I think a lot of people have different (often inaccurate) ideas about what exactly autism is. Every child with autism is totally different. It is a spectrum. For our family, autism isn’t easy. Life with autism is rather difficult most days because Serafina is very curious and needs to be watched constantly. She is also not fully potty trained and that makes for a lot of accidents! Serafina needs all of our constant care and attention. In many ways she is still like a baby. She has no speech and cannot dress herself and she can easily get into trouble if she is not supervised.
I thought that I would take some time today to reflect on what autism is for us. I am not going to sugar coat anything in this post, but share our reality and Serafina’s reality as well, quirks and all. Hopefully this openness will also help other parents feel comfort in the fact that they are not alone in their feelings or in the reality of some of the strange and embarrassing things they find their children with autism doing.
First off, life with autism has changed everything. There are a lot of things we can no longer do as a family any more because of autism. There are also things that should normally be no big deal (like eating a meal, visiting family or friends, having a bath, doing a craft, or reading a book), that are made very difficult, stressful, or impossible because of autism.
What I most want people to understand is that I love Serafina and think of her as I do any of my other children. She is my daughter and I love her exactly the way she is. What bothers me is how I feel well-meaning people see her as wrong or bad or in need of being different or better and assume that I view her that way as well. Maybe some parents really do have a problem with their child’s autism and view it that way, but for Craig and I (and many other parents), that is not the case. I also feel like there are many people who I have talked about autism with who assume that is how they would feel under the circumstances. Sort of like, your child has a disability and it is the end of the world. You must be super depressed about life now and view this as a complete burden and obstacle to overcome.
To me, Serafina is who she is. Life can be difficult and have many challenging moments for sure, but it is also the way it is and we accept what we have been given, knowing that she was given to us all for a higher purpose. This is the way I know and live my life. Autism is in our lives. That is a fact. If Serafina were to change and be able to ‘function better’, or be able to speak, then of course I would accept that change as a part of who she is as well and that would be our new normal, but for now life with Serafina’s autism challenges and quirks are our normal.
I guess that I just feel like some people misjudge our attitude towards autism. Some people think it is no big deal and it just means she is super gifted or smart, while others think life must be awfully difficult and see it as something really unfortunate. The truth is, life with autism is neither and both of those judgements at any time. Life with autism is constantly changing and learning to adapt to the changes and the emotions it brings. With autism, there are many phases that we see Serafina go through, some difficult to deal with and others we just accept as a part of how she is at that given time. Autism is like yoga, teaching us all to be flexible and adaptable to change. To watch difficult moments come and go. To recognize the impermanence in all things and to be grateful for what we are given, seeing how truly special it is that we have this opportunity placed in our path to grow into more understanding, compassionate, loving and sacrificing beings.
Autism is also about perspective, which directly correlates to the energy in our home and in our lives. How we decide to see our life with autism and handle its challenges is very important and is directly connected to the energy we emit. If we view autism as a burden and feel sorry for ourselves, then we harbour darker thoughts and emit a negative, depressing energy. If, on the other hand, we accept autism as a part of our lives and love and accept Serafina exactly as she is, believing that everything happens for a reason and we feel gratitude for our life, we emit a positive energy and a higher vibration. Since children with autism are especially sensitive to energy, perspective is huge. Craig and I are both aware that our perspective is extremely important for everyone in the household. This is true for everyone, but especially for sensitive beings with autism.
That’s not to say that I don’t have times of self-pity or wishing life were easier. Of course I do! But truthfully, more often than not, I view life positively and with gratitude, (even though some people may find that hard to believe or don’t believe they could possibly stay positive under the reality of life with autism).
I wanted to post this today for people to have a better understanding about what autism can really be like and for my own family, or people who know us, what Serafina is like. Serafina goes through many different little phases and obsessions. Lately this is what autism is in our household, for her and for us.
- Crying & whining
- Laughing at nothing in particular
- Climbing onto the counter
- Eating margarine from the tub
- Margarine as hair gel
- Having many baths
- Flipping through and ripping up books
- Eating crayons
- Putting everything in your mouth
- Never going to bed
- Sleeping on the floor
- Needing a specific blanket
- Wearing only sleepers
- Wearing six sleepers at a time
- Refusing to wear any clothes at all
- Running into the streets
- Painting the windows with saliva
- Attempting to eat from the garbage can
- Having your own language
- Getting frustrated that people don’t understand your language
- Giving and receiving love in a different way
- A love for car rides
- A love for dancing and spinning
- A love for patterns and specific organization
- An obsession with water, pouring it back and forth
- A love for juice and fruit
- Having your own interests
- Seeing and processing things differently
- A special diet
- Running many baths
- Using the mop often
- Many bottles of spot shot
- Lots of laundry
- Trying in vain to get clothing onto a wriggling, naked child
- The end of a social life for mom and dad
- Difficulty going anywhere in public
- Difficulty having anyone over
- Occasional Embarrassment
- Stress and anxiety
- Rarely, if ever getting a baby sitter or a break
- One wild ride!
I hope that in sharing some of what we experience on a daily basis with autism it will help other parents and families who are new to autism not feel so alone in what they are going through during the beginning stages of diagnosis and acceptance. To know that autism does come with its quirks and that parents of children with autism have difficult days and moments (often). I share in your struggles, feelings, and fears.
I also want to tell anyone who has experience with autism in their family that it is ok to feel what you feel. You don’t have to feel how a book on autism says you should feel (guilty, depressed, or sad). If those feelings come naturally (which they will at times), let them come, but don’t feel bad if you don’t feel bad! I struggled with this a lot in the beginning because I didn’t really feel bad after getting Serafina’s diagnosis of autism. Life was still life. We carried on as we did before the label. Then I got books on autism and a lot of what they were saying was about grieving and acceptance. I never really felt like I had to grieve, but the more people who knew about Serafina’s autism would also always interpret it as an extremely sad and negative thing, offering us sympathy. I felt bad as a mother not grieving. I felt at one point that not feeling sad was bad of me, even though I knew that perspective and negative energy would totally not be beneficial for any of us.
So, feel whatever you feel when you feel it. Whether it is sadness, self-pity, guilt, doubt, anxiety, fear, joy, love, acceptance, (tired), whatever! Feel it and go with the flow of changes you will inevitably feel during your ride with autism.
Your daughter is so adorable! I see so much of my son in her list. And so much of my life in your list. I get it! Hugs to you!
I love your lists… After reading your post, I silently started to make a list in my head. Fortunately, our son is still very much a social bug and we can go out and have people over and it still remains very pleasant. And of course, my son being hypo-reactive, he has no issues with clothes. He will actually start to cry if he loses a sock or a mitten. He also loves hats. Like you said, they are all different aren’t they? And like you, I’ve been on the receiving end of the “why aren’t you freaking out?” speech. I was actually told to “stop glamoursing autism” because I was telling a friend about how adorable most of his quirks were. I think the comment would translate to “stop glamourising and start reacting”. Like you, I chose to embrace his brain and all the connections it makes. I always tell people that it isn’t a disease, it is the ways he is :
“My son has blond curly hair, blue eyes, he loves dinosaurs, loves a good wrestling match, doesn’t like mash potatoes and is autistic.”