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    Old 07-24-2006, 08:39 AM   #1
    patcher
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    Autism has me feeling emotionally drained

    Hi,
    I'm the parent of a 9 year old autistic son. He was diagnosed at age 3 and we have received very few services for him. He is non-verbal and not toilet -trained. My life is miserable. My husband thinks this is my responsibility. He doesn't say that but I do everything for my son. I took a leave from my job 2 years ago to only discover the public school system is doing nothing for my son. I filed for due process and those results were little or none. The school system and people in general care nothing about autism. My family thinks my son just can't talk. My friends think I am making things out to be harder than they are. At times, I don't want to live anymore. I think that I could just take my autistic son and disappear. But I could never do that because I have another son (age 13)who is fine and I think all children need a mother. This situation has made me realize I no longer want to be married and it has shown me that life as I use to know it is over. I am sooooo depressed,almost every day I have a different illness. I have very high anxiety and have occasional panic attacks. I recently quit smoking and it seems like I have never felt worse. I can't sleep at night and I'm very jumpy. My Doctor prescribed xanax for the anxiety to take only when needed. I want all this to stop. I cry everyday. I want so much more for my son but I also want a life for myself. I am so angry with my husband, friends, and family for not helping. Both my parents are deceased. I constantly ask, why did this happen to me. I guess it doesn't matter because it did. I just want to be happy again.

    Last edited by patcher; 07-24-2006 at 09:40 AM. Reason: changed title

     
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    Old 07-24-2006, 11:36 AM   #2
    sross24
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    Re: Autism has ruined my life

    It sounds like you are in a lonely place right now, so I'm glad you found this board. Everyone here will be a great support for you. It is very hard living life with autism. I'm the mom of 4 children, 2 children on the spectrum, ages 6 and 1. My 7 year old is also being evaluated for a spectrum disorder. I know life with a special needs child is challenging. My sister is 5 years older than me and mentally retarded. She is at the developmental stage of a 5 month old. Growing up was tough. My mom was trying to juggle taking care of me and my oldest sister as well as my special needs sister. She was changing diapers, catheterizing, and feeding her through a g-tube. It was as if my mom had a nursing degree. No one can understand how hard it really is unless you live it.

    I have to say that life is very tough with two children on the spectrum. But I'm managing to get through the days. However, I too have a history of panic attacks and anxiety. It got so bad that I could barely function. I was feeling a lot like you do now. I tried ativan to use when I needed it, but it was only a temporary fix. I tried cognitive behavioral training, but that too, was not enough. Finally, I decided to try Prozac. It is the best thing I have ever done. I no longer have panic attacks, and seem to be able to handle the day to day challenges better. At first I was nervous about taking such a medication, but my doctor explained to me that I was not crazy, I just had a little chemical imbalance that could be helped. I'm so glad I agreed to the help. My life is so much more manageable without the daily panic attacks.

    I hope some of this info is helpful to you. And please come here to vent when you need to. Everyone on these boards have been a great support for me, and I know they will do the same for you.

    -Steph

     
    Old 07-24-2006, 03:33 PM   #3
    jeffreys mom
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    Re: Autism has ruined my life

    Hi;

    When I read your post, my heart was aching for you. I understand the feelings you are having and about the daily crying but it doesn't help change anything.

    I have to say I related to a lot of what you posted about when discussing your emotions. I went through the daily crying and the illnesses which I now think were connected to being depressed about this THING I can't change.
    Fortunately I was able to find the strength to put my emotions in place as much as I possibly could. Don't get me wrong, I have good days and bad days and numb days.

    I am worried about you though. This depression you are describing sounds pretty deep and I think you should talk to your doctor about it. You also should call the Autism Society in your area and see if there is any way you could receive some Resprite Care for your son to give you a much needed and deserved break.

    The only way we mom's of autistic children don't snap is to receive some support from others. Sometimes all it takes to regroup is an afternoon away from everyone doing something just for you.

    We are all here for you. This board has been extremely helpful to me. It's comforting to be able to talk with others that UNDERSTAND what you are feeling. Please feel better and know we are here for you. God Bless

     
    Old 07-24-2006, 06:22 PM   #4
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    Re: Autism has ruined my life

    (((patcher)))

     
    Old 07-24-2006, 07:08 PM   #5
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    Re: Autism has ruined my life

    My heart goes out to you. I understand just how you feel. my son is 10 and low functioning. My daughter is 14. when I have been at my lowest she is what has keep me around. You need some support. Is there any one for you to call, not just family, maybe a local group could help.
    Even though autism seems to be talked about more lately, I still feel all alone. it always seems all the other autistic kids are higher functioning than my son.
    I wish I could offer you more advice but I can't. I feel a lot as you do. Our lives as they once were are over. I think we have to take things day by day and try to find the good in what we have. Like for example today my son was able to draw his first circle without help. To most people a ten year old drawing a circle is taken for granted. But we have work on this for a long time and it finally happened.
    I hope you are able to get past this depression. you are in my prayers.

     
    Old 07-24-2006, 08:53 PM   #6
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    Re: Autism has ruined my life

    Im so sorry you feel this way (((hugs))). I have Bipolar so I know how you feel with the xanax, panic attacks,depression,sleeping,ect. I have heard about the school systems and not helping too much. I hate it for you. I dont see why theres no help for you but im sure youve checked every angel on it. Your dh should be more supportive than he is. It takes 2 parents to raise a child esp. one with these needs. What state are you in? im wondering if I find find some info for you on steps to take to get you some more help. I have really good theripists that may be able to point you in the right direction.

    your other child needs you also so please dont give up. If you left him you would feel worse than you do now im sure.

    Are there any support groups there? You might feel better if you could talk one on one with someone whos going through what you are.

     
    Old 07-24-2006, 10:11 PM   #7
    Liz Cook
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    Re: Autism has ruined my life

    i have to tell you that you are not alone on all of that thats for sure. i am sure all of us parents can definately relate.

    i have been fortunate as far as supports go but i still have to take i nice little happy pill every day. i was perscribed it due to hormone imbalance from my last pregnancy but to tell you the truth i needed before that the xanax that you take only as needed might not be enough you might need something more regular to combat your depression because that is what all of your symptoms add up to. talk to your doctor again and let him that the xanax is not enough, let the doc know this is more that anxiety it is depression. drugs arent THE solution but they can help you get back to a place where it all can be worked on. i was and am still burnt out. but plugging along is all we can do. if your family thinks the only thing wrong with your son is that he just doesnt talk then maybe they would agree to watch him for you a bit so you can get some time off!

    with his severity (my son is nonverbal and has MR they think as well and is now potty training at 5 so i can relate to the frustration) you should more than qualify for respite services. do you have case management? i am not sure about services in your area but our son has independant case management that has set up services for him like respite and Section 24 which is programming down that is socially geared that is done at home after school and on weekends... if you had any experience with in home ABA i think it is kinda like that as far as some one comes to your house to work with you kid and you can sneak around the house and do a few things like uhm... knitting that lovely straight jacket you always wanted... and matching booties to scuffle around the house in...

    but there are ways to get around the school and a local support group can help. also there are advocacy programs that will go to school meetings with you just to be on your son's side... i am not sure if you have an advocate but they can sure put some weight behind you. case management and advocates an autie kids best friends.

    you need to find some time for you and then you need to find some time for your relationship. you cant do this alone at this point and i find that alot of moms of disabled children unconciously push their spouses out of the picture. ofcourse this leads to frustration and resentment because you want help but want your spouse to offer and he has long since learned not to bother. here is what i see happen most... you have a beautiful baby and everyone is happy and gaga over the darling dumpling and then you have all your plans for this little bundle's life and how picture perfect everything is going to be... and then of course you fall instantly in love with their cherubic little faces and pudgy little fingers and toes... and then say 4 or 6 months down the road (for us parents with severe kids) things start to get out of whack... you cant put your finger on it just yet but something is not right... and then it starts to consume you before you even have a name for it... your every waking moment and even some of your sleeping ones are spent trying to find out what is wrong... what happened to my baby... what should i do... am i just imagining all of this... maybe its just a phase... and then you wait. you try to do your best and your best is just not good enough because you dont know what you are trying to do and so for years until that diagnosis you get more frustrated more scared more worried and you can do everything for your child because you are on this adrenline high of worry and he is so small and then you start quite by accident making your spouse less and less part of whats going on. this happens all of the time and i am quite guilty of it myself but i try real hard to let my husband work with my son... i keep in mind what if something happens to me, mark needs to know how to work with isaac. but you want to protect your child and you become hyper aware of him and every sound he makes all over the house. your focus is always on him in one manner or another. this is natural. and then you start to decide that you are the only one that truly understands him and you probably do because you are so aware of him and since your husband is on the outside of that he doesnt always respond correctly and this is most often when the moms decide just to do it themselves... and they keep doing it... and the dads unless they are assertive in their desire to help let the moms do everything if only to try to keep the peace. i dont know how many times i have jumped down my husband's throat for just correcting my son when isaac is being bad just because i didnt like his tone. the thing is if you want the dad to help you have to let him. i had to learn to let mark make mistakes and how to guide him without making him feel like he was the one in ABA but mark had to learn how to work with isaac and i had to grit my teeth and let him and try not to jump in and undermine any authority mark might have gained or any bonding that may have happened as well. but especially i feel when a child is non verbal you get so aware of their needs that you practically know what they want as soon as they do and you jump and do it because you are so desperate to make anything right for them because they seem so vulnerable and fragile. you need support that is for sure but you may also need to learn to let people help. i know i had to. and it is still a work in progress.

    a year and a half after isaac was born we had a second son and he was still born. i only bring it up because something that one of the nurse who was very wise told us sticks with my husband and i still today. she told us that the loss of a child was one of those things that could make or break a marriage and she told us not to let it break ours. mark and i took it to heart and we still do but now we say autism is one of those things too. you should do what you can to reconnect with your husband you may find he has been waiting to hear from you.

    Good Luck and please let us know how things go i hope that you will find some peace soon even if it is for just a few stolen moments.

     
    Old 07-25-2006, 08:04 AM   #8
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    Re: Autism has ruined my life

    I am so sorry you feel that way. I have been very depressed myself. Not only was my son diagnosed this past November, but my husband is a recovering addict. A lot on my plate recently!!!
    I just think how lucky we are to have each other even with our flaws. It could always be worse. Keep faith in your heart and people will help if you ask.

     
    Old 07-25-2006, 08:18 AM   #9
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    Re: Autism has ruined my life

    Hey Patcher it's looks like we have more in common than I thought. I'm sorry your having such a hard time. I was very depressed and alone when I was finding my way through all of this as well. My kinda ex sounds like he could be brother's with your husband. All I can say is if you don't fight for your child and his right to have services no one else will and it's exhausting I know and it's a full time job, and sometimes you have to get down right nasty to get it done. But it takes your mind off the other stuff the depression. When you get what your child deserves from the state you'll feel much better. Get angry at the state not your son, get angry at your husband not yourself your trying to make the planet a more comfortable place for your child and if your husband can't or won't be a supportive partner in caring for the child that he helped to create than ****** him you don't need him you can handle this on your own. Like you I get very little support from my family but my friends are my sanity, and my inspiration to do it one more day and they remind me that I am the parent my child needed because I fight like a savage to get him what he needs and watch out telling me no. BIG BIG hugs on the not smoking I'm still not smoking either. My friend who quit with me fell off the wagon but I'm still there. I'm a huge fan of the deep breathes and when all else fails I go to the playground and swing on the swings as high as I can I feel like a kid again when I had no problems at all at least for a couple of minutes.

    Last edited by Liamsmom; 07-25-2006 at 08:21 AM.

     
    Old 07-25-2006, 09:43 AM   #10
    patcher
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    Re: Autism has ruined my life

    Thanks for your comments, I feel the support and understanding from those who are experienceing what I am. I feel that there is hope and that I'm not loosing my mind.

     
    Old 07-25-2006, 10:45 AM   #11
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    Re: Autism has ruined my life

    WOW!!!!!!!!!!!!!!!!!! you have explained exactly what we all have gone thru, liz and everyone had wonderful replies, i was in that dark place for several years, my son now is almost 18 and we have services i had to fight for them. but hang in there it does get better, i am now trying to get a job after loosing so many cause of him, but it will get better,

     
    Old 07-25-2006, 11:27 AM   #12
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    Talking Re: Autism has ruined my life

    I have so been in your shoes. I don't get enough help either. My husband does try to help, but he can sometimes get frustrated. It is very hard to try to plan your life. You must live day to day, because if you expect things to go well you may get dissapointed. On the other hand if you think only negative you become depressed. It's a battle with my mind I just can't win. I'm doing well though the last few months have been great, of course with the daily not knowing of what to expect every second they are awake. My child is five, and none verbal. YOU MUST ASK FOR HELP. People on the outside don't understand the every day grind we go through. If you don't get help you risk harm to yourself, and your children. Just try to stay positive, and pray.

     
    Old 07-26-2006, 05:31 AM   #13
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    Re: Autism has ruined my life

    While being the Nana to a 5 year old autistic sweetie, Drake, your post took me back to raising my bipolar son, Drake's father. My husband was gone a lot with his work, and raising Jon fell pretty much to me. I hit the low you are talking about, to the point that one of my oldest and dearest friends came to visit me from another state, and told me later that she thought I was going to exit this earth. Obviously, I came through it, and what I learned about myself during that time made all of the difference. This may help, and it may not. I just thought I would share with you in the event that there is anything that I learned that could help you.

    I learned that I had to reinvent myself...shed a lot of what I had learned about parenting from my own parents who instilled in me that "what happens in our family stays in our family".....in other words, I found my voice! I learned to share with others, I asked for help, I learned from others, that while my experience was not totally theirs, there were enough points of similarity that we could talk the same talk. Secondly, I was introduced to the term "AFGE" which stands for "Another Fu_ _ _ _ _ Growth Experience". I realized that I had the CHOICE as to how I saw myself, as a victim, or as a volunteer on some level. And if I did "volunteer" for these growth experiences, then I needed to look at them as opportunities to learn, and accept my son as my teacher. I decided to make it my goal each day to start looking for anything that was positive, to set my sights on the good that was happening around me. It may have been as simple as "Jon didn't sneak out last night after we were sleeping and go joy riding in our car" (he was 14) or "he didn't attempt or talk about suicide today...." or, as I read in these posts "My 10 year old drew a complete circle on his own." There were days when it got down to "I brushed my teeth." Slowly, I started to crawl out of my deep and dark hole, taking these tools with me that I had learned. 10 years later (and you will get there!) I can honestly , (and I do openly) say that Jon has been one of my greatest teachers, and that I wouldn't be who I am without having had him to raise. Now I will admit, when Drake was diagnosed, I went through a mini-spell of "poor me, haven't I learned enough?????" , but just as quickly shed that old skin because it IMMOBILIZED me, it kept me from moving forward in an effort to start collecting information, Ideas, and tools that we would need to help him.

    I don't intend for this to sound like I know it all or anything like that. I share with the understanding that I have been in a place similar to where you are, and I just want you to know that it can and will get better!

    God bless you....

    Nancy

     
    Old 07-26-2006, 10:20 AM   #14
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    Re: Autism has ruined my life

    Hi Nana, I totally get what you are saying about the immobilized thing. This is what it comes down to for mothers going through this.

    1. It's be immobilized and have no control over your situation or

    1. Be proactive and regain that control you feel you've lost and begin to do anything and everything to help our children and ourselves. That means seeking support in any form necessary.

    You sound like a very smart woman and wisdom from the experienced gives the newer mom's to a dx the hope and clarity to get through. Thanks for sharing your story Nana.

     
    Old 07-26-2006, 10:31 AM   #15
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    Re: Autism has ruined my life

    I feel so sad and yet so relieved that there are SO many of us in this situation. My five-year-old daughter has just been diagnosed with PDD-NOS. She is extremely high-functioning, but it is still a nightmare sometimes. I have 3 other kids. My daughter's tantrums are the worst thing. They just turn our house upside-down. And WHEN she does tell me she has to use the bathroom, most of the time it's too late and I have to change her anyway.
    It is ME and not my husband that is impatient. I get so upset and wonder WHY because I have been through so much already. My husband says that I made the choice to make a baby, so there you go. Sometimes I don't think our marriage will make it because he doesn't see how our daughter's condition is killing me.
    The other situation is that I live in a SMALL rural town and don't know any other parents in our situation. I put my daughter in the early intervention program in January and it was just SO tough for me to walk her in to that class every day. I knew everyone was watching. I felt...embarassed. Is that awful to say?
    I feel for ALL of you whose kids are worse off than mine. I hope I don't sound like a crybaby...but I just think it's tough no matter what the situation is. Autism is a nightmare.

     
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