Sunday, May 3, 2009

Communication Breakdown

"The most important thing in communication is to hear what isn't being said."
~Peter Drucker (1909 - 2005)

One of the many roadblocks we faced when trying to
"diagnose" Abby's autism, was that she talked.
Kind of.
And the two main symptoms of Autism that people/pediatricians focus on is eye contact and speech. Abby participated in both of these things, so people were quick to dismiss our fears.

Abby actually has a pretty large vocabulary. The problem lies not in her inability to talk. The problem lies in her difficulty to communicate using those words. Until starting school this past January, she mostly engaged in what is known as Echolalia. As defined by Wikipedia,
"Echolalia is the repetition of vocalizations made by another person. Echolalia can be present in autism ... Asperger syndrome, Alzheimer's Disease and, occasionally, other forms of psychopathology. It is also frequently found in blind or visually impaired children, although most will outgrow this behavior. When done involuntarily, echolalia may be considered a tic."
It was very frustrating to know that your child CAN speak, but not to understand why she "chooses" to scream rather than use the words you know she has in her vocabulary. I remember many a time losing my patience and sometimes my temper over what seemed like her refusal to use the words she knew. Instead of asking for her drink or for the crayon she just dropped, she would scream and throw a fit. Then when I would ask, "Do you want your crayon?" She would repeat, "Want your crayon?"

Because I didn't know about Echolalia, I viewed this as Abby's refusal to use words. I would insist as she was throwing tantrums that she "use her words" before I would "give in" to her tantrum. Well this helped nothing. It only made the tantrum worse. Because what I didn't understand was that she might know how to say the words, but she didn't understand how to communicate her wants and needs using those words.

I look back on those times that I lost my patience with her, wishing I could go back knowing what I know now. I wish I could go back and be the patient and loving mother that I always wanted to be. Not the mom who had been screamed at ALL.DAY.LONG. by the little girl with the giant scream and the mom whose patience had worn very thin. I feel badly for the sweet little girl trying to communicate to a mother who had not yet learned to "hear what wasn't being said." I still fail miserably at this some days. But thankfully, those days are few and farther apart now. I can only move forward and do better tomorrow than I did today.

This morning I was treated to a rare gift. My husband let me sleep in until 10 am!!! It was wonderful. When I finally did wake up, Abby was seated at the table, coloring in a notebook with colored pencils. She said to me, "Hi, Mom! Want to color? Come sit down in the seat." as she pointed to the dining chair next to her. She didn't scream at me once. When I complimented her on her excellent choice of words, she smiled and said, "Come on, Mom! Let's color!"

I cannot express to you how proud and thankful I am to have heard those sentences from her today. I'm crying now as I type these last words. The relief I feel at knowing that it's possible! By being patient and looking to understand what it is that Abby is trying to communicate when she doesn't use words, she is finding her voice and finally, finally learning to communicate. This makes each scream a little more tolerable and thankfully, like my least proud parenting moments, those screams are becoming fewer and farther apart.

There is hope. Always hope.


Sally's World said...

again, this post is full of information and i have learnt alot. the qoute at the top is brilliant.

i think it has to be so hard, its the connection with my babies that kept me going, the loving looks, the cuddles, everything else paled into comparison when Aaron put his arms around me and kissed me....i'm not sure how strong i would be without that, the same with deion!!!

looking forward to learning more from you xoxoxox

My name is Erin. said...

Thank you, Sally. It really is those little moments that make everything worth it. And when you have children with special needs, those moments become HUGE and so very valuable!

Sarah said...

Thanks for sharing Erin - so beautifully written (as I sit here in tears at my desk at work!!).
Also, beautiful choice of photos, they are gorgeous!

Wendy said...

Thanks for sharing your feelings Erin, it is an inspiration to many!

jrslily said...

Erin, I love your blog. My daughter Elizabeth babysits for a child who we suspect is autistic. It was terrible taking care of her at first. SCREAMING hysterically was her one activity. She did not even want to be held when she drank her bottle. She is actually learning to smile now. I take her on my lap oftentimes and pray that God would heal her. Keep up this good work. It is needed. Blessings, Karen Appleby

My name is Erin. said...

Thanks, Karen! I really hope for that little girls sake that her parents will see that just because she's different doesn't necessarily mean that something is "wrong" with her. They just need to read different books, talk to different people and try different methods. Once I realized that, life got much, much easier. And it continues to do so. Many blessings! XO

Trojan Gayle said...

Erin, your blog is a must read. You provide great insight in the parental life living with autism. I also love your pitures as they add a great dimension to your blog.

I have one question, how well does your daugther interact with other children?

My name is Erin. said...

Thank you so much, Trojan! I sooo appreciate your encouragement.

Abby interacts pretty well with kids. She doesn't play like most kids her age. She is only just starting to engage in pretend play by herself, and hasn't quite figured out the intricacies of pretend play with other people. The communication block gets in the way. She LOVES being around kids and thrives on their energy. She has friends and cousins that she asks to see quite often and she is a gentle playmate. She does GREAT with her little brother. I think they get along more so than most "normal" kids their age. (Keenan so far shows no signs of Autism and I pray it stays this way!)