People often ask me how I knew something was wrong with Jack, and how old he was when we noticed warning signs. Obviously autism unfolds differently for each individual; some demonstrate symptoms very early on, while others grow and interact normally until a particular age and then they seemingly morph into another person altogether.
From what I’ve read and heard from other parents, the development of this tricky disorder is as unique as the minds of autistic people themselves. And so this is our story with a little boy named Jack.
Jack is my second son, and he was born 13 months after our first son, Joey (Public service announcement: You can get pregnant while breastfeeding). My pregnancy and delivery were very normal and he arrived on Mother’s Day; one day later than his due date. A whopping nine pounds, three ounces, he was pronounced healthy and we took him home a day later.
Those of you who know Jack personally may be surprised to learn he did not spring from the womb demanding to know the obstetrician’s birth date or the color of his radio. What he did come out doing was coughing, sneezing, and fussing. He developed congestion around three weeks and battled a seal-like bark and dripping nose from that point forward. Repeated visits to an ear, nose, and throat specialist revealed reflux and eventually landed us in the operating room having tubes placed in his ears and his adenoids removed when he was five months old.
Once he had surgery we were hopeful things would get easier with Jack, and that his constant fussiness would subside along with his perpetual ear infections and reflux. Little did we know the fun was just beginning.
People usually want to know when we knew something was wrong. Back in Buffalo, NY, Joe and I once took the two boys to an Italian restaurant we loved called Rizzo’s. Joey was about a year and a half and Jack around six months. I distinctly remember them both dressed in matching snowflake pajamas, and Jack was sitting up in a high chair for the first time. As we enjoyed a nice meal people stopped to comment on their likeness and closeness in age. All in all, a lovely evening. So why does this memory make me so sad? Because it’s the last time I remember not worrying about Jack.
The next six months were some of the most trying times in my life as a mother. I can’t say there was a light bulb moment where we knew with absolution that he had autism, but I always had a gnawing pit in my stomach and a strong sense that something was just not right. His language wasn’t developing normally. He never pointed or gestured, and he had a difficult time managing solid foods. As commonly found with autistic children, Jack had limited eye contact and didn’t babble or coo. He rarely seemed content in his own skin and fussed constantly – I dubbed him “Tuggy” because every morning I woke to the sounds of his nasally whine.
Early on people were almost tools to Jack. He would take my arm and lead me to the refrigerator or toy he wanted, placing my hand on the desired object. We’d play a game at mealtimes where Joe would point to me and repeat, “Mommy! Jack, look at Mommy! This is Mommy.” He seemed to have no idea who we were. It was chilling.
And tantrums? Whew. All I can say is I should’ve done commercials for Secret Antiperspirant because it was the only thing standing between me and a drenched shirt each time I had to take him to the grocery store or couldn’t figure out that he wanted milk. He could rage and bang on the floor for what seemed like hours out of frustration. And really, who could blame him?
When Jack was about eight months old our pediatrician referred us to early intervention services for an evaluation and we started to become acquainted with terms like “joint attention” and “self-directed.” After many, many painful sessions where I watched through double-sided glass as a speech therapist tried to coax language from this boy, we were offered in-home services for speech and occupational therapy. At this point he was 16 months old.
In the midst of all this, many, many people were adamant that we were overreacting. We heard explanations of how Jack’s older brother was talking for him, of how children develop at their own pace, how he was fine, just fine, and to let it go. During this time I learned a very valuable lesson; I am the only advocate for my children, and if we didn’t fight for Jack no one would. If I succeed at nothing else for my entire life, I will be content knowing I did everything I could for him from the very beginning. It wasn’t easy.
Right about this time our third son, Charlie, came along and when I returned from the hospital after his delivery, Jack strode past me as if I were a floor lamp (OK, a chubby floor lamp in stretch pants, but you get the idea….). My sister came to visit and for the first time someone in my family validated my fear. A she watched him trace the same grout line with his finger she gently agreed that yes, maybe there was something off.
I worked four days a week in those days, and both Jack and Joey were in childcare. One day the center had a photographer come in for class pictures and I went in to see if I could help. Jack was about two at this time, and I remember sweating as I chased him around the playroom, trying to get him to listen to me and sit still. The photographer – a stooped man in his sixties – tried to reassure me by saying “Don’t you worry! I work with autistic children all the time!” It stopped me cold. Although no one from early intervention or the doctor’s office had uttered that term yet, I knew in my bones that’s what we were looking at. Not long after the kindly man from Teddy Bear Portraits connected the dots, our developmental pediatrician also made her assessment: Autism.
Or more specifically, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), a stop on the slippery bell curve of autism. In a nutshell, PDD-NOS is characterized by delays in socialization and communication.
I’ve heard parents of an autistic child describe a period of grieving and bereavement immediately following a diagnosis, a time where they mourned the loss of a normal child. While very understandable, I never experienced sadness in that way, I think because I always knew with certainty something was wrong and that he wasn’t developing normally. Frankly, I was relieved. It was a relief to have a name to the behavior, to be able to explain why he insisted on taking the vacuum apart over and over during play dates. It was a relief that I wasn’t crazy – that something was wrong with my adorable little boy and we needed help. We accepted his diagnosis and forged ahead, getting him as many early services as we could.
Sometimes after I explain our path to his diagnosis, people will ask me what life is like with Jack now. I wish I could say after nearly six years of services, IEP meetings, paraprofessionals, and therapies that he’s shed his diagnosis like a second skin and is cured, but that is not the case. While he’s outgrown many of his earlier behaviors like whining and non-communication, they’ve been replaced by other issues such as anxiety and obsessions. The old saying, “little kids, little problems – big kids, big problems” seems to apply tenfold to Jack. But there is a very bright side to all of this.
The bright side is that Jack is extraordinary. He’s traveled so incredibly far since those early days of tantrums and non-verbal communication, and is steadily reaching goals we once thought impossible. Now I actually hold conversation with the very boy I didn’t expect to speak full sentences. I listen to him play with his siblings and read books aloud, and my heart soars.
As his language improves I get a little peek inside his remarkable mind. Last week he asked me what color I see for Monday. I explained that I don’t see days as colors and asked if he did. Almost confused, he replied that every day was a color and rattled off which colors he associated with which day. I was astounded.
Saying that I’m lucky to know Jack doesn’t do it justice. And the things he’s taught me? Well, that’s almost another essay. He’s taught me to trust my instinct in the face of challenge, to never give up on him, and that Thursday is purple.
So that’s the entire history of Jack….all seven years, seven months, and three days of his beautiful life. I can’t wait to see how the rest of his story unfolds.
Do you have a story of your own to share or want to comment on this article? Email me at firstname.lastname@example.org Carrie Cariello lives in New Hampshire with her husband and five children.