thoughts about self
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| Wed, 08-02-2006 - 3:56pm |
Last night I attended my first in person support group for parents of aspies. I started to think how has my life been affected by the dx? My social life has been limited because I'm exhausted, work hours have been cut so I can take care of son. I find I have to be very organized to get everything done. I also notice that I follow my instincts more often, that priorities have changed. I have become more flexible about somethings and more rigid about other things.I have learned that talking to insurance companies, medical secretaries and schools can be frustrating. It seems that people who owe me nothing are the kindest and try to be helpful. That people whose job it is to be helpful are not always helpful. I find that I try to be pleasant to those who seem to be having a tough time.
How has the dx affected you positively and/or negatively?

Good questions and a good time for reflection.
At the time of diagnosis over two years ago...It has made me appreciate my children more for who they are. It took a huge toll on my marriage and I am now getting divorced, although I can't say that I am totally to blame. I threw myself totally into being a great mom, but felt I still tried to be a good wife. DH just couldn't handle the it all. My social life suffered, I was too tired to do anything or go any place. All I was interested was autism and books and treatments and therapies. Not trying to cure my sons, but trying to learn as much as I can. I shut out my family because I felt that they couldn't understand and to a lesser extent still don't think they do.
Currently, autism continues to be a part of my life, I just no longer revolve around it. It's there daily in my job at work and at home. I rarely read about it. I skim the board and don't read every word as I use to. Not that I don't respect every single person here, but there is a thing as "autism overload". What a difference life is to go out and have fun once a week or so.
Anyway, interesting question. I am more assertive, and I was to begin with. Some people have been helpful, others have disappointed me. It has shown me what is important in life. Even on my worst days, I don't regret my son or that he has Autism--more so just the circumstances that surround it.
~Valerie
Well, I do regret that my son has autism. In fact, I am angry about this fact. I understand he has autism, but he sort of has it and sort of doesn't. he isn't obvious enough, but is also very self-aware. And the world is a bigoted, difficult place for him to live in.
So -- bitter? A bit. I lost alot of my dreams for myself, no time. I love my son more than anything, but I never wanted to give up acting and the theatre in order to be a mom, and for many many years I didn't. I wanted to keep acting and producing and raise him in that enviorment with interesting, talented, loving theatre folks. he did have that for many years, and we still have friends who love my son in the theatre. but it is so hard to see them, and stay emotionally connected.
My marriage is strong although tested very often very hard. I am lucky to be with a loving, deeply caring man -- with mild PDD himself, so he also struggles, but he understands ds even better than I do in many ways. And they speak each other's language, no moms allowed...
I am devoted to raising my son well. I am as feisty and driven as I ever was as a theatre artist, many skills apply to this new line of work/obsession. He teaches me alot about listening, really paying attention carefully. My understanding of him deepends daily, I still have so much to learn.
My friend and I laughed at the idea that when our sons are grown and well and independent and getting married, we would need to be carried into those weddings on stretchers, if this life continues this way for 10 - 15 more years...
Augh,
Sara
ilovemalcolm
The main thing about me that's changed the most is I've learned to be assertive. As I've learned to fight for the help my kids need I've learned to stick up for me own needs as well.
samatha
Wow! Good thread!
I have to think hard to remember my life BA.
visit my blog at www.onesickmother.com
This is a good topic.
Since the dx, I've learned to chill out a LOT more. First of all, I know that a lot of what I used to think was "willful disobedience" can be explain by Asperger's, so I don't feel like I'm a bad mom for not being able to "make him" act a certain way. I've gotten pretty good at keeping an inner calm when the kids are having a difficult moment. I've learned to keep my breathing slow and even, and to keep my face relaaaaaxed, even when DS is having a tantrum. Just today, he was having a "moment", and I was very pleased with my ability to calmly help him through it, without throwing in all the angry little jabs I learned as a kid. "I'll give you something to cry about, now suck it up and do as you're told!" The calmness is essential.
The AS dx has given me *permission* to do it my way. All that stuff in parenting magazines, and advice from MIL, etc...I'm not a slave to it anymore. I always knew David was different, and now it's official. So there, PLPPFFFFT, I don't have to listen to anyone's advice. LOL!
There's other stuff. On the negative side, I sometimes feel a bit of resentment about how ridiculously difficult it is to do normal things, like getting new shoes or haircuts for the kids. Many a weekend has been wasted away because it took five hours to get David out the house, and then once we got to our destination, someone has a meltdown and DH and I can't just look for the item we came for...and then one kid insists they can't possibly eat anything except Denny-saurs, and the other insists that they need Chicken McNuggets. It's much easier to cope with that stuff now that we understand about the dx.
I'm sure I'll think of more later.
Evelyn (who wishes peanut brittle wasn't so addictive and calorific)
Well, he did do great in school, we rent an apartment, borrow a car and I am single. xh has a new business, new wife, half a million dollar house. It bothered me that xh had all the material things I felt I wanted. But then came the first round of dxs last fall. There were things around the house that I didn't like, but I lived with them. After a hellish appointment I came home to ugly,broken (but clean) hall floor tiles. I asked (very unusual for me) a neighbor to help me tear up the tiles. Underneath were beautiful wood floors. I had the hall and 2 other floors refinished. What a difference it made in the house and in my attitude about coming home to this house. Slowly I added fancy soaps to the bathroom, nice sheets and comforters to the bedrooms. Now the house is welcoming and a place I am proud to show off and where I want to be.After the January dx it felt right to take son to our home.It was our home!But what made it more our home was that I saw problems with son and persisted through the drs and insurance until we had answers. His father may have the material things but he never saw/sees anything wrong with HIS son.I guess if you can buy enough gameboys and xboxes then you never have to look/deal with the problem,so I am glad that things worked out they way they did and that I am not battling his father for treatment for son.
What I have learned, unfortunatley isn't as positive as some other people have learned. I realized that I cannot keep all of the pain, dissapointment, resentment and hatred (toward other people and their families) to myself. I just started seeing a pysh. for my problems and have been taking xanax since December. I don't want to be this way but I don't know how else to be. I am a stay at home mom since I had my twins, almost 3 years ago. That is exactly what I wanted to do in my life and then I had it. I didn't want to be a special needs mom. I wanted to take the kids to all the fun programs, activies, playgroups, parks...but I don't because my I don't like the looks I get from people, I can't keep track of my son who only wants to open and close doors and spin things and then throw a fit when I take him away from things. I want to have conversations with him like I do with with his twin sister but he only says about 5 words...it will be 1 year since we had our dx in Sept. and I knew he was autistic almost 2 years now...I just feel like "What did I do to deserve this"? I think if I would have been a better person and treated people better (before I had kids) then God wouldn't have given this to me. But on the other side I think that God only gives these trials to people who can handle it and grow from it. I suppose I will at some point but as of right now, I'm a basket case.
Sorry to be a downer but it's the truth.
Keri
Mom to Autumn 10/29/00
Mom to Jordan and Jacob 10/18/03
Wow, where to start.
Yes, I wish life were "easier" with "normal" children sometimes. But what I've learned is that I, too, have a LOT of autistic traits and am sure if I asked the boys' psychiatrist she would say I'm on the spectrum, too. It answers SOOOOO many questions about my childhood, and many of the resentments about the mistakes my mother made (and there were plenty) were perhaps often not really her fault, so I've been able to make peace that she did the best she could with the information she had at the time. I've been able to break the cycle of borderline abuse and feel that I'm a good disciplinarian in the sense that I'm pretty effective with the kids. I'm learning to go with the ebb and flow of it and recognize when they are stressed out, tired, hungry or whatever, often in time to head off a problem. I've come to be at peace with who *I* am, and questions that plagued me about, "I know I'm intelligent, why is this so f-ing hard! I should be able to do this, why can't I?" have been answered (and without my autistic children those questions would have gone unanswered probably for life). I'm more able to appreciate my strengths and compensate for my weaknesses. I ACCEPT. I've quit fighting myself. I've raised my expectations in my own self discipline and have gotten help (and it's WORKING) for my ADD. I've come to accept my limitations. I do what needs to be done and I'm at peace with it.
I think I've learned what true love is. I can't put it into words at all, but I know what it feels like.
I have let go of wanting so many material things. In my former life I went to school for interior design. My house was as beautiful as I could make it. Now the carpet is shabby, the furniture is shabby, shoot, even the blinds are a bit shabby -- and not necessarily in a chic manor. But it's relatively clean and cozy and welcoming. It's just what I want.
The negative: it's so expensive to have special needs kids. All the doctors visits, therapists, medications for ADHD and my ADD, my husband's antidepresents. I face my son's going into 3rd grade with a bit of trepidation. 3rd and 4th grade were so hard for me, and I know they won't be easy for him. I'm worried about my 5 year old going to pre-K and hoping it will be positive for him. I know I will handle whatever happens, but pray it won't be too bad.
We too had much better finances before 911. And since our president's been in office funding for Parents as Teachers has all but dried up. All the services that were available for my 8 year old when he was a toddler weren't there when we needed them for the younger one. I've been much more aware of politics and corporate America and how "things work." I've lost my innocence, as we all did when 911 happened. I've lost a certain amount of faith in government and employers to do the right things. I'm scared for a future that may be very unforgiving of anyone who can't find just the right niche in the workplace.
Kelly
The honesty and diversity in these posts is blowing me away.
I have learned that you can plan all you want for the life that YOU want but God (or whatever higher power you choose) usually has other plans.
I was going to be a SAHM to my son full-time and only work at nite or weekends and then I would work full time when he was old enought to be home alone after school, he would go to high school, college, get a job, maybe get married and my dh would retire happily ever after. Now my ds is 9 and we are going to homeschool (yikes!) him so the full-time job is no longer an option. We most likely will downsize and buy a smaller house so maybe one day we can afford private school or continue to homeschool. My feelings about it all are both "Oh crap!" and "Oh well, you do what you gotta do" . Things change, priorities change and it's all about my son at this point.
It absolutely kills me to see the struggles that my son will have to endure as he grows up but we all struggle - these are just different kinds of struggles. I have to constantly count my blessings or I can very quickly fall down the slippery slope of negativity, self-pity and resentment.
I personally have little "self" at the moment. Believe me I'm not a completely selfless, compassionate and loving person all the time (just ask my dh!) It's just that for right now it's not about me - I'm 45 years old and have benefitted from stable, loving parents, good health, college, many good and bad life experiences and I will have more -just not right now. I am here to everything I can to help my son grow to be the most productive, capable adult he can be.
It's the hardest thing I've ever done in my life.
Jane