The journey of parenting a child with autism begins differently for each family. Children receive diagnoses at varying times and under unique circumstances; and Autism Spectrum Disorder can look different for every child. However, parents of children on the spectrum all have one thing in common--experiencing that one moment where everything changes in an instant.
The moment in time will be unique to you, and could be the day your child got their diagnosis, the day they were referred to therapy, the day they were born, or another significant time that changed the trajectory of your life together. I’m sure the memory of this moment has already pushed its way to the front of your consciousness.
My moment came when I was in my second trimester of a very complicated pregnancy.
When I was only 28 weeks pregnant my doctor noticed that my amniotic fluid levels were low. A few days later I came back for another check to ensure everything was fine and the doctor found the levels continuing to drop. I was referred to a neonatal specialist in Peoria and traveled there the next day.
After hours of waiting for an ultrasound after a department meeting ran exceptionally long, I was finally given the news.
My water broke at only 28 weeks, for unexplainable reasons, though I had not gone into active labor. The clinical diagnosis put on my chart was “ruptured membranes” and this diagnosis meant that I was not leaving the hospital and I didn’t have any say in the situation.
Within minutes a nurse appeared with a wheelchair, helped me down from the table, and I was wheeled into the ante-partum wing of the Children’s Hospital of Peoria with just my phone and my purse in my possession.
The next few hours of that day are still a blur. My then-husband went back home to Normal to take care of our dogs and gather some things for me. I spent a lot of time talking to doctors and nurses about all of the worst case scenario outcomes they needed to make sure I understood and was prepared to handle should they happen. I was given books from the hospital library that covered various outcomes, premature babies, and even grief. I was told instructions to not stand up, to stay on my back or side in bed, to get a nurse’s assistance to move into the restroom to shower or use the toilet. I was injected with steroids, given a nutrition plan, and an offer for the chaplain to visit.
I didn’t know it at the time, but in the 10 seconds it took for the doctor to tell me the news, everything about my life as I knew it ceased to exist. That moment was a dividing line in the sand between my life before, and my life after. I became a different person, without the time and space needed to even fully realize who that person was, or what would be needed of her in the future. That moment set off a chain reaction of life changing events--I lost my job due to not being eligible for FMLA, I received terrible personal news regarding my family, we had to give up one of our dogs back to the rescue, and more.
After 6 weeks, Hunter was born at 34 weeks gestation weighing just 4 pounds 6 ounces. I’ll never forget the relief I felt when he cried and we knew he could breathe on his own. He didn’t need oxygen but he did need light therapy, a feeding tube, and other care that kept us at The Children’s Hospital of Illinois for another 2 weeks in the NICU. The staff, nurses and doctors there were amazing and became our temporary family for those two weeks.
Hunter had a slight cardiac issue where his heart would skip a few beats every once in a while. I had to learn Infant CPR while we were in the hospital so iif Hunter’s heart stopped beating at home, I could try to start it again. I had never felt that kind of pressure before in my life and the weight of keeping my child alive felt heavier than any burden I had ever carried.
When he was released, he came home from the hospital on a heart monitor and liquid caffeine, but after several weeks of no alarms, Hunter was finally able to stop wearing the monitor and taking caffeine a few weeks after Christmas. His doctors at OSF determined his heart was no longer a concern and we could go on with our lives and start seeing a regular pediatrician where we live, in Bloomington-Normal.
Much like I didn’t know my first moment everything changed would be just one of such moments on our Autism journey, I had no idea it would be only a year and a half later that we would be driving out of town again, this time to
Carle in Champaign to get our Autism Level 3 Diagnosis when Hunter was around 2.5 years old.
We were privileged to have been involved in Early Intervention and Autism services long before Hunter received his official diagnosis. Marcfirst therapists were vital to not only Hunter reaching his early goals from birth to three, but also in my success as a parent of a child with Autism. Marcfirst developmental therapy, occupational therapy, and speech therapy through the early intervention program were life changing for our family.
To learn more about Hunter’s Journey through Early Intervention Services and Marcfirst programing, stay tuned for, Early Intervention Is The Key To Success: Hunter’s Story Part 2.
About the author: Krystle Able is the mother of Hunter, a child who receives our Pediatric Therapy services.
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You may know us as Marcfirst, but we've recently undergone a name change. Why? Because in every phase of life, it’s never a question of if we helped. It’s how we help that truly counts. And how much we helped. Because our clients never outgrow us. And, we never outgrow them. Hence, our new name: Lifelong Access.