Why I Care

As I read way too many blogs on the internet these days, I see a recurring phrase among autism moms.  It goes something like this “I don’t care, what caused it.  Now that he/she has autism, it’s my job to help any way I can.”   I understand and respect that perspective, but there’s a part of me that feels a little defensive since I really do care about the causes of autism.

If  Naomi had slow, steady progress with her therapies and biomed interventions, I would probably be among the ‘I don’t care’ ranks.  After all, what does it matter if things are improving and you can’t go back in time?  However, we haven’t seen slow, steady progress.  Our path has been full of ups and downs.  Progress – regress- progress- regress – progress -regress.  (If I hear ‘it has to get worse before it gets better one more time, I’m going to punch someone!) I’ve frequently been told, when starting a new therapy or supplement.  “Keep everything else the same so you know if it’s working.”  This assumes, if we keep everything the same, Naomi’s behavior, awareness and sensory experience will stay the same.  Well, it doesn’t.  So often, Steven and I look at each other and said “Has anything changed in the past week?  Are you giving her the same supplements, going the same places, doing the same activities?” The answer is usually “No. Nothing has really changed,” and “Yes, our routines have remained the same. ”  Most of the changes we see don’t have an obvious cause.   Of course, nothing is ever exactly the same.  There are some things that are out of our control.  We can’t keep the seasons, the weather, or several other extraneous factors the same.  Nevertheless, there usually isn’t a change that we can point to.  As far as we can tell, there’s nothing to point to. 

So, if we knew the cause of her autism, maybe I’d have a better idea what causes this progress- regress pattern.  We can’t possibly live in the modern world and avoid every last thing that may be unhealthy, but if I knew what triggered her, maybe I’d know how to prioritize and what to do to help her make progress.   The ‘try and see’ approach takes an extraordinary amount of time, energy and money and it’s really not working for us.  So maybe, just maybe, if we knew what the cause was, we’d our path forward would be clearer.                  

That’s why I care what caused it.                                       

Autism Has Not Made Me a Better Person, Is That Okay?

I often see blogging parents say that autism coming into their lives has made them better people.  I really respect and admire this perspective.  But I can't really relate to it.   I get that there are a number of good things that come out of a parent's experience with a child with autism.  I get that when this comes into our lives we acquire a new perspective.  I get that our children are true blessings.   I get that we find out who are best friends really are.  But I can't see autism making me a better person. 

I've asked parents how autism has made them better and the number one answer is "I am more patient."   This is a great thing, but again, it's not something I can relate to. I am more patient with my kid than if autism had not been a part of her life.  How could I not be?  It's simply a survival mechanism, because if you don't learn patience you really can't get through this with all your nerve endings intact.   I don't think I am a more patient person in general.  In fact, I am less patient with the rest of the world. When we are waiting in line and I know that my kid is revving up to a meltdown if we don't get on our way soon, I have no patience. When we are on the wait list to get services that my daughter desperately needs, I have no patience.  When the babysitter is late and we are going to be late for a theater performance that is the first I have seen in many years, I have no patience. Basically, I have more patience for one person: that's my daughter, the person with autism.  I have little patience left for the rest of the world.

The second most common answer is "I'm more compassionate."  Once again, it is a great thing, but not something I identify with.  I think I've always been a bit of a softie, so lacking compassion wasn't really an issue for me.  Like almost anyone, I rolled my eyes when listening to drama queens, but beyond that I've had a fair bit of compassion. I have learned to have more and more compassion for Naomi as I realize how complex and challenging her neurological condition is.  I have learned to have more compassion for people with neurological conditions of many kinds. When it comes to the general population, I am perhaps less compassionate.  I am considerably less tolerant of the trivial complaints that people expect me to listen to.   You're kid incessantly talks and talks and talks and gets way too many phone calls from the plethora of friends she has?  Gee that must be hard.   You got a hotel room that doesn't have the perfect view of the beach and you still had to pay top price?  Life is tough.   Your daughter is getting married and the church is booked for all the dates that you wanted.  Boo hoo!  You get the idea.  I shouldn't shame these people for the little complaints about the ups and downs of life.  Heck, I complain about little things myself.  Still, I measure way too many things against the autism measuring stick.  There are a lot of people with serious problems.   I hear about friends with cancer, a child with a debilitating and life-threatening illness, people whose homes are foreclosed upon and whose families have turned against them. Those people get my compassion.  For the others I often think "What I wouldn't do to have your problem!"  I have little compassion for people whose problems pale in comparison to an autism diagnosis.   A kid with lazy eye?  ADHD?  She needs braces and you don’t have insurance?  Go find another shoulder to cry on.   I just can’t give it to you.

Autism can take a parent’s life into an area they would never have dreamed of. Sometimes it motivates them to start a new autism-related career, sometimes it makes them more politically active and turned on to advocacy.  I admire them to find the time to pursue such venues.  I don’t know how they do it.  The drain on time and energy which are already in short supply makes that difficult for me.

I suppose I am more humble because of autism. There’s a lot of less-than-positive feelings that go with that humility.  I won’t go into them here.  Suffice it to say, they do not make me a better person.  I often feel guilty about this. I wish I felt like I was a better person for having autism in my life. I wish I could see it that way.  Believe me, I’ve tried.

At the same time, if I told Naomi  that I were a better person because of her autism, I don’t think it would make her happy.  Autism prevents her from a lot of things that I know she wishes she had in her life and it has caused her a lot of suffering.  Would she be happy knowing that it has made me better?  I doubt it.  I know that if I were in her shoes I would say “I’m glad that you are getting something out of it mom, but really, it’s not about you; it’s about me. I’m the one that autism is affecting! ”

I’ve learned a lot.  I’ve met some wonderful and fascinating people.    Still, I don’t think I am a better person.  For me, it’s a no brainer to think that I’d happily give up everything I’ve gained for the autism to disappear from her life.  In fact, forget losing the diagnosis, I’d give up everything I’ve gained and more for Naomi to have a true friend that she could play with.  If she could have that, maybe I’d feel like a better person.

The Concert

"You’ve seen her on TV; you’ve listened to her CDs and now here she is live. Laurie Berkner!"   I surprise myself with my own reaction.  My heart is pumping and my adrenaline is flowing.  What is wrong with me!  This is a children’s singer!  Oh heck, I’ll take euphoria where I can get it!  We are here!  We made it!

Laurie Berkner comes out on the stage and Naomi immediately jumps up and starts to run.  We hold onto her before she gets far.  “HI LAURIE!  Hi Laurie!”  She cries out as spontaneous and appropriate as we have ever heard from her.  She is thrilled to see Laurie Berkner!  She sings along dances in the isle, follows the motions and the directions.  She is having a blast!  She is doing great!  I remain euphoric. 

This all started about a month ago.  Naomi has very pretty long curly hair, but she always insists on wearing it tied up in braids. I encourage her to wear it down, but she never heads my advice.  “You know what Naomi?”  I say one day.  “ If you wore your hair down,  and got it cut, you’d look like Laurie Berkner.” 

“Get your hair cut! “ She responds.

Okay. We can do that. 

Go get your hair cut!

Well not today.  Maybe in a couple of weeks.

Naomi recently had her hair trimmed.  So she didn’t really need a cut.  But if she wanted the “Laurie look” we would need a cut.  Did Naomi understand what she was asking for?  I wasn’t sure.  I figured if we put some time between the decision and the actual haircut, there was less chance of misunderstanding.

Okay in Three weeks – That’s 21 sleeps, we’ll get your hair cut like Laurie Berkner.

She seems satisfied with that.  It is not until the next morning at breakfast that I realize there is a huge misunderstanding

Naomi says “21 sleeps and then get your haircut and then see Laurie Berkner.”

“No Naomi.   You’ll get your haircut and you’ll look like Laurie Berkner, but you won’t see her.”

“SEE LAURIE BERKNER!!!”

Uh-oh! We have a major misunderstanding here.   “Look-like”  in Naomi’s mind does not mean “resemble” but “see and enjoy”.    So according to her thinking we have a deal.   In 3 weeks she will get her hair cut and then we will go see Laurie Berkner.   Convincing her that we never had such a deal was not working.

I hope that by blowing it off, the idea will fade.  But she continues to remind me “20 sleeps then see Laurie Berkner”  “19 sleeps….”   “18 sleeps”  “17 sleeps”.  When we get to ‘14 sleeps,’ I’m getting nervous.   How are we going to handle this when it comes down to the wire?  So I check google “Laurie Berkner concert”  Well, it appears she is touring.  It looks like in 16 days she will be in Detroit.   That’s really close to Naomi’s 14 day deadline.   Is this fate?  Should we do it?   It mention it to my husband and he agrees that it is possible.   We wait a couple of days.  The enthusiasm  for Laurie  Berkner has not waned.   So we go ahead and buy the ticket.  It’s being held at a Jewish Synagoge.  (What a cool organization, eh?)  The personnel at Congregation are wonderful.  We buy tickets to meet Laurie and when I told them about her autism they told me she could be among the first group to meet her.  While realizing this is totally crazy and going far beyond the lengths I swore I would never go to for a child novelty concert, I’m excited.  I’m praying it all goes smoothly and fearing that something will prevent it from happening.   Someone will get sick, we’ll have car trouble, the hotel will have lost our reservation or there will be a last minute need of a family member.  But we are here!  We’re healthy; everything is fine and Naomi is having a blast!

We even got to meet Laurie Berkner!  She is as talented and charming and sweet as she comes across on her DVDs.  I totally agree with the rabbi that introduced her saying “She makes it possible for parents to enjoy children’s music!”

Thanks Laurie!  This is a memorable event for years to come.

How Did We Get to This?

I’m at Chick-Fil-A looking at 4 chicken nuggets and an ice cream dish.  I bought this for Naomi.   I swore I would never be a mother that bought this kind of junk for her kid.  But here I am.  How did we get to this? I didn’t start out this way.  Naomi had never even had a dairy product until she was about 5. We had a pretty clean diet right up to the time of her diagnosis when we immediately started on a gluten free diet;(we were already eating dairy free.)  3 years later, when we didn’t see results, we went to the specific Carbohydrate diet.  She was eating almost nothing but nuts, eggs and fruit.   I was up at all hours of the night making things from what seemed like a very limited list of ingredients.  Still, 7 months later we didn’t see progress.  A friend of mine said.  “If you’re not seeing progress, why don’t you stop?”  I didn’t have a good answer, so we stopped.  At first, we still kept Naomi on a healthy diet.  When she had the never ending impulse to go out, we went to Smoothie Café.   I spent lots of money on smoothies from which she never took more than a few sips. That wasn’t the point.  We were renting space and the food was healthier than average.  And then I guess I got tired.  When there was a pizza party at school, I didn’t want her to miss out.  When she came home saying “chicken nuggets,”  I figured I’d let her experience them first hand.  When the grocery store was selling leftover Easter candy cheaply, I bought some for her and for me, because it had been a long day and chocolate is my drug of choice.  How quickly Naomi took to junk food!  How weak I became at telling her “No!” We still include good food in her diet.  She has asparagus, salad and organic fruit. We manage to stay away from skittles and M&M’s and pop.  The pepperoni on her pizza is free of BHA and BHT.  But she does eat pizza and ice cream and chicken nuggets.  Sometimes, I look at what she is eating and I think “How did we get to this?” and I’m disappointed in myself.  I’m disappointed that I’ve lost my stamina.  I’ve become another mom that buys her kid junk food. I look at another special diet to help kids with autism –grain free, yeast free, free of all processed foods - and I think “This will kill me before it helps her.”  Even if I had the will power to resist her protests, I don’t know how I’d find the time to cook everything from scratch.  In the end, I guess I lost my faith that diets will really work for Naomi since we’ve put a lot of time and energy into a couple with no success.  Although I know it is always better to eat healthy, I don’t see a difference in Naomi’s behavior or progress in relation to her diet.    I feel guilty for not trying harder and I may get the motivation to try another diet some day.  But for right now, I’ll just let Naomi finish the chicken nuggets and ice cream while I swallow the guilt.