Raising a child with autism has its share of challenges and joys, and it’s not always easy to express them. Oftentimes, we hold our tongue, knowing that most people have the best of intentions even if they misunderstand our world.
While sometimes it’s best to leave things unsaid, here is a list of the nine things that many autism moms would like to share:
1. Don’t tell me my child will grow out of it
It’s not that I don’t want to agree with you—or even that I don’t think there are elements which he will grow out of—but as an autism mom, I spend so much of my life setting him up for success. We do therapies, food restrictions, sensory diets, chiropractic care, ABA therapy, and when you pass it off like it’s a silly phase, that just makes me feel like you think I’m overreacting. That makes me want to avoid talking about my son’s progress and struggles with you, because you so clearly do not understand the nature of his diagnosis.
2. Just let me have a bad day
You don’t always have to tell me that “even typically developing children do that.” Yes, I’m aware. As a parent of typically and atypically developing children, I am fully aware that ALL children have bad days. I am also aware that mothers get to vent to their friends about it without being corrected that the frustrating behavior is “typical.” Guess what, I’m a mom, and sometimes my struggle is not related to my son’s diagnosis. Sometimes, we’re just having a bad day, and I would like to be able to share that with a friend without being corrected and informed that said behavior is well within the “normal” range. “Normal” kids are hard sometimes, and I have my limitations. Please allow me to have a bad day.
3. Please don’t give me advice on discipline
You know how you have that one friend who has no children and always tells you, “When I have kids, I will never give them candy, and they will go to bed when they’re told, and they will pick up all of their autism toys and never talk back” and you think…”OMG, you are so clueless. I can’t believe I used to be that clueless.” That’s how I feel when you try to give me disciplinary tips for my son. Trust me…it’s not that simple. It’s just not.
4. Forgive me for talking about it so much
As much as I wish we had gotten the diagnosis, signed up for “treatment,” and then everything was business as usual, that’s not how it works. At first I cringed at how people used a title like “Autism Mom” or seemed to talk so insistently about their child’s diagnosis. In an effort to never become one of “those moms,” I was avoiding a lot of conversations and topics. But when you have a child with autism, it becomes an inseparable part of your world. Imagine if you tried to avoid implying your child’s gender in any conversation. Give it a try—you may find that it just seems to come up more than you expect. Sometimes, I may feel I need to give you a little insight into the diagnosis to help you see how big a milestone is, or how discouraging a setback may be. Sometimes I’m just telling you about my day. I know my son is more than autism. Please don’t think that I feel it defines him or that he is limited to it. It is simply a part of him and a huge part of my family, but I see him for all of his individuality and abilities. I know that he is bigger than autism and that it cannot hold him back.
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5. Ask me questions
I want you to ask questions, because I know that if you better understand why my son does or doesn’t do things, you will have a greater love for him. You will have a deeper compassion, and you will better see how amazing he is. My son is so incredible. You may simply see a child who easily tantrums and doesn’t talk much, but if you asked me questions, I could explain to you why we think he isn’t speaking, and how we tried to use Picture Exchange Communication System(PECS) cards for communication, but he wasn’t interested because he developed his own communication system. I could tell you how brilliantly he communicates without saying a word. I could tell you how his stimming behavior is actually an attempt to self-regulate and how people stim all of the time: chewing fingernails, twirling hair, tapping fingers, etc. Ask me why I allow certain behaviors, or what the difference is between a meltdown or a tantrum. Ask me why he is so set in his ways, and if anything can be done to make him more flexible. I go to workshops, read books, and work with my son constantly on the issues you are noticing. I would love to share our progress with you and tell you about what has worked and what hasn’t. I can help you understand how anxious he can become when he is unprepared for something. I can explain to you how even a simple tantrum because he hasn’t gotten his way (as all children sometimes do) can spiral into something bigger, where he may self-injure or not be able to catch his breath because he has become so fixated that he is not able to detach himself from the desired object. Oftentimes, distraction does not help children with autism, and if you take that out of your mom tool belt, you will find it is no easy task to parent without it.
6. I am scared
I am afraid my son will never speak. I’m afraid he won’t be able to show other people how amazing he is. I’m afraid he will have psychological issues brought on by the autism. I’m afraid he will feel frustrated and misunderstood as he grows up. I’m afraid there will be certain medical issues that are often common with autism. I’m worried that he won’t be able to have all of the things that everyone else takes for granted. I’m concerned that I’m missing something. I am scared that I’m not doing enough for him.
7. I feel guilty
I can’t help but believe that there’s something I shouldn’t have done, or something I could do that would make it easier for him. I wonder if he would be talking now and telling me all of his thoughts and asking me for his simple wishes. I see him uncomfortable in clothing, feeling overwhelmed, or even happy, but I don’t get to know why, and sometimes I just wonder what I could have done. What if I’m missing something? What if there’s one more thing I should be doing? I logically know that there’s a genetic component, and I tell myself that we are doing so much to support him, but I still feel guilty.
8. Autism has changed me
Autism has opened my eyes, released my heart, and cleared my mind. When I hear about another mom’s struggles, I no longer judge her actions and think I could do better. I understand that people are different, families are different, and there is no one-size-fits-all. I now see how amazing human development is and how awesome God is. I no longer have a head full of answers, but I do have a heart full of compassion. I have found support from strangers, and I’ve felt isolated by family. I’ve seen the sheer goodness of community and the cruelty of ignorance. When I became a mother, I saw the world differently. I began to see each person as someone’s child, and it helped me to love deeper. When I became an Autism Mom, I saw the world differently. I began to see each person as overcoming their own struggles and handicaps, and it made me love freely.
9. I am proud of my child
I don’t always get the chance to boast about my son in the “typical” ways. Sometimes it is too hard to explain what I’m proud of because unless you’re in my home, you might not know the things we’re working on. Some things may seem small to you, but they are huge for us. Sometimes I don’t know how to share the positive without exposing my son in ways I don’t think would benefit him, so I keep a lot to myself. Whatever the reasons, sometimes I feel like his autism is front and center but his accomplishments take back-stage, and I don’t want it to be like that. I burst with giggles like a schoolgirl when my son hits a new milestone. I think he is incredible, and I love EVERY single thing about him. I know that I am blessed to have him, and I wouldn’t change one thing about who he is.
Life is a like a mountain that never summits, but if you love your tent, it’s a grand experience. Janaiah von Hassel is raising two young boys with her husband, Matthew, and enjoys her career as a freelance writer. Author of the children’s book Kiro Kidz Power Up and a volunteer for Parent to Parent of New York State, Janaiah is a seeker of peace, a lover of life, and a sucker for adventure.
This article was featured in Issue 58 – The Greatest Love of All: Family