It is not uncommon for those who do not understand autism to perceive an autistic child as being “out of touch” when, in reality, the autistic child is very heightened to touch and other sensory matters.
Kristin Edge Hunt felt that life was pretty normal before giving birth to her son Caldwell, though she had been dealing with thyroid tumors since high school and undergoing multiple surgeries from her own health issues.
“We had just bought our second house and lived in Columbus, Ga. I was in sales. My degree was in sociology and social work, but my heart wasn’t in it anymore after I interned for so long working for free. I switched to advertising sales, but my husband had really pushed for staying at home to start a family. It was the easiest pregnancy ever - even with my health problems,” Kristin insists.
Caldwell was born in August of 2004. Kristen also dealt with adult-onset epilepsy which concerned her during her pregnancy. “I couldn’t breast feed because of the epilepsy medication. We had thought he was allergic to milk and that he may have still had epilepsy medication in him. We had cleared this with my neurologist. In the initial phases, I knew I didn’t fail my child, but at first I blamed myself wondering what I could have done differently. Nothing. I had talked to a pediatric neurologist and others who told me it was a very safe pregnancy. Caldwell does have focal seizures with the autism, but it is nothing like what I have,” Kristin says.
For the first three weeks of Caldwell’s life there didn’t seem to be anything wrong, but he had experienced a lot of vomiting, possibly from an allergic reaction or from sensory issues - though he was not properly diagnosed until later.
“My mom had noticed he began to vomit and that he kept choking .We thought he had a mild cleft palate because the milk was going through his nose and everywhere.” Kristin voices.
When she called the pediatrician at first he had told them it was probably acid reflux. Kristin had a milk allergy when she was a child so this did not alarm her until she realized that Caldwell just couldn’t swallow.
“We switched his formula to Tramogen. Every bottle was extraordinarily difficult; he would choke and vomit and it was painful for him. It broke my heart. He would soon be put on a G-Tube and I knew we wouldn’t get him off of that for a long time if that happened,” Kristen says.
Health professionals on Caldwell’s team wanted to keep him off the tube if possible. With a special needs child, they have to have a desire “to do”. He had physical issues with swallowing, but it was gigantic sensory issues that kept him from being able to coordinate the swallowing. I don’t know that I even slept for years. We did swallowing tests and tried to find out what was physically wrong with him. One night he was sleeping and I was just watching him. He had to sleep kind of sitting up and he looked as though he was swallowing in his sleep. It was about one in the morning and, as I watched his little lips moving, he looked like he was coordinating swallowing. I fixed one ounce of formula and wondered if we could do it while he was asleep when he wasn’t aware of his senses – and he did it. He sucked down one ounce like it was nothing!” Kristin remembers.
Kristin worked with her son every night while he slept, in order to get his weight up and she had videotaped her findings for Caldwell’s pediatrician and OT. His weight was up by one ounce of what was required to avoid the G-Tube.
Caldwell’s swallowing issues began improving when he was about three and a half years old, but he was dependent on baby bottles until age four. Textures are still a problem and Caldwell’s sensory issues will never go away. They will get better and then regress, depending on life events.
“I am of a positive nature so I thought, ‘No, we will work this out and he will get through this feeding stuff and he’ll be fine’,” Kristin hoped. “We worked day and night in that high chair. An OT came in the house and we went to an OT twice a week in Atlanta. I just dove into it and I was going to get this child the help he needed.”
When Kristin had found more tumors in her body (which resulted in her having a double mastectomy) her mother came to stay with her to help with Caldwell. Kristin had put reconstructive surgery on hold until recently as she stayed focused on helping her son.
“His struggles began very early. His senses were so much more enlightened than ours. I’d hurt for him because I knew his life would be such a challenge. I just wanted his life to be less difficult, but he has kept me strong and …” Kristin admits, “there was just no time to cry.”
While tackling the eating issues, Caldwell was diagnosed with Autism when he was three years old.
“Flushing a toilet was traumatic for him - it was loud. His brain is like a churning rolodex and occasionally he will just stop and focus. I can be talking to a friend and he doesn’t even hear what I am saying unless I use a ‘sticky note’ word. He does hear everything and it might go in, but it doesn’t go in to get his attention. To get him to see me, I have to say something that is going to pull him in because he is in autism-world …he is in Caldwell-ville,” Kristin relates.
“He is not ignoring me; he just simply is not with me. But when I do have him with me, it is amazing. The time that he is not with me, I have learned to accept it and that is okay too,” she says.
Textures are still a problem for Caldwell. The way something looks, how it feels and or smells are major issues. His typical meal consists of very basic foods such as gluten-free chicken fingers and broccoli.
“I try to keep things crunchy; nothing mushed, mashed, or spicy – just simple foods. We will introduce new foods slowly. Casseroles are his biggest nightmare. Keeping foods separated helps a lot,” Kristin says.
When an autistic child has a trigger such as a beeping noise from a cash register, it can cause them to ‘stem’.
“To you and me, it's just a beep and it may not even register to us, but it can turn his whole world upside down,” Kristin explains.
“At first, I thought it was just an unusual habit. It was perplexing and I felt I should comfort him. Once Caldwell began stemming on a routine basis, it occurred every hour in multiple intervals. There's no defined time. It could be five minutes, or five hours,” his mother shares.
Caldwell’s stemming depends on how stressful a situations is and how regulated his brain is and how he interprets his senses.
“Schedules are crucial to keep him on task. If he gets fixated or hyper-focused on a sticky-thought, he cannot be reached, but he eventually comes back. Sometimes when he's ‘gone’ he will stem to try and regulate his brain and he uses echolalia (the compulsive repetition of words) as a coping mechanism,” his mother explains.
Being a Lookout Mountain girl, her divorce would eventually bring Kristin back home to Chattanooga.
“We moved out in the country so he could have a place to play. We can ride four-wheelers on this giant piece of property on that hill. We like to hike the ridge. This is out of my element, but for now the price was right for a newly single mom,” Kristin acknowledges.
Caldwell’s bus pulls up to his house and he heads right away to the K’Nex toy building set that was in the floor - just as he left it.
Kristin shared that he would know if something had been moved. When Caldwell pulls a piece out of the box he notices right away that something foreign was placed inside the box. “He-e-e-y how did that get in there?” he muses.
His mother tells him that she put it there and shouldn’t have. Caldwell continues to play, emptying the box and building a project.
He notices the radio playing and says, “Mommy, you have the music on and you are not listening to it.” He runs over to help out his mom, shutting off the radio and comes back to play while Kristin continues the interview about her son.
Caldwell screams excitedly about what he made, while never making eye contact with his mother, but he listens for her reaction.
“That is a really cool tower," she tells her son. Caldwell says matter-of-factly, “It’s called a car.” Keeping her son engaged, Kristin says, “But it is a walking car.” Caldwell thinks for a minute and he buys that.
He plays excitedly seeing what he can do with what he had just built as Kristin shares more of Caldwell’s story.
“We were advised to do a special-education preschool in Auburn, but that didn’t go too well. Auburn was not great for special-needs kids. If you were a cookie cutter kid, fine, but if you were a flower that grows in a field, they’d just clock you in with 24 other kids,” Kristin reveals.
“When we got in Chattanooga, they looked at his IEP (Individualized Education Program) and asked, ‘Why hasn’t he been in Speech and OT?’ He is now at Hixson Elementary; they are doing a lot of special things to get him caught up where Auburn had him so far behind academically. Hamilton County is wonderful for children with special needs,” Kristin maintains.
“Coming home was the best thing for us. When I came back, I knew part of my heart was always here. Caldwell received a lot of support and love from friends and family. He did remarkably well adjusting, given his disability,” she says.
As if Caldwell knew that he was the center of attention, he stands up from his toys to perform yelling out a word that little boys his age are amused by. He then demonstrates by playing a ‘hand-under-the-armpit’ concert.
Kristin smiled at her son and continued, “He's in a transition class with about six kids. It's very structured and award-based. He goes every day and receives Occupational and Speech Therapy. The next steps are to continue school and progress socially and behaviorally. He's in first grade, with similar special-needs kids.”
Feeling Puzzled is a non-profit organization for parents with Autistic children who need resources to help guide them with raising their special-needs child. Kristin has become involved with that program.
“I hope Caldwell can someday tell me what it was like to grow up with Autism. I hope he can find something he is passionate about and turn it into a career. I hope he will meet someone that will have the patience to understand and love him, and stay by his side no matter what and experience the joy of family. Caldwell is very bright and I think the sky is the limit for him,” Kristin beams.
With patience Caldwell will learn to cope with his life challenges and be successful with Autism. He will overcome the sensory issues with the help of his mother, occupational and speech therapists, psychologists and psychiatrists and other special education teachers.
Kristin closes, “Caldwell keeps me strong, smiling and on my toes. I feel blessed that I am still here taking care of the greatest gift that God could have ever given me.”