i was hoping there were more adults with aspergers here, i know there are alot of parents of newly diagnosed children, and then ofcoarse mj, but are mj and i the only ones? i would like to talk with other adults who are recovering from this disease/disorder.
I am here... i have aspergers.. and wow... let me see here..lol..... here are some issues that i still have.....
control.. more control.. and more control... extremem competiveness.. i have a 4.0 at school.. and i am still not happy.. if i get a 96 on a final.. i am mad.. surely i could have gotten a 98... or better.. a 100. and if there was extra credit.. 105..
we were drawing blood today.. butterfiles.. and although i have done it many times.. and am very adept at venipuncture.. i missed twice. man.. im still freaking about it. so bad when i got home i think i rocked for about an hour.
no one understands me.. at all. i need validation.. and most of the time.. t he things that i find SO important.. others simply shrug off.. w hich in turn makes me even angrier.
i have this issue with justice. fairness... when i see someone getting away with something. i hurt .. alot.. i rock.. alot.. when i see a documentary on tv and there are those that are suffering.. i totally go into my world... my brain goes way too fast .. all the time.. i have to take sleeping pill every night.. my grandmother just passed away last thursday.... and now i cant nap in the afternoon after school due to waking with panic... i want to know EVERYTHING.. i get obsessed over the same things that you do as well....
when i try to explain something to someone.. they always tell me that i go way to far into an explanation.. or .. when asked a question at school... i am told that i go too far in my answer... this upsets me greatly.... its like.. well.. yes.. the heart beats due to electrical activity.. but.. the sa node and the av node.. bundle of HIS and perjinke fibers..... and on and on and on.. people cant stand it when i elaborate.. they think i am trying to show how smart i am.. i already know i am smart.. they know i am smart.. i am not trying to show off.. i am just telling them the reasons behind what makes the electrical activity... and so on and so on.
no one cares to hear it. makes me feel like everyone else is really stupid. or that they dont care.. or that my feelings are nothing. this only gives me an impression of those around me..
when i know someone is bullshitting... i call them out.. i cant stand pretenders... i hate fakes.. i cant ignore them.. i have to call them out.. even in publiuc places.. i am very forward to a fault.. and i end up saying things i shouldnt.. but.. i cant help it.. i ts the truth.
anyway..LOL.. hope yopu are doing well..
I'm back from my break.
I can relate to a lot of the things said from both of you.
For one thing, next to no control over my emotions... If I get stuck in a crying spell I have to wait it out. I can't just think of other things and expect the crying to go away. When I was on Celexia, it made this much worse.
I need to understand things. I don't like to be left with an unresolved conflict. If things are left ambiguous, then I’m stuck spinning my wheels trying to figure it out.
I can't comprehend people who start out friendships with the desire to abandon the person whenever they feel like it. Even more so I can't comprehend why anyone would get any joy seeing another human suffer the pain of rejection or hurt. Those people sicken me and still do. It's like being in 3rd grade all over again. I get confused with ulterior motives and related... I don’t tend to spot it when someone is trying to use me until it’s too late.
I think straightforward and from the heart. For people to think I am pretending, baffles me. But I've had that happen and it burns.
Letting go of my feelings on the above... It takes me a very long time to forget. I forgive the people and hold no hard feelings against them. But I'm still stuck with the question, "Why?" "Why are these people like that?" I just don't get it one bit. I'd think in my mind that if someone has experienced the pain of rejection, they won't do it to other people. I would think that all humans would think like I do... There's that theory of mind deficit working against me. I just can’t understand the mindset of someone who could just dump friends like they are disposable. I’m not like that. I guess that’s another fault. I give out trust too freely. I trust too many people and then get my heart broken.
yeha wow.. i can relate to the whole too trusting.. its like this chip i wasnt born with or something.... and its funny.. because i get really paranoid as well.. its like..hmmm.. she seems like a really nice person.. but i bet she isnt.. ( insert chip here) oh..its ok .. trust her.. i bet shes great... then WHAM!
MJ i have NEVER thought about it that way.. you have shown me much insight!! I FORGIVE the people.. and hold no hard feelings.. but i am still stuck with WHY!!
i dotn forgive the people.. at least.. i thought that i didnt.. i always say.., how stupid can you be?? what they heck? are they that inept at intellectual thinking?
i feel sorry for people. in a way thats bad.. i look down on them.. because i feel alot of times that they are lower than i am .. not in a bad way.. but in a celestial you are not at my intellectual level only because you cannot reach inside your self and understand who are you are" kind of way.
alot of me i still dont understand.. and i find myself standing along with all the other humans. not because i want too.. but because i am .
i dotn know that anyone will ever truly "get" me.. not alot of people have.. and those that have sorta done so.. well.. they see me as something else..
i tend to intimidate alot of people. in school i have a huge problem with that... its not like i mean too.. its just that they need to wake up and pay attention.
do you guys feel like you are more perceptive? i know i am .. I am also VERY alert..of EVERYTHING.. and it feels like most around me are not at all..
With relationships, comes the pain. Wisdom is needed in making choices. This is something as your mother I could not just "give" you. I tried to encourage you to be open to helping others, praying for them, listening and learning.
You chose your path of communicating such as the neopets and now the medhelp forums. The fact you are doing this makes me feel proud.
The one thing as your mother I could never do is to make people accept your differences, nor can any parent in this forum or others.
However, we can reach out to educate others and help them to realize there are differences and that they don't have to be threatening.
I wrote to you about stop & starting things. I can remember when you were about 8 or so and I had my wisdom teeth taken out (all 4). I was in pain, you were in the car and demanded to know why I wasn't talking. You kept saying something like...whats the matter...don't you have a mouth!. I could hear you were getting upset and I was in pain. I realized you didn't understand.
If I could take that experience and help you to understand that what people write into these forums is coming from a deep place inside them for reasons of their own. We don't have their expressions or being able to sense more than words can say by being in their presence to go by ...communication wise. We are left with words and actions.
When action is blocking someone from communicating without an explanation...it is like closing the door. Closing the door leaves one guessing why the door is closed when it was open a short time before. Bless your heart, MJ, with your tendencies that have been there since you were little, you have a hard time letting go. What drives you, irritates others. You can now learn from this most recent experience to back off when people block you. If it is a mistake, they will let you know.
My concern has always been that someone will try take advantage of you. They don't know you like I do being your mother. This is a mother's fear. If I could have handed you a manual that you could memorize and know what to do in every situation, I would have done it....but it is impossible.
My hope is that you will learn to distinguish the difference between real and unreal, true and untrue. Many friendships are forged in time. Fast things blowing in, blow out fast too without any substance to maintain the relationship. As I shared with you before, relationships are complicated. Some people live off emotion. You stated to me that you didn't understand why someone would want to stay in a miserable place. I replied that repetition brings attention for them.
My hope in sharing this post is that other parents, male and female can enter into this and share ways they are teaching their children about relationships, etc. I have always looked to the parents of older children than me to pass on what worked or didn't work. We carry a torch so to speak, you and I and your Dad to share with others your accomplishments.
I wish I could write a book and take others on the journey we went with you as you blew away the predictions for you. I am grateful for all the input from others, teachers, parents, some good, some bad, articles, books, Temple Grandin!!!, Susan Moreno......the list goes on. You finished High School with a near 4.0 average, a National Honor Society Student, and in the top 10 percent. This was accomplished with much cooperation in the Public School System.
If I could take everyone back to your struggling in 5th & 6th grade especially with your teacher practically breaking down over not knowing how to deal with you. You were stuffing kleenexes into your nostrils and hitting your breasts because you didn't want to grow up. Your Dad got the educators involved with the need for education and we looked for the reasons why you were agitated and what could be done.
I wanted to share this glimpse into your life to make you more real to the others reading this. Especially those who would judge you without knowing what you personally have had to go through to be where you are now.
You, ARE an inspiration to me.
To add to what I just wrote:
I could not make you understand that you have to wait for replies. As your verbal skills grew and you wanted to talk, you wanted replies there on the spot. I couldn't always give answers as some things needed time to reflect on.
Maybe someone in this forum or coming into it can say it in a way that helps you connect the dots better.
I wanted to add a couple of funny things (although at the time, they were not) you along the way. One time when I didn't answer you on something, you said, "I'm not gonna put flowers on your grave". Where that came from, you got me.
I can remember the interesting way you used language as you began to work with words...like fingernail moon. You thought I was wearing red jeans when you were made because you have red hair. We were talking about genes....lol! You would refer to the roof as a "lid". You said you couldn't watch your head when we warned you about the trunk coming up, because you didn't have eyes on your head.
If I could tell other parents to enjoy and write these kinds of things down. That the frantic earlier years will lighten up as people work with your child(ren) and others learn to relax around them. It takes focus and energy....creativity. We can share our stories of survival and offer hope to others.
Bottom line of all of this is that I as a parent learned that it does take a village to raise a child.
It is good you are seeking to understand more about Aspergers. At one point when I became aware of it, I thought MJ was more like Aspergers, but she was not diagnosed with it as she did not have language before 3. She had and has the perseverance about insects which later in her teen years blossomed into plants. She lives in a jungle. At home, my basement still has 20 plus plants I have kept alive while she has been living away from home. In fact, if you saw the basement with all the stuff she left all over......
My understanding of Aspergers like with Autism is that relationships will ALWAYS be difficult since there isn't an intuitive understanding of how to do things...when to speak (pause) and share thoughts, etc. I noticed MJ's impatience with talking. She felt she would lose the thought if she didn't get it out. I admit I wasn't always patient with her. I could beat myself up with all the "failures" or " I should have done this/that"....but I would rather encourage others to learn from my ignorance or hard won knowledge.
I struggled with others views that MJ looked normal therefore should act normal. She would run up to strangers and want to take them home. This happened when I took her to garage sales or to the mall. If visitors came to my home, she would have them looking at her drawings and later, plants, etc. It became somewhat embarassing to me especially when I saw people were uncomfortable with knowing what to do.
We would focus on "staying on task". The first years were spent mostly in her own world. I tried to bring girls over to play with her, but she would have them hold something and run off to the field across our home to play with the bugs (dig up ant nests, etc.). I quit finally when I was left taking Barbie Doll things apart and playing with a nine year old Rebecca.... while MJ was hanging hot wheel cars on strings on the curtain rod. My dreams die hard!!!
Autism, Aspergers.......it is a journey like none other. What could prepare us????
Acceptance, tolerance ...a willingness to understand that it is difference. What is he or she thinking when unable to communicate??? Why is he/she biting him/herself? Let's keep asking the questions and seeking the answers. Then we can try this or that, record the successes and pat each other on the back!!!
I am glad this forum and the others are there to be bridges to somewhere.
Now I am on a roll. Here it is, my day off and I should be taking a shower so I can go out and take care of personal business.....lots of errands, etc. (list to do's). However, I am here. MJ drew me here. I am so proud of her having a heart to want to care. I can remember once at church, when she was about 16 or so, I saw she had been crying (red eyes) and was fighting against continuing to do so. I asked her what was wrong. She said she had wanted to sit down but a girl told her not to sit in the chair by her because it was for someone else she was waiting for.
Who was this girl kidding? MJ and I both knew that MJ was being rejected. I couldn't pretend and say all sorts of ____ to smooth it over, so I just said what came to mind. I hugged her and said, you have a heart! It is a good thing to have a heart.
I am left now thinking of this as MJ has just gone through being accused of being a stalker, etc.
Part of me was angry with the "How dare they!!!!" Part of me grieved for what she has and will go through in life being on autism spectrum. Part of me wants to laugh. Could they see her like me, child-like...she doesn't smoke, swear or even have a boyfriend....hah! I can hear her in my mind's ears saying...What about my one thing when we would go to stores. MJ a stalker, a looney?????? NO WAY!!!!!
I have been a philosophical soul since I was a child, asking questions no one could answer. I believed as child that when I died and everyone who knew me died, it would be as if I didn't exist. Now, many years later, I realize that we leave "legacies". We build things that are tributes to who we were and what we did. We influence those around us. A child's perspective is limited. I still say, though, that we are like children playing at being adults as we live for such a short time.
Therefore, it is all the more important what we do with our time. I wanted MJ to know that to care is worthwhile. Even if it doesn't seem to accomplish anything.
Her brand of caring is important. She is more than someone caring what happened to the bee that bothered the person in the car. Sometimes with autism, the order is different. Maybe the attention being drawn to the bee first before the person serves its purpose? What about someone caring that the animals are saved in the hurricanes? Who would help their survival if ALL the focus was on the humans?
We need to step outside the box.
thanks for answering, i am going to print it out and read it tonight
my youngest son is home sick, i need to get him to the doctors,
i do appreciate you all taking time out to post, i have lived with this for so many years, but i never talked about it with anyone
Omg...wow you sure posted a few of my embarrassing moments. *blush* I'm laughing right now out of awkwardness for the note about the stuff I did when I was 11-12 years old and younger. Some of those things I don't remember. Others I forgot and now you resparked those memories.
I thank you for your support though. I vaguely remember telling you about not putting flowers on your grave, but I don't remember where I got that line from either... I'm thinking I echoed something I heard on tv once and that line felt approrpriate to use at the time? I wish I could go back in time and give you the real reason on that one. Mystery to me as well, lol.
I guess that's part of the ups and downs of autism... I really hope that people do take time to read through this thread.
This sunday I was at an adult forum at our church. The speaker was discussing autism and her two children. Some things that I remember: She said if you want your child to do something, make that the last line in your list. That's all they tend to remember with verbal directions. I guess with me sometimes it's the first, sometimes the last, sometimes don't remember anything. That's why it is important to break things down into steps. I tell people, let me finish the first task, then you can tell me the next one.
She also talked about it being a social disorder. Other things she mentioned was the strengths she notices with her children. One is an excellent at memorizing books and can spell words perrfectly. Another is great at music. The child can hear a tune and just play it for the first time without any refrence. It was a pretty good discussion. I was glad to be there and help add to her points. I gave the speaker my email and hoe that she will contact me. If anything one of my desires is to do more real life autism advocacy.
I mean *hope*... I didn't bother to spell check my post for typos... I should have.
I wanted to be real and give a glimpse of what you have had to go through. It wasn't easy for you and neither was it for your dad and I, but involvement of others along the way is what got us through it. You had the spark to move forward and reach for things many others would have not expected you to achieve. It is by opening ourselves to truth that we grow.
Some of the toughest times parenting you were when you wanted to give up on yourself and when others rejected you. I knew from my own personal experience that I had lacked the support when I was growing up and so wanted to give what I could and what I lacked. Wisdom told me that it was important to open up to others being involved in your life...hence the "global village". Those were valuable lessons and certainly a great debt of gratitude goes to your grandma. There was the kindness of your art teacher who went the extra mile who we nominated for the teacher award with the autism society. The school psychologist...that is why I say the list is long!!!
Your grandma has a heart bigger than a mountain and deeper than the sea. She has been the epitomy of what God meant to love others.
My hope is that the focus will be on what each of us can do by the choices made, forgive ourselves when we fall short and get back in there and try again.