Aspie fighting for independence-is she ready?

My daughter is 18 years old, a rising senior, and as far as I can tell unable to handle the responsibilities of an adult.  Part of this is my fault, and I take full responsibility for it.  I failed in my duties as a parent to teach her how to do things around the house, cook a meal, balance a checkbook and handle money and generally to be a fully functioning member of adult society (when she was ready).

I did teach her to drive, but that was only because she wanted to so badly.  I should have held off on this until she was willing to master the other.  From the time she was two years old, discipline has been difficult.  She didn’t respond to spanking, time-outs or having precious treasures removed for a short time.  No matter what I did, she would look at me defiantly and say, “I don’t care what you do to me. I’m not going to change.”  How does a parent respond to that?  I was a single parent at the time.  I had no one to reinforce what I was doing.  So, it didn’t take long for me to just give up.

When I remarried, it didn’t take long for my husband and my daughter to butt heads and words.  Even after 5 1/2 years, they still seem to despise each other.  I truly thought they would come to an agreement, but I was very mistaken.  Guess who, again, is caught between a rock and a hard place.  How do you live in a house with people you love very much who dislike each other?  Myself, I am slowly going insane.

Now that she is 18 she believes she can do whatever she wants to do without permission, without following through with responsibility and without concern for others.  Nevertheless, she is living in my house, driving my car and eating my food.  She is living like a queen doing no laundry, no cleaning and no working of any kind to support her computer habit, music habit and any other fun habit she feels entitled to.  Yes, again, I totally admit this is my fault.  She has lost all respect for me, but I don’t think she ever had any.  I could ask where did I go wrong, but I know.  I failed her as a mother.

I have no idea how to fix it.  She demonstrates affection for everyone but me and, at times, tells me she hates me (something all teenagers do, but when she says it you can see the sincerity).  She is constantly telling everyone how embarrassed she is of me. 

I am seeing things more clearly today than I did 16 years ago.  I sometimes wish I could go back and do things differently, but I’m not sure it would have made any difference.  Maybe, in time, she will come to discover the true meaning of being an adult.  Until then, I am praying for a miracle.

(Note to readers:  I love my daughter.  I have tried to explain Asperger Syndrome to her; however, she is in denial and refuses to claim this diagnosis.  This could be a good thing–only time will tell.  She can be a very pleasant person, but she can also be very hateful and mean.  I wish I knew how to explain this. I apologize for what seems like a post full of complaining–it is my intention to let others who may be going through a similar situation know that they are not alone.)

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William Stillman redefines the autistic experience in “Autism and the God Connection”

In his introduction, William Stillman asks his readers who are unfamiliar with autism and autism-spectrum disorders to always presume intellect when meeting someone who is autistic.  For a long time, autistic children and adults have been labeled mentally retarded or deficient when, in fact, they are very bright.  He states, “…any one of us would fail an Intelligence Quotient examination if we were without speech, and given no advance knowledge of what to expect.  Think if you were completely unprepared; a total strange administered the test in an unfamiliar or uncomfortable environment; and you were being asked to comply with odd, purposeless, or demeaning tasks never before requested of you.  Such is the fate of many that have been diagnosed as autistic.” (p. 25).  

Given the title of the book, you would believe it would be primarily about a divine experience between the child and God, and, to a large extent, it is.  It covers a variety of experiences relayed to Stillman through parental accounts as well as those of the autistic person.  Revelations, spiritual encounters and angelic protectors are mentioned and are discussed in part two of the book.  There is also a chapter on ghost-like experiences.  

Whether or not you are open to such experiences, this book does have something to offer in terms of teaching acceptance of children and adults with autism-spectrum disorders and a confirmation for parents and caregivers.  In a world dominated by increasing global concerns, economic downturns, cancer and other diseases, children with autism have been forgotten and overlooked, and it is Stillman’s opinion that the exponential increase in autism diagnoses is “our Creator’s purposeful plan to refocus on the importance of reverence for all of humanity.” (p. 39).

 Stillman’s book answered one of my long unanswered questions regarding my own child as I tried to figure out why my child would explode at home or in our presence when she had perfect behavior everywhere else and with others.  His explanation is that playing and interacting with others is work for them.  “This is why kids come home from school and totally melt down, prompting teachers to say, ‘but she’s fine during the day!’”  He continues, “Kids who ‘hold it together’ during the day and then melt down at home have a tremendous, unrecognized strength.” (p. 99).  

As a final note, he briefly covered another topic which is a hot topic among parents and caregivers of children with autism-spectrum disorders—the issue of curing the autistic child.  Raising a child with autism is difficult and emotionally draining.  Not only do you have to deal with the child’s behavior, the quirks and the meltdowns, you also have to deal with the attitudes of family, friends and strangers.  When you put it all together, finding a cure seems easier; however, God created your child exactly the way he/she is whether they are a healthy neuro-typical child or a child with autism.  Maybe that is the God connection we are looking for. 

William Stillman is a writer with Asperger’s Syndrome and a noted speaker.  He is the founder of the Pennsylvania Autism Self-Advocacy Coalition and is on advisory boards of several autism organizations.  You can get more information on his website at www.williamstillman.com.

Disclaimer:  This book was not provided to me for this review.

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Preparing for a trip

My daughter is getting ready for a church youth trip.  She has spent months anticipating the trip with excitement and I have spent months anticipating it with anxiety almost to the point of having a nervous breakdown.  Will she remember to take her medication?  Will she have a meltdown with the youth leaders and chaperones?  Will they know what to do?  

What further raises the anxiety level this time is that they are flying.  She used to enjoy flying but when they changed the procedures after 911 it has become very stressful for her.  Just the fact that she has to take off her shoes going through security is cause for alarm.  Is airport security adequately trained for this? Hopefully, just like all the other times, there will be no problems. 

This trip is a spiritual journey and they are banned from taking any electronic device–no cellphone, no Ipod, etc.  I’m surprised we didn’t have to have these items surgically removed from her ear nevermind that they are a comfort to her during meltdowns.   Not to mention that I will not be able to contact my child for 160 hours–that’s 6.5 days to “normal” people.  I may have to be sedated.

The most important thing about travelling without a parent is remembering to pack everything especially her medication.  It is also imperative we go over basic rules of decorum, not that she will remember any of them but it never hurts.  We also discuss every possible scenario that may create a change in routine–cancelled flights, schedule changes and food selection.  I always send her favorite poptarts (just in case).

When it’s all over, she will have had a good time and I will be exhausted, but we will both have learned that we can do this–at least until the next time.

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To medicate or not to medicate…

Let me start out by saying this is a decision best left to you and your doctor.  These are my reasons for making the choice I made at the time and maybe what I would have done differently.

By the time my daughter was diagnosed I was almost crazy from regretting life decisions I had made that may have contributed to her behavior to trying to figure out how to take control and make our lives better.  I had worked with teachers who either truly believed my daughter was fine or who just didn’t want to get involved; however, they were urging me to turn in her homework and raise her grades (because they knew she could do it).   These same teachers who called me practically daily to let me know she had not turned in her homework were the same teachers who would respond on the therapist’s questionnaire that she rarely forgot her homework.  

It seemed like I was spending more time at the school for parent-teacher conferences than I was at work.  I was dealing with temper tantrums at restaurants, in grocery stores and friend’s homes.  I felt like people were judging me by my daughter’s behavior and lack of consideration for others.  I was beginning to feel like the most inept parent on the face of the earth. 

So when I finally found a therapist who knew what was wrong and offered help through medication, I jumped on the bandwagon (quite possibly a little too quickly).   In addition to the Asperger diagnosis, he diagnosed her with Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive Compulsive Disorder (OCD).  He treated her with medication for each.   Several years later, he added an additional medication to help with her appetite/weight loss and sleep deprivation.  I’m sure any normal parent would have done research on the meds and looked at all the pros and cons, but as I said earlier I was at the end of my proverbial rope. 

If you have not decided on medication yet, my advice is to do research.  Find out what the side effects are and, most importantly, if there will be any problems when and if you decide to quit administering them.  Make sure you find out how much the drug will cost, whether insurance will pay and if there is a generic/alternate form which may be less expensive.  Find out what the doctor will do for your child when it’s time to take them off the medication. 

I wish I had taken the time to do what I’m advising others to do.  I can’t say I wouldn’t have continued with them.  My daughter’s grades improved with the use of medication.  She didn’t always remember her homework, but at least it was an infrequent event.  She is definitely more pleasant after she takes her medicine.  I can always tell if she’s forgotten to take it, and I pity the people who have to deal with her when she forgets. 

Click here for an online A-Z drug list.

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Welcome to the world of an Aspie parent

I am the parent of a daughter with Asperger Syndrome (AS), a neurobiological disorder affecting several areas of one’s development. Commonly referred to as a form of “high-functioning” autism, Asperger Syndrome is a hidden disability because you cannot tell someone has it from their outward appearance. Individuals with Asperger’s (affectionately called Aspies) are considered to have a higher intellectual capacity while suffering from a lower social capacity. 

My daughter did not talk until she was three years old and even then she spoke in simple words.  She communicated by pointing and grunting and I just instinctively knew what she wanted.  As a first-time parent (and a single mother), I did not want to admit that something may be wrong and when she finally started talking help did not seem warranted.  I knew that she was “different”, but I had no idea these differences were anything more than a unique personality trait.  I would tell people all of the time, “she sees the world differently than we do.”  She took everything literally–from having “eyes in the back of your head” to “two heads are better than one” and not understanding phrases such as “what goes around comes around” or “going with the flow.” 

Even as a baby, she struggled with change.  She loved structure and doing the same thing everyday.  I had already gotten in the habit of telling her every day what we were going to be doing.  Early on she became obsessed with weather and would watch the Weather Channel like most children her age watched cartoons.  As she has gotten older, music and theater have taken over her interest.  Even at the early elementary, she struggled with certain subjects but none so much as just living in a world so different from the one she thought she lived in.

After years of struggling for answers from pediatricians, psychologists, neurologists and finally a child psychiatrist, my daughter was finally diagnosed with Asperger Syndrome when she was 12 years old.  At this age and after being in a mainstream school environment for all of her elementary school years, public schools were reluctant to offer help.  She went from public school to a private school and back to public school.  With the help of a private tutor, she has managed to stay afloat in school.   I am convinced that next year she will graduate from high school.  I am not convinced, however, that she will be able to handle college.  I am going to face that battle when she gets to it.

Click here for a link to take the Autism Spectrum Quotient (AQ).   (Disclaimer: It is not measurement for diagnosis).

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