Why it’s okay for parents of autistic children to not be okay…
I have little tolerance for first-time moms who feel it’s their need to tell me how to parent my four kids. Your baby is a month old! Don’t tell me how to parent my 10-year old.
To be honest though, I was that first-time mom. I thought that my background in psychology and child development gave me enough knowledge to be able to talk about kids – and as soon as the umbilical chord was cut on my first child, I thought I had the RIGHT (even the responsibility) to say the things I knew.
What’s worse? People who don’t have children telling me how to feel about what happens to my kid. Over and over again in blog posts, some even directed at me personally, I am told that I am a bigot for saying that “autism is hard.” They tell me that I don’t accept my son for who he is because I had a time of grief after his diagnosis, and that I hurt when his autism causes him heartache. They tell me that I am being “selfish,” that I am grieving my false expectations, or the “perfect child” I didn’t have. They say, “no, it has nothing to do with his autism. It’s you.” That I need to “get over it” because it’s harmful to my child.
Their advice? Parents should be able to get their child diagnosed and just move on. There is no need for grief; all we need to change is our attitude. Acceptance means that we have to be okay with our child’s autism from the get-go.
There are many things I can agree with. I do not hate autism. I see Casey’s autism as an integral part of who he is. I see the many unique abilities that it adds to who he is. I love him for who he is – not because of nor in spite of his autism. I love him because he’s my son and just a fantastic kid. I also want other people to love him for who he is, autism and all. I want him to grow up to be proud of himself, to accept himself.
In a way, they’re right, part of the grief I had at Casey’s diagnosis was over What Could Have Been. Yes, I was sad because I had mapped out a life for him that had all but gone out the window.
When Casey was diagnosed, they couldn’t tell me if he’d ever talk, potty-train, or read. I was crushed. I am a mother. I want all of my children to have happy, wonderful lives. Back then, I had a different view of what success was, and even of what happiness in this life meant. My view on all of that has shifted radically. I believe now that what matters most is that my children are happy and are doing their best in this life.
But it was a journey. A journey that each parent who has a child with special needs must travel. To tell a parent that what they are feeling is wrong doesn’t do anyone any good. I don’t care if you have the same diagnosis as the child. Until you’re a parent and go through it yourself, you just can’t understand.
Sure, these bloggers get along well. I see how they articulate their ideas in their posts and their hateful emails to me. Some have gone to college, have found someone to love, etc. That doesn’t mean that that’s the only future. And even if it is, it doesn’t mean that I can’t hurt a little when I visit my son at school to find him eating alone. That I can’t be sad when he’s sad. That I can’t also feel anguish that he feels when he’s in the throes of a tantrum he can’t climb out of. I feel this not because I hate his autism, I don’t; I feel this because I am his mother.
Invalidating the feelings and the journey of parents does nothing to help children with autism. It only creates more distance between the parents of autistic children and autistic adults. We need the wisdom and the perception of autistic adults. We learn so much from them. We need their perspective on what our children see and feel. What we don’t need is to be told how we should feel by people who haven’t walked a mile in our shoes. That the feelings we have are wrong. They are not wrong.
I have moved to a place of acceptance with Casey’s autism. My journey to get there helps me empathize with parents of the newly diagnosed. Again, this is an empathy that some of these autistic adults don’t quite understand – not because they’re autistic, but because they haven’t traveled this journey as a parent.
I am in no way saying that every autistic adult says these things or even feels this way, it’s really a very vocal minority, but I have found that autistic adults who have children are kinder and way more understanding of my emotional journey. They get both sides: that autism can be an asset, but also that we don’t want our kids to have a tougher time in this life than is necessary. I think that comes with parenting ANY child, not just autistic ones.
When I was a first-time mom, I thought that I had it all figured out. I thought that my experience with nieces and nephews, with babysitting and all of the books I read and courses had taken had prepared me for parenthood. While it was helpful to have that knowledge, it did nothing to prepare me for what I would FEEL. Feeling is good. Feeling is necessary. What we feel as parents helps us think more of our children. It moves us to do more for our children. It forces us to step outside our comfort zone and advocate for the needs of our children.
I am not sorry for the feelings I had after Casey was diagnosed, and they are absolutely no reflection on how I feel about HIM. It was okay to not be okay for a while…and even from time to time now.