to all the moms who have received dx or PDD-NOS, AS, Austism for their kids..

torrey111

I just need some insight as to how you are coping with it.  

Some of you seem so relieved and glad that you will be able to get more services.  Don't get me wrong, I completely understand that.  My trouble lies in the overwhelming fear of the long-run.  How do you not get consumed by the what-ifs?

I start every day fresh, positive, and ready to take on the challenge, but the days are increasingly getting harder as the by-products of what he has come into play in our lives.  It leaves me feeling so, so worried.

Thanks in advance for your thoughts! 

meghans30

I am worried. I hit a wall late last night and had a good cry that carried over into the am. But, I think the future would be even scarier if we did not face the problem. We have been able to protect him and work with his interests , but the gap is widening. I have confidence that by getting him the social skills he needs that his future is bright. It is nice knowing we are not alone in this.  

CrazeyJaneyR

I have so many ups and downs. It changes weekly, daily, by the hour. What has helped is finding other people who are in my shoes. Support groups, other moms with SN kids, places like here.  

 

It is so hard living in the gray when I am more comfortable in the black or white. 

lindzed

It's very difficult in the beginning.  For me it has gotten better because I can see the changes in my son over time.  One thing I did was quit reading negative stories.  I think getting all of those worst case scenarios out of my head helped me a lot.  

torrey111

yeah, I'm on the same page as you all.

I think right now I'm plagued by a constant state of "abject terror" as Auntie put it. I can't tell if his symptoms are getting worse, or because I read about this stuff all day, every day, and think about it 24/7 I just see more than is there.  

Lately too, social things with friends are coming up and he's getting really sad about it.  I think he's realizing that people don't want to play with him.  Last night, he was curled up in a ball on the floor crying about it. 

It's heartbreaking. 

Yet at the same time, we go out to dinner tonight at a really busy place, and I just see him do one socially immature/inappropriate thing after another.  I try to talk him through it, like okay, this is why this is inappropriate, but it never seems to stick.  I feel like I have the same conversation every. single. day.  With no results.

My heart is just breaking and we need help! 

finsup

We aren't quite to diagnosis yet, but I will say that I felt an odd sense of validation when the school psychologist gently told me "these are some red flags for ASD and we think we should puruse some additional evaluations".  Although I thought it myself, EI therapists, my pediatrician nor his first special needs preschool teacher ever said the word to me.  Now that it has been said I feel like we can move forward with a more concrete plan (maybe? ).

Sometimes I feel like I really relate to what I read, and other times I think "thats not my kid at all".  I think I'm beyond the point of feeling defensive about it or even shocked or in denial, but I'm definitely still processing it all. It a total rollercoaster.

I go back and forth daily between hope and optimism to fear and despair, again the damn roller coaster.  One thing I have found that helps a bit is to take a break from the message boards, blog, articles etc for a few days or a week and just enjoy my kid without spending all of my free time reading up on stuff and loading my mind with all the information I can find.

Big hugs, we are in this together, virtually.

 

torrey111

finsup:

We aren't quite to diagnosis yet, but I will say that I felt an odd sense of validation when the school psychologist gently told me "these are some red flags for ASD and we think we should puruse some additional evaluations".  Although I thought it myself, EI therapists, my pediatrician nor his first special needs preschool teacher ever said the word to me.  Now that it has been said I feel like we can move forward with a more concrete plan (maybe? ).

Sometimes I feel like I really relate to what I read, and other times I think "thats not my kid at all".  I think I'm beyond the point of feeling defensive about it or even shocked or in denial, but I'm definitely still processing it all. It a total rollercoaster.

I go back and forth daily between hope and optimism to fear and despair, again the damn roller coaster.  One thing I have found that helps a bit is to take a break from the message boards, blog, articles etc for a few days or a week and just enjoy my kid without spending all of my free time reading up on stuff and loading my mind with all the information I can find.

Big hugs, we are in this together, virtually.

 

True that!!!

hopanka

I consciously avoid going there in my head. It does me no good to stress about things I cannot control because they have not happened yet. I'm already stressed enough, so I make myself not think about that. I have to say it takes time, though. I have been at this for some years now and went to he'll and back to get to a place where I don't think about the future all the time. I relapse from time to time and get scared and cry, but it's much more spaced out now. Good luck and be good to yourself.

Anlo

When we first got the dx, I was caught up in wondering what could have caused DS to have ASD - did I do something wrong, eat something wrong, could I have done better, on and on. Eventually I had to put that out of my mind for my own sanity. I make a conscious (though difficult) effort not to think about it. I just couldn't go there anymore.

To a degree, I've had to take the same approach when thinking about the future. I limit my thoughts to the things I can do today. I read somewhere (it may have even been here) that you do the best you can with what you have today...then let today go. Give it your best, then give yourself permission not to dwell on what didn't get done.

It's never easy. The rollercoaster highs and lows can come fast and hard. But as PP said, we are all virtually in this together and I take some comfort in that.

houndbaby

When it was first brought up by EI that ds had red flags, I took it really really hard. It had been in the back of my mind, but hearing it made it real, and terrifying. By the time we actually got the dx months later, I was kind of at peace, it didn't really change anything besides having it documented on paper. Over the past year I've really done all of the stages of grief. Sometimes I think about ds's future and what he may be like in 20 years and wonder if he'll be able to live on his own or hold down a job, I wonder what he'll be like in 10 years and worry about him not having any friends, not being invited to Birthday parties, being bullied by the other kids... When I see stories about the autistic kid that gets beat up on the bus, or the autistic kid getting put in a duffel bag as "therapy" it makes me sick to my stomach with worry for ds. I try not to think about these things too often and DH always has to remind me that he's only 3 and we don't know what his future holds, we don't know what any of our kids futures hold ASD or NT. I just try to imagine the best possible future I can for ds and hold on to hope

torrey111

-auntie-:

torrey111:

I think right now I'm plagued by a constant state of "abject terror" as Auntie put it. I can't tell if his symptoms are getting worse, or because I read about this stuff all day, every day, and think about it 24/7 I just see more than is there.  

Lately too, social things with friends are coming up and he's getting really sad about it.  I think he's realizing that people don't want to play with him.  Last night, he was curled up in a ball on the floor crying about it. 

I think this is partly a function of being older. For me it was really weird to have this kid who you have always assumed was NT struggling. It kind of derails your self confidence around your skills as a parent that this kid lived with you all these years and you didn't know.

And then there's the whole notion for parents of kids who have Aspergers and milder forms of PDD-Nos that your child is keenly aware they're social pariahs. My tears are for him now and not necessarily for myself.

It's heartbreaking. 

So true. There have been times when a situation went so badly I lost a week of sleep over it. In first grade DS wasn't invited to alpha girl's birthday party when the whole rest of his class was. I was physically ill over it. Though I must admit taking a great deal of personal satisfaction in catching alpha girl's dad in a corner booth with some hottie who isn't his wife. And that make me feel awful about myself. But hey, I'm not the one driving the karma bus.

DS didn't get picked as a band officer last spring. He screwed up and his director refused to allow a concession based on his IEP. He told me it wouldn't be fair to the other kids. WTF? Since when is my kid's dx fair to him? An IEP is meant to level the playing field. Unfortunately, I manage the uniforms for this man and am not in a place where I can say something just yet. He probably gets a couple hundred hours of volunteer help from me. DS was adament that I not bail and not say anything until he's graduated. But he will get my thoughts on the subject after graduation and I suspect he's going to feel pretty shitty about it because he's a pretty nice guy who takes a great deal of pride in being every parent's favorite teacher. So he'll get an email and I'll c.c. the principal and superindent of school as well as the school board and local Asperger support groups. It will be an ugly footnote to his file and hopefully cause him to think differently next time.

Yet at the same time, we go out to dinner tonight at a really busy place, and I just see him do one socially immature/inappropriate thing after another.  I try to talk him through it, like okay, this is why this is inappropriate, but it never seems to stick.  I feel like I have the same conversation every. single. day.  With no results.

My heart is just breaking and we need help! 

It might be better to give him clear expectations before dinner rather than react to immature behavior. A Social Story could be used or even a verbal contract. Take a proactive approach rather than try to talk him through something when he's already over stimulated. Set him up to be successful- choose dinner out at a quieter place or a calm Tuesday evening. Sometimes the bitter pill is that you can't do what other families get to do with ease. It's not fair, but things seldom are in Asperger World.

All so true Auntie.  If I don't go to bed thinking/totally worried about him, and thus, can't sleep, I wake in the middle of the night and it's the first thing in my head.  

Yes, it's VERY weird to have a kid you thought was NT for so long and to find out that it's not the case.  It has DEFINITELY made me think that I am the most ill-equipped person to be a mom.

My pain yesterday when he was so upset about his friends completely stemmed from the pain he was feeling in his heart. 

This last part is really helpful advice- he almost literally couldn't sit still in his seat!  When we were waiting for the table he was acting out some scenario in his head- moving around awkwardly considering there were others standing around waiting too.  There were other kids near and I saw them watching him- he had no idea.  He was totally in his own world until I had to tell him to stop. He was banging his back against the seatback over, and over.  Or he was bouncing up in down in the seat.  If we weren't engaging him completely in discussion, he was zoned out- staring off into space some of the time.  It's weird because half of the experience seems so abnormal and weird, and the other half seems totally normal because he does carry on conversation and initiate new conversations...

I am so going to use a Social Story next time and the expectation thing would work well too.  You're right, it's not fair, and I'm beginning to see that it never will be. 

malcivar

This Thursday will be 5 months since we got our dx and it really is a day to day thing at this point.  Some days I'm ready, I can deal with this!  And then other days I just cry and I look at my beautiful little boy and rage at the world.  Why him?  (Why me?)

Like another poster said, sometimes it just helps to put down the laptop/computer and step away from the msg boards, the blogs, the research and just spend some time with your child.  Hold them, kiss them if you can, just enjoy them.  Makes the next day easier. I try to do that on weekends but there are many weekends when something will remind me that DS isn't like every other child out there and I'm heartbroken.   

I don't know if we ever get to get off our roller coasters, but the only advice I can give you at this point is just enjoy the lulls as much as you can and hang on tight for the bumps.  :-)

 

mommyof4boys

For which kid? For Christopher I felt validated.  When Jon got the diagnosis this summer I struggled.  I was mad at the world, at the situation, and oddly mad at Jon.  Matthew has GDD and I was mad at Jon for being our "last hope" at being a typical child.

cnybride2be

the  pdd-nos dx-I was relieved in some ways and felt validated because I already had known for quite some time. and still entirely saddened and disappointed. I think I cried once, about a week after dx, i forgot about this until now.

Now, I swing in how I feel. sometimes i feel ok because K and 1st grade went and is going better than we thought,  But, I am really fearful of the coming years with the social aspects that come and the realization ( his realization esp) that he is different. and I worry most that he will be sad. and that for me is the most frightening exp. right now he is far from sad, and i want to keep it like this well forever.

gheesh watching your kids grow up is difficult enough without a dx. i'm trying to toughen up for all that I fear.  there is so much unknown in our coming years.

ETA-love it that auto correct changed pdd-nos to add ons. changed it.