Autism: whose rock are you?
Several days ago Matt came to give me my morning hug and upon seeing him a red flag went up. Matt looked . . . “peekéd.” Peekéd is an expression that was used by my grandmother many years ago to describe a pale, not quite well, state of health. I noticed his eyes were puffy and his face a bit swollen and pale in conjunction with his usual morning smile. My immediate summation was that Matt had either been crying or was ill. “Are you O.K.?” I inquired gently. “I’m fine”– his usual reply, even when sick.
“You don’t look like you feel very well . . .” I went on. I felt his forehead and it was warm. “Your eyes are puffy. Does your face hurt?” I continued as I pressed gently on his face above his sinuses. “Oh?” he said quizzically. Matt was trying to figure out what I wanted at the same time I was trying to figure out what was wrong with him. Matt showed no response to my pressing his sinuses. I looked in his throat and saw it to be red and his tonsils slightly swollen. Nothing severe, thank goodness. There was just enough redness to signal to me that Matt was indeed fighting some nasty little virus (how dare a virus have the audacity to come into our home!).
For the next few days Matt took a decongestant and took it easy. The decongestant messed with his sleep patterns and he was up for more hours than usual, but he acted O.K., and he ate fine. I’m the one that was on edge. I felt myself under a constant state of alert. You see, Matt’s autism has always prevented him from distinguishing pain and illness from normal functioning. I can’t say with any certainty that he can’t feel pain, but he definitely has trouble determining whether his pain or discomfort is worth mentioning.
When Matt was two and a half years old he was hit by a swing on the chin which resulted in a deep cut that bled terribly. It upset Matt that a red liquid was emerging on his face, but he never showed a response to the actual pain he must have had. That was the first sign of his sensory problems. Since then, he has had pneumonia and never coughed, ear infections where the only indicator was an occasional swipe across the ear with his hand (as if to brush it away), a urinary tract infection where the only symptom was the smell as well as other illness and injuries. For each occurrence I have always relied on investigation and deductive reasoning and it’s always a bit scary.
When he was about 8 years old I noticed he had an occasional cough and a low grade fever. In addition, he lost his appetite and slept more. Matt – in my mind – was very sick. I reasoned that anything that caused him to deviate from his normal routine had to be serious. The doctor did a quick listen to his chest and declared it the flu and sent us home. I was not convinced. I sensed something was terribly wrong – I just knew it. When we left his office, instead of going home, we went directly to another doctor’s office. This doctor decided to do an x-ray – mostly at my insistence. The x-ray showed one of Matt’s lungs to be completely full, and the other nearly full. Matt had a severe case of double pneumonia for which he was immediately admitted to the hospital, put on IVs and antibiotics and breathing treatments. While we were there his first doctor stopped in to apologize. He had just learned a valuable lesson about listening to a mother of an autistic child.
Memories of other instances have been popping up all day. This latest virus has me wondering how I will ever allow Matt to live on his own. How can he when he could get severely sick and not tell a soul? How could I sleep at night wondering how he is and knowing that if I call him and ask he will always say, “I’m fine?” Planning his life requires taking everything I know about Matt and working on every area of concern in a way he can respond to. This is no easy task. I know I must really work with Matt to express himself, especially when it comes to both pain and illness. In addition, I have to constantly try to foresee as many obstacles as possible in order to address them early. The scary part is . . . what if I fail?
I know I am responsible for this very special human being for the rest of my life and I must admit there are days when I have to wonder if I am up to it. Am I doing right by my son? Am I giving him what he needs? Am I doing everything I need to? There’s nothing like the sick feeling of failure when it comes to your child (don’t all parents have days like that?). The sudden fear for my son, the panic of “what if” consumed my thoughts for most of the day. Thank goodness it has passed and I am feeling stronger again. Life goes on. You can be sure I have now added “telling someone you’re sick” to the list of goals Matt must reach before he can live on his own. Make no mistake, Matt will live independently someday. But realize too, that achieving all the goals is an awesome and sometimes overwhelming task. I have my times of weakness – days when I feel so incompetent as his caretaker, his friend, and his teacher. Days when I need some gentle support to get me through.
It’s a hard road, being the parent of an autistic child, but one I will gladly travel with my son, Matt and my husband, Tom. Only the parents of an autistic child know – really know – what it is like. On those scary, panic stricken days, support is everything. So this week I have a request. If you know a parent of an autistic child, (if your reading this then you probably do) give them some praise and possibly a shoulder to cry on. Let them know that you are aware that what they face is a life-long journey and that the stress can sometimes be overwhelming. Help them stay on their road and focused toward the future. I get my support from Tom - he's my rock (thank you, sweetheart).
The big question is, whose rock are you?
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