April Wellness: Autism Awareness: Interview with "Supermom" Jackie Procyk

Two weeks ago I highlighted the non-profit organization Autism Families CONNECTicut in honor of Autism Awareness Month. Today I'm back with one of AFC's founders, Jackie Procyk, who is here to answer questions about the organization and raising a child with autism. In addition to helping run AFC, Jackie is also a licensed social worker and mother to 6 year old twins, Jack and Julia. I've been lucky enough to know Jackie for many years and while I've always considered her a strong role model, I've been blown away by the depth of strength she's shown since her son's autism diagnosis. With the help of her mother, sister, devoted husband and other family members, Jackie has not only created a full and colorful life for Jack, but has become an advocate for the entire autism community.

Thank you Jackie for your candid responses. For those of you who have additional questions, please feel free to leave them in the comments section below.

Where did you get the idea for Autism Families CONNECTicut? What are some of the highlights from the first year?

After Jack's diagnosis at the age of 2, we became incredibly isolated. We were receiving Birth to Three (Early Intervention) services in our home and to be honest, those therapists became the people I talked to and saw the most. They came to our home around the clock and that was our life- therapy, naps, and meals. As Jack neared preschool age, we started looking around for social groups. They were hard to find and as he got older, it became more of a priority. My daughter, Jack's twin, was taking dancing lessons, swim lessons, so many opportunities were open to her. But Jack couldn't take part in those activities and it was discouraging. My mother, Leah Moon, was living in Framingham, MA at the time and she kept telling me about an organization there that provided recreational and social activities for kids with Autism and their families. After a few years, we realized that the Greater Hartford area needed the same thing. Leah was ready to start the next phase in her life and, as a perennial go-getter, was willing to start the organization on her own! My sister and I were right there with her, as were so many of our family and friends who make up our board of directors.

The highlights, for me, are talking to other parents and CONNECTING! We all want to find someone who understands us and our situation. Whether I'm talking to parents at our gym program, or at the Holiday Party, we are sharing and understanding. The next best thing is seeing the smiles on our children's faces during AFC events as they are having fun and experiencing. These kids deserve to have fun, they work so hard all the time to learn and fit into our world. Nothing beats seeing them smile.

You have handled Jack's diagnosis with incredible grace and patience. What advice do you have for parents who have just received an autism diagnosis for their child?

I appreciate the compliment! Some days it feels like anything but "grace" but I have found that Autism has pushed me to be the best person I can possibly be. My advice to parents is to connect with other families as soon as possible. After Jack's diagnosis, I looked up the Autism Speaks Greater Hartford Walk online and found the Walk chairperson. I emailed her immediately, just to talk. Autism parents are incredible people and are always willing to help and disseminate advice and resources. My next best advice is for parents to take care of themselves and their spouse! You know how if an airplane is going down, you're supposed to put your oxygen mask on first before helping others? Well I found out pretty quickly that I am of no use to my son (and daughter) unless I am at my best. And that means taking time out for me. Parents should nurture their own relationships, meaning their marriage, family, and friends. Having a support system is key.

Jack has a twin sister who is not on the spectrum. What is their relationship like? What effect do you think Jack's diagnosis has had/will have on how she views the world?

This is a tough question. At this point, I have to admit that I don't know how Julia's view of the world will be altered, but I know that it will be! I certainly do worry about it. My husband and I have worked hard to help Julia understand the differences in her brother and to make it OK to be different. Our hope is that she will be a person who is accepting and kind, and we've seen these qualities in her already. Jack doesn't give her much socially, meaning Julia has to make all the effort if she wants to engage with him. She is very patient and kind with her brother, but it's not always easy- especially when he has innocently ruined one of her favorite toys. This is a growing experience for all of us. I value the input of teens and adults who are beginning to speak out about living with a sibling with Autism. They can really provide us with some insight.

There are certainly parents who may not have children on the spectrum but are committed to teaching their children to be open and accepting towards those who are different. What advice do you have for these parents specifically in relation to individuals with autism? What information do they need when it comes to integrated social situations such as playdates, birthday parties etc.?

I've had Julia come home from school and tell me that a child in her class was being "bad". We would talk about this, because in my opinion, no child WANTS to be bad, nor should a child's behavior be labeled as such. We would discuss the reasons that the child might have behaved that way. My point is that I hope others will put judgment aside when experiencing a child who is acting less than perfect, especially out in public, and instead allow themselves to think, just for a minute, that this child may be experiencing the world in ways that we cannot imagine. And I'd ask parents to explain this to their children. Allow for discussion of differences in the home. Avoid labels. Our family has been lucky to be a part of a wonderfully inclusive school and they teach that message to all students. Therefore the parents we have met are kind and understanding. Jack has been invited to birthday parties of "typical" kids, where the parents have engaged him even if they receive nothing (socially) in return. They ask if he needs anything and if they can help meet his dietary needs. They talk to him as they would any other six-year-old. This is is SO very appreciated.

The main thing to know about children with Autism Spectrum Disorders is that no one child is the same. It is truly incredible how these kids vary in their symptoms and subsequent needs. Ask questions, and be open to understanding that particular child.

Like a number of parents of children on the spectrum, you've chosen to follow a gluten free, casein free diet for Jack. How do you handle criticism about this controversial choice and continue to do what you feel is best for Jack and your family?

When I am asked this question, I immediately flash back to when my son was 13 or so months-old and he would wake up at night screaming, in a manner that his father and I never experienced. It was truly terrifying to watch him scream, his face contorted in pain. To console him, we would give him milk, a drink he loved. We didn't know any better. I was fortunate to have a sister-in-law who is a Naturopathic Doctor. She asked us if we would consider trying a milk substitute such as soy or rice. When we finally rid Jack of all dairy (casein) and gluten at two-years-old, we saw his eyes clear. His bowels regulated and he could make eye contact. My sister-in-law said that we would need to adhere to the diet for at least a year to fully evaluate its effectiveness. We went for it full force and never looked back. I am a firm believer that the food we put in our bodies completely impacts our moods, behaviors,and health, and what started out as a dietary "restriction" for Jack has led to a health revolution for our whole family. As I stated before, he has made me be the best person I can be, and part of that has been learning about health and nutrition. I've encountered many parents who have tried the diet but felt that they did not see enough change in their child to warrant continuation of the diet. My opinion is that each family figures our what works best for them and I do not judge. Autism parents have so much on their plates, often times we need to pick and choose which treatment we are going to implement and at what cost. It's overwhelming. All I know is that MY child is incredibly responsive to dietary and homeopathic interventions and no one can tell me otherwise.

Do you think there is enough emphasis on services for adults with ASD? What do we need more of?

To quote other Autism parents, "the tidal wave is coming". Our kids are still kids...but they will soon be adults. Who is going to help them? What services will be in place? I think that each of the Autism parents has a strength, an area of expertise that we bring to Autism. I know many hard-working parents who are currently fighting a daily battle to ensure that services will be available to our kids when they are adults. I appreciate these individuals because I can only hope that their hard work will benefit my child someday. I just saw the movie, Wretchers and Jabberers this weekend about two men with Autism, one age 52 and the other in his 40's, who were institutionalized most of their lives. Both are mostly non-verbal, but were eventually given the opportunity to type. These men had SO MUCH to say! They traveled around the world to meet others like themselves and made the documentary. Their main message: just because they cannot speak does not mean they are dumb! And seriously, these men are not dumb! They are incredibly intelligent, emotional, and relevant beings. This is what we need to remember about adults (and children) with Autism. They want purpose in their lives. We need to give them purpose!

A major goal of Autism Families CONNECTicut is to begin addressing the social needs of the teenage population. This is a big undertaking and we need tremendous involvement from parents of teens.

You are a big fan of Temple Grandin, an animal scientist, professor, author and speaker who also has autism. Her inspiring story is certainly a testament to the capabilities of individuals on the spectrum. How can we help ensure the talents of individuals with ASD are recognized and developed to their full potential?

THIS is the driving force behind Autism Families CONNECTicut. We want children with ASD to have the opportunity to find their talents and strengths, just as any other child does. I have heard Temple Grandin say repeatedly to not overly focus on the Autism label. That, had she only focused on her Autism, she may not have found her true passion in life, which is animal science. Temple's mother always pushed her to do more and to live in the world. I know that this is easier said than done, as we parents struggle with each glorious and yet terrifying step of independence that our children gain. They deserve to experience the world and find their passion, yet this cannot always be done in typical classrooms and camps. We need to remember that those with Autism are more than a list of their symptoms. In fact, the people with ASD whom I have met, are some of the most fascinating and talented individuals. As parents, it's easy to get bogged down in the negative- my child isn't doing this, he can't understand that- but we need to climb out of that hole and reach for their skills. We need to find our child inside the Autism and pull them out. They are in there! Never believe for a second that these kids/adults don't know what is going on. They do, and they're dying to tell us...just in their own way. And it's up to us to find that way.

Many parents say they have learned important, often unexpected lessons from their children. What has Jack taught you?

This was a long hard lesson for me, but Autism taught me peace. It's still hard to say "Autism" and "peace" in the same sentence. I hated Autism for a long time. I called it a "stranger" who came in the night and stole my son. I heard other veteran parents discuss the lessons they learned from Autism and I vowed that I would never learn a thing from this heinous disorder. As a social worker, I can identify this as the Anger stage of grieving! But then I learned to grieve fully, and out of that came peace and acceptance. I accept my son for all that he is, but that does not mean that I will ever give up trying to give him every tool imaginable so that he can communicate and be a part of this world. There are still (many!)days that I experience anger and sorrow, and I have discovered that grief is cyclical, only to return when I least expect it. But Autism has taught me to be a warrior of peace and patience. I value differences and imperfections- dropping the veil of perfection was a big lesson. I breathe, and celebrate the small. I make new, wonderful (Autism) friends, and relish in the old friends who have stuck with me. I take things one day at-a-time, sometimes one minute at-a-time. And I wish I had this grandiose ending, some major words of wisdom here, but really, I'm just waiting to see what tomorrow will bring, ready to take it on.