Thursday, June 18, 2015


I don't know if I've mentioned J has not only been diagnosed with Autism, FAS and FDS, but also epilepsy/seizure disorder, migraines, and cluster headaches. We also discovered, thru an overnight oxymeter test that his 02 sats drop below 88 when he is sleeping at night, so it is recommended that he sleep with oxygen on at night. We are still working on getting him use to wearing the mask all night long. (sensory issues). Frequently, he will be sound asleep, or almost asleep, and get woke up with a headache. That happened last night.

I don't think he had quite fallen totally asleep when he hollered to me. His head was hurting. We got the oxygen on him and I waited by his bed. Sometimes the oxygen calms him and relieves the headache quite quickly. That's how we distinguish between cluster headaches & migraines. Oxygen stops the cluster headaches. I think there was more going on last night. He kept saying he felt funny and dizzy. That is when I go on high alert, watching for seizure activity. He stayed responsive to me the whole time, so that is good. But then he started twitching. Now, he can be pretty good at faking things sometimes (we are working on that), so I have to really pay attention to tell if he is faking it or it is uncontrollable. After a few minutes I determined he was not faking. I called John down to watch, and possibly give him a blessing. John watched for about 60 seconds and said I had better take him into the hospital. We try very hard not to be paranoid parents, but once you have witnessed just one of his seizures, you would understand. I don't know if I've mentioned before that his seizures are not like normal ones you usually see people having. And, they don't just last for a few minutes. They will last anywhere from 45 minutes to an hour and a half. Of course, we cannot allow that to happen. We have to have them stopped within 10-15 minutes max. So--that is why we are hyper-vigilant. 

We got J out to the car. I tried taking his portable oxygen tank with us but couldn't get the regulator on right. So frustrating! We headed in anyway. Thankfully, we got lucky and got good staff in the ER this time. Last time we were in I kind of felt like the dr thought I was being an over paranoid mother & there was nothing really wrong with my son. This time they were so sweet and understanding and so good to J. I am learning that one of the first things I tell them is that he is Autistic and has a hard time verbalizing exactly what is wrong. They still were clueless as to what was happening with him. They run a quick EKG test & his heart tested out great. They did some blood work, gave him a blanket and an ice pack (he first said he was freezing, then 30 seconds later his head was so hot). The dr ordered a small dose of valium to give him to calm him down. I cannot tell you how much he HATES shots! He just knew the nurse hit a bone when she gave him the shot in his behind. (not likely). It took a few minutes for the valium to really kick in, but I saw him start to relax. About 10 minutes later he went from crying to hysterically giggling in about 30 seconds. Cracked me up! Anyway, after about 2 hours in there, they sent us home with a pain pill in my pocket, in case it happens again. As I lay in bed, after getting him settled and was thinking about it, I wonder if he is having panic attacks when his head starts hurting. They told me if he doesn't keep breathing normal (which he doesn't), the hyperventilating can cause chest-like pains. That made sense to me. I think with each visit, I am able to gather little snippets of information to help in the understanding department a little bit more. What a process! Thankfully, we are scheduled to see his Neurologist at Primary Children's tomorrow morning. Hopefully, we can piece together all this information and see if he can shed a little more light on what is going on with this sweet boy. One or two normal days would be so lovely to have, but I know it is wishful thinking. 

That was just the evening activities we got to enjoy. All day yesterday, J had been looking forward to his HI worker coming so he could go swimming at the lake. He had his weekly appointment with the dermatologist to treat the warts on his thumb. They are very stubborn and are taking quite a while to go away. Once they are treated, they need to stay wrapped for 24 hours. While we were in the office, I realized he would not be able to go swimming. We had an all out crying fit in the exam room. The dr is also a counselor in our bishopric in our ward. He got a front row seat to view the festivities. Again, so frustrating! The fit pretty much lasted thru the dr visit, all the way home, and for the next 45 minutes until the HI worker got here. We were trying to convince him of other things to do when my visiting teachers showed up in the middle of it all. At that point I just wanted to curl up in a ball on my bed and cry. I knew that wasn't an option tho, so I sucked it up, and continued on. We were finally able to get him out the door, with extensive bribery, and I had a short visit with my VT's. After they left, I finished up some projects I was working on, while enjoying the quiet time and listening to some piano guys on youtube. 

That was my day. How was yours?  :D

BTW-This was our third ER visit in a month. I don't like those statistics.

Tuesday, June 16, 2015


Today J got to go with John & the Young Men and Young Women of our ward to the Logan Temple to do baptisms for the dead. Our Idaho Falls Temple is closed until October of 2016 for renovations. We feel this will be a great opportunity for the youth to visit other temples and to realize how blessed we really are to have a temple only 30 minutes away. Now, having our temple closed, the nearest one is Rexburg, an hour's drive away. Because of it's being next to BYU-Idaho, it is so busy they will not take appointments. It is just a come-and-take-a-chance-you-won't-wait-for-hours thing. So, the leaders think it is a great opportunity to visit other temples. Twin Falls is a 2-hour drive, Logan is nearly 2 hours, Brigham City is about 2 hours, Ogden a little farther, and Bountiful just a bit beyond that.

Anyway, it was J's first chance to participate in this activity since he turned 12. The youth must be 12 years old, and have an interview with the Bishop to be found worthy enough to receive their limited-use recommend to attend the temple. I tried to explain to him what would happen today, but he just had a hard time understanding. Combine the stress of not understanding with the anticipation of getting to go somewhere and we had a recipe of a quite stressful morning. When J gets overstimulated, he gets quite mouthy. Honestly, I would describe it as a teenager-type attitude. Only, with a normal teenager, a parent could let them know loud and clear that that kind of talk was totally unacceptable and do NOT talk to me like that any more. For the most part that will work. But not with J! I deal with this on nearly a daily basis. Sometimes it escalates to the point that he has to go to his room to calm down and improve his attitude. He is always sorry and apologetic, but does not get that when you say you're sorry, it means you won't do it again. It happens. Over and over and over again. Maybe one day we will get it.

So….we first had to go to town to gas up the van, wash it in the car wash, then go to Wal Mart to buy lunch stuff and snacks. We gassed up and I let J wash the front window. He loves washing the windows at the gas station. We pulled around to the car wash and discovered just minutes before they had closed it for cleaning. J loves going thru the car wash, so he was very disappointed we couldn't do it. We don't deal with disappointment well when our stimulation is already off the charts. Off to Wal Mart. That is a very overstimulating outing all in itself. It is hard for him to take in all the things on the shelves, and all the smells. He wanted to buy this, and that, and make sure he had enough for everyone in the car. I feel all I do is say "No, we can't get that." Or, 'Only pick one.' Having to pick one drink out of 20 can be almost too much. Needless to say, by the time we got home, we were both on edge and quite snippy. I finally threatened him with, 'You can stay home and not go at all.' (that sort of worked). He was able to have some time for down time while I got things ready to go and fixed the lunches. That helped a little, but I'm not gonna lie--I breathed quite a sigh of relief when they pulled out of the driveway. I sat down in the chair to peruse the computer for a bit and promptly fell asleep.

You would think that just a little excursion to town like we had this morning would not be a big deal. But it is. He loves going in to Wal Mart, but has to look at EVERYTHING! He has hyper senses so he can hear and smell things that we normally cannot, or do not pay attention to. Add the vision to that, and all that is on the shelves and racks is a lot for him. And it exhausts me trying to keep track of him and pay attention to what I need to get. A lot of times I try to time my trips to town to coincide when he is at therapy or out with his HI or HS worker. I know I need to take him more, but…..

They made it home about 6:30 this evening. He said he had a good time. John said he had a little trouble keeping his hands to himself in the car, with the other boys, and when he was done with his turn being baptized and confirmed, he couldn't just sit there and watch the other kids. He had to go walk around outside. He cannot sit still without having something to do with his hands. That is why, at church one will always see him with a lego toy or his paper, clip board and drawing things. He has to be doing something. John took him out and let him walk around the grounds. When everyone was all done in the temple, they loaded up the cars and headed up to Utah State University campus for some Aggie Ice Cream. It's really good stuff! The leaders treated the kids to a 2-scoop cone or cup. That was a big hit. Then home they came.

I will say--this is one of the faster nights he has fallen asleep when it was time for bed. He didn't even stir when I got up from laying by him. He didn't think he needed his oxygen tonight, so I am hoping he sleeps all night without it. We shall see how it goes. John discovered it is not an easy thing to drive a significant distance while keeping track of a car-load of kids, one of them being J. That can be quite exhausting. :)

I think it was a rather good day, all things considered. We are all learning!

Wednesday, June 10, 2015

Enjoying the Calm

The past two days have been relatively calm. I really appreciate when that happens. Both mornings had one incident in them where J got mouthy or argumentative & was disciplined for it. This morning he was actually sent to his room for some time out time. I don't send him to his room as a punishment. Rather, I let him know that is a place for him to relax and calm down. Once he is calm & realizes what he has done, he is able to rejoin the activities upstairs. If the incident was very severe, he is not allowed to come back up until I tell him he can. There have been times in the past where the calm-down time in his room was not so calm. We have a few small holes in the walls to prove it. Thankfully, that has gotten better.
Today was spent going to the dr for his weekly treatment for the warts on his fingers and foot, and to Pocatello for another appointment. His regular dr. has been treating the warts on his thumb on a monthly basis since December and they kept coming back. He finally referred us to the dermatologist (who actually lives in our ward). I think we may be starting to see some progress. These warts were on his thumb that he use to suck. I thought they were calluses, but when the first dr saw them he identified them, then explained how lucky we were that they did not transfer to J's mouth. He has had to send a child or two to Primary Children's to have the warts lazered out of their throats. That was exactly what J needed to hear to cure the thumb sucking! We do feel blessed, tho, that no warts were transferred to the mouth!
After our visit to Dr. Wray, we grabbed some lunch at Taco Bell. J's favorite is the Crunch Wrap Supreme. My favorite is Chicken Chalupa Supreme. I got two of those because I knew exactly what was coming. He wanted to taste mine. Once he did it was a hard decision of whether or not to trade half of his crunch wrap for my second chalupa. That happens a lot. He also downs his drink extra fast, then thinks he can drink mine. We are working on that. What's his is his and what's mine is mine, unless each offers some to the other.
As we ate lunch, we were rushing home to get something for someone who would be stopping over later while we were gone. I placed it by the door, ran back out to the car, and away to Pocatello we drove, for our Developmental Disabilities Services Reassessment appointment. (Say that fast several times). J went with an HS worker out in the community while I sat in the appointment going over his plan from last year and helping to make a new one for the coming year. That took just over two hours. Now that I know more of what to expect, we were able to tweak certain things so we can, hopefully, see more progress thru out the coming year. We have met some great people who come into our home and help J with various things to encourage growth and progress in his development. That meeting took up the better part of our afternoon. By the time we got home, I was beat. Thankfully, (this time) John had a dinner appointment so I got by with just fixing Macaroni & Cheese with hot dogs for supper. I try really hard not to fix boxed stuff, or prepackaged food, too often. I have found that the extra preservatives they put in the food to make the shelf life last longer, affects J in a negative way. He seems more agitated and uptight when given a lot of processed foods. I have always loved canning and preserving our food, but even more so now, and have learned to put up all sorts of new things. I have expanded my horizons greatly in that area.
Red Dye is another one that I have noticed has an adverse effect on J. Do you know how many drinks and foods have that in them? Doritos are one, and many sports drinks and soda pops. Of course, those are not very good for anyone because of the amount of sugar in them, but J still likes them for treats. It's a constant for me to stay on my toes and watch that stuff.
Wanna know what is a great sensory activity that calms my boy down A LOT? Playing in the mud. Occasionally I will posts pictures on Facebook of him playing in the mud. He has his own designated mud hole out in the garden area. That is his spot. And it is an All or Nothing kind of activity for him. I mean, in the hair, in the ears, all over the entire body kind of activity. The clean up isn't always pleasant. There are rules he must go by in order to retain this privilege. He is only allowed to play in his underwear. More than one set of clothes have been ruined. Underwear is cheaper to buy than shirts, shorts AND underwear. And when he is done he must shower off with the sprinkler before being allowed in the house to the main shower. Nearly all traces of mud must be removed, and he cannot get water or mud on me in the process. That is a challenge, because the water gets quite cold coming out of the well, so that has a tendency to overstimulate him. However, I observed last week that he was much much calmer the remainder of the week, after getting to play in the mud just twice. I think it is worth it to me. Now if we can just get him an above ground swimming pool, I think my sanity my be preserved for the summer. lol

Tuesday, June 9, 2015

As I was sitting here this morning, thinking back on yesterday, I realized it wasn't really too bad. There was only one real confrontation and that was in the late morning when I asked J to turn off the t.v. when his movie was over. He then decided to change the movie & I caught him trying to find another show on netflix to watch. Because he turned off the show he was watching, he now had to turn off the t.v. He thought he could go back to the original one instead. That is one struggle we will have this summer, I am afraid. He would have the t.v. on all day long if I would let him. But I don't like that. I don't think it is good, or healthy, and I like him to find other things to do. I have allowed a really bad habit to form that I am trying to break now.
Another issue we are trying to work thru with him is nighttime sleeping. I feel so bad for him. He falls asleep pretty fast at night but then is woken up with a headache, and lately, stomach or chest cavity pain. I have taken him into the dr. and we've even been in the ER trying to figure out what is going on. We know his oxygen sats are dropping in the night, which I mentioned in yesterday's post. When I was exchanging his oxygen tanks out at Lincare last night, I was visiting with the lady there & she suggested putting him on oxygen all night long, to see if that helps with the headaches. Technically, because of his sats dropping like they are, he really should be on oxygen all night. We tried last night, but he didn't like the mask elastic around his head so he took it off. I thought I had some nasal canula tubing, but I remember cleaning a while back and getting rid of them because when we tried them before, he hated them. Now he wants to try that instead. So back to Lincare I get to go again today to get that & try. I put the fan in his room for the first time this year because the nights are getting warmer. I think that noise is comforting to him. Once I turned that on, & got him to sleep finally, he slept all night. It is a process. We just try and try again, until we figure out what works. Even then, that may only work for a time, so we try again.
Today is a busy day. He has his HI worker (Habilitative Intervention-for Developmental Disability Services) for 2 1/2 hours, then Camp Hippo from 4-5:20, then Scouts this evening. He does like having things to do. Days that we stay home and don't go anywhere he is constantly asking to go somewhere else. I don't like being on the go so much. It is a balance.
Hopefully today will be another good day, with minimal meltdowns.

Monday, June 8, 2015

My life with Autism, FAS and FDS

I obviously am not much of a blogger. But something has been on my mind quite a bit lately, and I think someone even suggested to me, that I should keep a record about my days living with Autism, Fetal Alcohol Syndrome, and Fetal Drug Syndrome. I posted, quite some time ago, of how we got our sweet boy thru foster care. He is a joy in our lives & we love him so very much. But it is not easy. Somedays, not. at. all.
To keep this post from being way too long, I will just post about yesterday. Some days are really really good, and some days are not. Some are somewhere in between. I am still trying to decide what yesterday was.
It started out pretty good. John was gone, so J was sleeping with me. It is a comfort to him (and to me), and it is much easier. When John is gone at night there is a lot of stressing and worrying and little sleep. I like my sleep. By letting him sleep upstairs with me, we both generally get a good nights sleep and I am not running up and down stairs all night long.
So, even tho he slept well all night, he still woke up at 6 am. I convinced him to go play out in the living room quietly so I could catch a few more zzzzz's. At 7 I woke up and found him playing with his legos and watching a movie. I proceeded to get things done to get ready for church. While I showered, he found his church clothes, got dressed, and got his church bag ready. I was thinking to myself, 'what a great morning. Things are going pretty good.' I wanted to get to church a little early to make sure he was prepared to pass the sacrament. It was only his second time. With John not there to help him, I needed to talk to one of the other boys to make sure they could keep watch and help him if he needed it. We didn't make it quite as early as I had hoped, but still a couple minutes before start time. I got him settled where he needed to be and went back to sit down. Not long after he came back wanting his church bag. I told him he couldn't have it up there where he was sitting, that he would have to wait until he was done. Then I opened up the bag. Instead of the usual paper and pencils to draw with, that we have been trying to move toward, there were two hero factories, and a big bag of sunflower seeds. That's what I get for not checking the bag before we left the house. Since I wouldn't let him have the bag, he got upset and would not go sit back up with the other deacons. He was mad and was not going to do what he was suppose to. I finally just ignored him and let him think about it for a minute or two. He decided he would go back up. We made it thru the sacrament with relatively few incidents.
During Sacrament Meeting, he usually sits on the floor facing the bench, to play with his legos, or draw. Yes, I know. He is 12. He should be sitting up on the bench by now for the whole 70 minutes. But hey! We have got him sitting up during the sacrament, and especially now that he is passing, so I feel we've accomplished much. Baby steps!
About 10 minutes before closing time, he decides he is tired and tries to lay down, under the benches. 'No. You are too big for that.' (he is 5'8" tall and 190 lbs). That mildly upsets him, but we manage to get him sitting back up. (KC and Jordan had come up for the weekend, so they were sitting with us, helping me out.)
Once Sacrament Meeting was over, he knew he must go to his 'old' class. That is the Primary class he has been going to all year. Until January, he will continue to go to this class. Then he will move up to a Sunday School class. After the Primary class, instead of going into Primary for Singing and Sharing Time, he is suppose to go to Priesthood with the other Young Men. I had been asked to sub in Primary, leading the music, and John was not here to coach him to go to Deacons Quorum, so I just told him he could come into Singing Time with me. I THOUGHT he would be good. Nope! First, while they were waiting out in the hall for class change, he went into the Young Women's room, licked his hand, and rubbed it all over the light switch. One of his babysitters saw him do it and chased after him, but he got away from her. She told me what he had done. Sigh!
Next, once in the Primary room, he would keep calling out to me from the back of the room. He was bored. He wanted to play on my phone. He wanted to go out in the hall. He wanted to come sit up front by me, etc. Thankfully, I didn't have a whole lot of time for singing time, got it done, told the pianist I was leaving, and asked the Primary President to please lead the closing song for me. And we left! Still, not a really bad day, so far, but he was getting the idea that I wasn't very happy with how he was acting.
For the most part, the rest of the afternoon wasn't too bad. He played pretty good, unloaded the dishwasher for me without too much complaining, because Jordan helped him, and wasn't too sassy and rude to me when talking to me. I was still counting my blessings.
After KC and Jordan left to go back to Utah, he decided he wanted to go for a bike ride. He wanted to ride down to the subdivision and back (about 3/4's of a mile one way). I thought he would be ok so I was going to let him, but when I told him he could NOT go into the subdivision, that he had to just turn around and come back, he decided he didn't want to. (I am figuring out his motives for wanting to do things. He wanted to go find friends to play with. Nope! Not happening without permission first.) He finally talked me into going for a walk, so he could ride. I needed some motivation so off we went. I am trying to get back into running, so it was good for me to get out & go.
On the way back home, he rode ahead. He was doing good staying on his side of the road and not all over it, until a pickup came up behind him. Thankfully she was still a ways behind him when he heard her coming and darted over to the other side of the road. In his logical mind, he needed to be on the other side of the road so he wouldn't be in her way. After she passed by him, he crossed back over tho where he was suppose to be. I am so glad she wasn't closer to him. when he darted across. When I got home I had to go over 'the rules' again with him, that he stays on the side of the road. The cars will go out around him. That is a constant with him, going over the rules. The same ones, over and over and over and over again. We don't remember well.
Still thinking the day was a pretty good one.
While on the phone to my sister, he asked if he could jump on the trampoline. Of course! I knew eventually water would be involved, because he thinks that is the only way to jump on the tramp. That was ok too, but next thing I knew, he was standing at the door with soap all over him. I quickly got off the phone and started quizzing him about the soap. First, it was just on the tramp. Nope! Sorry, I'm not buying that one. Then it was just a little bit. Try again! You got that expensive bottle of body wash out of the shower didn't you? 'Yes.' And you used up the entire bottle didn't you? 'Yes.' Ugh! So much for the good day! I made him shower off with the sprinkler to get the worst of it off, then come into the shower for the rest. Yes, grass got tracked in clear thru the house, because I had just mowed the lawn the previous day. (The tub was filled with grass too).
The rest of the evening went pretty good, because he knew he had upset me & I wasn't happy. When bedtime came, I was able to get him into bed without too much incident, altho he kept stressing over when Dad was going to get home and why wouldn't he get to see him until morning. We finally got him to sleep, & I came upstairs to relax & wind down.
About an hour later I heard him cry out so I went down to see what was wrong. His head was hurting. We deal with that a lot. I thought we had them under control, but they've been starting up again. It doesn't happen until after he falls asleep. We have done a couple of all-night oximeter tests, testing his O2 stats while he is sleeping. Apparently, his sats are dropping at times, while he's asleep. I am wondering if this is causing the headaches.
Anyway, we got the oxygen started, but this one seemed to be a little worse. I don't know if that was the case, or he was just worrying about when Daddy would get home. Just when I would get him settled down, about 15 minutes later he would cry out again. Then, his 'heart started hurting'. It pains him in his chest in the vicinity of his heart. I tried everything. Oxygen, oils, Melatonin, rubbing his back, more oxygen, even taking him for a drive in the car at midnight, hoping to relax him enough that he could fall asleep. I think we managed to accomplish that goal about 1:30 this morning. I have no idea what is going on, and neither does the doctor.
So, that is just one day. Actually, not a really bad day, considering. There have been worse days. Puberty is rearing it's ugly head. He is beginning to act like a pre-teen, with the sassiness, and attitude, but with the mentality of only an 7-9 year old. Some things he is age-appropriate in, but most things, much more delayed. And did I mention the arguing? Oh, the arguing! I have already raised 4 teenagers. But you can reason with them, for the most part. This child? No. It doesn't happen! He argues with me. And argues with me! You know I just don't know anything. He does. No matter how many times I tell him to stop arguing, he will do it again. He sure is able to push buttons!
I don't write this to garner sympathy. I do it, I believe, to start keeping record of what happens daily. And, if it helps a few people understand what it is like living in our home, then maybe that accomplishes something too. I think it helps me, most of all, to put it down into words. That is my way of dealing with it I guess. I really don't mean to blab my problems to all the world. It is just me. I have to find a way to deal with the stress so I can be more of a benefit to him. His sensory level is super high. Even when I may not think I am stressed, he will sense it. So I try hard to stay as even keel as I can. I do my very best not to baby him. I am trying to teach him he has daily chores to do, to contribute to the family. I try to help him understand I am not here at his beck and call. If he wants me, he must come to where I am. We are trying to teach him good and proper manners when around others, and to be kind and respectful. But it's a process. Some days I think we are getting it, other days, not at all! It seems, lately, too, that his sensory overload button is stuck. Everything overstimulates him, and so much faster than usual! Just having his brother home, with his girlfriend, is overstimulating. Taking him to town is overstimulating. Going to church, with all the people there, in one building is overstimulating. I just keep hoping, and praying that this too will pass. That one day he will grow out of it, or learn how to control it. Just like I hope for all the other things that he may learn to control one day. It's the only way I make it thru, sometimes. Hope.
Oh yeah, one more addition to the post. I went into the use the back bathroom this morning. I don't go in there often, but just had cleaned it a couple of weeks ago. The floor didn't feel very clean. Yep! There was pee on the floor, dried, around the toilet, on the lid, on the back of the toilet, probably on the wall too. We aren't careful where we aim. But hey! At least I finally have him remembering to flush after he uses the toilet, most of the time. And he can finally wipe his own bottom after a bowel movement. That's progress. Right?