Looks like heading towards some diagnosis, after all...

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magz
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03 Apr 2019, 3:22 am

I talked about my older daughter with several mental health specialists and it looks like there is plenty of misconceptions about autism or AS, even among child psychology professionals.
So I decided not to pursue diagnosis for now, to avoid unnecessary labels and misfit interventions. She got some city-funded help anyway because her kintergarden psychologist thought it would help her - she was against giving any diagnoses, just the services. It helped, indeed.
I just decided to keep my eyes open.

Now as her first grade is heading towards the end, it's clear her coping capacities are exceeded. She loses her things, forgets about virtually everything (including an overdue birthday invitation I found in her backpack) and works in snail's pace. She shows enormous fatigue and falls asleep (or have shutdowns?) in classroom. It's not about her intellectual capacities, at least in Math - when we do homework, she gives correct answers quite quickly but the "okay, you know the correct answer, now write it down" part takes enormous time and effort. Yesterday we spent 4 hours and failed to rewrite three sentences to her notebook. I have no nearly enough energy to do it every day. Neither does she.

Her father panicks. He considers a possibility of leaving her in the same grade for another year a failure and shame. He even spelled it aloud: he doesn't want his children to be stupid. He yells and treatens with punishments. I oppose it, I see no good in adding fear to all the mental and emotional struggle she is going through. But I can't get the "results" he wants. She built a blanket fort (she doesn't have her own room) and refused to leave it. I let her go to sleep with her homework not done.

I let her come to my bed for hugs or even fall asleep there before I carry her to her own bed. In this evening quiet and darkness, she often opens up. She tells me about other children in her class pointing out her weaknesses - or she percieves it that way. Like children yelling "Faster, M., faster!" when she runs slower than the rest of the class. I told her it's cheering, people do it in sports and they mean the opposite of letting you down but she didn't accept my explanation.

She seems to show signs of selective mutism. After school, she often only meows and points to objects. I give a humorous explanation that she ran out of her words at school - she agrees. Sometimes she bursts in tears and can't speak - I hug her and give her a pencil and a piece of paper. It often helps, she is very clearly a visual thinker.

She loves manual work and visual arts. I signed her for "design classes" where she is making a stuffed puppy of her own design. She made an adorable wool sheep for Easter decoration. On these projects, she has no problem with focus.

I asked a psychologist working with her on social skills programme (as I said, she gets help without an official diagnosis) about her school problems and she told me to make an appointment with the psychologist working in her school to start systematic psychological care. The appointment is scheduled at May 20th - no closer date was available.

Any insight what could I do more? I myself have poor mental and physical health so I can't make up for her difficulties and poor executive functioning.


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CWard12213
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03 Apr 2019, 12:33 pm

Kind of sounds like anxiety + learning disorder/ADHD to me, potentially.



jimmy m
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03 Apr 2019, 3:08 pm

magz wrote:
Any insight what could I do more?


Teach her how to do things. You have many real life skills, pass them onto your daughter. Have your husband do the same. It can be almost anything such as tying shoes, making a scrambled egg, making a bed. She doesn't have to repeat the skill once she learned it but she should be able to complete the function to your satisfaction before you move onto the next skill. Hands-on skills are a good learning tool.

This is what we did for our daughters. Before they ever stepped into a classroom at school, they had thousands of real life skills under their belt.

The reason why this is important is because, they will be made fun of at school. It will destroy their self worth. You can make up excuses for her deficiencies but she is intelligent and will soon see through that. The skills that you teach her will be like a suite of invisible armor to protect her from verbal abuse by her peer group.

One of the skills that I taught my oldest daughter was how to change a tire on a car. She considers that to be one of the best skills she ever learned.



kraftiekortie
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09 Apr 2019, 6:46 am

An excellent skill to have when two back tires puncture in the middle of the highway :)



fez
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10 Apr 2019, 3:58 am

Hi magz. I was on here before and came back again. I will pm you my old name so you can remember me. :D

Life changed enormously for me when my daughter got her diagnosis, she became much more settled as she knew what was going on and has gone from strength to strength knowing herself and being more comfortable. I recommend a WISC assessment for processing speed and working memory. Slight differences in these scores can have a huge impact. My daughter has very high working memory and average processing speed. She is a very strong academic achiever but must be allowed to work at her own pace.

These are some things I will push for her to have: extra time in exams, a quiet room for exams (as she will pick up on other people’s anxiety and has lots of synesthesia and so finds it hard to work in stressful environments). I also let her take time off school when she gets too overwhelmed. She has lots of down days when she can do things on her own terms. If helps rather than hinders her academic achievement as she just stops functioning when she gets stretched too thin.

In terms of training skills, I agree with jimmy m. Life skills early. My daughter can do things independently that many of her peers can’t do just because she has been given the freedom and push to get on with them.


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fez
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10 Apr 2019, 3:58 am

Ps. I wish I had a parent who showed me how to change a tire.


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magz
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10 Apr 2019, 4:35 am

fez wrote:
Hi magz. I was on here before and came back again. I will pm you my old name so you can remember me. :D

Life changed enormously for me when my daughter got her diagnosis, she became much more settled as she knew what was going on and has gone from strength to strength knowing herself and being more comfortable. I recommend a WISC assessment for processing speed and working memory. Slight differences in these scores can have a huge impact. My daughter has very high working memory and average processing speed. She is a very strong academic achiever but must be allowed to work at her own pace.

These are some things I will push for her to have: extra time in exams, a quiet room for exams (as she will pick up on other people’s anxiety and has lots of synesthesia and so finds it hard to work in stressful environments). I also let her take time off school when she gets too overwhelmed. She has lots of down days when she can do things on her own terms. If helps rather than hinders her academic achievement as she just stops functioning when she gets stretched too thin.

In terms of training skills, I agree with jimmy m. Life skills early. My daughter can do things independently that many of her peers can’t do just because she has been given the freedom and push to get on with them.

Hi, of course I remember you.
Well, it looks like we have come to the point where benefits of diagnosis outweight disadvantages of a label.
If only I could manage it all... I'm freaking out on social anxiety, I get regular panic attacks, my functioning is seriously hindered. And it's not only me and her, there is her father who considers her poor academic performance a shame and who pushes her off her limits. There is her very active, brilliant NT sister who sucks up her free time, does everything quickly and effortlessly and makes a big fuss if her sister does not go to school but she does. I can't control it all, I'm too weak.
How can I teach my children life skills if I'm drowning myself?

Well, right now we have a nationwide teachers' strike and the school is closed anyway. Free days off for the kids, anxiety for the parents.


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magz
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10 Apr 2019, 7:32 am

PS - I also noticed she performs better at school if she takes a few days off for any reason. Thanks for drawing my attention to it.


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eikonabridge
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10 Apr 2019, 8:18 am

magz wrote:
... And it's not only me and her, there is her father who considers her poor academic performance a shame and who pushes her off her limits.

The first thing I tell my children's new teachers every year is: I care zero about academics. I only care about my children's creativity. I mean, your daughter is barely in her 1st grade. What does academics even mean to a child at that age?

See, my son has peculiar ways of doing math. He would get 9x6=54 as 18x3, or as 63-9. He gets 7x7=49 as 14x3+7 (where 14 comes from 7x2). Other parents would force their children to memorize the times table. I don't. I specifically told the teacher that I wanted my son to doing things his own way, even if it were much slower. I don't want him to memorize the multiplication table. Not yet.

Guess what? It paid off. I took time to understand my son. I asked him how he did 14+14+14. He mumbled as if counting, and got the correct answer 42. I repeated with 15+15+15 and 16+16+16, and each time he mumbled for a few seconds and got the correct answer. Nothing impressive, right? So I asked casually, at the end, whether he saw color in his answer. I have asked my son many times before whether he saw colors in numbers or letters, and he always said no, so I did not expect a different response. Surprisingly, he said yes, his answer was in green. That caught my attention. Then I asked: so when you were counting, the numbers showed up in green? He said, no, the numbers he counted were in yellow, only the final answer was in green. I was starting to think that my son could be synesthetic, after all. He then shocked me with this additional comment: "And all the other numbers are in red." My jaw just dropped. When he did addition in his mind, he not only saw the numbers he counted, he saw nearby numbers as well, as if he saw a numerical grid with all the integer numbers. I started to have fun and tried different addition problems, e.g. 21+23+25, and asked him about the colors of random numbers in the neighborhood of 50 to 70, and he got all their "colors" right. Not only that, I found out that the multiples of 10 appeared larger in size inside his mind. So, my son does have synesthesia. The technical term would be Associative Number-Form Synesthesia. Because it's not "projective synesthesia", that's why it took me until now to find out about it. I did capture a lot of real-time moments on camera. I sent the video and the graphical explanations to his teachers.

What's the point? The point is, I could have simply pushed my son to do things the way other children do. I could have pushed him to follow the standard techniques. I didn't. Instead, I spent a lot of time trying to understand him. I would have never discovered his form of synesthesia, if I just followed the school's approach. Knowing my son is synesthetic is a gigantic boost. I couldn't be more excited.

Nowadays my son does a lot of Scratch programming. I've captured the screen and sent videos to his teacher. And the teacher then would ask my son to write essays about Scratch programming. That, is modulation at work.

Many parents think that if their children is behind in kindergarten, they'll be behind for the rest of their life. Come on. These kids develop differently. Pull, don't push. The way school teaches is by pushing knowledge onto the neurotypical children. The way autistic children learn is by expanding their skills from their interests (e.g.: from Scratch programming, they can develop their writing and public presentation skills.) You expand the connections inside the brains of these children, from what they like and from what they know. And at the end of the day, they'll learn everything they need to learn in life. They just proceed in a different route. By worrying too much about academics, you can actually forget to properly develop your children. How many parents out there understand modulation? That is why their children end up underdeveloped, often stuck with sensory issues. Instead of worrying about academics, I let my son follow his interests: elevators, electronic circuits, drawing comics, reading funny books, LEGO, and now Scratch programming. But do I just let him play those things? Nope. I coordinate with school teachers, with ABA therapists, so that we can leverage his interests to expand his skills and knowledge areas. And you wonder why my children do well and are always happy?

Quote:
... How can I teach my children life skills if I'm drowning myself?

There are three ways of looking at autism, each way leads to a self-fulfilling prophecy:
(1) The medical view: autism is a mental disorder. Outcome: children end up sick.
(2) The disability view: autism needs support and accommodation from society. Outcome: children end up disabled.
(3) The "meh" view: autism is just a different way of grow up. Outcome: children end up paying taxes (hint: they work).

I spoon-fed my daughter until last year (she was 10). While to the rest of the world this seems unbelievable, since my daughter was probably at the highest-functioning end of the spectrum, I frankly didn't care an iota about other people's opinion. She is now 11 and guess what? She feeds herself. I mean, why should I worry about "executive functions" at all, when I know she'll get there one day on her own? I never looked at autism as a defect, I guess that's why I develop my children so differently from other parents.

Quote:
... Free days off for the kids, anxiety for the parents.

I hate to say this: are you sure you are not confining yourself to a narrow alley that is leading you down the path of a self-fulfilling prophecy?

The solution to all problems of autism is modulation. I've said that many times. Do you carry a smartwatch?


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magz
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10 Apr 2019, 9:07 am

Eikonabridge, I am under an impression you didn't really read my post carefully and your expiriences are quite different from mine.
Are your kids mainstreamed? I bet not...
Great that you've had power and free time to spoon feed your kid till she was 9. I don't. Luckily, I don't need to. But I have to deal with complex dynamics of the whole family where everyone expects me to be their emotional support and I'm burned out and struggling with my own mental health. Autism is not a mental illness but major depression and severe social anxiety are and this is where I am right now. This is also where I don't want my kids to end up.
Honestly, I'm glad my kids got additional free time from school, at this age they won't lose much, but my own health suffers from having to deal with them all day - especially that the NT wants more stimulation but me and the maybe-Aspie need less. Conflict. Deal with it with your batteries empty.


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fez
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10 Apr 2019, 9:44 am

magz wrote:
Eikonabridge, I am under an impression you didn't really read my post carefully and your expiriences are quite different from mine.
Are your kids mainstreamed? I bet not...
Great that you've had power and free time to spoon feed your kid till she was 9. I don't. Luckily, I don't need to. But I have to deal with complex dynamics of the whole family where everyone expects me to be their emotional support and I'm burned out and struggling with my own mental health. Autism is not a mental illness but major depression and severe social anxiety are and this is where I am right now. This is also where I don't want my kids to end up.
Honestly, I'm glad my kids got additional free time from school, at this age they won't lose much, but my own health suffers from having to deal with them all day - especially that the NT wants more stimulation but me and the maybe-Aspie need less. Conflict. Deal with it with your batteries empty.


My daughter is in a highly academic mainstream school. She is performing at top level. I give her occasional respite days off to not have to be social 24-7. This is also the reason I myself don’t work 100%. This year I have worked 50%, done another masters and been the main person in charge of the children. I could work 100% sure, but my mental health would suffer as I would struggle to be around people that much. I see autism mainly as a different and more streamlined concentration system. In an ideal world I would have my daughter attend school 3 days a week and for her to be free to learn independently the rest of the time. I can’t do this. But thankfully she has a teacher this year that fully gets how quickly she can achieve the same or more than others and understands how she needs the occasional recovery day.

...and what does a recovery day look like. No school uniform... stay in pjs, and play and create... she is drawing manga comics about Greek myths, rewriting famous books, immersing herself in her interests.... nothing could convince me she is not absolutely achieving more by having occasional days away from classroom learning...


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10 Apr 2019, 11:10 am

magz wrote:
Are your kids mainstreamed? I bet not...

You've lost your bet. What prize do I win? My children attend mainstream public schools. What makes you think they are not mainstreamed? Is it because teachers listen to me and collaborate with me? Is it because teachers get excited and go crazy about my children?

Quote:
... Luckily, I don't need to. But I have to deal with complex dynamics of the whole family where everyone expects me to be their emotional support and I'm burned out and struggling with my own mental health.

That doesn't sound very lucky. I *chose* to spoon feed my daughter. Same with multiplication table for my son: I *chose* not to ask him to memorize it. (I've only asked him to memorize 9x7=63. After I've proven my point that he indeed can memorize, I immediately stopped. I don't want to interfere with his creativity. I am very careful in guarding my children's creativity. Same with chromatic solfège. After my daughter showed talent in absolute musical scale, I immediately stopped teaching her relative scales.) The other day my daughter screamed in public in a park (due to watching a shouting match between a pro-gay-rights person and a homophobic fundamental Christian). I gave her congratulations and told her: "Good practice!" My way of raising kids may seem bizarre to other people. Hey, but I have two smart and happy kids that get everyone around them excited. Yeah yeah yeah, people all try to tell me how I should raise my kids, but I take a look at them and at their own kids, and ... well, there you go.

Have you ever paused to think that we approach and solve problems very differently, and that is the reason why our families have different outcomes?

Anyway, good luck. My children are my priority. Every day they bring new surprises to me. I can't be happier. Paul Simon said it all: "People talking without speaking... people hearing without listening." It is what it is.


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10 Apr 2019, 11:12 am

Hi Fez! That off day sounds wonderful! I think people on the spectrum benefit immensely when given "alone time" to do stuff. I'm going home at lunch to work on my garden and won't be back at work until Friday. :D



magz
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10 Apr 2019, 11:22 am

eikonabridge wrote:
magz wrote:
Are your kids mainstreamed? I bet not...

You've lost your bet. What prize do I win? My children attend mainstream public schools. What makes you think they are not mainstreamed? Is it because teachers listen to me and collaborate with me? Is it because teachers get excited and go crazy about my children?
Congratulations, you win a toaster!
It's because I remember you mentioning ABA specialists (of course you were smarter than them). That means your kids got their diagnoses long ago.

eikonabridge wrote:
Quote:
... Luckily, I don't need to. But I have to deal with complex dynamics of the whole family where everyone expects me to be their emotional support and I'm burned out and struggling with my own mental health.

That doesn't sound very lucky. I *chose* to spoon feed my daughter. Same with multiplication table for my son: I *chose* not to ask him to memorize it. (I've only asked him to memorize 9x7=63. After I've proven my point that he indeed can memorize, I immediately stopped. I don't want to interfere with his creativity. I am very careful in guarding my children's creativity. Same with chromatic solfège. After my daughter showed talent in absolute musical scale, I immediately stopped teaching her relative scales.) The other day my daughter screamed in public in a park (due to watching a shouting match between a pro-gay-rights person and a homophobic fundamental Christian). I gave her congratulations and told her: "Good practice!" My way of raising kids may seem bizarre to other people. Hey, but I have two smart and happy kids that get everyone around them excited. Yeah yeah yeah, people all try to tell me how I should raise my kids, but I take a look at them and at their own kids, and ... well, there you go.

Have you ever paused to think that we approach and solve problems very differently, and that is the reason why our families have different outcomes?

Anyway, good luck. My children are my priority. Every day they bring new surprises to me. I can't be happier. Paul Simon said it all: "People talking without speaking... people hearing without listening." It is what it is.
Great. I only hope you won't be like my parents who believed they found the ultimate solutions to all problems in life.


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fez
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10 Apr 2019, 6:14 pm

BTDT wrote:
Hi Fez! That off day sounds wonderful! I think people on the spectrum benefit immensely when given "alone time" to do stuff. I'm going home at lunch to work on my garden and won't be back at work until Friday. :D


^^How heavenly does that sound. :D

Well, in my daughter’s last school before we got her diagnosed I was constantly in trouble for these absences. Now I have an amazing teacher who will even help me plan them and suggest times when she won’t miss much and he says she catches up so quickly it isn’t a problem. It makes all the difference to me and her.

Interesting thing is that as term ends the timetable often changes. Teachers give children ‘ treats’ to watch seasonal movies, to have more unstructured play. For her, as it would be for me, this is not a treat. We recharge by being alone, reading, creating being independent. Not by social time and being in unstructured social situations. Thankfully school now get that!


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