so my doctor

So the doctor tells me today, you should make an end of life arrangements.  While you still can. while you are of sound mind.  im like ok...with a special needs child...that is no easy thought.  these are no easy arrangements.  If I die, my daughter would go back to my ex spouse. the other parent who was abusive. the other parent who isolated us, the other parent who would turn our world upside down on a dime. the person who went into fits of rage if her things were touched.  the person i would beg and beg for hours right up until fifteen minutes before we were set to leave to go to my brothers to please let us all go. the same person my daughter is scared to be left alone with.   my ex will sign off complete custody. No more shared custody   My daughter is the one and only gift I have  received in my life that i have that is most cherished.  she is pure love. she is the result of every hope and every dream i have ever had since i could remember such things.  thinking now that i have to figure out an end of life plan....where she should go and how.... where????  no wants her.  no like literally.  so i cant die.no matter how bad my depression gets, no matter how bad my anxieties become, no matter the autoimmune disorder gets.....i can't leave this earth. 

ALONE

I am alone. I am scared.  I have never been so scared in my life before.  I am far from anything I know.  People here are duplicitous.  I cant trust anyone.  I have my daughter to look out for.  I have no one.  This is as bad as it gets.  I am on my knees.  I can't do this.  There is no way possible.  I don't see any options.  There is no end of the tunnel. There is no light.  What i thought I had I do not. What i thought I could do I can't.  Every door I thought there was there is not.  Every thing I thought I had is gone.  Everything I thought I could count on left.  My voice has left.  I am sick.  

Sometimes.... Ok.... sometimes not .

    

Sometimes it is to hard to leave.
And no one can understand that.
Walking outside that doorway...
Too many reasons to stay inside.
Way to many.
My mind goes in circles
It races at the thought of leaving alone
It starts the night before...
Then I can't sleep
Then the pacing starts....I can't sit still.
If by some miracle I get to work I'm consumed in anxiety...
I watch the clock counting down the minutes till I get to leave
Till I can return home where i can close the door
And wait, wait till I can see my family and gather them around me again
I don't think anyone can possibly understand how those feels

aspergers high functioning autism

What we have we have learned after the diagnosis of ASpergers (AS)/ High Functioning Autism (HFA)

What To Expect After The Diagnosis

Most of the time, AS/HFA is diagnosed by a developmental doctor, neurologist, psychologist, or team of professionals. The diagnosis is made on the basis of behaviors, delays, and language deficits. That means that no one can diagnose Aspergers in an infant, and unless your youngster has Rett syndrome or Fragile X, no medical test can "prove" that a youngster truly has Aspergers.

Most of the time they will walk away with additional diagnoses such as "social anxiety" or "non-verbal learning disorder.", sensory dysfunction, selective mutism. All of these are descriptive of your youngster's behaviors, and different diagnosticians may give different labels depending on their experience and preference.

What you as the parent can expect from you child’s physician after the diagnosis:

1. Your physician may offer suggestions for treatment. He may support your suggestions for additional treatments. But don't expect your physician to have any idea how you are supposed to pay for those treatments. While some may, in fact, be covered under insurance and/or early intervention programs, it's rare to find a physician who can guide you through that maze. Or you may be referred back to your school district for services.

2. You'll wonder whether you should press to have your youngster included in typical classrooms, provided with a special class, or educated privately. Since every youngster, school, classroom and program is different -- and since physicians have never seen your youngster in a group setting -- reputable physicians will rarely recommend specific educational setting for your youngster.

3. Your physician can't tell you for sure which treatments will work for your youngster. He may recommend a particular diet, supplement, or treatment program. But until you try it, there's no way to know whether it will work for your individual son or daughter.

4. Unless your youngster has Fragile X or Rett syndrome (both of which can be identified through genetic markers), your doctor will not know why your youngster has Aspergers. Depending on his leanings, you may hear words like "genetics," "vaccines," or "inflammation." But the truth is that no physician has enough information to reliably explain the factors that lie behind your youngster's diagnosis.

5. Most of you will ask questions (e.g., “Will my youngster get better?”). Most reputable physicians will respond with vague answers – or even no answer at all. That's because no one really knows how far your Aspergers youngster will develop, and even kids with profound disabilities can amaze moms and dads and professionals with their developmental leaps.

6. While some physicians may recommend specific biomedical treatments, neither they nor any other medical professional can tell you which of the many available non-medical treatments will be best for your youngster. They may suggest applied behavior analysis (ABA) based on a general understanding that ABA is well-researched. But no expert can tell you whether ABA is a better choice than, say, cognitive behavioral therapy (CBT).

What ABA involves:

Done correctly, ABA intervention for Aspergers is not a "one size fits all" approach consisting of a "canned" set of programs or drills. On the contrary, every aspect of intervention is customized to each child's skills, needs, interests, preferences, and family situation. For those reasons, an ABA program for one child might look somewhat different than a program for another child. But genuine, comprehensive ABA programs for Aspergers children have certain things in common:

Abundant positive reinforcement for useful skills and socially appropriate behaviors

An emphasis on positive social interactions, and on making learning fun

An emphasis on skills that will enable Aspergers children to be independent and successful in both the short and the long run

Detailed assessment of each Aspergers child's skills as well as child and family preferences to determine initial treatment goals

Frequent review of progress data by the behavior analyst so that goals and procedures can be "fine tuned" as needed

Instruction on developmentally appropriate goals in skill areas (e.g., communication, social, self-care, play and leisure, motor, and academic skills)

Intervention designed and overseen directly by qualified, well-trained professional behavior analysts

Intervention provided consistently for many hours each week

Many opportunities - specifically planned and naturally occurring - for each child to acquire and practice skills every day, in structured and unstructured situations

No reinforcement for behaviors that are harmful or prevent learning

Ongoing objective measurement of child progress

Parent training so family members can teach and support skills during typical family activities

Regular meetings between family members and program staff to plan, review progress, and make adjustments

Selection of goals that are meaningful for the Aspergers child and the family

Skills broken down into small parts or steps that are manageable for the child, and taught from simple to complex

Use of multiple behavior analytic procedures - both adult-directed and child-initiated - to promote learning in a variety of ways

Use of techniques to help trained skills carry over to various places, people, and times, and to enable Aspergers children to acquire new skills in a variety of settings

Competently delivered ABA intervention can help Aspergers children make meaningful changes in many areas. Quality ABA programs address a wide range of skill areas, but the focus is always on the individual child, so goals vary from child to child, depending on age, level of functioning, family needs and interests, and other factors. The rate of progress also varies from one child to the next. Some acquire skills quickly, others more slowly. In fact, an individual child may make rapid progress in one skill area (e.g., Math), but need much more instruction and practice to master another (e.g., interacting with peers).

What CBT involves:

Children on the autism spectrum can be prone to depression, anxiety, obsessive-compulsive disorders and other mental health issues. CBT is one of a range of treatment options. It is a psychotherapy based on modifying everyday thoughts and behaviors, with the aim of positively influencing emotions. The particular therapeutic techniques vary according to the particular child or issue, but commonly include keeping a diary of significant events and associated feelings, thoughts and behaviors; questioning and testing assumptions or habits of thoughts that might be unhelpful and unrealistic; gradually facing activities which may have been avoided; and trying out new ways of behaving and reacting.

Relaxation and distraction techniques are also commonly included. CBT is widely accepted as an evidence-based, cost-effective psychotherapy for many Aspergers. It is sometimes used with groups as well as individuals, and the techniques are also commonly adapted for self-help manuals and, increasingly, for self-help software packages.

CBT is based on the idea that how we think (cognition), how we feel (emotion) and how we act (behavior) interact together. Specifically, our thoughts determine our feelings and our behavior. Therefore, negative - and unrealistic - thoughts can cause us distress and result in problems. One example could be a child who, after frequent bullying and failed attempts at making friends, thinks "Nobody likes me." This will impact negatively on mood, making the child feel depressed; the problem may be worsened if the child reacts by avoiding social activities all together. As a result, a successful experience becomes more unlikely, which reinforces the original thought of being "hated."

In therapy, this example could be identified as a self-fulfilling prophecy or "problem cycle," and the efforts of the therapist and the Aspergers child/teen would be directed at working together to change this. This is done by addressing the way the child/teen thinks in response to similar situations and by developing more flexible thought patterns, along with reducing the avoidance of social activities. If, as a result, the child/teen escapes the negative thought pattern, the feelings of depression may be relieved. The child/teen may then become more active, succeed more often, and further reduce feelings of depression and anxiety.

The Bottom Line:

Even today, Aspergers is a mystery. No one really knows for sure what causes it, what cures it, or even what it is. Some physicians will give you their opinion. But the moment you start digging deeper, you'll find that there are many other well-supported opinions out there. This doesn't mean your physician can't help at all, but it does mean that you'll have to look elsewhere for direction as you think through treatment options, educational settings, behavior management and other issues. For example:

Aspergers conferences, which are now held all around the world

Books (check carefully to be sure you know who the author is and whether he or she has a particular ax to grind)

Parent support groups, which offer a wealth of experience in areas ranging from therapies and therapists to schools and school programs

Regional centers, which offer a range of services and treatment options

School-based parent education programs

The Internet

In the long run, for better or for worse, you will be making many decisions based on your own parental perspective, knowledge, preferences and comfort level. Of course, that's the case for most parenting decisions, and it seems to be the case that when moms and dads are engaged in the process of helping and working with their Aspergers youngster, outcomes are improved over time.

The Complete Guide to Teaching Students with Aspergers and High-Functioning Autism by Mark Hutten Great book check it out.

Decisions

I recently decided to get a semicolon tattoo. Not because it's trendy (though, it certainly seems to be at the moment), but because it's a reminder of the things I've overcome in my life. I've dealt with anxiety, depression for the better part of my life, and at times, that led me down a path that included self-harm and suicide attempts. 
But here I am, years later, finally fitting the pieces of my life together in a way I never thought they could before. The semicolon (and the message that goes along with it) is a reminder that I've faced dark times, but I'm still here.  So when I can afford to ilk get the semi colon. 

http://www.cuded.com/wp-content/uploads/2016/05/semicolon-tattoo-23.jpghttp://www.cuded.com/wp-content/uploads/2016/05/semicolon-tattoo-23.jpg

Decisions

I recently decided to get a semicolon tattoo. Not because it's trendy (though, it certainly seems to be at the moment), but because it's a reminder of the things I've overcome in my life. I've dealt with anxiety, depression, and gender dysphoria for the better part of my life, and at times, that led me down a path that included self-harm and suicide attempts. 
But here I am, years later, finally fitting the pieces of my life together in a way I never thought they could before. The semicolon (and the message that goes along with it) is a reminder that I've faced dark times, but I'm still here.  So when I can afford to ilk get the semi colon. 

http://www.cuded.com/wp-content/uploads/2016/05/semicolon-tattoo-23.jpghttp://www.cuded.com/wp-content/uploads/2016/05/semicolon-tattoo-23.jpg

Learned

I learned at a very young age I would not measure up. I was nothing like my brother. I would never be smart enough to make it through college. No matter what I did as a child I would never be able to make them proud or happy. I would hear them tout on my brothers accomplishments as a child straight through to adulthood. He could do no wrong. All I ever did was wrong. Anytime something went wrong in my home it was always my fault, No questions asked. No open ears. Judgment passed. Sentence given. Punishment administered. And it was always harsh. Always. Swift and unrelenting. It was incredibly painful. I have kept my fear of school and fear of failing at it from continuing my education. I have not completed my degree. I need to figure out how to get pass that. 

Beyond that my relationship with my brother...I can’t be myself around him. I know I can’t measure up. I know no matter what I do it won't be enough. Then worse yet. This transferred to others...others that I love. I’m afraid to relax and be myself...fear of being rejected. What if she doesn’t like the real me. The process is very painful. I want to put everything away in a box. Each and every single thing in its own box. Bury it. Never look at it again. I want it to be done now. I don’t want it to be drawn it. Things from my childhood. Things from my previous marriage. All of it. Just done and buried. Is that too much to ask? I just want to focus on here and now. I may not ever want to be alone. I may not ever be the type of person who dines out at a restaurant by herself. But maybe someday the nightmares will go away and maybe someday I will not see images flash before my eyes of my past. I want to believe in my strength and in my ability to persevere. I want to believe that no matter what in the end finding that peace resides in the mind, and that love lives in the heart.