Wednesday, September 26, 2012

Parenting (Autistic) Kids is Hard

“Be kind, for everyone you know is fighting a hard battle.”
Being a parent is hard. Really hard. When I say that, I don’t mean that I wish that I hadn’t had children or that I wish they were easier kids. I mean that raising other human beings that you love more than you love yourself is breathtakingly difficult.

Your child’s struggles—his anxiety, her aching desire to fit in, their stumbles and bumps as they travel their roads to become adults responsible for themselves—can be inspiring, heartbreaking, hilarious, scary, remarkable, stressful, unexpected, delightful, worrisome…add your descriptor here.

Sometimes it is many things at once.

It is impossible to know what it is like to be a parent until you are one.

Ever since I started blogging about my kids, which has been five and a half years now, I have consistently gotten emails, messages, tweets, personal hugs, and all other manner of communication thanking me for my honesty in writing about just how damn hard it is to raise kids. People tell me that they thought they were the only one. They tell me that they thought they were alone. They tell me how much it matters to them to know that they are not the only ones who are struggling.

Sharing that bond over the difficulty of parenting and acknowledging that it is so hard and even that sometimes our kids are assholes, well, that acts as a safety valve that releases pressure. Knowing that we are not in it alone, especially if the act of raising our children isolates us from each other, sometimes helps us make it through a heartbreakingly scary day until we can get to a delightful one.

Raising a child with autism or another disability often imposes even more isolation upon parents. In addition to the joys and problems that parents of typical kids face, we have a whole other set of hurdles (and, yes, a whole other set of joys as well). Yes, we get to experience the unique point of view that our special needs kids bring to life and we get the amazement every day of seeing what our beautiful autistic kids are capable of. I wouldn’t change the neurodiverse makeup of my family even if I could.

But we also face great challenges. We have to decide how best to help our children with their extra struggles in the face of confusing and conflicting information. We have to learn to advocate for our children, something that isn’t always easy, and is often extremely difficult. We have to help them navigate the social difficulties of the world, even if doing so is hard for us ourselves. Often we end up losing friends and family members because they don’t understand what we are going through, because our stresses are too much for them, because they want us to fix our children when all we want to do is accept and teach them. We lose the ability to socialize on the school playground because we have to keep track of our kids to keep them from “eloping” or having problems with other kids because of social difficulties. Some of us can’t leave our children alone ever, even in our own homes, and still count on them remaining safe. Most of us worry about making sure not only that we safely usher our kids to adulthood, but that we are prepared to keep them safe and cared for once they are adults and even once we are gone.

We aren’t underestimating our kids. We aren’t feeling sorry for ourselves. We believe in our children’s genius and their good and their capacity to learn and contribute and be happy. We are hoping for the best, but preparing for the worst. When you have a child, when you are a parent, that is what you do.

I’m not saying it is harder for us than it is for our kids. And I am not saying that people should pay attention to our needs more than those of autistic children and adults, but I am saying that our road is valid and important as well. I am saying that watching your child struggle in the way that autistic children do can break your heart. I am saying that parenting autistic children is hard.

This is not to say that I wish Jack—or any of my children—were different, were typical. This is not to say that I do not accept my child exactly as he is. This is not saying that I want pity or kudos for my parenting. This is only to say that parenting is sometimes hard.

Just as it helps parents of typical kids to hear that they are not alone, the same goes double for parents of autistic kids. When a struggling parent hears, “Yes. It’s hard,” “You’re not alone,” “This is what my family tried,” “It gets easier”? That can be life-saving.

I know a lot of parents of autistic kids and a lot of them feel like they can’t say publicly that it is hard to raise their children. They feel that if they break down and say that they wish they could have one easy day that they will be accused of not truly accepting and loving their own kids. Valid or not, they feel that they are criticized and judged whenever they say something negative about raising their children.

I know that there are are parents who don’t accept their children’s autism. I know that there are parents who want to “fix,” who want to cure. I know there are parents who do not speak respectfully about their children. However, most of the parents I know would fight lions with their bare hands for their children—exactly as they are. I know many, many parents who do accept their children as autistic—really, truly do—but who sometimes have days when they just can’t hack it. They know they will be able to pull it together tomorrow, but they need someone to tell them, “It’s okay. Yes, it’s hard. You’re not alone. You can do this.”

I believe that it is vital to hear autistic voices. I know that the number one thing that brought me to my place of acceptance and embrace of Jack and his autism soon after I first started learning about the spectrum was reading things written by autistic adults. Without question, I believe that their voices are the ones that we should follow. I know that just as you cannot know what it is like to parent an autistic child unless you parent an autistic child, you also cannot know what it is like to be autistic unless you are autistic.

Likewise, none of us can truly know anyone else’s experience. Your experience growing up autistic is not the same as my experience growing up autistic and neither of us had the same experience that Jack has growing up autistic. But we can all learn from each other, as long as we are willing to listen. I believe that conflict drives conversations forward and that dissenting opinions make everybody think harder.

But most parents really know their kids. And most parents really try hard. And most parents love and embrace their children for who they are. And even if everyone doesn’t, we can’t assume that just because someone says it is hard to parent their child that it means that they don’t accept everything about him. And just as it is vital to respect and amplify autistic voices, it is vital to let parents have hard days without judging them.

I know that autistic adults often feel disrespected by parents. I understand that, because I hear some things spoken by parents that bother me terribly (and vice versa), but many of us want nothing more than to respect both parents and autistic individuals. Sometimes we have to take a chance and lead with respect in hopes that we will be met with the same.

I have three beautiful children. They are amazing gifts to me. Some days, however, I want to sell them all to the highest bidder. When I write about feeling that way, I hope that I do it with humor and respect, and I also hope that some other parent out there reads it and is stronger for knowing that she is not alone.

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They are everything to me. But sometimes “everything” is overwhelming.

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