Meet Jonathan and Nathaniel – or Jonny & Nate – as they are affectionately called. They are sweet, 11 year old brothers that I’ve photographed for Stories of Autism. Stories of Autism is an organization that raises awareness and acceptance of those on the Autism Spectrum. It is through these stories that we can try to understand the struggles that these families face – as well as the joy that the children bring to their families.
From their mother, Michele:
“TWINS!! How exciting, right? As a first time mother, I was thrilled to receive the news of twins when I had my first ultrasound. My pregnancy was uneventful and easy. Jonathan and Nathaniel were healthy newborns weighing in at 6.9 pounds and 7.9 pounds. My life changed forever with the birth of my two angels in August of 2003, but as time went by the signs of “something being off” became relevant. Milestones were not being met and some physical behaviors were becoming a habit.
My concerns about their development were brought to their pediatrician. Most of which were answered by the typical sayings: “Twins a naturally delayed”, “They will catch up, just give them time”, “They will talk when they are ready”, “Sometimes twins develop their own language”. I heard them all and then some. I continued to struggle with the unknown during their first three years. Their behaviors were different from the “normal” child. They refused to eat baby food and eventually started losing weight because of it. Luckily my mother came up with something they would eat that provided nourishment and their weight was stabilized. Little did I know that this new concoction would be the only thing they would eat for the next ten years!
Changing pediatricians meant new beginnings for our family. We were referred to the local school district when they turned three years old for early child development. That referral changed our lives and looking back at it all makes me feel like Alice when she was falling down the rabbit hole. It happened so fast. We went in for our evaluation at school with a social worker and the word “Autism” was mentioned. I remained in denial for quite some time after that initial evaluation, but started to research everything I could about autism. Jonathan and Nathaniel started attending school at the age of three. They started to receive occupational therapy and speech therapy. Two things happened to our family simultaneously the year of 2007 which changed our lives once again. Jonathan was diagnosed with PDD-NOS and Nathaniel was diagnosed with Autism. Both boys were also diagnosed with severe mental retardation. They were diagnosed by not one, but two different doctors from two different organizations. Along with the devastating news of autism came the heart breaking realization that my boys would never be “normal”. 2007 also brought news of a new challenge in our lives which involved Jonathan being diagnosed with spastic dysplasia in his legs, which was the reason he could not walk.
Over the past eight years I have met some of the most compassionate and caring people. The boys graduated from the three year intensive in-home therapy program at WEAP. Those three years were extremely difficult for us as a family, but the friendships and progress we made were worth every bit of stress. The people that worked with Jonathan and Nathaniel were kind, caring, loving, patient, and had an understanding for autism that helped me to be a better mom. It got me involved with their therapy and helped me to play a role in their success. With WEAP the boys were able to grow and learn. The boys are currently in the post intensive phase and receive DLS through the county. Jonathan has gone through four surgeries on his legs, the first was in 2008. His second surgery was a year later in 2009, then again in 2010. His fourth surgery was in November of 2014 (hopefully the last) and is now able to walk without assistance of any kind. His scars are a constant reminder to me of the pain and suffering he had to endure. He is the toughest little boy that I have ever seen.
Jonathan and Nathaniel are nonverbal. We continuously work with PECs and text-to-speech programs in hopes to improve their communication. The boys have their own ways of communicating with people through body language and hand gestures. They have their own special sounds that they make to express their emotions. They are constantly “chattering” throughout the day.
Jonathan and Nathaniel are bright eyed and happy children. They are loving and affectionate. They are intelligent and understand everything that goes on around them. I can sometimes see the frustration in their eyes when they are trying to tell me something. They love to play and laugh. They don’t shy away from physical touch and enjoy giving hugs. They love the Disney channel and dance with the music. They even enjoy watching the news in bed with me in the morning. They love being outdoors and can’t wait to get to the beach in the summer. Water is something they cannot live without, whether it’s playing in the lake or splashing in the bath tub. Their eyes light up with joy when they see a familiar face. They are silly and goofy. They dance like no tomorrow and don’t care who is watching. They are very mischievous and give away their naughtiness with twinkling eyes. They are both full of life and love. They are strong and courageous. Their ability to deal with their everyday struggles gives me added strength to keep being their voice and to keep fighting for them.
Our journey is far from over at this point in our lives, but I would not trade them for the world. We have many blessings to be thankful for and we try to remain positive. The road we travel is bumpy and rough, but we are walking down that road as a family. We have plenty of setbacks and speed bumps along the way, but never get discouraged. I cherish every hug, every smile, and every little giggle that I see and hear daily. No progression is too small and we celebrate every small step they take. They continue to amaze me daily. They are my little angels and I love them with all that I am. Jonny and Nate, your mom will never leave your side! We are in this together, forever!”
Michele, mother of Jonathan and Nathaniel