to food, textures, hyperactivity. I do find that some people are very judgemental and assume "behavioral problems" and he just needs a spanking or something like that.

As best I can, because I have no choice, and I'm probably rubbish at it too.



No. I do pretty much everything myself. My child has either gone every where with me over the years, or I haven't gone either. Even now, at 16, I wouldn't leave her home alone for more than an hour or two. I had to go away for a few days earlier this year and left her home with her stepfather. The first time ever. She was ringing me constantly, never went to school and the house looked like squatters had moved in when I got back.



They never see the problem as they let her do what she likes. This makes her worse when she comes away from them, which is why she rarely spends time alone with them. She went there once when off school because she was vomiting all the night before. I had no choice but to work. My parents allowed her to eat doughnuts all day. In the end I had to give up work to take care of her myself.



Exhausted beyond belief. I do not know what it feels like to feel good anymore.



I don't.



Constantly. It feels like nobody actually cares. They are only interested in doing the bare minimum to keep the boat from tipping over. If she goes to school every day and sits in class and doesn't disturb others, they are happy. They aren't bothered about the meltdowns school issues cause when she gets home, or the fact that she hasn't learnt a single thing, or that she has no friends or is so unhappy and stressed that she cuts herself. Disappointed is probably too soft a word to describe how I feel. It absolutely breaks my heart.



Terrified. My daughter has very unrealistic goals and she is very determined to follow them, but she doesn't have the skills necessary to keep herself safe. I'm terrified of the mess she is going to get herself into. She says she is going to the wilds of Africa to work with children there. She can't even get the bus to school and back without getting into a mess and me having to rescue her. What can I do when she is stranded in some unknown corner of Africa? Or she will get taken in by charming criminals and end up being locked up forever for carrying bags back for them.



I don't know. I try not to think about tomorrow and just deal with today. Some days I can't even face getting out of bed. Needing to pee is the only motivation to move.

Respite care is wonderful. We have the a respite worker who adores my kids and she even takes them to the park for me when I need a break. I have Asperger's (even though my psychiatrist says I fit better under the category of HF Autsim but....to me Im Autistic regardless.) so even though I understand my kids very very well.....I need my alone time too. I have three kids who are grown 22 year old son (bipolar and drug addiction), 19 year old daughter and 17 year old daughter (free range aspie) and I have my Autistic 4 year old daughter and my 7 year old Aspie son. I dont know where I would be without my understanding husband....my daughters ABA therapists, our respite worker and my sons social group and my own therapy and medication. I wished I had these services for my older kids and for myself. Maybe it was easier when I was younger, I dont know how I did it.
We are moving to France soon as my husband is French....Im hoping we get services there as well.