Tuesday, August 31, 2010

When A Single Mother of a Special Needs Child Is Suddenly Ill

Asperger Ninja

As parents, we always worry if our children get sick. That’s part of our job. We are prepared before they are even born, having been told countless stories by our parents, friends who have children ,and sometimes, complete strangers who are more than happy to spin tales of their children’s maladies.

But no one ever truly prepares you for when you get sick. There is no chapter in the Parents Handbook on how to prevent or be ready when you need to be taken care of. That’s usually not an option. Moms, dads, and caregivers are known for working when under the weather, but there may come a time when you have to actually go to the hospital. In most incidents, the other parent will take care of the child (or children) while the other parent is ill. But what if you don’t have that choice?

I’m a single mother of my son, Nathan, who has Asperger’s. When I was married, and a trip to the ER was necessary, my husband did the honors and took care of our child while I convalesced. I had been lucky, not having any major illnesses for the past few years. One, however, came quite out of nowhere.

It was July 2009. I was working for the ARC in their summer camp that year. I remember getting into a minor fender bender on July 12th, which was a Sunday. I am a very good driver, so this really threw me for a loop. I recall feeling a little fuzzy in the head before the accident, so I wondered if maybe I was tired.

The next week, on Wednesday, I started getting some lower GI problems. It was hot that summer, and our rooms at the camp had no air conditioning, so this did not surprise me. I am sensitive to high temperatures, so my body normally reacts this way. I knew to keep hydrated and not worry if I was not eating. 

By Saturday, my symptoms had increased significantly. I was eating next to nothing. I tried to keep water in my system, but it wouldn’t stay. My skin started to tighten around my hands and my feet, a  sign of dehydration. I checked my temperature, but I showed no signs of fever, which would indicate infection. I couldn’t sleep at night, as I was making almost hourly trips to the bathroom. 

Monday rolled around and I was barely conscious at camp. It was a really hot day, I was in the lunchroom, and I truly wanted to pass out -- but our kids had autism, ADHD and bipolar disorder and  it probably wasn’t a good idea for them to experience me in that state.

My co-counselor said, “Amy, you look awful.” 

I said, “Yeah, I feel pretty awful.” 

He said, “You should go to the hospital.” 

Then it hit me. Who would take care of Nathan? Who would get him? Who would be able to explain to him what happened, without him getting upset? That thought was too much for me to handle, so I asked my co-counselor to get me a Popsicle from the kitchen. I promised if I didn’t perk up after eating two Popsicles that I would go to the hospital -- secretly hoping I wouldn’t have to go.

I rallied enough to make it through that day and to go to work on Tuesday, the 21st.  I still was feeling lousy, but had a lot more energy than I had, which I took as a sign that maybe I was finally past this illness. Later that night, around 11 PM, I was woken up from a sound sleep by the most intense abdominal pain I had ever experienced. It felt like someone had taken a knife and had split my stomach open and the contents were burning my insides.  I was terrified.  

I went through my mental list of people I could call. Nathan’s father was over 70 miles away, as were his grandfather and grandmother. Both of my sisters were quite far from where we live. I thought of my best friend, J.T., who only lived ten miles away. I was worried that I would wake him up, but I was also starting to panic, as I needed to know someone was going to take care of Nathan.

I called 911, trying not to cry while I was talking to them. Then I called J.T., who told me it was very okay to call him at 11:45 PM with an emergency. He said he would meet us at the hospital in 30 minutes. I can’t even describe how much relief that gave me, knowing that Nathan would be with someone he knew and felt comfortable with.

The ambulance arrived and they were wonderful with both of us. Nathan was so brave; he held my hand as I was wincing in pain. I kept my face as calm as possible, so that he didn’t know how much distress I was truly having. Ten minutes after we arrived, J.T. showed up and I just started weeping. Tears fell down my face as he hugged me and said, “Its okay, Amy. I’m here.”

I discovered that I had been exposed to fresh water bacteria (by drinking water from a system with older pipes). My doctor proudly announced that he had never heard of it and had to Google it. I took two days to recuperate, in and out of feeling tired and nauseous. They gave me Ciprofloxacin, a strong antibiotic with the side effect of sun sensitivity. I spent two weeks sympathizing with vampires, feeling like my flesh was burning off during daylight hours.

This experience was one I definitely do not want to have happen in the future. I think if I had been a bit more proactive and had gone to my doctor earlier, even without signs of infection, he would have treated me and I wouldn’t have had to go to the ER. I think as parents we neglect ourselves and focus all of our energies on our children, which is very common. However, if we do not take care of ourselves, we are not the only ones we put in jeopardy. 

Special needs parents have to go above and beyond what is necessary to ensure their good health and well being. Since then, I have made sure that I have more than one person I can call if there is an emergency. I have also taken better care of myself, so that I will minimize the possibility of a repeat performance. I learned my lesson in the hardest way, but have taken steps to ensure that I will be more prepared if it ever (hopefully not!) happens again.