Editor’s Note: This interview was conducted via email communication in September 2019. Some of the answers provided by the interviewee were edited to provide clarity for the reader. The integrity of Andrew’s answers was not compromised in the editing process.
Describe the special needs of your daughter
Evangeline was born with tethered cord syndrome (lipomyelomeningocele), which is a type of spina bifida. At 4 months old she required a surgery to detach her spinal cord from a large lipoma on her lower back.
At 3 years old she had a second surgery for cosmetic purposes to remove the large lipoma at the base of her back. Hopefully, there are no other surgeries for the future (the cord could re-attach, but it is unlikely in her case).
When was your daughter diagnosed with autism?
At about 3 1/2 years old Evangeline was diagnosed with autism spectrum disorder. She has been delayed mostly in speech, but due to her spina bifida, she has also had physical therapies to strengthen her legs and improve her walking. She walks very well, but she still does not have the lower body strength and mobility of a normal child her age.
Overall, Evangeline is doing well. Though a bit delayed in certain areas, once she gets the hang of something, she usually excels at it very quickly.
What challenges do you face as a parent to a child with special needs?
My wife and I face many challenges. Evangeline is able to receive most of her therapies at her school (she is currently enrolled in a special needs pre-school program), but she still has many regular appointments with various doctors and specialists in addition to her normal pediatric care (e.g., orthopedist, neurosurgeon, neurologist).
Evangeline looks a little different than most other kids and her behaviors stand out. Because of this, we are aware she may be teased by other kids as she gets older. Though Eva is well-behaved most of the time, she has certain ticks (she might make a strange noise now and then). She has certain rituals too. Some include singing a song she heard in a cartoon when the microwave is on or closing the front door anytime someone leaves our house.
If she is not able to do her rituals or do them the way she wants to, she often becomes distressed and cries. We try not to accommodate her rituals because we don’t want to reinforce them, so we patiently allow her to go through the process and console her when she is distressed.
How do you think these issues will change in the future?
My wife and I also have some concern over Eva’s future. We don’t know how well she will fit in with other people as she gets older and also how she will fit into the workforce as an adult. And sometimes I think about how she will be cared for after my wife and I pass away.
Hopefully there is a lot of time before she has to deal with that (Julie and I are in our 40s), but it is a reality that I still think about. Evangeline has two older siblings who love her very much, so when my wife and I pass we hope they will be there for her if she needs it.
How has raising a child with special needs impacted your approach to the liturgy?
We have not had parishioners with similar struggles approach us, but we have a group of close supporters we are linked to through a retreat called Emmaus here in the Miami area. When Eva was going through her surgeries we had a strong prayer community within the Emmaus men and women at our parish. Our friends at the parish are still interested in Evangeline’s progress. They love her!
Eva has been generally well-behaved at Mass, but sometimes during quiet times she will make strange noises (not like “normal” fidgeting or talking that young kids do) or she may want to sing a song (not so quietly). She seems to be growing out of that now. We have noticed that her peculiar behaviors usually come and then go after a while.
We have had to leave Mass early only once and we have had to take her outside to quiet down maybe a half dozen times ever. Thankfully, Eva shows an interest in the parts of the liturgy including the Our Father and some of the music. I think Mass is just part of her routine now.
What trials have you experienced?
Those uncomfortable moments when Eva is disruptive during Mass and I get the feeling some people around us might be annoyed and not understand she has ASD. Mostly we do our best to be respectful of the Mass and the other people there. We ignore any unfriendly looks we might receive from a very small minority of people there. It is harder when we are away from home and visit other parishes because they do not know her there.
What joys have you experienced?
Seeing Eva put her hands in the prayer position during the Our Father with a big smile on her face and seeing her become enraptured by any particular song during the Mass.
We are united in constant prayer for Evangeline and all other special needs children. God bless you.