I’m about to talk about something that is going to probably upset people, and for that, I want to apologize ahead of time. This isn’t meant to cause ANY harm to anyone. However, there are a few things I want to clear up as I have been thrown into the world of becoming a parent of an Autistic child. My son is almost 5 years old, and while our diagnosis is relatively new, he has been autistic since as long as I can remember. My experience in his world and with his Autistic brain has been since he was born. Since he was born, we have fought so hard for him to reach every single milestone. We have had to teach him to do everything that a neuro-typical child does naturally. This is our truth, and not meant to drive you to pity him or our family. He is a smart, intelligent, vibrant and sweet child. Despite everything he faces both medically and developmentally he has the most incredible spirit. I see a fierce desire to live and thrive in his spirit.
I have had a unique experience of not only being a mother to an Autistic child, but I am also a parent of a child that is medically fragile. My son has a very complex history, and at this point, we have not been given a primary diagnosis to explain all of the diseases. We are searching for our umbrella diagnosis, but we take it day by day with his health. Most of my time parenting has been to help him live, to treat the diseases that complicate his well-being, and to educate and advocate for him. When I was given the new hat of “Autism Mom,” my perspective was really very different than a lot of parents that are in the Autism community. This isn’t right or wrong, but it is a different angle since we have to care for his life threatening conditions and Autism. I realize because my perspective is unique I wanted to share a few things I want you to know about me as a parent of a Medically fragile child that is also Autistic.
- I do not want a cure for Autism – Yes, autism absolutely has complicated his life, but his life is also full of beauty and amazing wonder I have ever witnessed. The way that he sees the world hears the world, touches the world, and experiences the human experience has taught me so much about the enjoyment and the stress of everyday life. Some people will say that because I don’t want a cure, I must have a child that is high functioning. This isn’t the case at all. My son is on the spectrum, period. He has areas he absolutely excels in and areas where he struggles. I would love to improve his areas of struggles, but I don’t want to cure him. I actually believe that he is uniquely who he is because of Autism. His neuro type cannot be changed, and I will not practice any experimental procedures or medicines to change his neurological makeup.
- I don’t want to be a Martyr – I have to deal with a lot to be his mommy, but it’s also a part of parenting a child. Many people will tell me that my strength is beyond their comprehension. When we explain his diagnosis and his life, we are applauded for our care for him. I do appreciate that people recognize that we are working hard for our child, but I don’t want to be a martyr because I’m caring for my son. Any parent that would be faced with our situation would take the steps they need to make sure their child has the best possible life. When you are put in this position, you have to dig deep and find a way to muster through the struggles. There are days I cry, I am frustrated, and days I feel very alone. You can absolutely tell me I’m a great mom, but I’d rather you say it was because he was a happy, polite and sweet child.
- I feel very alone – It isn’t that my son is medically fragile or has autism that makes me feel alone, but rather how these particular issues do impact our lives. We have to keep him safe and away from illness, and we have to ensure his sensory levels are not so out whack that he meltdowns. None of this is a burden to me because my number one priority in my life, my ministry, and my focus is on his development and his health. I miss out on a lot of things that happen in the world. We miss play dates, we don’t go to events that a lot of families do, and we cancel a lot of plans because our lives are very unpredictable. It’s hard to have friends and nurture relationships when I am doing everything for my son’s development and safety. My ability to be there for people has depleted, and my ability to relate to people, not in my world has decreased. While I crave social interaction and friendship, it is incredibly hard in this season for me.
- Autism is not a Death Sentence – I read a lot of misinformation out in the world about Autism, and I admit before his diagnosis I was very uninformed about the spectrum. Some organizations claim to support the Autistic community that put out media that put fear into people. Autism is not a death sentence. Yes, there are struggles with people who are Autistic. However, there is also a lot of information out there that demonstrates that many adults living on the spectrum can live healthy and happy lives. Not all adult Autistics will need to live in a group home or with family for their lives. There are thousands out there in the world that are making amazing and meaningful contributions to the world. Even if they need support in life, they can still become productive and happy adults. Yes, Autism is listed as a Disability in the United States, but there are millions of people living with disabilities every day that are doing amazing things. Instead of being scared about Autism, I encourage you to learn about Autism here at Autistic Self Advocacy Network.
- I talk about Autism a lot – You will see my facebook and social media flooded with articles about Autism. You will see links to videos, articles, books, and blogs about Autism. My life is 100% entrenched in being a parent that learns as much as I can to help my child. I need to read, learn, and advocate for him. This means it is often the first thing on my mind, and the one thing I think of the most. This isn’t because I want attention or accolades, but it’s because the only way to make a change in this world is by using our voice. If you want to see change, you have to be the change. I want my son to live in a world where there is less stigma regarding Autism, and I want him to feel proud that he is different but he is not less than anyone else. I want to change the way we talk about Autism, see autism, and how the world sees autism. My child has the same dreams as any other child, and I desperately want him to fulfill his dreams. I will talk about Autism until everyone in this world knows there is nothing to fear. I encourage other moms in this community to step forward and use their voice too!
If I can impress on anyone reading this today, it is that Autism is a neurological condition that is life long. However, it is not a disease. It is simply the way an adult or child processes and sees the world. Every single person that is Autistic has gifts, and they all have areas where they struggle. They are not monsters. At best they are misunderstood, and they need those of us in the Neuro-typical world to stop trying to change them. We as parents can certainly help them have the best life possible. I encourage all parents to focus their time and energy on loving their child for who they are and finding ways to help them have a happy life. In the end, all that matters is how we love, how we treat others, and the grace we extend to anyone struggling. Please try not to judge another parent. We don’t need judgment – we need love.