By Jennifer Baker – TACA Mom
Reeve* was born via c-section at 38 weeks with an APGAR score of 9. Reeve was a relatively healthy infant who ate and slept well and met his developmental milestones until approximately six months of age, when his development hit a plateau. Reeve didn’t respond to his name and had a gross motor delay; his head circumference increased from the 75th to the 99th percentile between the ages of six and 12 months. Reeve would babble and had a few words, but would say them sporadically.
At 18 months, we witnessed a regression in language and behavior; he seemed more withdrawn and became silent. The whole second year of Reeve’s life, he was a mouth-breather and was constantly congested. He suffered from seasonal allergies, chronic ear infections which resulted in nine courses of antibiotics, constipation/diarrhea, eczema, and other skin issues.
My sister – who knew my son had autism when I was in the hospital giving birth to my daughter, but couldn’t tell me as a sleep-deprived mother of a nursing newborn – began clandestinely sending me hints about how some of Reeve’s behaviors were similar to that of a co-worker’s son who was diagnosed with autism. I researched autism and read that behavioral regression and lining up and stacking objects were common characteristics.
I started asking more questions of Reeve’s caregivers and observing his behavior more closely (he was our first child, so our context for what was “developmentally appropriate” behavior was non-existent). I saw that Reeve would engage with his adult caregivers but would rarely interact with or maintain close proximity with his peers with the exception of one (who, as fate would have it, ended up being diagnosed with autism several months later). When I casually asked his daycare providers if Reeve ever lined up or stacked objects at school as we had never witnessed this at home, I unexpectedly received a confirming response: “Yes! He does it all the time!” My heart sank and I felt the blood run out of my face in that instant.
After a couple of weeks of researching, I pushed my son’s pediatrician to do a referral for an evaluation by a Developmental Pediatrician; we received a diagnosis of PDD-NOS at 24 months and ASD & global delay at 27 months.
After Reeve received his preliminary diagnosis, I went home and cried with concerns about my son’s future racing through my head. I remember saying, “I just want him to be happy.” I had taken “D(iagnosis) Day” off of work expecting the diagnosis, so I went to a salon and spontaneously cut off my hair in an act of catharsis. In retrospect it was somewhat symbolic: my former life no longer existed, as I would then dedicate the rest of my life doing anything and everything I could to help my son become as independent and happy as possible.
From that point forward, I took off running: I researched, joined several online parent groups, and met like-minded parents. I asked questions of Warrior parents who had been in the trenches for years. Within a month of being diagnosed, we started to detoxify our home, went GFCFSF, scheduled an appointment with a local biomedical practitioner, and initiated an intensive ABA program.
Reeve recently turned five and I am constantly amazed by his progress. Through the years we continued to modify his diet and supplements and have continued to do various interventions as his needs and labwork dictate. Reeve is not recovered, but recovery continues to be our goal and he has made tremendous progress.
While he continues to have expressive and receptive language challenges, Reeve went from being completely non-verbal to now talking and being able to express his needs and wants, comment, make jokes, and tell me he loves me. Reeve is doing well academically and is only minimally delayed in this area. Reeve went from parallel-play social behavior to engaging with his peers and asking them to play games. He is potty-trained and went from having intractable gastrointestinal issues to making normal daily BMs. Reeve looks healthy and, most importantly, he is a happy and loving child.
In terms of the bad and the ugly, we went from a financially secure family to a family with mounting and crushing debt; money is a constant worry. Time is elusive between work, driving to/from various appointments and therapies, dispensing supplements, grocery shopping, filing insurance claims, cooking, and everything else involved with maintaining a household and nurturing a marriage. This life has been very isolating from family and friends because of our lifestyle changes and a general lack of time and money, and the fear and anxiety about the future is ever-present. I remember very little about my daughter’s infancy and also feel that we simply couldn’t enjoy our son as our child for the past couple of years because we were so focused on treatment – we feel that autism has robbed us of priceless memories.
However, in terms of the good, I am incredibly grateful to have a marriage that has become stronger because we share the same goal. We are more educated about health-related issues and our family is very close and healthier due to the significant lifestyle changes that we have made in support of our health; our priorities have changed for the better. I have also made many lasting and supportive friendships with other parents who understand this life, as well as therapists who have made an impact on my son’s life. I am grateful for the medical professionals and educated parents who dedicate their lives to helping children like mine and sharing their experiences and/or expertise to the benefit of our children’s health.
Reeve has grown into a beautiful little boy who loves his Lego Super Heroes, movies, and his family – especially his sister. I am optimistic about Reeve’s future thanks to the support of organizations like TACA who spread the word that autism is not only medical AND treatable, but to never give up HOPE.
My Bio: I am the mom of two beautiful children and a wife to a loving and supportive husband living in the Midwestern U.S. I ended a lengthy career to care for my son and to attend graduate school to become a Board Certified Behavior Analyst (BCBA). I hope to one day have my own therapy center that promotes both traditional therapies, complementary and alternative medicine to holistically support a child’s learning through improvements in overall health. My goal is to give back to children diagnosed with autism, as they are my heroes and inspire me to be a better person every day.