After a healthy and uncomplicated pregnancy, Jayme Lynn Fummerton was born on September 24, 1984. She was 3 weeks early and came in at 6#, 3oz. In the delivery room, my husband, Mick, noticed how “cute and short” her thumbs were. When the nurses and OB doctor looked at them, they whisked her away to “give her a thorough exam”. That was the beginning of our journey into the unknown.
After giving her a thorough exam, the pediatrician informed us that he thought she had a syndrome but was unable to give us a full diagnosis or even identify “the syndrome” with any certainty. He suspected Rubenstein-Taybi Syndrome, but it was rare and he had not seen any children with it himself. A final diagnosis would have to come later from a geneticist.
With all of this uncertainty came the crashing down of all the dreams I had for her before she was born. I didn’t know how to pick up all the pieces, and the ones I did pick up didn’t seem to fit together anymore. It was a time of depression and grieving that only my family got me through. Jayme was an adorable but incredibly difficult infant. She cried most of the time, and my husband and I spent hours walking and bouncing with her. We would pass her back and forth when we were too exhausted to carry on- all day and all night. This lasted for 2 months when changes to her diet finally made a difference.
As she got older, delays in her development started to appear and we were referred to our local Early Intervention Program. Here, they showed us how to work with her to improve her muscle strength and encourage her. They also provided us with support and encouragement for her future. At 7 months old, we finally got a concrete diagnosis- Rubenstein Taybi Syndrome. By that time, the label really didn’t matter, though. We had absolutely fallen in love with this little girl that was beginning to teach us about patience and unconditional love. Once we got past the first 2 months, Jayme became the happiest baby one could hope for. Her smile was (and still is) contagious and she warms the heart of everyone she meets.
School provided some challenges and a chance for advocacy! She was initially in a “class for special ed kids” also known as a self-contained classroom. Her educational needs were being met, but she was not given the opportunity to socialize with her normal peers. By the end of elementary school, we realized that she had never been asked over for a play date or invited to a birthday party like her 2 younger siblings had. That’s when I learned how to advocate! Inclusion wasn’t a thing back then and I got resistance from the school. I knew of a school in the next district that was much smaller and more inclusive, so we had her transferred. Being with peers was not only beneficial to her, but to the other students as well who all loved Jayme and were eager to include her in many things.
Fast forward to Jayme as an adult….. She is now 34 years old. She graduated High School with a modified diploma, walked at graduation with her peers, has a paying job in our community, and has lived in her own apartment (with a lot of supports) for 7 years. All things we never dreamed were possible for her UNTIL we learned how to dream!
The journey you have just begun will be filled with many twists and turns, but one thing to remember is YOU ARE NOT ALONE! Although each child that we have been given is a unique blessing, many of us experience similar things and we are here for you! My words of advice: Never give up on your child or yourself. Never limit your child’s abilities. And never hesitate to reach out to another parent! Together we are stronger!
Mick, Jill, and Jayme Fummerton
William Harrison Cianci was born Oct 2003 in Connecticut. He was developing well according to doctors and parents. When Billy was 22 months old, he was diagnosed with Autism. His parents started to do a lot of research, reading, and educating themselves about the diagnosis. Alongside a doctor who specialized in Autism, Billy's parents did diet modification, medication modification, behavioral therapy, speech therapy, and occupational therapy. When Billy started school, the teachers and his parents worked hard to establish a plan for his academic development.
Fast forward to July 2017. Billy's dad lives in Oregon and mom lives in Connecticut. They both talked about Billy's future and the new plan was for Billy to move to Oregon to live with his father Nick in July 2018. When his dad and I talked about Billy moving to Oregon, as a step- mom with adult children, I became scared yet determined to give us as parents an opportunity to develop a relationship with Billy. Both Billy's father, Nick, and I started to look for resources in the community, reading about Autism, and talking to other parents with experience with Autism. We talked to co-workers with OT/PT/Speech T degrees and doctors who could manage his medications. We worked with his mom for over a year to try to make that transition with minimal negative impact to Billy. We began our "nesting" phase. Nick and I dreamed of this wonderful child that would join our family. We prepared his room. We bought the toys, and gadgets that we thought he could enjoy, we made white boards with schedules, pictures, and chores. We bought the specific kind of foods that Billy was used to eating. We child-proofed drawers and closets, and placed alarms on doors for safety. We were skyping regularly and keeping in touch with Billy weekly.
As July 2018 is getting closer, and closer, we are getting more and more excited, and hopeful of a wonderful addition. The time is here, we want to throw him a big welcoming party, but we are concerned of overwhelming him. We want him to know how much we love him and how excited we are to develop a relationship with him. Billy is 14 years old and has arrived to our home. He looks confused. He looks tired. He is not in his environment despite all the preparation we did to make him as comfortable as possible. Billy's mom stayed with him for a week to help us make that transition. During this time, his mom is sad, she is grieving. Billy is home for a month, Nick and I are fighting, we are anxious, we can't sleep well, we are having difficulty communicating. We don't agree with the parenting we are doing. We lost our freedom, we feel like we can't be spontaneous. We have difficulty with Billy's energy, with his biting, and with his meltdowns. We are nervous to take him to the store due to his unpredictable behavior. Our other children are feeling neglected, left out, not important enough. Grandparents are trying to help, but they themselves are scared to do the right thing or to provide the right care for Billy.
Wow, what happened to our ambition, to our excitement, to our "strong bond"? Nick looked overwhelmed and I did not know how to help. I kept yelling at him because he was not doing enough. He looked at me for support that I could not give. We were so caught up in how we were failing each other that we did not stop to look at how wonderful Billy was adjusting. Nick and I sought counseling, not because our marriage was in trouble, but because we needed to find support that we were doing ok. We needed to work out those feeling of denial, acceptance, depression, anger, and bargaining. So here comes the positive side. Nick and I started giving each other Kudos for the small things. Giving each other room to be imperfect.
We started to slow dance in the kitchen again. We slowly started to take the focus off our failures and we started focusing on Billy's progress. We started to accept that these imperfect parents had a perfect child. We started to be consistent with Billy and each other. We were taught in counseling how to paint a picture to Billy about how his day was going to go. He became less anxious and we became less anxious. Billy uses assistive devices to communicate. He signs a few words, but he is so fun. He jokes in his own way. He loves to eat. Lee's mar far chicken with pink sauce is one of his favorite meals. Loves to go for runs, swings and go swimming. He has a PSW (Personal Support Worker) who we adore. She takes him for long car rides and shopping for his own snacks. Billy has accomplished a lot of "firsts".
Our FEATT family provides sensory friendly movies at our local theater. Billy loves the movies and the popcorn. Another "first" is car races/monster trucks. His favorite movies are Fast n the Furious. Our FEATT family has a bounce house at the YMCA. Billy burns a lot of energy and calories at the bounce house. This is a good time to mingle with other parents and show support to one another. He cheers for his classmate at basketball games. His teacher Nate reported to us that Billy has made amazing strides in school. He enjoys his school and classmates. Science class is his favorite subject and running on the track. He is learning to fold laundry and fixing his cereal in the morning. He has gained several pounds and sleeps over 10 hours a night. He is a happy kid. Nick and I are having the most fun being his parents. We keep in contact with his mom, and Billy has a Facebook page where we upload pictures regularly so his friends/family from the east coast can be update of his new life. We are eternally grateful for an opportunity to reconnect with Billy and watch his future unfold.
Nick, Corina, and Billy