Two children. Two diagnoses. I would love to say that the second diagnosis is easier to receive than the first diagnosis, but it was just as difficult, if not more surprising because I was not expecting it.

The Situations

I received my children’s diagnoses about 5 years apart from each other. With my son, I was about 4 weeks postpartum, dealing with hormones and also HB was born with a birth defect that we had to deal with immediately and it was a process. Thank God it was not anything too major. But Life was stressful.

I would love to say that the process of receiving HB’s diagnosis was a bit gentler, but it was also a valley. We had a tumultuous year of kindergarten; my son’s IEP was being constantly being broken, and I had COVID in September which led to full kidney failure into October. This put me in the hospital for a week and on dialysis three times a week for three hours from October to March.

These were not gentle, kind times in my life. They were times that I consider my valleys. I am a person of faith, so my belief system is the foundation of who I am and the choices I make—but I also know that not everyone has the same faith or has faith, and I respect that, so I am going to try my best to write for both audiences-please give me grace.

The Choice

I had a lot of choices both times. I am a naturally stubborn person, and I can be strong minded in my convictions and beliefs-whether they are faith based or personal-and I tend to die on those hills. I guess it can be a blessing in a lot of ways.

In each of these situations, I had a choice of how I was going to look at the situation and how I was going to handle the situation. Now, do not think that I am a robot or a saint—I did not always think or react in a wonderful way. I will probably write some personal blogs about that down the line but today we will dive into my choice about autism.

When I faced my children’s diagnoses, I could choose to look at autism as a bad thing or a good thing. I had a choice to make. A lot of times, our feelings are deceitful and fleeting. The are in the moment and they can be strong and passionate but just as quickly as they come, they fade. Feelings also are like waves and seasons; our circumstances impact them, and they change. I felt like there was a lot of things within the diagnosis and life that I was not in control of, so I really needed to be in control of something-and the bottom line is-that something was myself. How was I going to approach my parenting journey with autism?

Peace and Understanding

I chose to rest in it. I chose to pursue answers and research. I chose to accept my children for who they are and even take joy in who they are. I eventually decided to homeschool to better meet their needs because I felt that public school didn’t treat the aspects of autism as a good thing. I want to teach them to advocate for themselves and what tools help them. In order for them to do this, I have to advocate for them, and I have to teach them what tools help them. In order for me to do this-I had to accept them for who they were and accept the autistic traits for what they were.

Autism is part of who my children are. It’s not the very essence of who they are but it’s as much part of them as I am part of them, or my husband is part of them. And I don’t want them to look at any part of who they are and hate it. I want them to be confident in who they are because the world is not always kind to them-even when they were toddlers-there were parts of the world that was not kind to them–and there are parts of the world that will not be kind to them so I need them to be confident individuals who can say “Yes, I am autistic and I respect and love myself.”—and in order for my children to do that in the future, they need to hear me say “Yes, you are autistic, and I love that part of you and I respect that.”

This mindset brought a lot of inner peace and stabilized me and my emotions. My faith helped a lot in my journey also. My belief is my God made my children with autism for a reason-He purposefully created them this way. It is not because of the consequences of a sin fallen world but instead-God knew the world needed the minds of autistic individuals to grow civilization and to make waves. So, I say “my children are fearfully and wonderfully made. They are purposefully made for such a time as this” especially on the hard days.

Hard Days

I am not a saint. I have hard days. There are days I mourn the hard stuff or stuff I witness kids my kiddos’ ages do—that my kids don’t do. It was worse when they were in public school, but it can be difficult at times now. There are things my children cannot do that I would love to see them do. And I do take the time to acknowledge it, sit with the grief for a moment, then I get up and move on. There are days that I sit, and cry and I don’t necessarily have any friends that truly get it so when I speak about it with them–it’s hard for them to fully grasp and sometimes I feel like the only one on this adventure. I kind of think everyone feels this way though-they just don’t speak it. Parenting is hard.

The Beauty

There are more beautiful days than hard days for me. I see my children grow every day. I have the blessing of homeschooling them, so I see my children accomplish things that I never thought they would accomplish or things that took FOREVER to accomplish. When PK was diagnosed, we weren’t sure if he would be independent. I have gotten a first-row seat to a daily miracle of God and what answered prayers can do. My faith has grown so much because of parenting children with autism—when I had no one to talk to, I had God. I never sat by myself and cried; God was there.

Parenting autism also taught me to be a better human being. I learned that behavior is communication and a lot of time that a child is not being defiant or disobedient because of a heart issue or a faith issue—but because there is something going on. A physical need is not being met, or an emotional need is not being met. My daughter is not always being rude and withdrawn because she was an attitude problem and is spoiled-but because she is overwhelmed by the noise and the crowd, but she doesn’t have the words or emotional intelligence to communicate that to me. It taught me to look at EVERY child and human in this manner and to just be patient with people.

Parenting autism also taught me not to judge. Man. Before I had kids-there was a lot of things that my kids were not going to do–my kids were going to be so saintly—they weren’t even going to be human. And God laughed. I swear-He laughed so hard, all of heaven and hell heard Him and He may have even tinkled Himself. You name it-my kids did it-even my oldest who is not autistic. Stone the bus driver with small rocks and pencils? Check. Lick all the refrigerator and freezer doors in all of Walmart, so that their immune system was well prepared for COVID? Check. Throw a fit in Sunday School with the world’s most perfect mom being the Sunday School teacher because she would not give her an extra piece of candy? Check. The list continues.

Honored

I am not just finding peace and resting in the fact that I am parenting a child who is autistic—I am honored. Do you know about all the wonderful autistic individuals out there that have made huge differences in our world? One of my favorite people with autism and one of the most impactful, not just on my childhood, but also on my children’s childhood is Satoshi Tajiri who is a Japanese video game creator that keyed in on his passion of collecting bugs and created Pokémon. Let that sink in….. if Satoshi Tajiri was not autistic and enjoy collecting-we may not have Pokémon.

My other favorite person who is autistic-Temple Grandin. I first learned about Temple Grandin when I first received my son’s diagnosis because I wanted to hear about autism from an autistic person and the search engine led me to her. Her insight shaped a lot of my foundational thinking and how I began addressing my children’s needs. She is a speaker for autism but also is an animal behavioralist. In one of her books, I read, she figured out a more human way to slaughter cows without them feeling so much anxiety by addressing the environment from their standpoint.

There are also many people in history that are believed to have been autistic that were amazing scientist, poets, inventors, and artists due to the characteristics used to describe the individuals-and they made huge impacts on civilization, medicine, and culture.

At the End of the Day

Parenting is hard. I have three kids-each one is unique, and each one brings me joy. Each one has their trials, and each one has their hard. I sometimes sit and think who my children would be without autism, and I can’t picture it. They would not be them. When I think of PK, I think of his big smile and sweet personality, I also think of his loud, scripting and I smile. Just as when I think of HB and her excitement and nighttime cuddles, I think of her carrying around her weighted stuffies. They walk hand in hand and one without the other just isn’t how it is supposed to be-and I choose to rest in it.