Wednesday, August 5, 2009

The Book of Love

As I was gathering my things to leave for work yesterday morning, my mother in law sat on our couch and chatted away about what she and Brooklyn were going to do that day. She wanted to know where her best walking shoes were. "I read online that she should be able to walk backwards by now," she said. "So I'm going to take her on a walk and we're going to try it."

"Oh, okay," I replied. "Just remember, she's been a little behind on her motor development, so she might not be ready yet, and that's okay."

"Yeah, I know. But she's ahead on some things too. And she only does some of the weird things that Jon did when he was a baby."

I swallowed hard. Jon is my husband's younger brother, who is autistic and mentally retarded. We have not told my mother in law that we are having Brooklyn evaluated by Early Childhood Intervention or that we are afraid something could be wrong with her. She doesn't seem to have noticed that Brooklyn is no longer speaking words. She doesn't know that we are taking her to the doctor this Friday because we are afraid of what this could mean.

I tried to find my words and pushed the lump in my throat back down. "Um. Uh. What does she do that Jon did when he was a baby?"

"Well, you know how she plays by herself, and she gets off in her own little world, and you can't distract her from it? And you say her name and she doesn't look at you or anything? Jon was the only one of my kids who was like that."


"There's a lot of other stuff he did that was off that she doesn't do. So I think she's going to be fine by the time she starts school."

"Yeah." Fake smile. Outside in my car, I make a panicky call to David, and he tries to reassure me and tell me just to wait until Friday. He says things like maybe his mom doesn't remember which child did what. He tells me that all kids "zone out" when they're playing, that it's normal.

Maybe. But maybe not.

I am distracted all day long at work. My fingers think for themselves as they type away at reports on criminals while my mind is racing, playing the "what if" game. At lunch, I look up the age-appropriate milestone checklists again. I read over the possible early signs of autism again. My baby doesn't have all of these warning signs by any means. She still makes eye contact with me, she smiles, she laughs, she talks to herself in her baby language. She doesn't flap her hands or arms or organize her toys into categories. But that big red flag keeps jumping out at me....loss of words. Where did her words go? Why? I try to look for other causes of this, but everything I read mentions that dreaded A-word.

That evening, I leave work and drive across town to pick up one of Brooklyn's prescriptions. I am blaring one of my mix cd's, and Peter Gabriel's "Book of Love" begins to play. The beautiful sounds of the strings fill my ears, and I feel my heart breaking.

Ever since we started trying to conceive, David has had dreams of a little girl, our little daughter, playing a violin. He wants so badly for Brooklyn to play the violin, because I love them so much, and he has dreamed it vividly so many times. It paints a beautiful picture in my head as well. We have been so excited to see that Brooklyn appears to be so musically inclined...she loves to listen to music, she dances to every type of music she hears with a big grin on her face, she seems to feel the notes and chords and rhythms deep down inside her little body. "I can't wait to get her a violin," David said the other night. "I can't wait to hear her play it."

Fear ran through my body as I listened to the song playing, the strings swelling.

What if she CAN'T.

What if she can't do all of these other things that I want for her, that I dream of her being able to do. Doing well in school, becoming whatever she wants to be, getting married, having a family of her own. What if she can't do anything.

What if she's like my brother in law and can't ever live independently? What if, like him, she has to live isolated, trapped as an angry child within a grown-up body, unable to relate to anyone else? What if. Oh. My. God. What if.

I lost it. I sobbed hard all the way to the pharmacy, tears blurring my vision of the traffic, my throat so tight that it was painful to breathe, my chest feeling like it was going to burst wide open. "Dear God," I whispered, "Please let my baby be okay. Please let her start talking again. Don't do this to her. I can't take this."

These fucking what if's, and this fucking waiting game. I am not trying to dwell on the worst possible outcome, and I'm not trying to be negative, especially when we know nothing at this point. I don't want to jump to conclusions or assume anything. But I am so afraid. My mind wanders off to dark places these days, and sometimes I can't bring it back.


MrsSpock said...

I hope the doctor appt brings you the assurance that she is doing OK, and just doing her own thing. Hugs! Waiting is so hard...

Heather said...

{{Hugs}} Hope the Dr Appt goes well.

•´.¸¸.•¨¯`♥.Trish.♥´¯¨•.¸¸.´• said...

oh Amanda how upsetting ...would she rather have not have said ?
Autism presents do differently in so many children.
I also hope the doctor and evaluation brings you the reassurance that Brooklyn is OK and there is nothing to worry about

Beth said...

You've been in my thoughts since reading your post the other day. I'm sending positive vibes that you will get reassuring news at the Dr's on Friday. In the meantime, try to stay off the scary websites and just enjoy your gorgeous little girl's smiles, hugs, etc. Sending lots of xoxo to you both.

edie & ella said...

I'm sorry hun...what a scary thing to be going through. I hope the evaluation goes well and they confirm that she is the brilliant little bug we all know she is!!!
I realize there is nothing that I can say to make you worry less before your appointment. But I will tell you anyway ... since B is the same age as E Squared! Edie OFTEN zones could scream and shout her name and she continues on her merry little way. Neither of my girls have any realy clear words that they say yet...we think they may be saying certain things...but who knows!!! I really think that at this age we can't hold too much value on language because they are just now learning to use their little voices. I know you will get reassurance on Friday...whatever news you get Brooklyn will still be your sweet baby bear!!! And ours too!!!
Please let us know the results...I will be thinking of you guys...sam

Carrie27 said...

Big hugs! You have so many things weighing in on your mind right now, I wish you strength.

Hoping you hear good news tomorrow.

Chickenpig said...

Ok...take a deep breath. Please remember that the biggest issue in autism is not language development, but the pulling inward. If your daughter is making eye contact and smiling at you those are the biggest issues. Children make leaps forward in language, and then slow down.

I went through all of what you are going through with one of my twins. My niece is autistic, so I was very sensitive to the signs. My boy started out of the gate running, saying a 4 word sentence when he was only 11 months old, only to stop talking at around 15 months. He would also get so involved with playing that he often wouldn't respond to his name, or answer questions. I was beside myself! To make a long story short, my twins are 3.5 now, and N is fine. Your daughter is still very young for you to be worried about language development. Those of us who have autism in the family can read a lot into what is actually normal development. It is also almost impossible to diagnose autism correctly until a child is 2. Hang in there...whether she is diagnosed with autism spectrum disorder or not, it is a bumpy road for a couple of years. :(

Sarah said...

((HUGS)) Amanda. We're thinking of you.

Shinejil said...

I'm new to your blog, but man, it looks like you've been through so much in the past few weeks. And it's truly scary to contemplate that our children may not be able to be what we long for.

I hope tomorrow's appointment brings reassurance, hope, and information and that your little girl thrives and finds joy, no matter what.

Kahla said...

I hope that Friday brings nothing but positive news. As a mother, I can only imagine how hard this must be.

E. Phantzi said...

I'm so sorry you are under this terrible strain of grief and fear. I hope it all resolves quickly and positively for your little one.

Mikenjane said...

I'm a lurker from L&F&CA here. So sorry that you're going through so much.

I know it's hard not to worry about autism once that fear has been raised, but the autism spectrum is very broad. Even if your daughter has some form of autism, she might be at a place on the spectrum where she is very functional (high Asperger's, say).

It is far too early to guess what her sudden loss of language really means. Maybe she's having a sudden spurt of her physical development and she's not using her language skill b/c she's busy. My second daughter had only about 10 words at 2 years and needed speech therapy but she was just a very physical child. Language was not her strong point.

Try not to worry too much and enjoy your beautiful smiling daughter!

Aunt Becky said...

Sending you love. Autism is scary, but I promise you, it will be okay. Ben is autistic and easily one of the neatest people I know.

Hang in there.

twoweekwait said...

Here from LFCA and Just wanted to say I am hoping really hard that your appointment goes well. I'm so sorry that you are in a difficult time right now.

Cibele said...

Oh my friend, I felt the pain on your words and I cried with you and said a little paryer for you baby girl... Oh God let her be okay, she will be okay, she will play violin for you, she will say many more words than you can count...many many hugs.

Cibele said...

thinking of you today! HUGS

Liz said...

Ok, it's 10:25pm. How did it go? I'm thinking of you now & praying for peace & calm.

momofonefornow said...

I have been away for awhile and I had no idea what was going on. I am so, so sorry to hear that this is even a concern for you.

My 13 year old nephew has autism. severe autism. I cried while reading your post because I remember how hard it was for me, as his aunt, to find out he had autism. I can't even begin to imagine how difficult it must be as a parent.

Please know that I am praying for Brooklynn, for you, and for your marriage.

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