This was now the second bout with pneumonia we were facing. It was not as bad as the first, we had caught it sooner and were very hopeful about it. We were beginning to make plans to take my mother home after this. After extensive conversations with Medicare, in which I finally got on the list to be able to speak to them on my mother's behalf, I discovered that if she was out of hospital and nursing home for 60 days, and after that she had a three day or more hospital stay, she would be eligible for another 100 days of rehab, which she would NOW need because all of the progress we had made before was for naught.
She was now as weak as she was before. We would have to start all over again.
After a week, the doctors announced they were sending her back to the home. Our plan was to transition her home at the end of the month, February 28. We were paid up at the home until then.
But, something was wrong. My brother and I were visiting her and saying to ourselves and each other that she was not herself, that something else was going on, that maybe the lungs were better but she was still sick. She looked terrible.
I called a meeting with the doctors and made them come in.
"I know you're thinking of sending her back but she is still very ill. Something is wrong."
They told me her lungs were better and she could continue antibiotics at the home and she was fine. I shook my head.
"If you do this, it will be a mistake."
They said the plan was still tomorrow. That evening she began vomiting and having terrible diarrhea. They were forced to reconsider.
After testing, they discovered she had a Clostridium difficile bacterial infection. Better known as C diff. The antibiotics had killed all the good bacteria which kept that bad bacteria under control. She was immediately moved into ICU and began the second half of her battle. C diff is incredibly difficult to get rid of. She was sick for weeks. Finally in mid March, they began to say she could be released.
I made arrangements for home health care to come for 8 hours a day. Also arranged for Physical, Speech and Occupational therapy to visit. The most we could get on insurance was once a week. I knew it would not be enough.
It was very rough when she first came home, she had two more trips to the hospital because she was not quite well. We had some changes on the food and we had some adjustments on medication. My daughter Cassandra really stepped up to taking care of her grandmother and we soon realized we were going to need 24 hour nursing help. I cannot begin to tell you the financial devastation of that.
After several ups and downs though, we got a routine and discovered some really amazing caretakers who were so caring and kind and became just part of the family at some point. We had two favorite live in caretakers.
But the PT situation was not going to get any better. Truth be told, my mother got very good at manipulating her way out of exercises many days and for some reason, the PT guy, as great as he was refused to even try to stand her up, which pissed me off to no end. He said we would get there but HE NEVER DID. After three months, he had still not even tried to get her in a standing position.
We finally got a regular primary care doctor and what I have to say about him is that he is okay but nothing more. He does the bare minimum if that. But he is more or less there. We tried a number of things. One was Mobile Docs who come to the house. The doc that came was okay but when we called to ask a question, the reception couldn't be bothered to page doctors or make any effort. Worst medical office ever!
Then began the struggle to get her Medicare Part B. That is a whole other story. She didn't have it but the previous nursing home said she did and then when they found out she didn't, long after she left, they sent a huge bill. I hate them.
The whole time I tried to talk to Medicare but they refused to talk to me even when my mother said they could, made us miss the deadline for enrolling her and I had to go down to the social security office and beg them to find some way to get her enrolled.
So now, we enter limbo. Waiting out the sixty days. And after that we have to hope she needs to go back in the hospital.
WHAT SADIST MAKES UP THESE RULES? Why can't we just get the medical care we need? Why are we running a clock all the time? Running with limits.
While she was in the hospital, they did a pet scan which revealed a possible tumor in her saliva gland. They were convinced this was cancer. THIS was the cancer they were looking for. This was it. They biopsied it. It was benign. They were almost disappointed. Still convinced that she had cancer, still watching those nodules in her lungs that now had not grown a centimeter in 9 months, they told us we needed to see a pulmonologist.
But the wait time was 2 months.
I asked them "If you had cancer, would you want to wait two months?"
They called back and postponed it further. I yelled. They told me the doctor wanted it this way. I asked them "Do you really believe in waiting this long to diagnose cancer?"
They would not budge.
They called back again and pushed it another two weeks. I hate them even more.
She had an appointment with a pulmonologist that we had been waiting for now four months!
She was getting a pet scan, cat scan and breathing test and they were having a second, third, fourth look.
But I knew. I knew it was not cancer. They finally see her and admit to me that it is NOT cancer. That it has not grown in a year and it is not cancer. We had a follow up at the end of August and those nodules have not grown. They don't know what they are but they are not cancer. But still, doctors keep bringing it up and saying it is cancer.
I had a fight with an ER doc who insisted she knew it was cancer.
I told her "At what point does your giant ego allow you to admit you're wrong?"
At what point do they admit that the Lisinopril is the cause. When will that happen? I don't know.
She was home from March 29 through August 3rd before she needed to go into the hospital and they admitted her. She had terrible diarrhea, we thought it might be c-diff again but turns out she was badly impacted. Lack of physical movement will do that to you. She was in the hospital for over a week. I immediately began looking for a skilled care rehab so we could get her six days a week of therapy. I found one.
I began another fight with Medicare who made her stay in the hospital two extra days because they had not properly updated her records. But I finally got her admitted. This rehab kind of sucks. There were a lot of perks at the other place we had not realized were even there. But my parents insist on staying even though it is not ideal. And the speech therapist is leaps and bounds better than Tammy.
Last week, my mom had to be admitted to the hospital again. Her third bout with pneumonia. She was there for about ten days with respiratory distress. Three nights ago, she was a half hour away from being put on a ventilator and miraculously, her CO2 levels began to fall into normal ranges moments before they intubated.
She is now back at the skilled care and I will continue the fight to keep her healthy and happy and get her back to mobility.
I pick up this story when my mother moved upstairs to the "long term care" floor. Really, this is where the majority of the Alzheimer's patients live. It's sad up there. There is a different vibe, and you have to get a code to get out of the locked door. I had hoped this was going to be very temporary, but I was nervous.
In these meetings with nurses, we made a lot of care plans for the outcome we wanted but you still feel like you are in a trap. My mother was nowhere near being able to care for herself and if we wanted a successful home coming, she would need to be practiced and able to participate in her care. So, I said "What is the problem with her using the toilet?"
I spoke with the nurses first thing as I was going to have to get to know a whole new set of nurses. Now, I have to tell you, those nurses on the rehab floor were really good. I only had one bad run in with someone in three months and she was reassigned. They were just really compassionate and good at their jobs.
So, I kind of expect the same thing on this floor. But we don't get it.
My mom is still supposed to go to therapy every day and keep getting worked with and keep making progress.
And they begin to "threaten" us now. The threat has always been there but now it is more pronounced.
"If your mother doesn't show measurable progress and is not displaying adequate initiative, then we will have to report her to Medicare as uncooperative and they will cut off the rehab."
So, my mother is not really allowed to have a bad day or be cranky. The uncooperative label is a big deal.
I tried to back off the bathroom issue after and ugly incident with her. Clearly she needs some control and her daughter bringing it up is bothering her. She won't talk to me about it. I try to go and have a conversation with her and she tells me the discussion is over and turns up the television so she can't hear me. I think, my mother is now a rebellious teenager and I guess this is how I behaved with her.
I go to the nurse at the desk who is new to me and I explain to her that my mother needs to be out of diapers. She is not incontinent, she can easily be trained to go but I need her help.
I'm going to call this nurse Jane.
Jane says to me "No problem! I will start right away and put a note in her chart. We will have her bathroom trained this week."
And I believe this will happen. And I don't bring it up with my mom because I want to be her daughter and not pester her and step on her dignity.
I don't bring it up for the next three visits. I assume it is happening because I was assured that it would happen.
I check back in with Jane after three days when I see her on the floor.
Jane says "It's going great! She gets up and goes now, she lets us know when she needs to and she is doing terrific."
I am completely encouraged until I find out this is A LIE. The next day I am with my mother and a nurse's aid comes in and brings fresh diapers. I look at them and say "But Mom, I thought you were using the bathroom."
"No, I haven't."
I am confused. She confesses to me that she has not tried and they have not asked her to-- not one time. I am now furious but I can't find Jane anywhere to confront her and ask her to explain. I go right to the head of nursing and I tell her my story. She is very understanding but she says "Well, I wouldn't say she lied."
NO. She lied to me. She lied right in my face. There is no gray area here. That woman told me a complete lie. But I have now thrown an epic fit and insist that they deal with it.
Now my mother digs her heels in and refuses to go. She won't even try. They are all now legitimately trying and we have talks with her and she refuses.
I realize that she is VERY depressed. She is terrified of falling if she tries to get up and use the toilet and she has no control over any of this. So, this is the battle she wages. And she is going to win because if you take away the diapers, she pees the bed. No one can talk with her. And my father will not get involved or support us. He thinks she should be allowed to do nothing and he will be happy sitting in the room with her if she never moves or goes outside or does anything but watch Jeopardy at 4:30 every day.
This is NOT my mother. I have no idea who this woman is. This disease has robbed her of her dignity, her independence and her zest for life. This woman is terrified to try to use the toilet, she does not tell me stories or smile and there is no light in her eyes. I despair and spend days and nights crying and fighting.
I go to the nursing home and have epic battles and no one will support me.
Meanwhile, she is for a time still getting physical therapy and speech therapy. Every day, the Speech lady, who I will name Tammy and who I still do not like, who is still pessimistic and difficult, puts a stimulator around my mother's neck and sends electrical impulses to cause her muscles to contract so she can regain her swallow muscles. Tammy insists all the time that this is useless and will never work and my mother will never eat again. But I tell her that we cannot know unless we try and insist that we do.
My mother is scheduled for a barium swallow test in December of 2012. And in spite of Tammy's negative attitude, my mother passes the swallow test! He muscles are recovering! This is the greatest piece of hope ever. Tammy didn't want to work with her, she shrugged every day and told me my mother would never eat again and I should just accept it.
And within a few days my mother was eating oatmeal and salad. She was sitting at the lunch table and making progress. I am thrilled with any good news!
And this was all going well until PT labeled her uncooperative and announced she had hit a plateau and they would no longer work with her.
We go into another meeting with the nurses and I ask "If she is not getting exercise, how will she get better?"
They explain to me that my mother is NOT demonstrating any desire to do more than they are asking her to do. Really? But she is doing all that you ask, I say. And they say "She is not asking to do more than we ask her to do and therefore she is uncooperative."
Which JUST pisses me off.
So, they put her on "restorative therapy" which means that a new nurse comes once a day and asks her to move her arms and legs. She never gets out of bed and works on the bars or walks. And my father argues with them about this but there is not much we can do but argue.
I ask the lady doing restorative therapy to please get her up out of bed, that they are putting her at risk for pneumonia and she says okay but unless I am right there, she does below the bare minimum and my mother is now so depressed that while she does what she is asked to do, her energy level is waning. And they continue to let her go down hill. They tell me she cannot get back in full time PT unless she demonstrates initiative. How can you get a depressed person to want to demonstrate initiative?
SIDEBAR here. This is an important part of the story.
When my mother was first coming out of the ICU psychosis after being drugged to the hilt when she had three tubes draining fluid from her lungs, one of her doctors noticed she was not making a lot of eye contact and she had flat affect.
He decided she was depressed. Depression runs in our family. I have no doubt she was depressed but she had just survived a very traumatic illness and she HATES hospitals. The morphine had given her severe constipation and she had to undergo a surgical procedure where they dealt with her being seriously impacted in her upper colon.
This doctor decided to put her on anti depressants. He told me casually during an update conversation over the phone. This made me uneasy. After all the recent drug reactions, introducing antidepressants at this juncture seemed unwise.
"Did you ask her if she wanted to be on this drug?"
He hesitated, and I knew that he was making the decision to lie to me.
"Of course I did."
I said "I don't believe you. My mother would never consent to them."
Part of me thought she might need them but her mind was sharp, it was still up to her to decide that for herself. I marched into the hospital room, questioned my mother, who, as I suspected knew nothing about the antidepressant she had been taking for three days. The doctor had actually said "I think she perked up today because the antidepressant is working."
Did he go to Medical school? That is not how those drugs work. They have to build up in your system.
So, I paged the doctor, and made him come to the room and I said to my mother.
"please make your wishes known to him. This drug can be very beneficial to you should you decide to take it. it can help you with depression but this is YOUR decision. This drug is not necessary to your survival so it is up to you to decide."
She said very clearly, with some effort because an NG tube had been down her throat for over a week.
"I was not aware I was on this drug and I want you to take me off of it."
I'm sure the doctor was pissed off but I don't care.
Now, the conversation of antidepressants was coming up again in the nursing home. My father doesn't understand them or how they work so he thinks they and psychiatry are totally unnecessary. I begged my mother to at least talk to a therapist. She grudgingly agreed but it didn't happen. Somehow that guy just never stopped by...
I began to make plans to just get my mother home. I realized that this battle with them was only going to get worse and worse. There was no point in continuing here with this kind of terrible care. It was now January and they were making the least effort possible. My mother was in the bed full time and she got up for one hour at lunch on weekdays, I could not convince them to do more with her and all they ever did was blame HER for her lack of progress. I began to realize that only certain people called her uncooperative and that others completely contradicted this assertion.
In early February, I get a call from Tammy, the speech therapist and she says that my mother is refusing to eat, that she doesn't like the food. I say that I will cook something for her and try to help with that.
Getting someone off a feeding tube is a process. They have to relearn eating and they have to get a certain percentage of food to replace a tube feed. She was getting lunch every day and that was it.
My mother started to say she wasn't feeling well, she didn't want to eat, could they just put her back in the bed. I brought my mom some lasagna and she barely touched it. I noticed that she was having quite a few breathing problems and Tammy just kept insisting what a problem my mother was and how she was making the decision to be difficult and she was trying to encourage her to eat. But I could see that my mom was sick and coughing and not feeling well. Tammy refused to "hear" this and just kept telling me how treating her was pointless when she was going to be this uncooperative. The next day, my mother had an appointment with the neurologist. I had started going to all the doctor appointments with her and my dad. So, I thought I would ask him what he thought was going on.
The whole time, my mother was short of breath and struggled to do the slightest thing. I asked the doctor- "Am I crazy or does this look like pneumonia?"
Again, hard to tell with my mom because she doesn't present in a typical manner.
The neurologist said to me "She seems very sick to me, I am not an ER doc but if this were my mother, I would take her to the ER right now."
I'm going to skip the epic battle with my dad... there was one. He did not agree she was sick, and insisted she go back to the skilled care place, that she was just tired and needed to rest, that she had a chest xray a few days ago and she was fine. I have to tell you, though, when you know something in your gut, you have to listen. So, I lost that battle and she was taken back to the home. At which point, I marched up to the desk and found one of the good nurses who I had a good rapport with. I made her come with me and examine my mom.
"Tell me that her lungs are bad and I am not imagining this looks like pneumonia."
The nurse was immediately very concerned, she nodded and of course realized that this situation had been going on for a while and no one had properly noticed.
The nurse said "She needs an ambulance right now."
She explained all this to my dad who actually said the words "This is the first I am hearing of this."
It is exhausting fighting this hard all the time. It was indeed pneumonia. And it was bad. This was the last day she spent in this skilled care facility. It was February 7, 2013. I have no doubt that their lack of physical therapy caused this bout of pneumonia. I have no doubt they are more than culpable for what happened, this neglect and web of lies and incompetence led to this situation and now, my mother was right back where she started before she was ever in their care.
As a last note on this, when I went back to pick up my mother's things, I dropped by Tammy's office to let her know a few things.
I said to her "I need you to know that my mother tried very hard to cooperate with you but you needed to understand that she was too sick to eat, and you didn't notice. You were trying to force feed a patient with pneumonia. You missed all the signs that she will gravely ill and you blamed her. I'm telling you this so that you don't miss the signs with your next patient."
Tammy said "I still think your mother will never be able to eat normally and will be at risk for aspiration the rest of her life. You probably need to come out of denial about this. She's not going to get better."
I said "Did you hear what I just told you? She has pneumonia. And you didn't notice. As for her future, that isn't written yet."
Tammy shrugged and looked at me with the simpering, condescending look. She didn't get it- at all. What a waste of time. My mother made huge progress in spite of her negativity. Every speech therapist since then has been much more positive about working with her and future outcome.
I feel very sorry for Tammy's future patients. The woman is incompetent and I was very glad to say goodbye to her.
The next part is hospital and home-
I begin this part of the story with my mother's transfer to skilled nursing care. That particular horror is coming next and it comes with ups and downs and highs and lows, but first I realized I need to cover an important issue here.
I need to go back a little here and say there was never any doubt for me that Lisinopril caused this illness. What happened to my mother is consistent with every listed risk and side effect and she was badly failed by the doctor who prescribed it.
But what began to happen while she was in the hospital is that the doctors began to cast shadows at that obvious fact. She took the drug. She got sick. Logic, right? She wasn't sick before, she took a drug that made her sick. Oh... dear, how fast their leaps of logic, how twisted this story will become.
When they diagnosed this disease, Dermatomyositis, no one had ever connected it with the drug Lisinopril. Mainly the cause of this illness is CANCER. So, instead of looking further into the connection with the drug, the doctors began to look for cancer. My mother got cat scans, pet scans, hydoscans, poked, prodded, pestered in the desperate search for the BIG C. Except they couldn't exactly find it. No, that's not accurate, they couldn't find it at all. What they did find is two nodules in her lung that were "suspicious". They decided to presume they might be cancer. But they couldn't prove it because they couldn't biopsy it. To do so would collapse her lung. So they decided to "wait and see". Which makes me think they were never too serious about this because this wait and see took about six months.
So, my mom goes into skilled care and initially everything is great. The staff is really caring, there is wifi in the building and she has her own private room really near the nurses station. There is a phone and a television in the room. They get her a wheelchair and almost everyone is great.
On her second day, I talked to the physical therapists, the occupational therapists, the floor nurses. They are sunshine and happiness, they are all very positive. I like almost everyone. I stop in to see the speech therapist and sit down in her office. She says to me...
"I met your mother this morning and I assessed her. She is borderline dementia."
I explain NO, no she does not. I tell this woman that my mother has a PhD, two Masters degrees, that she is fluent in seven languages and I would know if she had brain damage and she does not.
The woman flashed a vacant smile at me and told me my mother refused to answer her questions and so she wrote her down as having dementia.
Oh... I wanted to say all kinds of things... but I took a deep breath and I was NICE.
"You need to re-test her. My guess is that you insulted her and she shut you out. She has been through a lot but I assure you, I would know if she had dementia"
The woman gave me another simpering, condescending smile and shrugged, as if she was humoring me rather than just being wrong.
She grudgingly agreed to re-test my mother. If she had not, I would have really made a fuss and she could see that coming.
I marched into my mom's room.
"Mom, what did you do when that lady came in to ask you questions?"
My mother crossed her arms and looked away.
"Mom? What did you say to her?"
My mother met my eyes, finally.
"I told her to shut up and go away, that her questions were stupid and I was not answering them. For God's sake, she asked me to do math with apples! Am I in kindergarten?"
I calmly explained that this place was full of elderly people who had been through trauma and had different levels of cognitive abilities.
"I'm sorry, I screwed up. I'll answer her stupid questions."
"She's an idiot, Ma, she was completely condescending to me, but we have to work with her to get you well, so can you please answer her questions?"
My mother agreed.
Honestly, after being whacked out on fentanyl and morphine for five days, her brain was a little wonky but she was nowhere near demented, but it was the beginning of that speech therapist and her having a tenuous relationship. My mother put up with her and was nice but that woman is pretty bad at her job. I'll get to that later.
Mostly, things started going well, though. She was going to therapy every day and getting stronger and making great progress. The PT and OT people were fantastic and there were very few problems. UNTIL, one day we noticed that my mom's rash was back. That's a bad sign. We questioned it. They said it was a reaction to soap, or the lotion. She started itching. The rash got worse.
Finally, we started taking a look at her medications. For three weeks, she had been given the WRONG medication and NO ONE noticed. She had accidentally been given a heart medication that she didn't need. WTF! There was barely an apology and a pathetic explanation about how the pharmacy couldn't read the doctors handwriting and someone accidentally verified it... but no one asked US. That was the last thing she needed.
But we fixed it and kept a really close eye on it from that day on.
And pretty soon, they had her practicing walking with a walker. It was terrific! We were racing the clock, though. Medicare only gives you 100 days. They don't care how much rehab you need, that is all you get and the deadline was fast approaching and she wasn't there yet. She needed more time.
I started talking to them about getting her out of diapers and back on the toilet, which was key to her coming home. But for some reason, they just couldn't be bothered. And then my mother started to rebel like a teenager. I brought it up to her and she refused. Refused to try, refused to shower, refused to sit on the toilet or tell me what the problem was.
And my father was enabling her to do this. He did things for her that clearly she was capable of doing herself. He became a huge obstacle to her recovery.
My mother, who had written books, was refusing to read. What the hell was going on here?
Finally, our time ran out and we had to have the meeting.
We had two choices. Keep her there and go private pay and she could continue with therapy covered by Medicare part B or come home and get a private nurse and no therapy. We opted for the first option and told them that we needed her to have more time and become more independent.
She also had to move upstairs to the Alzheimer's Floor. This began a fresh nightmare...
My third child, Derek was 7 lbs 15 oz. He was born two weeks early. I never thought I was capable of doing anything on time, let alone early. My first two children had been predictably late, and I thought surely this one would be as well. He tried to come four weeks early but due to dumb luck and lots of intervention, I managed to hold him in the extra two weeks necessary for his lungs to fully develop and he did come out screaming all the way.
He was not an easy birth, I had to deliver head and shoulder and he came out slowly, carefully but ultimately whole and healthy. A few weeks into his life, he developed an umbilical hernia, and had a tremendous amount of digestive problems. But he was a happy, smiley engaged baby and he hit his milestones more or less on time.
I mention the umbilical hernia and digestive problems because it seems to plague a great deal of kids later diagnosed with autism, but back then, I never saw it coming. By the time Derek was a year old, I knew he was going to be what they would all call different. He was very definitely shy, but that was okay. There were not a lot of kids that were shyer than I was and I had managed to fling myself out of my shell eventually and do just fine. And if he did not, so what? Who wants a cookie cutter kid? Not me.
In fact, I am so grateful for the shyness. It taught me to watch and listen. Great skills for a writer. If you are too afraid to talk to people, you are in a position of observation and it teaches you very much.
I knew, calmly and surely he would make friends at his own pace. He seemed almost too attached to his older sister, followed her everywhere and she used her voice for him and understood him, so I was not too worried. It was nice they loved each other so much.
I put him in pre-school when he was 2-3 and immediately began getting complaints about him. He wouldn't play with the other kids, he would play next to them, quietly, but he wasn't engaging. To this complaint, I always said "So what? He's not hurting anyone, bullying anyone or being disruptive, if he doesn't want to make friends, he doesn't have to."
Funny, NO one ever seemed to notice I had no friends and engaged in a lot of watching when I was his age. I could not understand why they wouldn't just let him be who he was. Why was different always BAD?
True, he did wander a bit out of "circle time" but you know, he was three... and I didn't worry about it too much. I knew he would grow out of that because he understood rules and wanted to follow them.
But, besides me, no one really understood him or knew how to communicate with him very well.
He had an interesting sort of language where he repeated things he heard in movies that he watched over and over.
He would like a sound and repeat the words. And if you didn't get his references, well... it looked a lot strange.
He also loved trains. He used to line them up all the time. And he would play quietly by himself organizing his little world.
Derek was also the kid that tried my patience a great deal. I figured out early he did not communicate like other kids and you had to explain things to him differently. My mother and I called him "Dewick the Literal". You couldn't joke with him like other kids, sarcasm escaped him. And don't try to sneak up on him or scare him, he hated loud noises and bad smells and anything that would cause him sensory overload. When he asked you a question, you would have to break it down to the fundamentals. But I liked that he made me really think about things. And I liked that he really thought about things. You could tell he had a lot going on inside his head. I KNEW my child was a brilliant thinker. He thought right outside the box.
All of these things I describe to you are signs of autism.
They don't really seem like them, do they?
His last year of pre-school, they cornered me and told me he was not ready for kindergarten and he was going to fail all the tests. They said he was slow.
I had him "tested" but really, I think they set him up for failure and to be held back a year. I regret letting them do it. If there is one thing I would go back and change it would be allowing them to bully me into him being held back. No one tested his vision, and he was very far sighted. As soon as he had glasses, all of that "reading trouble" he was having was gone. In first grade, he went from not reading to reading on a third grade level in about a month. Still, I couldn't fix what I had done and because he was so strange and would not make eye contact and talked about things the teachers did not understand and made strange connections of one thing to another, they labeled him slow.
I had meetings with teachers. They would tell me I would be lucky if he graduated high school and I had to accept that my child was not really going to make it academically. They made all kinds of dire predictions.
I remember saying "When my younger brother was seven, his second grade teacher told my mother he was slow and stupid and would never amount to anything. He speaks and reads five languages. One of his languages is ancient Greek. My mother knew better and so do I. You know what runs in my family? Weird and misunderstood. But stupid doesn't run in my family. You don't understand my kid and one day, the level of his intelligence will shock your small little mind. He is more brilliant than you can possibly imagine."
And I KNEW this. In my gut, I knew this. He seemed a lot like my brother, a deep well of intelligence with some social challenges. Challenges my brother overcame, mind you. (Incidentally, this brother who wasn't going to make it out of high school has his PhD.)
In fourth grade, he changed schools and the school suggested some testing be done so we could figure out his processing difficulties. It was clear he just thought about things in a different way. I was fine with the testing. I wanted to know how we could best help him show what was inside him.
They brought me back the test results after two months. Autism.
Wait, what??? Kids with autism did not speak, right? Weren't they trapped in their own world? I had seen a movie of the week... I had NO idea.
Turns out, not so much like the movie of the week.
Also, the counselor explained it to me in the worst way.
She said "Well, he fits none of the specific patterns exactly. He's a complete mystery. It's like he has a smattering of things that we can fit into this diagnosis but if we classify him this way, we can get him help. So we are calling it "Pervasive Developmental Disorder". So that we can get him intervention and help to get through school."
Well, I thought, he definitely needs some help with things. In spite of him being so smart, he doesn't understand the point of school, so he won't apply himself. You see, Derek had not figured out yet, how school could LITERALLY benefit him, it was just somewhere he had to go and endure every day. In other areas, he was excelling off the charts.
I know it sounds frivolous but he figured out every video game that came across his path. He would finish them in half the time everyone else was struggling with them. And he was designing games in his head. Spending hours figuring out how it worked and what went into creating a game. It was not just a hobby. The way he was thinking about computers was quite advanced. I know it's one of those things that mom's say, but I knew my guy was smart in ways the world could not begin to imagine.
The world does not understand autism. Does not understand how his brain works differently from others. I am not sure I understand it completely. It has definite drawbacks. Socially, he struggles every day with understanding all these crazy unspoken social rules. Why is it that we can't just say what we mean? Why do girls have to be subtle? Can't they just tell guys they like them? Yeah... poor kid does not get subtle.
But what he does get is ART. He gets architecture, form and structure.
He gets how lines fit together. He understands how to use Photoshop and how logical things fit together and he gets it in a deep and intuitive way.
He made this figurative language lady have to re-think her vocabulary. He teaches me how to be a better me.
The gift of autism is this kind of understanding that we mere mortals don't have. His BRAIN has laser focus. I remember his pre-school teacher suggesting to me that he had ADHD. Idiot. This is why she is not a doctor or a very observant person. Kids with ADHD don't have laser focus. I laughed out loud at her. I think she might have been offended, but she really was grasping at clouds in the sky and thinking they were made of some sort of tangible cotton.
Today, he is a college student. This is something his high school special education counselor said he would never do. She told me to prepare him for trade school because he didn't have what it takes to go to college.
She wanted me to "manage my expectations". I was furious, livid. I turned on her in an instant.
"Did you tell him that? Did you tell him he would never go to college?"
She flushed and lamely said "Well no, but..."
I interrupted. "Never tell him that. Or I guarantee you this, I will make your job disappear with the hell I will unleash on you. You had better not even whisper that in your sleep."
She was completely taken aback.
"Mark my words, lady," I said. "He has not begun to reach his potential. One day, he will be able to identify every part of your computer and you will still have no idea what F4 does. Meanwhile, he will have an advanced understanding of things you can't even begin to wrap your brain around. You have no idea the greatness in him. I'm sorry you are too small minded to see it but I will not have you put arbitrary limits on my son because you don't understand him."
She apologized in some pathetic effort to cover how badly she had messed up, betrayed her student, betrayed her job and betrayed her school.
I think she learned a thing or two that day.
I hope she did.
Derek just certified in photoshop and the computer I type this on... he built it for me.
I think the best part is that I was right about him. I was right that he was brilliant, I was right that he was special, and I was right to believe in him. How could any mother ever be wrong about those three things?
I have spent the last year not talking about this on facebook, and discussing it with just a few close friends but it's time, I think to reach out and make it a little more public. I've been respecting my mother's privacy as I know she doesn't want her life just openly discussed, which is why I kept it private up til now.
My hope is, by sharing this, I will be able to find others going through it and make a connection, maybe to a doctor or another person who has gone through something similar. So, please, if you like, share this with anyone you think it would be helpful to and let's see if we can find some good out of this nightmare.
Our story begins in March of 2012, but really before that, you should know, my mother was a very active senior citizen. She traveled extensively and was always at work doing research, writing books and articles and spending time going to the opera in London, Paris, New York and Vienna. She walked everywhere and was very fit and active. She ate properly and did not smoke or drink excessively.
But she had this mole that was kind of bothersome, so she thought she should get it looked at. She never really had a primary doctor so she thought she would get a recommendation from my dad's diabetes doctor so she could go see a dermatologist. The guy was kind of an ass and insisted she come in for an office visit and he do a physical before he would refer. Grudgingly, she agreed. He did the physical and based on ONE blood pressure reading that was a little high, he decided she had high blood pressure and prescribed her Lisinopril.
He told her if she didn't take it, she would probably have a stroke.
So, she took it.
And immediately, she began to have bad side effects.
She coughed, was exhausted but couldn't sleep, dizzy, nauseated, short of breath.
After a few days she called him and reported these symptoms.
He said "Okay, take some Losartran"
She went and got those pills and took them and the side effects were even worse.
She called him back.
He said "Just keep taking the Lisinopril until it doesn't bother you any more and your body will get used to it. But don't STOP taking it because you WILL have a stroke"
So, she kept taking it.
And we all noticed and said "Hey, that medication seems to be making you sick" and we looked for alternatives and gave her other suggestions and asked her to stop taking the drug.
But that asshole doctor had scared her very badly and she was trying to follow his orders.
(During this time she saw the dermatologist and the mole was nothing to worry about)
She kept taking this drug for a month. And she got sicker and sicker. She began to have severe pains in her upper arms and upper legs. She coughed persistently, she was always short of breath, exhausted. I looked at the list of side effects. She hit every one. She started to get a very bad rash on her her chest and face.
Go back to that doctor! We said. Tell him what is going on.
He wouldn't even see her. He sent her to a nurse practitioner who dismissed every complaint and handed her another blood pressure medication prescription.
I wish I had gone with her to that visit.
We all agreed that she should stop taking Lisinopril and get a second opinion. She stopped. She didn't have a stroke, she just didn't get better. She got worse. She was so exhausted and in so much pain, she couldn't sleep or function. We decided to get a second opinion.
I started looking for doctors and my dad called his heart doctor.
She got in to see him very soon and he immediately knew something was terribly wrong. He got her admitted to the hospital for testing and the doctors were very confused for several days. Finally, they sent in a rheumatologist who did a muscle biopsy of the muscle in her arm. Her muscle was necrotic. It was dying. I freaked when I heard this.
Can she recover? Will she get better?
They said she could and she probably would. They diagnosed an autoimmune disorder called "dermatomyositis" and put her on Prednisone. She went home for a few days and did not get any better, so she returned to the hospital and they put her on IV Prednisone. At this time, she was still mobile. I could pull her to her feet and she could walk on her own. After a few days in the hospital, she got better enough to come home. The doctor had said - Liquid diet- as she was afraid my mother's swallow muscles were not strong- she wanted my mom on a feeding tube but my mom refused. It was another thing that was not explained well by the doctors.
Her muscle enzymes were high, her creatine levels were elevated and her body was attacking itself.
We were all thinking she was just going to get better now because they gave her steroids. I'm afraid they did not explain well, gave us unclear expectations and were generally leaving us unprepared and badly advised. We took her home thinking she would get better. NO ONE told us that it was going to take weeks for her muscle enzymes to return to normal and then once they did, it was going to take another four weeks of her body being at normal creatine levels for the muscle recovery to begin.
She went home. The physical therapist came to the house ONE time, labeled my mother as uncooperative and never returned. No one knew this. My father put the list of exercises under a stack of papers and never did them with her. Meanwhile, my mother got worse and worse. Her swallow muscles began to fail and within about a week, she began to choke on everything. She refused to eat anything but cream of chicken soup and cream of tomato soup. She got weaker and weaker and started feeling terrible. She could barely swallow her daily Prednisone pill. She began to lose the ability to walk.
It took two of us to take her to the bathroom, she could barely support herself.
I was out of town for a week and when I returned, she was in terrible shape.
It all happened slowly and we finally had a family meeting and agreed we needed help and some kind of rehab program. There was a nurse coming once a week. My mother had become deeply uncommunicative and would sit for hours and stare. She wouldn't do anything, saying she was too tired to eat or do her exercises. After I discovered that physical therapy had abandoned her, I tried to do her exercises with her until we could get her better help.
I got her protein shakes but she could barely drink without choking.
Finally a nurse showed up and informed us we needed to call an ambulance because she had pneumonia. It was very, very bad. We had no clue she was so sick. The prednisone repressed any fever and we had no idea what this looked like.
She was in the hospital for a month starting with ICU and three drains in her right lung. Her right lung was encased and both were full of all the food she had aspirated into her lungs. We felt terrible for trying to get her to eat. We felt terrible for not knowing. We all sat by her bedside every day.
She pulled through it all. We were amazed and grateful.
I worked very hard to find a good rehab and I did. She was eligible for 100 days of medicare rehab and after about five weeks in the hospital, we moved her to skilled care rehab. She started doing really well very soon. The first few days, they had her standing. By the end of eight weeks, she was walking with a walker. She was now on a feeding tube that she had inserted in her stomach but was working with speech therapy to get her swallow muscles recovering.
This brings us to the end of part one of this story.