Sunday, April 19, 2015

MOM Suzy: Autism Awareness Month, Part 3

Catch up here:
Part 1
Part 2

Hello again, and happy Momster Monday! When we left off last week, Suzy shared so much with us about her son Simon, and a glimpse into what their days entail with raising a child with autism. To continue on with Autism Awareness Month, I asked Suzy to share more about the organization Better Together, which she created with the help of other moms just over two years ago. Suzy explains: "I had the idea rolling in my head for at least a year. When I was in the waiting room at a therapy session, I sat there getting to know the moms. This was the first time I really connected with other autism moms in a social way, and I told them I had this idea to create a club of sorts...because my son wasn't able to do the things his brothers did, and I wanted that for him...even if I had to create it."

Suzy says that Better Together is a name she "dreamt up" a year before she found a real purpose and meaning for what it would look like, "we were better when we got together". Suzy describes the early days of Better Together, "our kids played all that summer. We did great things, more than just play dates. We focused on the skills our kids lacked and needed to practice."

Since those early days, this original group has changed and grown a lot. Suzy explains, "I found another great mom that was very knowledgeable and had been an autism mom longer than me. We just clicked and our goals were the same. We built projects and webpages and activities so quickly because we wanted to see these things in place for our kids. Soon, we found that the parents were benefiting just as much from being 'better' together as our kids did from the social activities. Our support system online grew and became a constant hotline of sorts...a place to find answers from other parents locally."

What sort of activities is Better Together providing? They have special activities for teens, socials and coffee events for the parents, and the parents offer up their talents for activities such as guitar lessons or craft nights. They also have outings within the community in order to practice dealing with sensory struggles alongside one another. 

This growing local community has "made a world of difference" for Suzy. "It's such a positive place to share knowledge with each other as well as just be there for the hard times. I can't imagine my life without these wonderful families.

The website is and serves as a resource to give families access to up-to-date resources in the Tri-Cities, WA area. The website also provides a step-by-step guide for parents who may be new to the world of autism, and Suzy says that they are wanting to get this out to the medical professionals, "so that our families can feel more empowered early on with steps they need to take with their child."

"The best thing about Better Together", says Suzy, "is that we are a parent-run program. We know our community. We know what we need and we try to empower parents to create those opportunities for their kids, if it's not already out there in the community. We don't have time to wait, our kids needs us now."

Suzy, what can we do during Autism Awareness Month (and always) to help bring awareness and support to this community? 
"Ask about autism, be curious, and learn what it means for us to have a child with autism. Learn what it means to be an adult with autism. Listen, even if you don't fully understand. See that parent that needs encouragement to keep bringing her child church, to the library, to the park. Support local causes that are trying to make a real change to bring quality of life for our autism community for the long term. Just be aware that this community shines brightly. All you have to do is want to see it. We are proud of our children, and we want a chance to brag about them too. I only know my own story. There are so many different families that have struggles I only read about. Some are harder stories, some are very brave, sleep-deprived families out there doing the best they kind to them. Be aware that the hidden disabilities are hard to explain and so often we just don't say anything. So remember just to be kind and patient with people out there in the world...some of us are literally just hanging in there, doing the best we can."

What advice, or words of encouragement does Suzy have to offer mothers who may be raising a child with autism?
"It's not easy news at first. Grieve. Allow yourself time to feel that. Some dreams will have to change, but then see the blessings that this child is. You have to accept autism first, though, it's part of them. They see the world differently; it can be almost magical. I love many things about the autism that is a part of my son. some is hard and I don't love...allow yourself to be sad. It will come up again at new stages...seeing the kinders go to school brought it back for me...but only a little. My beautiful, joyful son is here and I'm happy to be his mom. Know that life will be a new normal, and you can be happy."

For resources, of course Suzy recommends Better Together website, and Better Together can also be found on Facebook - just search "Better Together an autism social learning club".

MOM Suzy: Autism Awareness Month, Part 1

Instead of waiting for Momster Monday, I've decided to introduce you to the MOM for April today...and there's a reason why. April is Autism Awareness Month and today is World Autism Awareness Day. Today, I'm introducing you to Suzy Higley, who has a son with Autism.  
Suzy is 40-years-old, mom to 3 boys, from my small little hometown of Othello, Washington and she met her husband in 6th grade!
"I met my husband John for the first time in 6th grade. He was annoying and adorable. We were sweethearts in Junior High until I broke his heart on Valentine's Day! Then 3 long years later we reconnected when I got nerve enough to ask him to a dance. We were together ever since...engaged at 19, married at 20. College together. Kids. House. Now we will celebrate 20 really wonderful years married this July 1st."
Suzy and John have 3 sons: Josh, Nathan and Simon. Her oldest son Josh is 16, and suffers from anxiety, depression and ADD. "Something that I wish I had known more about in his early years. It's been a hard transition for him into his teen years, but we are working through it with help from his doctors", she says. 

Nathan is 14 and has mild anxiety and ADHD. Suzy explains that Nathan "has managed well on his own...he found ways to cope well on his own, and is successful in school." 

Simon is 7 and has a more severe form of autism. Suzy further explains, 
"He is minimally verbal; meaning he has a vocabulary he uses for specific things, but struggles to talk. He has a better receptive language but still has Auditory Processing Disorder, so communication is very hard for him. But he is so smart and patient and finds ways to get his point across. He also has ADHD, which means he's a busy body with huge sensory-input needs and a very busy mind that is hard to keep focused. Our children, while all three are much shyer than me or their dad, still don't fall too far from the tree. I am ADHD myself and anxiety has always plagued me...but I manage. My husband as well; so it's in the genes."
As a SAHM, Suzy was able to spend many "years volunteering for preschool co-ops and PTA in the eleentary years for my older two boys. My youngest is now almost 7, and while I'm still busy volunteering, my path has changed a bit from PTA to autism."

I asked Suzy for the opportunity to interview her not only because she has first-hand experience with autism, but she has also been very active within her special needs community.
"Two years ago I started an autism social learning club called Better Together, with some other moms. It grew from a small group of moms trying to create opportunities for their kids, into a full supportive community of more than 245 members. We are now a program of the Arc of Tri-Cities [Washington], where we will be able to do even more for our special needs community."
Since 1954, the Arc of Tri-Cities has been a provider of services to individuals with intellectual and developmental disabilities, and now serves more than 1,400  individuals each year. All of their services help to advance skill levels, promote inclusion, integration, and socialization, and encouraged independence. 
What would Suzy like everyone to know about those with autism?
"Autism IS a spectrum. It's a big broad curve with lots of colors in between. Some on the spectrum can marry and work, some struggle more and need much more support throughout life. All have the same desire to pursue a happy, purposeful life. Never judge a book by its cover. Assume the desire for friendship and ability for higher learning even if the body language fools you."
In regard to the spectrum, Suzy's son Simon is more impacted, so she can only speak from experience with him. Simon doesn't speak much, but she encourages others to:
"Say hi anyway. Slow down and just see him under the anxiety. Assume he's listening and needs time to think it over and decide to trust you or not. Allow him that. Remember that he is working hard every day to fit in to our way of thinking just to be heard. It's a frustrating world, so be patient and understanding."
Today, this month, and always, Suzy encourages everyone to:
"See the complexity and beauty that is autism. It has its difficulties, but their special and unique ways help them see things clearer and more intense than our brains do...and that's why there is brilliance and beauty in the autistic mind. Appreciate the differences that make us ALL human, and make room for us all in school, in work and in life."
Suzy wears many hats, apart from her role as wife, mother, and co-founder of Better Together, she teaches "Exploring Art" at the Arc to adults with special needs, she loves the coast, and enjoys rearranging furniture regularly.
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Click here for PART 2 as we learn more about Simon, 
how and when Suzy discovered he was autistic, and learn more about Better Together.

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.