In July 2009, Jordan and I were holding a positive pregnancy test. This pregnancy was just as simple as my first—an overall healthy pregnancy. We found out the baby was a boy and I was induced at 39 weeks.

Koby was born on March 1^st weighing in at 8 pounds 12.6 ounces

He was a colicky baby. He cried morning, afternoon, and what seemed like every moment in between. He was nothing like our firstborn, Kylan. Something we noticed almost immediately was that he avoided making eye contact. Deep down I knew that was unusual, but I kept trying to convince myself otherwise. I knew that other babies his age would make eye contact and smile at the sight of their mommy’s face. But not Koby— something was different.

As he got a little older, approximately six months old, he would cry every time he would have a bowel movement and would be covered in sweat from screaming. Once he was almost two, it had become such an issue that we finally got a referral to a gastroenterologist. After telling his story and the doctor feeling on his stomach, we left the office with a prescription for Miralax. She seemed to think that he was having anxiety about using the bathroom, but that the fiber would work as a stool softener so it wouldn’t be so traumatizing to him.

As he got older, we started noticing that he would rarely ask for help. He had a fascination with wheels and watching them spin on all of his toy cars. He would line up all of his toys, constantly move his hands in front of his face, and had repetitive behaviors. For instance, he would act out Thomas the Train scenarios and run from one end of the house to the other while making different noises and facial expressions for hours. He would get fixated on certain things and it would be all he could think, and talk, about. A lot of his communication was quoting Thomas the Train. He had no interest in other children and would become distressed by any minor changes in his routine. All of these are signs of autism.

We continued to have issues with him going to the bathroom. I would sit and cry in the living room while Jordan sat with him for sometimes hours at a time in the bathroom until he just couldn’t hold it in anymore. He would scream and cry, begging us not to make him go to the bathroom, but after it was over he would tell us that it didn’t hurt at all, yet he couldn’t explain why it was such an issue. We experienced a tremendous amount of behavior issues as well, and the longer he would go without having a bowel movement, the more problematic he would become.

I remember one night in particular when we were at our new house and Jordan had told Koby he had five minutes until bed time. I have always stressed the importance of giving him five, three, and one minute warnings so he would have time to process whatever transition was coming up, but even with a visual timer, it was always a struggle. He would have severe meltdowns if things weren’t going his way. It’s like he couldn’t stand the fact that there were rules he had to follow at home and at school. This night after Jordan told him it was time for bed, he completely lost it. He started screaming at Jordan, lashing out at him, then he walked into the kitchen, picked up a kitchen chair, and threw it. These things happened a lot, more so towards Jordan than me or anyone else. He has never gotten physical with me, but he has punched, bit, kicked, and slapped Jordan more times than I could count. When we would try time out in his room for three minutes, he would destroy his room in anger. It got to the point where Jordan had to take his bedroom door off the hinges because he would slam the door as hard as he could, lock it and trash his entire room. We were concerned about his safety. I was fearful about his future and how raising such a strong-willed child would affect our marriage and our other children.

When Koby started Head Start in 2013 that is when we began getting some answers. His behavior was out of control. He would hit, kick, pinch, and even bite his teachers or other students. He has thrown chairs, pulled the fire alarm which evacuated the whole building, and was asked multiple times to stay home from school. He had a hard time with sharing, transitions, and sitting still for circle time. I would literally have to drag him to the living room to get clothes on for school- he hated going to school. One morning I had gotten him ready and he refused to go with me to catch the bus. He screamed, he cried, he ran. He had missed the bus and I made the decision that I wasn’t going to transport him because I knew that would ruin his whole day. With an autistic child, making changes to their regular routine usually results in extreme anxiety and meltdowns. I didn’t want a bad morning at home to result in a bad day at school, but it would have. When Koby has a hard morning, it sets the tone for the rest of the day. Once he gets angry, he becomes defiant. I had to leave to get to work and left Koby with my mom screaming and crying for almost three hours. I remember her sending me a video of him two hours later. As much as I’d like to say that was the last severe meltdown he had, I can’t. We experienced them often. His behavior at school never improved. His teacher called me weekly, sometimes daily, to discuss accommodations, modifications, behavior charts and everything in between, but nothing seemed to help.

He was finally observed by someone from Cherokee Health Systems and she referred us to a specialist who specializes in pediatric psychiatry. She met with us, had us and his teachers complete a questionnaire, and at our follow-up appointment she “scored” our answers and scheduled another appointment for a more formal test to determine whether or not Koby was on the spectrum so we could seek early intervention if he needed any special services. A brief test using a screening tool does not provide an ASD diagnosis, but it indicates if a child is on the right development track or if the specialist should take another look. If it identifies an area of concern, which Koby’s did, a formal developmental evaluation may be needed. This formal evaluation is a more in-depth look at the child’s development. The specialist may observe the child, give the child a structured test, ask the parents questions, or ask them to fill out questionnaires. The results of this formal evaluation determines whether a child needs special treatments, early intervention, or both.

In the meantime, the specialist referred us to an occupational therapist. We went every Monday morning and she worked with him for an hour each week. His occupational therapist stated that even though Koby has shown signs of being autistic, that in her professional opinion, she only considers him to have SPD, also known as sensory processing disorder. Some individuals on the spectrum do have sensory issues, some more significant than others, but some research claims that ASD and SPD are two distinct disorders. As a parent, having professionals diagnose your child with different things can be confusing. You want answers. You want the proper diagnosis. You want to know what you can do to help your child thrive.

At Koby’s next appointment they completed the formal evaluation. Once she reviewed his scores, she determined Koby to have high functioning autism. She then referred us to a speech specialist because in her opinion, Koby’s speech was delayed. We went to the Speech and Hearing Center and after a 2 and a half hour appointment, it was determined that there were no concerns with his speech. They also informed me that he had a strong vocabulary for a child his age and seemed confused as to why he was sent for an evaluation. He also passed a hearing test which was also a relief because as a newborn he failed his hearing screens and we had to have him retested more than once.

After Koby’s diagnosis, the specialist made phone calls to our county schools to see if Koby could qualify for a special education program before he started kindergarten, since Head Start wasn’t properly addressing his needs. In December of 2014 I received a phone call from Kylan’s school, only it was the special education Pre-K teacher hoping to do an assessment on Koby and enroll him into their program. In January we went to his evaluation and after interviewing me, questioning Koby, viewing past questionnaires and letters from his previous teachers, occupational therapist, doctors, and looking over his speech evaluation results, she told me that we would hear results within a few weeks as to whether or not he would be accepted into the program. We were a little worried because he scored really high on all of his assessments which didn’t make him a “high priority” for the program, but the behavior issues helped his scores.

Getting accepted into the special education program was such a positive experience for Koby. Things started out rough. He had a lot of difficult days that resulted in him being put in a restraint chair to refrain from hurting the other children and/or teachers, but he soon progressed. They began inclusion, which meant they allowed Koby to spend a small amount of time each day in the regular Pre K classroom. He continued to do well (so well that the teacher made an effort to call me on the phone on several occasions and brag about how well he had been participating) that they increased his time little by little. By the end of the school year he was spending the entire day in the classroom.

There was an IEP meeting held towards the end of the school year so we could discuss whether or not Koby should be placed in a kindergarten classroom this school year.

Koby started kindergarten on August 3^rd

Here we are, almost two months into school, and he’s doing well. There have been a few days that he has “clipped down” for having bad behavior, but we are so proud of how far he has come. I attended an IEP meeting a few weeks ago and I have never been so happy walking out of those school doors. For those of you who aren’t familiar with an IEP meeting—it can be overwhelming. The principal, the child’s teacher, usually a special education teacher and an occupational therapist are there. As the parent, you feel like you are in the hot seat. Your fingers are crossed the whole time as you pray for good news. We went over Koby’s goals, the goals he has met, his progress in reading and math, how we can all work together to continue to see improvements, and so on. The principal mentioned what a huge transformation has been made since he first started the special education program. He was very detailed about certain situations, he mentioned how he has made an effort to work with Koby and how well Koby has been adjusting to a new classroom environment. Aside from clipping down to yellow, orange, and red for his behavior in the classroom, he is considered to be on the kindergarten level—exactly where he needs to be.

To make things even better, he has had great behavior every day for the past two weeks. He even clipped up to the color blue, which means he had an extra-fantastic day! He has learned each of his sight words and can write them, he knows all of his letters, his shapes and 3D shapes, and is counting by 10’s from 10-100. We are so proud of him! He has progressed more in the last two weeks than I would have ever imagined. Of course we will be faced with obstacles along the way, but I have faith that our God will see us through.