Monday, April 15, 2013

Autism Awareness Month 4/15 - Confessions of an Aspergers Mom - Blogger

The Autism Awareness Month project is about exposing new new writers and/or under represented voices to our community. There are probably 1000+ blogs written by a parent of a child on the spectrum, and 990 are about a child under 12. What about when our kids go to Middle School? High School? Transition to adulthood? These blogs are few and far between.

Karen at Confessions of an Aspergers Mom writes a fantastic blog about raising teenagers on the spectrum. She's not only a great writer, but draws from her experiences raising 2 teenagers on the spectrum.

Invaluable and under represented.

Sassy, funny, and witty, yet fierce, staunch and poetic.

Ladies and Gentlemen, I present one of my favorite bloggers and friends, Confessions of an Aspergers Mom...

 Teens on an Alternate Universe

If kids were born as teenagers, the world would cease to exist as we know it.  People would never have more than one.  I think I had some of the most beautiful babies on earth.  The first one was so freaking cute…he tricked me into having another one.  It wasn't until the second one was on his way, that we figured out that my first born was speech delayed, extremely active and had a knack for having temper tantrums.  We knew nothing of autism at that time.  It wasn't even a blip on the radar.  The thought of having children with special needs was nowhere in my wildest imagination.  When my doctor told me I had another "very active" boy in the womb,  suddenly I wondered what in the hell I had gotten myself in to!

When they are babies they are so cute and adorable.  They smell good.  They make you smile by their sheer existence.  They don't talk and when they finally do --it's such a miracle that you are thrilled.   They stay pretty darn cute until around the time they leave elementary school.  You know right up until the point that they reach adolescence.  Then it's a whole different ball game.

When they are teens …who never stop talking …back.  They never stop asking for more and complaining…non-stop.  Suddenly, they aint so cute anymore.  When they are teens, those little tantrums they had when they were small, become big and ugly.  Meltdowns can leave holes in your walls and break down your doors. Yes -off the hinges.

When they are bigger than you are …you can no longer control them physically and that offers a whole new set of challenges.  You never imagine yourself having to call the police to your own home because your child has become violent and is destroying property  during a meltdown. 

You never imagine yourself checking your child into a pediatric mental ward because he has become so depressed, that he has threatened to harm himself.  Who parent does such a thing…right?  Don't judge until it happens to you. There are many days that you can't believe this has become your life.  You never knew the teen years could be this hard.

So it turns out that I have not one, but two children on the spectrum.  We didn't have the benefit of an early diagnosis like so many have today.  My first born child is now 17 years-old.  He was born in 1995.   Early on we had no idea that he was actually on the spectrum.  Between the age of two and three, I noticed that his speech was delayed.  He talked, but we did not understand much of what he was saying. 

Yes,  he saw a Pediatric Neurologist and entered Preschool for Children with Disabilities.  However, we were simply given the speech delay diagnosis.  Later, in 1st grade, there was ADHD.  In 4th grade there was depression, which really brought me to my knees. But even that did not accurately paint the total picture of my child.  There were still some pieces to the puzzle to be solved.

None of this fully described my special child, who never seemed to pay attention and didn't give much eye-contact.  He made really good grades and seemed to pick up on everything that he appeared to not be paying attention to.  There were many other signs that in hindsight are blatantly obvious that he is on the spectrum, but as I said,  I knew nothing of autism and what I did know of it, didn't look like my boy.  The term Pervasive Development Disorder was thrown our way.  I heard the word pervasive and I thought it meant all-encompassing.  My child is very bright.  He is high-functioning in so many ways.  What the heck do you mean Pervasive Developmental Disorder?

We did not get the official diagnosis for Red until he was 12 and in the 6th grade.  The lack of social connections, and fitting in with peers were definitely a huge part of his depression.  Shortly after Red's diagnosis, I had my younger son evaluated because he had some of the same sensory issues and he did not seem to pick up on social cues.  He had very black and white thinking, and would periodically become emotionally unhinged when teachers did not do things the way that he thought they should.  We came up with an Aspergers diagnosis for Blue as well.  He was 9 at the time. 

He had started asking questions like, "Why am I so different?"  I wanted to get answers for him. 

I started my blog "Confessions of an Aspergers Mom" as both boys were crossing over into adolescence.  I am a writer at heart and in spirit.  Writing about my life is my therapy.  There are many autism blogs out there in the world, and it seems that the majority of them are about younger children.  My readers come to me to see what they are going to be dealing with in the teenage years.  Let's face it, any of us with an autism diagnosis for our kids,  are constantly worrying about what is in their future. 

Well, I am here to tell you …this shit is hard!  However, there is hope.  There is growth and it will get better. 

Entering in middle-school is scary for them.  It was scary for me.  Both of my boys were at the same elementary school from pre-K until 5th grade.  Everyone knew them.  Everyone loved them…anyone who didn't, got their ass kicked by me until eventually, they fell in love with them too. 

They both made it through their first year of middle school, one a little better than the other.  My younger son Blue, had the benefit of having of a great autism program, with a social skills component in place.  He has a special education teacher who understands him, and helps advocate for him with his team of teachers.  We worked together with coaches to make P.E. class a little more tolerable for him.  And somehow of his own volition …the cafeteria which was a nightmare in elementary school, became tolerable in middle school.  He even started eating their food.

The boy who entered school deathly afraid of dressing out and eating in the cafeteria, left school that year doing both very well.  Not only that, he did so well academically, that we ended up moving him into advanced classes for the 7th grade.  He not only survived his first year of middle school, he actually thrived.   This was also the year he started eating a more balanced diet.  Of course, there were plenty of hiccups along the way, but I am so proud of his growth.  

My eldest, Red barely survived middle school.  We had to move him from his home campus to another campus that had a more intensive program for those on the spectrum and those with behavior issues.  Back then the home campus where Blue now attends was absolutely clueless about autism and they really did not have much in terms of support. 

Red is doing better now in high school.  He is back in our neighborhood on his home campus, but in a special education program called Project Achieve.  Once, I threatened to take him out and put him in private school,  they changed his campus and brought all of the resources out of the woodwork to make things work for him. 

They knew the boy has a big mouth mother who has a blog, and would rip them to shreds publicly for not doing enough for her child.  Not only that, I would sue them to pay for his private school education.

Blue is now in his last year of middle school.  He continues to do well academically.  He has friends, many of whom are on the spectrum as well.  He keeps his social calendar full, every single weekend.  He is still anxious, and somewhat depressed.  We continue to struggle with finding the right medication combination to help him with his anxiety.  Many a day he is an emotional wreck as his body goes through hormonal changes.  He manages to keep his grades up and rarely falls apart at school.  He saves most of the drama for me at home.

Red is now 17, a junior in high-school.  He is in mostly special-education classes, where he thrives academically, but really doesn't see the point of Algebra, Geometry and History.   He has extremely slow processing, so he can do grade level work, just at a much slower speed than his peers.  His best subject is math.  Why? Because it is so black and white.  It's not about interpretation …it's about formula.  Follow the formula and find the right answer.

He struggles quite a bit socially, which is a cause of much perseveration and distraction in class.  There was a time that I prayed for just one good friend.  And now he actually has several close friends.  He has many of his social needs met, by attending church and youth group, which he decided to do, on his own.  He makes arrangements to get to church every Sunday, and at least once during the week for youth service.  He also volunteers at school with kids who have more severe disabilities.  It lights up his world to help others.

His special interest is film editing, and videography.  He has started his own videography business.  He does events like birthday parties, and soccer games and photo montages.  He did our family reunion video, which I believe, was his best project yet.  He does well with this when he is not focused on social issues.  He has self-taught himself how to use video-editing software.  His video mentor says that he has enough skills now to find a job as an assistant editor for a television station.  We plan to have him get a certification in video-technology at the local community college after high school.

As kids get older and start to figure out that they are definitely different, it is so hard  for them.  They have the need and desire to fit in socially with their peers, they can become depressed.  As a parent it is so hard to watch them try to navigate the treacherous waters of middle and high school.  We can guide them, we can advocate for them, and teach them to advocate for themselves.  But at the end of the day, we can't walk in their shoes and completely protect them from the world. I work on finding balance every single day.  

The good news is …they continue to move forward.  They grow, change and mature, sometimes not as quickly as we might like for them to.  If we continue to pay attention and work with them on independent living skills, and self-advocacy, there is no reason to believe that they will not be able to live productive lives as so many on the spectrum do.

Ed. Note - Check out her blog here and "like her facebook page here

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