Stress Center Peer Support

Hi,
I'm the mother of a ten year old son who has severe autism, and I have had severe anxiety. Before my son was diagnosed, I had the occasional panic attack, etc., but I could function. After my son was born, I gradually got worse, but it looks like it was complicated by the fact that something was really wrong with my son, and autism isn't diagnosed at birth so I just thought I was crazy for over two years thinking something was wrong and there were plenty of people around to tell me I was. After he was diagnosed, I did better for a few months because my intuition was validated, but then I basically had a nervous breakdown when I worked in the new town I had moved to and saw the children with autism be abused and there was an F-4 tornado.
So, in short, my anxiety is complicated because of having my son with autism and all that implies which includes many nights without sleep. This program has definitely helped me. Over the past year especially, I'm starting to do well again, but I don't work-but I'm better from having the rest with what I have to deal with with my son. Right now, the two problems for me are to stay at home by myself or with my son completely by myself, for me to drive by myself, and for me to go out in public without my husband. I mean sometimes I can be dropped off by myself, but not all the time. However, I'm serious that two or three years ago, I could just go out to go back and forth to work or therapy. My husband had to go to the store when I was in therapy. So, today, my husband and I went to sign language class to help my son which was across town, and I did it with no problems, and have been doing many things like that, even traveling out of town. One time my husband had to go on an interview, and I went with him and stayed in a nearby library, but was able to be left alone while he went who knows where on the interview for lunch for two hours. That was miraculous for me:). So, I just am so grateful for all of the improvements even though I'm not completely cured.
However, what I'm noticing is that I'm being really hard on myself. I tried to get together with this single mom who has a son with autism, and we were going to try to start a support group. She called me yesterday to say she wanted me to meet with this other person right after the sign language class that we both go to. I would need my husband to drive me, and he saw that he didn't have anything right after the class. When I got there, she said we weren't going to meet until forty five minutes after the class. I shared with her about my anxiety, and I also have not gotten much sleep this week because of my son, and I do feel like I am getting sick. To go to the sign language class when I felt sick, etc., was still a big deal for me. However, when I told her I may not be able to go to the meeting later because my husband couldn't take me, and I didn't feel well, the mom said,"Don't let the fact that you're going to be around people stop you. Don't get isolated." I immediately told her that I was pretty honest about that, and that that wasn't what it was. Also, just telling me not to be afraid even if I would have had anxiety wouldn't have made me not be afraid. All of us on here would be cured if that's all someone had to say.

Anyway, I just left there feeling bad. This woman is a single mom who takes care of her son with autism by herself, and here I am struggling just to make it out without my husband. I need to have more friends in my life, and I have met other mothers of children with autism who have problems like mine, but they are online. I need to make friends with someone in my town, but I just didn't feel good after that interaction, and I just feel like a failure even though what I'm doing on a regular basis in my functioning is a miracle compared to a few years ago. Also, there was something else concerning autism that we disagreed with. There's controversy in the autism community about saying that a child with autism also has mental retardation. The latest research is showing that individuals with autism are no more likely to have mental retardation then the rest of the general population. My son is severe, and I just don't believe he is MR too, but this mother says that she believes her son is eventhough he's higher functioning then my son. I told her about the research, but she disagrees which she has every right to do. But it just made me feel depressed. I'm scared I'm not going to be able to get out there and make friends in person. I'm going to have to do it in baby steps, but I don't know that others have the patience or understanding. Overall, I'm just frustrated because what I'm doing now is such a miracle at the same time, but it's not enough when I compare myself with this mother and other mothers who can drive by themselves, etc. Anyway, I'm venting:(.

Hi luvpiggy,

Hang in there. It sounds as if you really have your hands full, but that you are doing well in spite of it. Don't forget that you're not only taking care of your son, but you're working on yourself as well, and both are important. It's easy to forget about one's own needs when a family member has a problem and especially when it's your child, but don't forget to care for and be nice to YOU.

I don't think you should be worried about what that woman said. She may seem "to have it together", but she also seems to be very opinionated, and people like that tend not to be sensitive to the feelings of others. I don't think you need to be around that kind of person right now, anyway.

A friend recently said to me that I wouldn't worry about comparing myself to others anymore as soon as I develop a vision of my own for my life. The starting point for this is cutting ourselves some slack and being our own best friend, so we really don't need to be concerned what others think or say.

I think it would be nice if you could try to get out in a setting that is purely social and that doesn't relate to your son's autism. It sounds like you're trying to combine taking care of his needs with your need for friendship. I think you deserve some time for just you. I know it's hard to find the time, but taking care of your son's mom IS taking care of him.

Good luck!

i don't even know if you will read this but I have 2 special needs children twin girls that were born premature. I had become isolated also because any time i got around other moms with noraml kids i would talk about whatever milestone i was working on with my girls and would compare with other preemies and their moms and i was always falling short. I wanted to be a parent so bad and I don't want to damage my daughters but I had let my anxiety and my current relationship with my spouse which is not on solid ground get the best of me until i landed in the psych hospital, which is the thing i fear the most. Well it happened i flipped out totally, I was so scared that i checked myself into the scariest place i have ever been. but i learned in there that i never wanted to end up there again and that I would do whatever it took to stay out. one day at a time i have to stick up for myself with my angry spouse who scares me, i have to stand up to my 3 y/o daughters who were controlling me with their moods and temper tantrums and most of all if I have to stay completely away from people in order to not have someone put me down without knowing it i will have to do that too. I don't need any takers in my life or critical people who judge and comdemn. If I can't find healthy people to hand around with then I don't need any people at all. I draw the users and abusers and until that changes until I heal and realize i don't deserve that then i will keep drawing that to me. if it was up to my husband I would be seen and not heard and I would just buy everything he dishes out. I have been not standing up for myself for so long with him that i ended up with a nervous breakdown from denying my feelings. he has hurt me over and over and I have just taken it all in and let him make me feel crazy. Life is hard, people can be cruel, and yes we have to take care of ourself. For those of us here i think we all suffer from low self esteem, anxiety which turns into depression. to keep our mind stable we may need medication as i do but as far as you and your son, my nephew is autistic he is 33 now and they did say he was retarded too years ago. It doesn't really matter whether he is or isn't he is what he is. I feel for you i have known other mothers of autistic children. no matter what the mechanism of malfunction is it is what it is and that is what you have to work with. I too compare myself to other mothers who seem to be handling life way better than me but are they really? what do we really know about them? what do they hide from us just like we want to hide our dysfunction from them. It doesn't matter what they appear to have that we don't we grew up with our own unique setof circumstances that made us react to life as we do and only God knows what we have truly been through. Do whatever you have to do to feel safe with you. People will always fail you but only one stands closer than a brother and that is the God of the Trinity. He will help you when no one else can not even your safe person. God did not give you this autistic child that was not his best for you but it is what it is. Do the best YOU can do not what you think someone else can do. That is all you have to do. I have email friends too I don't have time to make relationships like i used to and the ones i do make are always dysfunctional still and i end up hurt and sick. You are NOT alone. There are so many people out there struggling with the same things I met them in the hospital from all walks of life. It opened my eyes. It was 4 days of hell well spent. Sometimes it is in the hardest thing we could ever imaginge that we learn the most. I know that sounds like a cliche and i couldn't have said it last week but I have to keep in the moment. I have to quit taking on other peoples pain and anger like a trashcan for all their junk. I deserve better than that . well i hope you will be better and if you need another email friend my address is abigail.good@yahoo.com

luvpiggy,

I can see how you would be tired and that I know will elevate anxiety. If I am up late doing homework and do not get adequate sleep or eat healthy I can feel shakey and anxious.

I cannot 100% relate to you as I do not have a child with autism. I have worked with children that do, but that is not the same as 24/ 7 / 365. That is more than a full time job. I hope that you see that and give yourself a HUGE hug for your selflessness, love, commitment to your child and family.

Unfortunatley, sometimes confiding in some people then will have them judge you in other instances even when it does not even apply in that particular instance. You did not feel well, lost much sleep. I would want to go home too! She may have said that to be supportive or encouraging as well and maybe it came off in the wrong tone/manner. She is a single mom and I bet she also is stressed from her job and working with her child. I know it is hard not to take it personally. You are doing the best you can. You did not feel well and needed to take care of YOU to take care of your son and family. If you do not care for you, WHO will? There is no shame or feeling bad about that. She would not be the one getting up with your son all night long, it is YOU! You need to do what you need to do to care for you! PERIOD!

All of our struggles are different. The issue may be the same, but circumstances are different. You cannot compare you and anyone else in this world. She may be a single mom, but who knows. I have heard stories of the poor me thing that I am doing it all by myself or have seen people be in situations that it appeared they were "alone", but they have church helping them, neighbors, a mom or sister, co-worker, neighbor,...and I do know of some people that really do it all on their own. We all are different! We cannot compare ourselves to others...if we did then we can take that a step further...my neighbors drive a Benz,I do not, my neighbors have a summer home, I do not, my neighbor shops at Macy's, I shop at Walmart, my neighbor has a housekeeper, I do not, etc, etc, etc. You know how down and depressed I would feel comparing myself to everything that is around me? I do not know what their circumstances are, someone may be helping them financially, they may be living it up on credit, who knows. I just know what I have and what I can do...that is all that matters! I cannot look at everyone else and look down on me and compare. But even if I did, if I stopped a second at looked at ME, I have a lot of great attributes, abilities and "things:...they may be different, may not be as great to them, but to me, it works and THAT is what matters. You have a husband, she does not. You can stay at home to care for your son, she may not be able to.

Well she can believe what she wants and so can you. You educate yourself with whatever you need to and you take care of your son the best way you know how. I am not sure what would classify MR, but if that is what she wants to believe, let her have at it. Maybe she wants a bigger cross to bare. Some people like being the martyr. Others may use the situation to get pity as well. (or assistance from family, friends, state or federal government) Do not let what she said depress you.

You have come a very long way you said. Doesn't that count for anything here? I sure think it does! You are caring for your son as well as yourself. This anxiety and depression stuff is hard enough to deal with, let alone add more responsibilities on top of that? Please! You need a HUGE medal! Stop comparing yourself to others. Do something for yourself each and every day, even if it is a journal entry telling yourself how well you handled your son, a situation, how much you accomplished around the house, your travels without your husband.

I have to say before the program situations and people controlled me. I reacted to them. I let things bother me. I blamed others for the way I felt, I gave THEM wayyyy too much control over me, the way I felt. I needed to stop even if people were doing stuff to make me feel bad and control me. What they say or do does NOT define me by any means. I know who I am, what I am capable of and what I do. I do not need anyone telling me why I do the things or say the things I do. I stopped allowing peoples comments or judgements rule me, my mood, my perceptions. I still remind myself of this many of time when I am in those situation because it is too easy for me to take those things to heart, think, over think, feel bad, then think some more which makes me feel worse and it just keeps going around and around. STOP the cycle!

We live in the metro Chicagoland area and there are support groups within hospitals and even church groups. Are any of those resources available to you? Maybe speaking to his MD, maybe he can get a group together and meet at the hospital. You will make friends. You sound like a really nice person and I know you will make friends. Please do not let this one person bring you down! ALl the hard work, all the obsticals you have overcome...are you going to let this one person, this one interaction blow all the positive things that you have accomplished? You can keep accomplishing too...it is all in baby steps.

When I was agoraphobic, I was afraid to leave the house or even drive. One day I just had to, my husband was (still is as I go to college full-time) the breadwinner and could not keep taking days off. I had to drive myself to the MD's. I shook, I cried but I fought the urge to return home to my safe zone. That was so very difficult. I did accomplish other "feats", but those were with the help of my husband at first. (grocery store, waiting in lines) It was about desensitizing myself, so I saw that those situations were nothing to fear, that the fear was created by me and had nothing to substantiate it. It was a process, a patience, loving process from my husband and a patient, difficult, stomach turning, shakey experience for me. Work yourself up to those things...After the MD experience, I told myself that I needed to drive everyday, even if it was to get the morning paper at the gas station, milk at the grocery store...something everyday to desensitize myself no matter how nervous I was. I know it is hard with anxiety and then the added responsibilities you have, but I also believe you CAN do it!

Originally posted by Garrett:
I think it would be nice if you could try to get out in a setting that is purely social and that doesn't relate to your son's autism.

Hey, I was thinking the same thing! Sure, it's important to stay connected to people who are going thru the same things you are but you have other interests, don't you? Things you like to do just for you. A friendship could be based on those things so don't be looking in just one area, friends are all over!

Originally posted by luvpiggy:
The latest research is showing that individuals with autism are no more likely to have mental retardation then the rest of the general population.

That's true, I read that too. I don't know but my theory is that while some kids/people with autism seem unreachable, that doesn't have to mean they're retarded, could mean we don't yet know how to communicate with them or get them to want to communicate with us. It's OUR lack of knowledge, not the autistic person's. It's easier to say they're retarded than it is to find a way to break through the barriers. I see it as an excuse to give up. Though remember, I'm not in this single mom's shoes and I don't have a clue what she goes through on a daily basis. I'm sure she has her reasons for feeling as she does.

You've made a lot of progress luvpiggy. If there are things you can't do just yet, accept it for now, and bask in the glory of all you CAN do. You will one day accomplish all that you want with patience and perseverance. It's not important how long it takes, only that you get there.

Thank you all for taking the time to respond to my post and give me such good advice. I really appreciate it, and I feel so much better. You all really made some very important points, and it really helped me.

Thanks again:)
luvpiggy