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So I have been up like since 4am can't sleep, tried havng a snack, tried to watch a movie finallyI decided to just get up. And I was thinking about our kids and how we cope and I fet like I just had to write this out. When I first realized my son was developmentally delayed I could deal with that I was too as a child so was my brother, when they started saying ADHD I could deal with that to so am I still am. With these issues you can move past them and still go to college and be successful. When they started saying autism I was like no at first then I started questioning it and realized it fit. I was more devestated. They ask you all these questions about their health and your pregnancy like it's your fault nope I did everything right and in fact he was overdue. Realizing my son would struggle like I have and realizing he would have more struggles was hard because all I ever wanted was for him not to have to struggle as much and more as myself. Accepting this is hard it feels hopeless at times you feel helpless at times. But accepting it and having a name gives you a way to deal with it. It gives you tools. People will label them developmentally delayed and ignore the ASD aspects of what's going on which is frustrating they don't want to "label" them and just want to see how it developes and retest them later like it's just going to go away, which it may or most likely not and if that'sthe case we need to deal with it and know how to deal with it. I had a friend of mine kinda scold me saying don't label your child. I don't feel like I am labeling it bu giving it a name. It helps me I don't refer to Russell as a autistic child to people I met, I will say he he's on disability, I will say he's ADHD which is more acceptable to say in society than autism which is really weird I think. I will say he's different and he is. It gives a name to the struggles Igo through at night, it gives a name to the hurt I feel for him in his isolation. It has affected my son to the point his own cousin don't want to play with him over this summer, he can't go to our community YMCA here at my apartment, he can't go to a daycare. He's delayed, more agressive and very active. He's cousins don't want him to go over to his great grandma's house this really hurt, we are suppose to be a family, so I talked to her an this year their are going to be consequences he hurts he has to go home it's just not going to be allowed and I am only a block away, I am hoping since he is doing well n his new medication he will do better. But without medication is heany less autistic I ask? Is he anyless disabled? I have had one friend laugh at me when I told her my son was recieving SSI for his issues. Is autism not a disability? I think it is when it affects every social interaction he  has and his learning abilities. When I can't sleep at night because he's up and I can't get him to bed, when I have bruises and marks from him hurting me and telling me he hates me. When I have so much anxiety I don't like anyone other than myselfand my mom and my grandma watch him without fear of what's going to happen who is he going to hurt and even though you may be watching him he can still dothings very quickly, it's like youave to have 10 sets of eyes on him. I am going to frasiers today with him so I hope it goes well. I wonder what have your experiences been?

by on May. 22, 2012 at 8:15 AM
Replies (11-14):
by on May. 22, 2012 at 5:53 PM

You can get SSI for autism too.  Many of us with kids on the spectrum receive SSI. My son does.  

by on May. 22, 2012 at 5:59 PM
Quoting momtoscott:

 Lots of us have been there, we know you feel.  From my POV, now more than 10 years into our dx, I can tell you that while it gets better, it also gets worse.  Being the mom of an ASD child is like a roller coaster ride.  Now that I don't expect to be allowed "off" of the ride, I feel more prepared for the lows.  I know that they won't last forever and that we will get through them.  (I know that about the highs, too)  Over time, as your son matures, the lows may not be as hard, the highs may be higher. 

It helps to vent here.  Therapy helps.  Sleep helps, when you can get it.  It also helps, if at all possible, to carve out a part of your life that is yours alone and doesn't involve being a mom, even if it's something you do once a week or a few minutes a day.  I think we all operate under such a high stress level that we need to manage it actively, not just wait until we are about to crack. 

This is really good reply, one which I plan on taking to heart to myself. :-)

Thank you, momtoscott. Well stated. :-)

by on May. 22, 2012 at 10:32 PM

My son was diagnosed a year ago, so this is pretty new to me too.  In a year, I can say it as as another poster said, a roller coaster.  In the beginning, I did a fair amount of self-blame and ran through all kinds of things that may have not been optimum in my mind. I cried so much early on, and my husband didn't accept this right away, so I felt pretty alone with the diagnosis.  Then I went through a period where I was in denial (still pops up now and then when he has some great days).  My son is HF, and he can seem "normal" at times, plus he has another diagnosis which can look a lot like autism. So it's easy to fall into this questioning.  At some point I have to stop myself and remind myself what his problems are, and ask are they being addressed?

I think this is a cyclical process. You have days where things are going well, you have days when you are in denial, you have days when things seem hopeless and you wonder how your child will fare in life.  There are many days when I am just overwhelmed by everything, and many days when I feel I am not doing enough. Then there are the days when things are good, and I'm just happy he's my boy--there are more of them than not at this point.  

by on May. 23, 2012 at 12:35 AM

I am sorry for you, your frame is very similar to my. At least I am not the only one that live these agonies. Don't give up...

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