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

Still so sad...Please moms help me and tell me your stories and advice

Hello fellow mothers...I was wondering how did everyone deal with the saddness of being a mom of a child with autism?  It has been about six and a half years for my FIRST diagnosis, with my son who is very, very affected with autism.  He stims constantly and extremely walks on his tip toes all day long.  He has no friends that anyone knows of.  I get so sad its hard for me to go anywhere and I think to myself 'get up and why are you crying--its been over six years so get used to it!'  But, I tell you I am stricken with fear every single day about my own death.  Not scared of the pain or anything like that but my son...his own father isn't involved hardly at all with his care.  It falls solely on me.  So, after I die that means he will be lonely and probably neglected, abused, and just left alone.  This is my greatest fear.  I am new to cafe' mom, so I hope its ok that I share this.  To be completely honest, for most of the first three years I was so broken that I was hardly sober ever.  I was still super mom, please don't think he suffered but I couldn't stand the thought that this was my fault.  I ate tuna fish (mercury), he had many immunizations, I was on Paxil the first two months of my pregnancy, etc.  I hate how people constantly stare at us so I just isolated myself for the better part of five years.  I love my son and I have never really had one myself, so I really threw myself into super mom at all times and cost.  I never babysat or been around children, as I don't have family.  When he was born, as silly as it may sound, I wouldn't even shower for days if that meant my son would be alone or suddenly stop breathing (SIDS).  So you can imagine the diagnosis of Autism and what it has done to me.  I feel like a shadow of what I once was.  I don't feel strong and I don't even know what my own interests are.  Does anyone relate?  Are there any mothers out there all alone trying hard as hell to navigate everything Autism-related?  The one thing I can say, on a positive side, is that I can see the beauty in everyday I am here with him.  Thank you for reading this and hearing my words.

by on Oct. 16, 2011 at 1:07 AM
Replies (41-50):
LoloFaerie
by on Oct. 17, 2011 at 2:52 PM
1 mom liked this
I read your post and my heart sunk:/ I am only 6 months in but the 1st 3 I was so depressed. I understand self- medicating to deal and don't judge you what so ever. Babygirl, you are stressing about things out of your control, the future will be written for you when it's ready. I often feel I have no passion for things that pertain to me. I loved music, art, poetry but it seems I just stay in this silent fog. A great motovational book that has helped me through my life(not just autism related) is " the language of letting go" my melody beattie . I would try to control everything in my life because I use to give my power away to people in the past . As women I believe a lot of us become maryters and don't know how to escape it. Well ugh! I just got myself depressed! Lol don't beat yourself up Mama, we have a new day everyday to breathe and embrace that day. Not yesterday, not tomorrow. Sending love and peaceful vibes your way;) ps I'm new too
aakeiser
by on Oct. 17, 2011 at 4:00 PM

I think we all think about what we could've done different.  My husband and I kept going over the first part of our son's life, wondering what we missed..Xavier was diganosed Oct. 25, 2010, and he was 4.  We found out when he was 3 he had spd.  We thought he might have autism.  I am sorry you have to do this alone. It's hard enough on my husband and I. 

EVeryday I try to see the good side in all this crazyness.. I can say for my son, is he has one of the biggest hearts I have seen, and he can be really funny when he wants to be.. He loves to be the clown.  Having these children in our lives, does show us there is more to life, and to stop and look at the little things that do matter. I know our days are filled with many downs, and stress.  But my hearts just melts when I see my son smile..

Eva1973
by on Oct. 17, 2011 at 4:14 PM

That's horrible!  Who molested him?  Was it somebody at the school?  That is one of the MANY reasons I will not put my son in school, fear of something like that happening.  

Quoting supermom2them:

I get sad at night. During the day Im so busy I don't have time to think about whats going to happen in the future. Then I get the kids to bed and it quiet. When I was pregnant with my son (he's 3.5) they noticed fluid around his brain. The drs. told me something would be wrong but there is no way I could terminate, thats my baby. When he was born the fluid never increased so there was no need for surgery. Thank god. At one day old he had to have his stomach pumped cuz he was so allergic to milk/formula he was a vomiting mess. Then around two months he was diagnosed with torticollis and plagiocephaly. Which is a twisted neck and flat head. He went to physical therapy 2 to 3 times a week to stretch his neck muscles, which he would scream in pain during. Plus he had to wear a reshaping helmet for the first year. I started thinking my poor little guy, whats next. Then at 2 his speach went backwords, almost to the nonverbal point. He started going to a special ed class. At 3 he was diagnosed with autism. At that point it wasn't really a shock. But he was doing so good in school I was amazed. Then last month he was molested. Now he's going back down hill. I keep asking is he ever going to get a break.  What would happen to him if something happen to me. People so easily take advantage of him. My family don't believe in autism, they think he just needs to be spanked. It's not easy but you can't give up. Sorry for the rambling but your not alone.


Eva1973
by on Oct. 17, 2011 at 4:26 PM

Others members have also commented on the outside posters, and I hope CafeMom will change it.  However, I DO feel that if you are going to give the parent of a child with autism advice on how to cope, you need to have been through it.  I think that's the way it is with many serious situations.  For instance, I can't tell someone diagnosed with cancer how to deal with that b/c I have never been through it.  I don't have a clue.  Also, other people might disagree, but I didn't find your response particularly supportive.  It just seemed to me you were saying for her to "snap out of it," and it's really not that easy.  

Quoting serjil:

My apologies, but I don't think a person has to have an autistic child to know anything about autism. I do watch the news, I do read articles, and I am very interested to know why so many more kids have autism these days than in past generations. I also don't think a person has to have walked in another person's shoes, or have experienced the same issues to give emotional or physical support of someone who is dealing with any problem.

Also because of this new cafemom home page, I didn't realize I was responding in a group I am not a member of. If it is a problem then maybe you should send a message to the people who started this group and make it so only members can respond. Not saying this with anger or resentment.   

Quoting Eva1973:

I must say that I do not love it when persons who are NOT members of this group respond to posts.  Having a child with autism is not something you can understand unless you've been through it.  

Quoting serjil:

I'm sorry that I can't relate to you, but stop blaming yourself. It's already been proven that vaccinations don't cause autism, and I doubt eating tuna had anything to do with it. I ate tuna fish sandwiches all the time when I was pregnant, and my son is anything but autistic. There are so many other environmental factors that could cause autism these days that we didn't have years ago, and you can't control them. What you need to do is take life by the horns and deal with what you got handed to you. You can drown in your sorrow or build a cruise ship and float over your problems in style. It's your choice. You need to be there one hundred percent for your son, or he will suffer for it too. Good luck to you. 




supermom2them
by on Oct. 17, 2011 at 5:14 PM

It was on the way home from school. The whole situation is horrible but what tops it off. Charges can't be pressed untill my son actually talks and tells the cops what happen. He's frickin autistic, he don't know you, he's not going to sit with a bunch of strangers and say oh yeah this is what happen. They all know it happen but they dont give a crap. This guy is even still around other kids!

Quoting Eva1973:

That's horrible!  Who molested him?  Was it somebody at the school?  That is one of the MANY reasons I will not put my son in school, fear of something like that happening.  

Quoting supermom2them:

I get sad at night. During the day Im so busy I don't have time to think about whats going to happen in the future. Then I get the kids to bed and it quiet. When I was pregnant with my son (he's 3.5) they noticed fluid around his brain. The drs. told me something would be wrong but there is no way I could terminate, thats my baby. When he was born the fluid never increased so there was no need for surgery. Thank god. At one day old he had to have his stomach pumped cuz he was so allergic to milk/formula he was a vomiting mess. Then around two months he was diagnosed with torticollis and plagiocephaly. Which is a twisted neck and flat head. He went to physical therapy 2 to 3 times a week to stretch his neck muscles, which he would scream in pain during. Plus he had to wear a reshaping helmet for the first year. I started thinking my poor little guy, whats next. Then at 2 his speach went backwords, almost to the nonverbal point. He started going to a special ed class. At 3 he was diagnosed with autism. At that point it wasn't really a shock. But he was doing so good in school I was amazed. Then last month he was molested. Now he's going back down hill. I keep asking is he ever going to get a break.  What would happen to him if something happen to me. People so easily take advantage of him. My family don't believe in autism, they think he just needs to be spanked. It's not easy but you can't give up. Sorry for the rambling but your not alone.



Kalic0
by on Oct. 17, 2011 at 7:02 PM
1 mom liked this

First off, welcome to Cafe Mom and this group.  Second...HUGS!!!  Third..I agree with other ladies, but I will go futher.  You CAN NOT AFFORD to keep blaming yourself!  So like a jewish mother, I will say...Oi, stop it already!  And lastly, you always have a judgement free place to come for  inspiration when it all gets to be too much (here).

I think most of the other moms said it all already.  But I know how depressing it can be.  Though my son is somewhat verbal (though not yet functionally), communication is very frustrating.  His sensory issues make it impossible to take him to the grocery store and many other public places. All the care for him and his younger sister fall to me.  Some days are extremely difficult but actually I stopped blaming myself for my sons autism a while back (now I blame his father...haha...just joking). Seriously though, the blame game just spins your wheels and you need to keep moving forward...we all do.  Keep your eyes on the positive and definately look into creating a trust (even if you cannot put any money, you can designate the fund as a beneficiary for any accounts or insurance policies you have).  Also it gives you peace of mind to set up some kind of safety net for his future.

cherrie123
by on Oct. 17, 2011 at 7:55 PM
You are not at any fault,i know all this,i was told at four years old my son was autistic,i thought I couldnt breath,my life,and his was over,but these days he,and I have found a great place,and growing stronger every day,may I suggest a group called nami,they will help you navigate,and advocate,for your son,you are the best voice he has,and therpy,and medication,and lots of love,anything,and everything,is possiable,the thing is to get him all the help you can,he is locked inside his body,he needs you to fight for him,and help him,and love him,believe on yourself,you had a beautiful baby,you did nothing wrong,he is a true blessing,like you are,you have him becuse you can help him,he is in your life becuse you did things very right...
Eva1973
by on Oct. 17, 2011 at 8:04 PM

Was it a bus driver or aide? How did you find out he'd been molested?  Did other kids see?  

Quoting supermom2them:

It was on the way home from school. The whole situation is horrible but what tops it off. Charges can't be pressed untill my son actually talks and tells the cops what happen. He's frickin autistic, he don't know you, he's not going to sit with a bunch of strangers and say oh yeah this is what happen. They all know it happen but they dont give a crap. This guy is even still around other kids!

Quoting Eva1973:

That's horrible!  Who molested him?  Was it somebody at the school?  That is one of the MANY reasons I will not put my son in school, fear of something like that happening.  

Quoting supermom2them:

I get sad at night. During the day Im so busy I don't have time to think about whats going to happen in the future. Then I get the kids to bed and it quiet. When I was pregnant with my son (he's 3.5) they noticed fluid around his brain. The drs. told me something would be wrong but there is no way I could terminate, thats my baby. When he was born the fluid never increased so there was no need for surgery. Thank god. At one day old he had to have his stomach pumped cuz he was so allergic to milk/formula he was a vomiting mess. Then around two months he was diagnosed with torticollis and plagiocephaly. Which is a twisted neck and flat head. He went to physical therapy 2 to 3 times a week to stretch his neck muscles, which he would scream in pain during. Plus he had to wear a reshaping helmet for the first year. I started thinking my poor little guy, whats next. Then at 2 his speach went backwords, almost to the nonverbal point. He started going to a special ed class. At 3 he was diagnosed with autism. At that point it wasn't really a shock. But he was doing so good in school I was amazed. Then last month he was molested. Now he's going back down hill. I keep asking is he ever going to get a break.  What would happen to him if something happen to me. People so easily take advantage of him. My family don't believe in autism, they think he just needs to be spanked. It's not easy but you can't give up. Sorry for the rambling but your not alone.




supermom2them
by on Oct. 17, 2011 at 9:01 PM

The driver. There is no aide or cameras so thats where it gets tricky. He showed us what happen, things a 3.5 yr old cant make up. He went on to tell how the other kids got hurt to. One little girl told how her and him got hurt. Same story. Her parents don't believe her. My 14 yr old step daughter cant keep the same exact story for over a month. The cops, prosecutor and therapists know it happen but in order to convict him, which they want, they need my son to verbally say it. There are very few people in my town who know about autism and theres a chance he could get away with it if he don't talk. So we are on a hunt for a therapist he likes who he'll talk to and can be his voice.

Quoting Eva1973:

Was it a bus driver or aide? How did you find out he'd been molested?  Did other kids see?  

Quoting supermom2them:

It was on the way home from school. The whole situation is horrible but what tops it off. Charges can't be pressed untill my son actually talks and tells the cops what happen. He's frickin autistic, he don't know you, he's not going to sit with a bunch of strangers and say oh yeah this is what happen. They all know it happen but they dont give a crap. This guy is even still around other kids!

Quoting Eva1973:

That's horrible!  Who molested him?  Was it somebody at the school?  That is one of the MANY reasons I will not put my son in school, fear of something like that happening.  

Quoting supermom2them:

I get sad at night. During the day Im so busy I don't have time to think about whats going to happen in the future. Then I get the kids to bed and it quiet. When I was pregnant with my son (he's 3.5) they noticed fluid around his brain. The drs. told me something would be wrong but there is no way I could terminate, thats my baby. When he was born the fluid never increased so there was no need for surgery. Thank god. At one day old he had to have his stomach pumped cuz he was so allergic to milk/formula he was a vomiting mess. Then around two months he was diagnosed with torticollis and plagiocephaly. Which is a twisted neck and flat head. He went to physical therapy 2 to 3 times a week to stretch his neck muscles, which he would scream in pain during. Plus he had to wear a reshaping helmet for the first year. I started thinking my poor little guy, whats next. Then at 2 his speach went backwords, almost to the nonverbal point. He started going to a special ed class. At 3 he was diagnosed with autism. At that point it wasn't really a shock. But he was doing so good in school I was amazed. Then last month he was molested. Now he's going back down hill. I keep asking is he ever going to get a break.  What would happen to him if something happen to me. People so easily take advantage of him. My family don't believe in autism, they think he just needs to be spanked. It's not easy but you can't give up. Sorry for the rambling but your not alone.





Eva1973
by on Oct. 17, 2011 at 9:50 PM

That is so ridiculous that the authorities want your son to say it.  I think you should try to bring this to the attention of the national media (CNN for instance).  Also, try contacting some of the big autism groups like the Autism Society of America.  What they are doing is total BS.  I'm so sorry that happened to your little boy. That's why I'm homeschooling my son.  Seriously, everytime I hear a story like this, I know I'm doing right by keeping my son out of public school.   

Quoting supermom2them:

The driver. There is no aide or cameras so thats where it gets tricky. He showed us what happen, things a 3.5 yr old cant make up. He went on to tell how the other kids got hurt to. One little girl told how her and him got hurt. Same story. Her parents don't believe her. My 14 yr old step daughter cant keep the same exact story for over a month. The cops, prosecutor and therapists know it happen but in order to convict him, which they want, they need my son to verbally say it. There are very few people in my town who know about autism and theres a chance he could get away with it if he don't talk. So we are on a hunt for a therapist he likes who he'll talk to and can be his voice.

Quoting Eva1973:

Was it a bus driver or aide? How did you find out he'd been molested?  Did other kids see?  

Quoting supermom2them:

It was on the way home from school. The whole situation is horrible but what tops it off. Charges can't be pressed untill my son actually talks and tells the cops what happen. He's frickin autistic, he don't know you, he's not going to sit with a bunch of strangers and say oh yeah this is what happen. They all know it happen but they dont give a crap. This guy is even still around other kids!

Quoting Eva1973:

That's horrible!  Who molested him?  Was it somebody at the school?  That is one of the MANY reasons I will not put my son in school, fear of something like that happening.  

Quoting supermom2them:

I get sad at night. During the day Im so busy I don't have time to think about whats going to happen in the future. Then I get the kids to bed and it quiet. When I was pregnant with my son (he's 3.5) they noticed fluid around his brain. The drs. told me something would be wrong but there is no way I could terminate, thats my baby. When he was born the fluid never increased so there was no need for surgery. Thank god. At one day old he had to have his stomach pumped cuz he was so allergic to milk/formula he was a vomiting mess. Then around two months he was diagnosed with torticollis and plagiocephaly. Which is a twisted neck and flat head. He went to physical therapy 2 to 3 times a week to stretch his neck muscles, which he would scream in pain during. Plus he had to wear a reshaping helmet for the first year. I started thinking my poor little guy, whats next. Then at 2 his speach went backwords, almost to the nonverbal point. He started going to a special ed class. At 3 he was diagnosed with autism. At that point it wasn't really a shock. But he was doing so good in school I was amazed. Then last month he was molested. Now he's going back down hill. I keep asking is he ever going to get a break.  What would happen to him if something happen to me. People so easily take advantage of him. My family don't believe in autism, they think he just needs to be spanked. It's not easy but you can't give up. Sorry for the rambling but your not alone.






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