I haven’t wrote here since June. That feels like a lifetime ago now. My mom died in July. Then the other months just tick tocked along the line. My oldest son and I just got back from a long visit with my dad. My eyes are still puffy and vision is blurry as I look at this screen. I think it’s a combination of travel and allergies. It was such a good and busy trip, especially for my son and for my dad. They both really needed it. I did too of course but sometimes I feel like a puppeteer adjusting everyone’s happiness. (That’s one definition of a parent.) I’m still getting back to normal even though I slept really well. I had a lot on my mind this morning that I needed to figure out. Most of it is about Gavin. He will be five in January and I am simply scared. I want him to talk. I want him to love and be loved. I want him to experience life as we know how to experience it. With autism I know that’s a hard order to fill. And “normal” life for everyone else It’s not always roses but I want him to travel, read, experiment, and be himself. I’d be happy if he became a surfer, or a fisherman, or a nurse, or a food truck cook, or a domino player. It could be the most random damn thing I’ve ever heard of. But I just want him to be happy. 

As I watched my oldest son blossom in maturity during our trip to see his grandpa, I had a tug in my heart for my youngest son to have those moments too. We haven’t even been on a trip together yet. Are trips necessary at this young age? No. But I would like to. I think he would too. And I know there is a way to get him more connected in our world. But how?

For the past five years, we have logged many hours into doctors offices, labs to draw blood, different therapy offices, and the most hours have just been in the car going back and forth. All the while, I tried to give all I could to our oldest son for treasured memories and to capture the innocence of his childhood. Even though my husband and I were always hurting to not see our sons experience all of this as a pair, a team – as “normal” brothers. As Christmas approaches right now, I really don’t have so many precious things on my mind. It’s because I feel like I am losing time. Most of my thoughts revolve around everything logical, real and solid. Doesn’t sound very romantic or whimsical does it? My oldest son is now seven but is already far wiser than his years. And my youngest, although still hanging on to the number four, is much the same although there have been big changes in the past year. They are close in age but they are becoming farther apart in their connection to each other as my oldest soars on in his own development. 

As I juggle these feelings of holidays and the special moments I crave, this year I feel more like a warrior on a mission. I haven’t sat down and planned out the Christmas list for everyone or surprises I have in mind. I haven’t really started buying or making anything to make magic happen. (Okay, I did buy some felt gnomes to hold silverware on the table, but that’s it.) One thing I have done is order two new DNA tests for my husband and I. We’ve done one in the past but I am ready for fresh and new information. Plus I need the info on my BRCA genes so I can start getting tested early for risk of breast cancer, since my mom passed away this year from it. If you don’t take your health into your hands, no one else will. Time is the most precious and magic thing on my mind this holiday. There are only so many of these holidays left to celebrate with your *young* children. There are only so many wild summers left and quiet autumns. The faster I can get Gavin more on track with his communication and awareness, the faster my husband and I can feel like both our boys are together and connected to us in a deeper way. I want that so much.

So step one for this round of trying to accomplish this is controlling the health of myself and my husband. Our kids need us to be around in order to help them thrive. I can’t wait for those tests to come in because they are the peak of getting started again and knowing our baselines. 

1. tests
2. schedule check ups, bring our test info
3. diet, exercise and supplement changes

The next step is Liam. He needs to go to vision therapy in the new year, and we need to practice math, etc. The et cetera is to enjoy being a kid. Easy enough. 

For Gavin: two main things. I want him to see an immunologist, or several of them. And I want to try autologous stem cell transplantation. So far he is seeing Immunologist #1 on January 13th. She seems to be really good and if she can’t answer all of our questions, I hope she can send us to another person who will. As we dig deeper during the year of 5, I need more real answers and less hope to’s in my book.

I read this quote recently, and I think now at 35 I am finally able to live this way:

Real growth is when you start checking and correcting yourself. Instead of blaming others, you take your power back by being responsible for yourself.

It doesn’t matter anymore how exactly Gavin got autism, or how exactly my mom got breast cancer, or how exactly my husband’s vision doesn’t allow him to live a normal life much of the time. These are all things I have researched to no end, and I hope to help others once I figure out the why’s. But right now all I can use my energy for is for fixing what I can and preventing anything worse.

It’s almost summer. My oldest will have his last days of Kindergarten next week. There will be a picnic day, movie day, signing autographs, and I am scared! I am so sad about it but also excited for him to move on, learn and grow. But for my youngest, G, I am just afraid that G will not be ready for Kindergarten on time. We decided G will go to ABA therapy full time, Monday through Friday, 9 to 3, starting in two weeks. He’ll do this all summer, and into this fall, if he seems to be happy and responding well. It’s really a lot so we may end up shortening a few of the days but we’ll see.

I just sent a message to one of the preschool teachers to let her know that we aren’t going to be able to come back. That was a message I was dreading to send. I wanted him to go back there so badly. I wanted a bigger piece of that dream of preschool and all the special moments there. It’s with tears in my eyes that I am saying: it’s done. He won’t go there again, and that’s that. This fall he will be at therapy, and next fall in 2020 he is supposed to go to Kindergarten. This next year is all about preparing him and figuring out what’s next. Inside, I am shaking. I want him to experience everything. I want to talk to him. I just want to talk to him. Without pointing, an app, without pictures.

G and I will visit the preschool this Thursday to get the picture that was on his cubby, say goodbye and give hugs. It’s the last day of school for the class he once was in. I am sure we will visit them again later in the year when G has hopefully made some huge, unbelievable milestones. Then I can cry happy tears and reconnect with them. That’s all I hope for.

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.

Today was the day. I just couldn’t see this subject in my inbox anymore. For exactly one year now, I had Google alerts set up for autism and a few other search terms relating to it. I also signed up for some newsletters, one being from the Autism Research Institute. I unsubscribed from them all today. I just need a break. Every single day I was looking through all of the news and bits of info about autism that I could handle. Until maybe I just couldn’t handle it anymore lately. The sadness from reading about how many kids are affected now, and the talk of research, research, research and ideas, ideas, ideas – yet parents can’t find doctors easily who know how to help their kids. We go through so much searching and trial and error, almost as if we have permanent blindfolds on.

I read a quote yesterday that felt exceptionally real. It was in a post in a Facebook group about trying to find the right diet, therapies and other interventions for autism and how every child reacts to changes differently.

“Healing autism is like fiddling with three dials on a radio in the dark. You don’t know what the dials are for or even what you are trying to do. But when you hit the dials just right, suddenly you hear music.”

So for the next six months, I promise myself to relax. Gavin is doing well in therapy, he is showing us new behaviors and interesting things every week. And we will be doing our first stem cell injection in April. If we hit another roadblock after that, then I’ll jump back into research.

But for now, we will continue what we have been doing and push through. We’ll focus on making Gavin listen, look and laugh. And taking him and Liam on adventures in the spring and through the summer will be the best. And we’ll be okay.

I haven’t posted in weeks now. When Gavin was in preschool I was pretty organized with this blog and keeping up with all changes, big and small. Since winter arrived, we all made it through both the gloomy, soul-searching days and the exciting, snowy days. Today I find the need to just push the words out through my fingertips and make sense of it all.

Gavin has been in ABA therapy more consistently now. Today actually starts the first day of a more solid schedule. One of his therapists left the center in December so January became an unpredictable month. Now he is back to going to ABA Monday through Thursday beginning at 9 AM and sometimes ending at noon or 3 PM. This is creating issues with his “nap cycle” as I feel like calling it. So we are dealing with that as things feel right, or wrong. The important thing is that his therapy is becoming more consistent. I know it’s all working for him when I see him clapping in the car and listening to us better.

But in other ways, he is not used to it all yet. He is scratching us at times and getting very frustrated. He wakes up in the middle of the night, sometimes almost screaming, and there’s nothing more hurtful for me right now than feeling depressed in those hours. And not just because of knowing how confused and upset Gavin feels and not knowing how to tell him it’s okay, and him resisting me holding him. It’s the overall feeling of the unknown future.

For each year that goes by, I could make a list of the different supplements we have tried, the results of blood tests we have ordered with a handful of different doctors, the notes I have of how long he slept, what he ate, and a picture of the still unsent boxes that contain urine tests and squishy gel packs that have never been frozen.

Gavin is four. Four. I cringed when it was almost time for Valentine’s Day. I knew there weren’t any special plans at the ABA center for the holiday. But I did know that at his preschool, if we was still going there, that he would come home with a paper heart and a pouch of Valentine’s. The lack of these little things crushes me inside. But lately I have to ask myself – is this important for me and our family to experience, or is it important to him? The truth is, it is not important to him. It’s selfish of me to even get sad about these things. Of course I want to experience all of these beautiful, sweet childhood moments just like I did with our oldest son. Of course I want them with Gavin too. But what is most important is getting to the bottom of everything else he is actually feeling. He is often frustrated and seems helpless. He stims and taps and hums and groans. His brain is misfiring. His immune system is overfiring. Gavin doesn’t need a pocket of Valentine’s cards, and I don’t either. We can get those Valentines when he is better and when he knows what they are. I need to help him be healthy, to be aware, and he needs more than ABA therapy. He needs a pocket of miracles.

Or an infusion of stem cells. Gavin is four and this is our year for it. I can’t wait any longer. I kept hoping that if took calcium pills for six months that he would stop poking his eyes so hard with his fingers that his eyelids flip inside out. I kept hoping that if he took fish oil and digestive enzymes and broccoli extract and silica drops and zinc picolinate and only had gluten free bread and only drank Fiji water, and gave him B12 injections, that his body would be functioning and clear and his brain would follow. It just isn’t happening. There’s also a chance that he might have PANS/PANDAS, or metal toxicity that needs detoxing and chelation, or bartonella, or lyme, or strep, or a continuous infection of some other kind, that a multitude of more expensive and stressful blood tests could find. Or we could just jump into an IV infusion of stem cells here in the US and just find out if we see any changes. Step one. Then we could get more infusions. Then if that actually miraculously works, we could look into extracting his own healing stem cells from his own bone marrow, at facilities in another country. It really sounds like another rabbit hole, but of a different kind. And this rabbit hole has the same foggy and mysterious map as all of the other things we have tried.

You cannot always wait for the perfect time, sometimes you must dare to jump.

Confession: This post is really, really late. Aah! It’s almost December but I never updated at the beginning of November.  It has been super busy and we have all been tired. The basic recap is:

1. We have been healthy all month (luckily!) and no one has been sick in our family. This is the first November like that on record. Still in disbelief that we made it. (Of course, now worried about what December holds and downing the vitamins.)
2. Our experience with our new ABA therapy center has been great so far and very timely. Gavin can start therapy on December 3.
3. The ABA center wants Gavin to do an intensive schedule Monday through Thursday, even on Fridays too eventually. This means we had to pull him out of his preschool on Tuesday and Thursday morning. Tomorrow is his last day. This was a very hard decision. I love the teachers there, just as amazing and caring people foremost! I wanted Gavin to have the same kind of experience that his brother Liam had there. The truth is, the experience is not exactly the same. I cannot expect that to happen. They welcome Gavin to come back in the spring if he has a lot of success and if the center feels that he can skip Tuesdays and Thursdays and return to school on those days. I think right now Gavin will benefit more from therapy daily than going to preschool. The teachers there and the teachers from PPS agree. They have all made me feel much better about it all. I can’t thank them enough for all they do.
4. I began this post saying that we have been tired. Gavin did have some sleeping issues throughout the month at times. I started giving him his B12 shot every night instead of every other night. That seems to have been a mistake because he did seem to be overstimulated by it. Then we received his new compounded injections with B12, folinic acid and NAC (N-Acetyl Cysteine). He has now been on a regular schedule of every other night with these injections and seems to be back to the way he was at the very beginning of November. He is calm, happy and sleeping great. Naps too. (They will end at some point, but not sure when! Let’s see how daily therapy effects him.)
5. Gavin has been babbling more than ever again (I feel like I have been able to report that a lot over the past year) and loves going to speech therapy. ABA therapy will also cause changes to our speech therapy sessions which are normally at least twice a week. Our therapist, Dani, is also an awesome person we are lucky to be working with. She says we can still squeeze in Fridays with her at least if we can, and even though she normally doesn’t schedule sessions that day.

“You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept.” – The Velveteen Rabbit

Tomorrow will be a big day with a lot of emotions. If Gavin is ready, I am. 🙂

Autism Mom

This is one of the first sites I found a while back but sadly she will not be blogging any longer. I hope to read through all of the posts when I have free time. I love her gentle and calming writing style and I am sure many, many people will miss new posts from Elizabeth. One of her golden passages that I can’t forget: “Some days it takes everything I have to be patient. Some days I fail, and the shouting goes both ways. I am not very happy with myself on those days – I am the grown-up, I should do better and set the example. I sit back and think about what I could do differently. Maybe when he gets home from school he needs more of a break. Maybe we could schedule the putting away of the lunchbox and the chore for later, give him more time to decompress. Maybe that would ease his stress and reduce the arguing. Sometimes it is my failures that can be the best teachers. As long as I keep thinking and learning, I can keep supporting him every step of the way.”

Finding Cooper’s Voice

I think a lot of people know about Cooper’s mom, Kate, and their family’s journey. They went viral multiple times after all! Her blog is a good starting point to read through if you are just beginning the autism journey. She helps us all stay grounded through her writing which comes from her heart. A quote from Kate: “There is an element of grief that goes into raising a child with special needs. That statement offends some people while parents of kiddos with needs are nodding their heads. I was pregnant just like my friends. I pictured the future and raising my sweet little baby. Never once did I factor in having a child with severe needs. I pictured baseball games, funny conversations and bike riding — not doctor’s offices, IEP’s and communication devices. His diagnosis was shocking to me. I felt the need to grieve the little boy that I had pictured in order to accept the life I was given. My advice to parents is to give yourself time to accept your child’s diagnosis. You are human. Cut yourself some slack. And then you will be able to love the child that you have in an even stronger way.”

The Autism Dad

Some of the most useful and thought provoking posts I’ve read have been from an autism dad, not a mom! Rob’s site is full of thoughts and questions we have all had at some point. It’s comforting to find another person on the same page. Also we both have a son named Gavin, so that was interesting! From Rob: ” While reading, you will bear witness to all the raw emotions I’ve experienced along the way. You’ll experience our true happiness and utter heartbreak as life presents us with things that no child should ever have to face, or any family has to deal with. It’s raw, visceral, transparent and brutally honest. It’s our real-life story and we don’t hide from it. For almost a decade, people from across the globe have found comfort and solace in my thoughts because they put words to what they’ve been feeling.”