OUR STORIES

Michelle and Talia

parent and My Circle of Girls Board Member

My daughter, Talia, was 2 ½ years old when she was diagnosed as autistic.  To say it was life changing would be an understatement.  What originally was a casual decision to request a speech evaluation turned into something I, as a mother, have never regretted.  Those early days were a blur of emotion and head-down determination, researching and learning about autism while lining up supports and services and trying to navigate my family’s landscape with a new perspective.

But there was only so much I could do as an individual.  Attending workshops, reading books, and getting autism information kits in the mail only went so far.  I knew I needed to connect with other families, learn from other individuals, and talk with other moms who knew autism intimately and had walked the path I was setting out on.  Sometimes I found myself not wanting to talk at all about autism, but needing company that understood emotionally where I was.

In addition, much of what was available at the time was limited to individual private services and what the public schools provided, which Talia was too young for.  A number of group programs were on summer hiatus.  I remember wondering why programs fell away for 3 months out of the year when autism doesn’t go on vacation.  It was a very lonely start, this new life as a mother with an exceptional child.

My Circle of Girls has been wonderful in that it meets 12 months out of the year, summers included.  I’ve learned about resources and services and accessed autism-friendly programs and opportunities that I otherwise wouldn’t have known about.  But what I love most about My Circle of Girls is the sense of inclusiveness.  The families I’ve met are unflappable.  We’ve likely seen it all—the beautiful and the challenging—and the little that may be out of our individual realm of experience probably wouldn’t surprise most, if not all of us.  And it’s that emotional support in the form of hugs or laughs or empathetic nods or sometimes no reaction at all to an autistic behavior that I had so needed in those early years.

So while My Circle of Girls is a gift for Talia—one that I hope will continue to develop and grow and provide her with a support system of peers, mentors, and other adults—it is also a gift for me.  While Talia plays, explores, and makes friends in a safe and accepting environment, I can relax and talk about autism, or, if I choose, talk about anything else but autism.  Regardless, my family is in good company.

 

 


NaShonda and Navia

parent

Autism has been such a big part of my life. Its such a fascinating experience to be so interested in this diagnosis and be blessed to work with students with Autism in the classroom. I loved every minute of it. I use to call my class the Forest Gump class…I never knew what I was gonna get. And then the words I had repeated several times were given to me: “Your daughter has Autism.”I can handle this”, I thought. “We got this.” Boy was I in for a surprise. Na’Via is very intelligent but the most challenging aspect of her was her social skills. She wouldn’t let me drop her off at school let alone ride the bus with out months of training. She wouldn’t talk to anyone or participate in anything. She just watched her favorite DVD. I was at a loss. Then one day at work a colleague told me about a group called My Circle of Girls. I contacted Dawn and she informed me it was a social group for girls with autism that addresses their needs in situations such as playing at the pool or eating in restaurants. I know a resource like this is rarity because the parents of young ladies in my classroom were constantly looking for an affordable outlet for their daughters, This group became so much more. My daughter has extended sisters who understand and love her (surprisingly, so do I). “Cool, I have Autism too.”  These words from another little girl were like music to my and Na’Via’s ears. Finally. She now participates in activities that other kids can go to on an normal basis such as swimming, hiking, gymnastics, etc. The activities are at a level of comfort for her and gives her the skills to try new things at school. Her new found confidence has amazed everyone, including her teachers. I am so grateful for this opportunity. Na’Via has been positively impacted in such a wonderful way that I can truly say My Circle of Girls is the guide to her having a productive and satisfying life.


Isadora’s Story

parent Elvira Madueme shares story about her daughter

isadora on stepsLife has a way of throwing you a curve ball, and not quite preparing you for impact. My curve ball arrived on March 13th, 2009, kicking and screaming at 9 lbs and 1 oz. Her first cry was a joy to my ears. After losing my first daughter preterm, I knew she was a blessing. But I had no idea of the myriad of ways she would touch my life.

At the age of one, I could tell my quirky daughter was different and I was concerned she was not reachingher childhood milestones. She refused to eat solids till 15 months old and didn’t utter her first meaningful words till the age of two. Everyone around me said “all in good time” or “all children develop differently”. But my instincts urged me to seek help. She received early speech and occupational therapy at 18 months which helped. But at 3 years old, I was informed that her speech ability was that of a two year old. It was also at that time she was diagnosed with autism.

Autism Spectrum Disorders is a developmental disability that ranges wildly from the awkwardly gifted to the nonverbal and severely challenged. Although I prepared for it, I still cried deeply – tears of the unknown and fear for her future: How would others accept her differences, would she be bullied at school, and would I ever see my daughter gainfully employed, happily married and life fulfilled? After the initial shock, my husband and I got down to business of researching about this increasingly prevalent diagnosis. She presented with classic symptoms including stimming, echolalia, rigidity, and speech delay. We were fortunate to have started her therapies early and were already reaping the benefits. But we had more to overcome. I had come to realize autism was also a way of processing the world. I had to reach into her unique little mind and find out what she was thinking and feeling and more importantly, teach her how to share her world with others.

Yet her world was quite amazing – she loved patterns, the sounds of running water, and chasing her reflection. She would play with her wind up music box for hours without losing interest. Things had to be done in a certain order and a certain way. She showed me she was an excellent learner and had a memory better than mine at her age. At 3 years old, she was reading books at the level of her almost 5 year old brother. She could perform simple math, unlock my smart phone and could navigate a computer and iPad with ease. Though her speech was still delayed and her social skills challenged, she learned through interacting with her brother and mimicking his behavior.

She learned a lot through repetition. So we taught…and taught…and taught. Things that most little boys and girls learned innately, we had to figure out a way to teach her. We had to teach her to differentiate her pronouns, the concept of time, pretend play, spatial recognition, and other abstract concepts. Wow. I never had to teach her brother all this stuff. It was HARD work. And with intentional training, she started to get it – her brain was just wired a little differently. We worked on her eye contact and appropriate social responses. The first time she kissed me goodnight and whispered “I love you Mommy”, I cried deeply. But these were happy tears. Proud, mommy tears.

Isadora turned five years old last month and will be entering Kindergarten with her peers this fall. Once a month, she attends My Circle of Girls, a social group of autistic girls to interact and form bonds we hope will last a lifetime. Parenting a child on the spectrum is not easy, and some are faced with significant challenges. Our journey has been bumpy but the rewards are multifold. She has taught me more than I could ever know – patience, acceptance, happiness in simplicity, and never to take anything for granted. Her autism IS a part of who she is – an unexpected gift to our family.

I love you so much Isadora. My quirky little curve ball.

How many times do we miss our blessings because they aren’t packaged as we expect? According to the CDC, 1 in 68 children (1 in 42 boys) are diagnosed with autism spectrum disorder or ASD. World Autism Day was held on April 2nd. In celebration, I urge us all to share in an act of kindness and acceptance of all things different. You never know how your actions will reverberate in the lives of others.