I’ve still been on the research break I mentioned in my last post. I have tried to relax and enjoy the spring time with my family. On many days, I still feel a little helpless as soon as I wake up. A little lost but pushing on. My son is gaining more understanding all of the time but he still doesn’t talk and his theory of mind skills are growing slowly still. He is very much in his own world, on his time. There are no conversations of course, and not a lot of meaningful interaction with his brother. That has been the main sadness for me but I have learned to deal with my feelings and look at the big picture. Some of the biggest progress lately is that we can all ask him for a kiss and he will put his mouth on ours or our cheek. He also has been giving us tiny hugs around our waists or legs while we are standing. And for two weeks straight he has slept all night. I almost don’t want to write about it, in fear of jinxing it. Sometimes he might wake at 5 or 6 instead of 7, but he hasn’t been waking at 1 or 3 wanting water and seeming confused. He also falls asleep faster and without less fuss. This all gives me a big hope for his future.
Since turning 35 my gray hairs have definitely increased. They were probably sprouting anyway but I feel like it makes sense to add this to my story today. The past year has been the most filled. I felt like I was floating along a little. But then my husband had failed eye muscle surgeries, my mom is struggling with metastasized breast cancer and I live so far away, Liam started kindergarten which has brought out good things but he also is often anxious and worried (an all thinking and feeling person, wonder where he gets that from…) and Gavin has autism, still. I kept thinking it was going to slowly disappear and go away. Just like his older brother overcame some of his issues with social skills, I thought it will all happen for Gavin too. After all, we were doing so many good things.
It turns out that most things don’t just disappear once you get them.
There are things you can work on. There are things you can’t.
Life is beautiful, but unfair.
Overall, it is easy for a lot of people to ignore the mental health problems in the world right now, unless it affects them personally. Or unless you are actively noticing it, like me. Sometimes it feels like a burden that I am seeing it and not quite sure what to do with it all. But I find it’s also keeping me alert and thinking. Add it makes this post possible today.
I live in Portland, Oregon, and I drive a lot every day. I see a lot of people just from inside my car as I putter down Powell Boulevard and 82nd Avenue. There are people with mental health issues who talk to themselves, wave their hands around to another person unseen, and do tricks as if they have an audience they can see. Whether these issues were brought on by drugs, toxins, or genetics, it is one of the most sad things to witness on the daily. I see some of the same individuals a few times a week who are walking no where in particular, over and over. I saw police officers place a reflective yellow vest on a woman who crosses the street a lot, mostly in places that are definitely not crosswalks. They must not have much else to offer for her except a yellow vest. A cover up to a bigger problem with no solution. I also see a woman who travels everywhere on a mobility scooter, her head hanging low because she can’t move it. Often people stop their car and push the crosswalk button for her because sometimes it looks like she wasn’t able to do it for a while. I will take a turn being that person one day, pushing the button.
I see older people in the grocery store with mental decline. They are looking at something on the shelf, just smiling at the boxes with big grins. Are they having a good memory, thinking of something happy? Or is it something else? There is never a dull moment wherever I go. Whenever I get a boost of happiness myself or a feeling of “normality” I see something again and then my mind begins to race about what’s going on with these people, and why? Of course, I am so aware of mental health so perhaps I see the signs of “things” more often. But I definitely know there are issues and want to know how to stop them. There is no reason for anyone to suffer mentally or physically if there could have been any possible way to prevent it.
Sometimes there is a physical trait that can tell you if someone may suffer from a mental abnormality. Gavin has been walking on his toes since he was about two years old. Sometimes if we are walking down the sidewalk he will stop for a while and walk “flatly” but most of the time he pops up on those little feet. It’s to the point to where I think his toes hurt sometimes. He has a new appointment next week to be evaluated for orthotics. I have mixed feelings about this. I know he likes to toe walk or simply just has a need to. I also notice other people toe walking now and I didn’t before. Just this week I noticed two women toe walking. One was on a sidewalk headed to a bus stop wearing black Converse shoes that laced up to her knees. Another woman was walking toward the grocery store entrance as I was leaving. Not only was she walking on her toes but she had her head turned to her right as she walked but her eyes were looking straight. I looked curiously right into hers and gave her a smile. But then I realized that she really was looking past me or she didn’t want to smile. It’s possible that both of these woman have zero problems with their mental health and just happen to toe walk or have an issue from having a stroke. But sometimes the symptom of toe walking does mean other things and it’s very individual on how one deals with it.
What would have happened if these two individuals wore orthotics in their shoes when they were little? Would their life be improved? Or did toe walking happen when they were adults? Do they have problems with their toes or feet now, or are they okay? There is no guidebook for me on any of this. I just observe and research in a perpetual spiral until I find my own answers.
Then I ask myself, at some point, will Gavin stop walking on his toes? Maybe something will click and it will just stop. I feel like when he is walking “normally” with me along the sidewalk that is actually focusing better and not thinking about “feeling” something in his feet. So part of me wants to try out orthotics to force his feet to stay flat and observe the way he acts during these times.
So back to noticing the mental health problem on a nearly daily basis: My husband and I were on a weekend trip. I didn’t notice anyone with a mental health problem in Hood River, Oregon. But when we took a detour on the way back to Portland, we stopped in a little town which I’ll just keep nameless. The only thing we did there was eat at a Mexican restaurant. It looked like the main talk of the town and it was busy with every kind of person from the area. Almost immediately after we sat down, I noticed a young man walk by the table and the corner of my eye noticed that his khaki pants were a little too short. I looked up and saw his face and knew. He was on a lunch trip with a few other young people like him with a caretaker. And again I thought how sad it is that there are so many mental health issues. So many people are not living normal, happy lives. Maybe to themselves, they are happy and feel fine and that’s great, at least. But when I imagine everything they could be doing and experiencing, the sadness is deep. Were their issues present since birth? What are their stories? Where are their parents? I have a lot of questions. Did they try anything when their kids were little? Did they just let the symptoms run their course? I can’t imagine what they all went through.
It’s hard to let anything run its course when dealing with autism. Sometimes you get brave and you try something, or you stop something. And then you wait. We have been on a supplement break for about three months to just give his body a little break and the medicine cabinet. We were emptying many different capsules into Gavin’s food for years. Now he really just takes things at random if I think of it, we give him B12 injections twice a week, and he takes CoQ10/L-carnitine liquid along with a leucovorin liquid twice a day. Since being diligent with just these things, his great improvement with sleep happened. Now with things so calm, we can slowly add in other things again and see what happens.
On top of all this, I worry about myself and my family. While we are okay now, what can we do now to protect our own mental health? I worry about getting older. I read that right now, about 50 million people suffer from dementia. There are children’s books now that tell kids how to deal with grandpa’s failing memory. Everyone says eat the Mediterranean diet, don’t drink out of aluminum cans, take fish oil, and exercise because the key is prevention. There has to be a bigger key than that. This is just too many people with dementia, and developing Alzheimer’s, the most common type of dementia.
I’m at the end of my story for today. While it feels like there is a lot of despair and disrepair in my post today overall, I promise I am happy and excited, although with a careful and watchful eye on all of my family. Gavin is doing great at ABA therapy and his sleep is so good. What more can I ask for right now? We are still on board to give him a stem cell injection, it will be next month instead after I take a trip back home to be with my parents for a few days.