It was a warm day in March of 1999. I ran into the medical centre with Lukas in tow. I asked the receptionist where I could find the Regional Diagnostic Centre. She looked at me puzzled.
“Where?” she asked.
“The Regional Diagnostic Centre.” I replied, showing her my map.
“Oh my.” She said. “You are a long ways from there.”
Great. I was lost. My husband, Michael, explained the directions to me twice that morning. I was regretting my anti-cell phone stance at this moment. Michael had taken the morning off of work to stay with our infant twins while I took Lukas to the evaluation. It was a 45 minute drive and I left an hour and a half before the appointment so that I would have plenty of time to fill out any new forms. Now I squandered this time. The receptionist asked a custodian who was mopping the entry way if he knew how to get to the right highway.
I ran out of the medical centre and jumped in the car. I sped as fast as I could. It took me almost three months to set up this appointment and I wasn’t going to miss it. I had called the centre in January requesting an appointment. They had told me that they couldn’t fit Lukas in until April. Luckily, they had a cancellation and we were able to get him in much sooner. Autisms Lesson Number 7: One can not just go out and find help. There are wait lists for virtually everything. School districts can squander 90 business days before evaluating. Some medical doctors from DAN[1] and other organizations can have 6-12 month waiting lists for new patients. ABA consultants can have year long waiting lists or may suddenly stop accepting new clients. Some states have three year wait lists for things like medicaid or TEFRA. [2] Now, I know to put my name on any waiting lists, whether or not I intend to use them in the future or not.
I finally found the centre. I held onto Lukas’ hand and walked into the reception area. It was a small room. There was another mother waiting there with her son. The boy looked about eight or nine years old. He was a large boy. They were playing with a video game. I sat down with Lukas and filled out a small form while Lukas flipped through a book. The other boy got up from his video game and walked to the elevators. His mother followed him trying to get him to sit back down again. The elevator door opened. His mother grabbed him to stop him from going in. He kissed the elevator buttons and got back off the elevator.
“I kiss it” he told his mother. They sat back down. Lukas began to play with a maize that was placed on a small table. The mother smiled at me. Suddenly, her son got back up again and walked out the doors into the parking lot. She ran after him. Lukas and I played with the maize. A few moments later the mother came back into the cetnre with her son. You could see how frazzled she was trying to contain this large child. The door to the hallway opened and a short woman in a white coat came out and called out for Luke. I looked up. Did she mean me? The other mother and her son got up and went with this doctor.
A few moments passed. The door opened again and the woman with the coat looked up at me and said, “Lukas Christopher?”
I nodded. She introduced herself as Dr. Crosby. She didn’t seem to pay much attention to Lukas. She led me down a hallway into a large room. It had mats, a ball pit, and swing. She then introduced me to an occupational therapist and a speech therapist. They were to be a part of the evaluation. I sat down near the door while Dr. Crosby, a developmental pediatrician, asked me a few questions. The OT and the ST began playing around with Lukas. Lukas was excited by the room and hopped on the swing. They pushed him around on the swing. He explored various toys and kept going back to the ball pit. He jumped in and the OT threw balls at him.
The Dr. Crosby asked me if he handflapped. I told her that I wasn’t sure. I said that he doesn’t flap his hands around a lot and he doesn’t flick his fingers in front of his face. He does, however, shake and jump up and down when excited by something. She told me that was handflapping. She asked me when he started calling people by name. I told her that he was two when he started intentionally calling me “mommy” but that he was unable to answer the question “what is your name?” until the age of 4. He could identify all his peers at school, all his neighbours, and his relatives but couldn’t answer “who are you?”. She made notes.
The ST and the OT wanted him out of the ball pit to cut with scissors. He came over and sat in the chair but kept looking in the mirror. He wasn’t interested in cutting. He grabbed the scissors and then put them back down. They told him no but he went over to the ball pit. The ST had put the lid back on the pit. He tried pushing it off. He looked over at me and yelled “HEEEEELLLLPPPPP!!”
Dr. Crosby looked at me and smiled and asked if he usually asked for help like that from me. I told her yes. There was a knock at the door. A man came and asked if were to switch rooms or just the adults. Dr. Crosby told him that the adults could. The ST looked up and said that the other child might enjoy this room better. Dr. Crosby then introduced me to the psychologist. She said that we were to go with him now.
“I will take Luke now” he told her.
“Luke?” Dr. Crosby said. “Oh. Lukas. “ She looked at me and said “We have a Luke and a Lukas here today.”
They were evaluating two children at the same time. While Lukas was with the OT and ST, Luke was with the psychologist. They would then have the boys switch rooms.
I went into a small office with Lukas who sat down in a little chair. The OT offered him some juice and cookies. He sat at the small table and drank his Juice and cookies. I talked to the psychologist who asked me a few questions about his gross motor development and interests. Lukas interrupted and asked where the juice was in a mixture of Italian and English. The psychologist looked at me and said “That’s great. Does he always gesture with his hands like that?”
“yeah. Sometimes. Especially when he wants to know where something is.” I replied. I was unsure what was so great about that.
The psychologist asked me what type of TV shows he watched. To be honest, I didn’t allow very many TV shows and we had just moved to the US so Lukas wasn’t familiar with most US TV programming.
“He watches Thomas the Tank Engine. He also watches a little Barney.” I replied.
The psychologist then asked Lukas to join him on the floor to do a few puzzles. He took apart a five piece puzzle and Lukas immediately put it back together again. The psychologist smiled and said “I guess that was too easy.” He asked if Lukas was good with puzzles. I told him that I didn’t really know as Lukas wasn’t very fond of them.
Then another knock at the door came. Dr. Crosby came in. She said that the team members were going to meet and look over some of the forms I had filled out. She asked if we lived close by. She wanted me to take Lukas home and come back. She said it would be easier to talk to me if I did. I told her yes. She then led us to an exam room where she did a short physical exam of Lukas. She looked at his eyes and checked his heart. She then made him lay on on his stomach on the floor. She wanted to pull his arms backwards. He began to yell. “Go away LADY!” She immediately dropped his arms and said “Okay! Okay!” She smiled at me.
She asked who Lukas looked more like. I told her that he looked like me. She said that this was surprising since his father was Italian. She said that she felt he needed a blood test for fragile X. She told me that his big ears, his loose joints, and the fact that he looked so much like me indicated a need for this test. She checked his ears and saw fluid. I told her that he had trouble with ear infections. She shrugged and told me that if he seems sick to take him to his pediatrician again. It didn’t seem to concern her that there was fluid in his ears. She then handed me the prescription for the blood test and told me to come back in two hours.
Lukas and I went to the car. I buckled him in his car seat and we drove the ride home. I wasn’t sure what the morning had produced. They didn’t mention the word Autism. Maybe the other specialists were right. Maybe we were finally in the clear. I drove through the McDonald’s drive thru and got a happy meal for Lukas. I remember looking back in the seat and discovering him sound asleep snoring. Perhaps it is just a little fragile X like this doctor suggested? He would be okay, it was just fragile X.
I whipped into our driveway and hurried a tired Lukas out of the car. I ran into the kitchen. Michael was in the living room.
“well?” Michael asked.
“They didn’t say a word about autism. She said it might be fragile X.”
“huh?” said Michael.
“yeah. She wants me to drive back and she would go over her findings with me.”
I kissed my twins good bye and drove the forty five minutes back to the centre.
Fragile X.
“hmm…” I thought to myself. “that doesn’t sound so bad. At least it isn’t autism.”
When I arrived back at the RDC, I was led into Dr. Crosby’s office. I sat down. She sat in her chair, flipping through a few papers. “well, Lukas is autistic. He qualified under the DSM-IV criteria in the areas of language, social, and behavior.My heart sank. I could feel my eyes start to well up with tears. I fought the urge to cry. I didn’t want to cry.
I didn’t ask her how he qualified. Looking back, I didn’t ask many hard hitting questions. She could have told me that Lukas wasn’t really my child but an alien form from the planet Kabu and I don’t think I would have asked her how she came to that conclusion.
It was a strange moment. To stop myself from crying in front of this woman, I found my mind going elsewhere. I looked at her. I nodded. I could hear her tell me how I needed to set up routines in the house because “he loves his routines” she said with a smile. I was concentrating so much on not having a total breakdown that I didn’t argue with her. Lukas didn’t care about routines. You did not need to have one with him. The only issue he had was transitioning from a favourite activity to a less favoured activity. I don’t know why but I asked her if he could be mainstreamed in school. I was searching for anything to make myself feel better.
“oh. Probably around the second grade or so.” She said. “about half of these kids will have some sort of independence and the other half will need to have long term care.”
She then told me that she would set me up with a social worker.
“A social worker? Why?” I asked. It made no sense to me. A social worker was for parents who abused their children. Lukas didn’t need a social worker.
“oh. She is just there to provide support and help set up services for you.” Dr. Crosby. She then went on to tell me that I needed to call my school district so that they could set up services. She also told me that he needed speech therapy, occupational therapy, and she suggested a developmental preschool. They happen to have one right in the city- in fact, it is affiliated with the diagnostic centre- How convenient! . I told her that it was too far away. She shrugged and told me that he also needed speech therapy to deal with his apraxia. She had me sign a form to start the process of applying for TEFRA. She told me that I needed to sign this form saying that it would cost the sate less money to care for Lukas at home than an institution. She told me that the state was had some old ideas on their forms and not to take it personally. It felt unreal that I was signing a form that even mentioned Lukas and institution in the same place.
During all of this, I kept trying to think of things that would keep me from crying. She then told me that there were some other things parents try like vitamins or something called ABA. She then said that most families find that ABA isn’t for them and they can’t do it because of the time commitment. Then she went back to the fragile X test. She said that it was a genetic condition. Since Lukas looked a lot like me, she felt it was important to test for it. She said he had big ears. I never heard anyone ever say that before. She said that the condition can worsen down the line, just like autism. She also told me that the prognosis wasn’t good for Fragile X children. They get worse as they get older. She also said that if it came back positive, I would have to test all my children, especially my daughter. I should also have my sister tested since she hadn’t had any children yet. It is sometimes funny to look back and realize that she was implying that maybe I was a little autistic myself. This implication would be a common one I would hear from parents over the years. A friend once told me during her child’s evaluation, the father told the diagnostician that his son probably learned a particular annoying habit from him. The diagnostician looked at him and said, “but he is not as high functioning as you.”
What I remember during the fragile X conversation was looking at this woman’s hands. I noticed the ring on her finger. She was married. Here this woman was, telling me who Lukas was and what Lukas needed. I realized that she would probably go home tonight and have dinner with her husband. What would they talk about? Their day? What was on the T.V. that night? Perhaps they would discuss their weekend getaway. What would I talk about with Michael tonight? Our bleak future? The fact that all our children could have a developmental disorder? The fact that my children probably won’t be able to have children either? The fact none of what we thought would be, would come to pass?
She then prattled on about something… I wasn’t quite listening at this point. Then it registered.
“A sibling support group?” I asked, not quite sure I had heard right.
“yes. You need to look into getting your other children into a sibling support group. It is hard to have a weird sibling. They are going to need the support.”
It still wasn’t registering. My five month old twins needed to be in a support group?
My heat was no longer sinking. I sat there nodding at this smiling doctor and felt my heart silently break into a thousand pieces.
She told me that they would write up a report and sent it to me. If I didn’t get it within two weeks, I should call her up. She told me that the social worker would get in contact with me right away. She then got up. It was my signal to leave. She smiled and stuck out her hand and told me goodbye.
I didn’t know it but as I walked out of her office, it would be the last time I would ever see or speak to her again.
I drove home and put on NPR. I tried hard to concentrate on the radio. I looked at the leftover McDonald’s meal in the front seat. I couldn’t touch it. When I arrived home, I walked in the kitchen. The kids were all in the living room. Michael looked at me with a nod.
I shook my head. “She said it was autism. She said we needed to test for Fragile X.”
Michael gave me a hug. I told him that we would talk more tonight. I knew he needed to go to work. He grabbed his bag and left. I stood in the living room trying very hard to not cry. I picked up my daughter Zoë. I looked at Lukas who was playing with his trains. I bent down.
“Hey Lukas. Who’s that?” I asked pointing to the train in his hand .
“JAMES!” replied Lukas.
“What colour is he?” I asked.
Lukas responded. I put Zoë down and ran into the laundry room and wiped my tears. I didn’t want Lukas to see me cry. I spent the next hour running in and out of rooms so that Lukas wouldn’t see me lose control. I put some sweat pants and put sweaters on the kids. I put the twins in the stroller and took everyone outside in the yard. I needed air. Lukas started playing with the trucks in the dirt. I took a hoe and started whacking at the ivy that had overgrown. I spent the next hour whacking at every ivy plant. I pulled it from the side of the house and I pulled it from the bushes. I was sweating. Finally, there was no more ivy to pull. The twins started to cry. They were cold and hungry. Lukas was climbing the trees. I was going to have to go inside.
I pulled myself together and took the kids inside. I stood in the living room rocking my infant son, Lars. There was a knock at the window. Lukas began jumping up and down. “Open the door!” he shouted in Italian “Open the door!” My husband stood at the window with a Thomas the Tank Engine video tape. He came inside and gave it to Lukas who promptly popped it in the VCR. I knew that Michael felt bad.
That night, I decided to write an email to all our family and friends. I just didn’t think that I could tell them over the phone. We had no one close by. All our friends and family were scatters across the U.S. and in two different countries. I sat down and wrote a long email. I searched the Internet for information about fragile X and gave them all the links. I didn’t want to have to explain anything in person.
I sent the email off.
It is interesting the way that different people handle adversity. Michael was trying very hard to be comforting and while I don’t believe that he wanted necessarily to talk about, he did want the comfort of being close by. He would put his arm around me and squeeze me. I wanted to run away. What I really wanted to do was not be me anymore. It felt like I had suddenly stepped into someone elses’ life. This wasn’t me. This wasn’t my life. I wanted to be somewhere else, by myself.
The next morning I still felt numb. I was asleep in my bed and I didn’t want to get out of bed. One of the twins started to cry. I got up. I didn’t want to be the mommy anymore but there was little choice. The world wasn’t going to stop simply because I wanted it to. Michael was already up and ready for work. He called the hospital to find out how to get the fragile X test done. We decided to get it done before our trip to visit friends in Cincinnatti. We had planned a weekend trip and the drive would take most of a day.
The lab told us that it would take about 7 days for the test results to come back. We had the test done and packed up the car. It was a hard weekend. Our friends knew of our situation. Lukas was unhappy. He loved the car ride but the house was full of loud strange Italians. I felt pressure to have him not throw any tantrums. It was a rough weekend. I found myself imaging some blood technician holding Lukas’ blood sample. Were they testing it now?
We drove home two days later. Michael called the laboratory the very next day to find out the results. The lab said that they wouldn’t’ be available for another two days. We were anxious. I found myself holding my twin infants and wondering what their fates would be. The social worker still hadn’t called us. It was as if a bomb exploded upon our lives and we were waiting for the rescue workers to show up- only no one was coming.
My sister Rochelle called. “This is bullshit.” She said. “Mom and I were talking and we decided this is complete bullshit. I am not just trying to make you feel better. This is bullshit. He doesn’t have Fragile X. That doctor was just ordering one of the few tests she knew she could. “
It did make me feel better. Usually false reassurances from well meaning people bother me. What Rochelle said did make sense. Doctors do have a tendency to try things just because they can. It was one of the few bloodtests she could order that would definitively rule out something. There is no blood test for late talking. There is no blood test for autism. Despite the reassurances, I still found myself constantly wondering, constantly worrying.
Finally, two long days passed. Michael called the lab as soon as it opened. He asked for the results. The lab refused to give them. The lab technician told Michael that he should really speak to his doctor about it. Michael refused to give up. He stood firm and was not going to let them brush us off. They finally looked up the results.
The test was negative.
We breathed a sigh of relief. My twins were okay.
We began researching our options again. I called the regional diagnostic centre. I heard that if you could get a recommendation from a physician that ABA was needed, it might make receiving funding easier. I asked to speak to Dr. Crosby. She was unavailable. I left a message for the doctor and called again to speak to the receptionist. I asked where the social worker was. I was given her number. She wasn’t in her office either. I left a message.
Two days passed and the social worker finally called. She told me that she contacted my district for Occupational Therapy services and was sending me forms to fill out for TEFRA. I got back on the phone again. I tried contacting Dr. Crosby to ask her where the report was. I couldn’t get past the receptionist. It had been almost three weeks.
It had been about 8 days since we found out the test results for Fragile X. It was late in the afternoon. The phone rang. I answered.
“yes?”
“Dr. Crosby asked me to call you to tell you that Lukas’ blood test came back negative and that they were still waiting for the other test results.”
“Huh?” I asked. “What test results? We only had a fragile X test done. I didn’t consent to any other tests. What tests are you talking about?”
There was a pause on the other end. “um. Well, I don’t know what tests. This is just the message she gave me.”
“Well, you better find out what she is talking about.” I replied. I was irritated.
I hung the phone up. I can’t believe that the test results were available for so long and that they waited before calling me. They obviously didn’t have a clue what this test was doing to us or what it meant to us.
We filled out the forms for Medicaid and they asked us to include the report or proof of the diagnosis. We still didn’t have the report. We waited and waited. The mailman came and went. I remember I tore into one envelope only to find a bill from the OT. I received another bill for the fragile X test., another bill for the ST and the developmental pediatrician. They certainly found time to fill out their billings. I guess that was more important to them.
I called Dr. Crosby’s office and got an answering machine. I left a message. Hours passed and no one returned my call. I called again. The receptionist said that I could speak to her nurse. She transferred me to the nurse only I got the nurses answering machine. I was angry. This so called doctor handed my child a life sentence and didn’t have the courtesy to call me. I left a nasty message. I told them that I would call them every hour until someone spoke to me and if I didn’t hear from them by 5PM, I would drive down in the morning, park my butt in their office and demand to be acknowledged.
I was transformed. A week ago, I was a mother who would run into different rooms to have a mini cry and was desperately waiting for someone to stop and help me. I was the mom who was way to embarrassed to ask for the “Biggie Fries” at Wendy’s. At this moment, I became a total bitch. No one cared about Lukas but Michael and me. A good friend of mine once said that she would wish for some Autism Fairy to descend down from heaven, wave a magic wand, and give her all the knowledge and answers needed. Unfortunately, Lukas didn’t have an Autism Fairy. He had me.
The nurse called back an hour later. I told the nurse that I didn’t really want to speak to her. I told her that I wanted the report. It had been over five weeks. I wanted that damned report and I wanted it immediately. They were holding up processing of his Medicaid. They were holding up our ability to get services for Michael. She promised to check into it and call me back.
The next day she called and apologized. She said it was held up on someone’s desk waiting for a signature. She told me that it would be mailed and I should receive it in a couple of days. Meanwhile, she would send me a copy of the unsigned report.
Two days later, I received it in the mail. I opened it and read it while standing at the mailbox. I couldn’t believe it. It had nothing in it. The first page was a general history of Lukas that I had provided. One bit described him as good looking and well dressed. I read further on. It had mistakes. They claimed that Lukas didn’t call me “momma” until 4. The report said that they felt he wasn’t retarded. My jaw dropped. I paid an OT, ST, School psychologist, and Developmental pediatrician to tell me that?! I already KNEW that. They said that he was autistic and that he had a “communication disorder” secondary to his autism. They said he was hypotonic. That was it. There was no mention of how they came to their conclusions. There were no test results given. No diagnostic scores. It was a useless piece of paper that said “Lukas has autism.”
What irritated me more was the tone. The mother reports that… this was sprinkled through out the report. It almost sounded as though they didn’t believe me. The mother reports that he had a reaction to the MMR shot but that he completely recovered. What? I never said that he Completely recovered. I said he pulled out of his lethargic behavior a few days afterwards. How does she know he completely recovered? She couldn’t tell if the shot did any harm to his brain or immune system.
How they arrived at the diagnosis I will never know. What specific tests they did, I will never know. They examined him all of an hour. They provided me with nothing but a label. I am still bitter over the experience. Another mom I networked with told me that it wasn’t surprising. “They just diagnose. They don’t treat.” She said.
I disagree with this. If they are going to diagnose patients, then they should be able to tell parents how they reached the diagnosis. They should be able to tell parents what the treatment options are and which treatment options have any studies to back them. Dr. Crosby owed me more than a ten second mention of ABA as “ something that some people claim helps a little but most find unable to do.” ABA is much more than that. She owed me the courtesy of at least answering ONE of the many messages I left for her. She spent more time worrying about my infant twin’s feelings about having an older brother than autism than she did about an effective treatment for Lukas autism.
I don’t fill with anger as much any more over this experience. I think back to that day and all I can do is shake my head. I wonder how many more parents are sitting in her office, receiving a label, and are walking out into the parking lot, waiting for the Autism Fairy to come. I think back to how a year later I received a notice in the mail from them. They wanted to remind me that Lucy needed to come back for her yearly evaluations. They couldn’t even get Lukas’ name or gender right. I threw the notice in the trash. I wouldn’t even take my dog to them.
It would be three years before I would even consider an evaluation of this kind again.
© Antonia Christopher 2002
[1] DAN- DEFEAT AUTISM NOW An organization devoted to the biomedical treatment of autism.
http://www.autism.com/ari/dan.html
[2]Tax Equity Fiscal Responsibility Act is a Medicaid eligibility option that allows states to provide Medicaid to children with disabilities, living at home, who are age 18 and under, regardless of parental income. When a state adopts TEFRA, they must extend Medicaid coverage to all eligible children. Unlike Medicaid Waiver Programs, TEFRA does not have a ceiling on the number people who can be served nor does it provide the special services allowed under a Waiver. Under the TEFRA option the state is required to provide Medicaid services that are available under the state’s Medicaid plan