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Grieving, self pity, anger

post #1 of 10
Thread Starter 
Sigh..Long story short: DD has always been "odd", she was "diagnosed at age 4 with PDD/possible Asperger's. "They" also suspected ADD (impulsivity!!!!!! and other symptoms) "They" also highly recommended meds. DH and I refused..we had heard too much "bad press" and wanted to try other things. Finally, after nearly 4 years of TRYING and a re-evaluation with a new doctor/therapist, we decided to try DD on meds..She's old enough now that her behaviour is not cute or quaint or "spunky" like it might have been seen at age 4 or 5.

I cried all day. I felt we had failed somehow, but DH and I felt it was for the best to help DD function in the real world. 2 days later dd and I left for a 3 day camp. She was her "normal" self (normal for her") When placed side by side "normal" kids, her problems were obvious if not MAGNIFIED. Most of the other girls looked at her and acted like she was a freak on wheels. We muddled through it. I cried my eyes out today when I got home. Cried for myself not having a "normal" child" ,cried for dd for having to deal with other kids' cruelty. If anything, it steeled our resolve to begin meds.

After calming down, I check out Mothering and there on the Parenting site is a thread basically bashing "behaviour disorders" and medications for them. Like all I need to do is homeschool and cut out refined sugar and all would be well. Dang that made me mad!!!!

Excuse me while I go cry some more...
post #2 of 10

i feel for you. i didn't see the article but my friend's daughter is severely autistic & i have seen the distasteful looks she gets from strangers & "friends" when no one knows i am watching.

you do what is right for YOUR daughter & who gives a flying fig what anyone else says, or thinks!

i hope you will keep posting here, the moms in this forum are so awesome! good luck.

love, jenny
post #3 of 10

i'm so sorry, nankay. i can't imagine how hard it must be to parent a special needs child some days, especially when you are reminded how "different" they are. i think what you are feeling is normal and necessary. you need to grieve, for you and your dd, in order to get on with the healing process. i am not in your shoes, and can't offer any personal wisdom, i just wanted to validate your feelings and let you know that it's okay to be angry, and to grieve, and to feel bad some days.

the article was a tough read for some, i'm sure. my feeling on articles like that is they are trying to speak to society in general and not parents specifically. it's kind of like saying "hmmm, i don't think having a nice green lawn in your front yard is a good thing for mother earth" without saying "hey mum, do you realize you're responsible for polluting the earth when you spray that weedkiller everywhere and then water your lawn during a drought??". the former is supposed to stimulate thought, the latter is an attack on a person. anyways, i don't know if what i'm saying helps, just that I didn't get from that article that parents like you need to feel any guilt or blame, etc (and i didn't think it was that great an article anyways). from reading the posts of the mamas in this forum, it's obvious that you all do your very best for your kids and i couldn't have more love and respect for you!!!!

post #4 of 10
Nankay, you have every right, even necessity, to get angry and sad about your situation sometimes. It *IS* unfair! My biggest fear for ds in the future is other children's cruelty to or avoidance of him.

I could relate to your response to the article in Mothering. I felt the same way reading things on breastfeeding after I decided to give up trying when ds was 10 weeks old. It infuriated me that during a time I was trying to come to grips emotionally with my baby having Down Syndrome and his having open-heart sugery at 2-1/2 weeks of age, when he spent so long in the hospital where they bottle fed him, when I worked with two lactation consultants and had to pump my milk every three hours around the clock in addition to feeding times - causing my nipples great pain and me great exhaustion - when it broke my heart each and every time I tried to get ds to latch on and he pulled away crying, and in addition to the fact that I had had breast reduction surgery so didn't even know if we would have been successful in the best of circumstances, I had to read all these articles which basically said that if you are really committed you can breastfeed no matter what.

To this day I feel embarassed and guilty when talking to other mums who managed to get their babies to breastfeed despite obstacles. I constantly have to remind myself that I did the best that I was capable of, and made the choice that I felt was best for both of us. If you have tried behavioural strategies for FOUR LONG YEARS (!) without success, I say more power to you in your choice to try meds. It is in no way a cop-out at this point. In fact, it could be argued that not trying them would be irresponsible.

Please let us know how dd does on the meds. Best wishes to both of you!
post #5 of 10
I am so glad you posted this. I was just coming to this forum to vent about my heartbreaking experience today, and I open this thread up only to see a post from someone who can relate.

My kid (15 year old dd with a developmental level ranging from 3-10 year old depending on the area) is in a play right now. He is a very creative kid, so even though rehearsing 3 hours a day for months was extremely difficult (sometimes impossibly so for him), he has enjoyed the creative outlet. He also made some friends, which is so wonderful for him.

Tonight was opening night, and after the show, we took him to dinner at a restaurant where people were celebrating the opening. The kids put on some music (we were in a private room), and a bunch of them were dancing around. My son, who loves to dance, started dancing too. He's not a bad dancer, but he is obviously "different" in *everything* he does. It also doesn't help matters that he is a pretty effeminate guy.

Well, a couple of the older kids made some very cruel comments to my son. These are kids I know fairly well because they are in a program I run. I expect better from them! They are educated in differences through our program, and all of the kids that I saw get involved have been raised by parents who model compassion. I was so extremely disappointed. And I felt just terrible, just heartbroken for my son. One of the kids (another kid in my program) did tell the kids who were being mean to chill out, which hopefully at least helped DS feel a little better. My SO and I still ended up getting DS and leaving pretty soon thereafter. It was just too sad to just sit around and watch the cruelty.

And if this is the way the "good" kids behave, I can only imagine the cruelty DS endures when he's at school with all the kids who haven't learned about celebrating differences...the cruelty he endures when we aren't around to help him deal.

This isn't the first time and it wont be the last. I know the main thing is to teach him skills to deal, but part of me feels really furious that *I* have to teach my son to deal with cruelty because even "good" kids can't be kind toward someone so different.


Anyway, I guess what I'm trying to say is that you aren't alone in the grief, the anger, and all that. Also, my DS is also on medications. I didn't make that decision (he was with another family at the time-- we are foster/adoptive parents, and his social worker continues to push that he be on them), but even though I am not a fan of medications, I do have a lot of understanding for their use. I'm glad that we can come here and take comfort in talking with each other. I felt so alone today when I came to post my experience about DS. It is good to talk with others going through the same thing.

Many hugs to you and DD. You have not failed. You are doing the best you can for your daughter with special needs, and you are giving lots of thought to all that you are doing. I only wish there were more parents like you...

post #6 of 10
(((Nankay))) I am so sorry that you have been going through so much, trying so hard, and then people who don't know anything about your situation have wounded you with their ignorant comments. You sound like a mom who has been through the mill, and I wish all the best for you and your family.

(((Sierra))) I can't believe that happened today! Is that why you can't sleep? You must not only be devastated for your boy, but also so disapointed in the kids you have worked with. Are you going to talk to the kids about this later?

You have had a horrible week, and I am sorry.

post #7 of 10
Originally posted by dlb
(((Sierra))) I can't believe that happened today! Is that why you can't sleep? You must not only be devastated for your boy, but also so disapointed in the kids you have worked with. Are you going to talk to the kids about this later?

You have had a horrible week, and I am sorry.

Thanks for your support! I must admit that the scenario is certainly not helping me get to bed. I'm not sure whether to talk to these kids, and if so, how. Their part of the program doesn't run in the summer, so it will be sometime before I see them again apart from the chaos of the play. I also feel pretty funny about how to approach it, especially since it happened outside of the program, and it had to do with my family. Any suggestions?

post #8 of 10
I am so sorry you are so upset. I would feel the same way. I think its totally normal and natural to grieve about your childs problems, and the loss of "what might have been", and to wish maybe she was "like other kids".

However, let go of people, articles, doctors, whatever, who simplify that if you cut out refined sugar and homeschool all would be well. thats bull. I'm not saying diet changes cant and wont help, i'm just saying that you have tried for quite a bit of time to help your child without using meds. Meds can be right for some children!
post #9 of 10

How well do you know the parents? I know if my sons had done something like this, I would certainly want to know. If your program that you work with emphasizes diversity, I would think that a parent who took the effort to sign their kid up for it might be especially concerned that their kid was teasing someone.

Maybe you could just explain what you wrote here. You are a very calm, rational person, and I know you can do it in a way that would be constructive.

Were you tempted, even just a little, to throttle them? I know I am when someone hurts my kids, then I remember I am supposed to be an adult, setting a good example.

Nankay, thank you for sharing your story. Maybe you'll help some people to think twice before they start spouting off simplistic answers.

post #10 of 10
Thread Starter 
Thank you all for your replies! We just got back from a little 3 day family vacation and things really went well. Reading all these warmed my heart.
Sierra...I tip my hat to you! I think dd would LOVE to be in a play and I hope someday she can pull it all together and do so!. I agree with the poster who said if it were my child doing the teasing I'd want to know about it!.
What's hard is dd doesn't recognize "social cues" so if it's "quiet meaness" (not talking to you, turning your back etc.) DD doesn't see it for what it is. This leaves me in the rotten position of trying to explain that those children don't want to play with her. Even outright teasing goes over her head sometimes and she thinks it's funny and joins in on the joke at her expense.
My greatest fear is one of these days she is going to glom on to the 1st person (male or female) that shows her the slightest bit of positive attention and not let go.
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