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Thursday, August 26, 2010

First Things First: New Article by Amy Sheridan (That's Me!)




SICK AND TIRED:
 How A Single Mother of a Special Needs Child Deals with Sudden Illness
an article by Amy Sheridan

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 the tales of their children’s maladies.

But, no one ever truly prepares you for the time when YOU get sick. There is no chapter in the Parents Handbook that tells you how to prevent or be ready for the time that you need to be taken care of.  That’s usually not an option. Moms, Dads and caregivers are certainly known for working when they are under the weather, but there may come a time when you have to actually go to the hospital. In most of these 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 for the past few years, not having any major illnesses that would put me down for the count.  This 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 to worry if I was not eating. 

By Saturday, my symptoms had increased significantly. I was eating next to nothing. I tried to keep as much water in my system, but it wouldn’t stay in.  My skin started to tighten around my hands and my feet, a sure 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, and I was in the lunchroom, almost to the point of fainting. I truly wanted to let my body go and pass out, but our kids had autism, ADHD and bipolar disorder and I thought 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.” I knew I was very close to that point, but 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 trauma 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 that 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 P M, 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 was 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 10 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. I then called J.T., who told me it was very okay to call him at 11:45 pm with an emergency. He said that 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 some one he knew and felt comfortable with.

The ambulance arrived and they were so wonderful with the both of us. Nathan was so brave, as 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.  10 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), which my doctor proudly announced that he had never heard of it and had to Google it. I took two days to recuperate, which I was in and out of feeling tired and nauseous. They gave me Ciprofloxacin, a strong antibiotic. One of the side effects is sensitivity to the sun. 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 truly 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. 


13 comments:

  1. first of all, I'm glad you're ok. what a horrible experience for you all. Secondly, you hit on such an important subject. We all need to take better care of ourselves, especially since most of us are the primary caregiver and our make our needs always come last.
    You've reminded me that we need to set up a better safety net around here, with our family so far away (and quite unreliable at that...)
    (I'm going to post the same comment at Hartley's site, but yea on the guest post! Awesome!)
    Alysia

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  2. Also glad you're OK - and that you're committed to making things (relatively) easier should there be a next time. I also think *this* post would be a lovely addition to TPGA, btw. Up to you. ;)

    Decent self-care is a huge issue for parents of kids with special needs, single parenting must magnify it considerably. I was actually slated to write a post for BlogHer about this last week but had to sub out an interview instead, as I was in such an unhealthy overwhelmed space that it would have been hypocritical!

    Thanks for sharing your experience with us, Amy.

    -Shan

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  3. @Squid: We all balance on razor blades most days, and we are thankful that we don't shred ourselves with all the juggling we do! Good for you to recognize that you were overwhelmed with stuff and took some space for yourself. I ran out of the room the other day and whispered to myself, "I am SO OVERSTIMULATED!"

    I would be honored to have this on TPGA! I will send it over to you with all the particulars, if that's cool.

    It still blows my mind that you and I are talking. You are HUGE in my autism echelon, and it's awesome and humbling to have your input and positive vibes. :)

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  4. @Alysia: It's so unusual to me that it took me having this child to realize how horrifically unprepared for emergencies! I thank you for your very supportive comments and I am glad that my post (or any post) can help people or give them a perspective they may not have considered. :)

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  5. Great Post!

    I find it amazing that Nathan coped as well as he did. Sometimes children on the spectrum who struggle with the slightest obstacles seem to get over the more difficult hurdles with ease.

    I'm glad that you're ok and that you've now widened your support network too. Nothing like a good scare to galvanize us into action.

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  6. @Gavin: Nate surprises me with his resilience in places that I think he would freak out in, but he's calm like a Buddha.

    After that episode, I took a hard look at our situation and put many things in place to give me more peace of mind in case there was a repeat performance! :)

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  7. I found this article from Gavin's site. I'm so glad you and your son weathered this crisis so well and that you're on the mend! As I was reading your story, I found myself nodding at the familiarity of it all. I really relate to the whole issue of driving oneself as a mother and the necessity of taking care.

    When my daughter was a baby, I came down with bacterial pneumonia. I didn't know I had pneumonia. I was just coughing a lot (like, constantly, duh) and feeling exhausted, and doggedly going to work, and only went to a doctor after a week of being sick. I figured I'd better get some medicine so that I could take care of my daughter over the weekend. (Taking care of myself wasn't even on the radar.) The next thing I knew, I was on temporary disability, and found out that two people, my age, in my neighborhood, had died in the past month of pneumonia in less time than it had taken me to go to a doctor. That's when I realized that I'd hit a wall at 100 mph and God had let me live to tell the story.

    From that point on, I realized that I had to take care, because if I didn't, my child would be without a mother.

    Sometimes, a crisis is what it takes. Thank God you made it through to tell the story. Many blessings to you!

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  8. Isn't it funny that when you think, "Oh yeah, maybe I should go to the doctor..." is when you're at your absolute worst. I had another episode where I was coughing for 3 weeks and didn't know I had bronchitis and a sinus infection.

    Thank goodness that you did go to the doctor!!! Pneumonia is NO joke and it can still kill you. Parents are always the last ones to take care of themselves, so I am glad that this post may ring a bell for some folks. :)

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  9. Interesting...I never thought of this problem before, esp. with a single mother. I ws trying to think back to when I was you sons age but can't remember if my troubles were specific to an adjustment. I had so many trouble they all blur together in my mind.

    BTW...I didn't know Ciproflaxin caused sun exposure issues. Im sure that's the med I had for my UTI I got (which was the worst pain ever I have ever been in). I have a high pain tolerance.

    I usually put in high regards single mothers but to be a single mother of a special needs is just stellar. I suppose giong to the hospital or doctor is better than letting the thing take it's course. That must be expensive though in the US (Im in Canada).

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  10. I am so impressed with how brave your son was! The ambulance sounds like sensory nightmare all by itself.

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  11. I have, as a carer of two special needs kids spent a lot of time looking after them. For a long time I neglected my own health, and have over the last 12 months have really focused on becoming well, and focused on preventative medicine in order to improve my health. It is something that I guess I haven't really thought about, and I hope it doesn't happen ... thankyou for bringing a very important point to us :-) you are a brave and committed Mom

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  12. @Lori: I think all parents forget to make sure they're okay and I just wanted to remind folks of how important that is. And thank you for your comments about being brave and committed. I feel it comes with the territory, and that I'm just being the best mom I can. :)

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  13. Thank you for the reminder!

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