Northeast Wisconsin
  • Northeast Wisconsin
  • April 2015
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April is National Autism Awareness Month — Our story of awareness and acceptance

“Be who you are and say what you feel because those who mind don’t matter and those who matter don’t mind.” —Dr. Suess

April is National Autism Awareness Month but our awareness is year-round. As mothers of exceptional children, we live in the trenches of the ups and downs of childhood behaviors.

Enjoy another excerpt from my friend and colleague who has been courageous in her advocacy for her son. We are all on this earth for a reason and we all have different ways of doing things. Like my aunt Betty always told me, “That’s why there is chocolate and vanilla.” No one person is alike and this is what makes the world spectacular. Please enjoy.

— Commentary by Meridith N. Starling, CISW, MSSW

Ten years ago our first child, Gavin, was born 12 weeks early and it was truly a miracle that he survived. The next three years of his life involved monitors, feeding pumps, multiple medications and over 13 various surgeries. It took him quite a bit longer to reach simple milestones of sitting up, crawling and walking. Given the extreme circumstances this is not that unusual, is it? Until he did not talk. An occasional babble, but no words.

Could this be autism?

What is autism?

At age 4 he had an MRI of his head that showed parts of his brain did not develop correctly. At an appointment with a neurologist, the doctor quite matter of factly, with no apparent idea that he would be delivering one of the biggest heart-crushing, hope-destroying blows that I have experienced since my son was born, said that there is nothing that can be done, that nothing will “fix” this. Gavin will have extreme cognitive and speech limitations for his entire life.

I sat in the exam room, looking at this man with tears welling up in my eyes, feeling like I was just punched in the gut. Then, he left the room. All my hope of my son being “normal” was destroyed.

I eventually recovered and thought about how my son has come so far, beating some of the most unbeatable odds. I was determined not to let his fight and tenacity to survive be in vain. We would help him be the best Gavin he could be. I will not give up; I will never, ever give up.

We took Gavin to a developmental doctor who said we are lucky. Lucky? Was he serious? He said Gavin has a form of autism and unlike most people, we know exactly why. From that point we started Gavin on an autism program that he still does to this day. He has made progress we never thought possible. He still does not talk but is learning how to use a program on his iPad that talks for him.

My feelings about Gavin’s brain defect and autism diagnosis are complicated. Some days my doubts are soft whispers and other days it is as if someone is shouting into my ear. Some nights I stay awake at night wondering what will happen to him when I die. As parents we are both terrified and brave.

I know the constant movement and obsessiveness, and I know the disappointment and fear. I know the quiet longing that comes from being different because I see it every single day. But I am long past being embarrassed and am all about acceptance.

When you live with someone with autism you use the phrase “for now” a lot.

For now, he is doing well in school.

For now, he is not having panic attacks when he leaves the house for too long.

For now, he is not crying.

For now, he is sleeping through the night.

For now, he stopped flushing everything down the toilet.

For now, he is safe.

My son does not look obviously different, so for onlookers who think I am not addressing my child’s odd behaviors I ask for a little empathy. Please don’t judge — you have never walked in my shoes.

While children with autism may act differently from what others are used to, that is our normal. They still are full of emotion, fierce love, tender hearts and hope.

Hope.

I heard Gavin’s brother once say: “This is my brother, he doesn’t talk but God made him exactly the way he should be because God does not make mistakes!”

Gavin is here, on purpose, even when he is silent.


Celeste Brennan, RN, BSN

Celeste Brennan, RN, BSN is the founder of Happy Face Apparel, Adaptive Clothing & Accessories for Kids’ Special Needs. Inspired by her son, Gavin, Celeste designs and develops clothing solutions for children that keep them comfortable and out of harm’s way, all while preserving their dignity and helping parents control challenging situations. These clothing solutions, as well as safety solutions and accessories that improve oral motor function and sensory control, are available on her website at www.HappyFaceApparel.org. The website also features Celeste’s blog, where she shares stories, imparts humor and connects parents who have children with a special need.

Website: www.HappyFaceApparel.org
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