My story is different than yours, as it should be. Every parent who discovers their child has a disability whether it be Autism, Dyslexia, Down Syndrome, Cerebral Palsy, or any other disability, is going to have a different and personal response to how they take the news. Mine was different than I expected because I thought my years of experience had prepared me to take the news, but it didn't, and slowly, I've begun to understand why.
Before getting married and having my two children, I was a Special Education Teacher. I had grown up with a disabled sister and niece and believed I was completely open to all people with disabilities. Working as a Special Education Teacher had also given me new insight as to what makes a person "normal" or "typical" and I felt that had broadened my view of life as well. But getting the news that my son had Autism was harder for me to take than I had expected.
The first time I suspected something was wrong was actually right when he was born. He came seven weeks early and that instantly had me on the lookout for any concerns or delays. He spent three weeks in the NICU (Neo-natal Intensive Care Unit) and I stayed diligently close to my first child. When he came home at the end of those three weeks, I started to examine him more closely for the first time, with less worry and fear of injuring him. I discovered something that alarmed me, but that the doctor told me not to worry about. My son didn't respond to his name or to my voice. The doctor's told me that I should wait until he reached his gestational age before I continued to worry further, and that in the state we lived in (CA), he could be assessed as early as six months if I still felt he needed to be looked at by then.
By the time he was six months old we had moved out of state to Idaho, so my husband could complete his education. I continued to be worried about his development and mentioned something to a Woman Infant Children (WIC) counselor about his delays in voice recognition and eye contact. She informed me that in the state of Idaho he could be tested at 18 months, should I still have concerns by then. So, I went on with my life and continued to try my best to help my son reach his developmental milestones of rolling over, crawling, walking, eating, and talking.
By the time he was 18 months old, we were in Arizona, pursuing yet another career plan of my husband. I was working and distracted by the complications of going through a bad pregnancy. Eventually I noticed that my son's speech was undoubtedly delayed, and I started to make a list of the words he could say. After taking him in to the doctor for his 18 month checkup I asked about his speech and language delay. The doctor first asked how many words he could say, and I responded about 50 words. The doctor then asked my son to say some of them. With each utterance the doctor looked at me curiously for confirmation of what my son was saying. It was the first time anyone told me that I was the only person who could understand my son. At the end of the appointment I asked the doctor if my son could be assessed since he was now 18 months old. The doctor responded that in the state of Arizona my son had to be 2 years old to be assessed, and that if I was still concerned by then, that I should bring him back in and they would start the process of getting him assessed.
I went home, as I did with each appointment, and updated my husband with the progress of our son. As usual he responded very briefly and expressed that he thought I should let it go and not worry so much. This upset me and when my husband asked me to move again just a few months later, right before our son turned 2, I began to wonder if there was some kind of a pattern in our moving. We always moved before I could get our son assessed.
The next move took my little family back to CA, but now we had a son and a daughter. We were homeless for a period of time, living with family, until we settled in an apartment together for four months. During that time, I took my children in for checkups since both were behaving oddly. I was concerned that the moving had affected them too much, and the homelessness. There also were severe problems in my marriage and I wondered if that kind of stress could affect a child's development in the manner that my children were behaving.
The end result was that my daughter and son were assessed, and my daughter was considered to be somewhat delayed but not anything to worry about. However, my son was entered into early intervention programs. His speech and language was delayed, he had night terrors, he would barely eat, and he would consistently hit himself in the head whenever he seemed to be under stress or was frustrated that he could not quite get the right words out. He also had started to head butt me in an inconsistent manner, and so I could not find the trigger for his behavior.
The early interventions almost immediately helped my son begin to make progress. The Speech Therapist and the tutor helped open my eyes to several great ideas about how to help my son expand his language. They also gave hints and suggestions about how to create a routine that would get my son invested in eating. One story that was shared with me that helped me gain perspective, was that a child with similar needs had a very set routine about eating a certain meal. Apparently this other child wanted to see the food prepared, put into a certain bowl, warmed up in the microwave for 30 seconds, put into the freezer for 8 seconds, and then this other child would sit at the table and eat the food with a specific spoon, and only if the meal was at a set temperature he wanted. If the food was the wrong temperature, the entire routine had to be restarted since the child could not tolerate seeing the food re-warmed up and then cooled off again.
Hearing this story was when I first began to understand that whatever my son had going on (no one would suggest a diagnosis yet) was going to take a lot more effort than I understood how to overcome. I knew right then I had a lot to learn and that the process might become a long and difficult one to cope with. But no matter what, I knew that the key to my sons success right then, and now, was for me to accept him, whatever I found out. No matter what the outcome would be, or what demands would be placed on me, I knew the key to my success from that point forward would be unconditional love.
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