A Dear Mom Letter

It is true that Meghan may never talk. She can kinda say words, but to make conversation will be a challenge for her due to the severity of her autism. However, she is learning to spell and type in her computer everyday, so I know that even though she cannot speak using her voice, she will certainly (hopefully) learn to speak using her written words.

I actually fantasize about this all the time, as you might imagine. I mean think about it, I have never had a conversation with my daughter and she’s 14 years old. We communicate using some words, but mostly by using her communication book with PECS symbols or by gestures. And if you are aware of PECS and other gestures, then you know it’s not the most comprehensive form of communication!! So I am thrilled that her school has supplied her with her own laptop computer and special software to help her learn to write. She still has a long way to go because she doesn’t understand most words, sentence structure, and what it all means; but we are hopeful because she’s smart.

Which takes me to my next thought: I wonder what she will say when she is able to write for the very first time. What will her first written thoughts be for the entire world to see? Thoughts and feelings that have been unexpressed for over 16, 17, 20+ years will finally be unglued and released. What an historic day that will be for her! Understanding that she has the ability to communicate in a way that she never thought possible. To see her thoughts written out before her—a power that she had only known as a freedom for the rest of the world, and one most taken for granted.

So what would she say? This I cannot say. But I, of course, have fantasized that her very first letter might look something like this example that I will call: A.

Dearest mother,

I just want to say thank you for all that you have done for me over the years. I know that you have only wanted the very best for me and for my future and I love you with all my heart. I feel so free and liberated now that I can finally communicate my feelings and innermost thoughts and I hope to write wonderful letters to you everyday. Let’s email, mom, and get to know each other better.

Love always,

Your daughter,
Meghan
Ahhhh! And so, so sweet! And okay, a bit of an exaggeration on my part, but it is my daydream, after all!! And notice how I would finally be able to have a more rewarding relationship with my girl! It’s like my long lost daughter finally showed up one day to say hello.

But then some horrible ugly thought begins to rear its ugly little head (of course, my nasty alter ego) as I sit there and I think, what if her first letter doesn’t look anything like that one… wonder if it’s something entirely different? Usually a mother’s negative thoughts revolve around only a few things: I’m getting married, mom and I’m only 17!! Or I’m pregnant, mom and I don’t even know who the guy is!! Or how about the classic: I hate you, mom. No, I’m no different from those other moms of a growing teenager except that I think that her first letter just might be to the world and revealed while we all await silently and excitedly hovering over her computer as the words are carefully typed out …

Dear Everyone,

Now listen up all you motherfu****. I am so fu**** bulls*** that I’ve been mute for all these years and now I’m not going to take your fu** bullsh** rules anymore….
I will stop right there because I think you get the idea!

Ugh! But, I’m just a mom thinking of all the possible scenarios, like any other mom would do. But what if her first letter looks more like B than A. Then what?

A silenced room?

People scurrying about as quickly as possible trying to trade in her speech therapy for anger management!!?

What would people say to me as I walk the halls of her school? “Hey, heard Meghan can write now!" (Snicker…snicker…snicker…)
Or “Hey what was Meghan’s first word: f*** or bulls**** ?” (snicker, snicker)
This is something only a nightmare could produce, but it has crossed my mind on more than one occasion.

But all I can say in my defense--because a mom always blames herself for her child’s indiscretions (if that’s what we will call this)-- is that Meghan’s very first words were already spoken and were nothing like scenario B, Thank you very much! I actually remember it as clear as day--as all good mothers remember their kids first words… even though she was 7 or 8, not 2 or 3; but nevertheless, it was a lovely story, one of happiness and fun, and…

You see, one day we were enjoying a nice summer day outside playing on the swings and planting some garden. When it was time for lunch, we went back inside for a bowl of Mac and Cheese—freshly made with love from a box--and an all-time favorite, too! (Yup, lots of love here!!) As I was serving her her bowl of “delicious,” as I used to call it (along with a loving hand sweeping back her long blonde hair—and with a smile, of course…), her fork fumbled in her hand and she mistakenly dropped it on the floor. As she bent down to pick it up I heard her first words spoken so astoundingly clear—at least to a mother’s well trained ear, and I turned to her in wide-eyed acknowledgement of what I had just heard. Her first words spoken clearly, appropriately and without anger or frustration, were: “Oh shit!”

So, somewhere along the way she had learned that if a person dropped something on the floor, the accurate verbal response would be: Oh shit.
Lovely! And what? the mom of the year award should be delivered right here please!!

Maybe scenario B isn’t so far-fetched a scenario after all! And a one-way ticket to a foreign, remote land of the lost for me, please!!

The beauty of communication even without a voice.

When Meghan was five years old I had to host an after the wedding party for at least 50 people. My brother-in-law was getting married and my husband wanted to give them a good party. Now I must tell you that I really like weddings. I like the fact that I am witnessing one of the most joyful events in someone’s life and an event that families (especially the bride) had put so much effort in the planning of (sometimes up to 2 years) and without missing a beat as far as making sure that their guests also enjoy in the celebration. Now let’s review the word "celebration" for just a moment, shall we! I am no stranger to a couple of glasses of wine (or better yet, champagne) coupled with good music and a dance floor. In fun company and some good music, I’m usually the first one out onto the dance floor—hey, I like fun, music and dancing, what can I say. Even at my last high school reunion that I’d attended (my 15th, 8 years ago) I was very much the only one requesting music from the DJ and even led the, uh-hum, conga line… Oh, fun times! Hey, you can dress me up…

I think because I was so stressed out with my kids, especially the work involved with Meghan, I really knew that I wanted to let loose and have fun at this wedding—so much that I think I single-handedly scared the bride's side of the family, but what the hay! I remember just moments before that I had decided to dance—no one was dancing—and there was so much tension among the family at my table, fighting, jealous bickering, that I stood up and grabbed the first person that I saw and led them onto the dance floor and the rest of the night was dancing history and no bickering!

By the time the party moved to my house, even the brides side of the family came along (still with that same scared look on their faces) and just watched us eat, drink, dance and sing karaoke (welcome to the family!). Meghan, who was being watched by a good friend was delivered back to us and thrown into the throng of craziness. I had decided that my moments of dancing, drinking, and karaoke singer had come to an end and it was time to play good hostess and good mom, especially since I had a difficult and very energetic autistic 5 year old who did not do well with loud noise and uncontrollable turmoil (a typical autistic trait).

Well clever Meghan didn’t miss a beat because while I thought she would have trouble in the fog of the herd and as the karaoke singers were growing louder and louder, she had decided that she would take matters into her own hands. She grabbed me in the mist of the shuffle and dragged me by the hand and led me into the living room where the singers we grouped together belting out the tunes and dancing up a storm (two attorneys and one business executive were among the loudest of the bunch—and the bride's family had become the unappreciative audience—and even more scared). Meghan led me to the center of the commotion and made me stay, as if saying: sing and dance mom, dance.

So I did and Meghan smiled.

There are moments like these when raising a child with autism. Like witnessing a dementia patient in her moments of clarity. You hold on tight and enjoy them when they come.

The Nonverbal Child

One of the biggest challenges that I’ve faced with Meghan, as opposed to Nick, was that she is nonverbal (here). I've tried and tried to get her to say words—and she would try and maybe say one word, but it was just too tough for her; some verbal approximations and nonverbal gestures are about all she had/has for communication skills, besides—tantrums, screams, pulling hair and biting—ouch!

We use(d) (PECS) communication books and augmentative communication devices (here) —3— to be exact. The only problem with the devices (electronic output) were that they were prone to breaking or malfunction (hence, "3"), especially if…um, the child is a little rough with it—like flinging it across the room—uh-huh!

Most of her tantrums were, of course, due to frustration; not being understood would send anyone over the edge—and I think Meghan was just better at it than most! I do remember when she was 3 and 4—and one of her favorite movies was Charlotte’s Web. I remember seeing her smile when the farm animals were talking and singing. I would sit back and watch her and wondered what she was thinking: huh, the farm animals can talk but I can’t?

How articulate that pig;
what a vocab the goose;
even the goslings repartee
—how hilarious?

Communication Disorder--this is the diagnosis--social inept. The component that make us come together: dismantled, impaired, incurable. The need still holds true for her, nonetheless: acceptance, friendships, relationships; camaraderie, closeness, love. We all need it, even the love incapable. I have always wondered who will rescue her for this right and save her from the lonely damage, other than her mother, father or brother? The promises come from and for her brother already. He has the personality—the skills to rescue himself; he will make it through the lonesome scare.

I wonder if her thumb will always be there?

I can only think that she enjoys communication of all sorts; I believe she gets the idea and that she understands a good deal of what is said to her. Does she think that she’s just an exception? I don’t know.

But she is trying to talk and I know that she is proud of herself when “out pops” a word that everyone can understand—she becomes giddy! But she’s coming along…there’s no time-table here; it’s a slow process from some autistic children and if she’s learning to be patient--very patient, then we must learn to be too.

More on apraxia of speech Here.