When anything is wrong with your child, your first instinct is to make it better.
Diagnose the situation, find the answer to the problem and take your child’s pain away. But with autism, that takes quite a lot of doing.
Right after our son Danny celebrated his second birthday he started to have increasingly lengthy and violent tantrums, usually initiated by his extraordinary sensitivity to sound. At the slightest provocation – telephone ring, doorbell, a blow dryer, blender – he would begin to scream, hold his ears and throw himself down on the ground. He was so sensitive to sound that he could hear an airplane coming fifteen seconds before anyone else did. We went right to our pediatrician, who was not alarmed, gave him a routine hearing test, and basically said, “He’s two, you’ve heard of the ‘terrible twos’.” This was 1994, and the classic signs of autism were not as publicized, and therefore not as recognizable, as they are today; but perhaps one could expect a presumably experienced pediatrician to be a little more circumspect.
Then, a few months later, Danny began to wake up screaming two or three times a night. It would go on for hours, and there was nothing my husband and I could do. Since Danny was so sensitive to sound, he began to stop responding to us as a way of protecting himself from the pain. Feeling helpless and exhausted, we brought him to the head of pediatric neurology at the Albert Einstein School of Medicine. The diagnosis was PDDNOS: Pervasive Development Disorder Not Otherwise Specified. We learned that “autism” is an umbrella term for a spectrum disorder. After three more doctor visits, Danny was diagnosed as a high functioning child on the autistic spectrum.
The doctor told us that early intervention in the right setting can have significant results in bridging the developmental gaps. She recommended we take Danny to The Therapeutic Nursery at the JCC on the Palisades in Tenafly, New Jersey. The Therapeutic Nursery is a loving environment designed to help children and their parents cope with the challenge of autism. All the skilled therapists are angels from heaven. We, the parents, learned to model their techniques of dealing with communication and tantrums. When a child is out of control, he or she needs you, the parent, to make them feel safe. So we were taught to sit behind Danny and hold him close with legs and arms wrapped around him, to become his backbone until the tantrum ran its course. When a child throws a tantrum, he throws himself on Mother Earth. I wanted Danny to throw himself on me and let me take care of him. But it was not to play out that way.
I became the “Queen of Denial.” I wouldn’t believe there was something “wrong” with my son. Can you imagine waking up two three times a night, every night, with your child for 12 years!? That’s extreme. Danny’s tantrums could be triggered because of a schedule change, a change in weather, a beloved video ending. I knew I had to change myself, become somehow bigger, larger, stronger, able to envelop him, subdue him, keep him safe; but, instead I went in the opposite direction. The shock of his diagnosis found me shrinking, hiding, disappearing, guilty and over-protective. I would not take any jobs. I would never leave him alone. What if he set the house on fire, ran into the street, cut his finger off with a knife, threw himself down the stairs in a fit and died?
I took Danny to try every therapy known at the time: excising sugar, wheat or gluten from his diet, acupuncture, massage, psychic healers, and trips to Toronto to The Listening Centre for auditory integration. I was told to see what interested him and develop those interests as a way in. For a few years, he obsessively loved daisies, so we planted daisies everywhere. Later his most obsessive interest became pets, especially dogs. Now it seems like we’ve been to every pet store in every state and country and we have a bird, two cats, two dogs, 5 fish and a tortoise.
The deep freeze of fear has to end. Denial doesn’t work. It just detrimentally delays your accepting your child for who he is. I was determined to pick myself up, dust myself off and start all over again.
I started taking boxing lessons. Extreme situations call for extreme measures. The definition of “heart” in boxing is to keep fighting when you have been hurt. I wanted to find strength and courage, and to discover the secret of how to get back up after I’d been knocked down.
One day, as I was speaking to another mother of a disabled child, I said our secret weapon against this disease is to do all we can without any expectation of results. MUMS the word! MUMS: Mothers Unite for Miracles!
And I do have so many miracles to report – and so many miracle workers who made them happen. I will be eternally grateful to all Danny’s therapists at the JCC and at the Devereux Learning Center; to his special education teacher at Tappan Zee Elementary; to his beloved social skills and behavioral specialist for the past decade; to his Applied Behavior Analysis Hebrew teacher, who, for two years, prepared Danny for his bar mitzvah -- yes, his full Bar Mitzvah for a hundred people in a big temple!; to his pediatric neurologist; to his gymnastics instructor; to the founder of Camp Lee Mar; and to his aunts and my three brothers; to our longtime housekeepers; to all his current teachers in the Cove program at Tappan Zee High School; and to the patient who gave Danny his first job – as an assistant dog groomer at The Barking Lot. For all these people, so dedicated to Danny’s well-being and growth, and to at least a dozen more – nannies, therapists, loving friends, devoted teachers – my husband and I can only say bless you for your humanity, love, patience and skill.
Since decision-making is difficult for Danny, choosing “what to be” on Halloween is always an exasperating time and high on the IT (Inciting Tantrum) list. Last year, for the first time, Danny was positive he wanted to be a pirate. We went to a store and picked out a perfect pirate costume - eye patch and attachable parrot included. Danny was excited and I held my breath as we waited to check out, hoping that he wouldn’t change his mind. And he didn’t! We left the store with big smiles on our faces. That is, until we got into the car and he blurted out, “I don’t want to be a pirate! I hate pirates! Pirates are stupid. I want to be a witch!”
My mind races: Did I force this choice on him? Did I push him into it? The store had such a wonderful selection of costumes – did I give him enough time to chose what he really wanted to be? I pull the car over and take several deep breaths. I say, “Danny look at me. I had a happy face two minutes ago and now look at me. Do I look happy?”
He turns his head in my direction and glances over to me. “No, no,” he says.
“That’s right, you are upsetting me, Danny.”
Then he says, “Upsetting is a bad word for U!”
And then in a flash, I say, “What is a good word for U?”
I try to think of a word to prompt him with, but before I can come up with one, Danny says, “United, United is a good word for U!”
This is a miracle.
“Yes!” I say, “United is a perfect word for U!”
“Daddy can be a pirate. I’ll be a witch.”
I burst out in tears. The spell is broken! Two miracles just occurred: there was no tantrum, and Danny saw I was unhappy and realized the cause of it was his behavior!
"Yes, Danny! The opposite of Upset is United! We are United!"
Last summer, Danny and I went to visit his long-time therapist at her home in Maine. It was raining as we drove down a lumpy dirt road on our way to a friend’s farm. Danny was looking intently out the window at the fields and pastures we were passing, and he said quietly, “I can see all of God’s paintings. Thank you God for all the blessings I like.”
And I thank you too, God, for the blessing of my beautiful, innocent son.
