My oldest son is 21 and has Down Syndrome. He is a child in a man’s body. Unlike most men, he’s verbal about what makes him sad and scared. One of his biggest fears are doctors and needles, and having his blood drawn. Many people share this same fear, but with a normal IQ it is easier to use one’s logic to submit to being poked.
I believe the majority of my son’s fears may stem from seven years ago when he had pneumonia. I was very sick with it myself, so ill that I was bedridden and could not go to work for an entire month. When I was finally on the road to recovery, my son started coming down with it. His lips had turned blue, but coincidentally we’d had grape juice on hand. We thought the grape juice was coloring his lips! But when I noticed his legs looking bluish-colored, we rushed him to the nearest urgent care where he was diagnosed with pneumonia.
They strapped an oxygen mask to his face, rushed him in an ambulance to the children’s hospital and proceeded with tests of all kinds. My son became more and more frightened with the approach of each new person. When they showed up with a needle, he “morphed” into a Power Ranger and prepared to fight off the bad guys. The staff felt threatened and rounded up several strong men who came in to hold my son down. This as you can imagine, only whipped his fear into a frenzy! I can still hear him weeping and pleading, “I’m nice! I’m nice! Don’t hurt me.” I tried to explain to them if they would just give me a few minutes, I could persuade my son to go along with having his blood drawn, but they bullied their way past me and forced him to comply. He ended up staying in the hospital for ten days.
I felt so horrible that he’d had to go through that experience, and it made him even more scared of doctors and needles. He is a compliant young man, responding wonderfully when treated with gentleness and respect. It’s when you rush him into a situation that he panics and lashes out.
As a result of the forced blood drawing, it isn’t possible to simply take him in when it’s time for blood tests. It’s hard to make the doctor’s office understand that they need to have patience. They will get their blood test results but they need to hold onto their horses.
In addition to my son being fearful of needles, he also is not capable of understanding what it means to “fast” for many hours before having his blood drawn. I won’t lock down every morsel of food in our home and put locks on the refrigerator and when he gets hungry, he fixes himself something to eat. I had to come up with a plan. I wracked my brains the first time he needed to have his blood drawn, three years after the pneumonia experience. What I came up with was he and I would stay at a hotel in the area of the hospital, eat dinner in town and then get his blood drawn in the morning.
First we talked to our boy and explained that the doctor needed to do a blood draw. We talked about it, getting him used to the idea that he needed to be still and cooperate like a grownup man (he’s always reminding me, “Mom, I’m a man.”), and we reminded him about the staying at the hotel overnight, and dinner in a restaurant. He seemed to be understanding and accepting. However, one evening he burst into tears sobbing and finally blurted out that the doctor was going to take his blood! After talking with him a bit more (sometimes it is hard to decipher what he is saying) we realized he was terrified that the doctor was going to take ALL of his blood. We were able to reassure him that it would only be some little tubes and he would have plenty of blood left.
You’re probably wondering what this has to do with personal finance? Well, as I’ve been sharing the past week or so, things keep coming up. Money things. Here’s another. One that really can’t be put off or avoided.
My son was supposed to get his blood tested more than a month ago, and his asthma has been acting up to the point where we need to get him to his asthma specialist to see if there is a better medication for him to take. So much has been going on, and I was so exhausted and then was out of town for several days and had to recover from that, and yesterday the doctor’s office called to remind me that they would like to see my son for a follow up visit if he’d had his blood drawn.
Well, I had to tell them we hadn’t gotten it done yet. I asked if it would be possible to get that referral, but they won’t give us a referral until he has his blood drawn and comes back in for a follow up visit.
I hear about people who hope and dream that one day soon all our healthcare will be provided for us by our government. Well, I’ve been on welfare and my son qualifies for state health insurance because he is disabled and it is just not what it’s cracked up to be. It’s a lot nicer when you can just go to the doctor you want to go to. It might cost more money, but at least you have that option. When the government is in charge of your healthcare, you have to go along with what they think is best (i.e. jump through their hoops).
But I digress.
I’ve been feeling better, (I think the vitamin protocol for adrenal fatigue has been helping) and I decided we need to get this done sooner than later. We’ve been explaining to our son that he had to get his blood drawn, and he said he wanted to stay at the same hotel – even pointing it out one day while on the way into town. So we’ve been getting him used to the idea. When I spoke to the doctor’s office the other day, I was fortunate enough to get the nurse on the phone whose son is 5 years old and also has Down Syndrome. I explained to her that we will get this done, we just need them to understand that it takes a bit longer than it might normally take, due to his lack of understanding the need for these tests. I didn’t tell her this, but as far as my son is concerned he would never go to another doctor for the rest of his life, and getting blood drawn is THE last thing he’d ever do. She indicated that she understood that we have to do things differently sometimes for “our” kids, so I hope she was able to pass that on to the doctor.
So the place we are staying is actually a golf resort and the cost for a courtyard room will be $75 for the night. Amazingly, that is cheaper than any of the other hotels in town, at least the hotels where you aren’t risking life and limb to stay in that neighborhood.
Dinner is part of the night out – he requested pizza – and I also thought it would sweeten the deal to go to the movies. Date night out with my youngster! We haven’t done this in a long time. He’s requested that we go see The Dark Knight as he’s a Batman fan.
I’m looking forward to swimming!
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