Robyn Coupe has two children on the autism spectrum and writes about her experiences on the blog, Autism in Our Nest. From exploring therapy for her children to experiencing isolation as a parent, Robyn shares a personal glimpse of her family's journey with autism.
Tell us about yourself.
My name is Robyn Coupe and I am a wife and mother of 3 kids. I have my Master’s Degree in Clinical Psychology and have worked many years in the field of Mental Health as a Residential Counselor, Case Manager, Partial Hospital Therapist and as a Safe School Specialist/Crisis Counselor. Family demands have brought me home to care for my family. Two of my children are on the Autism Spectrum. I enjoy writing about autism and my family in my blog, Autism in Our Nest found at http://www.autismfamilypower.com/. I write about autism from a family perspective. As a family, we support and love one another and autism has affected us all. We are a unique family unit in that way. When I am not writing, I enjoy long distance running, reading and learning about autism and ways to help my family.
What was the journey of your children's autism diagnosis, and did you face any challenges along the way?
I think I may have been the biggest challenge that stood in the way of Declan receiving an Autism Spectrum Disorder (ASD) diagnosis. Declan had a very typical development until he was 18-24 months of age. By 24 months, he had lost language and his behavior became increasingly erratic and unsafe. I had a hard time accepting that something was permanently wrong. I felt we could “fix it.” When Declan was diagnosed with ASD, I grieved. I felt like I lost the child, that to that point, I was going to be raising. When I heard the word “Autistic” I thought of the person who could not speak or care for themselves in any way.
I focused my energy on learning about autism, about the spectrum, trying to understand what Declan was experiencing and how we could help him. As I was learning and applying what I learned, I recognized the stress that not only Declan, but our entire family was experiencing began to decrease. This continues to be true. Declan has regained his language and continues to learn and grow in many ways.
Things were much different when Catelyn was diagnosed with High Functioning Autism (HFA). She was having tremendous social problems, was extremely emotional, argumentative, and had a mountain of sensory issues, so we reached out for help. When the clinician informed me that Catelyn would be treated for HFA, my jaw dropped. Autism was the farthest thing from my mind. I was given information, assistance from her therapist and learned even more about the autism spectrum. As a family, we learned about what Catelyn was experiencing and ways to help her. Again, as we all learned and applied what we learned, the stress in the family significantly decreased and best of all, Catelyn was happy.
The biggest challenge we face for Catelyn with HFA is the lack of recognition or understanding of the diagnosis from others. It is very easy to dismiss Catelyn as a rude person with very bad behavior. But Catelyn is not trying to be rude or bad. Like Declan, she experiences the world differently.
I receive a lot of feedback on my blog and on Twitter, which is fantastic. I was surprised that readers found Catelyn’s story to be very relatable in terms of their own family experiences. “Catelyn’s experience sounds just like my son (or daughter).” I find this feedback very encouraging, because it creates a larger voice to create more awareness of the autism spectrum.
What have been the greatest resources or support systems to you and your family?
From the very beginning, we have had wonderful services. When the pediatrician recommended Declan be evaluated at the age of 2, the services began. He began receiving Occupational Therapy, Specialized Instruction and went to a pre-preschool with The ARC. When Declan began Special Education Preschool at the age of 3, he began working with a gamut of services through our County’s Intermediate Unit. On his first day of school I was prepared to hear about the difficulties and problems that he had or caused. Instead the teacher let me know, “Declan did GREAT! He was able to sit in morning circle for a full 2 minutes!” I recognized that meant that for the rest of the morning circle, Declan was not sitting, possibly running rampant around the room – but that was not where the focus was placed. The focus was on what Declan COULD do, not what he couldn’t. I knew then, he was in very good hands.
Catelyn has been involved in outpatient therapy and has completed an intensive week long social skills group. There she has learned so much about herself and how to interact and think about others. Her therapist continues to assist me in learning about HFA and ways to help Catelyn.
For both, the services that Declan and Catelyn have received have been the greatest resources and support systems to our family.
On your blog, Autism Family Power, you tell great personal stories about raising Declan and Catelyn. Why did you create this blog and what kind of stories do you share?
Thank you! I created the blog because for a few years I was writing informational pieces during Autism Awareness month and placing them on social media. The feedback I received about these pieces was that I could take a concept like Echolalia and make it easy for everyone to understand. I enjoyed writing, and wrote a piece for Autism Parenting Magazine called “Why Autism Awareness? Because No One Gains From Silence.” The rewarding feedback I received from these areas encouraged me to continue writing about autism, in informational pieces as well in family stories on the blog.
What advice do you have for other parents raising a child on the autism spectrum?
Raising a child on the autism spectrum can be very isolating. For LOTS of reasons. For us, our house is the safest place for Declan. Declan can be a screamer, and can draw confused or judgmental looks while we are in the community. I cannot take Declan to the park with other moms and just let him play with kids while I socialize with other moms. I need to be right next to him always. If we go to someone else’s house, I again cannot sit and socialize, I need to be with him always. I have had to stay out of the work force to care for him. The isolation can be very depressing.
BUT – I realized I am not alone. There are a lot of people out there, just like me. I have found connections. Even if it is just in reading someone else’s blog about their personal experience. I find those pieces so comforting. Writing was a wonderful release for me, as well. I receive a lot of wonderful feedback from people who read my blog about their autism experience.
My point is, you are not alone. Read, write or just reach out, I have found there is an autism family out there ready to help, even if it is just to listen (or read).
What are your hopes for Catelyn and Declan's future and for the future of autism awareness in our communities?
In the future, I hope Catelyn and Declan are happy, whatever that happiness may look like. I have no idea what the future holds for anyone. All my kids may want to go to college, none of them may want to go to college. They may want to get married, they may not. Autism didn’t take anything from Catelyn or Declan’s future. I know that whatever they put their minds to, they will be able to accomplish.
My hopes for autism awareness in our communities? That autism awareness leads to acceptance and inclusion. At our church, we were told that Declan would need to go into the special needs room. When they ran out of teachers for that room, the doors to the special needs room closed. The church then closed its doors to our family. I realized they were aware of autism, but they could not find a way to accept the differences and allow for inclusion in their environment. I think this is true in many areas of different communities. I hope that awareness continues to extend itself into acceptance and inclusion for people on the autism spectrum.