Sunday, April 12, 2015

MOM Suzy: Autism Awareness Month, Part 2

{Click here for Part 1 of Suzy's interview}

Happy Momster Monday, and welcome back for Part 2 of MOM Suzy's interview. April is Autism Awareness Month, and I am so glad that Suzy allowed me the opportunity to interview her and agreed to share her son Simon with us. I can only imagine how difficult it would be to walk the path of discovering your child has special needs. So many unknowns, so many questions, so many different emotions.  Suzy says she "never knew much about special needs" until their story began when Simon was 12 months old and his doctor began to see some red flags, "which for him were the lack of any words and he didn't point to objects."

At 16 months, Suzy says she "reluctantly had him evaluated and by 18 months he was in early intervention." Autism didn't truly enter the conversation for a while because as Suzy explains, "it is hard to know what are just delays or quirks and what is true autism...but by two I was pretty sure, and by age three he was diagnosed."
Suzy says "Simon was born as he is. I don't ever remember a change and I have learned gradually as he as grown the extent of his struggles, but I have also learned such a great deal about autism and how unique each individual with autism really is. How it affects them each differently. How each responds differently to therapies and diet."

Suzy explains how the special needs community has changed her "in profound ways that I am so thankful for. I never wished for this and I hate seeing my son hurt in a world not built for his way of thinking. But I also feel blessed. There is a pure and honest way of living now. It's liberating to leave the other world behind."

Because of Simon, Suzy feels she has become an even better mom to all her children because she "stopped measuring them against other standards. I see only my handsome, intelligent, creative, kind, open minded and generous boys. I have the family I always wanted."

Suzy says that she's learned to see the world the way Simon sees it, "[he] is a bouncing ball of joyful energy. He has a love for life that makes you happy just being around him. He sees the world through is own autism eyes. I have learned to see the world through his eyes now. It took some time, but it's a beautiful and honest and pure way that he lives."

Suzy, what is a typical day in the life of Simon?
"He has big sensory needs and needs to feel his body move. Not just a lot, but in big ways. He jumps from high places and lands like a gymnast and swings hard and smiles from ear to ear as he pushes his body further. He climbs with upper body strength to be envied. He runs and jumps and rolls and dances and sings all day long. ALL. DAY. LONG. He has echolalia, which is the need to repeat words, phrases and sounds often. It's just the background noise of our life when we aren't fully engaged with him. It's just Simon, he chatters. It's a happy, comforting sound to us now. It doesn't always mean he wants us to talk to him about those things, sometimes it's just for him. He can still answer us or do what we say, all while not missing a beat in his repetitive songs...He can, and does do, many things at one time. He is always going, thinking, learning, problem solving."

Suzy explains that the autism becomes a "problem" when other people come into play. "This is the hardest part for us. Or him. He doesn't understand human social nature. The social rules we all abide by without thinking to fit in. He doesn't know these and he doesn't learn these easily...Keeping him safe is the big problem. People can hurt him or take advantage of him. He will be able to care for himself in many ways, but I think he will always need someone to watch out that he isn't taken advantage of. He will assume people are what they appear to be and say what they mean."

"And so a typical day with Simon", Suzy explains, "is learning this and relearning this daily, even everywhere we go, and although it's a huge exhausting daily task, there is so much joy and love in it all. He is an eager student, a lover of life, a fun and carefree spirit that reminds me to let loose and laugh and run and dance like no one is watching...but they do watch...but we just don't care anymore!"

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 Thank you so much Suzy for sharing so much of your Simon with us; he does sound like such a joy! Momsters, be sure to tune in each Momster Monday, as Suzy will be sharing more about her organization Better Together, what we can do during Autism Awareness Month and always to become "more aware", and she will also be offering advice and encouragement to any mothers who may also be raising a child with special needs.

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