I was recently at a women’s house in my ward for a swim day activity and we happened to start a conversation about how difficult some kids are and how they come to this earth that difficult. I started to talk to her about Parker and how impossible he was when he was young. During our conversation she looked at me and said, “How did you survive?” Then I remembered that I almost didn’t. I really appreciated her empathy. In this day and age if you start talking about how difficult your child is people don’t usually want to be a part of the conversation. We still have our moments with Parker now, but with some hard work he is finally maturing and growing out of some extremely difficult behavior.
I always wanted to be a mom. I started babysitting at a young age and had quite the little business going for me, especially the year I was home schooled. I was also a baby snatcher in the church I grew up in. I would hunt for the babies and ask if I could hold them. I didn’t even really ever want to go to college. I struggled with school because I’m dyslexic and I just knew I could be successful as a stay at home mom. I wanted to meet my dream guy, get married and start having babies. To this day I just adore the 0-6 month age group and then they grow up. They are hardly ever babies! It’s like your enjoying your baby then you blink and something happens to them. It’s a crisis I have experienced three times now.
My grandpa came to live with us around the time that I started high school because he had Alzheimer’s disease and it essentially ended my baby sitting career. My parents would desperately need to get some time away by the end of the week, so I would stay with my grandpa and watch him one weekend night a week. I left for collage not long after he passed away and when I needed a college job I realized I had the perfect skills for working in a nursing home. I became a CNA and that’s how I supported myself through college and even during a “break from college to figure out what I was going to do with my life”. Eventually I started to work at a rehabilitative unit at the University of Utah Hospital and met some occupational therapists and certified occupational therapy assistants also known as OT’s and COTA’s. Since I was entering my mid-twenties and my plans to just get married and have babies wasn’t really working out for me, going to OTA school seemed like a really good back up plan. I liked that I could still be a practitioner but that I could get an associates degree instead of a master’s degree (since I wasn’t awesome at school). I also liked that I could work in pediatrics if I wanted to, after all I did love babies.
I started down this road and was accepted into the program and then I met my dream guy. Brent was taking his finals during his second year of law school when we meet and by then I was absolutely determined to finish OTA school and work as a practitioner. Since Brent was still in school I moved forward with plans for school myself. At the time I don’t think I could have realized what an intervention from God that OTA school was and that it was God that was giving me the drive to accomplish it.
A few years before I had gotten married I became aware that it may be difficult for me to get pregnant and have children. I was diagnosed with Polycystic Ovarian Syndrome also known as PCOS and didn’t really understand how difficult it would be to get pregnant until I was in the midst of turmoil and distress. While I waited to get pregnant and often wept, I finished school in Las Vegas where Brent had gotten his first job out of law school. I accepted a job at an outpatient pediatric therapy center. They had a mentoring program at that time for new graduates that lasted two months and it was perfect because there is no way to throw someone into that kind of work without training them first. I watched the OT work with some clients that had really difficult behavior and severe tantrums. I used to wonder how on earth their mothers survived. I never have been a really judgmental person. Even before I had children I wasn’t dumb enough to say things like, “I’ll never do that when I’m a mother” or something even more ignorant like, “My children will never behave that way”. Having this first job out of school in pediatrics humbled me even further. The first time I was given a tantruming child and had to figure out what to do to get through a therapy session I was so lost and seriously considered quitting and going into geriatrics where I was comfortable. I am so glad I didn’t because working in pediatrics became my training to eventually become Parker’s mom.
I talked my husband into moving to Colorado (that was a whole other blog post). Denver has a lot of pediatric outpatient clinics that focus only on Sensory Processing Disorder and I was very interested in working at one of them to gain more knowledge about the disorder. I worked at a sensory clinic for a year and received even more valuable experience before going to work for a contractor that contracted therapy services to the local school near my home in the mountains. A couple months after I started working there some fertility treatments finally worked and I found out on Brent and I’s four year anniversary that I was finally pregnant. My prayers and the desire of my heart was finally fulfilled. At this time I thought that I had such good training and experience in pediatrics that I had a pretty good chance at being a pretty good mom. I already knew how to discipline and I understood how to deal with some difficult situations and I was pretty confident. Then God said, “We’ll see about that” and shook my confidence to the core.
This first night after Parker was born I started noticing that he might struggle with some sensory issue. He would only calm if he was tightly wrapped and his head was moving. Then he had his first tantrum, yes a new born can have a tantrum, it was the shot heard round the world. Parker preferred only nursing on one side. I’ll spare you the details since we are talking about breast feeding. I just remember the feeding specialist shoving his wide screaming mouth over the non-preferred side and saying he would eventually give up and feed. Yeah he gave up, a week later. And so it began. I was elated and a bit blinded by his moodiness because I was so incredibly grateful that I was finally a mother and man the kid was sooo cute! (He still is.) At first it started out that Parker would be in a decent mood for about a month then an awful mood for a month. I think it was related to his teething. Then he wasn’t reaching his benchmarks. He was older than I expected when he finally rolled over and started sitting. He would just sit and cry in anger because he wanted to move but didn’t know how. If I tried to help him he would get angry with me so I took him to the physical therapist I shared an office with. He was 10 months old and talking but not crawling. She told me to bring him in the next day for a community early childhood screening. Of course he qualified and so began our journey.
I remember being grateful for the help but also feeling like I could cry at any moment that my child was struggling. Every once in a while I would have to push away feelings of panic. Parker started to crawl for the first time with the physical therapist’s help when he was 12 months old. When he was 15 months old he went into one of his grumpier moods and stayed that way. In fact it got worse. It was during this time that I found out I was expecting our second child. I had gotten pregnant on birth control and it was such a shock and such bad timing with Parker’s constant anger that I cried with the news and Brent went on a walk for an hour. I wanted motherhood so desperately but when it came it took my breath away and it was so much more difficult than I could have ever expected. Parker took his first few steps at 18 months old, also with the help of a physical therapist. I started to realize that it was transitioning that was so difficult for him and why he was delayed. Parker could not handle transitions. (That’s probably why it took so long for me to get pregnant, it took him that long to transition to becoming a part of our family.) With each transition of the day a war would begin. If he touched something he wasn’t supposed to and I told him no he would go into a psychotic, violent fit that would last for at least an hour, sometimes an hour and a half. I would have to put him in his crib and he would rage, scream at the top of his lungs and throw himself into the railings. I was petrified of him but I was also stubborn myself and I knew the consequences of not being consistent would be severe. Every time Parker did something he needed to be corrected on (like climbing onto the table and trying to swing from the chandelier) my heart would race and I would know what I was in for. Most days he would start a fit, scream for an hour to an hour and a half, finally calm down and then ten minutes later start all over again. One day he screamed for almost eight of his awake hours. I remember putting him down on his bedroom floor, moving away then I started to hit my fist against the floor yelling, “You have to stop screaming!! You just have to stop screaming or we’ll never survive!!” I know it sounds dramatic but I felt desperate. That night I prayed and told Heavenly Father he had made a huge mistake. I wasn’t a good enough person to be Parker’s mom and he should have sent him to someone else. Brent was approaching his second job change since moving to Colorado and I was approaching the delivery of our second child. I was still working two days a week, thank goodness, or I would have lost all sanity.
I was completely isolated in our mountain home. No one ever came by and because we lived an hour from Denver the only time I would leave the house was go to work or to go on hikes unless it was in the winter and it was too cold outside. One time I tried to reach out to my mom and tell her how bad it was and it didn’t go over very well. She thought I had a normal kid and I was just being a complainer. A couple of years later we moved in with my parents while Brent was out of work and at that time she acknowledged that I had it very hard. She explained that she never had the difficulties with my siblings and I that I was having with my children. It made me feel so much better to hear that because I felt validated.
The depression of my situation hit hard after I had Abby. She was the sweetest baby and so happy but she did not sleep well. I was dealing with her crying all night and Parker screaming all day. Sometimes I would walk out to my porch look at the beautiful scenery then cry. I do believe that Abby was sent to me to bring joy to my heart and keep me from losing all hope. If I would have had her first and only had to deal with some rough nights I would have thought that being a mother was easy. Not long after having Abby we had driven down to a mall in Denver and Brent had taken Parker on a merry-go-round. When it was over Parker couldn’t understand why he had to get off and had such a violent tantrum that Brent had to hold Abby while I restrained Parker on the floor of the mall. Parker was so crazed and out of control I wasn’t sure how we were going to get out of there. I fully expected someone to call CPS on us even though I was doing what I had been trained to do under those circumstances. Afterword Brent was so disturbed by the ordeal that he kept talking about the man in the bible whose son was possessed by demons and how upsetting the situation had been for him. A week later I came home from the store and carried in some groceries. I had to put Abby to bed but Parker wanted to stay outside. We lived in a condo and I had to bring him in. He became so angry he screamed out all the air from his lungs then stopped breathing and fell on the ground in convulsions and turned gray from the lack of oxygen. I called 911 and they were on their way when he started breathing again. At least he got to see a fire truck and have the undivided attention of six firemen. After that I knew we needed more help than we were getting. I may have a background in pediatric occupational therapy but this was bigger than me and my perspective was off. I was way too close to the situation to know what to do and I called his IFSP case manager. She had a behavior specialist scheduled to come do an evaluation within the week.
The behavior specialist was concerned about high functioning autism and confirmed that she felt he had sensory issues as well. She wanted me to schedule an evaluation with the Children’s Hospital in Denver where there was a two month waiting list. We started working with the behavior specialist to get Parker to go out into public and to practice transitioning. We started with a park and some strategies to use in order to leave the park then we went to the children’s museum with a picture schedule and survived. A week later I went by myself to the same children’s museum. I was able to get him to go from exhibit to exhibit but I wasn’t able to get him to leave. Parker went into a violent tantrum. I was able to get him to a corner where he wouldn’t hurt anyone while I put Abby in the stroller. My heart was pounding and my emotions were rising when a women who was there with her grandchild walked up behind me, not to help but to glare. She walked up to where we were at, folded her arms and gave me the most evil, awful stink eye. I wouldn’t look at her because I didn’t want her to engage me. She just stood there watching me struggle and wanting so badly to tell me what a bad job I had done and what a horrible mom I was to raise such an awful child. To this day I wish I would have asked her if she was an expert in autism and if she had come over to offer her advice. I carried Parker over my shoulder while he kicked me and hit me and I pushed Abby in a double stroller with the other hand. I was completely alone in the world. Totally, completely alone. The place was full of people who just watched me struggle to get out. Once I got through the door a women with her seven year old saw me and called out, “Here, let me help you!” Then I lost it. The women kept telling me, “It’s ok, hold it together for your kids then you can cry.” She helped me load up the kids and the stroller. That is how it should be folks. No mother alone, no parent alone. No judgmental glares, no nasty looks. You don’t know what is going on. Maybe someone’s world is falling in on top of them. Maybe that child that looks normal isn’t your typical child. What is normal anyway? None of us have a normal life. We need to be there for each other, reach out to each other.
Parker was not diagnosed with autism but we were told they felt he had Sensory Processing Disorder. Years have gone by. We have had psychologist, behavior specialist, occupational therapist, IFSP’s and IEP’s. We went from using cribs to locked bedroom doors and car seats when violent tantrums would happen in public. We have had to be consistent and unchanging. If we give an inch Parker will take miles and miles. Sometimes people think I’m a mean mom because of how stern I have to be with him. I didn’t think the storm would ever let up but Parker has gotten so much better. He was pretty difficult with moments of drawn out anger until he was about five years old. It helps that our lives have become a lot more stable and consistent. We still have at least one big move ahead of us and I’m sure that transition will stir things up a bit but until then Parker has been a little ray of sunshine for the last year and a half with much smaller moments of anger.
I think about how much being a Pediatric COTA helped me navigate my first few years of being a mom. The opportunity came for me to go to school and God was like, “You’re going to need this” then he gave me Parker. I needed my education to help know what to do for Parker but it was also a great blessing during our times of financial distress which were inter weaved in our moments of a complete loss of how to parent our first child. I’m a better practitioner because of being Parker’s mother. I call the parents of my students and I can problem solve with them and show them empathy in a world that is foreign and hard to navigate. As I grew up I never imagined that I would be someone that not only went to college but wasn’t a full time stay at home mom. I now have three children and I still only work two days a week with summers and holidays off so I am at home a lot. I found a job since moving back to Las Vegas that is perfect for me and for my family and I’m grateful that I’m still able to work and learn and I’m grateful that God had a plan for me that was different than the plan I had for myself.
