We’ve all heard that little voice in our head or felt that nagging feeling in our stomach as we weigh up a parenting decision. For Michele, her natural parenting instinct told her her son Jordon’s developmental delay was more than a short term thing, despite reassurance from his paediatrician. Trusting her instinct and reaching out for help was the turning point to finding the right social, medical and educational support to help Jordon, now 19, thrive.
Michele looks back on her journey and offers her tips for navigating the day-to-day joys, pride and challenges of parenting a child with autism.
Your son, Jordon, was diagnosed with autism at age four. Can you tell us a little about how you came to receive this diagnosis?
Right after Jordon was born, my husband and I read the book, What to Expect The First Year. We followed each chapter, month by month. Jordon hit each milestone. On his first birthday, we read the next book in the series, which covered age one to two. At around the 13th or 14th month he started missing every milestone. He didn’t pull himself up at 13 months. He was a late walker and a late talker.
I knew something wasn’t right. My paediatrician told me not to worry. He said Jordon was delayed because he didn’t have an older sibling to model language or play with. Later on, that same paediatrician said, since Jordon didn’t have a younger sibling, he had no one to teach, thus the delays. But I thought differently.
Our town had a preschool program. One of the special education teachers thought Jordon was autistic. I took him to specialists and at our local hospital, one of them told my husband and me that Jordon’s hearing was not clear. Jordon could hear as if he were underwater. We had suspected this because he often didn’t respond when we called him. We were told Jordon had otitis media (middle ear infection), which meant his ears were clogged, and a simple operation corrected it.
Jordan’s pediatrician believed his hearing issues had led to his developmental delays and still would not entertain an autism diagnosis.
Another doctor tested Jordon and confirmed he had autism.
How did you feel when your child received the diagnosis?
Relieved because with a diagnosis, I could get him help.
How did you and your partner adjust to the realities of what it meant for your family?
I’m a journalist and when I don’t understand something I ask a lot of questions and do a lot of research. My husband, a performer and IT specialist, also dived in and gathered as much information as possible about autism.
In what ways do you find your day-to-day routines are different than those of parents of neurotypical children?
In the beginning, there were speech therapy classes twice a week, social skills classes, and other doctor appointments, all after school. These took the place of extra-curricular activities, although my husband and I were eager to enrol Jordon in sports classes, etc. We’re not into sports ourselves, however, we thought if Jordon was interested we’d encourage it and be at every game rooting for him. We tried sports, art classes and cooking classes, but Jordon either showed no interest, or lost interest quickly.
Jordon’s 19 now. He went to a school for kids with autism starting in middle grade (late elementary/primary school). He’s in a 12+ program for kids who graduated high school and can stay in school till he’s 21. Right now, due to the pandemic, he’s at school remotely.
Since he’s out of district, most of his friends don’t live in the neighbourhood, which means a lot of driving for me!
Managing your child’s needs on top of your day-to-day family and work requirements must be incredibly challenging at times. What advice do you have for other parents facing a similar situation?
- Many schools have after-school programs for parents of children with additional needs. If yours doesn’t, I recommend you start one. Here, we share stories and talk about the challenges of raising a child with additional needs. We also talk about work and try to arrange get-togethers.
- Find something you enjoy doing as an outlet.
- If you’re overwhelmed, talk to a therapist.
What is your way of coping with the emotional and physical demands of caring for a child with autism? What do you do to recharge?
My morning walks are forms of therapy for me. Watching birds in the park on my morning walks lifts my spirits, as does spending time with our two cats.
What support do you call on from outside of your family? How have you located the right services and support?
Putting Jordon in a school for kids with autism helped. The teachers were better able to deal with his ODD (Oppositional Defiant Disorder). It’s not perfect, but when he had a meltdown, the teachers took care of it. We also found a good therapist for Jordon. It took a while to find one. Not every therapist has experience working with children with autism. We finally found one who we all like.
My state (New Jersey, USA) has some programs for kids with special needs. Most are for socialisation. The problem with many of these programs is that a large number serve children with needs that are more severe, which meant it wasn’t a good match.
I’m still looking for a good social skills program.
What should we tell our kids if they ask about a potentially additional needs child?
The truth. Kids are curious. Explain in simple terms why a child behaves differently. Ask your child what is puzzling. Point out the child’s special abilities. My son took standup comedy classes. He can be funny at times. He also loves to read and knows almost everything about Minecraft and Pokémon.
What do you wish you could tell others, but don’t usually get the chance?
My son behaves differently. He stands out and that’s a good thing. He is smart.
Favourite time of the day is… mornings. It’s quiet and I’m usually out walking.
I’m happiest when… my kid laughs and I’m surrounded by animals. I’m an animal lover.
I’m inspired by… good literature and kindness.