Do you ever feel .... m

[sosotired]

lesser of a person because of your situation with your difficult child? I can't think of any other way to word it.

I always expect difficult child to be the cause of the problem. I always assume the worst. I always expect there to be some sort of a half truth in the explanation.

In turn, I'm embarassed. I want to fade into the woodwork. I want to smooth everything over. I want to stay under the radar.

This is not who I was just 5 years ago. I just seem to have no fight left. I rarely enjoy anything anymore because I'm afraid he's going to throw a fit and embarass me, or go anywhere because we'll run into someone he's had a problem with. I'm even finding myself apologizing for him when he's done nothing wrong.

Has anyone ever felt this way? How do you realign your thinking?

 

[HaoZi]

While I get plenty exhausted from it all, there are times even I have to remind myself - She has something that makes her different, maybe if people were more aware and sensitive to it, they'd trigger her less often.
For the time being I'll ignore the &&^%$s that like to trigger people like her on purpose for their own amusement.

 

[Malika]

Oh, thanks for your honesty, sosotired. I can recognise all that... especially the wanting to fade into the woodwork, smooth everything over, stay under the radar.
Last weekend we stayed with a friend, who had some really encouraging things to say about my son... it made me realise how rarely I get this kind of perspective on him from the outside. And not getting it from the outside, it's so very hard (being human) to generate it from the inside, for oneself. What's the answer? How, as you say, does one realign one's thinking? Something that has worked TO SOME EXTENT for me is a determination to have fun with my child, to the extent that that's possible, to enjoy times with him - this allows me to destress (to some extent!), to not take things so seriously, not get into heavy-duty battles so much, to introduce some humour (to which he is always very responsive). Having only one child to think of makes this easier of course. I realise that a real trigger for me is being in public, those times when my son acts up in public or refuses to listen to me when I am being watched (or feel I am being watched) by a critical audience. That's my next thing to work on... keeping my calm and sense of humour in THOSE circumstances rather than getting all riled-up and furious with him. Something to do with detaching from him??
Having a difficult child is so hard. I don't know how anyone does it

 

[KTMom91]

Yes. Absolutely. I remember those days all too well. I used to refer to Miss KT as "The Marplot" because she managed to wreck even the simplest get-together, one way or the other. For a while, I just stopped taking her anywhere with me, then I heard from my mother how terrible I was.

It does get better. Many hugs.

 

[Malika]

Can you say more about how it gets better? Because your daughter "got better" in those situations? Because you got better at handling it?

All trade secrets gratefully received!

 

[JJJ]

Yes, but at times I realize that it isn't always my child causing the ruckus. When I relaxed enough to pay attention, I saw many 'PCs' causing their fair share of the chaos, but because their parents weren't terrified of an impending rage, their discipline was more relaxed and targeted to just the current actions, where mine was a pre-emptive strike against the possible worst. A little parental PTSD, if you will.

 

[Running_for_the_shelter]

My mother certainly did, raising me. She benefited more by talking to the family counselor than I did; that was one of the few tools in the box back then. Here are a few things I wish I could have told her:

1. Yeah, everyone wants their kid to fit in, but it's not a reflection on you that your kid got a bum deal with the genetic dice and has a developmental delay/brain defect/whatever term you like to you.
2. Would you be embarrassed if your kid were in a wheelchair because of a congenital defect? Maybe not so much. It's not much different, Mom -- the only difference is that my problem isn't visible.
3. I'm doing the best I can. Or, at any rate, other children aren't working harder than I am at behaving. It just comes naturally to them, but it doesn't to me.
4. Having the "electrical storm" in my brain that makes me get mad when other people wouldn't doesn't feel good to me, either, but I don't know how to make it stop. [Side note: They didn't have good medications for that when I was a kid, but my son is a happier person for Lamictal.]
5. The space between stimulus and response is essentially zero for me. That's why I whack people when I get mad -- I don't even know to stop and think first. That function is just gone. However, I'll develop more space as I grow and then I can learn some better responses.
6. Life is really, really hard for me. Please let me know you love me even though I'm a pain.
7. Please remember that I didn't choose to be this way. No one would.
8. Finally, you need to get some help for yourself, Mom. A good therapist is good; maybe even some medications because you're depressed and have no energy anymore.

 

[keista]

You're going through a rough patch. ((((HUGS)))) been there done that It can get so difficult at times especially when we feel we have no control, or the therapies aren't working, or nothing is working. BUT there are always bright sides, the small joys, the 'interesting' ways our children's brains work, their unique gifts and talents. Yeah, sometimes you have to look really, really, really hard to find them, but they are there.

One tip parents in my support group (BFOCASD - last I heard they were going national) was to have a "business card" explaining Autism (in your case specifically Asperger's) which they would hand out to ppl who were staring while their child had a "meltdown" in public. I never had to do this, but only after hearing that other parents did do it, did I feel empowered enough to say to ppl, "He's autistic, I'm not quite sure what just set him off, he's a puzzle that changes everyday." No precursor of an apology, no apology at the end. What on earth do I have to apologize for? That my son has a disability? Ah, NO. Of course, if he does some actual damage there is always an apology for that, but I have found the strength to NEVER apologize for the disability itself or any difficulties it may cause.

You can also now 'advertise' his disability without being so obvious. Autism has one of those 'cause ribbons' that have gotten so popular - it has a myriad of colors in - puzzle pieces. First time I saw it I thought it was brilliant - puzzle pieces, yeah, that's exactly what son is - a puzzle. Wear it, carry it, display it. Those with half a brain will make a connection, those that don't - well, they probably wouldn't 'get it' if you explained for hours, so what does their opinion matter anyway?

Long before I ever even thought of having children, I was touched by an essay I saw printed in a Dear Abby column. http://www.our-kids.org/Archives/Holland.html This stuck with me all those years. Unfortunately, with difficult children of any kind, it's not as simple as getting off the plane and ending up in Holland - for a long time we are led to believe that we are actually in Italy. Too often ppl blame us for ending up in Holland, sometimes we end up blaming ourselves too. And really, we're not even in Holland, because Holland has a "well defined" 'tourist trade' We're actually some place more obscure like Lithuania which is beautiful, and rich in culture, but you might have to "look harder" to find all the interesting wonders.

So, you're going through a rough patch. There is no easy way to turn your thinking around, but the fact that you recognized it and want to change it, is a good start. So start by empowering yourself. I've found the Serenity Prayer to be a great template for sorting and finding strength: Grant me the strength to change the things that I can, accept the things that I can't and the wisdom to know the difference.


((((HUGS))))

 

[BusynMember]

When we first adopted Sonic, he would rage in public. Once he got away from me and went running ahead of me in a mall and I had to chase him while he screamed like he was being abducted by a crazy lady. Now this may not have been such a big deal normally, however he is black and I am white so it probably COULD have looked like I was trying to abduct a little boy who was not my own. When I finally caught him, he started hitting me and screaming like a wild animal *sigh*.

I guess I"m saying that I know how you feel. I totally expected somebody to pull out a cell phone and call social services or the police. Nobody likes it when their child acts up in public. You are only being human.

I have nothing to offer but my empathy. I think you do grow a thicker skin as time goes on and often (not always) our kids do learn to hold it together in public.

About the business card: I wish they had had that when Sonic was little. I think it would have been easier when some "well meaning" person tried to give me advice. I really like that idea.

Hugs

 

[1 Day At a Time]

Oh yes, I have so been there! I agree with Keista, the serenity prayer is a real help for some of those times.

It really does get better, though. Hang on to your patience. Now when I see folks gazing at difficult child, trying to figure him out, I'm much more relaxed. He is who he is, and diversity is really a good thing. I think it's good to them to see someone like difficult child - he challenges their assumptions.

Valerie

 

[Shari]

One of the worst things about being the parent of a sped kid, is being treated like a parent of a sped kid.

(hugs)

 

[hamlet]

sosotired, I definitely feel that I'm always waiting for the next shoe to drop. Sometimes I worry that I can't even feel or express the depth of my love for difficult child because there's no space between us for something that simple - every interaction is complex, every event has so many layers, every statement has multiple meanings. I'm constantly questioning, "What does this new thing mean?"

When we go to see his therapist and she asks me "how is it going?" even if there's been no outbursts or cataclysmic event I still feel like crying. I'm constantly on the look-out and maneuvering to try to prevent a blow up. Some people have described it as walking on eggshells; it's the same feeling I had living with my emotionally abusive ex-husband.

I'm a newbie so I won't presume to give you advice, however I picked this up from Allan Katz who blogs and posts here. He said that the first step can be to relax the atmosphere in the home. I believe in that since I'm already following the advice of a book called Scream Free Parenting by Hal Runkel. Also, my Buddhist beliefs have taught me that my desire to rid myself of difficulties and pain is suffering in and of itself. I can't rid myself of suffering and even if I managed to get rid of this particular pain I would still have pain. Better to focus on the joy!

I hope we can both find a way to enjoy our difficult child for what and who they are.

 

[Wiped Out]

Oh yes I've been there, more than once. I love what RunningforShelter wrote!

 

[Marguerite]

I still get people giving me the benefit of their wisdom, when they haven't a clue. yesterday I got "You realise that this new problem of his, not being able to concentrate, is because you let him play too much computer games? He's just not interested in doing his schoolwork, that's all."

They're not the ones sitting with him, watching him struggle, trying to stay on task, trying to come back on task, coming to me and asking mer to explain it to him. Yes, he plays a lot of computer games, but I think it is chicken or the egg - he plays the games as a coping strategy, and the worse he feels, the more he struggles, the more he feels he needs to do other things online or with games. I see the gaming as a symptom, not a cause. But of course, "he has me fooled".

Another thing that cheeses me off, is when people try to 'manage' him in ways we know are not a good idea. We don't send him mixed messages except very carefully with obvious "this is a joke" signals. But other people are too subtle, and too confusing, then they get upset with him when he gets angry or does not respond as they want him to. The relatives and friends that complain, "But I was only joking!" really don't get it. Frankly, the friends that do this we learn to avoid and they soon stop being such close friends. The relatives - you can't choose them.

Because I also am disabled, I get the patronising crud a lot. People have assumed (they have asked me, that's how I know) that difficult child 3's autism is because I am disabled. They think my limping when I walk is indicative of mental weakness. Just try me, boyo! I can run rings around people in any topic except sport.

How do I handle it? For a long time I tried to ignore it, but now I confront it. Politely, but firmly. I will even make a joke out of it because these comments and behaviours come from people feeling uncomfortable and ignorant. So I make them smile and also reassure them that I am perfectly mentally competent, thank you, there's nothing wrong with me. Then I walk off, twitching obviously.

Marg

 

[InsaneCdn]

Yes, but at times I realize that it isn't always my child causing the ruckus. When I relaxed enough to pay attention, I saw many 'PCs' causing their fair share of the chaos, but because their parents weren't terrified of an impending rage, their discipline was more relaxed and targeted to just the current actions, where mine was a pre-emptive strike against the possible worst. A little parental PTSD, if you will.

I just wish someone would have told me this 10 years ago...!

 

[KTMom91]

Malika, the "getting better" didn't happen for years...I had to learn to be more structured in my responses to Miss KT's all-or-nothing thinking, and as she matured, she became more reasonable. Her hyperactivity was off the charts; Ritalin was wearing off after an hour, and she was literally bouncing off walls at school. She couldn't (can't) handle changes in routine, and I would have to stick to the plan and be prepared to leave the store/meeting/church/whatever with a screaming, kicking child tucked under my arm. Since I was a single parent, it was a challenge to get the basic chores done without her cooperation, but if I gave her too much input and/or leeway, she couldn't handle it, and that would almost guarantee a meltdown.

I learned to go grocery shopping at 6 am, when the store was empty. Fewer people meant a smaller audience for her fits. After we finished loading up the cart, we went to the bakery section, where she got to choose one thing from the donut case. Doing errands after school, when we were both tired and hungry, was a disaster. I learned that Target is full of fascinating things, and sometimes I just had to pick her up later from day care rather than put her into a situation she couldn't handle and I didn't want to deal with. Small trips, one thing at a time.

I learned to get over being embarrassed (for the most part) at her antics, and believe me, that gets harder when they get older and are supposed to "know better!" I learned to pick my battles and stand very very firm on what I was not willing to negotiate or let slide, not only from Miss KT, but from her friends, teachers, coaches, doctors...and also, to fight FOR my kid when necessary, against those same friends, teachers, coaches, and doctors. So, basically, I was getting up into people's faces on a regular basis. District administration knew who I was...and they still let me work there!

I don't know if what I did was right; all I can say is that I got to the point where I didn't want my daughter to be a professional victim, and that meant teaching her to advocate for herself and learn to be as independent as possible. It's still a work in progress, but when I look back, I can see how far she's come.