Challenges Of Raising a Child With A Disability Part III

Being a mother has to be the toughest job on earth, and being a mother of a child with a disability is worthy of a gold medal for stamina, patience and mental and emotional strength. 

In my final interview for this 3-part series, I spoke with Janis Gaudelli, who is a single mother of an 8 year old Autistic son named Kellan. Janis and I know each other for quite a few years as we are both connected to the fragrance industry. It was Janis’ father in fact, who was one of my mentors in the business, and even walked me down the aisle when I got married! Years passed since that day, and Janis and I met again at a magazine event in New York one snowy cold day years ago when my daughter was about 14 and afterwards continued to stay connected on Facebook.  One day, I read a post that she would be having a baby. I, along with all of her friends celebrated with our heart emojis and usual congratulations.  But as the years went by and Kellan grew older, I had a sense from Janis' posts that she was a mother of a child with a disability. Signs of Kellan’s having ASD started to show when he was about 3 months old when he was not meeting any milestones for a child at that age and the pediatrician said he had "floppy baby syndrome" and a large head. He was diagnosed with ASD when he was 3. 

Now Kellan is 8 years old, and Janis and Kellen have taken their first vacation together to Disneyland, so I wanted to interview Janis to see how that went, as most of us take it for granted that we just load our kids into the car or plane and take off, whereas a mother of a child with a disability such as Autism has different challenges:  

Ruth: You are just returning from a first trip with you son Kellan, who has ASD (Autism Spectrum Disorder).  What were some of the hurdles/difficulties you had during your trip ?  Do you have any particular advice to others to help them learn from your own experience?

Janis: The two hurdles revolved around food, to be honest.  He eats two foods (chicken nuggets - a specific kind, and NY pizzeria pizza - from a specific pizzeria).  I packed a cooler bag and carried both with me.  I had to find a resort who can freeze these items for me, and had a microwave for me to heat them.  We had to return from the parks at lunchtime everyday so I could feed him.  He wouldn't eat/try anything in the park.  However, I was able to find rotisserie chicken at the character meals, which he was willing to eat.

The other hurdle was my own nutrition.  I traveled alone with him.  While at the buffets, Kellan wouldn't come up with me, so I would leave him at the table with the ipad, hoping he would be so engrossed in his game, that he wouldn't wander and miss that I was gone.  I never made my way through a buffet so fast in my life!  I ate like crap during our stay there, either going hours without a meal (because the lines were too long), or scrambling through a buffet line, grabbing anything I could get on my plate.

Ruth: Being a mother of a child with Autism is hard work….emotionally, mentally and physically.  Can you describe a typical day? 

Janis: Because Autism craves routine, our days are well planned and he is well prepared.  A typical day is waking up beside him (because he wakes at 2AM every night, and comes in my bed), singing the same song each morning ("Rock-A-Bye-Baby"), then pulling him out of bed, because he dreads school so Monday through Friday is an all out battle.

- Then he sits on the couch and I get him breakfast - protein bar and water (for 3 years straight)

- I start getting ready for work.

- He comes in to see me about three times to tell me he doesn't want to go to school.

- I notice his anxiety is ramping up and his breath is labored, so I stop what I am doing, and we go and meditate and breathe.

- I get him dressed.

- We head to school and he's usually crying and scared.

- We do breathing outside of school and he goes inside to classroom.

- When I get home from work, I feed him (chicken nuggets - same for 5 years).

- I give him a bath.

- We do homework if he has some.

- We watch TV.

- And at 9pm he heads to bed and we have a 1/2 hour routine of singing, reading and patting him to sleep.

- I head straight to bed, because I know I will be awakened up again at 2AM!

Ruth: People "on the spectrum" are often very strong and even genius in various ways that others are not. For example, my daughter was particularly amazing at reciting data and details (because her favorite pastime was reading the Almanac) when it came to remembering facts.  What are Kellan’s unique strengths?

Janis: Memorization.  He can read a book or watch a movie and repeat the lines after the first time reading/watching.  It becomes his script.  He also studies the DMV site - so he knows all the parking laws and signs.  When we drive, he tells me all about it.

He taught himself how to sign too...from watching a YouTube video

He has a fascination with animals...and after seeing a picture of a certain species once, he can tell you what it is when he sees it out and about it (at the zoo, or theme park).

Ruth: If you could change the educational system in Kellan’s school to better meet his needs, what would they be?

Janis: I want them to better prepare kids like Kellan for mainstream.  They never once mainstreamed a special needs child.  They send them to the other public school, which is the next step to mainstreaming.  I am fighting that by putting him in a mainstream setting with aide for a subject and progressing from there.  I also feel, schools don't report what they did that was positive often - it's always how they acted out or what they did wrong.  It's disempowering to the parents (and kids)

Ruth:  What improvements in the healthcare system do you wish for when it comes to managing your son’s wellbeing now and in his future? 

Janis: Well, first for insurance companies to accept and acknowledge autistic services.  NOTHING is covered for Kellan outside of the normal/traditions wellness visits.  But alternative treatments and specialists (even many neurologists) do not take insurance.  I also feel everyone wants to solve the problem with medication.  I don't medicate Kellan, except when he has strep throat.  I am more about natural remedies.  I treat his needs homeopathically.  

Ruth: Besides working in the fragrance business, you are the founder of a blog called The Daily Feels that was started as a passion project to reveal the magic behind storytelling, and how truth-based narratives bring people together in the most heart warming ways.  Can you share the link with us so that anyone who would want to read it can? 

Janis: Yes, thanks that's so kind to offer that.  www.ourdailyfeels.com 

Ruth: Does Kellan have a great sense of smell?  If so, what are his favorite aromas? 

Janis: OMG, yes.  I was telling my brother, who as you know is a perfumer, that he has heightened senses.  He smells everything.  In fact, last week, we were driving through a building development, and he said "mom, what's that smell?", and I said, "Hmmm, I don't know- - what does it smell like?" and he said "silver".  I almost drove off the road, because the smell was VERY metallic.  Amazing.

His favorite smells are cookies, my Egyptian musk oil and popcorn

Ruth: Since this is for The Scent Guru Group’s blog, and I write about smell memories. What are some of your favorite scent memories?  How about Kellan’s?

Janis: Scent memories: for me: My grandmother's kitchen while growing up.  In the morning it smelled like baked bread.  In the afternoon, it smelled like her infamous Toll House cookies.  Kellan's - hmmm...I would say this Italian bakery we visit often - when he walks in each time he says "mmm, mom it smells so good"!