Photo description: Codee’s Bitmoji sitting in a picnic basket
As promised, I will answer your second question in this blog.
As with answering the previous question, I still don’t have any band-aids or powdered sugar. So I will be as open and honest as possible with my answer. It is possible that this will be difficult for some to read.
So grab your sandwich or your snacks, put a blanket on the floor and please sit down. This will be a slightly longer blog.
Question: ‘’What should carers take into account? Especially with you.”
Most important to me is contact and communication. I can’t see enough to read body language or facial expressions. Also I can’t see if you point to something. Introduce yourself calmly, because I will learn to recognize you by the sound of your voice. I also read your emotions and facial expressions by listening to your voice. I bet I can hear in your voice any concerns you may have about the previous client.
If you come in restless or even bouncing and full of nervousness because you are going to provide care to me for the first time, I will get just as restless and I start bouncing just as hard. That’s going to clash. I’d rather you say you’re nervous. Because that’s often me with a stranger. If we can be open and honest with each other about it, we’ll be fine.
I often only wake up when the nurses come into my room. Then I can’t say anything to you for the first few minutes, because my brain and nervous system are not cooperating to make my mouth move. So it makes little sense to ask questions. I can sign, but then you have to stand next to my bed so that I can see that you are looking at me and of course you have to be able to use sign language.
My care plan is full of instructions regarding my morning routine and how it works, but that doesn’t allow you to quickly read it while you’re still outside in the car. I came up with a solution for this together with my EVV’er. As soon as a nurse starts asking questions, I often hand them an old android tablet. It contains short lists of the things we should do during the morning routine. I will talk more about this in another blog.
If I’m in the bathroom while you’re still looking for something in the bedroom, don’t start asking questions from that room, I can’t hear you.
Have you ever worked with someone who has hypermobility? This also requires some attention when you are washing or showering your client. Ask which joints are the most sensitive and more likely to move out of place. With me that is my left shoulder and you should absolutely not lean on that. It hurts and if it slides out, you can take me to the hospital. For some people, all you have to do is lift one arm a little too quickly, and their elbow or wrist joint will pop out. Be aware of that.
Some people with hypermobility also have Raynaud’s phenomenon. . This makes fingers, toes and even the nose very cold and sometimes blue if they have been in a cold environment for too long. This is painful and it is difficult to get everything warm again. So be careful with the water temperature when washing and showering. A lukewarm shower on a hot day seems like a good idea. But not in people who have Raynoud’s Phenomenon.
I can’t think of anything else that specifically applies to me. If you are at the Care and Welfare level or even higher, everything you have learned in your education is enough to take care of me.
I have learned that I have to remember something myself when I meet a new healthcare professional, and that has to do with my autistic brain and my short-term memory. It is because of this that I get nervous when meeting someone new… changes are and remain difficult for me. Then I sometimes have trouble expressing my needs, or I become more forgetful. So forgetful that I even forgot to explain this to the community care team during the intake interview. It is not obvious when I am struggling with this, which is why I had a neuropsychological examination a few years ago so that I can prove this on paper. But then again, if I forget to show these papers, sometimes communicating is a real challenge.
So do your best to get to know your clients as well as possible and keep asking questions. How they react to certain things often has a reason and that is not always immediately apparent.
I am aware that that my blogs reach more than only community care workers. There are readers from all kinds of different care sectors.
I am here to share my experiences with community care. But if you have CRS, you still end up meeting people from many different sectors. Because sometimes you need help from a physiotherapist. You have to visit your doctor several times a year. They prescribe medicines and then you end up at the pharmacy and if you are really ill, you sometimes take an ambulance ride.
I could also write about this. Because I certainly have built up those experiences. But I thought you would find it more interesting to read from other CRS warriors.
That is why I asked people from my own Facebook group – for people with CRS, their loved ones and carers – a question. They are people who come from everywhere. Think America, India and even the Philippines.
I told them I wanted to share their answers with you. On the condition that I wouldn’t mention their names. Below you can read their answers to the following question.
What do you think people in the healthcare sector should know about CRS?
Honestly, I’d like them to know what CRS is. After all those experiences I’ve been through, my expectations are very low. – CRS Warrior from Canada.
In my experience, my doctors don’t even want to recognize CRS. They do, however, find the limitations that I have suffered as a result of CRS interesting. But they have no idea how CRS will affect me as I get older. – CRS Warrior from America.
I would like the medical community to recognize that we are not hypochondriacs and that we have numerous unusual symptoms. Sometimes I’m looked at as if I’m crazy… – CRS Warrior from America.
Listen carefully and accept our child as a human being. – Parents of a CRS Warrior from India.
I would like them to keep in mind that sometimes we have multiple disabilities. like me for example, i am both hearing and visually impaired so they need to make sure i understand important information. Don’t make it difficult. Just ask me to repeat the information they give me. When I come to an appointment, I have to explain this every time. It makes me crazy. I also wish more research was done on the disease. Because of this, more detailed documents about our multiple problems could exist. For example, about the fact that some have larger organs. We may also have some abnormalities that cause unusual pain. Once I had a burning sensation on my scalp and later we discovered that I had some blood vessels that were pinched or flattened. If more documents exist on CRS, complex issues such as this may be resolved more quickly. – CRS Warrior from America.
I hope you can get something useful or instructive from these answers. I want to thank you for giving me the opportunity to share all of this. It is truly an honour!
We will get back on the train next week. We’re going to take a ride where I want to tell you about something that means a lot to me. It is about an experience with an intern that I will never forget. So eat your snacks and sandwiches quickly and get ready to get back on the train.
Until the next blog!
CRS Life 