Advice for Scared Parents

Travels with Jake

According to The Autism Society of America, autism is on the rise and now strikes once in every 500 births in America. (www.autism-society.org). When my son Jacob was born in 1990, it was only occurring once in 30,000 births. I believe part of the reason for the increase is better diagnosing, and I think it will eventually be discovered that a common food additive is triggering the rest. I say a common food addictive because nothing else could reach every pregnant woman in the country across all social and economic lines. Meanwhile, what do we do?

My son, Jacob, is fifteen now. He didn’t speak till he was five. He was bottle fed exclusively and in diapers till he was six. Today, he attends regular school with a full time aide. His vocabulary is commensurate with his peer group. Only within the past ten months has he begun to converse with people. He is learning to listen, take turns talking and stay on topic. When he wants to stop conversing, instead of simply turning his back and walking away, he has learned to say, “Please excuse me, I want to go now", before he turns and walks away. He still only eats ten foods. If he adds a new one, which is rare, he drops one off the list. Considering where he started, he has done great. College and gainful employment is in his future, although it is unlikely he will drive, manage a checkbook, or live independently.

By societies standards, he is rude and inappropriate in almost every setting owing to his shocking bluntness. He simply doesn’t lie, ever. There is no guile in him. Since he has no sense of cause and effect, he can’t anticipate how you will react to his comments, so he never gives your feelings a second thought. When Grandma shows him a picture of herself on her wedding day and says, “I was a pretty girl back then, huh, Jake?” he simply hands the picture back and flatly says, “No. You weren't pretty.”, while I look for a door to hide behind....

In spite of all the hardship of raising him, he is the joy of my life. I’ve laughed as often as I’ve cried when I see the world as he does. So, I thought I could share a few pointers on parenting an autistic for those struggling out there.

#1] Educate yourself. Read all you can. Be responsible to make yourself your most reliable expert.

#2] Educate your extended family and friends and anyone who will be in contact with your child on a regular basis about his/ her autistic behaviors. When my friends would visit me when Jake was young, he’d hide under my chair. If they reached to touch him, he’d bite them. Many thought I should discipline him for biting. I had to educate them that he bit out of fear. He wouldn’t tolerate being touched, not even by me. You can’t apply standard discipline to a child who cannot comprehend that he did something wrong. You can only discipline a child to their level of understanding.

#3] If possible, dedicate a room or area to your child’s comfort.
First, make it safe according to their specific needs. My son would spin endlessly for hours on end. I taped padding around anything with corners. I only kept essential furniture in the room.

Second, ‘Zen’ the room. Reduce all sources of stimulation; remove pictures on the wall, stereos, decorative knickknacks, et. al. Make the room like a Zen retreat, as peaceful and soothing as possible. Autistics can’t dismiss stimuli. They are taking in everything all the time, which you find out when you realize they can detect the most minute change in their environment. When I put a small plant on the windowsill in our ‘Jake Zone’, he noticed instantly and that plant became an airborne missile landing on the floor of the adjoining kitchen, narrowly missing his sister’s head.

#4] Take advantage of the help that works for YOU. You can’t do this alone. You probably have a relationship, a home, other children, a job, and other obligations pulling at you. Look into what is available in your area, explore your options. If the best Speech Therapist for autistics is 20 miles from your home and you need two appointments a week, and there’s a good Speech Therapist 2 miles from home, go to the closer one and work together to hone a program for your child. You do not have to climb every mountain! You are your child’s strength, you are their voice until they can speak. If you exhaust yourself, you compromise their best advocate and caregiver.

#5] If possible, one parent stays home. If you can remotely manage it, let one parent stay home. If you are a single parent, maybe you can work from home. If there is any way at all, make it so. No one will understand and be able to anticipate your child’s needs better than you. No one will notice slight changes in behavior that could be a springboard to better understanding. Your child will probably will not do well in daycare. Too much stimulation will drive them further inward. Your child probably can’t make his/her needs known to the daycare provider. As a toddler, my son would have nothing to do with other children and struck them if the came near. Lastly, to alert you, not to alarm you, your child wouldn’t be able to tell you if they were mistreated or neglected. No one else can tolerate your child’s idiosyncratic behaviors like you. No one else is a better source of safety, stability and love than you.

#6] Laugh, Pray, Chat. Laugh at funny things they do. By the time I got back from the bathroom one day, my then five year old son had dumped out and spread a five pound bag of sugar all over the table in the ‘Jake Zone’. I watched as he carefully set up the Star Wars figures from the beginning of episode five, which begins on a snow covered planet. He only spoke jargon, but he played with the figures and pretended they were talking to each other - that was a first! If I were his daycare provider, I would’ve vacuumed up the sugar and punished him. But I was an at home parent, and for the price of a five pound bag of sugar, my autistic boy was learning, through play, that people face each other and take turns when talking. Even though it was all gibberish, he was using inflection and changing the pitch of his voice for each character. He was learning about communication! At the end of the play, I put the ‘snow’ in a ziplock bag and showed him the cabinet I would store it in. Thereafter, whenever Luke needed to be rescued on the snow planet, Jake would point to the cabinet and I would give him the bag. I vacuumed up any sugar that went off the table and the bag got smaller and smaller till it was eventually forgotten.

Pray. It hurts nothing and could help everything, even if it serves only to quiet your mind for a short time, pray. Be grateful for all you’ve got and ask for all you need. I can only tell you that Providence has put the right people in my life at the right time when I have asked for help with my son.

Chat. Call your friends and chat so you don’t go nuts! Tell them how tough it is and let them offer you tea and sympathy. You need it. The caring of friends gets you through the next day. When someone (not a friend), and it will happen, infers that you are milking your child’s condition for your own secondary emotional gain, try my response and say it loud enough to embarrass them: “Absolutely. I need all the ‘atta girls’ I can get right now to get through this. Do YOU have a special needs child?” They will always answer ‘no’ because no one with a special needs child would accuse you of overstating how hard it is to consistently mete out all the extra love and care they need.

#7] Don’t fight the detours, you’ll get there just the same. Don’t get upset if you have to cancel his/her physical therapy appointment at the last minute because someone else in the family is having a crisis that needs you now. Don’t get upset if you can’t get them to give up their security blanket just because the ‘expert’ says it’s time to. I bet the ‘expert’ who said it doesn’t have an autistic child. It has to be your child’s decision to surrender favorite objects or change behaviors. We create the matrix that encourages them to choose a better thing, and having made a better choice, we reward the behavior which tells them it’s okay to try new things and the best choices will get rewarded. It’s called successive approximation. Reward all the little steps that steer them to the desired goals.

Have a careplan in place for your child, but don’t get crazy when the train jumps the track, you’ll get back on track as soon as you can. Being a single parent for most of my son’s life, both my kids slept with me when they were small until I could afford a bed for each of them. Money was tight and I was blowing most of it on food and rent.....To this day, on stormy nights, which frighten him, or when he feels sick, I still wake to find Jake in my bed. I used to get scared that I had harmed him in someway that he’s still so insecure at fifteen. When I tried to forbid him from sleeping with me, he would become tearfully anxious and agitated.

But one night, I looked again. There, in my bed was a chronologically fifteen year old boy, emotionally about eleven, clutching his stuffed stegosaurus named ‘Spike’, that he has slept with since he was two. Along with his four foot stuffed green python named, “No feet”, and a small pink monkey named, “Pinky”. All four of them come to my bed for comfort and security sometimes. So when I become aware that there’s a zoo in my bed, I get my pillow and move to the couch. It happens less and less as time goes by and I know eventually, Jake, Spike, No feet and Pinky will all feel secure enough, even when they are under the weather, to stay in their own bed every night.


Have confidence in your parenting. You love this baby and nothing you will do will cause irreparable harm to your child. You will adjust and tweak your parenting abilities as you go. Just like a sailor constantly reading the wind and the water and making adjustments for the pitch and yar, you will read your child and know what you have to do next. I knew when my son was hungry, tired, anxious, sick. I had to know because he couldn’t tell me. It wasn't intuition, it was that I was keenly attuned to him through thousands of hours of observation. I learned to KNOW with dead reckoning what he needed. I learned to have confidence that I did know and still do know, better than anyone on the planet, exactly what MY son needs. Have I predicated every decision in my life on his needs? Yes, I have. And you will too. You can’t avoid it, so just go with it.

Jake has exhibited savant behavior with regard to paleontology. At age ten, his uncle and I took him to the Museum of Natural History in New York. He correctly identified every dinosaur skeleton before the guide did. He plans to study paleontology in Montana where the bones are. When he informed me of his plans, he said, "You’ll like Montana Mom.”

I said, “Hey, I don’t want to go to Montana!”

To which he responded, “You have to come, I don’t know where they sell eggo waffles.”

Well, I do love to travel. And I’ve never been to Montana.... And a man can’t be separated from his waffles. So I guess our travels will continue!