Fight or Flight

i stopped writing here. i felt shamed.  i was accused of being selfish and ignorant. I was called unrealistic, regarding my son's future. Even my marriage was under judgement from the outside: i was ruining my husband's life and hopefully would have an early demise as he would never divorce me. yes, really, and much more, some petty, some slaying. and me? obviously, inside, on some level, i believed it. i told myself I didn't, but it has been a really long time since i posted. it had been a form of therapy, it had even become a love. and, without it, i withered inside.  in the past year, a lot has happened. changes that allowed me to see: that everyone is selfish to a degree, it's normal, healthy even, self-preservationist; that sometimes people lash out and say things that actually pertain to themselves; and lastly and perhaps most importantly, that some medical professionals are not knowledgeable in the fairly rare area of disabled teenagers who do not speak with their mouths but with their electronic devices. And that last one is the final straw that got me back here, and what I want to address. 

James had begun to lash out at his therapists.  Physically.  Now that he towers over them, this was beyond frightening.  Ate age 9, James hit me once with a closed fist and the power threw me into a wall.  While now, he didn't consider what he was doing "hitting" - and I believed him as I knew his strength - it was scary, beyond intimidating and completely unacceptable. Most of all, it was unlike him.  I began intervening, sitting in his therapy sessions.  Why could only I control him?  A few changes were implemented, like establishing a rotating schedule of his weighted vest and some weight bearing exercise before a sit-down activity.  His physical therapist even developed an entire, very grown-up program just for him.  I started to see changes in Speech and Physical Therapy, but not in Occupational Therapy.  And he was still lashing out. 

The powers that be pushed counseling, suggested things that could be done at home (one of which I found unacceptable).  I was told they couldn't address his need for conversation.  I was overwhelmed. James needed help. I interviewed (and rejected) the therapist they recommended as neither a fit nor affordable. The main issue was that until James was 100% independent on his iPad, I would have to attend these sessions.  I can't afford play counseling.  This was crazy. Throwing responsibility and money at a problem that James wasn't having anywhere else but his sensory gym.  

Sure James gets upset at home, but we talk about it.  Sometimes we have to change or pause a situation or activity, but it doesn't escalate. A savvy mom - whom James considers a friend - also disagreed with the counseling suggestion.  It's fight or flight, she said.  James can't express himself and is lashing out. Like the unofficial scholar she is, she sent me resources and articles. This confirmed how I felt. 

So I addressed the problem with words.  The results came pouring out over the next few weeks: He was frustrated. He didn't understand. He was insulted. He hated when the students (they are a teaching facility) knew less then he did.  He became enraged when they spoke about him, in front of him, like he wasn't there.  Or when they worked with him in the exact manner that they treated the three-year old next to him. He was upset about the lack of talking opportunities in Occupational Therapy.  They spoke AT him, like training a puppy or breaking a wild stallion. If he was upset, they would push through, ignoring his feelings. Complience the only goal here. It turns out he was striking out the most, against the two therapists who he loves the most, the two jumping through hoops to break through to him.  Why? Because they, of all people, should save him!  They should know!

So, I stopped the monotomous repitition in Occupational Therapy that he felt was belittling to him.  I requested new activities that would improve his daily life and that they be varied to help his self-confidence.  I requested a more consistant Occupational Therapist (it was rotating greatly and he was slipping through the cracks, not to mention bored).  I requested that James be involved in any conversations with students, about his care.  Most importantly, I explained that talking to James, using his iPad, in therapy is not a seperate issue in life.  It should be not only be assigned to an outside counselor. He has only been "talking" for a few years and needs to be encouraged. James needs to communicate - always - and that is a major occupational, speech, and physical therapy issue.  It is a major life issue! 

At home, we talked about how, in life, we are not going to like everyone and everyone is not going to like us.  We discussed coping with people we don't care for, about being respectful of others when we disagree with them.  We talked about doing our job even when we don't feel like it. These are hard life lessons. It has been an extremely stressful and difficult period in noth our lives, BUT, while he has a long way to go, James has improved. Whenever he feels hopeless and overwhelmed, I point out that EVERY human makes mistakes and has a long way to go. So, as my brave teen is working on controlling his hormones and his rage, I remind him that NO teenager ever consistantly and successfully practices self-control. Regardless of what some health care professonal says.  

What is exactly is "Age-Appropriate" ?

After ten plus years of living, breathing and reading autism, I have many areas of disagreement with accepted teachings and practices.  Most due to the current one-size-fits all education practices.  But one of my pet peeves is the "age-appropriate" goal.  In this day and age where couples honeymoon at Disney, both Grandparents and toddlers wear Ramones Tshirts, Starbucks serves cakepops, and most of us use text abbrevations, that term is up for debate.  

Why is my son's love of Bob the Builder wrong when masses are dressing up for ComCon? He is twelve, loves Chuck Berry, Bob Dylan, Sponge Bob, Flight of the Concords and Jack Black too.  I can't tell you how many times Bob the Builder has helped me with daily life lessons.  Look at Bob and his team: they work together; they all have different abilities and talents; they respect each other's differences!  Or, yes, you do need to learn math!  How could Bob be a builder if he didn't learn mathematics?!   Childishness is to be eradicated. But the state of being child-like? Experiencing joy, wonderment, freedom, delight, understanding? Or like Webster's says: innocence, trust and ingeneousness.  Well, bring that on, I strive everyday to be child-like.  

James' PDA Rules

There is on cool thing that I love about my son's autism. Seriously! I enjoyed what I will call "extended little kid-ness." No not the non-verbal part.  Not the lack of comprehension or ability part.  That beyond sucks.  It was the unabashed little kid love and appreciation thing. Hugs, kisses and holding hands! I had it until recently when I was told that I wasn't allowed to kiss him in public.  Eleven years was a good run!  On the street, I now put my arm around him.  Let's see how long that lasts.  

Homeschool Paean

Yes, I do, love it that much (although I admit that the idea was a bit daunting). In theory, we liked the idea and talked about it as a future, much researched and planned project.  Instead we jumped into homeschooling because we had to: James had to be removed from an inadequite and unsafe environment.  His fears prohibited us from simply placing him in a new school. The reality was exhausting.  At first it was excruciatingly painful. One day it took 5 hours to get through A SINGLE lesson.  I thought James would never stop whining and complaining.  I even wore his noise cancelling headphones (those things don't work). But then it just happened.  I have no idea when because it wasn't sudden.  But James finally understood numbers, he understood values. He fell in love with history.  Science awed him. It helped him to understand a world too overwhelming for him to experience firsthand (yes, those are his words). He discovered art.  He liked his paintings and knew he was talented. He was proud! Little by little, our bond, our trust crept into other parts of life. James began to communicating with others besides me. "Talking" with his iPad and communication app, Proloquo2Go.  And he was "talking" in sentences, about his feelings, his hopes, his dreams and about his autism.  We started going everywhere together, even to a crowded supermarket of panicked shoppers before a snowstorm. It hit me how far we have come when I realized I wasn't dreading extended alone time with my son.  It sounds foriegn to me now, but previously, I had been apprehensive when my husband had to work late or on the weekend.  Homeschooling has turned everything into a shared bond.  I know what he likes, how to tease him, I know how to grab his interest, how and when to push him, what his triggers are and how to cope with them, and, perhaps more importantly, James does too! Homeschooling gave my kid a feeling of security and of confidence.  We treated him like a kid and he began acting like one. Yes he is autistic but he isn't being defined by it anymore. This is what he says: