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Old 09-15-2010, 11:54 AM   #2136
Kookie Creator
Join Date: Mar 2005
Location: Chelsea, MI
Posts: 357

Sheena - hang in there. Many of us are dealing with the same issues you are and truly empathize because we are there, too. We haven't taken our son out other than therapy appointments and school for over a year now. He plays outside in our yard and things like that, but we don't take him to other places. It just isn't worth it. Once we get his overwhelming sensory issues a little more under control and more emotional regulation, then we'll try. It's not fair to anyone, really, to do any different.

My son just turned 3 - is pre-verbal, still uses tantruming and hand-banging as a means of communication, and would rather eat plastic than food . . . I DO know how you feel. There are still some very dark times, but keep searching and reaching for something better. It is difficult, and you will feel like you are alone, but know that you truly are not. TRY TO FIND THE MOST JOY in whatever situation you find yourself in. That can be very, very difficult at times, but it's good advice when you find yourself "on the edge". For the longest time I would hate it when people would say that I'm my son's mommy for a reason. I hated it because I didn't want my son to have autism. But I'm slowly realizing that it really is truth - I am his mom for a reason - and he has as much to teach me and the world as I do to teach him.

I've yet to purchase one yet, buy my cousin purchased a shirt for her autistic son when he was young that read something like, "I'm not naughty, I have autism." And "I have autism, what's your excuse?" And "Your staring hurts worse than my autism". And "I have autism, be nice to my mom." If you find that you must travel a lot with your son, maybe a shirt like this could help. Whenever I do have my son out in public and he's acting poorly, I always feel like I have to explain his behavior. With a shirt like this, hopefully it would help everyone.

One last thing - Once people know that your child has a neurological disorder, it's really up to them to CHANGE THEIR BEHAVIORS and THEIR ATTITUDES - it's not our child's responsbility to change to fit others' preconceived notions of how he/she is supposed to act. I know, I know, easier said that believed, but I truly don't think it's up to our special children to change for the sake of other people's comfortability.

Best of luck - vent here anytime. I hope you find the right mix of therapy for your son. I would also keep asking for other opinions on the medication.
Proud mom to 3 beautiful girls AND one very lucky little boy :)
abareis is offline  
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