Awareness. Really it doesn’t really happen until it happens to me or someone I know and/or love. Unfortunately, it takes that to get my attention. I think it goes along with believing it will never happen to me (and/or someone I love). I always think of the statement that “Admittance is the first step to recovery.” Well, Awareness is the first step to knowledge, understanding, stepping out on faith, and holding onto hope.
I can tell you the exact room we were sitting in at the physician’s office and we had a scholastic book order with us to pass the time. We went for a routine check up and came out hearing autism for the first time. Well, Sam was about three and I GOOGLED for more awareness. We quickly determined she was wrong and moved forward aggressively working on speech. The checklist for diagnosing was lengthy and I could rationalize every answer on the paper. We changed doctors – isn’t that what anyone would do if they don’t agree OR don’t like the answer? Oh, in hindsight….
Sam started Kindergarten and I can tell you all the “signs”…
Sam started first grade and I can tell you all the ‘signs”…
Sam started second grade and we could no longer ignore the “signs”… I walked into parent teacher night and I knew…and though you should never compare your child, I knew… I knew that if we did not due something about the AWARENESS we would do him no favors.
I had been AWARE of differences, but rationalized them out. Awareness is just the first step to seeking knowledge.
I remember taking the test that I had to complete for Samuel’s diagnosing – hundreds of questions and I just answered questions sitting at Monroe Muffler waiting for my Envoy. But once I read the questions, they were then stored in my mind and I was more AWARE of what they were looking for. I had to go back and change many questions – and not in the direction I wanted to answer them. I had not realized what I believed to be his quirks were not “normal” – everything from his food choices, his language, his delays, his coordination. And though after reading the manual and going through the process, I knew and was AWARE of the diagnosis, it did NOT make it easier to hear. Because all of the testing, all of the education plans, etc.. just pointed out everything that was weak, not normal, and needed fixed. I was AWARE that on that day, things changed.
AWARENESS by itself isn’t enough – it is important to take action. That is true for everything…
- A dear friend became AWARE of a lump but had she not taken action for work-up it would have continued to spread and worsened the diagnosis.
- of the number on the scale is not enough if I don’t do something to change it.
- of a stop sign but not stopping is risking my life unnecessarily.
- that someone is hurting but not reaching out to let them know I care defeats the awareness.
- the Christ died on the cross and is risen but not asking him into my heart will not get me into heaven.
AWARENESS can be heartbreaking. Every time we had an individualized education plan meeting or update, the focus was always on the weaknesses. Often, I have to explain why he is different (to make others aware). Probably the hardest AWARENESS is when we are with other kids his age and he is so different (which is okay), but he is often rejected. Then it is important to also point out all his strengths to others and just embrace that they have no idea what they are missing out by not getting to know him. It is my job to EDUCATE.
EDUCATION is imperative for any awareness – for the number on the scale I need to educate myself how to change it… for a friend who is hurting how I can reach out to them… etc. I have to educate myself on autism so I can better understand.. so I can find opportunities to improve his life… so I can educate others.
AWARENESS can be a gift! Once I am aware that things are going to be different than what I expected, it can be freeing (remember my rule is expect nothing and never get disappointed – I learned this multiple times). When I had a boy, I expected the stereotypical sports, boy scouts, etc. Had I stuck to those expectations, I would have tried to make him “fit”. I would have missed out on the many other blessings that he brings to our life because I would be stuck in the mourning of what may never be. I would have missed out on the imagination, angry birds coming to life, the hilarious conversations, the ever ending train tracks, etc.
AWARENESS also means letting go of “the box”. I look back and am so thankful we delayed the “label” of autism, because it would have been easy to let the diagnosis determine his path… instead of letting Sam be Sam and determine his limits. It is like I use to tell my cancer patients, only look at the “survival rate” if you determine to be part of the survival number. If your mindset becomes part of the death rate, you are already defeated. So although we are aware that Sam is 1 in 88 (or 50 is the latest) – I do not dwell on that because he is too unique to fit in a statistic.
However, magic happens when others become AWARE of Sam and his quirks. When I hear others talk about how he makes them smile, his honesty, and his imagination, it is then AWARENESS is a blessing. I have an incredible friend who always says everyone needs a Sam in their lives! When we went for the PSSA testing and teacher who worked one-on-one with him spent time with me on the last day saying how smart, polite, and caring, etc… he was – my heart swelled.
But, this is true for anything in life – once I am aware I have an issue – it means I need to
- Take action on the awareness
- Educate myself and share with others
- Prepare for the heartbreak
- Let go of expectations and limits
- Open the heart to endless possibilities
May I be intentional everyday on being more aware and taking the steps it requires. Today, we wear BLUE in honor of Sam (although he would have chose orange or pink) for Autism Awareness Day. But everyday is AWARENESS that God blessed us with an amazing son whose life has no limits.