Hello,
I am having a really hard time today, after having a few weeks of strength, and I thought it was because I went to this Christian counselor who does this attacking anxiety program in our area. Anyways, we have a child with autism who has been through a lot this past month including a seizure. The last time we went to the counselor she talked about how we should try to treat our son as normal as possible. It really helped me, and when I left the session, I also heard something on Christian radio about this book that includes a family whose son has autism who decided instead of just chasing around treatments to treat their child normally and although he wasn't healed, the stress in their family subsided. Well, I won't say that my husband and I have done everything we can, but we have done the best we can. There are times where we try different treatments, and times where no progress is made, and we just kind of give up. Though not completely, because we are always parenting our son and taking care of him. Autism really is 24/7. Well anyway, I expected to go back to counseling and receive support and insight, but everything went down hill. The counselor proposed a program for our son, but it was through an organization that I am familiar with, worked for, and saw the children mistreated. I am sorry that I know the truth about this place. The counselor agreed with me, but she just kept saying that we weren't doing enough for our son. She said for us to devote our lives to curing our son. I can't tell you how gutt wrenching this was because we have tried different things, but we are only human beings. We have moved for our son when God has led us, we have tried a couple of med's though we have not stayed completely on that road, but we are going to try again this week, we have taken him to different speech therapists, fought the school system on several occassions for services, but no, I am not standing over him being an autism instructor 24/7. It's so hard. I really got upset, and made my husband talk more since he is way less emotional than me, however, everything seemed to be directed at me. The counselor also said something like, "if this were my child...I'd do". It really hurt because I don't know if she knows enough about what we've done eventhough we've told her some of it. She kept talking to me about medication for my son, eventhough I already had the appointment this week for the psychiatrist for my son. She said that tylenol is just as risky as risperdal an anti-psychotic that's use hasn't been studied long term on children. That is just not true. There are risks with everything, but that is not the same. Anyway, I finally told her that she didn't understand, and she shared something about her daughter being sick for six years. I definitely feel that she could be sympathetic, but in reality, it still is not the same situation. We've been told our son has an incurable brain disorder, and in reality, no one knows exactly what to do. Even the experts don't know, and we've been told that. I mean, it's hard to have agoraphobia and anxiety which definitely sky rocketed after my son's diagnosis, and then be told that I'm not doing enough for him. She also believes that when I calm down, he'll calm down. That's very hard. I'm sure I upset him sometimes with my anxiety, but there can be days when I'm actually calmer and he may not sleep that night, and at three o'clock in the morning, I can't tell you how much I blame myself for it, but rationally, I really think it's his autism. I want to have hope for my son, I really do, but I also know that there has to be a level of acceptance as well because if he continues to have severe autism throughout my life and his, it will be absolutely devastating if I'm always beating myself up and saying that I didn't do enough, or he didn't sleep because I was anxious. It's just too much. So I don't feel like there's ever going to be any help. I know noone is perfect, but I just try to receive support through therapy, and for some reason, the therapists just seem to be exasperated with me and our situation. I am open to the truth. I mean I got mad, upset, and started to cry today, but every time she went to say something, she would say, "I know you're not going to like this" so ofcourse, I would get on the defensive before she even spoke. I told her I felt attacked, etc. Anyway, I don't know what to expect anymore regarding therapy or help. For some reason, I had a good therapists in my life for three years since my nervous breakdown. It wasn't perfect, but it was so much more supportive. Now, I just can't seem to get that help and validation from new therapists, and I don't understand why. I just really didn't expect that no one else would put up with me. I know that I'm more skeptical than I used to be. It's so hard. It's so hard when after he was diagnosed, the therapist said he doesn't have full blown autism and to have that help, and then five years later he's worse. It's hard to want to try. I don't want to hurt him, I just don't have the strenth all of the time. It's like I try, I get disappointed, and then I give up for a little bit, then I get back up again. It's just that I've seen things not work for so long now. What should my expectations be? Am I just this horrible mother who no therapist wants to treat? I don't cuss anyone out, I try to do this program, I exercise, and I had a really bad time with medication so ofcourse it's hard to try again. I just feel like I am never going to get better. Please pray for me and my family.
luvpiggy

`

If I read what you said correctly, then it may be that your
Christian counselor is right. Here's why ....


You said she told you that you should send him to this person
and that one because you are not doing enough.


Right?


Well, she was PROBABLY not saying it in a bad way.


Hon, you yourself said that this autism problem is
24/7, and you don't wanna do that. LOL! I couldn't agree more!
Just because we love our children doesn't mean we have to
turn wrinkly and grey
10 years after their birth! You feel me?


So, maybe you should accept some outside help, luv.


Even if it is some place other than the one you are not
pleased with. You know??


Autistic children must be very hard on the brain, and NOBODY
WITH HALF AN OUNCE OF LOVE AND UNDERSTANDING should ever
call you a bad mother just because you want some outside assistance
in order to help your child get better!!


You have my word, dear. i will definitely say a strong prayer
for you, your huby, your child, and anyone else involved
in his therapy. Okay?

Hi,

HOpe this helps but I have a friend who lives in my neighborhood who has two autistic boys and staying home raising them so I have heard how hard it is on the family and listened to her stories. She is a strong Christian woman and I don't think I could do what she does but I guess God gives strength. Hang in there girl one of her boys has come to the age that he is now manageable and sings in the choir. There is hope. I wish she could talk to you. Anyway, if you need some help get it. No shame in that.
Love ya,
Sandra

dear luvpiggy, ((((mom))))...=there's always going to be people who "think" they/you could do it all better....often they are people NOT in your shoes. what you need is support-you are trying to get it, and seems you made good decision on therapist who does this program and you thought shared your same concerns. people are imperfect, and can sometimes cause us more pain than good..if you feel that particular therapist is not supportive and truly helping you all by the way you feel from the way you feel after sessions...then, with all on your plate, maybe not the right therapist for you..and perhaps another better match out there that would uplift your efforts at caregiving, and your own personal needs that need bolstering. ((((luvpiggy and family)))...doing your best at the time, is your best. helpful things are what you are looking for--if it doesn't "feel helpful", then perhaps look elsewhere. strength to you dear caregiver, and may you find what builds you and your efforts and family need's up.

{{{{luvpiggy}}}}

My heart goes out to you as a mom with a special needs child. I don't have any experience with autism, so I can only image the pain you are suffering.

It sounds to me like you've unfortunately gotten hold of a therapist that's not right for you. I agree with JT that you probably need outside help, but it needs to be from a source that you feel good about.

I replied to a post by Donnamarie about feeling guilty as a parent of a child with autism, so you can read my personal story there. But I'll say to you what I said to her: "Don't let ANYBODY make you feel guilty about the way you care for your son. Especially not someone who has no idea what you're going through."

Yes, maybe she had a sick daughter, but was her daughter autistic? Each child has different needs, and autism is very unique in how you handle it. You must be drained at the end of each day, that is, IF you know where one day ends and the next begins. I'm sure it's a blur sometimes.

I've never been to a therapist for this reason. I can see that it takes so many attempts at finding a good one. You've been through so much already, I'm so sorry you're having to go through this too.

I know what you mean about becoming more skeptical. Yes, we want to have hope for our children, but we're not stupid either. We see the writing on the wall, so to speak. We feel we owe it to them to be prepared for anything. I think people that don't have to deal with this kind of thing on a daily basis just "wish for nice things" and they expect you to be able to pull it all off. And when you don't, it disrupts their perfect little world (or their idea of how it should be) and they point their finger and call you "bad." This way they can walk away feeling all warm inside about themselves and just forget about your hardships.

I know I'm sounding cynical, but it's true. I've seen it way too many times.

My point is, no I don't think you're expecting too much. I think you should expect more. More from your therapist. More from the school system. More from the doctors. And from yourself, more self love.

You're doing a great job and by golly you should toot your own horn!

Take care of yourself. You deserve it.

`

Very well said, Skippy. VERY well said!


Ummmm, especially the part where you agreed with me.

Hi There,
I know exactly what you are feeling. Thanks to Skippy today I felt better. I am going to give you my email Tigosanglx2@aol.com. You can email me anytime. It took us three years to get a diagnosis for my son. I have done so much reading the more I read the more angry I get at doctors and therapists. They treat our children like they are all alike they are not. You are a good mother, You are a special mother, Please if I can say one thing go with your heart when it comes to your angel,cuz that is what was given to us the chosen few. we were given angels. Do the best you can that is all you can do. Don't listen to whom ever is telling you that you are not doing enough, they have no idea. Stay positve. Remember you are not alone. I cannot tell you that everyday will be easy I cannot promise you that you will not cry. But look for the small miracles. There is no greater love than the love of a mother. Please dont be hard on yourself I have been in therapy for 8+ years. I have decided against meds for my son due to all the side affects and I am currently looking for natural therapys will keep you posted. I thank God everyday for my Johnny Angel and for all the nice people on this program.

Thank you all so much for replying to my post, especially Skippy and DonnaMarie. It really does make a difference when people know exactly where you are coming from, and it makes a difference when someone that doesn't understand admits that. I have just been feeling so guilty, that I woke up early this morning, and I have been obsessing over this. I don't think the therapist was trying to hurt me, but when I told her that she didn't understand and my husband validated that we had tried all of these different things, she just wouldn't let it go. I'm definitely not going back, but I do want to write her a letter out of love and do it in the context that it may help someone else in the future. I agree with JT that I need help, and we do get help in different ways, but this person said that we as parents were not doing enough, that we weren't trying things long enough, and that if it was her daughter she'd keep going do...etc. But thank you everyone for replying, and it does help. Thank you also Skippy for pointing me to DonnaMarrie's post about feeling guilty over having a child with autism. My e-mail is dspenc3@slis.ua.edu for DonnaMarrie, but I am definitely going to e-mail you as well.
God Bless Everyone,
luvpiggy