After a few phone calls, I called another center which was located on a site of a school for disabled children. It was an eerie feeling to be there. We didn’t belong there. Our little girl was very bright. So why did we come here? The offices had an institutional feeling. This was for those other people’s kids. All the thoughts were rushing through my mind but I knew I had to find out what was wrong with Kat.
We, my husband and I with Kat, met a team of neurologist, speech pathologist and a social worker. She was scared of the tools the neurologist would bring to her. She was poked and measured by the neurologist at her total discomfort. The speech pathologist performed tests with her using objects blocks, etc. which Kat ignored. The social worker, on the other hand, asked us a bunch of personal questions, which I had no value for but had to pay for since you could only get an evaluation by a team not individuals.
Afterwards, we received a package of tests that Kat would have to go through. One of these tests was an MRI. This test was equivelent to hell for Kat. First of all, Kat did not like to put anything that was not white in her mouth unless it was trash of course. She had to drink a cup of the medication that was supposed to put her to sleep. She spit half of her medicine all over the room and would not lie down on the table they provided. Instead of getting sleepy she could not sit still. After four hours we convinced them that she was reacting to this stuff and it made her more hyperactive than ever. They gave her another stronger medicine that finally either from exhaustion or from screaming so much, or the combo, she finally gave in and fell asleep. I was so glad my husband was there to help me deal with her for the duration of this spectacle. I was not used to dealing with disapproving looks from other patients and nurses. I could hear their thoughts loud and clear “What a spoiled kid,” “Doesn’t she know how to handle the kid?” and “Some people should not have children.”
Nevertheless, we both were exhausted by the time Kat fell asleep. But the fun was just beginning. They put her on a stretcher and wheeled her to the MRI room. The room was freezing so her little body was cold as well. The room was huge with this one huge piece of equipment standing like a forbidding monster ready to take its’ next sacrificed victim. I watched her in horror, holding hands with Tom, as the equipment would swallow her lifeless, pale little body and let it out, in and and out. An even more horrifying chill would pass through my whole being. What if it’s cancer or a tumor in her brain that is causing all this. That would explain her pulling out her hair and other idiosyncracies. The combination of the chilling thoughts and the freezing vision of the room and my little girl strapped helpless to the machine will stay with me forever…
The day of the results finally arrived. We were nervous but excited, hopful that we finally will know what the problem is and how we can fix it! My husband and I were asked to be present. I think we both went prepared for the worst. But once I heard the doctor say it was not cancer I felt such a relief that I did not hear as much afterwards.
“ Aphasia with autism spectrum disorder…” my brain exclaimed ”not a tumor!, not a tumor!” as the Doctor continued.”…. Mrs. H. should quit her job, stay home with Kat and keep her happy, there is nothing we can do…” He did recommend a speech therapist.
This guy was off the wall, must stay home!, I just got my masters finally and I am going to be a house wife… I don’t think so … He didn’t know us. We can fix anything once we know what’s broken… So what is this aphasia thing?…How do we fix it?”
We left the place and went to a diner to exchange our thoughts. Little did we know then that this was going to be a tradition. We read the report but could not understand what it meant. We never heard of autism, aphasia, or some of the other words. So we knew we had to learn and research this stuff. But the research did not help us much more.
Our next step was to visit a speech therapist. She asked more questions, tried unsuccessfully playing with Kat, and recommended sign language. We tried to explain to her that “Kat is not deaf, she can hear very selectively”, but the woman insisted that sign language was the only way to go and gave us a bill and recommendation to see her once a week for some more astronomical fees.
We did not plan for these expenses. My husband just changed jobs. But worst of all, I could not fathom Kat using sign language. Who would she talk to? No one else speaks sign language. They only use it in “those schools” for retarded people. Kat is not retarded. She is smart as a whip. She just can’t talk! If she could only talk, she would show them! She can tell which video is which by looking at the label and she can’t read, no one taught her. She can expertly take all her clothes off in seconds, undo zippers, buttons, snaps, and remove shoes and socks. So we refused to go for sign language and found another speech therapist.
Danuta - Kat's Mom, December 2, 2006
