I never wanted to write this book. I can’t write this book, it hurts too much. But I have to because this book wasn’t there when I needed it. It’s not a human-interest story or a self-help book or an instruction manual on how to raise an autistic child. It’s simply a well-thought out laundry list of everything I did to help my daughter be the best person she could become and I did it in the dark because this book wasn’t there for me.
My daughter, Carrie, was diagnosed almost seven years ago. With everything. PDD-NOS, Autism Spectrum Disorder, Static Encephalopathy, Bipolar Disorder, and in the words of one specialist, Full-Blown Autism. I didn’t even know that last one was a real medical condition.
Like most parents in my situation, I dove in head first in trying to find out everything I could about autism and how it was going to affect my child. Unfortunately, more often than not the books I could find were only about theories on autism or current research or how bad the future could be for my child or the different ways that autism affects boys. None of that was helpful or reassuring. I didn’t need to know the scientific history of autism, I needed to know how to potty train my daughter. I needed to know how to teach her to talk or what to do when the day finally came that she had to go to school or had a crush on a boy or got her period. Was she ever going to have a job, a checking account, and a car payment? All the research that was being done to make discoveries down the road didn’t help me with my daughter’s struggles today.
This book doesn’t contain any medical information or scientifically-proven research because I am not a doctor or a researcher. And God bless those people who are sweating it out in laboratories and working themselves to death day-after-20-hour-workday to learn all they can for autistic people. I am, however, a teacher and a mother who has been there, so this book is simply the strategies that I learned from working with my autistic child. Basically, it’s the book I prayed for but never found when I was trying to reach through the cloud that surrounded my daughter in order to pull her out into my world. Some of it might help other children, but not all of it will fit all kids with autism. Of course, some of it might even help some of the struggles that parents with “normal” children face.
Chapter 1: Get Over It
It’s time for tough love: your child is autistic. Stop saying he’s “a little bit autistic,” or my favorite, “he’s somewhere on the spectrum.” Guess what? We’re all somewhere on the spectrum! We’re at the “not autistic” end! And please stop referring to your other children or your autistic child’s classmates with cute little labels like “neuro-typical.” They’re normal. Your autistic child is not. I didn’t say that was bad and I’m not suggesting that you can call your kid names or introduce him as Rain Man, but it is a statistical fact that most of the kids in the world are not like your autistic child, so by the freaking definition of the word, your child is not normal. There, I said it. Now we can move on.
And that’s great advice for any family with any child who has any difference about them. Accept it and move on. I would rip off my own arm and eat it raw if it would make my child normal, but the sad fact is it won’t. So why waste time and tears over the child I thought she was going to be instead of marveling at the beautiful creature she already is? It used to hurt a great deal that she isn’t going to have the future I planned for her every time I rubbed the rambunctious bump in my pregnant tummy, but I had the funeral for that dream and have moved on. The pain gets less and less every single time she smiles at me or tells me she loves me.
Here is a great exercise. Your first assignment is to find somewhere alone, whether it’s your backyard or your closet, maybe your garage. Go there right now. I want you to raise your arms high over your head and scream, “WHY?” as loudly as you can, over and over until you’re hoarse. Then I want you to wait for the answer.
Guess what? You’re not getting one. And even if by some miracle God sent the little naked cherubs down with a banner that explained it all, that told you every single thought process behind why you have to have a child with special needs, it is not going to change a thing. You have my permission to waste your life and your happiness crying out for answers, because that means there will just be more room on the happy bus for the rest of us.
Chapter 3: Talking
Carrie hated to speak. To me, to herself, to the dog, to anyone. I swear to you this entire book happened because one day I snapped and it became a breakthrough. We were in the car and once again she barked a one-word demand at me: “Music.” I had already been through a full day’s worth of headaches at work and a sadly-smiling day care teacher who told me that Carrie had cried in the corner for most of the afternoon because another child had a birthday celebration in class and Carrie is afraid of the birthday song. Carrie demanded that I turn on the car stereo and I lost it. I held up my open hand where she could see it from her car seat and yelled, “You know how to speak! You will say five words to me or you will have nothing!” She was startled into silence for just a minute, then said, “I want music now please.” The whole concept for everything I’m telling you was born because I refused to let her do her own thing. This is my world, and the rest of my world doesn’t care if you’re autistic.
When Carrie first began working with a Speech Therapist in Early Intervention, the therapist introduced sign language. It’s apparently a very typical tool that therapists use, because I soon realized all of Carrie’s therapists would reinforce the sign language that the speech therapist was teaching her. I signed up for classes at the university up the road, bought sign language books and DVDs, tried to teach my husband some of the basic signs so he would know if Carrie was trying to express her needs. You name it, I did it.
Carrie hated sign language. She hated to be touched and the best way to teach a child sign language is to hold their hands and help them make the signs, while praising their efforts. The second I reached out to grab Carrie’s little hands, she was done with me.
The real paradox was every time she finally got over the emotional or social hurdle that was keeping her from interacting with me, just long enough to let me know she wanted something, I would grab her hands and make her sign for it. So she would leave. She finally noticed I wasn’t functional furniture long enough to look at me and I drove her away by doing something over and over that quite possibly caused her a physical sensation of pain.
When I finally spoke to her Speech Therapist about it to let her know that we were not continuing the sign language effort at home, I think she was very disappointed in me. I think her disappointment stemmed from the fact the sign language has been extremely helpful to a lot of kids and families. It just didn’t work for Carrie.
Once I had convinced myself that Carrie wasn’t interested, I was able to justify that thought by realizing that teaching Carrie sign language was going to take a lot of time and study. I happen to be fluently bilingual, so I know what kind of effort goes into learning an entirely new language. If I was going to put that kind of effort into teaching Carrie to communicate, I’d much rather teach her to speak!
I do not mean to sound like I’m condemning parents whose children are not verbal. There are many autistic kids who have found that sign language or communication boards, even picture cards, are the only window they can successfully and happily use to communicate. Other specialists and educators wanted Carrie to try the little laminated pictures so she could just point to what she wanted. That just wasn’t enough for me, but more importantly, it wasn’t enough for Carrie.
This all goes back to my earlier explanation that the world isn’t set up for your child to succeed just yet. If you adopt the attitude that your child can’t do any better than THIS, then that’s exactly what will happen.
I do not pretend for a minute that Carrie is going to grow up to be a NASA physicist. Am I a bad mother for thinking that she won’t be? Of course not. I’m being realistic. But at the same time, if I don’t do all I can to make her engage in the behaviors that the rest of the world uses, things like verbal and written skills, I just made the decision once and for all that she will never be a NASA physicist. Heck, if she won’t speak because I didn’t do all I could to make her, I just slammed the door on a lot of jobs. I made the decision for her that she will not enjoy life to the fullest. Even the kid at McDonald’s has to be able to speak to say, “Do you want fries with that?” and look how badly our society denigrates that kid’s occupation as some kind of metaphor for loser. He can talk, so he was already one step ahead of Carrie.
Chapter 5: Clothing
Many autistic children, Carrie included, would run naked 24/7 if they were allowed to do so. And I guess if it was socially acceptable, I would wear the same pair of jeans and the same comfortable white T-shirt every single day. The difference between an autistic person and me is that very term: socially acceptable. Whereas I understand that people will stop speaking to me if I wear the same clothes every day and I will probably lose my job when I start to smell, one of the hallmarks of autism is a lack of understanding for what is socially acceptable. That’s why you have to step in and stop your child from being the walking poster child for all that is socially wrong. First, by making him wear clothes.
I was at a support group get-together once and one family in particular had a twelve-year-old son who could not stand clothes. The moment he exited their vehicle at our cookout, he stripped naked right where he was standing. And his parents said nothing, suddenly too engrossed in the chips and dip to notice that their junior high school-aged child was letting it all hang it out in front of a lot of people.
Maybe it’s because we were supposed to be people who “understood,” or people who knew what they were going through. In reality, what they were going through was a complete lack of respect, for their son’s privacy or for the people around them. My two small daughters were treated to a peep show of a half-way physically grown young man, and this young man was now on display because, “he just hates to wear clothes.” If this were not a situation where autism was involved, if a normal child was actually stripped of his clothes and left standing naked in front of gawking strangers, the parents would be in jail. Why is this young man’s dignity any less relevant just because he’s the one who took the clothes off?
He removed all of his clothes, as he proceeded to do every time I saw this young man, because the clothes his parents chose for him were a sensory hell. Instead of letting him choose his own clothes, or at the very least forcing the clothes back on him every time he took them off, they were basically saying to his face, “This is all you are capable of.”
Unfortunately, every time someone who is unschooled in autism comes in contact with a naked preteen, that person will think of that naked child every single time she comes across any person with autism. When people meet my daughter and hear about her diagnosis, their minds will return to the time they witnessed a random autistic child shoving handfuls of food into his mouth in the food court in the mall because the mother was too busy or too weary to stop him, or the child smashing his forehead on the pavement and screaming while the parent stood by doing nothing. These people will judge all autistic people, my daughter included, on the way you allow your autistic child to behave. I would like to ask you not to do that to my child.
Chapter 11: Vaccines
Yup, I was going to have to face the music on this one sooner or later. Practically every parent of an autistic child that you will ever meet will want your opinion on the vaccines. If you’re unfamiliar with this topic as it relates to autism, then you’re in good company, because so are the doctors who first published the study back some twenty-five-odd years ago.
Apparently, a study was published in a prestigious medical journal that linked vaccines to autism, specifically, the preservatives used in the MMR vaccine and a few others. The preservative back then was made from a mercury-based derivative. And there was lots of anecdotal evidence in the study. For example, Japan had the lowest industrialized-world autism rates and they don’t give a single vaccine until age two (let’s ignore the idea that the Japanese just might eat more mercury than anyone else on the planet since they are an island nation whose diet is almost exclusively oceanic fish). Plus, looking at the more commonly understood idea of autism, which is children who are perfectly normal until they reach toddlerhood and then regress, many parents dutifully took their children to get vaccines and then basically felt like they came home with a completely different baby.
I have told you before, I am not a doctor. But logically, all of those autistic children were also normal and then they ate their first French fries. Or rode on a merry-go-round. Or visited their grandparents in Florida. So what caused the autism? Was it the trip to Florida?
I do not blame the medical community for this one, at least not entirely. I do not believe for a minute that some doctor in England thought to himself, “I know how we can ruin a lot of people’s lives by getting their babies killed from completely preventable diseases! Let’s convince them that shots are evil!” More likely, I think a completely desperate and befuddled medical community was trying to give parents hope and closure.
I will admit to you openly that my daughter’s diagnosis came at such an early age and that ALL of her current success is due to the fact that her doctor made a mistake. Her pediatrician had obviously read the same journal articles and subscribed to the same school of thought about the vaccines as those researchers. When I went to the appointment to get her 12-month shots, he would not give them to her because she wasn’t reaching her milestones. He was afraid of vaccinating her if there were already “issues.” The fact that he was wrong about the shots is irrelevant; his “concern” led us to get on the ball with more testing and Early Intervention, and for that I say he saved her life.
Picture it this way: let’s pretend the vaccine-theory had already been debunked and he gave her the shots. Would it have made her MORE autistic? Of course not. Would we have floated along blissfully unaware that there was a problem for another year or so? Probably. And she would not have gotten the focused, concentrated help she needed. We would have wasted an entire year of her life, and even typing those words right now has made my eyes fill with tears and my breath catch in my throat. The ONLY treatment for autism available right now is INTENSE therapy, which is why I’ve told you already I don’t have time to play around with hurting your feelings. And neither do you.
Chapter 15: Going On Vacation
I’m going to take you on a vacation. You don’t know it, of course, and you have no concept of what a vacation is. So picture it. I’m going to get you out of bed very early one morning, throw you in the car without your usual breakfast, march you at lightning speed through a busy airport where you had to stand without any shoes on for a long time. Then I’m going to put you on an airplane that makes noise and vibrates non-stop and doesn’t have your Legos on it. Hours later, I’m going to load you into a car to go to a hotel that has the wrong kind of blanket, none of your stuffed animals, and the television channels aren’t the right numbers any more. We’re going to walk all day long through museums or galleries or you and I are going to lounge beside a swimming pool for hours, even though I know you despise the smell and feel of sunscreen. After several days of inexplicably not getting to eat in your favorite chair and watch your three favorite DVDs, after days of not having any idea where you are and why your books are nowhere in sight, we will finally repeat the loud vibrating voyage and go home. And dammit, you’d better enjoy every minute of it.
Do you want to continue to take memorable family vacations? Then you’re going to have to be the one to adapt, not your autistic child. When we flew to Washington, D.C., Carrie’s suitcase had no clothes in it, only toys, books, movies, and all of her favorite foods. Yes, part of the fun of vacationing is doing something different, but autistic kids as a general rule suck at enjoying new things. To you and me, vacationing somewhere far away means trying new foods, taking in new sights. To someone who struggles with object permanence, vacation means you just threw away all of my clothes, toys, books, games, pets, classmates, my grandparents, and my house, only to drop me in a hotel suite that is far smaller than our house, and I will never see any of my familiar, comforting objects again.
Carrie now LOVES to go new places. She is thrilled to death to stay in a hotel and especially loves camping trips. Because every time I plan something like this, I prepare her in advance. I also take into account all of the things that both of my girls love. They both love swimming, so when you’re online booking a hotel, choose one with a pool (an indoor pool if it’s cold outside). Ann thinks room service is the height of elegance, so I make sure to look for a hotel that will let us choose that as an option one night for dinner. You can even select your specific camping spot at a campground online these days, so I always choose one close enough to the bathroom building that I can watch the girls walk over there, but I also make sure it’s close enough to the playground that Carrie can go play with her sister while I get the fire going.
This may also seem like common sense, but when you think of a vacation, are you only thinking of how fun it would be for you to sit in a chaise lounge with a great book you’ve been dying to read? That’s what I think of when I think of luxury! Kids hate just sitting. You dragged them halfway across the world to sit. One of the best trips I’ve ever taken with my kids was to go to a week-long convention close to the beach. I brought a teenaged babysitter for the week, just so I knew my girls would do more than just sit. While I was in workshops for literally just a few hours a day, this wonderful sitter took them to the hotel pool, but also took them to lunch at the fast food place across the street, the Carnivale museum down the block, the hands-on kids’ science museum, and more. They were constantly on the go. I would have to call every time I was headed back to our hotel room, just to make sure they were going to be there!
I attended an autism education conference once and one speaker in particular made a profound proclamation: “Autism is not a death sentence, but it is a life sentence.”
When he said that, I shattered just a little bit. Up until that point, it had never really occurred to me that Carrie was never going to leave home, that I would never retire to my little cottage in the woods, venturing out to spend time with my grandchildren or to travel. My dreams of spending my golden years bouncing around America in my rusty old RV fizzled like a leaky balloon. Instead, I was going to be the eighty-five-year-old woman dragging her fifty-five year old daughter through Walmart once a week to buy our groceries. Hopefully we wouldn’t be eating cat food.
So I don’t let myself think about tomorrow, or next year, or when I’m eighty-five. If I do, I’ll miss out on the amazing things that are happening today. Today my daughter told me she loves me. Today she tried to pick out her own clothes. Today she came home and told me something she did at school without me having to play Twenty Questions. It’s not huge, but for today, it’s enough.
I have always imagined the metaphor of Carrie’s life being similar to her hanging from a cliff. It feels as though I’m holding her hand as she dangles above certain death and the only thing that will keep her from falling is my ability to hang on. If I’m too weak and I let go, she’s gone. And she’s not able to do her part to help me. She’s looking at my struggling face and smiling, but the whole time I’m screaming at her to hold on, to climb up, to try to reach the branch above her. And she won’t, because she doesn’t know how. It’s up to me to save her.
That’s a very unfair, unrealistic expectation for myself. But I’m her mom and I’m going to do all I can. I am strong enough to hold on to her for as long as it takes. She will not slip out of my hands, and the harder she tries to fall because it’s the easy thing to do, the more I’m going to dig my nails in and hold on to her. That’s all I can ask of myself. And you can do the same for your child.
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