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!!

Star Reward System for Autistic Kids

Meghan will be coming home today for an entire week stay. As I am running around the house cleaning and doing errands to welcome her home, I’m thinking how happy I am to have her home for her first full week in 4 months, but I am also worried, too. I’m worried that she will get too used to being home for the week that it will be much harder for her to get back on routine. Meghan is profoundly autistic and it is usually very difficult and time consuming to motivate her in doing almost anything: getting her up and dressed; taking a shower; going out on a car trip; eating at a restaurant. I was visiting one of my favorite blogs, Teen Autism, and her most recent post was about "how to motivate autistic kids." Fitting, right? It reminded me that in addition to her visual communication book (or pecs), of which she has one for home and a few for school, we also have instituted a star reward system. Even though we pleasantly set-up her face-board of activities for the day that she must follow using these pictures (simple use of velcro on the face of a three ring binder), she usually takes the pictures off and replaces them with pictures of things that she'd rather do. Hence, our difficulties in motivating Meghan.

Even though this is her little game of obtaining power and being very stubborn, it could still take up to an hour just to get her to fulfill the first activity on the board, like taking a shower. School has developed this star reward program to use to “motivate” her to, not only, to take a shower, but to get to it within a reasonable amount of time.

How it works:

There is a velcro section on the face of her communication notebook for little pictures of stars. (just like for her other communication pictures). Every time we need her to do something, like taking a shower within a certain period of time, then she will get a star velcroed to the face of her communication book. After she earns a certain amount of stars (we have her earning 5), then she will get a reward, like TV time, because she loves to watch TV or a video. It is recommended that you start off with only a few stars—like three, so that the child will see rewards more quickly to understand how the system works.

This is working for us so far, but it is not a guarantee for a long period of time--at least it wasn’t for us. We had actually tried this reward system once before, but after a period of time, it stopped working for her. Meaning that she was no longer motivated to earn her rewards and was content to just sit in her room all day without rewards. But this is just the personality and nature of my daughter, the most stubborn one in our house. But clever too!

So we are trying it again and if it stops working, then we try something else.

My other son, Nick, doesn’t even need a reward system. He does everything I ask him to do: Takes a shower when told, will get dressed when asked, takes out the trash, gets the mail out of the mailbox, cleans his room. He is just a boy who likes to do what he is asked to do to please us. I actually think he likes being told what to do, even though he plays up the whole “doing work” thing with a loud groan, but then does it with a smile on his face. Funny, huh?

You know what psychologists say, most kids like to be put to work as it makes them feel useful contributing to the household … I must say, even Meghan will help with cooking and emptying the dishwasher on occasion w/o even being asked.