Friday, October 19, 2012


I have been feeling more and more uncertain about the Prince’s future lately.  I think it is the reason I have not been blogging here very much.  I have always had a philosophy of hope.  And I still am hopeful, but we are on the brink of the teen years and the differences between the Prince and his peers are becoming more noticeable.  He is a little boy in a big boy’s body. 

Of course I know how fortunate we are that the Prince responded to all the therapies and is now able to speak and that for the most part, has ok adaptive skills.  At age 10 we are still working on certain elements of personal hygiene and tying shoes, but in the scheme of things, that is minor.  He’ll get it eventually, and if not, there is always Velcro.  He is toilet-trained, which I will always consider one of my greatest achievements. He still stims-- jumping, pacing, wringing his hands—and he has some verbal tics--but some people bite their nails  or have equally annoying habits.

I cry for my friends whose children are the same age as the Prince, but have not yet heard their child’s voice and I feel blessed.  I feel for my friends whose teenagers with autism are not toilet trained.  I really do know that the Prince is lucky and our lives are easier than those whose kids have more classical, Kanner’s autism; that is, if the Prince has to have autism at all, at least he has responded to treatment.  Although I am beginning to think he has plateaued and that scares me.

With “high-functionality” (I will always hate those terms, high and low functioning) comes a certain awareness of “being different” that has already led to OCD and depression in the Prince.  At various times when anxious he has pulled out his hair, or his eyelashes.  I see in my friends whose children are in high school and are high-functioning how prevalent anxiety and lack of self-esteem are.  My son is already on two medications for this.  What will happen when he gets older and his social world gets even more complicated?  Right now, his classmates who have known him since kindergarten are sweet to him, sort of protective, like they would treat a little brother or sister.  They love his echolalia, “Do Toy Story,” they say or “Do Cars,” and he does.  But what will happen in middle school next year?

The Prince has a terrible time maintaining focus on anything other than the lovely thoughts in his beautiful mind.  It seems to have worsened over the years.  He escapes into the safety of his inner world whenever he can. His eccentricities make him very likable, especially with adults.  Even his teachers, who have to work really hard to keep him on task, find his special interests to be charming.  But the ability to repeat facts from the NASA website will not get him his dream job working at the international space station—or even working at our local grocery, Publix, which employs many people with disabilities--unless he can master division, or sit still for more than 30 minutes, or maintain a two-way conversation.

Although the Prince has been fully-included with SPED support since kindergarten, we have always felt he needed a para.  But we were repeatedly told “he is too smart, he will become dependent, the other kids won’t like him.”  Fast forward to 3rd and 4th grade, and  his poor over-stretched teachers finally saw the need for a para too.  Now in 5th grade, after two years of jumping through bureaucratic hoops and the assistance of a professional advocate, the para is on the way.  The Prince will never be able to navigate changing classrooms next year without one.  I wonder if school would have been easier for him had we pushed earlier for a para and I feel guilty.
We are trying to help him become independent, but giving him supports too.  That is one reason we got Annie, his autism service dog.  She is a companion, a kid-magnet who forces him to be social with other children, and she is a helper for the Prince and for us.  Our current rounds of therapy involve teaching the Prince to control his internal impulses and his thoughts.  It is hard for him and for us.

My beautiful boy goes through life with intoxicating visions of supernovas and asteroids flashing in front of his eyes. I love him so much.  And I worry about him so much.  Will he ever be able to work, or live independently, or drive?  Will a girl ever fall in love with him?  It’s hard to know how to plan for his future with so much uncertainty.  As a cancer survivor (almost 4 years and counting!), I have learned to live with uncertainty for myself.  But accepting the uncertainty for my child is harder.
These have been my feelings for the last several months.  But today I watched a video of Katy Perry and a beautiful little girl on the spectrum, Jodi DiPiazza, perform Perry’s song, Firework.  It made me cry.  The words are so beautiful, “after a hurricane, comes a rainbow.”  Watching this touching performance made me realize I should not focus on the future, but on the present.  To enjoy those flashes of color that brighten the moments of darkness we may feel from time to time, and to realize that I can see the unique ways my son can light up the sky, if I only  look hard enough. 







Genie said...

Sigh...I can't even imagine how hard it must be to experience the uncertainty you describe, and how hard it must be, on many days, to focus on everything that is good instead of just all the challenges that both exist and that are ahead. But here's what I can't get out of my mind...the amazing and wonderful Prince is so very, very lucky to have both of you in his life (with all the resources & smarts & devotion that you have leant to the situation), and but for the grace of circumstance, that might not have been the case. All of you are so lucky, even on the hardest days. Sending lots of love your way, and thanks for sharing your story and your emotions, and the video, which made me cry, too.

mrspelaez said...

Thank you for telling the story of your beautiful Prince! This was another wonderful example that sometimes blessings come with rain. The video gave me chills!!!!


rebecca said...

I totally understand your feelings and I am at the very beginning of my journey. My son is 33 months and was just diagnosed this week. I already wonder if I would have noticed things sooner, started speech therapy earlier, etc he would be ahead of where he is now. I also find myself jealous of friends with lots of normal healthy children and scared to even consider having more.

B said...

it's SO SO SO hard!

I too try to be positive but how do you go through every day motions with the fear of not knowing how this ends? if we are not here for our kids in their old age, what happens? It's so easy to be on the other side and just wave it off as "too much worrying".How do I not worry about me being 80 when Kai is 50? Yes, I know we can all die tomorrow and we worried "for nothing". But, if we are "fortunate" (and I use that word loosely) to be around that long, how do we do it? We have no answers. I am with you. It's a constant huge knot in my stomach.

Las Azucenas said...

I'm excited to see another great fireworks during new year and this coming holidays...

Dorothy said...

Dorothy of Oz is sure to be an instant classic for the whole family. The film is due out next year but the buzz being created is undeniable. Between the vastly talented cast and the original music, how could you not be excited! Glee's Lea Michele is in the title role as Dorothy Gale and she will bring such a fresh sound to the legendary character. Let us not forget Martin Short, Bernadette Peters, Kelsey Grammer, Dan Aykroyd, and many more bringing life to both new and older familiar characters!! Dorothy of Oz has all the components to be the new family favorite!

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