Q&A with Courtney Barnum-autism parent and advocate

June 19, 2012 Margalit Sturm Francus

Courtney Barnum, aka Liam’s mom, strives to raise autism awareness through her personal stories on her blog titled “My as-some son’ as well as on her Facebook page “A Legion for Liam‘.When she is not busy homeschooling her son, Liam, who has autism, she loves planning budget trips to take with her family.She also enjoys art, music, antique car shows and investigating paranormal activities.

When was he diagnosed, and how is he affected by his autism?

Liam is my miracle child. He is the baby I was told I may never have, and yet here he is.
I’ll never forget when they laid him on my chest after birth, I cried and cried, and thanked God for letting me carry this beautiful, healthy baby to term.
Liam just turned six and was not officially diagnosed until he was five. His first diagnosis was Asperger’s, ODD, OCD, ADHD, and SPD. He then had a nervous breakdown of sorts, and we took him to another doctor for a second opinion, and his diagnosis was changed to Autism, ADHD, and SPD.

From the beginning, Liam was always different.
He hardly slept. He was up every hour on the hour for almost all of the first year of his life. He hit his milestones on time, but at about 15 months he started to ‘back pedal’. He wouldn’t let anyone touch him. He wanted affection on his terms only, and only by his father and me. He started having night terrors on a nightly basis. He had a speech problem, but we assumed it was because he had been ‘tongue-tied.’ He became a super picky eater.

Getting a doctor to listen to our concerns was hard. We were told he was too young to understand, he was fine, he was normal. At four, I knew better, and I started to switch doctors until I found one who would listen.

Right now Liam is most affected by the ruminations that come from his autism. He is a ‘dweller’: it could be something that happened a year ago, and out of the blue Liam will be upset by it.
His sensory problems are also of great concern. He is bothered by loud noises, to the point where going into town means a meltdown. He also does not like large crowds; they make him very nervous and on edge.

What are your reasons for choosing a destination?

When we select a place, the first factor is how much it’s going to cost. We are on a very fixed income, so the price is always a factor. We look for free or low-cost things to do with Liam.
The next factor is distance. Liam does not like to be far from home. He gets very edgy on overnight stays, so if we do it, we stay only one night away.

Who is the decisive force in choosing a destination?

I usually make the decision. I always run it by my hubby, but ultimately, it is me who makes the decision. He’s pretty easygoing, and says, “If it’s free, it’s for me!”

How do you cater to Liam’s needs when you plan an outing or trip?

Liam is always the priority. When planning an outing, the first thing I do is check his medications. He takes an herbal medicine called Calms Forte, and it works perfect for his anxiety.I always make sure I have plenty of that, and we always give him one before we take him someplace new or someplace with a lot of people.

What do you regularly pack?

The next thing I check is his sensory backpack. I make sure his earmuffs for noise and all his fidget toys are in there. I then pack him food and drinks. He is a super picky little man, so I always take his meals with us.

What do you always forget to pack?

I always forget to pack something either myself or my hubby needs. I am always so focused on what Liam needs, that I sometimes forget some things we may need. It’s usually my inhaler. Hubby tells me I need to wear it as a necklace.

Are you an over-packer or under-packer and why?

I am an over-packer. My family teases me because a one-night stay for Liam is, at least, four bags of items. I have always been over-prepared when it comes to him.

What is your lodging of choice?

We mostly choose day trips because as I said, Liam is very nervous when it comes to staying away from his home. If we make an overnight trip, we camp. It’s more affordable, more fun, and Liam loves it!

What has been your worst lodging experience?

The worst thing about camping is the weather! Last year we were all set to go camping (a great family place only six miles from home) and it started to rain harshly. It was awful! Our site was already paid for and reserved, so we went despite the storm. We were going with friends, and in the end, we all splurged on a cabin. It was a lot of fun and disaster turned into great memories.

What amenity you can’t do without in a hotel or other lodging?

Bathrooms are a big deal to Liam. They must be clean! He is very picky about bathrooms. So I would have to say, to him, the bathroom is a big factor in staying somewhere.

What is your transportation of choice and why?

Our family car, though not the most beautiful, is how we travel. Liam would never tolerate a bus, let alone a plane even if we could afford to fly.

Where do you like to dine when you travel – fast food or sit-down restaurants?

Liam’s favorite fast food diner is Burger King. For two reasons: the Nuggets and the indoor play place! He is a very picky eater, and chicken nuggets are a staple in his diet.

We do not go out to eat often, as Liam does not sit well. We usually get food to go because Liam in a restaurant is not easy. First of all, he is all over the place. He has to check everything out! Sometimes that means checking out what others are eating. He has a hard time sitting still.

Even at home, we’re lucky to get him to sit at the table with us for more than five minutes at a time. Also, smells! He is very sensitive when it comes to smells, so that is also hard to get away from at a restaurant.

Have you encountered nasty comments from other diners?

We have never heard a rude comment at a restaurant (probably because I can count on one hand how many times we have taken Liam.) We have encountered rude comments and stares during grocery shopping though. I only say, “He is autistic” and that changes everything. They either look away, or tell me how cute he is, and that is that!

What attractions/activities do you always incorporate in an outing?

When we do go on an outing, I like to make sure it’s fun and even educational if I can. Liam is currently homeschooled, so I try to make everything a lesson. He enjoys going to state parks because there are always plaques with info about the area for me to read to him.

Any activities that are currently on your bucket list?

I want to take him to a zoo. The closest one to us is not wheelchair friendly, so, my hubby wouldn’t be able to go. Liam loves animals of any kind, and I think the zoo would be awesome for him. I do worry about the smells, though. I think taking him in the spring, before it got too hot and smelly, may be the best because he has a very sensitive nose and a very quick gag reflex.

He may be taking part in a study at CAR in Philly, and if he does, we think the Philly Zoo will be a stop for us!

Does Liam collect souvenirs from outings?

Liam is a collector! He loves to collect rocks from every place we go, even if it is to the creek right next to our house! We have many rocks at home! Hubby and I either get him a snow globe or a magnet from every place we take him. That way he always has that little memory.

Has he experienced meltdowns during an outing, and if so, what do you do?

Meltdowns are the worst, especially in public. I have become pretty good at being able to tell when he is getting ready to explode. If I catch it in time, hubby or I remove him from the situation for a little sensory break.

If he melts down before we can get him away, the first thing I do is try to embrace him, and get him to look me in the eye, and try to talk him out of it. That rarely works, so the next step is getting him out of the situation before he becomes enraged.

Liam is not bad in public. Most likely if we have a problem, it is crying or shouting. He tends to get so absorbed in what it is we are doing, that nothing is going on around him matters.

How do you keep the memories alive for him?

I love to scrapbook. The only problem is it is hard to do with Liam. He loves to help me, and he loves to make crafts, so keeping him out of my supplies is not easy. Most would say, “Do it when he’s sleeping.” That’s fine for mothers of neuro-typical kids, but any special needs mom will tell you, “You sleep when they sleep!” It’s a lesson I learned very early on!

Recently I have started him a new scrapbook of sorts. A friend of mine makes beautiful photo albums. I was lucky enough to win one from the raffle at the Autism Hearts benefits walk. So I have started using that. I make it as a scrapbook with pictures and whatever keepsakes we may have from that outing. Also, I make notes in there so when I am old and forgetful Liam has the memory written down for him. I add little things to make it nice, but it’s nothing like the ones I made when he was a baby. For me now, simpler is easier!

We always take a ton of pictures! We can’t afford to print them all, so instead we catalog them by month and burn them onto a disk so he will always have them. Often I will use my photo program and put the pictures in a beautiful layout, so they are scrapbooked, but in a less time-consuming way. Got to love the digital age!

You mentioned you are a paranormal investigator; has Liam gone on any trips and how do you explain it to him?

In my spare time, (which is few and far between these days due to hubby’s disability and caring for Liam) I am a case manager and paranormal investigator for a local team called Endless Mountains Paranormal. I love it. It has always been a macabre passion of mine.

We are a very family oriented team, and try to do outings with all of our kiddos. Last summer we were asked to host a paranormal night at the Binghamton Mets, NYSEG Stadium. That was so much fun! Liam got to see his first baseball game with Daddy! We also did a kids night on our own. We got together at our local park in the evening. The kids had snacks and played a few ghost-themed games. Then when it became dark, we set them loose with some of our equipment, and they did their brief investigation. They loved it.

Liam is very into the paranormal. His favorite paranormal show is Destination Truth. He loves that it covers ghosts and monsters. Occasionally he will wear a scarf and pretend he is Josh Gates and haunts our house.

*All pictures for this post have been submitted by Courtney Barnum.