Parents on the spectrum

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Sorry, take 2!

It sounds like you have got a lot on your plate, sounds very very tough.

Obviously all cases are so different, it's hard to know what would help. Only I'll tell about my recent experience with my Aspergers son as I was at my wit's end..

I took my boy out of school following bullying and things that weren't even being recognised by the school, let alone dealt with.. The first school experience was nursery at 3, till then he'd been happy and fine at home, though sure needing a lot of attention and physical contact, and sleeping very little though he did not cry as I was always there for him. However, he went downhill very fast after starting school. I finally convinced my husband to let me take him out after several months.

He's now 7. About 6 months ago, he started coming out with memories from school, from when he was 3! There is no question they were real, and unprompted by me. What he remembered was really traumatic. But after this, there was silence on this for months. Only every night, after being fine and happy all day, he'd snuggle next to me and then suddenly sit bolt upright and begin to pound the pillows and his teddy, growling and grinding his teeth! This went on .. up to an hour, every night for about 3 months, during which I just tried to confort him, lay there saying 'I'm here when you need me' until he'd collapse in my arms, finally exhausted.

2 weeks ago, this happened only I knew his sister was awake in the other bed, and
i didn't want her to be frightened, so I got him to leave the bedroom and we went in the living room. I was so tired, I was saying stupid things like 'why, why, are you so angry?? can't you tell me??'. I knew he couldn't tell me, that it was not in his capacity, that he didn't know why, much less articulate it.

Finally, when his rage was a bit less, I said 'could it possibly be, that when you were only little, and you had to go to the nursery school, it was such a terrible experience you went through, and you can't even really remember ehat happened, and certainly you were too young to understand... that you still feel really hurt inside?', and he just totally attacked me, full on, something that never happened before. It was an immediate reaction to what I said. He kicked and bit, everything.. I did get a little hurt but he's only 7, anyway he said 'I HATE you, I wish you were DEAD'. I guess I struck a chord, and I'm the loving mother who made him go even while I knew he was being hurt, of course he's angry! As well as being deeply, deeply hurt. I said to him 'is there any other mummy you would rather have, who would maybe be better than me?', i said this quite neutrally as I was actually really curious as well as suffering for him. He thought for a bit and then said almost to himself, 'no. There isn't another mummy who would be better'. It seems to me that when he's not blaming me, he blames himself, which is far worse.

Then I said 'Can I tell you about the people who've seen that you are a special person, and recognised your qualities, your talents?'. When he didn't answer I said 'if you want me to stop, just say stop.. ' and i began to tell him about the people who truly think he's special, I mean not his dad or his granny, but random people of our friends who really connected with him, thought he was interesting and special, who he knows it's true they think highly of him. He slowly came nearer to me along the sofa, and ended up in a whole-body hug- his speciality.. then we went to bed where I read him his comics til midnight and he finally fell asleep peacefully.

Since then the nightly rages have disappeared, completely. Seriously, i can hardly believe it myself, but it seems that anger HAD to come out, and be recognised and aceepted. otherwise it goes in, and the child thinks it's part of himself when actually it was something that happened to him.

So, general things I think I learnt from this..
-anger is ALWAYS coming from pain and hurt,
-there's always a legitimate cause of it, a real cause. Finding out what it is must be the priority, NOT making the behaviour stop (for a child to keep it inside, and feel that expression of feelings is unacceptable, that could really lead to bad places)

Having said all this, goodness knows what will happen next, life is full of surprises!!

Wow, I really do want to go back and read all of the other posts eventually, but there are a lot and it's hard to navigate them all.
I am a single mother on the spectrum. I am estranged from an abusive family and have been alienated by others from them, a particularly nasty neighbor, and my own bad and wording social skills.
My daughter in my eyes is perfect. She is 15 months old. She's my ray of sunshine, my reason to care at anymore, and maybe even a bit of an obsession.
I stay up late hours. I really shouldn't. I have to be in top condition to start a new day with her. I usually stay on developmental sites, car seat websites, baby feet health, Amazon, (trying to make the perfect Christmas list for her, carefully reading reviews, making sure I trust the toy company, budgeting) healthy toddler meal ideas. I also watch documentaries on various stages of cognitive and emotional development.
By day I spend a lot of time cooking her meals to help develop her tastes and get her used to lots of textures, cleaning her, the floor, the chair, the cat...
We sing, we work with her puzzles, we pretend with doll, we go outside, we read (a lot. often the same book over and over. lol) I often forget to eat at least 1 mealwhich is bad as I decided to follow the world health organization's recommended breastfeeding till age two.
We take her nap together. It gives us extra bonding time and gives me a nice break in a dark room.
One thing that I hadn't done was to find a support group for parents with Aspegers. There have been times that I've wondered if I could be doing better, especially as she is now a young toddler... was I too stern, did we play enough, did I somehow damage her when she didn't want to let me go and I put her down to cook a meal while she screamed, and maybe even worse the lack of respect I get from other people, many parents.
I thought "Oh, I should look for an Aspergers parents support group! I can learn tips and probably give a few too. We can also discuss negative comments of others and maybe not feel so alone. As well as just anything genera parenting too!"
I searched and searched... What I found was discouraging.. Only children of Aspie parents stating how their childhood was ruined and they hate their Aspie parent.. a detailed article about why aspies make bad parents. It stated most are oblivious to the fact that anything is wrong with their parenting. It was grim... depressing and made me feel hopeless. Then I come here and find that while there is a space for this it's in a topic with a sticky. It doesn't really have it's own real spot. That being said it seems that for now it's the best there is. I'm glad that this sticky is here and hope to actually make some relatable mom friends.
I don't have a lot of confidence and am not so great at organizing events, but maybe I should make an actual drive there and go in group, or even a Facebook one myself? Would anyone show up to it? If so why is it so hard to find one that already exists? Clearly from seeing this sticky I can see this sort of thing must be wanted.
Sorry if this is typed weird I'm typing into a tiny square on my phone, so the light (we live in a 1 bedroom) doesn't bother the baby.
Also sorry if I seem ungrateful of the sticky. I really am glad it is here.

Catnip85, i see absolutely nothing wrong with being obsessed with your daughter!! But I would say that since I'm the same with my kids
it sounds like you have the relationship from heaven. When my older boy was born, i felt that the world had changed overnight, i hardly recognised it! and if it's comforting, this is exactly the way to give your baby the very best start in life.

It's a good rule of thumb: whatver feels good, do it! and don't do whatever doesn't feel good. Try not to let others railroad you, or take any advice that runs counter to your lovely instincts. I took people's advice and caved into expectations, even when i felt in my heart it was wrong, at a great cost.

All the best. Feel freee to PM, i love to be in touch with other parents on the spectrum, i feel we often share a lot.

For katy_rome - maybe dry shampoo for your daughter? That's all I've got. But sending hugs to you and your family!!

Mine is more complicated situation. I have four two nt, two nd and I am also high functioning, dx when that meant additional communication problem , not aspie. My lot were my world, and still are, but we have been spilt due to ss not understanding autism, and our unique circumstances. My younger two currently in interim care placement, til court decides. When they were taken I suffered an austic burn out, my brain had just had enough and shut down, seen as me not engaging so left to it. Only corrected after hospitalised, I had failed to eat or drink for two weeks, found unconscious by concerned neighbour. My solictor is defending on discrimination, but not hopeful. I have had to work out lots of solutions alone and as a family.
As a family we take sensory issues seriously, so avoid triggers for certain members
I remember the nightmare hair wash. We used dry shampoo twice a week, then once a week enforced wash, used towel for tight grip, to calm them, used a device with hole in so doesn't drip down necks, a really hated, quick wash, then towel dry, never insisted on hair dryer, as I hate them!
We planned shopping trips, to exact shops so we all knew what was expected.
Online shop as much as possible, especially groceries.
Lots of time in open spaces, to let off steam
Quiet room, to escape to
Social dates for nt children, so get space out of autism, to be them
Lots of sensory play,
Asked schools to teach social skills, unfortunately this also invovles ss.
Just accepting each other and our quirks, letting each other be ourselves, is so important.
To be fair after many changes, we finally have sw who due to court involvement, I suspect, is having to work in autism friendly way and provide, liase with other services, who refused to , before because I have communication issues, selective mutism and cluttered speech, volume control problems, too quiet, all of which are part of dx, so would not assess my needs. I have court ordered advocate as concerns that I have no way to express my view, this had also been asked for before, ss wouldn't provide.
It is lovely to be obsessed with your children but please make sure you have external links, support. That others are aware of asd, so can access aproiate services if needed. This is what I failed on, as social and communication skills are not my strong point, having nt view explained helped aswell.

Hi, guys! I have an 8-year-old son who lives with his dad and I feel bad because I let them all diagnose him and didn't interfere. I thought just preaching autism acceptance was enough, but it isn't... I realize now that people are still going to, because of his label, discriminate and stuff him into a labeled box... for example, think because he's Asperger's that he can't read people, or think because he's Asperger's that he can and should be able to do that calendar thing Rain Man can do or else they'll think he's stupid... once one PSYCH NURSE who should have known better actually asked me if I could do the calendar thing... anyway, discrimination, yeah. I really hope it doesn't happen, but I know it will. I hope I'll be there for him to fight for him and his right to be treated like an individual just as deeply and complexly thoughtful and sentient as everyone else if it happens. I pray that it doesn't. Sorry if I posted in the middle of you guys's convo but this *is* a general type thread and I had to get this out. I was diagnosed at 14. Not one good thing came of it, except joining WP and meeting someone I later had my son with.

Following up on this (a year later) I've got a number of autistic traits myself - I don't know if I could be officially described as Asperger's.

I hope it wouldn't count as publicity if I mention I wrote a book based on experiences but also a great deal of research - including a lot done on this forum actually.

It's a book with advice for parents in difficulty. Anyway the full content will shortly be available for free on the site
http://www.dos-and-donts-autism.com

I think I heard of that book, Katy!!

Now I want to read it. There's also some dos-and-donts threads on this board. Did you include the contents of those?

CharityGoodyGrace, you made my day ! !!

How? You made my night, btw, with your PM! I've had a lot of fun tonight, but you're actually interacting with me in PMs now so it's cool!

I'm wondering why three is so little information out there on parents who are on the spectrum. And or aspergers. I knew my daughter had autism her whole life. But she wasn't diagnosed until this year.she's 16. When looking at videos on high functioning autism, bumped into a video on women with Asperger's. It explained almost everything I've ever been criticized for, or found extremely challenging. So I want a support group, and literature, but it's all for neurotypical parents of children with these challenges. I need help with social skills etc. Because how can I teach my kids if I don't know these things myself!

<sarcasm>Because autism is a childhood condition and if in some rare cases one makes it to adulthood, they can't produce offspring anyway.</sarcasm>
There is generally very little help for adult autistic people. Maybe there is some support group in your area, so you could possibly meet some parents there?

How do you connect or interact with your kids? I feel like all I do is discipline and correct. I have a 4 year old that I know needs me to be his dad, but I don't know how to interact with him. I can't do small talk with adults, a kid is even tougher. My wife takes him to parks and I want so badly to go and play with him, but I don't know how. I didn't play when I was a kid, I just read books.

Is your child NT or autistic?

Without knowing either way, I am going to say go with special interests because you can't go wrong with that not matter what the kid's neurology. Interacting with kids (even NT kids) is way easier than small talk with adults.

You may have to deal with the fact that your son's interests do not align with yours and suck up having to do things you don't like or talk about things you don't like but remember the more you interact, the more of your own special interests the child will be exposed to and maybe he will pick one of those up, too.

What does your son like to do?

Also because we hide? Since the family Court system has been and still is VERY hostile to people on the spectrum keeping custody or even visitation if the other parent makes it a fight? So until the anonymity of the internet reached its current zenith we stayed the hell quiet therefore giving little data to crunch out there until the acceptance of recent years?

I have 3 children. all three on the spectrum but only two with DX. The partner also on the spectrum with mutiple affected members.

I wanted kids. I enjoy kids. Though the temperament of my first child was difficult to be flexible for sometimes.She was very hard to connect to until she was around 3-4. A standoffish extrovert, liar, manipulative, sneaky little beast >_<. Smart and cute but hard to handle. The next two were both mellow, clingy, late talkers, obedient with a lot of classical stimming behaviors. The younger is classical autism/non verbal.

The most stressful thing about my being a parent on the spectrum was my partners adding stress, tbh.

But I always liked kids since I was a kid so they are one of my "special interest"s