How to be the Mother of a Special Needs Child: Tale of a Mother

For starters, be extremely excited that you are pregnant. It is your first child and you are going to rock at this! Make sure you only eat organic foods to ensure that your unborn child will not be exposed to any preservatives; you know these are not natural. Drink the safest bottled water available on the market to reduce the amount of mercury your child will ingest. Remember to recycle the bottles – it’s good for the environment, and you’ll be setting a good example for your unborn child. Read every possible book on pregnancy and child education you can find. By the time your child is born, you will be proficient on the subject. Take advantage of the trip to the bookstore and eat a slice of chocolate cake while you’re there, it will not contribute to your child’s nutritional health, but will certainly make you feel good. Do this for approximately eight months.

At the hospital ready to give birth, be sure to preclude the nurses and doctors from forcing any drugs into your system. This will ensure your child will not be born lethargic into a fast-paced world. Push, then push some more. Remember the pain for the rest of your life. Become emotional at your newborn’s first cry. Cry with him. Get mad at the doctor for spanking your son.  Bastard! Forget all about it in a second, there are more important things in your life: you’re now in love with a small human. Realize how exhausted you are. Make sure the name tag on your wrist matches your newborn; do this at least ten times. Take a nap. Wake up in shock at the realization that less than two hours ago you violently ejected a brand new human being into this world. Take a deep breath. Watch your baby sleep. Fall in love all over again. Try to nap again. Fail! It is time to breast-feed. Ouch! It hurts.  Complain in pain about the pain.  Your baby does not know what you are talking about. He does not care either, he is eating.  Do this for about a year.

You are at the end of the diaper era. Time to start going to the bathroom alone. It is time to find new techniques to potty train him. The ones your mother taught you, and you have been using until now, are clearly not working.  Running to the bathroom every time your child screams “pee-pee” is not an option.  Wait and see if they work. When they do, share them with your friends. They will probably come in handy to them. Success. Now you can go to the park, shopping, the movies, and many other places you were unable to enjoy before. Do this for about four or five years. Score!

Potty training went better than expected, but it was over soon. He is now six. Time to freak out – it’s your child’s first day of school. Time to hand him to the teachers, those tightly dressed women who seem to have all the answers. Observe him while he walks away from you with his brand new uniform.  Try not to feel embarrassed that you are the only parent crying, and that your child is the only child happy to be dropped off at school.  Go home, call your mother and tell her about the recent events. Be sure to do so while crying inconsolably. She will pretend to understand, but really feels you are overreacting. Maybe she will say something like “I told you so.” She always does that. Prepare yourself to do this for many years.  Get stalled by the teacher’s constant behavior complaints about your child.

“We like children to be curious and inquisitive,” the teacher says, “but your son seems to take it to extremes,” the teacher adds.

You look puzzled, what could she possibly mean by that? You have noticed certain foibles in your child, but have not thought much about it.  You know he probably gets them from your side of the family. Attend several school meetings in a short period of time.  Realize that it’s now time to take action:

Take your child to a specialist; the pediatrician does not seem to be providing any plausible solutions to the problem. Visit a psychologist. Visit a speech therapist. Visit a neurologist.  Visit a geneticist. Visit a family counselor. Realize that you still don’t have any real answers. It’s time to take other people’s advice.

Although you’re from a different culture, go visit a Cuban “brujo.” Get your child a “despojo,” but this will not help your child. Hastily become afraid of the ritual and take your child home; maybe it’s time for different kind of advice. This time you take your child to the Indian reservation; the shaman is sure to know how to help your child. Observe the beginning of the ritual, and realize that your child’s too young to smoke from that pipe. Thank the shaman for his help and take your child home again.

Recognize you might be running out of good advice.  Time to call some more knowledgeable people. Decide to visit a psychiatrist.  Do this several times.  Get your child evaluated.  Hear the doctor say “this is something related to his psyche.” “His psyche?” you ask. Freak out one more time: your child has autism. Feel clueless. Does that come with fries?  He has a neurodevelopmental disorder, something called Asperger’s Syndrome. Feel more clueless. Perhaps it does not come with fries. Cry. Then cry some more. Hug your child; tell him that you love him, and that everything is going to be okay. Be stunned at the fact that he was not aware that anything was wrong. Love him more. Embrace him again, this time with a mother bear strength squeeze. Notice that he is saying something. Realize you are squeezing him to hard and he wants you to let go. Become conscious of how loud he speaks, you had not noticed this before. Kiss him; then kiss him again. Do this for a couple of years.

Go back to the same bookstore where you ate the chocolate cake while you were pregnant. Buy every single book on Asperger’s Syndrome. Read nonstop. Learn that aside from being like any other child; he’s highly intelligent and has an abnormality in social interaction, which will affect his functioning. Social interaction? Functioning? Sounds just like me. Still, too many variables. Realize that you need to read some more books. Learn that he’s limited by recurring interests and behaviors, and that regardless of your repeating certain rules to him, he will not understand them. Aren’t we all like that? Continue to read for several weeks. Learn that he has a difficult time controlling his thoughts, and will often blurt out comments.  Think that it sounds an awful lot like you.  Feel relief that you did not turn out that bad.  Now you feel close to an expert on the topic.

Prepare to do this for some time. Get interrupted by another phone call from school.

“Ma’am? Yes, your child told a teacher that she was wrong and had no idea what she was talking about?”

Go pick your child up from school, he is getting suspended, again. You are glad you read that book; now you will not be as upset. While driving to school you remind yourself that you have to go back to the bookstore where you purchased all those books. It is time to buy that chocolate cake. Maybe you can come back with your child.

A year of blurting out statements, social embarrassments, and tons of repetition; time to nap.  Wake up to all your silverware and plates perfectly aligned on the kitchen floor. Look puzzled. Although you do not remember reading about it in the books, you imagine it might have something to do with the Asperger’s; perhaps another quirk.

Go to your child’s room to inquire about the event. Find all of his toys aligned on his bedroom floor when you walk in. Notice that he is not there – another puzzled face. Hear the dog barking.  Go to the backyard to investigate. Find your child tying perfectly symmetrical knots on a rope. Observe quietly for a while. Take mental notes. Crushed, you realize that it’s time to go back to the psychiatrist. Maybe he’ll be able to explain this behavior. Make a mental effort not to freak out.

Spend numerous hours at the psychiatrist’s office. Survey the many doctors.  They come in and out of the room hauling your child’s very thick and heavy medical chart. They mumble some medical nonsense here and there. Make an even bigger effort not to freak out. When they leave the room again, doze off on the counter. You are really tired.

Be startled by the psychiatrist slamming the door behind him. Prepare yourself for his words, he looks concerned.

“Your child has an obsessive-compulsive disorder. It’s common in Asperger’s children. He’s also hyperactive. He’ll need medicine so that he can properly function at school,” he says.

Now it is safe to freak out. Cry. Say “no” to the doctor offering some tissues, they’ve been sitting on his desk for quite some time and they have collected a good amount of dust. You have allergies. Continue crying. In the absence of tissues, wipe your nose with the sleeve of your sweater – your son does it all the time and it seems to work wonders for him. Continue to cry, you have gotten good at this. Pay a visit to the pharmacy and buy the medicine. Give it to your child. Do this for about a week.

Apologize to your boss one more time. Make the false promise that it will not happen again. Run out the door – your child got into trouble at school yet again. On the drive there, remind yourself that you need to have a serious conversation with him. Perhaps you should do it at the bookstore while eating chocolate cake. Chocolate fixes everything. Arrive at the school. Go to the main office. Notice everyone’s very angry faces. You are getting used to this.  Notice a big white round lady wearing clothes much too tight for her figure standing at a corner with a folder in her hand. That’s probably the language arts teacher. Your now seven year old son has described her to you as “a really big lady with nothing smart to say.”

Sit down where you are instructed to do so.  Take a deep breath. You pay close attention to everyone trying to tell the story of the events at the same time. It is very loud and confusing. They seem very upset. One more time, your child has told a teacher she is wrong. This time, he threw an intense temper tantrum repeating the words “you don’t understand; I know for a fact that you are wrong!” You ask to speak with your child. He walks in. He looks upset, and you notice that he has been crying. This does not make you happy. You hug him and tell him you want to hear his version of the story.

The big white round lady tries to interrupt. You tell her shut up and to let him speak. “I see where he gets the attitude from,” she says. You know she is out of line, but disregard her comment. Your child explains how the teachers “tried to compare the fossilization of two dinosaurs that ‘I know’ did not live in the same era.” You have absolutely no clue what in the world he is talking about, but have no doubt that your child is right, after all, he is a dinosaur expert.

You inform the parties present you will deal with it at home, and try to leave with your child. He will not leave. He wants to make sure the teacher understands that he was not wrong; must be another Asperger’s thing. Drag your child and tell him to gather proof before firing again. Drive to the public library with your son.  After some research and several very expensive color photocopies, you and your child take the proof to school.  Time for the big, white round lady to apologize to your son. He seems content with the outcome, and you are pleased with this. You go through similar events for about five years.

Although it is the weekend, the sound of metal parts somewhere in the house interrupts your sleep. You wake up to witness your washing machine go through the refurbishing process. You pause, trying not to freak out, and ask your son what he is doing. He goes on to give a very complex explanation of how he is tired of hearing the washing machine make all kinds of noise, so he’s working on making it “more efficient.” You pause again, and try to make an even bigger effort not to freak out. “Trust me mom, I know what I’m doing,” he adds. You decide to give him the benefit of the doubt. After all, he has read and memorized every appliance manual you own. You go back to bed.

After what seemed like a minute, your sleep is once again interrupted by a loud sound; you already know it must be your child. You try to keep your cool but realize it sounded like a small explosion. You jump up from the bed.  It smells like smoke. You run to the laundry room. Apparently, the washer has exploded. Your child is covered in a black residue, and all your laundry and walls are black as well. “They don’t make them like before,” is what your child says in his defense. Now you can freak out. Continue to do this for the next few weeks while you gather money for a new washer.

At work, you find yourself having to beg your boss to let you leave yet again. Although you know he will not understand, you say, “It’s an emergency sir.” But it is irrelevant. Within his seemingly perfect life, he is oblivious to the rest of the world. You have gotten another phone call from school; this time is serious. “Aren’t they all?” you think out loud, trying not to lose your mind. “The police are here. You need to come right away,” the counselor states. It is safe to freak out now.

Without your boss’s permission, you leave work and drive as fast as possible to your son’s school. You arrive and notice two school police patrol cars parked in front of the main gate. Your heart starts beating very fast. Holy shit! You find it hard to take full breaths. Inside, a committee of faculty and staff has the frozen image of fear on their faces. A completely new level of freaking out comes upon you. You are escorted into a room where your child is being held. “Held?” You ask, but they have no chance to answer: a loud howl coming out of your mouth prevents them from speaking.

Although it’s physiologically impossible, you know that the warming sensation you are feeling is blood boiling inside your veins. You find your child on the floor. He has adopted the fetal position under the counselor’s desk. His hands are tied with white plastic bands in front of him. He has a bruise on his right cheek and his eyes are swollen, evidently from crying. You make a super-human attempt not to lash out at everyone in the room. You turn around to find two police officers attempting to explain how they “had to handcuff him, because he was completely out of control, and they feared he was going to hurt himself or others.” ‘Idiots,’ you think. These are the people who are supposed to be protecting us? You demand that he be released from the unnecessary restraints. This is done with incredible speed. You help your distraught child up from the floor. He is shivering and his eyes are bloody red. He has an absent look on his face, and takes a few seconds to recognize you. “You people have to be the most ignorant bunch I have ever had to the displeasure to encounter in my life,” you state with absolute certainty. “He had a seizure, did anyone notice that?” you add with fury.

The unwelcoming committee stares blankly at each other. It was clear that nobody noticed this. You grab your child and try to leave, but are immediately stopped by the police. They explain that you cannot leave because he “needs to be taken to a psychiatric hospital to be evaluated,” because he was “out of control and posed a threat to others,” screaming and punching everyone that tried to get close to him to restrain him.  Overwhelmed with anger and fear, but understanding that you are surrounded by incompetent and ignorant idiots that are unaware of your child’s condition, you do not freak out this time. Instead, you make the decision to disregard law enforcement, grab your child, take him outside and put him in the car, then drive away. Fuck them. That felt good. You are your child’s advocate and protector.

Once home, you realize that neither the visits to the psychiatrist, nor the books on child rearing and Asperger’s were enough to prepare you for what was to come. This is a much more difficult journey than you had anticipated. You pour yourself a large glass of wine, and get ready to smoke a cigarette. Immediately pause; you just remembered you don’t smoke cigarettes. “Perhaps I need something stronger,” you ponder, then laugh. You go to your child’s room, watch him sleep, and wonder how they could think of him as a threat… The world is filled with ignorance. People fear and mistreat what they do not understand.

Educate yourself. Stop being part of the bunch of idiots roaming this earth.

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