Hi! My name is Jackie Puglisi and I live in Leominster, MA with my husband and three children Gabriella (2004), Mia (2006) and Luca (2008).
Two of our children have High Functioning Autism (my oldest and youngest). My son was a preemie (5 weeks early) and had an issue in the first week of life that caused him to stay an additional week in the NICU for a course of strong antibiotics. He struggled to meet early milestones and was not sitting up by himself at a year. We just thought it was because he was a preemie. Our pediatrician decided that we needed Early Intervention. We didn’t see the urgency as our oldest didn’t walk until 18 months and no panic buttons were ever pushed. However, we began our journey with Early Intervention. As Luca began to gain strength and dexterity, we began pre-school a couple of days a week for social interactions. Different things happened at pre-school and we began to question if this wasn’t more than just a developmental delay. Luca did not react to pain like other children, he would play with three specific Duplo blocks all the time, preferred to play alone, did not enjoy or participate in role play, etc. One day I saw him sitting on the couch with his thumbs tucked into his fists and he began scripting TV commercials and that is when it really hit me.
We struggled to obtain a diagnosis for Luca and thank God for our pre-school who helped us push to get services while we pushed for a Developmental Pediatrician’s appointment. I remember when we finally got the diagnosis (after 2.5 years of trying). Luca was put through a couple of hours of testing and then, I was handed a folder with Autism information in it (doctor never stated the diagnosis) and told me if I had any questions or problems in the future, to let her know. I went numb and walked out in a daze. I felt like I was handed an empty box and told to pull the rabbit out. I didn’t know which way to turn and felt like the world was crashing down around me. Luckily, one of the pamphlets in the folder was for the Autism Center. I called the next day and began to get support and gather information to map a path forward.
While we began to roll out services for Luca and learn more, it became more evident that my oldest, Gabriella, also displayed many similar social behaviors and we began the process of having her tested. Unfortunately, her process took over 5 years before we finally received her diagnosis. We were told that she was just a bit behind socially, and then it was she has Executive Function Disorder. We knew it was more than that and continued to fight. I felt terrible because I felt that we had thrown a life jacket out to my son and he was doing great and my daughter was treading water on the verge of drowning and our hands were tied and we couldn’t help her. The center helped us stay the course and fight to get a diagnosis for her. I used the center for recommendations for a neuropsychologist and services.
During all this, my husband developed late on-set Epilepsy that was misdiagnosed for over 6 years. He has had issues with many of the meds they put him on and many of them did not work so, they offered brain surgery as one of the options to try and control his seizures. In researching all the side effects with the surgery, it was looking at a map of the issues my two autistic children display. We do not know if the Autism could be a pre-cursor to the Epilepsy but, we have had the kids tested and it came back as abnormal but not seizures, so we will continue to watch them.
Over the years the Autism Resource Center has done so much more for us. I love the fact that the center no only helps the child(ren) with autism but, the family. My neuro-typical child sometimes feels left out and the center allows us to participate in non-judgmental, safe activities as an individual and as a family. In building relationships with other families in the center, we have learned of many different opportunities available for our children such as skiing, surfing, paddle boarding, gymnastics, etc that we might not have heard of without these relationships. My autistic children have been able to attend camp Havvago and loved it. I was relaxed knowing that they were well cared for and having fun (safely). We also take advantage of the sib-shop so that my neuro typical child has a place to go knowing that others “get it”. We have participated in many of the activities the center offers that we may not have had the opportunity to because of cost or judgment. Many of these activities show our children just how much they are able to accomplish and it is amazing to watch.
I joined the Family Advisory Board in April of 2019. You can find us at many of the resource center events. I look forward to building a stronger Autism community working with other families, new and old at the many wonderful opportunities the center provides!