Too sensitive? | Autism PDD

I have been told 2x this week by different people (a close friend and a family member) that I (and DH too) am too sensitive to the diagnosis of pdd-nos. The one family member is very upset with us to the point that there is a conflict because she feels like she has to watch what she says because we're "too sensitive" to any comments about autism (things like everyone is on the spectrum or all kids do that). It's true I AM sensitive to those type of comments, they upset me greatly

It really galls me that at a time like this the response is not sympathy, concern, support or practical help but judgement on how we are responding or what we are doing. It hurts me that we have to somehow PROVE or justify our dd dx and people are refusing to acknowledge just what a blow this dx is. These types of confrontations are draining away the little energy I do have and depressing me more because it makes me feel more alone and like nobody understands. It seems they really don't.

I know I can never change people and I can only change my own reaction. I am having such a hard time getting over this as I think you can tell because I post about this type of thing a lot. It just makes me feel like I"m being beaten when I'm already down and by the people who are suppose to love and care about me.

Some of you have mentioned being "over" this type of thing and people and their ignorant reactions, even family members. Do you have any practical tips or strategies that I can try to employ to get over this? HOW did you do it? I don't like feeling this way, it's taking away time and energy from myself and my dd and it just makes me feel bad. I honestly want this stuff to roll of my back and not get offended but I honestly don't know HOW to make that happen. I am trying to get some counseling but it's difficult finding one that I like and finding the time and babysitting,etc. I was hoping I could get a head start from some of you on just how you went about tuning out those hurtful comments and chalking it up to ignorance and just moving on. That sounds so good to me.

Maybe if you tell these people a PROFESSIONAL has diagnosed your child,.... here is some basic info on the dx. Keep in mind many of us seem more autism characteristics in our child shortly after the dx - I dont know if thats because we now know what its all about and are aware of it and look more or what - and basically tell them you need time to accept that your daughter is going to need extra help and care to progress,.... there is no cure and no guarantee of how she will do, if she will ever be able to drive or be independent. Tell them to think about it if they were in that position with their child and tell them flat out right now I need your support not your negative comments. Doing whats best for her is going to require my strength and dedication and devotion. Its going to be hard to do if I am getting negative support from my family and friends.

They say to try to take at least 15 minutes or so to yourself everyday.... so if you can try to do that.

Remember as much as your daughter needs you to help her through this and to teach her she also still needs to be your daughter and to just be loved (and I know you do love her) But its ok to just go hang out and play too and interact with each other. Even if its you spinning with her or sitting and holding her and rocking her, etc. You dont have to be perfect and you dont have to be superwoman if you try you are likely to get burnt out and then you wont be of help to your daughter.

Are there any support groups in your area? Many of them offer childcare while they meet by trained people for free. Just like coming here to post can be helpful (and we're glad you're here) maybe if you can meet others in your area who are in a similar situation (even if itsa different form of disability - Im sure they can relate to alot of what we feel) it might be great to be able to let the kids play together at the park while you and the mom chit chat and can relate to what the other is feeling and support each other.

when my daughter was dx, my brother was the worst. he said that autism was just an excuse for my bad parenting. he would yell and scream at me for the things i was supposedly doing wrong. a few times we even got into physical fights (he's a big guy and i'm pretty small, but i was not at all afraid to give him the smack down!

). at the time i kept reminding myself of how he was raising his own daughter (to be selfish and materialistic) and that he was a dad only when it was convenient for him.

the turning point was when my daughter got to be a little older and more aggressive. i let him spend large amounts of time alone with her. he learned first hand how difficult she is. how aggressive she is. how non-verbal she is. he tried to "parent" her the way he thought was best. it only made the situation worse.

he has now become one of my biggest supporters.

i am so thankful for him because he is there to help me and defend me whenever he can. i also think that the time he spent with my daughter has changed the way he is with his daughter and his girlfriend's kids. he's finally teaching them good morals and values, and that material things are not always what is most important (even though his girlfriend seems to think differently, but thats another story).

Our biggest supporter is our worst enemy. LOL My sister. Since Adam's diagnosis has changed I have been going through a lot of emotions that I didn't expect to go through. I don't like what I read online about statistics and I am dealing with that in my own way right now. I honestly thought I was done with the "grieving process" only to find out that I was probably just too busy to really deal with my own emotions. So it shouldn't suprise me that my sister has been quite cold about my feelings. She doesn't understand how I could be grieving now when I knew that he AT LEAST had pdd-nos. Now that it is an autism diagnosis I think everything has just been made final for me and I am doing my best to deal with that. Anyway...I am one of those people that will injure myself by calling my sister and hoping beyond hope that "this will be the time that I get support". Well...she supports me in her own way and i dont' even think she realizes the hurt that comes with her kind of support. For instance......I call her and try and talk about how I am feeling about all of this and she jumps to subjects like, " i'll tell you what you need to do....you need to do this when he does that because if you dont' start now then it will hurt him in the long run" She makes me feel the pressure of if I don't do exactly like she thinks I should raise my child and he doesn't turn out mainstreamed or what she considers "normal" Then it will be my fault. Or that I will be less of a parent. She has the best intentions and I know that.....but sometimes she needs to just lay off and just listen to me instead of giving me suggestions to "fix" everything. She is the only person that can hurt me this way but it's because I love her and respect her so much. Comments from anyone else I am able to just brush off. So why is it always the people that we need to be supportive that are not or fall short???

So I am not able to always brush people off. It all depends on who it is.

Karrie

I keep a list of the things people say who just don't understand, here are some of my favorites and a few of the replies that are fit to print.

At a grocery store: "You should count your blessings, my cousin has a child who is autistic and deaf."
Reply, "I know how she feels, my daughter is autistic, legally blind, didn't walk until she was almost 4 and has an 8 word vocabulary."

At a coffee shop
"Down syndrome?"
Reply, "No."
"Fetal Alcohol Poisoning then."
"WHAT?! Go away you weasel or when my husband gets here you won't like it." He left. I found him a few days later an explained things to him calmly. I have a linebacker's build and my wife's use of the word weasel was accurate. He doesn't go to that shop any more because he isn't sure if I really am that calm all the time.

"She can walk, she just doesn't want to too." Baby sitter

"You are just an first time mother, don't over react." First peditrician.

"In five years you won't remember how hard this it." That one was from my dad.

But my all time favorite is this one,
"She doesn't have to be like this. You just have to pray and God will take the curse away."

So what these little statments have taught me is this, people in general are pretty dumb if they are related or not.

John N Texas38572.3242824074

I agree with Michelle. ther are some people that you simply must turn the page on. It helped me to replace the negative with the positive. I began to let God bring divine appointments into my life. I began to be open to the delightful, unexpected joy of 'unlikely' people entering my life and encouraging my son. I had to get over my own expectations for family members and old family friends. Once those folks were released from my life expectations, new friends came into my life like manna. They are such miracles. I can now appreciate the miracles that i see in Benjamin's life skills repetoire. Hang in there, as the old spiritual sings, trouble don't last always, the storm is passin over hallelujah!

Janet

I'm like Karrie -- what some people say matters to me more than others. When my parents were here and not terribly supportive, it bothered me to no end. When my friends say something ignorant, it doesn't bother me as much be/c I was raised to feel that one can always rely on family and no one else. Now that I'm older, I rely on God first, then my family. :) Well, God, my husband, and my family. The first two never let me down.