*§*AS-Parent Support Group*§*

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Manerg, Ive still not had the pm.


My Barry Kaufman (of sonrise) books have come and they are fab so Im full of hope

They are really like susan jeffers so I am really glad as I like her books.

Fickle as always I am happy again now , yay

Hi. I haven't been back very often in the past month or so because I'm trying to get the site up to par.. Okay.. Not par, but perfection enough for me to not worry about it. I'd love it if all of you could join the boards there as well as here. I've tried to set it up to be as user-friendly as possible. http://www.asparenting.com/ I've even set up a chat on freenode IRC. Let me know what you all think!

I'm tired and don't feel like reading the other replies right now, but I will later.

I've got two boys, ages 11 and 7. The 11 year old is the only one in our family who is diagnosed with AS, but I'm pretty sure it describes me, too. For me it's not obvious, though, because I don't shout, "buttock!" in the middle of the grocery store like he does.

There are some things about being a mom that seem to be difficult for me, but other people just breeze through.


1. Advocating for my AS son. I can express myself well in a letter, but I cannot organize my thought in an IEP meeting. Everyone just looks at me, as if they want my input, and I'll start some kind of anecote to prove a point, but not really be able to go anywhere with it. I'm crap at filling out all those forms where you have to say whether he does such-and-such a little, a lot, or not at all. I HATE those. I have a "life skills" questionnaire to fill out this weekend, and I'm get stuck on nearly every question.

2. Setting a regular schedule of meals and responsibilities. I know aspies are supposed to thrive on schedules, but in real life there is too much to organize, because no one will eat the same foods as anyone else, there isn't enough counter space in the kitchen, and, oh, I can't even explain it! I try and fail, try and fail, over and over. I can't even make a schedule, let alone keep one. (Which is why the U.S. Air Force saw fit to make me a "maintenance scheduling specialist" two and a half decades ago. How's that for military intelligence?)

3. Socializing. well, lucky for me, neither of my kids are keen on birthday parties and all the typical kid social stuff. When my oldest son was about three, I noticed that other kids his age started becoming really unpleasant. Mean, in fact. But their caregivers never seem to have a problem with it. Lately it occurs to me that perhaps what was going on was my own failure to comprehend their behavior. I'm not sure about that, though. Kids pushing each other away from the slide and saying, "You can't play here," doesn't sound like "socializing" to me, but people assure me that it is. To me it sounds like kids being jerks and their parents not intervening.

4. Teaching my AS son life skills. My NT son attempts things (with a few exceptions, and he's flirting with the spectrum anyway), but my AS son won't even attempt to learn how to cut his food with a knife, or how to hold some dental floss so that someday he can floss his teeth. I get a lecture from the dentist every flipping time we go about how I need to "make him" floss. Well, I'm realizing now that part of the problem is his unwillingness/anxiety/whatever over attempting a new skill, but another part of the problem is ME, and my inability to make that happen. He's 11 years old, and just last week, a special ed teacher taught him to tie his shoes. I've never been able to teach him that before, but she did it with no problem.

I'm sure I could think of more things, but those are a few.

I so get so much of that. The tieing laces thing is a perfect example. I've been wondering recently when exactly my 9 year old son will be able to walk the five minutes alone twice a week through our small friendly village to karate, because I still have to tie his trousers, jacket, and belt etc when he gets there, ( why can't karate clothes have buttons, or something normal ? ).

Schedules ... hopeless. We function on serious need. We eat when hungry; my son eats something in the early evening, ( as opposed to just at lunchtime ), only so that he won't get nausea/sick the next morning because of an empty tummy/faintness; he washes his feet, ( and bottom ), twice a week, for karate ( barefoot, so they have to be clean); he changes his clothes because/only when they are actually dirty; he only gets to karate because he homeschools and has to have some sort of regular social contact outside the family, by law, ... and so on. I only manage to get myself out of the house on a regular basis because I started smoking again, in June, deliberately. I only smoke outdoors, and it is the big outing of the day.

The only schedule we keep to of our own initiative is bedtime, and that's because it is serious need of mine, to switch off being a mother at a set time everyday.

Tonight was perfect example of an evening meal here. The papa gets home after 4 days on the road visiting clients and asks, what is there to eat? From where I am sitting at the computer I say, well, there's a bit of scrambled egg with ham from lunch, and a very small piece of tinned salmon in lemon sauce from yesterday, and he is fine with this; he just wants to sit in front of the TV without any hassle. I yell at son, who is reading "The Tombs of Atuan" by Ursula le Guin in his room, that he needs to eat before it's bedtime, so he turns up and asks what he can have. We still haven't got any more cornflakes in, nor rice cakes, ( my son is allergic to gluten ), and we are out of yoghurt since lunch, so what about babybel cheeses with fruit compotes, or tinned fish, or beans in tomato sauce with chopped up baby bel on it? This last suggestion is received with enthusiasm, so I get this ready, heating beans red hot to melt the cheese, and think, oh yes, the father could have some of these beans with the egg, and great, there's a little fresh chopped parsley left from lunchtime too. I actually pass the papa's food to him where he sits because I am up getting the food for my son. Watching them eat I realise that I want something too; the rest of the beans maybe, ( it was a family sized tin), but with what though? The cheese idea looked totally yummy, but I'm not eating dairy again, so ... aahh, the last two dozen corn chips in a packet carefully wrapped up in a plastic bag after first opening over a week ago. I heat and mash up the last of the beans with a half spoonful of lime pickle and some olive oil, and settle down with that, and a book, on my bed.
.

I am so pleased I got my results today and I passed my first year of my msc and I got a distinction on my residential school for my life science diploma!

I am so made up that I got a distiction for the residential school as it was so hard. It was in a hot, sealed in lab, in july and we had to wear lab coats, goggles and rubber gloves at all times. Also because of my allergies I could not eat much of the food provided, so ate only fruit for the week so my callories was only about 500 a day, so I was starving the whole time. We could not go to the shop to get other food as the lessons were 9am-9pm and the breaks (which were often missed) were only to be taken in the building.

The tutors disliked me because I asked too many questions and appeared aloof and arrogant, and the other students thought that too and couldnt understand why I was so negative and kept trying to join me in.

Also I had not done any science courses before, whilst the others were all on at least there 3rd science course. So I did not know any of the needed background info and knew too much about stuff the others did not (so annoyed them that way too).

I had to get to the course in nottingham on my own with heavey bags, going across london, which was such a challange to me. So all in all I cant belive I scored so well and over came such adversity!

I scored 61% on the msc exam (68% course work) which is great as it was so hard and the first time I had done postgraduate study. I did this whilst looking after the kids (and teaching them) full time. Also in this year I have found out about my own AS, which was hard and that my daughters autism and had to cope with visits to camhs and threats from social services and all sorts of other grief. I am so proud of myself especially as I left school at 14 with no qualifications!

horrah for me!

Congratulations, lotusblossom! That is wonderful!
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The You in education topic

Congrats on your dogged determination, lotusblossom.

In Canada people aged 60 and over can go to university tuition free.Six more years!!

It will not come soon enough!

thanks Sue and Ouinon!

Its very funny as I have already "moved the goal posts" and mentally devalued my success and unconsiously decided that it cant be very good course if I did well or they must be lowering their standards.

Why do we do that sort of thing to ourselves.

Why cant I wallow in victory, why do I always have to make my self feel bad when something has gone well.

Sucks.

Thanks again for your support ((hugs))

Many congrats, LB! I remember you having a lot of difficulties with the residential part, so it's excellent that you got a distinction for it!

I do that 'devaluing success' thing too. It makes no sense, it seems like a compulsion. You needn't be dismissing yourself, as you've done so well and have had even more to struggle with than most on the course, I bet.

If only we could dismiss and explain away our failures so easily!

Congrats lotusblossom

I cant stand anymore

social services has just phoned up to say Camhs (childrens mental health services) has reported me for child abuse and I must have a social servises inspection on wednesday.

I have not heard from camhs since september and I have not seen them since august so if I am that much of a danger why did they not report me earlier.

I am so upset about this and stressed,. I really dont need anything else to have to deal with. I just cant stand them grr. I dont know how many more struggles I can cope with. The worst thing about this is that if my ex takes me to court for custardy again he can use these reports against me. It just so sucks.

lotus, I am so so sorry you're going through this right now. How can they say you're abusing? Especially if they haven't seen you? Or is it because they haven't seen you.... I can imagine how they are there. It's horrible here too...

Very sorry to hear this has been dumped on you. As you say, if there was any evidence of anything seriously wrong back in august, surely they'd have acted then?

I'm wondering if this isn't connected with the fallout from the "Baby P" case. The services involved have been crucified by the media, probably with good cause, although I'll add I've never seen a system yet that can't be broken by a combination of individual incompetance and base human malice.

Anyway, I'm guessing a lot of people in positions of responsibility over others have got scared by what happened there and, given that perpetrators of child abuse have mental health issues (by definition), maybe if your AS is on file it's triggered them into action. It may not be anything personal. I can imagine, in the current climate, a department having a panic and going though records and re-examining cases they left before. They'll be 'label' hunting to cover their backs and Aspergers IS a label, albeit very misunderstood.

I think your right ManErg!
Definately baby P stuff!

I got a letter today implying that I was trying to avoid services, not that I had seen them for over a year and got sick of their incompetance.

Argh, it makes me so cross.

Ive printed off lots of stuff on autism and home ed for the social worker and Im getting my mum to be there too so hopefully it will be ok.

im so scared that they will use AS and the vile sputim of the cahms against me.

Yes. We have entirely different needs from NT parents, and I'm tired of NT parent pity parties.

hi everyone

the social services inspection went fine and she said I was meeting all the kids needs. She did not sound very happy with CAMHS , I am defenately going to put in a complaint.

thanks everyone for all your help and support!
love
Kathleen xx