Friday, January 24, 2014

525,600 Minutes.

I know I'm a little late with this but, it's January. The year 2014. Happy New Year. I feel like I skipped right over the "changing of the year", and I guess I did. It feels weird because it's supposed to be a big deal or something, but I guess it's not really a big deal at all. What is a big deal is that a whole year has passed in what feels like a blink of an eye. How does that happen?

It was a year ago, almost exactly, that I brought up the subject of Jack and Aspergers, (for the third time in his life). It was a year ago that I set out to read everything I could get my hands on to educate myself on the condition. To date I've read at least 20 books, countless blogs,  watched movies, documentaries, TED talks, and set up camp at YouTube. I even branched off, learning more about Introverts, gifted children, and the HSP.  I'd say I covered my bases.  And it was nearly a year ago that I stumbled upon what seemed like a tribe of women who's experiences and difficulties were mirror images of my own. Many of whom had children with Asperger Syndrome and later received the diagnosis themselves. This discovery sent me off on another quest for information and I suppose you could say it became a special interest. 

It's been a long, and mostly solitary, journey.  A journey that initially started out of worry and fear, but eventually evolved into a journey of self discovery, self-acceptance, and self regulation. The journey is far from over, but I can say with certainty that I no longer feel the same sense of dread that I did a year ago.  I still fear some things, but I'm no longer afraid  for my child.  I'm no longer afraid that he may have Aspergers. I've gained a much better understanding of him and myself, and while I know that he will struggle, I know that he will be okay too. I haven't said too much here about Jack's father, but if I had any money at all I would wager it all that he, himself, is also an Aspie. I have no doubts. In fact, I believe that was what initially attracted me to him in the first place. I had an overwhelming feeling that I had  "found my people." Even years before we got together, I remember his then girlfriend telling me, "he's just like you. he's like the male version of you". And it was true in many ways. Not all, but many. It wasn't enough, obviously, to sustain a relationship, but even now, I know he "gets it", when so many other people don't. In spite of all of this knowing, none of us has received a formal diagnosis at this point. My doctor, through my own therapy and the information I've shared about Jack, has taken to referring to us as neurodiverse.  (You can read John Elder Robinson's take on Neurodiversity here.) That's as formal as we've gotten, and so long as there are no major problems or services needed, that may be as formal as we get. Time will tell. I've gotten more comfortable with ignoring the "early diagnosis is crucial" cries from the Medical Profession. Throughout this process I've found more helpful advice from Autistic individuals themselves than I did from any Medical Professional that does not have Autism. And lets face it, it's too late for an early diagnosis. It's too late for the no eye contact, flappy, toe walking diagnosis. That stuff doesn't happen anymore. Not often anyway so they would never be able to see it. 

So where do we go from here? I don't know. I guess we keep learning, keep discovering, keep accepting and most importantly we keep self regulating. We treat the comorbid symptoms. Primarily the anxiety, OCD tendencies, and rigid thinking. While I'm still having some difficulty with all of those things, my son, is learning quickly, but then again, he's not an Old Dog like me.  

I feel good about where he is today versus where he was a year ago. I find it funny sometimes when someone makes a comment about his behavior, like..."is that healthy for him to spend so much time doing that?"  I know it's usually out of concern, but what's funny is it's always from the same people that don't really accept Aspergers as the reasoning behind it. It reminds me of when I was a child and I would hear... there's nothing wrong with her...along with the conflicting...that's not normal. People are funny. And sometimes infuriating. 

So, a year after this blog post , what is Jack like today?


Is obsessed with LEGO'S and is determined to become a Lego Designer.

Is more adventurous with trying new foods, but will latch onto a certain food for weeks. Occasionally he will drop a food from his diet and not want it again. Ever.

I don't see much toe walking but have noticed the flapping returns sometimes. 

Still a nail peeler, but has started using a stress ball, especially when angry.

Still constantly singing and humming movie theme songs or T.V. jingles or making sound effects. Constantly. Did I mention it was Constantly? He also nails the tune.

When he draws it's not just one picture...he goes through 10 or more pages making one after the other. He also draws with detail and perspective.

Still prefers video games and electronics and Lego's to playing outside or with other people. At nine he still does not know how to ride a bike and has no interest in learning.

If he's not playing a video game he has Lego's in hands (constantly) making sound effects. 

Doesn't like to have to go anywhere. Would rather stay home. Doesn't like his routine interrupted, but can sometimes deal with it without tears.

Rarely has to be disciplined. Once he knows the rules he sticks to them and would like for everyone else to as well.

Is heartbroken if he does happen to do something wrong.

Has minimal anxiety about going to school. Usually only on Mondays or after a vacation. (routine interuptus) The rest of the week, though, he dives into his routine and has been all smiles. He sets his alarm for 5:30am so he does not have to rush and has time to play in the morning. He has also become a multi-tasker by using his bus ride to do homework. These are things he's initiated on his own with no help from me.

He still would like things to be perfect but, is more accepting of making mistakes than he ever was. Only breaks down occasionally.

Seems to have a lot of empathy/sympathy and cries easily over real or imaginary sadness

Has developed an obsession with watching YouTube videos. Mostly of other people playing video games. He will also watch Sponge Bob in Spanish.

Is very honest! Loves animals.

Quotes lines from movies or shows while playing.

Has taken to info-dumping, which basically means, when allowed, he will talk non-stop to me about a favorite subject, video game, Lego's or a world in his head. He could do this for an hour straight if I don't stop him.

Can be very literal and often looks to me for clarification. (was he joking?) He has learned to DO some sarcasm, but still doesn't know what it is. :)

Has started requiring alone time.

Has strabismus...little to no depth perception and is color blind.

Expresses his love for his immediate family often and easily.

Enjoys other children, laughs, is silly, but will often just watch them play and only engage in his own personal interests. Needs down time after playing with other kids for long periods of time. He's also starting to collect, and become more possessive with his "things."

Doesn't like sports. Doesn't want to be blamed for doing something wrong. Is only competitive against himself.

Will now only wear comfy pants. No jeans. No buttons. No zippers. Would stay in PJ's forever. :)

And there you have it. There is a lot that hasn't changed and some new behaviors that might be considered obsessive, especially by people with no attention span...but...and this is the most important part...if you read the previous list from last year, the changes that have occurred are all positive. Reduced Anxiety. Self-discovery. Self-acceptance. Self-regulation. 

Diagnosis or not, it's working. 

Hope, who would have appreciated more support when she started this journey, but knows now that she really didn't need it. Trust your instincts.


  1. He may not be an "Old Dog", but he might be an Old Soul. This was one of my favorite posts to date. While I wish I could say I was more supportive, maybe I knew you didn't need it (yet) all along. I still have an article I saved for you, probably close to a year ago if that counts. ;) Happy New Year, friend. You've helped me through a rough couple of years, even if you don't know it for sure.

  2. You've been far more supportive than you know by just being there, my dear! Here's to another year, and hopefully a better one!