Sleep Issues

From the day we brought little Linus home, sleep has been an issue. When he was an infant we would work for a solid 2 hours to get 30 minutes of sleep out of him, only to have him wake again and we would start the process over. He barely slept. Oh, I don't mean the typical baby issues of sleeping a bit less than their counterparts. I mean he BARELY slept. I don't know how you can survive off such little sleep. I should know, I slept less because I had to get to sleep after he went to sleep.

It moved to the point he couldn't sleep without touching me. Not Daddy, not big brother, not anyone else in the family or outside the family ... me. I wore him during the day a lot, just to give my arms a break.

We finally moved to sleeping in our bed even if he wasn't touching me. I worked and worked with him, trying to teach him to sleep on his own.

We put him in his brother's room, thinking company would help.

Nope.

We put him in his own room thinking he need to be alone.

Nope.

We put him in our room to go to sleep and then carried him into his own bed.

Nope.

We tried it all. We bought fun bed tents, sleeping bags, pillows, toys, no toys, special books, fun sheets, anything and everything to help him sleep in his bed.

His anxiety always won out.

We gave up for quite a while and just said sleep in our room. We were tired after years of trying. It wasn't getting us anywhere and I think we all just needed a break.

We worked on the anxiety and learned what caused a lot of it. We started to heal that. That was hard since it wasn't from a trauma, experience, or other situation where traditional therapies or meds could help. It was from food and that's hard to even diagnose, much less treat.

Finally we decided it was time to try again. But we knew just saying "stay in your room" would not work and we would doom ourselves to failure. We weren't sure how to proceed.

One morning we woke up to find our older son had pulled one of our camping cots out and had slept in the living room. He was just uncomfortable in his bed the night before, not sure why, and came up with this solution. It also gave me an idea for Linus.

I asked him if he wanted to sleep in the living room with big brother on camping cots. I told him we could work on getting him into his own room this way. I also offered a reward. I told him I would pay him $1/night for 7 nights if he could sleep outside of our room. He was all for it and big brother thought it was going to be a fun week of sleeping on cots in the living room. Win-win. We told him our bed was available if he needed it, but to try his best, that's all we asked.

Night one came and went ... no Linus in our bed.

Night two came and went ... no Linus in our bed.

Night three, four, and five, same outcome.

On night six I suggested maybe a bonus if he slept in his own bed. I told him $2 instead of $1 if he did this. He tried. He couldn't. I told him no biggie. He still slept in the living room so he got his $1.

Last night was night seven. He asked if the $2 deal was still offered for sleeping in his own bed. I told him it was. He said he wanted another chance. I think he just needed that extra day to really wrap his mind around this new change of bed location. I pulled the cots into the living room, but kept them folded against the wall. He could open them up if he needed to and sleep in there. He likes a safety net.

I will just say this, Both boys are sleeping and I am in the living room typing this post. Yep, he was successful and I am out $8. It's the best $8 I ever spent.

He doesn't know it, but the next offer will be different. He will get $1/night for 7 nights if he sleeps in his own room this next week. After that we will move to $1/2 nights, and then $2 for the whole week. We have used this type of reinforcement before with him. It's been successful when he's ready but still having a hard time with the transition. When things get uncomfortable, the temptation becomes strong, he has something tangible to help him move past it.

I am hoping for a good report when he wakes up in an hour or so.

Sleep Study Part 2

He sleeps.

My kids don't.

We finally threw up our hands and had a sleep study and EEG. Now THAT was an experience. My son slept as usual. Only parents of kids with special needs knows the fear that this will be the one time he sleeps (acts) like every typical child. But, as far as I know his sleep was just like it is when we are at home.

Now we wait. The report from the doctor won't be ready for 5 - 10 business days. Yeah, I am very much hoping for 5 rather than 10.

Sleep and a Study

See that picture above? Yeah, that doesn't happen at our house without a lot of work. It hasn't happened at our house for years. Add in the issues once the kids finally fall asleep (light sleep instead of deep, sleep talking, wild movements during sleep, snoring, etc) and sleep is a dream goal (no pun intended).

Our sons are finally healthy enough to start addressing this issue. So, I went to our doctor and asked about an EEG to figure this out with our older son. Younger son will come next. He quickly agreed and just a few days later we are ready for our sleep study and overnight EEG. Yes, they are different things. A sleep study hooks up monitors that measure such things as O2 levels, CO2 levels, leg and arm movements, heart rate, etc. The EEG will look at what his brain is doing during the time he goes to sleep and while he's sleeping. I don't know if we will find any reasons with this type of test for why he isn't sleeping well, but I pray if there is a reason we find it on the test. He needs sleep. He needs deep quality sleep. He needs to be rested. How can you heal, grow, thrive when you are exhausted? Simple answer, you can't.

So, if you have any prayer time today, I would love for you to use some of it for us to find answers to our son's sleep issues.

Sleep - It's a Good Thing

From here

Sleep, it's a huge issue in our home. Kids don't get it so neither do the parents. I remember hearing parents gripe about a kid not sleeping well. You hear stories of "one more glass of water", "a few more pages, Daddy" and the like and you smile. You laugh inside knowing it's a part of growing up.

Yeah, that's not what I mean at all.

Picture a child so anxious about night time that he will beg, plead, and beg more to not sleep alone. Imagine a child so revved up that he runs for hours in his room until he finally slows down at 1am, napping for an hour or two (and I do mean light sleep), waking up, stimming some more, going back to sleep lightly for two hours, and continuing like this until one time he wakes up, sees sunlight outside, and is out of his room at 6am.

I mean sleep issues!

There are ways to help these issues. The problem is, many people want a one size fits all approach. I honestly have people ask me all the time, "what are you using for him and tell me the exact dose".

Here's the issue with that. 1) How big is your child compared to mine? If mine is 65lbs and your child is 32, that's a huge difference in weight and what my child can take might harm your child. 2) What are your child's reasons for not sleeping? What is causing my child to stay awake might not be what causes your child not to sleep. Did you know the reason my older son doesn't sleep is very different than why our younger son doesn't sleep? Same result, different mechanisms in the body.

Instead, I tell the person to call our doctor, or give them the names of other similar doctors who can help them figure out what's going on in their little one's body.

Having said that, this post is to also share our newest possible success in the sleep realm. Our younger son has a lot of anxiety tied to bedtime. Who am I kidding? He has a lot of anxiety tied to life in general. Our doctor has figured out a lot of the reasons why and we are starting new protocols slowly. We have only started two items and one is something we have used before but his body is deficient so he's on it again. When we start supplements, I always start one at a time. This let's me know what's working, what he might react to, and what he might be having an odd side effect with so I can tell the doctor.

Here's what we have so far:

• Massage - At least once a day, moving up to twice a day, I massage our son's back, calves, and feet. I use Ava Anderson's Dream Cream with two drops of Lavender essential oil mixed in. He loves it. He has always loved massages. If I only do it once during the day, I make sure that one time is after supper. If I do it twice (which we are moving to) then I do it in the morning after breakfast but before school and then before bedtime. I take my time and allow his muscles the time they need to really relax. I start on the shoulder area of the back so he will start to breath in the oils and that will help relax. 
• L-Glutamine - Our doctor has us giving him 2,500 mg of L-Glutamine from Klaire Labs even evening before bed. I give it to him after his massage and just before he brushes his teeth. We use the powered form and put it in some pear juice (just enough for the powder to fully dissolve as there is no taste to the supplement). 

We have other items we will be adding, but this is where we are since meeting with our doctor. Here is what we have seen so far:

• A child who is calmer and more able to move through stressful situations. 
• Monday - it took our son 2 1/2 hours to fall asleep with quite a bit of anxiety and being in his room. 
• Tuesday - it took our son 1 hour 16 minutes to fall asleep in his room with my aid and medium levels of anxiety (reading stories, singing a lot of gospel songs, praying with him, etc).
• Wednesday - it took him 40 minutes to fall asleep in our room with no anxiety. 
• Thursday - he woke up and came to me asking if tonight he could sleep in his own room with me helping him a bit with a story and song. He said he thinks he's ready to move in there now. 

Why this is big: He has always had so much anxiety with sleep that even suggesting he sleep in his room would throw him into a massive panic that was honestly fear based. For him to come to us and ask to sleep in his own room is a huge, huge step. He also takes a very long time to fall asleep, even if we lay down with him. The fastest way to get him to sleep is for us to be in there, but even that is a long journey. For him to fall asleep in 40 minutes, that's a big deal. 

Our son, who has had sleep issues since he was a week old, is starting to sleep. I pray this is his answer. God lead us to an awesome doctor who is, what I would classify as brilliant. He saw our two kids issues and knew how to help. He said what we were doing for our younger son would happen quickly and I was afraid to have hope. I am starting to let go of that fear and see the hope that is out there. 

If you are a parent and feel like giving up, or have given up, don't. There is hope. It might not happen overnight. We have been trying for sleep for 7 1/2 years. But it can happen. Pray hard, seek His face, and look for doctors who will listen and know what to do once they understand your child's issues. 

If you need a place to start in finding doctors, let me suggest the two websites below. You can find one closer to you. You might have to drive a bit, but ask about phone and Skype appointments. Many will do that for those who aren't local.

Defeat Autism Now - don't let the name fool you. They are biomed doctors and can help much, much more than Autism. 

MAPS - the newer and very up-to-date people out there. 

Stand strong, parents. You can win this war. 

*Most of the links in this post are not affiliate links. The only one that I am affiliated with is the link to Ava Anderson. I receive nothing if you click the link, only if you make a purchase. You will not pay more for the item, but I do receive commission on anything purchased. 

Catching Up

Sorry I was gone a few days. Being Thanksgiving week, having a nasty storm, and crazy doctor appointments, and it made for me missing being here.

We traveled to my Mom's for the holidays and came home the Friday after Turkey Day in order to have a day of rest before going to my in-laws on Sunday to celebrate with them. We got a call Saturday morning that, due to the rain, the road to my sister-in-law's was flooded and there was no way we could get in and the day was canceled. Sigh.

Sunday evening we packed up and went to my Mom's again because she's very close to our sons biomedical doctor. It takes us 2 hours to get to her home and, since our appointment was at 9:30am the next day, we didn't want to get up before sunrise, drive to her home, drop off the kids, and then head to the doctor's office in time to make the appointment.

From here

The day of our appointment came and I was excited. I love our doctor. He's so kind, warm, and smart, smart, smart. I mean, he makes smart people look mildly intelligent. I went in with my notebook of test results (I always take them with me so I can refer to them as he speaks and make notes on them), a spiral, and a few pens (you never know if one might die and I take a lot of notes when he's chatting). We sat down for what would be a 2 1/2 hour long chat. I didn't realize he had blocked off so much time for us.

The Good:

• We have a whole new protocol.
• He saw our sons issues very clearly.
• He knew what to do about them. 
• He thinks he knows why our younger son won't sleep alone at night due to night time anxiety.
• He thinks he has identified our younger son's eating issue.
• He saw where our other doctor lacked in testing in order to get a full picture on our older son. 
• He saw where other doctors had made mistakes in what they thought the issues were in a few areas and got us on the right path. 

The Bad:

• Melatonin is now in the trash. A major sleep issue we were having was being caused by a side effect of Melatonin. We caused what we were fighting. I mean, we didn't know, we were told to use it, but it was not a good thing for our younger son. 
• The frustration level we had at being misdirected for so long by other doctors was high. But we let that go because it does no good to anyone. 
• We have a blood test that needs to happen for our younger son. Oh, gee, how I look forward to that... (read sarcasm)
• I have stool sample to collect from our older son, the kid who never poops. Still waiting. 
• SLEEP! We have none. Since pulling the Melatonin the kids aren't sleeping. We have something new on board, but it will take up to two weeks to see results. So I am working each night to get our younger son to sleep and just waiting out our older son. This means I am up very late (1am or so) and then getting up early because my younger son gets up early. Come on 14 days!!!

And now I am back. I am not sure how much mental clarity I have, so if my posts make no sense, just keep reading, shake your head in pity for me, and know in 14 days it will hopefully go back to normal. 

Talk soon

No, Really, it's Therapeutic

We have a young son who does not like to sleep alone at night. I mean he has actual anxiety tied to sleeping alone. I don't know why. We have always tried to put our kids to sleep in their own rooms after the infancy stage. He just has never handled it well. But, since he was 2 1/2 days old sleep has been an issue for him, so maybe there's something there.

He started in our bed. We got beat up since he's a wild sleeper. 

We bought a larger bed. 

We were both sleeping on our sides to give him enough space to move around. We considered an even larger bed, but this one is brand new and who can afford to keep doing that. 

We bought a cot with a small mattress on it. We put his cot next to our bed so he was part of our sleeping arrangement but not in the bed. He loved it. 

We really want him in his own room. We have tried everything. 

We offered bribes, even big bribes of big toys and such and he would rather sleep in our room than go for a week or month and get something fun. 

We tried just forcing it. Oh, yeah, that was a horrible few days without any sleep. 

We gave up. 

Until Sunday afternoon. 

We got this. 

Yes, he is adorable. 

Yes, he is cute. 

Yes, he is a lot of work. 

Yes, we said we didn't want any inside pets. 

Yes, he is an inside pet. 

Yes, we all just go gooey over him. 

But, really, it's therapeutic. 

You see, we are making this our son's pet. He named him, picked him out, and he sleeps in his room with him. He doesn't get to sleep with him if our son chooses to sleep in our room, only if he decides to sleep in his own room. So far we are 3 for 4 in him sleeping in his own room. That's the most we have had in a single week ever. We told our son that, for a while, he could sleep in our room one day each week. In a few weeks we will move to one day every two weeks, then three, and so on. 

We are also changing up his room. We moved things around, are adding fun posters to his walls, and making it how he wants it. When life hands you a curve like this, you have to be flexible and think outside the box. He's not like our older son. We could tell him, "you are fine, you are safe, we are here, go to bed, we love you, goodnight" and he would trot off to be content and happy. Nope, logic and reassurance don't work for our younger son. So, we are taking it one day at a time and celebrating even the smallest successes. 

Not to mention, that little cat is so cute. 

Talk soon.