From last year, my post commemorating the 2nd WAAD: World Autism Awareness Day- “Welcome To Holland”.
Today is the 3rd annual World Autism Awareness Day with a large number of events scheduled in countries around the world.
While there are many events planned in the United States, sadly there are none in Maine today. But for this year, that’s okay- now I know what I need to do for next April 2nd!
As many Blenders know, in the Louise and Snooky household, every day is an “Autism Awareness Day”. And almost every day presents both great successes and frustrating challenges.
More about Jean’s incredible progress below the fold. 🙂Our daughter Jean turns 12 soon; she was first diagnosed with “Autism- ?PDD/NOS” at age 3. I had, as I suspect most parents do, a very hard time wrapping my mind around what autism/?pdd-nos is and accepting both her diagnosis and what I, at that time, believed her prognosis to be.
She also had apraxia. And later, when she could read a bit, we learned she has dyslexia (as do a few of my family members). All of these other words I had either never heard of or knew little about. It was- hard. Very hard.
But as one teacher told me early on, I didn’t have to limit her with what I was finding out- Jean was a bright kid, as well as very determined, and could well surprise us all.
Boy, has she. She’s blown me away.
She was immediately enrolled into a full-time schedule of varied therapies: applied behavioral, physical, speech (at that point she was completely non-verbal) and occupational. There may have been others; it was overwhelming and confusing. Thank goodness for the amazing group of talented people that have helped her over the years!
And me. I owe them all so much.
Even the smartest person in shoe leather (which admittedly I am NOT) suffers a brain shut-down when they get a diagnosis like this on their child. And there is a very real grief process, I see in hindsight and as I have learned about, that one goes through as part of the acceptance process.
What I didn’t know at that time was how the brain works- not mine, but HERS.
The repetition in her therapies did an amazing thing- they taught her brain how to think. How to make important connections ; how to rewire itself. I now she that I am able to teach her , based on her ability to understand how to learn.
Imagine not knowing what communication is or what it’s for, let alone how to perform it. That’s where we were. It was frustrating for her, for us, for our other daughter.
But- fast forward almost a decade. Jean has a vocabulary well into the thousands of words; she is able to read and perform simple math to a 1st grade level with assistance.
Far more important, she is learning social skills that will help her the rest of her life. She is a happy, compassionate, funny kid who has learned, in addition to countless every day activities that most of us take for granted, how to participate in school events, how to make friends, how to speak up in a crowd, how to let her thoughts and opinions be known.
She watches the news and C-SPAN with us (hey, it breaks up her “everything Disney”/ High School Musical addiction!) and participates in our family discussions of the day’s events. She asks really interesting, pertinent questions and with her opinions, I’ve seen her to be a rather incredible person with a big heart and someone who champions others.
I am so proud, amazed and in awe of her.
This past year has been an amazing year of growth for Jean. In addition to her past Special Olympics events of bowling and the huge track and field events, she also participated in the statewide SO swim meet. It was a crowded, loud event- and my girl, who used to be terrified to sit on the edge of a pool, swam with a floaty and an assistant the entire length of an Olympic-sized swimming pool
I cried as I videotaped her accomplishment. And her ribbons hang with her ever-expanding collection. She now has dozens of them.
Jean has grown over 5 inches since last January and now is almost as tall as me. Her elder sister has long since realized that she will be the shorter sister, which annoys her a little- especially when Jean teases Mary about it.
Jean teases MARY. That alone is something I never could have imagined a decade ago.
Our lives are becoming more “normal”, for lack of a better world. We can go to hotels (in fact, she loves them), we can rent a house on the Cape for a week to take our first ever real family vacation. We can drive through and under Boston without a screaming terrified child in the backseat.
She went to a live performance of “Snow White” at the Melody Tent in Hyannis, a baseball game, and spent endless hours playing on the beach. She visited her grandmother (who only met Jean face-to-face briefly last year) repeatedly and showed her all of her favorite toys, chattering away with a person she barely knows.
Jean has also befriended my friend Dawn and her new sister Keori- she loves to talk to her sister on the phone whenever she can.
I am hoping to take Jean on her first Amtrak ride this year. And eventually on a flight- but that may take awhile.
She dealt with the loss of a beloved pet, the one dog on the planet she wasn’t afraid of, who has been a part of her life since Jean was 3. And as of last month, she fell in love with the latest member of our family, my co-pilot and constant companion Bertie (Prince Albert Philbert), a 9 month old Shih Tzu we adopted.
Jean has watched her sister transition from middle school to high school student and has been proud of her sister’s accomplishments. She has been in crowded audiences as her sister has performed on stage; she has helped me maintain our daily schedule and chores when her sister has been at a gazillion rehearsals.
She waited in an ER for 7 hours on a busy weekend, when our regular pediatrician’s office was closed. And she was able to tell the attending physician what was wrong and what hurt. She was able to follow instructions and allow a new doctor to examine her.
She started her periods (something her teachers, therapists and I discussed strategies for over the years beforehand) and that has become absolutely manageable. She can take a Motrin- she can tell me she hurts and/or needs help.
These are all things that many parents take for granted. Not us; for us they are major steps in Jean’s progress. Administering medicine to a disabled person who does not WANT you to is right up there for “absolutely no fun for anyone” activities. Shyness issues are even worse.
She says she wants to go to college and that she wants to help people. As she is in 5th grade, Jean has awhile to go- but she’s looking at her future and making plans.
And when she does go, I will cry- and we will continue to do everything we can to help her, like every day in the Louise/Snooky household- and she will help us. We’re not just a family; we’re a team.