Friday, April 5, 2013

Autism Puzzle Pieces

I don't know what is going on in the world...but all of my friends who have kids with Autism ...especially, teenagers...seem to be going through hell right now.  I am blessed with a wonderfully diverse group of friends from all over the world who completely understand my journey, because they are on it too.  Starting this blog and my Confessions Facebook Page and subsequent private group was the best idea I've ever had in my life!

I don't have my own therapist right now, though I desperately need one.  I am so busy with the boys and my mom with all of their therapy, doctors appointments and school meetings ...I haven't had the time or energy to find someone I trust with my secrets.  So instead, I share my secrets with all of you lovely strangers that read this blog.  Although some members of my family may not approve of this blog, and/or the amount of time I spend on Facebook ...I don't really care!  The blog and Facebook is  Therapy at my Fingertips.  Anytime of the day or night, I can log on and find a friend who truly knows my pain and understands how I feel.  We can share a laugh or a cry together, without any judgement.

So if you are a blog reader and you have not taken advantage of my Facebook Page ...I am here to tell you -you're missing out!  My last blog post "Autism Awareness Confessions" received a lot of attention.  So many people identified with my feelings.  It made me smile on the inside.  I know that  I am not alone.  Not only am I not alone --but there are so many out there who have children on the spectrum who are dealing with even more than I am.  It makes me feel just slightly less insane ...just slightly.

Here is a response that came from my last post, from another Asperger's Mom who lives what I live...well sort of...

"Thank you for yet another post that shows me I am not alone in having children on the "Sprectrum" who behave in non typical ways. I find myself saying, "yep, my kid does that too!" 

Are you tired?  I am. 

It is like we live in a world that is made up of puzzle pieces to be put together to achieve a contented, productive live. While no family has all the puzzle pieces figured out for a perfect life and family, the NT families appear to possess the parenting puzzle pieces that work for training and raising their children. Those of us who have family members with autism were given those pieces too, but none of them seem to fit like they should for our children. 

We are expending so much time, energy and money, (which in and of themselves any parent is willing to do for their child) to find the correct puzzle pieces to help us understand how to raise our children so they can be productive citizens in this world with possibly some social happiness, But the puzzle pieces are lost or unknown. How do we find them all in an 18 year (and beyond) time period in order to do the best we can to faciliitate the training, teaching, and loving of our children so they can "fit in" enough to function and thrive in a world that seems to operate with a different puzzle picture than the one we have. 

Over the last two and a half years my 17 year old son had decided that, really, he is a female born with a male body. He has become obsessed with proving this is true. He says he has always felt this way, but I was there for his childhood, so I know that is not true.

When he was in 6th grade we had to move to a different state for my husband's employment. Our son had to leave all his friends and school and have total CHANGE in his life. Since he has gross motor issues, he has never been able to keep up with the active boys and has always seen himself as weak.  He is sensitive (the frontal lobe boundaries are broken) and emotional so can more easily get along with girls. The being-a-girl thing has become his Special Interest. I can pretty much figure out how his thought processes have controlled his emotions and beliefs to bring about this conclusion for himself, but he will not entertain any of those possible perceptions I might have. So, fine, be a girl, but keep up your school studies!

He has above average intelligence, but is now so obsessed with this new thing, that his single minded thinking has now excluded keeping up with school. I have to find the puzzle piece for how I can motivate him to get good-enough grades to graduate next year from High School. 

This is a kid who is relentless about getting what he wants, and no consequence seems to matter. He will pick the locks in our house while I am gone to get something I have that he wants. Then I have to physically take it from him, which you can imagine, results in a melt down.

I am tired. Tired of seaching for pieces to this puzzle that will help him to do what he needs to do to develop the skills he needs as an adult to survive in a NT world. 

It helps to read your posts and see that other children have these wierd sensory and behavioral issues, so I conclude there must be a way to make the pieces fit well enough for the child to become a reasonably happy, productive adult." ~Laura 

Yes Laura...I am tired.  I am so tired of trying to put this puzzle together, for not one, but two totally different children who live on the spectrum.  Sometimes it feels like the more I do ...the worse things get!  Nothing is never enough.  I am always waiting for the next shoe to drop.  Walking on eggshells, hoping to avoid that next meltdown, that will inevitably come at an inconvenient time.  Let's face it ...there is no convenient time for a meltdown.

We keep on moving forward trying to put this puzzle together.  The good news is -through my internet autism community, I have met many adults on the spectrum who are leading productive lives.  While they still have their issues and challenges, time and maturity has helped many of them to deal with them better.  So many adults with Aspergers tell me that life is much better after high school.  They go on to college and have jobs, wives and children.  Our adolescents are facing unbelievable stress, social pressure, anxiety and depression during  a time when they are immature and their bodies are wreaked with hormonal changes. The truth is there is no other setting like middle and high-school in life.  College and the work environment are much different.  Not only that, they have more choices about what works best for them. 

The day to day that we are facing while raising these kids is really, really hard.  This is especially so as mothers, because we have a tendency to go through every emotional up and down that they do.  Our hearts are tied together.  So yes is exhausting. The good news is this Oprah says, "The one thing I know for sure is" ...there. is. hope.