Confronting the Walls
The war was in full swing. I was pregnant with my second little boy and sleep-deprived due to an unyielding Lead Petty Officer who had no clue that being pregnant and a single parent with no relatives within 3,000 miles was hard. I was working twelve-hour rotating shifts—no not six a.m. to six p.m. for a month and then switch to six p.m. to six a.m.; that would be too easy. No, I would work six p.m. to six a.m. for two days, then I would have forty-eight hours off, and then six p.m. to six a.m. for two days and have seventy-two hours off. I had a roommate living with me, but they refused to watch Joey when I was not working since their pay was free food and living quarters. So with six p.m. to six a.m. shifts, I would not have any sleep. I applied for regular hours, which was allowed, but was always told that “if we let you do it, we will have to let everyone,” while women who were pregnant had family in the area and husbands to help were getting approved left and right.
Joey had a problem of being too smart and having no control over his inhibitions. He felt that he had the freedom to come and go from the house whenever he wanted. I would talk to him about how dangerous wandering off was. I would put him in time out, and if I actually caught him going for the door, I would count and give him the choice to stop or be punished. I of course locked all of the doors, but my genius toddler figured them out. I lived in military housing, so any kind of alterations were a big no-no. I was frustrated, exhausted and overwhelmed; I thought I was a terrible mom. All he wanted to do was go to the park next to our house, but he would do it when my back was turned or if I'd accidentally dozed off even for a second. It had gotten to the point that I woke up a six a.m. one morning to a bullhorn announcing that there was a little blond boy found wandering the street alone. Nothing beats chasing a squad car down the street.
Child Protective Services soon became involved, and I was accused of neglect, though they found that I was overly stressed and spread thin. My family was too far away to understand, they thought I was being neglectful too. I was totally alone and my world was falling apart. Until CPS started helping, they spoke with the housing office and the Child Development Center on base; this helped me be able to put chain locks on the front door and separate bolt locks on the sliding glass door as well as get fairly priced childcare on base. On the weekends, I was still relying on the roommate. I was put in remedial counseling, where the doctor found I was suffering from depression. I was also pointed to the WIC program and was taken shopping at Target for items that Joey needed; clothes, a big boy bed, etc.
He was the most expressive and adorable child, was all smiles and cuddles. Throughout the years this characteristic had severely diminished. I thought it may have come from his tumultuous life; we have seldom lived in one place for more than a year, or maybe the fact that his birth father left without a trace when he was four. Before he started preschool, I had never even heard of a condition called Asperger's Syndrome. To my surprise, I learned that Autism was about more than just Dustin Hoffman rambling about K-Mart and counting cards in Las Vegas.
He has always been “marched to the beat of his own drum,” as my mom used to say. I just thought he was especially creative and unique. After a few months of him being enrolled in the Navy Child Development Center, the teachers could see the telltale signs that I was oblivious to. He would talk to himself, do certain motions repetitively, and had a hard time making friends. I was pulled aside one afternoon and the teacher told me of her concerns. I was a single Mom trying to make ends meet as a low ranking enlisted person living in Southern California; luckily enough medical insurance was no issue. Or so I thought. Apparently a psychological diagnosis for a 4 year old is unheard of and laughable in the military. After seven years of enlistment, the birth of Zachariah and being informed that I had to go to a ship by the time Zach was four months old and no options of transferring coasts to be near family; I requested to be separated from the Navy. With support from letters from my family, I received my honorable discharge from the Navy and moved back East. Luckily enough I had a good job waiting.
I took him to three MDs, a Neurologist with an EEG and a child psychologist by the time he was six years old. All of them were telling me that he might have ADD, but his symptoms were too all over the place and there was no possibility he was Autistic. What was wrong with these doctors? By this time Joey had stopped his wandering but had issues adjusting to school. He was friendly, but kids just didn't want to play with him. His baby brother became his best friend, they played together constantly and the house was filled with coos and giggles. Zach especially loved it when Joey would read to him, which taught himself to do by the time he was four. It was still heartbreaking. Because of my work hours, I had them in daycare with a nice Pakistani woman. Joey would come home with more toys that he claimed were given to him. After a few times I made sure to ask the sitter if this was true. She was astounded and thought she had just misplaced the toys. I talked to him about it and punished him, but this problem became one that even now is hard to control. At least he had stopped the wandering.
In the years following, we had moved six times and had seen another two child psychologists, a MD and four IEPs with a pre-diagnosis of “behaviorally disturbed.” My son isn't disturbed he's just wired different. After five years and many attempts, I had finally settled into a stable relationship. I was engaged to Patrick; he loved the boys and was diagnosed with ADHD as a child, so he was more than supportive with getting Joey diagnosed. By this point though, Joey's expressive personality was all but gone and there was a scared, awkward little boy. He did not know how to hold a conversation, talking to him was like talking to a wall. He would still read and play with Zach, but even Zach was moving ahead socially and Joey was miss-stepping his interactions with him. Patrick did not know much about Asperger's but was skeptical about it being the diagnosis. I did some research through my medical provider and found a child psychologist in my area that was willing to see us immediately. After reviewing his IEPs, interviewing us, and having a one on one session with Joey, the doctor thought it was necessary to give him the battery test for ADD, ADHD and ASD (Autism Spectrum Disorder). Within a week, the doctor requested we return for the results, Patrick and I were anxious but knew this doctor was able to see what we did. Joey was officially diagnosed with ASD, she said he was highly functioning and could not officially put on the Asperger's association, but felt that it was the closest fit. It took six years to get the diagnosis, the relief I felt that day made up for all of it. There was a long road ahead, but I knew there were support groups and therapies we could try.
Today, Joey is slowly learning to make friends and be comfortable with who he is. It is a daily battle for him to control his symptoms, but at least now we know how to move forward.