Raves, Rants, and Ramblings

Sunday, 08 November 2009

  • Saying Good Bye

         Since my son was diagnosed with Autism 12 years ago, I have witnessed many changes in the Autism community. Some of the changes seem great, such as self advocacy (until those self advocates start trying to speak for everyone), increased awareness, and increased funding for research.  Some of the changes don't sit well with me at all, such as the camps/cliques, politics, and the shunning of those who have experience loving, raising, and/or caring for someone with Autism.

         I was there when the rates were 1 in 10,000.  I was there when ABA therapists had no central training or certification (it is a bit better now), when Secretin was the new "miracle" cure, when the Feingold Diet reigned supreme, and when far too many people pronounced it "artism" and were only connected via "Rainman".  I was there when DMG and megavitamin therapy were just getting started and when the majority of those diagnosed with Autism were considered to have Classic Autism  (today, only 17% of those on the spectrum are diagnosed with Classic/Kanner's/ Infantile Autism).

         Fortunately, I was just getting my feet wet when parents were still more concerned with getting their children the help they needed than finding someone or something to blame.  The term "person first" wasn't even around, yet we were putting people first by not playing politics with our children.  I am especially glad I was there when parents were free to feel sad, afraid, or angry and could proudly proclaim that we wish for our children to be able to live independent lives and make their own decisions regarding career, housing, food, clothing, and recreation...we call that ability to make those decisions a "cure".  Today we are made to feel ashamed for wanting such things for our children.  We are told that we should proudly accept that our child will never be able to do those things and to wish for such is to not love our child.

         Today, parents are picking sides and celebrities.  Vaccines/Genetics, person with autism or autistic person, funding for research or funding for services, Behavioral or biomedical, western or holistic, cure/accept are all cliques/camps that parents must join.  I was recently told that my experience is basically worthless because my son was diagnosed over a decade ago.  Yes, that is right...I have no idea what I am talking about because I have experience!  I must have stopped reading anything a few years after my son was diagnosed.  I can't possibly be up on the new treatments because my son's diagnosis is so old.  It is enough to make my head spin.  It is enough to make me angry.  It is enough to make me walk away.

         I no longer wish to wrap up my parental identity with the word Autism.  Instead of a parent of a child with Autism, I am going to try being a plain old parent for awhile.  I can have faith in science and hope in a miracle at the same time.  I can believe in a genetic weakness with an environmental trigger.  I can question the vaccine schedule without blaming vaccines, doctors, or drug companies.  I can love my son and still want him to be able to make his own decisions in life.  I can support funding for education, medical treatment, research, services, and adult care all at the same time.  I can use behavioral and drug therapy without giving a rat's arse what anyone thinks of me.  I can do all of this because I have experience, because I stay current on science, and because I love my son with every fiber of my being. 

         So I am saying goodbye to the politics of Autism.  I am saying goodbye to those who need to point fingers.  I saying goodbye to those who point a finger with no science to back up that finger.  I am saying "Go f*ck yourself" to everyone who dares to question my love for my son. 

         Good bye cliques, Good by politics.  Hello, Alex and Leyla!

Saturday, 17 October 2009

  • Why I will....

         There is such a ruckus over the H1N1 flu virus vaccine, especially in the autism community.  Now, I am fully aware of the controversy and the reasons behind it.  I respect every parent's right to decide this issue for themselves and and their family.  However, since many anti-vaccine people have shared their feelings...I feel that I should be able to share my own.

         When I first learned of the virus, I was worried.  People were dying in Mexico and it was unclear just how many deaths could be linked to the virus.  When it hit the USA, it seemed there were fewer deaths.  I felt that my family would skip a vaccine since we have never gotten one for seasonal flu.  However, I began to reconsider when I did further research.  The H1N1 virus has visited us before and it killed an estimated 40-50 million people worldwide.  This new strain started off as though it was weaker.  However, I learned that new flu strains kill fewer people when it starts in the off season while coming back with a punch during regular flu season.

         It has been six months since the H1N1 virus entered the United States of America.  We have learned that some people are at a greater risk of death from this virus.  We know that it is killing children more than adults.  We know that people with neuro-developmental disorders (especially seizure disorders) are at a higher risk.  We also know that being overweight or obese is another risk factor.

         My son attends school with other developmentally disabled children.  I would bet that at least half of those students have parents who are anti-vaccine.  All of the kids are on the severe end of the Autism spectrum and have poor hygiene skills.  Most of the parents would rather send their children to school sick either because they can't take a sick day or simply don't wish to spend the day at home caring for their child. I can't say how many times I have heard parents say, "Well he probably got at school anyway" or "Well, the other students have already been exposed".  My son also hits three major risk factors.  His age, developmental disability, and weight make it very risky for him should he catch the virus. 

         After many discussions, my husband and I have decided that we will be vaccinated along with our son.  We have not made a decision regarding our 6 month old daughter, Leyla.  If we decide against vaccinating her, I will wean her from the breast if I get vaccinated.

          The decision we have come to is a personal one based on our research and our family lifestyle. I have no desire to debate the issue, so if you are anti-vaccine or "green our vaccines"...good for you but please respect my family's right to make our own decisions just as we respect your right to do the same. 

Saturday, 19 September 2009

  • Mommy Dearest

        Mommy Dearest said she had a plan.  She was going to be there for the birth of my sister's baby.  Then, two weeks later she was going to fly here to visit with us and our new baby.  Shortly after that, she was going to fly to Texas to see my brother's step son graduate high school.  Can I just say that my mom didn't even stay for my whole graduation ceremony and it was just a 20 minute drive from her house?

         I got a call a few days before Leyla was born.  Mommy Dearest had to buy a laptop because her desktop broke and the laptop would allow her to "visit all the grand kids" more often.  I asked if this purchase would put a damper on her plans to travel for all three celebrations and she said it probably would.  Poor Mommy Dearest could only find time and money to visit my brother and sister. 

         In July, my husband and I ran into a bit of a financial crisis of our own.  Mommy Dearest volunteered to pay a small bill for us.  It killed me to take her money.  Of course, after she paid the bill she offered up this little Gem...I was going to come see you next week but since you need this money..it will have to wait.  Funny how MD never even mentioned a visit until this point.

         Earlier this month, she calls up to say she wants to visit for my birthday.  Stupid me.  My head told me but my heart had hope.  Last weekend, MD calls to let me know exactly which flights she planned to take and what she wanted to do while she was here.  I suggested that she take an earlier flight because she has to work that evening (tele-commutes) and if her plane is even a few minutes late or if traffic is bad she might not make it here in time to clock in.  I did some checking and the earlier flight would give her plenty of time and it would cost the same.  Mommy Dearest said she would call me back when she bought the tickets.  As of yesterday, no tickets.  It seems the earlier flight has a two hour lay over and that is just not acceptable to her.  Mommy Dearest is still pretending she plans to visit but there are no tickets in her name.  Apparently, holding Leyla and playing with Alex isn't worth a two hour lay over.

         Mommy Dearest once told me something she disliked about her own mother.  It seems Grandma Dearest never liked the father of a grandson so she would not love the grandson.  No matter what C. did for her, he and his children barely registered on her existence meter.  Funny thing...Mommy Dearest does the same thing to me and my kids.  She hates my father and resents my existence.  My mom also loved to bring up how my father blamed his mom for the Vietnam War.  Funny thing...my mom blames me for something my brother did.

         Mommy Dearest has said thousands of times that she hates "mind games".  Well, I don't understand why.  She is the Supreme Queen and Champion of the mind game. 

         She will never change.  If my near death while having Leyla didn't spark anything in her, nothing will.  I have choices.  I can love her and let her continue to torture me with her games while telling myself that she loves me the only way she can...from a distance.  I can also remove myself from the torture by walking away.  Both choices suck and both will hurt me and my children.  Neither choice will upset my mom's delusions.

        

Thursday, 03 September 2009

  • Currently
    The Story of Layla & Majnun
    By Nizami
    see related

    Busy and Exhuasted Bee

         It is a new school year and while Alex is in the same class with the same teacher and one on one aide, his attitude is a bit different.  He is finishing up his second week and everyone is reporting that Alex has been jolly.  Most of his days have been considered "excellent".  His bus driver says he is "awesome".  Of course, I think she is still kissing my butt after having been caught being an uber bitch to my son.  We found a new psychiatrist for Alex and will be giving him an audition next week.  

         Leyla was doing great until recently.  She had spent roughly six weeks going to bed around the same time and sleeping from 5-7 hours then waking for a snack before going back to sleep for another 3-4 hours.  She even slept through the night once.  Oddly, on the same day that Alex returned to school...she regressed from out of nowhere.  She is exhausted and impossible to please.  She wasn't napping for more than 20 minutes here and there and she was going to bed two hours later and waking every 1.5 to 3 hours.  She napped a little longer today and went to bed earlier than ever.  I am keeping data on her feeding/sleeping/cranky activity.  If it is one thing that having Alex has taught me, it is that data keeping is a great way to notice real trends.  Study after study has shown that human memory is extremely subjective.  We rarely say exactly what we thought we said and even eye witnesses in criminal cases has shown to be less than stellar in accuracy.  I still feel awful.  It is heartbreaking when you can't provide needed comfort to your kids. It can also get extremely frustrating.  Even adults need positive reinforcement and I am not feeling it right now from anyone in this house. 

         In line with what is going on in the lives of my kids (Gee, I do love being able to add the (s) at the end of kid.  Seems like I waited an eternity to be able to do that.), my husband and I are attempting to enroll Leyla in the Infant Sibling Autism Study.  It is a great way to contribute to the study of Autism and the dynamics of the study will allow us to have Leyla's development followed closely for the next two or three years, giving us the best possible chance to catch any problems early. Our family hasn't had a chance to contribute to Autism research since we lived in Florida over a decade ago.

        

Pulse

Chatboard (2)

  • i am not sure about this chatboard thing, but i since you get sooo many comments, i thought you might notice this as different (i will post it on your regular area as well, just in case)....i would love to pick your brain a bit....i am a special education student and would like to ask a few question
  • thanks . TEll me about yourself? I hope your not boring

Memories (1)

  • CleetusLiquor
    It was the Friday after Thanksgiving. I had just taken a test, and ACED it by the way! I was very excited to get out of school that day. I had a mission. I got out early...around noon or so. Through alot...and I mean ALOT...of logistical nightmares with renting a car, me and a buddy of mine got