By Holly Standfield
So what is it like to have a child with a disability?
It is kind of like a death. No matter how much you plan to allow your children their freedom to reach their own goals and dreams, quite naturally you have a few dreams for them as well. You dream of birthdays and holidays. Santa and presents. Playing dress-up, doing arts and crafts, playing Chutes and Ladders, dance classes, sleepovers, team sports, high school and college graduation, getting married, and having children of their own to love. And, though many of our autistic kids will grow up and have and do just those things, more than half of them won’t. Not without a great deal of help and not likely to resemble the typical joy of those things. You mourn for what might not be. You mourn for what you and your child is missing now. And, later, you may mourn for what will never be.
You are ever so deeply in love with the child you have. She still does adorable things you want to share with others. She loves you too, but the rest of world won’t always get to see it. You will see pity in people’s faces and they won’t ever understand the deep and real joy this child gives into your life every day. As a parent, you always have pride in your children. People won’t see what you are so proud of. That can be a lonely feeling.
You don’t have to try every diet and therapy that is out there. Just because my child has autism doesn’t mean that Jenny McCarthy’s gluten free diet for her autistic son is going to work for my daughter. Of course, some have had great success while others move from one fad to another. You don’t have to try or read everything that is written about Autism. Most of it doesn’t pertain to your specific circumstance anyway.
Guilt blasts you from all directions. You want to have the perfect birthday party. Your child may not be the least bit interested in the presents, and you will dread the disappointed look on the gift giver’s faces. You sometimes have to decide not taking your child to others’ parties. You want more than anything to give your child the experiences typical children have and feel guilty when you don’t. But sometimes it is simply too overwhelming for you both to undertake. It just seems you can never do enough and that guilt weighs more than an elephant.
You live with uncertainty of the future. None of us know what the future holds. If you have a “typical” child, you can be mostly self-assured they will have friends, be self-sufficient, and love. You know who to leave things to when you die. If you have a child with a disability, you don’t know how to plan your estate. And what if they grow to do well and are able to care for themselves? Every option is insufficient. Uncertainty can affect every part of your life. Will she ever be toilet trained? You just won’t know until it happens or it doesn’t. You live with the fear that one day your aging, vulnerable child will lie sick or dying without the comfort of someone who truly loves them.
You will lose friends and cut strings with some family. Not everyone believes that your screaming child has a behavioral problem. “Just give them a good spanking!” I was a firm believer in spanking until I had my daughter. She literally doesn’t understand the concept. To her, it is hitting and hitting seems ok to do where other children know that it is a disciplinary action to make sure they stop doing it. I have had to let go of some friendships that I never realized were poison through this ordeal. Even my neighbors have stopped letting their girls play with Bailey since her diagnosis. It’s not leprosy folks. Don’t look back on the lost! You will gain some beautiful, healthy friendships in the process.
You will most definitely experience marital issues and severe depression. Both parents. Seek help! There are outlets. Whether it is through a blog or message boards or a real person, seek someone out. No one should ever go through this alone.
Spontaneity is no more. You can’t just get up and go whenever you want to. You have to plan an escape route from any activity or location. You have to pack or plan things to distract her if she becomes upset. You have to determine if there will be straws for drinks because she cannot wield a cup the same as a typical child. If they aren’t potty trained, you will worry about where you can take your child to change a diaper that will afford you both some dignity. Everythingmust be planned and considered.
You grow an incredibly thicker skin. People stare. They will stare with antipathy, thinking your kid is simply behaving badly. They will look in curiosity, because that is our nature. They will stare in fear or pity. And then you recall a time in life that you, yourself, made a judgment about another person in public. Exasperation mixes with humility and all you want to do is get out of wherever you are as soon as possible. Try as you might, you can’t escape everyday life.
Everyone has an opinion. There are those who are certain they know how to “fix” her. There are those who don’t think you do enough. I have had a friend who told me that having her in all of the therapies would be committing social suicide. There are those who believe you to be a glorified soul. Some opinions are meant well but are only tolerated for so long.
It’s love. A love that you, if you are a parent, know exactly what I’m talking about. A love that, if you don’t have a child born with difficulties in this crazy, judgmental world, you can’t. Unconditional doesn’t even begin to envelope it. Incomprehensible. Unlimited. Unending. It’s the kind of love that haunts you every moment of every day. You can see that love behind the eyes of every special needs parent you meet. We are brimming with a love we never could have foreseen. We are overwhelmed with concerns we never could have imagined. We are, easily, at capacity almost every day. Yet, when necessary, we find that capacity expands. We aren’t better parents than other parents. We aren’t saints. Our children aren’t lucky to have us but we are lucky and ever so blessed to have them. Even through the challenges of having an autistic child, none of us will walk away from this life without having grown from loving them.
You don’t ask for all of the obstacles thrown at you in life. Life isn’t easy. But I have become more than I ever thought that I could be and it couldn’t be more worth it.
Holly writes about her daughter’s initial diagnosis in the next post titled “Discovering Autism.”