I often think about how lucky I am to have 3 healthy children. I’m sure many of you reading this right now are nodding your head and counting your blessings too. At my 20 year high school reunion, I was catching up with a friend who mentioned in conversation, that she has a 5 1/2 year old son who is severely autistic. I was caught a bit off guard not knowing if I should ask questions or nod in sympathy. We exchanged phone numbers and I looked forward to talking to her more in-depth once we had a quiet moment.
I want to share Keri’s story because I think we can all find something important from her experience. Keri was and still is an incredibly positive and bubbly personality. Her energy is contagious and she is always fun to talk to. She met her husband, Jay, when she was in her late 20′s and they settled down got married just like most of us have done. It took a while for the couple to conceive, but when they learned they were expecting a child they were ecstatic. Keri says, “When you are pregnant and expecting your first baby, you never imagine that anything will be wrong with YOUR baby. You have normal first-timer worries, but you still imagine your life with a healthy child.”
Labor and delivery were normal and the new family left the hospital full of joy and exhaustion. Jack was a colicky baby. Since this is a common occurance there were no red flags. However, as Jack approached the 3-month mark, Keri became concerned with Jack’s “flat affect” in other words, no expression. Keri had several friends with young children and she noticed that by the time their children reached 3-months they were becoming increasingly expressive. She began to fear that something might be wrong with her son- but was reassured by her pediatrician that all children develop differently. But, with each passing day, the pit in her stomach grew. Her gut kept telling her that something might be wrong with Jack.
Six months after the birth of her precious son, she was in the market and stood in line behind a mom with a little girl who was engaging, babbling and interacting. Outgoing as she is, Keri started chatting with the mom and asked the age of her daughter. The woman replied that her daughter was 6 months. Keri’s stomach sank. She couldn’t believe the difference in their children. Jack wasn’t rolling, grasping objects or engaging with others at six months. At that point, she started on a mission to find out what was wrong with her son.
She scheduled appointments with her pediatrician (again) and a neurologist. Both of whom observed that something wasn’t right, but were unable to diagnose her son with anything specific. Keri suspected autism at this point, but both doctors told her it was entirely too early to diagnose autism. She was referred to a specialist at Children’s Hospital in Orange County (CHOC). She and her husband were frustrated and confused by the lack of diagnosis thus far, so they decided to make a 30-minute video of their son, trying to capture some of his behaviors that they found troubling.
In July of 2004 they headed to their scheduled appointment not sure what to expect, their son was just nine months at the time. They met with a doctor who talked with them for about 15-20 minutes then said, “I know what is wrong with your son.” On the edge of their seats, they waited to hear the diagnosis. “Your son is autistic.” Confirming Keri and Jay’s suspicions, but delivering the news that no parent wants to hear. Jack’s autism was so severe, that even at nine months experts were able to see the telltale signs.
From the day that Keri and her husband heard the news, they began taking action. All evidence has shown that early intervention in autism can produce amazing results. At the same time, Keri admits that she sucuumed to extreme sadness verging on depression. “It’s one of those things that you think you might wake up and find it was just a dream.” Keri doesn’t want to come off as selfish but I think we can all agree, as parents, we have those dreams of watching our children of play soccer or heading off to the first day of kindergarten, graduating high school/college, getting married and having children. Not to oversimplify…but I know that I look forward to all of those common milestones in my kid’s life. Keri was not only faced with the reality that her dreams would look different from what she envisioned, but also the responsibility of caring for a special needs child for the rest of her life. When we talked, this was a focus of our conversation- she doesn’t get to look forward to these milestones with Jack. Each time she stops to think about it, she feels like she is back on the edge of that “pit of sadness”. She wanted to drive home the point that her sadness is not like being “bummed out”. She equates it more to a feeling that her perfect baby and dreams for that child have died. At the same time, having an autistic son doesn’t stop Keri and Jay from living a happy life- they continue embrace each day and find reasons to smile and have fun.
Jack’s case of autism is unique. Even with early intervention, progress has been slow. He can’t use utensils, he isn’t potty trained and he is unable to communicate his needs. The family has left no stone unturned including special diets, occupational therapy, speach therapists: you name it, they have tried it. One of the many wonderful things about her son include the fact that he does show plenty of affection. Keri is relieved that he is so loving because it makes parenting him much easier and completely rewarding. As he has grown, caring for him had become more difficult. Another concern that Keri has is when the day comes that Jack over powers her. It is scary to think about how difficult her job will become.
After several months of consideration, Keri and her husband decided to have another child. Their main concern was the odds of having a second child with autism. They were given odds of 1 in 7 when they consulted a genetic counselor. But they really wanted to experience having another child. Sam in now 2 1/2 years old. With each milestone that Sam meets Keri is amazed and relieved that he doesn’t share his big brothers diagnosis. Needless to say, she is a very busy mom.
Keri continues to struggle with bouts of sadness- the question “Why me?” still pops into her head. Two things have helped minimize her sadness: focusing on the present day and building a friendship with another mom in a similar situation as hers. As a matter of fact, having a good friend who also has a special needs child has made an amazing difference in Keri’s life.
Parent’s of children with special needs deserve to be recognized and appreciated every day. I can’t imagine how much patience Keri and Jay need to muster to endlessly anticipate Jack’s needs. They rarely get a break from his care and they are unable to travel as a family since Jack is over stimulated by anything new. After talking to Keri, I have a greater appreciation for the work and energy that it takes to raise a special needs child. Instead of complaining that my kids want to go to the park, play basketball or ride their bikes (again) maybe now I will smile and say, “All right, let’s go!”