The first week of his life he was healthy. He didn’t have to go to the NICU or even have jaundice. However, one thing after another happened after that. We first encountered projectile vomiting almost every time he ate. We tried multiple medicines for acid reflux and nothing worked. He was tested by ultrasound for pyloric stenosis, a stomach condition that requires surgery or death. My tiny baby was not allowed to eat, which was heartbreaking. He was laid on a regular sized bed which made him seem smaller. Then the tech used the smallest tool for the ultrasound which engulfed his abdominal area. They decided after testing that had a dairy intolerance. I cut dairy out of my diet and he got better. By the time he was four months he started to have difficulties breastfeeding and had even more problems with a bottle. This was a very painful time emotionally and physically for me. I endured toe curling pain for my child. We soon learned the issue was caused by a tongue tie and lip tie. It took until he was six months to get them clipped. There were no immediate changes and since he had no weight gain while waiting to get them clipped and weight loss after we were referred for feeding therapy. I continued my classes again when he was six months old, so doing feeding therapy and my classes was a lot for those three months. I learned to manage my time well. When he turned eleven months he was old enough to have his hypospadias surgery that fixed the deformation of his penis. During the surgery I paced anxiously. Two hours later the urologist came and got us. He said everything went well. I had roommates who criticized me for putting him through surgery and for getting his partial foreskin hood removed, but I pushed through as I knew what was best for him. We celebrated his first year and we hoped for better years to come.
Even through all of the pain and suffering that we endured as a family, my husband and I would never trade it for not having had him. Soon after his first birthday, we were still having acid reflux issues and added to that an aspiration issue when drinking liquids. This was discovered, though an x-ray which they strapped him down and he screamed and I could not help him because he needed the test. We had to get drink thickeners, it was really expensive, but for the safety of my child the sacrifice was made. He had leg x-rays, which again he screamed with, when he finally started walking at 16 months because he was walking with a strange gate. Thankfully nothing was wrong. I joked with my son that he was not allowed to have anything else to go wrong because mommy wanted a break from medical exams. My heart broke when he had to go through all of it and I knew he hated it, too. I started to notice social and emotional differences in him before he turned a year old and I just assumed it was because he was born early. When he was eighteen months we made an appointment at Hope Network Center for Autism. This started us on a whole new journey that began two months later.
The biggest life changing thing that happened to me besides having a child, was hearing that he has autism and that it would be a lifelong disability with a varying possibilities of functioning. It was not a life changer in that my son changed. He was the same child that I wanted so badly after I had a miscarriage and he was the child I loved and wanted so much after he was born and the child I still wanted when we went through all the difficulties his first two years of life. It was an internal emotional change that happened. I went through a time when I grieved for the loss of what my child may have become. When you have a child, you have all these hopes and dreams of who they may become and what they may do and then you hear that it might not happen; that they might not get to do all that you dreamed or hoped for, it crushes you. Not because they made the choice, but because they have a lifelong disability that prevents them from making that decision. After I went through the process I came to the wonderful side of acceptance. I loved and accepted him for who he was now, not who he might become someday, or the growth he might or might not make. I accepted him for exactly as God made him. I accepted him for all of his difficulties, not knowing what his strengths might be someday. I loved him and still wanted him. He was completely mine and I would not want to trade him or get rid of him, he was still what I wanted.
Having a child with autism was one of the most meaningful and special things that has happened in my life. My life may not be the easiest, but we all have struggles; No matter if you have a child who has a disability or a child that doesn’t, whether you go to school, go to work, work as a stay at home parent they all have their challenges, different challenges, but they still have their challenges. In some people’s eyes, I was seen as a super mom for all I had done, but with my own eyes I had not always seen it. I did what was needed to help my son function daily and strived to get school work and house work done. Having a child with autism uncovered a whole new part of me. It first started with my ability to stand up for my son and what he needed. The road to getting his diagnoses of autism was not quick and easy we were told by early on they would not diagnose him because he was not old enough. His pediatrician was thankfully not of that same mindset. I learned to stick up for the fact that what was happening was not just a tantrum or that he was in any way spoiled, but that he was having a sensory overload meltdown. This in return taught me to stick up for myself, my parenting and other choices in my life. Through learning how to stand up for myself and my son and what was best for him and our family I had many friends recommend that I should share our story of that and swimming to help inspire others in many ways. Inspire them to fight for the diagnoses, to fight for their child’s needs (a child with autism has sensory needs along with the normal needs) to educate themselves on their child’s needs because with understanding comes patients, which was another thing that I learned from my son, to find what helps meet their child’s sensory needs and what helps to stimulate them in a good way and what over stimulates them, and to just otherwise show that they are not alone and you can fully love and accept your child with autism.
I took the advice of my friends and created a blog titled Just Josiah J. -Autism Adventures (this blog). It started simply enough by being shared with friends and family. I started talking about our adventures in swimming and then branched out to talking more about autism as well as myself. The blog has now had close to 9,500 views. Shortly after I started the blog, I found it would be easier to share it with strangers who wanted to know more about swimming and autism if I created a Facebook page this would also let everyone know there were new blog posts. I was able to use the page to share little updates and pictures from when we went swimming and other adventures we went on. The page started out small with just mainly friends and family and it has grown to nearly 2,000 people. I had gotten comments about how the page or blog has helped others learn what autism was and gave them understanding and acceptance of those with autism and from other parents who I had helped in many ways. About a year later I created a local support group because the Grand Rapids area did not have a parent group online. This had helped nearly two hundred fifty moms and dads, we had just recently expanded the group to not just moms, but dads too. I was glad that I stepped out of my comfort zone and created the local support group because I got comments all the time about how helpful it had been to just be able to talk to other parents and get ideas on how to deal with different behaviors.
The best gift of all of from this whole journey, besides having a wonderful son and getting to help many people, was that I discovered even more about myself. I discovered through my walk through the world of autism that I was on the autism spectrum, too. It answered so many questions to why I thought differently and why my senses were a lot different from other people. When I found out it was an ah ha moment and was such a relief to know what makes me the way I was. I was glad to have gotten a better understanding of myself and my son. Not a perfect understanding because each person with autism is as different from each other, as each person who does not have autism is from each other.
