And really my only excuse is a poor one. I've been exhausted.
SO much has happened. We were on the road and didn't have internet access for a while. Since then life has just been so chaotic, busy, and exhausting. I just haven't had the time or energy, and my vision and hearing are still pretty challenged, which makes everything harder. But let me start at the beginning. There has been some good and bad and a lot overwhelming, but at least there's good, right?
We moved about 4 hours away from our last house- the one that was falling apart. We moved into the most perfect house for our family. It is the nicest house we have ever lived in. It is clean and modern, and I don't have to worry about the quality of the house affecting our son's lungs. It is in a bigger city, which looks like it will give our son better access to services he needs to succeed. It is close to hospitals and doctors and therapists, but still close to parks and beaches and museums. It is somewhere we can settle and call home. The only downside is that we have to keep our house sealed- staying inside with closed windows and doors- on certain days when the air quality is too poor for Layne's lungs now that we are in the city. So far with the warm weather, that has been about twice a week. Some days that means we are stuck inside the house as it rises to over 100F without being able to air it out- we are ready for the fall! The new house is also pretty accessible for when I am in my wheelchair. Even better though.... I have been walking, with a cane, for the majority of the time for about three weeks now! I have still had some time in my wheelchair, but I have also had a fair share of time walking. It is wonderful, and I can't wait to get back out on the trails soon. Baby steps.
|Front door of our new home|
|Front door of our new home|
|Soft light in our kitchen at night|
|A tiny library nook|
|Here are all of our possessions moving into this house|
Since we moved into this house, we had to sell the tiny house. There is nowhere to keep it at this house, and it was not practical for us to finish it anyways with all that we have going on all the time. It went to a lovely gal that was very sweet to us. She was excited about it. When she heard our story about it, she asked me to write up a page about how I wanted to finish it and she would try to finish it the way had I dreamed as well as she could. She seemed like someone I would be friends with, had similar ideals, and even left a us a little gift on the porch the next day. I'm happy knowing it will go to someone who will appreciate it.
|The last day owning our tiny house *sniffle*|
We moved out of our old house at the end of June, but weren't able to move in right away to the new house. So we thought, 'we have always wanted to live on the road- here's our chance!- let's use this weird transition time to live on the road for the summer'. We even built this awesome bed to convert our truck to a camper. It has a raised platform for sleeping and a storage area underneath for everything you need for travelling. We were still pretty scrunched, however, because of the piles of medications and adaptive equipment. We are constantly buried in this stuff. I have a backpack for my needs, a backpack for Layne's needs, a cane, and a wheelchair- and that's just to leave the house anywhere, even the grocery store! To leave for the whole summer, we also have boxes of nutrition supplies, respiratory supplies and machines, boxes of medications, huge folders of medical paperwork, sensory equipment, and even a walker for Layne. I mean the amount of stuff that we need on a daily basis to make life just functional is phenomenal. So different from when I was a teenager and I would just throw my wallet and phone in my back pockets and hop in the car, on my way to anywhere I pleased. In terms of everything else, we are definitely minimalists, but we are so weighed down with medial supplies it's crazy. Anyways, exciting summer travels!....
|Building a truck conversion Step 1: Build top and bottom frame|
|Step 2: Build frame sides to make a box|
|Step 3: Add a platform|
|It can be removed, if needed.|
|A full size spare and jack fit underneath, then in the front, three drawers- one for each of us- and a little space for extras like cooking and emergency supplies.|
|How fun is it to have this in the back? It's like a treehouse in the truck!|
No. Layne totally shut down. It was horrible. I knew there would be challenges. Everything in life has challenges when you have to fit your disabilities into the picture. But I did not expect this. He has always been a challenging kid. He is on the extreme end of sensory sensitivity. When he is feeling healthy and comfortable, he can be so sweet and so cooperative. When he is overwhelmed though, he can get pretty wicked. My goodness. I have NEVER seen him shut down like he did on our travels. He is normally quite talkative to my husband and I, but he became non-verbal. All we could get out of him was grunts and screams for a little bit. He had a lot of difficulty walking. He was so stressed that on a few days, he was unable to really walk on his own. He would just fall every few steps, walk drunkenly, and ask to be carried. That part really worried me. We rented a walker for his size for when this might happen in the future, but he became to fixated on the walker that it was more of a problem than a help, so far at least. And he became aggressive. Being aggressive is his last ditch effort, his rock bottom, his only way to interact once he has reached that point of no return. We normally see this each day during the activities that overwhelm him, like diaper changes or getting dressed. He can't stand the clothes moving over his skin or our hands on him to dress him, and it is so overwhelming that he lashes out and hurts us or himself. But this aggressive behavior was lasting all day. Each time that we tried to interact with him in any way, ways that we thought would normally be fun or in ways that were necessary (like diapers, feeding, etc.) or in ways that were discipline, every time was met with aggression. He even started to be aggressive to people other than my husband and I, which is unusual. It was clear that being out of routine was so entirely overwhelming to him that it was painful. On top of that, he couldn't fall asleep in these foreign surroundings, even next to Mama and Dad. And anyone who has had a child with a sensory disorder knows that sleep deprivation is the worst. If they don't get enough sleep, that alone can cause negative behavior. And on top of that, he has had lots of doctors' appointments and full days at Children's.
After just two weeks, we were desperate. Absolutely desperate. So we made arrangements to move in right away. Dealing with a child that is basically in a sensory meltdown 24/7 is so exhausting for all parties. Additionally, stress, lack of sleep, and being physically overworked makes me more sick. So returns the fever that I finally had under control, along with the intense joint pain. It's a snowball effect. We just couldn't do it anymore. We can handle a lot, and we generally have different ideas than most Americans in what we want in life- and living on the road is one of those things that I dreamed about since I was a little girl, in fact as far back as I can remember- and we still wanted out. Maybe someday he can handle travelling. For now, it is just painful.
So about all of those doctors' appointments? It has been an intense month for us. Lots of diagnoses. Lots of new things, new routines, a new normal. So much has changed. We were already living lives with a completely different normal from everyone else, but now it has gotten even more so. It's not really bad, just different. Once everything settles, and we all get used to it, life should actually be better! We are finally getting answers and help to some of these huge medical issues.
First off, respiratory. Layne has been diagnosed with chronic lung disease. This is due to how long he was intubated (which is total life support, meaning he was unable to breathe so a machine breathed for him) as a baby and how long he required respiratory support. He was intubated for really quite a long time comparatively. The constant pressure on his lungs damaged his lungs. Normal healthy lungs are soft, but the pressure caused his lungs to become stiff. Also, we saw blood coming up his tubes, so obviously there are some issues there. He also has fairly severe asthma, which we are treating with steroids in a nebulizer a few times a day. I love the nebulizer. It has made such a difference so far. He has had much less concerning moments/days than before the nebulizer. He will also be getting further studies evaluating his airway. He may have a damaged airway that has become permanently restricted from the ventilator (intubation). This smaller airway would explain the respiratory emergencies and some other issues he has had.
He finally got real help with his aspiration issue. This is a huge step toward helping him be healthy. The pulmonologist heard fluid in his lungs. This was kind of disappointing to me, because we are so avidly protective of him and his diet. We were doing all we could with what we had available, and we were still unable to protect his lungs. It felt like I failed. It was also a good thing, because it was a bigger push to get him the help he needed. We now have to thicken everything that he drinks and anything that he eats that is fluid-like. That also means nothing that can melt, so no ice, no ice cream (non-dairy even), etc., which means he misses out on some summer fun. But at least it keeps him healthy. We have used frozen berries and fruits instead, which he loves anyways! We call his thickener his 'magic potion', which has made it exciting for him.
There is another perk to having medical nutrition supplies- we finally found a soy protein drink that can help put some meat on his bones. He is small. Not on the growth chart for his age small. He is small in both weight and height, but especially weight. Finding clothes that fit him is really hard. So hard that I am considering making him some custom clothes or somehow altering what is available. He is so small that 18 months pants still don't stay up on their own on him. At three and a half years old. But they are too short now. And his head is too big for most shirts that would otherwise fit his small torso. Clothes also need to be very simple to put on and take off due to the intense struggle that is dressing him with his sensory challenges. So he is exclusively in overalls, but that hasn't been that great of a solution either. Overalls for his size are made with buttons for easy access for diaper changes. Well I cannot keep the dang things shut! I don't know why, but they will not stay shut. And it's not because he is too chubby for them, because there is a lot of room in there. This makes me cringe in public as his mother. He is always running around with his clothes half off and usually having a meltdown on top of that. The next stage will be to sew that part of all his overalls shut. There have been such an enormous amount of projects in this new house to make the house safe and suitable for Layne that it may be a while until I can get to that one.
|Soy protein shake to bulk up our kid|
Layne has also been officially diagnosed with autism. He was diagnosed at one of the best facilities in WA for autism. So this is a very respectable decision and one that was not made lightly. The process was very involved. The doctor said that he was tricky to diagnose. He has some strengths, but also has some challenges. There were even some quirks that we thought was just something he does that the doctor brought up as being common to children with autism. We would have never known that otherwise. He was diagnosed with autism disorder (a type of autism). He is not considered high functioning or low functioning, but somewhere in between. As he has grown over the last six months or so, we have seen the concerning parts of his autism growing into a bigger problem. This diagnosis is the key to getting him the help he needs.
I have read and heard many parents' reactions to an autism diagnosis. That it is overwhelming, shocking maybe, that there is grieving. But for us, it was an enormous relief. It meant there is a biological reason behind his difficulties and now we could get help. We had already been through the grieving. We already know his life will be different than we may have imagined it. We already accepted that it's okay if he doesn't do anything 'normal' people do in their lives. Our lives hadn't turned out 'normal' either. The doctor said at one point something like, 'are you okay? I know this is a lot to take in, a lot to process, and a lot of information.' But neither of us felt that way. We looked at each other for confirmation, then at her, and said 'no this is normal for us, this is a relief'. It is so normal for us to leave doctors' appointments a few times a month with new diagnoses, new tasks, new information to absorb. This is not meant to belittle or dismiss the reactions of other parents of children with autism. We are just so used to it. We are used to diagnoses and our own normal. We just want to know what we can do to help him. We are willing to do anything for him. That's just what we do. It's how our lives have been since before he was even born. In that fateful hospital room in the days before he was born, I asked for him to be saved, even if that meant to sacrifice myself. It's just what I do as his Mama. It's what we do as a family.
The difficulty is setting up all of the care he needs. The autism doctor said that he will need between 25-35 hours of therapy per week. That's a full time job. Literally. I cannot wait to get him set up with therapies, because it does help. It's a lot of work, but even so, it is less work than caring for him when he has no therapy. Especially since we just moved. Our family as a whole easily has more than 25 doctors. Seriously. So I need to establish care and the myriad of paperwork and hoop jumping that establishing care with that many doctors requires. Once we finally have everything established and settled though, this area will hopefully offer him better options than he had where we lived before. So far this has been a very difficult process, one that I have put many frustrating hours into so far. There are long waitlists here. ABA therapy, the critical behavior therapy for helping children with autism, has waitlists of years. Speech therapy has a long waitlist here too. We even had a wait for a pediatrician! This is a bit disappointing.
He also saw more neurologists. The most recent of which gave us more home health equipment and help with services. The doctor did not think that Layne had cerebral palsy and felt that we could drop that for now. She felt his difficulty in walking and balance is due to sensory sensitivity. Basically, the idea is that he becomes so overwhelmed by sensory input that he cannot focus on walking. Sometimes to the point of being unable to walk, like during our travels this month. He also has trouble with his vision, which contributes to his difficulties. She thinks he gets tired so easily due to his respiratory difficulties. He is generally unable to be active for the whole time period of physical therapy, and he tires much more quickly than other children his age, requiring breaks often while playing. I know if you can't breathe well, it does make you tired. But he gets really tired. He says he is tired all the time, and can't walk very far. It seems to be getting worse, and he doesn't want to walk anymore- even on trails that he used to love. He usually ends up saying he is too tired after walking only a short distance and his walk is obviously different than other children. He looks wobbly, like a drunken cartoon character or a child just learning to walk still. I can't help but feel like we are missing something still. I get feedback from everyone else that he works with that he walks strangely and tires too easily. It just seems like there is something to his gross motor deficits and the obvious difference in his walk. For now, I will watch it. We did get some ideas on therapies and ways we can support him and help him continue to progress. But the best part is that we finally get to order a specialized car seat that will help keep him breathing when he falls asleep in the car! This is awesome. Unless it happens to you, no one knows how terrifying it is to have your baby stop breathing, especially in an environment like the car where you can't immediately help them. We have been through breathing emergencies so many times. Ones where he started back up on his own again, and others (but not in the car) where he needed emergency help before starting up again. This car seat will hopefully be the answer to stopping this in the car. The problem is sort of unusual and just the perfect storm. He does not have enough strength to hold himself up in the car seat when he falls asleep. Then his saliva pools up, which he then aspirates. Since he is sleeping he doesn't correct it right away and it stops him breathing for a period. So scary. This car seat should tilt him back like a little baby should be since his strength is not up to his age level. Then hopefully that will keep his head in place in a way that is safer.
Since we have settled into this house, Layne has settled a little too, but we still have a long long way to go. He doesn't like to be touched. Most of the time if we try to hug him, he says 'don't touch me'. Any kind of tactile input is overwhelming to him. We did get a compression suit that covers more of him, which has helped significantly. The day we put his new compression suit on him he started talking again. It's that good. He is back to talking consistently in the house. He is still very overwhelmed by any and all sensory input all day. We are not really able to go anywhere, grocery shopping or fun family outings, yet without quickly having a meltdown or aggression. I do so hope that starting some of his therapies soon and getting a clear routine and homeschool started up will help him to be able to deal with some of his sensory struggles.
As far as myself, I have been walking and functioning much better. I am walking with a cane and still have a lot of struggles with vision and hearing. There are classes of hearing and my hearing tests one class above being considered clinically deaf. My hearing aids help quite a lot and make it so I can hold a conversation, but I still have trouble understanding many words despite being able to hear them. The phone is tough. I am also unable to drive due to my vision. I think the best improvement is due to a bed my Dad gave us. He had upgraded and offered us his older one. Our bed was probably one of the worst beds anyone in the developed world has slept on. My husband's side was so terrible that there were giant craters where there was no more mattress and he had filled that area in with blankets. We joked that every morning I looked like Maleficent when she wakes up after her wings have been cut off (If you have not seen Maleficent, do. It is one of my favorite movies). I was unable to move in the morning for an hour or two, because it was so painful that my body simply refused. Now on many mornings, I can just... get out of bed. Just like that. It is a bed that you can adjust the elevation of your head and feet, like a hospital bed, but more comfortable. Being able to elevate my head and feet so that my hips aren't laying flat has helped a lot.
During this time, I also had a birthday. My actual birthday was not much fun. We spent the entire day at Children's hospital. Layne was struggling a lot that day, especially during and after the last appointment. We were stuck in traffic for hours. My birthday present to myself was a new cane- for my 27th birthday- since mine had broken. At the end of the day, I just wanted a cake, but when I got to the store it was too late and the bakery was closed. A week later, my Dad, step-mom, and sister came over, and we all had cake (that one I wanted) and vegan lasagna though. We had a good visit despite the fact that I cut my thumb pretty badly making said lasagna, which even my Dad said was good (the lasagna, not the cut).
|Isn't it one of the greatest cakes you have ever seen? It's so adorable that I ended up eating two (well, I shared them!).|
We took Layne to a sensory friendly movie. It was his first theater experience. And it was actually quite special to us. Sensory friendly movies are movies played in a theater, but the environment is a little different. They leave the lights on and turn the volume down. Also, since there are other kids with special needs there, no one is upset if your child can't sit still or keep quiet. The way he behaved was probably not fit for a regular movie, but he watched the whole movie and acted much better than we expected. It was special to us, and we are thankful sensory friendly events exist. If you would like to find such an event near you, you may need to do a little digging, but they are out there. AMC theaters does these once a month and often times local museums do these as well. The Pacific Science Center and the Hands on Children's Museum both do sensory events. We have not yet brought Layne to either of these museums or AMC for sensory events, but intend to in the future.
|Layne standing proudly in front of the movie poster for "Minions", which we saw as a sensory movie, his first in the theater. He loved it, and we were so happy to see him in a situation that worked well for him.|
|Layne's bed- partly done- but usable. The open part is a bookshelf.|
So overall...? It is mostly tiring right now, but we can see things are going to get better. Good things on the horizon!
Now of course since I haven't written a blog post in so long, I have literally taken several hundred photos in that time. So I will put up a few photo blog posts soon. These for now, are photos of us exploring our new home.....
|Playing in the rocks near the driveway- making his own makeshift rice bin for sensory input that is calming.|
|There is an open field behind our house that we play in.|
|He has learned how to ride his trike! And he is a little obsessed with it.|
|He was a little too obsessed with the walker. He took to it right away, but we have put it away.|
|He really likes Captain Picard.|
|I know it's a little blurry, but come on!|
|Layne and I made a box into a car. Layne has the most amazing imagination I have ever witnessed.|
|A car-box is a good place to mellow out be stimulus free.|
|Do you see the resemblance? Was Lola a dragon in a past life?|
|One of the many taking advantage of Layne's sensory seed bin.|
|Adorable baby ducks!|
|Layne really loves Mr. Peabody and Sherman and Rocky and Bullwinkle. We found this little pair on our travels. They are reserved just for "dragon mask" time, when he also gets to watch an episode featuring them.|
|I made some bonnets, because why not? One was a little too small and Layne instantly claimed it as his own. He was just a bit too adorable in it.|