Does he understand everything?!?

Pardon, I am sorry I don’t understand?”
The doctor paused and said again, “does he understand everything mom. I need to know because I am going to be poking at him and I don’t want him to hit me. If he understands I can explain what I’ll be doing to him.”
Mom looked at the doctor and said in her deep Halifaxian accent, “tell you the truth doctor, I don’t understand everything. I would also like to see a child you can explain things to so much that they don’t fight you when you’re looking in their ears, hitting surgery scars, taking blood; I don’t know no child like that.”

I love that mom; she sure has a way with words. Her words sometimes slap people in the face, back into reality.

I couldn’t believe the doctor asked that, yet, I have heard it before. What does that even mean? There are a lot of things I don’t understand and I am still learning, as are all my clients. Just because they may not be able to anticipate the pain from getting blood taken, doesn’t mean they don’t know you are going to do something that will hurt or understand the pain once they feel it. I don’t know about you, but that means they understand.

I once really pushed a doctor on what he meant by, understanding everything. I also challenged him on his comments of, “the way we understand” and “normal language.” In the end he said, “Because someone may have suffered so much brain damage, we as doctors are taught and shown that the brain no longer learns or strives the way it does in people with no brain damage.”

I still wasn’t convinced. My favourite thing about my job is seeing that the kids I support do understand. They never cease to amaze me by what they know and what they react to. I love when people think they aren’t listening and then they tell me about it later. They also know how to manipulate their world and he people in it. What I mean is, knowing how to tell someone to get them a drink or laughing so they can get some attention or sighing to get a hug. Maybe these things are due to vulnerability, but you tell me the last time you got all those things without verbally asking for it or commanding it.

I know that my clients may not understand or react to things as someone ‘typically developing’ for their age, but it doesn’t mean they don’t understand everything. A better way to pose this question may be to ask exactly what you want to know in that moment. “Will he swing at me if I touch his scar” or “can he hear me” or even “mom, do you mind helping me out so I can explain it to you and him.” I understand doctors just want to come see you and leave; they have a lot of patients to see. But, when they ask questions like this they don’t think twice, but a parent may be hear it over and over again in their mind.

Yes, we need to be honest about what our kids can and can’t do, but when people are automatically negative about in the first sentence, it leaves a bad taste. Especially if that doctor needs a parent to cooperate, I would suggest not offending them.

 DSW

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Hospitals and such

I don’t hate hospitals, but I don’t love them either. Being a sibling, I was at a hospital at least once or twice a month, which has led to some strange likings. I like hospital food, I enjoy reading SAT monitors, I celebrate in secretions making their way out or oxygen levels rising and I secretly feel calm in the midst of chaos and hospital life. That being said, the only time I go a hospital now is because one of my clients are there.

Last Thursday I got a call from a mom that always sends shivers through my spine.

“I am just getting ready to take him to the hospital, I can’t wake him up.” She said with the word’s spitting from her mouth in a worrying speed.

I was with another client and wasn’t able to come straight to her, which I wanted to do. When she was about to tell me what had happened, I told her not to.  I had to get through my shift and then could come to the hospital later that night. As soon as I was finished my shift, I jumped on the streetcar and headed over there. I met her outside and usually strong in these situations, she was worried and tired. She told me what had happened and said, “I think it is his shunt,” which could mean brain surgery.  A shunt is put in the brain of someone with Hydrocephalus or Spina Bifida. It drains the excess fluid from their brains through to their stomachs.

As I walked into the hospital and saw nurses running around, doctors with their teams other parents waiting and them working on my client on the table, I was more and more able to take it all in and be there for mom. As the night went on, she had other family members come down and then leave as it was getting to midnight hours. It never hit me to go home, even though I tons to do the next day.

As we waited for tests, tried to convince hospital staff that he was in pain (even though he was sleeping and couldn’t wake up), pushed the hospital bed up and down halls because we were getting tired of waiting for transport, continually suctioning fluid, talking to doctors and plead with them that something else was wrong, the hours ticked on.  At six in the morning, we were admitted and taken up to our new room.  Once somewhat settled, I once again regurgitated all concerns mom and I shared, hoping they would fall differently on new ears. Mom had given up. She sat back and waited. She said, “It takes them two days to figure out what’s really wrong, or his vital signs drop and then people move.” I still kept trying.

I left at eight that morning and was back for a bit at eleven. When I left for good, I told her to please keep updating me as I don’t know when I could visit again. When she did update me, she told me he had gotten worse. His SAT’s had dropped and they were taking him to into surgery. Not brain, they discovered the problem was abdominal. They had caught him just in time. He was in surgery for two hours. When he came out he was very sick and moved to the ICU. They discovered he had twisted bowel. It is when the intestine is so twisted, it obstructs the bowel allowing nothing through. It is incredibly painful and was why he couldn’t wake himself up. Most people are extremely tired, in immense pain but can tell you of their pain. When my client is in pain, he sleeps and then if this made him increasingly tired, well you see the problem.

After two nights spent in ICU, fevers, and discomfort, he is now happier and stable. There is still minor discomfort, but he is now responsive.

I wouldn’t say hospitals are my favourite place in the world, but I am able to somehow be calm in a stressful and frustrating environment that can unintentionally cause increased stress. This is all so I can support parents and be there for children that I love and mean the world to me.  It is just another strange but wonderful gift from my big brother.

DSW

 

 

 

It’s fine, I don’t care

I tend to work with families for a long time, usually ten years and up. Most the people I support go from childhood to adulthood in that time.

One of my older clients, who is now twenty-two still loves to get together. Now a days, we go out for beers, go to concerts or just hang out. He is in college and has made a good group of friends. He invites them out sometimes. They are all really nice and I love seeing with his friends. He always tells me it makes him feel “normal.”

Something you need to know about some individuals with disabilities. They are involved in less activities than people who are able-bodied, may have a harder time making friends, sometimes live very sedentary lifestyles, not by choice and are the best friends you’ll ever have.

Last night he had a Super Bowl party at his house. I went as a helper to one of the other guys that was there and as a friend. He invited all his friends that he works with in the athletic department. Some said they couldn’t come, others said they’d come later and some said they’d be there. As the night went on, he couldn’t help but be anxious about where people were, along with his family who had made all this food. I was positive as the first person showed up. I had met her before and she was the perfect person to show up. She called some people to see where they were and they said they weren’t coming.

We ate, watched the game and enjoyed each others company. He kept saying, “its fine no else came, I don’t care.” Two more guys showed up towards the end. It was a nice low key party.

I know he was disappointed that only three of the fifteen friends from school came. Sometimes I wonder what he thinks when his friends don’t show up. His friend who also has a disability says he thinks people don’t show up because he is just their friend with a disability. I so bad want to protect all my guys from that, but it is about teaching people and showing my guys that it happens to everyone, not just them.

I once took a small conference with David Hingsburger, and he said something I will never forget. “You will always be more important in the life of someone with a disability than they are in yours.” I think about it all the time and, it is true. I hope l will always be the person that does what she says she is going to do and show up.

Marjo

PROVE IT

I am sitting on a bus, on my way to a school where one of the children I support attends. Why am I going into the school you ask? I will give you some hints; I am picking someone up for an appointment? I am going to visit a class I did a placement in? OR I am meeting with an OT (Occupational Therapist) that doesn’t want to try things or set my client up for success until they prove they can perform?

You got it, the last one. My client’s mother and I would like the child to walk at school using a walker. The walker that this child uses needs the assistance of another person to strap them into it. So first, we need to ask someone to help get the child in and out of the walker. We have heard time and time again that they had tried but walking wasn’t happening at school. I thought, something doesn’t sound right, so I investigated further.

I used to do pick ups once a week from school and one day casually asked, “was the walker used today?” When I was shown the walker that the school was using, it was the wrong one, strike one. Then I was told that due to high tone (uncontrolled stiffness of the muscles in the body), he wasn’t walking. I asked “are the ankle straps being used to help that problem?” “There are no straps on this walker”, strike two. When I said, “I hope the seat is not being used, it causes pinching and really hurts.” They said, “But he need’s it?” Strike three. They just didn’t know and didn’t ask. My client hasn’t even been given a fair chance and it is not up to teachers to prescribe equipment, it is up to the OT. She was my next challenge. If we get the right equipment in place, that’s half he battle.

My client has a walker at home, which they use very well. They have the identical walker at school, just didn’t try it. At home, I did my part to show how well my client uses a walker to hopefully give these adults, some encouragement. Yes, the child has to encourage the adult to receive the praise and recognition. I took a picture of my client using the walker; I marked the picture with diagrams and instructions so they could adjust it properly for my client. I then gave it to the teacher, who then past it on to the OT. I also put my phone number on it, thinking I wouldn’t get a call, the picture must be enough.

When I did get a call, I was a little surprised; I thought I would give them the benefit of the doubt. I thought, “I must be getting a call to say how well the changes worked.” Wrong again, the call was to basically, undermine some of my instructions, be condescending, and prod me about the walking that may or may not, (but really not) be happening at home. The questions I was asked would have made me a total fool if everything I said before hand wasn’t true. I stuck to my guns and advocated for my client. I waited until the insulting questioning had finished and spoke in a calm controlled voice, which is not what I wanted to do.

“That picture was taken two Saturdays ago, my client needs the ankle straps and can’t walk without them, there to be needs little encouragement and my client walks really well for others and myself.”

Then the O.T. went on to ask for a video showing my client walking. Again, I was surprised. I said, “I’ll do what I can.” I then asked when my client was put in the walker. “Gym time, at…” and before the sentence ended, I said, “well I will just come in for that time then. See you Tuesday!”

Even after my commitment, I was still told that my client would not get all the straps that were needed as the walker that was being used didn’t have them. “I won’t switch it until I know it’s going to work.” Yes, that is what I was told. In my head I kept thinking, unfortunately with most children, you won’t know that it is going to work until you try it.

I was furious. I am tired of being told my client’s can’t do something that I know they can or having to prove something to someone’s face before they believe it. I understand that a therapist cannot prescribe something, until they know the patient needs it or can successfully use it. So, I guess what I am talking about here is, where is the belief in our kids? Why is there always this string of condescending questions to a family or caregiver, leaving them feel like you have called them a liar and a fool. I understand unrealistic expectations, but, there is a way to deal with that too. I just wish children who have disabilities were given more of a chance to show their abilities as quickly as they were told, oh he is so cute, she has a great smile or given a pat on the head.

So, here I am now on my way to the school, after this long and tiring stretch. I was greeted by “oh, you came?” Already I had started to speak about why I did come and once again point out that we needed to set the walker up so that it would work for my client. After a back and forth about the way my client should walk, I set it up the way I know it works for them. I put my client in it and that was it, I didn’t need to talk anymore, it was apparent that my client was not a sitting duck as they fifteenth lap.

I wish I could get more of an insight on what therapists go through on the other end. Because I know after the phone conversation, I felt terrible, but I wonder how O.T. felt. I know there is no satisfaction to gain in telling someone their child can’t do something or maybe they have tried many things with a child and the child still couldn’t do it. However, that doesn’t mean every client after that suffers their frustration of the client before. I know it is hard, but every client, even past ones, needs a new set of eyes of positivity, a new set of ears of possibility and new words of encouragement all through the process, even if it isn’t successful in the end.

DSW