1: This Is What It’s Like

1: This Is What It’s Like

From Chicken Soup for the Soul: Raising Kids on the Spectrum

This Is What It’s Like

We must be willing to get rid of the life we’ve planned so as to have the life that’s waiting for us.

~Joseph Campbell

Earlier this summer at a birthday party, a well-meaning acquaintance asked me an honest question: “What’s it like to be the mom of an autistic child?” She wasn’t being nosy. I happen to like her and know that she was genuinely interested in my experience. But what I saw in her eyes was pity. She even teared up while we were talking.

Those of us with special needs children know that look. I call it “The Look of Tragedy.” Again, she meant no harm. So, I got to thinking: What is it like to have an autistic child? After all, they come in all shapes and varieties. Some of our children will be self-sufficient. Some will live with us or in a group facility for the rest of their lives. I cannot answer that question for everyone. But I can answer for me. And, in that answer, I will likely be speaking for other parents of other very special children.

So, this is what it’s like:

1. To begin with, it’s a kind of death. No matter how much you plan to give your children the freedom to achieve their 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 Candy Land, dance classes, Boy Scouts, sleepovers, team sports, high school graduation, getting married, and watching them have their own children to love. And, though many of our kids with autism will grow up and do just those things, more than half of them won’t. So, you mourn for what might not be. You mourn for what you and they are missing now. And, later, you may mourn for what will never be.

2. Despite the death of the dream child you envisioned, you are deeply in love with the child you have. He still does adorable things you want to share with others. He loves you too, but the rest of world won’t always get to see it. Because when he is away from home, he is not himself. He is not the happy, affectionate child who holds your hand, snuggles, and gazes at you adoringly while pulling your hand to scratch and rub his back. The world won’t get to see him at his most charming and you will see pity in people’s faces. They won’t ever understand the very real, profound joy this child brings into your life every day. Part of being a parent is pride in your children. People won’t see what you are so proud of. And that can be a lonely feeling.

3. Guilt assails you from all directions. You want to throw a beautiful birthday party for your child. But he may not notice. He may not be the least bit interested in the presents, and you fear disappointing the guests. He may struggle to get out of your arms during the party, and you may have to see the sadness just beneath friends’ and family’s smiles. So you consider not having a party. You consider not taking him 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 to try. Therapists want you to spend hours doing activities to help him, but you also have a job, perhaps other children who need you, and you need some downtime on occasion or you’ll go insane. So it seems you can’t ever do enough for him. The guilt is a killer.

4. You live in a constant state of uncertainty about the future. Yes, of course none of us knows our future. But, if you have a typical child, you can be reasonably confident he will have friends, self-sufficiency, and love. You know who to leave things to when you die. But if you have a child with autism, you don’t know how to plan your estate. Do you set up a special needs trust? Do you leave it all now to the one typical child who can use it? Because lifetime care for your autistic child will just drain it. And what if he grows to do well and is able to care for himself? Because you can’t yet guess what will be, every option seems wrong. Uncertainty can affect every part of your life. Should you settle down where you are or should you relocate to a city with more intensive care for his needs? Will he ever talk? Will he ever be toilet trained? You just won’t know until it happens or it doesn’t. And you live with the fear that one day your then-elderly, vulnerable child will lie sick or dying without the comfort of someone who truly loves him. Anxiety runneth over.

5. Spontaneity is a thing of the past. You can’t just get up and go. You have to determine whether there is an escape route from any new activity or location. You have to pack things to distract him if he becomes upset. You have to determine if foods he will eat will be present or if you will need to pack his meal. If he isn’t potty trained, you will worry about where you can take him to change that will afford you both some dignity. Everything must be planned and considered.

6. You begin to grow thicker skin. Because people stare. They stare in disgust, thinking he is simply badly behaved. They stare because they are curious. They stare in horror or pity, because “there but for the grace of God go I.” People stare. And the thing that will come back to haunt you are memories of when you, also, made a judgment about another person in public. Righteous indignation mixes with humility and all you want to do is get out of wherever you are as soon as possible. But you can’t escape everyday life.

7. You grow weary of everyone else’s opinion. Because there are so many of them. There are those who are certain they know how “this” happened. There are those who are certain they know how to “fix” him. There are those who don’t think you do enough. There are those who believe you to be a saint. There are those who believe your child’s very visible difficulties allow them to have an opinion over your finances, his education, your marriage, and even your decision to bear another child or not. Opinions abound, but your patience may not.

8. But mostly it’s like love. A love that you, if you are a parent, can probably imagine. And a love that you can’t imagine if you don’t have a child born with a bulls-eye in a big, bad world. Unconditional doesn’t begin to cover it. Limitless. Earth-moving. Making you question everything you know to be true about God and man. And that kind of love will haunt you every moment of every day. You can see it just behind the eyes of every special needs parent on the planet. We are filled with a love we never could have predicted. We are filled with fears we never could have imagined. We are, quite simply, at capacity most every day. And, yet, when inevitably called for, we find that capacity expands. We aren’t better parents than you. We aren’t saints. And our children aren’t lucky to have us. We are lucky to have them. Because, despite all of the very challenging aspects of having a child with autism, none of us will walk away from this life without having grown — merely from having loved them. Having become more than we thought we could be.

No, this — like many challenges one never asks for — isn’t easy. But, I assure you, these children are worth it.

~Leigh Merryday

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