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.

Show Me Life

Picture catch-up.

I'm not very good at holiday décor around my house. I did find these cute glitter hearts at ye olde Big Lots.

1/20

I got a Happy Birthday e-mail from Rodizio, offering a free meal. So we went on the 21st. Delish.

1/21.  Best.  Brazillian Food.  Ever.

On Saturday the 22nd, the siblings got together at Rachael's house. It was a very nice day. This is a collage of some good pictures I got. There was a lot of purple; I must have missed the memo.

Happy Birthday to me.

This is from Sunday 1/23.  I had been released from Primary the week before, but Benji has been coughing for a while, so Allen went to Sacrament Meeting and I went to Relief Society (I have been called as the R.S. pianist again).  I took this picture of him after church, and I thought it turned out cute.

1/23

On Monday, Benji didn't want to take a nap (until about 5pm, of course). I tried to wake him up, but he was just OUT. So I did what any loving mother would do . . . I messed with him.

1/24--a very sleepy boy.

The rest of these have stories to go along with them, but I need to wrap this up. So here's the gist: I got a sweet Thank-You card from the Primary kids. It made me cry a little bit.

1/25

Awesome Birthday lunch from Zupa's.  1/26

Blogger is giving me grief with pictures.  Sorry it's sideways.  1/27

The Children's Center, 1/28

Terrible picture, but it captures the disgusting essence of the smog. 1/29

Darn you, blogger. 1/30

I'll write more soon, but I needed to get these pictures up.  à bientôt.

I'm Getting Older Too

It's my birthday. As far as birthdays go, it has been pretty good. I don't need gifts, though my Mom drove down from Logan, and we went to lunch at Zupas and to dinner at Cheesecake. Food-wise, it doesn't get much better than that.

I know I need to post some pictures, and I have had a lot of thoughts and planned blog posts running through my head, but I really need to sleep now.

So thanks to everyone for the lovely birthday wishes. Thanks for the wonderful sibling get-together we had last weekend. And thanks for taking the time to come visit me, Mom. I truly am blessed.

It Takes a Little Time Sometimes

Somewhere along the way I lost track of the days.  It doesn't help that my camera is off by one day, so I'm not entirely sure which pictures came from what day.  So I'll try to post them more often; I can usually remember two days . . . but then, I can remember the lyrics to hundreds of songs, but I can't tell you what I ate for dinner last night.  "Feelin' good."  (Can you see Drew Barrymore's head bob?)

This was taken yesterday.  It is another goal of the year: to keep this plant alive.  I have yet to nurture something green for more than a few weeks, or until it turns brown; whichever comes first.  I'd really like to help it thrive.  Plus, it's a pretty low-maintenance plant, so it just might be possible.  I purchased both the plant and the cute pot at Ikea, but I really do need to get some more soil for it to grow in.  Tomorrow!

Envious?

And here's today's picture:

Allen is usually asleep when it's bath time/bed time for the boy, so I'll hang out with Benji while he's in the tub (hence all of the bath pictures).  Since he's a 'captive audience' (e.g., he can't move very far), I'll try to sing songs with him and go over letters and numbers by writing on the little magnet board and showing it to him.  Sometimes he'll point to the letters and say what they are, but he really likes to indicate what he's reading with his feet (e.g., kick the board without getting in trouble).  Whatever.  So anyway, I wrote this for him, held it up to him and asked him what it said.  He told me, clear as day, "cow."  I was so excited!  He read the entire word (not just the letters) and pronounced it correctly.  And I know he knows what a cow is, so I can see all of these things coming together.  He's making connections and he's finally figuring out how to express them verbally.  He did the same thing with the word "water," but he's still spelling out "cat" and most other words.  We're trying to do some sign language with him as well.  I wrote the word "ball" on the board, and he did the sign for it.  That's so cool to see.

I know it seems silly to parents of children who are developmentally normal, but it's a big deal to me.  I wish I could have real conversations with my child, where he would understand what I'm saying and respond appropriately.  I think it's kind-of an exponential curve with him.  It has been very slow starting out, but now that he knows a few words, I think it will come a lot quicker.  Our appointment with the Children's Center is coming up next week, and I really hope they can help us to help him.

Days Go By

This is just some random thoughts and some pictures

Benji has started pointing.  Actually, it's usually slapping what he's looking at (he's beating up on his French Picture Book as I write), but sometimes he'll use one finger.  I'll go over some letters and numbers with him, like I'll write "ABC" on his little magnet/erase board, and he'll point to the letters and say what they are.  To me, that's a pretty big deal.  He has such a hard time communicating that I get really excited when he points to something.

Deep in Thought (from 1/16/11)

He's also starting to 'parrot' some words back to us.  I've heard him say some words very clearly, like "chair," "cat" and "boy."  Usually he'll latch onto one word for the day, and he'll say it over and over again.  He really likes the word "pet," though I'm not sure he knows what it means.  He also likes to say "water," though that comes out as "wadder."  "Dog" comes out as "dod" and "duck" comes out as "dut."  He's learning, and he's slowly becoming more and more sure of himself.  He still won't say "mom," but I know he'll get there eventually.

This picture is from today.  The helicopter was taking off just as I was leaving work, and I happened to have my camera.  I wish I would have made the exposure time a little longer to get some movement  (i.e. blur) from the helicopter blades.

 

 

Life Flight (1/17)

That's all I can think of for today.  Must sleep.