Francesca Ciotoli, guest blogger of Pages and Patterns, has two young children, a son and a daughter. Her older child, Christopher, is on the autism spectrum. Recently, Lauren Markham, who works with me to maintain blogopus, creates the artwork, and takes most of our fun and inspiring photographs, spoke with Fran about the joys and challenges of being a special needs parent. Here’s the interview.
Introduction: According to Fran, Christopher didn’t display the typical signs of autism. He was “placid—the easiest baby in the world.” He had language, recognized letters and numbers at eighteen months, and could recite the alphabet forward and backward six months later. Christopher would not wave hello or goodbye, however, or point or acknowledge other people. He rarely made eye contact and slowly seemed to be entering his own world. After a Mommy & Me class during which he (age two) ignored the other children and would only walk around the room, Fran knew there was something was different about Christopher.
Fran and her husband Joe addressed these concerns with their pediatrician, who mentioned autism. Soon after, Christopher qualified for “early intervention,” a state-funded range of services for children with disabilities from birth through age five. When Christopher was two and a half, a neurologist officially diagnosed him with autism.
A year later, Christopher began developing symptoms of obsessive compulsive disorder (OCD). This led to tantrums, rituals, patterning, and a serious—at times paralyzing—need for routine. The team at Christopher’s preschool program referred Fran and Joe to a psychiatrist who specializes in autism and OCD, which deeply affects Christopher as well as the family. Along with Fran and Joe, Christopher’s school teams worked closely with the specialist to coordinate his treatment at home and school.
Today, at age six, Christopher is blossoming. He attends a regular kindergarten class in which he is fully included. He continues to receive services such as speech and occupational therapy as well as cognitive behavioral therapy to help him cope with his OCD.
Christopher’s language and socialization is developing. He has an incredible memory and three-dimensional visual skills in which he can recreate people’s homes and other designs with building blocks.
Christopher also has difficult days when, if a ritual cannot be completed or his routine is altered, he will have a meltdown. Such changes in comfort and predictability appear to be physically painful to him. Nonetheless, he is learning how to express his thoughts and better deal with his OCD.
LM: What is the biggest challenge to raising a kid with special needs?
FC: I guess I would have to say there are three. One, it’s physically challenging. It’s constantly hands-on and I experience a continual lack of sleep. Second, it’s challenging in terms of scheduling: all the planning and organization it takes to meet Chris’s varied needs, the doctor’s appointments, etc., and taking care of all of that in conjunction with having a career, with having a relationship with my husband and my daughter. I almost feel like I live two lives.
Third, there’s the emotional aspect of raising a kid with special needs—coming to terms with it, allowing yourself to go through the grieving process over the loss of your initial expectations of parenthood without feeling guilty. Did I do something to cause this? Am I making the right decisions on his behalf? Am I doing enough? Every year the gap between Christopher and other kids becomes wider.
The challenge is to see him an as individual. For me, this is where it connects to my professional life as an educator specializing in curriculum development with a focus on inclusion. Are we looking at inclusion in terms of kids being in a “race” with other kids? Can Christopher compete? If we look at it that way, then he’s always going to lose. If I look at inclusion in terms of whether he is achieving at his rate, Christopher can and will be successful.
LM: What are the unique challenges of raising two children, one with special needs, the other without?
FC: Again, the first challenge is the physicality of this type of parenting. The other challenge is that my daughter Ava sees everything that’s going on with Christopher. I worry greatly about the impact this has on her and the fact that she is developing while watching all of this. It’s a double-edged sword, because she is also the most understanding, the most compassionate four-year-old I’ve ever met. She doesn’t know otherwise, so Ava’s acceptance of her brother is a thing of great beauty. Ava’s always thinking about Christopher. At the same time, it’s not as if she only worries about him, she just wants to be with him. She misses him when he is at school and she is home. It’s the sweetest thing in the world. He’s just Chris to her. Another challenge is finding time just for Ava. She goes to her own dance class and enjoys similar activities, but there’s only so much time in the day. All parents, I think, can relate to this challenge.
LM: What do you do personally to cope with these challenges?
FC: Part of my way of coping is to combine my professional experience with my approach as a parent of a child with special needs. At first, I set out to learn as much about autism as I could. When we started early intervention with Christopher, the therapists (speech, occupational, developmental interventionist) would say, “You can go do something else now,” but I made it a point to sit through every session. I feel I learned in some ways how to be a therapist. That’s really the ideal, because as the parent of a child with special needs you are your kid’s primary and lifelong therapist.
But you also have to give yourself credit and just keep going. There have been tough days when the following morning I’ve woken up and thought, “We made it through yesterday—Christopher’s safe, we’re all safe—and we are still here.” But I have plenty of other days, too, where the bar for “success” is much, much higher than survival. And we really celebrate those days.
Again, this is something all parents can relate to, but there are challenges I face with Christopher that involve issues many parents take for granted. Many parents of typical children see “the big picture” of their child, they measure progress by big milestones—like when a child learns to ride a bike or write his name. For Christopher, it takes so much more time and effort to do what comes, well, naturally for most other children. There are so many smaller steps in learning to ride a bike or write one’s name. And these smaller steps become milestones in and of themselves.
This is one of the times that I feel lucky—because I get to celebrate Christopher on an everyday basis. Acknowledgment from others about what those of us who parent a child with special needs must face is encouraging, as is patience and acceptance. Still, there is great beauty to what I and my family are experiencing.
Readers, we invite you to post your thoughts in the comment section.
Fran’s next Pages and Patterns post will appear mid-February.