Parents and kids...if you had your time over....

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Benjamin2006
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25 Jun 2011, 7:38 pm

What would you do differently with your AS child? What did you learn the hard way etc etc.

This is also open to those who grew up on the spectrum and can look back at what they feel they missed out on...etc etc

I think my family are facing a future with a child either on the spectrum or very close to it and whilst I know there are no magic cure I'd be interested to hear about any experiences....



purchase
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25 Jun 2011, 8:16 pm

I don't feel I missed out on anything.

I am very glad I had a "normal" upbringing and a mainstream education in public school. I'm glad my quirks were joked affectionately/exasperatedly about by my family rather than my being treated as a delicate flower.



Mama_to_Grace
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25 Jun 2011, 8:20 pm

I would not have insisted and persisted on disciplinary techniques that were useless. Forget about time outs, loss of privileges, sticker charts, etc. My daughter is just now responsive to some of these methods at 8 years old but I drove us both insane with them when she was young.

STRUCTURE, ROUTINE-imperative! Get on one early and stay on it.

I wouldn't have blindly insisted she wear socks and fought over it, or worried that she chewed holes in everything, or insisted she use a spoon long before she was ready. Basically I would have been more in tune to her schedule and not try to go by the developmental chart.

I also would have documented more. I was tired and exhausted and overwhelmed and I wish I could have chilled out a little and just been more "go with the flow" and took pictures, kept a diary, home movies, etc.

I spent too much time worried that I was a bad parent or that something was "wrong" and din't just enjoy the experience.
I wish I could get those years back.



MagicMeerkat
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25 Jun 2011, 9:15 pm

The one thing I will probably never forgive my mother for is not getting me out of the horrible public school enviroment faster. She claims she couldn't at the time but if I had a teacher who was molesting me sexualy she would have found a way to get me out. I was being molested mentaly on the daily basis. I was basicaly considered ret*d with no potential so why did they make me go to school anyway? I have PTSD and severe agorophobia from my school expirences.


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SC_2010
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25 Jun 2011, 10:20 pm

Don't worry as much.

Enjoy your child more.



squirrelflight-77
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26 Jun 2011, 10:02 am

for me it's a been a recurring issue of pushing NT techniques on a child who just isnt NT. There have been many many times throughout her life where we worked with an issue only to find it was not something she was able to control. Other than that, just accept and enjoy your child for their uniqueness and always remember that NT children are not a breeze either and they often have issues our children do not like rule breaking, lying, sneaking behind your back, bullying, etc. No child is perfect. I'm very happy that my girl is not the norm. In many many many ways she is much better. We just have our challenges too and they are different.


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Kailuamom
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27 Jun 2011, 8:48 am

I think I asked the very same question at the beginning of our journey. Here's the thing; notice how one person liked mainstream school and another will never forgive her parents fo leaving her in mainstream school? What is perfect for one person is the worst thing for another. There is no consistent "thing" that we're supposed to do.

I think the most helpful advice I was given is something to the effect of; listen for what your individual child needs. Don't listen so much to those external voices who say they know better. Even that is really hard for me. I have made big changes and try to meet my son where he is, but now he seems so much more dependent than is healthy. There is just no map for how to do this right. There is just the best we can.

I read Tracker's book, which basically told me to listen to the meltdowns, they are tellIng me something. That was infinitely helpful. My son almost never has meltdowns anymore, but is super dependent. He's 11 and needs help in the shower, and other personal care. I'm not quite sure I know how to balance his needs and move him toward independence.

Good luck!



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27 Jun 2011, 11:58 am

This echos what Kailuamom just said, but I'll say it again anyway becasue it is worth repeating -

I wish that I had learned earlier that behavior is communication.

If a child is exhibiting a behavior that is problematic, you have to figure out what they are trying to communicate to you that you are missing in order to modify the behavior. This can be quite challenging but it is the only way to really address the problem behaviors.



Janissy
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27 Jun 2011, 5:57 pm

If I could have a do-over, I would never have given my daughter an SSRI. What a horrendous mistake that turned out to be. It made her problems so much worse but not until after she was on it for about 6 months. By then, her doctor assumed that her increased problems couldn't possibly be a side effect because they didn't manifest immediately. It took over a year to undo that mistake.

But, as kaluamom said, the worst mistake for one family will turn out to be the perfect solution for another. So just because SSRI was a disaster for my daughter doesn't mean they are a disaster for everybody. That's the tricky part. You see how well thuings go for another family and think it will apply to yours too. Or you see how terribly things go for another family and avoid something helpful because you don't want that.



AnotherOne
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27 Jun 2011, 6:34 pm

giving too much time to "professionals" to try to do their protocols. we thought there is no harm but it used great amount of energy and 2 years of an important life period until we finaly realized that they have no clue and just employ protocols without thinking.
i also think my son picked up some bad habits there making the things worse.

but we learned the lesson and now we do not trust anyone until they prove they know what they are doing. still we are repairing the damage.



Annmaria
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27 Jun 2011, 6:54 pm

Nothing, its not about changing its about understanding! What is hard about that! :)


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Benjamin2006
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28 Jun 2011, 12:45 am

Thanks for the replies, they've been very helpful.I'm also about halfway through Tracker's book which has been helpful also.

I think I've already gleamed some understanding of Autism and the nature of it being a spectrum. There may be areas of communality but we are talking about individuals and I can see that the issues are both more subtle and complex than just a list of causes and effects.

I don't see the whole outline of my son in other people's experiences but there are areas that seem familair...it is very difficult to seperate his personality, spikes of willfullness and what may well be AS but I have learned I need to work on what his issues are and how to help him. If I'm learning anything is that I have issues within myself to resolve as well....I've already done some of that by deciding fighting against the uncertainty and hoping he's not is somewhat futile and dealing with the issues is the way ahead whether they encompass a label or not and making sure he and our family get the best out of our lives.



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28 Jun 2011, 4:59 pm

SC_2010 wrote:
Don't worry as much.

Enjoy your child more.


Probably this for me too.



huntedman
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28 Jun 2011, 8:55 pm

I understand that a certain amount of grief and/or fear is natural around a diagnosis. Although seeing that as a kid and starting to put together that you are the cause is incredibly confusing and isolating. Please mindful of how you view AS and that this will effect your child.

Also there is a time when you start to make observations of small body mannerisms of other people, to understand how they work, and recognize emotions in them. This is a very hard process when you do not do it naturally, but have to create a system to do it intellectually. It helps allot the more you can be honest about how you feel and why, even if you cannot answer, don't lie.

People have mentioned how painful bad sensory or social situations can be, but the world will always have things you want and rarely accommodate you. I wish I had realized earlier that wither or not other people experience pain in the same situation is irrelevant. The question is simply what you want and what are you willing to endure to get it.



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02 Jul 2011, 11:18 pm

I didn't really miss out on anything when I was growing up. Just my peers throwing the word, 'ret*d' around at each other and at kids who were obviously different.


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jojobean
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03 Jul 2011, 1:18 am

I wished my parrents understood when I was younger that if I kept doing something even when I was told not to...it wasn;t because I was disobedient.....sometimes I couldn't help it other times it was the only way I could tell them that I hurt

I wish I was homeschooled...my life would have turned out much better

special education for me was a waste of taxpayer money because I was not educated, I was warehoused.

I wished my parrents didn't fight so much and used me as a tool to punish the other parrent.

I wish my mom never remarried, her taste in men caused me alot of pain.


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