The Road to Acceptance - on Autism

     It was our holiday of Sukkot. We had a beautiful Fall day to take the kids to the zoo. The sky looked like something out of a photography magazine. It was one of those days where you stepped outside, took a deep breath and let the fresh air just flow through your body. Hopefully, I thought, this appointment won't take too long and we will still be able to spend time together as a family and go to the zoo. My husband and I, together with our 1-and-a-half year old son, were on our way to the Child Development Unit at Children's Hospital. My thoughts drifted back to Sruly. Why wasn't he talking yet? And there was something else, but I couldn't quite put my finger on it. At his 14 month well-child check up, he appeared to be a typical, sweet, healthy little boy. He had reached all of his milestones on time. physically he had no delays. he smiled and giggled when we acted silly, although I did notice that he didn't respond quite the same as his other brothers did, but i shrugged it off to the fact that we had a very busy home. I didn't spend the same amount of time with him that I did with his other brothers, and every child is different.

"Do you have any concerns?" The pediatrician asked us in his usual fatherly tone.

"Yes," I said, "he's not talking!"

The Dr didn't look too concerned. "Does he have any words?" He asked.

"No! Nothing! Not a single word!"

"Well, I wouldn't be too concerned," he answered. "He has reached the rest of his milestones on time, he's babbling and everything else seems to be normal. Usually if there is a problem, than crawling, walking of something else would be delayed as well and he's right on target. He seems to be just a late bloomer. I wouldn't worry right now."

     I hoped he was right. We both knew I was, and still am a big worrier, so I tried my best to let his words reassure me, but I still left his office feeling that something was not quite right. Sometime later, I couldn't take it any more so we found ourselves in the speech and language unit in Children's Hospital. Here, I thought, someone will finally be able to help us and explain to us why our son isn't talking yet, than we can hopefully fix it and get him to start talking! We walked into the speech pathologists office. I smiled. I wanted to become quick friends with this woman who would soon tell us what the problem was and how to fix it. She responded with an indifferent and serious look.

"What is your main concern about your son?" she asked us.

"Well, he's not talking. He doesn't say anything." I answered

"Will he say mama or dada, or maybe something that resembles that?"

"No!" I said excitedly.

     She raised an eyebrow and took out a questionnaire from a large textbook as if to say, 'well, I know which information we have to go through now.' I was relieved watching her. She really seemed to know where to look and what the problem was. Then she started asking me questions that didn't seem to have anything to do with speech. I became confused and flustered. I found I couldn't give her straight answers.

"Does your son point? Does your son do imaginary play? Does he imitate?"

"Well, no," I explained. "Things are so crazy right now and I haven't had a chance to sit down and teach him those things, but I'm sure he could." Suddenly I felt like an awful mother. What kind of mother doesn't have time for her child, so much so that now he is not doing these basic things?? But what does this have to do with speech?

"He's not talking, he's just not talking! There is nothing else wrong with my son!" I wanted to yell. But her questions were making me uneasy. I found myself defending our son.

"Things are a little stressful right now, the kids are so close together, and his personality is very laid back. He's really happy just doing his own thing," I said.

"Is he aware of his surroundings?"

"Sure," I said, "but he's happy being in his own world. He sees what we are doing, he watches us, but again, he's just happy doing his own thing." Than she sat on the floor next to Sruly and brought out a few toys. She put a tea set in front of him and pretended to drink from a cup and then pretended to have a doll drink from a cup. I thought this was a little advanced for him, and that if I sat down to teach him he could probably catch on. Sruly looked over at the cups, than turned away looking uninterested. I wasn't even sure if he understood what she was doing.

"You see," I explained, "he's aware of his surroundings, he is just happy doing his own thing." But she started to make some notes in her book. I realized that he was supposed to imitated her and join in her imaginary play.

"He could do it if  I taught him," I told her. "I just never sat down to teach him those things." She looked up at me without smiling, waited until I was done, and then finished writing. Ok, she seemed to take that into consideration.

     An hour later our appointment ended. I was emotionally drained. She gave us some numbers and people to call. One was for the Alliance for Infants and Toddlers "to get services." The other was the number to the Child Development Unit in Children's Hospital "to find out why he is not talking." When she said that, she made it sound like something was seriously wrong. Nothing is wrong, I told myself. He is a normal, happy kid. We just have to figure out why he's not talking and fix it.... and I need to spend more time with him.

"Who do I call first?" I asked her.

"Well, you need to contact both of them but make an appointment with Children's as soon as possible."

     So there we were on this beautiful Fall day looking for signs for the Child Development Unit, but all we saw was a plaque with the words: Autism and Developmental Disorders. Well, that's not us, I thought. I asked my husband to ask someone for directions. He asked the first person we saw coming down the hallway.

"Go to the main elevator, up to floor two and when you walk out, make an immediate left and you'll be right there."

We walked over to the main elevator and pressed the button. As we were waiting for the elevator, I noticed the sign. "Autism Pervasive Developmental Disorders and Downs Syndrome, 2nd Floor."

"Is this where they were sending us?" I thought. "There is a mistake, this is not going to help us!"

     We stepped out of the elevator and found we were following the signs for Autism and PDD. I didn't know then what PDD was, but I did know that our son did not have autism and this was not the right place for us. Thirty minutes later, I was finally settled with Sruly in a small office, waiting for the psychologist. This is not where we need to be, I thought. This is a waste of time. Maybe we were just using this office for space. I'm sure they realize we are not using this office for autism. Our son definitely does not have that!

     There was a knock on the door and the psychologist walked in. She smiled. I smiled back, a little tense. "So," she said, "I see you have your hands full. A three and a half year old, a two and a half year old and this little guy,...and another one on the way, I see. How far along are you?"

"About five months," I said.

     We made some small talk about my family and kids. This calmed me down a little. I felt she was getting a good picture of what was going on and there were finally some  questions I could give straight answers to. Then we started talking about Sruly and our concerns for him. I was beginning to think that maybe I had more than just one concern for him. The next hour and 15  minutes was very much like our appointment with the speech pathologist, but more intense. At the end of our appointment she asked me a question which made me come to the conclusion that we were just waisting our time. "Have you ever thought your son has autism?"

"What? No!" I answered firmly. "I do not think our son has autism."

She smiled, wrote down a few things in her notes, than looked up at me and said, "I think your son has autism."

"Well, I don't," I said in a cool tone.

     I was surprised, angry and hurt. Surprised at her diagnosis and her bluntness, angry at her for thinking of such a thing and hurt that we had been sent there in the first place. She gave me a packet of information. She started talking about agencies, websites and support groups that were in the packet, but I let it go in one ear and out the other. I waited until she finished speaking. When she left, I asked the nurse what other pediatric psychologists were in the office. I wanted another opinion. I looked at the list. There were five others. Surely I could find one who really knew her stuff.

     A month later, I was back in the office with a different psychologist. Right away I was comfortable with her. She was gentle and sensitive and listened with a genuine smile about all I had to say, our concerns, how we found our way to her office, what brought us there, and I even told her what I thought about her colleague! Sruly slept though the whole thing. At one point I tried to wake him but he was hysterical and completely beside himself.

"Is he usually like this?" she gently asked.

"Oh no, not at all," I exclaimed. "He is really a very happy child. This isn't normal at all." I managed to get him back to sleep. We looked at each other and suddenly I felt so helpless, so vulnerable. She slowly looked at me and seemed to be choosing her words carefully.

"Well," she said, "let me show you some things to look out for and come back after the baby is born for another evaluation. He is sleeping, so we can't do that much right now." Than quietly she asked, "Are you afraid of a diagnosis?"

I suddenly felt all of the tension, frustration, confusion and anger that I was fighting so hard to keep locked up, just fall all around me. It was all I could do to hold back the tears. She dropped the subject quickly and said, ever so gently, "Well, how about you come back after the baby is born."

I realize now that she was 100 percent sure that our son had autism, but she also saw that I needed to come to terms with it slowly, and for this I will be forever grateful.

     The last few months of my pregnancy, I slowly started to realize that our son might possibly have autism. I cried myself to sleep almost every night. Our therapists from the Alliance for Infants and Toddlers were so great. They would very gently point out how there were some similarities between Sruly and some of the other little children they worked with who do have autism. This I accepted, but just the fact that he had some similarities. Our OT, speech and developmental therapists were so great. They would encourage me, celebrate Sruly's strengths and progress and  very gently point out the similarities in some of his developmental delays with other children on the spectrum. I began asking for books to read. This was probably the best thing I could have done for myself. They recommended three great books, which became my source of encouragement, hope and support. Knowledge was power.

     When I was by myself I cried a lot, but, like any mother, I knew how to quickly pull  myself together. I couldn't show my friends or family that there was anything of real concern here. I would also try to tell myself that our son may have some similarities with other children on the spectrum, but that still did not mean that he also had autism.

     At first, I would talk with one other woman in the community who also had a son with autism. She gave me so much valuable advice. She was my pillar of support and my shoulder to cry on. Now, however, I didn't want to have anything to do with her, out of fear that if I did associate with her, than that would somehow solidify the fact the fact that our son did indeed have autism, so I made sure not to have anything to do with her. Suddenly I found myself with only our therapists to talk to. I felt so alone.

     In February I gave birth to a beautiful, healthy baby girl. Three weeks later my husband was back in the Child Development Unit with our little Sruly. When they came back, I took one look at my husbands face, and I knew. Through a torrent of tears I tried to protest.

"But did you tell her about this new milestone? And what about this one? And what about his improvement with all of the therapists?"

He had. I could fight no more. I knew. I understood. We were starting on a new and unfamiliar path and I was scared. So scared. Our special little Sruly had Autism.

     The road to acceptance can be a long and bumpy road.  I hope that in sharing bits and pieces of our journey it will help smooth out some of those bumps in the road, but in no way do I want to shorten your journey. Embrace it, and dig deep. Take the time that you need to ask questions, re-discover yourself, your family, get rid of guilt and only allow love. You are loved. You are strong. You are wise. You are perfect. You are exactly what your child needs.

-Matana B.

"G-d did not promise days without pain, laughter without sorrow or sun without rain, but He did promise strength for the day, comfort for the tears and light for the way. If G-d brings you to it, He will bring you through it." - unknown