If A Picture Is Worth A Thousand Words...

I came across this photo the other day. It might seem an odd choice, but it has always been one of my favorites. I was taking this photo of my daughter as we were trying out dresses for her kindergarten graduation when my son jumped in. She was 5 years old and had been diagnosed with autism only a few months prior. My son was 4 at the time. I think I love this photo so much because for me, it really captures a moment-in-time representation of the differences between an autistic child and a typical child. Both are smiling, and happy, but one is standing with her eyes covered not wanting to draw attention to herself and the other is saying, "Ta-da! Here I am! Look at me!"

 



Autism & Adolescence in Girls

I couldn’t tell you with absolute certainty whether or not there is any difference in having “the talk” with a young typical girl versus a young autistic girl as I’ve only had experience with the latter. My daughter has a fear of aging as she relates it to having to be separated from me so she was very reluctant to confront the changes that were happening in her body whenever I attempted to broach the topic.

Over the course of a number of months, I made many unsuccessful attempts to open up the dialogue with my daughter. When it became apparent that her body was changing rapidly and that there was no remote control I could use to pause or activate the slow-motion mode, I knew that I would have to change my approach if I was going to prepare her for the inevitable. I decided to switch gears and treat this like I would if I were giving a presentation at work.

I started out by asking myself the following:

1) Who is my audience?

2) How can I deliver this information in a way that will reach them?

3) What kind of incentive could I use to motivate my audience to eventually participate in an open  conversation to review the information shared?

Next, I carefully thought about each question and answered them, as follows:

1) My daughter is uncomfortable engaging in face-to-face conversations about topics that relate to her personal feelings or issues she considers private. She tends to do better starting out with written communication and feels more confident when she has some control over the what/when/where of a situation. At only 9 years old, she is also rather young and therefore, information should be delivered in a manner that is age-appropriate.

2) My daughter is a voracious reader so I decided that this would be a great way to reach her. She would have the control to read at her own pace, at the time of her choice and in the privacy and comfort of her bedroom. In order to find the perfect book, I did research online and reached out to other mothers of young girls for their input and recommendations. Eventually, I chose “The Care and Keeping of You Collection: A Collection for Younger Girls”. It is a great set designed for young girls that includes two books, two companion journals and a personal calendar. The books and journals address not only the physical changes but also the emotional changes that a young girl may experience as she goes through puberty. Since my daughter likes puppies, I purchased a set of 6 small, magnetic bookmarks with puppies on them that I used to mark the sections I felt were the most critical for her to read. I also bought some fun pens to use for her new journals.

3) Finally, I decided to throw in a little incentive (or bribery…call it what you will) to get her to actually crack open those books so I bought her $15 gift card to Barnes & Noble (her favorite store). I then put the book collection and the pens in a gift bag and gave it to her privately one night. I wouldn’t say she was especially thrilled when she opened it, but she agreed to let me show her how I had marked each of the sections that I wanted her to read. I told her that she could read it at her own pace and that I would not pressure her. Now it was time for the incentive; Since we don’t have many opportunities for one on one time, I told her that if she had read through the sections I had marked and agreed to talk to me about it, then we would go on a Mommy-Daughter date to Barnes & Noble so she could spend her gift card and get a chocolate milk with whipped cream from Starbucks.

One week later, we were having our date and I was able to ask her what she’d learned and answer questions that she had. We enjoyed our Starbucks and reading time following our conversation and afterward, went shopping for some of the supplies that she needed to get started.

Fast-forward a few months and she was pulling me aside to tell me that she’d experienced her first menstrual period. She could not have been more calm about it! I was so impressed with how she handled herself when it finally happened. I tried my best to make her feel special without making it a big deal since she doesn’t like that. I bought her a special little purse for her supplies to keep in her backpack, a little lip balm she’d been eyeing at the store for a while and cupcakes that I told her, between us, were to celebrate her awesomness at having dealt with everything so maturely.

This experience taught me a lot about tailoring my parenting to the needs of each individual child and that they will be more receptive to communicating when I speak their language.

Can’t stop time no matter how hard we try!

Wendy

If I could take “It” away…would I?

I have had those days with my daughter during which I feel completely helpless, frustrated, and I hate to admit it, imprisoned by her autism. I should probably clarify on the imprisoned part. I just mean that while I am all for encouraging her to push beyond her comfort zone (that’s how we grow, right?), there are times when it's unavoidable that as a family we must sacrifice to meet her needs. On some of those particularly tough days, I often wish I could just make “it” go away. But then, there are moments of brilliance; so many moments when her uniqueness and her incredible mind blow me away that I wonder, “If I were to take away the “bad" would I be taking away all the "good", as well?”

Of course, if I could lessen the obstacles that my daughter, and our family, face due to her autism, I would. I’d give (almost) anything to lift her social fears, to even out her emotions, to reduce her anxiety...to just make life a little easier for her; but would taking away her autism make her less "her"? That often leads me to ask myself, "If a cure for autism were announced tomorrow, would I want it for my child?" The answer is that I truly don’t know. Every day I pray for a cure. Every day. Yet, there is a small part of me that prays I never have to decide to proceed with a cure or not because my firstborn, my sweet girl, is not some kind of experiment with which I’m willing to gamble the results. She is a complex human being, wonderful and loved just as she is.

So, I ask you this:

If there were a cure for autism, but the findings showed that 15% of those administered the cure suffered significant regression or became catatonic versus 85% being fully “unlocked” from their autism, would the potential benefit outweigh the risk?

If there were a cure, what would the odds need to be in order for you to choose it for your child?

I ask because autism isn’t just some illness to be prevented. It isn’t the flu or chicken pox. It may not define who our children are, but it certainly is part of what shapes who they are, how they think and how they perceive the world.

Maybe it would be no different than prescribing medication for anxiety or depression where it just kind of takes the edge off improving clarity, coping skills, etc. All I’m saying is that there is a lot to consider. My hope is that there will someday be a way to prevent autism from developing in utero and that any cures developed for those presently living with autism would not eradicate the essence of their spirit.

Big questions, not enough coffee.