What is it like to be a Parent of an Aspie?

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Parenting a child with Asperger's Symdrome is stressful and rewording to most parents.

As with all parenting, some days are better than others. Chris can be very loving and profound "you are the best Mom I have ever had in this life or any others". Or he can be emotional as in yesterday he cried for me after I left to go to the gym for an hour which in turn caused his 2 year old brother to become hysterical (lucky hubby!). Somedays he has 'mood swings' where he is fine and happy one minute and fully irate another to the point of shaking and or hitting his sibs. He can tell you practically everything about Star Wars, but insists on confirming the facts with you over and over and over again. This does drive me a little batty since sometimes I have no idea what the answer is and other times I am stressed from dealing with Chris' sister or brother. He has an active imagination and loves to read (so do I) and I am very proud of this and encourage him.

I mostly worry for him that since he is taking a different approach to life that it will be harder for him to succeed. I plan to try to teach/instill in him that there are times when we just have to conform to the rules (following directions and stay on task in school) so that we can later achieve what we want (grauate HS one day and go to college or become a peace officer). My wish for him is that he will always know that we love him for who he is and that here at home none of us is perfect or the same. and that is okay. I personally think normal is very boring (maybe that is why I was gifted with an Aspie).

I wonder if I am an effective parent. I think Chris makes me scrutinize things more than I would normally. It is very stressful! I worry about Chris' mood swings and social misunderstandings hurting his sister and brother. It is hard for me to see Chris be rough with his 3 year old sister (who is half his size). I don't want to alienate Chris but I do not want to see my daughter hurt in any way. Chris 2 year old brother throws things and hits (terrible twos I know) but some things he has picked up from watching big brother. Somedays I don't think that there are any easy answers. I just hope that some of the things that Steve and I do will make a positive difference and that Chris and his sister and brother all have a happy life.

Katherine

My son also has bad mood swings (and can also tel you all about Star Wars, LOL!!). We've always said it's like having twins rolled into one child. He can be so loving, but then he'll flip out for almost no reason and cry, or hit me. He will also refuse point blank to do what he's asked to do.
I remember when he was 2 years old we tried to take him for a walk but he kept stepping in the road (he refused to walk with reins on and refused to go in a pushchair!). I was so stressed, trying to keep him on the pavement. My husband eventually said 'oh for Gods sake just let him go and get run over). I was VERY angry and upset with him at the time, but I now realise he was just at the end of his tether. We were just so tired of fighting with Sam over every tiny thing, especially as he was non-verbal at the time.

My son is twenty, almost twenty one and we didn't really have a diagnosis till he was 17. All we knew was that he was subject to periodic meltdowns for no apparent reason and had some symptoms of ADD, Hyperactivity, and obsessive compulsive disorder, but not exactly any of them. We thought about Aspergers, but a shrink we brought him to ruled it out because he was able to make eye-contact intermittently and aspies can't possibly make eye contact. We finally realized that the first shrink we took him to was probably an aspie himself. Anyway he made it through HS and got a job in a pet store where he did very well working with exotic birds. He has been taking college classes while working and the meltdowns have all but disappeared. He is a sweet person, with a Commander Data type of fascination with humor, always wanting to know what is funny and why. Loves the Marx Brothers, so he has a sense of humor of his own too, but is always upset because he can't explain why he finds something funny. His constant use of ten dollar words when a two bit word will suffice is annoying, but we try to be understanding. The main concern we have now is his total lack of friends. We feel he needs some other people in his life to help him understand people better and give him a sounding board for his ideas about the world, which are sometimes truly bizarre.

Today he got on a plane for California, where my sister will watch over him while he tries to establish himself workwise and later enroll in college. We couldn't be prouder of him. All of his life he has avoided taking any chances and trying anything new. We have had to push him every step of the way, but his one he did pretty much on his own. Now we are waiting for his phone call letting us know he has arrived safely. We have high hopes and I really don't know who is more terrified of this new step, our son, or us.

My son makes eye contact and was diagnosed years ago with ocd but now we know its just the aspergers. I am glad to read posts like majun's it makes me know that there are others out there that have troubles but more importantly successes. Sometimes it can get overwhelming when you see what some of these kids face and my heart goes out to all the parents, we all know the heartache of watching our kids struggle with the whole friend thing. I guess I will never understand why my son doesn't have any friends cause he is such a neat guy.

I haven't even introduced myself yet, but I really wanted to comment on this topic. I'm Sandy, the parent of a 13 year old boy who has just been diagnosed with AS. I have spent so many years trying to figure out how to get this child to "act normal" without losing the uniqueness that makes him so amazing. I finally know why it was so difficult.

What is like raising a child with AS?

Frustrating - because I spent so many years not knowing what was wrong and doing the things that were supposed to work with NT kids and having them not work with my son.

Embarrassing - because everyone thought that I was just a bad parent.

Humbling - because God gave me this amazing child and trusted me to do the right thing.

Frightening - because I knew that there was a piece of the puzzle that I was missing and there was no one to help or understand. Also, because I always knew that I was walking a fine line, with my parenting skills having a huge impact on how he would be able to function in society. My ex-husband used to joke that he had savings put away for our son, he just wasn't sure if it was going to be for bail (to get him out of jail) or for college.

Lonely - because there was no one that truly understood what I was going through.

Enlightening - because I felt compelled to pull him out of the public schools and homeschool him, which allowed me to live outside of the "system" and be free from societal expectations (to a degree). Living on the outside allowed both of us to grow and learn to truly appreciate diversity. Instead of seeing what was wrong, I was finally able to see all of the things that were "right", like his amazing math skills and interest in science; his strong faith and his inability to lie; his desire to do the right things, regardless of the consequences; his ability to be himself without being concerned about societal norms. All of this has allowed me to grow and change and become a better person myself.

Sandy

I would just like to say that as a parent of an almost 11 yr. old Aspie boy, it is a struggle in futility the majority of the time. My son showed sysmtoms from birth on, I feel as though my life has revolved around him alone for the entire time since then, at the expense of my life and the lives of my other children. He is the most loving, sweet child at times that you can almost forget that he hated you and told you that he was going to kill you five minutes earlier. He is brilliant in a lot of ways, he soooo artistic and funny. But, he is volatile most of the time. I home school him and have for about two years, we are going to be trying part-time school this year, we finally have an administration that wants to help him be the best he can, so woo-hoo! Anyway, being his mom and having Asperger's myself makes life a little stressful at times, but in the end I know that I am preparing him for life on his own or not, the best I can. I think that is all that we can do.

I love literature. This essay describes some of my experiences.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

HDIGhere, that was totally on point!
Thank you!

I live in Holland. Hm.

I'm a parent of a girl with Asperger's and I have Asperger's myself. Since we know all is fine. Before we knew I couldn't figure out what was going on. Not with myself as a parent, not with my very bright and intelligent but somtimes slow daughter.

I didn't have another destination in mind. I guess this metaphor works for NT-parents with Asperger children. I went to Italy and got there, as a matter of speaking. It fits well to have a daughter who is more or less just like me. Because I know what is going on, or what might be going on, I hope to help her overcome the pain caused by social problems. I will not underestimate her (as I have been in many many cases) and make her feel smart inside but stupid on the outside.

Thanks to members like you I know that AS has many individuals who have been able to overcome their social etc. problems. As a results, seeking advice on this site has helped me to assist my 19 year son who has "classic autism".

In "Rainman" (I know some people hate this movie but my son is like the character minus the counting cards) the movie had a place to assist the AS character, here I fight like a dog to get help.

Even when I go to doctors I get more pity and have been told I am wasting my life trying to help my son, in fact, recently he went into crisis and to date his regular doctor has not returned my numerous calls for help.

I love my son and would not give him up, for example; thanks, to him and his obsession for videos I am better able to live this "bug's life" and "just keep on swimming".

our son was diagnosed 2 monhts ago after years of bashing our heads against brick walls to get help. its not helped by the fact he is adopted so we have know familiar history. most of the time we try to keep him calm and not to stressed, its like walking on broken eggs, whne his brother is around ( non aspie), would appreciate any advise or other experinces

It's both scary and stressful. The scary part is not knowing what will happen to my son when he grows up. Will he be able to get married? Will he be able to get a job? Will he be able to button his pants and wash his hair and blow his nose? What if I die? Will he even miss me? I know he loves me but if I died I think he would just accept it like changing the channel when his show is over. But when I do die, who will take care of him and love him forever like I do? I don't want to burden my daughter if he needs care, so who will do it?

The stressful part is fighting with the doctor and school and my husband and wanting to beat the crap out of everyone who is mean and hurtful to this sweet and kind and innocent little boy.