Someday You Will See

I think I'm finally ready to write about it.

Autism.

It's official: my sweet little boy is autistic.  


I started noticing when he was about one year old.  He wasn't reaching the expected developmental milestones.  He didn't walk until he was 17 months old.  He'd learn some words, then forget them.  He'd only look me in the eye when I was singing to him.  He wouldn't respond to his name or follow simple commands.  Yes, we have had his hearing checked, and it's fine.

Many of these things he still doesn't do.  He won't sit still in church unless he is physically restrained.  He won't point to something he wants.  He still won't say "Mom" (though we do get the occasional "Dad").  He only has a few words (fewer than 20) he uses consistently, and it's usually just in his babbling that we hear them.  He still puts anything and everything in his mouth.  He is constantly waving, and I'm not sure why.


Allen and I took him to the Children's Center in Salt Lake City last Friday.  Allen had made this appointment several months ago, per my sister Sarah's recommendation.  While there, we met with Dr. Goldsmith, a psychologist, and the director of the Children's Center.  We both filled out several questionnaires beforehand.  We talked about what Benjamin does and doesn't do, how we deal with him, etc., while Benji wandered around Dr. Goldsmith's office, doing his thing (i.e., exploring, taking books and toys off the shelves, tasting all of the crayons, etc.).


At the end, Dr. Goldsmith said that Benji is unquestionably autistic, and has PDD (Pervasive Development Disorder).  At first, it was a relief.  It certainly wasn't a surprise, and it felt nice that it was official.  Then, Dr. Goldsmith started outlining places we need to go, people we need to call, websites we need to visit . . . and it started to hit me.  My child has autism.  There's no more skirting around the issue, saying that we 'suspect he might be,' or that 'he falls somewhere on the spectrum,' or secretly hoping that he's just a late bloomer and he'll eventually grow out of it.  Nope.  He is autistic, and there's nothing I could have done to prevent it.   Dr. Goldsmith recommended that we contact various school districts and government offices for further evaluation and to find out what programs may be available to us, and that it's going to be expensive.  I asked him if there was anything he could do for us at the Children's Center, and he said no; their programs are geared toward children who are more verbal, and Benjamin would feel uncomfortable there.


Since I had to come directly from work, Allen took Benji home, and I went to my car.  And cried.  I'm not one to cry for a long time, but I literally couldn't stop.  It all hit me at that point: the fact that my child may never tell me he loves me, the fact that he may never be able to go to normal schools or serve a mission or get married, as well as the fact that I will never be able to stay at home with my child, because I will be handing over a good portion of my paychecks to people whose sole purpose is to help my child 'be normal.'  Along those lines, I selfishly cried for the loss of my future too: that I will no longer be able to pursue my own goals, because all of my financial, emotional and physical resources will be devoted to him.


I know I'm not a great mother; I have worked outside the home full-time ever since he was born.  I only nursed him for a month, then I couldn't handle it anymore.  We let him watch entirely too much television because we're too wrapped up in our own lives to play with him.  Allen said that we are only guilty if we don't do anything about it.  And that's true, but that's also hard to accept.  And that's part of why I was really very depressed over the weekend.


Allen is handling it much better than I am.  He said that 'this has lit a fire,' and I pray to God it's true.  Allen is so comfortable with our situation that (to me, at least) it seems he has no ambition; he has long-term goals, but zero motivation to actually achieve them.  And it kills me; I feel like I have to drag this family forward if we are to move at all.  But he really has stepped it up, for the past few days, anyway.  He has made several phone calls and spent a fair amount of time researching treatments, etc.  He is trying to change his schedule again so he will be available to take Benjamin to all of his appointments.  That has been nice, because I'm still just trying to process the whole thing.


I'm glad I was able to go to Stake Conference on Sunday: all of the talks were about the importance of families.  One speaker really struck a chord with me.  She's from Mexico, and she hadn't been asked to speak in English for years.  Despite her deliberate and thick accent, her words struck my heart.  She said that life is about helping each other.  In marriage, two people have to try very hard to make things work.  They must share the responsibilities.  Then she said that unconditional love, sacrifice and prayer can bring us closer together, and give us strength and peace.


I have a coworker whose son is also autistic.  Something said to me on Monday also hit me: you have to understand that you can no longer fit your child into your life; you have to figure out how you fit into his.  That's what I'm trying to figure out: my role in my son's life.  I feel like I'm the physical care-taker: I try to cook a healthy dinner (since Allen's definition of lunch is fish sticks and french fries), I try to keep the house in some semblance of order with dishes and laundry and cleaning; I bathe Benji and put him to sleep, then I wake him up at the crack of dawn to take him to the babysitter, and we start the whole routine all over again.  There's not much time in there for nurturing or playing, so I understand that Benji prefers his dad.  It still makes me sad, because I simply don't know what the future holds, or how I'm going to deal with it.  So, for the foreseeable future, I will just do my best to make sure he's healthy, even if he never says my name.