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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

So.. Where exactly is my instruction manual??

Posted by on Mar. 1, 2014 at 12:31 PM
  • 19 Replies

This is my first post, though I have been ghosting your board for a week. I'm Kelly, my ASD kiddo is Hannah. She is 5. Sorry for the length in advance. 

I always knew she was off. She was delayed in everything she has done. She walked at 18mths, didn't even crawl until she was 3. Her gait is stiff, akward. She was able to master running at 4.5. Academicly, she went into Kindergarten knowing how to write only the letter H and recognizing only two other letter. I had been working with her for years. She had been in daycare and went to PreK, and still had very limited skills. Oh.. The tantrums... The having to have things one way, the way you had to word things, the repeating, and repeating... 

She had an OT for two years who was seeing what I was. She was the one who finally connected me to the right people. The school district tested her in Pre K and found nothing wrong with her. Come to find out, they tested the wrong Hannah. There were two blond hair, blue eyed Hannah's in the Pre K class. They tested the wrong one. She lost a year of services because of that mistake. 

Last June she was diagnosed by a Neuro with ASD. Got her eval with the school dist. Started in July... They waited the ENTIRE 90 days to complete her evals. She now has an IEP. She also see's a therapist. She will be getting Intensvive in home therepy. I recorded one of her meltdowns so her therapist could see the reality rather then the one hour of good behavior they were seeing. 

She has been suspended for a day from school for hitting the teacher. She throws chairs, books, turns over drinks, food, during her meltdowns. I can not identify all of her triggers, the teachers can not as well. What works on one day, may not on th next. What calms her down once, may not next time. There was another episode at school yesterday. She again hit her teacher. I was blindsided with this when I picked her up. She was going to see her therapist, so I left to pick her up to find this out. The principal didnt call, so she wasn't suspended... Yet. At home she is sent to her room to calm down. She will destroy the room, but once she calms down, will pick it back up. Tantrums last anywhere from 10mins to an hour and can occur several times a day. 

The things she will scream out during a melt down... I will kill you, stab you shut up, leave me alone, .... I don't even know where the kill you, stab you came from. The child didnt even watch tv until she was 3. (Now she is intensly into tv) 

She can also be the most loving, sweetest and empathetic little girl. 

She has 2 younger brothers, in the house full time. Very rarely is anything directed at my 2yo... Generally her screaming at him to give back whatever he took. The baby there has been no aggression. However, a month ago she had a melt down at church for the first time ever and the teacher brought her to the nursery to calm down. No one got me... She was throwing things, and telling them she was going to kill the babies... They had never seen her in this mode. They now know to come and get me... And never bring her around other kids. She has other older siblings as well. 

It seems like things are escalating... Hence the in home intensive therapy. She is not medicated. There is no "normal" with ASD... I know that. However, is there a high chance that the violence will get worse? 

An instruction manual... Would be nice! Anyway... Hello!



by on Mar. 1, 2014 at 12:31 PM
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Replies (1-10):
SamMom912
by Gold Member on Mar. 1, 2014 at 1:39 PM
1 mom liked this
I will definitely respond later when im not mobile. :)
Momof4AEMW
by Gold Member on Mar. 1, 2014 at 1:47 PM
1 mom liked this

Welcome to the group!!  Great support here.  I too would have loved an instruction manual when diagnosis' came up, but sadly no!  Welcome! 

03071012
by Bronze Member on Mar. 1, 2014 at 2:50 PM
My oldest daughter has aspergers, just diagnosed at 9 last fall. Anyway, she was much like you describe your daughter when she was little. Her melt downs could go on for hours, and they were violent. She could destroy a room in seconds. She threw chairs in Sunday School when she was 4, once. She never lashed out verbally though. As she got older she has out grown her melt downs, thank goodness, but we had no help while we were going through it.
amonkeymom
by Amy on Mar. 1, 2014 at 4:57 PM

You're right, there is no normal and darn it, I wish there was a manual!  Unfortunately because ASD kids are so varied in intensity it wouldn't help much if there was.5

darbyakeep45
by Darby on Mar. 1, 2014 at 8:32 PM

Welcome to the group!

SamMom912
by Gold Member on Mar. 1, 2014 at 8:48 PM
1 mom liked this

I have a few "instructional manuals" that I like to recommend to other moms with kids who are struggling, If youre interested Id be happy to share. 

I do however want to point out two very important things.. 

We all act out HORRIBLY when we are pushed beyond our capabilities. Think of your reaction one time you were completely pissed.. Were you calm, rational? Or were you impulsive, out of control? Its really part of the human condition.  I dont know about you, but, there have been moments in my life when I have been OTC... When I have not had the skills to deal with the issue at hand...im not proud, but behavior and reactions, well, they are a continnum of how we look bad when we are upset.. 

Crying is over here on this side... Some when they are "done" cry... ------- over here toward the middle, you have yelling, screaming, cursing... What comes next.. A hit?kick? All the way to the other side of the continuum whre you may find murder? I dont know, I dont want to think of that...

But my point is, our ASD kids, they have dysregualtion issues.. They have yet to figured how to calm themselves down.. They are so sensitive to "things not going their way" in their black and white absoulte thinking that any digression from the expectation can set them off.. And it isnt right, but they need our help in calming down.. By us being calm, by being understnading and compassionate... They can learn compassion, understnading during times of duress. 

Its exhausting being a parent to these children... They are so easily frustrated, impulsive, poor problem solvers.. But we need to teach them kindly, compassionatley, patiently. When she choses a mean tone, remind her by saying.. "Hey, would you please try that again?" And give her a chance to correct her tone, or choice of words. Our children dont pick up on the subtle cues, they need in your face NICE correction, explainations. 

If you can lessen her stress and the demands on her, her tone may get nicer. Everything takes from our kids.. The sensory demand, the social demands, the OT, PT... Its exhausting to be them too... :( 

let me know if you want the "manuals" that have really helped me to help my son and to help me feel in control as a parent and a teacher. 

lucasmadre
by Kari on Mar. 1, 2014 at 8:57 PM
1 mom liked this

Welcome, if there was an instruction manual I would hand over all my money for one :) Welcome to the group. This is a great place to get support and advice and yes...LOVE. We may not be able to solve all your problems but it sure feels good to know there are other moms out there that know how you feel and what you are going through. My son doesn't have the rage issue but lots of moms here do deal with that so I am sure you will get great advice. Again, welcome!  XO

TheJerseyGirl
by Michele on Mar. 2, 2014 at 6:09 AM
1 mom liked this

 Welcome Kelly!  =)

My youngest, 12, is autistc and thankfully he is so well behaved! But I know with the right therapy an agressive ASD child can truly make leaps and bounds with their behavior. Unfortunately, she's missed out on a lot of therapy and at that age, it's so important!

*SamMom912* has always given amazing advice. If there was a book to be written, I told her I'd buy the first copy...lol. But wouldn't it have great had we all taken our kids home with instructions??

kellynh
by Member on Mar. 4, 2014 at 7:51 AM

I'm hoping the intensive home therapy will help. 

Quoting 03071012: My oldest daughter has aspergers, just diagnosed at 9 last fall. Anyway, she was much like you describe your daughter when she was little. Her melt downs could go on for hours, and they were violent. She could destroy a room in seconds. She threw chairs in Sunday School when she was 4, once. She never lashed out verbally though. As she got older she has out grown her melt downs, thank goodness, but we had no help while we were going through it.


kellynh
by Member on Mar. 4, 2014 at 7:53 AM

Hi Amy. I know you from SMC. :)

Quoting amonkeymom:

You're right, there is no normal and darn it, I wish there was a manual!  Unfortunately because ASD kids are so varied in intensity it wouldn't help much if there was.5


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